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
Wednesday, July 21, 2010
Saturday, March 6, 2010
The Leukemia Roller Coaster
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
Friday, February 12, 2010
Overdue Update; Things Look Good
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
Tuesday, February 17, 2009
Setbacks
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
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
Friday, December 19, 2008
Update, Apologies and New Goals
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
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
Saturday, August 9, 2008
A Very Short Update
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)
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)
Monday, July 21, 2008
Cinders
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
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
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