Chemo effects, and what I expect will happen.

Dave's Great Adventure
Chapter 1, Verse 5
7/28/02

Well, I don't intend to pester you with an update about every little runny nose or ache I have so I've been silent over the past few days. Over all, things are getting a bit better.

When last I put index fingers to keyboard, I was leaving to head out for the hammock since I couldn't think clearly. I did just that and settled in for a nap. But it was too cool and breezy, about 75 degrees (about 24 C) so I had to get up and come in for a sweatshirt! You folks in Texas and Georgia can only dream about such temperatures in July! Anyway, I spent all day Friday in a bit of a fugue state (not literally) and just didn't do much but "hang around" in the hammock or on the couch. I only went out of the house once, to accompany Kathy to the mail box, where I got several great cards from co-workers and offspring. Thanks guys.

Since I was still feeling woozy, we missed a wedding we'd been invited to Friday night, but Kathy did take me out for frozen custard that evening. Then I spent a couple of hours around the house not doing much before we went to bed.

This chemo is going to be an adventure-a-day with unexpected events daily. I got up Saturday not feeling too badly, but after a bath I was overcome with waves of nausea. Yuck! Fortunately the act was not consummated but I was very afraid of producing bilious vomit for a while. I choked down an anti-nausea pill and chewed some antacids to buffer whatever might be coming my way, and collapsed on the floor, sweating. Wow, I thought that any nausea might be on the days of the infusions; not days later! After a few minutes I felt a bit better and went downstairs where Kathy was. She didn't like the way I looked. Said I was too pale. I was still shaky so I went to the couch to rest some more and soon I was snoring (so I hear). A bit later I got up to talk to our daughter and provided a phone consult; she needed antibiotics called in to her neighborhood drug store, so I was accommodating. By then I was feeling somewhat better and had some coffee and toast for breakfast, and kept everything down.

By the afternoon I was feeling much better. So Kathy took me out looking for a DiscMan, since I'll be spending a lot of time either on the hammock or on the recliner in the chemo room in the coming months. Imagine, I'm almost 56 years old and have never had a DiscMan. Well, she took me to Sam's to look around but we didn't find any portable CD players. However, there was a terrific sale going of VHS tapes, since I guess they are going away soon, to be replaced by DVDs. Man, how could I pass them up. We got a series of tapes on the histories of World Wars I and II. Now I've got plenty to watch in the coming weeks.

Next we hit Circuit City where I found a basic Sony CD player and carrying case, and we headed home. I put the batteries in the player, popped in a Loreena McKennitt CD my brother Dan had made for me and turned it on! Man, the technology is so good now. The dynamic response of just the basic little earphones that came with the CD player is just superb! My poor ears, even after being assaulted in the past by helicopter rotors, M-16s, cannons and too many years of Rolling Stones at high volume, could still hear so many subtleties. I love my little CD player. So I went back out on the deck and back into the hammock, listening to Loreena (if you like Celtic, Irish music {with a hint of eastern Indian[?]} sound, she's the one for you) and went to sleep.

Kathy fixed a great meal for dinner, barbequed pork loin with great fixin's. And it all stayed down. No more nausea, I'm happy to report. We spent the evening out on the deck looking at the stars and just being quiet and together.

So what do I expect from this disease and the treatment? Well, let me go to the bottom line and then I'll go back to explain. I expect this disease will kill me, but I just don't know when. I mentioned that the average length of time from diagnosis to death is about 6 years now. That means, of course that some folks live with the disease for more than six years (sometimes decades) but that that some folks have it for less than six years, too. My disease is apparently "aggressive" and that has to worry me. Some folks have an "indolent" form of the disease that never progresses. I couldn't have been lucky enough to get that form.

There are all kinds of treatments for this disease, including what I'm getting. The key word is "treatments" because I can't use the word "cure." The disease seems, invariably, to come back at some point. Then you have to try something else, until nothing works. What I'm going to get, the rituximab with fludarabine and cytoxan, is the newest kid on the block, and I will be pleased (nay, ecstatic!) if I get into complete remission with no genetic evidence of residual disease, like 1/3 of the patients have done on this regimen in the M. D. Anderson study, but if I am so lucky as to fall into this group, I'll expect that it will, at some point, come back again. I think it is a bit like breast cancer; you can be 5, 10 or 20 years out from the disease and it can come back somewhere else and bite you fatally.

I think that I will probably get some relief, temporarily, from my high white counts but that I'm due for more treatments in the future. I think that ultimately I'll have to roll the dice and take my chances with a bone marrow transplant because that will be all that will be available to me. But even that doesn't effect a certain "cure." Folks with successful, perfect match transplants can do well for years before the disease sneaks back. This round of chemo is not the only treatment I'll be looking at, just the first, I'm afraid.

That brings up another problem; even if I'm lucky enough to outlive this disease for a number of years, it will be hard to keep practicing medicine if I'm out of "practice" for six to twelve months at a time for my therapy. I'll be out for most of the next six months. When/if the disease comes back and I need to go for the marrow transplant, I'll be out for a year. I see my medical career winding to a close pretty soon, I'm afraid.

Of course, conversely, when this happened to me I was considering my options for an early retirement. Curiously, now I really can't retire. I need the job for the benefits since I'm facing long and pretty expensive treatments, probably for the rest of my life. Oh, well. I needed something to do anyway. This'll keep me from getting too bored in my dotage.

Enough for now; I'll send another report your way in the coming days, probably not later than when I get my "Ralph" checked late this week.

Later,
Dave