Wednesday, July 24, 2002

The Second Day

Dave's Great Adventure
Chapter 1, Verse 2
July 24, 2002

Well, the Mexican food stayed down just fine. That particular experiment was so successful that we decided to try it again.

Yesterday I got up feeling just great; entirely normal, despite the fact that during the afternoon of Monday and into Monday night I had a bad migraine headache for which I took an unconscionable amount of medication over the course of 10 hours; only a doc would treat himself that way. Anyway, I got out of bed the next morning, ate some breakfast and then went out and did some yard work. I fertilized the grass and pulled the weeds. I'm not sure why I spend so much time on the grass. It's really looking lousy because we are told that despite being in the midst of the the worst drought in a generation, we have to water our lawns only every three days. The water commissioner says we CAN'T water any more than every three days, and only on designated days depending on our street address. On the other hand, the local homeowners covenants REQUIRE that we keep our lawns looking presentable lest our neighbors' homes plunge in value. Ahh, local low level bureaucrats. Therefore we can't water any less than every three days to save even more water (and money, since they're raising water prices this year).

But enough about the grass. After I finished my chores we had lunch and prepared to get ready for the chemo, part two. It wasn't scheduled until 3:00 yesterday so we got a late start, but the whole thing went quicker since we didn't get the videotape and warnings lecture this time. They again pre-loaded me with a bunch of dexamethasone (steroids) and the Anzemet, to prevent nausea, and away we went. The infusions, first the Cytoxan, then the Fludara, went just fine. Again, there was no stinging in the veins, no nausea, no nuthin'. I again was reading my humor book and laughing, or at least quietly chuckling, out loud.

Well, we didn't get out until about 5:00 and, knowing my wife for more than a couple of years, I knew she wasn't going to be able to find anything to cook at that late date, so we went out to eat on the way home. We came across a little Mexican joint on the way home and stopped in. I really wanted to give those anti-nausea drugs a challenge. Still, no problem.

We got home and I was feeling great. We made a few return phone calls and answered a few e-mails. I had intended to send out a message about the day's activities but before I got that done, I went out on the deck and lay in the hammock. Oops! When I again opened my eyes it was after 9:00 PM. I guess I was comfortable.

I haven't told you about my "homework" I have to do in conjunction with my chemo, have I? Everyday I take a drug that my brothers are familiar with, allopurinol. This drug prevents all the nucleic acids (DNA, RNA ) in the white cells that are being destroyed from forming crystals that can cause gout and kidney problems. So I have to drink lots of water. To add to that, after every dose of the chemo drugs I have to flush them out with even more water. I'm told to, uh, excrete 2-3 liters after each treatment. Wow. That's a bunch of "excretion." So I drink, drink, and drink. And then I excrete, excrete and excrete some more. That wasn't so bad when I started the chemo at 9:00 or so, but when I didn't finish until after 5:00, it was a problem. I was up about every 30 minutes last night wearing a path in the floor between the bed and the bathroom, doing what my doctor ordered.

And that isn't the only thing I've been told to do. Listen to this, straight out of the chemotherapy handbook, "Eating Hints." "...focus on helping you eat more higher calorie foods that emphasize protein. Recommendations might include eating or drinking more milk, cream, cheese, and cooked eggs. Other suggestions might include increasing your use of sauces and gravies, or changing your cooking methods to include more butter, margarine, or oil." Holy cow! Jackpot! This is exactly the diet I've always dreamed about but felt (slightly) guilty about following. Now I have license to eat ice cream for lunch if I want to! Wow!

Let me regress now for a bit. Some of you kind folks on this mailing list don't have the complete story of how I found about my disease and exactly what I have. I know that one of our long time friends didn't know anything about my disease until my "Adventure" e-mail showed up in her in-box (sorry, Kathy).

I have chronic lymphocytic leukemia (CLL). It's one of many forms of blood cancers, or more specifically, marrow cancers. CLL forms too many of the B-lymphocytes that fail to die on schedule, so they build up in the bloodstream and eventually collect in the liver, spleen, lymph nodes and marrow, where they crowd out the normal cells to the point that the body can no longer make the cells you need; red blood cells, platelets, bacteria fighting white cells, and so on. Eventually folks with the disease die of anemia and infection.

My dad had this disease as well and he died of it in 1981. He had it for somewhere between 5 and 9 years, but I'm not sure exactly how long. He never told us about it until he was dying, only my mom knew, and he wouldn't let her tell us. CLL is not really hereditary, though folks with a close relative with the disease have a three times as great a chance of getting it than the general population. Still, the chances are small. The disease is more common in men than women, more common in whites than blacks or Hispanics. The general background incidence is only 3/100,000 people (or about 1/30,000) so even with a relative with the disease, a person's chances of getting it are pretty small. I just happened to "beat the odds" if you will. Hey, I ought to buy more lottery tickets!

I've signed up for a study being done by the National Institutes of Health which is studying familial clusters of CLL and have sent them a family pedigree with everybody listed for three generations up and down the tree from me and my sibs, and listing what cancers any of them had. I also sent then a bunch of tubes of blood which they are using in some sort of esoteric studies of genes, etc.

I actually found out about the disease quite by accident, like most folks do. Early in the course of this disease most people don't know that anything is wrong. Then they get a routine blood test and find that their white count is too high. Actually, I wasn't getting a routine blood test, but had been feeling very ill for a couple of weeks after getting an immunization for hepatitis A, since Kathy and I go to Mexico a couple of times a year. A few days after getting the shot I started feeling sick and I got progressively weaker over the next two weeks with a mild hepatitis (caused by the shot?). Meanwhile, as we tried to find out what I had, almost all my tests were coming back normal. I didn't have HIV, mononucleosis, any of the usual hepatitis viruses, toxoplasmosis, cytomegalovirus, etc., etc. The only thing that was consistently abnormal was my white count, which was running about 18,000-20,000 (normal being about 3,000- 10,000). Finally a sophisticated test called flow cytometry (about which I know nothing) confirmed that I had a low grade CLL. Meanwhile my symptoms were abating and I had gone back to work, but now I had much more to worry about.

CLL is slowly progressive and pretty much uniformly lethal. The average length of time between diagnosis and death is about six years. There are lots of "treatments" out there for this disease, but no cure yet.

As I mentioned before, we debated a bone marrow transplant procedure but couldn't find a match among my sibs (hey, maybe I need to look up the milkman's offspring [just a joke, Mom]). So we're trying this chemo in combination with the antibody rituxamab (Rituxan) which specifically targets leukemic cells. We'll see how it does. If the first round of chemo drops my white count enough, we'll add in the Rituxan in the subsequent cycles. Those cycles will be much longer in terms of infusion time; six or so hours at a time! I'm going to get a Discman before we start those so I can listen to some music during the lengthy infusions. While we were trying to figure out what we should do for treatment, my white count was steadily rising. It went from the baseline 20,000 or so to over 60,000 in five months. CLL is considered to be aggressive if your white count doubles in a year's time. Mine tripled in five months! So I was very happy to be getting on with the treatment.

So, we go in again today for round three, the last in this month's series. I'll be taking my book in again with me, and doing some reading and drinking water (lots of it). Then we'll see what my blood counts do. The low point (or nadir; I call it my "Ralph," ) of my counts should be in about 10-14 days from the start of the treatment and that's when I'll be most susceptible to infections. If I keep feeling reasonably well and not too weak (and I haven't felt weak at all yet), then I'll try to go back to work intermittently. We'll see.

So, enough for today. For anyone interested, I'll send out another page in my "journal" tonight or tomorrow morning, describing today's (hopefully) non-events and a little more background on what we're going through.

Until later,