Happy: A Quest for Life After Death

Monday, July 21, 2008

All that and a bag of ... shingles?

So it's been a rough week. The truckload of side effects from the first infusion of Torisel really hit on Wednesday, when Mat didn't get out of bed until 5 in the afternoon. Things gradually improved over the rest of the week with the chemotherapy side effects -- Mat's getting more adept at managing the nausea and fatigue -- but a small rash on his leg got much worse.

Mat went in for his second infusion of Torisel today, which seemed to go well. The weird part of the day was the rash, which now covers most of his upper right leg. Dr. Ryan came up with some interesting possibilities (the "incredibly rare" necrolytic migratory erythema, which can be associated with neuroendocrine tumors, seemed to be the most exciting). Dr. Dave sent him to a dermatologist immediately after the infusion, who seems to have settled on a diagnosis of ... shingles.

A firm diagnosis is pending, until lab analysis of some tissue. Mat has pretty strong feelings about the collection of the specimens. Mat says:

The highlight of my day was definitely the x-acto knife. After savaging what he felt were the juiciest bits of my gammy leg with a series of alchohol swabs, our good doctor reached pleasantly into a drawer, retrieved a disposable x-acto knife and a small glass specimin slide (think middle-school microscope lab) and mentioned that the next step was going to hurt a bit. Things turned a bit surreal for me at that precise moment, my life warping suddenly into something Dali would have painted when feeling particularly imaginative. This was helpful I suppose, in that reality was not (and is not) particularly useful on a day like today. I'll write this one off and hope for a Pissarro tomorrow.

Then at home Mat somehow got a sharp particle stuck in his eye, where it remains despite repeated efforts to remove it. He's hoping the pus now oozing out of his eye (sorry to be gross) will help clear out the particle. He's now rocking back and forth in a corner listening to "Rocket Man" over and over (on his kick@$$ Bose headphones, a much-appreciated gift from co-workers that may have saved his sanity over the last year). "Rocket Man" seems to be helping him out of the dark place.

Should I tempt fate by asking the question? Oh the heck with it.

Could it get any worse?

Don't answer that.

Wednesday, July 16, 2008

Plan Z

After enduring days of pre-clinical trial insults including poking, scanning, blood-draining, and peeing in cups, Mat's body went on strike. It stormed off to sulk and refused to demonstrate the proper heart and kidney function indicators used to qualify patients for clinical trials.

In other words, it said "Find yourself another guinea pig."

This 11th-hour decision was after repeated assurances that Mat was likely to qualify for the trial, and despite my repeatedly pointing out that the remaining list of treatment options is so short as to be nearly microscopic.

Here, for your viewing pleasure, is the list:

1. Torisel: Kidney cancer drug with nasty side effects
2. Interferon: Nastier side effects than Torisel, and less effective
3. Adriamycin: Nasty old-school chemo drug that won Mat a free trip to the ER on the 4th of July two summers ago
4. Bizarre experimental procedure that can only be obtained in Switzerland (having already been tried in the U.S. and abandoned due to inconclusive results)
5. Brain transplant, to whip the heart and kidney function indicators back in shape

Mat has opted for Torisel, the comfy FDA-approved kidney cancer drug that includes rash, fever, weakness, nausea, and anorexia on its lengthy list of side effects. (Yes, you read that last one right.)

Mat was given his first dose via infusion on Monday, and did OK until today when he was hit by the whole truckload of side effects all at once. He was always taught to eat his green beans before dessert, so maybe with those items checked off the list tomorrow will go more smoothly.