Friday, July 15, 2011

Diagnosis II: Say What You're Thinking

Dr. Shastri cut off the red bleeding pimple on my small right toe. She has not yet removed the one in the angle of the two smallest toes on that foot, the older, slower-growing lesion that has yet to burst. I don't think it will prove, oncologically, very different from the other one, do you? That, I believe, was on June 24. On June 29, she called with the news that it was Kaposi's sarcoma. I saw her briefly on July 1, long enough to peek at the report on the sarcoma lesion -- it was pretty conclusive. She said I should probably go to see a specialist at once, and if money was a problem go to the Bellevue oncology clinic. Screens and so on are cheaper there. She had already spoken to my regular physician, Dr. Isaacs, and he had recommended I call a certain Dr. Yancowitz at Beth Israel. I called Dr. Isaacs' office, too, and his secretary told me, "Dr. Yancowitz is the best person for what you have." Her voice sank to a near whisper. She sounded concerned, reassuring, professional.

Look, guys, it is 2011. It is not 1986. I am not a small child. I am not a hysterical youth. You can say what you're thinking. If you are thinking "AIDS," hadn't we better say it out loud?

We really should. Because meanwhile, on June 30, the day after Dr. Shastri called me with her bombshell diagnosis, I had gone to the Chelsea STD Clinic on Ninth Avenue at 28th Street for an HIV test.

I've been there many, many times over the years for many, many ailments of an STD nature. I loathe going there for HIV tests because they were so nasty about it back in 1990, the first time I went. I'd had two very civilized HIV tests in dear, civilized Seattle and a year had gone by; it seemed a good idea for a sexually active gay man (it's 2011! Why hide this stuff?) to do this. They asked if I practcied safe sex, invariably. I said, frankly, yes for (Department of Euphemisms! Yo!) insertatory activity, no for oral sex. Other things ... um, which? They hit the roof. The guy raged at me. There was no such thing as dangerous, less dangerous, barely dangerous sex. There was safe sex and unsafe sex and that was it. Holding hands in a movie show when all the lights are low requires a condom. Got that? I didn't get that. I didn't care for it at all. And though I enjoyed, I was also a bit brought down, by the expression of utter defeat on their faces a week later when I came back for my test results (again the endless wait while the TV blared safe sex commercials designed for drug users and assorted lowlifes) and I was Negative As Usual despite having my own view of what did and did not constitute safe sex.

For the next several years I went to Jersey City for HIV tests (invariably negative), and Dr. Isaacs knew nothing about my HIV status (he offered to test me; I declined, wanting no one to know just in case -- paranoia struck deep in the AIDS years) until 1997, when I had lymphoma and it was necessary for him to know my HIV status in order to decide at what strength to blast me with chemo. Negative again! Full speed ahead, Mr. Scott. (Well, actually Dr. Gold.)

And so on as years passed and my sexuality declined and incidence of STDs declined and it became clear to me that HIV had no use for me. I was snubbed. It is my suspicion there are co-factors as yet undiscovered in persons of certain ethnicities; I'll be really bummed if I'm not around when they solve the whole story. My friend Jeannie, who has a PhD in biostatistics, says, "How come you're still alive?" Not sure. Partly: Moderation; Apollo's commandment. In the mad days, I was never a total crazy slut. Except sometimes. Got that?

I don't remember when I got my last HIV test, but I went back to 28th Street the day after I learned I had KS. What a difference two decades makes! I was one of four or five guys in the 5-8pm Thursday slot. They took the blood for the HIV test and told me to wait half an hour. They wanted to test me for other STDs, but I said, "Not necessary; I've been a very good boy." "That's what they all say." But in my case it's true. Half an hour not even feeling giddy. A change from the near trauma of my first HIV test which I was sure would be positive. This time I was quire sure it would be negative. It was. They will call in three weeks with T cell counts, etc. So now I had that card to play.

The trouble was, no one would believe me. No one even asked me. I was booked to see Dr. Yancowitz and, after a hefty wait, did. He is, like Dr. Shastri and all the orthopedists I've seen this year (three), very charming, and he wondered why the hell I was there. "I'm a contagious diseases specialist, not a cancer guy. I think you should see Dr. Malamud. I could test your T cells. That will cost in the hundreds not the thousands." Later it occurred to me this is probably repeating the test already being done for free on 28th Street. He said, "$100 is the lowest they'll let me charge you," they being Beth Israel. As specialist visits go mighty reasonable. But I was miffed. {He also told me my adored Dr. Gold is no longer at Beth Israel, which saddens me. She could cure me of anything. I am convinced of it.)

I called Dr. Isaacs' office and had trouble getting through. It's a very very busy practice. But I finally reached someone to whom I explained I'd been sent to the wrong specialist. Eventually Dr. Isaacs got on the line. "But for what you have, John, you see, since it is contagious -- "

"But it's not!" I cried. "Stop saying 'what you have' to me! I'm a grownup. It's 2011! I am HIV NEGATIVE. I have Kaposi's sarcoma! Just old-fashioned little-old-Jewish-man's disease. Not great big rashes all over my body! Just my TOE!"

"Really? HIV negative? Are you really? That's amazing, John. I can't believe it. That's wonderful news." He was clearly nonplussed. "In that case there are three specialists you could go to -- call Ron Blum. Yes. Or, you might want to contact Sloane-Kettering. They might be doing a study. It's a great surprise, you know."

My friend Anna Korn ransacked the Internet and tells me there's an uptick of KS among serionegative gay men. I think it's just old East European and East Med types, but anyway, so it be. It puzzles all the experts on KS, who are used to it being AIDS. But when I called Sloane-Kettering (a hospital my physician father always detested, by the way -- but that was in the 1970s), they said it would be a couple grand just to consult with somebody. So that expedient is on hold. Bellevue would see me at 8:45 in the morning next Friday, and their receptionist assured me it has nothing to do with AIDS and is strictly oncology, but that too I have put on hold because I want to go spend a week in Massachusetts, having been unable to get away from New York in months seems like years.

So I sent a rather surly email to Dr. Blum, explaining my case, that it was KS and NOT bloody AIDS, that I am a (no longer) sexually active gay man of a certain age, and asking if he'd see me, and he sent me (all things considered) a polite response, and I shall see him on July 28. It shouldn't have taken this long, eh? I want to know what scans he wishes to perform, what tests I should undergo, in order to find out how serious the whole thing is. And if it's spread a lot (which I do not expect) and life is going to become unpleasant, maybe I'll just pretend it never happened and go on a six-month opera and museum spree in Europe. (After finishing at least one novel.) And what it's all going to cost. Dr. Yancowitz assured me the chemo (if they do chemo) won't be remotely as overpowering as the chemo I went through for lymphoma. (I liked him. I've liked all my doctors. I even liked the staff at 28th Street. It's the waiting and dithering and confusion.)

On August 2nd Dr. Shastri will remove the other pimple, giving me two and a half day sto recover before I give Seumas a guided tour of the Met Museum (my birthday treat).

This all reminds me (just a little) of an incident back in the early days of the epidemic, c. 1982, when nobody knew what it was and everyone was terrified, hospital staffs as much as anyone. Everyone gay was terrified. I was. We all were. A guy I worked for at the time, Ted, had a terrible case of colitis, with complications, and his doctors were convinced he was gay and lying to them. So they wouldn't treat the colitis properly (contra-indicated should it be Gay Cancer), waiting for him to break down and come clean. I thought at the time (but didn't say to Ted), "If only your doctors were gay or had any gaydar at all, they'd know damn well you were straight." This skill was not taught in med schools then. Maybe still isn't. I dunno.

If the nurse on the phone's voice drops low and becomes very sweet and sympathetic, and she uses phrases like, "what you have" instead of naming names, Don't Stand For It. We're all grownups here. Say the thing. It's called AIDS. And I don't have it.

1 comment:

Dana Corby said...

Excellent essay, John. You're in my thought often, mostly along the lines of "I hope he finds someone soon who'll treat him for what he has instead of what they think he ought to have." Keep us posted, OK?