Monday, July 22, 2002

The Start of Dave's Great Adventure!

Dave’s Great Adventure
Chapter 1, Verse 1
July 22, 2002

(I plan to keep a bit of a log about my activities surrounding my latest adventure with the leukemia, chemo, etc. Since I'm writing it up on the computer I thought I'd share it with those of you who might be interested as well. If you'd rather not get repeated e-mails on the topic, just send me an "unsubscribe" note or just delete the notes as they show up in your in-box with all the Viagra ads, refinancing offers and porn.)

Well, it's really happening now. After months of watching my white count steadily rise and getting lots of bad news, we're finally going on the offensive. Today the chemotherapy started. But back to that in a moment.

When we found out, late last February, that I had leukemia, it was not a good time in my life. I really hadn't ever been very sick and to find out that I had a terminal illness for my first real disease process was stunning. We debated what to do. My doc (Brian Koester) suggested we consider a bone marrow transplant as that seemed to be one of the leading options to try to effect a "cure." Since I have four siblings and the chance of any one of them matching is about one in four, it seemed likely that we'd find a match. Well, it didn't work out that way. The law of averages beat me, or something. All my sibs matched each other, but none matched me. Helluvadeal! However, by then I'd learned that the chance of dying from the transplant itself was about 25% so my initial enthusiasm had waned anyway. We put the transplant on the back burner for the meanwhile. It is still a possibility in the future with an unrelated donor, if we get to the point that there are no other good options.

The next option was to try some chemotherapy combined with some new stuff. The new stuff is a monoclonal antibody derived from mice which have been sensitized to leukemic cells, specifically a particular antigen (called CD-20) on those cells. It's called Rituxan; first designed to treat lymphomas, against which it does a spectacular job, and now being tested on leukemic patients with pretty good results. We were to have started in early June but I put off the start date until today as one of our partners left the clinic and if I left at the same time we'd have to cancel many hundreds of patients who had already been scheduled. That turns out to have been a mistake. My white count at the time was about 39,000 (about 4,000 to 10,000 is normal) but by the time we got around to scheduling the first round of chemo, it had climbed to over 60,000! The problem with that is that there are too many complications using the Rituxan if the white count is over about 50,000. So we decided to proceed with combination chemotherapy for a while to get the white count down to the point that it will be safe to add in the Rituxan. That will be, hopefully, soon.

Last week I had a baseline bone marrow biopsy, a procedure I remember witnessing as a medical student and something I really didn't care to go through myself. However, the docs are much more humane that they were a couple of decades ago. My doc asked if I wanted IV sedation drugs and I told him that I didn't think so, that I was pretty tough. He looked at me and said he'd suggest I take the drugs. I was convinced and took them.

He got an IV started and they gave me a Valium-like drug with Demerol added. I kept talking to Brian as I felt him start the procedure with an injection of local anesthetic. I guess I was talking too much. At one point I remember him saying to the nurse "Give him some more Versed, please." I felt him punching through the back of my pelvis with a huge needle and digging around a bit. It wasn't pleasant, but it wasn't too bad. Then, it was all over. They sat me up, explained how it had gone and told me a little about what the chemo would be like. I was thinking, "Hey, that wasn't bad at all. I think I could have done it without the drugs." Only later did I find that I really, really wasn't all there for all the procedure. As Kathy and I talked about what had happened, there were a lot of conversations that had gone on of which I had no memory. I was talking and responding appropriately, but the memory banks weren't recording the data. I guess they didn't record the pain input either, as Kathy said I was making a lot of faces during the digging around part. I guess that's what the drug is for.

The bone marrow biopsy showed that my marrow is composed of 40% leukemic cells. That means I have enough normal cells to keep my other required functions, like making red blood cells, platelets and bacteria fighting white cells, in the normal range.

Well, last Thursday was my last day at work for up to six months. Did you guys know that I'm on an extended medical leave during my chemotherapy? Ahh, there's the silver lining! If I feel up to it, I can go in for a few days or a week or so at a time, but I don't have to for now. We'll see how I tolerate the medicines and how my marrow does with the toxins I'm getting.

Last Thursday night the nurses gave a party in my behalf as I started my leave of absence. The theme was Germany, so we had all kinds of German food; rolladen, red cabbage, sauerkraut, bratwurst, potato salad, Black Forest cake, and a bunch more. I've got great colleagues and I love them very much. There were a lot of tears for me as I start this phase of my life, but we're all very hopeful that this chemo will at least buy me some time.

So, today was the first verse of the first chapter of the chemo story. I'll be getting the stuff at least three days in a row every four weeks for up to six months. Since I'm new to this stuff, never having been on the receiving end of it, and not having given it in at least 20 years, they, thankfully, treated me pretty much like every other patient. Kathy and I watched a videotape about chemotherapy produced by the cancer treatment center at Sloan-Kettering in New York. Then the nurse went over just about every side effect that could happen and was careful to tell them all to Kathy so she could turn me in if I was trying to ignore anything.

After all our questions were answered she put in an IV. She then pre-loaded me with anti-nausea and anti-inflammatory meds (Azmetic[?] and dexamethasone) and started the infusion of the two agents, one at a time; Cytoxan followed by fludarabine.

I didn't know what to expect, because as "everybody" knows, chemo makes you very sick. I didn't feel too bad as the infusion started so I started reading a book my sister Deb had sent to me a few months ago, a compilation of humor. I had read part of it earlier, but hadn't finished it, so I thought I'd read some more today. Soon I was laughing out loud at the stuff I was reading, and that was a bit out of place in the infusion room. Most folks there are pretty quiet and not at all happy to be there. Soon the infusion was over! It felt like they'd given me a saline infusion instead of the nasty stuff I'd made the mistake of looking up in my books ("...side effects and complications may include coma and death....")

Well, we made our appointments for tomorrow and Wednesday and left. I drove home, but en route, took Kathy out to lunch at our favorite Mexican food place. That tells you kinda how normal I'm feeling so far. I hope the Mexican food doesn't come back up!

So tomorrow we go back for another round. I hope that it continues to be this easy, though I expect that the effects will be cumulative and I'll likely feel weaker as time goes by. But I'll keep everybody up-to-date with how we're (Kathy is very much involved in this, too) doing.

Until later,