Dave's Great Adventure

Intro to My Story

2012-01-19T10:50:00.001-06:00

This is the story of my finding out I had an incurable and lethal form of leukemia. It starts in early 2002. I've been lucky, as I've lived ten years with the disease, which is longer than the average longevity for a lot of folks. I never thought I'd live this long! This story starts out with a series of messages I sent to my family regarding my illness, before I even knew what I had. Then it goes through a lot of anguished and fearful messages as I realize what I'm dealing with. You see, my dad died of the same disease after having it for five years. These short messages start in February and go up to about July 2002, when I started my first round of chemotherapy.

When I finally started my first round of chemotherapy in July 2002, I began a journal, at the suggestion of a colleague, which I sent out to concerned friends and family. I included a lot of medical information about the disease and its treatments, my fears about my future and what was going to happen to my wife when I died, plus a lot of personal information that concerns things not generally discussed in public; my depression, references to sexual dysfunctions, side effects, diet and weight problems and, uh, excretory problems (all in good humor of course, without many clinical details). I'm a physician so I'm pretty open with these things. They're what I dealt with in caring for patients for decades, after all. There are many deep, thoughtful passages about death and dying, but there are also a lot of very humorous references about my treatments and my many misadventures (such as the time I accidentally pulled a central line out of my chest while in the shower--"Dumb ass!" I called myself) that I experienced during my therapy. There's rare bawdy humor, too, but I tried to restrain myself, not being sure exactly who was reading my stuff. You may find some of these things interesting, funny, sad, boring, too clinical, or whatever. It kinda reads like a book, and each "verse" (as I for some reason listed each passage) tends to build on the previous ones. Our daughter convinced me that e-mails were "so last-century" and she encouraged me to start this blog. So here ya go!

It presently consists roughly of five sections starting with the compiled messages to my family from early 2002. The divisions between are roughly as follows:
Prologue-- early 2002 up to about July 2002.
Book One-- The First Chemotherapy Experience, July 22, 2002 until October 2003
Book Two-- Relapse, and The Second Chemotherapy Experience, With Stem Cell Collection, October 2003 to about October 2004 with a few updates thereafter
Book Three-- Starting in February 2008, More Chemotherapy and Some Experimental Stuff, with introductory information in the letters leading up "Book Three."
Book Four--It's Baaack! Starting March 2010.
Book Five--(Coming Soon!)

I welcome e-mail questions and frequently have addressed them openly in my letters which have been sent out across the US, Germany and Scotland to many concerned friends and family. I can be reached at dreck@prodigy.net

I hope to use this blog to keep all you folks who are reading this updated from time to time as I progress into my adventure and experience more and different treatments.

Arzerra and Beyond...But To Where?

2012-01-18T10:23:00.003-06:00

Dave’s Great Adventure
Book 4, Chapter 1, Verse 6
January 13, 2012

[[[ “If you want to make God laugh, tell Him your plans.” --Anonymous
I’ve used this quote a couple of times over the years but it’s again appropriate. We only “think” we have our lives planned out. The following message was started in mid-November, but then I didn’t get back to it for quite a while. Meanwhile, things have changed again. Read on. ]]]

---November 14, 2011---
I think there are real signs of hope with this new stuff. I believe it’s working better than I thought it might.

When I last wrote about what was going on I had just finished Phase One of my Arzerra (ofatumumab) treatments. The treatments had begun rather abruptly in August. In mid-August, after waiting five weeks to hear the results of the cytogenetic tests which I described in excruciating detail in my last letter, my local doc got the details about the development of my worrisome p53 mutation and the plan for treatment, from my doc in Houston. With that information, we began the Arzerra almost immediately, within a week. In fact, we started the first dose of the Arzerra on August 23rd, our 42nd wedding anniversary. I try to make our anniversaries memorable for Kathy.

The Arzerra infusions have gone very well. The first phase of the treatment was eight weekly infusions. The side effects have been relatively minimal, all things considered, and that’s because I haven’t been getting any poisons this time. With all my previous treatments I had combinations of drugs which included poisons, as most chemotherapy targets fast growing cells, like cancer cells. The problem is, of course, that all fast-growing cells in one’s body are not cancer cells, so normal cells get affected as well. And that leads to side effects; the nausea, hair loss, mouth sores, etc. One of the drugs which I had in all three previous chemotherapy regimens is some stuff called cyclophosphamide, which advertises its role in chemotherapy by its trade name, Cytoxan. That’s a play on its activity within the body. “Cyto-” means cell; “toxin” means poison. Therefore, its trade name, Cytoxan, or “cyto-toxin” literally means “cell poison.”

But the Arzerra I’m now getting is not a poison, per se. It is pure antibody, an antibody directed against white blood cells with a protein called CD20, which is on the cell membrane of all CLL cells (CLL cells are actually abnormal B-lymphocytes, which are the kind that make your antibodies). It attaches to the CD20 protein and allows the body’s immune system to bore a hole in the leukemia cell’s membrane, popping it rather like a microscopic balloon. That’s the good or even great part about the antibody treatments. They target only a specific population of cells, ignoring the rest. But when they simultaneously pop billions of leukemia cells, all those dying cells spill their cell contents into your blood stream, and all those proteins, histamines, DNA and such, can clog your kidneys, cause severe allergic reactions, breathing problems, low blood pressure, and the like. Because of this possibility, before each treatment we are given antihistamines and steroids, to suppress the allergy-like reactions, and we are given the drug very, very slowly. The first treatment I got took us from 8:30 in the morning until 6:30 in the evening to complete. As I got used to the drug and as my white blood cell counts dropped (giving the Arzerra ever fewer “targets” to seek out), we were able to start giving the drug faster and faster and by the end of my eight consecutive weeks of treatments, we were able to complete the infusions by 3:00PM.

By the way, my clinic billed about $25,000 for each weekly treatment. These newer chemotherapy drugs are wonderful but they are also fantastically expensive.

But the Arzerra has worked extremely well, dropping my white blood cell counts from a pre-treatment level of just under 80,000 (normal is about 3,000 to about 9,000) to about 4,000 after the eight weeks of treatment. Now, that count is in the normal range, but the count still is not “normal,” as another test that looks for abnormal white cells in my blood, determined that 35% of my remaining white blood cells were still leukemia cells. But that’s not really a surprise. The Arzerra really wasn’t expected to put me into a complete remission anyway.

Despite that minor point, things are going very well, better than I’d hoped. When I started the Arzerra I was told that there was only about a 50% chance I would have a response to the drug because I now have the more aggressive leukemia mutation. Well, I’m obviously in the 50% of the population on whom the new drug works. Then, after we finished the eight consecutive weeks of infusions, and waited a full four weeks for the start of my monthly treatments, my white counts continued to drift down. In other words, despite stopping the drug for a month, my disease didn’t come charging back. I hope this trend continues. So far it has. I’ve had one of the monthly infusions and my white counts have remained around 3,000 or so. My next treatment will be in early December and will continue monthly through next February.

But just about any treatment will have side effects, and the major side effect that one gets with the Arzerra stems from its ability to seek out and kill only white blood cells with the CD20 marker on its cell wall. Unfortunately, all NORMAL B-lymphocytes (the ones we depend on to make our antibodies) ALSO have the CD20 antigen. So, that means that while the Arzerra is wiping out billions of leukemia cells, it’s also taking out a large number of my normal lymphocytes, too. That puts me at risk for infections as well as other tumors and so forth. But, that’s the chance I have to take to be able to hold my disease at bay long enough to try to find another, better, long term treatment and possibly a cure. In any case, the plan all along with the Arzerra has been to give me this drug over about six months, then wait perhaps six more months until it stopped working and then do…something. What, exactly, has been unclear.

I’ve been trying to re-evaluate my expected longevity based on the results of the Arzerra so far. When I first found out I had the p53 mutation, which I already knew was bad, I went back to my sources, one of which is an excellent CLL web based resource called “CLL Topics,” a well researched, critical review of all things related to CLL and its treatment. Here I found the article which noted that average longevity was just 13 to 15 months! Just over a year. But, it’s now been six months since I started the Arzerra and things seem to be going well. Since the CLL hasn’t stormed back between my monthly infusions so far, I’m guessing I may have more than a year left after all. Other sources I’ve checked suggest average longevity is perhaps 1 to 2 years and another source says 2 to 3 years. In any case, if these are accurate, those are AVERAGE numbers meaning half the patients will live longer, the other half less than that. And all of us cancer patients just KNOW we’re going to be in the longer-lived half. It’s unclear also, if these numbers are for treated or untreated patients, and if treated, what the treatment was. We shall see. In any case, I’m feeling much too normal to think that I’ll be dead within the year.

---January 11, 2012---
Things have changed. I wrote all the above about eight weeks ago but then couldn’t get back to it to finish the report. I had been very encouraged by the results of the Arzerra treatments since they seemed to be holding off the advancement of the disease. But, in the last several weeks, though my lab tests still show improvement, my lymph nodes are again enlarging in my armpits and some are now growing in my neck as well. Not good. My local oncologist here in Denton recently reported this to Dr. Keating, my doc in Houston at M. D. Anderson, and we got an unexpected phone call a few days ago.

Dr. Keating called back with some surprising and potentially very exciting news. He has cancelled the last of my four monthly infusions of Arzerra, since it hasn’t worked all that well in the last couple of months anyway and, after I’ve been off the drug for a month, which will be at the end of January, I am to get in contact with him again to talk about enrolling in a clinical study of some kind. What kind of clinical trial? I don’t yet know. When will it start? I don’t know. How long will it be? I don’t know. What are the risks involved? I don’t know.

He had been talking about possibly going to a stem cell transplant in the very near future. In fact, I have several appointments set up in late February to speak to the transplant team in Houston. That seems to be the new approach to treating folks with the p53 mutation. Rather than try multiple treatments of chemotherapy which will likely not work, they’re going to transplantion sooner in the course of treatment, as the transplant works better when done in patients who are not critically ill. Of course, with a 15 to 25% mortality rate associated with transplant, it’s a hard sell to folks who don’t feel or look critically ill, but that’s the current trend and I have been rather expecting to be going that direction in the near future.

But, now Dr. Keating is talking about enrolling me in a clinical trial which is just now opening. Unfortunately for me, the message I received did not mention what the trial would be, so I’m a bit in the dark. We have talked about the new, rather unfortunately named “btk inhibitors” like CAL 101 and PCI 32765 (this would be a good time to use Google!) which is what I am hoping he’s going to get me into. These seem to have great promise in destroying the disease and seem to have minimal side effects. The treatment consists of simply taking a pill daily, with most patients having minimal side effects. That sounds too good to be true. I mentioned the unfortunate naming…. The drugs are called “Bruton’s tyrosine kinase inhibitors,” hence the “btk” designation. But not too many years ago there was a serial killer in Wichita, Kansas who went by the name of the “BTK killer,” for “Bind, Torture, Kill.” Well, this stuff kills CLL cells, I suppose. Maybe it tortures them too!

Other possibilities for the clinical trial include a combination of drugs using lenolidamide, a derivative of the notorious birth defect causing drug Thalidomide. It is also a pill form of anti-CLL drug, but is frequently used in combination with other drugs such as Arzerra. And then there are the new CARs treatments. This stands for “Chimeric Antigen Receptors” and is the basis for the treatment that made a big splash in the press last summer, as having cured a few patients. It involves treating one’s own T-lymphocytes and training them to attack the leukemia cells. This has worked well in a very few patients, but thus far there is no long term follow-up, just a year or so. It may take the place of stem cell transplants some day, but is extremely labor intensive and expensive, since it involves taking a patient’s T-lymphocytes out, treating then, and reinjecting them into the same patient. Every patient will have to have a personalized treatment with his/her own T-lymphocytes. My cells wouldn’t work for someone else, and vice versa. More about T-lymphocytes later, if I end up in that kind of program.

Or, the clinical trial could be something else entirely. The message I got was third hand, having gone from Dr. Keating to my local doc’s message machine and then passed to my doc’s nurse, who called me. If there were more details in the message, I didn’t get them. I’ve sent a message to my team in Houston asking for more information but have yet to hear back from them. Wish me luck.

And so, that’s the latest. My disease is getting aggressive again, the Arzerra isn’t working as well, and now I’m off it entirely. And, some experimental medicine looms in my future, probably within a month or so.

But despite all this, I’m still doing pretty well. I don’t feel ill, I get to do most of the things I want to do if I don’t do too much of it and, really, the only consequence of my disease that I can discern is that I feel more tired than I‘d like and my muscles ache some. But hey, I’m 65 years old now. Maybe I should feel more tired that I used to.

And that’s all for now. I’ll be back when I learn more about what’s coming my way in the next few months or so.

Dave

***As I start yet another chapter in my battle against leukemia, I am reminded of this quote:
--“It is never too late to start. It is always too soon to quit.”—Norma R. Lineberger--
Norma worked for the Legal Defense and Education Foundation, and died of leukemia in September 2009.

www.adventureswithleukemia.blogspot.com

...but the news was just horrible.

2011-11-02T10:36:00.000-05:00

Dave’s Great Adventure
Book 4, Chapter 1, Verse 5
November 2, 2011

I didn’t expect this. I was doing so well. I felt good and was getting along just fine. I mean, I had done all those half-marathons, right? How could I be this sick?

We had a busy spring and early summer. My disease, which had relapsed the previous year, had been advancing faster with my white counts doubling every couple of months or so. I was expecting to have to do more chemotherapy by about mid-summer, so we packed our travel plans into the early part of the summer. We went to Oklahoma City for a marathon (in the rain and cold) in May, went to San Diego for one there in June. We went to a reunion of my Vietnam vet buddies in Tampa in late June, to a family reunion in North Carolina in July, and more. In the midst of all these trips we went to Houston in early July to see my doc there, who is one of the world’s foremost gurus in the management of chronic lymphocytic leukemia.

I was still feeling well; maybe a little more tired than I’d care to admit, but over all, I was doing okay except that my lab tests told another story. My disease was advancing rapidly. I talked things over with my doc, Dr. Michael Keating, and we went over some possible treatments. I say “possible,” because after you’ve been treated for this disease once or twice, there are no standard “best” treatments anymore, just lots of possibilities.

But he wanted to do a few more cytogenetic (chromosome) tests before we started anything, to help guide us to, hopefully, the best of our options. He said I’d hear something about the test results “in a couple of weeks.”

Now, to me, “a couple of weeks” mean exactly fourteen days. When I didn’t hear anything in those fourteen days, I made a series of calls to M. D. Anderson and played phone-tag for a few weeks, never getting any information about my lab tests. I was getting worried.

Meanwhile, a long-scheduled appointment with my local oncologist came up so I saw him and explained how things were going. We also talked over some possible options for treating my disease and then he said he’d call Houston and get the information for me. I was grateful, as I really wanted to hear the results of the cytogenetics.

Later that day I got a call from my local doc. He had heard from Houston. He had news, but the news was just horrible. He talked for a while but all I remember was something like “…blah, blah, blah…p53 mutation…blah, blah…Arzerra…blah, blah…50% chance of it working.”

What this means
When I got sick with this disease, chronic lymphocytic leukemia, almost ten years ago, it was only “one” disease. The doctors and researchers working with it knew that some folks with this disease died in two or three years while some folks lived, without needing treatment, for maybe twenty years or more. They knew that some patients responded well to treatments while others didn’t. They just didn’t know why. But about eight years ago they found that CLL is actually a group of diseases, differentiated by the chromosomes in the leukemia cells and several other protein “markers” exhibited by the disease. There are at least seven or eight major sub-groups of CLL and perhaps more, and survival and resistance to treatment varies greatly among the groups. By looking at the mutations of the chromosomes in your cells physicians can tell how long you’ll likely survive and what treatments might work best for you, and also how aggressive they should be with trying to treat your disease.

A couple of years after I got sick, they tested my chromosomes. They were 46XY, normal male chromosomes, as you’ll no doubt remember from your high school biology course. That was very good, as normal chromosomes were a marker of easier to treat disease and generally longer survival. Curiously, however, there is one mutation called 13q- (13q deletion) which is even better than normal chromosomes in terms of survival. But there are also several possible mutations of the disease that indicate a more aggressive and harder to treat disease. These can be ranked in order of increasing resistance to treatment and subsequently, shorter survival. And since patients with CLL tend to mutate to harder to treat forms of the disease over time, my doc in Houston was retesting my disease to see if I had mutated. And the tests in July at M. D. Anderson now showed that I had the p53 mutation, also called the 17p deletion (17p-), one of the very worst of the several variations.

Details
I’ll include a short description of what this genetic shorthand means for my friend Steve who lives in either Englewood, Colorado, or Centennial, Colorado, or maybe unincorporated Arapahoe County (I don’t remember which for sure), in the Denver suburbs. He likes details. Anyway, normally we all have 46 chromosomes per cell, 22 pairs of “somatic” chromosomes plus our sex chromosomes, the XX for females and XY for the guys. The other 22 pairs are numbered 1 though 22. Also, if you remember looking at pictures of chromosomes in textbooks, they look rather like stretched out X shaped figures, usually arranged with shorter arms at the top and longer arms at the bottom.

(By the way, our chromosomes don’t just stretch out and pose for the pictures that we see in books and magazines; they have to be manipulated with various chemicals to make them look this way. Normally they’re all balled up in a tangled mass in our cells’ nuclei.)

The short arms at the top of the chromosomes are called the “p” arms; the longer ones at the bottom are the “q” arms. If you took a part of the “q” arm off a 21 chromosome, it would be called a deletion and written as 21q-. Sometimes extraneous genetic material gets added onto chromosomes. These are additions, written as 21p+, for example.

The p53 mutation
So, now I have the dreaded p53 mutation, also called the 17p- mutation, the 17p deletion. Over the last few years my disease had changed, which is what it typically does for most patients with CLL. p53 is a gene, the “tumor suppressor gene,” which normally resides on the short, “p” arm of the 17 chromosome. Now it’s not there; in my case; it’s been “deleted” somehow. This is a very important gene which, as its name suggests, suppresses tumor growth and malignancy formation. Now I don’t have it anymore. When you read about the p53 mutation in CLL you see things like, “much more difficult to treat,” and “more aggressive disease” and “average survival of about 13-15 months.” Our friend Larry Love recently died here in Denton. Larry had an extremely rare case of metastatic basal cell skin cancer. Basal cell cancers are generally among most easily treated of all skin cancers yet in Larry’s case, this usually innocuous skin cancer spread throughout his body and despite three years of treatments, he died because the disease could not be controlled. Larry’s skin cancer had the p53 mutation. The p53 mutation is not good news.

Arzerra
This is the drug my doc picked to treat my disease this time around. Now, if you’ve been reading my stuff for any length of time at all, you’ve read about Rituxan, which has been a part of my three different previous chemotherapy regimens. Rituxan (rituximab) is a mouse-based antibody against leukemia cells. It targets a specific protein (called the CD20 receptor) that all CLL cells have. It works extremely well at doing this. The only problem is that being mouse-based (or “murine”), it itself is a foreign protein and humans can form antibodies against these murine antibodies, inactivating them.

Arzerra (ofatumumab) is similar to Rituxan in that it is also an antibody which attacks the CD20 protein receptor. It has been around in Europe for a few years but has only been approved for use in the US for about 18 months. In Europe it is called HuMax, which reflects the interesting fact that it is a humanized antibody against the CD20 site. In theory at least, it should be better for attacking the leukemia cells since humans shouldn’t create antibodies against it. In addition, it binds more tightly and for a longer time to the leukemic cells than does Rituxan, if you believe the manufacturer.

Interestingly, when reading the prescribing information that comes with this drug, the manufacturer states that it will not cure, put into remission or reduce the symptoms of any patient with CLL. This is an amazing thing to put in writing. It must either be something required by the FDA or perhaps it’s just their lawyers lowering expectations. Otherwise, it would be no more than a placebo drug!

I was very disappointed, at first, to be prescribed single-agent therapy with the Arzerra. My disease is now much more aggressive, yet I was being given a drug that would be very unlikely to put me back into remission. Studies of the drug in patients with my mutation showed only about a 50% rate of successful treatment. From the very beginning of my adventure I have wanted to be as aggressive as possible in treating the disease. Here it looked to me as if we weren’t doing as much as we could. I had found, on-line, several studies of Arzerra being used in combination with other drugs with apparent good success in short term studies. I wanted to use lots of drugs. I wanted to kill the leukemia. I want to rid my body of it. That’s always been my goal.

But in the larger picture, moderation may be better in treating my disease. Yes, it’s much more aggressive now. Yes, my survival seems to have been shortened by the mutation. Yes, it’s harder to treat. But, there are several, and I mean several as in four to six or so new therapies which are just over the horizon and at least some of these depend on a patient’s functioning immune system to be effective. In the past my chemotherapy regimens have included the use of several toxic medications which have vigorously attacked my disease with a “chemical machete,” clear-cutting my marrow, taking away good cells as well as bad, severely damaging my immunity. The use of these drugs now could jeopardize my ability to use some of the newer therapies which are still in the study phase and just on the verge of being more widely available. Three of these are in pill form and are taken daily, at home, much like the vaunted drug Gleevac, which has shown such remarkable success in treating (but not curing) another form of leukemia known as chronic myelogenous leukemia (CML). And there are studies using gene therapy to train one’s own T-lymphocytes (a topic for another day) to attack and kill the leukemia cells. This therapy has reportedly “cured” two people in a study recently released by the Abramson Cancer Center in Philadelphia, though the follow-up was a short ten months. And if nothing else works, there is a stem cell transplant, which is the ultimate treatment for my form of CLL with the p53 mutation. With the p53 mutation, some docs reportedly give you one course of chemotherapy and if you fail go directly to transplant. The problem is that there is somewhere between a 10% and 25% mortality (death) rate with stem cell transplants. You don’t go into them lightly. But, they are said to give “durable remissions” in patients with the p53 mutation. Notice that the word “cure” wasn’t used. It rarely is.

Anyway, I’ve been through “Phase One” of the Arzerra treatments and the short story is that it has worked well, dropping my white count from 80,000 to about 4,000 (normal) in just eight weekly treatments, with minimal side effects. “Phase Two” starts later this month. I’ll leave the details of all this for the next update, since this has gotten long enough. And I hope to have it to you before another six months goes by.

Dave

I read these words in a USA Today recently, while sitting in a chair in the waiting room of the Leukemia Clinic at M. D. Anderson.

“Have you come to the Red Sea place in life,
Where, in spite of all you can do,
There is no way out, there is no way back,
There is no other way but through?”
---Annie Johnson Flint

www.adventureswithleukemia.blogspot.com

It's Back!

2011-05-29T11:22:00.003-05:00

Dave’s Great Adventure
Book 4, Chapter 1, Verse 4
May 29, 2011

“It’s back.”

When you have a malignancy of any kind, breast, colon, prostate, or whatever, and you’ve gone through a bunch of treatments with chemotherapy and surgery or radiation and all the other things that go along with these kinds of treatments, it’s a wonderful thing to be told you’re in remission. It makes all the torture and misery of the treatments worthwhile. You start to feel like things are back to normal, that you don’t need to worry about dying too soon or having to go through more treatments. But then, at some point, perhaps quite unexpectedly, you’re told, “It’s back.”

That’s probably one of the most economical ways to give really bad news. A couple of words, eight letters, that tell you the thing you’ve been fearing, that unseen disease in your body, wants to take over again. And wants to take you from everything and everyone you know.

I’ve known from the very beginning, from when I was first diagnosed with leukemia, that it was, and is, incurable. Yet, like every other person with any kind of cancer, I want to believe that I’m going to be the exception to that “incurable” rule and that I’m going to survive, I’m going to outlive this disease. After each of my courses of chemotherapy I’ve been told that I was in complete remission. I focus on the word “complete” and try to translate that into “cured.” I know, intellectually, that I’m not cured, but I want to believe that I am.

After each round of chemotherapy, after I get over the side effects and regain my strength, I start living a fairly normal life. It’s easy to forget that I have an incurable disease lurking in my body. I actually sort of forget about it, or think that it’s just been a bad dream, and that it’s not real. But at some point I get the news…

“It’s back.”

…and Kathy and I look at each other and are fairly roughly thrust back into the reality that I have an incurable, lethal disease. And we know that my future holds more treatments and that with each treatment I undergo, I have fewer and fewer options left for the “next time.”

I’ve had three different courses of chemotherapy in the last nine years. I’m very lucky, actually, that there have been these options for me as this wasn’t the case in the past. And with each course of chemotherapy, each of which was experimental, I’ve been put into a complete remission. And each time I’ve been thrilled with the news. But each time I’ve eventually heard the words, “It’s back.” It took a year the first time, eighteen months the second time.

My third course of chemotherapy was my longest and most intense, at six months long and including four different drugs. A year out from the completion of my chemotherapy I still was in complete remission. I had a bone marrow biopsy done about that time and they couldn’t any trace of the disease even with a “molecular probe.” Now, that was particularly good news as I’ve heard of folks like me who have gone through similar courses of chemotherapy and then been found to have a negative molecular probe, and some of them have been alive and free of disease many years, even a decade later. I thought that would be me, too. Later, my doc even told me that with this finding there were three chances out of four that I’d be in remission for up to ten years!

“It’s back.”

I heard those words again just days after I had been told I might be in remission for up to ten years, in a particularly cruel sequence of events. I suppose I was just that one person in four to whom the statistics were unkind. It has to happen to somebody or there wouldn’t be any odds to try to beat.

My disease actually reappeared over a year ago but I’ve felt so relatively normal during that time that I’ve continued to train with the wonderful folks from The Leukemia and Lymphoma Society’s Team In Training and, since I recovered from my last course of chemotherapy, I’ve completed eight half marathons, even as my disease slowly grew within my body. And soon, within a week, I’ll do my ninth. And then I’ll leave my training schedule behind and start another task and schedule, the schedule that our lives revolve around when I’m undergoing chemotherapy. And that schedule does, in fact, rule our lives.

I don’t know yet what that schedule will be. I have some appointments coming up in June to see my local oncologist and to get some more blood tests, but I won’t know with any certainty what the future holds until we see my doc at M. D. Anderson in Houston. I’ve gotten my appointment with him moved up to early July and that’s when we’ll hear what he thinks we should do. As one of the nation’s preeminent specialists, specifically in my form of leukemia, I have great respect for his opinions.

In the last year or so he has dropped hints about what we might consider doing if/when I relapsed. I believe he’s going to want to treat me with a combination of two new drugs, Revlimid and Hu-Max. (I won’t go into too much detail about these drugs until I know for sure that we’ll actually be using them, even though our friend Steve out in Englewood, Colorado loves technical details) but I will mention that if we use this particular combination, I’ll be taking a pill form of chemotherapy 21 days a month (the Revlimid) in combination with intermittent IV infusions of the Hu-Max, which is an artificial antibody against the leukemia cells. The course of therapy lasts up to forty weeks. Using a pill form of a drug will certainly be convenient, if we end up doing this particular protocol.

But I have to tell you, I’m as worried about the course of my disease and the side effects of the drugs as I have been in a long time. These drugs, and particularly the Revlimid, can induce some particularly nasty side effects. And the incidence of inducing complete remission really isn’t all that high. I’ve seen 9% reported in some early studies after forty weeks of treatment. And the logical question that comes to my mind is, “Well, if I’m not in complete remission after those forty weeks…well…, then what?”

But I’m getting way ahead of this. I tend to be a planner and a worrier and should learn to wait and see what actually happens, but that’s hard for me.

Since I don’t have any more details to pass on at this time I want to begin closing by thanking all of you for being so generous in helping me with my San Diego fund raising drive. I’m not looking for donations any more, as I’m well over my goal, but please take a moment to look again at my fund drive page and see what you guys did. You are all awesome. Thanks so much.
http://pages.teamintraining.org/ntxok/rnr11/deckberg
I have failed to thank each of you individually so far, but each of you WILL hear from me.

I’ll close by passing on a bit of good news. About a year and a half ago, or so, I had an echocardiogram which seemed to show that my heart was failing and that I would soon need open heart surgery to repair my mitral valve. I wondered how that could be, as I was feeling well and, in fact, had recently completed a couple of half marathons. Well, after having follow-up echocardiograms in three months, six months and then again in another six months, well…, everything is described as “stable” and there is no longer any talk of needing surgery any time soon. At least that part is doing well.

I’ll be back if there are any significant changes or after I go to Houston and find that we have a plan. Until then, thank you again for all your help with my fund drive and thanks for helping the researchers who are looking for better treatments for me and so very many people like me. As I’ve told many folks at many different meetings, my only hope of outliving this disease is for some researcher, somewhere, to find a cure in my lifetime.

Bye now,

Dave

www.adventureswithleukemia.blogspot.com

PS: After our armed forces recently “removed” the person responsible for the mass murder of 3,000 of our fellow citizens, I am reminded of the quote, usually attributed to George Orwell, which goes:

“We sleep soundly in our beds because rough men stand ready in the night to visit violence on those who would do us harm."
Please take a moment this Memorial Day to remember our fellow countrymen, these “rough men” (and women, too), the many, many thousands of them, who have died in the service of our country.

Dave's Great Adventure Returns

2011-05-19T10:53:00.000-05:00

Dave's Great Adventure
Book 4, Chapter 1, Verse 3

I know it's been a long time since I've sent out an update to Dave's Great Adventure, to the great relief of many of you, I'm sure. But unfortunately I'm going to have to resurrect this long-running drama in the very near future as things are starting to change more rapidly than I'd hoped. More of "Book Four" looms in front of me.

Now, I have tried to get some updates out in the past 18 months or so, and have actually started composing a few but I just couldn't finish them. It wasn't that there was nothing to report, as many things of some import have happened, but the basis of the DGA series, my leukemia, though relapsing, was doing so very slowly and undramatically...until this week. So I'll have to get things going again, in many ways.

What has happened is that my white blood cell counts have more than doubled over the last three months. Typically, if a leukemia patient's white blood cell counts double in six months to a year, that's considered worrisome. My counts did so in a far shorter time. That may indicate a return of a more aggressive disease. We shall see. I am awaiting some calls from my doctors as to what we're going to be doing and when we might do it. I presume Kathy and I will be traveling back to Houston, to the M. D. Anderson Cancer Center and I suspect that more chemotherapy of some type will happen much sooner than later.

But that's not the immediate reason I've gotten in contact with you again. I don't have enough details on what's going to happen to really fill you in. What I really need from you right now is your assistance, if you can me reach a goal I need to reach very soon.

During my current remission I have been fortunate to be able to participate in the Leukemia and Lymphoma Society's Team In Training. Most of you know that I have gotten involved in several endurance events, which I'm very pleased to say I have been able to complete. In the last two years since I completed my most recent chemotherapy treatments, I have finished eight half marathon events. I find that quite amazing, as before I had chemotherapy, I had never done even one, and never thought I'd ever do even one. Many of you have helped me out with some fundraising which I've done in connection with a few of these events, as well.

I am going to try to complete ONE MORE half marathon before I start any therapy and am scheduled to participate in the Rock and Roll Marathon event in San Diego in just over three weeks. I have pledged to raise some more funds for the LLS and have just until May 24th to do so. I haven't been very aggressive in my fund raising this time as I have asked some of you for your help several times over the last few years, so I'm a bit late in getting this going (though I have reached out to some of you, and many of you have already helped out; thanks for your help!).

But, if you're able to do so, I would greatly appreciate your taking the time to read my story at the link below:

http://pages.teamintraining.org/ntxok/rnr11/deckberg

If you're able to make a donation to my fund drive, I'd be very grateful as well. This will be MY LAST fund raising event for quite some time, as I fully expect to be under treatment again before the end of the summer. That's going to put a stop to my distance event training.

As I find out what's awaiting me on the treatment front, I'll be back in touch with an update that doesn't include a request for a donation. I should know something fairly soon.

Thanks for any help you're able to provide. Any funds I collect on behalf of the Leukemia and Lymphoma Society will go to help patients with these diseases and to further research in to finding cure. I personally appreciate what you have done for me and so many folks like me in the past.

I'll be back soon with an update as to what sort of experimental chemotherapy I'll be doing this time. I know it'll have to be something experimental, as there is no standard therapy for someone like me who has now relapsed three times after being treated for chronic lymphocytic leukemia. Wish me luck! Prayers are appreciated as well.

Bye for now. I'll be back again soon.

Dave

What's Next? And Parking Issues Too!

2010-07-21T22:07:00.001-05:00

Dave’s Great Adventure
Book Four, Chapter 1, Verse 2

I have often been asked in the last few months, “What are you doing now that your leukemia has relapsed?” Folks wonder if I’m on chemotherapy again, or taking some kind of pills to hold the disease off, or what. These are fair questions, as it would seem logical that now that my disease has come back yet again, we should be doing something.

In fact, we are doing nothing. At least, next to nothing. We are just doing blood tests periodically, about every two months, to see how fast my disease is coming back. This is called the “Watch and Wait” method and it’s used a lot in the management of chronic lymphocytic leukemia (CLL).

Now, if I had breast cancer or prostate cancer or some other solid tumor kind of cancer, the reappearance of the disease would spark an immediate plan to once again attack the disease with chemotherapy or radiation or something, in an attempt to destroy as much of the disease as possible before it had a chance to grow any more than it had already. With most solid tumors, the bigger the tumor, the harder it is to treat.

But my cancer is not a solid tumor, it’s a blood cancer. And the leukemia cells flowing in my bloodstream aren’t actually hurting me at all. That doesn’t sound possible, but it’s true. They are just abnormal white cells, lymphocytes, and all they’re doing is flowing around in my blood, not dying on time like they’re supposed to, and slowly increasing in numbers. But they aren’t really hurting anything. What will kill me is when enough of them accumulate in my bone marrow to prevent the formation of normal red and white blood cells and platelets.

So why don’t we treat my disease now, while there isn’t much of it around? That, too, is a great question. We could do that, but the treatments have their own risks, like damaging my immune system, causing lowered numbers of platelets in my blood, and in general, causing damage around the body. And since we can’t, apparently, cure the disease with the therapies we have been using, but can only knock the disease back a bit, it makes sense not to expose me to any more chemotherapy than I need to be exposed to. So, we wait until my leukemia again gets “bad” enough to need treatment.

And when is that? Another great question. It’s not completely arbitrary, but could be thought to be so. Basically, we will probably start treatments again when my white blood cell counts get to about 100,000, like they were in late 2007. Or if my platelet counts get too low, or if I start having lots of symptoms, large lymph nodes, night sweats or a host of other things. After my second round of chemotherapy I relapsed in about 18 months but didn’t need to be treated for two more years after the onset of the relapse. Five months have now elapsed since I found out I was relapsing yet again.

Let me digress just a bit and talk about my disease, chronic lymphocytic leukemia. Some folks used to call this disease the “good” leukemia, because it didn’t kill you as fast as many other leukemias out there, some of which can result in death in six months or so. In contrast, some folks with CLL live relatively normal lives for decades, never needing treatments, having what is called the “smoldering” CLL. But then there were the folks with CLL who died in a few years. Why should some folks die in a few years, like my dad who died in about five years, yet other folks live with their disease twenty years or more?

Well, when I got sick back in 2002, they didn’t know that CLL is actually a family of diseases, with at least seven or eight sub-types, and your survival depends in large part on which sub-group you belong to. The sub-types, which were discovered in about 2003, depend mostly on your blood’s chromosome types, as there are several common mutations found in patients with CLL. Some mutations are “good,” in terms of your survival, as you won’t die as quickly as some others. Some are very bad, and the disease in these circumstances progresses rapidly and is more resistant to treatments.

My chromosomes are normal, the usual 46XY that all normal males have. You’d think that normal chromosomes would be the “best” to have when you have a disease, but curiously, though normal chromosomes are one of the better types to have, they aren’t the best to have. There is a certain mutation of the chromosomes that is actually better in terms of longevity than normal chromosomes.

And there’s more. Long time readers of this never-ending story may remember that I’ve mentioned several “disease markers” that have been discovered in the years since I got sick. These markers also help predict how bad your disease will be. Some are good to have; some are bad. There’s the zeta associated protein, or ZAP-70 test. Having it is bad; my test is negative for ZAP-70, which is good. Then there’s the CD-38 antigen test, the higher the level the worse the disease tends to be. My levels are a bit high, not good. And there’s the beta-microglobulin test. Low levels are good; mine are slightly elevated. And there’s the antibody mutation; the IgVh test, which is, curiously, good when it’s mutated and bad when it’s not. Mine is mutated, which is good. So overall my disease markers are mixed.

The researchers have found that by measuring all your “markers” they can predict how aggressive your disease will be. The worse the markers are, the more aggressive your doctors will tend to be, both in terms of earlier treatments and strength of chemotherapy, since they know the disease will advance more rapidly.

So the reason for this lengthy explanation of disease markers and such is to help explain why I’m not being treated right now. My markers are not all bad. Indeed some, like the IgVh mutation, are considered very good. So even though my disease has relapsed and is slowly getting worse, my docs are fairly confident that we can safely wait at least a few more months before we begin treatments again as long as my white blood cell counts don’t go up too fast. But before all these markers were discovered, all they had to go by was a patient’s white blood cell count, lymph node sizes and symptoms.

In the meantime I have continued to work with the Leukemia and Lymphoma Society, hanging around with members of their Team In Training. I have been one of their Honored Heroes (as they call members who have or who have had leukemia or lymphoma) for a few years now, but after I recovered from my last chemotherapy I got more active in their programs. I started walking farther and farther with them, finally working up to doing a half marathon in May of last year. And since that time, I have finished five half marathons, all within the last fourteen months! Many of you have helped me do some fundraising for several of these events. I just completed my last half marathon in early June when I went to San Diego for a fantastic event with an incredible 30,000 runners doing either the half or full marathons. (The crowd was so large that, though the starting gun went off at 6:15 AM, I didn’t cross the START line until 7:05. I was toward the back of the crowd as it slowly shuffled toward the start.).

Anyway, all that talk about doing multiple half marathons makes my next bit of news hard to believe. I had just finished my fourth half marathon in May and was preparing for another in San Diego in early June when I had a follow up appointment with my cardiologist. I’ve been seeing a cardiologist regularly since I had an echo cardiogram done back in 2004, at which time they found my mitral heart valve was apparently deteriorating (see October 7, 2004 of my Adventures With Leukemia blog, link below, for the details). It was initially thought to be bad enough that I might need surgery soon. But subsequent testing showed it wasn’t quite so bad. Moderately bad, perhaps, but not seriously bad.

So I get my heart checked every six to twelve months. When I saw my doc in late May I told him I felt like I was doing, overall, better than I had in a while. Though I quickly get short of breath if I try to run, I can walk long distances without too much difficulty. So he ordered a routine echo cardiograph (an ultrasound of the heart). Now, usually, after he looks at the echo cardiogram, he says something like, “Looks good, see you in six months.” But, this time he said, “Hmm, let’s go in the other room and talk.” I didn’t like hearing that.

It turns out that my mitral valve is indeed deteriorating now, and it may be that I really am getting to the point that I need open heart surgery. That’s just so hard to believe, since I feel so relatively normal, frequent fatigue notwithstanding. But things have changed since my mother had her mitral valve replaced twelve years ago. First, they now try to repair the valve rather than replacing it. That’s wonderful when they can do that as then you don’t have a metal valve in your heart and don’t need to take a lifetime’s worth of blood thinners. Secondly, they now try to do any needed surgery before you absolutely “need” to have it done, as you’ll be healthier and the outcomes are generally better. So, they won’t want to wait until I’m in heart failure and sick from my cardiac disease before they do the surgery. The issue, then, is when am I about to go into heart failure and “need” the surgery? There’s a certain amount of guesswork involved in this and if any surgery needs to be done in the next year to eighteen months or so, it needs to be coordinated around my next chemotherapy. And when will that be? Well, we don’t know that either.

So, what will happen with both of these issues is that we’ll follow them and see what I need to do first. If it’s the chemotherapy, I’ll have to hope that my heart doesn’t get much worse during the months of chemo, because the cardiac surgeons won’t touch me if I’m doing chemotherapy. But if my heart does get worse during chemo, then we may miss the window of opportunity to have the surgery done before I go into heart failure. If I need the heart surgery first, I’ll have to hope the leukemia doesn’t relapse too fast and cause me to need chemotherapy while I’m recovering, as that really could impact my recovery. Anyone know a good fortune teller?

Anyway, while we’re waiting to see what happens, I’ve signed up for two more half marathons, one in Denver in October and another in Dallas in December. We’ll see if I actually get to compete in these events.

Let me end with some good news. Crazy news, actually. As I’ve already told some of you, whenever I see a charity or some other worthwhile organization selling raffle tickets, I buy a few. I have bought raffle tickets for trips to Germany, for handmade quilts, for vacation packages, for meals at fancy restaurants and so forth. I never win anything and that’s okay. I just feel like I’m supporting the charities with my raffle ticket purchases and I don’t mind doing so. So when the Ft. Worth Symphony Orchestra had a raffle recently I bought some tickets. I already support them as a season ticket holder and as a donor anyway, so why not buy some raffle tickets?

Well, on July 6th I got a call from the president of the Symphony. I wondered if I was behind in my pledge for the year or something. But, no! She called saying she had good news. At the annual 4th of July concert in the botanical gardens in Ft. Worth, they had drawn the name of the winner of the raffle, and the winner was me! And so, what did I win, you ask? I won a completely restored 1968 Cadillac convertible, black paint with black leather interior, chrome wheels and “power everything”. This thing is huge! It’s about 18 to 19 feet long and has a 7.7 liter V-8 engine that puts out about 340 horsepower. Now, that’s all well and good, but I have no place to put it. I’m currently looking around for a place to park it, as we only have a two car garage and we already have two cars. We can’t generally park cars on our driveways around here (home owners’ association rules, of course). So, it’s going to be interesting. Fun, but interesting.

And that’s all for this update. But there’s always more.

Dave

The Leukemia Roller Coaster

2010-03-06T22:15:00.001-06:00

Dave’s Great Adventure, Book Four

Chapter 1, Verse 1

March 6, 2010

I had written a follow-up story to add to my DGA series. All I had to do was proof read it, polish it a bit and send it out. I mentioned all the good news we’d gotten. Then we got a phone call.

Our trip last month to M. D. Anderson in Houston was uneventful. I enjoy the trips out there as I like the “road trips” and the drive. Interstate 45 isn’t the most scenic highway in America but it’s a nice, open and fairly lightly traveled road, where you can “exercise” your car, if you care to do so. This prior autobahn driver likes to “exercise” his car when given the opportunity! Plus there’s some pretty good barbeque to be had along the way.

The visit in the Leukemia Clinic went very well indeed. I had some blood drawn the day before the actual visit and all the tests that had been completed were normal. That’s a nice thing when my blood tests have been abnormal for so long. My physical examination was normal, too. In fact, things were so normal that my doc, Dr. Keating, said I could wait for a year to come back! Whenever your cancer doc says you can come back in a year, that’s good news indeed. I did mention that I was still having somewhat of a mental fog, the “chemobrain” that I have mentioned on several occasions, which makes it hard to concentrate and multitask. It’s a bit like having ADHD, I suppose, as I have trouble reading a whole newspaper article before I want to skip to something else. And I can’t usually do the MENSA quizzes in the airline magazines anymore. Anyway, they offered me Ritalin to treat the problem, but I declined. I think that makes you rather hyper. Kathy doesn’t need to put up with me being hyper, too.

Things were so normal that after my physical exam was done, checking my lungs, heart, lymph nodes and such, they even canceled the bone marrow biopsy that was scheduled for later in the morning. Now, as much as I enjoy reading the clinical pathology reports on my bone marrow biopsies, I didn’t miss getting my hip bone “drilled” again. We decided to do a test called a “flow cytometry” instead, a blood test that examines the white cells looking for signs of leukemia.

While I was with Dr. Keating I asked him about the significance of the negative PCR test which had shown up on my bone marrow biopsy last August (which could find no evidence of leukemia at the molecular level). He told me that with the mutated gene I had (see my story entry [below] from September 13, 2006) and a negative PCR test, I had probably a 75% chance of being in remission in TEN YEARS! What incredible news that was. What a “high” you get when you hear things like that!

So, leaving the clinic in a great mood, we went by the lab to get my flow cytometry blood drawn and then headed back home.

But a few days later, I got a letter from the leukemia clinic saying I was to come back, not in a year, but in six months. I figured there had been a mistake and called the research nurse, who handles my case. I got her answering machine and so left a message asking about the six month visit and, additionally, if she could mail me a copy of the flow cytometry test results, as they never come back until I’m long gone from Houston . Later that day Kathy and I were out at her physical therapy appointment, since she’s still having those three times weekly following her second knee replacement surgery. During our absence my Houston nurse, Ana, called back and left me a message, saying that, yes, six months was the correct interval and that I should call her to talk about the “flow.”

Now, it’s not generally good news when you’re asked to call back to discuss a lab result from your leukemia doctor’s office. When things are normal, the message usually is, “We’ll put a copy of your labs in the mail.” So I called her back. Ana gave me the unexpected news that my flow cytometry test, after being absolutely negative for the last eighteen months, was again positive, and showed the presence of leukemia cells. This was completely, totally unexpected, as I’d been doing so well. I had the negative PCR test just six months previously and I had otherwise normal blood tests. But the flow cytometry test can detect a single leukemia cell among something like 10,000 normal white blood cells, and apparently now seems to be showing about 2% abnormal cells. Wow! From such a mental high with the good news of the previous week, to such a low, finding out that the disease is still stalking me. Looks like I beat the odds, in a way. I’m in the other 25% that won’t be in remission in ten years.

But these highs and lows are what this disease has been doing to me for years now. I was so very low when I found out I had leukemia; then high when I first went into complete remission, imagining that I might actually be cured. Then low again when it recurred a year later. Then high again, but not quite so high (because I’d been fooled once before), when I went into remission again after my second course of chemotherapy. Then low when it came back yet again in eighteen more months. But, then after this most recent aggressive, experimental course of novel chemotherapy which made me PCR negative, I was very high, again deluding myself into thinking I might either be cured or have a long, durable remission. And now…low again. But, there will be highs again; I just know it.

So, for now we wait. I’ll be getting blood tests every couple of months or so to see how rapidly my white blood cell counts go up. I’ll be seeing my local doc in about a month and seeing Dr. Keating again in Houston in six months, unless things change more rapidly than expected. It’ll be interesting to see what he thinks we should do the next time we need to treat me. We’ve pretty much used up the “easy” things, with the three experimental therapies we’ve tried. But, Dr. Keating mentioned to me in another conversation last year that his group expected to begin clinical trials on yet another experimental therapy sometime this year, one that they thought might lead to a cure. That should be interesting, and perhaps I’ll qualify for that new drug protocol. Plus, we can still try a bone marrow transplant when all else fails, though that entails some significant risks.

I previously mentioned that during my remission I had gotten more active in the Team In Training, and had done a few half marathons as fund raising events for the Leukemia and Lymphoma Society. And in January, I signed up for yet another event which I expect to do in June. But even though I’m now relapsing and the disease is returning, I still hope to be able to complete this event. I have pledged to raise over $3000 this time, and I would like to ask for your help in raising this amount. I plan to contact many of you individually, but if you’re able to help me with my task at this time, I’d like to ask you to go to my donation web page and help me by donating whatever you’re able. No amount is too small. Like I told my teammates recently, I hope the researchers can find a cure for this disease in my lifetime. But trying to find a cure will be very, very expensive. Please help me raise some of the funds that it will take to cure this disease.

http://pages.teamintraining.org/ntx/rnr10/deckberg

Thanks for any help you can give me and the Leukemia and Lymphoma Society. I am deeply and personally grateful for all the wonderful folks who have been helping me, praying for me and supporting my causes over the last several years. I hope I can count on your support in the future.

More to follow…there’s always more, isn’t there?

Dave Eckberg

Overdue Update; Things Look Good

2010-02-12T20:15:00.002-06:00

Dave’s Great Adventure

Book Three, PS3

February 12, 2010

Recently my mother received a very late Christmas card and letter from some elderly friends of many years ago. The letter started out, “I better get a letter out to my friends or else everyone will think we’re dead.”

That’s rather where I am right now. I have planned an update, have started composing an update in my head, and have promised many friends that an update was coming…for many months now. As I’ve said in other delayed reports in the past, when I am silent for too long, some folks have to fear for what is going on, and so I have received a few tentative “How are you doing?” type messages, to which I have apologized for being so tardy and promised to get a message out. I have been busy, but not so busy that I couldn’t have gotten at least a short message out if I had just sat down and done it.

Anyway, the short answer to the question about how I’m doing since I completed my last round of chemotherapy is, “Just fine!” I have been in complete remission now for almost 19 months. That’s significant, as I’ve now been in remission for a longer period of time than ever before, my previous long remission having been 18 months after my course of intense therapy in March 2004. And although I have had a return of some of the “chemo brain” effects, with problems remembering things and in trying to multitask, my strength is as good as it’s been in many years, as I’ll tell you in some following paragraphs.

And the remission is even better than “just” an eighteen month remission! I had a bone marrow biopsy last August 2009 and at that time my docs at M. D. Anderson couldn’t find leukemia in my blood, or in my bone marrow, and couldn’t even find any evidence of disease at the MOLECULAR level with a test called a PCR probe (polymerase chain reaction)! I know of another CLL patient, a journalist who also sees Dr. Keating (my doc at M. D. Anderson), who achieved PCR negativity ten years ago and still is in remission. That’s not to say he’s cured, but that’s an amazing stretch of remission. In fact, he says in his writing that he is, for all intents and purposes, cured. But, I imagine that he still gets tested periodically. Maybe I’ll ask Dr. Keating about him the next time I see him and see if our doc thinks he’s cured.

Now, I’m very, very happy to be PCR negative, but I still have to go back and be tested periodically. In fact, I have to go back to Houston next week for yet another bone marrow biopsy, to see if there’s any evidence that the disease has returned. Wish me luck!

Several things have happened over the past year since I last sent out an update, things that many of you may find of interest. The first concerns my wife Kathy, whom many of you know. Now, Kathy has cared for me through every day of every course of the therapy I’ve had since I got sick back in 2002. Well, it has been my turn to care for her recently. Kathy has an inherited trait for degenerative arthritis and has had increasing pain in her knees in recent years, just as her mother and sisters have had. One sister and her mother ended up with joint replacements and so, in the last few months, Kathy has had both knees replaced, one in September and the second one last month. She is recovering very well and things are on track for a complete recovery soon, but her surgeries have given me the opportunity to care for her as she has done for me for so long. She’s currently going to outpatient physical therapy and is doing just great, less than four weeks after her second surgery. She rarely even uses a cane anymore. I’m not much of a househusband but I’ve been able to be trained to do laundry, clean up the kitchen and warm up some food while Kathy’s been laid up.

Back to my chemotherapy; I did very well during the time I was getting the drugs and in the months thereafter, except for a bad bronchitis/pneumonia I had about a year ago, but my immune system has taken quite a hit. One of the drugs I took, called Fludara, specifically targets white cells, which of course are the cells which help protect me from infections. Well…. Last year Kathy and I went to Antarctica on an “expedition,” which was just wonderful. I recommend such an adventure to all of you. But, during the course of our trip, we were in daily contact with penguins and their, uh… guano… or excrement. The shores around their colonies were often coated in the stuff. Now, we had rubber boots and were protected from the stuff (unless we slipped and fell in it, as some folks did) but at the end of each trip to the shore, we had to take our boots off. And even after the boots had been cleaned upon our return to our ship, they had some remaining “stuff” on them. We inevitably must have gotten some on our hands as we removed our boots, at least on a microscopic level. Anyway, Kathy probably got some penguin poop on her hands, and then into her eyes, because she developed a bad eye infection. The ship’s doc had some simple antibiotic eye drops which slowly seemed to take care of the problem, until we got home, when it seemed to recur. So we went to a doc here in town to have her re-evaluated and get some different antibiotics, which worked quite well.

So, just as she was getting over her infection, I got it. I treated myself with the same stuff that had worked so well on her, and it did work well. But now, it recurred in Kathy. And then when I finished my antibiotics, I got it again, too! We ping-ponged the infection back and forth for about ten weeks, despite cleaning the whole house, washing all the bed linens, washing down sinks, light switches, counter tops, etc. Then, during the time all that was happening, my ophthalmologist took a look inside my eyes and discovered that I also have a fungal infection called histoplasmosis in/on my retinas! Now, there is no good treatment for this. If it starts to spread, as it can, they can use lasers on the spots (destroying the retina with the infection) or inject the spots of histoplasmosis with drugs, like the Avastin I was getting during my most recent chemotherapy. So far, in the months since this new infection has been discovered, it has not seemed to spread at all.

And, during this time, I started having clusters of growths on my hands and right forearm. That was curious, so I went to a dermatologist to have a biopsy done, which showed that I was developing warts on my hands and arm. I’ve had some problems with warts on my hands since I first found I had leukemia, and getting warts is not uncommon for chemotherapy patients since our immunity is compromised, but I was getting them in places I’d never had them before. So, I’ve been going to my dermatologist for months now and have had probably a dozen treatments to destroy over 20 warts, and we still have a few persistent ones to deal with.

And then, as if the eye problems and the warts weren’t enough, the irregular heart beat I’ve had for years got much worse about this time. I was having irregular beats throughout the day, predominantly a rhythm called “bigeminy,” where you repetitively have a normal heartbeat immediately followed by an abnormal heartbeat. This led to several consultations, prolonged heart monitoring and eventually starting more medications, along with talk of possibly going into my heart to “ablate” the abnormal part of my heart that is causing the problem. I’m doing much better now, and my heart rhythm is more normal than when this problem first developed, but I still have frequent problems with the bigeminy. I’ll be seeing my “arrhythmologist” again in a couple of weeks to see what our next step is.

Last year, just before I stopped writing, I had mentioned that I was doing more and more with the kind folks from the Leukemia and Lymphoma Society’s Team in Training. I had started doing some of their events and had even signed up for a half marathon. I’m extremely pleased to tell you that I was strong enough to be able to complete that half marathon last May, and then in a fit of irrational exuberance, I went and signed up for half marathons in Denver in October and again in Dallas in December. I’ve been raising funds when doing these events and have been pleased to have completed both the half marathon walks without great difficulty, but also have been able to raise more money for the society. And, I’ve been doing something even tougher (for me)…I’ve been doing a bit of public speaking at some LLS events, at recruiting meetings and at pre-marathon dinners. It’s tougher for me, probably, because I’m prone to terrible stage fright when in front of crowds, but I’m happy to say that I’ve done reasonably well in my attempts at public speaking.

And, I’ve gotten so “into” these events that I’ve signed up for yet another half marathon for later this year. In June I plan to do the San Diego Rock and Roll Half Marathon as yet another fund raiser for the LLS. I think that I’ll take Kathy out there and I’ll do the event and then we’ll have a little vacation out there as well.

And one last thing; my mom, whom many of you know, just celebrated her 90th birthday last week. Happy birthday, Mom!

And I think that’s enough of an update for now. I’ll be back when I have more news. In fact, I may be back rather soon to report on the results of my upcoming bone marrow biopsy.

Bye now,

Dave

Setbacks

2009-02-17T10:48:00.000-06:00

Dave’s Great Adventure
Book Three, PS2
February 17, 2009

You know, things had been going so well. Probably too well. I couldn’t expect things to go perfectly forever, could I? I got through six months of a new, experimental chemotherapy without any real complications. Sure, I had some side effects of the drugs, with headaches, weakness, body aches and the like, but no complications, really. I’ve seen folks around me, in the chemo rooms, have complications with their blood pressure dropping to dangerous levels, I’ve seen chemo failures, I’ve seen dangerously low blood counts as a result of chemo, but I’ve managed to either escape these problems or, in the case of very low blood counts, have escaped any problems resulting from them. And I haven’t bled into my lungs, had a bowel perforation or developed any brain damage, as can happen with the Avastin. I’ve done well.

The last time I wrote I had just completed (walked, really) a five mile leg on a marathon relay team and was feeling just great. In fact, the very next morning I went out and walked seven miles. That same day I also saw a flyer about an upcoming 15K (about nine miles) run/walk and figured I should be able to do that, and signed up for it. I was perhaps a bit too confident. A couple of things have happened recently that are results of the chemotherapy and/or my disease that have really slowed me down and set me back in my training and recovery. The first takes a bit of explanation and a little history.

After my early chemotherapy, and especially after my second round in 2004, my marrow was severely damaged, intentionally to be sure, but nevertheless, severely damaged. As it reconstituted itself, my immune system was similar to that of a baby, “seeing” things as if I was encountering them for the first time; germs, protein, allergens, etc. As a result, a strange thing happened to me. After drinking milk all my life, I became allergic to it, and fairly seriously so.

I didn’t realize it at first, because I was taking antihistamines every day just because I was congested from pollens and dust in the Denver air. I noticed occasionally that I had some tingling in my lips after eating frozen custard, which I loved because it was 10% butterfat (!) but I didn’t pay any attention to the tingling because it went away shortly after I enjoyed my dessert.

But I was very tired just about every day, and I didn’t know if it was because of the leukemia, a lingering effect of the chemotherapy, or perhaps a side effect of some of the drugs I was taking, like the Claritin and Sudafed. So, I stopped all these drugs just to see if I would feel any better. And about that time I ate some cheesecake and drank some whole milk. I started feeling strange.

I first began wheezing and breathing very hard, and then I developed welts all over my body. Kathy was worried about what was going on, because at the time I was also being treated for bronchitis, and suddenly I wasn’t breathing very well. I gave her my usual “I’m fine!” routine but at some point she said that if I didn’t get in to the clinic to be seen she was going to call 911! I guess she was serious.

So I went to the clinic that Sunday morning where they diagnosed my condition as an allergic reaction. Because I’d been taking erythromycin for the bronchitis, my docs decided I was probably reacting to it. It didn’t seem likely that it was the cheesecake or milk because, after all, I’d been eating and drinking milk products all my life. On the other hand, I’d had e-mycin multiple times over the course of my life and hadn’t had any problems. In any case they stopped the e-mycin, gave me injections of Benedryl, shots of steroids and a steroid dose-pack to take home with me, and away I went.

Meanwhile I went back on the Claritin because I felt worse off it than on. I didn’t notice any change in my fatigue while off the drug so I didn’t see any reason to suffer from the congestion too. And things went along okay for a while, but I still had the occasional tingling, and a little swelling of my lips, after frozen custard at our favorite little shop, CJs Frozen Custard in Lone Tree, Colorado. Great little place and wonderful people that run it too. If you live in Colorado, give it a try some time. Anyway, nothing else happened after the slight tingling I sometimes felt. [This story is getting too long…which is not an uncommon phenomenon when I write. I’ll try to “cut to the chase].

At some point I again stopped my Claritin, don’t remember why, and within a short time had some bad reactions after eating more frozen custard again after eating some creamed beef made with whole milk. I had swollen lips, swelling in the back of my mouth and in the soft palate and hives all over my body. This time I wasn’t on erythromycin so we couldn’t blame it on the antibiotic. I was sent to the allergist for testing and was laid on my belly while they injected my back with 99 shots of various proteins, checking to see what I would react to. One injection stung like a bee sting…it was milk! That was amazing to me (though I already suspected it) because I’ve drunk milk, eaten cheese, butter and ice cream and put cream in my coffee all my life.

My allergist said he had seen similar problems in folks with HIV who developed AIDS, which wiped out their immune systems, and who then were recovering after using the anti-retroviral medications. I have a similar situation as my immune system has been severely compromised by the drugs I’ve taken to wipe out my abnormal white cells, the leukemic cells, but which also take out just about any white cells they come across. My new lymphocytes didn’t recognize milk proteins as “okay” and developed abnormal antibodies to them, resulting in the allergic ractions.

So, knowing that I was allergic to milk (but not cheeses, sour cream, ice cream, for some reason), and knowing that the very weak antihistamine Claritin was somehow protecting me from these bad reactions, for the most part, I went back on Claritin daily, for years. I did well.

Skip to late 2008. I was having chronic sinus infections, which goes with the leukemia. I saw an ENT doc about it here in Denton and he wasn’t happy that I was taking Claritin (and some other antihistamine, too) on a daily basis. “Thickens your mucus,” he says, and he wants it thinner so it’ll drain better. “Cool,” say I, because I haven’t had any problems with milk in years now and I think that I’m “over” the allergic reactions by now and it’ll be one less pill for me to take every day.

On Christmas day we were at our daughter and son-in-law’s home for a Christmas brunch. She made a pluck-it cake, a family favorite, for the brunch. I decided to have a glass of milk with it, just a little glass of milk. Man, within minutes my lips had started swelling, followed closely by swelling in the back of my throat. Then the hives started. I started taking Benedryl, which Kathy carries with her everywhere, and did pretty well, though the swelling in my mouth, as usual, didn’t totally resolve for about 36 hours. Fortunately I continued to breathe well so we didn’t have to use the epinephrine injector pen, which Kathy also carries with her everywhere, but I now know that I’m still allergic to milk and will likely have to be on antihistamines (for life?) or avoid milk. I can’t (don’t want to) avoid milk! Or frozen custard! Hell of a deal…. I remain mystified that such a weak antihistamine as Claritin is all it apparently takes to prevent, for the most part, any serious reactions to my exposure to milk proteins. I do, uhh…, test it from time to time by going to the local Culver’s Frozen Custard shop in nearby Flower Mound, Texas. So far the Claritin is still protecting me.

And that, in just three pages, is the first problem that cropped up.

Part II: Since I’ve been sick and have had chemotherapy, and have been immuno-compromised, Kathy and I do everything we can to avoid sick folks. We avoid crowds, known sick folks, anyone who is coughing, I don’t touch doorknobs if I can avoid it, and I wash my hands obsessively. But sometimes you just can’t do these things.

Over Christmas we had a family reunion here in Denton. Most of the extended family was able to gather here and visit with Mom, who was spending her first Christmas in Texas in many, many years. Now, you can’t really avoid crowds when you’re hosting a family reunion. And on top of that crowd, we had a couple of holiday functions in the neighborhood that we wanted to attend, because it’s nice to be with the neighbors from time to time. Some folks were coughing. Normally we’d have stayed away from them, but I figured I must be doing better; I hadn’t had a cough or cold in a couple of years. Well, as it turned out, I really wasn’t doing any better (just like I wasn’t over my milk allergies), it was just that Kathy had been watching over me and keeping me out of trouble by avoiding crowds. So, after being around lots of folks, I got sick. I really got sick.

A few days after I signed up for the 15K walk, I started feeling sick and the “feeling sick” progressed to “being sick.” I was as sick as I’ve been in years, with the cough that has been going around so many parts of the US. After being short of breath for about ten days (I don’t give in easily!) I went to see a real doctor. My doc listened to my chest and gave me a diagnosis of pneumonia! He prescribed a very powerful oral antibiotic, Avalox (moxifloxacin), and sent me on my way. The next day, my mom, who had also gotten the illness, was coughing up so much stuff she was gagging on the phlegm. I took her in too. My doc gave her a simpler antibiotic (doxycycline) because she is on blood thinners which are affected greatly by most antibiotics. Mom was better in about three days.

A week later, I was worse. I went back; my doc listened to my chest again, mentioned a possible hospital admission, and gave me a shot of steroids for my wheezing, a steroid and bronchodilator inhaler and the same antibiotic he had given my Mom the week before, but at a higher dose. I was feeling, not well, but better within a few days, and so, because I had now infected Kathy with the cough too, I wrote her a prescription for the same antibiotic. She got better within days. [The fact that the disease responded to doxycycline and not the Avalox probably means it was not a “regular” pneumonia, caused by pneumococcus, but more likely a mycoplasma infection, or maybe even something like Legionnaire’s disease.] I slowly got a lot better, but after I finished the ten days of antibiotics, I started relapsing. Man, I didn’t want to go to the hospital, so I wrote myself a prescription for the same antibiotic, the doxycycline, again, but for a longer time. Over time, another week or so, I finally recovered. But the pneumonia/ bronchitis, or whatever it was, took the month of January from us. I’ve just proven to myself that I can’t break our rules about avoiding sick folks, whether they are friends or family. My body can’t tolerate it and is still just too weak to take chances. I just don’t have enough effective white cells.

And that’s how I spent my Christmas vacation. And all of January, too. In other leukemia related developments, my blood counts are either staying stable or getting slightly better. I’m still just a little anemic but not enough to bother me too much and my platelets are slowly, very, very slowly, increasing, up to 84,000 at last count earlier this month (from 40,000 just after we finished chemo in July, normal being greater than 150,000). My white count is still sub-normal at about 2,800 (normal being over 3,000). That’s both the good news and bad. It’s good as when my counts start climbing again, the disease is probably recurring once again. It’s also the bad news because I need white cells so as not to get as sick as I was in January!

I’ve started walking again and have been inspired by my early successes in the short 5K and 5 mile runs, to sign up for a TNT fund-raising half marathon in May (check out the link below; if you can spare $25 or so, I’d very much appreciate it, and so would many other folks with leukemia). We’ll see if I can actually do it. I’m walking pretty well with good tolerances to the distances (back up to five miles or so thus far) but I notice that after the walks, I frequently develop general body aches, not in muscles actually, but all over my body and sometimes I feel sick for a day or two afterwards. I’m wondering if this is some prolonged chemo effect and if it’ll wear off. I’ll be asking my oncologist when I see him again.

I have to wrap this up and get it into the electronic mail, as we’re leaving on a long-planned trip to Antarctica later today. Typically of me in my retirement years, I haven’t even finished packing so I have a lot to do today. In former times I’d have had multiple lists made and things out and organized days ahead of time, but no longer. Hopefully I’ll have everything I need ‘cause once we get down to Antarctica, there are no drug stores, no shops, and nothing where one can pick up the things you left behind.

Thanks to so many of you who wrote messages to me after my last letter; my cousin Curtis in San Francisco, Jane in Iowa, Amber in Houston, Liz and Steve in Englewood, CO, Brad and Ann in Iowa, and many more. I love hearing from you guys, and my failure to respond was a function of Christmas closely following my last chapter and then the month of illness that followed, which allowed all your messages to get buried in the e-mail queue. It wasn’t for lack of appreciation of your messages, which I really love to get, but for lack of discipline on my part.

And that’s just about all for now. There’s always more later. Perhaps a report on Antarctica in the coming months….

Dave
http://pages.teamintraining.org/ntx/ntrails09/deckberg
www.adventureswithleukemia.blogspot.com

“The whole aim of practical politics is to keep the populace alarmed and hence clamorous to be led to safety, by menacing it with an endless series of hobgoblins, all of them imaginary.” H. L. Mencken

Update, Apologies and New Goals

2008-12-19T22:38:00.002-06:00

Dave’s Great Adventure
Book Three, PS1
December 19, 2008

So many things have happened…so many things.

I’ve tried to sit down on several occasions to write up an update on how I’m doing and what’s going on here but even after starting several drafts, I just couldn’t get anything substantial written. I was always too tired, too lazy, too busy or too chemo-brained (that’s my catch-all excuse when I fall behind in my responsibilities). Or maybe it’s been a combination of all those excuses.

I owe many apologies. First, to all my friends who have been wondering and worrying about me. I mean, when you’ve been getting regular updates from someone who has leukemia and who is going through chemotherapy, and then the messages suddenly stop, you have to wonder what has happened. A lot of unpleasant things are certainly possibilities in these circumstances. I’ve gotten some inquiries from some friends asking if I’m doing okay or not. I shouldn’t have put my friends in the position of having to ask.

Let me deal with that first. I am doing just great. I have been busy, I have been tired, and I have been lazy, but I am doing very well indeed. I am in complete remission from the leukemia (again). I had another bone marrow biopsy at M. D. Anderson in Houston in September and they could find no evidence of residual disease for now. That’s the very, very good news. The chemotherapy wiped my marrow clean. Now, the other side of that coin is that they also could also find almost no B-lymphocytes. All my leukemic cells are abnormal B-lymphocytes so it’s good that they are gone, but normal B-lymphs are the cells that make antibodies. So I need some of those guys. But even though the docs at M. D. Anderson couldn’t find many in the bone marrow specimen, I know I must have enough around somewhere in my body because I haven’t gotten terribly sick as I would if I had absolutely no B-lymphs left and wasn’t making any antibodies.

My blood counts, for those of you who may follow this stuff, remain low. That’s to be expected as the chemotherapy works by damaging the stem cells in the bone marrow and lymph nodes that make blood cells. So my red blood cell count is a bit low at 34% (normal for a male is more like 45%), and my platelets are low at 79,000 (normal being 150,000 to 350,000 or so) but that’s up from the 40,000 they were at the end of my chemotherapy. I was getting a lot of bruises when the platelet count was that low, but I’m getting far fewer now that those numbers have recovered a bit. And my white blood cell count, which was almost 100,000 when we started the chemotherapy last February, is staying between 2,000 and 3,000 which is also lower than normal. But that’s a good thing, under these circumstances.

I don’t know how long I can expect to remain in remission. The first time I had chemotherapy I was in remission for a year. After my second course of chemo I was in remission for about 18 months. But both times, when the disease returned it did so very slowly and I didn’t require more drugs for many months even after we first found evidence of recurring leukemia.

I have regained much of my strength, and faster than I expected to, but I’ll talk about that a bit more in telling you what I’ve been up to. What I haven’t regained totally is my mental capacities, because of the “chemobrain” I sometimes joke about. I feel slow mentally much of the time, which really is part of the problem with trying to write up a coherent letter. I can have many thoughts in my head but they routinely disappear when I sit in front of the computer to try to write. Plus, I can’t keep more than one thought in my mind at a time. I can’t multi-task, and that’s one major reason I retired. I couldn’t keep several thoughts in my mind at one time and you have to be able to do that when you’re taking care of patients. You have to remember what the patient is telling you, what questions you need to ask, what tests you need to order, what drugs to order, what instructions you need to give the patient, and more. I noticed some problems with this after my first round of drugs back in 2002 but it wasn’t too bad. After my second round in 2004 it got worse and I ultimately couldn’t keep up safely and had to leave my job.

I was feeling like the mental fog was lifting somewhat a couple years after I retired, but now it seems to have returned. Fortunately, my new job as a retired guy doesn’t place too many strains on me. I do have problems remembering things and I can’t tackle more than one task at a time, but other than that things aren’t too bad.

Back to the apologies; I want to apologize to so many of you who helped me raise money for the Light The Night walk that Kathy and I and our family did in October. My intention was to send each of you a personal thanks but I couldn’t keep up and most of you only got the automatic response from the Leukemia and Lymphoma Society. Plus, many of you were subjected to my false starts and erroneous letters when I was trying to send out my requests for donations. I really was in a fog! But despite my mental fog and e-mail missteps and with your help we raised over $3000 for the LLS. Thank you for all your help.

The last time I sent out an update, in July, I was in the midst of my last round of chemotherapy and my step-dad had died. The timing of my infusions was unfortunate as I wasn’t able to go to Iowa to be with Mom and the family during this time. So, I stayed in Texas and recovered with much the usual side effects and over much the same length of time, with the weakness, headaches, fatigue and so forth.

About a month after my step-dad died Mom decided she wanted to move to Texas. We had discussed this possibility in general terms in the past, as none of her kids live in Iowa and because most of her immediate family now live in Texas, clustered around the Dallas/Ft. Worth area. So we’re now happy to have my mother living in Denton in a senior’s apartment complex and being close enough to visit on a frequent basis, after years of only seeing her for a few days a year during the time she lived in Iowa. Mom has been very busy getting adjusted to the new surroundings; she’s had to get new doctors, a new dentist, new banking, new health insurance, new friends and a new way of life. But she’s settling in pretty well, especially considering all the changes that she’s gone through since Lloyd died in July.

As I recovered from my last round of drugs, I started to walk around the neighborhood, as I had frequently done before the beginning of my drug regimen. I enjoy being outside and need the exercise anyway. I found, however, that having been pretty much sedentary for the six months of the chemotherapy had done bad things to my muscles. Just walking around the neighborhood was a chore, and my legs were sore after my walks. But gradually I noticed my stamina increasing and the muscle soreness decreasing and I was able to walk longer and longer distances. By early October I was able to walk about three miles without much difficulty. This was about the time that we did the Light The Night Walk, which is just a couple of miles, short enough that the grandkids walked it with us.

The week after the Light The Night walk Kathy and I went to Colorado for a very short trip to cheer for our friends Lou and Joan Henefeld who had signed up and trained for the Denver Marathon, working through the Leukemia and Lymphoma Society’s Team in Training (TNT). They had never done a marathon (26.2 miles) before yet they worked for months to get physically ready for the marathon and they worked regularly sending out letters and e-mails to raise funds for the LLS. They did this all in my honor, as a friend and survivor, which I found very humbling. They did just great walking the marathon course and between them they raised over $8000! They are just amazing folks.

Well, I started thinking about what they had done and wondered if I could even come close to their efforts. I started thinking that maybe at some point I could at least do a half-marathon, a distance (13.1 miles) I hadn’t walked in several decades. But I had been walking more and more easily in the previous month or two and was able many days to do three miles, so I started to get serious about working up to a half-marathon.

A few weeks after we returned home from cheering on Lou and Joan, and their TNT teammates, as they ran and walked the marathon course in Denver, I signed up for a 5K (five kilometers, or about 3.1 miles) run sponsored in Ft. Worth by TNT. I did fine in that event, though only with a very loose interpretation of the operative word “run.” I walked at a brisk pace and finished the short course in about 46 minutes or so. I was amazed to see that a number of my teammates for TNT got up early on Sunday morning and drove to Ft. Worth to cheer me on! Now, the fact that I did the “run” in blue jeans, long-sleeved knit cotton shirt and deck shoes was a source of amusement to my TNT teammates so I’ve had to go out, at Kathy’s (and our coach’s) instruction, to get more serious running shoes and clothing.

So, after the 5K event I was walking with TNT teammates who were getting ready for the White Rock Marathon here in Dallas. I found that they were also forming some relay teams and that I might be able to get a spot on one of them. I was happy to offer to be a part of a team if a position opened up, which it did, just about two weeks before the marathon. I was given a five mile leg of the marathon, which was a distance I hadn’t worked up to yet, and didn’t get to do before race day, but last Sunday morning, our team (“Survivors”) completed the race and I did my first five mile walk in many years. We were called “Survivors” as the team consisted of me, four months out of chemotherapy, another blood cancer survivor named Niki, who was just six months out of a wheelchair, a young man with cystic fibrosis (which didn’t really slow him down), and two other guys who had great running times and kept up our overall pace. I was happy to be part of this team and to be able to complete my assigned five miles.

Which brings me back to goals. At the first of this year my immediate goal was to get through the chemotherapy regimen which I was facing and to hopefully get into remission. That goal has been achieved in fine style. I hope it lasts for a few years. And now that I have been able to complete my five kilometer and five mile events, I have set a new goal, for myself, that of doing a walking half marathon in the coming year. To that end I will be walking longer and longer distances in the coming months to see what my limits are. I hope I can soon report back to you that I have been able to complete a half-marathon before the end of next year.

And that’s just about all the news from here. I’ll try to get periodic updates out to you, my friends, and let you know how things continue to go as I get my monthly blood counts and every-three-month doctor appointments.

And my next immediate goal is to get Christmas cards written!

Merry Christmas, Happy Hanukah and Happy New Year to all of you,

Dave

dreck@prodigy.net

A Very Short Update

2008-08-09T19:24:00.001-05:00

Dave’s Great Adventure, Book Three
Chapter Six, Verse One
August 9, 2008

I want to send out a quick status report to let all of you know how I’m doing. When I’m silent too long many folks, with good reason, start to worry that I’m not doing well and that there are problems. I’m actually doing well, but there have been problems.

The day I sent out my last message, I had to cut it a bit short and didn’t spend a lot of time polishing it, as I typically like to do, and I haven’t sent out anything since. The reasons were twofold; that very day my platelets finally got “high” enough, at about 80,000, to allow more treatment (remember that normal is about 150,000 to about 350,000 or so). But even at my relatively low level, the folks at M. D. Anderson allowed me to start my sixth round of treatment. And so I did, and I got sick, but now I’m done with all six rounds of this new, experimental treatment. I want to tell you a bit about this last round later, when I have more time.

The second reason I have been silent for the last three weeks is that the day I started my last round of chemotherapy my step-dad, a wonderful and kind gentleman, was discharged from the hospital after a prolonged admission of about two months, but he was discharged to hospice care. Then, the next day, while I was getting my Day Two infusions, he died.

My infusion schedule could have not been worse under these circumstances. If I hadn’t started the infusions we could probably have postponed them, but since I had started them, we couldn’t stop in the middle of the schedule. So I was sick during the time I wanted to be in Iowa with my Mom and my family and relatives for the funeral. My step-dad was such a nice guy that I wanted to be there to show my deep respect for him, but couldn’t. I hated to miss the celebration of his long and wonderful life. He died at the age of ninety-five and I’m pretty sure that, except for the last couple months of his life when he was confined to a hospital room, he enjoyed every year of his full life. I hope to tell you about this remarkable man in a future verse.

Since his death there have been many things the family has had to deal with, one of the primary things being preparing to move our Mom and her belongings to Texas, where much of her family lives. Three of her five children, seven of her ten grandchildren and both of her great-grandchildren live in Texas, and most are clustered around the Dallas-Ft. Worth area, so we’ll be bringing her to town next week. I know she’ll miss her many friends and relatives in Iowa, where she was born, but it’ll be nice for all of us here in Texas to be able to see her so much more often. And even though she was born in Iowa, she’s really a Texan at heart as she lived for decades in San Antonio where she acquired a taste for Tex-Mex cooking. She’ll find plenty of that around here.

Anyway, I’m still recovering from the last round of chemotherapy, am back on the Neupogen because of the usual and expected low while cell counts, and am tired more than I’d like to be, but all in all, I’m doing just great. I’m looking forward to getting back to a more normal life in the coming months, since I won’t be getting whacked with more chemotherapy when I start feeling well this time. I’m going to stop this message at this point and leave you with the promise that in the coming weeks I’ll completely fill you in on my last cycle of poisons in painful, even excruciating, detail. So beware.

Dave
dreck@prodigy.net

“We’re all on the same journey; you can choose to do it with joy.” Sally Hughes Smith, (as quoted in a recent column by Kathleen Parker of the Orlando Sentinel)

Cinders

2008-07-21T21:20:00.000-05:00

Dave’s Great Adventure, Book Three
Chapter 5, Verse 2
July 21, 2008

When our family was very young, many years ago, we did a lot of camping in a great big blue tent.

I’m not exactly sure how we came to be campers because neither my family nor Kathy’s were campers. I did enjoy some camping during my high school years in Germany, when a couple of friends and I would go out in the forests and just lay our sleeping bags on the ground. It wasn’t really legal to camp in the forests in Germany except in designated camp grounds, but we were out where no one could see us and we did no harm. We carried along Korean War vintage army C-rations, which were great fun for teenage boys to go through, because they all included small packs of cigarettes in them, plus petrified bars of dark chocolate which were close to being inedible. We also heated canned soup on Sterno stoves and ate some of the C-ration delicacies; lima beans and ham, beans and franks, turkey loaf, canned bread and the like. Sometime we got lucky and found canned peaches, a real treat. One night we heard a beast of some sort near our little encampment, coming slowly toward us. The rustling in the brush got closer and closer, scaring the heck out of the three teenage camper boys, until the “beast” entered our campsite and turned out to be a “ferocious” hedgehog, all of about ten inches in length. Hey, it SOUNDED a lot bigger than that. Hedgehogs, or “Igels,” as they’re called in German, are supposed to be good luck. I guess our luck that it wasn’t a wild boar!

Kathy and I were married in 1969 and just under a year later I was in Vietnam, leaving her with a newborn to care for. We didn’t plan things that way, but it was for the best as having a child to care for kept her mind off what I might be doing during my year away. I did a little “camping” during my time in Vietnam and was reintroduced to army C-rations, which hadn’t changed an awful lot. However, by now the army had also introduced LRRP (Long Range Recon Patrol) rations, which were freeze dried and lighter to carry around. They were naturally called “lurps” and were highly prized as they at least seemed to taste better than the more familiar C-rations.

When I returned to the states I was assigned, by choice, to the military hospital in El Paso, Texas, then called William Beaumont Army Hospital. As a “reward” for my service in the war I was made the aide-de-camp to the commanding general, supposedly a plum job but one I really hated. I really had very little to do except go around to various functions with the general and his staff and open doors, read certificates at promotion and award ceremonies, show VIPs around, and sit at my desk. Later I got promoted out of that job and got to work around the medical clinics and the emergency room, which crystallized my interest in medicine as a career.

But, on the weekends, if the general wasn’t busy with some function, Kathy and I would get into our light blue 1965 Plymouth Valiant and head north to the mountains and into the Gila National Forest, in southern New Mexico. This was the area Billy the Kid lived in during some of his younger years, and the Indian chief Geronimo and his braves lived in the area as well. The mountains were thick with tall pines and I loved driving the winding roads through the forests. There were also ancient Indian cliff dwellings with which I was fascinated and many, many beautiful places along the Gila River, which was more of a stream really, which beckoned with numerous camp sites. I thought we ought to camp there sometime.

Coincidentally one of the more senior officers at Beaumont was selling all his camping stuff, since he was graduating to a camping trailer. I was just a lieutenant, making maybe $1000 month or something so he gave us a great deal on all of his stuff. We bought all his stuff for $50 and that started our camping career. That’s where we got that big blue tent, which was maybe eight by eighteen feet, with three rooms. It was huge! We started camping in those beautiful spots along the Gila River when our eldest son was just over two years old, back when he was afraid of the stream for fear that there were sharks in it. How did he get that idea? We started camping along the banks of the stream, which was sandy with rounded river rocks. Across the water were large pines, cottonwoods and behind the trees magnificent yellow limestone cliffs rose up a couple of hundred feet. Later we camped all over southern New Mexico, west Texas and up into the Midwest in that huge tent. We had some great times, but Kathy also has very unpleasant memories of trying to cook on our small camp stove while we were camped in the Badlands of South Dakota in that tent and the wind was blowing probably fifty miles an hour.

But our favorite place to camp, above all others, was an isolated primitive area in the Gila (“HEE-la”) National Forest, about two hundred miles north of El Paso. It was great to camp there because our special place wasn’t really even a camp ground. Therefore it didn’t attract a lot of people. It was fifteen miles of bad road off any pavement and was hidden down in a small valley which had a small, intermittently running stream. We sometimes went the whole weekend without seeing another person or car when we were there. It was so absolutely quiet and peaceful that you could hear the hummingbirds zipping around and the calls of the other birds in the area. Since it wasn’t developed and there usually weren’t other folks around, the kids couldn’t hurt anything. They could throw rocks, build dams in the creek, and use the hatchet on tree stumps and to chop up firewood. They could eat with their hands, they could play in the stream, they could get messy, pee in the woods and generally do lots of the things that kids are told they can’t do around the house or in the neighborhood.

The central part of our camping area was always the campfire. It was invariably a primitive fire within a stone fire ring, and we used it for heat, cooking and entertainment. We’d cook hot dogs on a stick or burgers on a small grill which was perched upon the rocks. We could heat up chili or stews in pans set among the coals. After we ate, the kids just loved to play around the fire, adding firewood to make it burn larger and more brightly, melting plastic spoons into long white strands or watching molten blobs of the fiery plastic bomb the firewood, melting pennies on the rocks, and burning the trash we’d generated. It was tremendous fun. As the night got longer the fire would burn down but we’d stir it up to make it blaze again, enjoying the light and heat until it once again started to burn down. We’d stir the coals repeatedly until it got close to time to go to sleep, but by then the bonfire would have been reduced to just a few glowing cinders.

In a way, my marrow has now been reduced to a few cinders as well. We’ve been “burning” my marrow with the chemotherapeutic drugs for over five months now, but whenever my white counts dropped too low, we could “stir up the fire,” if you’ll allow me to use that metaphor, with Neupogen. Generally with a course of that white cell stimulating drug my white counts would go from perhaps 1,200 up to 25,000 or so in just a few days, and they would be mostly bacteria fighting neutrophils.

When I last told you about how things were going I mentioned that my white counts had dropped to about 700, about as low as they’ve ever been. That is a critically low number. In fact, it has been entertaining, in a dark sort of way, seeing the labs folks draw my blood, run it through the Coulter Counter, or whatever device they use these days to generate blood counts, and then quickly hand deliver the results to my nurse with the word “Panic” written at the top. Critically low or high lab test results are called “panic values” as they represent potentially life threatening problems. And you see, whenever the laboratory comes up with any such result, the folks there have the responsibility to get it to the patient’s doctor or nurse immediately. Not until they do are they relieved of the responsibility, and legal liability too, for handling the results. So, they hand-carry my lab test results right to my nurse with something like “Panic, Delivered to Nurse Johnson at 9:23am” written at the top of the sheet. That gets the monkey off their backs.

So, a couple of weeks ago my white counts were (again) at those “panic” levels. But I had planned to go to Colorado for a friend’s wedding the following week. Being closed up in an aluminum tube with 85 other people during a flight to Colorado with a white count of only 700 was a recipe for infections and wasn’t a good idea at all. I was actually surprised when the clinic folks didn’t immediately put me back on the Neupogen, as low as my numbers were, so I called the next day to ask if I could get my counts rechecked in a few more days, rather than waiting the normal full week, to see if the counts were recovering or not. That’s all it took for them to reconsider and put me immediately on the medication. So I went in to the clinic, got my prescription for $9000 worth of Neupogen (manufactured by Amgen) filled, paid my co-pay of $9.00 (amazing!) and went home to begin my daily injections.

And it worked, but not nearly as well as it had been. After the usual five days of injections, my white count was up, but only to about 5,000, not the usual 25,000. The “cinders” just couldn’t generate many white cells this time. But that was high enough, and actually in the normal range, so my doc let me fly to Colorado with “precautions.” I did carry a mask in my pocket and actually would have put it on if I’d seen any germs coming my way. Really! Since my counts generally drop fairly rapidly after I finish the injections, I tried to stay away from too many folks at the wedding, but it was really hard to do with so many old friends around. We also didn’t get out to see our Denver area friends while we were in town as we’d planned because the trip fatigued me more than I expected it to. I did okay, and didn’t get sick but probably wouldn’t have even thought about making that trip if it had been in the wintertime cold and flu season.

But back to the cinders; I’ve now taken a couple more courses of Neupogen since I got back from Colorado and my white counts are looking okay. But my platelets are still low. My marrow can’t make them right now. They’ve been low, in the 60,000 to 70,000 range ever since my last round of drugs. That’s too low for even the M. D. Anderson folks. I was to have started my sixth and last (!) round of chemotherapy last week, but on Monday, and again Wednesday and then last Friday, my platelets were too low. I’m going in again tomorrow to get a blood count and if my platelets have managed to creep up to at least 75,000, we’ll start the drugs flowing. I can’t wait! I say that both with sincerity and, at the same time, with sarcasm, as I don’t look forward to it, but I want to get it done.

The day after I sent out my last little letter an article came out in our newspaper, and likely yours too, questioning the cost-benefit value of Avastin. As I said, it has become very, very popular but is very, very expensive. It is now being used on many folks who really have no hope of survival but it extends their life by a short time, sometimes a few months. How much is a few more months of life worth? Can we put a value on it? Tony Snow was almost certainly taking Avastin for his bowel cancer. He’s one of the first I heard mention using drugs to turn a malignant condition into a chronic disease, yet he died recently, as you know. It’s not a magic drug which can cure everything. In fact, as I mentioned, it really doesn’t cure anything. Genentech sold $3.5 billion worth of Avastin last year. There are probably very few of us, certainly no one I know, who could afford to pay for the stuff on our own, so the taxpayers end up with the tab. How much can we afford?

I’ve got to cut this off. I’ve been trying to get this written for a week or so now, so I’m going to put a stop to it at this point and get it sent out soon. I’ll keep you updated as to how things go. More later….

Dave
dreck@prodigy.net

“Live everyday as if it’s your last and one day you’ll be right.”—Harry “Breaker” Morant, Australian Bushveldt Carbineers

Uncharted Waters

2008-07-03T14:01:00.001-05:00

Dave’s Great Adventure, Book Three
Chapter 5, Verse 1
July 3, 2008
Uncharted Waters

A few years ago I traveled to Antarctica with my brothers. We went aboard an ice-class ship to visit one of the most extraordinary and wonderful parts of our globe. That part of the world is a long way away and is out of the normal lanes of traffic, and it’s very hard to get there. It’s probably about 8,000 air miles from Dallas and takes about fifteen hours of flight time to get to Ushuaia, at the tip of South America, before you can get on the ship that takes two days of sailing across what can be the very rough waters of the Drake Passage, just to get you to the continent’s outer islands. Until a few years ago only about 250,000 people had ever set foot on the continent. It is an incredible voyage that few people have been fortunate enough to experience.

But in my mind, it’s very much worth the long, tiring trip. I have described Antarctica as “otherworldly” as it has scenery and vistas found nowhere else. There are barren islands, with black volcanic beaches littered with huge whale bones. There is a still-active volcano with a caldera about nine miles across. One side of the caldera has collapsed and so it has filled with sea water. Your ship can sail right in most of the time. And there you can, if you want, bathe in some hot springs on the black beach. Meanwhile, just yards away the Antarctic Ocean which fills the caldera is a very cold 32 degrees. Back at sea, there are huge, miles long (!) icebergs that your ship sails by, and millions of smaller icebergs and “bergy bits” that bounce off the sides of the ship as it plows through the ice-filled waters. The icebergs are mostly bright white, but there are also deep cobalt blue icebergs and ones with all manner of dark stripes in shades of black, brown and blue.

On many islands there are colonies of tens of thousands of varying species of penguins, who allow you to walk among them without any alarm whatever; they think you’re one of them since all their predators are either in the water or in the air. To them, if you walk, you’re a penguin. There are also seals by the hundreds, whales here and there, and albatrosses, petrels, terns, skuas and gulls. In the waters off the penguin colonies leopard seals, which survive by eating penguins, patrol back and forth, waiting for their next meal. The penguins know the leopard seals are there, but the penguins must eat too, so they gather by the dozens along the water’s edge, needing to get to the krill and small fish. They are afraid to enter the water, but finally the crush of penguins along the shore pushes a few in and then, quickly, they all go in, knowing that the leopard seal can catch but one. Meanwhile, while the adults are away, the petrels and skuas try to steal penguin chicks and strip away their flesh while they’re still trying to escape. Nature at its rawest.

You can take off your parka, because it does get “warm” in the bright Antarctic sun when you’ve been hiking for a while in deep snow, and sit in a snowbank at any of hundreds of locations along the coastline and look for miles and miles around you and see nothing but islands of black volcanic rock jutting from the dark indigo-blue water, and mountains all around covered with snow and ice. The views are simply stunning. The sea is filled with ice in all sizes and in uncounted fantastical shapes. As you survey the incredible panorama you notice that you hear nothing but the wind, the gentle surf and the ice it carries, softly grating against the usually rocky shore, and depending on where you are, you hear the humming calls of the penguins. There is no sound except that of nature. No airplanes overhead. No cars in the distance. No air conditioner compressors droning. No garbage trucks, no music from someone’s boom box, no dogs barking. There are no contrails in the sky, no roads, no buildings. It’s just you and your shipmates at the end of the world.

While moving among the various landing spots, the ship’s crew navigates by intense observation of the seas and shores, by radar and, I think by sonar too. They need to know exactly what is in the area and they can’t plot a course simply by following the sea charts, because we’re, as mentioned, at the end of the world. There are, in fact, maps of the area, but since we are so far from civilization, there has been no need to accurately survey the oceans. I visited the bridge during one of our sailings from one spot to the next and looked at the captain’s sea charts. I found out why I always saw one or two crewmen on the bridge looking out to our direction of travel with binoculars. It was extremely important that they were looking out at all times. All along our course, the sea charts warned, “Uncharted… uncharted… uncharted.”

And so I’ve also entered uncharted waters, in a way. I have now completed five rounds of chemotherapy, of a new and untested regimen which has been given to but six other patients before me (I have to presume the other six are doing reasonably well and that no one has died from the therapy because they haven’t stopped the clinical study). I’ve never completed more than four rounds and four months of chemotherapy in years past and that seemed like more than enough at the time. Four rounds were enough in 2002 to make my doc stop the drugs for fear that we were going to destroy my remaining stem cells. But this time we’re going on for a total of six rounds. I’m finding that things have changed a bit with my extended exposure to the various toxic substances I’ve been getting. The recovery from my Rounds Four and Five went pretty well once I got over the incredible fatigue that hits a few days after we start. I had most of the usual symptoms of shedding hair, fatigue, achy joints, hoarse voice, etc. But a couple of new symptoms turned up as well, this time. First, I have been starting to have small mouth ulcers, something I’ve been warned I might get since my first chemotherapy back in 2002, but I never had any. Well, things are catching up with me now. I had a cluster of small mouth ulcers, very much like small canker sores, for those of you who are aware of what those are, but they remained small and generally not too much of a problem, being more of an irritant than a seriously painful problem as so many other folks have experienced. They healed over in about ten days or so.

And another strange symptom has cropped up as well. I have been having an altered sense of smell and taste. More often than not I sense the odor of what is rather like stale cigarette smoke when I’m nowhere near cigarettes and in places where no cigarette has ever been lit, like in our home. And some flavors have become strangely unpalatable, like cola drinks, which now taste bitter and unpleasant. And it’s the same whether the drink is a diet or regular drink, so it’s not the sweetener as I supposed at first. Because of this we bought some raspberry flavored water for me to drink during my last round of drugs and I couldn’t drink it, it tasted so awful to me. When I mentioned this to my doctor he remarked, “Oh, yeah, that’s very common.” Now, I don’t remember ever hearing about this possibility but if I did I long ago forgot completely about it. Fortunately, most foods still taste normal so I can freely indulge in BBQ and Italian foods, among other high calorie dishes. I still haven’t lost any weight.

And another thing I’ve experienced is a small case of shingles, the sometimes very painful eruption of blisters on the body, generally on the trunk. Shingles is (are?) caused by the activation of the virus varicella zoster, which is the same virus that gave me chicken pox many decades ago. Well, when the chicken pox went away, the virus didn’t. It’s been hanging out in my body, like it is in yours if you’ve had chicken pox, just waiting for a chance to come back. Generally it comes back in folks when they’re stressed, very tired, elderly or, in my case, immunocompromised (AND I’m semi-elderly, stressed and very tired too!). Fortunately my case was very mild and short-lived, probably because I’m taking the anti-viral drug Zovirax on a daily basis.

Other things have happened as well. Remember Rosanne Rosannadanna? She was the Gilda Radner character who was always finding that things didn’t go just right. “It’s always something” she’d say. That’s what it was like trying to get my fifth round of drugs going. It was always something! First, when I saw my doc to get prepared for that round, my white count was lower than he wanted, so he put me back on Neupogen again. Then, just a couple of days later I was called and told that my magnesium levels were low and that I needed to take supplements. I wasn’t crazy about that idea as most magnesium products are also laxative in nature, but then I decided I could see certain advantages in that action, especially during the infusions, given the well-known “brick-making” side effects of the anti-nausea medications.

The day we were to start Round Five, more complications arose. My platelets, which had been low but adequate at about 80,000 (normal is about 150,000 to 300,000) the week before, were found to have dropped when we did the blood test to see if my white count had risen. The white count had indeed risen, but now we had other issues to deal with. Now, the guidelines of the Texas Cancer Center—Denton don’t permit chemotherapy if the patient’s platelets are below 100,000. M. D. Anderson is a bit more cavalier with their guidelines and permits the infusions down to a level of 75,000 platelets. My level had dropped to 74,000, just shy of the lower limit. Many phone calls between Denton and Houston ensued. Since my numbers had been trending downwards for a couple weeks, they decided to postpone the infusions and I had to come back in two days to see what the trend was. Well, two days later the count was still 74,000! More phone calls. Finally the folks at M. D. Anderson decided that though my count was low, it wasn’t still dropping and they gave the go-ahead for Round Five. And so we spent three days getting the usual infusions.

The recovery from that round wasn’t as bad as I’ve had in past rounds. First, the headaches have been much, much less severe and don’t last nearly as long since we made the change from the anti-nausea drug Zofran to Kytril. Secondly, the body aches over the last couple of rounds haven’t been nearly so bad and the joint pains actually seem to be resolving. And the days of extreme fatigue, which have routinely been knocking me flat for several days after the infusions are much fewer now. I really only had one really bad day after the last cycle.

But, my marrow is screaming for mercy! I can’t actually hear it screaming but I know it is. I get blood counts done weekly, and Monday, just three days ago, my counts were about as low as they’ve ever been. Remember that my white count was about 100,000 when we started this regimen in February, and that a normal white count is about 3,000 to about 10,000 or so. Well, as of Monday my white count was only 700, with just 100 of the bacteria fighters, the neutrophils. This is incredibly low, and I continue to wonder why I haven’t gotten any serious infections, abscesses, colds, etc. A large part of the answer is that Kathy watches me like a hawk, and is always ready with hand cleaner for me, she keeps me out of stores, opens the doors, etc., to protect me from too much exposure to environmental bacteria. But, just like anyone else, I have bacteria all over the outside and inside my body, yet my few bacteria fighters have done an amazing job of keeping me well, despite their depleted numbers. At any rate, we’re “calling up the reserves,” and so I’m on Neupogen again for five days to give my white count a boost.

If things continue to go well, I’ll be getting my sixth and final round of this chemotherapy in about two weeks and then all I have to do is recover from it and the extended effects of all six rounds of the drugs. I really am getting tired of always feeling tired, and of having to sit for hours in the infusion chairs, knowing what’s coming after, which is that I’m going to be sick again. And I’m tired of being confined to our home for a couple of weeks at a time and having to schedule our lives around my drug regimens. But, I am so fortunate to be able to participate in this remarkable drug study and find that it seems to be working so well. We really won’t know precisely how well it’s working, however, for many months, or even (hopefully) several years after we finish, because the measure of success will be to see if I can again get into remission and if I do, how long will the remission be. Will FCR/Avastin be better, the same or worse than the standard FCR regimen? Or just more expensive. That’s what we’ll be trying to find out.

I’ve told you about the bevacizumab, or Avastin, that I’m getting as part of my drug regimen at $30,000 a dose. And I’ve told you that it’s made by Genentech, the same folks that make the Rituxan I get at about $2000 or so per dose. Well, if you haven’t done so, you might take this opportunity to buy some stock in Genentech, because just in the few months I’ve been taking the Avastin, I’ve seen more and more indications for its use. First it was added for breast cancer, then cervical cancer, then other lung cancers and apparently almost any solid cancer, like bowel and pancreatic, etc. Now I have read that Senator Kennedy may be getting Avastin for his brain tumor. It’s even being used to treat non-malignant conditions like macular degeneration. Now, the thing about Avastin is that it doesn’t really cure anything, as far as I know. What it does is prevent the growth of the blood vessels that let tumors grow and spread. It contains the cancer, but doesn’t kill it. It turns a deadly disease into a chronic illness. So a patient is unlikely to get a six month course of Avastin and then go on their way, cured. More likely it will require repeated treatments for the rest of the patient’s life. And if that’s so, Genentech is going to sell a lot of their very expensive drug. And if the study I’m in, with Avastin being used for chronic lymphocytic leukemia, pans out as an improvement, there will be yet another huge market for the drug! Hey, the stock market is down these days. It’s an opportunity to get some stock cheap, probably (I say, without having looked it up to have any idea what it costs per share).

I received a most wonderful, kind and completely unexpected e-mail a couple of days ago from, as I told her, a “perfect stranger.” (She wrote back that she wasn’t perfect but had some folks fooled). This woman was a grade school friend of my younger sister some forty years ago and was trying to catch up with her using search engines when she stumbled into my blog. Part of what she wrote was: “Although you and I do not know each other personally, I felt compelled to email you…. Your blog is engrossing, touching, and, when one is just about overwhelmed at reading what you have endured, includes welcome levity. I admire your strength, attitude, sense of humor, and the fact that you allow yourself to feel & express your thoughts, fears, and emotions. I once read that we are all here to learn &/or teach in an attempt to perfect ourselves. (Kubler-Ross or Wayne Dyer I think) If that premise is true, you have had to learn way too much already. However, you are teaching many through your excellent example of how to deal with extreme adversity. And surely others will be helped by all that has been learned through your experience with CLL and Rx. It is my sincerest hope that your CLL will promptly slither back into remission and that your future will be filled with much more pleasant experiences.” I am very gratified to hear this from her and know that my experiences can be instructive and of interest to others, which is one reason I put it into the blogosphere (with much encouragement from our daughter). As I told her, also, I tend to be more open and honest in my writing many times than in person, where I will generally deny feeling crappy, tired, sick or whatever. The things I’m learning are the same things so many others before me have had to learn as well. If I can help other folks with CLL understand what they’re going to go through and what they can do in their own behalf I will be very satisfied with the blog. And I like her description of the CLL “slithering” back into remission.

Kathy and I are looking forward to being done with these treatments and being free to do the things we enjoy most, like travel. I already have a number of things in mind that I’d like to do, mostly in terms of trips to various places, but Kathy keeps warning about trying to do too much too soon. I will still be immunocompromised for many months and weak and with a reduced stamina for quite a while as well. I do need to pace myself, but it’ll be nice to be able to plan for the days when I can break out of my treatment confinement.

Speaking of planning, we’re going back to Antarctica again next February!

That’s all for now. But, of course, there’s always more, sooner or later.

Dave
dreck@prodigy.net

“Do a little more each day than you think you possibly can.”—Lowell Thomas

A Stark View

2008-06-02T18:35:00.000-05:00

Dave’s Great Adventure, Book Three
Chapter 4, Verse 1
June 2, 2008

The infusion chairs you sit in, recliners really, are institutional and very functional and they’ll never be mistaken for your basic La-Z-Boy. They are clad in hospital-standard, light-green vinyl, the vinyl making it easier to clean up spills and stray body fluids. Each chair has a “wing” or small table at each arm, on which the nurses place supplies while starting IVs and initiating chemotherapy infusions. You can also place a drink on the “wing,” or perhaps your lunch if you’re there for a long infusion.

The reclining chairs have three positions; sitting, feet up and full recline. Most of the time you sit in full recline because the medications you’re given make you feel drowsy or sick, or perhaps both. At full recline your view of the world is stark. There is an off-white, rather light gray wall to your left. Overhead are standard gray-mottled acoustic ceiling tiles, about eighteen inches square. Some are stained with old water leaks, probably from the sprinkler system they hide. And there are fluorescent light fixtures, also about eighteen inches square, mixed in with the acoustic tiles and the occasional HVAC vent. The textured plastic covering the light fixtures contains a scattering of dead insects which have gone on to Bug Valhalla while searching for the source of the light.

And on your right there is a gleaming stainless steel pole, entering your field of vision from below and ending above you. The pole has a cross member at the top, with a hook at each end. From the hooks dangle several smallish clear plastic bags with labels on the far side which you’re unable to read. The bags have tubes which drop down and join other tubes which join yet other tubes leading out of your field of vision. You can’t see where they go, but the chill in your hand which you feel all the way up to your shoulder leads you to believe that whatever is in the bags is going into your arm. The fluids look benign.

The infusion room at the Texas Cancer Center-Denton is an elongated, squared off “C” shape. It’s about ten feet across the top, perhaps fifty feet along the west side and eighteen or so feet across the bottom. The open ends of the “C” are further squared off with walls about ten feet in length. The room is on the northwest corner of a generally northwesterly oriented rectangular building just off Interstate 35E. The wood paneled nurses’ station partially fills the jaws of the “C.” Distributed around the walls of the room are eleven identical hospital-green infusion chairs, all facing inwards toward the nursing station. I think that’s an unfortunate orientation because there are five windows along the long, westerly facing wall and another on the short northern wall. I’d rather be looking out the window at the crape myrtles, the sky and the birds than away from the outside view. In Denver all the chairs in the chemotherapy room faced away from the nursing station, towards the windows on the tenth floor of the building, giving great views of the Denver skyline. But here they do have eight televisions mounted to the ceiling for entertainment. Fortunately they are all muted, so that you don’t have to listen to the cacophony of eight televisions, each trying to out-volume the rest. There are headphones behind each chair which allow you to hear what is on the screen above you if you have any interest at all in the daytime television offerings.

I like to sit in the chair in the upper right corner of the “C,” and since we’re always early, we generally have our choice of chairs. It’s a bit out of the flow of traffic and gives the feeling of being a little quieter, but it’s hard to know if it really is. It seems like most of the folks who come here also have their favorite place, as we see the same folks in the same chairs at each visit, month after month. The folks who join you in the room come in all shapes and designs. Many are older, as you’d expect in a cancer clinic, but there are too many younger people as well. There was the guy in his early thirties, a quietly resolute look on his face, getting an infusion while his wife was looking through dozens of photocopied pages of material, trying to find the latest in treatments for his disease, I imagined. And another young guy, also early thirties, who always sits in the lower left corner of the room. He has a bald head, always covered with a ball cap. I asked him once, when the room was almost empty, what he had. “Cancer that has spread to my lungs,” he said vaguely. “What are you getting?” I followed up with. “Chemotherapy,” he responded. He apparently had no idea where the cancer had come from, and really didn’t care to know what he was getting, which I found to be simply amazing, since I want to know, with every infusion, what’s going in and how much of it. I’m probably a big pain in the ass to the nurses.

The room starts out empty, but generally by mid-morning every chair is occupied and often they’re using an overflow, single-bed room around the corner from “my” place. But by mid-afternoon, it’s almost empty again. We see the entire flow and ebb of the crowd while I’m there on my Day One, when the infusions take eight to nine hours. During this time I’m generally reclined most of the time, often dozing. Meanwhile Kathy is sitting in a thinly padded straight chair next to me, reading. I don’t know how her butt takes all those hours of just sitting. That’s more time than it takes to fly to Germany! But she’s been there with me, and for me, for every round of drugs I’ve ever done. Meanwhile lots of folks come in all by themselves. I feel badly for them. It seems like when you’re fighting a malignancy and getting drugs that are going to make you feel sick, someone should be there for you.

Some people dress up, like the lady in the striped dress and the pearls. Others, most people, just wear everyday stuff like jeans and T-shirts. But there are folks who look like they just came in from the fields, perhaps farming or something, and probably that’s exactly what they were doing. Some folks look homeless but have attendants with them. And there’s a doctor who comes in wearing his scrubs. I don’t know what he has.

Probably eighty percent of the patients around the room have infusion “ports” buried under the skin of their right upper chest, below their collar bone. It makes it easier for the nurses if the folks have ports because they don’t have to start IVs on them. Most folks pull down their collar or unbutton the top of their shirts to allow access to their ports, but there’s the great big guy who sits at the bottom of the “C” who wears T-shirts that don’t have enough slack in the collar to be drawn down to the level of the port, so he sits for hours with his shirt pulled all the way up to his neck, exposing his massive and not particularly attractive belly to the entire room. And he doesn’t really care.

I watch the goings-on in the room, but I don’t hear anything. I see the nurses approach the other patients and their mouths move, but there is no sound. The earbuds from the MP3 player are in place and it’s as if I’m watching a movie with a musical sound track of classic rock. As I look around the room, it seems surreal. I shouldn’t be here. Sick folks come here, not me. It’s just a movie; maybe a dream. They give me the pre-meds and I start to feel woozy and go into full recline. The stark view of the world returns. There are the multiple clear plastic bags, still hanging there on the cross-member of the gleaming steel pole. They look like they’re filled with water, but I know they’re not because the nurses wear gloves just to handle them, so toxic are they. They smile at me pleasantly and adjust the bags and the tubes. And they put the stuff into my veins! You know, I thought I had a pact with God. I’d go into the profession of curing disease and saving lives and He’d protect me from all this death and disease stuff, right? I shouldn’t be here. This place is for sick folks. And my arm gets cold from the clear fluids running into it. I pull up my green TNT blanket and close my eyes.

And so I went through Round Four of my chemotherapy, the fourth of six planned rounds of infusions, after the folks at M. D. Anderson looked me over and said my lab reports were right where they wanted them. This round went quite a bit better, at least initially, than the last one. In April I was sick and had a horrible headache by the start of the last day of the drugs, day three. It was the kind of headache that makes you hold you head absolutely still and makes you feel like you’re going to vomit. I had mentioned this to Alice, the Protocol Nurse Practitioner who evaluated me in Houston. “Zofran,” she responded, referring to the anti-nausea drug I’d been getting. “Huh?” I said. “Yeah, Zofran can cause that. Let’s try you on Kytril or Aloxi instead,” she said, rattling off the names of anti-nausea medications I’d never heard of and that probably hadn’t even been developed when I had to retire a few years ago. It turns out that I had been getting high doses and high concentrations of the Zofran. I didn’t know. I always ask about the doses of the chemo drugs they give me, but had never asked about the amount of Zofran, figuring I was getting the same doses I gave my patients years ago. So it turns out that some of my worst side effects were side effects of the drug I had been getting to minimize other side effects. Does it get any more ironic than that?

I got through the three days of drugs, the days again being long to start out with, at eight or so hours, but getting progressively shorter and I completed the infusions without the standard headache. That didn’t come for a couple more days, but wasn’t as bad as previously and didn’t last as many days. I thought I was doing pretty well, not feeling too awfully sick or anything, and got through the three days of infusions and into Thursday just fine, but then Friday sneaked in and hit me in the back of the head with an aluminum softball bat, you know, the ones that go “Ping!” when you hit something, and I didn’t really come to until Sunday Afternoon dropped by for a visit. I don’t recall ever being so tired after a round of drugs. I was laid low, lying around the house sleeping, sleeping on the lawn chairs on the patio, sleeping in front of the TV. I could rouse long enough to eat a bit, but that’s about all I could get myself to do. I was completely wiped out.

It’s now been a couple of weeks since the drugs went in and I’ve slowly come back to a more functional level but it’s been a slower recovery than before, I think. I just suspect that the cumulative effect of the drugs is taking a toll on my elderly body and that it will continue to get a little worse with each course. But I only have two more to go! I really am tired of feeling this way, though.

The other side effects are about the same. I have the body aches which get bad after each infusion and which slowly, very slowly, get a little better until I get the next dose of Avastin. Larry, our friend who is also getting Avastin still has aches and pains with his chemotherapy, too. I find that large doses of ibuprofen help a lot, but the problem with that is that I start getting bad stomach pains if I take too much, because the Avastin also causes a stomach irritation and pains. Larry ended up in the emergency room at M. D. Anderson during his first rounds of therapy because of severe abdominal pains which turned out to be essentially a very bad case of heartburn. He’s now on Nexium, I’m on Prilosec, both being acid-reducers. Also, we both get a bit hoarse and “squeaky” after each round. The, uh, “concreting” effects of the Kytril are just as bad as those of the Zofran, so that’s still an issue. And I’m still slowly shedding, probably because of the Cytoxan, but still nowhere near bald like I was a few years ago.

My blood counts have been amazing. Logically, you would expect them to be getting lower and lower with each round of drugs, like they did after my first series of infusions back in 2002. But the lowest my white cell counts have ever been during the current treatments was in the third week after my very first round of chemotherapy. They remain low, between about 1,200 and 1,700 or so, but stable. This week, my “nadir” week, my counts are actually slightly up from the numbers last week. I can’t explain it, but I guess it’s okay. My clotting cells, the platelets, are holding steady at a low but sufficient 60,000 to 80,000 and my red cells are low normal at 34%. And I finally heard about the results of my bone marrow biopsy, too. It showed less than 1% leukemic cells in the marrow, so again it seems like we’re doing something right. Hopefully after six rounds of drugs they won’t be able to find any of the bad guys in there, at least for a while.

Our friends Lou and Joan, from Golden, Colorado, continue to send almost daily greeting cards and e-cards, and have made me laugh even on some very bad days. Thanks again, guys. They have signed up to do a marathon with the TNT in October and have dedicated their efforts in my behalf and that of many folks like me. I think I’ll attach links to their donation web pages if any of you would like to help them out. Please take a look and see what you can do. They’ll thank you and so will I.

And I think that’s enough for now. I’ll try to get another update out within a week or so.

Bye now,

Dave
dreck@prodigy.net

“The worst thing that happens to you can be the best thing for you, if you don’t let the worst thing get the best of you.” --Unknown

Lou’s donation page: http://pages.teamintraining.org/rm/denver08/lhenefeld

Joan’s donation page: http://pages.teamintraining.org/rm/denver08/jhenefeld

Very Lucky

2008-05-18T22:49:00.004-05:00

Dave’s Great Adventure, Book Three
Chapter 3, Verse 2
May 18, 2008
Very Lucky

I met a gentleman in Houston last week, by a chance encounter, and it made me wonder why things turn out the way they do. He and I are about the same age, I’d guess, and we’ve seen a lot in our six decades of life, but things have turned out very differently for us. What is it that determines the paths our lives take?

He and I were both born some sixty years ago, or so, and were held by mothers who cried tears of joy and kissed us and loved us. Hopefully he had family around to celebrate his birth, as I did. But sixty years later, in the south side of Houston, he appeared totally unloved and abandoned.

I first noticed him as Kathy and I sat in a Taco Cabana restaurant across the street from our hotel. We were just having a light meal when he came in. I didn’t pay a lot of attention, but I noticed that a wheelchair-bound man was moving around near the service areas and at some of the tables. I thought at first perhaps he was a handicapped employee, as he seemed to be checking out each of the areas. It was only when I saw him reach into the paper napkin dispenser, remove a three-inch stack and stuff it into the space between his legs and the side of the borrowed wheelchair (supplies for later?) that I realized he was probably homeless. He moved about from empty tables to the condiments area to the rack with the plastic utensils and elsewhere. Shortly thereafter he came over to the section where we were. As he passed us I saw that he had taken someone’s used paper cup and filled it with pico de gallo from the condiments bar and was eating it for dinner with a plastic spoon.

He headed towards the door. On the back of the wheelchair it said “Peds, Guest Services.” It must have come from one of the local children's hospitals, but we were at least a mile from the closest of the facilities with many busy streets between them and the Taco Cabana. I looked at Kathy and said, “Oh my gosh, did you see that? The poor guy’s eating a cup of pico!”

We were born at about the same time, but sixty years later I am extremely fortunate to be able to say that I have more than I need of just about everything. I have a loving wife and supportive family all around me, a circle of amazingly wonderful friends, and more material goods than I need or deserve. The only thing I could possibly ask for would be for my disease to be taken from me, but we’re working on that. Yet the gentleman had none of these things, as he sat in the Taco Cabana, crippled, destitute and homeless. Why the difference? Is it simply an accident of birth place or circumstances? Different work ethics or work opportunities? Or just bad luck on his part and good luck on my part? I can’t know how he came to be sitting in that borrowed wheelchair eating pilfered pico de gallo on that Tuesday evening in May.

He saw me as I approached him and asked me, “Would you open the door?” But I asked him, “Would you like something to eat?” He was initially embarrassed, as he seemed to think I worked there and had caught him stealing food and was asking for him to order something. He looked up with weary eyes and said, “No, I don’t have no money.” “No,” I said, “are you hungry, I’ll buy you something to eat.” He allowed that he’d like a couple of tacos. So I went to order some food for him, and when the cashier asked, “For here or to go?” I told her it was for the homeless gentleman by the door. She looked over, was sympathetic, and added more food to my order at no extra cost. I took him his drink and food and he went to a table and ate. I returned to Kathy and wondered why I was so lucky and he was so unfortunate.

The trip to Houston this week went well. We arrived there safely, but tired. We didn’t get to the NASA museum as it would have been a full day visit and I wasn’t feeling up to it, but the nearby Museum of FineArts Houston (that’s the way it’s written) was having a special exhibit of several hundred recently excavated artifacts from Pompeii and Herculaneum. Many of you know that I love Roman history and have been to Pompeii a couple of times, but I’m always interested in seeing more, so we decided to visit the museum, selecting that over the held-over “Lucy,” early-man, exhibit at the Museum of Natural History just up the street. We’ll probably see that exhibit next time if it’s still in town. The Pompeii exhibit was just excellent and I recommend it to any of you who might happen to be passing through Houston anytime soon.

The visit with my docs and nurses went extremely well. They are all very pleased with my progress. Dr. Keating said, “You’re making me look good.” All my labs are normal, including my white count, which was up to 3,300. That’s in the low end of the normal range of white cells, which amazes me, because in 2002 when I was first doing the FCR protocol my white counts just got progressively lower and lower until we stopped when they got down to 1,100. The even better news is that of the 3,300 white cells, most of them are “good” cells, the neutrophils and monocytes, with still only a small number of potentially malignant lymphocytes. Dr. Keating cleared me to start the second half of the protocol, which we’ll begin tomorrow morning.

Oh, yeah, after I had the visit with all my docs and nurses, I had to have the bone marrow biopsy. Once again, it was done extremely well and really didn’t hurt very much at all. The worst part of the procedure, for me, was tensing up and waiting for the sharp jolt of pain which I had experienced in the past, but the jolt never came. And I knew, though I couldn’t see it, that there was a huge needle being prodded deep into my hip bone, and that visual is worrisome because you expect it to hurt, but overall, it didn’t hurt any more than falling down on pavement and skinning your knee. And these procedures are done not by doctors, and not by nurses, but by technicians who are trained in the art of bone marrow biopsy. They are trained exceedingly well. We won’t have the results of the bone marrow biopsy until later this week but with all my labs doing well, I fully expect that the biopsy results will also be relatively normal.

Many of you know that I bought a little sports car last year, after not having one for about fifteen years. I had a sports sedan when we moved to Colorado, but with the snow and gravel on the roads much of the year, I didn’t drive it a lot and finally I traded it in for a 4-Runner, which is much more utilitarian in the wilds of Colorado. So I’ve been without a “fun” car for about fifteen years but didn’t really miss it until recently, because when I was recovering from the chemo-brain, I couldn’t concentrate on traffic enough to drive like one would in a sports car. But late last year I was feeling better and so I bought one. I loved that little car, but it had a standard transmission, as God intended sports cars to have. Problem was, Kathy couldn’t drive it. I found, on our little overnight trip to Nacogdoches last month, that I needed help in driving that I couldn’t get if the car had a standard transmission. If we were to travel much in the sports car, Kathy would have to be able to drive it too. So, this month I traded my little sports car for one with an automatic. At least that was my excuse. The fact that the new one has more creature comforts, a sun roof, all-wheel drive, small back seats (for jackets and maps, and such) plus an extra hundred horsepower also may have figured into my decision. It does go! Fast! Kathy drove it for a while on the way to Houston and I saw the speedometer in the 80s much of the time and into the 90s a couple of times! She hasn’t driven that fast since we got back from Germany years ago.

I’m reading Ayn Rand’s "Atlas Shrugged" these days. That’s amazing on several levels. One, I don’t normally read fiction. Secondly, I don’t know how I got through high school and college with out having been assigned to read it. And mostly, it’s rather amazing that I’m able to comprehend this very long, dense "War and Peace"-length book these days. I borrowed it from our friend Bonnie a couple of months ago and have slowly been working my way through it. Has anyone else out there read this book? I still see it for sale in the local book stores, sixty years or more after it was written. Very interesting premise. I’m just getting to what it’s all about and see a lot of parallels between what Ayn Rand was describing and modern work culture in America.

I think that’s plenty for now. I’m going to close this update and get to bed. I start Round Four in the morning and the first day is always a very long day, usually about eight hours. More later.

Dave
dreck@prodigy.net

"Everything I have in life is more than that which I don't have.” --Unknown
(sent to me by our friend Tom Redd in Colorado)

Halfway Done

2008-05-11T21:34:00.000-05:00

Dave’s Great Adventure, Book Three
Chapter 3, Verse 1
May 11, 2008
Halfway Done.

I’ve been extremely delinquent in getting my updates out. I’ve promised numerous folks over the last couple of weeks that I was going to get a letter out but I just haven’t gotten it done. Laura, of TNT, told me that I didn’t have to write a novel each time I sent out an update, that a short memo would do. Anna, who is traveling back and forth to Houston with husband Larry, for his experimental Avastin treatments, is able to send out complete updates in about six sentences. I should be so economical with my words! But in fact I seem to think that I have to write The Great American Novel with each letter because I have so many thoughts running around in my head. However, I haven’t been able to make myself sit down and organize them of late. I guess the drugs are catching up with me. I’m starting to feel more fatigued on a regular basis, am having more trouble keeping my thoughts together, and am beginning to require a period of rest just about every afternoon, like I did for months before I retired and then for a year or more afterwards. I finally came out of my mental fog of “chemo-brain” in the last year or so, but I think it’s coming back.

I really didn’t expect this because I haven’t had the “fuzzies” this time around, a condition long-time readers will remember me describing after each prior round of drugs. During the mental “fuzzies” I couldn’t read the paper with comprehension, remember much of anything and mostly I would just lie around the house for several days until the symptoms slowly went away. I expected to get the fuzzies again, since I’m getting basically the same FCR (Fludara, Cytoxan, Rituxan) regimen I got several years ago, and then, on top of that cocktail, I’m getting the Avastin too. But since I didn’t get the fuzzies I expected that I’d avoid the chemo-brain this time around too. I think I was fooling myself. I have to wonder if the lack of large doses of steroids with each day’s infusions has something to do with the absence of the fuzzies with this new regimen.

Anyway, my lack of communication didn’t mean that there were any serious problems; just that I was tired and/or lazy, and a bit busier than I should have been at times. I haven’t really been ill, haven’t gotten a cold or bronchitis or anything, and even my sinus infection has cleared up. I’ll try to do better with updates in the coming weeks.

The last rounds of drugs went pretty well. The first day was very long again, lasting eight hours because of the four hours it takes just to give the Rituxan, which is then followed by the Fludara and Cytoxan. The next two days went much faster though. But I was getting sick by the end of the second day and felt really pretty bad before we even started the third day’s infusions. I was extremely tired and had a splitting headache and queasy stomach, feeling much like I had a bad migraine. I treated the headache like I have in the past with reasonably good results. The headaches usually decline in severity over about five to seven days after the infusions and the fatigue subsides along with the headaches. I still have all the joint aches and am still slowly shedding my hair, but the fatigue is just a bit worse than before.

My blood counts through the last cycle haven’t been too bad. My nadir, or low point, white blood cell counts weren’t as low as they have been in the past, and my platelets and red cell counts have been holding steady. I haven’t required any Neupogen this cycle, which really surprises me, because I would have expected that my counts would continue to decline with each round of chemotherapy. But in fact my white counts last Monday were the highest they’ve been since the first week of the first round of this new regimen, back in February. Not all that high, really, at 2,500, but my counts haven’t been above 2,000 without the help of Neupogen since we started. And even though my counts are up a bit, the lymphocyte counts remain low, at 200. So the stuff is working, but for reasons I can’t explain, it’s sparing my neutrophils and monocytes, the white cells that take care of bacterial infections.

Since it’s been a lot warmer and the flu season is over, we’ve been getting out a bit more. I haven’t been quite so paranoid about being out among crowds or in restaurants. We’ve made it to church (sitting across the sanctuary from where the families with the small kids usually sit) and have been able to eat out and see the family on a fairly regular basis. We even went to a Roger Waters concert (he being a former member of the band Pink Floyd; I’m sure my mom will now immediately recognize who he is!) in Dallas. The music was great but it was ear-splittingly loud where we were sitting. I was wishing I had brought the ear plugs I had intended to bring but forgot (because of my chemo-brain?). One benefit of the concert for those of us involved with chemotherapy was that there was a lot of medicinal mary jane in the air around us. Wow, I haven’t had any nausea since the concert! But I’m always hungry….

The next couple of weeks will be busy for us. We leave on Tuesday to go to back to Houston again, this time for my “mid-protocol” examination and evaluation, with labs and a bone marrow biopsy. If things are going as expected and they don’t think my side effects are too worrisome, we’ll return to Denton next Thursday afternoon and start Round Four the following Monday. I had the option of doing the chemotherapy in Houston, but decided I didn’t want to have to travel the three hundred miles back to Denton feeling as badly as I did after my last course of drugs. Now that I have more confidence in the local nurses I’d just as soon get the drugs here in Denton and be able to go straight home to rest and recover. We’re going to Houston a day earlier than we have to because we’re going to try to see the nearby NASA museum while we’re there. Whether we actually do or not will depend on how tired I am after we get there. My experience with our little overnight trip last month makes me suspect that I’m going to be more tired than I would like. We’ll see.

And that’s about all for this time. I’ll try to get another short update out after we return from Houston at the end of the week but it may depend on how tired I am and what all we have to do to get ready for the start of the fourth (of the six planned) round of drugs. Wish us luck on our trip to Houston this week.

Dave
dreck@prodigy.net

A BABY ASKED:
A baby asked God, “They tell me you are sending me to earth tomorrow, but how am I going to live there, being so small and helpless?
“Your angel will be waiting for you and will take care of you.”
The child further inquired, “But tell me, here in Heaven I don’t have to do anything but sing and smile to be happy.”
God said, “Your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.”
Again the child asked, “And how am I going to understand when people talk to me and I don’t understand the language?”
God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”
“And what am I going to do when I want to talk to you?”
God said, “Your angel will place your hands together and teach you how to pray.”
“Who will protect me?”
God said, “Your angel will defend you even if it means risking its life.”
“But I will be sad because I will not see you anymore.”
God said, “Your angel will always talk to you about Me and will teach you the way back to Me, even though I will always be next to you.”
At this moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, “God, if I am to leave now, please tell me my angel’s name.”
“You can simply call her, ‘Mom’.”

Spring Break!

2008-04-13T22:07:00.000-05:00

Dave’s Great Adventure, Book Three
Chapter 2, Verse 4
April 13, 2008
Spring Break!

So, last Monday Kathy and I showed up at the clinic right on time, at 9AM, which of course means that we were actually late, because we almost always get where we need to be early. It’s been that way ever since we got married. We once got to the airport three and a half hours early for a flight!

Anyway, we checked in, got our paperwork and headed back to the “Infusion Room.” I went to a chair in the inner far corner which is a little more out of the way and perhaps a little quieter than the rest, and we set up shop. Whenever we go in for the infusions, we are prepared. The infusions take hours, so we have books and magazines, my MP3 player, my “Mascot Dave” blankie and my TNT (soon to be revised) cap to pull down over my eyes when I get tired. We were getting our stuff organized when a nurse we hadn’t met before came by and told us she was just waiting for the orders so she could get the drugs started. I asked about when the blood count was going to be done, as I knew my doc had ordered one to be done before the start of more drugs. She said I didn’t have one ordered. “Au contraire,” I said (in English, of course, because I really can’t speak French). So she checked with the other nurses and they agreed that I didn’t have one ordered. I asked if they’d check again and, indeed, they found that there was a CBC ordered to be done before the start of the infusions. So then I thought, not unreasonably, that she’d draw the blood. But she said that, no, it would be “quicker” somehow if I’d leave the infusion room and go wait in line at the lab. “Quicker” indeed! So I left, waited at the end of the line in the lab area (surrounded by sick folks, whom I try to avoid when possible) and after about thirty minutes got the blood drawn.

I returned to Kathy and my chair and waited for the results before the start of the infusions. And waited. And waited. After about forty-five minutes the nurse came back with the numbers and told us that there was a problem, that my platelets, which had been at 90,000 on the previous Thursday, only four days prior, were now at only 64,000. And that was a problem according to the folks in Houston, whom they’d contacted, because I couldn’t get the drugs unless my platelets were more than 75,000. So they sent us home to await further instructions.

We got home and sat there, wondering what to do. We had planned the whole week around the infusions and my recovery from them. Suddenly we had no plans, because as we left the clinic we were told we wouldn’t try again for at least a week. What to do? We could have decided to catch up on house cleaning or pulling weeds in the yard. Yuck! Instead, just like those loveable drunks in “Animal House,” we decided to go on a “road trip.” It was a nice idea, but not a good idea.

Kathy and I had been thinking for a month or more that it might be nice to visit Nacogdoches, Texas, where there is an arboretum on the campus of Stephen F. Austin State University. They have an azalea festival about this time of year, and when we found that we had a “week off,” we decided to take a short overnight trip out to east Texas. Nacogdoches is also the oldest town in Texas, they say, and has some historical sights, including a college building dating back to the days of the Republic of Texas, when Texas was its own country and not part of the U.S. Back then Texas was much larger than it is now and included what later became the panhandle of Oklahoma, most of eastern New Mexico, the southwest corner of Kansas, most of the Rocky Mountains in Colorado and a piece of the Rockies in southern Wyoming. Anyway, a trip to see the town and the flowers, especially after we’d been cooped up for so long, sounded like a great idea. I was feeling pretty good too, and wanted to get out.

Problem was, it turned out, I felt pretty good as long as I wasn’t doing very much. And just driving to Nacogdoches turned out to be “doing very much.” It was only about a 225 mile drive, and a nice drive too, but I was pretty tired when we got to town and needed to rest in our hotel room for a while before we could get out to see the arboretum. But later that afternoon we visited the gardens and enjoyed the exhibits, but found we had missed the blooming of most of the azaleas by a couple of weeks. After a couple of hours there I was really tired and we went back to our room. We never got out for the walking tour of the city which I really wanted to do.

The next day, on the way home, we took a little detour to Crockett, Texas, where my sister Diane lives. We had a beautiful drive through the Davy Crockett National Forest to get to Crockett, and then spent a few hours with Diane and her family, having lunch with her and her son Zak while we were in town. We then drove home. But by the time we got home I was just exhausted from the drive. And I was aching all over again, especially in my arms, back, neck and shoulders. The pain has persisted since the drive, too, and anything I do seems to make my joints hurt. And I thought I was getting better.

I’d been feeling quite a bit better over the last couple of weeks, not well, but better. Many of my joints still ached but not quite as badly. I heard from Anna again (of mud-wrestling fame) who was reporting on her husband, Larry, who is also getting Avastin. He’s getting his infusions at M. D. Anderson in Houston, and so they go there every two weeks, whereas I only get the stuff every four weeks or so. Well, after two treatments with the Avastin Larry reports that his joints are feeling achy as well. He says it feels arthritic, which is exactly what I was thinking, so I’m guessing that all these pains are caused by the Avastin after all. I had a few after my first round and many more after the second dose, just like Larry. Interestingly, the long list of side effects doesn’t mention joint and body aches very prominently. I suppose that when the “side effects” include bleeding to death, fatal bowel perforations, heart attacks, strokes, brain damage, kidney failure and the like, that achy joints don’t seem very important.

I have found that it’s primarily my small joints that are bothered by the drugs; my wrists, hands, ribs, spine and so forth. And it’s amazing how many small joints one has. You don’t think about all the joints in your wrist until they all hurt when you wash your hands, pull your socks on or push yourself up to get out of the bathtub. Or how many joints you have in your ribcage (everywhere a rib joins the sternum in the front and the spinal column, in back) until you lie down. Curiously, I think, the joints that have caused me the most problems over the years, my knees, are seemingly not bothered at all by the drugs, at least not so far.

The fact that I’m still aching and tired from the last round of drugs really makes me not look forward to doing it again, but of course I have to. In the past, I pretty much always felt completely recovered from one round of drugs before we started in with the next round. But now we’re about ready to go again and I still feel bad. It makes me wonder how much worse I’ll feel in the coming weeks. I’ve mentioned before that early in my confrontations with this disease I was actually anxious to get going, to do as much as we could to try to eradicate the disease. I wanted to do chemotherapy often and in large amounts. But now that I have finally come to the realization that the leukemia is not going away (permanently, anyway), I see the trials of the chemotherapy as another hoop I have to jump through before I get to the next hoop I have to jump through. I get tired of being tired, and now I’m tired of feeling sore all the time too. But, what are you going to do? Doing nothing is a death sentence and so you do what you have to do. Being tired and achy is my “new normal.”

After we got home from our little journey, we rested up for a couple of days. My repeat blood count which was done on Thursday was okay, with a decent neutrophil count and platelets up to 80,000. I figured it would be safe to go to the symphony, and really wanted to hear a concert since we hadn’t been to one in months. So we went on Friday night and things went very well. It doesn’t take much effort to sit in a concert hall listening to classical music. It’s quite relaxing, in fact. There was very little coughing going on in the auditorium and none at all near us. The concert was a very pleasant presentation of Beethoven’s Fifth Symphony as well as his Fifth Piano Concerto.

So I figured we could probably go to church, too, though church is, for folks like me with health issues, a little scarier. There are a lot more kids in church than in a concert hall, carrying lots more colds. And there is the custom in the Methodist church of greeting and shaking hands with everyone around you, something I try to avoid doing these days. But, we thought we could go and sit in the generally sparsely occupied balcony and be by ourselves. That didn’t work. When we arrived at the church this morning and took up residence in the balcony we were almost completely alone. But then a couple of families with small children came up to the balcony as well, taking seats right behind us. One of the kids had a nice, juicy cough. Kathy and I looked at each other and just with eye contact knew we had to move. So we got up and moved to the other side of the church and into relative isolation. I’m afraid we probably hurt the families’ feelings by leaving when they got there but I suppose it was the prudent thing for us to do.

I still haven’t heard anything officially from the Leukemia and Lymphoma Society corporate offices yet, but I’m guessing they really like the idea about changing TNT’s name. It’s probably just that they have to look at the overall costs of changing all the logos and such. Meanwhile we’re charging ahead with the process, though I noticed that Coach Neal erroneously sent out a memo to the team from the “TnT” coach. His wife, Becky, is doing better. In Dallas recently there was a marathon in which many of our team participated. The team got together to make up posters and Becky proudly proposed making one that proclaimed, “Go Big D TITs.” Can you believe they wouldn’t let her do it! I told her that there were always going to be folks who opposed creativity and innovation. Meanwhile, Kim (whom I’ve mentioned as recently having had a third anniversary of being free of lymphoma) was out doing fundraising for the team and was picking up fund raising items from both Bone Daddy’s and Hooter’s! That goes right along with the new theme, doesn’t it. She was doing it for Jane, our fund-raiser extraordinaire, who had arranged for the donations. And speaking of Jane, she has her own little fund raising scheme that she calls “Jane’s Jugs,” where she sets up raffles by selling tickets and collecting dollar bills in milk jugs, dollars that eventually go to the accounts of the runners on our team. You see where this team’s mind is? Coach Neal is a bit shyer than Jane, though, and can’t make himself mention it by name in his updates. He just refers to it as “Jane’s Politically Incorrect Fund Raising Plan.”

I recently mentioned the voice that kept making me, or at least allowing me, to eat everything in sight. Well, I’m apparently not the only person in the family who hears the voices. My brother Doug, who is a Ph.D. professor of sociology at Winthrop University, wrote with this confession. “I've heard those little voices for years. Mine say "You're a poor, overworked prof whose students don't give a rat's ass and whose colleagues are a bunch of whining, pinko low-lifes. Eat whatever you want! Afterwards, go kill a few of them and bury their bodies in the Dean's yard." My doc says with the proper medication I'll stop hearing those voices--but the voices are telling me to kill the doc first. My Dean isn't gonna be very happy!” Man, I think I need to see about sending Doug some Thorazine to help out with those voices!

ERRATA: Just like a famous/devious/popular/scheming/hardworking/persistent [pick any one or two] presidential candidate, I “misremembered” a few things which I mentioned in my last letter. No, it wasn’t about sniper fire. The last time I was under attack from sniper fire was in Vietnam in 1971, and I haven’t written about it in any books nor mentioned it in speeches. But I’m pretty sure I remember it actually happening. Hard to “misremember” sniper fire. But I digress, as I commonly do. My chemo-addled brain (at least that’s my excuse) recorded some facts incorrectly. Doug tells me that he’s not quite as hardy as I thought, because he doesn’t keep his thermostat at 60 degrees all winter. Actually, he told me they keep their thermostat at a temperate 65 degrees all winter. “We’re into conservation, not hair shirts….” he said in a message correcting my faulty memory. And similarly, Bonnie wrote to remind me that the message I got from her last winter, about it being 43 degrees in the house, was a one-time thing. Seems they had a new dog in the house and left the patio doors open that night to allow the new pet to get in and out. But they’re still pretty tough folks; when it gets down to 55 in Bonnie’s office, they turn the heat on with the thermostat set to 64 degrees. Bonnie probably just wants enough heat to be able to feel her fingers when she’s working at her computer or doing her artwork. Let’s see, what else. Oh yeah, in writing to Janet up in Colorado I called her “Judy” in my message. Arrgh! I hate when I do that! That’s all the corrections I can think of at the moment.

And so tomorrow morning we’ll get up early again, get to the clinic (early of course) and we’ll start Round Three. I’ll let you know how the infusions and the recovery go in the coming week or so. Thanks again for all your kind thoughts, messages and prayers. I’m truly blessed to have so many wonderful friends.

Dave
dreck@prodigy.net

“Suffering ceases to be suffering at the moment it finds a meaning.” –Viktor Frankl, as quoted in the sermon at church today. The meaning, or purpose, for me is to find out if this stuff works, for all those folks who are going to come after me and will need a treatment for their disease.

Ode To Neupogen

2008-04-06T21:14:00.002-05:00

Dave’s Great Adventure, Book Three
Chapter 2, Verse 3
April 6, 2008
Ode To Neupogen

And here we
Go again,
Getting shots
Of Neupogen.

Sticking needles
In my belly.
Who devised this,
I mean…really?

Using needles
Everyday
Helps good white cells
Come my way.

Expensive drugs
Make me well
Just enough for
Chemo hell.

Neupogen
Makes me ache
This chemo stuff,
No piece of cake.

They build me up
Then beat me down
Feel so crappy
Can’t go to town.

But there’s a reason
For all this strife.
Maybe it’ll
Extend my life.

I got tired of writing prose and decided to try my hand at poetry. You know, on second thought, I’d better seriously reconsider this move.

The day after I sent my last message out I went back to the clinic to get another blood count done. I do this at least once weekly. I was pleased to hear that my counts had stabilized, though at low levels (I’ll spare you all the details of the various cell types this week; I suppose in many cases, when all these in-depth numbers start appearing on the page, many of you have your eyes roll back in your head and you start twitching and making gagging sounds…I don’t want to harm anyone). So, my counts hadn’t dropped any more in week three, in fact, they were very slightly up. But not enough to start more chemotherapy drugs next week, so I was started back on the Neupogen, which I gave myself by injection daily for four days to get my white cells back up.

Neupogen is sildenafil…oh wait, that’s wrong! Sildenafil gets something else up (it’s Viagra)! No, Neupogen is filgrastim, and is called “granulocyte colony stimulating factor” (G-CSF). The reason it’s called “granulocyte” colony stimulating factor, when what I need are neutrophils, is that “granulocyte” is another name for neutrophil. And if that’s, not enough, neutrophils are also called “segs” (for “segmented” white blood cells) and “bands” when they’re immature. Are those enough names for one kind of blood cell?

Anyway, and I think this is cool, they isolated the human gene that makes the body want to produce neutrophils (granulocytes) and somehow put it into e. coli bacteria (with a very tiny syringe?). Then they farm these guys out in Petri dishes and collect the G-CSF they make. I wonder how many e. coli they have to round up and herd into a Petri dish to make a dose of Neupogen. I suppose it’s a lot and would explain why Amgen charges almost $400 a dose for the stuff. But this stuff is magic. My white count was about 1,500 last Monday, but by Thursday morning and after just three of the doses of Neupogen, it was back up to almost 14,000 when I saw my doc for a pre-chemo checkup. Most of the white cells (just short of 12,000) were the bacteria fighting neutrophils. So I celebrated. How you ask? With big steak dinner and champagne, maybe?? No, I had a big fat Greek salad while my white count was high enough for that to be safe!

Giving myself the shots isn’t a big deal, though our friend Susanne, in Denver thought it was. She’s a nurse, and she said it was hard for her to imagine a doc giving anyone a shot, let alone to himself, and thought my actions qualified as a miracle! The Neupogen comes pre-packaged in small syringes with very small needles, 27 gauge, for those of you who are familiar with needle sizes. I inject the shots into my little (uh, maybe medium size and growing?) roll of fat on my belly, and hardly feel it. What I do feel, however, are the generally mild side effects. Usually I feel a little flu-like at first, but then I get bone pain. When the marrow gets into overdrive making new blood cells, the marrow-containing bones can feel the pressure and start to hurt. That usually includes the long bones, the ribs and the sternum. I feel the aches mostly in my ribs and sternum (breastbone) and they aren’t normally too bad. Most of the time I just take some Tylenol for the aches, but what bothers me the most is that at night, when I’m lying down, my chest hurts with each heartbeat, as the heart thumps up against the back side of the sternum. The pain isn’t all that bad, just kinda worrisome feeling that pain in the middle of your chest.

I’ve got another little problem sneaking up on me, too, one that you don’t normally associate with someone on chemotherapy. I’m getting fat! Many folks doing chemo lose weight, because of the side effects, but not me, not this time. In the past I have gained weight transiently with the steroids and fluids I have been given, but this time I’m getting almost no steroids, and far less in terms of fluid infusions with the drugs. I always watch my weight and normally weigh myself every day to make sure I’m doing okay, and usually I can keep my weight between about 176 and about 179 or so. I was at about my normal 178 when I started the chemotherapy. But as of this morning I was up to 184. It’s not the drugs, I’m pretty sure, it’s just that I’m eating too much.

You see, usually I can control my diet pretty well, and restrict myself when my weight is creeping up. But now I find that I have a voice inside that is always giving me excuses to eat a little more than I need. I think this voice is related to my Id, but is much more seductive, perhaps being my Id’s sexy little cousin or something. When my Id says I should eat more, it says, “Eat, dammit, eat!” But I can resist that voice easily and push away from the table and skip the piece of pie, or whatever. My Superego is usually in charge. But this voice I’m hearing now is much harder to ignore. If I see a piece of key lime pie, or pecan pie, or something I love (hot wings, smoked BBQ ribs, etc.), the voice, rather than demanding that I eat it, softly whispers to me, “You poor, poor thing, you have leukemia and you’re going through chemotherapy. Of COURSE you can have that pie. You can have whatEVER you want.” I, fool that I am, usually listen and eat up. I’ve got to find a way to block that voice or I’ll be at 200 pounds before I finish this regimen of chemotherapy. Who ever heard of gaining weight during chemotherapy?

Hey, I’ve had universal support for changing our Team In Training nickname from TNT to TIT…well, from at least a couple of folks. Anna, one of our walking coaches, says that she and Suzanne, another coach, have long thought that they’d get a fair amount of donations if they sponsored a TNT Mud Wrestling competition. She suggested that they’d probably attract more male participants or observers if they were in the TITs instead. Maybe that should be the Mud Wrestling CompeTITion! She’s probably right. You know, you have TNT versus TIT. Well, guys like to blow things up, and so TNT is attractive, I suppose. But, “BOOM” and it’s all over, nothing else to look at. But other things have more lasting, universal appeal to guys…. On a related topic, Meg, another team member, said I probably used the wrong people as examples of who might sign up for the wet T-shirt contests. She said she didn’t think Laura and Kelly together could fill out even one wet T-shirt, much less two (you know how runners are built, right?). Now, I never, ever would have suggested such a thing! I never even notice these kinds of issues. Really! No, I mean it…really (smirk)! But I suppose that even as I write these words, the folks up at corporate are redesigning our logos using concentric circles and conical shaped devices to draw attention to our new nurturing image.

On another TNT (TIT??) related note, you guys have no doubt noticed my frequent references to Lou and Joan, our long-time friends from Colorado who have, on a regular, pretty much daily basis, been sending me friendship and get well cards. Well, they also donate to the Leukemia and Lymphoma Society, and recently received an invitation to join a TNT team in the Denver area. They’re likely going to join up soon and do a walking marathon in Denver next October. I want all my TNT teammates to give them a big cheer, okay?

Kelly (who hasn’t as of yet officially signed up for the wet T-shirt contest but assured me that she would) wrote to comment on Tom’s suggestion that I should perhaps get a massage because of all my body aches. She said, “Yes, maybe a massage would be good for you. Although, according to your account, having to shed clothing was a startling and horrifying experience for you. Sweet revenge for all of us ladies who have ever laid on atable in the doc's office as he says "scoot down a little more...." Maybe the massage wouldn't be so relaxing for you!” (See September 1, 2004 entry of my story). Well, you know, it really wasn’t especially relaxing, because I wasn’t absolutely, completely sure what was going on and didn’t expect to have to get totally nekkid in front of a stranger, in a motel room, fer cryin’ out loud! Why should I have to get nekkid when all that hurt was my neck and back! And I wasn’t entirely sure what Martina was up to. I half expected her to grab for Mr. Happy and was nervous just thinking about that possibility. If she had, I couldn’t very well scream and run out of the room and into the hallway completely undressed, could I? “Sweet revenge” indeed! Every woman who has heard this story, including many of my former patients, has been beside herself with laughter at how uncomfortable I was, including my wife and my daughter. That’s just pure schadenfreud and you all should be really, really ashamed of yourselves at having such a good time at my timidity (is that a word?). Actually, it’s just that I’m extremely shy. Yeah, that’s it.

I probably managed to irritate both the Coloradans and the Texans with my last little bit about climate intolerance (and the Montanans, too, I suppose). Regarding Texans’ general intolerance to cold, and the similar intolerance to heat by Coloradans, my brother Dan, who lives in nearby Grapevine, Texas, wrote in to suggest it’s basically just what you’ve become accustomed to, and that cold in the fall feels worse because you’re used to the heat. And heat in the spring feels correspondingly hotter because you’re used to the cold. But I just think that we have fundamentally changed the way we acclimate to the weather in recent decades. It used to be that, for millennia, we as a species adapted to the climate. But now we adapt the climate to us. We feel the need to have a bubble of air around us that is a constant 75 degrees, or whatever, whether we’re in our car, home, at the theater, office or just about anywhere. And we use prodigious amounts of natural resources to accomplish that goal. I think the Europeans are much more conservative in the use of heating and cooling than we are. Few homes, hospitals, stores or cars are air conditioned over there, and it does reach 100 degrees from time to time, with high humidity. In Europe you just deal with it! And in the winter, the heat doesn’t come on until some arbitrary date in late October, no matter what the temperatures outside are. People just put on sweaters and go about their business. No one is ever going to mistake me for a “greenie” or a tree-hugger, but I do believe in trying to minimize consumption of resources (but just when it suits me, I guess, since I don’t drive a Honda Fit or a Prius). In the winter, we have our thermostat at 70 degrees during the day with a set back to 55 degrees at night (and did so in Colorado, too). But then there’s my brother Doug in South Carolina. He keeps his thermostat at 60 degrees all winter long. But the really tough, conservation minded folks are our neighbors, Bonnie and Quinn. I don’t think they even turn on their furnace until the outside temperature is below freezing. Or unless they’re having company. I remember an e-mail I got from Bonnie last winter and she said the indoor temperature in their home was, I believe, 43 degrees! But now I’ll get off my conservation soap box.

This last week has been a pretty good one for Kathy and me. I’ve felt better and we have been able to get out some, though we still avoid crowds. The flu is still officially present, though I haven’t heard on even one person who actually has had it. But we’ve been able to get out to an occasional restaurant (where “the voice” always encourages me to ingest far too many calories). Generally we try to go out during the off hours when places aren’t very crowded. We’ve also made it to a few stores for just a little bit of shopping. But yesterday, we got out and made a short daytrip up to a nearby lake and had a great afternoon just being outside. We played a couple of card games and just enjoyed the beautiful spring weather with temperatures in the mid-60s. It was so nice to be outside, because we know that as of next week, starting tomorrow, we’ll be trapped in the house again for a couple of weeks.

And I think I’ve rambled on long enough for now. I’ll close this and get it in the mail. Thanks for all your “fan mail” that I’ve gotten. I always enjoy your feedback. Until next time….

Dave
dreck@prodigy.net

Feelin' A Little Low

2008-03-30T21:37:00.001-05:00

Dave’s Great Adventure, Book Three
Chapter 2, Verse 2
March 30, 2008
Feelin’ A Little Low

Man, I had a dickens of a time with the last letter, trying to decide how to start out my story about how this is the best regimen I’ve been on but which has the worst side effects so far. And I barely touched on the tale of the two cities which are managing my care, with Houston pulling the strings with Denton trying to do as they’re told at long distance, but this message will be a lot easier to start out. Every thing is low. Well, not quite everything.

Last Monday I went back in to get another blood count done. I wasn’t surprised to find that the total white blood cell count was only 1,100. That included about only 400 neutrophils (the good guys), a couple hundred lymphocytes (potential bad guys), and 400 monocytes (monocytes are white blood cells which circulate in the blood until they find a foreign invader, like a splinter or bacteria or something, at which time they migrate out of the blood and into the tissues and become the macrophages you may have read about in biology, which destroy foreign stuff). There was also a scattering of a few other normal cells called basophils and eosinophils, but usually they’re in such low concentrations they don’t even matter.

What surprised me, however, was that even with these low counts, I wasn’t started back on the Neupogen to boost my neutrophil counts. My white cell counts (which reflect the state of my immune system) after only two cycles of the new regimen, are almost exactly the same as my counts were back in 2002 after four cycles of FCR, and those low counts, as I’ve related earlier, led my doc to stop the infusions. “We’re just beating the crap out of your stem cells now,” he said back then. I really thought we’d start the Neupogen again to get me ready for the next cycle, but that’s not yet the plan. I suppose (I hope) we will start it up again after my blood count on Monday. My next cycle of chemotherapy is supposed to start on April 6th.

What also surprises me is that I really haven’t gotten sick. It seems that with my immune system so weakened, and with my body crawling with microbes, I should be getting a sore throat or a cold or pneumonia, or something. So far the worst that’s happened is that a chronic sinus problem is trying to flare up and so I’m taking a short course of antibiotics to suppress it. But that’s all. We have been very careful to avoid crowds and haven’t been to church, concerts or plays for a few months now, but even so, you’d think I would have to pick up something from time to time. But so far, so good.

The chemotherapy is designed to attack primarily white cells, but I have also mentioned that the Cytoxan is more of a “bombs away” type of agent. It destroys about anything it comes across. So, the drugs affect my other blood cell counts as well. Other than my white cells, what’s been most affected incident to the chemotherapy are my platelets, the cells that are active in causing blood to clot. Most folks have about 200,000 to 400,000 of these cells (per milliliter of blood) but my counts have been dropping down to the 150,000 range and below ever since my first chemotherapy back in 2002. But as of last week they were down to 60,000. Now, that’s pretty low, but fortunately blood clots pretty well as long as you have at least 20,000 or so of normal platelets circulating. My red cell counts have been slowly dropping too, but are nowhere near critical. My hematocrit, a measure of the number of red cells in your blood, was always about 48% when we lived in Denver. Normal is about 36% to about 45% or so. My 48% was a little high, but that’s because I lived in Denver, at a mile high, and when you live where the air is thin, you make more red cells. Also, being a man, I don’t lose blood each month like most women do, and so men typically have a higher hematocrit than women. My hematocrit has dropped to 36% now, the lowest it’s ever been, but it’s not at all worrisome. It just seems to be showing a slow downward trend. I expect it to rebound nicely after we finish up with the chemotherapy.

The reason that all my cells are affected is that all of them, the neutrophils, lymphocytes, red cells, platelets, etc., all come from the same population of stem cells. The stem cells magically grow, divide and make whatever cells we need unless they are affected by outside forces, like leukemia or chemotherapy. Since I have both issues, it’s little wonder that my cell counts are skewed. That’s probably enough detail for Steve, so I’ll stop with the technical stuff for now.

The aches and pains I mentioned in my last letter have slowly diminished, but haven’t totally gone away. I don’t have the headaches or general body pains anymore, but many of my joints still hurt when I stress them, just by moving them in some cases, more often by putting pressure on them. I’m finally to the point that it doesn’t hurt too much to roll over in bed. It makes it hard to get much sleep when every movement at night hurts. I hope the Avastin works if it’s going to put me through these body pains at each cycle.

By an unhappy coincidence, the husband of one of our TNT coaches is also taking Avastin now. He has a basal cell carcinoma; you know, the little ditzels that many of us have had frozen off our skin at some point. Except that his basal cell skin cancer has spread to his lungs, which is an extremely rare occurrence. Only about 300 similar cases have ever been reported, so treatment options are not well documented with this rare condition. Anyway, Larry has been given one round of Avastin with another drug and so far he has had few of the body aches and pains that I’ve experienced. So I wonder if it’s really the Avastin causing the body aches, or the Avastin in combination with all the other powerful toxins I’m getting (which did not cause me pain in the past) or if it’s maybe the fact that I’m not flushing the stuff out by taking in large quantities of fluids like I did in the past. At any rate, we have decided to take the advice of our friend Kathy in Atlanta, and do the “consume mass quantities” of fluids during and after the next round of infusions. I’ll be drinking lots of water, ginger ale and tea for the three days of the infusions next month in hopes of reducing the side effects. We’ll see if it works.

Speaking of TNT, you know, really, TNT isn’t the acronym, or even the initials of Team In Training, is it? It should be TIT, right? Man, we’re missing out on a great marketing tool by not using the correct acronym. Think of the interesting logos we could have in our advertising. Think of all the guys who would join up just out of curiosity about what the TITs were all about. I’ll bet we could sign up Hooters and Bone Daddy’s Restaurants as corporate sponsors (For those of you not in Texas, Bone Daddy’s is a great chain of BBQ restaurants. It also happens to employ very healthy young ladies who wear hot pants and tight tank tops.) and I’ll bet that many of the gentlemen’s clubs in Dallas would sign up as well. You know, we could even eliminate those long, hot, sweaty marathons and have wet T-shirt contests instead. They’d be easier to train for and might bring in bigger crowds! Of course, we’d have to be highly selective in who we entered in those contests, because not many folks would pay to see me or Martin in a wet T-shirt, but I’ll bet Laura and Kelly would volunteer, don’t you? Actually, after lots of training runs I’ve seen Martin in a wet shirt. Not a pretty sight. But I really think we need to run this idea past the suits at corporate, don’t you? Just a thought.

I heard from several folks about Texans and snow. Sounds like Texans deal with it a lot like the folks in South Carolina. My brother Doug said this: “One rogue snowflake starts terrorizing the countryside and they hit the grocery stores, buying out all the milk and bread and toilet paper, enough to last until the spring thaw.” On TV interviews I’ve heard folks here say essentially that. People get accosted in store parking lots by the ever-present and ever-obtrusive reporters who are desperately looking for something on which to report, so they stalk folks at exits from grocery stores and Blockbuster shops, coaxing “statements” out of them. But I have heard people say that, yes, they were stocking up on bottled water, chips and DVDs to ride out the “storm” when snow was approaching.

I’m a “restored” Texan, having moved back to the state I grew up in after twelve years on the frozen tundra that is Denver. I remember blanching at hearing that the temperatures there got down into the single digits or below on a regular basis in the winters. Can people really survive in those temperatures, I wondered? All I knew of Denver weather was what I saw on weather reports, and of course those weather reports only showed Denver when there was a lot of snow. I thought it was cold up there all year long! But it’s not, and yes, people can survive and do very nicely in those single digit temperatures.

And I now remember that there is a different definition of “cold” here than there is in Denver. Around here, when it gets into the 50s, or even 60s sometimes, many folks bundle up in coats and knit caps. A couple of days ago I was leaving the community and the car indicated that the temperature was 64 degrees. Some of the workers out here were wearing their parkas with the hoods up! Parkas!

In Boulder, near Denver, there is an annual “Polar Bear Plunge.” It happens, I believe, on New Year’s Day, and a bunch of truly insane folks go to the reservoir, break a hole in the ice, and they voluntarily jump in the water. Well, we too have a “Polar Bear Plunge” in our community here in Denton. It happens in the community swimming pool in April. The last time they held it there was a statement to the effect that, “Cool temperatures in the low 80s kept many participants out of the water.” Are you kidding me? What kind of “Polar Bear” can’t stand temps in the 80s! A “Wussie” Bear?

And you’d think that if Texans can’t stand the cold, they should at least be able to stand the heat. But no. If the temperature is over about 75, most cars have their air conditioning going. And on a regular basis you can see folks sitting in store parking lots, running their engines with the AC on for thirty minutes to an hour while their spouse is inside shopping. It drives me nuts to see this, with them wasting gasoline and adding to the horrible air we have around here, instead of just rolling down their windows.

But, hey, the Denver folks are just as bad about heat. They think anything over about 75 or 80 is “hot.” Just as Coloradans snicker at Texans about the low tolerance to cold, Kathy and I snickered every time we heard the weatherman in Denver talk about the “scorching” temperatures in the 90s. That’s just another summer day in Texas. When we moved to Denver we came from El Paso where it was over 110 for days on end. The air is extremely dry in Denver, with the humidity often in single digits so the temperatures in the 90s are easy to tolerate because it’s so dry. At least I thought so. In Colorado they keep track of the summer days that reach 90 or more. Heck, here in Texas we don’t keep track until the temperatures get over a hundred! If the temps ever reached 100 in Denver, well then, they get the reporters out doing “man in the street” interviews about how folks manage to get along when it’s so hot.

My sister-in-law Sharon, up in Montana, wrote to correct me for joking about Montanans having the AC on in their homes when the temps were above 60. Seems most homes up there don’t even have AC. But, she said, they do run the AC in their cars when it’s over 70. She’s sort of joking, but not really. Her husband Ray wrote to me a few years ago to confess that he found himself running the car AC when it was about 70 outside, and mused that it was so different from what I do, because I don’t typically turn on the AC in the car until it gets to about 90 or thereabouts. It’s just that I’m a miser and running the car AC, under most circumstances, costs about 10% of your fuel economy. So using it a lot makes your $3.00 gas really cost $3.30 or so. In any case, the folks in Montana are only marginally worse than Coloradans in heat intolerance, and they’re followed closely by us Texans. I guess it’s just a matter of what climate you’re accustomed to.

My brother Doug also wrote in and clarified that to him, the “D” in PDQ definitely stood for “damned.” At least when he uses it. He apparently uses this somewhat archaic term on a regular basis in his work at Winthrop University in Rock Hill, SC. Everybody knows kinda what it means, but many folks don’t know the precise definition. Debbie, my great friend and the wonderful nurse who kept me on schedule for years when I was working up in Denver, wrote to thank me for defining PDQ. She said that when she was growing up, her mom used the term regularly. She used to hear, "You kids better get this mess cleaned up PDQ, your father will be home in a few minutes...." Instinctively she knew it meant to get things done in a hurry, but didn’t know what it stood for (she is unashamedly a blond!) until I clarified things for her.

Our good friend and former neighbor, Tom, checked in with this: “Sorry to hear about the aches and pains, but I recall you are familiar with a masseuse and maybe you need to give her a call....” As a matter of fact, I think I still have Veronica’s number.

And of course, we get cards and e-cards from Lou and Joan just about every day. Thanks, guys. And Happy Birthday, Joan.

That’s probably plenty for now. I’ll check in again when I know what my white cell counts are and what the plan is leading up to my next round of drugs. Bye for now.

Dave
dreck@prodigy.net

TOTAL--BODY--PAIN

2008-03-21T08:59:00.002-05:00

Dave’s Great Adventure, Book Three
Chapter 2, Verse 1
March 21, 2008
TOTAL—BODY—PAIN

It was the best of times, it was the worst of times. It was a time…. No, no, I don’t think I can say that. I think someone has used those lines before, maybe the Beatles or somebody.

The seasons change, and for every season there is a purpose…. Oh man, that’s been used before too. Was it the Byrds? Yeah, I think so, but they ripped off that band Ecclesiastes for their lyrics, didn’t they?

Okay, the seasons changed here in Denton and now it’s spring.

Now, just writing that line I can hear my friends and kinfolk in Florida chuckling. For them it’s been spring every since last November when summer ended. That’s about all they have…summer, spring, summer, spring, with an occasional short season called “hurricane” when they get bored with good weather. And I know that our friends in Colorado have had some nice sunny days up in the 60s that tease them into thinking that spring is coming, but I know those guys still have a couple months of snow left. March and April are supposedly the snowiest months in Colorado. Hey, the last freeze up there isn’t until after Mother’s Day [memo to self: look for Mother’s Day cards soon]. And our relatives up in Montana can only dream of those sixty degree days. Heck, when it gets up to sixty or so, they turn on their conditioning. I exaggerate, perhaps, slightly.

Anyway, it’s spring here now. But it didn’t come easy. Last week we had SNOW here in north Texas. That’s a problem, and a curiosity, because snow and Texas don’t belong together in the same sentence. First, on Monday, about ten days ago, we had some snow flurries and the local news types were falling all over themselves running around town finding car windshields covered with snow so they could give us a live report. Even more absurdly, about six weeks previously one of the local stations sent a reporter about fifty miles out of town to give us a live report of snow flakes falling in the area of the small community of Rowlett. Nothing was sticking on the roads, or even on the grass, but there was frozen water floating down from above and it needed to be reported on.

But last week, we had SNOW. Or what passes for snow in Texas. We had a heavy, wet, slushy snowfall of about six inches in the Denton area, less as you went into Dallas. It piled up on the grass, and the roads got slushy but they were never snow-packed or frozen. But, if the reporters went nuts over snow flurries the previous Monday, what do you think they did with SNOW! Man, they broke into the national news to report the “winter storm.” We had live reports from slushy streets to watch the traffic, wondering if the cars could actually make it through the slush. They could. Very exciting stuff, that traffic.

Now, in north Texas, it doesn’t even take snow to bring the city to a halt. All it takes is the threat of snow. If flurries are predicted, restaurants and businesses sometimes close early, people change their plans and schools let the kids out a couple hours before the end of the day, and everybody rushes home to watch the weather reports. Probably like the folks in Florida do during the season called “hurricane.”

So you have to know already what happened last week when we had SNOW. Things closed down Thursday, and many, if not most places were closed or on a delayed schedule the next day, too, despite the fact that it was going to be bright and sunny. In fact, the next day was the day I was scheduled to take my B-17 flight and it went off just fine, demonstrating that the weather was a non-factor even for an antique bomber. But it was a factor in Denton. I was scheduled for a doctor’s appointment and some pre-chemotherapy lab tests at 9AM that same Friday. We got up early to go in and be there on time.

We were ready to leave at about 8:00, which was, of course, way early, but that’s the way I’ve been trained to be since I’ve been married. That’s when the phone rang. A clinic employee called from her home to tell us not to come in, that the clinic couldn’t open and that we should call back at about ten o’clock to see if they could reschedule me. Well, I had a bomber flight to catch and I couldn’t be waiting around to be rescheduled for that afternoon, or possibly even later, since I was supposed to start my therapy the following Monday. So instead of waiting around and calling back at ten, we just went on in at about 9:15! I figured it would be harder for them to put me off if I was at their door in person rather than being a voice on the phone.

The day was really very nice and bright. The temperatures were in the mid-forties or so, and the roads were mostly just wet. Traffic was flowing normally. When we arrived at the clinic we were surprised to find it not only open, but crowded with staff and patients. We signed in and in fact, got right in for the labs and my appointment, though we were late for both. The news was good. The Neupogen was working, my white count was up to about 16,000, mostly neutrophils, and we were on track for a Monday start of Round Two. So far, so good. We took off for Ft. Worth and my ride in the old bomber.

But “The Blizzard of ‘08” wasn’t finished causing problems for me. On Monday morning we went in, early of course, to start the drugs. We picked out an infusion recliner and waited, and waited. The drugs weren’t ready, the orders hadn’t been written, and mostly, the labs that we had drawn the Friday before, lab tests measuring my kidney functions which were critical to have before starting the drugs, weren’t back from the laboratory. Seems they went out late on Friday, couldn’t be done on Saturday, and the one person in Dallas, or whatever, who could run the tests, wouldn’t be in until after 11:00 on Monday! They finally sent us home with instructions to call back in a couple of hours to see if we could get things going, but it soon became obvious that the first infusion, which was going to take six to seven hours, wasn’t going to get done that day.

But we came back the next morning and everything went much better. The lab results were back and were normal, the drugs were ready and the staff was ready to plug me in. Off we went! The plan has now changed a bit. I had four days of drug infusions in Houston, but since I did well and had no complications or reactions, from now on I’ll have all the drugs given in just three days. That’s great, because the shorter the time I need to be tied down to the infusion room the better I like it. Still, the three days can be long, being seven, four and about three hours long each. But they went well and without complications.

This new regimen is probably the best I’ve had in many ways, if the goal is to kill off white cells, especially lymphocytes. As my brother Doug, out in South Carolina (where they’re finally getting the rain they’ve been wanting for a couple of years) said in a message, not too long ago, “Everything they give you seems to knock out your white cells pdq” (for you youngsters, that means “Pretty Damned/Darned Quick”). That’s been true in general, but it’s especially true now. I’ve mentioned how low my counts went just weeks after the very first round of drugs. My total count went from almost 90,000 to 2,400. So I had another blood count done just four days after we finished my second round of drugs and my count was already down to 1,600! The good news was that most of the remaining white cells this time were the neutrophils I need to keep me free from infections. I was amazed, however, to see that my lymphocyte count, which had been about 81,000 before we started all these drugs last month, was now down to 100. That’s one hundred…no typo there. And that was a week or two away from the nadir or low point, which we expect in the next ten days. That’s good, because that’s what the drugs are supposed to do, but I need SOME lymphocytes to make antibodies. I’m wondering how close the folks at MDA are going to let me get to the jaws of death before I am (hopefully) snatched back. As before…stay tuned, this really could get interesting.

But if this is the best drug regimen I’ve been on, it also is the worst of all the regimens I’ve tried in terms of how it makes me feel. In the past I’ve been tired, been fuzzy brained, lost hair, and all those things, but this new stuff hurts! It almost has to be the Avastin, because I’ve had all the other drugs before. After the first round I had horrible headaches and neck pains for a while. But after the second round, just about everything hurt. I had muscle pains, neck pains, back pain, chest pain, bone pain, joint pain, and especially head pain. Miserable, lousy, splitting headache pain. Those of you with migraines will appreciate what I’m speaking of. I went through a lot of pain meds and muscle relaxants that my doc had given me after I complained about the muscle spasms and headaches after the first cycle. They helped, but it took days to get past the “really bad pain” and into a state of “just some pain.” Even now, it hurts to clench my fist, lean on my wrist or elbow, or raise my arms. I hope this is a temporary thing. But if it’s not, I guess it’s the price of doing business with Mr. Leukemia.

Now I’m back to where I was a few weeks ago; feeling better enough to be bored by inactivity but entering my nadir time and unable to be around many folks. I will be incredibly interested to see where my white counts are when we go back into the clinic on Monday. I’m thinking they’ll be below 1,000 and I’ll be started back on the Neupogen. We still have about $2,400 worth of the stuff in the refrigerator next to the yogurt.

If one of the purposes of the change of seasons is to warm things up after the winter, then it serves to remind large mammals to start shedding excess hair. So, right on cue, I started losing hair from the first round of drugs. It took about three weeks, but a substantial amount of stray hair started showing up floating on the surface of the bathtub water. It’s really not a noticeable amount of hair loss yet, after just one round of drugs, but the other resident of our home says she can tell the difference as she runs her fingers through my tresses. If worse comes to worst, I’ll shave my head again and wear my “Wish You Were Hair” hat that Kathy got for me the last time I shaved it all off.

With my white counts being so low, I am, as I’ve too frequently mentioned, very susceptible to infection. One reason I haven’t yet gotten sick is that I’m taking a couple of drugs to try to keep me relatively healthy. I mentioned the Valtrex I’m taking a few weeks ago. I take it daily to minimize the risk of getting viral infections or reactivating old infections, like chicken pox and so forth. But I’m also taking Bactrim (also called Septra) on an odd schedule. This is a drug often used for bladder infections, bronchitis, etc. In my case, it’s being used to reduce my chances of getting pneumocystis carinii pneumonia, an infection most commonly seen in folks with HIV infections. Lots of folks have pneumocystis carinii in their bodies, but like many of the germs I mentioned a few weeks ago that commonly use our body as a home, it causes no problems in the presence of a normal immune system. Folks with compromised immune systems, like those on chemotherapy regimens, are at risk, however. So I take the Bactrim, one tablet twice daily on weekends. That seems to be all I need, though it’s a change from the way I took it in 2002, when I would take one tablet every Wednesday and Saturday.

I thought about asking my doc to reduce my dose of Zofran for this cycle, since it has the well-known ability to transform hamburgers into concrete within the body. But when I mentioned this he said, no, no, that Zofran caused diarrhea. Huh? I looked it up. Zofran can cause constipation or diarrhea. Now, I ask you, how can that be? How can one drug cause side effects which are polar opposites of each other. So I didn’t get my dose reduced and am paying the same price. Oh well. The price of doing business….

Say, Kelly (our Honored Hero co-captain) gave me an enthusiastic “thumbs up” for writing a book. She said my stuff compared very well to the Captain Underpants books she reads to her kids at bedtime. Uhh…should I leave out the stuff about massages and beavers if I do?

I heard from Bobbie again after my little story about the B-17 I flew in. I have mentioned that Bobbie was a feisty German gal. Well, in the early 1940s Bobbie was a young German citizen and she watched from Frankfurt, Germany as the B-17s flew overhead. Back then they were on business trips, not the pleasure cruise I took, and they were dropping tons and tons of bombs on the city. Frankfurt was devastated by the bombing. When I was stationed there in the early 1980s, during various construction projects they were still finding occasional bombs that had to be excavated and disarmed.

In closing this update let me tell you that I was happy to find that some of my mutual funds include Genentech, the maker of both the very expensive Rituxan and the even more expensive Avastin I am taking. You know what that means? It means that when you taxpayers out there are buying these drugs for me, you’re also boosting the value of my mutual funds! I’m sure my cousin/stepbrother Tom out in Florida will be even happier to hear about that!

And with that I’ll close this update. Hopefully Kathy and I will be able to see some of you in the DFW area in the next week or two as I return more to normal, presuming my white counts permit us to be out and about.

Dave
dreck@prodigy.net

Ecclesiastes 3:3 (Early description of chemotherapy)
“A time to kill, and a time to heal,
A time to tear down and a time to build up.”

Survivors

2008-03-09T21:26:00.003-05:00

Dave’s Great Adventure, Book Three
Chapter 1, Verse 8
March 9, 2008
Survivors

Over 12,000 B-17s were built before and during World War II and this aircraft was instrumental in the American war efforts in Europe. It flew higher and farther than most other aircraft of its type and flew strategic missions to places that were heavily protected and very dangerous for the Allied air crews, like oil refineries, munitions factories and railroad facilities. For most of the war it also flew farther than its fighter escorts could, and so was heavily armed with a dozen or more fifty-caliber machine guns so its crew could defend themselves against the enemy fighters sent against them. For this reason it was called the Flying Fortress.

But the B-17 wasn’t invincible. Over 4000 of them were lost in combat with the loss of over 45,000 crewmen. They were flown in huge flights of up to a few hundred planes, towards target areas known to be defended by antiaircraft artillery and fighters, and these large gatherings of aircraft, sometimes called “aluminum overcast” (as one surviving B-17 is called), were easy targets. Missions over defended areas of Europe frequently resulted in losses of ten to fifteen percent or more of the bombers.

Though the loss rates were often very high, the B-17 gained an almost mythic reputation as a survivor, a plane that could take horrendous damage but still manage to get home safely. There are many, many stories of badly damaged B-17s, some missing the entire nose, some missing parts of wings or tails, or with large holes in the sides of the fuselage, coming in for landings back at their bases in England or Italy. One plane was so badly damaged that the other airmen in the formation declared that they had seen it destroyed, only to see it show up, late and heavily damaged, at its home base in England. One of this plane’s crewmen said, “The plane can be cut and slashed almost to pieces by enemy fire and bring its crew home.”

I had signed up for a flight on “Nine-O-Nine,” a restored B-17 named for a famous B-17 which had gone through 140 missions without being damaged or aborting its mission. It was flying out of Alliance Airport in Ft. Worth, as part of the Wings of Freedom tour of three historic World War II aircraft, also including a B-24 and a B-25. These planes are survivors too, this B-17 being only one of about fourteen of the original 12,700 B-17s manufactured that still are in flyable condition. I was going to be flying on a plane that is older than I am. A mobile, flyable piece of history.

While we were at the airport, watching the planes come in for their landings, we stood near a woman about our age, who was watching intently. We talked to her and asked if she, too, was taking a flight. She wasn’t but was very interested in the B-24 “Liberator” bomber that was coming in. Her dad had been a bombardier on a B-24 during World War II and had died in a crash in New Guinea before she was born. Recently the military found the wreckage of the aircraft and recovered a couple hands full of human remains, all that was left of the crew, but they were brought back and the family was finally able to bury their lost airman. She wanted to board the B-24 and sit in the bombardier seat. She said she’d probably bawl the whole time.

To fly on the B-17, I had to sign a waiver. The waiver signed away my rights (or Kathy’s, actually) to sue in case the plane didn’t have a happy landing after taking off. The waiver form said that the plane had a “provisional” certification from the FAA, which means, I suppose, that it’s known to take off and land safely most of the time but doesn’t meet current safety standards. I signed it, as did the few other “passengers” that were going along. We climbed into the plane, quite literally because there were neither steps nor gangway. We grabbed a handhold over the rear hatch and lifted ourselves through the opening. The plane obviously wasn’t made for passengers or comfort, so it’s neither heated (which is why they invented "bomber jackets") nor pressurized. Plus, there are no seats except those for the pilots and a couple of the original crew, like the radioman and the bombardier. We sat on the floor in various places around the plane as we took off, strapped to the sidewalls of the bare aluminum fuselage with antique military seat belts. They told us that once we were airborne we could unbuckle and roam around the plane, but that we shouldn’t lean on the hatch we had entered through, as it was made for easy exiting and could give way under pressure. No one went near it during the flight!

I had ear plugs for the flight, as four 1200 horsepower air cooled engines make a lot of racket. And I had multiple layers of clothing, because the ground temperature was in the 40s when we took off, and it was even cooler up in the air (and the bomber has an open hatch on top through which you can stick your head into the 160+mph slipstream if you want, which of course also lets in a very cool blast of air). But what I needed, I found out, was a “hard hat.” Climbing through the hatches and clambering among the bomb bays and passages, I kept banging my head on metal edges. No serious damage was done, but it hurt. It was quite the adventure to be crawling through this ancient aircraft, sitting in the bombardier’s seat, manning the waist guns or even looking out the top gun turret, as it flew over north Texas. Too soon we were given the signal to re-buckle in our takeoff positions and prepare for landing.

Tom Landry is an icon in Texas. While I was living in Texas during my med school years and beyond, he coached the Dallas Cowboys, back in the glory years when the media declared them to be “America’s Team.” At least once, during every broadcast game some announcer would introduce him as “the only coach the Cowboys have ever had.” He coached the team during some great years but was unceremoniously fired when Jerry Jones bought the team many years ago. Well, Tom Landry died of leukemia about eight years ago, and each year there is a leukemia benefit in Dallas in his name. And Tom Landry flew B-17s during WW II, though that wasn’t ever mentioned by the sportscasters. He flew thirty missions in these planes and survived a crash landing in Czechoslovakia during the war. Additionally, his older brother Robert also flew B-17s and was killed in a crash.

Meanwhile, my bone marrow has been doing its best to survive the first round of chemotherapy, after having been intentionally but heavily damaged. I told you that I’d be getting daily doses of Neupogen, which I’ve been giving to myself after the nurse “certified” me in giving myself subcutaneous injections. After three days of Neupogen my white count had risen from a total of 2,400 with only about 360 neutrophils and 700 lymphocytes, to a total count of 16,900 with 12,900 (!) neutrophils and 1,100 lymphocytes. So the Neupogen worked very well, as it should at $400 a shot (made by Amgen, if you want to know). It raised my “good guys” significantly with only a very small rise in the number of lymphocytes. If my marrow survives, I survive. I saw my doc here in Denton on Friday and he pronounced me well enough to begin Round Two. And so we will. My appointment is a little before Nine-O-Nine on Monday morning and off we’ll go.

Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/
B-17 pictures below:
http://www2.snapfish.com/share/p=54691205104447181/l=352500024/g=28835691/otsc=SYE/otsi=SALB

Of Anniversaries and Life's Celebrations

2008-03-05T12:32:00.002-06:00

Dave’s Great Adventure, Book Three
Chapter 1, Verse 7
March 5, 2008
Of Anniversaries and Life’s Celebrations

We all celebrate anniversaries of various types. Some are national anniversaries, like the Fourth of July or the remembrance of D-Day, and the like. But most of the anniversaries we celebrate are more personal. The one we most commonly celebrate is our birthday, for if we hadn’t survived that trip into our world we wouldn’t have the annual gathering of friends and family with the cake, candles and gifts, and the ritual of having songs sung badly to us, sometimes with references to monkeys and zoo smells, too.

And there are other anniversaries. The anniversary of the start of a job, when you might get a small raise in pay, or the anniversary marking many years at that job, when you might be able to hang it up and retire. And there are the dates we remember because they are special only to us; the memory of a first date with our future spouse, or the time we moved to a far-off place (“Omigosh, has it really been twenty-six years since we moved to Frankfurt?”), or more importantly, the remembrance of a wedding anniversary, a most important date that husbands fail to remember only under pain of icy stares and a curt “Nothing” as the answer to the question, “What’s wrong?”

I was reminded of anniversaries again this week. I joined many of our teammates from TNT at a couple of training sessions, staying distant from those who were sniffling or coughing. Kim is one of our teammates and was there. As of a couple of weeks ago she is three years out from her treatment for a lymphoma and celebrated a clean bill of health from her doctor, still having no signs of the disease. The team threw her a party, for few things are more important when you’ve had cancer than the celebration of your victory over that disease. And I also saw Ethan this Saturday morning at training near Grapevine Lake, where the team runs each weekend. Ethan is nine years old and is about to celebrate his sixth year in remission, after having been treated for leukemia when he was but three years old. He’s doing just great.

Ethan and I share a sixth anniversary. That Saturday when I was out with the team marked almost exactly six years since I found out that I had leukemia. Our anniversaries are a bit reversed however, as he’s celebrating six years of being disease free, whereas I’m celebrating six years of having the disease. Now, you might not think of that as something you’d normally want to celebrate, but to me it is. You see, when I first saw my oncologist back in early 2002, he told me the average survival with my disease was about six to ten years. Pessimist that I am, I zeroed in on the six year figure, figuring that’s when I was scheduled to die, in 2008. Many of the things we did subsequent to my visit with my doctor were based on that assumption, including moving to Texas to be near family and buying a home in a retirement community so Kathy would have built-in friends, neighbors and activities when I died this year.

I’ve spent my anniversaries with ups and downs in the course of managing my disease. On my first anniversary, in 2003, I was in a great remission, after having completed four cycles of the brand new FCR (Fludara, Cytoxan and Rituxan) chemotherapy regimen. But by my 2004 anniversary, I had started to relapse and underwent more intense chemotherapy and a stem cell collection. 2005 was good. I was in remission again, but found out six months later that I was relapsing yet again. The 2006 date was marked by watching my white count slowly climb, though it was doing so very slowly at the time. By 2007, however, it was starting to climb more rapidly and it was time to do something. So, on my 2008 anniversary, I’m celebrating six years of living with this disease and doing just about as well as one can do when you have leukemia. I’m still alive and death is apparently not imminent. And I’m celebrating being able to try out a new course of therapy for my disease. And just what should I do to celebrate this anniversary?

Our younger son asked why we were doing the FCR again, when I had relapsed within a year of finishing using it years ago. Fair question. First of all, there is a small subset of folks who have been given the FCR and seem to have been cured. Years after their treatment with this regimen, they have no signs of the disease and even very sensitive testing shows no molecular evidence of CLL. The folks at MDA have told me on several occasions that they think we stopped too soon when we quit after only four cycles back in 2002, the implication being that I might have had a longer remission or even achieved one of those possible cures if we’d been more aggressive. Further, the testing of this regimen against other “standard” treatments for relapsed CLL shows that it has become the best available regimen, achieving the longest remissions.

So, on this anniversary we’re using FCR again and, as noted multiple times, adding the drug Avastin to the regimen. It’s important to remember that the Avastin has not been used in CLL before and its addition to the FCR is not designed to effect a cure, but rather to hopefully help me get into a deeper and more durable remission, during which time a cure may be found. Remember that Dr. Keating has sort of “promised” me a cure within my lifetime.

Meanwhile, things are going sort of as expected, but not really according to plan. My white count dropped dramatically after my first series of infusions, as I’ve previously reported. That’s what the chemotherapy is supposed to do, but the white cell numbers dropped further than I, and apparently the staff here in Denton, expected. The low point, or nadir, is generally about 10-14 days from the infusions. So, we were expecting a “bounce” in my numbers this week, which is now three weeks from the start of my infusions in Houston. Surprise! My numbers are continuing to drop. My white cell count as of Monday was 2,400 with only 900 neutrophils. Remember that I had about 1,400 neutrophils last week. Therefore, most of the drop in the last week was in neutrophils, which are the white cells we want to protect since they kill off the bacteria that surround me at all times and attempt to invade my body every day. This continued drop is likely an Avastin effect.

With that low count, which was done by cell-counting machine, the lab followed up with a more accurate manual count, just to be sure of what was going in. The manual recount (sounds like election stuff, huh?) came up with a neutrophil count of only 360!

That low count apparently triggered some phone calls to Houston and discussions about the next step. It first of all is hard to imagine giving me more chemotherapy when the first round has damaged and depleted my marrow so extensively already, yet I’m scheduled to start again next Monday, the 10th. Secondly, if I get more drugs starting on Monday, should the doses be reduced? And lastly, should I be given injections of white cell growth factors (Neupogen) to help bring my neutrophil count back up?

Last things first. I mentioned the white cell growth factor in my last letter. I’ve had it in the past, when my counts were very low, but the use is controversial, because though the drug is designed to stimulate the growth of neutrophils (good!) it can also stimulate the growth of CLL cells (obviously counterproductive). But first I need to survive the treatments. So, the “art” of medicine came to the fore again, trying to balance the good and the bad, and as of Wednesday I’m getting shots of Neupogen daily, for at least a few days (at about $400 a shot). We’ll see what my counts are doing by the end of the week when I see my doc in preparation for the next round.

And the folks at MDA said that, no, they wouldn’t stop the infusions or reduce the dosages if my counts are depressed but they would consider waiting longer between rounds of infusions. We’ll have to wait until next Monday to see if my white counts have recovered enough to continue for now, or whether we need to wait a few days or a week or more. Stay tuned, as this might get interesting.

I received a number of nice messages from friends and family after my last letter. Our neighbor and good friend Bonnie checked in with a question about whether I was sharing all my self-medication regimens with my docs. Good question. They’ve asked about every single thing I’m taking; supplements, baby aspirin, Motrin, calcium, Imitrex, etc., so they know about all the drugs I might use, but I hadn’t told them specifically what combinations I use on occasion, like when I had the miserable headaches after the first round of infusions in Houston. Speaking of which, I recalled having a similar situation with horrible headaches at some point during my first round of FCR and needing more than usual amounts of drugs to knock it out. I looked through my old letters and found that I had just about the same reaction and took just about the same combination of drugs just after my first infusion of just FC back in July 2002, even before I had the Rituxan. So, I can’t blame the Rituxan but rather the destruction of billions and billions of white cells for that lousy headache.

In the last letter I told you I’d heard from my step-brother/cousin Tom, down in Florida. Nobody even asked about that tangled, hillbilly description of our relationship. Well, just to make things more interesting, this week I heard from Charlotte, up in Iowa, who is my double first cousin, once removed. Charlotte told me that my descriptions of what was going on with my treatments were very educational and she enjoyed reading about them. She also mentioned how sad it was watching the video clip I attached, about the professor who was dying of pancreatic cancer but nevertheless continued to talk about the great things he had enjoyed about his life. Yes, it was sad. I think he is an exceptionally brave guy and I hope I can be like him.

And I had just sent out the last letter, with the description of “Cin Chili” sold by Cindy, the sister of our friend in Colorado, when Kathy’s sister wrote that she had just seen Cindy on the TV in Albuquerque and that she was in town at a Fiery Foods Festival. So, Carol and Frank went to the festival, got their taste buds scorched by sampling copious amounts of spicy goods and bought some Cin Chili mix and a batch of prepared Cin Chili too.

We heard from Bobbie again. Bobbie lives in El Paso and has been a friend for many years, as she was our realtor when we were in Germany and were renting out two homes in that town. Bobbie is a feisty German gal and said she was sending some of her guardian angels to be with me and turn everything around for the best. She said that the Germans were stubborn and she was sending stubbornness to me as well to give me the strength to fight on and win. There’s a lot of German blood in me too, from my mom’s side of the family. My wife has always said I was stubborn. That’s why, I guess.

We heard from Larry this weekend, but not with an e-mail. Larry has been my financial advisor for about fifteen years or so, though I probably frustrate him because I’m a lazy investor, a buy-and-hold kinda guy, despite his best attempts to get me going and moving money around as the markets change. But, omigosh, that takes so many decisions, Larry! Some folks who believe in astrology would say that’s because I’m a Libra which makes me indecisive. Whatever. Larry sent us a box of home-made chocolate chip cookies from San Antonio, cookies he and his wife Ginny made. Thanks so much, Larry. They’re almost gone already.

And of course, I’m still getting cards from Joan.

I better wrap this up and get it in the mail. So, what am I going to do for my anniversary, the one I mentioned a long time ago? Well, I’m going flying. An antique B-17 bomber is coming to town on a “heritage tour” and they offer flights for those who want to go up in it or the other plane on the tour, a B-24. I’ve been trying to get on one of these flights for years but have missed out over and over, either because I wasn’t in town when they came through Denver or Dallas/Ft. Worth or because they were booked up when I finally realized they were in town. This time I found out in time and have reservations on Friday afternoon to fly on the “Nine-0-Nine,” a restored B-17. I’m not sure if most of you, except for my friend Peter in Denver, would think this is cool, but I’m really looking forward to it.

Enough for now. I’ll be back to tell you about what we’re going to do with my low white counts and the plans for more chemotherapy when we know something.

Dave
dreck@prodigy.net

The Nadir

2008-02-29T21:10:00.005-06:00

Dave’s Great Adventure, Book 3
Chapter 1, Verse 6
February 28, 2008
The Nadir

When I started whining about this Kathy reminded me that I used to complain about it back when I first went through chemotherapy in 2002. I’d spend most of a week going through the infusions, then about another week recovering. I’d feel pretty crappy during all that time and we’d spend most of our time at home. And then, after I’d spent two weeks in the house and just as I was starting to feel normal again, I’d hit my nadir.

The nadir is the low point of a chemotherapy patient’s white count. I’m there now. The deal about the nadir is that when your white cell counts are extremely low, you’re also at risk for all kinds of infections from both internal and external origins. We all carry around very dangerous bacteria in and on our bodies, but generally they aren’t a really big deal because our immune systems keep them under control. We have staph in our noses, E. coli in our bowels, strep and fungi on our skin, and women have any number of very dangerous organisms in their vaginas like clostridia and pseudomonas, but it’s just not a big deal most of the time. Our immune systems are wonderfully designed to deal with these things under normal circumstances. But if the immune system is significantly weakened by something, those organisms can go wild and attack. That’s what happens to people with AIDS. The organisms that normally wouldn’t be a big deal can rise up and kill them.

This is also a time that I’m more likely to get diseases from other people, which is why Kathy watches over me so closely when we go anywhere. There is a lot of flu going around Texas right now and several people, including kids, have died of it. (If you haven’t gotten your flu shot yet, it really isn’t too late—it can help even up to April or May according to my sources.) Because of my compromised immune system we’ve been spending way too much time indoors—at home. Just to be very cautious we’ve skipped the symphony, church, and a couple of plays we had planned to go to, because I’m now one of the immunocompromised folks that could die from the flu if I were to get it. And in a crowd, you really don’t know who has it.

So I’m feeling pretty normal again, but can’t be around too many folks, I guess.

Now, Dr. Keating had given me the “no restrictions” talk regarding the chemotherapy when we met in Houston a couple of weeks ago. But that went against everything I’d been told up to that point, as I’d previously been given lots of restrictions around getting the chemo and during its aftermath, especially during the nadir. When my local doc’s nurse came out with my CBC (complete blood count) results, she told me my white cell count was pretty low, at 2,600, and that I was at risk of infection. She gave me the “fresh fruits and vegetables” talk again, the one which had caused Dr. Keating to smile at its mention. Also, my neutrophil count had dropped some more, to 1,400, lower than the low end of the normal range for neutrophils, but that’s not extremely low really. In the past I’ve had times when my neutrophils were down in the 100 range. Now that’s pretty low. In fact, just before my stem cell collection in early 2004, my neutrophil count was zero for several days and I survived. But I digress.

Medicine has been described as a science and an art. And it truly is a blend of both. In this particular situation, the science says that since my white cell counts are depressed, I’m at increased risk for infections. And that’s absolutely true. The art though is trying to decide how low is too low and what activities should be prohibited. Most folks in medicine tend to be conservative about these things, not wanting to take unnecessary risks with their patients. But others are more relaxed in their approach, not wanting to put unnecessary restrictions on their patients. It just varies depending upon your doc’s experiences and risk aversion. As an example, when my white count got down to 1,100 in the fall of 2002, my doc in Denver kept me out of the clinic and actually started me on injections of Neupogen, a white cell growth factor. But just a couple of years later, one of our nurses in the same clinic was going through chemotherapy for breast cancer and when her count got down to about 1,000, her doc didn’t think anything of it and let her keep working, bald head and all. And the Neupogen; well, it works well to stimulate the growth of neutrophils, but my docs here in Denton don’t want to use it because when it’s stimulating the growth of neutrophils, it’s also stimulating the growth of the residual bad guys too. Different places, different opinions—that’s the “art” part of medicine.

Which brings me back to the “nadir.” It’s been about two full weeks since the end of my last infusions of chemotherapy but my white count has continued to drop. That’s for a couple of reasons. Firstly, the Cytoxan has been gone since shortly after it was infused, but during its short time in my veins and marrow, it set about cutting down all the rapidly dividing cells it could find throughout my body, including white cells being newly formed. Likewise, the Fludara was targeting all the white cells it could find during the three days of infusions, so there was an immediate drop in my white count during that time. But now that the rapidly dividing cells have been “clear cut,” the white cells that were to replace my naturally and chemically dying cells aren’t in the pipeline and can’t rush into the battle to replace the ones that have been lost.

And secondly, the Rituxan and the Avastin are antibodies, as I’ve previously mentioned. They’re still hanging around, and though slowly being eliminated, they’re still doing their jobs. They won’t be totally gone until about the time for the next infusions, presently scheduled for March 10th. The Rituxan, remember, specifically seeks out and targets lymphocytes with that CD-20 antigen (the CD stands for “cluster designator” as the CLL lymphocytes grow in little clusters of identical clones in the lymph nodes) and continues to reduce their numbers.

I should have a rebound in my counts shortly, as those stem cells which weren’t killed off will be recovering and starting to make more white cells again, both of the good and bad varieties. I’ll find out how much of a rebound on Monday when I get my next CBC.

Sorry to be so didactic, but there are folks out there who crave these details. Steve, a good friend from Denver and the husband of one of my patients, said “And I always appreciate the technical descriptions along with the narrative-- it must be the engineer in me.” And Monica, also from Denver, said, “It's kind of like attending an online college course in the study of leukemia, without the exams and tuition!!” Hmm…is that good or bad? Monica and her husband Don used to bring me no-beans red Texas chili when I got sick back in 2002, and good stuff it was. It was made according to a recipe used by Don’s sister, Cindy, who tied Bobby Flay, of Food Network fame, in a televised chili cook-off not too long ago (she markets her spice mix as “Cin Chili” and it’s available at Central Markets in the DFW area and, of all places, Cosmic Chili in Bozeman, Montana, if you’d like to try her stuff...and you should!).

Speaking of didactic, I want to tell you a little about what some of the numbers I’ve been throwing around mean. I’ve mentioned that my white cell count, which includes all the varieties of white cells, was about 90,000 before we started the infusions. What that means is that in every cubic centimeter (CC) of my blood, a volume about three-eights of an inch square, there were 90,000 white cells. About 90% of those white cells were lymphocytes, so I had about 81,000 of them per CC of blood. Now, three weeks after the infusions, there are but 700 lymphocytes per CC of blood, so remarkably have the drugs sought out and specifically killed them. We’ve taken out about 97% of all my white cells, and over 99% of my lymphocytes, the great majority of which were CLL cells, but have “only” taken out about 75% of the other, normal kinds of white cells. That’s the great news. But it’s also the bad news in a way. Those normal lymphs that are being taken down…well, they make my antibodies. That’s another reason I’ll be at some risk for many months to come, even after we conclude my current round of drugs.

Meanwhile, Kathy has managed to keep me healthy with her crazy ways. I’ve told you about her wearing masks when she cooked, and spraying down the tub after she used it because she had a little cold. Well, last week I noticed a strange “scent” in the air, kind of an antiseptic smell. I tried to place it but couldn’t so asked Kathy what it was. Well, she admitted that she’d sprayed the bed down with Lysol to try to kill off the viruses she was shedding. She’s a little crazy, but, man, is she dedicated to keeping me well.

I came across a little article recently titled “Treating CLL: Optimism Not Required.” In the article it says, “Contrary to popular belief, there is no evidence that an optimistic attitude leads to a better cancer outcome. In fact, insisting on a cheery disposition when someone is struggling with a scary disease may actually do more harm than good, according to a leading psycho-oncologist.” Now, first of all, have any of you ever heard of a “psycho-oncologist?” It gives me the mental image of a guy in a white lab coat walking around the Bates Motel with a long knife in his (or her, ‘cause I’m not sexist) hand. This guy goes on to say, “The flipside of believing a smile can banish cancer is believing that a frown can cause it.”

I’m glad to hear that, because when I first found out that I had leukemia and that there was no cure, I was determined to go about my life in a way that no one would be able to tell I was sick. I was going to smile, keep up with my work, not complain, and I was going to beat the disease. Yeah, I was going to be the first! Everybody who gets cancer thinks that way, that they’re going to beat the disease even though millions of people before them, good folks with great attitudes and work ethics couldn’t.

But things didn’t work out that way. The first thing was the depression that can overwhelm you when you have found out that you’re going to die in a finite period of time. We all have an image of our life going on out before us in a path that leads to an ever-receding horizon, one we’re never going to get to. But when you get the diagnosis of cancer, especially one with no known cure, suddenly there’s an earthquake in front of you and the earth falls away, leaving you facing a cliff. And you can’t stop advancing towards it. Each day the edge of the cliff gets closer. I put my fears about this into a message to my family and friends in August of 2002.:
http://adventureswithleukemia.blogspot.com/2002/08/reality-of-leukemia-fear-and-sorrow.html

I couldn’t escape the depression. And in time, I found I couldn’t escape the effects of the disease and its treatment. I became weakened because of the disease, the drugs, and from the emotional toll of dealing with a lethal illness. But I didn’t want to wimp out and give up. I kept going on and on and on until it became dangerous for me to try to practice medicine, something I’ll talk about in another message. Now I find out, from this psycho-oncologist, that trying to keep a positive attitude wasn’t required and neither did being depressed hurt, at least in terms of progression of the disease. Sometimes it’s hard for Type A people to just give up and not be in charge of things, especially when they have no control over what’s going on anyway. But it’s been easier for me since I did just that. I gave up control of my disease to my docs and gave up my job because I couldn’t control the effects CLL was having on me. And I’m better off for having finally done so. Thanks, psycho-oncologist, for excusing my failures.

Say, I heard recently that Avastin has now been approved for use in breast cancer. And hopefully we’ll find that it works for CLL as well (though we won’t know that for some time). The more uses it gets approved for, the more the stock in its manufacturer is going to rise. And at $30,000 a dose, they may make some money. Hey, Genentech is calling to all you investors out there!

I heard from my step-brother/cousin Tom recently. He and his wife have retired to The Villages down in Florida. “Disneyland For Old Folks,” he calls it. He just checked in to brag about their weather and say that they’d been out in the car with the top down. Oh, yeah, he also said he didn’t really want to hear about how many tax dollars I’d been using up.

And our former neighbor Tom in Highlands Ranch, Colorado also checked in. He made an interesting offer. I’d mentioned that he had mowed my lawn and taken care of things for me while I was out of action with chemo in the past. Well, he offered to mow my lawn all the time if I’d move back to Colorado. Well, now. Maybe I can start up a bidding war or something. Say, how many of you folks here in Texas would match his offer and mow my lawn, and also, say, take out the garbage every week if I don’t move? Tom also sent another note with a more serious message. “I am really glad you are doing this for your posterity, this, your journal and genealogy will be a legacy for eternity. I mean that sincerely, it is a gift of love that probably won't be fully appreciated by your loved ones for some time to come, but trust me, it will be cherished and more than any other thing or inheritance that you might leave.” I agree with Tom, and I think all of us should write down something of our lives for our families and those that come later. I wish my dad had written down his tales of World War II. In fact, he told some stories so many times that we didn’t want to hear them after a while, but now he’s gone and we didn’t write anything down so the stories died with him. I guess that gives more ammunition to Bonnie who wants me to write that book (and a lot of you out there agree with her). But who would publish it and who would buy it?

Martin checked in to say he was in Austin for a marathon and was reading my letter on his phone. He and his brother Neil are techno-geeks and are always checking their Treo phones or their laptops for e-mail, sports news, or whatever. That reminds me; Martin’s overdue for his pap smear.

We also heard from Clovis and Phil, who were our hosts at their beautiful Alaska Wolfhouse B&B in Juneau a couple of times. We went there to recover from my stem cell collection in March 2004. Wow, Alaska in March with a bald head! Cool…literally. Some of you who have been around my scribblings for a while may remember Phil as the guy who threw his typewriter out a third floor window while in a college course. We related that episode to my problems adjusting to the addition of computers to our clinic in Colorado; I was known to damage a few keyboards and mice out of frustration. (See DGA Humor, March 11, 2004) They were wonderful, accommodating hosts and are doing well in retirement up in the small town of Connor, Washington. On our first to Juneau I found I was in good company at the Wolfhouse, as there were two other folks visiting at the same time, both with incurable cancers. Mary Lou had recurrent breast cancer and Judith had primary peritoneal cancer, a malignancy that looks and acts like ovarian cancer, but occurs in women who no longer have ovaries. I have found that, when faced with incurable disease, a lot of folks start taking care of items on their “bucket list,” as the list of things you always wanted to do before you died is fashionably called of late. Going to Alaska seems to be high on many folks’ list. Anyway, both Mary Lou and Judith fought and fought with incredible bravery, but both succumbed to their disease within about a year of our meeting. Mary Lou wrote about herself in verse, and I was getting Judith’s on-line journal fairly regularly. Judith was remarkably upbeat despite her dire circumstances, but I could tell by her descriptions of what was going on that she didn’t have much time left. Then the messages stopped. I guess, as doctor psycho-oncologist noted, a positive attitude, in and of itself, won’t keep you alive. If it would, these two brave women would still be writing.

I didn’t mean to end this on a downer, but I guess I will. Sorry.

Let me close by telling you that I’m already wondering if we can possibly complete all planned six cycles of the new chemotherapy. I pointed out that we’ve already destroyed 97% of my white cells. If the next round destroys another 97% of what’s left, I’m going to be left with not much of any white cells at all. Back in 2002, we stopped after four of six planned rounds of the FCR regimen (without Avastin) because my counts were very low. Well, we’re almost at those same levels already with only one cycle this time. The folks at MDA have told me on at least a couple of occasions that they wouldn’t have stopped when we did back in 2002, that they would have been more aggressive. I guess I’ll find out in the coming weeks how aggressive they want to be and how far we can take this process. Enough for now.

Stay tuned.

Mascot Dave
dreck@prodigy.net

PS: Please take a few moments to look at this link:
http://www.youtube.com/watch?v=_tIyt8oSLVs
and think what you would be saying during this talk.
(Thank you to my good friend Cesar in Miami for this wonderful message)

Honored Heroes and Small Worlds

2008-02-25T23:22:00.002-06:00

Dave’s Great Adventure, Book 3
Chapter 1, Verse 5
February 25, 2008
Honored Heroes and Small Worlds

You know, we had really never thought about going to Kauai. I didn’t even really know where it was. Yeah, it was out in Hawaii somewhere, but with all those islands, who could keep track of them? I didn’t even know how to say it. It wasn’t until we were landing at the airport in Kauai that I found it had three syllables. I thought it was pronounced sort of like “cow-WHY” but as we landed, the flight crew welcomed us to “kuh-WHY-ee.” Just like “Hawaii,” but with a “K” instead of the “H.” And a “U” instead of the “W.” Okay, and only one “I” on the end. Other than that, just like “Hawaii.”

So just what were we doing in Kauai.

I went to college at the University of Texas at El Paso. When I started classes out there in 1966 it was called Texas Western College. That year, the basketball team won the national championship when our coach played five black players against Adolph Rupp’s white guys from Kentucky and beat them. Hollywood likes these kinds of stories and made a highly fictionalized version of the story into the movie “Glory Road” a couple of years ago. Good story, but not a lot of truth in it, just like in most movies that are “based on a true story.” Texas Western College/UTEP is still the only school from Texas ever to win the national championship in basketball.

Out in El Paso I met Kathleen Doyle. She was kinda quiet and shy, like me. We hit it off pretty well after I finally got up my courage to ask her out on a date…to a basketball game. I had thought for months that she was dating a guy named “Johnny” but when I found out that she wasn’t I gathered up all the courage I could find and nervously called her one evening: “Hi, this is Dave. Would you like to go to the basketball game on Saturday? You would? Great! Bye!” Later I was able to talk to her at greater length. And as it developed, things did indeed go pretty well.

Kathy and I were married a few years later and our marriage produced three kids. We also spent a lot of time in El Paso after we graduated from college, as I trained in and worked at the Army hospital there after medical school. Our kids loved El Paso too, and ultimately all three would also go to UTEP for varying lengths of time. So now we had five UTEP alums in the family. And then two of them married UTEP alums too, so we’re kinda inbred.

We’re members of the UTEP alumni association, have been for years. When we moved from Colorado to Texas, we joined the Dallas Chapter. We had to. Our daughter was vice-president and chief “cheerleader” and organizer for the group, keeping lots of the activities going. The other family members were in the group too, and we’d often get together to watch basketball or football games, at local venues when UTEP was playing in town, or at local sports bars when they were on TV. We’d get frequent e-mail messages from the alumni group about things that were going on. One day in late 2006 we got a message from another alum named Jessica out in El Paso.

We didn’t know Jessica, but Jessica was raising money to run in a marathon in Vancouver, I believe, in memory of her mom, who had recently died of leukemia. On her web page she had pictures of her bald mom, sitting with various members of the family, shortly before her death. Her story struck a chord with me for the obvious reasons and I sent her a significant donation. A few weeks later, she e-mailed me to ask about my donation and if I had any connection with this disease, since I’d sent more than the average she’d been getting. So I told her my story about my dad having died of CLL and that I too had it too. I found out that she was a member of the Leukemia and Lymphoma Society and was running with a part of the LLS called the Team In Training. She asked if I was a member and I wasn’t. She suggested that I might want to become an “Honored Hero” with the group and I said I might, not really knowing what the heck that meant. Next thing I knew, she had contacted someone in Dallas and an application to join the LLS as an “Honored Hero” appeared in my electronic in-box. I filled it out and sent it in.

A week or so later I got a call from a young lady in the LLS who asked me if I wanted to join them as an Honored Hero. We talked it over and it sounded like an easy enough job, involving meeting with people who were working out with the teams and not requiring too much in the way of public speaking, which can still scare me, even at my age and after all I’ve been through.

What this was all about was being an image, a real-live person, for the folks in the Team In Training (TNT) to see and identify with. The TNT folks are a fund-raising and training arm of the LLS. The TNT recruits regular folks like you and me and helps them train for events while they raise money from sponsors, friends and family. The athletes train for running and walking marathons and half-marathons, 100 mile bike rides and triathlons. Many of those in training have a personal connection with the disease, with a parent, sibling, nephew or niece or friend who has been affected by the disease. But many are doing it for the training, the adventure or just to be with friends who are doing the training. In any case, the Honored Hero program takes folks like me who are or have been affected by leukemia or lymphoma and makes them a part of the teams. That way the folks doing the events can see who they’re helping with their fundraising efforts, so it won’t be just an anonymous organization that’s getting the money they work so hard to collect.

Kelly called me a few days later. She’s one of our Honored Hero coordinators and has a personal connection, as her son, Ethan, had leukemia when he was three years old. He’s now almost six years into his remission and considered a cure. When he was ill his dad ran a marathon with TNT and as he finished the race, he gathered up Ethan and carried him across the finish line, in a wonderful metaphor. The image gives me chills it’s so beautiful. Kelly now runs marathons with TNT and has done so for years. Kelly invited me to “Kickoff,” which was coming up in a few weeks, when they would start a new season with a new crew of folks training for their events. Kickoff was going to be held at one of the larger hotels in Dallas, and Kathy and I made plans to go.

I expected that I’d meet up with twenty or thirty folks who were gathered to talk about the upcoming season. Instead I was amazed to find many hundreds of people, perhaps a couple thousand or more, and what was a huge pep rally, with lots of cheering, noise and noisemakers, music pouring out of the speakers around the room and videos going on huge screens. Introductions eventually followed, and we heard inspirational talks, including one by another Honored Hero who had beaten her disease, a lymphoma of some kind, and was herself now going into training for an event. This went on for about an hour and then we broke up into smaller groups. Kathy and I joined our team, called the DFW (Dallas-Ft. Worth) Metro Team, and this was the group I had been expecting to see, a group of about sixty or so folks. I was introduced as one of the Honored Heroes, was given a T-shirt with the TNT logo on the front and “Honored Hero” on the back, and thus began my new job.

Now, I have felt from the beginning, a little uncomfortable about being called “Honored Hero.” One of my first tasks after joining TNT was to write up a little bio for the team. In it I told them about myself and about my struggles with leukemia but suggested that “Honored Hero” was way too much title for me, that I’d done nothing particularly heroic nor honorable to deserve that name. I did the things I needed to do in fighting my disease not because I was a hero of any kind, but rather because I really had no choice in the matter. On the other hand I kind of felt that the folks on the team, the ones that were working out and raising money on behalf of folks like me should be my honored heroes. I asked them just to call me their mascot. So I became probably one of the most elderly team mascots in sports history.

The team meets a couple of times a week to get training tips, to receive a little information about leukemia and lymphomas, and to train in their event. The typical meeting times are 7AM on Saturdays and 7PM on Wednesdays. I thought that if these guys and gals were doing this for me, the very least I could do was to get up early on Saturdays and go out on Wednesday evenings to be with them from time to time. Even if I couldn’t run the miles with them, I could be out there and walk while they ran, and get to know them. It’s my new job as mascot; I bring Kathy with me and we go out to be with the team once or twice a week, and we’ve been able to meet a bunch of great people by doing so.

Neil is our running coach. He’s a lawyer who teaches at SMU and has been with the LLS for years. He’s trained at least a couple dozen teams for TNT completely on his own time. He does it for no pay, and is dedicated to the team. And remember Martin? He’s Neil’s brother and is on our team as a mentor, one of several folks on the team who shepherd new trainees along as they prepare for their events.

Last summer Martin, Kelly and several other of our teammates went to Anchorage to run in the Midnight Sun Marathon (I think it was called) at the time of the solstice. They had a great time but Martin came back from Alaska with a bunch of mosquito bites on his ankles. Martin kept scratching them and they were getting worse and worse so he saw a doc while he was in San Antonio (Martin travels a lot) to see what needed to be done. The doc saw that Martin had an infection and prescribed some topical antibiotic and steroid ointments. But the next week at training, he was talking about the scabs on his ankles that wouldn’t get better, and they were spreading. Hmm…sounds like impetigo to me, I said. I offered to prescribe some systemic antibiotics for him to treat the problem and so off we went to the nearby Walgreens to get him a prescription for cephalexin, my favorite antibiotic for lots of things.

Problem was, it didn’t help. After taking the oral antibiotics for a few days without any improvement he went to see a real doc, a dermatologist, who apparently could tell from across the room that Martin’s problem was not impetigo or any kind of infection but poison ivy! Poison ivy?! And he prescribed the appropriate meds. I told Martin that was why God invented dermatologists—to take care of things simple gynecologists couldn’t figure out. But ever since then I’ve been known to the team as Martin’s gynecologist!

The TNT has a number of differing fund raising activities. It sponsors dinners, garage sales, sells TNT items, and then has a couple of major activities each year. One of them last year was a wine tasting at a local winery in Grapevine, Texas. I know that name sounds very pastoral to the non-locals, but please don’t get images of valleys with neat rows of grape vines up and down the slopes for the town of Grapevine. It’s a neat town, but is completely surrounded by interstate highways, and if fact the grapevines of the winery we went to grow right along a freeway. But the winery graciously sponsored our party and about four hundred folks paid $25 each to attend, helping our cause. At the wine tasting we also held a silent auction, selling several hundred items which had been donated to the LLS or solicited by our members. There were meals, plane and boat rides, small electronics, beauty items and a lot more. Among the items was a certificate donated by American Airlines for a three night stay in a luxury resort on Kauai, worth $1500, travel not included.

One thing Kathy and I really like to do is travel. It’s our greatest extravagance, so that particular item got our attention. We’d never been to Kauai. So I bid and bid again and eventually won the coupon, paying about $560 or something for it. What a deal! But then we got home with the coupon and I started looking up fares, and I found that it was going to cost us in the neighborhood of $2,000 to get there and back! Not such a deal, maybe. But you know, as I’ve been asked several times by my family, “What are you saving your money for?” Indeed. We scheduled the trip to Kauai for early February as you well know by now. And there we had the spectacularly good time that I’ve described to you already, but we also had one of those “small world” experiences too.

I’ve told you all about the Marriott Resort and beach club and the fact that nothing was included in the $500 a day rates, not even breakfast. So on our first full day on the island we went across the street to look for breakfast, trying to find a little local place we’d seen an ad for. Since the cruise ships that come to Kauai dock not too awfully far from the area of the Marriott Resort, there are a lot of places in the vicinity which cater to tourists, with travel agents, tour guides, souvenir shops, helicopter rides and lots of little, or not so little, restaurants. The place Kathy wanted to go to was in a small two-story cluster of buildings with a small courtyard in the center which housed a number of these tourist oriented activities. Kathy walked in, looking intently at all the signage along the walls and above the doors, searching for the place she’d read about. A man and a woman were sitting on a bench near the entry way and Kathy passed by them as she walked in. I looked at them…and looked at them. They were engrossed in a pamphlet as they sat outside a helicopter tour agency. Finally the woman looked up, saw me and said, “Dave Eckberg?”

Man, we hadn’t laid eyes on each other in many years, and had no idea whatever that they’d be there, but there were Sheri and Bill. Sheri was a long time friend and a nurse I had worked with in the OB clinic in Denver for several years. We had gone to the wedding of one of their daughters and just missed the wedding of the other, when I couldn’t attend because of my first course of chemotherapy in the summer of 2002. Sheri had moved up in the organization and left our clinic to go into the medical computer business of the company several years ago. She and Bill were in Kauai on vacation (February is a GREAT time to get out of Denver for warmer climes) and we were there because we’d bought the coupon at the silent auction. What an amazing coincidence! They had to hurry along to catch their ride to the helicopters but we made plans to meet up again later. “Later” was that evening when we joined them at an unbelievable restaurant at the water’s edge not too far from the Marriott, a place called the Beach House which has a completely unobstructed view of the Pacific Ocean to the west. From its location the patrons in the restaurant and lots of other folks too, can watch the sunset. Apparently there were lots of sun worshippers among the crowd, as a number of the people huddling along the very narrow beach were doing Tai Chi or yoga or something as they watched the sun god Ra drop behind the edge of the Pacific Ocean. Meanwhile Kathy and I and Bill and Sheri were able to take in nicely prepared local cuisine as we watched the onset of the evening. We were able to have a wonderful time together talking about all the usual things old friends want to catch up on; family, friends, work, and how they were doing with their jobs and how we were doing with retirement. Bill and I also tried in vain to see the almost mythical “green flash” at sunset but were thwarted by some distant clouds on the horizon.

So, you see, that's what we were doing in Kauai. If I hadn’t gone to UTEP I wouldn’t have married Kathy and wouldn’t have had those three kids who also went to UTEP. Then I wouldn’t have joined the UTEP Alumni group in Dallas and wouldn’t have gotten the message from Jessica, so I wouldn’t have joined the LLS and the TNT. And I wouldn’t have attended the silent auction at the wine tasting and wouldn’t have bought the coupon for the vacation in Kauai, and wouldn’t have met up with Sheri and Bill there. Is this a logical connection? Man, the drugs are already taking over the synapses that hold my brain together.

There was a box waiting for me when we got home from Kauai, a box from my friends at the TNT. They know how chilly those infusion rooms always seem to be, and how cool the fluids are that patients have put in their veins, and how cold all that makes us during our treatments. Thinking ahead, they made up a “blankie” for me with “Mascot Dave” embroidered on one corner and “Go Team” on the other. It’s a nice plush blanket and I used it to keep warm every day of my infusions and I’ll be using it for the rest of my treatments too. These guys are great and I’m fortunate to have them, and so many other good friends, on my side. Thanks bunches guys, and we’ll see you again soon.

I just got back from the doc’s office this afternoon. My white count is still dropping and it’s getting into worrisomely low territory already. I’ll tell you the details in the next installment so don’t let your subscription lapse!

Mascot Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/

Houston...we have a (minor) problem.

2008-02-21T15:53:00.001-06:00

Dave’s Great Adventure, Book 3
Chapter 1, Verse 4
February 20, 2008
Houston…we have a (minor) problem

Well, you know, the problem with chemotherapy is that it whacks your immune system and so you have to be real careful to avoid crowds and sick people. And, you know, the problem with chemotherapy is that it’s given in hospitals and clinics. And that’s where crowds OF sick people tend to congregate. Heck of a deal.

When I’m doing this stuff, Kathy always runs interference for me, handling the money, opening the doors (so I don’t touch doorknobs), steering me away from any coughing she hears, giving me the hand sanitizer before I eat and stuff like that. But we still have to sit in waiting rooms. M. D. Anderson is a very popular place, but for that perverse reason just about all the folks that are there are sick, many of them desperately so. The halls and elevators are crowded with people huddled under blankets, wearing masks, wearing knit hats over their chemically balded heads, and with tubes emerging from under their sleeves or over their collars. It makes you sad to see so many very, very ill folks. In the best of circumstances, hospitals harbor many of the worst bacteria around. Having lots of sick folks there mean that lots of bad bugs congregate in hospitals. You don’t want to be in a hospital any longer than you absolutely have to be.

So my last day of this round’s chemotherapy, on Valentine’s Day, went well, but because I was not unexpectedly feeling tired, we spent an extra night in Houston (without a massage!). But by the time we got home Kathy was sick. Nothing too serious, mind you, but she had a scratchy throat, runny nose, a little cough developing, and the usual signs of a cold coming on. She was becoming the person she tries to keep me away from.

So she bought lots of the alcohol hand stuff, got some masks, made me start using a different phone from the one she used, and even tried to move into the guest bedroom. But I wouldn’t let her. She wears masks whenever she’s preparing food, wipes down the TV remote before she hands it to me and is even spraying the tub down with Lysol after she gets out! She won’t get close to me. Man… tough love!

Meanwhile, the drugs really hit me. This weekend I was pretty much down for the count. I had the “fuzzies” bad and couldn’t read the paper. I spent most of my time horizontal, either in bed or on the couch. I expected that, but what I didn’t expect was splitting headaches. I hadn’t experienced them before, but I had been getting them each day since the Rituxan infusion last Monday, and they were getting worse each day. I went through a lot of Fioricet and Imitrex (drugs for migraine headaches) but was able to get only temporary relief. I finally broke the headaches with a combination of four drugs that I’m not going to spell out for fear that someone else might take it as “doctor-recommended.”

A few other things happened too. I’ve been slightly hoarse since about day two of the infusions, but that tends to happen after the steroids and all the fluids I get. But it just hasn’t disappeared yet. Maybe a touch of Kathy’s cold? And whereas I generally gained about 12-15 pounds with each infusion in the past (between all the steroids and fluids), and even needed special jeans for my “fat” days, this time I’ve lost about six pounds, at least partially because the miserable headaches put a damper on my appetite for several days. But I can stand to lose a few pounds.

Folks often ask about the side effects when I’m undergoing the infusions. Let me mention a couple more, one of which I don’t have. First, I’m not losing my hair this time. I may lose some with time, but the last time I did the FCR regimen in 2002 (without the Avastin) my hair thinned a bit but I didn’t go bald.

And the Zofran, the miracle drug I told you about that is so great for nausea that I was able to eat my Ruggle’s burger and follow it with crème brulee…well, it does indeed work great. It quiets the gastrointestinal system so very effectively that nausea is eliminated. But it works so well that, uh, elimination is eliminated too. Food doesn’t come up, but it doesn’t make progress toward the, the…nether aperture either. I guess when my pregnant patients, to whom I gave Zofran, complained of constipation, I blamed it on the pregnancy and Denver’s dry climate, which were certainly factors in the problem. But I’m guessing that the Zofran didn’t help at all. It’s not a problem that commonly affects guys, seemingly being more of an issue for with the gentler sex. Seems many women get it when they travel…don’t know why, but they do. Anyway, it’s not a problem I’m generally familiar with, but one that I resorted to a little milk of magnesia to take care of after I started to get pretty uncomfortable. Good old MOM.

For all my whining, though, the side effects of my chemotherapy cycles have been far less than those folks getting drugs for breast cancer, most lymphomas, and many gastrointestinal cancers. Those folks can be just deathly ill with nausea and vomiting, weakness, mouth ulcers, diarrhea, extremely depressed immune systems and white blood cell counts and so much more. I have much to be thankful for.

I went in to our local clinic on Monday to get my first post-infusion complete blood count (CBC). I was blown away to hear that my white count, which had been about 88,000 before we started, was down to 3,100! My gosh, after only one of the six planned infusions we have destroyed 97% of the white cells that had been flowing in my veins. And what is more amazing, really, is that of the 3,100 white cells left, most of them were bacteria fighters, the neutrophils. In other words, the chemotherapy had effectively targeted the bad guys but spared most of the good guys. That’s because of the Rituxan.

[WARNING: TECHNICAL STUFF FOLLOWS] Rituxan is one of a whole new category of drugs. It’s not even chemotherapy, in some ways, because it’s an antibody; a murine (or mouse) antibody, believe it or not. (Many of my friends who have followed my adventures for years have heard this before, but there are many new folks out there now whom I’m just dying to bore with the details.) It’s an antibody against what’s called the CD20 antigen, a protein that appears on the cell membrane of all CLL lymphocytes. Now, when you get a flu shot or a tetanus shot, you’re getting a bit of the foreign protein (the antigen) of the tetanus or flu and so your body produces antibodies to the germ, virus or toxin. Then, when your body encounters those things in your blood stream, the antibodies glom onto it and allow your white cells to destroy it. So that’s what Rituxan (and Avastin, too) do and why they work so well. The Rituxan antibodies coat the leukemic cells (but not the bacteria fighting neutrophils) and then my immune system destroys them. Cool!

A couple of problems present themselves, however. First, most normal lymphocytes have some, but not as much, of the CD20 antigen, too, and they may get taken down with the CLL cells. And secondly, the other drugs that are given with the Rituxan, the Fludara and Cytoxan… well, they work well, but they damage my immune system, the same immune system that’s supposed to be taking out the CLL cells after the Rituxan coats them.

Most chemotherapy works by attacking rapidly dividing cells, on the theory that cancerous cells are dividing more rapidly than normal cells. Cytoxan is a great example of that; it’s the old fashioned “bombs away” drug that clear cuts through the body, slashing and burning all rapidly dividing cells. But it also gets rapidly dividing cells in the stomach, mouth, intestines, etc. And it kills off lots of the cells from the immune system which are also trying to multiply rapidly. And Fludara is just about as bad. It’s derived from a chemical that was found in the bloodstream of the “bubble boy” who had a complete immune deficiency. He had this chemical which was destroying his white cells, and hence his immune system. They’ve synthesized it and now it’s used to kill off abnormal white cells, but it, too, takes out many of the good guys.

But by balancing the amounts of the Cytoxan, Fludara and Rituxan, they’ve found that they work very, very well together, better even than they work individually, and don’t completely destroy the patient’s immune system. But, my immune system will be compromised for many months, or even years, after we complete my therapy.
[END OF TECHNICAL STUFF]

I am very happy with our experiences at MDA. They have a very competent and extremely knowledgeable staff. Before each infusion they showed me the drug they were giving, told me the dosage and compared the name on the IV bag with my armband. And they’re quick! Since they use so much less in terms of fluids during the infusions, the infusions go by much faster. Our last day there the drugs only took 90 minutes to flow in. Not even enough time to read much of the material we’d brought with us. We brought a lot, because in the past we’d spend hours and hours getting the drugs. Didn’t need it! And because we’d been getting up (and by “we” I mean “Kathy”) at 5:30 AM (I’d make it out of bed about thirty to forty minutes later) because I had 7:15 appointments to get blood drawn, we slept through most of the procedures anyway.

Plus, the staff at MDA is finely tuned to their patient’s needs. While I was getting my infusions and couldn’t get out, staff members came around taking orders for meals, at no additional cost. And another person, likely a volunteer, came around offering hats to us and the other “soon to be bald” patients; knit caps, baseball caps and more. Another volunteer walked in one day and just asked if there was anything she could do for us. Like many of the volunteers, she had a personal connection, her husband having been treated there as well. She brought us something to drink as we hadn’t had much yet that morning.

It’s not a perfect place, but it’s good. I think they could do a better job of coordinating blood draws to minimize the number of needle sticks folks get (I got five one morning alone) and their staff varies a little in competence and diligence, as it will anywhere. One morning, when I was getting my Rituxan, my blood pressure and other “vital signs” weren’t checked for three hours, when I know they were supposed to be checked every fifteen minutes for the first couple of hours. But I was feeling okay and didn’t raise the issue with the nurse. I suppose I should have.

But we’re finished with MDA for a while. If all goes as expected we’ll get at least the next two courses of chemotherapy here in Denton, following instructions provided by Dr. Keating and his crew. I’m due back in Houston no later than May, however, for a follow-up visit and another bone marrow biopsy.

This has gotten longer that I had intended, and I haven’t gotten around the Kauai story yet. Next time…I promise. And some more feedback about this stuff too, okay?

I’m feeling much better and my appetite has returned. Our friends Bonnie and Quinn brought me some hot wings, so my post-chemo need for spicy foods has been assuaged for now. And it was a great day on Thursday with temperatures in the low 70s so I was able to sit out on the patio and enjoy the sun. Except for my wife warning me not to get too much sun. You see, I’m photosensitive while undergoing chemo and can burn more easily. Not only that, but I’m more prone to get skin cancer because I have leukemia. Kathy watches out for these things when I don’t. All in all, I’m doing very well and hope to get out of the house in the next couple of days.

That’ll do it for now. Thanks for all your messages and feedback.

Dave
dreck@prodigy.net

Lucky Number Seven

2008-02-16T21:21:00.002-06:00

Dave’s Great Adventure, Book 3
Chapter 1, Verse 3
February 16, 2008
Lucky Number Seven

You know, I didn’t really plan on being an experimental model, a “lab rat” if you will, as I was explaining to Martin recently. Martin is a friend from the Leukemia and Lymphoma Society (LLS). He’s a marathoner and also trains others to run marathons to raise money for the LLS. I’m his gynecologist.

It appears that I'm to be a guinea pig for new treatments for chronic lymphocytic leukemia. I'm not sure how I got this role, but it has come to me. I suppose someone has to be among the first to try new things or there wouldn’t be any progress in anything, would there? When I first became ill back in early 2002, there was no agreed upon “best” treatment for CLL nor any general agreement even on if or when to start treatments, since survival wasn’t generally extended even with many of the available treatments. As most of you know, my dad died after having this disease for about five years.

But I was “lucky” enough to get sick at the right time. I got sick while living in Colorado, in late February 2002 and met my oncologist, a great guy named Brian Koester, a month later. He had just read an article about some new treatments which had been tried down in Texas at a place called M. D. Anderson, and they were reporting fantastic results. The lead investigator for these studies was a doctor named Michael Keating. The experimental trials had been performed on, I think about 130 people down in Houston, and the results looked so promising that Brian said we ought to try them on me too. The new combination of drugs used Fludara (fludarabine) and Cytoxan (cyclophosphamide), which had been around for many years, with a new and unapproved (at least for its use in leukemia) drug called Rituxan (rituximab). Rituxan had been approved only for use in patients with lymphomas. This combination of drugs has come to be known as FCR.

So, Brian photocopied off the regimen that Dr. Keating and his crew had brewed up and he gave the orders to his nurses. And for the first time in Brian’s experience and for probably the first time in Denver, the FCR treatments were used. On me. And the results were just great. Within four months I was in complete remission. I was ecstatic at that, but the joy was relatively short lived, as we found the disease was slowly returning about a year later. We probably didn’t use the regimen long enough, as it turned out.

So Brian sent me to a colleague named Jeff Matous, down the street, who is a “transplanter.” We decided that while the disease was at a relatively low level we’d try to collect some of my own stem cells to use in the future when I had otherwise run out of chemotherapy options and might need a stem cell transplant. Jeff used a much higher dose of Rituxan, given several times over a couple of weeks, combined with a very large dose of the Cytoxan, to “clean out” my bone marrow before we collected a bunch of my own stem cells. One day during the process, which took us a few weeks, I asked Jeff if things were going as expected. He said, “I don’t know…I’ve never done this before.” But it did go well, and I now have seven million of my own stem cells in a freezer in Denver, awaiting the day that I might need them (the use of one’s own stem cells is a bit controversial, and in fact does not generally work as well as using a donor stem cell transplant, but it’s an option that I can consider, and is a topic for another day).

Now, six years after Brian tried Dr. Keating’s regimen and four years after Jeff tried his new combination of drugs on me, I find myself at M. D. Anderson Medical Center, the very place at which the FCR combination was perfected, and being cared for by the doc who led the group who designed it! Talk about being in the right place at the right time. Now it’s time to try something new again, and Dr. Keating is the one trying the new stuff.

I’ve told you about the new stuff, the Avastin (bevacizumab—“beh-vah-SIZZ-oo-mab”) and all of its possible side effects. I’ve even been a bit uneasy about trying it because of all I’ve read about the “severe and sometimes fatal” complications. I was talking about this with Martin, whose dad had pancreatic cancer and was treated at M. D. Anderson with Avastin. His dad developed appendicitis after his Avastin therapy and died shortly thereafter. But pancreatic cancer is an extremely aggressive tumor and survival is generally measured in a few months even in the best cases. It appears that Avastin is reasonably well tolerated by otherwise healthy folks, and it’s hoped that its addition to the FCR regimen will keep me going for a few more years. This combination has been tried on six other folks recently and so far, in the short term, they’re doing well. I’m number seven.

This is extremely expensive therapy. To me, it’s outrageously and embarrassingly expensive. The Rituxan (rituximab) alone costs several thousand dollars a dose (you might want to buy some stock in its maker, Genentech). The single four day course of therapy I’m getting, including everything, will cost in the range of $80,000 to $120,000, according to my nurses, though I haven’t seen any bills yet. And (this is an important “and”) that’s before the cost of the Avastin is added in. Right now, since this is an investigational study, the drug company is paying for the drug, which costs about $30,000 PER DOSE! (That’s another reason to invest in Genentech!) By the time I hopefully complete the six months of the study protocol it will have cost way over half a million dollars. I just find that to be incredible. Now, I’m not paying that out of MY pocket, but someone is, and in my case, it’s all of you! Between my military retirement benefits and Medicare (which I suddenly found I was going to be included in, starting in March) the taxpayers of America will be picking up my bill. Think about that on April 15th when you file your income tax return. Your tax dollars hard at work! And thank you very much.

But it seems to be working well. Before we started the therapy, Dr. Keating said, to his team, with his New Zealand accented English, “Okay, let’s get him into remission and then we’ll work on the cure!” And off we went, to the infusion room. Before I started the first day’s infusion, my white cell count was about 88,000 (remember that a normal count is somewhere between 3,000 and 10,000). Monday, on the first day of therapy, I got only the Rituxan. The infusion went well, and by the next morning, my white count was only 34,000! So the second day I received the Fludara and Cytoxan infusions and the next morning the count was 17,000.

Well, on day three I was going to receive the Avastin. It was given along with more Fludara and Cytoxan. They hung the IV bag with the Avastin in it and ran it into my vein. I felt…nothing. It could have been a placebo for all I could tell.

I was feeling a little spacey, but not sick, after the drugs so Kathy and I went out for lunch. We found a little place not too far from M. D. Anderson called Ruggles, sort of an upscale burger and sandwich shop and we each had a burger that was way too big, but tasted great. We can recommend Ruggles. I’ve never yet gotten nauseated from the infusions of the drugs I’ve had, probably because of the wonderful anti-nausea drugs that are routinely given in recent years. In Denver I was given Anzemet and “tested” it frequently. Long time readers will remember my frequent stops at Mexican food places on the way home from my infusions. At M. D. Anderson I was given Zofran, a drug I often prescribed to my pregnant patients who had intractable nausea and vomiting with their pregnancies. Both drugs work extremely well.

So, thanks at least in part to the Zofran, I was able to enjoy my burger, and Kathy surprised me with a crème brulee for dessert. When was the last time you got crème brulee at a burger place?

The next day was the last day of my infusions for this cycle. It was also February 14th. Kathy had a Valentine for me. I didn’t have one for her. Now guys, you know it’s never going to be a good day when your wife remembers a birthday, anniversary or Valentine’s Day, and you don’t; am I wrong? I felt bad about it, but Kathy was very understanding, given the circumstances. We HAVE had other things on our minds, recently (though she was still able to plan ahead and my male brain couldn’t!).

We went in for my pre-infusion labs and found that my white count was now down to 10,000. Amazing, isn’t it? We had the infusions over about 90 minutes and were done for the day. I was feeling crappy though, a feeling that had been slowly building over the four days. And the headache that started on day one, after the Rituxan really had never gone away. But these feelings are caused by the destruction of millions of white cells, and each one is pouring out its contents into my bloodstream, just as they do when they’re trying to fight off the flu or something, and that’s exactly how I felt. We went back to the motel and I slept for most of the afternoon. That night I was still achy and couldn’t sleep well, but I know it’s because things are going as they should. End of Round One.

We heard from lots of friends and family recently after I resurrected my “adventure” series. Our long time friend, Kathy, out in Hotlanta (or is it Drylanta now?) opined that even though I didn’t have the restrictions placed on me that I had in the past, maybe it would be safer to go ahead and follow the old guidelines. She said, “Although they said no restrictions, think I would go back to what I did before. NO fruits, (lots of) water, etc. Okay, maybe some SEX.” Hey, Kathy has her priorities right!

And we got a very nice message from our former neighbor, Tom, in Colorado. Tom and his wife were just fantastic folks to live next to. When I was doing my chemotherapy infusions, he’d come over and mow my lawn and take care of things for me. One time, during a round of therapy, I started feeling reasonably well, so I went in to our clinic to see a few patients. I was embarrassed when I came home to find out that Tom’s wife, April, was mowing my lawn while I was out gallivanting around!

I heard, too, from a good friend, Shara, also in Colorado. Shara was a patient of mine for many years, and famously (or notoriously) said at one point, “We need to find some time to get together outside the clinic so I can talk to you with my clothes on.”

Bonnie wrote to say that it was a good thing that things had changed in the last six or so years, and that I was getting less in the way of drugs than before. Bonnie is quite a gal. She’s a neighbor and friend, but she’s also an artist, sculptor and a writer. And, in “retirement” she has become a professional photographer. She’s also the only person I know of who has read through my whole story, from start to finish, other than my long- time friends and such relatives who have been subjected to it, piecemeal, since the beginning of this “adventure.” Bonnie said, “Like a great book, I couldn’t put it down!” Bonnie says I should write a book. No, actually Bonnie INSISTS I write a book. But, that sounds like a lot of work!

Our dear friends Lou and Joan, up in Golden, Colorado, are also staying in touch. We got daily e-cards from them during our time in Houston. That’s just so much like them. When I was out of work for about seven months back in 2002, getting and recovering from my first rounds of chemotherapy, they sent a card in the mail, every single day for the whole seven months! Get well cards, friendship cards, funny cards, etc. Really, really nice folks.

One last thing before I close this “verse.” While we were in Houston we stayed at a very nice Holiday Inn Express near the hospital, a very well-kept and modern facility. There was, in our room, a brochure. It advertised “Emergency Massage.” Yeah, “emergency massage.” “Call Veronica at 713-591-xxxx for your stress management.” You can get Therapeutic Massage in 30 minute blocks, a dollar a minute; “A magnificent blend of soothing bodywork techniques specific for your needs to help increase circulation, promote relaxation and improve sleep patterns.” Now, guys…what kind of "bodywork" techniques “specific for your needs” best increases your circulation, promotes relaxation and puts you immediately to sleep? Yeah, I thought so. (This all reminds me about what happened when we were in El Paso for our son’s wedding and I was having horrible neck and back pain. We saw that a massage therapist was on-call and so I went for a massage in the motel! If you care to, you can read all about in the entry from September 1, 2004. It had my daughter and my female friends and patients rolling with laughter.)

Enough for now. Next time I’ll tell you how we came to be in Kauai recently and how I became Martin’s gynecologist. There is actually a long and convoluted story tied into my disease that accounts for both. And I'll tell you about my blankie, too.

Dave
dreck@prodigy.net

From Paradise to Poison

2008-02-12T22:00:00.000-06:00

[Please look at and, if you care to, bookmark my journal at http://adventureswithleukemia.blogspot.com/ You can also subscribe to the updates with the “Subscribe to: Posts” at the bottom of each page so as to automatically receive any new “adventures” that I add on]

Dave’s Great Adventure, Book Three
Chapter 1, Verse 2
February 12, 2008
From Paradise to Poison

Yeah, Kathy and I went from Paradise to Poison in 2.6 days this week. We spent most of five days in Kauai last week and got home just in time to repack and get back to M. D. Anderson in Houston for the start of my chemotherapy. We were in Kauai because…well, it’s a long story and I’ll have to come back to that later.

Part I: Paradise
We left Denton for Kauai last Monday, with my doctor’s blessing. I told him that we’d cancel our previously made travel plans if he thought we ought to start the chemotherapy right away, but he insisted we go ahead with our plans. He mused that maybe we’d need an assistant to go along with us. Don’t know WHOM he could have had in mind. We had planned the trip to start the day after the Super Bowl, foolishly thinking that the Cowboys would be playing in that game. We didn’t count on the Giants beating the ‘Pokes on the third try (for non-football fans, the Cowboys beat the Giants twice during the regular season, only to have the Giants beat them in the playoffs and go on to the Super Bowl!).

We also planned on using our frequent flyer miles with United Airlines to get a first class upgrade on the very long flight to the island. So we booked with a partner airline, U. S. Airways, only to find that they wouldn’t grant us an upgrade with UA miles. Live and learn. The flight was fairly uneventful except for the takeoff after we changed planes in Phoenix. It was snowing as we were landing there, raining as we took off, and a bit rough once we got into the air. And, as we took off, bouncing around a bit, we saw and felt a sudden “FLASH-THUD.” Nothing too bad, though. Moments later the captain came on the speaker and announced “You probably noticed that we were hit by lightning back there, but everything looks good and all the instruments appear normal.” He further noted that sometimes lightning can cause pinhole burns in the fuselage, but there was no indication that our fuselage had been damaged. I guess this happens more often that we think, and generally causes no problems. The rest of the flight was uneventful and we got to Kauai on time. We gathered our luggage and headed for the rental car area. The chickens were a surprise, though. We heard a rooster crowing as we traversed the short distance to the rental car counter and I wondered why someone would have a farm near the airport.

So we claimed our car and drove the short distance to the Marriott Resort and Beach Club, a very nice place to spend time in Kauai. The resort was right on the beach, on a calm bay with gentle surf and soft sand. It was magnificently and immaculately maintained, with palm trees, multiple koi ponds, tropical flowers and bushes, grass that looked like putting greens, and marble and tile walkways. Just getting into the resort was impressive. You descended a three story escalator which takes you to the courtyard, a large 50 meter square park/garden surrounded with huge Romanesque columns that one might see around an ancient temple. Our room had an ocean view, too. It was a neat place, as well it should be. Did I mention that the place cost pretty near $500 a night?

Now, I’ve paid less than that for a month’s rent or a house payment in years past. But, it was after all, a very nice place on a very expensive island. But wouldn’t you think that for $500 a day there would be a lot included? I would have. But, think again. Want to park your car? $7 a day, unless you let the valet do it for $10 (plus a tip, of course). Want breakfast? About $10 for a continental breakfast, about $20 for a full breakfast. Internet access? A mere $13 a day. There were lots of activities you could take part in as well. Pilates was $5 a day, surfing lessons were $75, scuba lessons were $35, and so on. Bring lots of money!

But it was beautiful there, and we kept hearing those roosters crowing! It was rainy and cool when we arrived, but we wanted to see the island despite the weather. Our first full day we went to Waimea Canyon on the leeward side of Kauai. Now, Kauai has areas which average 440 inches (really!) of rain annually which makes it a wonderful place to grow things. They call their island The Garden Island. “Lush” doesn’t begin to describe the appearance. And it’s the area described in “Puff The Magic Dragon,” the song of decades ago (remember the references to “the land of honah lee” which was “by the sea“). Hanalei is a bay on the northeast part of Kauai. Cool. It has also been the setting for at least parts of several movies and TV shows, like “Jurassic Park,” “Raiders of the Lost Ark” and “Fantasy Island” (“The plane, boss, the plane!”) among many others.

Anyway, we went to Waimea Canyon. The weather was not beautiful, being intermittently rainy and windy and cool, but it was nevertheless, wonderful. The drive was up narrow, twisting roads, surrounded and enclosed by forests or jungle. We got to one of the first overlooks and had a magical moment.

We walked among several chickens (there they were again!) and reached the railing, looking at the vista before us. The wind was rushing by quickly and it was cool but not really cold. Waimea Canyon is a beautiful, smaller, red/brown /green version of the Grand Canyon and is about ten miles long. The wind was blowing bands of rain and mist through the area with the sun breaking through intermittently. We were standing in the misting rain and below us, below us (!), was a rainbow. I don’t believe I’ve ever looked down on a rainbow in all of my sixty-one years. It was a complete 180 degree rainbow, beautiful to behold. I got out my camera. The batteries were dead.

Across the canyon was a waterfall, actually a two part waterfall. A large stream emerged from the forest atop the canyon walls and began its journey to the bottom to join its friends which were flowing from other areas of the canyon walls. It fell about fifty feet or so, but was stopped by an unseen pool, a water hideaway behind the green growth along an invisible ledge. But it escaped the pool and tried again to flow to the canyon bottom. But it couldn’t. The stream dropped another fifty feet or so down the side of the reddish slopes, but then was foiled again and again in its attempt to reach its goal. The wind repeatedly whipped the white stream of water to the right, dissolving it into a faint mist. The stream couldn’t achieve its goal because of forces beyond its control, though it tried and tried. Sometimes, despite our best intentions and attempts, we can’t make things work out the way we think they should. Life’s little lessons from nature.

One more thing before I stop this too-long travelogue; we took a helicopter ride, like so many tourists. Our copter flew around the island but at one point flew, our pilot said, “into the volcano.” To us it looked like a large, deep valley. But what was wonderful about the place was that there was an incredible, uncountable number of waterfalls, in all directions. I’ve never seen so many falls in one place at the same time. It was fantastic, beautiful and stunning.

The next day we left Kauai at 11:30 PM for a long, miserable overnight flight back to Texas (which is why I wanted to be in first class seats) and got back only to have to get ready to leave again. Tired is not the way you want to start out a trip for chemotherapy.

Oh yeah, about the chickens. Just like Colorado is overrun with rabbits, and Texas is overrun with coyotes and armadillos, Kauai is overrun with chickens. The unsubstantiated rumor is that they got loose from a chicken farm during a hurricane, and now are free-range and live all over the place. They are beautiful, for chickens, with the roosters having golden mantles over brown bodies with black/green iridescent tails, and the hens are various spotted shades of brown and reddish brown. And they are just about everywhere you go on the island. Kinda like island mascots.

Part II: The Poison
My, my, my, how things have changed. Long -time readers of my journal with its descriptions of my treatments (and so many other related or completely unrelated topics) may remember some of the many restrictions and warnings that I have been given before my chemotherapy infusions in the past. (For the full stories look at the entries for July 2002). A few of them are:
--We can’t give the Rituxan until your white count is below 50,000.
--You have to avoid fresh fruits and vegetables while your white count is depressed by the chemotherapy.
--You have to drink liters of fluids and we have to infuse at least two liters of fluids after each chemotherapy infusion to flush the drugs out of you system.
--You have to take allopurinol for the duration of your chemotherapy.
--You should avoid sexual contact while your white count is low.
--Increase your intake of rich foods in order to maintain your weight.
--No dental work will be allowed during your chemotherapy.
--Et cetera.

Before we began “our” first round of chemotherapy in 2002, we certainly felt like it was a REALLY BIG DEAL. I mean, they’re putting very toxic substances into your veins which have any number of dangerous side effects. This was reinforced by our pre-chemo briefing. Kathy and I watched a thirty minute film on chemotherapy and its possible side effects and were given a bunch of pamphlets to read to make sure we knew what to look out for in terms of problems and complications, which included all the above and much more.

So, this time we met with Dr. Keating before we started our treatments here in Houston and his briefing was exactly this:

“Everything in moderation, no restrictions.” Quote and unquote.

I just couldn’t believe that, having expected another long talk about the do’s and don’ts of chemotherapy. I told him that before my earlier rounds of chemotherapy I’d been warned about eating fresh vegetables and fruits, which might be contaminated with bacteria, and that sexual contact had been proscribed during my times of very low white counts. He smiled a bit and said, “Well, was that because she’s a vegetable…or are you a fruit?” (Insert rim shot here.)

The approach to chemotherapy here is almost casual, I suppose because they do so much of it. And it’s not just in the “everything in moderation” advice. It applies to the drugs they use as well. They use a lot less, overall. You may remember that when I was first scheduled to begin my therapy in July 2002, we couldn’t use the Rituxan at first because my white cell count was 67,000. There was the fear of severe reactions if too many white cells were destroyed at one time, each of them releasing cytokines, lymphokines and histamine releasers, substances that are very useful in fighting infection by causing inflammation, but potentially dangerous if released into the blood stream in large quantities. They can cause severe low blood pressure, difficulty breathing and severe allergic type reactions (called anaphylaxis).

Well, now…. When I got here my white cell count was 88,000 (down a bit from two weeks ago) but despite that elevated count, not only were we going to give the Rituxan in the first cycle, we were going to give it as the first drug and in larger quantities than I’d had several years ago. Nobody had any reservations about it at all. And you know what? These guys in general, and Dr. Keating in particular, invented this regimen and they probably know best what works and what is safe.

And they use far lower doses of less powerful steroids in conjunction with the drugs. The steroids were the drugs I took several years ago which caused me to gain fifteen pounds or so with each infusion, and grow my little “man boobs.” This time, rather than taking the powerful steroid Decadron everyday I was getting the infusions of the various drugs, I’m taking the much less potent steroid hydrocortisone, and I’m only taking it on the days I get the Rituxan, not every day of the chemo infusions. And I’m only going to take the allopurinol for five days total, not for four months. (It’s a drug that prevent all the debris from the millions of white blood cells that are being destroyed from clogging up my kidneys.) They do add one more drug I didn’t have before, an anti-viral drug called Valtrex. This is a drug commonly used for herpes, but has activity against many other viral infections. It’s used to prevent reactivation of any latent viruses that might do me harm while I’m severely immunocompromised or weakened. I will be taking this as long as I’m undergoing the chemotherapy.

And back to the “consume mass quantities” of fluids program that previously had me strolling back and forth to the bathroom during my infusions and for the day following it, since I had been instructed to keep drinking large quantities of water for 24 hours following the completion of the infusions…. Well, whereas in Denver they infused two liter of fluids with the chemo drugs, here they put in about 250cc, about one tenth as much. And I have been given no particular instructions about forcing fluids after the completion, though I am drinking more than I usually do in the evenings.

This has gone on too long, but before I close this “verse” I’d like to tell you how my first two days of the chemotherapy have gone. The first day I had the Rituxan (which I’ll explain later). They go slowly with the infusions because of the possibilities of the reactions I mentioned earlier, so the infusion took about six hours. But the only problem I had was with the Benedryl (diphenhydramine) which I was given as a pre-med to help prevent reactions caused by the rapid dissolution of millions of leukemia cells. It made me loopy for a couple of hours, but once it wore off, I was fine, except for a bad headache. Then today, I got the more toxic drugs, Fludara and Cytoxan. They went in without any problems whatever, but within a few hours of getting “home” to our motel, I was starting to feel weak and fatigued. And that was only after the first doses. We’ll see how I’m doing after I get the next two day’s worth of drugs. Plus, tomorrow I get the Avastin, the drug that has only been used in combination with the FCR drugs in six other people. Wish me luck!

Until the next overly long verse….
Dave

Book Three, The Adventure Starts Again

2008-02-03T18:00:00.001-06:00

Dave’s Great Adventure, Book Three
Chapter 1, Verse 1
February 3, 2008
We Have A Plan!

Well, I guess we have a plan as to what to do next.

It’s been almost four full years since I had my last chemotherapy, in the Spring of 2004. That’s the time that I lost my hair, pulled the tube out of my chest and had the RSV infection, among many interesting missteps in getting the drugs at that time. Some of you long time “subscribers” to these never-ending messages may remember the trials I went through with that treatment regimen. But it has worked well. I never expected to be able to go so long between rounds of treatment, and am very glad that it has been as long as it has. I guess my “mutant” status can be credited with the slow progress of my leukemia and the length of time I’ve been able to go between infusions of poisons.

It’s been so long that Kathy and I have been able to put this dread disease out of our minds sometimes. We kinda forget about it and think that everything is normal and as it should be, and that we can live our lives like everyone else. But then I get a blood test, as I have had to do every two to three months, which shows my white count getting greater and greater and we’re reminded that everything is decidedly not normal.

My white count at the first of this year was about 17,000 or so, higher than normal (which is about 3,000 to 9,000 or so), but not too bad for a leukemic. And that was almost three years after my last infusions of Rituxan and Cytoxan. As I’ve mentioned to many of you over the last couple of years, we’ve been watching things but not treating anything because my white cell counts have not been worrisomely high, and because there STILL is no agreed upon standard as to what treatments are most appropriate or “best” for a patient with previously treated and relapsing CLL.

We’ve been talking for over a year about trying gene therapy, but I guess that’s not going to be an option. I don’t know details yet, but it looks like the protocol we had planned on trying, to “immunize” me against my own leukemic cells, isn’t panning out. Not sure about that yet, but if I get more details, I’ll pass them on. Anyway, in the last year my white count has gone up to 100,000. That’s much higher than any count I’ve ever had in the past, but still not all THAT high for a leukemic. Some patients walk around with counts of 200,000 to 300,000 or so.

But in addition to the increasing white cell count, I also now have enlarging lymph nodes, mostly under my arms, where I have a couple of one inch (2 ½ cm) nodes. I never had any of those before. But other than that, I still feel relatively normal for me. Just some lingering fatigue to remind me that I’m sick.

But at a count of 100,000 white cells, most folks agree it’s time to begin treatment of some kind. So we went back down to M. D. Anderson, Houston, to see my doc again to see what he’d recommend.

M. D. Anderson’s a great place for a person with leukemia to go, because, whereas most patients with my disease see a doc who specializes in hematology and oncology (blood diseases and all cancers), when I go to MDA, I’m seen in the Leukemia Clinic by a Leukemologist, a specialist who treats nothing but leukemias. The clinic I go to doesn’t deal with breast cancers, bowel cancers, brain tumors or anything else except leukemia. I find that amazing and reassuring. In fact, the folks down there(including my doctor there) developed the Fludara/Cytoxan/Rituxan (FCR) therapy which I originally had back in 2002, when it was hot off the press and my doc in Denver decided to give it a try with me.

Anyway, they have a lab that is open seven days a week so that their patients can get blood drawn on weekends, which is great, because if you don’t get your labs drawn on the weekend before you see your doc, you have to get up early on the day of your appointment to get them drawn. I’m getting too accustomed to sleeping in to want to get up at 6AM to get a needle poked into my arm. So I got my blood drawn on a Sunday evening after we got to Houston.

We got into the clinic right on time, of course. No, really, we got there early. When I’m with Kathy we NEVER get anywhere on time. We’re always early. Anyway, that got us into the doc’s office on time or a little early. His nurse went over all the usual questions, and then his nurse practitioner did an exam and asked more questions. She noted the enlarged lymph nodes and my greatly elevated white count. She said, “I guess we’ll need to start treatment now, but I guess it won’t be gene therapy.” I knew that already, from conversations with my doc here in Denton, but still didn’t know why.

She stepped out and shortly thereafter Dr. Keating came in. We got the now-familiar bear hugs and sat down. His first words were, “Are you ready to get back into remission?” He told me that he’d like to put me on a study protocol of the FCR (which his team had developed back in 2001/2002 time frame) plus add the new drug, Avastin, which I mentioned in the previous message. Avastin is “vascular endothelial growth factor inhibitor” or VEG-F. VEG-F is a factor in the blood that promotes the growth of blood vessels. Its inhibitor, Avastin, is used in the treatment of many malignancies because most malignant tumors require lots of new blood vessels to support their rapid and abnormal growth. By blocking the formation of all the new blood vessels to the tumors, Avastin slows tumor growth and facilitates and augments the use of other chemotherapeutic agents.

(Man, this is my first “DGA” in a few years and I’m already deep into medical stuff! Sorry.)

Anyway, though it is widely used in bowel cancers, lung cancers, pancreatic cancers, and more, it has a significant incidence of side effects and complications. I also mentioned these in my previous message, which many of you seeing this have not yet received (more about that in a bit). Among the potential complications are things like, “…serious and sometimes fatal hemorrhage…” and “serious and sometimes fatal bowel perforations have been reported…,” And more! I’ll refer you to the previous message for all the myriad details of what can go wrong. So, I was concerned, firstly, with the serious complications that have been noted, each one with an incidence of 1-2% or so. Those add up to serious numbers in a hurry when there are several of them that can happen.

And secondly, I wondered why a drug designed to inhibit the growth of abnormal blood vessels in tumors was even suspected to be of any utility in leukemia, which is not a solid tumor. Well, the answers are that, regarding the many complications, they are seen primarily in patients with the solid tumors which are eroding into lungs, bowel, etc., or who have active diverticular disease of the large colon. In these conditions there can be a lot of inflammation and if the lesions can’t heal, because the Avastin prevents the growth of blood vessels to the area, then bowel perforations and bleeding can result.

However, though leukemia is not a solid tumor, being mostly a collection of abnormal white blood cells (lymphocytes) in the marrow, spleen, liver, etc.), it turns out that for leukemic cells to survive in the body they require the presence of “nurse-like” cells in order to survive. In the absence of the nurse-like cells, the leukemic cells die within about three days. So the theory is that the Avastin will prevent blood from reaching the nurse-like cells in the marrow, spleen, etc., and thereby hasten the demise of the CLL cells gathering in these organs.

So, recently a study showed that the FCR regimen, which I mentioned above, is probably the best thing going for relapsed CLL, and that there is reason to believe that Avastin might make the results even better. You need to know, however, that this new trial combination of drugs has been tried on only six other patients so far. I’m Lucky Number Seven in the new list of patients!

Now, my doc here in Denton was not at all in favor of me doing the gene therapy, which I really wanted to do, but he is conversely very much in favor of the Avastin. “It’s a wonderful drug.” he said to me. So I have to believe that I should give it a try and hope that I don’t have any major accidents or require any surgery while I’m on the stuff, ‘cause if I do, I won’t heal very well. Remember that the Avastin, which hangs around for about three weeks after each infusion, inhibits the growth of new blood vessels, which are, of course, required for healing.

Dr. Keating feels that as well as I did with the first rounds of chemotherapy in 2002 and 2004, I should do well for several more years after this regimen of medications. And then he said that he predicted that they’d have a cure for the disease in about five years, about the time I might need more therapy. “That would be nice,” I replied. “No,” he said, “that WILL be nice.”

So, I got signed up for the new trial medication, signed the “informed consent” agreeing that I knew what I was getting into, and thought I was done.

But no. The research nurse, Susan, said I hadn’t had a bone marrow biopsy in a while and I needed one before we started. Man, I’d hoped they’d forgotten about those. They are done by drilling into your hip with a needle about the size of a ball-point pen refill, and suctioning out some marrow before going deeper to get a “core” of marrow. They aren’t fun, but I’ve had five of them and, well, have gotten used to them, I guess. In Denver, however, they would typically put in an IV with “feel good” drugs for the procedures. I had heard that at MDA they didn’t take the time for such niceties, instead depending upon local anesthetics to do the job, but that they did a good job at it.

And that turned out to be absolutely correct. The bone marrow aspiration clinic at MDA does about 70 of these procedures a day! Where I was in Denver, they did perhaps two or three daily. The folks at MDA have become very, very skilled at what they do. In fact, they don’t even have doctors doing them. They have nurses or technicians (I’m not sure yet what they were) doing them. I was a bit worried, but it turned out that the procedure itself was not our problem that day; the schedule was.

I was scheduled for 2:30 that same afternoon. As you know, we ALWAYS get to our appointments early. So, after we had lunch at MDA (they have a whole food court in the hospital, not just a typical hospital cafeteria: a burger grill, sushi, BBQ, Chinese, home cookin,’ deli sandwiches, etc.) we went to the clinic. We thought that if we got there early we just might get in for the procedure early too. So we showed up at 12:30 for our 2:30 appointment. Man, the place was packed! The chances of getting in early didn’t look good, and in fact they weren’t. I got in for the biopsy at about 5:10PM after sitting in the waiting area for almost five hours. But that’s not a problem…we’re retired and had nowhere else to go.

The biopsy was just great, if I can use that term for an invasive procedure that no one looks forward to and most folks fear. Despite the lack of any IV drugs, the biopsy was the least painful of all my biopsies. It turns out that they use lots of local anesthetic (they told me they use 10cc of the stuff) and wait until it’s working well. They did a good job. It hurt less than your average flu shot,…really!

So, we’ll be going back down there on the 11th to start Round Three of chemotherapy. If it goes well, we’ll be doing four days of infusions every four weeks for six months. However, I can get the last five infusions here in Denton at my local clinic. I have much more to tell you…but I’m sure you have read enough for now.

Speaking of having enough to read, I’m going to start doing the DGA letters in blog form this time, and have uploaded all my archives for those of you who haven’t yet been subjected to my many rambling thoughts about my disease, about death and dying, and the many humorous stories that made their way into my letters.

I’m not totally happy with the layout of the blog yet, because the entries read from bottom to top in each section, and am still working on it, but if you have absolutely nothing else to do, Books One and Two are at: http://adventureswithleukemia.blogspot.com/

You may feel free to pass this along to any family or friends that may be at all interested.

The first 20 or so entries in 2002 are e-mails I was sending to my family before I even knew I had leukemia and discuss the possibilities of what I was facing show my fear and anger at finding out what I had, and then mention the many treatment possibilities including dealing with trying to find a matching donor for me. The journal entries actually start with the entry of July 22, 2002 and record how the treatments went, the funny things that happened along the way and many depressing and deep ramblings about what it feels like when you think you’re dying. You can “subscribe,” if you’d care to, by clicking on the link at the bottom of each page. Or if you’d rather, you can bookmark the site and just check in from time to time. Note that I’ve found that when I get my recent entries sent to my own mailbox they show up (appropriately, perhaps) in my Bulk Mail or “spam” box.

That’s it for now. Much more later….

Dave

Update of the Update

2008-01-19T20:39:00.000-06:00

Hello again,

Not too long after I sent out my update, I heard back from my local doc. He had already talked with Dr. Keating at M. D. Anderson about what they thought I should do next. I didn't expect a reply so fast. I thought it would at least be next week. Anyway, they were going to discuss the two opposing plans for my next therapy, standard chemotherapy (which is not curative but can "buy" more time), or the new, unproven procedure, which has yet to cure or even really help anyone. Plan A or Plan B. Well, I wish I had been privy to the conversation they had, because when they finished their discussion they decided on neither plan. Instead, we're going to consider "Plan C!" Now, "Plan C" is yet another experimental protocol, but using some standard anti-cancer drugs in a new way. If you want the gory details, the protocol is:

http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2005-0992

Now, this protocol starts with a combination of Fludara, Cytoxan and Rituxan (or "FCR") which is the combination of drugs I was given back in 2002. It worked quite well. In fact, it worked so well, that we had to stop the regimen early because my white count went too low and I was at risk for infections. What's different about the protocol is that now they want to add a drug called Avastin to the mix to see how it works. Avastin is a monoclonal antibody (like Rituxan) but it inhibits vascular endothelial growth factor (the endothelium is the lining of the blood vessels), which causes abnormal blood vessels to grow in tumors, and accelerates the tumor's growth. Avastin has been around for a while and is used a lot, but as far a I can tell, it's just been used in solid tumors like bowel cancer, lung cancer, pancreatic cancer and kidney cancer. But, like so many anti-cancer drugs, Avastin has some potentially significant side effects:

http://www.fda.gov/cder/foi/label/2004/125085lbl.pdf

(I don't expect even one of you to read through all that stuff, but just a glance will tell you it's a serious drug)

The side effects and complications include bowel perforations, kidney damage leading to dialysis, bleeding into your lungs, severe hypertension, some rare form of brain damage, and a lot more. Wow! But I'm puzzled about why they're wanting to consider this drug in my case, and in the case of any patient with leukemia. Avastin works by controlling the growth of aberrant blood vessels in tumors. But I don't even understand, yet, why Avastin should work in leukemia, 'cause as far as I know, there aren't any aberrant blood vessels to control. Anyway, at this point I'm waiting for a call back from MDA to get an appointment, hopefully soon, to get in to discuss the new protocol and get set up for the treatments. Apparently what they'll want to do is schedule the first series of infusions down there in Houston and then I can have the next several month's infusions back here in Denton.

Stay tuned.

Dave

Update

2008-01-17T12:33:00.000-06:00

Hi everyone,

Ever since I finished my last chemo treatments in the early spring of 2004, I've been asking my docs, "What's next, and when?" And I've never gotten really good answers because, as one of my docs in Denver put it, the "best treatment" is a moving target. In other words, there is really no best treatment, just varying perceptions as what might be okay, since none of the available treatments is a actually a cure. I've also gotten varying opinions about the "when" question, because there are no hard and fast guidelines about even when a treatment should start. Survival apparently is not enhanced by early treatment, even if it results in a complete remission. Some folks treat when your white count doubles within a year; some when your platelet counts drop; others when you're feeling badly or are having night sweats. I still don't have any precise answers to any of these questions, but we're getting closer to the "when"part.

My white count is now 87,000, the highest it's ever been. Even when I started my first course of chemo back in 2002, it was "only" 65,000. (Normal is between 3,000 and about 10,000.) At the start of last year my count was about 15,000 or so. My white count,therefore, has gone up six times what is was a year ago. We haven't treated yet because I've been feeling relatively normal, but finally, my local doc thinks we should probably start something and do it within the next few weeks or a month or so.

Now, most of you know that the docs at M. D. Anderson have offered me the opportunity to take part in an experimental study that hopes to use my own immune system to attack the abnormal leukemic cells. They hope to do this by collecting my leukemic cells and treating them with viral DNA, then putting them back in me so my T-lymphocytes (the other kind; my leukemic cells are abnormal B-lymphocytes) will learn to recognize them as "foreign" and attack and kill them off. The second phase of that study, which I've been invited to join, should be starting soon, maybe just in time. So far the study has neither killed nor cured anyone, after preliminary trials on ten brave souls. My local doc has been a bit hesitant for me to take part, thinking that this cure might, indeed, be worse than my disease (people have randomly, unexpectedly died during gene therapy trials). He's thinking that we should consider more mainstream chemotherapy, like that I've already done or similar regimens. But, like my other docs, it's not clear which, if any, of these other regimens might be "best." But, he's going to call my doc in Houston and they're going to decide on what they think I ought to do. That'll be nice, 'cause for several months now I've been caught between the two schools of thought; that I should do the study regimen and that I shouldn't. Hopefully they'll talk it over and come to a conclusion that they both agree on, so we can proceed. I'm kinda wanting to do the new study, but will be a royal pain because we'll have to spend a lot of time in Houston, at our own expense, and that will also involve a lot of travel back and forth between home and Houston, about a 600 mile round trip. But, bottom line, we'll start something again within weeks, and it may or may not be the new protocol. I'll keep you posted.

Any questions?

Dave

Follow-Up at M. D. Anderson

2007-09-12T22:01:00.000-05:00

Hello all,

We got safely to and from Houston and thought I ought to give you a report on what transpired. We went down there for a consultation because my white count had about quadrupled (from 11,000 to about 45,000) and my platelets were drifting downward over the last year and my local doc wanted to know what the "big boys" were going to suggest for the next step. A mere doubling of the white count is generally an indication to start treatments. He expects to need to start more chemotherapy by the end of the year.

We got to Houston Tuesday night and checked into the Rotary House Int'l Hotel right across the street from M. D. Anderson. The place is run by Marriott but is somehow connected to Anderson, both physically, by a skywalk onto the Anderson campus, and administratively. It was a wonderful place, not at all institutional as I expected, but nevertheless geared toward the patients who stay there. One early surprise was that, though I was scheduled for blood to be drawn at 6:30 AM before my 8:30 appointment, I was asked upon checking in, if I'd like to have my blood drawn there, that evening, rather than the next morning. Given the opportunity to sleep in an extra hour and a half, I took them up on the offer. They have a blood drawing room right in the hotel, with a great waiting room, with movies, popcorn, etc. The place also has several restaurants, lounges, giftshops, etc.

Anyway, we got my blood drawn and had dinner. The room was very nice and comfortable so we slept well. The next morning we got to the clinic for our appointment (all together now!) early and checked in. Well, they had us in the exam room before time for the appointment. How often does that happen when you go see a doc, huh? When I got checked in, they had my labs ready from the night before. I was pleased to find that my white count was stable at 45,000 and that my platelets had gone up quite a bit. I was examined by the nurse practitioner and found to be basically normal other than for small but slightly enlarged lymph nodes.

So, Dr. Keating came in, gave both of us bear hugs, and we talked. He didn't think I needed treatments right now, but suggested/offered me the opportunity to get a brand new drug in the near future, one based on gene therapy. This new therapy has been tested so far on nine, that's right, nine people. It hasn't killed anyone yet. It also hasn't cured anyone, but that's 'cause it has only gone through Phase 1 of the study,where a drug's safety is studied. In Phase 2, they study the maximum effective doses. So, that's what I'll likely be doing in the coming months.

The therapy involves harvesting leukemic cells from my blood and then processing them with the gene therapy to make them look "foreign" to my immune system, and freezing them. Then, over about five months, they infuse them back into me with the hope that I will start to produce antibodies to the leukemic cells. We don't know if it will work, but, in theory, it should....

So, interesting and a little scary too. And it will involve five or six trips to Anderson with stays of about a week or so each time. But, it won't likely start before the first of the year. So far, so good. And so that's what we've been up to.

Stay tuned,

Dave

I'm A Mutant!

2006-09-13T22:20:00.001-05:00

Greetings from Denton!

Some of you know that I was referred to the famous M. D. Anderson Cancer Center in Houston this week after my white count started climbing again. It hasn't gotten very high yet (only about 10,000) but my doc wanted another opinion on what we should do and when we should do it. So, he sent me to Anderson to be seen by Dr. Michael Keating, probably one of the world's most respected and knowledgeable people as concerns leukemia. I was very pleased to be able to have the opportunity to be seen by him. We got back from there last night and I thought we ought to tell you all about it. A lot happened.

We drove down there, arrived there safely and checked in to an overpriced hotel in central downtown Houston, about 8 blocks from the Cancer Center. It didn't even have free breakfasts, parking or Internet access! Anyway, we spent most of our first evening checking out the place, driving over to the Cancer Center, finding the parking garage, and even going into the clinic building and up to the eighth floor to see where the clinic was. You can't be too prepared, you know.

I've been excited about going down there, and feel privileged to be appointed with Dr. Keating, who is world-renown for his expertise in leukemia. But I have been worried too, since every time I get treated there remain fewer options for the "next time."

So anyway, the next morning, promptly at 7:30 AM we were there. Actually (and you knew this) we were there early! But our first appointment was with the business office to make sure that our insurance was all lined up. No problem! At the last minute (last Friday morning) our insurance, TriCare, had finally approved all the necessary stuff.

My doctor's visit was to be at 8:30 so he could decide what tests I was going to have. Well, we didn't get out of the business stuff until after that, but that wasn't a problem for us. We're in no hurry, we're retired.

We got into the doctor's office at about 10AM, but first the nurse went over all our stuff, asked questions, etc. After Alfreda was finished with me, Dr. Keating's assistant, Dr. Tan, an oncology fellow came in. A "fellow" is an internist who is studying a sub-specialty, in this case, oncology. He was a nice guy, an Aussie with an accent I had a bit of trouble with, and he had a bit of trouble with my speech patterns too. But, we did eventually communicate. He went over my records, asked questions, did a physical exam, etc. During all this, Kathy was with me, sitting in a nearby chair. At some point, Dr. Tan said, "We got back your IgVh gene that you had done in Denton, and it's mutated." Kathy heard this.

Now, it's interesting that they even did this test. It didn't exist until very recently.

When I got sick 4 1/2 years ago, I was diagnosed with CLL, chronic lymphocytic leukemia. That's the same disease my dad had, and he died of it in about five years. And my white counts were rising very rapidly, which is a bad sign. But in the intervening time, they've discovered that there are about five or six different types of CLL, based on your chromosomal abnormalities. And each different sub-type seems to act differently depending on the abnormality. So, I was tested for chromosomal abnormalities in Denver, about two years ago, and was found to have normal chromosomes, which is better than some abnormalities but, curiously, not as good as one particular abnormality. But with the average longevity of patients with disease being 6 years, if you select out the folks with normal chromosomes, it's more like ten years!

Then researchers found that having a particular protein, called CD38, on your leukemia cells was a bad thing, indicating more aggressive disease. I was tested for this in Denver also and am positive for CD38. Bummer. They have also discovered a couple of other "markers" for the disease; the IgVh gene and a test called the zeta associated protein 70, or ZAP 70 test. Just recently they've also found something called a beta microglobulin. The markers can help predict how aggressive your disease is likely to be and what medications might work best, but that's still being sorted out. This is really emerging science, hot off the press.

So, since I've been in Denton we've just been watching my white counts, which have been slowly rising. My doc finally decided to send me to M. D. Anderson since there is no consensus on what the best treatments are nor when it's best to treat. Since I was feeling relatively normal, and the treatments can be hazardous, he was unwilling (I think) to make the call on what to do next.

So, when Dr. Tan was going over me and told me the result of the IgVh gene test, it having been found to be mutated. Kathy was very surprised to hear me respond with "Great!"

It turns out that, counterintuitively, if this particular gene is mutated, you do MUCH better in terms of longevity than if you have the normal gene. When I later explained this to Kathy (after Dr. Tan left the room), tears welled up in her eyes. My ZAP 70 test was negative also, which is also a very good sign. And the beta microglobulin was low, which is very good. And that CD38 test, though it is positive, they've found in the last couple of years that if the levels are low, it's not too bad. My levels are low.

It's interesting that my IgVh gene is mutated. In most men, it's not. In fact, women outnumber men eleven to one in having the mutated gene, and consequently women do much better with this disease than the average guy does, in terms of longevity. I told Kathy that it's my feminine side coming out, and that's why I'm so sensitive and romantic (can you see her eyes rolling?).

This IgVh gene stuff is certainly no guarantee of longevity, and this curious disease that I have can, itself, mutate with time, to more aggressive types, but we'll take the good news when we can get it!

So, we saw Dr. Keating. I've been reading his stuff and hearing him talk (on line) for years, and I liked what I'd seen and heard. He is famous for being a "bear-hugger!" I told Kathy about this and said that since I was seeing him for the first time I'd probably get a handshake, but maybe I'd get a hug next time. But no...he came in, I extended my hand, but he ignored it and rapidly enveloped me in a bear hug! Then he went to Kathy and hugged her too.

He's a nice guy; easy to talk to, soft spoken, knowledgeable. He ordered a few more tests and asked us to come back the next day. We did.

The next day we met with him again, got hugged again, and went over all the labs. He went over all the prognostic tests he'd ordered, said I didn't need a bone marrow biopsy at that time, and that he'd like to follow me for, oh... about twenty years! Wow!! And he said I only needed to get blood tests about every three months ("Relax, you don't need monthly tests!") and I should probably come back to see him in, oh maybe, a year or so!

He also would like to hold off on any more chemotherapy for now because they're in the process of developing what essentially is a vaccine against a patient's specific leukemia, so that your own immune system can destroy the gremlins! If the immune system is damaged by chemotherapy, then the new method of going after the bad guys won't work as well. He said it'll work much better than the "bombs away" approach of old style chemotherapy, which destroys pretty much everything in it's path.

So, after planning for my demise in the next few years, it looks like I may be able to live long enough to spend some of my retirement savings. We'll see how this goes. It's just an amazing turn of events that I'm happy to share with you.

So, I'm happy to tell you that I'm a mutant...though several of you have suspected this for many years!

Thanks to all of you for your constant support and your prayers. Please pass this wonderful news on to your prayer groups for me! I'll keep in touch with you as things develop, though I don't expect much to happen anytime soon.

Until later,

Dave

German Roads, Remission and Leaky Heart Valves!

2004-10-07T23:47:00.001-05:00

Dave’s Great Adventure, Book 2
Postscript 5
October 7, 2004
Around every curve….

Well, we made it to Germany and back. And we did well, never got sick, and though we, and especially I, were/was tired a lot, we had, as expected, a wonderful time. It had been almost three years since our last trip to Germany. I had almost forgotten how much I love that country. In some ways, it is, to me, like a huge theme park, like being in a mega-Disney World. I love just about everything about it. I love the little towns, I love the food, I love the sounds of tires and wheels on cobblestones, I love the old half-timbered (commonly called Tudor style in America) buildings which date back many hundreds of years, I love the smells of the little towns in the mornings, where one can smell hardwood burning in the cook stoves, I love the little non-chain stores, I love the language, I love the roads….

I really love the roads, but I’ll bet you already have the wrong idea. Truly, I love the autobahns, as you’re probably thinking. They are incredibly well engineered, are wide, and are multi-laned, and there are long stretches which have no speed limits whatever. I drove fast on occasions during this trip, but I probably did no more than 110mph (about 180kph). Some of you who haven’t been to Germany may think that is fast, but when I lived in Germany and drove Porsches and BMWs, I routinely drove 125-140mph on a daily basis. Hey, roads are made to get you places quickly. Cars are designed to do the same.

But I like all the roads. The autobahns are the “A” roads, but they have great “B” roads, which are the federal roads, like Highway 66, and they have “C” roads, which are the state roads. At this level, the roads are getting narrower and more curving and twisty. But then there’s the local county roads. I’ve come to love them almost as much, or maybe a little more than the autobahns. I have been known to go out of my way to take an indirect route from one town to the next, just to be able to drive these little county roads.

The roads I’m talking about are but one broad lane wide, with absolutely no shoulders, and not even a center line. They are never straight. The edges of the road are carefully painted with white stripes to let you know, with certainty, where the edge is. When you meet oncoming traffic, you’d best be on the white line or your mirrors may kiss each other. Trucks don’t drive these roads, so narrow are they. These roads are routinely very winding and follow the topography, not cutting straight through hills and slopes as more modern roads do. They follow paths laid out centuries ago by animals, knights and stage coaches. They tend to be lined by heavy growth of bushes and trees, and the trees frequently meet overhead so that you have the impression of driving through a brushy green tunnel. There are leaves on the road that fly up behind you. On the uphill sides of these meandering roads the bank of the hills are usually reinforced with old red sandstone blocks, which are green with the moss that grows down their sides. The foliage opens up as you approach each ancient village, as the towns on these roads tend to be old indeed. And as you leave one town, you can usually see the red tiled roofs of the next village just a few kilometers further down the road. Entering again the green tunnel, you never can see too far ahead. The twists of the road are such that as you round one curve in the road, you are approaching another curve with more surprises in store. Wonderful.

So we got to Germany safely, but very tired. That was to be expected, even flying in those wonderful business class seats. Everyone suffers from jet lag when you fly to Europe. We checked into a 500 year-old hotel in Miltenberg, a place we’ve stayed many times, and spent a few days there to rest up and get used to the time change. I’ll probably describe the trip itself in some sort of DGA Travelogue for anyone interested, so I’ll not go into too much detail here.

On the third day of our trip we checked out and headed to Heidelberg. It also is a favorite town, and is a place I lived with my family in the 1950s when I was a naughty little boy. But now, our friends the Bakers live there. We’ve known each other for a couple of decades, since our days in El Paso in the ‘80s. Brian is a doc at the American hospital there, and our plan was for him to order a blood test for me, to make sure that my white count wasn’t falling any further. I had promised my doc here in town that I would do that before he let me go on the trip. (What we would have done if I was actually getting critically ill during the trip is a matter of conjecture)

But, we were able to get me entered into the local computer system which enabled Brian to order the complete blood count. It was still “critically low” but no worse that when we left Denver. Since I was still feeling well, we continued the trip and I didn’t feel the need to bother my doc back here in Denver with the news.

Staying with the Bakers is always a wonderful experience that I wish all of you could experience. Hey, maybe I could invite ALL of you over to their house for dinner some night! They are wonderful hosts and feed you very, very well. I’ll tell you more about that in the travelogue to follow sometime soon. We were able to catch up on current events and spend a little time in downtown Heidelberg doing some Christmas shopping.

Our next stop was Dettenheim, where the granddaughter of the poor woman who had to take care of me when I was the previously mentioned naughty little boy in the 1950s, now lives. Marta Galla was my nanny. She was a jewel of a person and just a lot of fun to be around. Her daughters also helped care for my siblings and me. Marta unfortunately died of a sarcoma a few years ago, but we have been able to keep in touch with her family. Her granddaughter, Claudia (who had a baby just about eleven months ago) arranged to have the whole Galla clan over for dinner so we could see everyone again. She and husband Michael are very nice folks, and have seen more of America’s national parks than we have. Her family brought along a couple of wonderful homemade German pastries, just like Marta always had for me when I visited her; a cheesecake and a plum kuchen, with every slice of plum laid out perfectly on the pastry base.

It was just wonderful to see everyone again, but I was somewhat embarrassed at how much German I had forgotten. I haven’t spoken much German in years, and no longer can think in German. Therefore, my German was halting at best. But, they spoke some English, and we got along well.

We continued on from Dettenheim to visit an aircraft museum, a medieval copper mine, a Celtic ring fort, the oldest town in Germany, Trier, which was founded by the Romans, and then we continued up the Moselle Valley. The trip was wonderful every day, and despite the many years we lived in Germany, and despite the many times we have been back to visit, we always find new things to see and enjoy.

We got back to town on a Monday afternoon, September 27th. Our plane was diverted around some nasty looking thunderstorms that we could see off to the west as we were coming back into Denver. But we landed safely and retrieved our luggage. As we approached Highlands Ranch it started to rain. Then, when we got into Highlands Ranch, I said to Kathy, “Hey, look at the snow on the ground!” There was white stuff all over the grass and the roads as we drove closer and closer to home. But she replied, “That can’t be snow, it’s 52 degrees (about 12C).” And indeed, the car thermometer said it was too warm to be snow. Only then did we notice that the trees were shredded and there were leaves all over the streets. HAIL!! We had just missed a big hail storm. Home was just a few blocks away. There were literally drifts of hail around the house and lots of pieces of broken shingles. Great! But the house was otherwise intact with no broken windows.

We couldn’t sleep much that night since now we were jet lagging again But we had to get some sleep, because the next morning I had another blood test and bone marrow biopsy scheduled. I also had an echocardiogram set up as a follow-up to the workup my internist was doing to look for a cause for my unrelenting fatigue. Getting up for the tests wasn’t a problem, because when you’ve just returned from Europe, your body not too gently awakens you at about 2AM. And you cannot will yourself back to sleep.

We got up in plenty of time and got through the tests without incident. The bone marrow biopsy hurt again, as usual, but they really aren’t intolerable. I don’t fear them anymore. Kathy and I even had Mexican food at El Tejado between the two tests. I was anxious to see what my blood tests and biopsy results showed so the next day I went to work and got into the computer to see what I could find out. The only result that was back was my blood test, which was completely normal. My white count, which had been “critically low” for weeks, was now completely normal!

“Now ain’t that the sh*ts!” as my step-dad might say. With this result, we didn’t even need to have done the bone marrow biopsy at all! After having been “critically low for weeks, suddenly my white cell count was back to normal. Who can explain these things?

A couple of days later I checked the computer again to see if the biopsy was back. It was, and it too, was completely normal. I’m back to where I was in December 2002 with normal bone marrow that has no detectable traces of leukemia, even with very sensitive tests! I’m not as ecstatic about these results as I was last time, however. Then I thought it was some kind of miracle, that maybe I had been, against all odds, cured. Now I know better, and I know that it is likely to come back again, but we just don’t know when. I have to be very grateful, however, that the treatments work so well, and that my particular strain of the disease seems to be very sensitive to the drugs we’re using. The fact that so many of my friends are praying for me has to be having a great effect on all this as well.

But just like those wonderful German county roads, around every curve is another curve and more unexpected surprises. After looking at the bone marrow results, I looked to see if my echocardiogram had been read. It had. The results said, in brief: “…moderate to severe mitral regurgitation with an atrial septal aneurysm with a patent foramen ovale or atrial septal defect, and mild tricuspid regurgitation…needs further evaluation depending upon whether or not he’s a surgical candidate.” And there was more, about mild myxomatous degeneration, leaky aortic valve, and stuff like that. For you non-medical types who might be reading this, it says my heart valves are leaking badly and I might need heart surgery.

Man, I didn’t see that coming. I’ve been feeling tired for months now, but blamed it on the leukemia, the chemotherapy, the depression, or a combination of these things. I’ve had a little mitral valve prolapse (the strongest of the heart valves, on the left side of then heart where the pumping of blood to the body takes place) for years, even with a little regurgitation (blood leaking past the valve when the heart pumps) for a while, but it never has been a problem. But I guess I should have expected it. My mom had the same problem and ended up having her valve replaced when she was about 77 years old. Unfortunately, they waited until she was in heart failure before they did the surgery and she had a very difficult time; she almost didn’t survive the surgery. If I need to have the surgery, I suppose I’d rather get it done sooner rather than later. I need to plan any surgery, and recovery too, around my other main attraction, the leukemia, as I have to be in a prolonged remission to be able to have the surgery. Also, if I’m going to retire in the next year or so, I’d like to get the surgery done before I leave this place rather than going someplace new and looking for a doc to open my heart!

This is ironic. My dad had multiple diseases; diabetes, gout, hypertension and leukemia. I got his leukemia. My mom has always been pretty healthy other than needing her mitral valve replaced a few years ago. And she gave me her bad mitral valve. Actually, when I was talking to her about this she said she didn’t give me the bad mitral valve, rather I “took it.”

Last month I celebrated my birthday, while we were in the Moselle Valley, near Cochem. Kathy gave me some great cards and our German friends in Dettenheim had given me several gifts as well (it’s an interesting and curious thing to note that the word “gift” in German means “poison”). We stopped at a small shop and had tasty kuchen for a midafternoon snack and wished me a happy birthday as we finished touring a local museum. This was my third birthday to celebrate after having gotten my diagnosis of leukemia, and I’m currently doing well (if one doesn’t consider the need for heart surgery). I have to think that I might exceed that “six year average longevity” that I was quoted three years ago, three long years that seems decades ago now. My bone marrow is currently completely normal, so I’m back to square one, as it were.

So that’s all our news. I’ve written plenty for this edition. I’ll write again, perhaps in the format of the previously mentioned travelogue for those of you who might be interested. I’ll also go over some of the many comments I received about my “poodle cut” hair and reactions to my visit with the massage therapist!

Until then,

Dave

“Those who pray for an uneventful journey have missed the purpose of the trip.” --Unknown

"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well - preserved body, but rather to skid in sideways, champagne in one hand - strawberries in the other, body thoroughly used up, totally worn out and screaming, "WOO HOO - What a Ride!" --Unknown

Off to Germany--A Very Brief Update

2004-09-12T09:00:00.000-05:00

Dave's Great Adventure, Book 2
Postscript 4
September 12, 2004
We're off!

I wanted to send out a brief message to all my friends to let all you know that we're going to be able to go to Germany despite my white counts being low. I was afraid we would have to cancel all our reservations.

I repeated my blood counts again after my last message and found that my white cell count, and especially the neutrophil counts, had dropped yet again. I discussed this with my doc, and he said we could go on the trip, but that he wants to do another bone marrow biopsy was soon as I get back. And, he gave me a bottle of new and improved antibiotics, a kind I'd not heard of, just in case I were to get ill during the trip.Has anyone out there heard of moxifloxacin? I guess they're pretty powerful.

On this trip Kathy will be keeping me as far as possible from crowds, sick folks, door knobs and coins. She's just great at protecting me from the bad things out there. Being on an airplane is a worry, of course, but we won't be back in steerage. Since we'll be in business class, there will be a lot of room between us and the people around us.And, I have a whole pack of masks I can put on if we detect any danger nearby. Wish us luck!

And, I'm to get another blood count during our trip. One of the first places we'll be going is not too far from Heidelberg and I'm going to stop in at the American military hospital there to get a count done.One of our friends, Dr. Brian Baker, works there part time and is going to help arrange this before we go on to their home. I delivered Brian and his wife Marcia's first child a long time ago. And, do you know that to this day they blame ME for all their child's problems, since I was the first person to lay hands on him. Now is that fair? It's been a couple of decades, after all!

It's a little worrisome being so far from home with a low white cell count and therefore a compromised immune system, but if we have any problems, I can go to the military hospitals in either Heidelberg or Landstuhl, both of which my father worked in years ago when he was in the Army. It's nice to have that care available while we're so far from home.

And so, off we go. We'll be in touch when we get back, probably after we get the bone marrow results back.

Until then,

Dave

Depression,Curly Hair and the Massage Therapist!

2004-09-01T23:32:00.000-05:00

Dave’s Great Adventure, Book Two
Postscript 3
September 1, 2004
No news is good news.

We’ve had a wonderfully mild spring, summer and early fall here in the Rocky Mountain west. It’s generally been cool (too cool sometimes, like when we were wearing sweatshirts in the house in July, because the heat had been turned off) and we’ve had more moisture than the last several years. The reservoirs are filling up a bit, the bureaucrats are dropping watering restrictions, and we’ve only had to use the sprinklers a few times the whole summer. And, even though it’s technically still summer, in the Rockies it is already early fall. We’re getting snow in the mountains, and it will be here soon. Our first September here it was 90 degrees one day and then we had ten inches of snow the next. Crazy!

I’ve been getting occasional inquiries about my health from friends and family, since it’s now been about five months since I distributed any of my stories. It is rather unlike me to be silent for so long. But there are two reasons for this extended period of silence.
First, there has been very little to report. I have been getting blood tests monthly, and they have been relatively normal, with no immediate evidence of return of the “bad guys.” In fact, if anything, my white count is unusually low, which worries me about the coming flu season. I wonder if it’ll be okay for me to be in a clinic where sick folks come to cough and throw up, when my white count, and therefore my immunity, may not be as good as they should be.

I’ve been doing well, overall. My hair has returned (more about that later) and I’m still working three to four days a week. But I continue to be tired most days, almost lethargic at times. I’m in the middle of a workup by my internist to see if anything else is going on. I’m going to do another cardiac stress test in a few weeks, and will have an echocardiogram of my heart as well.

The other, and probably the main reason I haven’t written sooner, is because of my medications. Now, I’ve been depressed to some extent ever since I found I had leukemia. I’ve had good days, and I’ve had some very bad days. But in general, I’ve been depressed. You kind folks know that; you’ve been exposed to my stories for a couple of years now and the depression is, at times, hard to miss. I’ve been encouraged by friends, family and colleagues to consider antidepressant medications for many months, but I resisted. I felt I should be able to battle through this with my own inner strengths.

Finally, last April, I think it was, I asked my internist if he’d give me some drugs, Prozac, in particular. I was feeling so slow, tired and sad, that I just wanted something to give me a bit of a lift. I figured Prozac might do it. So I started on it. And almost immediately, it seems, my desire to write went away. I was reminded of the story I told you about, probably last March, about the doctor who had hypergraphia, an overwhelming desire to write. She mentioned in her story that all the depressives in her support group were keeping journals. Well, it seems that I was too. Of course, you all are part of this journal. But as soon as I started the Prozac, I had no desire to write. I was thinking of things that I wanted to write down, and really have been thinking of getting out this update for months, but couldn’t find the energy or interest in sitting down at the keyboard to do it.

About six weeks ago, I decided that the medication really didn’t seem to be helping me with my energy levels or initiative. I just felt “flat” most of the time. So, I started weaning myself off the Prozac. Sure enough, my desire to write stuff down returned almost immediately, just in time for me to write some ill-advised political commentary to my family and some friends. Well, I went back on for a while, but am now weaning myself off again. We’ll see how I do.

Now, the last time I wrote to you kind folks it was in April, I believe, and I was completely bald. I even included pictures for those of you who can get them. If fact, there were three bald heads in the family, as our two sons also shaved their heads at the same time. Well, my hair has come in very thick in the last four months, and it is extremely curly. I’ve never had curly hair before, it always having been very fine and straight. But now I look like a poodle. I really can’t do anything with it. I wash it, try to comb it, but mostly I just dry it with a towel after my bath and it goes, “Sproing” and does whatever it wants to do. Kathy loves playing with my little curls! People tell me they’d pay a lot of money for curls like mine. I tell them that Kaiser paid $60,000 for those curls. They didn’t come cheap. Some folks say that my hair may straighten out to what it used to be like in a year or two, but whatever happens is okay. The hair is the least of my worries. I’ll try to remember to attach a picture when I send this out. I have a haircut scheduled for this weekend. I have no idea at all what to tell my barber about how I want my hair cut!

It’s now been two and a half years since I was diagnosed with leukemia, at which time my doc told me the average longevity was about six years from diagnosis. That, in theory anyway, would leave me with about three and half more years to go before the “terminal event.” But there’s cause for optimism. Folks with my disease have varying life spans, from a few months to a couple of decades or more. Those unfortunate folks who have very aggressive disease and die within a couple of years bring down the “average” life expectancy. So, having survived the first couple of years, relatively intact, I have to think that maybe I’m going to fall in the somewhat longer-lived group of patients. Of course, I don’t want to get too hopeful too soon, but, so far, so good.

Kathy and I have some great news to report to you. Three weeks ago we went to El Paso, Texas to attend the wedding of our son, Jon, to Natalie Campos, on August 7th. We had a wonderful time with them and many of our family members who were able to be there with us. It was great meeting Natalie’s family as well. They are just real nice folks. The nuptial couple celebrated their honeymoon in Paris and reportedly had a very interesting and culturally enlightening experience, when they weren’t succumbing to jet lag.

And just last week, Kathy and I celebrated our 35th wedding anniversary. Our kids treated us to a first class dinner at a local bistro. They even remembered to order us a vase of white daisies, like the ones in Kathy’s wedding bouquet so many years ago. I gave her a diamond pendant for having tolerated me for the last three and half decades. She gave me a cool high-power eyepiece for my telescope.

And while I’m mentioning such things, I should also mention that my step-dad, Lloyd Lee, celebrated his 90th birthday last June. We were able to go to Iowa to help mark the event which attracted over a hundred of his friends and relatives. Lloyd is still going strong and golfs most weeks during the summer.

I had a very interesting experience while we were in El Paso for the wedding! I had been having back spasms for a couple of weeks, that were waking me at night in pain. Nothing I could do in terms of stretching or exercising was making a difference in the way my back and upper neck felt. When we checked into the hotel in El Paso, Kathy noticed that they advertised the fact that they had a registered massage therapist “on site.” Kathy asked if I thought a massage would help. I was willing to try anything, so bothersome was the pain and interrupted sleep. So I made an appointment.

But then I began to get nervous. I’d never had a massage before. What was going to happen? Would the therapist be a guy or a gal, would I be embarrassed, would this be a legitimate massage or one of those kinds of things where they offer “special services.” “Would you go with me?” I asked Kathy. “Are you serious?” she answered, telling me how she felt about going along.

At 2:00, the phone rang. It was my therapist, waiting for me in the lobby. I went to meet her. She was Martina, a German lady about 35 years old, from Flensburg in northern Germany. “Good,” I thought, “I’ll have something to talk about.” She took me up to the massage room. I expected it to be rather clinical, with one of those massage chairs that I could sit in and bend over on, so she could work on my back. Wrong! It was about ten by eight feet, dark, with scented candles, Enya on the CD player, lacy curtains along the walls and a padded table in the middle of the room. Yikes!

Martina asked me what problems I was having and I told her that I was having the aforementioned back and neck pains. She actually took a short medical history and then asked me to get ready. I took off my shirt. I figured, she’s going to work on my back, right?

“Would you be uncomfortable taking all your clothes off,” she asked. “Uhh, yeah,” I answered. “Would you do it anyway,” she then asked, rather commandingly. “Uhh… okay,” I replied. She stepped out so I could undress and cover with a small towel. I took everything off except my underwear. I figured that, she’s going to work on my back. It should be okay to leave my underwear on, right? I covered my middle with the towel and lay down on my back, as she had told me.

Martina came back in and started to work. She started on my scalp, then went to my face, my chest, my upper arms. “When the heck is she going to get to my back,” I wondered. Then she went down to my feet, working up to my ankles, my calves and then my inner thighs, getting awfully close to Mr. Happy! Yikes again!!!

But then she asked me to roll over on my stomach. As I did, she saw that I had left my underwear on. “You naughty boy, you still have on your undies,” she said. “Uhh, yeah, uhh… I didn’t think you’d want me to take them off too, did you?” I pleaded. “Well, would you mind taking them off?” she again asked. She said she wouldn’t look.

I struggled to stay under the little white towel while trying to slip my underwear down. It was impossible to stay covered, but I managed to get them off.

(As an aside, while telling our daughter about this incident, she was beside herself with laughter about me, who sees naked women everyday in my work, being so shy about getting naked in front a woman.)

So, I got turned over and more or less covered again, and Martina went back to work. She started at my feet and worked up again, eventually (thank God!) getting to my back. I was glad she got away from my thighs. She worked me over, found all the sore spots, and stretched the sore area. She did a good job and eventually, it felt good, but unfortunately, it didn’t last. I was sore again by the next day.

Which brings me to the next part of the story. I was having so much pain, and was having tingling going down my left arm, so I decided to see a chiropractor. Now, even though I am an osteopath, and have training in manipulation (more commonly known as “bone cracking”) I have been leery of chiropractors because of things I hear from patients occasionally. Like getting “liver purges,” or high colonics, or multiple expensive x-rays, etc. But my health care organization, Kaiser Permanente, has a couple of chiropractors on staff. I figured they should be legitimate, so I gave them a try. And I have to say that I was very pleasantly surprised. After two treatments my problem was 95% gone. I guess I’ll be going back when I have these kinds of problems.

Kathy and I are in the very preliminary stages of planning a move to Texas, where all the kids live. We’re thinking we might move around the end of next year, but I’m trying to plan any move around my health, and would like to get through my next relapse and recovery before we move. Of course, when that might be is completely unpredictable, but will likely happen within the next year or so. So we’re starting to check out retirement communities and health care facilities in Texas, plus the health insurance coverage that we’ll have when we get there, trying to make sure it’ll be adequate.

Knowing that we’ll be leaving Colorado in the fairly near future, we’re also taking short trips around the state to many of the wonderful places we’ve been hearing about but haven’t been to see in person. Over the last couple of years I’ve taken Kathy to Antarctica, Alaska, Mexico and lots of other places, but we haven’t spent enough time closer to home. So we’ve been up to Steamboat Springs, down to Durango, into the Mesa Verde National Park to see the Indian ruins, into the ghost town of Gothic, to the rim of the Black Canyon of the Gunnison, and lots of other smaller out of the way places. This state really has a tremendous number of things to see. And we’re going to try to get to as many of them as we can in the time we have left here.

But of course, we’re not going to go just to places in Colorado. We haven’t visited our friends and relatives in Germany in quite a while now. We’ve been collecting frequent flyer miles for a couple of years, and decided to cash them in on a trip to Germany later this month, if my doc will let me go. We are supposed to leave on September 13th and will be there for a couple of weeks. We’re flying business class! Thanks to all those frequent flyer miles. I couldn’t afford to pay for business class for an overseas trip.

Speaking of my doc letting me go, while I’ve been putting this together over the last couple of days there’s been an interesting development in my condition. I had a blood count done last week, and it came back with a critically low white cell count, the lowest it’s been since I was actually undergoing chemotherapy. And I haven’t had any chemotherapy in about six months. A couple of years ago, my white count dropped to 1,000 with a neutrophil (remember the bacteria fighters?) of only 100 during my first round of drugs (normal is about 3,500 to about 10,000 or so). Well, at the moment, my white count is only 1,700 with 400 neutrophils. That’s very low indeed. I’m to repeat the count (for the third time in a week) and if it doesn’t go up significantly, my doc wants to “marrow” me, in other words, do another bone marrow biopsy. Oh boy!

So, it’s a good news/bad news story…. The good news is that at least my white count isn’t going too fast. But the bad news is, my white count isn’t going up too fast!

So, just in time for this issue of the never-ending DGA, there is, in fact, some news. I’ll keep you updated, of course.

That’s all the news that’s fit to print, at least for now. Until later….

Dave

“Life is like wrestling a gorilla; you don’t stop when you get tired, you stop when the gorilla gets tired.” --from my brother-in-law and good buddy, Ray, up in Montana.

Hair Loss, Alaska, Drugs and The Best Time To Die.

2004-04-02T23:22:00.000-06:00

Dave’s Great Adventure, Book Two
Postscript 2
April 2, 2004
Just some follow-up

My last letter, my “postscript,” generated a number of queries about several things, things which I thought I’d address in a follow-up postscript, if you don’t mind. A lot of folks had questions or comments about similar things which I hadn’t mentioned. I really had intended to mention a few more things in that last letter, but I thought it was getting to be too long, so I didn’t. So, now you get more stuff, even though I don’t really have any new “stuff“ for you.

I had questions about my hair, or lack of it, the patterns of loss, and a couple of requests for pictures. I’ll attach a couple of pictures at the end of this letter. The hair loss started several weeks ago, as I’d previously mentioned. I got my head shaved about two and a half weeks ago, when hair began falling out by the “handsful” (spellchecker doesn’t like that word, but I’m SURE it’s right) and I began fearing I would soon look like I had mange or something. I then shaved my head with a razor, as the stubble kept falling out and going down my neck. That didn’t solve the problem, however. The stubs of the hair shafts still continued to fall out by the hundreds, mostly after the morning bath, for some reason. Every little hair shaft was complete with a tiny little bulbous end, the root which was coming out with the hair shaft.

Meanwhile, other body hair was falling out, but not nearly so dramatically. The faster the hair grows, the more it’s affected by chemotherapy. So, hair like my eyebrows and eyelashes weren’t affected much at all, since they are very slow growing, and so they still seem to be pretty much normal. The same can be said for the hair on my arms and legs. Now, the hair in my armpits and, uh, (ahem) lower areas has thinned quite a bit, but is not entirely absent. I think that if I’d had multiple doses of Cytoxan, as do many cancer patients, I would have eventually lost every bit of body hair.

One place that my hair seemingly hasn’t been affected at all is in my ears! The damned ear hair continues to grow merrily as the rest of my body sheds. Is God playing a joke on me?

It has now been exactly a month since I received the single dose of Cytoxan which was responsible for this hair loss phenomenon. My head has all but stopped shedding at this point and I am seeing the first little wisps of pale, downy, new hair growth. One has to look very closely, but it is there. Meanwhile, my beard is showing signs of renewed life. I have only been shaving every several days, but I do have a very fine stubble after that length of time. I have about one pale bristle for about every square half inch of my cheeks. My chin, for some reason, remains as soft as a baby’s butt.

For whatever reason, I really never got “the fuzzies” with this last treatment. I have to guess that was because I only got one, intense dose, and not several doses over several days, repeated every month. The only thing that I did that was weird after this last treatment happened the week after the Cytoxan. I was sitting at the dining room table. looking at old photos and labeling them. I was developing a headache and decided I needed to go upstairs to get some medication before it got too bad. So, I went upstairs, went to where the medicines are, but inexplicably picked up the watering can, mixed up some Miracle Grow in it, watered all the plants upstairs with the appropriate mixture, using several watering cans full of the mixture and then returned downstairs. When I sat down, I thought, “Man, I’ve got an awful headache.” Chemo brain!

I got a couple of messages from some friends and a cousin up in Iowa about my mention of giving my excess medications away, to be used for folks who couldn’t afford these same medications. In Iowa City, at the University hospital, a couple of nurses have been recently fired for using left-over medications that some patients didn't need, and providing them to patients who could not afford them, much like I did, apparently. There has been quite a row and lots of letters to the editor in the local papers over the firing of these nurses who were just trying to help poor people.

Now, in my last letter I did mention that I asked the Rocky Mountain Cancer Center if they could use the drugs, and if it was legal for them to take them. I’m honestly not sure that it was technically legal for them to take these meds, but I didn’t ask too many questions as I want them to get used. However, I’m not a pharmacist, and so I can’t legally dispense drugs. And the person I gave them to is not a doctor, and so can’t legally prescribe or dispense the drugs. And, the drugs have been out of a pharmacy, so if I had some evil intent, I could potentially have adulterated them and made them dangerous to others. There are lots of laws surrounding the handling of drugs, to make it difficult for people to illegally get drugs (as a doc, I can’t both prescribe and dispense drugs) or to steal or mishandle drugs. It’s just that all these laws, designed to keep your drugs safe, often get in the way of common sense when it comes to redistributing leftover drugs to others who might need them. I’m guessing that the nurses in Iowa City ran afoul of these laws, but were able to get away with it until someone, for some reason, blew the whistle on them. It’s too bad that there’s not a good, legal way to use these very expensive drugs when they're left over and not needed.

I received a number of very nice comments about my last letter, complimenting me on my descriptions of Alaska and some of the things we’d seen. My biggest fan, my Mom, wrote, “I enjoyed your letter about your trip to Alaska. It made me feel like I was there.” Sister-in-law Kristy said just about the same thing. Phil Dennis up in Juneau gave me high marks also. “Just finished reading one of your best pieces of writing. Your nature descriptions both scintillating and clean as a whistle.” His wife, Clovis suggested I start writing for the Juneau chamber of commerce. “I loved your latest piece of writing. Beautiful, just beautiful descriptions. Never seen it written better. You should be working for the Juneau Chamber of Commerce.” My friend Shara, down in Castle Rock wrote to say, “I love your vivid descriptions!” (Shara and her husband and I have known each other for years. She’s been a favorite patient, and we’ve been through a lot together; surgery, pregnancies, both good and bad, her MS and my leukemia. We know each other well. She recently wrote that we needed to get together for brunch or something, so we could spend some time talking. “The only times I ever get to see you, I’m naked!” she wrote. How many of you have THAT problem?)

Well, I really appreciate all the wonderful comments about my writing, and I have to tell you, I really enjoy doing the writing, but I suspect that for every person who thinks it’s great, there are probably three who roll their eyes when I launch into my best Bulwar-Lytton excess. But, it’s just that I think I see more detail in the things around me now, and want to record the things I see. I could have written so much more about that scene on the beach but I felt I’d probably gone on too long as it was. As I was standing on the boulders on the beach, I was noticing all the different strata in them, and all the different colors, shapes and structures of the rocks around me. And all the birds in the distance, and the island across the channel with waves crashing along its shore too. I just seem to sense more and feel more than I ever have before, probably because I now realize, only too well, that I no longer have an unlimited life span, as I once imagined I had.

I felt the same way every day at breakfast in the Wolfhouse. The breakfast area in that wonderful B&B is just about completely glassed in. You can look from your place at the table and see through the trees to the Gastineau Channel. The channel is always active with birds of many types, almost always including bald eagles, which not uncommonly fly directly over your head as you watch them. Whoever decided to glass in the room was a genius. But, beyond the Gastineau Channel is Douglas Island. I described its shore. But it has mountains, beautiful mountains. And when we were there, they were all snow capped, “the mounts vanilla atop black granite,” as Phil has described them. I’d look and look at them every day, though they were always the same. I took many, many pictures, but they just don’t capture the feeling of seeing the beauty so close. Alaska has so much natural beauty, that they don’t even name all the mountains, glaciers, sounds, etc. There are four lovely unnamed mountain peaks across the Gastineau Channel from the Wolfhouse. Since no one has taken the time to name them, Phil took it upon himself to name them Wolf, Bear, Eagle and Peregrine Peaks.

I want to tell you about something we saw on this trip to Alaska which I’ve never seen ever before, anywhere. Imagine you’ve planted some grass seed in the spring, watered the seeds, fertilized them, protected them. In a week or so, they sprout, so you have small clusters of green, thin blades of grass. Now, imagine that instead of blades of grass, you are seeing crystals of ice growing out of the ground. We saw that in multiple places along the trails on Douglas Island. The ground is beginning to thaw at this time of year, but the air temperature overnight and in protected, shady areas, is still below freezing. Small seeps of water, micro-springs if you will, rise to the surface but the water freezes on contact with the air, and the resulting crystal is pushed out by the force of the water below to grow longer and freeze more. I was amazed. I’ve never seen that in Germany or any other place we’ve lived. But the locals see it all the time and weren’t impressed.

Last weekend, Kathy and I took a very quick trip to Stillwater, Oklahoma to visit her dad. We hadn’t seen him since last summer, and wanted to see how he was doing. We had hoped to go earlier in the month, but the delays in my therapy pushed back all our plans. We actually weren't going to go at all, but United surprised us with a weekend special e-fare, so we decided to buy the tickets and then go, or cancel, depending on how I was feeling. I was feeling somewhat stronger by the time we were to go, so we went.

Kathy’s dad is 92 years old. He has always been a strong, independent man who took care of himself and the other members of his family when they needed help. He mowed his own lawn up until about two years ago. But time caught up with him and his wife of 62 years, so last year they moved into a very comfortable assisted living home. Then, his wife died suddenly of a stroke. I mentioned that event last year in these letters. It is remarkably sad how much Kathy’s dad has now declined since losing his wife eleven months ago. Functionally, physically and mentally, he is not the same person. He remembers his daughters, for the most part, but easily confuses the supporting cast, the grandchildren, sons-in-law, etc. He generally doesn’t know what time of day it is, what meal is coming up, etc. It is so sad. But, all too predictable. Statistically, I think most elderly surviving widowers die within one to two years of losing a long time spouse.

Which made me wonder, again, when is the “best” time to die? Is there a “best” time? For Kathy’s dad, it would have been when his wife died. He even said as much, that if he could have, he’d have gone with her. But we don’t generally get to make those decisions. Now, it would seem that life has no joy or meaning for him. Disabilities and infirmities will eventually affect us all. When should we go? What’s the best time?

When we left Stillwater to go back to Oklahoma City, to catch our return flight, we arrived at the airport and checked in a record three hours and twenty minutes early! As I’ve often mentioned, my wife wants to make sure we never get anywhere late. Our children would be proud.

One last thing: over the many months I’ve been writing these letters I’ve often mentioned our friend Jane who lives in Iowa most of the year, and in Florida in the winters. Jane’s son Randy turned fifty a few months ago. He promised himself that when he turned fifty he’d get a prostate check and a full exam. His prostate test, the PSA (prostate specific antigen) was abnormal. He underwent a full workup and eventually had surgery not too long ago for prostate cancer. Now he’s been found to have metastasis to a rib, which has been removed, and now he’s getting hormonal treatments. If you’re the praying kind, please remember Randy tonight. He, his wife and parents have had a rough time lately. Thanks.

And, I went to work today. I had a fairly light day, but now I am very tired. Tomorrow will be a very busy day, so I’m going to try to get to bed early tonight. So, I’ll close and I hope to remember to scan and attach a couple of “bald” pictures as requested by several folks.

Until later,

Dave

Book Two, Postscript One: Alaska, and Wonderful News

2004-03-25T17:29:00.000-06:00

Dave’s Great Adventure, Book Two
Postscript One
March 25, 2004
Juneau, And Wonderful News

Our approach to Juneau last week was awesome.

As we took off from Seattle, our pilot reported to us that it was 32 degrees (0 C) and snowing in Juneau. We hadn’t expected to hear that, as the weather reports we’d been seeing showed highs most days in the low 40s or so. So we flew, mostly over clouds, until we neared Juneau. The we dropped below the cloud cover.

As the pilot guided the plane toward Juneau’s one runway airport, we followed the Gastineau Channel into town, flying between the Coastal Range mountains on the right and the mountains of Douglas Island on the left. We were below mountain top levels. It was snowing lightly. The mountain tops were pure white with fresh snow, while below them the sides were darkened with the green-black of the Sitka spruce, which struggled up mountainsides, smaller numbers of them with advancing elevation. The large forests of spruce were raggedly divided into sections by slashes of white, frozen streams which awaited the coming spring to be released to continue their downward journeys. The white slashes led down to the valleys, each of which was which were filled with clouds. It was a beautiful reintroduction to Alaska.

The trip itself, proved to be much tougher on me than I had anticipated. I hadn’t been doing much of anything around the house during the therapy, so didn’t realize how weakened I was. Plus, I was still feeling some residual effects of the Neupogen injections I had been giving myself, which make you feel a bit like you’re coming down with the flu. So, walking through airports, standing in long security lines, sitting in hard airport and airliner seats, and hauling luggage around, even for short distances, exhausted me. Having to go through security again when we changed terminals in Seattle was particularly long and onerous. I was very glad to get to Juneau. Our rental car was delivered to the airport, after a little confusion on the part of the agency, who didn’t expect us until we called, but we got the car and we were off to the Alaska Wolfhouse Bed and Breakfast, to visit with Phil and Clovis Dennis, just a few miles away. It was nice to be “home.” We talked to Phil and Clovis a while, then checked into our room and took a prolonged nap.

Phil and Clovis treated us just royally, even though we were just renting a room from them. We consider them good friends, after having met them last July when we first stayed in their lovely B&B on our trip up the inside passage (which I heartily recommend, but NOT on a cruise liner!). We had many great conversations with them during our first stay, but I realized as we were on our way back that we'd actually only had about six or so actual hours of “face time” with them, but that was enough to get to be great friends. And we’ve been e-mailing back and forth since. And, of course, trading experiences with technology and our frustrations.

And they cared for us as they would have old friends, or perhaps relatives. The first night, when we were so extremely tired, they invited us up to have dinner with them, a tasty Italian dinner with spaghetti and meat balls. A couple of nights later they had us up for a Mexican food dinner. Clovis spent a lot of time in Helotes, Texas teaching, and knows Tex-Mex! And we even went out for dinner with them a couple of times, once on Phil’s birthday, on Saint Patty’s Day. I wore my Irish hat which my sister Diane sent to me, for that occasion. How many of you have gone out to dinner with your B&B hosts?

We didn’t do an awful lot while we were in Juneau, but that was the plan. We were there to heal and rest. We didn’t have any day trips, serious hikes, or excursions planned. Each day we would drive the two miles into Juneau, walk around a bit, check e-mail at the library, and then, routinely, went back to the Wolfhouse in the afternoon to sleep. I usually “hit the wall” about two or three in the afternoon. When not sleeping in the afternoons, I did a lot of cross-stitching. Kathy and I are still working on a baby quilt for our second granddaughter, who will be two soon. We hope to have it finished before she graduates from high school.

If you’ve never been to Juneau, you should plan a visit. It’s a wonderful and very interesting little town. It is, of course, the capital of Alaska, which is our largest state. But Juneau is only about 30,000 inhabitants in size, probably not much bigger than Muscatine, Iowa, the small town where my Mom lives. It is, additionally, completely land locked. There are no roads into or out of Juneau. One arrives in Juneau either by air or by sea. The town itself has an abundance of old, Victorian style homes perched on the mountainsides around the narrow strip of coastal flatlands. It looks a bit like a miniature San Francisco. It is surrounded by forests, sea channels, glaciers and islands. There is arctic wildlife in abundance all around town. In fact, there is a bear den in the hill above the Wolfhouse, and the sow and her cubs walk around the neighborhood with regularity. Bald eagles are seen commonly. In the nearby waterways one can see humpback whales, Orcas, sea lions, and sea otters.

And it’s simply beautiful everywhere you go. One day we took the short drive over to Douglas Island, and headed the ten miles or so to the end of the road. There, at the northern end of the island there is a stand of old growth forests. We first encountered old growth forests near Gustavus, Alaska last July, when we went to Glacier Bay. Before you enter any of the forests, or start out on any trails, there are always signs warning you of the danger of bears. You are warned to make a lot of noise and talk loudly as you walk through the forests. Also, the signs routinely instruct you, that if you come upon a bear, you should “Identify yourself to the bear as human.” I never knew what this meant. Do you say, “Excuse me Yogi, but I’m a human and you shouldn't eat me?” I still don’t know what it means.

But, regardless of our instructions and intentions, once we entered the old growth forests, we were instantly awestruck! We would walk slowly among the hundred-foot tall pines and spruce, with light filtering down from above. It felt like a holy place, almost more so than in church. We were absolutely silent as we walked. The ground was covered with a thick drapery of insulating moss which grew up the tree trunks and covered all but the largest rocks. Mosses hung from the tree branches. Small pools of brownish water collected among the tree roots and rocks. The primeval splendor was so captivating that we felt transported to another place and time. But, then we realized we weren’t talking loudly, so as to scare off bears. We would do so, and the spell would be broken.

We didn't need to worry about bears this time, however, so as we set off on the short path towards the shoreline, we were able to be lost in our silent thoughts as we walked quietly along the log and packed earth path. I took pictures, of course, but never do my pictures do justice to the beauty and magnificence of these forests.

A short walk brings you to the shore. On the way down the path we encountered a group of teens coming back up. Some were in short sleeved shirts. One girl said to us, “It gets cold down there” even though we were dressed more warmly than they were. Perhaps they could tell we were out-of-towners, tourists. It had been calm, and not unpleasant at the road, just a quarter mile from the shore.

But then we stepped out of the forest and beheld the sea. The seasons changed from spring-like to stormy. It was a beautiful day.

Now, it wasn’t a beautiful day as in, you step out into the backyard and feel 75 degree temperatures with a gentle breeze and see partly cloudy skies and say to yourself “What a beautiful day.” This was a different kind of beauty. Phil Dennis describes places like this as being “severely beautiful.“

It was overcast with low hanging gray clouds. The wind was blowing down the shoreline about thirty miles an hour, and it was about 35 degrees. The grey-green breakers, two to three feet tall, were crashing on the boulders-rocks-gravel-sand beach. With each crash of waves, sea foam was whipped down the beach. I stood on the boulders on the shore. The wind tried to push me off. To my left, as I looked down the shoreline, the forest swayed with the winds. Kathy stayed within the trees for shelter from the wind. To the right, whitecaps extended into the distance. A lone bald eagle swooped, hovered and soared above the waves about a hundred feet off shore, vainly looking for a fish. About thirty yards behind me, a bluff extended about fifty feet straight down into the water. A solitary spruce about fifteen feet tall struggled to grow out of the side of the bluff at a 45 degree angle, destined to fail and die, as there is not enough soil to support its growth much longer. The teens were right. I had on a long sleeved shirt, sweatshirt, warm jacket and my Antarctic parka all on, and I was cold. My eyes were watering and my nose was running. But it was captivating. I stayed there for about twenty minutes, just taking in the wild beauty of the place, listening to and feeling the wind, seeing and hearing the waves and looking at the eagles and gulls high overhead. Then we walked slowly back to the car.

We flew back to Denver the next day, Sunday. I had an appointment with my Doc, Jeff Matous on Tuesday. Jeff was of course very pleased with the collection numbers, but what I wanted to hear was the results of the flow cytometry, the test which would tell us if we had collected normal or abnormal cells. Jeff had nothing but great news. The flow testing showed that 99.95% of the cells were normal. Only 0.05% leukemic cells, which was great news indeed. It was better than we had expected or hoped for. That means that if/when I need a transplant with these cells, I’ll theoretically get a greater percentage of cells that are normal than those I had when we first started my treatments a couple of years ago. And there remains the possibility that in the interim the technology will advance to the point where we can treat the collected cells to eliminate those remaining leukemic cells.

I got some other news that I also thought was very good, but not about me. When I finished my stem cell collection, I still had about $3,000 worth of Neupogen left over in my refrigerator, and about $120 worth of Anzemet. I didn't need these medications, but no pharmacy will take back meds once they’ve been out of their control, no matter how much they’re worth. But I was loathe to throw so much money’s worth of medication in the trash. So I inquired at the Rocky Mountain Cancer Center to see if they might have any use for the meds, and would it be legal for them to take them. Indeed, they could. They have a program for indigent persons who have trouble paying for their insurance and/or medications. They took the meds for this program, where someone will be able to benefit from them. I’m very glad I found a good home for these medications.

One last thing before I close this postscript. I have long wanted to see some northern lights, the auroras. Last summer when we were in Alaska it was only dark for a few hours a day, and the dark hours were so late that Kathy and I were never awake when it was dark. So, on this trip to the north, we went out a couple of times to sit in the car on the coast of Douglas Island and look for auroras, which form on most nights. I’m happy to say that we did indeed see the greenish glow of the northern lights creeping along the sky on our last night in Alaska, hanging over the Mendenhall glacier. Not too spectacular by some standards, but now I’ve seen the real thing.

I’ve surely written more than enough, so I’ll close this postscript and get it on its way. I still plan to go back to work next week, starting on April Fools Day. The joke will be on my patients who will find that their doctor suddenly (to them) looks like Yul Brynner. If anything of great interest happens, I’ll release another edition of this never-ending series.

Until then....

Dave

“Why me, oh Lord, why me?” he asked.
“Why NOT you, Bub” came the answer.
(philosophy from Phil Dennis)

IF I SHOULD FALL BEHIND

We said we'd walk together baby come what may
That come the twilight should we lose our way
If as we're walkin’ a hand should slip free
I'll wait for you
And should I fall behind
Wait for me

We swore we'd travel darlin' side by side
We'd help each other stay in stride
But each lover's steps fall so differently
But I'll wait for you
And if I should fall behind
Wait for me

Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let's make our steps clear that the other may see
And I'll wait for you
If I should fall behind
Wait for me

Now there's a beautiful river in the valley ahead
There 'neath the oak's bough soon we will be wed
Should we lose each other in the shadow of the evening trees
I'll wait for you
And should I fall behind
Wait for me

Darlin' I'll wait for you
Should I fall behind
Wait for me
----Bruce Springsteen

(We first heard this song on a videotape while staying at the Wolfhouse. If you’ve never heard it, as we hadn’t, try to borrow a CD or cassette and listen to it. I don’t particularly like Springsteen, but this song is just lovely.)

Collecting Stem Cells

2004-03-15T17:13:00.000-06:00

Dave’s Great Adventure, Book Two
Chapter 2, Verse 11
March 15, 2004
The light at the end of the tunnel.

They say that you should beware of the light at the end of the tunnel. Often, it is just the headlight of a train, about to run you down yet again. I have seen that light several times recently. But, I guess, eventually the trains stop running and you actually get to the other end of the tunnel.

The last time I wrote, I had just completed the accidental extraction of a large bore tube that entered my chest and wound down into my heart. When it was placed, it had been sutured into my skin with a couple of non-dissolving sutures. They really bothered me. They hurt, pulled, irritated my skin, and eventually looked like they were getting inflamed. I asked the nurses if we could take them out. They asked my doc. Jeff said we should leave them in, that sometimes if the stitches were taken out, the catheters might accidentally be pulled out. I was thinking at that time, “You’d really have to be some kind of dumb ass to accidentally pull out your catheter.” But, I kept pestering the nurses, and they took them out, one at a time until, three days before I yanked mine out, I had none left.

And you know what happened. “Dumb ass!”

So, I went back to the clinic to see what we would do about my lack of large bore access to my blood. They sent me up to the apheresis room at Presbyterian-St. Luke’s, which is where the stem cells are collected, by a procedure called, what else, “apheresis.” That’s a way to get the stem cells out of circulating blood rather than having to suction them out of one's bone marrow, which was done until recently. There, they were to evaluate my veins as to adequacy for apheresis by large IV needles, rather than by another central line. We met Mary Kay, one of the techs. She inspected my veins and pronounced them adequate “for multiple days of collection.” That’s what I wanted to hear, no need for another central line. While we were there, we also got the great news that my white count had finally gone up, from the 0.3 (or 300) that it had been for days, up to 1,000.

Now, 1,000 white cells is still a very low count, by most normal standards. In fact, it’s lower than my count ever got when I went through my first rounds of therapy back in 2002. But, in this circumstance, it meant that my marrow was rebounding, and that we could expect that there were stem cells being pushed out into my blood. Ergo, we could start the collection process. We were told to report back to the apheresis room at PSL at 0700 on Friday.

By the way, while we were at the clinic, I spoke with Jeff for a while. I knew that this procedure was at least relatively new for leukemic patients, being done primarily on folks with lymphomas. I asked Jeff how often he’d done this on leukemics like myself. “Never, you're the first. It’ll be interesting to see how it works out.” How about that? I was the first patient my other doc had done the FCR regimen of chemotherapy on, and now I’m the first to get this type of stem cells collected. I’m turning into a very expensive guinea pig.

We arrived there promptly as instructed. We’re never late, not with MY wife getting us around. Mary Kay wasn’t there. Angie was. Angie took a different view of my veins. She agreed that they looked pretty good, but she wasn’t at all thrilled with having to try to put two large IVs in my arms and keeping them there, functioning, for the five hour process. But she was willing to try. What else could she do, I had no central line in place. So, she expertly stuck a couple large IV needles into me, taped them in place, and away we went. Things went pretty well at first, but (and I had this problem last year too when we tried this) I soon had to pee. They tell us to “hydrate well” before coming in, so our veins will be full and offer easier access. But, all that fluid has to go somewhere, and that means peeing. But, with both arms relatively immobilized by having the IVs in place, I needed help. Just like last year, my patient wife was called upon to become a nurse’s aide and help me get Rover going into the right direction, into the urinal bottle. But, just getting up was a problem. One really can’t go from a reclining position to an upright one without some motion, and when you have two large, bare needles in your arms, motion translates into damage to the walls of the veins. And that damage compromises the collection process.

By the time I had gotten up twice to pee, over about four hours or so, the access line was kaput. They replaced it further out to a vein on the side of my arm, but it didn’t do as well as they wanted. After the completion of the five hours of collection, they had only passed my total blood volume through the machine four times. They wanted six passes of my blood through the machine. By now it was about 2 PM. We had been there seven hours, hadn’t had lunch, and were very tired from having gotten up at 5:30 that morning. I heard phone calls being made. They returned with a verdict. I needed to have the great big central line replaced before they would collect more stem cells. I had an appointment back in the cardiovascular lab at 3:00 PM. Meanwhile, we heard that my white count had now risen to 4,000. Still rising nicely.

So, we waited until the given time, went downstairs, and there, in about twenty minutes, with a little local anesthetic, another line was put in, a little bit different from the first. This line was called a Quentin Catheter, and didn’t tunnel up under my chest, but went almost directly into my internal jugular vein, down THROUGH the upper right chamber of my heart and into my inferior vena cava (the large vein in the abdomen). This line wasn’t designed to stay in more than a few days, but we didn’t expect to need it more than a few more days. It hurt a little bit, but not too badly. We were told to report back to the apheresis room again the next morning, at 7:30. Alright! We could sleep in a little bit. But sleeping with a big tube in one’s neck wasn’t at all easy.

The next day we got up. There was something else going on now. I was seriously molting! My hair was falling out by the handsful. I decided this was the big fall we’d been waiting for. It was time for the haircut! But, we had to go back to the collection room first.

We were back there at 7:30, as instructed. Mary Kay was there to take care of me. I was the only patient there; they had opened up the whole place just for me! She drew labs, like they always do, hooked my Quentin catheter to the pump and away we went again. This time, with the central line in, it went much faster, and I have to admit, I was much, much more comfortable. I wasn’t restricted nearly so much in my movements, as there were no needles to potentially dislodge. We got my white count back. Now up to 10,000! But my platelets were down to 50,000, as a result of having been skimmed off with the stem cells the previous day, normal being 200,000 to 400,000, but anything over about 20,000 being considered okay for clotting functions. We also heard that we had collected about 2,500,000 stem cells the previous day. That was exceedingly good, no, GREAT news. The minimum number of cells we wanted to collect was 2 million. We hoped to collect about 5 million. We were on track for a great collection.

I stayed on the machine for the full five hours and they got my total blood volume to go through the machine’s innards six full times. I think that is amazing. The collection went off without a flaw, but just as we were about to finish, I began to feel weird. I was starting to tingle all over. That is a complication of the process, in that it takes off my serum calcium too. They gave me some Tums to chew, no better. They gave me an injection of calcium in the IV, no better. Another shot, still no better. They called the doc, he ordered a third shot in the IVs. I started to feel better, but slowly. It took so long because, I , being a doc, had ignored the tingling feeling for an hour or so until it got so bad I couldn’t ignore it. Eventually, the tingling, and the danger of seizures, went away.

At this point, we didn’t know whether I’d need to be “collected” again the next day or not. Mary Kay said she’d call us when the labs were back with the day’s count, but that wouldn’t be until five in the afternoon or so. So we left, but on the way home, we stopped by my barber shop, where the gal that cuts my hair was able to work me in for a buzz cut. Kathy was taking pictures the whole time. Hey, we did a Mohawk, got some pictures of that, and then took the rest off.

Then we went home and then out to get some late lunch/dinner. The call about the stem cells came right at five. We had gotten another 4 1/2 million stem cells! We were finished! With the previous day’s collection, we had over seven million of the little guys who were someday going to be called upon to save/prolong my life if things weren't going well. Plus, as a little bonus, we had a quarter million more cells from last year’s collection. But I had some unfinished business. I still had the tube sticking in my neck. What the heck do you do on a Saturday night when you want a tube taken out of your neck.

I went to my clinic, the local Kaiser clinic, and checked in. “What can we do for you, sir?” “I’m having a problem with my central line,” I answered. “Okay, take a seat and we’ll be right with you.” We waited a few minutes, the nurse came out. “What’s the problem with your line, sir?” she asked. “I want it out, I don't need it anymore.” She was a little taken aback. “We can’t do that here sir, you’ll have to go to the hospital.” But I explained that it was a simple line, the removal was simple, and that I had, in fact, recently removed a similar line in the shower. “Well sir, we still can’t do that here.” So I pulled the trump card. “Who’s working here tonight?” She began telling me names of the docs who were there. The first was a Dr. Boyer. Well, I know Dr. Boyer, actually helped with her recent pregnancy, and asked if I could speak to “Sarah.” She asked if I knew Dr. Boyer and I told her I did. Sarah came out. She knew what I wanted, and was willing to pull the thing but wasn’t really too anxious to do so, not knowing if I’d bleed or not. I told her all my blood counts, all adequate, at least according to the books. “Will you clot for me if I take it out?” “Well, in theory I will,” I answered. We went back to the procedure room, took it out, and all went well. Now I could sleep!

The next morning we got up and went to church. I was feeling itchy. I realized that all the remaining 1/16 inch stubble on my head was still falling out and was all over and in my clothes, making me feel like I’d just come out of the barber shop again. We met one of my patients after church. We joked about my new “do.” She introduced me to her husband, whom I hadn’t seen since she was pregnant about eight years ago. “Hey, you look good in eyebrows,” he remarked. I guess he liked my new hairdo.

We went back home, I got in the bathtub and got out a fresh razor and started shaving the rest of my hair off. Went through two fresh razors. Got a lot of cuts on my scalp, too. But, now it’s all off.

And I'm all done. The treatments are all done, I’m not on any more drugs, and all I have to do now is recover. Kathy and I leave in the morning for Alaska for the R&R I mentioned a few weeks ago. We’ll be staying with the lovely Clovis and curmudgeonly Phil at the Alaska Wolfhouse B&B in Juneau for a few days as I rest up, and Kathy will be able to rest as well, as she won’t be “on duty” the whole time, and will be cared for as well. She deserves a rest too.

It’s a bit surprising that, as long as it took to get there, and with all the complications and problems we had along the way, once we got on with the collection process, it was over in a flash. And I think that will be the end of Book Two, except that there will likely be a postscript or two over the next few weeks. For example, we haven't gotten back the lab tests that will determine if we can actually use the stem cells we collected. If there are too many leukemic cells in the batch, we might, in theory, toss out the whole thing and it will all have been for naught. But we're not going to think that. I’ll pass that information on when we get it. Until then, though, this will be the end of Book Two, and I hope not to start Book Three for a long time.

Bye for now,

Dave

“Frisbeetarianism (n.), The belief that, when you die, your soul goes up on the roof and gets stuck there.”

Work like you don't need the money.
Love like you've never been hurt.

The DGA Special Humor Edition

2004-03-11T17:00:00.001-06:00

Dave’s Great Adventure, Book 2
Chapter 2, Verse 10
March 11, 2004
Special Humor Edition

Hey, if you don’t think there’s anything funny about dying on a cross while you sing songs, well, I‘ve got more stuff for you.

Today I, as my kids would say, "screwed the pooch."

I was in the shower getting ready to go to the lab, early as usual, to get blood drawn. As I was washing up with the washcloth, the tail end of the cloth apparently wrapped around the Optiflow and, that easily, yanked it out of my chest! It was a bit of a flail at the time, as I had soap in my eyes, shampoo in my hair and couldn't see well, but suddenly the catheter was sliding down my chest into the tub, with a stream of blood hot on its heels.

Now, the wound is so high up on my chest that I can't see it without a mirror, so I clawed around madly, trying to see through soap blurred eyes, trying to cover the "exit wound" with one hand to stop the bleeding while I tried to rinse off my head and body with the other, all the time wondering, "Do I put pressure on the skin wound, or on my jugular where the 22 caliber hole is?" I guess my platelets are doing okay. By the time I rinsed off, the bleeding had completely stopped. I walked down to see Kathy with the catheter in my hand, and was met with a gasp. Now, we'll need the damn thing any day now (with luck, if my white count will ever go up) so I called the clinic, with great trepidation, to confess my sin. What they'll have to do is replace it with another, different kind of catheter, before we can collect any stem cells! Dammit! Details to follow.

My white count as of today is exactly, precisely what it has been since we started doing the blood counts. That's not what I wanted to hear. Every day that it stays low delays the start of our collection process. Tomorrow I go downtown for my blood tests and they'll do some more specialized testing of my white cells. Likely more expensive tests, to boot.

I was talking to Joan today. She asked, "What, didn't you have enough material for your DGAs?" Hay Man Ray, up in Montana, said he thought I was catching his “clumsies.” His dad used to say to him that he “was as clumsy as a bear cub masturbating with boxing gloves.” Now, that’s an interesting visual.

See, I thought you’d think that was funny.

I have another short exchange that I’d like to send along to you, an e-mail exchange that had us laughing loudly at the descriptions of two technophobes that some of you know. We’ve been corresponding with Clovis and Phil Dennis up in Juneau since last summer when we stayed in their B&B for a while. Clovis responded to a recent “Adventure” letter, setting off a series of messages. See if this stuff makes you laugh too. Caution: mild profanity ensues!
You guys don’t know Phil, but he and I are both curmudgeonly, anachronistic stick-in-the-muds. We don’t do well with change or new technology.

Last Monday Clovis wrote the following in response to my letter, in which I mentioned getting the new and improved seventeen inch monitor

“As soon as your pop quiz hit my screen, I printed it out, then took it. Did very well too, only missed a couple but finding the answers!! Zowee! I print out everything you send because unlike some people I know, we only have an old 12/13 inch monitor. The letters on our old black keyboard have worn off too, and since Phil types with “two fingers looking,” I painted crude letters on the keys with paint and the sharp point of a pencil. Talk about high tech! We do not want to miss a thing you write and appreciate very much your sharing, so keep those cards and letters coming.... I have a different take on money than most. There is always another dollar to be made and if you have it, use it for what is meaningful to you. And I know your life is meaningful to you and Kathy and a whole lot of other people, so do what you can to keep it viable!”

I responded: “Hey, are you giving me permission to get the $6000 plasma TV, or what?"

I type with two fingers too. I haven't worn off the letters, yet, but I have ruined more than one keyboard by slamming a fist into it when the computer wouldn't do what I thought it was supposed to do. So I get new keyboards frequently! I actually broke the desk one time. I guess I need anger management classes. I get frustrated with technology that (seemingly) gets in the way, rather than helping. Of course, it's really my fault, most of the time.”

Then Phil wrote:

“Morning David: I smile (broadly) at your mention of intemperate behavior vis a vis technology. As a college freshmen and aspiring writer, I therefore assumed I needed to know how to type. How could I become the next Ernie Hemingway in longhand? Then I ran into the GD machine, AND a school marm anal retentive control freak instructor. One fine day when she was castrating us in singsong fashion by subtracting 10 words per mistake, I swept up the dang typewriter in my strong male arms and in one fell rebellious swoop pitched it out the open window. It helped the fall and impact being’s how we were on the building’s third floor! Of course that ended my typing class and mayhaps my writing career. And cost me all the shekels in my jeans. But to this very moment, I have no regrets. So, I identify with you my friend. It's basically a Japanese conspiracy to destroy what little remains of our masculinity and mental health.

And, yes by all means buy the dang plasma TV. Cheers, Phil “
That led to my thoughts on the matter:

“Hi Phil,
I had to laugh out loud while reading your descriptions of the typing class. You had the balls to do what I have always wanted to do. I have felt on so many occasions that it would give me tremendous satisfaction to take the f-ing computer and toss it off our second floor deck. Unfortunately, we have grass below so it wouldn't give a very satisfying "crash" unlike your third floor impact.

At work we went from traditional hand written charts to fully computerized charts about four years ago. Not a good time of my life. "Piece of sh*t!" emanated from my office doors on a regular, almost hourly basis. The fact that I can't type without looking at the keyboard didn't help, as I'd laboriously type (I really mean "peck out" with my forefingers) a long complex patient note, only to look up and find that caps lock had unexpectedly been on the whole, or part of the time, or that I had unexpectedly hit some other key which stopped the note from even being entered, and the note resultantly looked like hell. "Piece of sh*t!" Slam, bang!

The company replaced a couple of keyboards and a few mice, at first. Then I got the word that any more would be at my own expense. They sent someone out to help me learn the computer system. I thought she was a computer geek. She spent hours with me, showing me shortcuts, tricks to make it easier, etc. Only later did I find that she was a shrink sent out as sort of a damage control manager, trying to make me take it easier on the company equipment. Hey, they thought I was crazy or something! "Piece of sh*t!"

Clovis responded:

“Hi David,
Now I know what Kathy has put up with all long years because you sound JUST like Phil!! I'm sure she is like me and doesn't get excited when you rant and rave about technology, but if there is anyone else around, they are certainly taken aback. Even the dogs run and hide when Phil starts yelling to the gods. "Piece of sh*t!" How many times have I heard that! We too laughed out loud at your last descriptions. Wonderful writing. Makes us appreciate even more the effort you have taken to communicate with us. A labor of love really, thank you again.”

And with that, I’ll close. I think this is by far the shortest DGA I’ve sent out since I first got the fuzzies. Enjoy the respite.

Later,

Dave