Dave’s Great Adventure, Book Three
Chapter 4, Verse 1
June 2, 2008
The infusion chairs you sit in, recliners really, are institutional and very functional and they’ll never be mistaken for your basic La-Z-Boy. They are clad in hospital-standard, light-green vinyl, the vinyl making it easier to clean up spills and stray body fluids. Each chair has a “wing” or small table at each arm, on which the nurses place supplies while starting IVs and initiating chemotherapy infusions. You can also place a drink on the “wing,” or perhaps your lunch if you’re there for a long infusion.
The reclining chairs have three positions; sitting, feet up and full recline. Most of the time you sit in full recline because the medications you’re given make you feel drowsy or sick, or perhaps both. At full recline your view of the world is stark. There is an off-white, rather light gray wall to your left. Overhead are standard gray-mottled acoustic ceiling tiles, about eighteen inches square. Some are stained with old water leaks, probably from the sprinkler system they hide. And there are fluorescent light fixtures, also about eighteen inches square, mixed in with the acoustic tiles and the occasional HVAC vent. The textured plastic covering the light fixtures contains a scattering of dead insects which have gone on to Bug Valhalla while searching for the source of the light.
And on your right there is a gleaming stainless steel pole, entering your field of vision from below and ending above you. The pole has a cross member at the top, with a hook at each end. From the hooks dangle several smallish clear plastic bags with labels on the far side which you’re unable to read. The bags have tubes which drop down and join other tubes which join yet other tubes leading out of your field of vision. You can’t see where they go, but the chill in your hand which you feel all the way up to your shoulder leads you to believe that whatever is in the bags is going into your arm. The fluids look benign.
The infusion room at the Texas Cancer Center-Denton is an elongated, squared off “C” shape. It’s about ten feet across the top, perhaps fifty feet along the west side and eighteen or so feet across the bottom. The open ends of the “C” are further squared off with walls about ten feet in length. The room is on the northwest corner of a generally northwesterly oriented rectangular building just off Interstate 35E. The wood paneled nurses’ station partially fills the jaws of the “C.” Distributed around the walls of the room are eleven identical hospital-green infusion chairs, all facing inwards toward the nursing station. I think that’s an unfortunate orientation because there are five windows along the long, westerly facing wall and another on the short northern wall. I’d rather be looking out the window at the crape myrtles, the sky and the birds than away from the outside view. In Denver all the chairs in the chemotherapy room faced away from the nursing station, towards the windows on the tenth floor of the building, giving great views of the Denver skyline. But here they do have eight televisions mounted to the ceiling for entertainment. Fortunately they are all muted, so that you don’t have to listen to the cacophony of eight televisions, each trying to out-volume the rest. There are headphones behind each chair which allow you to hear what is on the screen above you if you have any interest at all in the daytime television offerings.
I like to sit in the chair in the upper right corner of the “C,” and since we’re always early, we generally have our choice of chairs. It’s a bit out of the flow of traffic and gives the feeling of being a little quieter, but it’s hard to know if it really is. It seems like most of the folks who come here also have their favorite place, as we see the same folks in the same chairs at each visit, month after month. The folks who join you in the room come in all shapes and designs. Many are older, as you’d expect in a cancer clinic, but there are too many younger people as well. There was the guy in his early thirties, a quietly resolute look on his face, getting an infusion while his wife was looking through dozens of photocopied pages of material, trying to find the latest in treatments for his disease, I imagined. And another young guy, also early thirties, who always sits in the lower left corner of the room. He has a bald head, always covered with a ball cap. I asked him once, when the room was almost empty, what he had. “Cancer that has spread to my lungs,” he said vaguely. “What are you getting?” I followed up with. “Chemotherapy,” he responded. He apparently had no idea where the cancer had come from, and really didn’t care to know what he was getting, which I found to be simply amazing, since I want to know, with every infusion, what’s going in and how much of it. I’m probably a big pain in the ass to the nurses.
The room starts out empty, but generally by mid-morning every chair is occupied and often they’re using an overflow, single-bed room around the corner from “my” place. But by mid-afternoon, it’s almost empty again. We see the entire flow and ebb of the crowd while I’m there on my Day One, when the infusions take eight to nine hours. During this time I’m generally reclined most of the time, often dozing. Meanwhile Kathy is sitting in a thinly padded straight chair next to me, reading. I don’t know how her butt takes all those hours of just sitting. That’s more time than it takes to fly to Germany! But she’s been there with me, and for me, for every round of drugs I’ve ever done. Meanwhile lots of folks come in all by themselves. I feel badly for them. It seems like when you’re fighting a malignancy and getting drugs that are going to make you feel sick, someone should be there for you.
Some people dress up, like the lady in the striped dress and the pearls. Others, most people, just wear everyday stuff like jeans and T-shirts. But there are folks who look like they just came in from the fields, perhaps farming or something, and probably that’s exactly what they were doing. Some folks look homeless but have attendants with them. And there’s a doctor who comes in wearing his scrubs. I don’t know what he has.
Probably eighty percent of the patients around the room have infusion “ports” buried under the skin of their right upper chest, below their collar bone. It makes it easier for the nurses if the folks have ports because they don’t have to start IVs on them. Most folks pull down their collar or unbutton the top of their shirts to allow access to their ports, but there’s the great big guy who sits at the bottom of the “C” who wears T-shirts that don’t have enough slack in the collar to be drawn down to the level of the port, so he sits for hours with his shirt pulled all the way up to his neck, exposing his massive and not particularly attractive belly to the entire room. And he doesn’t really care.
I watch the goings-on in the room, but I don’t hear anything. I see the nurses approach the other patients and their mouths move, but there is no sound. The earbuds from the MP3 player are in place and it’s as if I’m watching a movie with a musical sound track of classic rock. As I look around the room, it seems surreal. I shouldn’t be here. Sick folks come here, not me. It’s just a movie; maybe a dream. They give me the pre-meds and I start to feel woozy and go into full recline. The stark view of the world returns. There are the multiple clear plastic bags, still hanging there on the cross-member of the gleaming steel pole. They look like they’re filled with water, but I know they’re not because the nurses wear gloves just to handle them, so toxic are they. They smile at me pleasantly and adjust the bags and the tubes. And they put the stuff into my veins! You know, I thought I had a pact with God. I’d go into the profession of curing disease and saving lives and He’d protect me from all this death and disease stuff, right? I shouldn’t be here. This place is for sick folks. And my arm gets cold from the clear fluids running into it. I pull up my green TNT blanket and close my eyes.
And so I went through Round Four of my chemotherapy, the fourth of six planned rounds of infusions, after the folks at M. D. Anderson looked me over and said my lab reports were right where they wanted them. This round went quite a bit better, at least initially, than the last one. In April I was sick and had a horrible headache by the start of the last day of the drugs, day three. It was the kind of headache that makes you hold you head absolutely still and makes you feel like you’re going to vomit. I had mentioned this to Alice, the Protocol Nurse Practitioner who evaluated me in Houston. “Zofran,” she responded, referring to the anti-nausea drug I’d been getting. “Huh?” I said. “Yeah, Zofran can cause that. Let’s try you on Kytril or Aloxi instead,” she said, rattling off the names of anti-nausea medications I’d never heard of and that probably hadn’t even been developed when I had to retire a few years ago. It turns out that I had been getting high doses and high concentrations of the Zofran. I didn’t know. I always ask about the doses of the chemo drugs they give me, but had never asked about the amount of Zofran, figuring I was getting the same doses I gave my patients years ago. So it turns out that some of my worst side effects were side effects of the drug I had been getting to minimize other side effects. Does it get any more ironic than that?
I got through the three days of drugs, the days again being long to start out with, at eight or so hours, but getting progressively shorter and I completed the infusions without the standard headache. That didn’t come for a couple more days, but wasn’t as bad as previously and didn’t last as many days. I thought I was doing pretty well, not feeling too awfully sick or anything, and got through the three days of infusions and into Thursday just fine, but then Friday sneaked in and hit me in the back of the head with an aluminum softball bat, you know, the ones that go “Ping!” when you hit something, and I didn’t really come to until Sunday Afternoon dropped by for a visit. I don’t recall ever being so tired after a round of drugs. I was laid low, lying around the house sleeping, sleeping on the lawn chairs on the patio, sleeping in front of the TV. I could rouse long enough to eat a bit, but that’s about all I could get myself to do. I was completely wiped out.
It’s now been a couple of weeks since the drugs went in and I’ve slowly come back to a more functional level but it’s been a slower recovery than before, I think. I just suspect that the cumulative effect of the drugs is taking a toll on my elderly body and that it will continue to get a little worse with each course. But I only have two more to go! I really am tired of feeling this way, though.
The other side effects are about the same. I have the body aches which get bad after each infusion and which slowly, very slowly, get a little better until I get the next dose of Avastin. Larry, our friend who is also getting Avastin still has aches and pains with his chemotherapy, too. I find that large doses of ibuprofen help a lot, but the problem with that is that I start getting bad stomach pains if I take too much, because the Avastin also causes a stomach irritation and pains. Larry ended up in the emergency room at M. D. Anderson during his first rounds of therapy because of severe abdominal pains which turned out to be essentially a very bad case of heartburn. He’s now on Nexium, I’m on Prilosec, both being acid-reducers. Also, we both get a bit hoarse and “squeaky” after each round. The, uh, “concreting” effects of the Kytril are just as bad as those of the Zofran, so that’s still an issue. And I’m still slowly shedding, probably because of the Cytoxan, but still nowhere near bald like I was a few years ago.
My blood counts have been amazing. Logically, you would expect them to be getting lower and lower with each round of drugs, like they did after my first series of infusions back in 2002. But the lowest my white cell counts have ever been during the current treatments was in the third week after my very first round of chemotherapy. They remain low, between about 1,200 and 1,700 or so, but stable. This week, my “nadir” week, my counts are actually slightly up from the numbers last week. I can’t explain it, but I guess it’s okay. My clotting cells, the platelets, are holding steady at a low but sufficient 60,000 to 80,000 and my red cells are low normal at 34%. And I finally heard about the results of my bone marrow biopsy, too. It showed less than 1% leukemic cells in the marrow, so again it seems like we’re doing something right. Hopefully after six rounds of drugs they won’t be able to find any of the bad guys in there, at least for a while.
Our friends Lou and Joan, from Golden, Colorado, continue to send almost daily greeting cards and e-cards, and have made me laugh even on some very bad days. Thanks again, guys. They have signed up to do a marathon with the TNT in October and have dedicated their efforts in my behalf and that of many folks like me. I think I’ll attach links to their donation web pages if any of you would like to help them out. Please take a look and see what you can do. They’ll thank you and so will I.
And I think that’s enough for now. I’ll try to get another update out within a week or so.
Bye now,
Dave
dreck@prodigy.net
“The worst thing that happens to you can be the best thing for you, if you don’t let the worst thing get the best of you.” --Unknown
Lou’s donation page: http://pages.teamintraining.org/rm/denver08/lhenefeld
Joan’s donation page: http://pages.teamintraining.org/rm/denver08/jhenefeld
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