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
Monday, June 2, 2008
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
Sunday, March 30, 2008
Feelin' A Little Low
Dave’s Great Adventure, Book Three
Chapter 2, Verse 2
March 30, 2008
Feelin’ A Little Low
Man, I had a dickens of a time with the last letter, trying to decide how to start out my story about how this is the best regimen I’ve been on but which has the worst side effects so far. And I barely touched on the tale of the two cities which are managing my care, with Houston pulling the strings with Denton trying to do as they’re told at long distance, but this message will be a lot easier to start out. Every thing is low. Well, not quite everything.
Last Monday I went back in to get another blood count done. I wasn’t surprised to find that the total white blood cell count was only 1,100. That included about only 400 neutrophils (the good guys), a couple hundred lymphocytes (potential bad guys), and 400 monocytes (monocytes are white blood cells which circulate in the blood until they find a foreign invader, like a splinter or bacteria or something, at which time they migrate out of the blood and into the tissues and become the macrophages you may have read about in biology, which destroy foreign stuff). There was also a scattering of a few other normal cells called basophils and eosinophils, but usually they’re in such low concentrations they don’t even matter.
What surprised me, however, was that even with these low counts, I wasn’t started back on the Neupogen to boost my neutrophil counts. My white cell counts (which reflect the state of my immune system) after only two cycles of the new regimen, are almost exactly the same as my counts were back in 2002 after four cycles of FCR, and those low counts, as I’ve related earlier, led my doc to stop the infusions. “We’re just beating the crap out of your stem cells now,” he said back then. I really thought we’d start the Neupogen again to get me ready for the next cycle, but that’s not yet the plan. I suppose (I hope) we will start it up again after my blood count on Monday. My next cycle of chemotherapy is supposed to start on April 6th.
What also surprises me is that I really haven’t gotten sick. It seems that with my immune system so weakened, and with my body crawling with microbes, I should be getting a sore throat or a cold or pneumonia, or something. So far the worst that’s happened is that a chronic sinus problem is trying to flare up and so I’m taking a short course of antibiotics to suppress it. But that’s all. We have been very careful to avoid crowds and haven’t been to church, concerts or plays for a few months now, but even so, you’d think I would have to pick up something from time to time. But so far, so good.
The chemotherapy is designed to attack primarily white cells, but I have also mentioned that the Cytoxan is more of a “bombs away” type of agent. It destroys about anything it comes across. So, the drugs affect my other blood cell counts as well. Other than my white cells, what’s been most affected incident to the chemotherapy are my platelets, the cells that are active in causing blood to clot. Most folks have about 200,000 to 400,000 of these cells (per milliliter of blood) but my counts have been dropping down to the 150,000 range and below ever since my first chemotherapy back in 2002. But as of last week they were down to 60,000. Now, that’s pretty low, but fortunately blood clots pretty well as long as you have at least 20,000 or so of normal platelets circulating. My red cell counts have been slowly dropping too, but are nowhere near critical. My hematocrit, a measure of the number of red cells in your blood, was always about 48% when we lived in Denver. Normal is about 36% to about 45% or so. My 48% was a little high, but that’s because I lived in Denver, at a mile high, and when you live where the air is thin, you make more red cells. Also, being a man, I don’t lose blood each month like most women do, and so men typically have a higher hematocrit than women. My hematocrit has dropped to 36% now, the lowest it’s ever been, but it’s not at all worrisome. It just seems to be showing a slow downward trend. I expect it to rebound nicely after we finish up with the chemotherapy.
The reason that all my cells are affected is that all of them, the neutrophils, lymphocytes, red cells, platelets, etc., all come from the same population of stem cells. The stem cells magically grow, divide and make whatever cells we need unless they are affected by outside forces, like leukemia or chemotherapy. Since I have both issues, it’s little wonder that my cell counts are skewed. That’s probably enough detail for Steve, so I’ll stop with the technical stuff for now.
The aches and pains I mentioned in my last letter have slowly diminished, but haven’t totally gone away. I don’t have the headaches or general body pains anymore, but many of my joints still hurt when I stress them, just by moving them in some cases, more often by putting pressure on them. I’m finally to the point that it doesn’t hurt too much to roll over in bed. It makes it hard to get much sleep when every movement at night hurts. I hope the Avastin works if it’s going to put me through these body pains at each cycle.
By an unhappy coincidence, the husband of one of our TNT coaches is also taking Avastin now. He has a basal cell carcinoma; you know, the little ditzels that many of us have had frozen off our skin at some point. Except that his basal cell skin cancer has spread to his lungs, which is an extremely rare occurrence. Only about 300 similar cases have ever been reported, so treatment options are not well documented with this rare condition. Anyway, Larry has been given one round of Avastin with another drug and so far he has had few of the body aches and pains that I’ve experienced. So I wonder if it’s really the Avastin causing the body aches, or the Avastin in combination with all the other powerful toxins I’m getting (which did not cause me pain in the past) or if it’s maybe the fact that I’m not flushing the stuff out by taking in large quantities of fluids like I did in the past. At any rate, we have decided to take the advice of our friend Kathy in Atlanta, and do the “consume mass quantities” of fluids during and after the next round of infusions. I’ll be drinking lots of water, ginger ale and tea for the three days of the infusions next month in hopes of reducing the side effects. We’ll see if it works.
Speaking of TNT, you know, really, TNT isn’t the acronym, or even the initials of Team In Training, is it? It should be TIT, right? Man, we’re missing out on a great marketing tool by not using the correct acronym. Think of the interesting logos we could have in our advertising. Think of all the guys who would join up just out of curiosity about what the TITs were all about. I’ll bet we could sign up Hooters and Bone Daddy’s Restaurants as corporate sponsors (For those of you not in Texas, Bone Daddy’s is a great chain of BBQ restaurants. It also happens to employ very healthy young ladies who wear hot pants and tight tank tops.) and I’ll bet that many of the gentlemen’s clubs in Dallas would sign up as well. You know, we could even eliminate those long, hot, sweaty marathons and have wet T-shirt contests instead. They’d be easier to train for and might bring in bigger crowds! Of course, we’d have to be highly selective in who we entered in those contests, because not many folks would pay to see me or Martin in a wet T-shirt, but I’ll bet Laura and Kelly would volunteer, don’t you? Actually, after lots of training runs I’ve seen Martin in a wet shirt. Not a pretty sight. But I really think we need to run this idea past the suits at corporate, don’t you? Just a thought.
I heard from several folks about Texans and snow. Sounds like Texans deal with it a lot like the folks in South Carolina. My brother Doug said this: “One rogue snowflake starts terrorizing the countryside and they hit the grocery stores, buying out all the milk and bread and toilet paper, enough to last until the spring thaw.” On TV interviews I’ve heard folks here say essentially that. People get accosted in store parking lots by the ever-present and ever-obtrusive reporters who are desperately looking for something on which to report, so they stalk folks at exits from grocery stores and Blockbuster shops, coaxing “statements” out of them. But I have heard people say that, yes, they were stocking up on bottled water, chips and DVDs to ride out the “storm” when snow was approaching.
I’m a “restored” Texan, having moved back to the state I grew up in after twelve years on the frozen tundra that is Denver. I remember blanching at hearing that the temperatures there got down into the single digits or below on a regular basis in the winters. Can people really survive in those temperatures, I wondered? All I knew of Denver weather was what I saw on weather reports, and of course those weather reports only showed Denver when there was a lot of snow. I thought it was cold up there all year long! But it’s not, and yes, people can survive and do very nicely in those single digit temperatures.
And I now remember that there is a different definition of “cold” here than there is in Denver. Around here, when it gets into the 50s, or even 60s sometimes, many folks bundle up in coats and knit caps. A couple of days ago I was leaving the community and the car indicated that the temperature was 64 degrees. Some of the workers out here were wearing their parkas with the hoods up! Parkas!
In Boulder, near Denver, there is an annual “Polar Bear Plunge.” It happens, I believe, on New Year’s Day, and a bunch of truly insane folks go to the reservoir, break a hole in the ice, and they voluntarily jump in the water. Well, we too have a “Polar Bear Plunge” in our community here in Denton. It happens in the community swimming pool in April. The last time they held it there was a statement to the effect that, “Cool temperatures in the low 80s kept many participants out of the water.” Are you kidding me? What kind of “Polar Bear” can’t stand temps in the 80s! A “Wussie” Bear?
And you’d think that if Texans can’t stand the cold, they should at least be able to stand the heat. But no. If the temperature is over about 75, most cars have their air conditioning going. And on a regular basis you can see folks sitting in store parking lots, running their engines with the AC on for thirty minutes to an hour while their spouse is inside shopping. It drives me nuts to see this, with them wasting gasoline and adding to the horrible air we have around here, instead of just rolling down their windows.
But, hey, the Denver folks are just as bad about heat. They think anything over about 75 or 80 is “hot.” Just as Coloradans snicker at Texans about the low tolerance to cold, Kathy and I snickered every time we heard the weatherman in Denver talk about the “scorching” temperatures in the 90s. That’s just another summer day in Texas. When we moved to Denver we came from El Paso where it was over 110 for days on end. The air is extremely dry in Denver, with the humidity often in single digits so the temperatures in the 90s are easy to tolerate because it’s so dry. At least I thought so. In Colorado they keep track of the summer days that reach 90 or more. Heck, here in Texas we don’t keep track until the temperatures get over a hundred! If the temps ever reached 100 in Denver, well then, they get the reporters out doing “man in the street” interviews about how folks manage to get along when it’s so hot.
My sister-in-law Sharon, up in Montana, wrote to correct me for joking about Montanans having the AC on in their homes when the temps were above 60. Seems most homes up there don’t even have AC. But, she said, they do run the AC in their cars when it’s over 70. She’s sort of joking, but not really. Her husband Ray wrote to me a few years ago to confess that he found himself running the car AC when it was about 70 outside, and mused that it was so different from what I do, because I don’t typically turn on the AC in the car until it gets to about 90 or thereabouts. It’s just that I’m a miser and running the car AC, under most circumstances, costs about 10% of your fuel economy. So using it a lot makes your $3.00 gas really cost $3.30 or so. In any case, the folks in Montana are only marginally worse than Coloradans in heat intolerance, and they’re followed closely by us Texans. I guess it’s just a matter of what climate you’re accustomed to.
My brother Doug also wrote in and clarified that to him, the “D” in PDQ definitely stood for “damned.” At least when he uses it. He apparently uses this somewhat archaic term on a regular basis in his work at Winthrop University in Rock Hill, SC. Everybody knows kinda what it means, but many folks don’t know the precise definition. Debbie, my great friend and the wonderful nurse who kept me on schedule for years when I was working up in Denver, wrote to thank me for defining PDQ. She said that when she was growing up, her mom used the term regularly. She used to hear, "You kids better get this mess cleaned up PDQ, your father will be home in a few minutes...." Instinctively she knew it meant to get things done in a hurry, but didn’t know what it stood for (she is unashamedly a blond!) until I clarified things for her.
Our good friend and former neighbor, Tom, checked in with this: “Sorry to hear about the aches and pains, but I recall you are familiar with a masseuse and maybe you need to give her a call....” As a matter of fact, I think I still have Veronica’s number.
And of course, we get cards and e-cards from Lou and Joan just about every day. Thanks, guys. And Happy Birthday, Joan.
That’s probably plenty for now. I’ll check in again when I know what my white cell counts are and what the plan is leading up to my next round of drugs. Bye for now.
Dave
dreck@prodigy.net
Chapter 2, Verse 2
March 30, 2008
Feelin’ A Little Low
Man, I had a dickens of a time with the last letter, trying to decide how to start out my story about how this is the best regimen I’ve been on but which has the worst side effects so far. And I barely touched on the tale of the two cities which are managing my care, with Houston pulling the strings with Denton trying to do as they’re told at long distance, but this message will be a lot easier to start out. Every thing is low. Well, not quite everything.
Last Monday I went back in to get another blood count done. I wasn’t surprised to find that the total white blood cell count was only 1,100. That included about only 400 neutrophils (the good guys), a couple hundred lymphocytes (potential bad guys), and 400 monocytes (monocytes are white blood cells which circulate in the blood until they find a foreign invader, like a splinter or bacteria or something, at which time they migrate out of the blood and into the tissues and become the macrophages you may have read about in biology, which destroy foreign stuff). There was also a scattering of a few other normal cells called basophils and eosinophils, but usually they’re in such low concentrations they don’t even matter.
What surprised me, however, was that even with these low counts, I wasn’t started back on the Neupogen to boost my neutrophil counts. My white cell counts (which reflect the state of my immune system) after only two cycles of the new regimen, are almost exactly the same as my counts were back in 2002 after four cycles of FCR, and those low counts, as I’ve related earlier, led my doc to stop the infusions. “We’re just beating the crap out of your stem cells now,” he said back then. I really thought we’d start the Neupogen again to get me ready for the next cycle, but that’s not yet the plan. I suppose (I hope) we will start it up again after my blood count on Monday. My next cycle of chemotherapy is supposed to start on April 6th.
What also surprises me is that I really haven’t gotten sick. It seems that with my immune system so weakened, and with my body crawling with microbes, I should be getting a sore throat or a cold or pneumonia, or something. So far the worst that’s happened is that a chronic sinus problem is trying to flare up and so I’m taking a short course of antibiotics to suppress it. But that’s all. We have been very careful to avoid crowds and haven’t been to church, concerts or plays for a few months now, but even so, you’d think I would have to pick up something from time to time. But so far, so good.
The chemotherapy is designed to attack primarily white cells, but I have also mentioned that the Cytoxan is more of a “bombs away” type of agent. It destroys about anything it comes across. So, the drugs affect my other blood cell counts as well. Other than my white cells, what’s been most affected incident to the chemotherapy are my platelets, the cells that are active in causing blood to clot. Most folks have about 200,000 to 400,000 of these cells (per milliliter of blood) but my counts have been dropping down to the 150,000 range and below ever since my first chemotherapy back in 2002. But as of last week they were down to 60,000. Now, that’s pretty low, but fortunately blood clots pretty well as long as you have at least 20,000 or so of normal platelets circulating. My red cell counts have been slowly dropping too, but are nowhere near critical. My hematocrit, a measure of the number of red cells in your blood, was always about 48% when we lived in Denver. Normal is about 36% to about 45% or so. My 48% was a little high, but that’s because I lived in Denver, at a mile high, and when you live where the air is thin, you make more red cells. Also, being a man, I don’t lose blood each month like most women do, and so men typically have a higher hematocrit than women. My hematocrit has dropped to 36% now, the lowest it’s ever been, but it’s not at all worrisome. It just seems to be showing a slow downward trend. I expect it to rebound nicely after we finish up with the chemotherapy.
The reason that all my cells are affected is that all of them, the neutrophils, lymphocytes, red cells, platelets, etc., all come from the same population of stem cells. The stem cells magically grow, divide and make whatever cells we need unless they are affected by outside forces, like leukemia or chemotherapy. Since I have both issues, it’s little wonder that my cell counts are skewed. That’s probably enough detail for Steve, so I’ll stop with the technical stuff for now.
The aches and pains I mentioned in my last letter have slowly diminished, but haven’t totally gone away. I don’t have the headaches or general body pains anymore, but many of my joints still hurt when I stress them, just by moving them in some cases, more often by putting pressure on them. I’m finally to the point that it doesn’t hurt too much to roll over in bed. It makes it hard to get much sleep when every movement at night hurts. I hope the Avastin works if it’s going to put me through these body pains at each cycle.
By an unhappy coincidence, the husband of one of our TNT coaches is also taking Avastin now. He has a basal cell carcinoma; you know, the little ditzels that many of us have had frozen off our skin at some point. Except that his basal cell skin cancer has spread to his lungs, which is an extremely rare occurrence. Only about 300 similar cases have ever been reported, so treatment options are not well documented with this rare condition. Anyway, Larry has been given one round of Avastin with another drug and so far he has had few of the body aches and pains that I’ve experienced. So I wonder if it’s really the Avastin causing the body aches, or the Avastin in combination with all the other powerful toxins I’m getting (which did not cause me pain in the past) or if it’s maybe the fact that I’m not flushing the stuff out by taking in large quantities of fluids like I did in the past. At any rate, we have decided to take the advice of our friend Kathy in Atlanta, and do the “consume mass quantities” of fluids during and after the next round of infusions. I’ll be drinking lots of water, ginger ale and tea for the three days of the infusions next month in hopes of reducing the side effects. We’ll see if it works.
Speaking of TNT, you know, really, TNT isn’t the acronym, or even the initials of Team In Training, is it? It should be TIT, right? Man, we’re missing out on a great marketing tool by not using the correct acronym. Think of the interesting logos we could have in our advertising. Think of all the guys who would join up just out of curiosity about what the TITs were all about. I’ll bet we could sign up Hooters and Bone Daddy’s Restaurants as corporate sponsors (For those of you not in Texas, Bone Daddy’s is a great chain of BBQ restaurants. It also happens to employ very healthy young ladies who wear hot pants and tight tank tops.) and I’ll bet that many of the gentlemen’s clubs in Dallas would sign up as well. You know, we could even eliminate those long, hot, sweaty marathons and have wet T-shirt contests instead. They’d be easier to train for and might bring in bigger crowds! Of course, we’d have to be highly selective in who we entered in those contests, because not many folks would pay to see me or Martin in a wet T-shirt, but I’ll bet Laura and Kelly would volunteer, don’t you? Actually, after lots of training runs I’ve seen Martin in a wet shirt. Not a pretty sight. But I really think we need to run this idea past the suits at corporate, don’t you? Just a thought.
I heard from several folks about Texans and snow. Sounds like Texans deal with it a lot like the folks in South Carolina. My brother Doug said this: “One rogue snowflake starts terrorizing the countryside and they hit the grocery stores, buying out all the milk and bread and toilet paper, enough to last until the spring thaw.” On TV interviews I’ve heard folks here say essentially that. People get accosted in store parking lots by the ever-present and ever-obtrusive reporters who are desperately looking for something on which to report, so they stalk folks at exits from grocery stores and Blockbuster shops, coaxing “statements” out of them. But I have heard people say that, yes, they were stocking up on bottled water, chips and DVDs to ride out the “storm” when snow was approaching.
I’m a “restored” Texan, having moved back to the state I grew up in after twelve years on the frozen tundra that is Denver. I remember blanching at hearing that the temperatures there got down into the single digits or below on a regular basis in the winters. Can people really survive in those temperatures, I wondered? All I knew of Denver weather was what I saw on weather reports, and of course those weather reports only showed Denver when there was a lot of snow. I thought it was cold up there all year long! But it’s not, and yes, people can survive and do very nicely in those single digit temperatures.
And I now remember that there is a different definition of “cold” here than there is in Denver. Around here, when it gets into the 50s, or even 60s sometimes, many folks bundle up in coats and knit caps. A couple of days ago I was leaving the community and the car indicated that the temperature was 64 degrees. Some of the workers out here were wearing their parkas with the hoods up! Parkas!
In Boulder, near Denver, there is an annual “Polar Bear Plunge.” It happens, I believe, on New Year’s Day, and a bunch of truly insane folks go to the reservoir, break a hole in the ice, and they voluntarily jump in the water. Well, we too have a “Polar Bear Plunge” in our community here in Denton. It happens in the community swimming pool in April. The last time they held it there was a statement to the effect that, “Cool temperatures in the low 80s kept many participants out of the water.” Are you kidding me? What kind of “Polar Bear” can’t stand temps in the 80s! A “Wussie” Bear?
And you’d think that if Texans can’t stand the cold, they should at least be able to stand the heat. But no. If the temperature is over about 75, most cars have their air conditioning going. And on a regular basis you can see folks sitting in store parking lots, running their engines with the AC on for thirty minutes to an hour while their spouse is inside shopping. It drives me nuts to see this, with them wasting gasoline and adding to the horrible air we have around here, instead of just rolling down their windows.
But, hey, the Denver folks are just as bad about heat. They think anything over about 75 or 80 is “hot.” Just as Coloradans snicker at Texans about the low tolerance to cold, Kathy and I snickered every time we heard the weatherman in Denver talk about the “scorching” temperatures in the 90s. That’s just another summer day in Texas. When we moved to Denver we came from El Paso where it was over 110 for days on end. The air is extremely dry in Denver, with the humidity often in single digits so the temperatures in the 90s are easy to tolerate because it’s so dry. At least I thought so. In Colorado they keep track of the summer days that reach 90 or more. Heck, here in Texas we don’t keep track until the temperatures get over a hundred! If the temps ever reached 100 in Denver, well then, they get the reporters out doing “man in the street” interviews about how folks manage to get along when it’s so hot.
My sister-in-law Sharon, up in Montana, wrote to correct me for joking about Montanans having the AC on in their homes when the temps were above 60. Seems most homes up there don’t even have AC. But, she said, they do run the AC in their cars when it’s over 70. She’s sort of joking, but not really. Her husband Ray wrote to me a few years ago to confess that he found himself running the car AC when it was about 70 outside, and mused that it was so different from what I do, because I don’t typically turn on the AC in the car until it gets to about 90 or thereabouts. It’s just that I’m a miser and running the car AC, under most circumstances, costs about 10% of your fuel economy. So using it a lot makes your $3.00 gas really cost $3.30 or so. In any case, the folks in Montana are only marginally worse than Coloradans in heat intolerance, and they’re followed closely by us Texans. I guess it’s just a matter of what climate you’re accustomed to.
My brother Doug also wrote in and clarified that to him, the “D” in PDQ definitely stood for “damned.” At least when he uses it. He apparently uses this somewhat archaic term on a regular basis in his work at Winthrop University in Rock Hill, SC. Everybody knows kinda what it means, but many folks don’t know the precise definition. Debbie, my great friend and the wonderful nurse who kept me on schedule for years when I was working up in Denver, wrote to thank me for defining PDQ. She said that when she was growing up, her mom used the term regularly. She used to hear, "You kids better get this mess cleaned up PDQ, your father will be home in a few minutes...." Instinctively she knew it meant to get things done in a hurry, but didn’t know what it stood for (she is unashamedly a blond!) until I clarified things for her.
Our good friend and former neighbor, Tom, checked in with this: “Sorry to hear about the aches and pains, but I recall you are familiar with a masseuse and maybe you need to give her a call....” As a matter of fact, I think I still have Veronica’s number.
And of course, we get cards and e-cards from Lou and Joan just about every day. Thanks, guys. And Happy Birthday, Joan.
That’s probably plenty for now. I’ll check in again when I know what my white cell counts are and what the plan is leading up to my next round of drugs. Bye for now.
Dave
dreck@prodigy.net
Friday, March 21, 2008
TOTAL--BODY--PAIN
Dave’s Great Adventure, Book Three
Chapter 2, Verse 1
March 21, 2008
TOTAL—BODY—PAIN
It was the best of times, it was the worst of times. It was a time…. No, no, I don’t think I can say that. I think someone has used those lines before, maybe the Beatles or somebody.
The seasons change, and for every season there is a purpose…. Oh man, that’s been used before too. Was it the Byrds? Yeah, I think so, but they ripped off that band Ecclesiastes for their lyrics, didn’t they?
Okay, the seasons changed here in Denton and now it’s spring.
Now, just writing that line I can hear my friends and kinfolk in Florida chuckling. For them it’s been spring every since last November when summer ended. That’s about all they have…summer, spring, summer, spring, with an occasional short season called “hurricane” when they get bored with good weather. And I know that our friends in Colorado have had some nice sunny days up in the 60s that tease them into thinking that spring is coming, but I know those guys still have a couple months of snow left. March and April are supposedly the snowiest months in Colorado. Hey, the last freeze up there isn’t until after Mother’s Day [memo to self: look for Mother’s Day cards soon]. And our relatives up in Montana can only dream of those sixty degree days. Heck, when it gets up to sixty or so, they turn on their conditioning. I exaggerate, perhaps, slightly.
Anyway, it’s spring here now. But it didn’t come easy. Last week we had SNOW here in north Texas. That’s a problem, and a curiosity, because snow and Texas don’t belong together in the same sentence. First, on Monday, about ten days ago, we had some snow flurries and the local news types were falling all over themselves running around town finding car windshields covered with snow so they could give us a live report. Even more absurdly, about six weeks previously one of the local stations sent a reporter about fifty miles out of town to give us a live report of snow flakes falling in the area of the small community of Rowlett. Nothing was sticking on the roads, or even on the grass, but there was frozen water floating down from above and it needed to be reported on.
But last week, we had SNOW. Or what passes for snow in Texas. We had a heavy, wet, slushy snowfall of about six inches in the Denton area, less as you went into Dallas. It piled up on the grass, and the roads got slushy but they were never snow-packed or frozen. But, if the reporters went nuts over snow flurries the previous Monday, what do you think they did with SNOW! Man, they broke into the national news to report the “winter storm.” We had live reports from slushy streets to watch the traffic, wondering if the cars could actually make it through the slush. They could. Very exciting stuff, that traffic.
Now, in north Texas, it doesn’t even take snow to bring the city to a halt. All it takes is the threat of snow. If flurries are predicted, restaurants and businesses sometimes close early, people change their plans and schools let the kids out a couple hours before the end of the day, and everybody rushes home to watch the weather reports. Probably like the folks in Florida do during the season called “hurricane.”
So you have to know already what happened last week when we had SNOW. Things closed down Thursday, and many, if not most places were closed or on a delayed schedule the next day, too, despite the fact that it was going to be bright and sunny. In fact, the next day was the day I was scheduled to take my B-17 flight and it went off just fine, demonstrating that the weather was a non-factor even for an antique bomber. But it was a factor in Denton. I was scheduled for a doctor’s appointment and some pre-chemotherapy lab tests at 9AM that same Friday. We got up early to go in and be there on time.
We were ready to leave at about 8:00, which was, of course, way early, but that’s the way I’ve been trained to be since I’ve been married. That’s when the phone rang. A clinic employee called from her home to tell us not to come in, that the clinic couldn’t open and that we should call back at about ten o’clock to see if they could reschedule me. Well, I had a bomber flight to catch and I couldn’t be waiting around to be rescheduled for that afternoon, or possibly even later, since I was supposed to start my therapy the following Monday. So instead of waiting around and calling back at ten, we just went on in at about 9:15! I figured it would be harder for them to put me off if I was at their door in person rather than being a voice on the phone.
The day was really very nice and bright. The temperatures were in the mid-forties or so, and the roads were mostly just wet. Traffic was flowing normally. When we arrived at the clinic we were surprised to find it not only open, but crowded with staff and patients. We signed in and in fact, got right in for the labs and my appointment, though we were late for both. The news was good. The Neupogen was working, my white count was up to about 16,000, mostly neutrophils, and we were on track for a Monday start of Round Two. So far, so good. We took off for Ft. Worth and my ride in the old bomber.
But “The Blizzard of ‘08” wasn’t finished causing problems for me. On Monday morning we went in, early of course, to start the drugs. We picked out an infusion recliner and waited, and waited. The drugs weren’t ready, the orders hadn’t been written, and mostly, the labs that we had drawn the Friday before, lab tests measuring my kidney functions which were critical to have before starting the drugs, weren’t back from the laboratory. Seems they went out late on Friday, couldn’t be done on Saturday, and the one person in Dallas, or whatever, who could run the tests, wouldn’t be in until after 11:00 on Monday! They finally sent us home with instructions to call back in a couple of hours to see if we could get things going, but it soon became obvious that the first infusion, which was going to take six to seven hours, wasn’t going to get done that day.
But we came back the next morning and everything went much better. The lab results were back and were normal, the drugs were ready and the staff was ready to plug me in. Off we went! The plan has now changed a bit. I had four days of drug infusions in Houston, but since I did well and had no complications or reactions, from now on I’ll have all the drugs given in just three days. That’s great, because the shorter the time I need to be tied down to the infusion room the better I like it. Still, the three days can be long, being seven, four and about three hours long each. But they went well and without complications.
This new regimen is probably the best I’ve had in many ways, if the goal is to kill off white cells, especially lymphocytes. As my brother Doug, out in South Carolina (where they’re finally getting the rain they’ve been wanting for a couple of years) said in a message, not too long ago, “Everything they give you seems to knock out your white cells pdq” (for you youngsters, that means “Pretty Damned/Darned Quick”). That’s been true in general, but it’s especially true now. I’ve mentioned how low my counts went just weeks after the very first round of drugs. My total count went from almost 90,000 to 2,400. So I had another blood count done just four days after we finished my second round of drugs and my count was already down to 1,600! The good news was that most of the remaining white cells this time were the neutrophils I need to keep me free from infections. I was amazed, however, to see that my lymphocyte count, which had been about 81,000 before we started all these drugs last month, was now down to 100. That’s one hundred…no typo there. And that was a week or two away from the nadir or low point, which we expect in the next ten days. That’s good, because that’s what the drugs are supposed to do, but I need SOME lymphocytes to make antibodies. I’m wondering how close the folks at MDA are going to let me get to the jaws of death before I am (hopefully) snatched back. As before…stay tuned, this really could get interesting.
But if this is the best drug regimen I’ve been on, it also is the worst of all the regimens I’ve tried in terms of how it makes me feel. In the past I’ve been tired, been fuzzy brained, lost hair, and all those things, but this new stuff hurts! It almost has to be the Avastin, because I’ve had all the other drugs before. After the first round I had horrible headaches and neck pains for a while. But after the second round, just about everything hurt. I had muscle pains, neck pains, back pain, chest pain, bone pain, joint pain, and especially head pain. Miserable, lousy, splitting headache pain. Those of you with migraines will appreciate what I’m speaking of. I went through a lot of pain meds and muscle relaxants that my doc had given me after I complained about the muscle spasms and headaches after the first cycle. They helped, but it took days to get past the “really bad pain” and into a state of “just some pain.” Even now, it hurts to clench my fist, lean on my wrist or elbow, or raise my arms. I hope this is a temporary thing. But if it’s not, I guess it’s the price of doing business with Mr. Leukemia.
Now I’m back to where I was a few weeks ago; feeling better enough to be bored by inactivity but entering my nadir time and unable to be around many folks. I will be incredibly interested to see where my white counts are when we go back into the clinic on Monday. I’m thinking they’ll be below 1,000 and I’ll be started back on the Neupogen. We still have about $2,400 worth of the stuff in the refrigerator next to the yogurt.
If one of the purposes of the change of seasons is to warm things up after the winter, then it serves to remind large mammals to start shedding excess hair. So, right on cue, I started losing hair from the first round of drugs. It took about three weeks, but a substantial amount of stray hair started showing up floating on the surface of the bathtub water. It’s really not a noticeable amount of hair loss yet, after just one round of drugs, but the other resident of our home says she can tell the difference as she runs her fingers through my tresses. If worse comes to worst, I’ll shave my head again and wear my “Wish You Were Hair” hat that Kathy got for me the last time I shaved it all off.
With my white counts being so low, I am, as I’ve too frequently mentioned, very susceptible to infection. One reason I haven’t yet gotten sick is that I’m taking a couple of drugs to try to keep me relatively healthy. I mentioned the Valtrex I’m taking a few weeks ago. I take it daily to minimize the risk of getting viral infections or reactivating old infections, like chicken pox and so forth. But I’m also taking Bactrim (also called Septra) on an odd schedule. This is a drug often used for bladder infections, bronchitis, etc. In my case, it’s being used to reduce my chances of getting pneumocystis carinii pneumonia, an infection most commonly seen in folks with HIV infections. Lots of folks have pneumocystis carinii in their bodies, but like many of the germs I mentioned a few weeks ago that commonly use our body as a home, it causes no problems in the presence of a normal immune system. Folks with compromised immune systems, like those on chemotherapy regimens, are at risk, however. So I take the Bactrim, one tablet twice daily on weekends. That seems to be all I need, though it’s a change from the way I took it in 2002, when I would take one tablet every Wednesday and Saturday.
I thought about asking my doc to reduce my dose of Zofran for this cycle, since it has the well-known ability to transform hamburgers into concrete within the body. But when I mentioned this he said, no, no, that Zofran caused diarrhea. Huh? I looked it up. Zofran can cause constipation or diarrhea. Now, I ask you, how can that be? How can one drug cause side effects which are polar opposites of each other. So I didn’t get my dose reduced and am paying the same price. Oh well. The price of doing business….
Say, Kelly (our Honored Hero co-captain) gave me an enthusiastic “thumbs up” for writing a book. She said my stuff compared very well to the Captain Underpants books she reads to her kids at bedtime. Uhh…should I leave out the stuff about massages and beavers if I do?
I heard from Bobbie again after my little story about the B-17 I flew in. I have mentioned that Bobbie was a feisty German gal. Well, in the early 1940s Bobbie was a young German citizen and she watched from Frankfurt, Germany as the B-17s flew overhead. Back then they were on business trips, not the pleasure cruise I took, and they were dropping tons and tons of bombs on the city. Frankfurt was devastated by the bombing. When I was stationed there in the early 1980s, during various construction projects they were still finding occasional bombs that had to be excavated and disarmed.
In closing this update let me tell you that I was happy to find that some of my mutual funds include Genentech, the maker of both the very expensive Rituxan and the even more expensive Avastin I am taking. You know what that means? It means that when you taxpayers out there are buying these drugs for me, you’re also boosting the value of my mutual funds! I’m sure my cousin/stepbrother Tom out in Florida will be even happier to hear about that!
And with that I’ll close this update. Hopefully Kathy and I will be able to see some of you in the DFW area in the next week or two as I return more to normal, presuming my white counts permit us to be out and about.
Dave
dreck@prodigy.net
Ecclesiastes 3:3 (Early description of chemotherapy)
“A time to kill, and a time to heal,
A time to tear down and a time to build up.”
Chapter 2, Verse 1
March 21, 2008
TOTAL—BODY—PAIN
It was the best of times, it was the worst of times. It was a time…. No, no, I don’t think I can say that. I think someone has used those lines before, maybe the Beatles or somebody.
The seasons change, and for every season there is a purpose…. Oh man, that’s been used before too. Was it the Byrds? Yeah, I think so, but they ripped off that band Ecclesiastes for their lyrics, didn’t they?
Okay, the seasons changed here in Denton and now it’s spring.
Now, just writing that line I can hear my friends and kinfolk in Florida chuckling. For them it’s been spring every since last November when summer ended. That’s about all they have…summer, spring, summer, spring, with an occasional short season called “hurricane” when they get bored with good weather. And I know that our friends in Colorado have had some nice sunny days up in the 60s that tease them into thinking that spring is coming, but I know those guys still have a couple months of snow left. March and April are supposedly the snowiest months in Colorado. Hey, the last freeze up there isn’t until after Mother’s Day [memo to self: look for Mother’s Day cards soon]. And our relatives up in Montana can only dream of those sixty degree days. Heck, when it gets up to sixty or so, they turn on their conditioning. I exaggerate, perhaps, slightly.
Anyway, it’s spring here now. But it didn’t come easy. Last week we had SNOW here in north Texas. That’s a problem, and a curiosity, because snow and Texas don’t belong together in the same sentence. First, on Monday, about ten days ago, we had some snow flurries and the local news types were falling all over themselves running around town finding car windshields covered with snow so they could give us a live report. Even more absurdly, about six weeks previously one of the local stations sent a reporter about fifty miles out of town to give us a live report of snow flakes falling in the area of the small community of Rowlett. Nothing was sticking on the roads, or even on the grass, but there was frozen water floating down from above and it needed to be reported on.
But last week, we had SNOW. Or what passes for snow in Texas. We had a heavy, wet, slushy snowfall of about six inches in the Denton area, less as you went into Dallas. It piled up on the grass, and the roads got slushy but they were never snow-packed or frozen. But, if the reporters went nuts over snow flurries the previous Monday, what do you think they did with SNOW! Man, they broke into the national news to report the “winter storm.” We had live reports from slushy streets to watch the traffic, wondering if the cars could actually make it through the slush. They could. Very exciting stuff, that traffic.
Now, in north Texas, it doesn’t even take snow to bring the city to a halt. All it takes is the threat of snow. If flurries are predicted, restaurants and businesses sometimes close early, people change their plans and schools let the kids out a couple hours before the end of the day, and everybody rushes home to watch the weather reports. Probably like the folks in Florida do during the season called “hurricane.”
So you have to know already what happened last week when we had SNOW. Things closed down Thursday, and many, if not most places were closed or on a delayed schedule the next day, too, despite the fact that it was going to be bright and sunny. In fact, the next day was the day I was scheduled to take my B-17 flight and it went off just fine, demonstrating that the weather was a non-factor even for an antique bomber. But it was a factor in Denton. I was scheduled for a doctor’s appointment and some pre-chemotherapy lab tests at 9AM that same Friday. We got up early to go in and be there on time.
We were ready to leave at about 8:00, which was, of course, way early, but that’s the way I’ve been trained to be since I’ve been married. That’s when the phone rang. A clinic employee called from her home to tell us not to come in, that the clinic couldn’t open and that we should call back at about ten o’clock to see if they could reschedule me. Well, I had a bomber flight to catch and I couldn’t be waiting around to be rescheduled for that afternoon, or possibly even later, since I was supposed to start my therapy the following Monday. So instead of waiting around and calling back at ten, we just went on in at about 9:15! I figured it would be harder for them to put me off if I was at their door in person rather than being a voice on the phone.
The day was really very nice and bright. The temperatures were in the mid-forties or so, and the roads were mostly just wet. Traffic was flowing normally. When we arrived at the clinic we were surprised to find it not only open, but crowded with staff and patients. We signed in and in fact, got right in for the labs and my appointment, though we were late for both. The news was good. The Neupogen was working, my white count was up to about 16,000, mostly neutrophils, and we were on track for a Monday start of Round Two. So far, so good. We took off for Ft. Worth and my ride in the old bomber.
But “The Blizzard of ‘08” wasn’t finished causing problems for me. On Monday morning we went in, early of course, to start the drugs. We picked out an infusion recliner and waited, and waited. The drugs weren’t ready, the orders hadn’t been written, and mostly, the labs that we had drawn the Friday before, lab tests measuring my kidney functions which were critical to have before starting the drugs, weren’t back from the laboratory. Seems they went out late on Friday, couldn’t be done on Saturday, and the one person in Dallas, or whatever, who could run the tests, wouldn’t be in until after 11:00 on Monday! They finally sent us home with instructions to call back in a couple of hours to see if we could get things going, but it soon became obvious that the first infusion, which was going to take six to seven hours, wasn’t going to get done that day.
But we came back the next morning and everything went much better. The lab results were back and were normal, the drugs were ready and the staff was ready to plug me in. Off we went! The plan has now changed a bit. I had four days of drug infusions in Houston, but since I did well and had no complications or reactions, from now on I’ll have all the drugs given in just three days. That’s great, because the shorter the time I need to be tied down to the infusion room the better I like it. Still, the three days can be long, being seven, four and about three hours long each. But they went well and without complications.
This new regimen is probably the best I’ve had in many ways, if the goal is to kill off white cells, especially lymphocytes. As my brother Doug, out in South Carolina (where they’re finally getting the rain they’ve been wanting for a couple of years) said in a message, not too long ago, “Everything they give you seems to knock out your white cells pdq” (for you youngsters, that means “Pretty Damned/Darned Quick”). That’s been true in general, but it’s especially true now. I’ve mentioned how low my counts went just weeks after the very first round of drugs. My total count went from almost 90,000 to 2,400. So I had another blood count done just four days after we finished my second round of drugs and my count was already down to 1,600! The good news was that most of the remaining white cells this time were the neutrophils I need to keep me free from infections. I was amazed, however, to see that my lymphocyte count, which had been about 81,000 before we started all these drugs last month, was now down to 100. That’s one hundred…no typo there. And that was a week or two away from the nadir or low point, which we expect in the next ten days. That’s good, because that’s what the drugs are supposed to do, but I need SOME lymphocytes to make antibodies. I’m wondering how close the folks at MDA are going to let me get to the jaws of death before I am (hopefully) snatched back. As before…stay tuned, this really could get interesting.
But if this is the best drug regimen I’ve been on, it also is the worst of all the regimens I’ve tried in terms of how it makes me feel. In the past I’ve been tired, been fuzzy brained, lost hair, and all those things, but this new stuff hurts! It almost has to be the Avastin, because I’ve had all the other drugs before. After the first round I had horrible headaches and neck pains for a while. But after the second round, just about everything hurt. I had muscle pains, neck pains, back pain, chest pain, bone pain, joint pain, and especially head pain. Miserable, lousy, splitting headache pain. Those of you with migraines will appreciate what I’m speaking of. I went through a lot of pain meds and muscle relaxants that my doc had given me after I complained about the muscle spasms and headaches after the first cycle. They helped, but it took days to get past the “really bad pain” and into a state of “just some pain.” Even now, it hurts to clench my fist, lean on my wrist or elbow, or raise my arms. I hope this is a temporary thing. But if it’s not, I guess it’s the price of doing business with Mr. Leukemia.
Now I’m back to where I was a few weeks ago; feeling better enough to be bored by inactivity but entering my nadir time and unable to be around many folks. I will be incredibly interested to see where my white counts are when we go back into the clinic on Monday. I’m thinking they’ll be below 1,000 and I’ll be started back on the Neupogen. We still have about $2,400 worth of the stuff in the refrigerator next to the yogurt.
If one of the purposes of the change of seasons is to warm things up after the winter, then it serves to remind large mammals to start shedding excess hair. So, right on cue, I started losing hair from the first round of drugs. It took about three weeks, but a substantial amount of stray hair started showing up floating on the surface of the bathtub water. It’s really not a noticeable amount of hair loss yet, after just one round of drugs, but the other resident of our home says she can tell the difference as she runs her fingers through my tresses. If worse comes to worst, I’ll shave my head again and wear my “Wish You Were Hair” hat that Kathy got for me the last time I shaved it all off.
With my white counts being so low, I am, as I’ve too frequently mentioned, very susceptible to infection. One reason I haven’t yet gotten sick is that I’m taking a couple of drugs to try to keep me relatively healthy. I mentioned the Valtrex I’m taking a few weeks ago. I take it daily to minimize the risk of getting viral infections or reactivating old infections, like chicken pox and so forth. But I’m also taking Bactrim (also called Septra) on an odd schedule. This is a drug often used for bladder infections, bronchitis, etc. In my case, it’s being used to reduce my chances of getting pneumocystis carinii pneumonia, an infection most commonly seen in folks with HIV infections. Lots of folks have pneumocystis carinii in their bodies, but like many of the germs I mentioned a few weeks ago that commonly use our body as a home, it causes no problems in the presence of a normal immune system. Folks with compromised immune systems, like those on chemotherapy regimens, are at risk, however. So I take the Bactrim, one tablet twice daily on weekends. That seems to be all I need, though it’s a change from the way I took it in 2002, when I would take one tablet every Wednesday and Saturday.
I thought about asking my doc to reduce my dose of Zofran for this cycle, since it has the well-known ability to transform hamburgers into concrete within the body. But when I mentioned this he said, no, no, that Zofran caused diarrhea. Huh? I looked it up. Zofran can cause constipation or diarrhea. Now, I ask you, how can that be? How can one drug cause side effects which are polar opposites of each other. So I didn’t get my dose reduced and am paying the same price. Oh well. The price of doing business….
Say, Kelly (our Honored Hero co-captain) gave me an enthusiastic “thumbs up” for writing a book. She said my stuff compared very well to the Captain Underpants books she reads to her kids at bedtime. Uhh…should I leave out the stuff about massages and beavers if I do?
I heard from Bobbie again after my little story about the B-17 I flew in. I have mentioned that Bobbie was a feisty German gal. Well, in the early 1940s Bobbie was a young German citizen and she watched from Frankfurt, Germany as the B-17s flew overhead. Back then they were on business trips, not the pleasure cruise I took, and they were dropping tons and tons of bombs on the city. Frankfurt was devastated by the bombing. When I was stationed there in the early 1980s, during various construction projects they were still finding occasional bombs that had to be excavated and disarmed.
In closing this update let me tell you that I was happy to find that some of my mutual funds include Genentech, the maker of both the very expensive Rituxan and the even more expensive Avastin I am taking. You know what that means? It means that when you taxpayers out there are buying these drugs for me, you’re also boosting the value of my mutual funds! I’m sure my cousin/stepbrother Tom out in Florida will be even happier to hear about that!
And with that I’ll close this update. Hopefully Kathy and I will be able to see some of you in the DFW area in the next week or two as I return more to normal, presuming my white counts permit us to be out and about.
Dave
dreck@prodigy.net
Ecclesiastes 3:3 (Early description of chemotherapy)
“A time to kill, and a time to heal,
A time to tear down and a time to build up.”
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