Tuesday, November 24, 2009

Time on Fire

As I mentioned a few posts ago, I've been reading Evan Handler's book Time on Fire: My Comedy of Terrors. Handler is an actor, maybe most recognizable as the bald lawyer in Sex and the City. That's what I saw him in, anyway, at about 3:00 in the morning when I couldn't sleep one night about six months ago.


Handler was 24 years old when he was diagnosed with Acute Myelogenous Leukemia, soon after having gotten a part in a Neil Simon play on Broadway. The book goes through about six years of his life, from the diagnosis, to the intense chemo he received, to his attempts to get his life back together, to his relapse and auto stem cell transplant, and eventual recovery. It's an inspiring book in many ways, an instructive book for sure, and a very hard book to read at times, especially for a cancer patient -- he's a playwright as well as an actor, and the detail he uses in some scenes certainly lets you feel what he's going through.


One of the main themes of the book is Handler's need to do for himself (while he relied heavily on others, and resented them for it). Handler names actual names -- he trashes certain doctors and nurses for the crappy way they treated him, and he has pretty much nothing good to say about Sloan-Kettering in NYC (unlike Johns Hopkins in Baltimore, where he was treated wonderfully).


He attributes much of his survival to his own pushiness, demanding that certain things get done in a certain way, and getting a reputation as a "difficult patient"along the way. But this is where it was most instructive. He tells stories of being in the hospital and having nurses aides take his temperature with glass thermometers (he was post-transplant, and prone to any otherwise harmless infection, so he had his own thermometer in a glass of alcohol by his bed). The aides kept the thermometer in for 30 seconds, not the 4 minutes that would give an accurate reading. They didn't want to stick around his room for 4 minutes, they told him. So he took his own temp and kept his own chart, letting the doctors know when he was getting a fever, a sign that he might have an infection and might need antiobiotics to potentially save his life. (The doctors, instead of insisting that the aides do a better job, told him to just keep his own chart, which they followed instead of the official chart).


I wouldn't expect everyone to do the kind of research I do on NHL, reading articles in medical journals, being up on which treatments are moving from stage II to stage III clinical trials, that sort of thing. But the kind of basic observation that Handler did, and the insisting on a certain level of care (and a certain level of compassion) seem like the kind of thing anyone can do. And should do.


The book is downright funny in lots of places -- Handler is a very good writer. Early on in his treatment, he describes his attempts to, shall we say, "get romantic" with his girlfriend; it was their attempt to celebrate life and not conform to people's expectations of a cancer patient. But he was also hooked up to "twenty pounds of liquids" through lines in an IV stand, and he describes the two of them getting tangled up in all of those lines as they are getting intimate in a bathroom, the on;y place they could get some privacy in the hospital. Very funny stuff.


But sad, too, especially as he gets into detail about the after-effects of chemo and the transplant, and the physical and emotional toll the experience took on him. Those parts were hard to read sometimes.


Isabel wonders why I read books like this, especially when they can be so hard. At one point, I said "Wow" out loud while I was sitting next to her, reading , and she asked what I was reacting to. I told her Handler was talking about getting a 106 degree fever. It's that kind of thing that makes her wonder why I read books like this. I told her, "Because he survived."


I read books like this because I'd rather know what's potentially in store. And if I haveto read about that kind of thing, I'd rather read about it from a survivor, someone who came through stronger.


One warning for anyone who's considering reading it: this is an old book, written in 1996. At the end, Handler points out that much had changed in those few years from the mid- to late-80's, when he had his transplant, particularly in ways that doctors were able to bring down the chances of fatal infection considerably. Can you imagine how much has changed since 1996, when he wrote that? Which is an even better reason to read it -- as bad as his experiences were, twenty years ago, we've come so far in treating blood cancers.

2 comments:

Anonymous said...

That sounds like an amazing book, Uncle Bob!

My most recent gut-wrenching read was 2666, very difficult to get through in parts--a main theme is the femicide in Ciudad Juarez--but a brave book for exposing an oft ignored, ongoing tragedy. I think that reading brutal books like 2666, and, from the sound of it, Time on Fire, help broaden and deepen our understanding of survival, and that knowledge can be power that we draw on to survive.

Much love!

Julia (PDX)

Lymphomaniac said...

Julia,
Amen to that.
Nice to hear from you. Have a happy Thanksgiving.