Monday, February 9, 2004

We Have A Plan!

Dave’s Great Adventure, Book 2
Chapter 1, Verse 5
February 9, 2004
“...let the games begin....”


It’s been a while since I bothered you with one of my messages. I’ve been thinking about getting an update out for several weeks, but there’s been SO much going on that I’ve just sort of been preoccupied. Gosh, just think of the things that have happened. There was that poor Britney Spears who accidentally got married in Las Vegas a couple of months ago. Gosh, then she had to go through the trauma of a divorce just a couple of days later. She must have been devastated! And I guess she had to buy her “Ex” a Porsche too, just as a Happy Divorce present, or something. And, what did you think of the Bennifer breakup. Oh, my! How could that happen to SUCH a nice couple? I heard that JLo said the 6.1 caret ring Ben gave her was “cursed” or something. I would have thought it might cause carpal tunnel syndrome or a dislocated elbow or something, but “cursed?” Then there is the sad story of Janet Jackson who has been having trouble keeping her clothes on while in public. She must be absolutely mortified that her clothing has been “malfunctioning” while she has been on live television. Sadly, I was on an airplane during this unfortunate event and was unable to witness it! Dave Lettermen, however, said he was glad it happened. At least for one day, he said, he wasn’t the biggest boob on TV!

Such amazing things are going on in the world!

Now, the real reasons I haven’t gotten an update out sooner have been that (1) my docs have been debating what we were going to do and (2) Kathy and I have been out of the country for the last couple of weeks. Let me tell you about (1) first.

A couple of months ago I mentioned that my transplanter doc, Jeff Matous, said that despite the fact that the leukemic cells were again invading my marrow, there was still a way that we could harvest some stem cells from me to use in an “autologous” stem cell transplant (meaning a transplant using one’s own cells) sometime in the future, when I might be failing other treatments. The problem was that if we harvested the cells now, there would be more of the “bad guys” in there and it would just cause the disease to return that much earlier. So he proposed that we “purge” my marrow before collecting the cells.

In fact, that’s what we’re going to do, starting next week. Long-time readers of my “Adventures With Leukemia” series may remember my frequent mentions of a drug called Rituxan. This is actually an antibody which specifically attacks certain abnormal white blood cells, like leukemic cells. What Jeff has proposed is that we pre-treat me with a series of Rituxan infusions before doing the collection. This raised the cost of the collection considerably, so there were some prolonged discussions about whether my insurer/employer would bear the additional cost. In the end they agreed to do so, and the procedure is planned for most of this month, going through the first week of March. I’ll be getting the Rituxan infusions every four days, starting this Thursday. In the midst of these infusions, I’ll be getting a large IV line placed in my chest in a couple of weeks. That will be used to infuse another drug, Cytoxan, into the big blood vessels near my heart, where it will be rapidly diluted. If large amounts of Cytoxan were put into an IV in my hand, for example, it could leak out and destroy the skin in that area. The cytoxan will destroy most of my stem cells (Cytoxan = “cyto” which means cell, and “toxin” which means poison). But, then the remaining stem cells will begin rapidly reproducing and it’s during this time that they can most easily be driven out of my marrow, into my blood stream for harvesting. The harvesting will be done by collecting the cells from the same large IV line that was used for putting in the cytoxan a couple of weeks before (is this technical enough for you... and is anyone still reading this?).

So, about a month from now, I should be finished with the whole process. The only thing is, this will be a shorter but much more intensive process, so I’m more likely to have more side effects, like nausea, hair loss, etc. I may (or may not be) bald this time next month. I’m wondering what I should do about my appearance when I go back to work. One of my colleagues has a great idea. I’ll get a series of wigs: I’ll have an Elvis wig for Mondays, an Afro wig for Tuesdays, a Lyle Lovett wig for Wednesdays, and so on.... What do you think? Great idea or what!

In preparation for all this I got to have another bone marrow biopsy last month, on Kathy’s birthday, of all days to have it scheduled. That’s number 5, if anyone’s counting. We needed to see how fast the leukemia was coming back. I had had a couple of normal bone marrow biopsies in late 2002 and early 2003, but then found that last September about 5% of the cells in the marrow were again leukemic. The most recent biopsy was done just a few days before Kathy and I left on a trip which I’ll mention momentarily. Since we were gone for a couple of weeks, I didn’t get the results until I got back to town. I was busily trying to catch up with a lot of things in the clinic, and pulled up the biopsy, and a few other labs, on the computer, to see what they said. I scanned through the report as I listened to voice mail messages and read stuff on my desk. The next day, I was thinking, “Did it really say what I thought it said?” I pulled it up again.

“No diagnostic abnormality.” That’s what it said. Now, when we get lab reports back from the pathologist they come in three parts. The first part is a one line summary, which is followed by the details, the “fine print” if you will. Finally, there are any explanatory comments which may be needed.

“No diagnostic abnormality” is med-speak for “normal.” That would be a better report, with less leukemic cells, than was reported four months prior. That, in truth, would not be likely. Now, the second part, the “fine print,” mentioned looking through all the cells, noting normal cell growth, etc. Then it said there was “a minute focus of lymphoid aggregate consistent with a low grade lymphoproliferative process such lymphoma/CLL.” So, they in fact found something that could be leukemic, but they had to look hard to find it. That alone is, I think, great news. At least it shows that the leukemic cells are not growing rapidly and that my remission will, hopefully, not be over too soon. And it means that we should be able to collect a high proportion of normal stem cells with this upcoming procedure.

Man, I better stop spending my money so fast. I may live longer than I thought I was going to!

Speaking of spending money, last year when I achieved a complete remission after my first rounds of chemotherapy, Kathy and I decided that we would do some things that we had always wanted to do “sometime.” You know, while I was able to do them, not really knowing how much time I had left. One of those things was to see Alaska. The other was to see Antarctica. I’ve mentioned that trip a few times in this series of messages, and it finally happened. We made the reservations almost a year ago and went during the second part of January. Kathy was the reluctant participant in this venture, but ultimately had a good time.

We spent a couple of weeks on this trip, a cruise actually, and had the most fascinating time among the penguins, icebergs and seals. It was such a nice trip, seeing almost nothing that was man-made, and so much that was in its pristine, primitive state. It was a nice, mostly relaxing, and very educational trip that I really would have to recommend to any of you who have any interest in nature, geology, natural history, etc. It was just fabulous to be walking around on beaches with penguins and seals. The penguins mostly ignored us; the seals were, at times, aggressive and a bit irritable. The place is just incredibly beautiful and rugged. (We sent a series of about eight or so e-mails to family members about what we were seeing on this trip. If anyone who didn’t get them has any interest at all in Antarctica and what we saw/did, I’d be happy to send these messages to you too.)

That's just about all the significant news from here for now. I did, however, want to mention one other thing. Most of you probably remember that I found I had leukemia after getting sick when I had a hepatitis A shot. When that happened, I got lots of help and support from my friends at work and from lots of my patients. One of those patients is a lovely lady named Marlene, who kept in touch and sent me cards, etc. Marlene is about 68 years old. Well, Marlene got her flu shot a few months ago. Shortly thereafter she started getting sick, with low grade fevers, swollen lymph nodes and feeling weak. After getting worked up for this, we have found out that she, too, has CLL! So now Marlene and I have lots to talk about, and have been comparing notes, talking about treatments, etc. I just think it’s so ironic that this wonderful patient, who has given me so much support, should end up having the same damned disease. She says that seeing me doing so well gives her a lot of encouragement and that because of this, she isn’t at all afraid. Wow, I guess it’s a good thing she didn’t see me when I was weepy and depressed!

(I wrote the above just yesterday) Today I heard from Marlene again. She was going in for chemotherapy, single agent fludarabine, one of the drugs I got during my first round of chemotherapy. Marlene told us that her son, and her brother-in-law had died suddenly! God, my heart goes out to that poor woman. The same month she starts chemotherapy for a fatal disease she loses a son and a close relative. It’s true...”stuff” happens to people who really don’t deserve it.

This reminds me of a wonderful essay on death that I recently read. I think, if you don’t mind, that I’ll write it up and send it out to you kind folks in the near future. Maybe as a supplemental reading “assignment.”

I’ll be back sooner than you think, with a report on how the new round of chemotherapy is going.