Sunday, April 13, 2008

Spring Break!

Dave’s Great Adventure, Book Three
Chapter 2, Verse 4
April 13, 2008
Spring Break!

So, last Monday Kathy and I showed up at the clinic right on time, at 9AM, which of course means that we were actually late, because we almost always get where we need to be early. It’s been that way ever since we got married. We once got to the airport three and a half hours early for a flight!

Anyway, we checked in, got our paperwork and headed back to the “Infusion Room.” I went to a chair in the inner far corner which is a little more out of the way and perhaps a little quieter than the rest, and we set up shop. Whenever we go in for the infusions, we are prepared. The infusions take hours, so we have books and magazines, my MP3 player, my “Mascot Dave” blankie and my TNT (soon to be revised) cap to pull down over my eyes when I get tired. We were getting our stuff organized when a nurse we hadn’t met before came by and told us she was just waiting for the orders so she could get the drugs started. I asked about when the blood count was going to be done, as I knew my doc had ordered one to be done before the start of more drugs. She said I didn’t have one ordered. “Au contraire,” I said (in English, of course, because I really can’t speak French). So she checked with the other nurses and they agreed that I didn’t have one ordered. I asked if they’d check again and, indeed, they found that there was a CBC ordered to be done before the start of the infusions. So then I thought, not unreasonably, that she’d draw the blood. But she said that, no, it would be “quicker” somehow if I’d leave the infusion room and go wait in line at the lab. “Quicker” indeed! So I left, waited at the end of the line in the lab area (surrounded by sick folks, whom I try to avoid when possible) and after about thirty minutes got the blood drawn.

I returned to Kathy and my chair and waited for the results before the start of the infusions. And waited. And waited. After about forty-five minutes the nurse came back with the numbers and told us that there was a problem, that my platelets, which had been at 90,000 on the previous Thursday, only four days prior, were now at only 64,000. And that was a problem according to the folks in Houston, whom they’d contacted, because I couldn’t get the drugs unless my platelets were more than 75,000. So they sent us home to await further instructions.

We got home and sat there, wondering what to do. We had planned the whole week around the infusions and my recovery from them. Suddenly we had no plans, because as we left the clinic we were told we wouldn’t try again for at least a week. What to do? We could have decided to catch up on house cleaning or pulling weeds in the yard. Yuck! Instead, just like those loveable drunks in “Animal House,” we decided to go on a “road trip.” It was a nice idea, but not a good idea.

Kathy and I had been thinking for a month or more that it might be nice to visit Nacogdoches, Texas, where there is an arboretum on the campus of Stephen F. Austin State University. They have an azalea festival about this time of year, and when we found that we had a “week off,” we decided to take a short overnight trip out to east Texas. Nacogdoches is also the oldest town in Texas, they say, and has some historical sights, including a college building dating back to the days of the Republic of Texas, when Texas was its own country and not part of the U.S. Back then Texas was much larger than it is now and included what later became the panhandle of Oklahoma, most of eastern New Mexico, the southwest corner of Kansas, most of the Rocky Mountains in Colorado and a piece of the Rockies in southern Wyoming. Anyway, a trip to see the town and the flowers, especially after we’d been cooped up for so long, sounded like a great idea. I was feeling pretty good too, and wanted to get out.

Problem was, it turned out, I felt pretty good as long as I wasn’t doing very much. And just driving to Nacogdoches turned out to be “doing very much.” It was only about a 225 mile drive, and a nice drive too, but I was pretty tired when we got to town and needed to rest in our hotel room for a while before we could get out to see the arboretum. But later that afternoon we visited the gardens and enjoyed the exhibits, but found we had missed the blooming of most of the azaleas by a couple of weeks. After a couple of hours there I was really tired and we went back to our room. We never got out for the walking tour of the city which I really wanted to do.

The next day, on the way home, we took a little detour to Crockett, Texas, where my sister Diane lives. We had a beautiful drive through the Davy Crockett National Forest to get to Crockett, and then spent a few hours with Diane and her family, having lunch with her and her son Zak while we were in town. We then drove home. But by the time we got home I was just exhausted from the drive. And I was aching all over again, especially in my arms, back, neck and shoulders. The pain has persisted since the drive, too, and anything I do seems to make my joints hurt. And I thought I was getting better.

I’d been feeling quite a bit better over the last couple of weeks, not well, but better. Many of my joints still ached but not quite as badly. I heard from Anna again (of mud-wrestling fame) who was reporting on her husband, Larry, who is also getting Avastin. He’s getting his infusions at M. D. Anderson in Houston, and so they go there every two weeks, whereas I only get the stuff every four weeks or so. Well, after two treatments with the Avastin Larry reports that his joints are feeling achy as well. He says it feels arthritic, which is exactly what I was thinking, so I’m guessing that all these pains are caused by the Avastin after all. I had a few after my first round and many more after the second dose, just like Larry. Interestingly, the long list of side effects doesn’t mention joint and body aches very prominently. I suppose that when the “side effects” include bleeding to death, fatal bowel perforations, heart attacks, strokes, brain damage, kidney failure and the like, that achy joints don’t seem very important.

I have found that it’s primarily my small joints that are bothered by the drugs; my wrists, hands, ribs, spine and so forth. And it’s amazing how many small joints one has. You don’t think about all the joints in your wrist until they all hurt when you wash your hands, pull your socks on or push yourself up to get out of the bathtub. Or how many joints you have in your ribcage (everywhere a rib joins the sternum in the front and the spinal column, in back) until you lie down. Curiously, I think, the joints that have caused me the most problems over the years, my knees, are seemingly not bothered at all by the drugs, at least not so far.

The fact that I’m still aching and tired from the last round of drugs really makes me not look forward to doing it again, but of course I have to. In the past, I pretty much always felt completely recovered from one round of drugs before we started in with the next round. But now we’re about ready to go again and I still feel bad. It makes me wonder how much worse I’ll feel in the coming weeks. I’ve mentioned before that early in my confrontations with this disease I was actually anxious to get going, to do as much as we could to try to eradicate the disease. I wanted to do chemotherapy often and in large amounts. But now that I have finally come to the realization that the leukemia is not going away (permanently, anyway), I see the trials of the chemotherapy as another hoop I have to jump through before I get to the next hoop I have to jump through. I get tired of being tired, and now I’m tired of feeling sore all the time too. But, what are you going to do? Doing nothing is a death sentence and so you do what you have to do. Being tired and achy is my “new normal.”

After we got home from our little journey, we rested up for a couple of days. My repeat blood count which was done on Thursday was okay, with a decent neutrophil count and platelets up to 80,000. I figured it would be safe to go to the symphony, and really wanted to hear a concert since we hadn’t been to one in months. So we went on Friday night and things went very well. It doesn’t take much effort to sit in a concert hall listening to classical music. It’s quite relaxing, in fact. There was very little coughing going on in the auditorium and none at all near us. The concert was a very pleasant presentation of Beethoven’s Fifth Symphony as well as his Fifth Piano Concerto.

So I figured we could probably go to church, too, though church is, for folks like me with health issues, a little scarier. There are a lot more kids in church than in a concert hall, carrying lots more colds. And there is the custom in the Methodist church of greeting and shaking hands with everyone around you, something I try to avoid doing these days. But, we thought we could go and sit in the generally sparsely occupied balcony and be by ourselves. That didn’t work. When we arrived at the church this morning and took up residence in the balcony we were almost completely alone. But then a couple of families with small children came up to the balcony as well, taking seats right behind us. One of the kids had a nice, juicy cough. Kathy and I looked at each other and just with eye contact knew we had to move. So we got up and moved to the other side of the church and into relative isolation. I’m afraid we probably hurt the families’ feelings by leaving when they got there but I suppose it was the prudent thing for us to do.

I still haven’t heard anything officially from the Leukemia and Lymphoma Society corporate offices yet, but I’m guessing they really like the idea about changing TNT’s name. It’s probably just that they have to look at the overall costs of changing all the logos and such. Meanwhile we’re charging ahead with the process, though I noticed that Coach Neal erroneously sent out a memo to the team from the “TnT” coach. His wife, Becky, is doing better. In Dallas recently there was a marathon in which many of our team participated. The team got together to make up posters and Becky proudly proposed making one that proclaimed, “Go Big D TITs.” Can you believe they wouldn’t let her do it! I told her that there were always going to be folks who opposed creativity and innovation. Meanwhile, Kim (whom I’ve mentioned as recently having had a third anniversary of being free of lymphoma) was out doing fundraising for the team and was picking up fund raising items from both Bone Daddy’s and Hooter’s! That goes right along with the new theme, doesn’t it. She was doing it for Jane, our fund-raiser extraordinaire, who had arranged for the donations. And speaking of Jane, she has her own little fund raising scheme that she calls “Jane’s Jugs,” where she sets up raffles by selling tickets and collecting dollar bills in milk jugs, dollars that eventually go to the accounts of the runners on our team. You see where this team’s mind is? Coach Neal is a bit shyer than Jane, though, and can’t make himself mention it by name in his updates. He just refers to it as “Jane’s Politically Incorrect Fund Raising Plan.”

I recently mentioned the voice that kept making me, or at least allowing me, to eat everything in sight. Well, I’m apparently not the only person in the family who hears the voices. My brother Doug, who is a Ph.D. professor of sociology at Winthrop University, wrote with this confession. “I've heard those little voices for years. Mine say "You're a poor, overworked prof whose students don't give a rat's ass and whose colleagues are a bunch of whining, pinko low-lifes. Eat whatever you want! Afterwards, go kill a few of them and bury their bodies in the Dean's yard." My doc says with the proper medication I'll stop hearing those voices--but the voices are telling me to kill the doc first. My Dean isn't gonna be very happy!” Man, I think I need to see about sending Doug some Thorazine to help out with those voices!

ERRATA: Just like a famous/devious/popular/scheming/hardworking/persistent [pick any one or two] presidential candidate, I “misremembered” a few things which I mentioned in my last letter. No, it wasn’t about sniper fire. The last time I was under attack from sniper fire was in Vietnam in 1971, and I haven’t written about it in any books nor mentioned it in speeches. But I’m pretty sure I remember it actually happening. Hard to “misremember” sniper fire. But I digress, as I commonly do. My chemo-addled brain (at least that’s my excuse) recorded some facts incorrectly. Doug tells me that he’s not quite as hardy as I thought, because he doesn’t keep his thermostat at 60 degrees all winter. Actually, he told me they keep their thermostat at a temperate 65 degrees all winter. “We’re into conservation, not hair shirts….” he said in a message correcting my faulty memory. And similarly, Bonnie wrote to remind me that the message I got from her last winter, about it being 43 degrees in the house, was a one-time thing. Seems they had a new dog in the house and left the patio doors open that night to allow the new pet to get in and out. But they’re still pretty tough folks; when it gets down to 55 in Bonnie’s office, they turn the heat on with the thermostat set to 64 degrees. Bonnie probably just wants enough heat to be able to feel her fingers when she’s working at her computer or doing her artwork. Let’s see, what else. Oh yeah, in writing to Janet up in Colorado I called her “Judy” in my message. Arrgh! I hate when I do that! That’s all the corrections I can think of at the moment.

And so tomorrow morning we’ll get up early again, get to the clinic (early of course) and we’ll start Round Three. I’ll let you know how the infusions and the recovery go in the coming week or so. Thanks again for all your kind thoughts, messages and prayers. I’m truly blessed to have so many wonderful friends.


“Suffering ceases to be suffering at the moment it finds a meaning.” –Viktor Frankl, as quoted in the sermon at church today. The meaning, or purpose, for me is to find out if this stuff works, for all those folks who are going to come after me and will need a treatment for their disease.

Sunday, April 6, 2008

Ode To Neupogen

Dave’s Great Adventure, Book Three
Chapter 2, Verse 3
April 6, 2008
Ode To Neupogen

And here we
Go again,
Getting shots
Of Neupogen.

Sticking needles
In my belly.
Who devised this,
I mean…really?

Using needles
Helps good white cells
Come my way.

Expensive drugs
Make me well
Just enough for
Chemo hell.

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….