Friday, February 29, 2008

The Nadir

Dave’s Great Adventure, Book 3
Chapter 1, Verse 6
February 28, 2008
The Nadir

When I started whining about this Kathy reminded me that I used to complain about it back when I first went through chemotherapy in 2002. I’d spend most of a week going through the infusions, then about another week recovering. I’d feel pretty crappy during all that time and we’d spend most of our time at home. And then, after I’d spent two weeks in the house and just as I was starting to feel normal again, I’d hit my nadir.

The nadir is the low point of a chemotherapy patient’s white count. I’m there now. The deal about the nadir is that when your white cell counts are extremely low, you’re also at risk for all kinds of infections from both internal and external origins. We all carry around very dangerous bacteria in and on our bodies, but generally they aren’t a really big deal because our immune systems keep them under control. We have staph in our noses, E. coli in our bowels, strep and fungi on our skin, and women have any number of very dangerous organisms in their vaginas like clostridia and pseudomonas, but it’s just not a big deal most of the time. Our immune systems are wonderfully designed to deal with these things under normal circumstances. But if the immune system is significantly weakened by something, those organisms can go wild and attack. That’s what happens to people with AIDS. The organisms that normally wouldn’t be a big deal can rise up and kill them.

This is also a time that I’m more likely to get diseases from other people, which is why Kathy watches over me so closely when we go anywhere. There is a lot of flu going around Texas right now and several people, including kids, have died of it. (If you haven’t gotten your flu shot yet, it really isn’t too late—it can help even up to April or May according to my sources.) Because of my compromised immune system we’ve been spending way too much time indoors—at home. Just to be very cautious we’ve skipped the symphony, church, and a couple of plays we had planned to go to, because I’m now one of the immunocompromised folks that could die from the flu if I were to get it. And in a crowd, you really don’t know who has it.

So I’m feeling pretty normal again, but can’t be around too many folks, I guess.

Now, Dr. Keating had given me the “no restrictions” talk regarding the chemotherapy when we met in Houston a couple of weeks ago. But that went against everything I’d been told up to that point, as I’d previously been given lots of restrictions around getting the chemo and during its aftermath, especially during the nadir. When my local doc’s nurse came out with my CBC (complete blood count) results, she told me my white cell count was pretty low, at 2,600, and that I was at risk of infection. She gave me the “fresh fruits and vegetables” talk again, the one which had caused Dr. Keating to smile at its mention. Also, my neutrophil count had dropped some more, to 1,400, lower than the low end of the normal range for neutrophils, but that’s not extremely low really. In the past I’ve had times when my neutrophils were down in the 100 range. Now that’s pretty low. In fact, just before my stem cell collection in early 2004, my neutrophil count was zero for several days and I survived. But I digress.

Medicine has been described as a science and an art. And it truly is a blend of both. In this particular situation, the science says that since my white cell counts are depressed, I’m at increased risk for infections. And that’s absolutely true. The art though is trying to decide how low is too low and what activities should be prohibited. Most folks in medicine tend to be conservative about these things, not wanting to take unnecessary risks with their patients. But others are more relaxed in their approach, not wanting to put unnecessary restrictions on their patients. It just varies depending upon your doc’s experiences and risk aversion. As an example, when my white count got down to 1,100 in the fall of 2002, my doc in Denver kept me out of the clinic and actually started me on injections of Neupogen, a white cell growth factor. But just a couple of years later, one of our nurses in the same clinic was going through chemotherapy for breast cancer and when her count got down to about 1,000, her doc didn’t think anything of it and let her keep working, bald head and all. And the Neupogen; well, it works well to stimulate the growth of neutrophils, but my docs here in Denton don’t want to use it because when it’s stimulating the growth of neutrophils, it’s also stimulating the growth of the residual bad guys too. Different places, different opinions—that’s the “art” part of medicine.

Which brings me back to the “nadir.” It’s been about two full weeks since the end of my last infusions of chemotherapy but my white count has continued to drop. That’s for a couple of reasons. Firstly, the Cytoxan has been gone since shortly after it was infused, but during its short time in my veins and marrow, it set about cutting down all the rapidly dividing cells it could find throughout my body, including white cells being newly formed. Likewise, the Fludara was targeting all the white cells it could find during the three days of infusions, so there was an immediate drop in my white count during that time. But now that the rapidly dividing cells have been “clear cut,” the white cells that were to replace my naturally and chemically dying cells aren’t in the pipeline and can’t rush into the battle to replace the ones that have been lost.

And secondly, the Rituxan and the Avastin are antibodies, as I’ve previously mentioned. They’re still hanging around, and though slowly being eliminated, they’re still doing their jobs. They won’t be totally gone until about the time for the next infusions, presently scheduled for March 10th. The Rituxan, remember, specifically seeks out and targets lymphocytes with that CD-20 antigen (the CD stands for “cluster designator” as the CLL lymphocytes grow in little clusters of identical clones in the lymph nodes) and continues to reduce their numbers.

I should have a rebound in my counts shortly, as those stem cells which weren’t killed off will be recovering and starting to make more white cells again, both of the good and bad varieties. I’ll find out how much of a rebound on Monday when I get my next CBC.

Sorry to be so didactic, but there are folks out there who crave these details. Steve, a good friend from Denver and the husband of one of my patients, said “And I always appreciate the technical descriptions along with the narrative-- it must be the engineer in me.” And Monica, also from Denver, said, “It's kind of like attending an online college course in the study of leukemia, without the exams and tuition!!” Hmm…is that good or bad? Monica and her husband Don used to bring me no-beans red Texas chili when I got sick back in 2002, and good stuff it was. It was made according to a recipe used by Don’s sister, Cindy, who tied Bobby Flay, of Food Network fame, in a televised chili cook-off not too long ago (she markets her spice mix as “Cin Chili” and it’s available at Central Markets in the DFW area and, of all places, Cosmic Chili in Bozeman, Montana, if you’d like to try her stuff...and you should!).

Speaking of didactic, I want to tell you a little about what some of the numbers I’ve been throwing around mean. I’ve mentioned that my white cell count, which includes all the varieties of white cells, was about 90,000 before we started the infusions. What that means is that in every cubic centimeter (CC) of my blood, a volume about three-eights of an inch square, there were 90,000 white cells. About 90% of those white cells were lymphocytes, so I had about 81,000 of them per CC of blood. Now, three weeks after the infusions, there are but 700 lymphocytes per CC of blood, so remarkably have the drugs sought out and specifically killed them. We’ve taken out about 97% of all my white cells, and over 99% of my lymphocytes, the great majority of which were CLL cells, but have “only” taken out about 75% of the other, normal kinds of white cells. That’s the great news. But it’s also the bad news in a way. Those normal lymphs that are being taken down…well, they make my antibodies. That’s another reason I’ll be at some risk for many months to come, even after we conclude my current round of drugs.

Meanwhile, Kathy has managed to keep me healthy with her crazy ways. I’ve told you about her wearing masks when she cooked, and spraying down the tub after she used it because she had a little cold. Well, last week I noticed a strange “scent” in the air, kind of an antiseptic smell. I tried to place it but couldn’t so asked Kathy what it was. Well, she admitted that she’d sprayed the bed down with Lysol to try to kill off the viruses she was shedding. She’s a little crazy, but, man, is she dedicated to keeping me well.

I came across a little article recently titled “Treating CLL: Optimism Not Required.” In the article it says, “Contrary to popular belief, there is no evidence that an optimistic attitude leads to a better cancer outcome. In fact, insisting on a cheery disposition when someone is struggling with a scary disease may actually do more harm than good, according to a leading psycho-oncologist.” Now, first of all, have any of you ever heard of a “psycho-oncologist?” It gives me the mental image of a guy in a white lab coat walking around the Bates Motel with a long knife in his (or her, ‘cause I’m not sexist) hand. This guy goes on to say, “The flipside of believing a smile can banish cancer is believing that a frown can cause it.”

I’m glad to hear that, because when I first found out that I had leukemia and that there was no cure, I was determined to go about my life in a way that no one would be able to tell I was sick. I was going to smile, keep up with my work, not complain, and I was going to beat the disease. Yeah, I was going to be the first! Everybody who gets cancer thinks that way, that they’re going to beat the disease even though millions of people before them, good folks with great attitudes and work ethics couldn’t.

But things didn’t work out that way. The first thing was the depression that can overwhelm you when you have found out that you’re going to die in a finite period of time. We all have an image of our life going on out before us in a path that leads to an ever-receding horizon, one we’re never going to get to. But when you get the diagnosis of cancer, especially one with no known cure, suddenly there’s an earthquake in front of you and the earth falls away, leaving you facing a cliff. And you can’t stop advancing towards it. Each day the edge of the cliff gets closer. I put my fears about this into a message to my family and friends in August of 2002.:

I couldn’t escape the depression. And in time, I found I couldn’t escape the effects of the disease and its treatment. I became weakened because of the disease, the drugs, and from the emotional toll of dealing with a lethal illness. But I didn’t want to wimp out and give up. I kept going on and on and on until it became dangerous for me to try to practice medicine, something I’ll talk about in another message. Now I find out, from this psycho-oncologist, that trying to keep a positive attitude wasn’t required and neither did being depressed hurt, at least in terms of progression of the disease. Sometimes it’s hard for Type A people to just give up and not be in charge of things, especially when they have no control over what’s going on anyway. But it’s been easier for me since I did just that. I gave up control of my disease to my docs and gave up my job because I couldn’t control the effects CLL was having on me. And I’m better off for having finally done so. Thanks, psycho-oncologist, for excusing my failures.

Say, I heard recently that Avastin has now been approved for use in breast cancer. And hopefully we’ll find that it works for CLL as well (though we won’t know that for some time). The more uses it gets approved for, the more the stock in its manufacturer is going to rise. And at $30,000 a dose, they may make some money. Hey, Genentech is calling to all you investors out there!

I heard from my step-brother/cousin Tom recently. He and his wife have retired to The Villages down in Florida. “Disneyland For Old Folks,” he calls it. He just checked in to brag about their weather and say that they’d been out in the car with the top down. Oh, yeah, he also said he didn’t really want to hear about how many tax dollars I’d been using up.

And our former neighbor Tom in Highlands Ranch, Colorado also checked in. He made an interesting offer. I’d mentioned that he had mowed my lawn and taken care of things for me while I was out of action with chemo in the past. Well, he offered to mow my lawn all the time if I’d move back to Colorado. Well, now. Maybe I can start up a bidding war or something. Say, how many of you folks here in Texas would match his offer and mow my lawn, and also, say, take out the garbage every week if I don’t move? Tom also sent another note with a more serious message. “I am really glad you are doing this for your posterity, this, your journal and genealogy will be a legacy for eternity. I mean that sincerely, it is a gift of love that probably won't be fully appreciated by your loved ones for some time to come, but trust me, it will be cherished and more than any other thing or inheritance that you might leave.” I agree with Tom, and I think all of us should write down something of our lives for our families and those that come later. I wish my dad had written down his tales of World War II. In fact, he told some stories so many times that we didn’t want to hear them after a while, but now he’s gone and we didn’t write anything down so the stories died with him. I guess that gives more ammunition to Bonnie who wants me to write that book (and a lot of you out there agree with her). But who would publish it and who would buy it?

Martin checked in to say he was in Austin for a marathon and was reading my letter on his phone. He and his brother Neil are techno-geeks and are always checking their Treo phones or their laptops for e-mail, sports news, or whatever. That reminds me; Martin’s overdue for his pap smear.

We also heard from Clovis and Phil, who were our hosts at their beautiful Alaska Wolfhouse B&B in Juneau a couple of times. We went there to recover from my stem cell collection in March 2004. Wow, Alaska in March with a bald head! Cool…literally. Some of you who have been around my scribblings for a while may remember Phil as the guy who threw his typewriter out a third floor window while in a college course. We related that episode to my problems adjusting to the addition of computers to our clinic in Colorado; I was known to damage a few keyboards and mice out of frustration. (See DGA Humor, March 11, 2004) They were wonderful, accommodating hosts and are doing well in retirement up in the small town of Connor, Washington. On our first to Juneau I found I was in good company at the Wolfhouse, as there were two other folks visiting at the same time, both with incurable cancers. Mary Lou had recurrent breast cancer and Judith had primary peritoneal cancer, a malignancy that looks and acts like ovarian cancer, but occurs in women who no longer have ovaries. I have found that, when faced with incurable disease, a lot of folks start taking care of items on their “bucket list,” as the list of things you always wanted to do before you died is fashionably called of late. Going to Alaska seems to be high on many folks’ list. Anyway, both Mary Lou and Judith fought and fought with incredible bravery, but both succumbed to their disease within about a year of our meeting. Mary Lou wrote about herself in verse, and I was getting Judith’s on-line journal fairly regularly. Judith was remarkably upbeat despite her dire circumstances, but I could tell by her descriptions of what was going on that she didn’t have much time left. Then the messages stopped. I guess, as doctor psycho-oncologist noted, a positive attitude, in and of itself, won’t keep you alive. If it would, these two brave women would still be writing.

I didn’t mean to end this on a downer, but I guess I will. Sorry.

Let me close by telling you that I’m already wondering if we can possibly complete all planned six cycles of the new chemotherapy. I pointed out that we’ve already destroyed 97% of my white cells. If the next round destroys another 97% of what’s left, I’m going to be left with not much of any white cells at all. Back in 2002, we stopped after four of six planned rounds of the FCR regimen (without Avastin) because my counts were very low. Well, we’re almost at those same levels already with only one cycle this time. The folks at MDA have told me on at least a couple of occasions that they wouldn’t have stopped when we did back in 2002, that they would have been more aggressive. I guess I’ll find out in the coming weeks how aggressive they want to be and how far we can take this process. Enough for now.

Stay tuned.

Mascot Dave

PS: Please take a few moments to look at this link:
and think what you would be saying during this talk.
(Thank you to my good friend Cesar in Miami for this wonderful message)

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