Thursday, July 28, 2011

Diagnosis III: The Mizrahic Mystique

When last we left our hero, he had nearly two weeks before a scheduled visit to a genuine oncologist, in this case Ron Blum at Beth Israel (date of appointment: July 28). So I went to the country to scream at the stars and read bits of novel to old friends, first Cat and Peter Bishop in Northampton, Mass., then Sue Arthen (and all the other Arthens) at Glenwood Farm in Worthington, Mass., the schedule being I would then move on to Laura and Tom Hanlon in Montague, Mass.

But after much corn on the cob and four episodes of Firefly (none set to music) and two or three episodes of bathing in local streams, I found the second cancer lesion on my toe, the one that grew slowly and never made trouble, was growing fast, had burst in mid-water, and was bleeding a bit. I was sufficiently freaked by this to cancel Laura, have Sue and Kyriel bandage my foot to excess (in fact it did not burst or bleed on the trip), and caught Mega Bus back to the city on the Saturday afternoon.

My podiatrist, Aditi Shastri, is not listed in New York phone directories, so I could not apprise her of the situation from up north, and a Friday night (and subsequent days) is not the greatest for tracking down an unfamiliar podiatrist in the wilds of New England (though H.P. Lovecraft claims a whole tribe of them once flourished there, ruminating on zucchini and murdering alien children), but I sent her an email as soon as I was home where I had her email address, and she made room for me Tuesday morning. Sue and Kyriel's bandages easily held out till then.

"I'll have to put the tourniquet all across your foot," Dr. Shastri said, and I thought, "This will be bloody murder," but in fact, as we chatted about tourism in India and so on, the thing came right off. Will it come back? That is beyond predicting. No sense sending it for a biopsy -- we already know the bad news (which had cost me $480 to get). On Tuesday night the toe stung, but by Wednesday night I was well enough to stand in front of the Delacorte Theater and cadge a freebie to All's Well That Ends Well, commencing a three-day orgy of Shakespeare as pre-birthday festivity.

Today, Thursday, having been apprised that Dr. Blum had an afternoon appointment, I biked to Beth Israel at 11am. Many papers to fill out. At last the doc, as urbane and charming as the others. "I find patients are either 'lay-it-all-out-for-me' or 'I-don't-want-to-know,'" he said. I said I was the former type; he said he was, too.

We talked about my bout with lymphoma back in '97 -- my beloved oncologist Ellen Gold departed the hospital, he told me, in fright after 9/11 -- and about the fact that most of his KS patients were either epidemic (i.e. AIDS-related) or endemic -- and that the latter were almost always Sephardic Jews, not Ashkenazic Jews. Now while there is a tradition that the first Yohalem (born 1792) might have been born in Palestine, he was (if so) almost certainly the son of Polish or Lithuanian Jews who had taken refuge there; Sephardic we're not. And everyone on every other side of the family is Ashkenaz.

"In that case," said Dr. Blum, "it probably is a case you acquired via sexual contact, though without HIV." What? Me have sex with another man involving physical contact at sometime in the last 20 years? How is that possible? (Under oath, after squirming, I admit: Yes, it's possible. Probable. Frequent. Okay? Just not lately.) And he jiggered his lightweight futuristic whatchamacallit with keyboard and Internet but not a word processor, very convenient no doubt but I want one with a word processor. Who can sum up a thought in 140 characters? I ask you? I have trouble getting it down to 1400 characters. And he said, "There are findings about non-endemic but non-AIDS KS in gay men of a certain age. I'll have to do some reading this weekend and get back to you on it." (My friend Anna, a paramedic, had said the same.)

"But my instinct is, if it were HIV, it would be all over your body; if it's endemic, it will stick to the lower extremities and not be very aggressive." Just like traditional KS.

So we watch and we wait and we pretend it isn't there unless it's there. Then we get rid of it and go about our business. Meanwhile plotting how to pay for any extravagant outbreaks.

No major tests escheduled. No chemo or radiation at least for now, though I am suspicious of that second lesion and how far it has gone, and how much remains. Dr. Shastri took X-rays before she removed the first lesion, and I have asked that they (the X-rays) be faxed to Dr. Blum.

Maybe I have a totally new sort of sexually-communicated KS. It's the sort of weird half-stunt I'd pull. No worries. Peter is making me a little statue of Aesculapius for my altar. Trust.

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.

Saturday, July 2, 2011

Diagnosis, or The Apple Doesn't Fall Far from the Head

Sh'ma Yisrael!

Do you remember 1981? I do, pretty clearly, though I was only ... never mind.

1981 is when the CDC first noticed a lot of gay men in New York and San Francisco were getting diseases (and not getting cured of diseases) that did not suit their demo. No doubt this had been happening for years and doctors had merely been puzzled. But a cluster is a cluster.

One of the two diseases was Pneumocystis carinii pneumonia, a perfectly dreadful way to die. The other was an obscure cancer called Kaposi's sarcoma which, doctors explained, tended to afflict elderly men (between 50 and 70 - oh, fifty was an unimaginable old age to me then!) of Eastern European or Jewish or Mediterranean backgrounds, who would treat it (there is no cure per se), live another twenty or thirty years, and die of something else entirely. But these young gay men (my age!) were getting it and it was spreading like wildfire to all sorts of organs, leading to pretty horrible deaths. Eventually - but you know this part of the story - the two syndromes proved to be one, with ramifications. I spent years with the jitters about these ailments, and I still have a list (somewhere) of eighty friends (or very casual acquaintances) who did not survive.

And I alone am escaped to tell thee. Well, not alone (thank the Gods!). I tested negative, when there were finally tests. "You must have lied to me about what you were doing," accused one old (soon to be late) friend. No, I did all that. I just didn't ... pay the price. I believe there will turn out to have been co-factors making certain people immune, but in the meantime I credit the Will of the Powers that I endure, the chance workings of imponderable Providence, low libido factor and dumb luck. (These are four verbalizations for exactly the same concept.)

And science dragged its slow (to outward view) progress and came up with, if not cures, astounding palliations and preventatives, and the human race learned a whole lot about cancers in the meantime. Such as that Kaposi's sarcoma (named for its discoverer, a Hungarian - of course - in 1872) is actually activated by a herpes virus, a discovery at my old alma mater, Columba, in 1994. Herpes is everywhere; as a disease (actually, it's many diseases), it leaves AIDS three lengths behind on the track.

So I am bumbling along minding (or not minding) my own business, and I get this infinitesimal red dot on my little toe. I noticed it in March because that's when I went to my doctor to consult about my shoulder problems and mentioned that too. He recommended an orthopedist but did not seem unduly concerned. The dot grew to large pimple size, but it never hurt and it didn't seem a strange shape (completely round) so I let it alone. Then it began to burst due to the pressure of shoes and of walking, and after a couple of days trailing blood around the house, I went to see an orthopedist, a lovely young New Jersey girl of Indian extraction. (If the doctors aren't Jewish, they are usually Indian or Chinese, eh?) She took it off with no fuss at all and very little pain, sent it out casually for biopsy, gave me antibiotic ointment and Vicodin and sent me home. That was Friday last. On the Wednesday she called me: The biopsy was in. Bad news.

Kaposi's sarcoma.

True, I've always been the soul of retro ...

But I'm HIV negative! I wanted to scream. (Went to the public clinic on 28th Street just to make sure the very next day, and yes, I'm still negative. "I don't need the rest of the tests, just HIV," I told the nurse. "I've been a very good boy." She said, "That's what they ALL say.")

And though of East European Jewish descent on, oh, 100% of my ancestry, I don't think I'm a little old man, and I practice Paganism - doesn't that count for anything?

My Birth Certificate begs to differ: I'm dead center in the demo and Jewish as they come. Sh'ma Yisrael, eh! I guess this will save me spending $200 on the ancestral DNA test cousin Karen wants me to get. (Or maybe I'll do it anyway.)

"Can I just forget about it for a few months?" I asked Dr. Shastri. She said, "No, this isn't something you want to just ignore. It might have spread all over and you just don't know about it. The digestive tract. The respiratory tract. You'll need some tests, some scans, to see if it has spread. If it hasn't, maybe it will just pop up like this occasionally ... but you never know." The problem is I have no health insurance, having no income. (AIDS would have been useful at this point. The state funds that.) I have savings, and money I've just inherited, but ... I'd earmarked that. I thought I could wait it out till Medicare set in. But I'm not quite that old.

If it's spread all over, maybe I just want to check out, but that's not easily done either. There are bridges, of course. And lots of states where it's easy to buy a gun. Or I spend the goddam money.

Death is William Tell, it occurs to me (that being the next opera I'm going to see, next Saturday night), and my head has already survived the arrow two apples' worth: The AIDS epidemic and my own personal lymphoma, fourteen years ago. It's highly unlikely I'll dodge a third as well.

Nadja says, "You didn't get AIDS so you've only dodged one apple. This is the second. I command you to live until you are ninety (two years older than my grandmother), and I'll come visit you every year in New York as soon as Wolfgang is old enough."

At the moment it is very difficult to be cheerful about it though, as you may note, it is very easy to be funny about it, as is my wont. (I was funny about lymphoma, too.) Chats with various specialists and clinics are to take place Tuesday, after the holiday. Balms bursting in air.

Over, but not out.