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.
Dave
dreck@prodigy.net
Sunday, March 30, 2008
Friday, March 21, 2008
TOTAL--BODY--PAIN
Dave’s Great Adventure, Book Three
Chapter 2, Verse 1
March 21, 2008
TOTAL—BODY—PAIN
It was the best of times, it was the worst of times. It was a time…. No, no, I don’t think I can say that. I think someone has used those lines before, maybe the Beatles or somebody.
The seasons change, and for every season there is a purpose…. Oh man, that’s been used before too. Was it the Byrds? Yeah, I think so, but they ripped off that band Ecclesiastes for their lyrics, didn’t they?
Okay, the seasons changed here in Denton and now it’s spring.
Now, just writing that line I can hear my friends and kinfolk in Florida chuckling. For them it’s been spring every since last November when summer ended. That’s about all they have…summer, spring, summer, spring, with an occasional short season called “hurricane” when they get bored with good weather. And I know that our friends in Colorado have had some nice sunny days up in the 60s that tease them into thinking that spring is coming, but I know those guys still have a couple months of snow left. March and April are supposedly the snowiest months in Colorado. Hey, the last freeze up there isn’t until after Mother’s Day [memo to self: look for Mother’s Day cards soon]. And our relatives up in Montana can only dream of those sixty degree days. Heck, when it gets up to sixty or so, they turn on their conditioning. I exaggerate, perhaps, slightly.
Anyway, it’s spring here now. But it didn’t come easy. Last week we had SNOW here in north Texas. That’s a problem, and a curiosity, because snow and Texas don’t belong together in the same sentence. First, on Monday, about ten days ago, we had some snow flurries and the local news types were falling all over themselves running around town finding car windshields covered with snow so they could give us a live report. Even more absurdly, about six weeks previously one of the local stations sent a reporter about fifty miles out of town to give us a live report of snow flakes falling in the area of the small community of Rowlett. Nothing was sticking on the roads, or even on the grass, but there was frozen water floating down from above and it needed to be reported on.
But last week, we had SNOW. Or what passes for snow in Texas. We had a heavy, wet, slushy snowfall of about six inches in the Denton area, less as you went into Dallas. It piled up on the grass, and the roads got slushy but they were never snow-packed or frozen. But, if the reporters went nuts over snow flurries the previous Monday, what do you think they did with SNOW! Man, they broke into the national news to report the “winter storm.” We had live reports from slushy streets to watch the traffic, wondering if the cars could actually make it through the slush. They could. Very exciting stuff, that traffic.
Now, in north Texas, it doesn’t even take snow to bring the city to a halt. All it takes is the threat of snow. If flurries are predicted, restaurants and businesses sometimes close early, people change their plans and schools let the kids out a couple hours before the end of the day, and everybody rushes home to watch the weather reports. Probably like the folks in Florida do during the season called “hurricane.”
So you have to know already what happened last week when we had SNOW. Things closed down Thursday, and many, if not most places were closed or on a delayed schedule the next day, too, despite the fact that it was going to be bright and sunny. In fact, the next day was the day I was scheduled to take my B-17 flight and it went off just fine, demonstrating that the weather was a non-factor even for an antique bomber. But it was a factor in Denton. I was scheduled for a doctor’s appointment and some pre-chemotherapy lab tests at 9AM that same Friday. We got up early to go in and be there on time.
We were ready to leave at about 8:00, which was, of course, way early, but that’s the way I’ve been trained to be since I’ve been married. That’s when the phone rang. A clinic employee called from her home to tell us not to come in, that the clinic couldn’t open and that we should call back at about ten o’clock to see if they could reschedule me. Well, I had a bomber flight to catch and I couldn’t be waiting around to be rescheduled for that afternoon, or possibly even later, since I was supposed to start my therapy the following Monday. So instead of waiting around and calling back at ten, we just went on in at about 9:15! I figured it would be harder for them to put me off if I was at their door in person rather than being a voice on the phone.
The day was really very nice and bright. The temperatures were in the mid-forties or so, and the roads were mostly just wet. Traffic was flowing normally. When we arrived at the clinic we were surprised to find it not only open, but crowded with staff and patients. We signed in and in fact, got right in for the labs and my appointment, though we were late for both. The news was good. The Neupogen was working, my white count was up to about 16,000, mostly neutrophils, and we were on track for a Monday start of Round Two. So far, so good. We took off for Ft. Worth and my ride in the old bomber.
But “The Blizzard of ‘08” wasn’t finished causing problems for me. On Monday morning we went in, early of course, to start the drugs. We picked out an infusion recliner and waited, and waited. The drugs weren’t ready, the orders hadn’t been written, and mostly, the labs that we had drawn the Friday before, lab tests measuring my kidney functions which were critical to have before starting the drugs, weren’t back from the laboratory. Seems they went out late on Friday, couldn’t be done on Saturday, and the one person in Dallas, or whatever, who could run the tests, wouldn’t be in until after 11:00 on Monday! They finally sent us home with instructions to call back in a couple of hours to see if we could get things going, but it soon became obvious that the first infusion, which was going to take six to seven hours, wasn’t going to get done that day.
But we came back the next morning and everything went much better. The lab results were back and were normal, the drugs were ready and the staff was ready to plug me in. Off we went! The plan has now changed a bit. I had four days of drug infusions in Houston, but since I did well and had no complications or reactions, from now on I’ll have all the drugs given in just three days. That’s great, because the shorter the time I need to be tied down to the infusion room the better I like it. Still, the three days can be long, being seven, four and about three hours long each. But they went well and without complications.
This new regimen is probably the best I’ve had in many ways, if the goal is to kill off white cells, especially lymphocytes. As my brother Doug, out in South Carolina (where they’re finally getting the rain they’ve been wanting for a couple of years) said in a message, not too long ago, “Everything they give you seems to knock out your white cells pdq” (for you youngsters, that means “Pretty Damned/Darned Quick”). That’s been true in general, but it’s especially true now. I’ve mentioned how low my counts went just weeks after the very first round of drugs. My total count went from almost 90,000 to 2,400. So I had another blood count done just four days after we finished my second round of drugs and my count was already down to 1,600! The good news was that most of the remaining white cells this time were the neutrophils I need to keep me free from infections. I was amazed, however, to see that my lymphocyte count, which had been about 81,000 before we started all these drugs last month, was now down to 100. That’s one hundred…no typo there. And that was a week or two away from the nadir or low point, which we expect in the next ten days. That’s good, because that’s what the drugs are supposed to do, but I need SOME lymphocytes to make antibodies. I’m wondering how close the folks at MDA are going to let me get to the jaws of death before I am (hopefully) snatched back. As before…stay tuned, this really could get interesting.
But if this is the best drug regimen I’ve been on, it also is the worst of all the regimens I’ve tried in terms of how it makes me feel. In the past I’ve been tired, been fuzzy brained, lost hair, and all those things, but this new stuff hurts! It almost has to be the Avastin, because I’ve had all the other drugs before. After the first round I had horrible headaches and neck pains for a while. But after the second round, just about everything hurt. I had muscle pains, neck pains, back pain, chest pain, bone pain, joint pain, and especially head pain. Miserable, lousy, splitting headache pain. Those of you with migraines will appreciate what I’m speaking of. I went through a lot of pain meds and muscle relaxants that my doc had given me after I complained about the muscle spasms and headaches after the first cycle. They helped, but it took days to get past the “really bad pain” and into a state of “just some pain.” Even now, it hurts to clench my fist, lean on my wrist or elbow, or raise my arms. I hope this is a temporary thing. But if it’s not, I guess it’s the price of doing business with Mr. Leukemia.
Now I’m back to where I was a few weeks ago; feeling better enough to be bored by inactivity but entering my nadir time and unable to be around many folks. I will be incredibly interested to see where my white counts are when we go back into the clinic on Monday. I’m thinking they’ll be below 1,000 and I’ll be started back on the Neupogen. We still have about $2,400 worth of the stuff in the refrigerator next to the yogurt.
If one of the purposes of the change of seasons is to warm things up after the winter, then it serves to remind large mammals to start shedding excess hair. So, right on cue, I started losing hair from the first round of drugs. It took about three weeks, but a substantial amount of stray hair started showing up floating on the surface of the bathtub water. It’s really not a noticeable amount of hair loss yet, after just one round of drugs, but the other resident of our home says she can tell the difference as she runs her fingers through my tresses. If worse comes to worst, I’ll shave my head again and wear my “Wish You Were Hair” hat that Kathy got for me the last time I shaved it all off.
With my white counts being so low, I am, as I’ve too frequently mentioned, very susceptible to infection. One reason I haven’t yet gotten sick is that I’m taking a couple of drugs to try to keep me relatively healthy. I mentioned the Valtrex I’m taking a few weeks ago. I take it daily to minimize the risk of getting viral infections or reactivating old infections, like chicken pox and so forth. But I’m also taking Bactrim (also called Septra) on an odd schedule. This is a drug often used for bladder infections, bronchitis, etc. In my case, it’s being used to reduce my chances of getting pneumocystis carinii pneumonia, an infection most commonly seen in folks with HIV infections. Lots of folks have pneumocystis carinii in their bodies, but like many of the germs I mentioned a few weeks ago that commonly use our body as a home, it causes no problems in the presence of a normal immune system. Folks with compromised immune systems, like those on chemotherapy regimens, are at risk, however. So I take the Bactrim, one tablet twice daily on weekends. That seems to be all I need, though it’s a change from the way I took it in 2002, when I would take one tablet every Wednesday and Saturday.
I thought about asking my doc to reduce my dose of Zofran for this cycle, since it has the well-known ability to transform hamburgers into concrete within the body. But when I mentioned this he said, no, no, that Zofran caused diarrhea. Huh? I looked it up. Zofran can cause constipation or diarrhea. Now, I ask you, how can that be? How can one drug cause side effects which are polar opposites of each other. So I didn’t get my dose reduced and am paying the same price. Oh well. The price of doing business….
Say, Kelly (our Honored Hero co-captain) gave me an enthusiastic “thumbs up” for writing a book. She said my stuff compared very well to the Captain Underpants books she reads to her kids at bedtime. Uhh…should I leave out the stuff about massages and beavers if I do?
I heard from Bobbie again after my little story about the B-17 I flew in. I have mentioned that Bobbie was a feisty German gal. Well, in the early 1940s Bobbie was a young German citizen and she watched from Frankfurt, Germany as the B-17s flew overhead. Back then they were on business trips, not the pleasure cruise I took, and they were dropping tons and tons of bombs on the city. Frankfurt was devastated by the bombing. When I was stationed there in the early 1980s, during various construction projects they were still finding occasional bombs that had to be excavated and disarmed.
In closing this update let me tell you that I was happy to find that some of my mutual funds include Genentech, the maker of both the very expensive Rituxan and the even more expensive Avastin I am taking. You know what that means? It means that when you taxpayers out there are buying these drugs for me, you’re also boosting the value of my mutual funds! I’m sure my cousin/stepbrother Tom out in Florida will be even happier to hear about that!
And with that I’ll close this update. Hopefully Kathy and I will be able to see some of you in the DFW area in the next week or two as I return more to normal, presuming my white counts permit us to be out and about.
Dave
dreck@prodigy.net
Ecclesiastes 3:3 (Early description of chemotherapy)
“A time to kill, and a time to heal,
A time to tear down and a time to build up.”
Chapter 2, Verse 1
March 21, 2008
TOTAL—BODY—PAIN
It was the best of times, it was the worst of times. It was a time…. No, no, I don’t think I can say that. I think someone has used those lines before, maybe the Beatles or somebody.
The seasons change, and for every season there is a purpose…. Oh man, that’s been used before too. Was it the Byrds? Yeah, I think so, but they ripped off that band Ecclesiastes for their lyrics, didn’t they?
Okay, the seasons changed here in Denton and now it’s spring.
Now, just writing that line I can hear my friends and kinfolk in Florida chuckling. For them it’s been spring every since last November when summer ended. That’s about all they have…summer, spring, summer, spring, with an occasional short season called “hurricane” when they get bored with good weather. And I know that our friends in Colorado have had some nice sunny days up in the 60s that tease them into thinking that spring is coming, but I know those guys still have a couple months of snow left. March and April are supposedly the snowiest months in Colorado. Hey, the last freeze up there isn’t until after Mother’s Day [memo to self: look for Mother’s Day cards soon]. And our relatives up in Montana can only dream of those sixty degree days. Heck, when it gets up to sixty or so, they turn on their conditioning. I exaggerate, perhaps, slightly.
Anyway, it’s spring here now. But it didn’t come easy. Last week we had SNOW here in north Texas. That’s a problem, and a curiosity, because snow and Texas don’t belong together in the same sentence. First, on Monday, about ten days ago, we had some snow flurries and the local news types were falling all over themselves running around town finding car windshields covered with snow so they could give us a live report. Even more absurdly, about six weeks previously one of the local stations sent a reporter about fifty miles out of town to give us a live report of snow flakes falling in the area of the small community of Rowlett. Nothing was sticking on the roads, or even on the grass, but there was frozen water floating down from above and it needed to be reported on.
But last week, we had SNOW. Or what passes for snow in Texas. We had a heavy, wet, slushy snowfall of about six inches in the Denton area, less as you went into Dallas. It piled up on the grass, and the roads got slushy but they were never snow-packed or frozen. But, if the reporters went nuts over snow flurries the previous Monday, what do you think they did with SNOW! Man, they broke into the national news to report the “winter storm.” We had live reports from slushy streets to watch the traffic, wondering if the cars could actually make it through the slush. They could. Very exciting stuff, that traffic.
Now, in north Texas, it doesn’t even take snow to bring the city to a halt. All it takes is the threat of snow. If flurries are predicted, restaurants and businesses sometimes close early, people change their plans and schools let the kids out a couple hours before the end of the day, and everybody rushes home to watch the weather reports. Probably like the folks in Florida do during the season called “hurricane.”
So you have to know already what happened last week when we had SNOW. Things closed down Thursday, and many, if not most places were closed or on a delayed schedule the next day, too, despite the fact that it was going to be bright and sunny. In fact, the next day was the day I was scheduled to take my B-17 flight and it went off just fine, demonstrating that the weather was a non-factor even for an antique bomber. But it was a factor in Denton. I was scheduled for a doctor’s appointment and some pre-chemotherapy lab tests at 9AM that same Friday. We got up early to go in and be there on time.
We were ready to leave at about 8:00, which was, of course, way early, but that’s the way I’ve been trained to be since I’ve been married. That’s when the phone rang. A clinic employee called from her home to tell us not to come in, that the clinic couldn’t open and that we should call back at about ten o’clock to see if they could reschedule me. Well, I had a bomber flight to catch and I couldn’t be waiting around to be rescheduled for that afternoon, or possibly even later, since I was supposed to start my therapy the following Monday. So instead of waiting around and calling back at ten, we just went on in at about 9:15! I figured it would be harder for them to put me off if I was at their door in person rather than being a voice on the phone.
The day was really very nice and bright. The temperatures were in the mid-forties or so, and the roads were mostly just wet. Traffic was flowing normally. When we arrived at the clinic we were surprised to find it not only open, but crowded with staff and patients. We signed in and in fact, got right in for the labs and my appointment, though we were late for both. The news was good. The Neupogen was working, my white count was up to about 16,000, mostly neutrophils, and we were on track for a Monday start of Round Two. So far, so good. We took off for Ft. Worth and my ride in the old bomber.
But “The Blizzard of ‘08” wasn’t finished causing problems for me. On Monday morning we went in, early of course, to start the drugs. We picked out an infusion recliner and waited, and waited. The drugs weren’t ready, the orders hadn’t been written, and mostly, the labs that we had drawn the Friday before, lab tests measuring my kidney functions which were critical to have before starting the drugs, weren’t back from the laboratory. Seems they went out late on Friday, couldn’t be done on Saturday, and the one person in Dallas, or whatever, who could run the tests, wouldn’t be in until after 11:00 on Monday! They finally sent us home with instructions to call back in a couple of hours to see if we could get things going, but it soon became obvious that the first infusion, which was going to take six to seven hours, wasn’t going to get done that day.
But we came back the next morning and everything went much better. The lab results were back and were normal, the drugs were ready and the staff was ready to plug me in. Off we went! The plan has now changed a bit. I had four days of drug infusions in Houston, but since I did well and had no complications or reactions, from now on I’ll have all the drugs given in just three days. That’s great, because the shorter the time I need to be tied down to the infusion room the better I like it. Still, the three days can be long, being seven, four and about three hours long each. But they went well and without complications.
This new regimen is probably the best I’ve had in many ways, if the goal is to kill off white cells, especially lymphocytes. As my brother Doug, out in South Carolina (where they’re finally getting the rain they’ve been wanting for a couple of years) said in a message, not too long ago, “Everything they give you seems to knock out your white cells pdq” (for you youngsters, that means “Pretty Damned/Darned Quick”). That’s been true in general, but it’s especially true now. I’ve mentioned how low my counts went just weeks after the very first round of drugs. My total count went from almost 90,000 to 2,400. So I had another blood count done just four days after we finished my second round of drugs and my count was already down to 1,600! The good news was that most of the remaining white cells this time were the neutrophils I need to keep me free from infections. I was amazed, however, to see that my lymphocyte count, which had been about 81,000 before we started all these drugs last month, was now down to 100. That’s one hundred…no typo there. And that was a week or two away from the nadir or low point, which we expect in the next ten days. That’s good, because that’s what the drugs are supposed to do, but I need SOME lymphocytes to make antibodies. I’m wondering how close the folks at MDA are going to let me get to the jaws of death before I am (hopefully) snatched back. As before…stay tuned, this really could get interesting.
But if this is the best drug regimen I’ve been on, it also is the worst of all the regimens I’ve tried in terms of how it makes me feel. In the past I’ve been tired, been fuzzy brained, lost hair, and all those things, but this new stuff hurts! It almost has to be the Avastin, because I’ve had all the other drugs before. After the first round I had horrible headaches and neck pains for a while. But after the second round, just about everything hurt. I had muscle pains, neck pains, back pain, chest pain, bone pain, joint pain, and especially head pain. Miserable, lousy, splitting headache pain. Those of you with migraines will appreciate what I’m speaking of. I went through a lot of pain meds and muscle relaxants that my doc had given me after I complained about the muscle spasms and headaches after the first cycle. They helped, but it took days to get past the “really bad pain” and into a state of “just some pain.” Even now, it hurts to clench my fist, lean on my wrist or elbow, or raise my arms. I hope this is a temporary thing. But if it’s not, I guess it’s the price of doing business with Mr. Leukemia.
Now I’m back to where I was a few weeks ago; feeling better enough to be bored by inactivity but entering my nadir time and unable to be around many folks. I will be incredibly interested to see where my white counts are when we go back into the clinic on Monday. I’m thinking they’ll be below 1,000 and I’ll be started back on the Neupogen. We still have about $2,400 worth of the stuff in the refrigerator next to the yogurt.
If one of the purposes of the change of seasons is to warm things up after the winter, then it serves to remind large mammals to start shedding excess hair. So, right on cue, I started losing hair from the first round of drugs. It took about three weeks, but a substantial amount of stray hair started showing up floating on the surface of the bathtub water. It’s really not a noticeable amount of hair loss yet, after just one round of drugs, but the other resident of our home says she can tell the difference as she runs her fingers through my tresses. If worse comes to worst, I’ll shave my head again and wear my “Wish You Were Hair” hat that Kathy got for me the last time I shaved it all off.
With my white counts being so low, I am, as I’ve too frequently mentioned, very susceptible to infection. One reason I haven’t yet gotten sick is that I’m taking a couple of drugs to try to keep me relatively healthy. I mentioned the Valtrex I’m taking a few weeks ago. I take it daily to minimize the risk of getting viral infections or reactivating old infections, like chicken pox and so forth. But I’m also taking Bactrim (also called Septra) on an odd schedule. This is a drug often used for bladder infections, bronchitis, etc. In my case, it’s being used to reduce my chances of getting pneumocystis carinii pneumonia, an infection most commonly seen in folks with HIV infections. Lots of folks have pneumocystis carinii in their bodies, but like many of the germs I mentioned a few weeks ago that commonly use our body as a home, it causes no problems in the presence of a normal immune system. Folks with compromised immune systems, like those on chemotherapy regimens, are at risk, however. So I take the Bactrim, one tablet twice daily on weekends. That seems to be all I need, though it’s a change from the way I took it in 2002, when I would take one tablet every Wednesday and Saturday.
I thought about asking my doc to reduce my dose of Zofran for this cycle, since it has the well-known ability to transform hamburgers into concrete within the body. But when I mentioned this he said, no, no, that Zofran caused diarrhea. Huh? I looked it up. Zofran can cause constipation or diarrhea. Now, I ask you, how can that be? How can one drug cause side effects which are polar opposites of each other. So I didn’t get my dose reduced and am paying the same price. Oh well. The price of doing business….
Say, Kelly (our Honored Hero co-captain) gave me an enthusiastic “thumbs up” for writing a book. She said my stuff compared very well to the Captain Underpants books she reads to her kids at bedtime. Uhh…should I leave out the stuff about massages and beavers if I do?
I heard from Bobbie again after my little story about the B-17 I flew in. I have mentioned that Bobbie was a feisty German gal. Well, in the early 1940s Bobbie was a young German citizen and she watched from Frankfurt, Germany as the B-17s flew overhead. Back then they were on business trips, not the pleasure cruise I took, and they were dropping tons and tons of bombs on the city. Frankfurt was devastated by the bombing. When I was stationed there in the early 1980s, during various construction projects they were still finding occasional bombs that had to be excavated and disarmed.
In closing this update let me tell you that I was happy to find that some of my mutual funds include Genentech, the maker of both the very expensive Rituxan and the even more expensive Avastin I am taking. You know what that means? It means that when you taxpayers out there are buying these drugs for me, you’re also boosting the value of my mutual funds! I’m sure my cousin/stepbrother Tom out in Florida will be even happier to hear about that!
And with that I’ll close this update. Hopefully Kathy and I will be able to see some of you in the DFW area in the next week or two as I return more to normal, presuming my white counts permit us to be out and about.
Dave
dreck@prodigy.net
Ecclesiastes 3:3 (Early description of chemotherapy)
“A time to kill, and a time to heal,
A time to tear down and a time to build up.”
Sunday, March 9, 2008
Survivors
Dave’s Great Adventure, Book Three
Chapter 1, Verse 8
March 9, 2008
Survivors
Over 12,000 B-17s were built before and during World War II and this aircraft was instrumental in the American war efforts in Europe. It flew higher and farther than most other aircraft of its type and flew strategic missions to places that were heavily protected and very dangerous for the Allied air crews, like oil refineries, munitions factories and railroad facilities. For most of the war it also flew farther than its fighter escorts could, and so was heavily armed with a dozen or more fifty-caliber machine guns so its crew could defend themselves against the enemy fighters sent against them. For this reason it was called the Flying Fortress.
But the B-17 wasn’t invincible. Over 4000 of them were lost in combat with the loss of over 45,000 crewmen. They were flown in huge flights of up to a few hundred planes, towards target areas known to be defended by antiaircraft artillery and fighters, and these large gatherings of aircraft, sometimes called “aluminum overcast” (as one surviving B-17 is called), were easy targets. Missions over defended areas of Europe frequently resulted in losses of ten to fifteen percent or more of the bombers.
Though the loss rates were often very high, the B-17 gained an almost mythic reputation as a survivor, a plane that could take horrendous damage but still manage to get home safely. There are many, many stories of badly damaged B-17s, some missing the entire nose, some missing parts of wings or tails, or with large holes in the sides of the fuselage, coming in for landings back at their bases in England or Italy. One plane was so badly damaged that the other airmen in the formation declared that they had seen it destroyed, only to see it show up, late and heavily damaged, at its home base in England. One of this plane’s crewmen said, “The plane can be cut and slashed almost to pieces by enemy fire and bring its crew home.”
I had signed up for a flight on “Nine-O-Nine,” a restored B-17 named for a famous B-17 which had gone through 140 missions without being damaged or aborting its mission. It was flying out of Alliance Airport in Ft. Worth, as part of the Wings of Freedom tour of three historic World War II aircraft, also including a B-24 and a B-25. These planes are survivors too, this B-17 being only one of about fourteen of the original 12,700 B-17s manufactured that still are in flyable condition. I was going to be flying on a plane that is older than I am. A mobile, flyable piece of history.
While we were at the airport, watching the planes come in for their landings, we stood near a woman about our age, who was watching intently. We talked to her and asked if she, too, was taking a flight. She wasn’t but was very interested in the B-24 “Liberator” bomber that was coming in. Her dad had been a bombardier on a B-24 during World War II and had died in a crash in New Guinea before she was born. Recently the military found the wreckage of the aircraft and recovered a couple hands full of human remains, all that was left of the crew, but they were brought back and the family was finally able to bury their lost airman. She wanted to board the B-24 and sit in the bombardier seat. She said she’d probably bawl the whole time.
To fly on the B-17, I had to sign a waiver. The waiver signed away my rights (or Kathy’s, actually) to sue in case the plane didn’t have a happy landing after taking off. The waiver form said that the plane had a “provisional” certification from the FAA, which means, I suppose, that it’s known to take off and land safely most of the time but doesn’t meet current safety standards. I signed it, as did the few other “passengers” that were going along. We climbed into the plane, quite literally because there were neither steps nor gangway. We grabbed a handhold over the rear hatch and lifted ourselves through the opening. The plane obviously wasn’t made for passengers or comfort, so it’s neither heated (which is why they invented "bomber jackets") nor pressurized. Plus, there are no seats except those for the pilots and a couple of the original crew, like the radioman and the bombardier. We sat on the floor in various places around the plane as we took off, strapped to the sidewalls of the bare aluminum fuselage with antique military seat belts. They told us that once we were airborne we could unbuckle and roam around the plane, but that we shouldn’t lean on the hatch we had entered through, as it was made for easy exiting and could give way under pressure. No one went near it during the flight!
I had ear plugs for the flight, as four 1200 horsepower air cooled engines make a lot of racket. And I had multiple layers of clothing, because the ground temperature was in the 40s when we took off, and it was even cooler up in the air (and the bomber has an open hatch on top through which you can stick your head into the 160+mph slipstream if you want, which of course also lets in a very cool blast of air). But what I needed, I found out, was a “hard hat.” Climbing through the hatches and clambering among the bomb bays and passages, I kept banging my head on metal edges. No serious damage was done, but it hurt. It was quite the adventure to be crawling through this ancient aircraft, sitting in the bombardier’s seat, manning the waist guns or even looking out the top gun turret, as it flew over north Texas. Too soon we were given the signal to re-buckle in our takeoff positions and prepare for landing.
Tom Landry is an icon in Texas. While I was living in Texas during my med school years and beyond, he coached the Dallas Cowboys, back in the glory years when the media declared them to be “America’s Team.” At least once, during every broadcast game some announcer would introduce him as “the only coach the Cowboys have ever had.” He coached the team during some great years but was unceremoniously fired when Jerry Jones bought the team many years ago. Well, Tom Landry died of leukemia about eight years ago, and each year there is a leukemia benefit in Dallas in his name. And Tom Landry flew B-17s during WW II, though that wasn’t ever mentioned by the sportscasters. He flew thirty missions in these planes and survived a crash landing in Czechoslovakia during the war. Additionally, his older brother Robert also flew B-17s and was killed in a crash.
Meanwhile, my bone marrow has been doing its best to survive the first round of chemotherapy, after having been intentionally but heavily damaged. I told you that I’d be getting daily doses of Neupogen, which I’ve been giving to myself after the nurse “certified” me in giving myself subcutaneous injections. After three days of Neupogen my white count had risen from a total of 2,400 with only about 360 neutrophils and 700 lymphocytes, to a total count of 16,900 with 12,900 (!) neutrophils and 1,100 lymphocytes. So the Neupogen worked very well, as it should at $400 a shot (made by Amgen, if you want to know). It raised my “good guys” significantly with only a very small rise in the number of lymphocytes. If my marrow survives, I survive. I saw my doc here in Denton on Friday and he pronounced me well enough to begin Round Two. And so we will. My appointment is a little before Nine-O-Nine on Monday morning and off we’ll go.
Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/
B-17 pictures below:
http://www2.snapfish.com/share/p=54691205104447181/l=352500024/g=28835691/otsc=SYE/otsi=SALB
Chapter 1, Verse 8
March 9, 2008
Survivors
Over 12,000 B-17s were built before and during World War II and this aircraft was instrumental in the American war efforts in Europe. It flew higher and farther than most other aircraft of its type and flew strategic missions to places that were heavily protected and very dangerous for the Allied air crews, like oil refineries, munitions factories and railroad facilities. For most of the war it also flew farther than its fighter escorts could, and so was heavily armed with a dozen or more fifty-caliber machine guns so its crew could defend themselves against the enemy fighters sent against them. For this reason it was called the Flying Fortress.
But the B-17 wasn’t invincible. Over 4000 of them were lost in combat with the loss of over 45,000 crewmen. They were flown in huge flights of up to a few hundred planes, towards target areas known to be defended by antiaircraft artillery and fighters, and these large gatherings of aircraft, sometimes called “aluminum overcast” (as one surviving B-17 is called), were easy targets. Missions over defended areas of Europe frequently resulted in losses of ten to fifteen percent or more of the bombers.
Though the loss rates were often very high, the B-17 gained an almost mythic reputation as a survivor, a plane that could take horrendous damage but still manage to get home safely. There are many, many stories of badly damaged B-17s, some missing the entire nose, some missing parts of wings or tails, or with large holes in the sides of the fuselage, coming in for landings back at their bases in England or Italy. One plane was so badly damaged that the other airmen in the formation declared that they had seen it destroyed, only to see it show up, late and heavily damaged, at its home base in England. One of this plane’s crewmen said, “The plane can be cut and slashed almost to pieces by enemy fire and bring its crew home.”
I had signed up for a flight on “Nine-O-Nine,” a restored B-17 named for a famous B-17 which had gone through 140 missions without being damaged or aborting its mission. It was flying out of Alliance Airport in Ft. Worth, as part of the Wings of Freedom tour of three historic World War II aircraft, also including a B-24 and a B-25. These planes are survivors too, this B-17 being only one of about fourteen of the original 12,700 B-17s manufactured that still are in flyable condition. I was going to be flying on a plane that is older than I am. A mobile, flyable piece of history.
While we were at the airport, watching the planes come in for their landings, we stood near a woman about our age, who was watching intently. We talked to her and asked if she, too, was taking a flight. She wasn’t but was very interested in the B-24 “Liberator” bomber that was coming in. Her dad had been a bombardier on a B-24 during World War II and had died in a crash in New Guinea before she was born. Recently the military found the wreckage of the aircraft and recovered a couple hands full of human remains, all that was left of the crew, but they were brought back and the family was finally able to bury their lost airman. She wanted to board the B-24 and sit in the bombardier seat. She said she’d probably bawl the whole time.
To fly on the B-17, I had to sign a waiver. The waiver signed away my rights (or Kathy’s, actually) to sue in case the plane didn’t have a happy landing after taking off. The waiver form said that the plane had a “provisional” certification from the FAA, which means, I suppose, that it’s known to take off and land safely most of the time but doesn’t meet current safety standards. I signed it, as did the few other “passengers” that were going along. We climbed into the plane, quite literally because there were neither steps nor gangway. We grabbed a handhold over the rear hatch and lifted ourselves through the opening. The plane obviously wasn’t made for passengers or comfort, so it’s neither heated (which is why they invented "bomber jackets") nor pressurized. Plus, there are no seats except those for the pilots and a couple of the original crew, like the radioman and the bombardier. We sat on the floor in various places around the plane as we took off, strapped to the sidewalls of the bare aluminum fuselage with antique military seat belts. They told us that once we were airborne we could unbuckle and roam around the plane, but that we shouldn’t lean on the hatch we had entered through, as it was made for easy exiting and could give way under pressure. No one went near it during the flight!
I had ear plugs for the flight, as four 1200 horsepower air cooled engines make a lot of racket. And I had multiple layers of clothing, because the ground temperature was in the 40s when we took off, and it was even cooler up in the air (and the bomber has an open hatch on top through which you can stick your head into the 160+mph slipstream if you want, which of course also lets in a very cool blast of air). But what I needed, I found out, was a “hard hat.” Climbing through the hatches and clambering among the bomb bays and passages, I kept banging my head on metal edges. No serious damage was done, but it hurt. It was quite the adventure to be crawling through this ancient aircraft, sitting in the bombardier’s seat, manning the waist guns or even looking out the top gun turret, as it flew over north Texas. Too soon we were given the signal to re-buckle in our takeoff positions and prepare for landing.
Tom Landry is an icon in Texas. While I was living in Texas during my med school years and beyond, he coached the Dallas Cowboys, back in the glory years when the media declared them to be “America’s Team.” At least once, during every broadcast game some announcer would introduce him as “the only coach the Cowboys have ever had.” He coached the team during some great years but was unceremoniously fired when Jerry Jones bought the team many years ago. Well, Tom Landry died of leukemia about eight years ago, and each year there is a leukemia benefit in Dallas in his name. And Tom Landry flew B-17s during WW II, though that wasn’t ever mentioned by the sportscasters. He flew thirty missions in these planes and survived a crash landing in Czechoslovakia during the war. Additionally, his older brother Robert also flew B-17s and was killed in a crash.
Meanwhile, my bone marrow has been doing its best to survive the first round of chemotherapy, after having been intentionally but heavily damaged. I told you that I’d be getting daily doses of Neupogen, which I’ve been giving to myself after the nurse “certified” me in giving myself subcutaneous injections. After three days of Neupogen my white count had risen from a total of 2,400 with only about 360 neutrophils and 700 lymphocytes, to a total count of 16,900 with 12,900 (!) neutrophils and 1,100 lymphocytes. So the Neupogen worked very well, as it should at $400 a shot (made by Amgen, if you want to know). It raised my “good guys” significantly with only a very small rise in the number of lymphocytes. If my marrow survives, I survive. I saw my doc here in Denton on Friday and he pronounced me well enough to begin Round Two. And so we will. My appointment is a little before Nine-O-Nine on Monday morning and off we’ll go.
Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/
B-17 pictures below:
http://www2.snapfish.com/share/p=54691205104447181/l=352500024/g=28835691/otsc=SYE/otsi=SALB
Wednesday, March 5, 2008
Of Anniversaries and Life's Celebrations
Dave’s Great Adventure, Book Three
Chapter 1, Verse 7
March 5, 2008
Of Anniversaries and Life’s Celebrations
We all celebrate anniversaries of various types. Some are national anniversaries, like the Fourth of July or the remembrance of D-Day, and the like. But most of the anniversaries we celebrate are more personal. The one we most commonly celebrate is our birthday, for if we hadn’t survived that trip into our world we wouldn’t have the annual gathering of friends and family with the cake, candles and gifts, and the ritual of having songs sung badly to us, sometimes with references to monkeys and zoo smells, too.
And there are other anniversaries. The anniversary of the start of a job, when you might get a small raise in pay, or the anniversary marking many years at that job, when you might be able to hang it up and retire. And there are the dates we remember because they are special only to us; the memory of a first date with our future spouse, or the time we moved to a far-off place (“Omigosh, has it really been twenty-six years since we moved to Frankfurt?”), or more importantly, the remembrance of a wedding anniversary, a most important date that husbands fail to remember only under pain of icy stares and a curt “Nothing” as the answer to the question, “What’s wrong?”
I was reminded of anniversaries again this week. I joined many of our teammates from TNT at a couple of training sessions, staying distant from those who were sniffling or coughing. Kim is one of our teammates and was there. As of a couple of weeks ago she is three years out from her treatment for a lymphoma and celebrated a clean bill of health from her doctor, still having no signs of the disease. The team threw her a party, for few things are more important when you’ve had cancer than the celebration of your victory over that disease. And I also saw Ethan this Saturday morning at training near Grapevine Lake, where the team runs each weekend. Ethan is nine years old and is about to celebrate his sixth year in remission, after having been treated for leukemia when he was but three years old. He’s doing just great.
Ethan and I share a sixth anniversary. That Saturday when I was out with the team marked almost exactly six years since I found out that I had leukemia. Our anniversaries are a bit reversed however, as he’s celebrating six years of being disease free, whereas I’m celebrating six years of having the disease. Now, you might not think of that as something you’d normally want to celebrate, but to me it is. You see, when I first saw my oncologist back in early 2002, he told me the average survival with my disease was about six to ten years. Pessimist that I am, I zeroed in on the six year figure, figuring that’s when I was scheduled to die, in 2008. Many of the things we did subsequent to my visit with my doctor were based on that assumption, including moving to Texas to be near family and buying a home in a retirement community so Kathy would have built-in friends, neighbors and activities when I died this year.
I’ve spent my anniversaries with ups and downs in the course of managing my disease. On my first anniversary, in 2003, I was in a great remission, after having completed four cycles of the brand new FCR (Fludara, Cytoxan and Rituxan) chemotherapy regimen. But by my 2004 anniversary, I had started to relapse and underwent more intense chemotherapy and a stem cell collection. 2005 was good. I was in remission again, but found out six months later that I was relapsing yet again. The 2006 date was marked by watching my white count slowly climb, though it was doing so very slowly at the time. By 2007, however, it was starting to climb more rapidly and it was time to do something. So, on my 2008 anniversary, I’m celebrating six years of living with this disease and doing just about as well as one can do when you have leukemia. I’m still alive and death is apparently not imminent. And I’m celebrating being able to try out a new course of therapy for my disease. And just what should I do to celebrate this anniversary?
Our younger son asked why we were doing the FCR again, when I had relapsed within a year of finishing using it years ago. Fair question. First of all, there is a small subset of folks who have been given the FCR and seem to have been cured. Years after their treatment with this regimen, they have no signs of the disease and even very sensitive testing shows no molecular evidence of CLL. The folks at MDA have told me on several occasions that they think we stopped too soon when we quit after only four cycles back in 2002, the implication being that I might have had a longer remission or even achieved one of those possible cures if we’d been more aggressive. Further, the testing of this regimen against other “standard” treatments for relapsed CLL shows that it has become the best available regimen, achieving the longest remissions.
So, on this anniversary we’re using FCR again and, as noted multiple times, adding the drug Avastin to the regimen. It’s important to remember that the Avastin has not been used in CLL before and its addition to the FCR is not designed to effect a cure, but rather to hopefully help me get into a deeper and more durable remission, during which time a cure may be found. Remember that Dr. Keating has sort of “promised” me a cure within my lifetime.
Meanwhile, things are going sort of as expected, but not really according to plan. My white count dropped dramatically after my first series of infusions, as I’ve previously reported. That’s what the chemotherapy is supposed to do, but the white cell numbers dropped further than I, and apparently the staff here in Denton, expected. The low point, or nadir, is generally about 10-14 days from the infusions. So, we were expecting a “bounce” in my numbers this week, which is now three weeks from the start of my infusions in Houston. Surprise! My numbers are continuing to drop. My white cell count as of Monday was 2,400 with only 900 neutrophils. Remember that I had about 1,400 neutrophils last week. Therefore, most of the drop in the last week was in neutrophils, which are the white cells we want to protect since they kill off the bacteria that surround me at all times and attempt to invade my body every day. This continued drop is likely an Avastin effect.
With that low count, which was done by cell-counting machine, the lab followed up with a more accurate manual count, just to be sure of what was going in. The manual recount (sounds like election stuff, huh?) came up with a neutrophil count of only 360!
That low count apparently triggered some phone calls to Houston and discussions about the next step. It first of all is hard to imagine giving me more chemotherapy when the first round has damaged and depleted my marrow so extensively already, yet I’m scheduled to start again next Monday, the 10th. Secondly, if I get more drugs starting on Monday, should the doses be reduced? And lastly, should I be given injections of white cell growth factors (Neupogen) to help bring my neutrophil count back up?
Last things first. I mentioned the white cell growth factor in my last letter. I’ve had it in the past, when my counts were very low, but the use is controversial, because though the drug is designed to stimulate the growth of neutrophils (good!) it can also stimulate the growth of CLL cells (obviously counterproductive). But first I need to survive the treatments. So, the “art” of medicine came to the fore again, trying to balance the good and the bad, and as of Wednesday I’m getting shots of Neupogen daily, for at least a few days (at about $400 a shot). We’ll see what my counts are doing by the end of the week when I see my doc in preparation for the next round.
And the folks at MDA said that, no, they wouldn’t stop the infusions or reduce the dosages if my counts are depressed but they would consider waiting longer between rounds of infusions. We’ll have to wait until next Monday to see if my white counts have recovered enough to continue for now, or whether we need to wait a few days or a week or more. Stay tuned, as this might get interesting.
I received a number of nice messages from friends and family after my last letter. Our neighbor and good friend Bonnie checked in with a question about whether I was sharing all my self-medication regimens with my docs. Good question. They’ve asked about every single thing I’m taking; supplements, baby aspirin, Motrin, calcium, Imitrex, etc., so they know about all the drugs I might use, but I hadn’t told them specifically what combinations I use on occasion, like when I had the miserable headaches after the first round of infusions in Houston. Speaking of which, I recalled having a similar situation with horrible headaches at some point during my first round of FCR and needing more than usual amounts of drugs to knock it out. I looked through my old letters and found that I had just about the same reaction and took just about the same combination of drugs just after my first infusion of just FC back in July 2002, even before I had the Rituxan. So, I can’t blame the Rituxan but rather the destruction of billions and billions of white cells for that lousy headache.
In the last letter I told you I’d heard from my step-brother/cousin Tom, down in Florida. Nobody even asked about that tangled, hillbilly description of our relationship. Well, just to make things more interesting, this week I heard from Charlotte, up in Iowa, who is my double first cousin, once removed. Charlotte told me that my descriptions of what was going on with my treatments were very educational and she enjoyed reading about them. She also mentioned how sad it was watching the video clip I attached, about the professor who was dying of pancreatic cancer but nevertheless continued to talk about the great things he had enjoyed about his life. Yes, it was sad. I think he is an exceptionally brave guy and I hope I can be like him.
And I had just sent out the last letter, with the description of “Cin Chili” sold by Cindy, the sister of our friend in Colorado, when Kathy’s sister wrote that she had just seen Cindy on the TV in Albuquerque and that she was in town at a Fiery Foods Festival. So, Carol and Frank went to the festival, got their taste buds scorched by sampling copious amounts of spicy goods and bought some Cin Chili mix and a batch of prepared Cin Chili too.
We heard from Bobbie again. Bobbie lives in El Paso and has been a friend for many years, as she was our realtor when we were in Germany and were renting out two homes in that town. Bobbie is a feisty German gal and said she was sending some of her guardian angels to be with me and turn everything around for the best. She said that the Germans were stubborn and she was sending stubbornness to me as well to give me the strength to fight on and win. There’s a lot of German blood in me too, from my mom’s side of the family. My wife has always said I was stubborn. That’s why, I guess.
We heard from Larry this weekend, but not with an e-mail. Larry has been my financial advisor for about fifteen years or so, though I probably frustrate him because I’m a lazy investor, a buy-and-hold kinda guy, despite his best attempts to get me going and moving money around as the markets change. But, omigosh, that takes so many decisions, Larry! Some folks who believe in astrology would say that’s because I’m a Libra which makes me indecisive. Whatever. Larry sent us a box of home-made chocolate chip cookies from San Antonio, cookies he and his wife Ginny made. Thanks so much, Larry. They’re almost gone already.
And of course, I’m still getting cards from Joan.
I better wrap this up and get it in the mail. So, what am I going to do for my anniversary, the one I mentioned a long time ago? Well, I’m going flying. An antique B-17 bomber is coming to town on a “heritage tour” and they offer flights for those who want to go up in it or the other plane on the tour, a B-24. I’ve been trying to get on one of these flights for years but have missed out over and over, either because I wasn’t in town when they came through Denver or Dallas/Ft. Worth or because they were booked up when I finally realized they were in town. This time I found out in time and have reservations on Friday afternoon to fly on the “Nine-0-Nine,” a restored B-17. I’m not sure if most of you, except for my friend Peter in Denver, would think this is cool, but I’m really looking forward to it.
Enough for now. I’ll be back to tell you about what we’re going to do with my low white counts and the plans for more chemotherapy when we know something.
Dave
dreck@prodigy.net
Chapter 1, Verse 7
March 5, 2008
Of Anniversaries and Life’s Celebrations
We all celebrate anniversaries of various types. Some are national anniversaries, like the Fourth of July or the remembrance of D-Day, and the like. But most of the anniversaries we celebrate are more personal. The one we most commonly celebrate is our birthday, for if we hadn’t survived that trip into our world we wouldn’t have the annual gathering of friends and family with the cake, candles and gifts, and the ritual of having songs sung badly to us, sometimes with references to monkeys and zoo smells, too.
And there are other anniversaries. The anniversary of the start of a job, when you might get a small raise in pay, or the anniversary marking many years at that job, when you might be able to hang it up and retire. And there are the dates we remember because they are special only to us; the memory of a first date with our future spouse, or the time we moved to a far-off place (“Omigosh, has it really been twenty-six years since we moved to Frankfurt?”), or more importantly, the remembrance of a wedding anniversary, a most important date that husbands fail to remember only under pain of icy stares and a curt “Nothing” as the answer to the question, “What’s wrong?”
I was reminded of anniversaries again this week. I joined many of our teammates from TNT at a couple of training sessions, staying distant from those who were sniffling or coughing. Kim is one of our teammates and was there. As of a couple of weeks ago she is three years out from her treatment for a lymphoma and celebrated a clean bill of health from her doctor, still having no signs of the disease. The team threw her a party, for few things are more important when you’ve had cancer than the celebration of your victory over that disease. And I also saw Ethan this Saturday morning at training near Grapevine Lake, where the team runs each weekend. Ethan is nine years old and is about to celebrate his sixth year in remission, after having been treated for leukemia when he was but three years old. He’s doing just great.
Ethan and I share a sixth anniversary. That Saturday when I was out with the team marked almost exactly six years since I found out that I had leukemia. Our anniversaries are a bit reversed however, as he’s celebrating six years of being disease free, whereas I’m celebrating six years of having the disease. Now, you might not think of that as something you’d normally want to celebrate, but to me it is. You see, when I first saw my oncologist back in early 2002, he told me the average survival with my disease was about six to ten years. Pessimist that I am, I zeroed in on the six year figure, figuring that’s when I was scheduled to die, in 2008. Many of the things we did subsequent to my visit with my doctor were based on that assumption, including moving to Texas to be near family and buying a home in a retirement community so Kathy would have built-in friends, neighbors and activities when I died this year.
I’ve spent my anniversaries with ups and downs in the course of managing my disease. On my first anniversary, in 2003, I was in a great remission, after having completed four cycles of the brand new FCR (Fludara, Cytoxan and Rituxan) chemotherapy regimen. But by my 2004 anniversary, I had started to relapse and underwent more intense chemotherapy and a stem cell collection. 2005 was good. I was in remission again, but found out six months later that I was relapsing yet again. The 2006 date was marked by watching my white count slowly climb, though it was doing so very slowly at the time. By 2007, however, it was starting to climb more rapidly and it was time to do something. So, on my 2008 anniversary, I’m celebrating six years of living with this disease and doing just about as well as one can do when you have leukemia. I’m still alive and death is apparently not imminent. And I’m celebrating being able to try out a new course of therapy for my disease. And just what should I do to celebrate this anniversary?
Our younger son asked why we were doing the FCR again, when I had relapsed within a year of finishing using it years ago. Fair question. First of all, there is a small subset of folks who have been given the FCR and seem to have been cured. Years after their treatment with this regimen, they have no signs of the disease and even very sensitive testing shows no molecular evidence of CLL. The folks at MDA have told me on several occasions that they think we stopped too soon when we quit after only four cycles back in 2002, the implication being that I might have had a longer remission or even achieved one of those possible cures if we’d been more aggressive. Further, the testing of this regimen against other “standard” treatments for relapsed CLL shows that it has become the best available regimen, achieving the longest remissions.
So, on this anniversary we’re using FCR again and, as noted multiple times, adding the drug Avastin to the regimen. It’s important to remember that the Avastin has not been used in CLL before and its addition to the FCR is not designed to effect a cure, but rather to hopefully help me get into a deeper and more durable remission, during which time a cure may be found. Remember that Dr. Keating has sort of “promised” me a cure within my lifetime.
Meanwhile, things are going sort of as expected, but not really according to plan. My white count dropped dramatically after my first series of infusions, as I’ve previously reported. That’s what the chemotherapy is supposed to do, but the white cell numbers dropped further than I, and apparently the staff here in Denton, expected. The low point, or nadir, is generally about 10-14 days from the infusions. So, we were expecting a “bounce” in my numbers this week, which is now three weeks from the start of my infusions in Houston. Surprise! My numbers are continuing to drop. My white cell count as of Monday was 2,400 with only 900 neutrophils. Remember that I had about 1,400 neutrophils last week. Therefore, most of the drop in the last week was in neutrophils, which are the white cells we want to protect since they kill off the bacteria that surround me at all times and attempt to invade my body every day. This continued drop is likely an Avastin effect.
With that low count, which was done by cell-counting machine, the lab followed up with a more accurate manual count, just to be sure of what was going in. The manual recount (sounds like election stuff, huh?) came up with a neutrophil count of only 360!
That low count apparently triggered some phone calls to Houston and discussions about the next step. It first of all is hard to imagine giving me more chemotherapy when the first round has damaged and depleted my marrow so extensively already, yet I’m scheduled to start again next Monday, the 10th. Secondly, if I get more drugs starting on Monday, should the doses be reduced? And lastly, should I be given injections of white cell growth factors (Neupogen) to help bring my neutrophil count back up?
Last things first. I mentioned the white cell growth factor in my last letter. I’ve had it in the past, when my counts were very low, but the use is controversial, because though the drug is designed to stimulate the growth of neutrophils (good!) it can also stimulate the growth of CLL cells (obviously counterproductive). But first I need to survive the treatments. So, the “art” of medicine came to the fore again, trying to balance the good and the bad, and as of Wednesday I’m getting shots of Neupogen daily, for at least a few days (at about $400 a shot). We’ll see what my counts are doing by the end of the week when I see my doc in preparation for the next round.
And the folks at MDA said that, no, they wouldn’t stop the infusions or reduce the dosages if my counts are depressed but they would consider waiting longer between rounds of infusions. We’ll have to wait until next Monday to see if my white counts have recovered enough to continue for now, or whether we need to wait a few days or a week or more. Stay tuned, as this might get interesting.
I received a number of nice messages from friends and family after my last letter. Our neighbor and good friend Bonnie checked in with a question about whether I was sharing all my self-medication regimens with my docs. Good question. They’ve asked about every single thing I’m taking; supplements, baby aspirin, Motrin, calcium, Imitrex, etc., so they know about all the drugs I might use, but I hadn’t told them specifically what combinations I use on occasion, like when I had the miserable headaches after the first round of infusions in Houston. Speaking of which, I recalled having a similar situation with horrible headaches at some point during my first round of FCR and needing more than usual amounts of drugs to knock it out. I looked through my old letters and found that I had just about the same reaction and took just about the same combination of drugs just after my first infusion of just FC back in July 2002, even before I had the Rituxan. So, I can’t blame the Rituxan but rather the destruction of billions and billions of white cells for that lousy headache.
In the last letter I told you I’d heard from my step-brother/cousin Tom, down in Florida. Nobody even asked about that tangled, hillbilly description of our relationship. Well, just to make things more interesting, this week I heard from Charlotte, up in Iowa, who is my double first cousin, once removed. Charlotte told me that my descriptions of what was going on with my treatments were very educational and she enjoyed reading about them. She also mentioned how sad it was watching the video clip I attached, about the professor who was dying of pancreatic cancer but nevertheless continued to talk about the great things he had enjoyed about his life. Yes, it was sad. I think he is an exceptionally brave guy and I hope I can be like him.
And I had just sent out the last letter, with the description of “Cin Chili” sold by Cindy, the sister of our friend in Colorado, when Kathy’s sister wrote that she had just seen Cindy on the TV in Albuquerque and that she was in town at a Fiery Foods Festival. So, Carol and Frank went to the festival, got their taste buds scorched by sampling copious amounts of spicy goods and bought some Cin Chili mix and a batch of prepared Cin Chili too.
We heard from Bobbie again. Bobbie lives in El Paso and has been a friend for many years, as she was our realtor when we were in Germany and were renting out two homes in that town. Bobbie is a feisty German gal and said she was sending some of her guardian angels to be with me and turn everything around for the best. She said that the Germans were stubborn and she was sending stubbornness to me as well to give me the strength to fight on and win. There’s a lot of German blood in me too, from my mom’s side of the family. My wife has always said I was stubborn. That’s why, I guess.
We heard from Larry this weekend, but not with an e-mail. Larry has been my financial advisor for about fifteen years or so, though I probably frustrate him because I’m a lazy investor, a buy-and-hold kinda guy, despite his best attempts to get me going and moving money around as the markets change. But, omigosh, that takes so many decisions, Larry! Some folks who believe in astrology would say that’s because I’m a Libra which makes me indecisive. Whatever. Larry sent us a box of home-made chocolate chip cookies from San Antonio, cookies he and his wife Ginny made. Thanks so much, Larry. They’re almost gone already.
And of course, I’m still getting cards from Joan.
I better wrap this up and get it in the mail. So, what am I going to do for my anniversary, the one I mentioned a long time ago? Well, I’m going flying. An antique B-17 bomber is coming to town on a “heritage tour” and they offer flights for those who want to go up in it or the other plane on the tour, a B-24. I’ve been trying to get on one of these flights for years but have missed out over and over, either because I wasn’t in town when they came through Denver or Dallas/Ft. Worth or because they were booked up when I finally realized they were in town. This time I found out in time and have reservations on Friday afternoon to fly on the “Nine-0-Nine,” a restored B-17. I’m not sure if most of you, except for my friend Peter in Denver, would think this is cool, but I’m really looking forward to it.
Enough for now. I’ll be back to tell you about what we’re going to do with my low white counts and the plans for more chemotherapy when we know something.
Dave
dreck@prodigy.net
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