Sunday, March 30, 2008

Feelin' A Little Low

Dave’s Great Adventure, Book Three
Chapter 2, Verse 2
March 30, 2008
Feelin’ A Little Low

Man, I had a dickens of a time with the last letter, trying to decide how to start out my story about how this is the best regimen I’ve been on but which has the worst side effects so far. And I barely touched on the tale of the two cities which are managing my care, with Houston pulling the strings with Denton trying to do as they’re told at long distance, but this message will be a lot easier to start out. Every thing is low. Well, not quite everything.

Last Monday I went back in to get another blood count done. I wasn’t surprised to find that the total white blood cell count was only 1,100. That included about only 400 neutrophils (the good guys), a couple hundred lymphocytes (potential bad guys), and 400 monocytes (monocytes are white blood cells which circulate in the blood until they find a foreign invader, like a splinter or bacteria or something, at which time they migrate out of the blood and into the tissues and become the macrophages you may have read about in biology, which destroy foreign stuff). There was also a scattering of a few other normal cells called basophils and eosinophils, but usually they’re in such low concentrations they don’t even matter.

What surprised me, however, was that even with these low counts, I wasn’t started back on the Neupogen to boost my neutrophil counts. My white cell counts (which reflect the state of my immune system) after only two cycles of the new regimen, are almost exactly the same as my counts were back in 2002 after four cycles of FCR, and those low counts, as I’ve related earlier, led my doc to stop the infusions. “We’re just beating the crap out of your stem cells now,” he said back then. I really thought we’d start the Neupogen again to get me ready for the next cycle, but that’s not yet the plan. I suppose (I hope) we will start it up again after my blood count on Monday. My next cycle of chemotherapy is supposed to start on April 6th.

What also surprises me is that I really haven’t gotten sick. It seems that with my immune system so weakened, and with my body crawling with microbes, I should be getting a sore throat or a cold or pneumonia, or something. So far the worst that’s happened is that a chronic sinus problem is trying to flare up and so I’m taking a short course of antibiotics to suppress it. But that’s all. We have been very careful to avoid crowds and haven’t been to church, concerts or plays for a few months now, but even so, you’d think I would have to pick up something from time to time. But so far, so good.

The chemotherapy is designed to attack primarily white cells, but I have also mentioned that the Cytoxan is more of a “bombs away” type of agent. It destroys about anything it comes across. So, the drugs affect my other blood cell counts as well. Other than my white cells, what’s been most affected incident to the chemotherapy are my platelets, the cells that are active in causing blood to clot. Most folks have about 200,000 to 400,000 of these cells (per milliliter of blood) but my counts have been dropping down to the 150,000 range and below ever since my first chemotherapy back in 2002. But as of last week they were down to 60,000. Now, that’s pretty low, but fortunately blood clots pretty well as long as you have at least 20,000 or so of normal platelets circulating. My red cell counts have been slowly dropping too, but are nowhere near critical. My hematocrit, a measure of the number of red cells in your blood, was always about 48% when we lived in Denver. Normal is about 36% to about 45% or so. My 48% was a little high, but that’s because I lived in Denver, at a mile high, and when you live where the air is thin, you make more red cells. Also, being a man, I don’t lose blood each month like most women do, and so men typically have a higher hematocrit than women. My hematocrit has dropped to 36% now, the lowest it’s ever been, but it’s not at all worrisome. It just seems to be showing a slow downward trend. I expect it to rebound nicely after we finish up with the chemotherapy.

The reason that all my cells are affected is that all of them, the neutrophils, lymphocytes, red cells, platelets, etc., all come from the same population of stem cells. The stem cells magically grow, divide and make whatever cells we need unless they are affected by outside forces, like leukemia or chemotherapy. Since I have both issues, it’s little wonder that my cell counts are skewed. That’s probably enough detail for Steve, so I’ll stop with the technical stuff for now.

The aches and pains I mentioned in my last letter have slowly diminished, but haven’t totally gone away. I don’t have the headaches or general body pains anymore, but many of my joints still hurt when I stress them, just by moving them in some cases, more often by putting pressure on them. I’m finally to the point that it doesn’t hurt too much to roll over in bed. It makes it hard to get much sleep when every movement at night hurts. I hope the Avastin works if it’s going to put me through these body pains at each cycle.

By an unhappy coincidence, the husband of one of our TNT coaches is also taking Avastin now. He has a basal cell carcinoma; you know, the little ditzels that many of us have had frozen off our skin at some point. Except that his basal cell skin cancer has spread to his lungs, which is an extremely rare occurrence. Only about 300 similar cases have ever been reported, so treatment options are not well documented with this rare condition. Anyway, Larry has been given one round of Avastin with another drug and so far he has had few of the body aches and pains that I’ve experienced. So I wonder if it’s really the Avastin causing the body aches, or the Avastin in combination with all the other powerful toxins I’m getting (which did not cause me pain in the past) or if it’s maybe the fact that I’m not flushing the stuff out by taking in large quantities of fluids like I did in the past. At any rate, we have decided to take the advice of our friend Kathy in Atlanta, and do the “consume mass quantities” of fluids during and after the next round of infusions. I’ll be drinking lots of water, ginger ale and tea for the three days of the infusions next month in hopes of reducing the side effects. We’ll see if it works.

Speaking of TNT, you know, really, TNT isn’t the acronym, or even the initials of Team In Training, is it? It should be TIT, right? Man, we’re missing out on a great marketing tool by not using the correct acronym. Think of the interesting logos we could have in our advertising. Think of all the guys who would join up just out of curiosity about what the TITs were all about. I’ll bet we could sign up Hooters and Bone Daddy’s Restaurants as corporate sponsors (For those of you not in Texas, Bone Daddy’s is a great chain of BBQ restaurants. It also happens to employ very healthy young ladies who wear hot pants and tight tank tops.) and I’ll bet that many of the gentlemen’s clubs in Dallas would sign up as well. You know, we could even eliminate those long, hot, sweaty marathons and have wet T-shirt contests instead. They’d be easier to train for and might bring in bigger crowds! Of course, we’d have to be highly selective in who we entered in those contests, because not many folks would pay to see me or Martin in a wet T-shirt, but I’ll bet Laura and Kelly would volunteer, don’t you? Actually, after lots of training runs I’ve seen Martin in a wet shirt. Not a pretty sight. But I really think we need to run this idea past the suits at corporate, don’t you? Just a thought.

I heard from several folks about Texans and snow. Sounds like Texans deal with it a lot like the folks in South Carolina. My brother Doug said this: “One rogue snowflake starts terrorizing the countryside and they hit the grocery stores, buying out all the milk and bread and toilet paper, enough to last until the spring thaw.” On TV interviews I’ve heard folks here say essentially that. People get accosted in store parking lots by the ever-present and ever-obtrusive reporters who are desperately looking for something on which to report, so they stalk folks at exits from grocery stores and Blockbuster shops, coaxing “statements” out of them. But I have heard people say that, yes, they were stocking up on bottled water, chips and DVDs to ride out the “storm” when snow was approaching.

I’m a “restored” Texan, having moved back to the state I grew up in after twelve years on the frozen tundra that is Denver. I remember blanching at hearing that the temperatures there got down into the single digits or below on a regular basis in the winters. Can people really survive in those temperatures, I wondered? All I knew of Denver weather was what I saw on weather reports, and of course those weather reports only showed Denver when there was a lot of snow. I thought it was cold up there all year long! But it’s not, and yes, people can survive and do very nicely in those single digit temperatures.

And I now remember that there is a different definition of “cold” here than there is in Denver. Around here, when it gets into the 50s, or even 60s sometimes, many folks bundle up in coats and knit caps. A couple of days ago I was leaving the community and the car indicated that the temperature was 64 degrees. Some of the workers out here were wearing their parkas with the hoods up! Parkas!

In Boulder, near Denver, there is an annual “Polar Bear Plunge.” It happens, I believe, on New Year’s Day, and a bunch of truly insane folks go to the reservoir, break a hole in the ice, and they voluntarily jump in the water. Well, we too have a “Polar Bear Plunge” in our community here in Denton. It happens in the community swimming pool in April. The last time they held it there was a statement to the effect that, “Cool temperatures in the low 80s kept many participants out of the water.” Are you kidding me? What kind of “Polar Bear” can’t stand temps in the 80s! A “Wussie” Bear?

And you’d think that if Texans can’t stand the cold, they should at least be able to stand the heat. But no. If the temperature is over about 75, most cars have their air conditioning going. And on a regular basis you can see folks sitting in store parking lots, running their engines with the AC on for thirty minutes to an hour while their spouse is inside shopping. It drives me nuts to see this, with them wasting gasoline and adding to the horrible air we have around here, instead of just rolling down their windows.

But, hey, the Denver folks are just as bad about heat. They think anything over about 75 or 80 is “hot.” Just as Coloradans snicker at Texans about the low tolerance to cold, Kathy and I snickered every time we heard the weatherman in Denver talk about the “scorching” temperatures in the 90s. That’s just another summer day in Texas. When we moved to Denver we came from El Paso where it was over 110 for days on end. The air is extremely dry in Denver, with the humidity often in single digits so the temperatures in the 90s are easy to tolerate because it’s so dry. At least I thought so. In Colorado they keep track of the summer days that reach 90 or more. Heck, here in Texas we don’t keep track until the temperatures get over a hundred! If the temps ever reached 100 in Denver, well then, they get the reporters out doing “man in the street” interviews about how folks manage to get along when it’s so hot.

My sister-in-law Sharon, up in Montana, wrote to correct me for joking about Montanans having the AC on in their homes when the temps were above 60. Seems most homes up there don’t even have AC. But, she said, they do run the AC in their cars when it’s over 70. She’s sort of joking, but not really. Her husband Ray wrote to me a few years ago to confess that he found himself running the car AC when it was about 70 outside, and mused that it was so different from what I do, because I don’t typically turn on the AC in the car until it gets to about 90 or thereabouts. It’s just that I’m a miser and running the car AC, under most circumstances, costs about 10% of your fuel economy. So using it a lot makes your $3.00 gas really cost $3.30 or so. In any case, the folks in Montana are only marginally worse than Coloradans in heat intolerance, and they’re followed closely by us Texans. I guess it’s just a matter of what climate you’re accustomed to.

My brother Doug also wrote in and clarified that to him, the “D” in PDQ definitely stood for “damned.” At least when he uses it. He apparently uses this somewhat archaic term on a regular basis in his work at Winthrop University in Rock Hill, SC. Everybody knows kinda what it means, but many folks don’t know the precise definition. Debbie, my great friend and the wonderful nurse who kept me on schedule for years when I was working up in Denver, wrote to thank me for defining PDQ. She said that when she was growing up, her mom used the term regularly. She used to hear, "You kids better get this mess cleaned up PDQ, your father will be home in a few minutes...." Instinctively she knew it meant to get things done in a hurry, but didn’t know what it stood for (she is unashamedly a blond!) until I clarified things for her.

Our good friend and former neighbor, Tom, checked in with this: “Sorry to hear about the aches and pains, but I recall you are familiar with a masseuse and maybe you need to give her a call....” As a matter of fact, I think I still have Veronica’s number.

And of course, we get cards and e-cards from Lou and Joan just about every day. Thanks, guys. And Happy Birthday, Joan.

That’s probably plenty for now. I’ll check in again when I know what my white cell counts are and what the plan is leading up to my next round of drugs. Bye for now.