Monday, April 16, 2012

A Season in Hell - Mark Dery - Boing Boing

On the wall at the foot of my bed, a poster displays the Faces Pain Scale, a series of earless, genderless everymen arranged, from right to left, in increasing degrees of agony.1

"The faces show how much pain or discomfort someone is feeling," the caption explains. "The face on the left shows no pain. Each face shows more and more pain and the last face shows the worst pain possible. Point to the face that shows how bad your pain is right NOW."2 The blurb adds, helpfully, that your face need not resemble the cartoon visages in the Pain Scale.

It's August 2011. I'm lying in a room at New York-Presbyterian Hospital, waiting to undergo surgery for a small-bowel obstruction, an intestinal blockage resulting from postoperative adhesions caused by my 2008 surgery for my first small-bowel obstruction, itself the result of my 2006 surgery for a rare and virulent cancer. Abdominal surgery begets scar tissue. Which gives rise to adhesions. Which sometimes cause bowel obstructions. Which may necessitate surgery. Which begets more scar tissue, which...

I'm feeling nigh unto death, driven half-mad by my nasogastric tube, a tube running up my nose and down my throat, pumping a bilious green froth of stomach acid and half-digested goop out of my belly, into the canister behind my headboard.

(Few readers will know firsthand the horror of the NG tube, or, more exactly, of its insertion. Handing you a cup of water, the doctor prods a plastic tube up one of your nasal passages, down your throat and into your stomach, exhorting you todrink, drink, DRINK! to ease the tube's passage and suppress your gag reflex. The violation is over in seconds, but for those seconds the retching, suffocating nightmare is unendurably awful, like drowning on dry land. And for the days or weeks that the tube lives in you, like some parasitoid alien organism, you gag a little every time you swallow, the tube rasping against your throat.)

In my agony, I take some small comfort in knowing that the Faces Pain Scale is there for me, even if I don't look like a constipated mime.

In 2006, I was diagnosed with squamous-cell cancer of the urethra, a rare form of the disease. I spent that summer at the Memorial Sloan-Kettering Cancer Center, riding the sickening swells of a chemotherapy so toxic it left me limp and nauseous for the first of the two weeks between each session, poisoned by the cure that felt as if it was killing me.

By summer's end, it had shrunk my tumor, but not enough. Thus, my date with the O.R. at New York-Presbyterian—foreordained from the moment my surgeon saw my first MRI—would be more harrowing than I'd hoped. "Of course, it was dispiriting," I told my friends, in one of the periodic e-mail updates I called cancer-grams. "I had hoped that the tumor would shrivel up and die, nuked by the chemo." That said, I noted,

The most painful part of having my hopes dashed was the deadpan affect with which my Sloan-Kettering oncologist delivered the news that my chemo had failed, adding that, in his considered opinion, I should have my everything removed as an offering to the Angry God of Cancer, in the desperate hope that this thing will never come back. "Radical penectomy," he snapped, tonelessly. Then, without so much as a handshake, he swept out of the room, white coat flapping. That, I gathered, was the end of our doctor-patient relationship.

I'll always remember him as a man who put the "care" in "caregiver," with a bedside manner whose saintly compassion and twinkly-eyed avuncularity recalled Joseph Mengele at his best.3

Mercifully, my surgeon was as profoundly humane as my Sloan-Kettering doctor was bloodless. Dr. James McKiernan struck a delicate balance between an unfeigned compassion, leavened with a hilariously bent wit, and an unassuming mastery of his field. He was by all accounts preternaturally skilled with a scalpel. A radical penectomy, he reassured me with an eyeroll, would not be necessary.

In October 2006, Dr. McKiernan carved away my cancer in an epic operation. Since then, I've undergone MRIs and CAT scans at ever-greater intervals. So far, no bogeys have appeared on the radar screen; hitting the five-year mark without incident, as I have, means that the statistical likelihood of a recurrence is astronomically small—cause for celebration indeed, since of those patients who are favored, by the blithely cruel God of Random Chance, with my vanishingly rare cancer, 70 percent experience a recurrence. And virtually all of them are killed by it. This thing is a slate-wiper.

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