Our bit of heaven, and promising new therapies.

Dave’s Great Adventure
Chapter 1, Verse 6
July 30, 2002

Well, on Sunday I sent an update through Saturday so now I guess I’ll send a bit more on the last few days. It’s been up and down.

Sunday we got up and I felt pretty good. We had breakfast and decided I was well enough to go to church. However, during the church service I was weak and clammy when standing for some of the longer hymns and for a christening they had for four kids.

We went home and changed, and I started feeling a bit better. So we went out to eat; we went to the local custard shop for hot dogs, chips and a Pepsi. Then I had a custard for dessert. Then I had a chocolate-peanut butter sundae, too. Remember, I was just following my doctor’s orders to get a high fat diet!

I felt pretty well for most of the day but had times that I felt weak so I went to the reliable hammock again to try to rest. Mother nature would have none of that; a small dark cloud passed over and sent a short, sparse shower onto the deck. The raindrops felt like icy darts so I was forced back inside.

Later some friends called, asked if we wanted to go out for dinner, and we did. So we went out again, this time for Indian food. My appetite has been pretty much okay throughout this. Everything went down and stayed down just fine.

Monday was a great day. I got up feeling completely back to normal. I felt so good that I spent all day working on things around the house, getting caught up on chores and minor repairs. I figured that the worst of this round of chemo must be over and thought I should try to get myself back into the clinic in a few days if I kept feeling well. I called to see if it might be possible to work a half day or so on Thursday and/or Friday. I got a call back from the boss a while later saying there would be no room for me on those days (?!). Gosh, I have only been gone a couple of weeks! I didn’t think that there would be a problem getting back in to the clinic since I had done my best not to leave too soon (to my dismay, at this point, as it has altered my therapy).

Sic transit gloria!

So, I’ll continue to be off at least until next week. The rest of the day I continued to work around the house and continued to do just fine. Perhaps I overdid it.

I woke up today feeling crappy again, tired, headachy, sleepy. However, Kathy and I had planned a picnic in the mountains today and I was not going to change our plans. So we packed up the 4-Runner, bought a bucket of fried chicken (doctor’s orders) and headed out. We love a little out-of-the-way campground about 65 miles west of town, called the Handcart Campground. It’s a long way from anywhere and we figured it would be quiet on a Tuesday. Well, it was not only quiet, it was deserted. Perfect!

I guess heaven is different to every person, and I hadn’t thought much about heaven until recently (my, isn’t that quite an assumption!) but I decided that Handcart is about as close to heaven as I can get on earth. We were among 75 foot pines, with a stream rushing, about 30 feet away, with a soft wind in the tops of the trees. It was about 75 degrees and sunny through the trees. No other people were within earshot but there were birds in the trees and chipmunks scurrying about. It was just what we had come for.

We ate a picnic lunch, played a card game (Quiddler) which I won, and then I spread a blanket out and lay down on the pine needles. I had brought along my DiscMan, but the sounds of the forest turned out to be all I needed. I settled in for a nap in my piece of heaven. (Well, less the mosquitoes, and it would have been heaven.) The sounds of the stream and the trees put me to sleep.

A while later I awoke, and Kathy joined me on the blanket We fed the birds, which brazenly approached us looking for handouts. We, of course, obliged.

Something kinda funny happened. By now I had the DiscMan going. I was listening to Pink Floyd’s “A Momentary Lapse of Reason.” At the start of the third track (“The Dogs of War”) there is a growling behind the listener. We were deep in bear territory, and when that track started and I heard the so-realistic growl (remember the fantastic sound reproduction I mentioned?) behind me, I startled and whirled around, certain that a bear had come for food! I couldn’t find the source of the growl until the song commenced and I realized it was just the CD.

We lazed around the campground until about five, and then headed out, but instead of going directly home, we went further west, toward the little town of Fairplay, an old mining town of maybe 1000 people, give or take a dog or two. The reason for this side-trip is that there are a couple of Texas ex-patriots who have imported a genuine pit smoker and real barbeque to the Colorado mountains and sell it in their restaurant, the South Perk. It is the best real barbeque in the state, as far as I can determine. The barbeque was to be dinner and I also planned to bring a couple of racks of ribs home in the cooler. But it was closed when we got there!

Sic transit barbeque!

Okay, otherwise it was a perfect day. So we came home and rested. I was still tired, even after my nap, and I guess it was just as well that I hadn’t been scheduled in the clinic in a few days. I wonder when I’ll be able to predict with any accuracy that I’m going to feel well in future days.

My blood counts should be dropping to their lowest in the next few days, and I’ll be getting tested about Thursday to see what effect the chemo is having on my white count (and my other vital counts, as well, like my red cell counts, platelets and neutrophils). It will be interesting to see how I feel during that time, when I will be most vulnerable to infections.

I’d like to say a bit more about the treatments for CLL. Despite my pessimistic letter recently, about the virtual certainty that the disease will return, regardless of treatment, there is reason for cautious optimism. I’ve told you quite a bit about rituximab, the drug that we’re going to be using on me soon (hopefully). It is, as frequently mentioned, an antibody designed to attack lymphoma/leukemic cells specifically. This type of therapy is probably one of the few hopes for a “cure.” This cancer is a tough one, as it is literally everywhere in one’s body; in the marrow, spleen, liver, lymph nodes, intestines, everywhere. It is not like a cancerous leg which you can amputate to save the rest of the body. To “cure” this cancer, you have to somehow rid the body of every single one of the billions of cancerous white cells in the body. A tough job, to be sure.

Even if you kill off 99.9% of them, it will not effect a cure, and eventually the surviving cells will reproduce and the disease will come back, this time in a stronger form as the cells that survived the original treatment will be tougher than the other 99.9% of the cells, which were killed off during the first treatment.

It’s a bit like dumping a box of sand on your living room carpet, rubbing it all into the nap and then trying to get every single grain back out. Can’t be done unless you burn the rug or something.

That’s what they try to do in bone marrow transplants. They try to destroy every cell of the patient’s marrow with high dose chemotherapy and/or radiation, which brings the patient to the brink of death. Then they, hopefully, “rescue” the patient by infusing new, normal marrow. Hopefully, it “takes” and the patient survives.

The other option is to try to find some other method of destroying all those billions of cancerous cells selectively, without destroying all the necessary cells; the ones that make the red cells, etc. That is where antibody treatment brings promise. The antibodies can, hopefully, be designed to attack specific antigens, or specifically shaped proteins, that appear on leukemic cells but not on normal white blood cells. The antibodies could then get into every nook and cranny of the patient’s body, seeking out the abnormal cells and destroying them. That’s something radiation or chemo can’t do without also killing the patient.

Well, rituximab is the first of these antibodies to be developed, but it’s not the only one. There is also one on the market called Campath, of which I’ll probably be telling you more later. It works very well, but is less selective than Rituxan, as it destroys a goodly number of normal cells too. Studies are already underway using Campath AND Rituxan, since they attack different antigens, and early results (very early) are encouraging. Campath leads to more infections than Rituxan, since it destroys more normal cells, which is why it is being used more cautiously so far.

And, there are perhaps three dozen other anti-leukemic antibodies under development at this time. In theory, if antibodies could be designed to attack all the antigens that appear on abnormal cells but not normal ones, then they could be used in some combination to try to selectively destroy all the bad guys but leave the good guys alone. So, there is something to hope for in the coming years. We’ll see what comes to pass.

“And so it goes.”

Until later,
Dave