Contrary to popular myth or expectation, I'm not dead. I've just had a pretty busy couple of weeks. No,
busy isn't really the right word. Unpleasant comes closer to the truth.
WEEK ONE
Here we have five days of chemo, a combination of etopacide, cisplatin, and cyto-something. I don't remember the third drug. One day of chemo isn't too unpleasant, but five days in a row? It has a way of piling up, in the same way that one day's worth of dirty laundry is nothing too harrowing, but a five-day pile of dirty laundry starts to get kind of daunting.
The chemo brought the usual run of unwelcome visitors, like fatigue and intestinal distress, but it also brought a
grande-sized helping of nausea. During the ABVD protocol I did my share of vomiting, but I probably threw up more on the five days of this protocol than six months of ABVD. And it's hair-trigger vomiting too, with very little advance warning.
Five days of chemo is a lot. It's what a friend of mine used to call
e-goddamned-nuff. WEEK TWO
Now the fun really started. On the fifth day of chemo I started to get sick from something else. Nobody did any cytological studies or anything, but it was probably a virus of some sort, perhaps egged on by the disordered nature of my immune system. My symptoms began with dizziness, confusion and something akin to stupor, followed by crippling abdominal pain and the most spectacular diarrhea I've ever heard about, read about, or experienced. At times I was busily ejecting fluids from both ends of my body simultaneously and I didn't know which end would be most profitably aimed at the toilet.
For several days I couldn't even read. I was so confused and disoriented that I couldn't make sense of words on a page. I'd look at the words, they would confuse me, and I would become kind of angry. Then, as often as not, I would become nauseated.
I stopped eating and drinking, and since my body was enthusiastically jettisoning fluids from both ends, the result was severe dehydration. By Wednesday I'd gone about five days without eating anything and had lost so much water my arms, legs and face were developing a gaunt, bony aspect that I should have found more troubling than I did. We went to see the inestimable Dr. Adoo at the oncology clinic on Wednesday and I could hardly walk the fifty yards from the door to the office, and for all practical purposes I simply gave out in his examining room.
They were going to transport me to the hospital when one of the nurses (whom I affectionately but privately refer to as "Madam Hooch") had the idea of tapping into my port for rehydration. They connected me to a bag of saline the size of a North Korean and presently I began to feel better. Another thing I remember is this conversation with the doctor:
"Are you taking Imodium?"
"Yes."
"How much?"
"As much as the box instructions permit."
"Double it."
Armed with fresh fluids and a doubled intake of Imodium, I slowly began to make progress against the virus. At first I couldn't sleep for more than a half an hour at a time and I couldn't take any pills that would make me drowsy because I had to be able to get from the bed to the toilet in a matter of a few seconds. Over time I could sleep longer, the pain receded, and I slowly began to stockpile some water in my system (it felt like I was drinking several gallons of water a day, but even that probably wasn't enough).
WEEK THREE
Back to work! That was bad. After being bedridden and dehydrated for a week, my muscles just didn't seem to want to work any more. My gait devolved into a laborious shuffle that reminded me of
The Carol Burnett Show and for whatever reason walking even short distances left me sweaty and winded. I lasted two hours at work the first day before I was simply overwhelmed by fatigue.
On Tuesday I was clearing out old voice mail and found two voice messages from the Banner Transplant team arranging an appointment for me at noon on Tuesday! Bugger! I tore out of work and drove like the wind to the hospital, where the only parking place I could find was about five hundred yards away from the door. I had to stop to rest several times on the way to the door, and each time reflected upon the windblown exhaustion described by Krakauer in
Into Thin Air. Is this what climbing Everest is really like? None for me, thanks.
By the time I found the transplant office, I was positively reeling from exhaustion. Fortunately all I really had to do in the appointment was sit and talk. More on the appointment later.
The rest of the week I slowly got stronger. Even day I'm not fully recovered. Walking is still a struggle and I tire out with great ease, but I still seem to be getting stronger. It's taking me much longer to recover from this than normal, but then again, I've never been sick in the immediate aftermath of five days of chemo either. All bets are off, apparently.
THE TRANSPLANT
The stem cell transplant is on. I was hoping to avoid it, but there is apparently no avoiding it. I met with the transplant people at the hospital on Tuesday, where they not only accepted me into the program but described me as an almost ideal candidate: relatively young, no major underlying health problems, and a garden-variety nodular sclerosing Hodgkin's that should prove easy meat.
The great thing about the program is that they have specialists on hand to do my worrying for me. I have a case worker who is responsible for all my scheduling and appointments. I have another case worker who is responsible for getting, filing and transferring medical records. I have a social worker who worries about my emotional readiness. I have financial case workers who worry about financial matters. My job, my only job, is to bear up under the procedure and get better. That's it.
Final scheduling of the stem cell transplant is not yet fixed, but it'll probably start toward the end of this month or the middle of the next. It's a 100-day process, most of which consists of monitoring and recovery. There is a roughly two-week period before the transplant where one undergoes tests and has one's stem cells harvested (they need 4,000,000 of my stem cells for this to work, by the way). Then there is a one-month hospital stay where they do the actual high-intensity chemo and the stem cell transplant. Then the rest of the program takes place at home, where one tries to rest and avoid contagion.
This means that I had to tell my boss that I can't work for six months. The transplant people said it's sometimes as short as four months, but six months is a fairly good general-purpose guess. My boss has been very understanding about all of this and simply said "Try to let me know a week ahead when you're going to leave." It's up to me when I want to stop working; I think I'll probably stop when my second chemo starts.
Here's the general process.
1. Undergo second five-day chemo protocol
2. Begin injections of Neupogen
3. Wait for stem cell population in the blood to peak
4. Harvest 4,000,000 stem cells
5. Complete various tests
6. Go into the hospital
7. Have a week of super-intense chemo that kills practically everything in your body
8. Have the stem cells reinjected
9. Stay in the hospital till the immune system starts to recover
10. Go home and stay home till the immune system recovers
11. Begin testing to see if the cancer is finally gone
12. I guess that's about it
So it's been a fraught few weeks for me - chemo, physical illness, physical incapacity, facing the reality of being out of work for six months, and confronting the reality of the stem cell transplant. None of it much fun. No indeed.
I really have to give appreciation to Jean, my wife, who really went above and beyond the call of duty in taking care of me when I was practically incapable of doing anything. Thank you, honey!