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.
Sunday, April 13, 2008
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.”
Sunday, March 9, 2008
Survivors
Dave’s Great Adventure, Book Three
Chapter 1, Verse 8
March 9, 2008
Survivors
Over 12,000 B-17s were built before and during World War II and this aircraft was instrumental in the American war efforts in Europe. It flew higher and farther than most other aircraft of its type and flew strategic missions to places that were heavily protected and very dangerous for the Allied air crews, like oil refineries, munitions factories and railroad facilities. For most of the war it also flew farther than its fighter escorts could, and so was heavily armed with a dozen or more fifty-caliber machine guns so its crew could defend themselves against the enemy fighters sent against them. For this reason it was called the Flying Fortress.
But the B-17 wasn’t invincible. Over 4000 of them were lost in combat with the loss of over 45,000 crewmen. They were flown in huge flights of up to a few hundred planes, towards target areas known to be defended by antiaircraft artillery and fighters, and these large gatherings of aircraft, sometimes called “aluminum overcast” (as one surviving B-17 is called), were easy targets. Missions over defended areas of Europe frequently resulted in losses of ten to fifteen percent or more of the bombers.
Though the loss rates were often very high, the B-17 gained an almost mythic reputation as a survivor, a plane that could take horrendous damage but still manage to get home safely. There are many, many stories of badly damaged B-17s, some missing the entire nose, some missing parts of wings or tails, or with large holes in the sides of the fuselage, coming in for landings back at their bases in England or Italy. One plane was so badly damaged that the other airmen in the formation declared that they had seen it destroyed, only to see it show up, late and heavily damaged, at its home base in England. One of this plane’s crewmen said, “The plane can be cut and slashed almost to pieces by enemy fire and bring its crew home.”
I had signed up for a flight on “Nine-O-Nine,” a restored B-17 named for a famous B-17 which had gone through 140 missions without being damaged or aborting its mission. It was flying out of Alliance Airport in Ft. Worth, as part of the Wings of Freedom tour of three historic World War II aircraft, also including a B-24 and a B-25. These planes are survivors too, this B-17 being only one of about fourteen of the original 12,700 B-17s manufactured that still are in flyable condition. I was going to be flying on a plane that is older than I am. A mobile, flyable piece of history.
While we were at the airport, watching the planes come in for their landings, we stood near a woman about our age, who was watching intently. We talked to her and asked if she, too, was taking a flight. She wasn’t but was very interested in the B-24 “Liberator” bomber that was coming in. Her dad had been a bombardier on a B-24 during World War II and had died in a crash in New Guinea before she was born. Recently the military found the wreckage of the aircraft and recovered a couple hands full of human remains, all that was left of the crew, but they were brought back and the family was finally able to bury their lost airman. She wanted to board the B-24 and sit in the bombardier seat. She said she’d probably bawl the whole time.
To fly on the B-17, I had to sign a waiver. The waiver signed away my rights (or Kathy’s, actually) to sue in case the plane didn’t have a happy landing after taking off. The waiver form said that the plane had a “provisional” certification from the FAA, which means, I suppose, that it’s known to take off and land safely most of the time but doesn’t meet current safety standards. I signed it, as did the few other “passengers” that were going along. We climbed into the plane, quite literally because there were neither steps nor gangway. We grabbed a handhold over the rear hatch and lifted ourselves through the opening. The plane obviously wasn’t made for passengers or comfort, so it’s neither heated (which is why they invented "bomber jackets") nor pressurized. Plus, there are no seats except those for the pilots and a couple of the original crew, like the radioman and the bombardier. We sat on the floor in various places around the plane as we took off, strapped to the sidewalls of the bare aluminum fuselage with antique military seat belts. They told us that once we were airborne we could unbuckle and roam around the plane, but that we shouldn’t lean on the hatch we had entered through, as it was made for easy exiting and could give way under pressure. No one went near it during the flight!
I had ear plugs for the flight, as four 1200 horsepower air cooled engines make a lot of racket. And I had multiple layers of clothing, because the ground temperature was in the 40s when we took off, and it was even cooler up in the air (and the bomber has an open hatch on top through which you can stick your head into the 160+mph slipstream if you want, which of course also lets in a very cool blast of air). But what I needed, I found out, was a “hard hat.” Climbing through the hatches and clambering among the bomb bays and passages, I kept banging my head on metal edges. No serious damage was done, but it hurt. It was quite the adventure to be crawling through this ancient aircraft, sitting in the bombardier’s seat, manning the waist guns or even looking out the top gun turret, as it flew over north Texas. Too soon we were given the signal to re-buckle in our takeoff positions and prepare for landing.
Tom Landry is an icon in Texas. While I was living in Texas during my med school years and beyond, he coached the Dallas Cowboys, back in the glory years when the media declared them to be “America’s Team.” At least once, during every broadcast game some announcer would introduce him as “the only coach the Cowboys have ever had.” He coached the team during some great years but was unceremoniously fired when Jerry Jones bought the team many years ago. Well, Tom Landry died of leukemia about eight years ago, and each year there is a leukemia benefit in Dallas in his name. And Tom Landry flew B-17s during WW II, though that wasn’t ever mentioned by the sportscasters. He flew thirty missions in these planes and survived a crash landing in Czechoslovakia during the war. Additionally, his older brother Robert also flew B-17s and was killed in a crash.
Meanwhile, my bone marrow has been doing its best to survive the first round of chemotherapy, after having been intentionally but heavily damaged. I told you that I’d be getting daily doses of Neupogen, which I’ve been giving to myself after the nurse “certified” me in giving myself subcutaneous injections. After three days of Neupogen my white count had risen from a total of 2,400 with only about 360 neutrophils and 700 lymphocytes, to a total count of 16,900 with 12,900 (!) neutrophils and 1,100 lymphocytes. So the Neupogen worked very well, as it should at $400 a shot (made by Amgen, if you want to know). It raised my “good guys” significantly with only a very small rise in the number of lymphocytes. If my marrow survives, I survive. I saw my doc here in Denton on Friday and he pronounced me well enough to begin Round Two. And so we will. My appointment is a little before Nine-O-Nine on Monday morning and off we’ll go.
Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/
B-17 pictures below:
http://www2.snapfish.com/share/p=54691205104447181/l=352500024/g=28835691/otsc=SYE/otsi=SALB
Chapter 1, Verse 8
March 9, 2008
Survivors
Over 12,000 B-17s were built before and during World War II and this aircraft was instrumental in the American war efforts in Europe. It flew higher and farther than most other aircraft of its type and flew strategic missions to places that were heavily protected and very dangerous for the Allied air crews, like oil refineries, munitions factories and railroad facilities. For most of the war it also flew farther than its fighter escorts could, and so was heavily armed with a dozen or more fifty-caliber machine guns so its crew could defend themselves against the enemy fighters sent against them. For this reason it was called the Flying Fortress.
But the B-17 wasn’t invincible. Over 4000 of them were lost in combat with the loss of over 45,000 crewmen. They were flown in huge flights of up to a few hundred planes, towards target areas known to be defended by antiaircraft artillery and fighters, and these large gatherings of aircraft, sometimes called “aluminum overcast” (as one surviving B-17 is called), were easy targets. Missions over defended areas of Europe frequently resulted in losses of ten to fifteen percent or more of the bombers.
Though the loss rates were often very high, the B-17 gained an almost mythic reputation as a survivor, a plane that could take horrendous damage but still manage to get home safely. There are many, many stories of badly damaged B-17s, some missing the entire nose, some missing parts of wings or tails, or with large holes in the sides of the fuselage, coming in for landings back at their bases in England or Italy. One plane was so badly damaged that the other airmen in the formation declared that they had seen it destroyed, only to see it show up, late and heavily damaged, at its home base in England. One of this plane’s crewmen said, “The plane can be cut and slashed almost to pieces by enemy fire and bring its crew home.”
I had signed up for a flight on “Nine-O-Nine,” a restored B-17 named for a famous B-17 which had gone through 140 missions without being damaged or aborting its mission. It was flying out of Alliance Airport in Ft. Worth, as part of the Wings of Freedom tour of three historic World War II aircraft, also including a B-24 and a B-25. These planes are survivors too, this B-17 being only one of about fourteen of the original 12,700 B-17s manufactured that still are in flyable condition. I was going to be flying on a plane that is older than I am. A mobile, flyable piece of history.
While we were at the airport, watching the planes come in for their landings, we stood near a woman about our age, who was watching intently. We talked to her and asked if she, too, was taking a flight. She wasn’t but was very interested in the B-24 “Liberator” bomber that was coming in. Her dad had been a bombardier on a B-24 during World War II and had died in a crash in New Guinea before she was born. Recently the military found the wreckage of the aircraft and recovered a couple hands full of human remains, all that was left of the crew, but they were brought back and the family was finally able to bury their lost airman. She wanted to board the B-24 and sit in the bombardier seat. She said she’d probably bawl the whole time.
To fly on the B-17, I had to sign a waiver. The waiver signed away my rights (or Kathy’s, actually) to sue in case the plane didn’t have a happy landing after taking off. The waiver form said that the plane had a “provisional” certification from the FAA, which means, I suppose, that it’s known to take off and land safely most of the time but doesn’t meet current safety standards. I signed it, as did the few other “passengers” that were going along. We climbed into the plane, quite literally because there were neither steps nor gangway. We grabbed a handhold over the rear hatch and lifted ourselves through the opening. The plane obviously wasn’t made for passengers or comfort, so it’s neither heated (which is why they invented "bomber jackets") nor pressurized. Plus, there are no seats except those for the pilots and a couple of the original crew, like the radioman and the bombardier. We sat on the floor in various places around the plane as we took off, strapped to the sidewalls of the bare aluminum fuselage with antique military seat belts. They told us that once we were airborne we could unbuckle and roam around the plane, but that we shouldn’t lean on the hatch we had entered through, as it was made for easy exiting and could give way under pressure. No one went near it during the flight!
I had ear plugs for the flight, as four 1200 horsepower air cooled engines make a lot of racket. And I had multiple layers of clothing, because the ground temperature was in the 40s when we took off, and it was even cooler up in the air (and the bomber has an open hatch on top through which you can stick your head into the 160+mph slipstream if you want, which of course also lets in a very cool blast of air). But what I needed, I found out, was a “hard hat.” Climbing through the hatches and clambering among the bomb bays and passages, I kept banging my head on metal edges. No serious damage was done, but it hurt. It was quite the adventure to be crawling through this ancient aircraft, sitting in the bombardier’s seat, manning the waist guns or even looking out the top gun turret, as it flew over north Texas. Too soon we were given the signal to re-buckle in our takeoff positions and prepare for landing.
Tom Landry is an icon in Texas. While I was living in Texas during my med school years and beyond, he coached the Dallas Cowboys, back in the glory years when the media declared them to be “America’s Team.” At least once, during every broadcast game some announcer would introduce him as “the only coach the Cowboys have ever had.” He coached the team during some great years but was unceremoniously fired when Jerry Jones bought the team many years ago. Well, Tom Landry died of leukemia about eight years ago, and each year there is a leukemia benefit in Dallas in his name. And Tom Landry flew B-17s during WW II, though that wasn’t ever mentioned by the sportscasters. He flew thirty missions in these planes and survived a crash landing in Czechoslovakia during the war. Additionally, his older brother Robert also flew B-17s and was killed in a crash.
Meanwhile, my bone marrow has been doing its best to survive the first round of chemotherapy, after having been intentionally but heavily damaged. I told you that I’d be getting daily doses of Neupogen, which I’ve been giving to myself after the nurse “certified” me in giving myself subcutaneous injections. After three days of Neupogen my white count had risen from a total of 2,400 with only about 360 neutrophils and 700 lymphocytes, to a total count of 16,900 with 12,900 (!) neutrophils and 1,100 lymphocytes. So the Neupogen worked very well, as it should at $400 a shot (made by Amgen, if you want to know). It raised my “good guys” significantly with only a very small rise in the number of lymphocytes. If my marrow survives, I survive. I saw my doc here in Denton on Friday and he pronounced me well enough to begin Round Two. And so we will. My appointment is a little before Nine-O-Nine on Monday morning and off we’ll go.
Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/
B-17 pictures below:
http://www2.snapfish.com/share/p=54691205104447181/l=352500024/g=28835691/otsc=SYE/otsi=SALB
Wednesday, March 5, 2008
Of Anniversaries and Life's Celebrations
Dave’s Great Adventure, Book Three
Chapter 1, Verse 7
March 5, 2008
Of Anniversaries and Life’s Celebrations
We all celebrate anniversaries of various types. Some are national anniversaries, like the Fourth of July or the remembrance of D-Day, and the like. But most of the anniversaries we celebrate are more personal. The one we most commonly celebrate is our birthday, for if we hadn’t survived that trip into our world we wouldn’t have the annual gathering of friends and family with the cake, candles and gifts, and the ritual of having songs sung badly to us, sometimes with references to monkeys and zoo smells, too.
And there are other anniversaries. The anniversary of the start of a job, when you might get a small raise in pay, or the anniversary marking many years at that job, when you might be able to hang it up and retire. And there are the dates we remember because they are special only to us; the memory of a first date with our future spouse, or the time we moved to a far-off place (“Omigosh, has it really been twenty-six years since we moved to Frankfurt?”), or more importantly, the remembrance of a wedding anniversary, a most important date that husbands fail to remember only under pain of icy stares and a curt “Nothing” as the answer to the question, “What’s wrong?”
I was reminded of anniversaries again this week. I joined many of our teammates from TNT at a couple of training sessions, staying distant from those who were sniffling or coughing. Kim is one of our teammates and was there. As of a couple of weeks ago she is three years out from her treatment for a lymphoma and celebrated a clean bill of health from her doctor, still having no signs of the disease. The team threw her a party, for few things are more important when you’ve had cancer than the celebration of your victory over that disease. And I also saw Ethan this Saturday morning at training near Grapevine Lake, where the team runs each weekend. Ethan is nine years old and is about to celebrate his sixth year in remission, after having been treated for leukemia when he was but three years old. He’s doing just great.
Ethan and I share a sixth anniversary. That Saturday when I was out with the team marked almost exactly six years since I found out that I had leukemia. Our anniversaries are a bit reversed however, as he’s celebrating six years of being disease free, whereas I’m celebrating six years of having the disease. Now, you might not think of that as something you’d normally want to celebrate, but to me it is. You see, when I first saw my oncologist back in early 2002, he told me the average survival with my disease was about six to ten years. Pessimist that I am, I zeroed in on the six year figure, figuring that’s when I was scheduled to die, in 2008. Many of the things we did subsequent to my visit with my doctor were based on that assumption, including moving to Texas to be near family and buying a home in a retirement community so Kathy would have built-in friends, neighbors and activities when I died this year.
I’ve spent my anniversaries with ups and downs in the course of managing my disease. On my first anniversary, in 2003, I was in a great remission, after having completed four cycles of the brand new FCR (Fludara, Cytoxan and Rituxan) chemotherapy regimen. But by my 2004 anniversary, I had started to relapse and underwent more intense chemotherapy and a stem cell collection. 2005 was good. I was in remission again, but found out six months later that I was relapsing yet again. The 2006 date was marked by watching my white count slowly climb, though it was doing so very slowly at the time. By 2007, however, it was starting to climb more rapidly and it was time to do something. So, on my 2008 anniversary, I’m celebrating six years of living with this disease and doing just about as well as one can do when you have leukemia. I’m still alive and death is apparently not imminent. And I’m celebrating being able to try out a new course of therapy for my disease. And just what should I do to celebrate this anniversary?
Our younger son asked why we were doing the FCR again, when I had relapsed within a year of finishing using it years ago. Fair question. First of all, there is a small subset of folks who have been given the FCR and seem to have been cured. Years after their treatment with this regimen, they have no signs of the disease and even very sensitive testing shows no molecular evidence of CLL. The folks at MDA have told me on several occasions that they think we stopped too soon when we quit after only four cycles back in 2002, the implication being that I might have had a longer remission or even achieved one of those possible cures if we’d been more aggressive. Further, the testing of this regimen against other “standard” treatments for relapsed CLL shows that it has become the best available regimen, achieving the longest remissions.
So, on this anniversary we’re using FCR again and, as noted multiple times, adding the drug Avastin to the regimen. It’s important to remember that the Avastin has not been used in CLL before and its addition to the FCR is not designed to effect a cure, but rather to hopefully help me get into a deeper and more durable remission, during which time a cure may be found. Remember that Dr. Keating has sort of “promised” me a cure within my lifetime.
Meanwhile, things are going sort of as expected, but not really according to plan. My white count dropped dramatically after my first series of infusions, as I’ve previously reported. That’s what the chemotherapy is supposed to do, but the white cell numbers dropped further than I, and apparently the staff here in Denton, expected. The low point, or nadir, is generally about 10-14 days from the infusions. So, we were expecting a “bounce” in my numbers this week, which is now three weeks from the start of my infusions in Houston. Surprise! My numbers are continuing to drop. My white cell count as of Monday was 2,400 with only 900 neutrophils. Remember that I had about 1,400 neutrophils last week. Therefore, most of the drop in the last week was in neutrophils, which are the white cells we want to protect since they kill off the bacteria that surround me at all times and attempt to invade my body every day. This continued drop is likely an Avastin effect.
With that low count, which was done by cell-counting machine, the lab followed up with a more accurate manual count, just to be sure of what was going in. The manual recount (sounds like election stuff, huh?) came up with a neutrophil count of only 360!
That low count apparently triggered some phone calls to Houston and discussions about the next step. It first of all is hard to imagine giving me more chemotherapy when the first round has damaged and depleted my marrow so extensively already, yet I’m scheduled to start again next Monday, the 10th. Secondly, if I get more drugs starting on Monday, should the doses be reduced? And lastly, should I be given injections of white cell growth factors (Neupogen) to help bring my neutrophil count back up?
Last things first. I mentioned the white cell growth factor in my last letter. I’ve had it in the past, when my counts were very low, but the use is controversial, because though the drug is designed to stimulate the growth of neutrophils (good!) it can also stimulate the growth of CLL cells (obviously counterproductive). But first I need to survive the treatments. So, the “art” of medicine came to the fore again, trying to balance the good and the bad, and as of Wednesday I’m getting shots of Neupogen daily, for at least a few days (at about $400 a shot). We’ll see what my counts are doing by the end of the week when I see my doc in preparation for the next round.
And the folks at MDA said that, no, they wouldn’t stop the infusions or reduce the dosages if my counts are depressed but they would consider waiting longer between rounds of infusions. We’ll have to wait until next Monday to see if my white counts have recovered enough to continue for now, or whether we need to wait a few days or a week or more. Stay tuned, as this might get interesting.
I received a number of nice messages from friends and family after my last letter. Our neighbor and good friend Bonnie checked in with a question about whether I was sharing all my self-medication regimens with my docs. Good question. They’ve asked about every single thing I’m taking; supplements, baby aspirin, Motrin, calcium, Imitrex, etc., so they know about all the drugs I might use, but I hadn’t told them specifically what combinations I use on occasion, like when I had the miserable headaches after the first round of infusions in Houston. Speaking of which, I recalled having a similar situation with horrible headaches at some point during my first round of FCR and needing more than usual amounts of drugs to knock it out. I looked through my old letters and found that I had just about the same reaction and took just about the same combination of drugs just after my first infusion of just FC back in July 2002, even before I had the Rituxan. So, I can’t blame the Rituxan but rather the destruction of billions and billions of white cells for that lousy headache.
In the last letter I told you I’d heard from my step-brother/cousin Tom, down in Florida. Nobody even asked about that tangled, hillbilly description of our relationship. Well, just to make things more interesting, this week I heard from Charlotte, up in Iowa, who is my double first cousin, once removed. Charlotte told me that my descriptions of what was going on with my treatments were very educational and she enjoyed reading about them. She also mentioned how sad it was watching the video clip I attached, about the professor who was dying of pancreatic cancer but nevertheless continued to talk about the great things he had enjoyed about his life. Yes, it was sad. I think he is an exceptionally brave guy and I hope I can be like him.
And I had just sent out the last letter, with the description of “Cin Chili” sold by Cindy, the sister of our friend in Colorado, when Kathy’s sister wrote that she had just seen Cindy on the TV in Albuquerque and that she was in town at a Fiery Foods Festival. So, Carol and Frank went to the festival, got their taste buds scorched by sampling copious amounts of spicy goods and bought some Cin Chili mix and a batch of prepared Cin Chili too.
We heard from Bobbie again. Bobbie lives in El Paso and has been a friend for many years, as she was our realtor when we were in Germany and were renting out two homes in that town. Bobbie is a feisty German gal and said she was sending some of her guardian angels to be with me and turn everything around for the best. She said that the Germans were stubborn and she was sending stubbornness to me as well to give me the strength to fight on and win. There’s a lot of German blood in me too, from my mom’s side of the family. My wife has always said I was stubborn. That’s why, I guess.
We heard from Larry this weekend, but not with an e-mail. Larry has been my financial advisor for about fifteen years or so, though I probably frustrate him because I’m a lazy investor, a buy-and-hold kinda guy, despite his best attempts to get me going and moving money around as the markets change. But, omigosh, that takes so many decisions, Larry! Some folks who believe in astrology would say that’s because I’m a Libra which makes me indecisive. Whatever. Larry sent us a box of home-made chocolate chip cookies from San Antonio, cookies he and his wife Ginny made. Thanks so much, Larry. They’re almost gone already.
And of course, I’m still getting cards from Joan.
I better wrap this up and get it in the mail. So, what am I going to do for my anniversary, the one I mentioned a long time ago? Well, I’m going flying. An antique B-17 bomber is coming to town on a “heritage tour” and they offer flights for those who want to go up in it or the other plane on the tour, a B-24. I’ve been trying to get on one of these flights for years but have missed out over and over, either because I wasn’t in town when they came through Denver or Dallas/Ft. Worth or because they were booked up when I finally realized they were in town. This time I found out in time and have reservations on Friday afternoon to fly on the “Nine-0-Nine,” a restored B-17. I’m not sure if most of you, except for my friend Peter in Denver, would think this is cool, but I’m really looking forward to it.
Enough for now. I’ll be back to tell you about what we’re going to do with my low white counts and the plans for more chemotherapy when we know something.
Dave
dreck@prodigy.net
Chapter 1, Verse 7
March 5, 2008
Of Anniversaries and Life’s Celebrations
We all celebrate anniversaries of various types. Some are national anniversaries, like the Fourth of July or the remembrance of D-Day, and the like. But most of the anniversaries we celebrate are more personal. The one we most commonly celebrate is our birthday, for if we hadn’t survived that trip into our world we wouldn’t have the annual gathering of friends and family with the cake, candles and gifts, and the ritual of having songs sung badly to us, sometimes with references to monkeys and zoo smells, too.
And there are other anniversaries. The anniversary of the start of a job, when you might get a small raise in pay, or the anniversary marking many years at that job, when you might be able to hang it up and retire. And there are the dates we remember because they are special only to us; the memory of a first date with our future spouse, or the time we moved to a far-off place (“Omigosh, has it really been twenty-six years since we moved to Frankfurt?”), or more importantly, the remembrance of a wedding anniversary, a most important date that husbands fail to remember only under pain of icy stares and a curt “Nothing” as the answer to the question, “What’s wrong?”
I was reminded of anniversaries again this week. I joined many of our teammates from TNT at a couple of training sessions, staying distant from those who were sniffling or coughing. Kim is one of our teammates and was there. As of a couple of weeks ago she is three years out from her treatment for a lymphoma and celebrated a clean bill of health from her doctor, still having no signs of the disease. The team threw her a party, for few things are more important when you’ve had cancer than the celebration of your victory over that disease. And I also saw Ethan this Saturday morning at training near Grapevine Lake, where the team runs each weekend. Ethan is nine years old and is about to celebrate his sixth year in remission, after having been treated for leukemia when he was but three years old. He’s doing just great.
Ethan and I share a sixth anniversary. That Saturday when I was out with the team marked almost exactly six years since I found out that I had leukemia. Our anniversaries are a bit reversed however, as he’s celebrating six years of being disease free, whereas I’m celebrating six years of having the disease. Now, you might not think of that as something you’d normally want to celebrate, but to me it is. You see, when I first saw my oncologist back in early 2002, he told me the average survival with my disease was about six to ten years. Pessimist that I am, I zeroed in on the six year figure, figuring that’s when I was scheduled to die, in 2008. Many of the things we did subsequent to my visit with my doctor were based on that assumption, including moving to Texas to be near family and buying a home in a retirement community so Kathy would have built-in friends, neighbors and activities when I died this year.
I’ve spent my anniversaries with ups and downs in the course of managing my disease. On my first anniversary, in 2003, I was in a great remission, after having completed four cycles of the brand new FCR (Fludara, Cytoxan and Rituxan) chemotherapy regimen. But by my 2004 anniversary, I had started to relapse and underwent more intense chemotherapy and a stem cell collection. 2005 was good. I was in remission again, but found out six months later that I was relapsing yet again. The 2006 date was marked by watching my white count slowly climb, though it was doing so very slowly at the time. By 2007, however, it was starting to climb more rapidly and it was time to do something. So, on my 2008 anniversary, I’m celebrating six years of living with this disease and doing just about as well as one can do when you have leukemia. I’m still alive and death is apparently not imminent. And I’m celebrating being able to try out a new course of therapy for my disease. And just what should I do to celebrate this anniversary?
Our younger son asked why we were doing the FCR again, when I had relapsed within a year of finishing using it years ago. Fair question. First of all, there is a small subset of folks who have been given the FCR and seem to have been cured. Years after their treatment with this regimen, they have no signs of the disease and even very sensitive testing shows no molecular evidence of CLL. The folks at MDA have told me on several occasions that they think we stopped too soon when we quit after only four cycles back in 2002, the implication being that I might have had a longer remission or even achieved one of those possible cures if we’d been more aggressive. Further, the testing of this regimen against other “standard” treatments for relapsed CLL shows that it has become the best available regimen, achieving the longest remissions.
So, on this anniversary we’re using FCR again and, as noted multiple times, adding the drug Avastin to the regimen. It’s important to remember that the Avastin has not been used in CLL before and its addition to the FCR is not designed to effect a cure, but rather to hopefully help me get into a deeper and more durable remission, during which time a cure may be found. Remember that Dr. Keating has sort of “promised” me a cure within my lifetime.
Meanwhile, things are going sort of as expected, but not really according to plan. My white count dropped dramatically after my first series of infusions, as I’ve previously reported. That’s what the chemotherapy is supposed to do, but the white cell numbers dropped further than I, and apparently the staff here in Denton, expected. The low point, or nadir, is generally about 10-14 days from the infusions. So, we were expecting a “bounce” in my numbers this week, which is now three weeks from the start of my infusions in Houston. Surprise! My numbers are continuing to drop. My white cell count as of Monday was 2,400 with only 900 neutrophils. Remember that I had about 1,400 neutrophils last week. Therefore, most of the drop in the last week was in neutrophils, which are the white cells we want to protect since they kill off the bacteria that surround me at all times and attempt to invade my body every day. This continued drop is likely an Avastin effect.
With that low count, which was done by cell-counting machine, the lab followed up with a more accurate manual count, just to be sure of what was going in. The manual recount (sounds like election stuff, huh?) came up with a neutrophil count of only 360!
That low count apparently triggered some phone calls to Houston and discussions about the next step. It first of all is hard to imagine giving me more chemotherapy when the first round has damaged and depleted my marrow so extensively already, yet I’m scheduled to start again next Monday, the 10th. Secondly, if I get more drugs starting on Monday, should the doses be reduced? And lastly, should I be given injections of white cell growth factors (Neupogen) to help bring my neutrophil count back up?
Last things first. I mentioned the white cell growth factor in my last letter. I’ve had it in the past, when my counts were very low, but the use is controversial, because though the drug is designed to stimulate the growth of neutrophils (good!) it can also stimulate the growth of CLL cells (obviously counterproductive). But first I need to survive the treatments. So, the “art” of medicine came to the fore again, trying to balance the good and the bad, and as of Wednesday I’m getting shots of Neupogen daily, for at least a few days (at about $400 a shot). We’ll see what my counts are doing by the end of the week when I see my doc in preparation for the next round.
And the folks at MDA said that, no, they wouldn’t stop the infusions or reduce the dosages if my counts are depressed but they would consider waiting longer between rounds of infusions. We’ll have to wait until next Monday to see if my white counts have recovered enough to continue for now, or whether we need to wait a few days or a week or more. Stay tuned, as this might get interesting.
I received a number of nice messages from friends and family after my last letter. Our neighbor and good friend Bonnie checked in with a question about whether I was sharing all my self-medication regimens with my docs. Good question. They’ve asked about every single thing I’m taking; supplements, baby aspirin, Motrin, calcium, Imitrex, etc., so they know about all the drugs I might use, but I hadn’t told them specifically what combinations I use on occasion, like when I had the miserable headaches after the first round of infusions in Houston. Speaking of which, I recalled having a similar situation with horrible headaches at some point during my first round of FCR and needing more than usual amounts of drugs to knock it out. I looked through my old letters and found that I had just about the same reaction and took just about the same combination of drugs just after my first infusion of just FC back in July 2002, even before I had the Rituxan. So, I can’t blame the Rituxan but rather the destruction of billions and billions of white cells for that lousy headache.
In the last letter I told you I’d heard from my step-brother/cousin Tom, down in Florida. Nobody even asked about that tangled, hillbilly description of our relationship. Well, just to make things more interesting, this week I heard from Charlotte, up in Iowa, who is my double first cousin, once removed. Charlotte told me that my descriptions of what was going on with my treatments were very educational and she enjoyed reading about them. She also mentioned how sad it was watching the video clip I attached, about the professor who was dying of pancreatic cancer but nevertheless continued to talk about the great things he had enjoyed about his life. Yes, it was sad. I think he is an exceptionally brave guy and I hope I can be like him.
And I had just sent out the last letter, with the description of “Cin Chili” sold by Cindy, the sister of our friend in Colorado, when Kathy’s sister wrote that she had just seen Cindy on the TV in Albuquerque and that she was in town at a Fiery Foods Festival. So, Carol and Frank went to the festival, got their taste buds scorched by sampling copious amounts of spicy goods and bought some Cin Chili mix and a batch of prepared Cin Chili too.
We heard from Bobbie again. Bobbie lives in El Paso and has been a friend for many years, as she was our realtor when we were in Germany and were renting out two homes in that town. Bobbie is a feisty German gal and said she was sending some of her guardian angels to be with me and turn everything around for the best. She said that the Germans were stubborn and she was sending stubbornness to me as well to give me the strength to fight on and win. There’s a lot of German blood in me too, from my mom’s side of the family. My wife has always said I was stubborn. That’s why, I guess.
We heard from Larry this weekend, but not with an e-mail. Larry has been my financial advisor for about fifteen years or so, though I probably frustrate him because I’m a lazy investor, a buy-and-hold kinda guy, despite his best attempts to get me going and moving money around as the markets change. But, omigosh, that takes so many decisions, Larry! Some folks who believe in astrology would say that’s because I’m a Libra which makes me indecisive. Whatever. Larry sent us a box of home-made chocolate chip cookies from San Antonio, cookies he and his wife Ginny made. Thanks so much, Larry. They’re almost gone already.
And of course, I’m still getting cards from Joan.
I better wrap this up and get it in the mail. So, what am I going to do for my anniversary, the one I mentioned a long time ago? Well, I’m going flying. An antique B-17 bomber is coming to town on a “heritage tour” and they offer flights for those who want to go up in it or the other plane on the tour, a B-24. I’ve been trying to get on one of these flights for years but have missed out over and over, either because I wasn’t in town when they came through Denver or Dallas/Ft. Worth or because they were booked up when I finally realized they were in town. This time I found out in time and have reservations on Friday afternoon to fly on the “Nine-0-Nine,” a restored B-17. I’m not sure if most of you, except for my friend Peter in Denver, would think this is cool, but I’m really looking forward to it.
Enough for now. I’ll be back to tell you about what we’re going to do with my low white counts and the plans for more chemotherapy when we know something.
Dave
dreck@prodigy.net
Friday, February 29, 2008
The Nadir
Dave’s Great Adventure, Book 3
Chapter 1, Verse 6
February 28, 2008
The Nadir
When I started whining about this Kathy reminded me that I used to complain about it back when I first went through chemotherapy in 2002. I’d spend most of a week going through the infusions, then about another week recovering. I’d feel pretty crappy during all that time and we’d spend most of our time at home. And then, after I’d spent two weeks in the house and just as I was starting to feel normal again, I’d hit my nadir.
The nadir is the low point of a chemotherapy patient’s white count. I’m there now. The deal about the nadir is that when your white cell counts are extremely low, you’re also at risk for all kinds of infections from both internal and external origins. We all carry around very dangerous bacteria in and on our bodies, but generally they aren’t a really big deal because our immune systems keep them under control. We have staph in our noses, E. coli in our bowels, strep and fungi on our skin, and women have any number of very dangerous organisms in their vaginas like clostridia and pseudomonas, but it’s just not a big deal most of the time. Our immune systems are wonderfully designed to deal with these things under normal circumstances. But if the immune system is significantly weakened by something, those organisms can go wild and attack. That’s what happens to people with AIDS. The organisms that normally wouldn’t be a big deal can rise up and kill them.
This is also a time that I’m more likely to get diseases from other people, which is why Kathy watches over me so closely when we go anywhere. There is a lot of flu going around Texas right now and several people, including kids, have died of it. (If you haven’t gotten your flu shot yet, it really isn’t too late—it can help even up to April or May according to my sources.) Because of my compromised immune system we’ve been spending way too much time indoors—at home. Just to be very cautious we’ve skipped the symphony, church, and a couple of plays we had planned to go to, because I’m now one of the immunocompromised folks that could die from the flu if I were to get it. And in a crowd, you really don’t know who has it.
So I’m feeling pretty normal again, but can’t be around too many folks, I guess.
Now, Dr. Keating had given me the “no restrictions” talk regarding the chemotherapy when we met in Houston a couple of weeks ago. But that went against everything I’d been told up to that point, as I’d previously been given lots of restrictions around getting the chemo and during its aftermath, especially during the nadir. When my local doc’s nurse came out with my CBC (complete blood count) results, she told me my white cell count was pretty low, at 2,600, and that I was at risk of infection. She gave me the “fresh fruits and vegetables” talk again, the one which had caused Dr. Keating to smile at its mention. Also, my neutrophil count had dropped some more, to 1,400, lower than the low end of the normal range for neutrophils, but that’s not extremely low really. In the past I’ve had times when my neutrophils were down in the 100 range. Now that’s pretty low. In fact, just before my stem cell collection in early 2004, my neutrophil count was zero for several days and I survived. But I digress.
Medicine has been described as a science and an art. And it truly is a blend of both. In this particular situation, the science says that since my white cell counts are depressed, I’m at increased risk for infections. And that’s absolutely true. The art though is trying to decide how low is too low and what activities should be prohibited. Most folks in medicine tend to be conservative about these things, not wanting to take unnecessary risks with their patients. But others are more relaxed in their approach, not wanting to put unnecessary restrictions on their patients. It just varies depending upon your doc’s experiences and risk aversion. As an example, when my white count got down to 1,100 in the fall of 2002, my doc in Denver kept me out of the clinic and actually started me on injections of Neupogen, a white cell growth factor. But just a couple of years later, one of our nurses in the same clinic was going through chemotherapy for breast cancer and when her count got down to about 1,000, her doc didn’t think anything of it and let her keep working, bald head and all. And the Neupogen; well, it works well to stimulate the growth of neutrophils, but my docs here in Denton don’t want to use it because when it’s stimulating the growth of neutrophils, it’s also stimulating the growth of the residual bad guys too. Different places, different opinions—that’s the “art” part of medicine.
Which brings me back to the “nadir.” It’s been about two full weeks since the end of my last infusions of chemotherapy but my white count has continued to drop. That’s for a couple of reasons. Firstly, the Cytoxan has been gone since shortly after it was infused, but during its short time in my veins and marrow, it set about cutting down all the rapidly dividing cells it could find throughout my body, including white cells being newly formed. Likewise, the Fludara was targeting all the white cells it could find during the three days of infusions, so there was an immediate drop in my white count during that time. But now that the rapidly dividing cells have been “clear cut,” the white cells that were to replace my naturally and chemically dying cells aren’t in the pipeline and can’t rush into the battle to replace the ones that have been lost.
And secondly, the Rituxan and the Avastin are antibodies, as I’ve previously mentioned. They’re still hanging around, and though slowly being eliminated, they’re still doing their jobs. They won’t be totally gone until about the time for the next infusions, presently scheduled for March 10th. The Rituxan, remember, specifically seeks out and targets lymphocytes with that CD-20 antigen (the CD stands for “cluster designator” as the CLL lymphocytes grow in little clusters of identical clones in the lymph nodes) and continues to reduce their numbers.
I should have a rebound in my counts shortly, as those stem cells which weren’t killed off will be recovering and starting to make more white cells again, both of the good and bad varieties. I’ll find out how much of a rebound on Monday when I get my next CBC.
Sorry to be so didactic, but there are folks out there who crave these details. Steve, a good friend from Denver and the husband of one of my patients, said “And I always appreciate the technical descriptions along with the narrative-- it must be the engineer in me.” And Monica, also from Denver, said, “It's kind of like attending an online college course in the study of leukemia, without the exams and tuition!!” Hmm…is that good or bad? Monica and her husband Don used to bring me no-beans red Texas chili when I got sick back in 2002, and good stuff it was. It was made according to a recipe used by Don’s sister, Cindy, who tied Bobby Flay, of Food Network fame, in a televised chili cook-off not too long ago (she markets her spice mix as “Cin Chili” and it’s available at Central Markets in the DFW area and, of all places, Cosmic Chili in Bozeman, Montana, if you’d like to try her stuff...and you should!).
Speaking of didactic, I want to tell you a little about what some of the numbers I’ve been throwing around mean. I’ve mentioned that my white cell count, which includes all the varieties of white cells, was about 90,000 before we started the infusions. What that means is that in every cubic centimeter (CC) of my blood, a volume about three-eights of an inch square, there were 90,000 white cells. About 90% of those white cells were lymphocytes, so I had about 81,000 of them per CC of blood. Now, three weeks after the infusions, there are but 700 lymphocytes per CC of blood, so remarkably have the drugs sought out and specifically killed them. We’ve taken out about 97% of all my white cells, and over 99% of my lymphocytes, the great majority of which were CLL cells, but have “only” taken out about 75% of the other, normal kinds of white cells. That’s the great news. But it’s also the bad news in a way. Those normal lymphs that are being taken down…well, they make my antibodies. That’s another reason I’ll be at some risk for many months to come, even after we conclude my current round of drugs.
Meanwhile, Kathy has managed to keep me healthy with her crazy ways. I’ve told you about her wearing masks when she cooked, and spraying down the tub after she used it because she had a little cold. Well, last week I noticed a strange “scent” in the air, kind of an antiseptic smell. I tried to place it but couldn’t so asked Kathy what it was. Well, she admitted that she’d sprayed the bed down with Lysol to try to kill off the viruses she was shedding. She’s a little crazy, but, man, is she dedicated to keeping me well.
I came across a little article recently titled “Treating CLL: Optimism Not Required.” In the article it says, “Contrary to popular belief, there is no evidence that an optimistic attitude leads to a better cancer outcome. In fact, insisting on a cheery disposition when someone is struggling with a scary disease may actually do more harm than good, according to a leading psycho-oncologist.” Now, first of all, have any of you ever heard of a “psycho-oncologist?” It gives me the mental image of a guy in a white lab coat walking around the Bates Motel with a long knife in his (or her, ‘cause I’m not sexist) hand. This guy goes on to say, “The flipside of believing a smile can banish cancer is believing that a frown can cause it.”
I’m glad to hear that, because when I first found out that I had leukemia and that there was no cure, I was determined to go about my life in a way that no one would be able to tell I was sick. I was going to smile, keep up with my work, not complain, and I was going to beat the disease. Yeah, I was going to be the first! Everybody who gets cancer thinks that way, that they’re going to beat the disease even though millions of people before them, good folks with great attitudes and work ethics couldn’t.
But things didn’t work out that way. The first thing was the depression that can overwhelm you when you have found out that you’re going to die in a finite period of time. We all have an image of our life going on out before us in a path that leads to an ever-receding horizon, one we’re never going to get to. But when you get the diagnosis of cancer, especially one with no known cure, suddenly there’s an earthquake in front of you and the earth falls away, leaving you facing a cliff. And you can’t stop advancing towards it. Each day the edge of the cliff gets closer. I put my fears about this into a message to my family and friends in August of 2002.:
http://adventureswithleukemia.blogspot.com/2002/08/reality-of-leukemia-fear-and-sorrow.html
I couldn’t escape the depression. And in time, I found I couldn’t escape the effects of the disease and its treatment. I became weakened because of the disease, the drugs, and from the emotional toll of dealing with a lethal illness. But I didn’t want to wimp out and give up. I kept going on and on and on until it became dangerous for me to try to practice medicine, something I’ll talk about in another message. Now I find out, from this psycho-oncologist, that trying to keep a positive attitude wasn’t required and neither did being depressed hurt, at least in terms of progression of the disease. Sometimes it’s hard for Type A people to just give up and not be in charge of things, especially when they have no control over what’s going on anyway. But it’s been easier for me since I did just that. I gave up control of my disease to my docs and gave up my job because I couldn’t control the effects CLL was having on me. And I’m better off for having finally done so. Thanks, psycho-oncologist, for excusing my failures.
Say, I heard recently that Avastin has now been approved for use in breast cancer. And hopefully we’ll find that it works for CLL as well (though we won’t know that for some time). The more uses it gets approved for, the more the stock in its manufacturer is going to rise. And at $30,000 a dose, they may make some money. Hey, Genentech is calling to all you investors out there!
I heard from my step-brother/cousin Tom recently. He and his wife have retired to The Villages down in Florida. “Disneyland For Old Folks,” he calls it. He just checked in to brag about their weather and say that they’d been out in the car with the top down. Oh, yeah, he also said he didn’t really want to hear about how many tax dollars I’d been using up.
And our former neighbor Tom in Highlands Ranch, Colorado also checked in. He made an interesting offer. I’d mentioned that he had mowed my lawn and taken care of things for me while I was out of action with chemo in the past. Well, he offered to mow my lawn all the time if I’d move back to Colorado. Well, now. Maybe I can start up a bidding war or something. Say, how many of you folks here in Texas would match his offer and mow my lawn, and also, say, take out the garbage every week if I don’t move? Tom also sent another note with a more serious message. “I am really glad you are doing this for your posterity, this, your journal and genealogy will be a legacy for eternity. I mean that sincerely, it is a gift of love that probably won't be fully appreciated by your loved ones for some time to come, but trust me, it will be cherished and more than any other thing or inheritance that you might leave.” I agree with Tom, and I think all of us should write down something of our lives for our families and those that come later. I wish my dad had written down his tales of World War II. In fact, he told some stories so many times that we didn’t want to hear them after a while, but now he’s gone and we didn’t write anything down so the stories died with him. I guess that gives more ammunition to Bonnie who wants me to write that book (and a lot of you out there agree with her). But who would publish it and who would buy it?
Martin checked in to say he was in Austin for a marathon and was reading my letter on his phone. He and his brother Neil are techno-geeks and are always checking their Treo phones or their laptops for e-mail, sports news, or whatever. That reminds me; Martin’s overdue for his pap smear.
We also heard from Clovis and Phil, who were our hosts at their beautiful Alaska Wolfhouse B&B in Juneau a couple of times. We went there to recover from my stem cell collection in March 2004. Wow, Alaska in March with a bald head! Cool…literally. Some of you who have been around my scribblings for a while may remember Phil as the guy who threw his typewriter out a third floor window while in a college course. We related that episode to my problems adjusting to the addition of computers to our clinic in Colorado; I was known to damage a few keyboards and mice out of frustration. (See DGA Humor, March 11, 2004) They were wonderful, accommodating hosts and are doing well in retirement up in the small town of Connor, Washington. On our first to Juneau I found I was in good company at the Wolfhouse, as there were two other folks visiting at the same time, both with incurable cancers. Mary Lou had recurrent breast cancer and Judith had primary peritoneal cancer, a malignancy that looks and acts like ovarian cancer, but occurs in women who no longer have ovaries. I have found that, when faced with incurable disease, a lot of folks start taking care of items on their “bucket list,” as the list of things you always wanted to do before you died is fashionably called of late. Going to Alaska seems to be high on many folks’ list. Anyway, both Mary Lou and Judith fought and fought with incredible bravery, but both succumbed to their disease within about a year of our meeting. Mary Lou wrote about herself in verse, and I was getting Judith’s on-line journal fairly regularly. Judith was remarkably upbeat despite her dire circumstances, but I could tell by her descriptions of what was going on that she didn’t have much time left. Then the messages stopped. I guess, as doctor psycho-oncologist noted, a positive attitude, in and of itself, won’t keep you alive. If it would, these two brave women would still be writing.
I didn’t mean to end this on a downer, but I guess I will. Sorry.
Let me close by telling you that I’m already wondering if we can possibly complete all planned six cycles of the new chemotherapy. I pointed out that we’ve already destroyed 97% of my white cells. If the next round destroys another 97% of what’s left, I’m going to be left with not much of any white cells at all. Back in 2002, we stopped after four of six planned rounds of the FCR regimen (without Avastin) because my counts were very low. Well, we’re almost at those same levels already with only one cycle this time. The folks at MDA have told me on at least a couple of occasions that they wouldn’t have stopped when we did back in 2002, that they would have been more aggressive. I guess I’ll find out in the coming weeks how aggressive they want to be and how far we can take this process. Enough for now.
Stay tuned.
Mascot Dave
dreck@prodigy.net
PS: Please take a few moments to look at this link:
http://www.youtube.com/watch?v=_tIyt8oSLVs
and think what you would be saying during this talk.
(Thank you to my good friend Cesar in Miami for this wonderful message)
Chapter 1, Verse 6
February 28, 2008
The Nadir
When I started whining about this Kathy reminded me that I used to complain about it back when I first went through chemotherapy in 2002. I’d spend most of a week going through the infusions, then about another week recovering. I’d feel pretty crappy during all that time and we’d spend most of our time at home. And then, after I’d spent two weeks in the house and just as I was starting to feel normal again, I’d hit my nadir.
The nadir is the low point of a chemotherapy patient’s white count. I’m there now. The deal about the nadir is that when your white cell counts are extremely low, you’re also at risk for all kinds of infections from both internal and external origins. We all carry around very dangerous bacteria in and on our bodies, but generally they aren’t a really big deal because our immune systems keep them under control. We have staph in our noses, E. coli in our bowels, strep and fungi on our skin, and women have any number of very dangerous organisms in their vaginas like clostridia and pseudomonas, but it’s just not a big deal most of the time. Our immune systems are wonderfully designed to deal with these things under normal circumstances. But if the immune system is significantly weakened by something, those organisms can go wild and attack. That’s what happens to people with AIDS. The organisms that normally wouldn’t be a big deal can rise up and kill them.
This is also a time that I’m more likely to get diseases from other people, which is why Kathy watches over me so closely when we go anywhere. There is a lot of flu going around Texas right now and several people, including kids, have died of it. (If you haven’t gotten your flu shot yet, it really isn’t too late—it can help even up to April or May according to my sources.) Because of my compromised immune system we’ve been spending way too much time indoors—at home. Just to be very cautious we’ve skipped the symphony, church, and a couple of plays we had planned to go to, because I’m now one of the immunocompromised folks that could die from the flu if I were to get it. And in a crowd, you really don’t know who has it.
So I’m feeling pretty normal again, but can’t be around too many folks, I guess.
Now, Dr. Keating had given me the “no restrictions” talk regarding the chemotherapy when we met in Houston a couple of weeks ago. But that went against everything I’d been told up to that point, as I’d previously been given lots of restrictions around getting the chemo and during its aftermath, especially during the nadir. When my local doc’s nurse came out with my CBC (complete blood count) results, she told me my white cell count was pretty low, at 2,600, and that I was at risk of infection. She gave me the “fresh fruits and vegetables” talk again, the one which had caused Dr. Keating to smile at its mention. Also, my neutrophil count had dropped some more, to 1,400, lower than the low end of the normal range for neutrophils, but that’s not extremely low really. In the past I’ve had times when my neutrophils were down in the 100 range. Now that’s pretty low. In fact, just before my stem cell collection in early 2004, my neutrophil count was zero for several days and I survived. But I digress.
Medicine has been described as a science and an art. And it truly is a blend of both. In this particular situation, the science says that since my white cell counts are depressed, I’m at increased risk for infections. And that’s absolutely true. The art though is trying to decide how low is too low and what activities should be prohibited. Most folks in medicine tend to be conservative about these things, not wanting to take unnecessary risks with their patients. But others are more relaxed in their approach, not wanting to put unnecessary restrictions on their patients. It just varies depending upon your doc’s experiences and risk aversion. As an example, when my white count got down to 1,100 in the fall of 2002, my doc in Denver kept me out of the clinic and actually started me on injections of Neupogen, a white cell growth factor. But just a couple of years later, one of our nurses in the same clinic was going through chemotherapy for breast cancer and when her count got down to about 1,000, her doc didn’t think anything of it and let her keep working, bald head and all. And the Neupogen; well, it works well to stimulate the growth of neutrophils, but my docs here in Denton don’t want to use it because when it’s stimulating the growth of neutrophils, it’s also stimulating the growth of the residual bad guys too. Different places, different opinions—that’s the “art” part of medicine.
Which brings me back to the “nadir.” It’s been about two full weeks since the end of my last infusions of chemotherapy but my white count has continued to drop. That’s for a couple of reasons. Firstly, the Cytoxan has been gone since shortly after it was infused, but during its short time in my veins and marrow, it set about cutting down all the rapidly dividing cells it could find throughout my body, including white cells being newly formed. Likewise, the Fludara was targeting all the white cells it could find during the three days of infusions, so there was an immediate drop in my white count during that time. But now that the rapidly dividing cells have been “clear cut,” the white cells that were to replace my naturally and chemically dying cells aren’t in the pipeline and can’t rush into the battle to replace the ones that have been lost.
And secondly, the Rituxan and the Avastin are antibodies, as I’ve previously mentioned. They’re still hanging around, and though slowly being eliminated, they’re still doing their jobs. They won’t be totally gone until about the time for the next infusions, presently scheduled for March 10th. The Rituxan, remember, specifically seeks out and targets lymphocytes with that CD-20 antigen (the CD stands for “cluster designator” as the CLL lymphocytes grow in little clusters of identical clones in the lymph nodes) and continues to reduce their numbers.
I should have a rebound in my counts shortly, as those stem cells which weren’t killed off will be recovering and starting to make more white cells again, both of the good and bad varieties. I’ll find out how much of a rebound on Monday when I get my next CBC.
Sorry to be so didactic, but there are folks out there who crave these details. Steve, a good friend from Denver and the husband of one of my patients, said “And I always appreciate the technical descriptions along with the narrative-- it must be the engineer in me.” And Monica, also from Denver, said, “It's kind of like attending an online college course in the study of leukemia, without the exams and tuition!!” Hmm…is that good or bad? Monica and her husband Don used to bring me no-beans red Texas chili when I got sick back in 2002, and good stuff it was. It was made according to a recipe used by Don’s sister, Cindy, who tied Bobby Flay, of Food Network fame, in a televised chili cook-off not too long ago (she markets her spice mix as “Cin Chili” and it’s available at Central Markets in the DFW area and, of all places, Cosmic Chili in Bozeman, Montana, if you’d like to try her stuff...and you should!).
Speaking of didactic, I want to tell you a little about what some of the numbers I’ve been throwing around mean. I’ve mentioned that my white cell count, which includes all the varieties of white cells, was about 90,000 before we started the infusions. What that means is that in every cubic centimeter (CC) of my blood, a volume about three-eights of an inch square, there were 90,000 white cells. About 90% of those white cells were lymphocytes, so I had about 81,000 of them per CC of blood. Now, three weeks after the infusions, there are but 700 lymphocytes per CC of blood, so remarkably have the drugs sought out and specifically killed them. We’ve taken out about 97% of all my white cells, and over 99% of my lymphocytes, the great majority of which were CLL cells, but have “only” taken out about 75% of the other, normal kinds of white cells. That’s the great news. But it’s also the bad news in a way. Those normal lymphs that are being taken down…well, they make my antibodies. That’s another reason I’ll be at some risk for many months to come, even after we conclude my current round of drugs.
Meanwhile, Kathy has managed to keep me healthy with her crazy ways. I’ve told you about her wearing masks when she cooked, and spraying down the tub after she used it because she had a little cold. Well, last week I noticed a strange “scent” in the air, kind of an antiseptic smell. I tried to place it but couldn’t so asked Kathy what it was. Well, she admitted that she’d sprayed the bed down with Lysol to try to kill off the viruses she was shedding. She’s a little crazy, but, man, is she dedicated to keeping me well.
I came across a little article recently titled “Treating CLL: Optimism Not Required.” In the article it says, “Contrary to popular belief, there is no evidence that an optimistic attitude leads to a better cancer outcome. In fact, insisting on a cheery disposition when someone is struggling with a scary disease may actually do more harm than good, according to a leading psycho-oncologist.” Now, first of all, have any of you ever heard of a “psycho-oncologist?” It gives me the mental image of a guy in a white lab coat walking around the Bates Motel with a long knife in his (or her, ‘cause I’m not sexist) hand. This guy goes on to say, “The flipside of believing a smile can banish cancer is believing that a frown can cause it.”
I’m glad to hear that, because when I first found out that I had leukemia and that there was no cure, I was determined to go about my life in a way that no one would be able to tell I was sick. I was going to smile, keep up with my work, not complain, and I was going to beat the disease. Yeah, I was going to be the first! Everybody who gets cancer thinks that way, that they’re going to beat the disease even though millions of people before them, good folks with great attitudes and work ethics couldn’t.
But things didn’t work out that way. The first thing was the depression that can overwhelm you when you have found out that you’re going to die in a finite period of time. We all have an image of our life going on out before us in a path that leads to an ever-receding horizon, one we’re never going to get to. But when you get the diagnosis of cancer, especially one with no known cure, suddenly there’s an earthquake in front of you and the earth falls away, leaving you facing a cliff. And you can’t stop advancing towards it. Each day the edge of the cliff gets closer. I put my fears about this into a message to my family and friends in August of 2002.:
http://adventureswithleukemia.blogspot.com/2002/08/reality-of-leukemia-fear-and-sorrow.html
I couldn’t escape the depression. And in time, I found I couldn’t escape the effects of the disease and its treatment. I became weakened because of the disease, the drugs, and from the emotional toll of dealing with a lethal illness. But I didn’t want to wimp out and give up. I kept going on and on and on until it became dangerous for me to try to practice medicine, something I’ll talk about in another message. Now I find out, from this psycho-oncologist, that trying to keep a positive attitude wasn’t required and neither did being depressed hurt, at least in terms of progression of the disease. Sometimes it’s hard for Type A people to just give up and not be in charge of things, especially when they have no control over what’s going on anyway. But it’s been easier for me since I did just that. I gave up control of my disease to my docs and gave up my job because I couldn’t control the effects CLL was having on me. And I’m better off for having finally done so. Thanks, psycho-oncologist, for excusing my failures.
Say, I heard recently that Avastin has now been approved for use in breast cancer. And hopefully we’ll find that it works for CLL as well (though we won’t know that for some time). The more uses it gets approved for, the more the stock in its manufacturer is going to rise. And at $30,000 a dose, they may make some money. Hey, Genentech is calling to all you investors out there!
I heard from my step-brother/cousin Tom recently. He and his wife have retired to The Villages down in Florida. “Disneyland For Old Folks,” he calls it. He just checked in to brag about their weather and say that they’d been out in the car with the top down. Oh, yeah, he also said he didn’t really want to hear about how many tax dollars I’d been using up.
And our former neighbor Tom in Highlands Ranch, Colorado also checked in. He made an interesting offer. I’d mentioned that he had mowed my lawn and taken care of things for me while I was out of action with chemo in the past. Well, he offered to mow my lawn all the time if I’d move back to Colorado. Well, now. Maybe I can start up a bidding war or something. Say, how many of you folks here in Texas would match his offer and mow my lawn, and also, say, take out the garbage every week if I don’t move? Tom also sent another note with a more serious message. “I am really glad you are doing this for your posterity, this, your journal and genealogy will be a legacy for eternity. I mean that sincerely, it is a gift of love that probably won't be fully appreciated by your loved ones for some time to come, but trust me, it will be cherished and more than any other thing or inheritance that you might leave.” I agree with Tom, and I think all of us should write down something of our lives for our families and those that come later. I wish my dad had written down his tales of World War II. In fact, he told some stories so many times that we didn’t want to hear them after a while, but now he’s gone and we didn’t write anything down so the stories died with him. I guess that gives more ammunition to Bonnie who wants me to write that book (and a lot of you out there agree with her). But who would publish it and who would buy it?
Martin checked in to say he was in Austin for a marathon and was reading my letter on his phone. He and his brother Neil are techno-geeks and are always checking their Treo phones or their laptops for e-mail, sports news, or whatever. That reminds me; Martin’s overdue for his pap smear.
We also heard from Clovis and Phil, who were our hosts at their beautiful Alaska Wolfhouse B&B in Juneau a couple of times. We went there to recover from my stem cell collection in March 2004. Wow, Alaska in March with a bald head! Cool…literally. Some of you who have been around my scribblings for a while may remember Phil as the guy who threw his typewriter out a third floor window while in a college course. We related that episode to my problems adjusting to the addition of computers to our clinic in Colorado; I was known to damage a few keyboards and mice out of frustration. (See DGA Humor, March 11, 2004) They were wonderful, accommodating hosts and are doing well in retirement up in the small town of Connor, Washington. On our first to Juneau I found I was in good company at the Wolfhouse, as there were two other folks visiting at the same time, both with incurable cancers. Mary Lou had recurrent breast cancer and Judith had primary peritoneal cancer, a malignancy that looks and acts like ovarian cancer, but occurs in women who no longer have ovaries. I have found that, when faced with incurable disease, a lot of folks start taking care of items on their “bucket list,” as the list of things you always wanted to do before you died is fashionably called of late. Going to Alaska seems to be high on many folks’ list. Anyway, both Mary Lou and Judith fought and fought with incredible bravery, but both succumbed to their disease within about a year of our meeting. Mary Lou wrote about herself in verse, and I was getting Judith’s on-line journal fairly regularly. Judith was remarkably upbeat despite her dire circumstances, but I could tell by her descriptions of what was going on that she didn’t have much time left. Then the messages stopped. I guess, as doctor psycho-oncologist noted, a positive attitude, in and of itself, won’t keep you alive. If it would, these two brave women would still be writing.
I didn’t mean to end this on a downer, but I guess I will. Sorry.
Let me close by telling you that I’m already wondering if we can possibly complete all planned six cycles of the new chemotherapy. I pointed out that we’ve already destroyed 97% of my white cells. If the next round destroys another 97% of what’s left, I’m going to be left with not much of any white cells at all. Back in 2002, we stopped after four of six planned rounds of the FCR regimen (without Avastin) because my counts were very low. Well, we’re almost at those same levels already with only one cycle this time. The folks at MDA have told me on at least a couple of occasions that they wouldn’t have stopped when we did back in 2002, that they would have been more aggressive. I guess I’ll find out in the coming weeks how aggressive they want to be and how far we can take this process. Enough for now.
Stay tuned.
Mascot Dave
dreck@prodigy.net
PS: Please take a few moments to look at this link:
http://www.youtube.com/watch?v=_tIyt8oSLVs
and think what you would be saying during this talk.
(Thank you to my good friend Cesar in Miami for this wonderful message)
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