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.”