So the tablets are large enough to require a matched set of steamer trunks on wheels, not a pillbox. I’ll deal. It’s the “on an empty stomach” part that’s tricky. I used to do AZT on an empty stomach based on the advice of one of those fifteen thousand medical circulars I collect: It was either ACT UP’s
Treatment and Data Digest
or the
PWA Newsline
or
The Body Positive
or the AmFAR directory or the John James biweekly or GMHC’s
Treatment Issues
or Martin Delaney’s Project Inform newsletter. But then Larry Waites, M.D., of
The Advocate
told me otherwise. I think it was he. Does it really matter? Probably not. In any event, I don’t think I’m capable of taking another drug three times a day on an empty stomach along with ddI twice a day on an empty stomach when an empty stomach means you ingest nothing in the two hours before and one hour following, but drugs may not be ingested until two hours following because the ddI buffer would inhibit proper absorption of the other drug. Unless I wanted to do the Gandhi thing. But I doubt the political efficacy of an antiretroviral fast, even on the steps of the Capitol.
So I wake up at 6:35 in the morning and mix up a batch of ddI cocktail and use it as my gym fuel instead of a bottle of Carboload, which is really nothing more than overpriced sugar-water with artificial colors so vivid I hear they’re experimenting with them for gastrointestinal exams instead of the radioactive shit they use now. And if that means I’m stuck going to the gym seven days a week, tough luck. Or I drink enough decaffeinated lemon-zinger iced tea the previous night to guarantee arising at an unearthly hour for a predawn piss, and then I grind up some ddI elixir before collapsing back in bed, my erection long since whizzed out. The evening dose is taken two hours after an early dinner. I try to avoid untimely snacks. One night I even skipped dinner because it conflicted with my drug schedule; another night, I simply skipped the drug.
“Why not take the ddI at nine A.M. and nine P.M.?” my doctor suggests. “That’s when I take it,” he casually remarks. I suppose a certain sense of camaraderie can be gained by the frank admission of a doctor that he is undergoing the same regimen as his patients, along with, I fear, the inevitable anxiety that one’s doctor may not survive the course of one’s own treatment. But, again, I heard about a local physician who didn’t divulge his illness to his patients ; they were shocked and completely unprepared when he died suddenly, of AIDS.
This is the easy month. I’m taking underground ddC with AZT. The New! Improved! ddC, available at the PWA Health Group, is a reasonably sized pill. Quality control is better: The government isn’t likely to urge them to take it off the market due to variable dosage again. I could even get the official ddC through some expanded-access program because my T-cells suck. I’ve already progressed (without even realizing it until I read the fine print) in terms of AZT failure by dropping below 200.
Luckily, I haven’t had any side effects with either drug. None of that nasty peripheral neuropathy or potentially fatal pancreatitis. I’d already tried the Old! Variably Dosed! ddC from the PWA Health Group last fall. Here’s a simple mnemonic to remember my alphabet-soup cocktails: I’m Doing Drugs Intermittently or Drinking Deadly Cocktails in the hopes of
A
Zillion T-cells.
Michael Callen was once quoted as saying that taking AZT was like shooting a mosquito with a nuclear warhead. Bombs away! The data aren’t in on either combination. An exceptionally intelligent AIDS activist was reportedly against ddC approval simply because there were no convincing data, but then again, Mark’s a blond. I know that’s an irrational dismissal. I used to be politically correct. I’ve since regressed. I would even consider dating someone who: (a) was an aerobics instructor, (b) aspired to be an actor, and (c) didn’t wear underwear. As a matter of fact, I’ve already given him my keys. But isn’t life itself a crap shoot? If I’m forced to make a decision in a vacuum, I might as well take a deep breath and try it.
This appeared in
QW
after an interminable delay. As expected,
QW
cut my joke about the phone-sex ad. After reading this piece, Bob Caviano, founder of LIFEbeat, paid me the ultimate compliment one day by telling Jim Baggett, “Miss Feinberg understands.” “
I am planning on starting a column in a major periodical with widespread circulation titled “Miss Feinberg Understands.” People could write me about any problem, no matter how ludicrous. For example, a reader from Manhattan writes: “I recently fell in love with my stepdaughter, and now my ex-wife, whom I’ve broken up with but never actually got married to; actually, I’ve never even lived with her, we keep separate apartments on the opposite sides of Central Park; she is claiming that I molested her seven-year-old adopted daughter. I didn’t mean this to happen; love knows no reason. However, my ex is threatening to drag me through the dirt and ruin my career. She just doesn’t understand. Could you help me?” Or, a reader from Waco, Texas, writes: “I’ve always believed that in America one should be free to worship whomever one chooses. Also, I strongly support the principle that under the Constitution every American has a right to bear arms. There are some people from the Bureau of Alcohol, Tobacco, and Firearms who disagree. They just don’t understand. What should I do?”
No matter what the problem, I would always have one stock reply: Miss Feinberg understands.
Bob Caviano died on September 22, 1992.
Larry Waites died of AIDS-related causes in the fall of 1993.
Nam Yoho Renge Kyo
I was walking up Seventh Avenue on my way to a fund-raiser when I came across Richard, a deranged poet who used to smoke too much dope but now chants instead. Richard was in the category of cute-possible-boy-toy-but-unfortunately-too-spacey-to-make-a-date-with. Richard decided to accompany me. I knew he wouldn’t actually go to the fund-raiser because money was involved.
“Let me tell you a story, Dave. I want to get your reaction,” said Richard.
“Fine.”
“There were two lovers from San Francisco and they were both HIV-positive.”
“Is this a joke?” I interrupted.
“No. This really happened. After they tested positive, they decided to chant. They chanted
nam yoho renge kyo
for three months. Then they got tested again, and guess what? They were negative.”
I said, “Bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit bullshit. Why are you telling me this bullshit?”
Richard replied, “Well, of course, if you didn’t believe in it, it wouldn’t work for you.” And this is when I had my Joan Crawford moment. Usually, you think of a snappy response three days later in the shower or on the toilet or when you’re stuck on the E train because there has been a police action at Forty-second Street and the train has been held indefinitely, but today everything was crystal clear; it was as if I were Joan Crawford, and some demented scriptwriter who had been up until five in the morning high on reds rushed to the set and handed me today’s nasty dialogue just as I strode out of makeup wearing six-inch fuck-me pumps and an Adrian design with shoulders out to Cleveland.
“Are you HIV-positive?” I said, omitting his name because at that point I was so furious I couldn’t recall it.
“No,” responded Richard.
“Well, then maybe if you chant long and hard enough, you’ll seroconvert, too.”
A few days ago I saw a Person Without Permanent Housing outside the local ATM. A Smartly Dressed Woman with Matching Handbag and Shoes had just handed him a card, which I assumed was a referral for social services or shelter. But she didn’t leave: She wanted to be sure that he understood the contents of her card. An act of altruism on Twenty-third Street. How nice, I muttered to myself. At her direction, he read the card aloud: “Nam yoho renge kyo. ”
Oddly enough, Richard didn’t come to my reading later that week.
Needles and Pins
For the most part, it’s no big deal with me: It’s just a tingly feeling in my hands and feet. You’ve felt it when your ex comes over at three in the morning hysterical because his new boyfriend dumped him and his therapist is on vacation and even though it took you three years and four therapists to get over him when he dumped you, you turn the cheek and comfort him, although not in a sexual manner because that would be far too dangerous, and then he inexplicably falls asleep with your left arm around his shoulder and you can’t move your arm for fear of inadvertently waking him up because he has a tendency to shriek like a car siren and fall to pieces when awakened from a trauma-induced psychological coma and your neighbor across the hall will probably retaliate with all six compact discs of Barbra Streisand if this goes on for one more night and consequently your arm falls asleep. Once in a while it feels as if I’m walking on pins and needles that have been heated to 460°F and I’ve forgotten to deaden the nerves through the power of suggestion, but that usually doesn’t last more than a minute. A few weeks ago (July 15, 1992, to be precise, according to my Dream Diary) I dreamed I was experiencing anal neuropathy: a tingly but not altogether unsatisfying feeling along the posterior end of the alimentary canal, and I thought, Jesus, not another sexually transmitted disease, but then it turned out that my rude boyfriend was trying to fuck me in my sleep. One can speculate that it might be nice to have an occasional bout of penile neuropathy: Imagine a thousand tiny fingers urging you to let go with your own built-in French tickler just like the ads in comic books. But I’m sure this would be the sort of thing that one has no control over and it would happen during the most inappropriate circumstances: when you were being interviewed by the co-op board or when you were reciting the Four Questions at the seder, for example.
I don’t have it bad. Yet. Dennis’s friend has severe neuropathy. He is in such constant pain that he is taking morphine for it. My friend David had constant neuropathy. He couldn’t button his shirts. He had to get special handles on the doors and for his mugs. Everything became a trial. With severe neuropathy, I don’t suppose I’d be able to type anymore. I could always use a tape recorder and use my nose to push the buttons. I can’t imagine how difficult putting on a condom could be, let alone masturbation. I wonder whether this is the sort of thing a visiting long-term home-care attendant would be conversant in.
According to AmFAR’s
AIDS/HIV Treatment Directory,
“The first type, subacute and chronic demyelinating polyneuropathies, occurs relatively early in HIV infection, before susceptibility to major opportunistic infections, while the second type, predominantly sensory axonal polyneuropathy, develops as a late complication. The first is felt to have an autoimmune pathogenesis and, like subacute ... or chronic idiopathic demyelinating polyneuropathy (CIPD), which develops in non-HIV-infected persons, responds favorably to plasma exchange and to glucocorticoids, with the former being the currently recommended treatment. The major morbidity of axonal predominantly sensory polyneuropathy relates to pain”
(AIDS/HIV Treatment Directory,
AmFAR, Vol. 6, No. 1, p. 73).
Translation: You’re riding on bald tires. Your brake shoes are shot, and your shock absorbers have gone to hell. What you really need is a Midas muffler for myelin. After seeing
Lorenzo’s Oil
I thought that maybe if Susan Sarandon were my mother, she would have come up with some nutritional supplement that could cure neuropathy, foil prejudice, halt nuclear proliferation, and lead to world peace. And then I realized the AIDS community already came up with its version of Lorenzo’s Oil years ago: It’s called AL721 and it didn’t work.
Neuropathy hits the hands and feet first because they have the longest nerve cells. Remember all that stuff from high-school biology about neurons and axons and the myelin sheath? Who would expect to be using it twenty-odd years later?
I assume I have the mild form of neuropathy. I’m not in any major pain. Yet.
Everyone has advice for me. Chris says take vitamin B. Stan told me he thought it was part of the HIV thing, weird sensations in the feet and the hands. He didn’t think it was necessarily caused by drugs. For all I know, it could be a consequence of lousy T-cells.
Last year I got the bogus ddC from the local buyers’ club that they pulled off the market. The dosage was variable: I suppose they hadn’t yet perfected the amount of baby laxative to use as filler. I figured it was bogus when I got neuropathy from the real thing. So now I’m trying peptide T from the local buyers’ club to offset the side effects I should have gotten in the first place. Unfortunately for me, the local buyers’ club has no money-back guarantee, no bulk discount, no cents-off coupons in the
PWA Newsline.
Although they don’t take insurance or my Chubb LifeAmerica Prescription Drug Program, they do take Visa and American Express.
My doctor suggested I try peptide T for neuropathy. It’s the coolest drug to take, with the neatest method of delivery. You squirt it up your nose: left nostril, right nostril, then left, not unlike nitrates of days of yore. This is a hell of a lot easier than spending twenty minutes with a leaky nebulizer, sucking up aerosol pentamidine. You’re not supposed to hold your head back, because then it would drip down your throat. Instead, I hold my head upright and generally sneeze or have it drip down my nose.