Dave’s Great Adventure
Book Three, PS1
December 19, 2008
So many things have happened…so many things.
I’ve tried to sit down on several occasions to write up an update on how I’m doing and what’s going on here but even after starting several drafts, I just couldn’t get anything substantial written. I was always too tired, too lazy, too busy or too chemo-brained (that’s my catch-all excuse when I fall behind in my responsibilities). Or maybe it’s been a combination of all those excuses.
I owe many apologies. First, to all my friends who have been wondering and worrying about me. I mean, when you’ve been getting regular updates from someone who has leukemia and who is going through chemotherapy, and then the messages suddenly stop, you have to wonder what has happened. A lot of unpleasant things are certainly possibilities in these circumstances. I’ve gotten some inquiries from some friends asking if I’m doing okay or not. I shouldn’t have put my friends in the position of having to ask.
Let me deal with that first. I am doing just great. I have been busy, I have been tired, and I have been lazy, but I am doing very well indeed. I am in complete remission from the leukemia (again). I had another bone marrow biopsy at M. D. Anderson in Houston in September and they could find no evidence of residual disease for now. That’s the very, very good news. The chemotherapy wiped my marrow clean. Now, the other side of that coin is that they also could also find almost no B-lymphocytes. All my leukemic cells are abnormal B-lymphocytes so it’s good that they are gone, but normal B-lymphs are the cells that make antibodies. So I need some of those guys. But even though the docs at M. D. Anderson couldn’t find many in the bone marrow specimen, I know I must have enough around somewhere in my body because I haven’t gotten terribly sick as I would if I had absolutely no B-lymphs left and wasn’t making any antibodies.
My blood counts, for those of you who may follow this stuff, remain low. That’s to be expected as the chemotherapy works by damaging the stem cells in the bone marrow and lymph nodes that make blood cells. So my red blood cell count is a bit low at 34% (normal for a male is more like 45%), and my platelets are low at 79,000 (normal being 150,000 to 350,000 or so) but that’s up from the 40,000 they were at the end of my chemotherapy. I was getting a lot of bruises when the platelet count was that low, but I’m getting far fewer now that those numbers have recovered a bit. And my white blood cell count, which was almost 100,000 when we started the chemotherapy last February, is staying between 2,000 and 3,000 which is also lower than normal. But that’s a good thing, under these circumstances.
I don’t know how long I can expect to remain in remission. The first time I had chemotherapy I was in remission for a year. After my second course of chemo I was in remission for about 18 months. But both times, when the disease returned it did so very slowly and I didn’t require more drugs for many months even after we first found evidence of recurring leukemia.
I have regained much of my strength, and faster than I expected to, but I’ll talk about that a bit more in telling you what I’ve been up to. What I haven’t regained totally is my mental capacities, because of the “chemobrain” I sometimes joke about. I feel slow mentally much of the time, which really is part of the problem with trying to write up a coherent letter. I can have many thoughts in my head but they routinely disappear when I sit in front of the computer to try to write. Plus, I can’t keep more than one thought in my mind at a time. I can’t multi-task, and that’s one major reason I retired. I couldn’t keep several thoughts in my mind at one time and you have to be able to do that when you’re taking care of patients. You have to remember what the patient is telling you, what questions you need to ask, what tests you need to order, what drugs to order, what instructions you need to give the patient, and more. I noticed some problems with this after my first round of drugs back in 2002 but it wasn’t too bad. After my second round in 2004 it got worse and I ultimately couldn’t keep up safely and had to leave my job.
I was feeling like the mental fog was lifting somewhat a couple years after I retired, but now it seems to have returned. Fortunately, my new job as a retired guy doesn’t place too many strains on me. I do have problems remembering things and I can’t tackle more than one task at a time, but other than that things aren’t too bad.
Back to the apologies; I want to apologize to so many of you who helped me raise money for the Light The Night walk that Kathy and I and our family did in October. My intention was to send each of you a personal thanks but I couldn’t keep up and most of you only got the automatic response from the Leukemia and Lymphoma Society. Plus, many of you were subjected to my false starts and erroneous letters when I was trying to send out my requests for donations. I really was in a fog! But despite my mental fog and e-mail missteps and with your help we raised over $3000 for the LLS. Thank you for all your help.
The last time I sent out an update, in July, I was in the midst of my last round of chemotherapy and my step-dad had died. The timing of my infusions was unfortunate as I wasn’t able to go to Iowa to be with Mom and the family during this time. So, I stayed in Texas and recovered with much the usual side effects and over much the same length of time, with the weakness, headaches, fatigue and so forth.
About a month after my step-dad died Mom decided she wanted to move to Texas. We had discussed this possibility in general terms in the past, as none of her kids live in Iowa and because most of her immediate family now live in Texas, clustered around the Dallas/Ft. Worth area. So we’re now happy to have my mother living in Denton in a senior’s apartment complex and being close enough to visit on a frequent basis, after years of only seeing her for a few days a year during the time she lived in Iowa. Mom has been very busy getting adjusted to the new surroundings; she’s had to get new doctors, a new dentist, new banking, new health insurance, new friends and a new way of life. But she’s settling in pretty well, especially considering all the changes that she’s gone through since Lloyd died in July.
As I recovered from my last round of drugs, I started to walk around the neighborhood, as I had frequently done before the beginning of my drug regimen. I enjoy being outside and need the exercise anyway. I found, however, that having been pretty much sedentary for the six months of the chemotherapy had done bad things to my muscles. Just walking around the neighborhood was a chore, and my legs were sore after my walks. But gradually I noticed my stamina increasing and the muscle soreness decreasing and I was able to walk longer and longer distances. By early October I was able to walk about three miles without much difficulty. This was about the time that we did the Light The Night Walk, which is just a couple of miles, short enough that the grandkids walked it with us.
The week after the Light The Night walk Kathy and I went to Colorado for a very short trip to cheer for our friends Lou and Joan Henefeld who had signed up and trained for the Denver Marathon, working through the Leukemia and Lymphoma Society’s Team in Training (TNT). They had never done a marathon (26.2 miles) before yet they worked for months to get physically ready for the marathon and they worked regularly sending out letters and e-mails to raise funds for the LLS. They did this all in my honor, as a friend and survivor, which I found very humbling. They did just great walking the marathon course and between them they raised over $8000! They are just amazing folks.
Well, I started thinking about what they had done and wondered if I could even come close to their efforts. I started thinking that maybe at some point I could at least do a half-marathon, a distance (13.1 miles) I hadn’t walked in several decades. But I had been walking more and more easily in the previous month or two and was able many days to do three miles, so I started to get serious about working up to a half-marathon.
A few weeks after we returned home from cheering on Lou and Joan, and their TNT teammates, as they ran and walked the marathon course in Denver, I signed up for a 5K (five kilometers, or about 3.1 miles) run sponsored in Ft. Worth by TNT. I did fine in that event, though only with a very loose interpretation of the operative word “run.” I walked at a brisk pace and finished the short course in about 46 minutes or so. I was amazed to see that a number of my teammates for TNT got up early on Sunday morning and drove to Ft. Worth to cheer me on! Now, the fact that I did the “run” in blue jeans, long-sleeved knit cotton shirt and deck shoes was a source of amusement to my TNT teammates so I’ve had to go out, at Kathy’s (and our coach’s) instruction, to get more serious running shoes and clothing.
So, after the 5K event I was walking with TNT teammates who were getting ready for the White Rock Marathon here in Dallas. I found that they were also forming some relay teams and that I might be able to get a spot on one of them. I was happy to offer to be a part of a team if a position opened up, which it did, just about two weeks before the marathon. I was given a five mile leg of the marathon, which was a distance I hadn’t worked up to yet, and didn’t get to do before race day, but last Sunday morning, our team (“Survivors”) completed the race and I did my first five mile walk in many years. We were called “Survivors” as the team consisted of me, four months out of chemotherapy, another blood cancer survivor named Niki, who was just six months out of a wheelchair, a young man with cystic fibrosis (which didn’t really slow him down), and two other guys who had great running times and kept up our overall pace. I was happy to be part of this team and to be able to complete my assigned five miles.
Which brings me back to goals. At the first of this year my immediate goal was to get through the chemotherapy regimen which I was facing and to hopefully get into remission. That goal has been achieved in fine style. I hope it lasts for a few years. And now that I have been able to complete my five kilometer and five mile events, I have set a new goal, for myself, that of doing a walking half marathon in the coming year. To that end I will be walking longer and longer distances in the coming months to see what my limits are. I hope I can soon report back to you that I have been able to complete a half-marathon before the end of next year.
And that’s just about all the news from here. I’ll try to get periodic updates out to you, my friends, and let you know how things continue to go as I get my monthly blood counts and every-three-month doctor appointments.
And my next immediate goal is to get Christmas cards written!
Merry Christmas, Happy Hanukah and Happy New Year to all of you,
Dave
dreck@prodigy.net
Friday, December 19, 2008
Saturday, August 9, 2008
A Very Short Update
Dave’s Great Adventure, Book Three
Chapter Six, Verse One
August 9, 2008
I want to send out a quick status report to let all of you know how I’m doing. When I’m silent too long many folks, with good reason, start to worry that I’m not doing well and that there are problems. I’m actually doing well, but there have been problems.
The day I sent out my last message, I had to cut it a bit short and didn’t spend a lot of time polishing it, as I typically like to do, and I haven’t sent out anything since. The reasons were twofold; that very day my platelets finally got “high” enough, at about 80,000, to allow more treatment (remember that normal is about 150,000 to about 350,000 or so). But even at my relatively low level, the folks at M. D. Anderson allowed me to start my sixth round of treatment. And so I did, and I got sick, but now I’m done with all six rounds of this new, experimental treatment. I want to tell you a bit about this last round later, when I have more time.
The second reason I have been silent for the last three weeks is that the day I started my last round of chemotherapy my step-dad, a wonderful and kind gentleman, was discharged from the hospital after a prolonged admission of about two months, but he was discharged to hospice care. Then, the next day, while I was getting my Day Two infusions, he died.
My infusion schedule could have not been worse under these circumstances. If I hadn’t started the infusions we could probably have postponed them, but since I had started them, we couldn’t stop in the middle of the schedule. So I was sick during the time I wanted to be in Iowa with my Mom and my family and relatives for the funeral. My step-dad was such a nice guy that I wanted to be there to show my deep respect for him, but couldn’t. I hated to miss the celebration of his long and wonderful life. He died at the age of ninety-five and I’m pretty sure that, except for the last couple months of his life when he was confined to a hospital room, he enjoyed every year of his full life. I hope to tell you about this remarkable man in a future verse.
Since his death there have been many things the family has had to deal with, one of the primary things being preparing to move our Mom and her belongings to Texas, where much of her family lives. Three of her five children, seven of her ten grandchildren and both of her great-grandchildren live in Texas, and most are clustered around the Dallas-Ft. Worth area, so we’ll be bringing her to town next week. I know she’ll miss her many friends and relatives in Iowa, where she was born, but it’ll be nice for all of us here in Texas to be able to see her so much more often. And even though she was born in Iowa, she’s really a Texan at heart as she lived for decades in San Antonio where she acquired a taste for Tex-Mex cooking. She’ll find plenty of that around here.
Anyway, I’m still recovering from the last round of chemotherapy, am back on the Neupogen because of the usual and expected low while cell counts, and am tired more than I’d like to be, but all in all, I’m doing just great. I’m looking forward to getting back to a more normal life in the coming months, since I won’t be getting whacked with more chemotherapy when I start feeling well this time. I’m going to stop this message at this point and leave you with the promise that in the coming weeks I’ll completely fill you in on my last cycle of poisons in painful, even excruciating, detail. So beware.
Dave
dreck@prodigy.net
“We’re all on the same journey; you can choose to do it with joy.” Sally Hughes Smith, (as quoted in a recent column by Kathleen Parker of the Orlando Sentinel)
Chapter Six, Verse One
August 9, 2008
I want to send out a quick status report to let all of you know how I’m doing. When I’m silent too long many folks, with good reason, start to worry that I’m not doing well and that there are problems. I’m actually doing well, but there have been problems.
The day I sent out my last message, I had to cut it a bit short and didn’t spend a lot of time polishing it, as I typically like to do, and I haven’t sent out anything since. The reasons were twofold; that very day my platelets finally got “high” enough, at about 80,000, to allow more treatment (remember that normal is about 150,000 to about 350,000 or so). But even at my relatively low level, the folks at M. D. Anderson allowed me to start my sixth round of treatment. And so I did, and I got sick, but now I’m done with all six rounds of this new, experimental treatment. I want to tell you a bit about this last round later, when I have more time.
The second reason I have been silent for the last three weeks is that the day I started my last round of chemotherapy my step-dad, a wonderful and kind gentleman, was discharged from the hospital after a prolonged admission of about two months, but he was discharged to hospice care. Then, the next day, while I was getting my Day Two infusions, he died.
My infusion schedule could have not been worse under these circumstances. If I hadn’t started the infusions we could probably have postponed them, but since I had started them, we couldn’t stop in the middle of the schedule. So I was sick during the time I wanted to be in Iowa with my Mom and my family and relatives for the funeral. My step-dad was such a nice guy that I wanted to be there to show my deep respect for him, but couldn’t. I hated to miss the celebration of his long and wonderful life. He died at the age of ninety-five and I’m pretty sure that, except for the last couple months of his life when he was confined to a hospital room, he enjoyed every year of his full life. I hope to tell you about this remarkable man in a future verse.
Since his death there have been many things the family has had to deal with, one of the primary things being preparing to move our Mom and her belongings to Texas, where much of her family lives. Three of her five children, seven of her ten grandchildren and both of her great-grandchildren live in Texas, and most are clustered around the Dallas-Ft. Worth area, so we’ll be bringing her to town next week. I know she’ll miss her many friends and relatives in Iowa, where she was born, but it’ll be nice for all of us here in Texas to be able to see her so much more often. And even though she was born in Iowa, she’s really a Texan at heart as she lived for decades in San Antonio where she acquired a taste for Tex-Mex cooking. She’ll find plenty of that around here.
Anyway, I’m still recovering from the last round of chemotherapy, am back on the Neupogen because of the usual and expected low while cell counts, and am tired more than I’d like to be, but all in all, I’m doing just great. I’m looking forward to getting back to a more normal life in the coming months, since I won’t be getting whacked with more chemotherapy when I start feeling well this time. I’m going to stop this message at this point and leave you with the promise that in the coming weeks I’ll completely fill you in on my last cycle of poisons in painful, even excruciating, detail. So beware.
Dave
dreck@prodigy.net
“We’re all on the same journey; you can choose to do it with joy.” Sally Hughes Smith, (as quoted in a recent column by Kathleen Parker of the Orlando Sentinel)
Monday, July 21, 2008
Cinders
Dave’s Great Adventure, Book Three
Chapter 5, Verse 2
July 21, 2008
When our family was very young, many years ago, we did a lot of camping in a great big blue tent.
I’m not exactly sure how we came to be campers because neither my family nor Kathy’s were campers. I did enjoy some camping during my high school years in Germany, when a couple of friends and I would go out in the forests and just lay our sleeping bags on the ground. It wasn’t really legal to camp in the forests in Germany except in designated camp grounds, but we were out where no one could see us and we did no harm. We carried along Korean War vintage army C-rations, which were great fun for teenage boys to go through, because they all included small packs of cigarettes in them, plus petrified bars of dark chocolate which were close to being inedible. We also heated canned soup on Sterno stoves and ate some of the C-ration delicacies; lima beans and ham, beans and franks, turkey loaf, canned bread and the like. Sometime we got lucky and found canned peaches, a real treat. One night we heard a beast of some sort near our little encampment, coming slowly toward us. The rustling in the brush got closer and closer, scaring the heck out of the three teenage camper boys, until the “beast” entered our campsite and turned out to be a “ferocious” hedgehog, all of about ten inches in length. Hey, it SOUNDED a lot bigger than that. Hedgehogs, or “Igels,” as they’re called in German, are supposed to be good luck. I guess our luck that it wasn’t a wild boar!
Kathy and I were married in 1969 and just under a year later I was in Vietnam, leaving her with a newborn to care for. We didn’t plan things that way, but it was for the best as having a child to care for kept her mind off what I might be doing during my year away. I did a little “camping” during my time in Vietnam and was reintroduced to army C-rations, which hadn’t changed an awful lot. However, by now the army had also introduced LRRP (Long Range Recon Patrol) rations, which were freeze dried and lighter to carry around. They were naturally called “lurps” and were highly prized as they at least seemed to taste better than the more familiar C-rations.
When I returned to the states I was assigned, by choice, to the military hospital in El Paso, Texas, then called William Beaumont Army Hospital. As a “reward” for my service in the war I was made the aide-de-camp to the commanding general, supposedly a plum job but one I really hated. I really had very little to do except go around to various functions with the general and his staff and open doors, read certificates at promotion and award ceremonies, show VIPs around, and sit at my desk. Later I got promoted out of that job and got to work around the medical clinics and the emergency room, which crystallized my interest in medicine as a career.
But, on the weekends, if the general wasn’t busy with some function, Kathy and I would get into our light blue 1965 Plymouth Valiant and head north to the mountains and into the Gila National Forest, in southern New Mexico. This was the area Billy the Kid lived in during some of his younger years, and the Indian chief Geronimo and his braves lived in the area as well. The mountains were thick with tall pines and I loved driving the winding roads through the forests. There were also ancient Indian cliff dwellings with which I was fascinated and many, many beautiful places along the Gila River, which was more of a stream really, which beckoned with numerous camp sites. I thought we ought to camp there sometime.
Coincidentally one of the more senior officers at Beaumont was selling all his camping stuff, since he was graduating to a camping trailer. I was just a lieutenant, making maybe $1000 month or something so he gave us a great deal on all of his stuff. We bought all his stuff for $50 and that started our camping career. That’s where we got that big blue tent, which was maybe eight by eighteen feet, with three rooms. It was huge! We started camping in those beautiful spots along the Gila River when our eldest son was just over two years old, back when he was afraid of the stream for fear that there were sharks in it. How did he get that idea? We started camping along the banks of the stream, which was sandy with rounded river rocks. Across the water were large pines, cottonwoods and behind the trees magnificent yellow limestone cliffs rose up a couple of hundred feet. Later we camped all over southern New Mexico, west Texas and up into the Midwest in that huge tent. We had some great times, but Kathy also has very unpleasant memories of trying to cook on our small camp stove while we were camped in the Badlands of South Dakota in that tent and the wind was blowing probably fifty miles an hour.
But our favorite place to camp, above all others, was an isolated primitive area in the Gila (“HEE-la”) National Forest, about two hundred miles north of El Paso. It was great to camp there because our special place wasn’t really even a camp ground. Therefore it didn’t attract a lot of people. It was fifteen miles of bad road off any pavement and was hidden down in a small valley which had a small, intermittently running stream. We sometimes went the whole weekend without seeing another person or car when we were there. It was so absolutely quiet and peaceful that you could hear the hummingbirds zipping around and the calls of the other birds in the area. Since it wasn’t developed and there usually weren’t other folks around, the kids couldn’t hurt anything. They could throw rocks, build dams in the creek, and use the hatchet on tree stumps and to chop up firewood. They could eat with their hands, they could play in the stream, they could get messy, pee in the woods and generally do lots of the things that kids are told they can’t do around the house or in the neighborhood.
The central part of our camping area was always the campfire. It was invariably a primitive fire within a stone fire ring, and we used it for heat, cooking and entertainment. We’d cook hot dogs on a stick or burgers on a small grill which was perched upon the rocks. We could heat up chili or stews in pans set among the coals. After we ate, the kids just loved to play around the fire, adding firewood to make it burn larger and more brightly, melting plastic spoons into long white strands or watching molten blobs of the fiery plastic bomb the firewood, melting pennies on the rocks, and burning the trash we’d generated. It was tremendous fun. As the night got longer the fire would burn down but we’d stir it up to make it blaze again, enjoying the light and heat until it once again started to burn down. We’d stir the coals repeatedly until it got close to time to go to sleep, but by then the bonfire would have been reduced to just a few glowing cinders.
In a way, my marrow has now been reduced to a few cinders as well. We’ve been “burning” my marrow with the chemotherapeutic drugs for over five months now, but whenever my white counts dropped too low, we could “stir up the fire,” if you’ll allow me to use that metaphor, with Neupogen. Generally with a course of that white cell stimulating drug my white counts would go from perhaps 1,200 up to 25,000 or so in just a few days, and they would be mostly bacteria fighting neutrophils.
When I last told you about how things were going I mentioned that my white counts had dropped to about 700, about as low as they’ve ever been. That is a critically low number. In fact, it has been entertaining, in a dark sort of way, seeing the labs folks draw my blood, run it through the Coulter Counter, or whatever device they use these days to generate blood counts, and then quickly hand deliver the results to my nurse with the word “Panic” written at the top. Critically low or high lab test results are called “panic values” as they represent potentially life threatening problems. And you see, whenever the laboratory comes up with any such result, the folks there have the responsibility to get it to the patient’s doctor or nurse immediately. Not until they do are they relieved of the responsibility, and legal liability too, for handling the results. So, they hand-carry my lab test results right to my nurse with something like “Panic, Delivered to Nurse Johnson at 9:23am” written at the top of the sheet. That gets the monkey off their backs.
So, a couple of weeks ago my white counts were (again) at those “panic” levels. But I had planned to go to Colorado for a friend’s wedding the following week. Being closed up in an aluminum tube with 85 other people during a flight to Colorado with a white count of only 700 was a recipe for infections and wasn’t a good idea at all. I was actually surprised when the clinic folks didn’t immediately put me back on the Neupogen, as low as my numbers were, so I called the next day to ask if I could get my counts rechecked in a few more days, rather than waiting the normal full week, to see if the counts were recovering or not. That’s all it took for them to reconsider and put me immediately on the medication. So I went in to the clinic, got my prescription for $9000 worth of Neupogen (manufactured by Amgen) filled, paid my co-pay of $9.00 (amazing!) and went home to begin my daily injections.
And it worked, but not nearly as well as it had been. After the usual five days of injections, my white count was up, but only to about 5,000, not the usual 25,000. The “cinders” just couldn’t generate many white cells this time. But that was high enough, and actually in the normal range, so my doc let me fly to Colorado with “precautions.” I did carry a mask in my pocket and actually would have put it on if I’d seen any germs coming my way. Really! Since my counts generally drop fairly rapidly after I finish the injections, I tried to stay away from too many folks at the wedding, but it was really hard to do with so many old friends around. We also didn’t get out to see our Denver area friends while we were in town as we’d planned because the trip fatigued me more than I expected it to. I did okay, and didn’t get sick but probably wouldn’t have even thought about making that trip if it had been in the wintertime cold and flu season.
But back to the cinders; I’ve now taken a couple more courses of Neupogen since I got back from Colorado and my white counts are looking okay. But my platelets are still low. My marrow can’t make them right now. They’ve been low, in the 60,000 to 70,000 range ever since my last round of drugs. That’s too low for even the M. D. Anderson folks. I was to have started my sixth and last (!) round of chemotherapy last week, but on Monday, and again Wednesday and then last Friday, my platelets were too low. I’m going in again tomorrow to get a blood count and if my platelets have managed to creep up to at least 75,000, we’ll start the drugs flowing. I can’t wait! I say that both with sincerity and, at the same time, with sarcasm, as I don’t look forward to it, but I want to get it done.
The day after I sent out my last little letter an article came out in our newspaper, and likely yours too, questioning the cost-benefit value of Avastin. As I said, it has become very, very popular but is very, very expensive. It is now being used on many folks who really have no hope of survival but it extends their life by a short time, sometimes a few months. How much is a few more months of life worth? Can we put a value on it? Tony Snow was almost certainly taking Avastin for his bowel cancer. He’s one of the first I heard mention using drugs to turn a malignant condition into a chronic disease, yet he died recently, as you know. It’s not a magic drug which can cure everything. In fact, as I mentioned, it really doesn’t cure anything. Genentech sold $3.5 billion worth of Avastin last year. There are probably very few of us, certainly no one I know, who could afford to pay for the stuff on our own, so the taxpayers end up with the tab. How much can we afford?
I’ve got to cut this off. I’ve been trying to get this written for a week or so now, so I’m going to put a stop to it at this point and get it sent out soon. I’ll keep you updated as to how things go. More later….
Dave
dreck@prodigy.net
“Live everyday as if it’s your last and one day you’ll be right.”—Harry “Breaker” Morant, Australian Bushveldt Carbineers
Chapter 5, Verse 2
July 21, 2008
When our family was very young, many years ago, we did a lot of camping in a great big blue tent.
I’m not exactly sure how we came to be campers because neither my family nor Kathy’s were campers. I did enjoy some camping during my high school years in Germany, when a couple of friends and I would go out in the forests and just lay our sleeping bags on the ground. It wasn’t really legal to camp in the forests in Germany except in designated camp grounds, but we were out where no one could see us and we did no harm. We carried along Korean War vintage army C-rations, which were great fun for teenage boys to go through, because they all included small packs of cigarettes in them, plus petrified bars of dark chocolate which were close to being inedible. We also heated canned soup on Sterno stoves and ate some of the C-ration delicacies; lima beans and ham, beans and franks, turkey loaf, canned bread and the like. Sometime we got lucky and found canned peaches, a real treat. One night we heard a beast of some sort near our little encampment, coming slowly toward us. The rustling in the brush got closer and closer, scaring the heck out of the three teenage camper boys, until the “beast” entered our campsite and turned out to be a “ferocious” hedgehog, all of about ten inches in length. Hey, it SOUNDED a lot bigger than that. Hedgehogs, or “Igels,” as they’re called in German, are supposed to be good luck. I guess our luck that it wasn’t a wild boar!
Kathy and I were married in 1969 and just under a year later I was in Vietnam, leaving her with a newborn to care for. We didn’t plan things that way, but it was for the best as having a child to care for kept her mind off what I might be doing during my year away. I did a little “camping” during my time in Vietnam and was reintroduced to army C-rations, which hadn’t changed an awful lot. However, by now the army had also introduced LRRP (Long Range Recon Patrol) rations, which were freeze dried and lighter to carry around. They were naturally called “lurps” and were highly prized as they at least seemed to taste better than the more familiar C-rations.
When I returned to the states I was assigned, by choice, to the military hospital in El Paso, Texas, then called William Beaumont Army Hospital. As a “reward” for my service in the war I was made the aide-de-camp to the commanding general, supposedly a plum job but one I really hated. I really had very little to do except go around to various functions with the general and his staff and open doors, read certificates at promotion and award ceremonies, show VIPs around, and sit at my desk. Later I got promoted out of that job and got to work around the medical clinics and the emergency room, which crystallized my interest in medicine as a career.
But, on the weekends, if the general wasn’t busy with some function, Kathy and I would get into our light blue 1965 Plymouth Valiant and head north to the mountains and into the Gila National Forest, in southern New Mexico. This was the area Billy the Kid lived in during some of his younger years, and the Indian chief Geronimo and his braves lived in the area as well. The mountains were thick with tall pines and I loved driving the winding roads through the forests. There were also ancient Indian cliff dwellings with which I was fascinated and many, many beautiful places along the Gila River, which was more of a stream really, which beckoned with numerous camp sites. I thought we ought to camp there sometime.
Coincidentally one of the more senior officers at Beaumont was selling all his camping stuff, since he was graduating to a camping trailer. I was just a lieutenant, making maybe $1000 month or something so he gave us a great deal on all of his stuff. We bought all his stuff for $50 and that started our camping career. That’s where we got that big blue tent, which was maybe eight by eighteen feet, with three rooms. It was huge! We started camping in those beautiful spots along the Gila River when our eldest son was just over two years old, back when he was afraid of the stream for fear that there were sharks in it. How did he get that idea? We started camping along the banks of the stream, which was sandy with rounded river rocks. Across the water were large pines, cottonwoods and behind the trees magnificent yellow limestone cliffs rose up a couple of hundred feet. Later we camped all over southern New Mexico, west Texas and up into the Midwest in that huge tent. We had some great times, but Kathy also has very unpleasant memories of trying to cook on our small camp stove while we were camped in the Badlands of South Dakota in that tent and the wind was blowing probably fifty miles an hour.
But our favorite place to camp, above all others, was an isolated primitive area in the Gila (“HEE-la”) National Forest, about two hundred miles north of El Paso. It was great to camp there because our special place wasn’t really even a camp ground. Therefore it didn’t attract a lot of people. It was fifteen miles of bad road off any pavement and was hidden down in a small valley which had a small, intermittently running stream. We sometimes went the whole weekend without seeing another person or car when we were there. It was so absolutely quiet and peaceful that you could hear the hummingbirds zipping around and the calls of the other birds in the area. Since it wasn’t developed and there usually weren’t other folks around, the kids couldn’t hurt anything. They could throw rocks, build dams in the creek, and use the hatchet on tree stumps and to chop up firewood. They could eat with their hands, they could play in the stream, they could get messy, pee in the woods and generally do lots of the things that kids are told they can’t do around the house or in the neighborhood.
The central part of our camping area was always the campfire. It was invariably a primitive fire within a stone fire ring, and we used it for heat, cooking and entertainment. We’d cook hot dogs on a stick or burgers on a small grill which was perched upon the rocks. We could heat up chili or stews in pans set among the coals. After we ate, the kids just loved to play around the fire, adding firewood to make it burn larger and more brightly, melting plastic spoons into long white strands or watching molten blobs of the fiery plastic bomb the firewood, melting pennies on the rocks, and burning the trash we’d generated. It was tremendous fun. As the night got longer the fire would burn down but we’d stir it up to make it blaze again, enjoying the light and heat until it once again started to burn down. We’d stir the coals repeatedly until it got close to time to go to sleep, but by then the bonfire would have been reduced to just a few glowing cinders.
In a way, my marrow has now been reduced to a few cinders as well. We’ve been “burning” my marrow with the chemotherapeutic drugs for over five months now, but whenever my white counts dropped too low, we could “stir up the fire,” if you’ll allow me to use that metaphor, with Neupogen. Generally with a course of that white cell stimulating drug my white counts would go from perhaps 1,200 up to 25,000 or so in just a few days, and they would be mostly bacteria fighting neutrophils.
When I last told you about how things were going I mentioned that my white counts had dropped to about 700, about as low as they’ve ever been. That is a critically low number. In fact, it has been entertaining, in a dark sort of way, seeing the labs folks draw my blood, run it through the Coulter Counter, or whatever device they use these days to generate blood counts, and then quickly hand deliver the results to my nurse with the word “Panic” written at the top. Critically low or high lab test results are called “panic values” as they represent potentially life threatening problems. And you see, whenever the laboratory comes up with any such result, the folks there have the responsibility to get it to the patient’s doctor or nurse immediately. Not until they do are they relieved of the responsibility, and legal liability too, for handling the results. So, they hand-carry my lab test results right to my nurse with something like “Panic, Delivered to Nurse Johnson at 9:23am” written at the top of the sheet. That gets the monkey off their backs.
So, a couple of weeks ago my white counts were (again) at those “panic” levels. But I had planned to go to Colorado for a friend’s wedding the following week. Being closed up in an aluminum tube with 85 other people during a flight to Colorado with a white count of only 700 was a recipe for infections and wasn’t a good idea at all. I was actually surprised when the clinic folks didn’t immediately put me back on the Neupogen, as low as my numbers were, so I called the next day to ask if I could get my counts rechecked in a few more days, rather than waiting the normal full week, to see if the counts were recovering or not. That’s all it took for them to reconsider and put me immediately on the medication. So I went in to the clinic, got my prescription for $9000 worth of Neupogen (manufactured by Amgen) filled, paid my co-pay of $9.00 (amazing!) and went home to begin my daily injections.
And it worked, but not nearly as well as it had been. After the usual five days of injections, my white count was up, but only to about 5,000, not the usual 25,000. The “cinders” just couldn’t generate many white cells this time. But that was high enough, and actually in the normal range, so my doc let me fly to Colorado with “precautions.” I did carry a mask in my pocket and actually would have put it on if I’d seen any germs coming my way. Really! Since my counts generally drop fairly rapidly after I finish the injections, I tried to stay away from too many folks at the wedding, but it was really hard to do with so many old friends around. We also didn’t get out to see our Denver area friends while we were in town as we’d planned because the trip fatigued me more than I expected it to. I did okay, and didn’t get sick but probably wouldn’t have even thought about making that trip if it had been in the wintertime cold and flu season.
But back to the cinders; I’ve now taken a couple more courses of Neupogen since I got back from Colorado and my white counts are looking okay. But my platelets are still low. My marrow can’t make them right now. They’ve been low, in the 60,000 to 70,000 range ever since my last round of drugs. That’s too low for even the M. D. Anderson folks. I was to have started my sixth and last (!) round of chemotherapy last week, but on Monday, and again Wednesday and then last Friday, my platelets were too low. I’m going in again tomorrow to get a blood count and if my platelets have managed to creep up to at least 75,000, we’ll start the drugs flowing. I can’t wait! I say that both with sincerity and, at the same time, with sarcasm, as I don’t look forward to it, but I want to get it done.
The day after I sent out my last little letter an article came out in our newspaper, and likely yours too, questioning the cost-benefit value of Avastin. As I said, it has become very, very popular but is very, very expensive. It is now being used on many folks who really have no hope of survival but it extends their life by a short time, sometimes a few months. How much is a few more months of life worth? Can we put a value on it? Tony Snow was almost certainly taking Avastin for his bowel cancer. He’s one of the first I heard mention using drugs to turn a malignant condition into a chronic disease, yet he died recently, as you know. It’s not a magic drug which can cure everything. In fact, as I mentioned, it really doesn’t cure anything. Genentech sold $3.5 billion worth of Avastin last year. There are probably very few of us, certainly no one I know, who could afford to pay for the stuff on our own, so the taxpayers end up with the tab. How much can we afford?
I’ve got to cut this off. I’ve been trying to get this written for a week or so now, so I’m going to put a stop to it at this point and get it sent out soon. I’ll keep you updated as to how things go. More later….
Dave
dreck@prodigy.net
“Live everyday as if it’s your last and one day you’ll be right.”—Harry “Breaker” Morant, Australian Bushveldt Carbineers
Thursday, July 3, 2008
Uncharted Waters
Dave’s Great Adventure, Book Three
Chapter 5, Verse 1
July 3, 2008
Uncharted Waters
A few years ago I traveled to Antarctica with my brothers. We went aboard an ice-class ship to visit one of the most extraordinary and wonderful parts of our globe. That part of the world is a long way away and is out of the normal lanes of traffic, and it’s very hard to get there. It’s probably about 8,000 air miles from Dallas and takes about fifteen hours of flight time to get to Ushuaia, at the tip of South America, before you can get on the ship that takes two days of sailing across what can be the very rough waters of the Drake Passage, just to get you to the continent’s outer islands. Until a few years ago only about 250,000 people had ever set foot on the continent. It is an incredible voyage that few people have been fortunate enough to experience.
But in my mind, it’s very much worth the long, tiring trip. I have described Antarctica as “otherworldly” as it has scenery and vistas found nowhere else. There are barren islands, with black volcanic beaches littered with huge whale bones. There is a still-active volcano with a caldera about nine miles across. One side of the caldera has collapsed and so it has filled with sea water. Your ship can sail right in most of the time. And there you can, if you want, bathe in some hot springs on the black beach. Meanwhile, just yards away the Antarctic Ocean which fills the caldera is a very cold 32 degrees. Back at sea, there are huge, miles long (!) icebergs that your ship sails by, and millions of smaller icebergs and “bergy bits” that bounce off the sides of the ship as it plows through the ice-filled waters. The icebergs are mostly bright white, but there are also deep cobalt blue icebergs and ones with all manner of dark stripes in shades of black, brown and blue.
On many islands there are colonies of tens of thousands of varying species of penguins, who allow you to walk among them without any alarm whatever; they think you’re one of them since all their predators are either in the water or in the air. To them, if you walk, you’re a penguin. There are also seals by the hundreds, whales here and there, and albatrosses, petrels, terns, skuas and gulls. In the waters off the penguin colonies leopard seals, which survive by eating penguins, patrol back and forth, waiting for their next meal. The penguins know the leopard seals are there, but the penguins must eat too, so they gather by the dozens along the water’s edge, needing to get to the krill and small fish. They are afraid to enter the water, but finally the crush of penguins along the shore pushes a few in and then, quickly, they all go in, knowing that the leopard seal can catch but one. Meanwhile, while the adults are away, the petrels and skuas try to steal penguin chicks and strip away their flesh while they’re still trying to escape. Nature at its rawest.
You can take off your parka, because it does get “warm” in the bright Antarctic sun when you’ve been hiking for a while in deep snow, and sit in a snowbank at any of hundreds of locations along the coastline and look for miles and miles around you and see nothing but islands of black volcanic rock jutting from the dark indigo-blue water, and mountains all around covered with snow and ice. The views are simply stunning. The sea is filled with ice in all sizes and in uncounted fantastical shapes. As you survey the incredible panorama you notice that you hear nothing but the wind, the gentle surf and the ice it carries, softly grating against the usually rocky shore, and depending on where you are, you hear the humming calls of the penguins. There is no sound except that of nature. No airplanes overhead. No cars in the distance. No air conditioner compressors droning. No garbage trucks, no music from someone’s boom box, no dogs barking. There are no contrails in the sky, no roads, no buildings. It’s just you and your shipmates at the end of the world.
While moving among the various landing spots, the ship’s crew navigates by intense observation of the seas and shores, by radar and, I think by sonar too. They need to know exactly what is in the area and they can’t plot a course simply by following the sea charts, because we’re, as mentioned, at the end of the world. There are, in fact, maps of the area, but since we are so far from civilization, there has been no need to accurately survey the oceans. I visited the bridge during one of our sailings from one spot to the next and looked at the captain’s sea charts. I found out why I always saw one or two crewmen on the bridge looking out to our direction of travel with binoculars. It was extremely important that they were looking out at all times. All along our course, the sea charts warned, “Uncharted… uncharted… uncharted.”
And so I’ve also entered uncharted waters, in a way. I have now completed five rounds of chemotherapy, of a new and untested regimen which has been given to but six other patients before me (I have to presume the other six are doing reasonably well and that no one has died from the therapy because they haven’t stopped the clinical study). I’ve never completed more than four rounds and four months of chemotherapy in years past and that seemed like more than enough at the time. Four rounds were enough in 2002 to make my doc stop the drugs for fear that we were going to destroy my remaining stem cells. But this time we’re going on for a total of six rounds. I’m finding that things have changed a bit with my extended exposure to the various toxic substances I’ve been getting. The recovery from my Rounds Four and Five went pretty well once I got over the incredible fatigue that hits a few days after we start. I had most of the usual symptoms of shedding hair, fatigue, achy joints, hoarse voice, etc. But a couple of new symptoms turned up as well, this time. First, I have been starting to have small mouth ulcers, something I’ve been warned I might get since my first chemotherapy back in 2002, but I never had any. Well, things are catching up with me now. I had a cluster of small mouth ulcers, very much like small canker sores, for those of you who are aware of what those are, but they remained small and generally not too much of a problem, being more of an irritant than a seriously painful problem as so many other folks have experienced. They healed over in about ten days or so.
And another strange symptom has cropped up as well. I have been having an altered sense of smell and taste. More often than not I sense the odor of what is rather like stale cigarette smoke when I’m nowhere near cigarettes and in places where no cigarette has ever been lit, like in our home. And some flavors have become strangely unpalatable, like cola drinks, which now taste bitter and unpleasant. And it’s the same whether the drink is a diet or regular drink, so it’s not the sweetener as I supposed at first. Because of this we bought some raspberry flavored water for me to drink during my last round of drugs and I couldn’t drink it, it tasted so awful to me. When I mentioned this to my doctor he remarked, “Oh, yeah, that’s very common.” Now, I don’t remember ever hearing about this possibility but if I did I long ago forgot completely about it. Fortunately, most foods still taste normal so I can freely indulge in BBQ and Italian foods, among other high calorie dishes. I still haven’t lost any weight.
And another thing I’ve experienced is a small case of shingles, the sometimes very painful eruption of blisters on the body, generally on the trunk. Shingles is (are?) caused by the activation of the virus varicella zoster, which is the same virus that gave me chicken pox many decades ago. Well, when the chicken pox went away, the virus didn’t. It’s been hanging out in my body, like it is in yours if you’ve had chicken pox, just waiting for a chance to come back. Generally it comes back in folks when they’re stressed, very tired, elderly or, in my case, immunocompromised (AND I’m semi-elderly, stressed and very tired too!). Fortunately my case was very mild and short-lived, probably because I’m taking the anti-viral drug Zovirax on a daily basis.
Other things have happened as well. Remember Rosanne Rosannadanna? She was the Gilda Radner character who was always finding that things didn’t go just right. “It’s always something” she’d say. That’s what it was like trying to get my fifth round of drugs going. It was always something! First, when I saw my doc to get prepared for that round, my white count was lower than he wanted, so he put me back on Neupogen again. Then, just a couple of days later I was called and told that my magnesium levels were low and that I needed to take supplements. I wasn’t crazy about that idea as most magnesium products are also laxative in nature, but then I decided I could see certain advantages in that action, especially during the infusions, given the well-known “brick-making” side effects of the anti-nausea medications.
The day we were to start Round Five, more complications arose. My platelets, which had been low but adequate at about 80,000 (normal is about 150,000 to 300,000) the week before, were found to have dropped when we did the blood test to see if my white count had risen. The white count had indeed risen, but now we had other issues to deal with. Now, the guidelines of the Texas Cancer Center—Denton don’t permit chemotherapy if the patient’s platelets are below 100,000. M. D. Anderson is a bit more cavalier with their guidelines and permits the infusions down to a level of 75,000 platelets. My level had dropped to 74,000, just shy of the lower limit. Many phone calls between Denton and Houston ensued. Since my numbers had been trending downwards for a couple weeks, they decided to postpone the infusions and I had to come back in two days to see what the trend was. Well, two days later the count was still 74,000! More phone calls. Finally the folks at M. D. Anderson decided that though my count was low, it wasn’t still dropping and they gave the go-ahead for Round Five. And so we spent three days getting the usual infusions.
The recovery from that round wasn’t as bad as I’ve had in past rounds. First, the headaches have been much, much less severe and don’t last nearly as long since we made the change from the anti-nausea drug Zofran to Kytril. Secondly, the body aches over the last couple of rounds haven’t been nearly so bad and the joint pains actually seem to be resolving. And the days of extreme fatigue, which have routinely been knocking me flat for several days after the infusions are much fewer now. I really only had one really bad day after the last cycle.
But, my marrow is screaming for mercy! I can’t actually hear it screaming but I know it is. I get blood counts done weekly, and Monday, just three days ago, my counts were about as low as they’ve ever been. Remember that my white count was about 100,000 when we started this regimen in February, and that a normal white count is about 3,000 to about 10,000 or so. Well, as of Monday my white count was only 700, with just 100 of the bacteria fighters, the neutrophils. This is incredibly low, and I continue to wonder why I haven’t gotten any serious infections, abscesses, colds, etc. A large part of the answer is that Kathy watches me like a hawk, and is always ready with hand cleaner for me, she keeps me out of stores, opens the doors, etc., to protect me from too much exposure to environmental bacteria. But, just like anyone else, I have bacteria all over the outside and inside my body, yet my few bacteria fighters have done an amazing job of keeping me well, despite their depleted numbers. At any rate, we’re “calling up the reserves,” and so I’m on Neupogen again for five days to give my white count a boost.
If things continue to go well, I’ll be getting my sixth and final round of this chemotherapy in about two weeks and then all I have to do is recover from it and the extended effects of all six rounds of the drugs. I really am getting tired of always feeling tired, and of having to sit for hours in the infusion chairs, knowing what’s coming after, which is that I’m going to be sick again. And I’m tired of being confined to our home for a couple of weeks at a time and having to schedule our lives around my drug regimens. But, I am so fortunate to be able to participate in this remarkable drug study and find that it seems to be working so well. We really won’t know precisely how well it’s working, however, for many months, or even (hopefully) several years after we finish, because the measure of success will be to see if I can again get into remission and if I do, how long will the remission be. Will FCR/Avastin be better, the same or worse than the standard FCR regimen? Or just more expensive. That’s what we’ll be trying to find out.
I’ve told you about the bevacizumab, or Avastin, that I’m getting as part of my drug regimen at $30,000 a dose. And I’ve told you that it’s made by Genentech, the same folks that make the Rituxan I get at about $2000 or so per dose. Well, if you haven’t done so, you might take this opportunity to buy some stock in Genentech, because just in the few months I’ve been taking the Avastin, I’ve seen more and more indications for its use. First it was added for breast cancer, then cervical cancer, then other lung cancers and apparently almost any solid cancer, like bowel and pancreatic, etc. Now I have read that Senator Kennedy may be getting Avastin for his brain tumor. It’s even being used to treat non-malignant conditions like macular degeneration. Now, the thing about Avastin is that it doesn’t really cure anything, as far as I know. What it does is prevent the growth of the blood vessels that let tumors grow and spread. It contains the cancer, but doesn’t kill it. It turns a deadly disease into a chronic illness. So a patient is unlikely to get a six month course of Avastin and then go on their way, cured. More likely it will require repeated treatments for the rest of the patient’s life. And if that’s so, Genentech is going to sell a lot of their very expensive drug. And if the study I’m in, with Avastin being used for chronic lymphocytic leukemia, pans out as an improvement, there will be yet another huge market for the drug! Hey, the stock market is down these days. It’s an opportunity to get some stock cheap, probably (I say, without having looked it up to have any idea what it costs per share).
I received a most wonderful, kind and completely unexpected e-mail a couple of days ago from, as I told her, a “perfect stranger.” (She wrote back that she wasn’t perfect but had some folks fooled). This woman was a grade school friend of my younger sister some forty years ago and was trying to catch up with her using search engines when she stumbled into my blog. Part of what she wrote was: “Although you and I do not know each other personally, I felt compelled to email you…. Your blog is engrossing, touching, and, when one is just about overwhelmed at reading what you have endured, includes welcome levity. I admire your strength, attitude, sense of humor, and the fact that you allow yourself to feel & express your thoughts, fears, and emotions. I once read that we are all here to learn &/or teach in an attempt to perfect ourselves. (Kubler-Ross or Wayne Dyer I think) If that premise is true, you have had to learn way too much already. However, you are teaching many through your excellent example of how to deal with extreme adversity. And surely others will be helped by all that has been learned through your experience with CLL and Rx. It is my sincerest hope that your CLL will promptly slither back into remission and that your future will be filled with much more pleasant experiences.” I am very gratified to hear this from her and know that my experiences can be instructive and of interest to others, which is one reason I put it into the blogosphere (with much encouragement from our daughter). As I told her, also, I tend to be more open and honest in my writing many times than in person, where I will generally deny feeling crappy, tired, sick or whatever. The things I’m learning are the same things so many others before me have had to learn as well. If I can help other folks with CLL understand what they’re going to go through and what they can do in their own behalf I will be very satisfied with the blog. And I like her description of the CLL “slithering” back into remission.
Kathy and I are looking forward to being done with these treatments and being free to do the things we enjoy most, like travel. I already have a number of things in mind that I’d like to do, mostly in terms of trips to various places, but Kathy keeps warning about trying to do too much too soon. I will still be immunocompromised for many months and weak and with a reduced stamina for quite a while as well. I do need to pace myself, but it’ll be nice to be able to plan for the days when I can break out of my treatment confinement.
Speaking of planning, we’re going back to Antarctica again next February!
That’s all for now. But, of course, there’s always more, sooner or later.
Dave
dreck@prodigy.net
“Do a little more each day than you think you possibly can.”—Lowell Thomas
Chapter 5, Verse 1
July 3, 2008
Uncharted Waters
A few years ago I traveled to Antarctica with my brothers. We went aboard an ice-class ship to visit one of the most extraordinary and wonderful parts of our globe. That part of the world is a long way away and is out of the normal lanes of traffic, and it’s very hard to get there. It’s probably about 8,000 air miles from Dallas and takes about fifteen hours of flight time to get to Ushuaia, at the tip of South America, before you can get on the ship that takes two days of sailing across what can be the very rough waters of the Drake Passage, just to get you to the continent’s outer islands. Until a few years ago only about 250,000 people had ever set foot on the continent. It is an incredible voyage that few people have been fortunate enough to experience.
But in my mind, it’s very much worth the long, tiring trip. I have described Antarctica as “otherworldly” as it has scenery and vistas found nowhere else. There are barren islands, with black volcanic beaches littered with huge whale bones. There is a still-active volcano with a caldera about nine miles across. One side of the caldera has collapsed and so it has filled with sea water. Your ship can sail right in most of the time. And there you can, if you want, bathe in some hot springs on the black beach. Meanwhile, just yards away the Antarctic Ocean which fills the caldera is a very cold 32 degrees. Back at sea, there are huge, miles long (!) icebergs that your ship sails by, and millions of smaller icebergs and “bergy bits” that bounce off the sides of the ship as it plows through the ice-filled waters. The icebergs are mostly bright white, but there are also deep cobalt blue icebergs and ones with all manner of dark stripes in shades of black, brown and blue.
On many islands there are colonies of tens of thousands of varying species of penguins, who allow you to walk among them without any alarm whatever; they think you’re one of them since all their predators are either in the water or in the air. To them, if you walk, you’re a penguin. There are also seals by the hundreds, whales here and there, and albatrosses, petrels, terns, skuas and gulls. In the waters off the penguin colonies leopard seals, which survive by eating penguins, patrol back and forth, waiting for their next meal. The penguins know the leopard seals are there, but the penguins must eat too, so they gather by the dozens along the water’s edge, needing to get to the krill and small fish. They are afraid to enter the water, but finally the crush of penguins along the shore pushes a few in and then, quickly, they all go in, knowing that the leopard seal can catch but one. Meanwhile, while the adults are away, the petrels and skuas try to steal penguin chicks and strip away their flesh while they’re still trying to escape. Nature at its rawest.
You can take off your parka, because it does get “warm” in the bright Antarctic sun when you’ve been hiking for a while in deep snow, and sit in a snowbank at any of hundreds of locations along the coastline and look for miles and miles around you and see nothing but islands of black volcanic rock jutting from the dark indigo-blue water, and mountains all around covered with snow and ice. The views are simply stunning. The sea is filled with ice in all sizes and in uncounted fantastical shapes. As you survey the incredible panorama you notice that you hear nothing but the wind, the gentle surf and the ice it carries, softly grating against the usually rocky shore, and depending on where you are, you hear the humming calls of the penguins. There is no sound except that of nature. No airplanes overhead. No cars in the distance. No air conditioner compressors droning. No garbage trucks, no music from someone’s boom box, no dogs barking. There are no contrails in the sky, no roads, no buildings. It’s just you and your shipmates at the end of the world.
While moving among the various landing spots, the ship’s crew navigates by intense observation of the seas and shores, by radar and, I think by sonar too. They need to know exactly what is in the area and they can’t plot a course simply by following the sea charts, because we’re, as mentioned, at the end of the world. There are, in fact, maps of the area, but since we are so far from civilization, there has been no need to accurately survey the oceans. I visited the bridge during one of our sailings from one spot to the next and looked at the captain’s sea charts. I found out why I always saw one or two crewmen on the bridge looking out to our direction of travel with binoculars. It was extremely important that they were looking out at all times. All along our course, the sea charts warned, “Uncharted… uncharted… uncharted.”
And so I’ve also entered uncharted waters, in a way. I have now completed five rounds of chemotherapy, of a new and untested regimen which has been given to but six other patients before me (I have to presume the other six are doing reasonably well and that no one has died from the therapy because they haven’t stopped the clinical study). I’ve never completed more than four rounds and four months of chemotherapy in years past and that seemed like more than enough at the time. Four rounds were enough in 2002 to make my doc stop the drugs for fear that we were going to destroy my remaining stem cells. But this time we’re going on for a total of six rounds. I’m finding that things have changed a bit with my extended exposure to the various toxic substances I’ve been getting. The recovery from my Rounds Four and Five went pretty well once I got over the incredible fatigue that hits a few days after we start. I had most of the usual symptoms of shedding hair, fatigue, achy joints, hoarse voice, etc. But a couple of new symptoms turned up as well, this time. First, I have been starting to have small mouth ulcers, something I’ve been warned I might get since my first chemotherapy back in 2002, but I never had any. Well, things are catching up with me now. I had a cluster of small mouth ulcers, very much like small canker sores, for those of you who are aware of what those are, but they remained small and generally not too much of a problem, being more of an irritant than a seriously painful problem as so many other folks have experienced. They healed over in about ten days or so.
And another strange symptom has cropped up as well. I have been having an altered sense of smell and taste. More often than not I sense the odor of what is rather like stale cigarette smoke when I’m nowhere near cigarettes and in places where no cigarette has ever been lit, like in our home. And some flavors have become strangely unpalatable, like cola drinks, which now taste bitter and unpleasant. And it’s the same whether the drink is a diet or regular drink, so it’s not the sweetener as I supposed at first. Because of this we bought some raspberry flavored water for me to drink during my last round of drugs and I couldn’t drink it, it tasted so awful to me. When I mentioned this to my doctor he remarked, “Oh, yeah, that’s very common.” Now, I don’t remember ever hearing about this possibility but if I did I long ago forgot completely about it. Fortunately, most foods still taste normal so I can freely indulge in BBQ and Italian foods, among other high calorie dishes. I still haven’t lost any weight.
And another thing I’ve experienced is a small case of shingles, the sometimes very painful eruption of blisters on the body, generally on the trunk. Shingles is (are?) caused by the activation of the virus varicella zoster, which is the same virus that gave me chicken pox many decades ago. Well, when the chicken pox went away, the virus didn’t. It’s been hanging out in my body, like it is in yours if you’ve had chicken pox, just waiting for a chance to come back. Generally it comes back in folks when they’re stressed, very tired, elderly or, in my case, immunocompromised (AND I’m semi-elderly, stressed and very tired too!). Fortunately my case was very mild and short-lived, probably because I’m taking the anti-viral drug Zovirax on a daily basis.
Other things have happened as well. Remember Rosanne Rosannadanna? She was the Gilda Radner character who was always finding that things didn’t go just right. “It’s always something” she’d say. That’s what it was like trying to get my fifth round of drugs going. It was always something! First, when I saw my doc to get prepared for that round, my white count was lower than he wanted, so he put me back on Neupogen again. Then, just a couple of days later I was called and told that my magnesium levels were low and that I needed to take supplements. I wasn’t crazy about that idea as most magnesium products are also laxative in nature, but then I decided I could see certain advantages in that action, especially during the infusions, given the well-known “brick-making” side effects of the anti-nausea medications.
The day we were to start Round Five, more complications arose. My platelets, which had been low but adequate at about 80,000 (normal is about 150,000 to 300,000) the week before, were found to have dropped when we did the blood test to see if my white count had risen. The white count had indeed risen, but now we had other issues to deal with. Now, the guidelines of the Texas Cancer Center—Denton don’t permit chemotherapy if the patient’s platelets are below 100,000. M. D. Anderson is a bit more cavalier with their guidelines and permits the infusions down to a level of 75,000 platelets. My level had dropped to 74,000, just shy of the lower limit. Many phone calls between Denton and Houston ensued. Since my numbers had been trending downwards for a couple weeks, they decided to postpone the infusions and I had to come back in two days to see what the trend was. Well, two days later the count was still 74,000! More phone calls. Finally the folks at M. D. Anderson decided that though my count was low, it wasn’t still dropping and they gave the go-ahead for Round Five. And so we spent three days getting the usual infusions.
The recovery from that round wasn’t as bad as I’ve had in past rounds. First, the headaches have been much, much less severe and don’t last nearly as long since we made the change from the anti-nausea drug Zofran to Kytril. Secondly, the body aches over the last couple of rounds haven’t been nearly so bad and the joint pains actually seem to be resolving. And the days of extreme fatigue, which have routinely been knocking me flat for several days after the infusions are much fewer now. I really only had one really bad day after the last cycle.
But, my marrow is screaming for mercy! I can’t actually hear it screaming but I know it is. I get blood counts done weekly, and Monday, just three days ago, my counts were about as low as they’ve ever been. Remember that my white count was about 100,000 when we started this regimen in February, and that a normal white count is about 3,000 to about 10,000 or so. Well, as of Monday my white count was only 700, with just 100 of the bacteria fighters, the neutrophils. This is incredibly low, and I continue to wonder why I haven’t gotten any serious infections, abscesses, colds, etc. A large part of the answer is that Kathy watches me like a hawk, and is always ready with hand cleaner for me, she keeps me out of stores, opens the doors, etc., to protect me from too much exposure to environmental bacteria. But, just like anyone else, I have bacteria all over the outside and inside my body, yet my few bacteria fighters have done an amazing job of keeping me well, despite their depleted numbers. At any rate, we’re “calling up the reserves,” and so I’m on Neupogen again for five days to give my white count a boost.
If things continue to go well, I’ll be getting my sixth and final round of this chemotherapy in about two weeks and then all I have to do is recover from it and the extended effects of all six rounds of the drugs. I really am getting tired of always feeling tired, and of having to sit for hours in the infusion chairs, knowing what’s coming after, which is that I’m going to be sick again. And I’m tired of being confined to our home for a couple of weeks at a time and having to schedule our lives around my drug regimens. But, I am so fortunate to be able to participate in this remarkable drug study and find that it seems to be working so well. We really won’t know precisely how well it’s working, however, for many months, or even (hopefully) several years after we finish, because the measure of success will be to see if I can again get into remission and if I do, how long will the remission be. Will FCR/Avastin be better, the same or worse than the standard FCR regimen? Or just more expensive. That’s what we’ll be trying to find out.
I’ve told you about the bevacizumab, or Avastin, that I’m getting as part of my drug regimen at $30,000 a dose. And I’ve told you that it’s made by Genentech, the same folks that make the Rituxan I get at about $2000 or so per dose. Well, if you haven’t done so, you might take this opportunity to buy some stock in Genentech, because just in the few months I’ve been taking the Avastin, I’ve seen more and more indications for its use. First it was added for breast cancer, then cervical cancer, then other lung cancers and apparently almost any solid cancer, like bowel and pancreatic, etc. Now I have read that Senator Kennedy may be getting Avastin for his brain tumor. It’s even being used to treat non-malignant conditions like macular degeneration. Now, the thing about Avastin is that it doesn’t really cure anything, as far as I know. What it does is prevent the growth of the blood vessels that let tumors grow and spread. It contains the cancer, but doesn’t kill it. It turns a deadly disease into a chronic illness. So a patient is unlikely to get a six month course of Avastin and then go on their way, cured. More likely it will require repeated treatments for the rest of the patient’s life. And if that’s so, Genentech is going to sell a lot of their very expensive drug. And if the study I’m in, with Avastin being used for chronic lymphocytic leukemia, pans out as an improvement, there will be yet another huge market for the drug! Hey, the stock market is down these days. It’s an opportunity to get some stock cheap, probably (I say, without having looked it up to have any idea what it costs per share).
I received a most wonderful, kind and completely unexpected e-mail a couple of days ago from, as I told her, a “perfect stranger.” (She wrote back that she wasn’t perfect but had some folks fooled). This woman was a grade school friend of my younger sister some forty years ago and was trying to catch up with her using search engines when she stumbled into my blog. Part of what she wrote was: “Although you and I do not know each other personally, I felt compelled to email you…. Your blog is engrossing, touching, and, when one is just about overwhelmed at reading what you have endured, includes welcome levity. I admire your strength, attitude, sense of humor, and the fact that you allow yourself to feel & express your thoughts, fears, and emotions. I once read that we are all here to learn &/or teach in an attempt to perfect ourselves. (Kubler-Ross or Wayne Dyer I think) If that premise is true, you have had to learn way too much already. However, you are teaching many through your excellent example of how to deal with extreme adversity. And surely others will be helped by all that has been learned through your experience with CLL and Rx. It is my sincerest hope that your CLL will promptly slither back into remission and that your future will be filled with much more pleasant experiences.” I am very gratified to hear this from her and know that my experiences can be instructive and of interest to others, which is one reason I put it into the blogosphere (with much encouragement from our daughter). As I told her, also, I tend to be more open and honest in my writing many times than in person, where I will generally deny feeling crappy, tired, sick or whatever. The things I’m learning are the same things so many others before me have had to learn as well. If I can help other folks with CLL understand what they’re going to go through and what they can do in their own behalf I will be very satisfied with the blog. And I like her description of the CLL “slithering” back into remission.
Kathy and I are looking forward to being done with these treatments and being free to do the things we enjoy most, like travel. I already have a number of things in mind that I’d like to do, mostly in terms of trips to various places, but Kathy keeps warning about trying to do too much too soon. I will still be immunocompromised for many months and weak and with a reduced stamina for quite a while as well. I do need to pace myself, but it’ll be nice to be able to plan for the days when I can break out of my treatment confinement.
Speaking of planning, we’re going back to Antarctica again next February!
That’s all for now. But, of course, there’s always more, sooner or later.
Dave
dreck@prodigy.net
“Do a little more each day than you think you possibly can.”—Lowell Thomas
Monday, June 2, 2008
A Stark View
Dave’s Great Adventure, Book Three
Chapter 4, Verse 1
June 2, 2008
The infusion chairs you sit in, recliners really, are institutional and very functional and they’ll never be mistaken for your basic La-Z-Boy. They are clad in hospital-standard, light-green vinyl, the vinyl making it easier to clean up spills and stray body fluids. Each chair has a “wing” or small table at each arm, on which the nurses place supplies while starting IVs and initiating chemotherapy infusions. You can also place a drink on the “wing,” or perhaps your lunch if you’re there for a long infusion.
The reclining chairs have three positions; sitting, feet up and full recline. Most of the time you sit in full recline because the medications you’re given make you feel drowsy or sick, or perhaps both. At full recline your view of the world is stark. There is an off-white, rather light gray wall to your left. Overhead are standard gray-mottled acoustic ceiling tiles, about eighteen inches square. Some are stained with old water leaks, probably from the sprinkler system they hide. And there are fluorescent light fixtures, also about eighteen inches square, mixed in with the acoustic tiles and the occasional HVAC vent. The textured plastic covering the light fixtures contains a scattering of dead insects which have gone on to Bug Valhalla while searching for the source of the light.
And on your right there is a gleaming stainless steel pole, entering your field of vision from below and ending above you. The pole has a cross member at the top, with a hook at each end. From the hooks dangle several smallish clear plastic bags with labels on the far side which you’re unable to read. The bags have tubes which drop down and join other tubes which join yet other tubes leading out of your field of vision. You can’t see where they go, but the chill in your hand which you feel all the way up to your shoulder leads you to believe that whatever is in the bags is going into your arm. The fluids look benign.
The infusion room at the Texas Cancer Center-Denton is an elongated, squared off “C” shape. It’s about ten feet across the top, perhaps fifty feet along the west side and eighteen or so feet across the bottom. The open ends of the “C” are further squared off with walls about ten feet in length. The room is on the northwest corner of a generally northwesterly oriented rectangular building just off Interstate 35E. The wood paneled nurses’ station partially fills the jaws of the “C.” Distributed around the walls of the room are eleven identical hospital-green infusion chairs, all facing inwards toward the nursing station. I think that’s an unfortunate orientation because there are five windows along the long, westerly facing wall and another on the short northern wall. I’d rather be looking out the window at the crape myrtles, the sky and the birds than away from the outside view. In Denver all the chairs in the chemotherapy room faced away from the nursing station, towards the windows on the tenth floor of the building, giving great views of the Denver skyline. But here they do have eight televisions mounted to the ceiling for entertainment. Fortunately they are all muted, so that you don’t have to listen to the cacophony of eight televisions, each trying to out-volume the rest. There are headphones behind each chair which allow you to hear what is on the screen above you if you have any interest at all in the daytime television offerings.
I like to sit in the chair in the upper right corner of the “C,” and since we’re always early, we generally have our choice of chairs. It’s a bit out of the flow of traffic and gives the feeling of being a little quieter, but it’s hard to know if it really is. It seems like most of the folks who come here also have their favorite place, as we see the same folks in the same chairs at each visit, month after month. The folks who join you in the room come in all shapes and designs. Many are older, as you’d expect in a cancer clinic, but there are too many younger people as well. There was the guy in his early thirties, a quietly resolute look on his face, getting an infusion while his wife was looking through dozens of photocopied pages of material, trying to find the latest in treatments for his disease, I imagined. And another young guy, also early thirties, who always sits in the lower left corner of the room. He has a bald head, always covered with a ball cap. I asked him once, when the room was almost empty, what he had. “Cancer that has spread to my lungs,” he said vaguely. “What are you getting?” I followed up with. “Chemotherapy,” he responded. He apparently had no idea where the cancer had come from, and really didn’t care to know what he was getting, which I found to be simply amazing, since I want to know, with every infusion, what’s going in and how much of it. I’m probably a big pain in the ass to the nurses.
The room starts out empty, but generally by mid-morning every chair is occupied and often they’re using an overflow, single-bed room around the corner from “my” place. But by mid-afternoon, it’s almost empty again. We see the entire flow and ebb of the crowd while I’m there on my Day One, when the infusions take eight to nine hours. During this time I’m generally reclined most of the time, often dozing. Meanwhile Kathy is sitting in a thinly padded straight chair next to me, reading. I don’t know how her butt takes all those hours of just sitting. That’s more time than it takes to fly to Germany! But she’s been there with me, and for me, for every round of drugs I’ve ever done. Meanwhile lots of folks come in all by themselves. I feel badly for them. It seems like when you’re fighting a malignancy and getting drugs that are going to make you feel sick, someone should be there for you.
Some people dress up, like the lady in the striped dress and the pearls. Others, most people, just wear everyday stuff like jeans and T-shirts. But there are folks who look like they just came in from the fields, perhaps farming or something, and probably that’s exactly what they were doing. Some folks look homeless but have attendants with them. And there’s a doctor who comes in wearing his scrubs. I don’t know what he has.
Probably eighty percent of the patients around the room have infusion “ports” buried under the skin of their right upper chest, below their collar bone. It makes it easier for the nurses if the folks have ports because they don’t have to start IVs on them. Most folks pull down their collar or unbutton the top of their shirts to allow access to their ports, but there’s the great big guy who sits at the bottom of the “C” who wears T-shirts that don’t have enough slack in the collar to be drawn down to the level of the port, so he sits for hours with his shirt pulled all the way up to his neck, exposing his massive and not particularly attractive belly to the entire room. And he doesn’t really care.
I watch the goings-on in the room, but I don’t hear anything. I see the nurses approach the other patients and their mouths move, but there is no sound. The earbuds from the MP3 player are in place and it’s as if I’m watching a movie with a musical sound track of classic rock. As I look around the room, it seems surreal. I shouldn’t be here. Sick folks come here, not me. It’s just a movie; maybe a dream. They give me the pre-meds and I start to feel woozy and go into full recline. The stark view of the world returns. There are the multiple clear plastic bags, still hanging there on the cross-member of the gleaming steel pole. They look like they’re filled with water, but I know they’re not because the nurses wear gloves just to handle them, so toxic are they. They smile at me pleasantly and adjust the bags and the tubes. And they put the stuff into my veins! You know, I thought I had a pact with God. I’d go into the profession of curing disease and saving lives and He’d protect me from all this death and disease stuff, right? I shouldn’t be here. This place is for sick folks. And my arm gets cold from the clear fluids running into it. I pull up my green TNT blanket and close my eyes.
And so I went through Round Four of my chemotherapy, the fourth of six planned rounds of infusions, after the folks at M. D. Anderson looked me over and said my lab reports were right where they wanted them. This round went quite a bit better, at least initially, than the last one. In April I was sick and had a horrible headache by the start of the last day of the drugs, day three. It was the kind of headache that makes you hold you head absolutely still and makes you feel like you’re going to vomit. I had mentioned this to Alice, the Protocol Nurse Practitioner who evaluated me in Houston. “Zofran,” she responded, referring to the anti-nausea drug I’d been getting. “Huh?” I said. “Yeah, Zofran can cause that. Let’s try you on Kytril or Aloxi instead,” she said, rattling off the names of anti-nausea medications I’d never heard of and that probably hadn’t even been developed when I had to retire a few years ago. It turns out that I had been getting high doses and high concentrations of the Zofran. I didn’t know. I always ask about the doses of the chemo drugs they give me, but had never asked about the amount of Zofran, figuring I was getting the same doses I gave my patients years ago. So it turns out that some of my worst side effects were side effects of the drug I had been getting to minimize other side effects. Does it get any more ironic than that?
I got through the three days of drugs, the days again being long to start out with, at eight or so hours, but getting progressively shorter and I completed the infusions without the standard headache. That didn’t come for a couple more days, but wasn’t as bad as previously and didn’t last as many days. I thought I was doing pretty well, not feeling too awfully sick or anything, and got through the three days of infusions and into Thursday just fine, but then Friday sneaked in and hit me in the back of the head with an aluminum softball bat, you know, the ones that go “Ping!” when you hit something, and I didn’t really come to until Sunday Afternoon dropped by for a visit. I don’t recall ever being so tired after a round of drugs. I was laid low, lying around the house sleeping, sleeping on the lawn chairs on the patio, sleeping in front of the TV. I could rouse long enough to eat a bit, but that’s about all I could get myself to do. I was completely wiped out.
It’s now been a couple of weeks since the drugs went in and I’ve slowly come back to a more functional level but it’s been a slower recovery than before, I think. I just suspect that the cumulative effect of the drugs is taking a toll on my elderly body and that it will continue to get a little worse with each course. But I only have two more to go! I really am tired of feeling this way, though.
The other side effects are about the same. I have the body aches which get bad after each infusion and which slowly, very slowly, get a little better until I get the next dose of Avastin. Larry, our friend who is also getting Avastin still has aches and pains with his chemotherapy, too. I find that large doses of ibuprofen help a lot, but the problem with that is that I start getting bad stomach pains if I take too much, because the Avastin also causes a stomach irritation and pains. Larry ended up in the emergency room at M. D. Anderson during his first rounds of therapy because of severe abdominal pains which turned out to be essentially a very bad case of heartburn. He’s now on Nexium, I’m on Prilosec, both being acid-reducers. Also, we both get a bit hoarse and “squeaky” after each round. The, uh, “concreting” effects of the Kytril are just as bad as those of the Zofran, so that’s still an issue. And I’m still slowly shedding, probably because of the Cytoxan, but still nowhere near bald like I was a few years ago.
My blood counts have been amazing. Logically, you would expect them to be getting lower and lower with each round of drugs, like they did after my first series of infusions back in 2002. But the lowest my white cell counts have ever been during the current treatments was in the third week after my very first round of chemotherapy. They remain low, between about 1,200 and 1,700 or so, but stable. This week, my “nadir” week, my counts are actually slightly up from the numbers last week. I can’t explain it, but I guess it’s okay. My clotting cells, the platelets, are holding steady at a low but sufficient 60,000 to 80,000 and my red cells are low normal at 34%. And I finally heard about the results of my bone marrow biopsy, too. It showed less than 1% leukemic cells in the marrow, so again it seems like we’re doing something right. Hopefully after six rounds of drugs they won’t be able to find any of the bad guys in there, at least for a while.
Our friends Lou and Joan, from Golden, Colorado, continue to send almost daily greeting cards and e-cards, and have made me laugh even on some very bad days. Thanks again, guys. They have signed up to do a marathon with the TNT in October and have dedicated their efforts in my behalf and that of many folks like me. I think I’ll attach links to their donation web pages if any of you would like to help them out. Please take a look and see what you can do. They’ll thank you and so will I.
And I think that’s enough for now. I’ll try to get another update out within a week or so.
Bye now,
Dave
dreck@prodigy.net
“The worst thing that happens to you can be the best thing for you, if you don’t let the worst thing get the best of you.” --Unknown
Lou’s donation page: http://pages.teamintraining.org/rm/denver08/lhenefeld
Joan’s donation page: http://pages.teamintraining.org/rm/denver08/jhenefeld
Chapter 4, Verse 1
June 2, 2008
The infusion chairs you sit in, recliners really, are institutional and very functional and they’ll never be mistaken for your basic La-Z-Boy. They are clad in hospital-standard, light-green vinyl, the vinyl making it easier to clean up spills and stray body fluids. Each chair has a “wing” or small table at each arm, on which the nurses place supplies while starting IVs and initiating chemotherapy infusions. You can also place a drink on the “wing,” or perhaps your lunch if you’re there for a long infusion.
The reclining chairs have three positions; sitting, feet up and full recline. Most of the time you sit in full recline because the medications you’re given make you feel drowsy or sick, or perhaps both. At full recline your view of the world is stark. There is an off-white, rather light gray wall to your left. Overhead are standard gray-mottled acoustic ceiling tiles, about eighteen inches square. Some are stained with old water leaks, probably from the sprinkler system they hide. And there are fluorescent light fixtures, also about eighteen inches square, mixed in with the acoustic tiles and the occasional HVAC vent. The textured plastic covering the light fixtures contains a scattering of dead insects which have gone on to Bug Valhalla while searching for the source of the light.
And on your right there is a gleaming stainless steel pole, entering your field of vision from below and ending above you. The pole has a cross member at the top, with a hook at each end. From the hooks dangle several smallish clear plastic bags with labels on the far side which you’re unable to read. The bags have tubes which drop down and join other tubes which join yet other tubes leading out of your field of vision. You can’t see where they go, but the chill in your hand which you feel all the way up to your shoulder leads you to believe that whatever is in the bags is going into your arm. The fluids look benign.
The infusion room at the Texas Cancer Center-Denton is an elongated, squared off “C” shape. It’s about ten feet across the top, perhaps fifty feet along the west side and eighteen or so feet across the bottom. The open ends of the “C” are further squared off with walls about ten feet in length. The room is on the northwest corner of a generally northwesterly oriented rectangular building just off Interstate 35E. The wood paneled nurses’ station partially fills the jaws of the “C.” Distributed around the walls of the room are eleven identical hospital-green infusion chairs, all facing inwards toward the nursing station. I think that’s an unfortunate orientation because there are five windows along the long, westerly facing wall and another on the short northern wall. I’d rather be looking out the window at the crape myrtles, the sky and the birds than away from the outside view. In Denver all the chairs in the chemotherapy room faced away from the nursing station, towards the windows on the tenth floor of the building, giving great views of the Denver skyline. But here they do have eight televisions mounted to the ceiling for entertainment. Fortunately they are all muted, so that you don’t have to listen to the cacophony of eight televisions, each trying to out-volume the rest. There are headphones behind each chair which allow you to hear what is on the screen above you if you have any interest at all in the daytime television offerings.
I like to sit in the chair in the upper right corner of the “C,” and since we’re always early, we generally have our choice of chairs. It’s a bit out of the flow of traffic and gives the feeling of being a little quieter, but it’s hard to know if it really is. It seems like most of the folks who come here also have their favorite place, as we see the same folks in the same chairs at each visit, month after month. The folks who join you in the room come in all shapes and designs. Many are older, as you’d expect in a cancer clinic, but there are too many younger people as well. There was the guy in his early thirties, a quietly resolute look on his face, getting an infusion while his wife was looking through dozens of photocopied pages of material, trying to find the latest in treatments for his disease, I imagined. And another young guy, also early thirties, who always sits in the lower left corner of the room. He has a bald head, always covered with a ball cap. I asked him once, when the room was almost empty, what he had. “Cancer that has spread to my lungs,” he said vaguely. “What are you getting?” I followed up with. “Chemotherapy,” he responded. He apparently had no idea where the cancer had come from, and really didn’t care to know what he was getting, which I found to be simply amazing, since I want to know, with every infusion, what’s going in and how much of it. I’m probably a big pain in the ass to the nurses.
The room starts out empty, but generally by mid-morning every chair is occupied and often they’re using an overflow, single-bed room around the corner from “my” place. But by mid-afternoon, it’s almost empty again. We see the entire flow and ebb of the crowd while I’m there on my Day One, when the infusions take eight to nine hours. During this time I’m generally reclined most of the time, often dozing. Meanwhile Kathy is sitting in a thinly padded straight chair next to me, reading. I don’t know how her butt takes all those hours of just sitting. That’s more time than it takes to fly to Germany! But she’s been there with me, and for me, for every round of drugs I’ve ever done. Meanwhile lots of folks come in all by themselves. I feel badly for them. It seems like when you’re fighting a malignancy and getting drugs that are going to make you feel sick, someone should be there for you.
Some people dress up, like the lady in the striped dress and the pearls. Others, most people, just wear everyday stuff like jeans and T-shirts. But there are folks who look like they just came in from the fields, perhaps farming or something, and probably that’s exactly what they were doing. Some folks look homeless but have attendants with them. And there’s a doctor who comes in wearing his scrubs. I don’t know what he has.
Probably eighty percent of the patients around the room have infusion “ports” buried under the skin of their right upper chest, below their collar bone. It makes it easier for the nurses if the folks have ports because they don’t have to start IVs on them. Most folks pull down their collar or unbutton the top of their shirts to allow access to their ports, but there’s the great big guy who sits at the bottom of the “C” who wears T-shirts that don’t have enough slack in the collar to be drawn down to the level of the port, so he sits for hours with his shirt pulled all the way up to his neck, exposing his massive and not particularly attractive belly to the entire room. And he doesn’t really care.
I watch the goings-on in the room, but I don’t hear anything. I see the nurses approach the other patients and their mouths move, but there is no sound. The earbuds from the MP3 player are in place and it’s as if I’m watching a movie with a musical sound track of classic rock. As I look around the room, it seems surreal. I shouldn’t be here. Sick folks come here, not me. It’s just a movie; maybe a dream. They give me the pre-meds and I start to feel woozy and go into full recline. The stark view of the world returns. There are the multiple clear plastic bags, still hanging there on the cross-member of the gleaming steel pole. They look like they’re filled with water, but I know they’re not because the nurses wear gloves just to handle them, so toxic are they. They smile at me pleasantly and adjust the bags and the tubes. And they put the stuff into my veins! You know, I thought I had a pact with God. I’d go into the profession of curing disease and saving lives and He’d protect me from all this death and disease stuff, right? I shouldn’t be here. This place is for sick folks. And my arm gets cold from the clear fluids running into it. I pull up my green TNT blanket and close my eyes.
And so I went through Round Four of my chemotherapy, the fourth of six planned rounds of infusions, after the folks at M. D. Anderson looked me over and said my lab reports were right where they wanted them. This round went quite a bit better, at least initially, than the last one. In April I was sick and had a horrible headache by the start of the last day of the drugs, day three. It was the kind of headache that makes you hold you head absolutely still and makes you feel like you’re going to vomit. I had mentioned this to Alice, the Protocol Nurse Practitioner who evaluated me in Houston. “Zofran,” she responded, referring to the anti-nausea drug I’d been getting. “Huh?” I said. “Yeah, Zofran can cause that. Let’s try you on Kytril or Aloxi instead,” she said, rattling off the names of anti-nausea medications I’d never heard of and that probably hadn’t even been developed when I had to retire a few years ago. It turns out that I had been getting high doses and high concentrations of the Zofran. I didn’t know. I always ask about the doses of the chemo drugs they give me, but had never asked about the amount of Zofran, figuring I was getting the same doses I gave my patients years ago. So it turns out that some of my worst side effects were side effects of the drug I had been getting to minimize other side effects. Does it get any more ironic than that?
I got through the three days of drugs, the days again being long to start out with, at eight or so hours, but getting progressively shorter and I completed the infusions without the standard headache. That didn’t come for a couple more days, but wasn’t as bad as previously and didn’t last as many days. I thought I was doing pretty well, not feeling too awfully sick or anything, and got through the three days of infusions and into Thursday just fine, but then Friday sneaked in and hit me in the back of the head with an aluminum softball bat, you know, the ones that go “Ping!” when you hit something, and I didn’t really come to until Sunday Afternoon dropped by for a visit. I don’t recall ever being so tired after a round of drugs. I was laid low, lying around the house sleeping, sleeping on the lawn chairs on the patio, sleeping in front of the TV. I could rouse long enough to eat a bit, but that’s about all I could get myself to do. I was completely wiped out.
It’s now been a couple of weeks since the drugs went in and I’ve slowly come back to a more functional level but it’s been a slower recovery than before, I think. I just suspect that the cumulative effect of the drugs is taking a toll on my elderly body and that it will continue to get a little worse with each course. But I only have two more to go! I really am tired of feeling this way, though.
The other side effects are about the same. I have the body aches which get bad after each infusion and which slowly, very slowly, get a little better until I get the next dose of Avastin. Larry, our friend who is also getting Avastin still has aches and pains with his chemotherapy, too. I find that large doses of ibuprofen help a lot, but the problem with that is that I start getting bad stomach pains if I take too much, because the Avastin also causes a stomach irritation and pains. Larry ended up in the emergency room at M. D. Anderson during his first rounds of therapy because of severe abdominal pains which turned out to be essentially a very bad case of heartburn. He’s now on Nexium, I’m on Prilosec, both being acid-reducers. Also, we both get a bit hoarse and “squeaky” after each round. The, uh, “concreting” effects of the Kytril are just as bad as those of the Zofran, so that’s still an issue. And I’m still slowly shedding, probably because of the Cytoxan, but still nowhere near bald like I was a few years ago.
My blood counts have been amazing. Logically, you would expect them to be getting lower and lower with each round of drugs, like they did after my first series of infusions back in 2002. But the lowest my white cell counts have ever been during the current treatments was in the third week after my very first round of chemotherapy. They remain low, between about 1,200 and 1,700 or so, but stable. This week, my “nadir” week, my counts are actually slightly up from the numbers last week. I can’t explain it, but I guess it’s okay. My clotting cells, the platelets, are holding steady at a low but sufficient 60,000 to 80,000 and my red cells are low normal at 34%. And I finally heard about the results of my bone marrow biopsy, too. It showed less than 1% leukemic cells in the marrow, so again it seems like we’re doing something right. Hopefully after six rounds of drugs they won’t be able to find any of the bad guys in there, at least for a while.
Our friends Lou and Joan, from Golden, Colorado, continue to send almost daily greeting cards and e-cards, and have made me laugh even on some very bad days. Thanks again, guys. They have signed up to do a marathon with the TNT in October and have dedicated their efforts in my behalf and that of many folks like me. I think I’ll attach links to their donation web pages if any of you would like to help them out. Please take a look and see what you can do. They’ll thank you and so will I.
And I think that’s enough for now. I’ll try to get another update out within a week or so.
Bye now,
Dave
dreck@prodigy.net
“The worst thing that happens to you can be the best thing for you, if you don’t let the worst thing get the best of you.” --Unknown
Lou’s donation page: http://pages.teamintraining.org/rm/denver08/lhenefeld
Joan’s donation page: http://pages.teamintraining.org/rm/denver08/jhenefeld
Sunday, May 18, 2008
Very Lucky
Dave’s Great Adventure, Book Three
Chapter 3, Verse 2
May 18, 2008
Very Lucky
I met a gentleman in Houston last week, by a chance encounter, and it made me wonder why things turn out the way they do. He and I are about the same age, I’d guess, and we’ve seen a lot in our six decades of life, but things have turned out very differently for us. What is it that determines the paths our lives take?
He and I were both born some sixty years ago, or so, and were held by mothers who cried tears of joy and kissed us and loved us. Hopefully he had family around to celebrate his birth, as I did. But sixty years later, in the south side of Houston, he appeared totally unloved and abandoned.
I first noticed him as Kathy and I sat in a Taco Cabana restaurant across the street from our hotel. We were just having a light meal when he came in. I didn’t pay a lot of attention, but I noticed that a wheelchair-bound man was moving around near the service areas and at some of the tables. I thought at first perhaps he was a handicapped employee, as he seemed to be checking out each of the areas. It was only when I saw him reach into the paper napkin dispenser, remove a three-inch stack and stuff it into the space between his legs and the side of the borrowed wheelchair (supplies for later?) that I realized he was probably homeless. He moved about from empty tables to the condiments area to the rack with the plastic utensils and elsewhere. Shortly thereafter he came over to the section where we were. As he passed us I saw that he had taken someone’s used paper cup and filled it with pico de gallo from the condiments bar and was eating it for dinner with a plastic spoon.
He headed towards the door. On the back of the wheelchair it said “Peds, Guest Services.” It must have come from one of the local children's hospitals, but we were at least a mile from the closest of the facilities with many busy streets between them and the Taco Cabana. I looked at Kathy and said, “Oh my gosh, did you see that? The poor guy’s eating a cup of pico!”
We were born at about the same time, but sixty years later I am extremely fortunate to be able to say that I have more than I need of just about everything. I have a loving wife and supportive family all around me, a circle of amazingly wonderful friends, and more material goods than I need or deserve. The only thing I could possibly ask for would be for my disease to be taken from me, but we’re working on that. Yet the gentleman had none of these things, as he sat in the Taco Cabana, crippled, destitute and homeless. Why the difference? Is it simply an accident of birth place or circumstances? Different work ethics or work opportunities? Or just bad luck on his part and good luck on my part? I can’t know how he came to be sitting in that borrowed wheelchair eating pilfered pico de gallo on that Tuesday evening in May.
He saw me as I approached him and asked me, “Would you open the door?” But I asked him, “Would you like something to eat?” He was initially embarrassed, as he seemed to think I worked there and had caught him stealing food and was asking for him to order something. He looked up with weary eyes and said, “No, I don’t have no money.” “No,” I said, “are you hungry, I’ll buy you something to eat.” He allowed that he’d like a couple of tacos. So I went to order some food for him, and when the cashier asked, “For here or to go?” I told her it was for the homeless gentleman by the door. She looked over, was sympathetic, and added more food to my order at no extra cost. I took him his drink and food and he went to a table and ate. I returned to Kathy and wondered why I was so lucky and he was so unfortunate.
The trip to Houston this week went well. We arrived there safely, but tired. We didn’t get to the NASA museum as it would have been a full day visit and I wasn’t feeling up to it, but the nearby Museum of FineArts Houston (that’s the way it’s written) was having a special exhibit of several hundred recently excavated artifacts from Pompeii and Herculaneum. Many of you know that I love Roman history and have been to Pompeii a couple of times, but I’m always interested in seeing more, so we decided to visit the museum, selecting that over the held-over “Lucy,” early-man, exhibit at the Museum of Natural History just up the street. We’ll probably see that exhibit next time if it’s still in town. The Pompeii exhibit was just excellent and I recommend it to any of you who might happen to be passing through Houston anytime soon.
The visit with my docs and nurses went extremely well. They are all very pleased with my progress. Dr. Keating said, “You’re making me look good.” All my labs are normal, including my white count, which was up to 3,300. That’s in the low end of the normal range of white cells, which amazes me, because in 2002 when I was first doing the FCR protocol my white counts just got progressively lower and lower until we stopped when they got down to 1,100. The even better news is that of the 3,300 white cells, most of them are “good” cells, the neutrophils and monocytes, with still only a small number of potentially malignant lymphocytes. Dr. Keating cleared me to start the second half of the protocol, which we’ll begin tomorrow morning.
Oh, yeah, after I had the visit with all my docs and nurses, I had to have the bone marrow biopsy. Once again, it was done extremely well and really didn’t hurt very much at all. The worst part of the procedure, for me, was tensing up and waiting for the sharp jolt of pain which I had experienced in the past, but the jolt never came. And I knew, though I couldn’t see it, that there was a huge needle being prodded deep into my hip bone, and that visual is worrisome because you expect it to hurt, but overall, it didn’t hurt any more than falling down on pavement and skinning your knee. And these procedures are done not by doctors, and not by nurses, but by technicians who are trained in the art of bone marrow biopsy. They are trained exceedingly well. We won’t have the results of the bone marrow biopsy until later this week but with all my labs doing well, I fully expect that the biopsy results will also be relatively normal.
Many of you know that I bought a little sports car last year, after not having one for about fifteen years. I had a sports sedan when we moved to Colorado, but with the snow and gravel on the roads much of the year, I didn’t drive it a lot and finally I traded it in for a 4-Runner, which is much more utilitarian in the wilds of Colorado. So I’ve been without a “fun” car for about fifteen years but didn’t really miss it until recently, because when I was recovering from the chemo-brain, I couldn’t concentrate on traffic enough to drive like one would in a sports car. But late last year I was feeling better and so I bought one. I loved that little car, but it had a standard transmission, as God intended sports cars to have. Problem was, Kathy couldn’t drive it. I found, on our little overnight trip to Nacogdoches last month, that I needed help in driving that I couldn’t get if the car had a standard transmission. If we were to travel much in the sports car, Kathy would have to be able to drive it too. So, this month I traded my little sports car for one with an automatic. At least that was my excuse. The fact that the new one has more creature comforts, a sun roof, all-wheel drive, small back seats (for jackets and maps, and such) plus an extra hundred horsepower also may have figured into my decision. It does go! Fast! Kathy drove it for a while on the way to Houston and I saw the speedometer in the 80s much of the time and into the 90s a couple of times! She hasn’t driven that fast since we got back from Germany years ago.
I’m reading Ayn Rand’s "Atlas Shrugged" these days. That’s amazing on several levels. One, I don’t normally read fiction. Secondly, I don’t know how I got through high school and college with out having been assigned to read it. And mostly, it’s rather amazing that I’m able to comprehend this very long, dense "War and Peace"-length book these days. I borrowed it from our friend Bonnie a couple of months ago and have slowly been working my way through it. Has anyone else out there read this book? I still see it for sale in the local book stores, sixty years or more after it was written. Very interesting premise. I’m just getting to what it’s all about and see a lot of parallels between what Ayn Rand was describing and modern work culture in America.
I think that’s plenty for now. I’m going to close this update and get to bed. I start Round Four in the morning and the first day is always a very long day, usually about eight hours. More later.
Dave
dreck@prodigy.net
"Everything I have in life is more than that which I don't have.” --Unknown
(sent to me by our friend Tom Redd in Colorado)
Chapter 3, Verse 2
May 18, 2008
Very Lucky
I met a gentleman in Houston last week, by a chance encounter, and it made me wonder why things turn out the way they do. He and I are about the same age, I’d guess, and we’ve seen a lot in our six decades of life, but things have turned out very differently for us. What is it that determines the paths our lives take?
He and I were both born some sixty years ago, or so, and were held by mothers who cried tears of joy and kissed us and loved us. Hopefully he had family around to celebrate his birth, as I did. But sixty years later, in the south side of Houston, he appeared totally unloved and abandoned.
I first noticed him as Kathy and I sat in a Taco Cabana restaurant across the street from our hotel. We were just having a light meal when he came in. I didn’t pay a lot of attention, but I noticed that a wheelchair-bound man was moving around near the service areas and at some of the tables. I thought at first perhaps he was a handicapped employee, as he seemed to be checking out each of the areas. It was only when I saw him reach into the paper napkin dispenser, remove a three-inch stack and stuff it into the space between his legs and the side of the borrowed wheelchair (supplies for later?) that I realized he was probably homeless. He moved about from empty tables to the condiments area to the rack with the plastic utensils and elsewhere. Shortly thereafter he came over to the section where we were. As he passed us I saw that he had taken someone’s used paper cup and filled it with pico de gallo from the condiments bar and was eating it for dinner with a plastic spoon.
He headed towards the door. On the back of the wheelchair it said “Peds, Guest Services.” It must have come from one of the local children's hospitals, but we were at least a mile from the closest of the facilities with many busy streets between them and the Taco Cabana. I looked at Kathy and said, “Oh my gosh, did you see that? The poor guy’s eating a cup of pico!”
We were born at about the same time, but sixty years later I am extremely fortunate to be able to say that I have more than I need of just about everything. I have a loving wife and supportive family all around me, a circle of amazingly wonderful friends, and more material goods than I need or deserve. The only thing I could possibly ask for would be for my disease to be taken from me, but we’re working on that. Yet the gentleman had none of these things, as he sat in the Taco Cabana, crippled, destitute and homeless. Why the difference? Is it simply an accident of birth place or circumstances? Different work ethics or work opportunities? Or just bad luck on his part and good luck on my part? I can’t know how he came to be sitting in that borrowed wheelchair eating pilfered pico de gallo on that Tuesday evening in May.
He saw me as I approached him and asked me, “Would you open the door?” But I asked him, “Would you like something to eat?” He was initially embarrassed, as he seemed to think I worked there and had caught him stealing food and was asking for him to order something. He looked up with weary eyes and said, “No, I don’t have no money.” “No,” I said, “are you hungry, I’ll buy you something to eat.” He allowed that he’d like a couple of tacos. So I went to order some food for him, and when the cashier asked, “For here or to go?” I told her it was for the homeless gentleman by the door. She looked over, was sympathetic, and added more food to my order at no extra cost. I took him his drink and food and he went to a table and ate. I returned to Kathy and wondered why I was so lucky and he was so unfortunate.
The trip to Houston this week went well. We arrived there safely, but tired. We didn’t get to the NASA museum as it would have been a full day visit and I wasn’t feeling up to it, but the nearby Museum of FineArts Houston (that’s the way it’s written) was having a special exhibit of several hundred recently excavated artifacts from Pompeii and Herculaneum. Many of you know that I love Roman history and have been to Pompeii a couple of times, but I’m always interested in seeing more, so we decided to visit the museum, selecting that over the held-over “Lucy,” early-man, exhibit at the Museum of Natural History just up the street. We’ll probably see that exhibit next time if it’s still in town. The Pompeii exhibit was just excellent and I recommend it to any of you who might happen to be passing through Houston anytime soon.
The visit with my docs and nurses went extremely well. They are all very pleased with my progress. Dr. Keating said, “You’re making me look good.” All my labs are normal, including my white count, which was up to 3,300. That’s in the low end of the normal range of white cells, which amazes me, because in 2002 when I was first doing the FCR protocol my white counts just got progressively lower and lower until we stopped when they got down to 1,100. The even better news is that of the 3,300 white cells, most of them are “good” cells, the neutrophils and monocytes, with still only a small number of potentially malignant lymphocytes. Dr. Keating cleared me to start the second half of the protocol, which we’ll begin tomorrow morning.
Oh, yeah, after I had the visit with all my docs and nurses, I had to have the bone marrow biopsy. Once again, it was done extremely well and really didn’t hurt very much at all. The worst part of the procedure, for me, was tensing up and waiting for the sharp jolt of pain which I had experienced in the past, but the jolt never came. And I knew, though I couldn’t see it, that there was a huge needle being prodded deep into my hip bone, and that visual is worrisome because you expect it to hurt, but overall, it didn’t hurt any more than falling down on pavement and skinning your knee. And these procedures are done not by doctors, and not by nurses, but by technicians who are trained in the art of bone marrow biopsy. They are trained exceedingly well. We won’t have the results of the bone marrow biopsy until later this week but with all my labs doing well, I fully expect that the biopsy results will also be relatively normal.
Many of you know that I bought a little sports car last year, after not having one for about fifteen years. I had a sports sedan when we moved to Colorado, but with the snow and gravel on the roads much of the year, I didn’t drive it a lot and finally I traded it in for a 4-Runner, which is much more utilitarian in the wilds of Colorado. So I’ve been without a “fun” car for about fifteen years but didn’t really miss it until recently, because when I was recovering from the chemo-brain, I couldn’t concentrate on traffic enough to drive like one would in a sports car. But late last year I was feeling better and so I bought one. I loved that little car, but it had a standard transmission, as God intended sports cars to have. Problem was, Kathy couldn’t drive it. I found, on our little overnight trip to Nacogdoches last month, that I needed help in driving that I couldn’t get if the car had a standard transmission. If we were to travel much in the sports car, Kathy would have to be able to drive it too. So, this month I traded my little sports car for one with an automatic. At least that was my excuse. The fact that the new one has more creature comforts, a sun roof, all-wheel drive, small back seats (for jackets and maps, and such) plus an extra hundred horsepower also may have figured into my decision. It does go! Fast! Kathy drove it for a while on the way to Houston and I saw the speedometer in the 80s much of the time and into the 90s a couple of times! She hasn’t driven that fast since we got back from Germany years ago.
I’m reading Ayn Rand’s "Atlas Shrugged" these days. That’s amazing on several levels. One, I don’t normally read fiction. Secondly, I don’t know how I got through high school and college with out having been assigned to read it. And mostly, it’s rather amazing that I’m able to comprehend this very long, dense "War and Peace"-length book these days. I borrowed it from our friend Bonnie a couple of months ago and have slowly been working my way through it. Has anyone else out there read this book? I still see it for sale in the local book stores, sixty years or more after it was written. Very interesting premise. I’m just getting to what it’s all about and see a lot of parallels between what Ayn Rand was describing and modern work culture in America.
I think that’s plenty for now. I’m going to close this update and get to bed. I start Round Four in the morning and the first day is always a very long day, usually about eight hours. More later.
Dave
dreck@prodigy.net
"Everything I have in life is more than that which I don't have.” --Unknown
(sent to me by our friend Tom Redd in Colorado)
Sunday, May 11, 2008
Halfway Done
Dave’s Great Adventure, Book Three
Chapter 3, Verse 1
May 11, 2008
Halfway Done.
I’ve been extremely delinquent in getting my updates out. I’ve promised numerous folks over the last couple of weeks that I was going to get a letter out but I just haven’t gotten it done. Laura, of TNT, told me that I didn’t have to write a novel each time I sent out an update, that a short memo would do. Anna, who is traveling back and forth to Houston with husband Larry, for his experimental Avastin treatments, is able to send out complete updates in about six sentences. I should be so economical with my words! But in fact I seem to think that I have to write The Great American Novel with each letter because I have so many thoughts running around in my head. However, I haven’t been able to make myself sit down and organize them of late. I guess the drugs are catching up with me. I’m starting to feel more fatigued on a regular basis, am having more trouble keeping my thoughts together, and am beginning to require a period of rest just about every afternoon, like I did for months before I retired and then for a year or more afterwards. I finally came out of my mental fog of “chemo-brain” in the last year or so, but I think it’s coming back.
I really didn’t expect this because I haven’t had the “fuzzies” this time around, a condition long-time readers will remember me describing after each prior round of drugs. During the mental “fuzzies” I couldn’t read the paper with comprehension, remember much of anything and mostly I would just lie around the house for several days until the symptoms slowly went away. I expected to get the fuzzies again, since I’m getting basically the same FCR (Fludara, Cytoxan, Rituxan) regimen I got several years ago, and then, on top of that cocktail, I’m getting the Avastin too. But since I didn’t get the fuzzies I expected that I’d avoid the chemo-brain this time around too. I think I was fooling myself. I have to wonder if the lack of large doses of steroids with each day’s infusions has something to do with the absence of the fuzzies with this new regimen.
Anyway, my lack of communication didn’t mean that there were any serious problems; just that I was tired and/or lazy, and a bit busier than I should have been at times. I haven’t really been ill, haven’t gotten a cold or bronchitis or anything, and even my sinus infection has cleared up. I’ll try to do better with updates in the coming weeks.
The last rounds of drugs went pretty well. The first day was very long again, lasting eight hours because of the four hours it takes just to give the Rituxan, which is then followed by the Fludara and Cytoxan. The next two days went much faster though. But I was getting sick by the end of the second day and felt really pretty bad before we even started the third day’s infusions. I was extremely tired and had a splitting headache and queasy stomach, feeling much like I had a bad migraine. I treated the headache like I have in the past with reasonably good results. The headaches usually decline in severity over about five to seven days after the infusions and the fatigue subsides along with the headaches. I still have all the joint aches and am still slowly shedding my hair, but the fatigue is just a bit worse than before.
My blood counts through the last cycle haven’t been too bad. My nadir, or low point, white blood cell counts weren’t as low as they have been in the past, and my platelets and red cell counts have been holding steady. I haven’t required any Neupogen this cycle, which really surprises me, because I would have expected that my counts would continue to decline with each round of chemotherapy. But in fact my white counts last Monday were the highest they’ve been since the first week of the first round of this new regimen, back in February. Not all that high, really, at 2,500, but my counts haven’t been above 2,000 without the help of Neupogen since we started. And even though my counts are up a bit, the lymphocyte counts remain low, at 200. So the stuff is working, but for reasons I can’t explain, it’s sparing my neutrophils and monocytes, the white cells that take care of bacterial infections.
Since it’s been a lot warmer and the flu season is over, we’ve been getting out a bit more. I haven’t been quite so paranoid about being out among crowds or in restaurants. We’ve made it to church (sitting across the sanctuary from where the families with the small kids usually sit) and have been able to eat out and see the family on a fairly regular basis. We even went to a Roger Waters concert (he being a former member of the band Pink Floyd; I’m sure my mom will now immediately recognize who he is!) in Dallas. The music was great but it was ear-splittingly loud where we were sitting. I was wishing I had brought the ear plugs I had intended to bring but forgot (because of my chemo-brain?). One benefit of the concert for those of us involved with chemotherapy was that there was a lot of medicinal mary jane in the air around us. Wow, I haven’t had any nausea since the concert! But I’m always hungry….
The next couple of weeks will be busy for us. We leave on Tuesday to go to back to Houston again, this time for my “mid-protocol” examination and evaluation, with labs and a bone marrow biopsy. If things are going as expected and they don’t think my side effects are too worrisome, we’ll return to Denton next Thursday afternoon and start Round Four the following Monday. I had the option of doing the chemotherapy in Houston, but decided I didn’t want to have to travel the three hundred miles back to Denton feeling as badly as I did after my last course of drugs. Now that I have more confidence in the local nurses I’d just as soon get the drugs here in Denton and be able to go straight home to rest and recover. We’re going to Houston a day earlier than we have to because we’re going to try to see the nearby NASA museum while we’re there. Whether we actually do or not will depend on how tired I am after we get there. My experience with our little overnight trip last month makes me suspect that I’m going to be more tired than I would like. We’ll see.
And that’s about all for this time. I’ll try to get another short update out after we return from Houston at the end of the week but it may depend on how tired I am and what all we have to do to get ready for the start of the fourth (of the six planned) round of drugs. Wish us luck on our trip to Houston this week.
Dave
dreck@prodigy.net
A BABY ASKED:
A baby asked God, “They tell me you are sending me to earth tomorrow, but how am I going to live there, being so small and helpless?
“Your angel will be waiting for you and will take care of you.”
The child further inquired, “But tell me, here in Heaven I don’t have to do anything but sing and smile to be happy.”
God said, “Your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.”
Again the child asked, “And how am I going to understand when people talk to me and I don’t understand the language?”
God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”
“And what am I going to do when I want to talk to you?”
God said, “Your angel will place your hands together and teach you how to pray.”
“Who will protect me?”
God said, “Your angel will defend you even if it means risking its life.”
“But I will be sad because I will not see you anymore.”
God said, “Your angel will always talk to you about Me and will teach you the way back to Me, even though I will always be next to you.”
At this moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, “God, if I am to leave now, please tell me my angel’s name.”
“You can simply call her, ‘Mom’.”
Chapter 3, Verse 1
May 11, 2008
Halfway Done.
I’ve been extremely delinquent in getting my updates out. I’ve promised numerous folks over the last couple of weeks that I was going to get a letter out but I just haven’t gotten it done. Laura, of TNT, told me that I didn’t have to write a novel each time I sent out an update, that a short memo would do. Anna, who is traveling back and forth to Houston with husband Larry, for his experimental Avastin treatments, is able to send out complete updates in about six sentences. I should be so economical with my words! But in fact I seem to think that I have to write The Great American Novel with each letter because I have so many thoughts running around in my head. However, I haven’t been able to make myself sit down and organize them of late. I guess the drugs are catching up with me. I’m starting to feel more fatigued on a regular basis, am having more trouble keeping my thoughts together, and am beginning to require a period of rest just about every afternoon, like I did for months before I retired and then for a year or more afterwards. I finally came out of my mental fog of “chemo-brain” in the last year or so, but I think it’s coming back.
I really didn’t expect this because I haven’t had the “fuzzies” this time around, a condition long-time readers will remember me describing after each prior round of drugs. During the mental “fuzzies” I couldn’t read the paper with comprehension, remember much of anything and mostly I would just lie around the house for several days until the symptoms slowly went away. I expected to get the fuzzies again, since I’m getting basically the same FCR (Fludara, Cytoxan, Rituxan) regimen I got several years ago, and then, on top of that cocktail, I’m getting the Avastin too. But since I didn’t get the fuzzies I expected that I’d avoid the chemo-brain this time around too. I think I was fooling myself. I have to wonder if the lack of large doses of steroids with each day’s infusions has something to do with the absence of the fuzzies with this new regimen.
Anyway, my lack of communication didn’t mean that there were any serious problems; just that I was tired and/or lazy, and a bit busier than I should have been at times. I haven’t really been ill, haven’t gotten a cold or bronchitis or anything, and even my sinus infection has cleared up. I’ll try to do better with updates in the coming weeks.
The last rounds of drugs went pretty well. The first day was very long again, lasting eight hours because of the four hours it takes just to give the Rituxan, which is then followed by the Fludara and Cytoxan. The next two days went much faster though. But I was getting sick by the end of the second day and felt really pretty bad before we even started the third day’s infusions. I was extremely tired and had a splitting headache and queasy stomach, feeling much like I had a bad migraine. I treated the headache like I have in the past with reasonably good results. The headaches usually decline in severity over about five to seven days after the infusions and the fatigue subsides along with the headaches. I still have all the joint aches and am still slowly shedding my hair, but the fatigue is just a bit worse than before.
My blood counts through the last cycle haven’t been too bad. My nadir, or low point, white blood cell counts weren’t as low as they have been in the past, and my platelets and red cell counts have been holding steady. I haven’t required any Neupogen this cycle, which really surprises me, because I would have expected that my counts would continue to decline with each round of chemotherapy. But in fact my white counts last Monday were the highest they’ve been since the first week of the first round of this new regimen, back in February. Not all that high, really, at 2,500, but my counts haven’t been above 2,000 without the help of Neupogen since we started. And even though my counts are up a bit, the lymphocyte counts remain low, at 200. So the stuff is working, but for reasons I can’t explain, it’s sparing my neutrophils and monocytes, the white cells that take care of bacterial infections.
Since it’s been a lot warmer and the flu season is over, we’ve been getting out a bit more. I haven’t been quite so paranoid about being out among crowds or in restaurants. We’ve made it to church (sitting across the sanctuary from where the families with the small kids usually sit) and have been able to eat out and see the family on a fairly regular basis. We even went to a Roger Waters concert (he being a former member of the band Pink Floyd; I’m sure my mom will now immediately recognize who he is!) in Dallas. The music was great but it was ear-splittingly loud where we were sitting. I was wishing I had brought the ear plugs I had intended to bring but forgot (because of my chemo-brain?). One benefit of the concert for those of us involved with chemotherapy was that there was a lot of medicinal mary jane in the air around us. Wow, I haven’t had any nausea since the concert! But I’m always hungry….
The next couple of weeks will be busy for us. We leave on Tuesday to go to back to Houston again, this time for my “mid-protocol” examination and evaluation, with labs and a bone marrow biopsy. If things are going as expected and they don’t think my side effects are too worrisome, we’ll return to Denton next Thursday afternoon and start Round Four the following Monday. I had the option of doing the chemotherapy in Houston, but decided I didn’t want to have to travel the three hundred miles back to Denton feeling as badly as I did after my last course of drugs. Now that I have more confidence in the local nurses I’d just as soon get the drugs here in Denton and be able to go straight home to rest and recover. We’re going to Houston a day earlier than we have to because we’re going to try to see the nearby NASA museum while we’re there. Whether we actually do or not will depend on how tired I am after we get there. My experience with our little overnight trip last month makes me suspect that I’m going to be more tired than I would like. We’ll see.
And that’s about all for this time. I’ll try to get another short update out after we return from Houston at the end of the week but it may depend on how tired I am and what all we have to do to get ready for the start of the fourth (of the six planned) round of drugs. Wish us luck on our trip to Houston this week.
Dave
dreck@prodigy.net
A BABY ASKED:
A baby asked God, “They tell me you are sending me to earth tomorrow, but how am I going to live there, being so small and helpless?
“Your angel will be waiting for you and will take care of you.”
The child further inquired, “But tell me, here in Heaven I don’t have to do anything but sing and smile to be happy.”
God said, “Your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.”
Again the child asked, “And how am I going to understand when people talk to me and I don’t understand the language?”
God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”
“And what am I going to do when I want to talk to you?”
God said, “Your angel will place your hands together and teach you how to pray.”
“Who will protect me?”
God said, “Your angel will defend you even if it means risking its life.”
“But I will be sad because I will not see you anymore.”
God said, “Your angel will always talk to you about Me and will teach you the way back to Me, even though I will always be next to you.”
At this moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, “God, if I am to leave now, please tell me my angel’s name.”
“You can simply call her, ‘Mom’.”
Sunday, April 13, 2008
Spring Break!
Dave’s Great Adventure, Book Three
Chapter 2, Verse 4
April 13, 2008
Spring Break!
So, last Monday Kathy and I showed up at the clinic right on time, at 9AM, which of course means that we were actually late, because we almost always get where we need to be early. It’s been that way ever since we got married. We once got to the airport three and a half hours early for a flight!
Anyway, we checked in, got our paperwork and headed back to the “Infusion Room.” I went to a chair in the inner far corner which is a little more out of the way and perhaps a little quieter than the rest, and we set up shop. Whenever we go in for the infusions, we are prepared. The infusions take hours, so we have books and magazines, my MP3 player, my “Mascot Dave” blankie and my TNT (soon to be revised) cap to pull down over my eyes when I get tired. We were getting our stuff organized when a nurse we hadn’t met before came by and told us she was just waiting for the orders so she could get the drugs started. I asked about when the blood count was going to be done, as I knew my doc had ordered one to be done before the start of more drugs. She said I didn’t have one ordered. “Au contraire,” I said (in English, of course, because I really can’t speak French). So she checked with the other nurses and they agreed that I didn’t have one ordered. I asked if they’d check again and, indeed, they found that there was a CBC ordered to be done before the start of the infusions. So then I thought, not unreasonably, that she’d draw the blood. But she said that, no, it would be “quicker” somehow if I’d leave the infusion room and go wait in line at the lab. “Quicker” indeed! So I left, waited at the end of the line in the lab area (surrounded by sick folks, whom I try to avoid when possible) and after about thirty minutes got the blood drawn.
I returned to Kathy and my chair and waited for the results before the start of the infusions. And waited. And waited. After about forty-five minutes the nurse came back with the numbers and told us that there was a problem, that my platelets, which had been at 90,000 on the previous Thursday, only four days prior, were now at only 64,000. And that was a problem according to the folks in Houston, whom they’d contacted, because I couldn’t get the drugs unless my platelets were more than 75,000. So they sent us home to await further instructions.
We got home and sat there, wondering what to do. We had planned the whole week around the infusions and my recovery from them. Suddenly we had no plans, because as we left the clinic we were told we wouldn’t try again for at least a week. What to do? We could have decided to catch up on house cleaning or pulling weeds in the yard. Yuck! Instead, just like those loveable drunks in “Animal House,” we decided to go on a “road trip.” It was a nice idea, but not a good idea.
Kathy and I had been thinking for a month or more that it might be nice to visit Nacogdoches, Texas, where there is an arboretum on the campus of Stephen F. Austin State University. They have an azalea festival about this time of year, and when we found that we had a “week off,” we decided to take a short overnight trip out to east Texas. Nacogdoches is also the oldest town in Texas, they say, and has some historical sights, including a college building dating back to the days of the Republic of Texas, when Texas was its own country and not part of the U.S. Back then Texas was much larger than it is now and included what later became the panhandle of Oklahoma, most of eastern New Mexico, the southwest corner of Kansas, most of the Rocky Mountains in Colorado and a piece of the Rockies in southern Wyoming. Anyway, a trip to see the town and the flowers, especially after we’d been cooped up for so long, sounded like a great idea. I was feeling pretty good too, and wanted to get out.
Problem was, it turned out, I felt pretty good as long as I wasn’t doing very much. And just driving to Nacogdoches turned out to be “doing very much.” It was only about a 225 mile drive, and a nice drive too, but I was pretty tired when we got to town and needed to rest in our hotel room for a while before we could get out to see the arboretum. But later that afternoon we visited the gardens and enjoyed the exhibits, but found we had missed the blooming of most of the azaleas by a couple of weeks. After a couple of hours there I was really tired and we went back to our room. We never got out for the walking tour of the city which I really wanted to do.
The next day, on the way home, we took a little detour to Crockett, Texas, where my sister Diane lives. We had a beautiful drive through the Davy Crockett National Forest to get to Crockett, and then spent a few hours with Diane and her family, having lunch with her and her son Zak while we were in town. We then drove home. But by the time we got home I was just exhausted from the drive. And I was aching all over again, especially in my arms, back, neck and shoulders. The pain has persisted since the drive, too, and anything I do seems to make my joints hurt. And I thought I was getting better.
I’d been feeling quite a bit better over the last couple of weeks, not well, but better. Many of my joints still ached but not quite as badly. I heard from Anna again (of mud-wrestling fame) who was reporting on her husband, Larry, who is also getting Avastin. He’s getting his infusions at M. D. Anderson in Houston, and so they go there every two weeks, whereas I only get the stuff every four weeks or so. Well, after two treatments with the Avastin Larry reports that his joints are feeling achy as well. He says it feels arthritic, which is exactly what I was thinking, so I’m guessing that all these pains are caused by the Avastin after all. I had a few after my first round and many more after the second dose, just like Larry. Interestingly, the long list of side effects doesn’t mention joint and body aches very prominently. I suppose that when the “side effects” include bleeding to death, fatal bowel perforations, heart attacks, strokes, brain damage, kidney failure and the like, that achy joints don’t seem very important.
I have found that it’s primarily my small joints that are bothered by the drugs; my wrists, hands, ribs, spine and so forth. And it’s amazing how many small joints one has. You don’t think about all the joints in your wrist until they all hurt when you wash your hands, pull your socks on or push yourself up to get out of the bathtub. Or how many joints you have in your ribcage (everywhere a rib joins the sternum in the front and the spinal column, in back) until you lie down. Curiously, I think, the joints that have caused me the most problems over the years, my knees, are seemingly not bothered at all by the drugs, at least not so far.
The fact that I’m still aching and tired from the last round of drugs really makes me not look forward to doing it again, but of course I have to. In the past, I pretty much always felt completely recovered from one round of drugs before we started in with the next round. But now we’re about ready to go again and I still feel bad. It makes me wonder how much worse I’ll feel in the coming weeks. I’ve mentioned before that early in my confrontations with this disease I was actually anxious to get going, to do as much as we could to try to eradicate the disease. I wanted to do chemotherapy often and in large amounts. But now that I have finally come to the realization that the leukemia is not going away (permanently, anyway), I see the trials of the chemotherapy as another hoop I have to jump through before I get to the next hoop I have to jump through. I get tired of being tired, and now I’m tired of feeling sore all the time too. But, what are you going to do? Doing nothing is a death sentence and so you do what you have to do. Being tired and achy is my “new normal.”
After we got home from our little journey, we rested up for a couple of days. My repeat blood count which was done on Thursday was okay, with a decent neutrophil count and platelets up to 80,000. I figured it would be safe to go to the symphony, and really wanted to hear a concert since we hadn’t been to one in months. So we went on Friday night and things went very well. It doesn’t take much effort to sit in a concert hall listening to classical music. It’s quite relaxing, in fact. There was very little coughing going on in the auditorium and none at all near us. The concert was a very pleasant presentation of Beethoven’s Fifth Symphony as well as his Fifth Piano Concerto.
So I figured we could probably go to church, too, though church is, for folks like me with health issues, a little scarier. There are a lot more kids in church than in a concert hall, carrying lots more colds. And there is the custom in the Methodist church of greeting and shaking hands with everyone around you, something I try to avoid doing these days. But, we thought we could go and sit in the generally sparsely occupied balcony and be by ourselves. That didn’t work. When we arrived at the church this morning and took up residence in the balcony we were almost completely alone. But then a couple of families with small children came up to the balcony as well, taking seats right behind us. One of the kids had a nice, juicy cough. Kathy and I looked at each other and just with eye contact knew we had to move. So we got up and moved to the other side of the church and into relative isolation. I’m afraid we probably hurt the families’ feelings by leaving when they got there but I suppose it was the prudent thing for us to do.
I still haven’t heard anything officially from the Leukemia and Lymphoma Society corporate offices yet, but I’m guessing they really like the idea about changing TNT’s name. It’s probably just that they have to look at the overall costs of changing all the logos and such. Meanwhile we’re charging ahead with the process, though I noticed that Coach Neal erroneously sent out a memo to the team from the “TnT” coach. His wife, Becky, is doing better. In Dallas recently there was a marathon in which many of our team participated. The team got together to make up posters and Becky proudly proposed making one that proclaimed, “Go Big D TITs.” Can you believe they wouldn’t let her do it! I told her that there were always going to be folks who opposed creativity and innovation. Meanwhile, Kim (whom I’ve mentioned as recently having had a third anniversary of being free of lymphoma) was out doing fundraising for the team and was picking up fund raising items from both Bone Daddy’s and Hooter’s! That goes right along with the new theme, doesn’t it. She was doing it for Jane, our fund-raiser extraordinaire, who had arranged for the donations. And speaking of Jane, she has her own little fund raising scheme that she calls “Jane’s Jugs,” where she sets up raffles by selling tickets and collecting dollar bills in milk jugs, dollars that eventually go to the accounts of the runners on our team. You see where this team’s mind is? Coach Neal is a bit shyer than Jane, though, and can’t make himself mention it by name in his updates. He just refers to it as “Jane’s Politically Incorrect Fund Raising Plan.”
I recently mentioned the voice that kept making me, or at least allowing me, to eat everything in sight. Well, I’m apparently not the only person in the family who hears the voices. My brother Doug, who is a Ph.D. professor of sociology at Winthrop University, wrote with this confession. “I've heard those little voices for years. Mine say "You're a poor, overworked prof whose students don't give a rat's ass and whose colleagues are a bunch of whining, pinko low-lifes. Eat whatever you want! Afterwards, go kill a few of them and bury their bodies in the Dean's yard." My doc says with the proper medication I'll stop hearing those voices--but the voices are telling me to kill the doc first. My Dean isn't gonna be very happy!” Man, I think I need to see about sending Doug some Thorazine to help out with those voices!
ERRATA: Just like a famous/devious/popular/scheming/hardworking/persistent [pick any one or two] presidential candidate, I “misremembered” a few things which I mentioned in my last letter. No, it wasn’t about sniper fire. The last time I was under attack from sniper fire was in Vietnam in 1971, and I haven’t written about it in any books nor mentioned it in speeches. But I’m pretty sure I remember it actually happening. Hard to “misremember” sniper fire. But I digress, as I commonly do. My chemo-addled brain (at least that’s my excuse) recorded some facts incorrectly. Doug tells me that he’s not quite as hardy as I thought, because he doesn’t keep his thermostat at 60 degrees all winter. Actually, he told me they keep their thermostat at a temperate 65 degrees all winter. “We’re into conservation, not hair shirts….” he said in a message correcting my faulty memory. And similarly, Bonnie wrote to remind me that the message I got from her last winter, about it being 43 degrees in the house, was a one-time thing. Seems they had a new dog in the house and left the patio doors open that night to allow the new pet to get in and out. But they’re still pretty tough folks; when it gets down to 55 in Bonnie’s office, they turn the heat on with the thermostat set to 64 degrees. Bonnie probably just wants enough heat to be able to feel her fingers when she’s working at her computer or doing her artwork. Let’s see, what else. Oh yeah, in writing to Janet up in Colorado I called her “Judy” in my message. Arrgh! I hate when I do that! That’s all the corrections I can think of at the moment.
And so tomorrow morning we’ll get up early again, get to the clinic (early of course) and we’ll start Round Three. I’ll let you know how the infusions and the recovery go in the coming week or so. Thanks again for all your kind thoughts, messages and prayers. I’m truly blessed to have so many wonderful friends.
Dave
dreck@prodigy.net
“Suffering ceases to be suffering at the moment it finds a meaning.” –Viktor Frankl, as quoted in the sermon at church today. The meaning, or purpose, for me is to find out if this stuff works, for all those folks who are going to come after me and will need a treatment for their disease.
Chapter 2, Verse 4
April 13, 2008
Spring Break!
So, last Monday Kathy and I showed up at the clinic right on time, at 9AM, which of course means that we were actually late, because we almost always get where we need to be early. It’s been that way ever since we got married. We once got to the airport three and a half hours early for a flight!
Anyway, we checked in, got our paperwork and headed back to the “Infusion Room.” I went to a chair in the inner far corner which is a little more out of the way and perhaps a little quieter than the rest, and we set up shop. Whenever we go in for the infusions, we are prepared. The infusions take hours, so we have books and magazines, my MP3 player, my “Mascot Dave” blankie and my TNT (soon to be revised) cap to pull down over my eyes when I get tired. We were getting our stuff organized when a nurse we hadn’t met before came by and told us she was just waiting for the orders so she could get the drugs started. I asked about when the blood count was going to be done, as I knew my doc had ordered one to be done before the start of more drugs. She said I didn’t have one ordered. “Au contraire,” I said (in English, of course, because I really can’t speak French). So she checked with the other nurses and they agreed that I didn’t have one ordered. I asked if they’d check again and, indeed, they found that there was a CBC ordered to be done before the start of the infusions. So then I thought, not unreasonably, that she’d draw the blood. But she said that, no, it would be “quicker” somehow if I’d leave the infusion room and go wait in line at the lab. “Quicker” indeed! So I left, waited at the end of the line in the lab area (surrounded by sick folks, whom I try to avoid when possible) and after about thirty minutes got the blood drawn.
I returned to Kathy and my chair and waited for the results before the start of the infusions. And waited. And waited. After about forty-five minutes the nurse came back with the numbers and told us that there was a problem, that my platelets, which had been at 90,000 on the previous Thursday, only four days prior, were now at only 64,000. And that was a problem according to the folks in Houston, whom they’d contacted, because I couldn’t get the drugs unless my platelets were more than 75,000. So they sent us home to await further instructions.
We got home and sat there, wondering what to do. We had planned the whole week around the infusions and my recovery from them. Suddenly we had no plans, because as we left the clinic we were told we wouldn’t try again for at least a week. What to do? We could have decided to catch up on house cleaning or pulling weeds in the yard. Yuck! Instead, just like those loveable drunks in “Animal House,” we decided to go on a “road trip.” It was a nice idea, but not a good idea.
Kathy and I had been thinking for a month or more that it might be nice to visit Nacogdoches, Texas, where there is an arboretum on the campus of Stephen F. Austin State University. They have an azalea festival about this time of year, and when we found that we had a “week off,” we decided to take a short overnight trip out to east Texas. Nacogdoches is also the oldest town in Texas, they say, and has some historical sights, including a college building dating back to the days of the Republic of Texas, when Texas was its own country and not part of the U.S. Back then Texas was much larger than it is now and included what later became the panhandle of Oklahoma, most of eastern New Mexico, the southwest corner of Kansas, most of the Rocky Mountains in Colorado and a piece of the Rockies in southern Wyoming. Anyway, a trip to see the town and the flowers, especially after we’d been cooped up for so long, sounded like a great idea. I was feeling pretty good too, and wanted to get out.
Problem was, it turned out, I felt pretty good as long as I wasn’t doing very much. And just driving to Nacogdoches turned out to be “doing very much.” It was only about a 225 mile drive, and a nice drive too, but I was pretty tired when we got to town and needed to rest in our hotel room for a while before we could get out to see the arboretum. But later that afternoon we visited the gardens and enjoyed the exhibits, but found we had missed the blooming of most of the azaleas by a couple of weeks. After a couple of hours there I was really tired and we went back to our room. We never got out for the walking tour of the city which I really wanted to do.
The next day, on the way home, we took a little detour to Crockett, Texas, where my sister Diane lives. We had a beautiful drive through the Davy Crockett National Forest to get to Crockett, and then spent a few hours with Diane and her family, having lunch with her and her son Zak while we were in town. We then drove home. But by the time we got home I was just exhausted from the drive. And I was aching all over again, especially in my arms, back, neck and shoulders. The pain has persisted since the drive, too, and anything I do seems to make my joints hurt. And I thought I was getting better.
I’d been feeling quite a bit better over the last couple of weeks, not well, but better. Many of my joints still ached but not quite as badly. I heard from Anna again (of mud-wrestling fame) who was reporting on her husband, Larry, who is also getting Avastin. He’s getting his infusions at M. D. Anderson in Houston, and so they go there every two weeks, whereas I only get the stuff every four weeks or so. Well, after two treatments with the Avastin Larry reports that his joints are feeling achy as well. He says it feels arthritic, which is exactly what I was thinking, so I’m guessing that all these pains are caused by the Avastin after all. I had a few after my first round and many more after the second dose, just like Larry. Interestingly, the long list of side effects doesn’t mention joint and body aches very prominently. I suppose that when the “side effects” include bleeding to death, fatal bowel perforations, heart attacks, strokes, brain damage, kidney failure and the like, that achy joints don’t seem very important.
I have found that it’s primarily my small joints that are bothered by the drugs; my wrists, hands, ribs, spine and so forth. And it’s amazing how many small joints one has. You don’t think about all the joints in your wrist until they all hurt when you wash your hands, pull your socks on or push yourself up to get out of the bathtub. Or how many joints you have in your ribcage (everywhere a rib joins the sternum in the front and the spinal column, in back) until you lie down. Curiously, I think, the joints that have caused me the most problems over the years, my knees, are seemingly not bothered at all by the drugs, at least not so far.
The fact that I’m still aching and tired from the last round of drugs really makes me not look forward to doing it again, but of course I have to. In the past, I pretty much always felt completely recovered from one round of drugs before we started in with the next round. But now we’re about ready to go again and I still feel bad. It makes me wonder how much worse I’ll feel in the coming weeks. I’ve mentioned before that early in my confrontations with this disease I was actually anxious to get going, to do as much as we could to try to eradicate the disease. I wanted to do chemotherapy often and in large amounts. But now that I have finally come to the realization that the leukemia is not going away (permanently, anyway), I see the trials of the chemotherapy as another hoop I have to jump through before I get to the next hoop I have to jump through. I get tired of being tired, and now I’m tired of feeling sore all the time too. But, what are you going to do? Doing nothing is a death sentence and so you do what you have to do. Being tired and achy is my “new normal.”
After we got home from our little journey, we rested up for a couple of days. My repeat blood count which was done on Thursday was okay, with a decent neutrophil count and platelets up to 80,000. I figured it would be safe to go to the symphony, and really wanted to hear a concert since we hadn’t been to one in months. So we went on Friday night and things went very well. It doesn’t take much effort to sit in a concert hall listening to classical music. It’s quite relaxing, in fact. There was very little coughing going on in the auditorium and none at all near us. The concert was a very pleasant presentation of Beethoven’s Fifth Symphony as well as his Fifth Piano Concerto.
So I figured we could probably go to church, too, though church is, for folks like me with health issues, a little scarier. There are a lot more kids in church than in a concert hall, carrying lots more colds. And there is the custom in the Methodist church of greeting and shaking hands with everyone around you, something I try to avoid doing these days. But, we thought we could go and sit in the generally sparsely occupied balcony and be by ourselves. That didn’t work. When we arrived at the church this morning and took up residence in the balcony we were almost completely alone. But then a couple of families with small children came up to the balcony as well, taking seats right behind us. One of the kids had a nice, juicy cough. Kathy and I looked at each other and just with eye contact knew we had to move. So we got up and moved to the other side of the church and into relative isolation. I’m afraid we probably hurt the families’ feelings by leaving when they got there but I suppose it was the prudent thing for us to do.
I still haven’t heard anything officially from the Leukemia and Lymphoma Society corporate offices yet, but I’m guessing they really like the idea about changing TNT’s name. It’s probably just that they have to look at the overall costs of changing all the logos and such. Meanwhile we’re charging ahead with the process, though I noticed that Coach Neal erroneously sent out a memo to the team from the “TnT” coach. His wife, Becky, is doing better. In Dallas recently there was a marathon in which many of our team participated. The team got together to make up posters and Becky proudly proposed making one that proclaimed, “Go Big D TITs.” Can you believe they wouldn’t let her do it! I told her that there were always going to be folks who opposed creativity and innovation. Meanwhile, Kim (whom I’ve mentioned as recently having had a third anniversary of being free of lymphoma) was out doing fundraising for the team and was picking up fund raising items from both Bone Daddy’s and Hooter’s! That goes right along with the new theme, doesn’t it. She was doing it for Jane, our fund-raiser extraordinaire, who had arranged for the donations. And speaking of Jane, she has her own little fund raising scheme that she calls “Jane’s Jugs,” where she sets up raffles by selling tickets and collecting dollar bills in milk jugs, dollars that eventually go to the accounts of the runners on our team. You see where this team’s mind is? Coach Neal is a bit shyer than Jane, though, and can’t make himself mention it by name in his updates. He just refers to it as “Jane’s Politically Incorrect Fund Raising Plan.”
I recently mentioned the voice that kept making me, or at least allowing me, to eat everything in sight. Well, I’m apparently not the only person in the family who hears the voices. My brother Doug, who is a Ph.D. professor of sociology at Winthrop University, wrote with this confession. “I've heard those little voices for years. Mine say "You're a poor, overworked prof whose students don't give a rat's ass and whose colleagues are a bunch of whining, pinko low-lifes. Eat whatever you want! Afterwards, go kill a few of them and bury their bodies in the Dean's yard." My doc says with the proper medication I'll stop hearing those voices--but the voices are telling me to kill the doc first. My Dean isn't gonna be very happy!” Man, I think I need to see about sending Doug some Thorazine to help out with those voices!
ERRATA: Just like a famous/devious/popular/scheming/hardworking/persistent [pick any one or two] presidential candidate, I “misremembered” a few things which I mentioned in my last letter. No, it wasn’t about sniper fire. The last time I was under attack from sniper fire was in Vietnam in 1971, and I haven’t written about it in any books nor mentioned it in speeches. But I’m pretty sure I remember it actually happening. Hard to “misremember” sniper fire. But I digress, as I commonly do. My chemo-addled brain (at least that’s my excuse) recorded some facts incorrectly. Doug tells me that he’s not quite as hardy as I thought, because he doesn’t keep his thermostat at 60 degrees all winter. Actually, he told me they keep their thermostat at a temperate 65 degrees all winter. “We’re into conservation, not hair shirts….” he said in a message correcting my faulty memory. And similarly, Bonnie wrote to remind me that the message I got from her last winter, about it being 43 degrees in the house, was a one-time thing. Seems they had a new dog in the house and left the patio doors open that night to allow the new pet to get in and out. But they’re still pretty tough folks; when it gets down to 55 in Bonnie’s office, they turn the heat on with the thermostat set to 64 degrees. Bonnie probably just wants enough heat to be able to feel her fingers when she’s working at her computer or doing her artwork. Let’s see, what else. Oh yeah, in writing to Janet up in Colorado I called her “Judy” in my message. Arrgh! I hate when I do that! That’s all the corrections I can think of at the moment.
And so tomorrow morning we’ll get up early again, get to the clinic (early of course) and we’ll start Round Three. I’ll let you know how the infusions and the recovery go in the coming week or so. Thanks again for all your kind thoughts, messages and prayers. I’m truly blessed to have so many wonderful friends.
Dave
dreck@prodigy.net
“Suffering ceases to be suffering at the moment it finds a meaning.” –Viktor Frankl, as quoted in the sermon at church today. The meaning, or purpose, for me is to find out if this stuff works, for all those folks who are going to come after me and will need a treatment for their disease.
Sunday, April 6, 2008
Ode To Neupogen
Dave’s Great Adventure, Book Three
Chapter 2, Verse 3
April 6, 2008
Ode To Neupogen
And here we
Go again,
Getting shots
Of Neupogen.
Sticking needles
In my belly.
Who devised this,
I mean…really?
Using needles
Everyday
Helps good white cells
Come my way.
Expensive drugs
Make me well
Just enough for
Chemo hell.
Neupogen
Makes me ache
This chemo stuff,
No piece of cake.
They build me up
Then beat me down
Feel so crappy
Can’t go to town.
But there’s a reason
For all this strife.
Maybe it’ll
Extend my life.
I got tired of writing prose and decided to try my hand at poetry. You know, on second thought, I’d better seriously reconsider this move.
The day after I sent my last message out I went back to the clinic to get another blood count done. I do this at least once weekly. I was pleased to hear that my counts had stabilized, though at low levels (I’ll spare you all the details of the various cell types this week; I suppose in many cases, when all these in-depth numbers start appearing on the page, many of you have your eyes roll back in your head and you start twitching and making gagging sounds…I don’t want to harm anyone). So, my counts hadn’t dropped any more in week three, in fact, they were very slightly up. But not enough to start more chemotherapy drugs next week, so I was started back on the Neupogen, which I gave myself by injection daily for four days to get my white cells back up.
Neupogen is sildenafil…oh wait, that’s wrong! Sildenafil gets something else up (it’s Viagra)! No, Neupogen is filgrastim, and is called “granulocyte colony stimulating factor” (G-CSF). The reason it’s called “granulocyte” colony stimulating factor, when what I need are neutrophils, is that “granulocyte” is another name for neutrophil. And if that’s, not enough, neutrophils are also called “segs” (for “segmented” white blood cells) and “bands” when they’re immature. Are those enough names for one kind of blood cell?
Anyway, and I think this is cool, they isolated the human gene that makes the body want to produce neutrophils (granulocytes) and somehow put it into e. coli bacteria (with a very tiny syringe?). Then they farm these guys out in Petri dishes and collect the G-CSF they make. I wonder how many e. coli they have to round up and herd into a Petri dish to make a dose of Neupogen. I suppose it’s a lot and would explain why Amgen charges almost $400 a dose for the stuff. But this stuff is magic. My white count was about 1,500 last Monday, but by Thursday morning and after just three of the doses of Neupogen, it was back up to almost 14,000 when I saw my doc for a pre-chemo checkup. Most of the white cells (just short of 12,000) were the bacteria fighting neutrophils. So I celebrated. How you ask? With big steak dinner and champagne, maybe?? No, I had a big fat Greek salad while my white count was high enough for that to be safe!
Giving myself the shots isn’t a big deal, though our friend Susanne, in Denver thought it was. She’s a nurse, and she said it was hard for her to imagine a doc giving anyone a shot, let alone to himself, and thought my actions qualified as a miracle! The Neupogen comes pre-packaged in small syringes with very small needles, 27 gauge, for those of you who are familiar with needle sizes. I inject the shots into my little (uh, maybe medium size and growing?) roll of fat on my belly, and hardly feel it. What I do feel, however, are the generally mild side effects. Usually I feel a little flu-like at first, but then I get bone pain. When the marrow gets into overdrive making new blood cells, the marrow-containing bones can feel the pressure and start to hurt. That usually includes the long bones, the ribs and the sternum. I feel the aches mostly in my ribs and sternum (breastbone) and they aren’t normally too bad. Most of the time I just take some Tylenol for the aches, but what bothers me the most is that at night, when I’m lying down, my chest hurts with each heartbeat, as the heart thumps up against the back side of the sternum. The pain isn’t all that bad, just kinda worrisome feeling that pain in the middle of your chest.
I’ve got another little problem sneaking up on me, too, one that you don’t normally associate with someone on chemotherapy. I’m getting fat! Many folks doing chemo lose weight, because of the side effects, but not me, not this time. In the past I have gained weight transiently with the steroids and fluids I have been given, but this time I’m getting almost no steroids, and far less in terms of fluid infusions with the drugs. I always watch my weight and normally weigh myself every day to make sure I’m doing okay, and usually I can keep my weight between about 176 and about 179 or so. I was at about my normal 178 when I started the chemotherapy. But as of this morning I was up to 184. It’s not the drugs, I’m pretty sure, it’s just that I’m eating too much.
You see, usually I can control my diet pretty well, and restrict myself when my weight is creeping up. But now I find that I have a voice inside that is always giving me excuses to eat a little more than I need. I think this voice is related to my Id, but is much more seductive, perhaps being my Id’s sexy little cousin or something. When my Id says I should eat more, it says, “Eat, dammit, eat!” But I can resist that voice easily and push away from the table and skip the piece of pie, or whatever. My Superego is usually in charge. But this voice I’m hearing now is much harder to ignore. If I see a piece of key lime pie, or pecan pie, or something I love (hot wings, smoked BBQ ribs, etc.), the voice, rather than demanding that I eat it, softly whispers to me, “You poor, poor thing, you have leukemia and you’re going through chemotherapy. Of COURSE you can have that pie. You can have whatEVER you want.” I, fool that I am, usually listen and eat up. I’ve got to find a way to block that voice or I’ll be at 200 pounds before I finish this regimen of chemotherapy. Who ever heard of gaining weight during chemotherapy?
Hey, I’ve had universal support for changing our Team In Training nickname from TNT to TIT…well, from at least a couple of folks. Anna, one of our walking coaches, says that she and Suzanne, another coach, have long thought that they’d get a fair amount of donations if they sponsored a TNT Mud Wrestling competition. She suggested that they’d probably attract more male participants or observers if they were in the TITs instead. Maybe that should be the Mud Wrestling CompeTITion! She’s probably right. You know, you have TNT versus TIT. Well, guys like to blow things up, and so TNT is attractive, I suppose. But, “BOOM” and it’s all over, nothing else to look at. But other things have more lasting, universal appeal to guys…. On a related topic, Meg, another team member, said I probably used the wrong people as examples of who might sign up for the wet T-shirt contests. She said she didn’t think Laura and Kelly together could fill out even one wet T-shirt, much less two (you know how runners are built, right?). Now, I never, ever would have suggested such a thing! I never even notice these kinds of issues. Really! No, I mean it…really (smirk)! But I suppose that even as I write these words, the folks up at corporate are redesigning our logos using concentric circles and conical shaped devices to draw attention to our new nurturing image.
On another TNT (TIT??) related note, you guys have no doubt noticed my frequent references to Lou and Joan, our long-time friends from Colorado who have, on a regular, pretty much daily basis, been sending me friendship and get well cards. Well, they also donate to the Leukemia and Lymphoma Society, and recently received an invitation to join a TNT team in the Denver area. They’re likely going to join up soon and do a walking marathon in Denver next October. I want all my TNT teammates to give them a big cheer, okay?
Kelly (who hasn’t as of yet officially signed up for the wet T-shirt contest but assured me that she would) wrote to comment on Tom’s suggestion that I should perhaps get a massage because of all my body aches. She said, “Yes, maybe a massage would be good for you. Although, according to your account, having to shed clothing was a startling and horrifying experience for you. Sweet revenge for all of us ladies who have ever laid on atable in the doc's office as he says "scoot down a little more...." Maybe the massage wouldn't be so relaxing for you!” (See September 1, 2004 entry of my story). Well, you know, it really wasn’t especially relaxing, because I wasn’t absolutely, completely sure what was going on and didn’t expect to have to get totally nekkid in front of a stranger, in a motel room, fer cryin’ out loud! Why should I have to get nekkid when all that hurt was my neck and back! And I wasn’t entirely sure what Martina was up to. I half expected her to grab for Mr. Happy and was nervous just thinking about that possibility. If she had, I couldn’t very well scream and run out of the room and into the hallway completely undressed, could I? “Sweet revenge” indeed! Every woman who has heard this story, including many of my former patients, has been beside herself with laughter at how uncomfortable I was, including my wife and my daughter. That’s just pure schadenfreud and you all should be really, really ashamed of yourselves at having such a good time at my timidity (is that a word?). Actually, it’s just that I’m extremely shy. Yeah, that’s it.
I probably managed to irritate both the Coloradans and the Texans with my last little bit about climate intolerance (and the Montanans, too, I suppose). Regarding Texans’ general intolerance to cold, and the similar intolerance to heat by Coloradans, my brother Dan, who lives in nearby Grapevine, Texas, wrote in to suggest it’s basically just what you’ve become accustomed to, and that cold in the fall feels worse because you’re used to the heat. And heat in the spring feels correspondingly hotter because you’re used to the cold. But I just think that we have fundamentally changed the way we acclimate to the weather in recent decades. It used to be that, for millennia, we as a species adapted to the climate. But now we adapt the climate to us. We feel the need to have a bubble of air around us that is a constant 75 degrees, or whatever, whether we’re in our car, home, at the theater, office or just about anywhere. And we use prodigious amounts of natural resources to accomplish that goal. I think the Europeans are much more conservative in the use of heating and cooling than we are. Few homes, hospitals, stores or cars are air conditioned over there, and it does reach 100 degrees from time to time, with high humidity. In Europe you just deal with it! And in the winter, the heat doesn’t come on until some arbitrary date in late October, no matter what the temperatures outside are. People just put on sweaters and go about their business. No one is ever going to mistake me for a “greenie” or a tree-hugger, but I do believe in trying to minimize consumption of resources (but just when it suits me, I guess, since I don’t drive a Honda Fit or a Prius). In the winter, we have our thermostat at 70 degrees during the day with a set back to 55 degrees at night (and did so in Colorado, too). But then there’s my brother Doug in South Carolina. He keeps his thermostat at 60 degrees all winter long. But the really tough, conservation minded folks are our neighbors, Bonnie and Quinn. I don’t think they even turn on their furnace until the outside temperature is below freezing. Or unless they’re having company. I remember an e-mail I got from Bonnie last winter and she said the indoor temperature in their home was, I believe, 43 degrees! But now I’ll get off my conservation soap box.
This last week has been a pretty good one for Kathy and me. I’ve felt better and we have been able to get out some, though we still avoid crowds. The flu is still officially present, though I haven’t heard on even one person who actually has had it. But we’ve been able to get out to an occasional restaurant (where “the voice” always encourages me to ingest far too many calories). Generally we try to go out during the off hours when places aren’t very crowded. We’ve also made it to a few stores for just a little bit of shopping. But yesterday, we got out and made a short daytrip up to a nearby lake and had a great afternoon just being outside. We played a couple of card games and just enjoyed the beautiful spring weather with temperatures in the mid-60s. It was so nice to be outside, because we know that as of next week, starting tomorrow, we’ll be trapped in the house again for a couple of weeks.
And I think I’ve rambled on long enough for now. I’ll close this and get it in the mail. Thanks for all your “fan mail” that I’ve gotten. I always enjoy your feedback. Until next time….
Dave
dreck@prodigy.net
Chapter 2, Verse 3
April 6, 2008
Ode To Neupogen
And here we
Go again,
Getting shots
Of Neupogen.
Sticking needles
In my belly.
Who devised this,
I mean…really?
Using needles
Everyday
Helps good white cells
Come my way.
Expensive drugs
Make me well
Just enough for
Chemo hell.
Neupogen
Makes me ache
This chemo stuff,
No piece of cake.
They build me up
Then beat me down
Feel so crappy
Can’t go to town.
But there’s a reason
For all this strife.
Maybe it’ll
Extend my life.
I got tired of writing prose and decided to try my hand at poetry. You know, on second thought, I’d better seriously reconsider this move.
The day after I sent my last message out I went back to the clinic to get another blood count done. I do this at least once weekly. I was pleased to hear that my counts had stabilized, though at low levels (I’ll spare you all the details of the various cell types this week; I suppose in many cases, when all these in-depth numbers start appearing on the page, many of you have your eyes roll back in your head and you start twitching and making gagging sounds…I don’t want to harm anyone). So, my counts hadn’t dropped any more in week three, in fact, they were very slightly up. But not enough to start more chemotherapy drugs next week, so I was started back on the Neupogen, which I gave myself by injection daily for four days to get my white cells back up.
Neupogen is sildenafil…oh wait, that’s wrong! Sildenafil gets something else up (it’s Viagra)! No, Neupogen is filgrastim, and is called “granulocyte colony stimulating factor” (G-CSF). The reason it’s called “granulocyte” colony stimulating factor, when what I need are neutrophils, is that “granulocyte” is another name for neutrophil. And if that’s, not enough, neutrophils are also called “segs” (for “segmented” white blood cells) and “bands” when they’re immature. Are those enough names for one kind of blood cell?
Anyway, and I think this is cool, they isolated the human gene that makes the body want to produce neutrophils (granulocytes) and somehow put it into e. coli bacteria (with a very tiny syringe?). Then they farm these guys out in Petri dishes and collect the G-CSF they make. I wonder how many e. coli they have to round up and herd into a Petri dish to make a dose of Neupogen. I suppose it’s a lot and would explain why Amgen charges almost $400 a dose for the stuff. But this stuff is magic. My white count was about 1,500 last Monday, but by Thursday morning and after just three of the doses of Neupogen, it was back up to almost 14,000 when I saw my doc for a pre-chemo checkup. Most of the white cells (just short of 12,000) were the bacteria fighting neutrophils. So I celebrated. How you ask? With big steak dinner and champagne, maybe?? No, I had a big fat Greek salad while my white count was high enough for that to be safe!
Giving myself the shots isn’t a big deal, though our friend Susanne, in Denver thought it was. She’s a nurse, and she said it was hard for her to imagine a doc giving anyone a shot, let alone to himself, and thought my actions qualified as a miracle! The Neupogen comes pre-packaged in small syringes with very small needles, 27 gauge, for those of you who are familiar with needle sizes. I inject the shots into my little (uh, maybe medium size and growing?) roll of fat on my belly, and hardly feel it. What I do feel, however, are the generally mild side effects. Usually I feel a little flu-like at first, but then I get bone pain. When the marrow gets into overdrive making new blood cells, the marrow-containing bones can feel the pressure and start to hurt. That usually includes the long bones, the ribs and the sternum. I feel the aches mostly in my ribs and sternum (breastbone) and they aren’t normally too bad. Most of the time I just take some Tylenol for the aches, but what bothers me the most is that at night, when I’m lying down, my chest hurts with each heartbeat, as the heart thumps up against the back side of the sternum. The pain isn’t all that bad, just kinda worrisome feeling that pain in the middle of your chest.
I’ve got another little problem sneaking up on me, too, one that you don’t normally associate with someone on chemotherapy. I’m getting fat! Many folks doing chemo lose weight, because of the side effects, but not me, not this time. In the past I have gained weight transiently with the steroids and fluids I have been given, but this time I’m getting almost no steroids, and far less in terms of fluid infusions with the drugs. I always watch my weight and normally weigh myself every day to make sure I’m doing okay, and usually I can keep my weight between about 176 and about 179 or so. I was at about my normal 178 when I started the chemotherapy. But as of this morning I was up to 184. It’s not the drugs, I’m pretty sure, it’s just that I’m eating too much.
You see, usually I can control my diet pretty well, and restrict myself when my weight is creeping up. But now I find that I have a voice inside that is always giving me excuses to eat a little more than I need. I think this voice is related to my Id, but is much more seductive, perhaps being my Id’s sexy little cousin or something. When my Id says I should eat more, it says, “Eat, dammit, eat!” But I can resist that voice easily and push away from the table and skip the piece of pie, or whatever. My Superego is usually in charge. But this voice I’m hearing now is much harder to ignore. If I see a piece of key lime pie, or pecan pie, or something I love (hot wings, smoked BBQ ribs, etc.), the voice, rather than demanding that I eat it, softly whispers to me, “You poor, poor thing, you have leukemia and you’re going through chemotherapy. Of COURSE you can have that pie. You can have whatEVER you want.” I, fool that I am, usually listen and eat up. I’ve got to find a way to block that voice or I’ll be at 200 pounds before I finish this regimen of chemotherapy. Who ever heard of gaining weight during chemotherapy?
Hey, I’ve had universal support for changing our Team In Training nickname from TNT to TIT…well, from at least a couple of folks. Anna, one of our walking coaches, says that she and Suzanne, another coach, have long thought that they’d get a fair amount of donations if they sponsored a TNT Mud Wrestling competition. She suggested that they’d probably attract more male participants or observers if they were in the TITs instead. Maybe that should be the Mud Wrestling CompeTITion! She’s probably right. You know, you have TNT versus TIT. Well, guys like to blow things up, and so TNT is attractive, I suppose. But, “BOOM” and it’s all over, nothing else to look at. But other things have more lasting, universal appeal to guys…. On a related topic, Meg, another team member, said I probably used the wrong people as examples of who might sign up for the wet T-shirt contests. She said she didn’t think Laura and Kelly together could fill out even one wet T-shirt, much less two (you know how runners are built, right?). Now, I never, ever would have suggested such a thing! I never even notice these kinds of issues. Really! No, I mean it…really (smirk)! But I suppose that even as I write these words, the folks up at corporate are redesigning our logos using concentric circles and conical shaped devices to draw attention to our new nurturing image.
On another TNT (TIT??) related note, you guys have no doubt noticed my frequent references to Lou and Joan, our long-time friends from Colorado who have, on a regular, pretty much daily basis, been sending me friendship and get well cards. Well, they also donate to the Leukemia and Lymphoma Society, and recently received an invitation to join a TNT team in the Denver area. They’re likely going to join up soon and do a walking marathon in Denver next October. I want all my TNT teammates to give them a big cheer, okay?
Kelly (who hasn’t as of yet officially signed up for the wet T-shirt contest but assured me that she would) wrote to comment on Tom’s suggestion that I should perhaps get a massage because of all my body aches. She said, “Yes, maybe a massage would be good for you. Although, according to your account, having to shed clothing was a startling and horrifying experience for you. Sweet revenge for all of us ladies who have ever laid on atable in the doc's office as he says "scoot down a little more...." Maybe the massage wouldn't be so relaxing for you!” (See September 1, 2004 entry of my story). Well, you know, it really wasn’t especially relaxing, because I wasn’t absolutely, completely sure what was going on and didn’t expect to have to get totally nekkid in front of a stranger, in a motel room, fer cryin’ out loud! Why should I have to get nekkid when all that hurt was my neck and back! And I wasn’t entirely sure what Martina was up to. I half expected her to grab for Mr. Happy and was nervous just thinking about that possibility. If she had, I couldn’t very well scream and run out of the room and into the hallway completely undressed, could I? “Sweet revenge” indeed! Every woman who has heard this story, including many of my former patients, has been beside herself with laughter at how uncomfortable I was, including my wife and my daughter. That’s just pure schadenfreud and you all should be really, really ashamed of yourselves at having such a good time at my timidity (is that a word?). Actually, it’s just that I’m extremely shy. Yeah, that’s it.
I probably managed to irritate both the Coloradans and the Texans with my last little bit about climate intolerance (and the Montanans, too, I suppose). Regarding Texans’ general intolerance to cold, and the similar intolerance to heat by Coloradans, my brother Dan, who lives in nearby Grapevine, Texas, wrote in to suggest it’s basically just what you’ve become accustomed to, and that cold in the fall feels worse because you’re used to the heat. And heat in the spring feels correspondingly hotter because you’re used to the cold. But I just think that we have fundamentally changed the way we acclimate to the weather in recent decades. It used to be that, for millennia, we as a species adapted to the climate. But now we adapt the climate to us. We feel the need to have a bubble of air around us that is a constant 75 degrees, or whatever, whether we’re in our car, home, at the theater, office or just about anywhere. And we use prodigious amounts of natural resources to accomplish that goal. I think the Europeans are much more conservative in the use of heating and cooling than we are. Few homes, hospitals, stores or cars are air conditioned over there, and it does reach 100 degrees from time to time, with high humidity. In Europe you just deal with it! And in the winter, the heat doesn’t come on until some arbitrary date in late October, no matter what the temperatures outside are. People just put on sweaters and go about their business. No one is ever going to mistake me for a “greenie” or a tree-hugger, but I do believe in trying to minimize consumption of resources (but just when it suits me, I guess, since I don’t drive a Honda Fit or a Prius). In the winter, we have our thermostat at 70 degrees during the day with a set back to 55 degrees at night (and did so in Colorado, too). But then there’s my brother Doug in South Carolina. He keeps his thermostat at 60 degrees all winter long. But the really tough, conservation minded folks are our neighbors, Bonnie and Quinn. I don’t think they even turn on their furnace until the outside temperature is below freezing. Or unless they’re having company. I remember an e-mail I got from Bonnie last winter and she said the indoor temperature in their home was, I believe, 43 degrees! But now I’ll get off my conservation soap box.
This last week has been a pretty good one for Kathy and me. I’ve felt better and we have been able to get out some, though we still avoid crowds. The flu is still officially present, though I haven’t heard on even one person who actually has had it. But we’ve been able to get out to an occasional restaurant (where “the voice” always encourages me to ingest far too many calories). Generally we try to go out during the off hours when places aren’t very crowded. We’ve also made it to a few stores for just a little bit of shopping. But yesterday, we got out and made a short daytrip up to a nearby lake and had a great afternoon just being outside. We played a couple of card games and just enjoyed the beautiful spring weather with temperatures in the mid-60s. It was so nice to be outside, because we know that as of next week, starting tomorrow, we’ll be trapped in the house again for a couple of weeks.
And I think I’ve rambled on long enough for now. I’ll close this and get it in the mail. Thanks for all your “fan mail” that I’ve gotten. I always enjoy your feedback. Until next time….
Dave
dreck@prodigy.net
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