The Two Kinds of Decay

The New Medicine

The first controlled study I took part in tested the efficacy of injected alpha interferon, an approved treatment for leukemia.

It was first-round research. And so everyone in the study — there were six of us — got the drug. There were no placebos.

I was excited about injecting myself with it.

I was excited until I learned that it was just a subcutaneous shot, not an intravenous one.

Years earlier, a doctor had told me a story about his internship at Bellevue Hospital in New York in the 1960s. During his rotation in Emergency, he was unable to find venal access in a patient whose arm veins were scarred from shooting heroin. So the patient said, Why don’t I just do it, and took the needle, and hit a vein on the first try.

For this drug trial, I was given several little vials of interferon and a handful of syringes tipped with very small needles. Maybe an inch long.

Three times a week for six weeks, I sterilized the top of one of the vials with an alcohol swab, drew 300 cc of the serum into one of the syringes, flicked the syringe to get the bubbles out, wiped down a spot on one of my thighs with another alcohol swab, grabbed the flesh on both sides of the spot and pinched it with my left hand, then with my right hand put the needle in as far as it could go. Then I pushed the plunger all the way down, waited a moment, withdrew the needle slowly, and discarded it in my big red SHARPS container. The whole thing took less than a minute. It wasn’t nearly dramatic enough that I could enjoy it.

On top of that, the side effects from the drug were the third worst of all the drugs I’d been given.

Interferon’s main side effect is described as flulike symptoms.

I remember my father standing in the doorway of my room as I shook with fever in my bed. He looked a way I’d never seen him look before.

I wrote this in my journal on October 3, 1995:

My father cannot look at me, and when he finally speaks to me, he does so as though he is speaking to someone on the verge of death — that is, on the verge of death, and we’re in a really bad play.

Each time I gave myself my shot, I wanted to do it in front of someone. Did I want parental approval, encouragement that even though the injections were easy, I was doing something hard?

I walked into my parents’ bedroom on those shot nights, carrying my works, and if my father was there, he’d get the look and leave. My mother stayed to watch the shot.

Twelve hours after my first injection, I was able to get out of bed. The worst of the fever was over.

But for six weeks had what seemed to be a bad cold and cough, and a slight fever, and the medicine didn’t do anything to help me stop secreting the antibodies, so I had to have apheresis all through the interferon treatment anyway.

And my data were removed from the study since so much of the drug had been thrown away with my plasma. On paper I hadn’t been on the drug at all.