Wednesday, August 21, 2002

Chapter Two: The Rituxan

Dave’s Great Adventure
Chapter 2, Verse 1
August 21, 2002
The Rituxan

Sorry about that last letter. Kathy said I’d make people cry, and I guess I did, From our 15 year-old niece, Kelsey, in California, to my 82 year-old Mom in Iowa, and lots of other folks, I heard about tears. I wept as I wrote it, and Kathy did some crying as she proofed it for me, too. But I wanted to record , at some point, what I felt and went through during the early course of the disease, as I got the bad news. You can almost make out the stages of grieving in the letter: denial, anger, despair and acceptance, or whatever the hell those stages are (I never really learned them as I’m not much into psychiatry).

I just wanted to record what I felt like and what I wanted and needed to do as I learned of what I had, as they are things we should all be thinking about anyway, whatever our ages. Not just the wills and such, but the extra hand-holding and hugging. We really don’t know what tomorrow may present us with, do we?

Last week I really felt completely normal and healthy so I was able to work a bit in the clinic. Since I was supposed to be at the trial of the hit-and-run, which would have been Monday and/or Tuesday, I didn’t schedule myself for those days ( I actually scheduled the start of my chemotherapy so I‘d be in week four, and presumably recovered, for the start of the trial), but was able to get in half days the rest of the week, and then this Monday morning too. It was great to be back in the clinic and to be around my friends. I was disappointed that we were not able to schedule more of “my” patients into the time I had there, but I suppose it was unrealistic to presume that a lot of folks would rearrange their schedules to suit mine. However, I was able to see a bunch of ladies and do their checkups and such, probably at an earlier time than if I hadn’t been there. Monday was better in terms of seeing some of my own patients as I saw about four or five of the women I’ve been seeing for their pregnancies or whom I’ve been seeing annually for several years.

I was feeling so well this weekend that I tackled the cactus in our front yard. Years ago we planted little sprigs of cholla cactus along the sidewalk that leads to our front door. Well, they get a lot more water there than most cacti do, and are loving it! One has gotten so large it hangs over the sidewalk accosting all who attempt to enter. Fearing a summons from a rogue lawyer, I cut it back a couple times a year, most recently just last spring. But it was too large again so I got aggressive with it, and, at the same time, with a nearby prickly pear cactus as well. The cactus are beautiful when they bloom. The cholla cactus (which looks like branching inch-thick sticks covered with sharp spines) gets the most remarkable deep magenta colored blooms whereas the prickly pear (which is the kind with the more cactus-like oval flat pads that grow in a branching pattern [for those of you who live in Iowa or Georgia and are unaccustomed to the ways of cactus]) have beautiful yellow blooms. Of course, cactus blooms by their nature are transient. They bloom for, at most, six or seven days a year and then are gone. But the cactus are worth the trouble at least for those few days.

That night we went to eat in the home of one of my colleagues, a nurse named Christine. She and her husband had us, and Lou and Joan, over for fondue. In this family, Brian does almost all of the cooking. Kathy is getting ideas, thinking that this is a good deal. Brian even bakes his own bread, and it is excellent! We stayed there until about midnight, which is the latest we’ve stayed up since we started this chemotherapy stuff.

Sunday was interesting. We (okay, I mean “I”) got up a bit late but made it to church for the 11:00 service where we found the sermon was titled “This Precious Sip of Life.” The name comes from a line in a Dave Matthews song and the subject was how fleeting life is. The sermon featured a film clip of “Wit,” a play about a professor dying of terminal ovarian cancer who has decided that it is better to be kind than to be smart, now that she has more perspective on life. Then we heard the whole Dave Matthews song “Pig” from which the above lyric came. Man, these Methodists are right up-to-date with the multimedia thing! And, of course, the topic was all too appropriate.

After church we went to my favorite local barbeque place for lunch, but I wanted to get information on their catering services too. I’ve decided that, since I, too, have more perspective on life, and can see my “event horizon” approaching slowly, that I want to tell someone about my other great adventure, my “vacation” in Vietnam. For decades Vietnam vets have been looked upon as losers, druggies, and baby-killers. I’ve not shown my slides to anyone outside the family except to other Vietnam vets. I think that, before I go, I want to tell my side of the story and show what I was doing there. I’m calling this party my “Stayin’ Alive” get-together and noted on the invitation that once my guests have been enticed inside to get the free food, I’m going to lock the doors and subject them to all my pictures from Vietnam!

Well, I called this verse “The Rituxan” so I guess I should tell you about it. In short, it went well. I was to start the rituximab at about 10:00 and had been told the infusion would take about four hours. Hmmm, that seemed to exclude the possibility of a lunch. I called the clinic to inquire. “Since my infusion is to start at ten, and will last four hours...” “No, it will be five hours,” I was corrected. “Okay, five hours, am I permitted to bring along a snack or something?” “Yes, bring along some food, and get well-hydrated before you come in.”

Now, we know when the doctor’s office says it will be five hours, that they really mean six or seven hours, don’t we. We packed for an overnight. Sandwiches, chips, cherry tomatoes, banana, candy, CD player, CDs, books, magazines, change of underwear and more. Okay, not the underwear.

My doc didn’t get back from rounds at the hospital until about ten, so we were behind schedule from the beginning. He was very pleased with my response to the Fludara and Cytoxan. My numbers from the previous day were even a bit better than those from my nadir two weeks prior. All the good cells (red cells, platelets, neutrophils) had increased in numbers and the lymphocyte count had dropped a bit more, to 4,600! Good news. I tried to get a vague idea about how long he REALLY thought I had (like I told you I would) but he was "weaselly" like all doctors. (note: a weasel is another North American mammal that is, I guess, hard to catch; lawyers and people who are evasive are called “weasels”). He did allow that he thought I would have more than the average six years, but he said, and this is really true, “We’re writing the textbooks now!” In other words, we don’t really know how this stuff (the new combination I’m on) will work in the long term. As of right now we only have about 24 months’ experience with it. We really don’t know if or how long it will work to hold off the disease. I guess we’ll play it by ear.

So we went into the infusion room with our two suitcases full of food and stuff. Maybe they were just carry-on bags. Real small ones. My nurse was a gal named Marliss, who, it turns out, was a “neighbor” when we were about six years old. She lived in Heidelberg, near the old castle, on Badenburg Strasse, while we lived just across the river from the castle. Seeing her allowed me to speak just a little German. Anyway, Marliss started the IV for the Rituxan infusion. But before giving me the drug, she pre-medicated me with a few other items. First was plain old Tylenol (acetaminophen). Then she gave me doses of diphenhydramine (Benadryl) and cimetidine (Tagamet) through the IV (I’m spelling out some of this stuff because one of the people getting this works at a cancer institute in Germany). Both the benadryl and Tagamet are histamine receptor blockers which is important to use in combination with the Rituxan, to block reactions caused by the Rituxan. While she started the infusions of the pre-meds, I started reading and eating my lunch, since by now it was past 11:00. Kathy ate her lunch also, and got out a cross-stitch project we’ve been working on for a few months, a quilt for our second grandkid, Brooke.

I opened a packet of stuff I’d been sent by the widow of the dead bike rider (his name was Howard Rommel and he was related to the famous General Erwin Rommel from WW II). I had met with her a few weeks after the death of her husband, since she had not been present at his death. I have found that when people lose a loved one they often crave details of the death to know more about what happened. I told her what I had seen, that her husband was in no way, as far I could see, responsible for the accident. She told me she had been given copies of the other witness statements and asked if I’d be interested in seeing them. I said “Sure” and left it at that. A couple of weeks later a thick envelope appeared from her. I thought about it, decided, with brother-in-law/lawyer Bob’s (but he’s not a weasel) advice, that I probably should not open the packet and contaminate my recollection with the information from other witnesses. So, until the kid took his plea last week, the packet remained closed. I opened it for the first time there in the infusion room. Light reading!

The witness statements were, for the most part, supporting of each other, no real surprises. The kid has some sort of a learning disability, and when first confronted about the incident, claimed he had hit a cat! Then he said that Rommel was swearing at him and flipping him off (I don’t know the German equivalent, but it involves raising the middle finger), things I did not see. Anyway, while I was reading this stuff, the Benadryl kicked in and I was loopy and found it increasingly hard to talk or concentrate. About this time Joan, who had been in the building for a meeting, dropped in for a short and much appreciated visit. When she went back to her meeting I put the reading material away and got out the DiscMan. I put on another CD my brother Dan had made for me, this one by Sarah MacLachlan, and went to sleep. I was interrupted periodically by the infusion pump beeping, as Marliss steadily increased the infusion rates, but soon it was all over. Total elapsed time; about three and a half hours! That was a quick $1500 (about what the 750 mg Rituxan costs)!

So we repacked all our stuff and headed home. I felt tired, achy and weak. I took some more Tylenol went almost straight to the hammock with the DiscMan. Three hours later I woke up and looked in through the window of the family room. Kathy was looking out, at me. A couple of tears were in her eyes.

I came in, we had dinner, and we watched some History Channel stuff. I talked to Jen and Jon who called to see how I was doing, and then I went to bed early. I didn’t have any “homework” this time (you know, the excreting) so I got to sleep most of the night. I didn’t get up until about nine, and we prepared to go in for today’s round of Cytoxin and Fludara which started at about 2:00. But I’ll spell that out later. This has gone on long enough.

So until the next chapter in this adventure, I’ll sign off.