Thursday, December 19, 2002

Complete Remission!

Dave’s Great Adventure
Chapter 5, Verse 5
December 18, 2002
Merry Christmas!!!

What a wonderful, wonderful Christmas present! I just got a phone call which had great news, news as good as anyone could hope for. My doc called and told me that my bone marrow biopsy was normal. They did a couple of tests on the marrow sample, and in neither could they find any leukemic cells! That’s really all the more amazing as just six months ago my marrow was comprised of 40% leukemic cells. Now there are none they can find. They also looked for telltale antigens on the cells and couldn’t find evidence of abnormal cells. That’s just excellent news!!

I couldn’t have asked for any more out of the therapy that we did on me over the past six months. I’m so grateful that the new medication (the Rituxan) was available and that my doc was willing to try the new combination therapy on me. Remember, I was the very first patient he tried it on. I also have to be grateful that my marrow responded so well, and so rapidly. At first I was disappointed when we had to stop the therapy after only four cycles (out of six planned) but four cycles were obviously all my marrow needed, at least for now.

So now we wait. I’m in a complete remission. Remember, however, remission doesn’t mean “cure,“ but rather means “no evidence of disease.“ I’ll be getting blood counts every month for at least the next six months to a year and will be seeing my doc about every three months for the next year. As long as my blood counts remain normal I’ll be in remission. How long will that last? Well, as my doc said last summer when we started the therapy, “We don’t know because we’re ‘writing the book’ right now.” In other words, there is no long term follow-up on this therapy to see how long the remissions last, or if, perhaps they are permanent. If they are permanent, that could be the “C” word (I hate to say “cure” because there really isn’t one yet, but this new stuff may be the answer...time will tell). I’m one of the pioneers, if you will, of this new therapy. And a very happy pioneer to be sure! There can’t be any better Christmas present than to be told that your cancer is gone!

Since I’m feeling better all the time, the only problems that remain are my suppressed immune system and my slowly improving memory problems. I’ll be on antibiotics for another nine months or so against certain bacteria (pneumocystis carinii, I believe they’re called) which can cause pneumonia in immunocompromised patients, I’ll also be at risk for viruses like the flu and colds, etc., for about that length of time. I’m going to continue to try to avoid anyone who is obviously sick and will continue to wash my hands compulsively throughout the day. I did get a flu immunization, but there is question about whether or not my immune system will be able to create antibodies (antikoerper) against the flu virus, as it has been so battered by the chemotherapy and will remain less than completely effective for many months.

I’ll be going back to work for a few days next month and then probably will be back full time in February. The nurses who put patients in the rooms for me will try to make sure that I am not going to see anyone who is obviously ill with a cough or cold since I will be at risk of infections for a long time.

One other step we’re still working on is to see if it would be reasonable to collect my stem cells at this time, for use later if/when I relapse. If we’re going to do it at all, this is an excellent time, as my marrow seems clean of malignant cells. As Brian said today when I talked with him, “It looks like we’ve got a pretty clean product now.“ Product? I guess that’s how oncologists talk about marrow. Anyway, Brian is in contact with the “transplanters” to get their opinions about an “autotransplant,” or a possible transplant using my own stem cells at some time in the future. It has been done many times in the past and the advantage is that there is no risk of the “graft versus host” reaction (in which the antibodies of the normal, immunocompetent transplanted cells attack the weakened, immunocompromised cells of the patient). This reaction is what causes much of the 25% death rate with marrow transplants. If we’re going to collect them, I’d like to get it scheduled before I start back to work. I really would like to collect the would be like having an insurance policy against a relapse. And it only costs about $200 a year to store them. Of course, the collection costs would be much greater.

So, what are we doing now, other than celebrating our good fortune? Our son Jonathan, who lives in El Paso, recently visited us with his girlfriend, Natalie, whom you heard about in our report from Las Vegas last August. She hadn’t been to Colorado before so we took her to the mountains to visit the snow and did a few other “Colorado“ things. Jon wanted to visit the new football stadium where the Broncos play so we also took a tour of the new “Invesco Field at Mile High,” a name only someone who works at Invesco (an investment firm) could like, as it’s named after a financial firm rather than any sports team or sports person!

And next week we’re going to have all our kids and grandkids here for Christmas! What a great way to celebrate this wonderful news! We really look forward to having all the family here.

And now for the bad news...remember when I first started my chemotherapy and the instructions I was given to get more calories, more fats in my diets, more gravies, more of every thing? Remember when I would go out for frozen custard every day? Well, now I have to go back on a diet and start watching my cholesterol again!! When I had active leukemia I really didn’t care about my cholesterol level, since it was so much less important than the leukemia. That’s no longer the case. You know, if it’s not one thing, it’s another. Of course, I’d much rather be watching my cholesterol than my leukemia!

December 19, 2002

We went out last night to have a celebratory dinner with our friends, Lou and Joan, to mark the occasion of getting evidence of my total remission. So, I didn’t get this letter out. But I’ll finish it up and get it on its way to you.

Last night Joan, who has faithfully been sending cards to me just about every day since I started the chemotherapy, said she guesses she’ll stop mailing the cards now. I guess that’s fair. What I’m going to do is start mailing cards to one of my colleagues. Those of you who have been getting my “journal” since the beginning may remember that I mentioned a colleague who was battling a recurrence of her breast cancer. She’s the one who warned me about the “fuzzies” I would get after each round, when I wouldn’t be able to think clearly. She also worked in my place in the clinic last August while I was out of the office. Well, she has gotten some more bad news. She has a large number of metastases of breast cancer in her liver. That is extremely bad news. She is considering going to M. D. Anderson Cancer Center in Houston for some radical therapy. I feel it’s my turn to be sending cards now, and I’ll be sending them to Laurel. If anyone that gets my letters would like to send her a “thinking of you” card also, her address is:
Dr. Laurel Harkness
9192 South Buffalo Drive
Littleton, Colorado 80127

Our friend Jane Forte, who winters in Florida and summers in Iowa, wrote to tell me she doesn’t think my memory problems and other lapses are necessarily the result of “chemo brain.” She says as one gets “older” (she didn’t say “old“) these things happen. Jane’s a bit older than me and says she knows from first hand experience that you don’t have to have chemotherapy to start forgetting things and saying things that you didn’t mean or expect to say. Yeah, Jane, but I’d rather blame it on the chemo than my age!

I’m trying to see if I can get my responsibilities at work changed to some extent, to eliminate some of the things I really don’t like doing. Though this remission is extremely encouraging, the average life expectancy for my disease is still only six years from diagnosis to death. And I’ve already used up one of those years! I’d like to plan a relatively relaxing time at work for the next few years and not have to do the things that cause me the greatest stress. For example, as I get older I enjoy surgery less and less. As you gain experience, you realize all the things that can go wrong in the operating room. I’d like not to do surgery and things like that for my last few years with the group. I’ve written a letter to the chief, to see if I could become primarily a clinic, daytime doc, but the initial response was to deny my request. So I’ve written another letter. We’ll see what happens, and what my options are.

I think that’s about enough for now. I’ll add a couple of post scripts from time to time, when there is any news to report, but otherwise this will just about wrap up Book One of the adventure. I hope that there isn’t the start of Book Two for many years. Thanks for all your comments, notes, prayers and interest in my progress. We’ll keep you up to date about any significant changes in what’s going on here.

Until later,

Wednesday, December 11, 2002

The Bone Marrow Biopsy and "Chemobrain."

Dave’s Great Adventure
Dave's Great Adventure
Chapter 5, Verse 4
December 11, 2002
The Bone Marrow Biopsy

Well, yesterday I had my follow up bone marrow biopsy. It’s not what I would call a good time, but it’s probably not as bad as I thought it would be before I had my first one, or as bad as it sounds.

But first, an update on my last blood count which I had two days ago. Things are very slowly normalizing. My previous white count was low at 2,100 or so, and my neutrophils had dropped to sub-normal levels again after having gone up quite a bit with the Neupogen. Well, now things are approaching normal without extra medications. My white count is in the low but normal range at 3,300 (normal is about 3,000 to 12,000) and my neutrophils are also low-normal at about 1.7 (normal being 1.5 to 7.5). My red cell and platelet counts are still normal. The only thing that is still low is my lymphocyte count, which is still quite low at 0.6, but that’s okay for now...that’s what we want. My doc surprised me today when he told me they would likely be low for nine to twelve months. Also, since they will be low for so long, I’ll be susceptible to colds and the flu for at least that long.

So, I went in for the bone marrow biopsy today. The biopsy was taken from the same place as the first one, the back of the hip. They again gave me some intravenous drugs to sedate me a little, at my doc’s suggestion. I didn’t think they gave me enough...I was still talking and making sense as we started the procedure. Brian injected some local anesthetic and started the biopsy. I really felt it when he hit the periosteum, the tissue that covers the bone (bone itself really has no feeling; when you break a bone, it’s the periosteum that causes all the pain). I jumped a bit when I felt that, since it felt kinda like a nail going into my back, but then I settled down. It hurt again when Brian aspirated on the great big syringe he was using to suck out the marrow sample. Most people say that this it what they feel the most. I have to agree. But then, it was over. It took all of about five or six minutes and there was no pain afterwards. I stayed in the treatment room until the drugs wore off and then Kathy drove us home.

The results of the biopsy will be available in about a week. I think I mentioned a few letters ago that we are going to do flow cytometry on the sample, looking for residual leukemic cells, so the results will take longer than they did the first time. I think that the flow cytometry will give us about the same kind of information that the PCR (polymerase chain reaction) test I have also mentioned would give us. If there are no apparent leukemic cells remaining, that will be an excellent result indeed!

I have mixed feelings about getting the bone marrow test done. Ever since we started the chemotherapy I have had fantasies about really getting “cured” of this disease. I think there is a chance of this happening, but it’s probably not realistic to expect it. As long as my blood tests were looking as good as they have, however, I could continue to think I was getting cured, but when the bone marrow biopsy results come back I’m afraid of what they’ll show and I won’t have that fantasy to hang on to anymore. Of course, if they come back showing no residual disease, I can be ecstatic about that result! In any case, I’m in remission for now, and beginning to feel normal, for the most part.

One thing that is not completely normal yet is my thinking processes. Those of you who have been receiving my letters from the beginning remember me discussing the “fuzzies,” a feeling that I could not think well, concentrate on reading, etc. This was really bad after each cycle of the drugs, starting on about day four or so and then slowly getting better over about ten days. It has now been two whole months since my last round of drugs and though I’m mostly back to normal, I still do and say stupid things on an almost daily basis. I feel like an early Alzheimer’s patient sometimes. The other day I was talking to Kathy about putting plant food in the pot with one of our trees. I told her I was going to add some “WD-40” (ein Art Schmiermittel) to the tree‘s soil. I have no idea where THAT came from! Later, when Kathy asked me what kind of lights I was going to put on the Christmas tree I replied, “Flowers.” Those things are rather humorous, but more importantly, there have been a few times when Kathy has had to yell at me that there was a red light (Ampel) or a stop sign at an intersection I was about to drive through. Today I asked Brian about “chemo brain” which is an poorly defined entity associated with chemotherapy. He said it is hard to quantify and diagnose and can last up to a year or more. I will have to be very careful when I go back to work and am taking care of patients again. I don’t want to prescribe any WD-40 for their menstrual cramps. They probably wouldn’t understand.

So what’s next? If the bone marrow biopsy is completely normal we will do nothing except check blood counts about once a month for the next year or so. If the bone marrow biopsy is not completely normal, we’ll probably do the same thing. In other words, we’re finished with any sort of therapy for now. At some point, when/if my white count begins to rise again, indicating progression of the disease, then we’ll see about more therapy.

And what kind of therapy? Brian and I talked about a few options yesterday. One option is to go back to the combination chemotherapy we have just finished using, since it worked so well the first time. However, if the disease comes back after using it once, it’ll surely come back again after a second round of the same drugs. At least I would think it would.

I also inquired again, now that I’m in remission, about harvesting some of my stem cells for use in a possible future bone marrow transplant. Brian again said he’d ask the “transplanters” about that idea, and noted that it had been done before for some other folks. If nothing else works in getting rid of this disease, a bone marrow transplant might be a last ditch option. The advantage of using my own stem cells would that there would be no danger of my body rejecting the cells. The risk of using my own stem cells is that we may transplant malignant cells back into my marrow which were not entirely cleared out during the collection process.

Another very interesting possibility for treatment is coming up real soon. Do any of you out there remember way back to August 1st, when I was discussing some new possibilities for treatment? Remember I mentioned a drug called Genasense (or antisense)? I didn’t think so! Anyway, there is a new drug against CLL cells called Genasense which has recently been developed and is in clinical trials. We’ll be using it here at Kaiser (my health insurance plan, and my employer) within a few months so if/when I need treatment again, that should be available. That’s an exciting possibility. Genasense, by the way, doesn’t attack the leukemic cells and kill them, it just adjusts their internal genetic code so they die when they’re supposed to rather than living almost forever and crowding out all the normal cells, which is how they cause death.

I think I’ve used up enough of your time and paper (if you’re printing these out) so I’ll quit for now. I’ll be back with another update when I get the results of the bone marrow biopsy back. And that may well conclude Book One of my Adventure, as I don’t think much else will be happening for a while other than that I’ll be going back to work over the next couple of months as my white counts rise. But I’ll tell you about that later.

Bye for now,


Wednesday, December 4, 2002

Still Doin' Well, And Antarctica???

Dave’s Great Adventure
Chapter 5, Verse 3
December 4, 2002
Still Doin’ Okay

Well, this “adventure” has suddenly become quite boring, with not much going on, at least as far as the treatment and follow-up of my disease goes. But we’re still plodding along and using our time before I go back to work to see family and friends. But I did have another blood count last week that I’d like to update you on.

But first, in my last letter I reported that my white count was up to over 5,000 and was normal for the first time since we found out that I had leukemia. That prompted a good question from my family in Rock Hill, SC, who asked why my count, at 5,000, was normal, when my count at 5,000, last July after the very first round of chemotherapy, was not normal. The answer is that last July my total count went down from about 65,000 to about 5,000 after the drugs, but the percent of lymphocytes was still about 85%. Now, when my count went UP to 5,000 last week (after the Neupogen injections) the percent of lymphocytes was only about 8% or so. And since all the bad cells are lymphocytes, having a normal lymphocyte count and percentage put me into the definition of being in remission.

Now, a week ago last Monday I had blood drawn again. As expected, my white cell count went down again as the Neupogen effect wore off, this time to 2,100. That’s lower than I had expected, but I guess about what my doc had expected. Now what I don’t know is, that since my neutrophil count dropped so dramatically, but my lymphocyte count remained the same (at 500), the ratio of the lymphocytes to neutrophils and the other cells has now gone back up! Now my lymphocytes are about 23% of my white cells. That’s not normal. So am I in a complete remission now or not? I’ll have to ask my doc next week when I have my bone marrow biopsy.

Speaking of lymphocytes, with the four months of chemotherapy we killed off over 99% of them, dropping their numbers from about 56,000 or more, down to 500! I’m impressed that the chemotherapy could be so specific as to target the lymphocytes accurately enough to do that without also killing off 99% of my red cells, platelets and everything else. And that’s enough technical, medical talk for today!

Hey, I’ve gotten a lot of people asking me the same question: “What, Antarctica? Are you crazy?” Well, I’ve got this great brochure that describes some trips/cruises to Antarctica and I think they sound like a lot of fun. My wife, who doesn’t “do” cold weather very well, remains unconvinced, but I think she’ll go along. Cold is all in your mind. I’ve been reading Sir Ernest Shackleton’s book, “South,” based on his ill-fated voyage to Antarctica in 1914. At one point he notes, in his ship’s log, “Temperature 37 degrees Fahrenheit, pleasantly warm.” My wife does not think that 37 degrees is warm at all! The cruises go to visit penguin rookeries (I guess they’re places where they hatch their young), the old whaling stations in South Georgia, Shackleton’s grave, near the whaling stations, glaciers, ice cliffs and more. And we will get to land on and walk around on Antarctica! I think that sounds neat! How many of you have done that?

Over the last week Kathy and I were able to travel to Oklahoma and Texas, taking our first driving trip in quite a while. In Oklahoma we visited and had Thanksgiving dinner with Kathy’s folks and youngest sister. Then we headed south to visit our daughter Jen, her family and our younger son, Jeremy and his girlfriend. We were able to see my younger sister Deb and her family as well, as they were visiting in town from California just for Thanksgiving Day. They came for the Dallas football game, which Dallas actually won! After a couple of days in the Dallas area with the grandkids (have I ever told you that they are sooo cute!) we headed back north again to see Kathy’s folks again before returning home. While in Oklahoma we picked up a couple of things from her folks. They are moving to a retirement home soon and are downsizing all the things they have collected in their home over the last 35 years so we brought home a cedar chest Kathy’s granddad made in 1938. We also brought back a picture Kathy’s dad had gotten from a prisoner/artist who painted it while in the prison in Anthony, Texas, where Kathy’s dad worked for many years while with the Federal Bureau of Prisons.

This weekend we’ll have some houseguests. Our elder son is coming for a short visit and is bringing along his girlfriend. That’s going to be fun. Jon’s girlfriend, Natalie, has never been to Colorado so we’re going to try to give her a real Rocky Mountain experience. The mountains beckon....

I think that’s all that might be of some interest to you. I’ll be back with another update next week after the bone marrow biopsy and yet another blood count to let you know how I’m doing and what our short term plans are. Until then, this adventure just keeps plodding along.


Wednesday, November 20, 2002


Dave’s Great Adventure
Chapter 5, Verse 2
November 20, 2002

Well, it’s been a week now since my doc told me that my bone marrow wouldn’t tolerate any more chemotherapy and left Kathy and me with nothing to do. We’d been planning our lives around these monthly infusions, so now, while we wait for my bone marrow to recover, we’re left with some open time. Like I reported last time, we’re going to get a couple of blood counts in the next few weeks, plus that ever-popular procedure, the bone marrow biopsy in about three weeks from now.

I need to update some information I sent out in my last letter. I said my white count had gone up to about 2,000. Well, since I have access to the computer with all the data, I looked up my last lab tests. Either Brian misread the numbers or Kathy and I misheard them, but my white count actually went up to over 5,000! Almost all of the increase was in neutrophils, most likely a result of the Neupogen I had been injecting. The net result is that my white count is normal...almost completely normal (except for very low lymphocyte counts), for the first time in many months. We need to see what it does over the next month or so, because as the Neupogen effect wears off, and my marrow recovers from the chemo, the numbers may change. But for now, the counts are normal, and my doc wrote in my chart that I was in “complete remission.”

That term, “complete remission,” is a very nice term to hear, indeed. That means I’ve made the first two cuts in the treatment of this disease. Many of you haven’t been on the DGA mailing list since the beginning, but early on I explained what we were trying to do with my therapy. There is really no known cure for this disease (chronic lymphocytic leukemia). There are various treatments, and they may extend longevity, but there is no cure. However, a very recent study from M. D. Anderson in Houston reported the results of using some combination chemotherapy, the Fludara and Cytoxan, which have been around for years, with a new drug, the Rituxan, which has only recently been approved for use, but was developed for use in treating lymphomas. Lymphomas and leukemias are not the same disease, but they share some characteristics, one of which is that many of the abnormal cells share a common antigen (a particularly shaped portion of the cell wall). In this case, the antigen is called the CD-20 antigen.

Rituxan is actually a mouse antibody against the CD-20 antigen, and allows the body’s own immune system to destroy the abnormal cells. In combination with the standard chemotherapy, the Fludara and Cytoxan, the folks at M. D. Anderson found that there was a much higher response rate and remission rate than with standard therapy. Where a good response rate in the past, with most drugs was about 20%, they were getting up to 90+% response rates with the new combination. And up to a third or more of the folks that responded with a complete or partial remission were negative for disease with some sophisticated molecular testing, about 18 months after the treatment. So, that’s why we were using this very new, and really, almost experimental, protocol. Now, being negative for the disease with the molecular testing (called a PCR probe) is very encouraging. That is not necessarily a cure, but it’s the best anyone has gotten so far!

So, the first test I passed was that I responded to the drugs. Some folks don’t. In some cases, patients with this disease had their leukemias get worse despite the treatment. A few died of their disease, a few died of the treatment! Luckily, I did neither.

Next, at least in the very, very short term (pending my bone marrow biopsy), I seem to be in a complete remission. That was the second test. Some of the folks who responded to the drugs got only a partial response and therefore a partial remission. I seem to be in the fortunate portion of the folks with a complete remission (keep your fingers crossed for the bone marrow results!).

Now, of the folks who got into a complete remission, over half (56%) were negative for the disease with the PCR probe. We won’t be able to do that test (I believe it’s a research tool) but if my bone marrow is negative for apparent leukemic cells, and the flow cytometry fails to find evidence of disease, there’s a good chance that I’ll be in that fortunate group. At least the odds are better than flipping a coin! I’ll take those odds, in a disease that has had no known cure in the past. I’ll keep you updated as more data becomes available.

So, Kathy and I have been trying to find things to do that don’t involve getting into too many crowds of people. Though my white count, for now, is pretty normal, I’m going to be immunosuppressed and therefore be unable to effectively fight off some infections for the next six to nine months. That’s because the lymphocytes we’ve been killing off include mostly the B lymphocytes, which are involved in antibody production. Anyway, in an attempt to get back into a normal routine, we went to church last Sunday, but as I did at the medical meeting in Maui, we sat at the far edge of the congregation, away from the mass of people. Just as in Maui, there was a lot of coughing going on.

It’s really interesting how many people you hear coughing or sneezing when you really, really don’t want to be near anyone with a cold. Kathy and I automatically look at each other in alarm whenever we hear a cough anywhere near us; in church, a restaurant, or a store. And I’ve become very sensitive to touching things that might carry viruses, like door handles, money, people’s hands, etc. I wash my hands all the time and we carry (which is to say, Kathy carries in her purse) a small bottle of the new waterless hand cleaner that kills viruses (it’s mostly alcohol) and we both use the stuff all the time. And I keep my hands away from my face, I keep my fingers out of my mouth, and I don’t bite my fingernails. I really don’t want to catch a cold. My doc says I won’t easily be able to shake it off if I get one. And catching the flu would be a big problem as I wouldn’t be able to mount an immune response to the virus. I didn’t get the flu shot for the same reason; I wouldn’t be able to produce antibodies to it anyway.

So, we’ve been working around the house, doing a little shopping, and starting to get back into somewhat of a normal routine after all these months of living around my chemo cycles. I’ve been able to start working out a little for the first time in months. We have a Nordic Track Cross-Trainer that I was exercising on three times a week up until I got sick last February. I haven’t done anything in months, even when I felt well, because I knew I was going to do more chemo every four weeks and get back out of shape, so I just stopped exercising entirely. Now I have no excuses, so I’m slowly starting to get back in shape.

Kathy and I have had a number of things we were going to do “some day.” Going to Hawaii was one of them. Another was to go to Alaska. We’ve decided that since the future is uncertain, we’re going to start doing those things now. There is a self-guided tour to Alaska that we had been looking at for a number of months, and this week we signed up for it. Next June, presuming I’m still doing well, we’ll be flying to Juneau, Alaska for an eleven day trip. I think this should be a very interesting trip; it includes whale watching, a helicopter ride up to a glacier, a float plane ride out to an island with a large number of bears and bald eagles, a train ride for a day, a whitewater rafting trip, and “flightseeing” with a bush pilot who will take us around Mount McKinley. That should be enough to keep us busy for the eleven days. Next, we’re looking at a trip to Antarctica, maybe next year!!!

Did anyone else get up to look at the Leonids meteor shower last night? Kathy and I got up at 3:00 AM and spent an hour out on the deck in sub-freezing temperatures watching the meteors. It was a pretty good show, but we had partly cloudy skies that obscured some of the meteors, and the quantity of meteors wasn’t near what it was last year. I think I was spoiled by last year’s show, where there were probably a couple of meteors per second, a real meteor “storm.” By comparison, this year’s display was more a like a meteor “drizzle” as we saw perhaps two to four meteors a minute. Still, it was a pretty good show.

I think I’ve gone on long enough for this “verse.” We’re going to try to go to Dallas and Oklahoma to visit Kathy’s parents and our kids over Thanksgiving week. I’ll let you know how our trip goes, and how my next blood tests turn out, in the next exciting verse!

Until then,


Wednesday, November 13, 2002

Chapter Five; Hawaii Was Great, But The Long Nadir....

Dave’s Great Adventure
Chapter 5, Verse 1
November 13, 2002
The Story...Continues??

Well, we’ve gotten back from our trip, and it’s time for another chapter to start, since I’ve been starting a new chapter with each round of chemotherapy. But, I really haven’t finished telling you about the events at the end of Chapter 4. We were getting ready to leave town, I was going to have to give myself those shots, and my white count was very, very low. Well, here’s what happened.

The night of the last “verse” I gave myself the first shot of Neupogen, as I had been taught to do. I didn’t do too badly, though docs are not taught how to give shots in medical school. It was kinda tough to actually stick the needle into my belly, but it didn’t hurt much and I got the job done. We got up at about 3:30 the next morning to catch a flight to LA that left at 6:55. Those of you who know Kathy well know that she always wants to get to the airport early so we won’t miss our flight. Well, we were sitting at the gate for our flight, all by ourselves, by about 5:30. We had plenty of time to eat a McDonald’s breakfast and read the paper! The plane left on time and we had a smooth flight to Los Angeles. I was paranoid about being around too many folks with my white blood cell count being so low, but on the flight to LA the plane was almost empty. We changed planes in LA and headed out to Maui, but this plane was full. Fortunately no one around us was coughing or sneezing too much.

We got to Maui on time and collected our luggage, finding that one of our suitcases had lost a wheel on the flight, so we couldn’t roll it along, but instead I had to carry the thing! But, we got our rental car and found our way to the hotel at which the conference was going to be held, the Maui Prince. It was interesting that, when I asked the clerk at the rental agency how far the hotel was, she gave us the answer, not in miles, but in minutes. That was to be a pattern. Rarely did people express distances in actual distance, but rather in the time it took to get somewhere. That turns out to be, I think, because traffic is very slow and the roads are very circuitous. Though actual straight line distances are not great (the whole island of Maui can’t be more than about twenty miles by thirty miles or so) it can take over an hour to travel twenty or thirty miles.

We checked into the hotel and found that it was very nice indeed. It was right on a soft beach with a gentle surf and lots of palm trees, flowers and birds. We also found out later that there were a lot of large sea turtles in the surf just off the beach. We were able to watch a large turtle one day, just about thirty feet off the beach, with a shell probably about 24 inches across and a head as large as my fist.

The hotel was a beautiful place, and is apparently a popular place for weddings. We must have seen at least five weddings of various sizes, during our stay. Kathy got her fill of checking out wedding dresses! I don’t know why women are so curious about what other women are wearing for their weddings. Anyway, we saw very large weddings with large receptions and music, and very small, private weddings with no one present except the bride and groom and the minister. At one wedding we witnessed, the bride and groom were standing alone on the beach with the minister saying their vows. There was no wedding party at all. The groom was quite a bit shorter than the bride, and so was standing on a small mound of sand to make him appear about the same height as his bride, at least for the photographer!

The meeting, which was the main reason we were in Maui, turned out to be an excellent educational meeting with excellent topics and experts on a wide variety of subjects. I was, again, a bit nervous about being in a large group of people, and the meeting was actually larger than I had thought it would be (about 200 people) so I tended to go in and get a seat all the way to one side of the room, rather than being surrounded by people. There was a fair amount of coughing going on, and I tried to stay away from anyone that appeared to be sick.

I was also restricted in my activities, because of my therapy and low counts. The chemotherapy made me photosensitive, so I couldn’t get much sun. And with my white counts being so low, I couldn’t eat fresh fruits and vegetables nor could I engage in, well, I’m not sure I can say it in a family publication, so I’ll just whisper it (we couldn’t have S-E-X). You know, because of germs and stuff.

Our son-in-law suggested that going to Hawaii with those restrictions was like taking a blind man to a strip show!

But we had a good time, nevertheless. The meeting was set up to run just in the morning and the daily sessions were generally over by about 1:00. That gave us the afternoons to do things. So we set about supporting the economy of Maui. The island is just beautiful, and we spent one afternoon just driving around seeing things and places that my excellent nurse, Debbie (who had lived on Maui) recommended. Then one morning, a day the meetings were held in the afternoon, we went on a helicopter ride around the island. We’d never done that before, and though I rode on lots of helicopters in Vietnam, I generally don’t like small aircraft. They tend to crash too frequently. Plus they tend to be way too expensive. But I have a new outlook on life now, and a different perspective on things. When you’re likely to have only five years left to live, and only that length of time to try to use your retirement money, things look different. If you crash, well, it was probably meant to be, and what is money for, if not to be enjoyed. I’ve been trying to save all my life; now it’s time to try to enjoy some of it while I can.

And one day we went out on a submarine ride. A group of about 20 folks signed up for the sub ride, and we were taken down to about 150 feet to a few coral reefs to see the fish swimming around. We were able to look out the portholes and see the underwater wildlife and take pictures. There was nothing too spectacular, but it was fascinating just to be there.

We went shopping, ate out too often and just had a good time being together. It was rather like a honeymoon, but in reverse, if you will. Generally a honeymoon is when you start your married life. We were there in what, unfortunately, may be the end stage of our married life, but it was beautiful, none the less. We spent a lot of time holding hands and just looking at each other and the soft green scenery. It was good for us.

Next I want to take Kathy to Alaska! Maybe this summer.

Kathy was watching out for me the whole time, guarding me from the dangers all around. She watched what I ate, kept me away from folks who were coughing and did most of the things that required interacting with groups of people. One day I joked that I was going to eat a big bowl of fresh fruit at the meeting, and she got teary-eyed! So I couldn’t eat the fruit! Because of the dietary limits, I ate mostly cheeseburgers and fish and chips, and occasionally other fish meals. And I gained a little weight.

I attended every meeting during our time in Maui. It was good to hear experts telling us that estrogen really doesn’t become a toxic substance to women just because they turn fifty, as many of the lay media would have us believe. And we were taught more about osteoporosis, breast cancer, abnormal pap smears and more. It was the best educational meeting I’ve been to in a long time. And when it was over, we headed home.

The ride home was tough, worse, I think, than the ride to Germany. The plane left Maui at 10:00 at night. Care to guess when we were at the airport? That’s right, we were there at 6:00! There was only one other couple at our gate, and they were coughing, so Kathy took me to the far end of the terminal where there were no other people and we spent time there, reading and talking. The plane left on time, and got to LA about four hours later, at 4:15 AM, where we had to change planes and had about a two hour layover. Then we boarded the plane to Denver, getting here at about 9:30 or so. The reason the plane ride was so tough is the layover in LA. On the flight to Germany, though it is longer, you can sleep. We had no real good length of time on this trip in which to sleep.

Before we went home, I went by the clinic to get a blood count done because my doc needed to see what my blood counts were by the next day before deciding what we were going to do. Then we spent the rest of the day doing errands. And that’s the end of Chapter 4.

CHAPTER FIVE: Yesterday Kathy and I got ready for the next round of chemo. We packed up all the stuff we’ve found we need for those days. Since yesterday was to be a Rituxan day (a long day), Kathy had lunches made for us, I had my CD player and my reading material, and Kathy brought along the quilt we’re STILL working on for Brooke, our younger granddaughter. We got to my doc’s office on time and he got there just a bit late, after making his hospital rounds. Brian pulled up my blood count from the day before, which I hadn’t yet seen, and gave us the news. It was kinda like a good news/bad news, or maybe a good news/good news result. First, the Neupogen worked well. My neutrophils had gone up from close to zero (remember, they were at 200 with normal being 150 to 7500) to 3000; they were back in the normal range. However, my platelets had dropped to 110,000 from 200,000, and my total white count was still only 2,000. Other good news was that my lymphocytes (among which the leukemic cells hide out) had stayed down at 300. The bottom line was that after four weeks since my last infusions, I was still in a nadir! My stem cells, the cells in the bone marrow that create all the other cells, were pleading for mercy! They are pretty well depleted and not able to recover as they had during the first three cycles. As my doc said, “We’ve knocked off so many cells that now we’re just beating the crap out of the good cells!”

So, he is stopping the chemotherapy after just the four cycles I’ve had. I’m not sure what to think of this development. In theory, if we’ve gotten to the point that we’re killing off normal cells, then the leukemic cells, which should be more sensitive to the drugs, should be gone. In theory! On the other hand, if even two or three leukemic cells remain, they can come back. I’ve been happy that we’ve been on the offensive in the fight against this disease. Now we’re going to be passive again. If I can, I’m going to try to talk him into giving me a couple of more cycles later, but I guess we have to be careful...I do need to have some marrow cells left at the end of the treatment.

I asked what we’d do next. Well, we’re going to do another blood count in a couple of weeks, to see if my marrow is recovering, then one more two weeks later, with another bone marrow biopsy at that time. The bone marrow biopsy will tell us if we seem to have cleaned out the marrow. He’s going to have them run a flow cytometry (remember that test from the early DGA letters?) and see if they can detect any leukemic cells. And then? Brian said we’d watch and wait. In other words, we’ll just do blood counts and see what happens to my white cell counts. And if they go up, we’ll have to see what might be available because as of right now, there is no other real treatment.

And so, that’s the end of this verse. We’re going to follow my blood counts for a while and when they get back close to normal I can go back to work, probably some time in December or by early January, at the latest, though Brian said that this time of year is a bad time to go back, with all the coughs and colds and with the influenza season about to start. But, if we can screen out the sick patients, I should do pretty well.

That’s about all for now. I’ll be back if/when anything significant happens.



Monday, November 4, 2002

A Low White Count Supplement

Dave’s Great Adventure
Chapter 4, Verse 4
November 4, 2002
A Supplement

I thought I’d send out just a short update to let you kind readers know what happened to my white count and what we’re doing about it. I believe at the end of my last “episode” I said we’d be getting another white count on Friday (November 3) and see if I needed any treatment.

I had the blood drawn Friday morning, but the lab was having some trouble with their auto analyzers so we didn’t get the results until late Friday evening, just at quitting time. My doc had left work by then, but the counts were roughly the same, but just up slightly. My white count had gone up to 1,500 from 1,100, and my neutrophils, more critical at this time, had edged up just slightly, to 200, still critically low. I was feeling well, and so I waited until Monday to see what we needed to do. Meanwhile we had Kathy’s sisters and their spouses visiting at the house for the weekend. One of the sisters had a little cold, with a scratchy throat and a little cough, so we tried to avoid getting too close to each other during the weekend, and we spent our time sucking zinc lozenges and taking echinacea tablets (do they REALLY do anything?). So far I seem to have avoided any signs of having contacted her virus.

Today I got a call from my doc. He’s concerned that my white count didn’t recover any better than it did, so he wants me to take the Neupogen, the medicine I mentioned to you in the last letter. Neupogen is a growth factor that promotes the growth of neutrophils. It also has to be given by injection, so I had to go to the clinic today to learn how to give myself injections of the stuff for the next five days. It shouldn’t be too awfully difficult for me to do. They fixed me up with all the syringes and needles I’ll need for the five day course of the medicine.

Did I mention that five days of the stuff cost almost $1000! One vial a day, at almost $200 each. Of course, it’s important stuff, since I really need those neutrophils.

Brian said we can still go to Hawaii. There is a Kaiser (the company I work for) clinic not too far from the hotel where we’ll be staying, so I will know where to go for help if I start feeling sick. However, you may remember some of the dietary restrictions I have during my nadir times, right? No fresh fruits and vegetables?? Well, that will apply to me throughout our time in Hawaii since my white counts are so low. So, I’ll be in a tropical paradise, surrounded by fresh fruits and juices, and won’t be able to eat any of them! I guess I’ll just have to have bacon, eggs and potatoes for breakfast everyday.

When I get back I’ll have another blood count done to see if my marrow has recovered enough to get the next round of chemo. There is a good chance that I’ll have to wait an extra week or more before I can have the next round, since my stem cells in my marrow seem to be so depleted right now. I hope we don’t have to wait, but I guess I don’t really want to wipe out my marrow either!

Anyway, tonight I give myself my first shot of the Neupogen at bedtime and then we get up about 3:00 AM tomorrow to catch a 6:55 AM flight to Los Angeles. Then we catch another flight from there to Maui, which will arrive about noon, local time. We’ll be plenty tired by tomorrow afternoon. Temperatures in Hawaii lately have been about 85 (29 C) degrees during the day and about 78 (25 C) at night. Eat your heart out, you folks in Iowa, Colorado and Illinois! We’ll get another letter out when we get back, or within a day or two, and let you know how we did and what we’re going to do about the next round of chemo.



Thursday, October 31, 2002

Low White Cell Counts, and Hat Tricks

Dave’s Great Adventure
Chapter 4, Verse 3
October 31, 2002
It’s limbo time....

My apologies to anyone younger than 30 or older than 60 who has no idea what the limbo is. It was (is?) a “dance” that was popular in the 60s (coming over from the Caribbean islands) during which people tried to get under a stick that was progressively lowered after each try. The DJ at the dance would say, over and over, “How low can you go?”

That’s the question we’re asking right now. I had a blood count done at my nadir, last Friday (five days ago, now), and got the results back Tuesday. My counts, which had been doing okay, have sort of fallen off the edge of a cliff. Actually, my red cell count is still very normal, but my platelets are down to 126,000. That’s sub-normal, but not dangerous. However, my white cell count is concerning now. It has been in the 2,500-3,000 range, low but adequate. Suddenly, it’s only 1,100. And my neutrophils, the “good guys,” have dropped to 100! That’s damned near zero, the way I see it. It looks like my marrow, where the cells are made, is surrendering to the chemotherapy, having been blasted so many times in the last four months! So, because my white counts are so very, very low, Kathy has me quarantined in the house to keep me away from crowds. I’m very susceptible to just about any kind of bacteria or viruses at this point. I also cancelled just about all the work I had been able to arrange in the clinic for the next couple of months. You know, sick people tend to congregate there! I probably shouldn’t spend much time there if I can avoid it.

I don’t really know if I should travel. I’ve called my doc’s personal message number a little while ago and asked about that but haven’t gotten an answer yet. Since I’m still in even more of a nadir, or low point, than usual, I still can’t eat fresh vegetables, fruits, etc. The nurse I talked to at the Oncology clinic also said I need to practice good hand washing, take my temperature if I think I have any signs of a fever, and avoid sex! Well, that wasn’t much of an issue anyway. I guess she’s telling me that sex really is “dirty!”

Hey, I found out where the term “hat trick” came from. None of the sports savvy members of my family came up with any information, but Kathy’s sister Sharon in Bozeman, Montana and her uncle Jim Griffith in Arizona both sent me the derivation of the term. We all knew that is was some sort of ice hockey term for getting three goals in one game. Well, it turns out that before it was an ice hockey term, it was a cricket term in England. It dates from about 1877 and was used to describe taking three wickets off with three successive bowls (whatever that means). This entitled the bowler to receive a hat from his cricket club to commemorate the achievement. By 1909 it was being used in other sports as well to describe getting three of anything in one game. So, there you have it!

So where were you in 1988? Back when my pills were new. Natalie Campos, our son Jon’s girlfriend, wrote in to say that in 1988, when our eldest was starting college, she was starting middle school! I guess the age difference would have made quite a difference then, but means nothing now. By the way, Natalie, my neutrophils are still waiting for those jokes! They didn’t get here in time. (I’m making reference to a line from several DGAs ago in which Natalie had written that she’d tell jokes to my neutrophils since they were “depressed.”)

Our son-in-law Dan wrote to me to suggest that if I in fact elected to die in our home that Kathy could tell prospective buyers that there was a friendly Gyne (Frauenarzt) ghost in the house who would do pap smears for the new inhabitants! Hmmm, I wonder if that would make them feel better or worse!

Our friend Claudia Koetzle in Germany, who lives in the little town of Dettenheim, not too far from Karlsruhe, wrote another nice letter after she and her SF 49ers-loving husband Mike got back from a vacation in southern France. She had written in several months ago after I trashed (schmaehen) Las Vegas to add her comments. She and Mike have been to America several times to visit our wonderful national parks. They’ve probably seen more of them that we have. Anyway, they visited Las Vegas a few years ago and she had to admit that they had walked around taking pictures of the outrageous hotels. The way she so accurately put it, it was amazing to see what could be done in the absence of any common sense and against all obstacles! As an example, all the fountains in the middle of the desert!

I just got a call back from my doc. He’s not too worried about my low counts. He says I can still travel, and that I should get another blood count tomorrow. If it’s still very low, we can try some stuff called Neupogen, a medicine that boosts the production of neutrophils, before I travel.

Well, today is Halloween. There is snow on the ground here as there seems to be just about every Halloween since we moved here. All the little kids who come around for candy are always so cold that most of the Trick-or-Treat-ing is over by about 7 PM or so. Speaking of Halloween, Claudia notes that it’s getting to be a big thing in Germany too, in recent years. Halloween is an American tradition that adults are adopting, as all American are aware. Well, the Americans in Germany brought the tradition to Germany and we often had German kids coming to our door looking for candy on Halloween. In fact, the Americans had a great big Halloween party at the Frankenstein castle in Darmstadt (south of Frankfurt) for many years until it became too, too popular and unmanageable. Well, now Claudia says it’s being promoted by the folks who manufacture costumes and decorations and folks get together in their Halloween garb, drink too much and do stupid things. Sounds like an American tradition, all right!

Kathy just yelled for me to look out the back window. There was a big, beautiful coyote (Steppenwolf) in our back yard. It looked like it was trying to find some rabbits or birds for lunch. In the absence of wild fare, they also start looking for dogs and cats left outside. We lose a lot of small animals in the neighborhood to the coyotes, especially to people new to the neighborhood who don’t realize the dangers of leaving their pets outside.

I guess that is all for now. We will be having company in the house for the next three days and then we’ll hopefully be going to Hawaii, so I probably won’t get another update out until after about November 11th or so.

Bye for now....


Sunday, October 27, 2002

Nadir Time and Old Pills

Dave’s Great Adventure
Chapter 4, Verse 2
October 26, 2002
Nadir Time

Well, I’m in my nadir know, my Ralph (Nader), a pun so stretched that even my English speaking correspondents didn’t know what I was talking about. My nadir is when my blood counts are probably at their lowest in between rounds of chemotherapy. Curiously, I reach my nadir just about the time I start to feel reasonably well after the preceding round of drugs. That’s kinda perverse. I get stuck in the house for days at a time after the chemo, because I feel so lousy, but then when I start feeling better, I’m at my immunologically weakest point and am most at risk from colds or other environmental pathogens (bad germs and viruses). So I really can’t safely mix with crowds. And this is also the time when I can’t eat fresh fruits and vegetables unless they can be scrubbed or peeled, so my diet is a bit limited as well. Oh well, I can stand it.

After the last round of chemo I was, as usual, wiped out for a number of days. Since I can’t go out on the hammock any more (it’s been put away for the winter) I spend a lot of time on the couch in the family room, taking up space and limiting Kathy’s ability to use the room for watching TV, etc. The worst days are usually the Friday through Monday or Tuesday following the drugs. That really impacts on my ability to follow the football games on Sunday! I actually dozed through the first quarter of the Broncos’ game last Sunday, but was awake enough to see them win in overtime against the hated Kansas City Chiefs. Kathy once again brought me some hot wings (Hahnchen Flugel mit pikante Soss!) to eat during the game since that is the time my mouth is most “coated” and less sensitive to mild flavors.

As I recover from each round of chemo I frequently get fooled into thinking I’m stronger than I really am. Many times I’ve gotten up and felt just great, only to find that I’m still pretty weak once I try to get around the house and do something. This happened again last Tuesday but with another, new problem thrown in for good measure.

I got up about 9:00 AM, which is really somewhat early for being just five days out from the last day of infusions. I took a bath, and while in the tub was feeling good; not tired, weak, etc. After I got out of the tub I spent about a half hour dipping water out of the tub with the watering can and watering the plants all over the house (we‘re still in a drought situation here in Denver). This required going up and down the stairs several times. I got a little tired, but nothing too bad. But now my head was hurting some, so I took my usual headache medications, and the headache slowly subsided.

Before lunch my stomach started cramping a little, nothing really bad, but enough to bother me. This has never happened to me before during my previous rounds of chemo. I thought that if I just got some food into it I’d feel better. I felt like getting out of the house by then anyway, since I’d been cooped up for several days, so we went out to a local Chinese food place, and I got a dish of chicken curry. Bad mistake. The cramps got worse and caused a lot of gas buildup! When I got home I started looking for meds to try to make me feel better, but the usual stuff, Mylanta, etc., didn’t do much good. The mild cramps continued through the afternoon and into the evening, through a fairly bland dinner. We went to bed about 10:00 PM and I was still cramping, but I didn’t know from what. The cramps kept up through the night and I could not sleep. In desperation I rummaged through the medicine cabinet to see what I could find. I came across a bottle of Donnatol! Just what I needed! Donnatol is a combination of belladonna alkaloids and phenobarbital, and is specifically made to stop abdominal cramping. The bottle said it had been dispensed in 1988! Really, 1988!

Where were you in 1988? In 1988 I was driving a snazzy green Porsche, our eldest had just started college in El Paso and we were living in Stuttgart, Germany. Ronald Reagan was president and he still knew his name. We’d never heard of Osama bin Laden or al-Queda, and for that matter, we’d never heard of Bill Clinton (God, to be able to go back in time!). These pills had made several moves with us, for some reason, from Germany to El Paso and then to Colorado.

I looked at the pills and looked at the date on the bottle. The pills looked okay, I mean, they weren’t brown and crumbly or anything. I looked at them again, looked at the date on the bottle, and then looked at the time. It was four in the morning and my belly was hurting. I took the pills. They worked and I finally got to sleep.

I guess I really ought to replace those pills, huh?

You know, I guess I must be doing okay. Whenever I see friends or colleagues whom I haven’t seen in a while, I always get the same greeting: They always say “You look GOOD!” almost in surprise. I think most folks that go through chemo lose a lot of weight and hair, but since I’ve maintained my weight with a diligent diet of frozen custard, hot wings and nachos, and since most of my hair is still in place, I suppose I don’t look like the average chemo patient. And that’s okay.

Last Friday evening, just as I was getting into my really low point, some old friends came through town. Alta Bailey and her daughter Kristen came through Denver en route to Utah where they were going to visit Moab, the Arches and more. (Our friends from Germany, the Koetzles, have been there and have been encouraging us to go too, but we haven’t made the short trip out there yet.) Anyway, Alta’s husband, Don, and I were first cousins, once removed, and were the family’s genealogists. We spent a lot of time digging up family roots and traipsing through cemeteries looking at old gravestones, filling out the family tree. Sadly, Don died a few years ago of pulmonary fibrosis but we’ve stayed in touch with Alta. We went over to their motel to visit but after about ninety minutes I was just too tired to be able to follow the conversations, so we left and came back home. It was nice to see them however, even if for just a short time.

In just my most recent letter I was thinking about end-of-life scenarios and wondering what I should do. I mentioned, briefly, “Perhaps a hospice?” Well, wouldn’t you know, two days later I got a letter in the mail from the Denver Hospice Association asking for donations. Man, what a network they must have!

I want everyone to know that I’m STILL getting cards everyday from my friends at work. And when I can’t get a card because of a weekend or holiday, our friends the Henefelds make sure I get an e-card. Joan Henefeld is sticking to her “mantra” of sending daily good thoughts and wishes and my wonderful nurse, Debbie, is right behind her, even though she’s got five kids to care for. And then I get a card or two every week from other folks too. I have the absolute BEST co-workers.

I was going to try to get in to the clinic to work a couple of days next week but I’m having trouble doing so again. They may not be able to accommodate me on the days I could work, because they don’t have enough nursing help (male gynecologists are labor intensive as we require an attendant, or “chaperone“ for just about everything we do), so I probably won’t be able to work again next month. Oh well, I’ll just burn a couple more sick days.

So, until later, I’ll put this letter “to bed” and get it into your e-mail in basket!


Wednesday, October 23, 2002

Chapter4 Four; Planning the Rest of My Life

Dave’s Great Adventure
Chapter 4, Verse 1
October 17, 2002
About Halfway...

I just sent out a DGA today that I started last week, but I thought I’d start the next one before I get too fuzzy. There is a phenomenon called “chemo brain” (really!) that affects your memory, long and short term, I guess. I just thought I’d tell you about the last few days of chemo while it’s fresh in my mind.

First, the good news about my blood counts. I had more blood drawn last Monday, four days ago, as we always do before starting a round of drugs. As before, my good guys are holding their own. My red cells and platelets are still normal. My white count is up a little bit to about 3,100, but the increase is almost entirely in greater numbers of neutrophils, the bacteria fighters, and not the lymphocytes, which can be the bad cells in this case. All the bad guys, the leukemic cells, are lymphocytes, but not all lymphocytes are bad guys, of course. But for now, the count of lymphs is staying stable and therefore my percentage of neutrophils is edging up toward normal. For those of you interested in medical minutia, we normally have about 85% or so of our white cells as neutrophils and about 10% or so that are lymphs. When I started my therapy, I had about the opposite ratios; about 89% lymphs and only about 10% neutrophils (if you’re wondering, the missing percentages are made up of other white cells called eosinophils, monocytes, basophils and a few other odds and ends). My neutrophils are now up to about 60% of the total white cells (though their total numbers are still depressed to low but normal range numbers; Natalie, they need more jokes!).

So, we started Round Four. This about marks the halfway point for me, in this chemo stuff. I’ve completed and recovered from three rounds so far and have to recover from three more plus a round, I guess, of Rituxan alone, though I’m going to try to talk my doc into giving me another full round of chemo in January if my marrow is still in good shape. I want to blast the disease as hard as I can this first time, and hopefully not give it a chance to come back!

When I went in for the drugs, I was seated next to my partner, Laurel, who has the breast cancer that has spread to her lungs and liver. She seems in amazingly good spirits and was writing thank you notes to folks who had brought food over to the house when she had to go in for more therapy. She actually was in the hospital for a day when they found the disease had spread. She was having trouble breathing because of lymph node involvement. This has gotten better since her first round of the new chemotherapy she’s getting, Taxitir, I believe. It’s a synthetic form of the older drug, Taxol, which is derived from yew trees. Laurel and I talked for a while until they gave me my premedication, at which point I turned on the CD player and went to sleep.

This turned out to be the longest course of chemo yet. For whatever reason, the Rituxan (another $1500 worth) took a long time to infuse, about three hours or more. And that was after the infusion of the premedications, and before the fludarabine and cytoxan went in. It wasn’t all that bad for me, I was in a recliner (though it is an industrial strength hospital recliner, not a real soft home-style recliner). Kathy, on the other hand, spent the whole time watching me sleep through the infusions in a straight back hospital chair. She had a sore butt and a headache before it was all over. She helped pass the time by reading and doing cross-stitch on a quilt we’re doing for Brooke, our latest granddaughter.

The last couple of days of chemo have been no problem. The IVs have gone in my veins easily and the cytoxan and fludarabine go in over about an hour. No sweat! I have been feeling a little sleepy over the last day or so as the chemo effect sneaks up on me so I pretty much slept through the short infusion today, listening again to Kent’s “One Quiet Piece After Another.”

I have to say, as much as I like the staff at the Hematology-Oncology clinic, there have been a lot of potential medication errors, with me getting incorrect doses of pre-meds, until I ask why, with the nurses asking ME what I am supposed to be getting, asking ME why the dose of Rituxan is changing, etc. We’re using a very new regimen of drugs, but the protocol is in my chart. Maybe they’re asking me these questions because I’m a doc, rather than asking my doc, because they expect me to know (as I do) but if they ask these questions of an average 75 year old leukemic, the patient likely would have no idea what was going on. Yesterday I got shorted on my steroid pre-meds. That’s not the first time my pre-meds have been wrong. But I was only short 4 mg of the 16mg of dexamethasone I was supposed to get so I didn’t worry about it.

Today after my infusions, I had an appointment at the eye doc’s office. I hadn’t had an eye exam in three years! She went over my eyes real well and I’m happy to report that at least my eyes are in good working order. She changed my contacts prescription and now I’m cleared for more astronomy nights!

I recently heard from our friend Cindy (Chitwood) Hunt, in El Paso, who’s been a friend of the family since she and our daughter went to junior high school together. She was commiserating with me on having to go to the bathroom so often during my chemo treatments. You see, she understands what it’s like. Cindy suffers from a “rare medical condition” called TWB. It is a hardship for people like Cindy who have Teeny Weeny Bladder as they have to pee all the time. We know! Cindy came to Europe to visit with us a couple of times while we were in Stuttgart. We went camping across England and Scotland with Cindy and made a lot of potty breaks! Now she thinks I should have been more sympathetic.

October 18

We also heard from Jane Forte up in Iowa who thinks it’s just “too bad” that we have to go all the way to Maui for an educational meeting. Actually, that wasn’t my first choice at all. But I needed to get some Continuing Medical Education (CME) credits before the end of the year. Like all professionals, whether they be lawyers, teachers, nurses or physical therapists, I am required to get continuing education each year to maintain my license to practice. I had to cancel a meeting we had planned for last March when Kathy and I were both sick, so I was scouring the web sites listing medical meetings that would fit into my chemo regimen, allowing me to travel during my “good “ week, the week before my next round of drugs. There weren’t many. I could have gone to a course in embalming the female cadaver (but that REALLY didn’t interest me) or a few other weird courses, but then I found this course in obstetric problems, something I was really interested in. To make it even better, it was sponsored by the same folks that had put on the meeting last March that I had to cancel (for which I forfeited a large deposit). They would give me most of my $550 deposit back if I registered for another of their courses within a year, and American Airlines would give me credit for the cancelled plane fare too. So, you see, we HAD go to this meeting! We get credit for our fees we already paid, the company picks up the majority of the tab anyway, Kathy has always wanted to see Hawaii, and I really need to get a meeting done before the end of the year for licensure reasons.

I also heard from my step-brother/cousin Tom Lee in Atlanta recently. He says my reports are his main source of reading material and it had been so long since my last letter that he was afraid that he’d have to go to the library to get a book. I mentioned in the past that Tom was my step-brother/cousin. I thought surely someone would write in to ask me about that curious relationship. He always adds to his notes (when he signs off that way), “Are we from Alabama?” He also noted that you know you are a redneck when you go to family reunions to meet girls!

Actually, the explanation, which many of you already know, is very simple. Tom’s dad, Lloyd Lee, married my Mom’s sister Marian. And Lloyd and Marian were attendants at the wedding of my mom and dad. My dad died (of this same leukemia) in 1981, and Lloyd and Marian came down to San Antonio several times to visit mom after the fact, as they had doing for many years anyway. When Tom’s Mom (Lloyd‘s wife), Marian, died in 1989, Lloyd and my mom spent a lot of time together, and finally decided to get married. It has been a wonderful thing for both of them.

While I was growing up in Texas, my family often visited Lloyd and Marian during the summers up on their farm in Iowa, near the small town of Letts. Tom and his brother Dick, were older than me and I’d hang around with them as they went about the farm chores. I was a city boy and was fascinated by all the things they were doing. One time I asked, when I was about 12, if they could teach me to drive the tractor. They said sure, and showed me how to start the motor and get it in gear. Shortly thereafter we were down in the fields and they needed the tractor and wagon brought down to where they were. I quickly volunteered to bring it, using my newly acquired driving skills. I ran up the hill to where the tractor was standing, proudly started it up and got it going down toward Tom and Dick, and Lloyd too, I believe. It wasn’t until I got down to them that I realized they hadn’t told me how to stop the silly thing! I circled around and around as they tried to yell instructions to me until one of them came alongside and jumped on to get it stopped. I didn’t drive again for a long time.

Today I’m wearing my “fat pants.” Kathy found me a pair of jeans on sale at Target for $10 that are two inches larger than I usually wear so I can be comfortable during the times I get big on the steroids. I hope I don’t get TOO comfortable in these. I usually try to make my body fit my clothing, rather than getting clothes that accommodate to my enlarging body.

You know, it is so difficult to know how to plan the rest of my life right about now. Since I really don’t how long the rest of my life is going to be (of course, do any of us, really?). I still don’t know what to do about retirement, work, etc. I really would like to be able to retire before I check out, and could probably do so if I start getting into my retirement funds now, but if I do that, and then live for another fifteen years, I’ll be broke! I’d probably have to go back to work! What a cruel trick that would be! In addition, this is a particularly bad time to be accessing my retirement funds as they’re all in the tank. They are all in stocks or bonds, most of which are ‘way down right now. I’d be like the brother of another colleague at work whose brother has a brain tumor he’s been fighting for a number of years. He didn’t expect to live as long as he has, so now he has no job and no money. What to do? I really think I’ll keep working for the near future, at reduced hours, until we see how this treatment, or whatever treatment we go to next, does. If it looks like we’re reaching the end of the line, then I’ll retire to see if I can enjoy my last few years.

But if I don’t work, I will lose out on several things (not counting the pay and benefits). The main thing will be the contact with my patients and colleagues. My work, is to a large extent, who I am. If I’m not working, at least a little, then I’m just that retired guy down the street who’s got leukemia. I enjoy the contact with the folks at work, I really do. And I personally love the feedback I get from my patients. One of the best things about what I do is that I sometimes really think I make a difference. There are moms out there who are alive because of what I’ve done, and kids who would not have been born alive except for my interventions. I’m happy about that, and am proud that I could help folks so often.

I also wonder about end-of-life scenarios. Leukemics don’t usually die sudden deaths, so there will be time to decide how and where I want to spend my last days. I’d like not to be in an ICU with all kinds of monitors beeping, all by myself, coated by fluorescent light, dying alone at about 3:00 AM (as many critically ill people do, for some reason). I read an article recently about a woman here in Highlands Ranch who was dying of breast cancer. Her final wishes were to die at home, with her husband holding her face in his hands, and she wanted her life and death to be meaningful. I think that is kind of what I’d like, but on the other hand, I don’t want Kathy to remember our bedroom and our bed as the place I died. Plus, many home sales contracts ask if anyone has died in the home. I guess some folks are afraid of ghosts or something. My dying in the house might actually make it more difficult to sell! What to do?

Planning one’s death also is not that easy to do. The scenario above, about dying with your face held by your spouse, is a great sentiment but is not easy to schedule. When you’re dying of cancer, your last days are not good days for you or your family. Generally the patient is only semi-conscious for a number of days before the “terminal event.” You wouldn’t have the opportunity to say, for example, “Come here, dear. I see the light coming to get me!” And making the family stand guard over you for days, watching you die by degrees, would not be a good thing for the family, especially when you wouldn’t even be aware of their presence. My Mom can attest to that, as she visited my Dad for days just before he died, times when he didn’t know where he was or what he was saying. Then he died in the early morning hours when Mom was at home and he was alone!

Maybe a hospice?

October 23

I faded rapidly and deeply after the above and have been away from the keyboard for several days. I think this installment is long enough, so though I have more stuff to pass along, I think I’ll get this into cyberspace and into your mailboxes. We got a touch of winter today, with some snow flurries. I’ll tell you about it next time.

I should mention, though, to ease your fears of viruses, that I wrote to the Yahoo folks a couple of times (they bought Prodigy recently) complaining that I was being impersonated and that someone was sending out viruses in my name. Their response basically was that “technically” they couldn’t stop anyone from impersonating me, and left the impression that they couldn’t or wouldn’t do anything. We had been getting four to eight returned messages a day, bounced back from inactive e-mail addresses, with virus-laden attachments (which Doctor Norton was taking care of for us) but since I complained to Yahoo the second time, they have stopped completely! They never said they were going to do anything, but I’m guessing that “technically” they actually had the electronic power to reach out to someone and get the impersonation to stop, be blocked or whatever. Now those guys are probably using some other poor schmuck’s e-mail address, from their electronic mailing list, to send out their evil messages. But at least I don’t need to worry about them for now, and neither do you.

Enough for now. I’ll be back in a few days unless you’ve had enough of this stuff and hit the delete button when you see my name in your in-basket!


PS--No one ever wrote in to tell me what a “hat trick” was, or rather, where the term came from. Does anybody really know?

Saturday, October 12, 2002

A Little Astronomy, Medical Meetings, But Some Bad News, Too.

Dave’s Great Adventure
Chapter 3, Verse 4
October 12, 2002
Things are looking good...

Hello again. It’s been about ten days since my last “verse” went out...the longest I think I’ve gone without putting out an update. The reason is that I’ve actually been quite busy since the last edition. I have been feeling quite well, overall, and have been very active, perhaps too active.

Last week I went to see the nose doc again. She showed me the CT scan films and told me what’s going on. It turns out that I have a partially obstructed right maxillary sinus and that’s causing my problems. She said it’s not a big deal, but that we could do surgery on it if I was interested. It wouldn’t be a big surgery, but still I’m not in the mood to have surgery at the present. In addition, she’s not too interested in operating on my sinuses when my white count is down in the 2,000 range. So we agreed that I’d keep treating myself with decongestants and intermittent antibiotics for now, and consider the surgery after I have finished my chemotherapy and my immune system is in better shape. So, Sudafed has become one of my major food groups as I try to keep the sinus from getting congested and causing pain, which then often triggers a migraine headache!

Last weekend I was feeling so normal that I went out to the prairie for “new moon.” New moon is, of course, when the moon is dark and that is the best time to do astronomy. So I drove the 110 miles (170 km) out to the Pawnee Grasslands, a federally protected area about thirty miles east of Fort Collins. Way out there, we are able to get away from the light pollution of Denver and its suburbs. I was able to put my telescope together without help, though it was a bit of a struggle. The tube (11 inch diameter) weighs about 46 pounds ( 20 kg) and I have to lift it off the ground and mount it on a four foot tripod. This is not generally a problem, but I’m somewhat weaker than usual these days. Nevertheless, I got it set up and calibrated and was able to look at a number of fascinating galaxies and nebulae during the course of the evening. There were no planets to see at this time of the year; they’ll be visible later in the Fall. I tired faster than usual (no surprise there) and took everything apart and left for home about 10:30, instead of my usual 1:00 AM or so.

The next morning I was tired and overslept, so we didn’t make it to church. I did get up in time to watch football. My guys were playing the previously undefeated San Diego Chargers and did a good job of keeping their offense in check, handing them their first defeat. I found that I was quite sore on Sunday; my muscles were protesting their abuse the previous night out on the prairie. Not only were my arms sore from manhandling the ‘scope around, but my neck and back were sore from all the stooping and bending I had done in looking into the eyepiece all night. When you do astronomy you assume some unusual postures during the course of the evening.

During this week I have been working and attending medical meetings. I have been needing to get some medical education meetings completed as I need them for my medical license. Our organization put on a very good all-day meeting last Tuesday on the subject of breast cancer. We had excellent lectures on the causes, detection and treatment of this disease. Unfortunately, at this meeting I learned that one of my colleagues is now terminally ill with breast cancer. I mentioned last July that a colleague who had had chemotherapy for breast cancer told me I might feel “fuzzy.” This colleague was actually working in my place in our clinic for several weeks last July through October to help while I was absent. We just found out that Laurel’s breast cancer has spread to her liver and lungs.

This is very sad. Laurel had married a little on the late side, and then was unable to have children. While going about treatments to try to get pregnant, she found she had the breast cancer. But she went through surgery and radiation and was thought to have been cured, so she adopted a little boy and girl. Then the cancer came back, and now it has spread beyond treatment. Very sad.

I worked in the clinic two days this week, Wednesday and Thursday, and was able to see a large number of patients. I was really tired at the end of the day each time, but it was nice once again to be with my partners and the staff in the clinic for a couple of days. I was even frisky enough for a while to get into a water gun fight with a couple of our nurses. But, I paid the price. I was very tired when I got home.

Friday I went, regrettably, to another medical meeting. I say regrettably because it was probably the worst medical meeting I’ve ever gone to. It was entitled “Journey Through the Circle of Life; A Perinatal Loss Conference.” With that title one would expect that it would be a conference studying the causes and prevention of pregnancy loss. But it was, instead, eight hours of “touchy-feely” lectures about what the various speakers thought about the topic. Very little data was presented. It was supposed to “raise our awareness” of the topic! Please! When you have nurses and docs at that type of conference, you can be absolutely certain that we are, indeed, “aware” of the problem. One lecturer suggested we all light candles at 7:00 PM this Thursday night to help raise our awareness. That kind of bullsh*t has no place at all at a “scientific” meeting. Oh well, I guess it beat working for the day.

We have been having an absolutely spectacular Fall here in the Rocky Mountain area. Our days have been sunny, in the 70s, and the mountains have been getting some snow. They look so beautiful and white against the bright blue skies. And all our famous aspen trees, the ones I curse at when they try to sprout in my grass, are now a brilliant yellow, adding to the beauty. We’ve had a few days of rain, not enough to break the drought, but every bit helps. It is actually a little late in the year for us not to have had any snow here in Denver. Generally we start in September some time. It will come soon enough, however.

I have mentioned several times that I frequent on-line auctions from time to time. Well, with my extra time on my hands I’ve decided to become an entrepreneur as well. I’m now selling (a very few) things on eBay! I have collected a number of old coins during my years of collecting and have a lot of extras. I decided to try to see if I can sell them. The answer is that you can sell anything on eBay. I started out small, auctioning off three coins and getting over $300. That doesn’t really mean I MADE $300 though. I lost $50 on one coin, made $40 on another and I forgot what I paid for the third one several years ago. But it‘s fun to do. If this goes well, I’ll sell some more after I’m over my next round of “fuzzies.” I’m not at all sure what the tax implications of all this are, however. I don’t want the IRS (steueramt) to come after me looking for unpaid taxes!

I think my brother Douglas, the professor out in Rock Hill, South Carolina, may be right after all. At least to some extent. I do seem to be getting fat. The weight I gained hasn’t all melted away like it’s supposed to during the past couple of weeks. I’m down to about 178 or so, but still about 4-5 pounds more than my usual weight. That means I’ll likely be over 190 when I get the next course of treatment! My hair is starting to fall out again; it’s been almost four weeks since the last round. It doesn’t fall out by the handful, like some people experience. It’s more like a dog shedding in the Summer. It just falls out faster than normal. You still can’t really tell by looking, except that the part in my hair is a bit thinner. You mostly can tell by feel. Kathy and I can tell, but most folks generally don’t run their fingers through my hair, so they don’t know. We’ll see what it looks like at the end. I’m only halfway through this stuff, you know.

Let me mention a couple of other things I got for my birthday. A couple of days after the date we received a registered letter from Germany containing coupons for flowers at any FTD/Teleflora shop. It had been sent by our dear friends, the Galla relatives. The accompanying card had five bears wishing me a great birthday, in German, of course. And they had written that the five “Galla bears” sent their greeting. Well, at the FTD shop, the clerk looked at the coupons and said she had she had worked there for 24 years or something, and had never seen such a coupon. So she called the central office in downtown Denver, and they weren’t sure what to do with them or how to exchange them. So she called someone in Dallas, or somewhere in Texas, and found out how to make the exchange. While she was doing all the phone calls we were looking at their displays and found what we thought was the perfect flower arrangement. They had a “Happy Bearday” basket with a stuffed bear in a “Happy Birthday“ shirt, so we opted for that as my gift. It was perfect.

And our friends the Henefelds, hearing about my need for spicy food, bought me a couple of different bottles of “Dave’s Gourmet Insanity Hot Sauce.” The instructions warn that
you should use the product only one drop at a time! They also picked up a T-shirt from the company with “Dave’s” on the back. To add to my collection of reading material, they presented me with a book of writings by Baxter Black, the “Cowboy Poet.” Now I have even more stuff to read at bedtime and to keep Kathy awake as I laugh while reading. Funny stories!

Last Tuesday morning, the day I went to the breast cancer meeting, we had to get up quite early as I had to be downtown before 8:00 AM. Kathy got up, too, to get breakfast, and was going down the stairs in the dark when she missed a step. She ended up on the floor with a badly sprained left ankle. I didn’t know about it until I came downstairs after my bath. She had a huge knot on the side of her ankle about the size of an egg! I had to leave shortly, so I ran up the stairs to find a wrap for her ankle, got it wrapped up securely, gave her some ibuprofen and we put ice on it. Then I had to leave my crippled wife all alone. I took the cell phone with me and called a couple of times during the day to make sure she was okay, and she was. She’s doing well now; her ankle is a bit sore and swollen, and has turned a lovely shade of blue and yellow with green “highlights” but is not bothering her too much at this point.

Since it’s now five days since I started this, and have been delayed in sending it out by the virus scare, I think I’ll just hit the send button and get it on its way. I’m doing day three of my fourth round of the chemo and I’ll tell you about how that’s going, and more, soon. Though, I might have to wait until I’m past my “fuzzies” which I think are already sneaking up on me.

Until later,


Wednesday, October 2, 2002

Recovering nicely!

Dave’s Great Adventure
Chapter 3, Verse 3
October 2, 2002
Not so bad....

Well, I’m into week three after round three of the chemotherapy. I think I’m recovering faster from this round than I did the second round, and I didn’t expect that. I think I mentioned that a friend’s mother had had Rituxan for her bowel lymphoma and seemed to be having increasing weakness with each cycle. I feel close to being back to normal already. I hope I’m not jumping to conclusions too soon, ‘cause I don’t want to be disappointed by getting sick again before the next round, which will start on October 15th.

I had my blood count done a couple of days ago and things are still going well. My white count is now down to 2,400, and my lymphocyte count is down to 500. Still, the things I need remain in the normal range; my red cell count is about 41%, my platelets are back up into the normal range and my neutrophils are still low, but in the normal range at 1000, which is the very bottom of the normal range. I think my neutrophil count is the limiting factor for getting more chemotherapy. If the neutrophils are less than 1000 when it’s time for another infusion, I think we have to wait until they’re back up to at least that number to restart the therapy. They should recover somewhat between now and the time for my next treatment.

I heard from my brother Doug in South Carolina. With all this talk about Mexican food, chicken wings, nachos, frozen custard and the like, he thinks I must be getting awfully fat. Well, yes and no. I mentioned that I do gain a lot of weight with each round of therapy, but so far it seems to melt away before the next cycle. Some of the reason I’m eating so much is that steroids can boost one’s appetite, so I feel like I NEED to eat more for a while after getting the drugs. It doesn’t last the full four weeks, however. I’m generally about 174 pounds, get up to close to 190 after the chemo, but now I’m back to about 180. We’ll see where I am when it’s time to start again on the 15th.

And my son-in-law wrote in to disabuse me of the notion that our kids thought we were asexual. He says that we gave ourselves away by sending them out with money and telling them not to come home for lunch on many occasions when I was home after a night of work. Or when we sent them to the neighbors to play for the afternoon. And we thought we were being so clever!

The last time I saw my doc, I asked him if we could collect and freeze some of my bone marrow for possible future use, if I achieved a high-grade remission. My thought was that, come next year, if things look relatively normal, we could collect the marrow to transplant back into me if/when my remission fails. He said he’d ask his “transplanters” about this possibility. There is a certain amount of circular reasoning in even thinking about this possibility. If I achieve a high-grade remission, there might be reason to think that I might be “cured” and wouldn’t ever need a transplant of bone marrow. If, on the other hand, we collect the marrow, just in case, and my remission fails, then there might be good reason to believe that the marrow would likely contain leukemic cells which we would be transplanting back into me, “reinfecting” me, if you will, with bad cells. This is a logical conclusion, but what makes it worth thinking about is that as the bone marrow is collected, it can be treated with anti-leukemic drugs, at high concentrations, to try to clean it of any residual bad cells. We’ll see what Brian’s “transplanters” say about this as we get further along in this process.

This time that I have been off work has been an interesting introduction into what it might be like to be retired. I have heard of a lot of couples who really didn’t like it at all when the husband retired and was hanging around the house all the time. But, at least in the short term, Kathy and I have had no problems at all being around each other all day every day. It’s even been fun when I wasn’t too sick to interact with her. We’ve played card games, gone to movies, gone out for lunch or dinners, and just watched TV. When I can be off, and be hopefully healthy, for longer periods of time, we plan to do some more traveling. That’s probably our favorite thing to do, other than spend time with the family.

And speaking of retirement, since I now am kinda “stuck” here (there are certainly worse places to be “stuck” than Colorado) and can’t retire, because I need the benefits, I’m going to see if I can get the bosses to let me create a “retirement job” for the last few years I work with Kaiser. I had hoped to move to New Mexico in a couple of years and get a job doing pap smears or something, but now that’s not an option. So I’m going to see if I can modify my job to less hours as the next few years go by, with less of the things that cause stress in the job, like some of the surgery, hospital rotations and such. I haven’t approached them about this yet, but will be writing them a letter in the next month or so with my requests. Hopefully I can modify my job but still be an effective worker for the department. We have a large enough group of gynecologists (about 40) that I think they should be able to accommodate my wishes and not hurt the department.

I don’t think I’ve told you about my “aviary” at my work place. Last March, shortly after I got my diagnosis, and was mired in a deep depression, a small blue glass bird appeared on my desk. Like a “bluebird of happiness.” I didn’t know who had put it there, and asked just about everybody in the clinic if they had put it there. No one confessed. It turned out that Joan had put it on my desk before leaving work the night before, but wasn’t in the office when I was asking all my questions about it. Well, all the questions I was asking got other folks in the office to thinking about birds, and slowly, one by one, more birds began appearing in my office; glass birds, plastic birds, plush birds, birds that sing, origami birds and more. So I started hanging the birds around my office. I now have about ten birds hanging from the ceiling, more on the bookcase and several on my desk. The replacement doc who’s taking my place has been a good sport about working in my “aviary,” and in fact has added to it. Last week I found that she had found a large plush flamingo to add to the collection! My office is certainly unlike any other gynecologist’s office that I’ve ever seen. But that’s okay.

I’m so glad to be doing the chemotherapy. Before I started, I felt like I was just waiting for the disease to eat me up from inside. It was depressing to keep watching my white count get ever higher every time we checked it. Now that we’re finally doing something, and it seems to be getting positive results, at least in the short term, I don’t feel so much like I did, like “yesterday I was living but now I’m dying.” Now I’m starting to think about the future again. I’m trying to make plans for more than just the next few weeks and I actually feel like I’ll be around for more than a few months to years. Kathy and I are planning to go to Maui in November, if my doc will let me travel, to attend a medical meeting. I haven’t been able to go to a medical meeting all year because of my illness and therapy, but now I think I’ll be able to do so. I need to get some educational credits to maintain my medical license and where better to do that than in Maui? And we’re starting to plan a trip to Alaska next year. We’ve always wanted to go but never made the trip. Hopefully this summer will be the time. It’s nice for me to be able to think like that again.

That’s about all that’s newsworthy for now. I’ll get this out and report back in a week or so. I’ll be working again for a couple of days next week, and will be going to a couple of all day educational meetings, so we’ll really see if I’ve recovered as much as I think I have. And that will lead up to the next round of chemo! Until then....


“To laugh often and much, to win the respect of intelligent people and the affection of children,
To earn the appreciation of honest critics and to endure the betrayal of false friends,
To appreciate beauty, to find the best in others,
To leave the world a bit better whether by healthy child, a garden patch, or a redeemed social condition,
To know even one life has breathed easier because you have lived,
This is to have succeeded.”
Ralph Waldo Emerson
(This was in the bulletin of at the funeral of Angie Smith, whom I mentioned a few weeks ago; it was “Angie’s Creed”)

Thursday, September 26, 2002

A Long List of Side Effects

Dave’s Great Adventure
Chapter 3, Verse 2
September 21, 2002

First a note to those of you on Hotmail, WebTV, MyMailStation and the folks in Orange, Texas. Attached to my last message was a cartoon that you didn’t get. I got a number of messages back saying they were too big for your server, or something. And, of course, the MailStation and WebTV folks can’t get attachments anyway. But the cartoon went as follows: (1) Person lying in bed, thinking, “Lots of fluids, lots of rest...lots of fluids, lots of rest... (2) Opens eyes, saying “Yeesh” (3) Gets out of bed saying “I’m trying to follow that prescription...” (4) Heading toward the bathroom, says “But one keeps interfering with the other.” That seemed appropriate for my current instructions!

After day two of the infusions this week, I went home feeling pretty well. That was a good thing as we were to have guests that evening. Kathy’s little sis, Kristy, and her friend, Kerry, came in from Oklahoma City, on their way to a conference at Keystone Resort, in nearby Breckinridge. They arrived during a much needed rainstorm, but had no trouble finding their way to our home. When they left Oklahoma City it was in the 90s and so they were dressed in shorts. It was in the 40s when they got out of the car here. Welcome to Colorado! We had a nice visit with them, and then they offered to take us out for dinner, an offer we rarely refuse. We went to a nearby Italian place many of you locally know, Bisetti’s, where we had a great meal of more than any of us could really eat. We took home four boxes of food.

Kris and Kerry were tired from their trip so went to bed soon after dinner, as did we. We all slept in a bit late the next morning, but were up in time to plan a breakfast together before we headed out for my next round of chemotherapy in the morning. The local wildlife put on a good show on the deck for our guests, with the magpies and scrub jays coming in for their handouts and our “pet” squirrel “Stubby” dropping by to be handfed out on the deck before we left. After feeding the birds and squirrels, we decided to take Kris and Kerry to the place we’ve been going so often recently, our Mexican place, El Tejado, since it’s on the way to the clinic anyway, and it would also be on their way out of town. It really is not very close to home, probably being about ten miles from here, but since it’s right on the way downtown, it’s been getting a lot of our business lately!

The Mexican breakfasts we had were filling, as usual, and after we finished we sent our guests on their way to Breckinridge, with a stop planned at the Denver Mint for a quick tour. We headed for the clinic and found ourselves there quite a bit early. But for some reason, the folks at the chemo

September 26, 2002

I tried to get a letter out late last week but was just too tired and fuzzy to make sense. And my writing wasn’t very scintillating either, so I quit. I’m just now getting back to where I can really string my thoughts together coherently. Probably most of you were grateful not to be getting any spam from me last week, but occasionally I worry folks when I’m away from the keyboard too long.

To continue where I abruptly left off above, the folks at the chemotherapy clinic were running ahead of schedule as a few patients hadn’t shown up (how DO you forget your chemo appointment?) So they got me in early and we were able to get done early. The IV went in okay this time; the nurse, one we hadn’t seen before, named Barb, cheated and put it in the same puncture site from a couple days earlier. Usually they use new sites each time so as not to scar any one vein too much. The infusion was uneventful, I read during the appointment and didn’t feel too badly. During the previous cycle I had been very tired by the third day and I thought it was the addition of the Rituxan causing my fatigue. Now I think it was just lack of sleep during the previous nights from my “excretory exercises.” I really have to get up just about every hour all night long on the three days of my infusions. It makes it very difficult to get any satisfactory rest!

We didn’t do too much for the next several days. I started really getting weak and tired by Friday. As it’s getting a bit cool for the hammock, I only spent part of Friday afternoon on the deck, then had to move my rest area to the couch in the family room. I was horizontal for most of the next three days, feeling weak and tired. I slept in until 11:00 on Saturday, something I’ve never done before. I kept trying to get up, but was too tired when I tried to get out of bed. After I finally got up, I made it to the bathtub but was exhausted by the time I’d finished cleaning up. So, off to the sofa I went. There was a football game on, Colorado against UCLA. You know what UCLA means, don’t you? University of Colorado Loses Again! But, the local boys surprised the heavily favored Bruins and beat them handily in a game I dozed through.

Sunday and Monday were much the same with me on the couch, watching/dozing through football games. I went through another spell where I didn’t even get out of the house for four days. I wanted to, but just felt too weak. Finally on Tuesday I got Kathy to take me out for lunch at our local custard shop. It felt good just to be outside.

Wednesday was my birthday and I was treated to a surprise singing of Happy Birthday and presented with a balloon bouquet by several of the folks from work who dropped by over the lunch hour. I also got a ton of birthday cards. My Mom and others had talked to friends and relatives from all over, asking them to send birthday cards to me. And my wife had been holding back the cards. So yesterday I got over 40 cards, and another dozen came in today. My cousin Wanda Drayton, up in Illinois, even had friends of hers who don’t even know me send cards! Hey Wanda, Kay Schlesinger says that she has some great stories to tell about you, and let on that she’s younger than you, too. I got a number of great laughs and lots of wonderful thoughts in all those cards, which many of you were in on. Thanks!

In a recent letter I discussed the fact that there is not much more that can be done for me, at least at present, if the leukemia fails to go into remission, or returns at some point. In response to that, my Mom asked how we’ll know if it worked in the first place. Good question. There are at least two steps we’ll be going through to see if it works. First, I’ll have another bone marrow biopsy a couple of months after we finish the six or seven rounds of chemotherapy. That will show if we seem to have cleared out the leukemic cells from the marrow in the short term. You may remember that my marrow was 40% leukemic the week before we started the treatments. If that looks good, cleared of leukemic cells, then we’ll follow my white count to see if it again becomes abnormal. That, however, is an open ended process. In theory, if I get out five years from the end of the treatments and haven’t relapsed, then I’m considered to be “cured” though it still could come back at about any time. Remember that we don’t have any long term studies of the results of the course of treatment I’m getting. I guess the way we’ll really know if it works is if the disease hasn’t come back by the time I die of something else. At age 80 or so, hopefully.

I think I’ve been remarkably free of side effects of this treatment since I haven’t ever vomited, but when I really think about it, I really have had a lot of side effects, just not the ones I worried about the most. I hate to vomit! I’m glad that’s not one of the things that I have had, as listed below in excruciating detail.

SKIN: Starting the day after my infusions and lasting a week or two, my skin and my hands feel very dry. This time, I also feel itchy, for the first time. I also get a rash after two to three weeks, but the rash is just a fine red rash all over my body which hasn’t bothered me too much.
HAIR: I have mentioned losing hair. I lose some hair about three to four weeks after each infusion. Our hair grows in cycles, with some actively growing, as I recall from physiology classes long ago, and some “resting.” The drugs affect rapidly dividing cells all over the body, hopefully mostly the cancer cells which are the most rapidly dividing, but also the cells in the hair follicles that are growing at the time. So, a few weeks after each cycle I lose some more hair. It still doesn’t look bad at all, but I haven’t gotten a haircut since before the trip to Las Vegas a number of weeks ago. I lose most of my hair in the bathtub about the time I’m getting another round of drugs. Unfortunately it doesn’t seem to affect the hair growing out of my ears which is doing just fine.
VOICE: I get hoarse with each round of the chemo. Nobody mentioned that this would happen, but it has each time. I guess a couple of things are happening. First, I retain a lot of fluid that may collect in my vocal cords, making me talk like I have a cold. Also, the mucosal membranes of our bodies have a lot of rapidly dividing cells, so the mouth may be a bit inflamed as well. That’s why many folks getting chemo have bad mouth ulcers. Anyway, I think the vocal cords are a bit swollen and inflamed.
WEIGHT: It is incredible how much weight I gain with each round of chemotherapy. I actually gain 12-14 pounds in the three days of the infusions! Suddenly my pants don’t fit. Kathy had to go out and buy me some sweatpants to wear for that week of my cycles. The drugs they give me to prevent nausea (thank God!) include the powerful steroid Decadron. Well, that causes one to retain fluid and get fat. I drink a lot of fluids to flush out my kidneys, but not all of it gets excreted. Even after the infusions, I have to get up multiple times each night for close to a week to pee off the fluids I collect during the infusions. I get just about back to my normal weight in time to start another cycle.
SEXUAL: Ah, yes, sad to say, there are some sexual side effects as well. I hate to mention this, as I don’t want to embarrass my kids, who like all kids, see their parents as asexual creatures anyway (which begs the question: what are you kids doing here, then?). But for much of the cycle every four weeks there’s a problem in the plumbing. You know, Rover won’t do any tricks. Won’t sit up and beg. Enough!
GASTROINTESTINAL: The drugs they give me to prevent nausea work superbly. The steroids and Anzemet have prevented any nausea, and I’m very grateful. I really hate to throw up. And my appetite has remained normal, for the most part. But they work just as well at the point of exit. Suffice it to say that I’m trying to get lots of fiber. The effect lasts about two to three weeks.
MOUTH: After each round my mouth feels funny, like it’s furry or coated, or something. Maybe it’s the inflammation I mentioned earlier. If you’ve ever eaten really rich homemade ice cream, and had the coating of butterfat on the roof of your mouth when you’re finished, that’s what it feels like. I found that it makes me want spicy foods more than I usually do. Last Monday Kathy got me a bucket of hot wings to snack on during the football game. She figured that twenty wings would be enough of a snack for then with some left for lunch the next day. Well, I ate them all! Plus on Sunday I had nachos with lots of jalapenos. Usually I pull the jalapenos off the nachos; Sunday I was piling more on. I don’t know why, my mouth just demanded more stimulation.
FATIGUE: This is what I notice the most. From about day four of an infusion cycle and lasting for about a week in its severe form, and almost three weeks in a lesser form, I just feel completely wiped out. During the “fuzzies” I can’t think well (though I continue to beat Kathy at Quiddler most of the time...she should be embarrassed) and it’s a struggle just to get out of bed. This only lasted about two weeks after the first cycle, but really never completely resolved after the second cycle. I think the fatigue is going to be a cumulative effect with each cycle and will be more severe and longer lasting with each cycle. We’ll see how I do with this cycle. I continue to get up in the morning thinking I’m doing great, but then I find I’m tired again within an hour or two.
SINUSES: The sinuses can be a problem for anyone undergoing chemotherapy as there’s always bacteria in the sinuses. Generally the body’s defenses can keep them under control, but when the immune system takes a major hit the bacteria can get out of control and cause infections. Well, I was having problems even before I started the drugs and so I’ve had a flare of sinusitis every month, usually about the time I hit my nadir, when my immune system’s at its weakest. I can clear it with a round of antibiotics, but I hate to take them every month. I’ll be seeing my nose doc next week to see what she can do to help with a more permanent cure of this problem.

I believe I’ve gone on much too long, so I’d better put this “edition” to bed. I’ll be getting another blood test done to check my white count on Monday, and I’m again very curious to see what it will be down to. Until then....


Heard on a TV show recently: “If you want to hear God laugh, tell Him your plans.“