San Francisco Chronicle - The Voice of the West, 901 Mission Street, San Francisco, CA 94119 - Sunday, November 24, 1996 - Page 1/Z1
David Tuller, Chronicle Staff Writer

He counts out his daily ration. Four green ones three times a day. Two big round white ones once a day. An orange capsule twice a day. Diagonal and hexagonal ones, tiny circular ones, small yellow ones. Some attack the AIDS virus directly, others prevent or treat the opportunistic infections that plague those with weakened immune systems.

The big white capsules are Crixivan -- one of a new class of drugs called protease inhibitors that have revolutionized AIDS care in the past year. The drug has dramatically improved Peter's physical health and disrupted, at least for now, the fate he had already learned to accept: a slow, steady slide toward death.

Peter Di Giulio is a slight man with a round face and a gentle smile. Like many people with AIDS, he is confronting a life he thought he was leaving behind. He now resides in some twilight zone between sickness and health, between uncertainty and hope -- and the change is not an altogether welcome one.

Many of his friends are dead. His financial situation is worrisome. He has no idea whether the new drug's benefits will last indefinitely or whether they will wear off tomorrow, next month, or in two years.

"There's a big tug of war going on inside me," he says. "Between the side that wants to live and the part that had already accepted my mortality. I felt complete with my life; I felt happy with what I had done and accomplished. Now, I don't want to get my hopes up and get them dashed again. . . .

"If they can restore my health with a pill, that's easy in a sense," he adds. "But who's going to restore my shattered life?"

Peter Di Giulio was born in 1952 and grew up in a large Italian family near Rochester in upstate New York. With his lover at the time, he moved to the Bay Area in 1985 and found a job with Santa Clara County as a marriage and family counselor. After he tested positive for HIV in 1989, his lover left him -- an event that he still remembers with considerable pain.

Peter left his job on disability three years ago when intense fatigue overwhelmed him. As recently as last spring, his features were gaunt and drawn. In the past six months he's gained more than 20 pounds, and a paunch has settled around his middle. He recently bought several pairs of pants three waist sizes larger and joined a gym to keep himself in shape.

There are tens of thousands of Peter Di Giulios across the country these days, individuals battling AIDS whose fate looks brighter than it has since the epidemic began. The protease inhibitors are proving to have the kind of effects doctors and patients could only fantasize about even a year ago.

The first of the new drugs received FDA approval in December. Early this year, the agency approved two far more effective protease inhibitors, including Crixivan, the brand name for indivavir. Studies have shown that the drugs, when used in combination with older anti-viral drugs like AZT and 3TC, can reduce the levels of HIV in the blood to undetectable levels and boost the number of disease-fighting CD4 blood cells. And researchers expect that new drugs still in the pipeline could be even more powerful.

Stories abound of men and women on the edge of death regaining energy, weight and a buoyant spirit. Many are seriously considering returning to their jobs, applying for graduate school, buying houses -- in short, grappling with if, when and how to re-enter the mainstream of daily life. Others are simply relishing smaller victories, like going a whole day without a nap or taking a hike in the woods or rediscovering their libidos.

And yet, for many, other emotions have accompanied these intimations of health: Guilt at the prospect of survival when so many others have died. Loneliness for loved ones lost to the plague. Anxiety about their financial situations. And renewed uncertainty about what the future holds.

"It's hard to put these feelings into words," says Peter. "I feel this pressure that I'm supposed to be overjoyed that I'm better, and part of me is. But a turnaround like this brings up multiple issues in the psyche. You can't just say, `Gee, all my problems have gone away.' "

In an essay that appeared earlier this year in Frontiers, a local gay magazine, San Francisco psychotherapist Tom Moon addressed the concerns that he found many of his clients expressing.

"This sudden change of health and outlook is profoundly disorienting for some men, especially if they have been HIV-positive for many years," Moon wrote. "I have talked with men who are having attacks of anxiety, feelings of unreality, depression, suspicion and anger in response to the improvement in their health. Usually they're confused by their reactions or ashamed to talk about them. . . .

"How can we understand reactions like this? One of my clients explained it to me this way: `It's a little like living on death row and getting a stay of execution. I had a date when I knew I was going to die, and now all of a sudden I'm going to be allowed to live for a while longer. How long? Will I live to a ripe old age? Will the virus mutate in a few years and make the treatment ineffective? Don't know . . . I feel like I'm being jerked around.' "

The living room in Peter's Castro neighborhood apartment is cozy and filled with plants. The window offers a view of Twin Peaks and rolling fog. Smoke from Peter's cigarette hangs in the air. Though one wall is filled with photos of family and old friends, a deep-rooted loneliness cloaks Peter like a blanket.

His closest friend, Steve, died last spring just as Peter himself began to gain weight -- a juxtaposition of events that greatly unnerved him.

"Something about his death really triggered in me this existential sense of aloneness," says Peter, who had already lost quite a few others. "He was my last good friend, and now he's dead. I'd always had a few close friends, but now . . . I have lots of acquaintances, but no real friends."

Peter hasn't dated much since his AIDS diagnosis. It has been easier not to seek out new attachments, he says, given the accumulated pain of so many losses and his own belief that he would not live more than a couple of years. And the illness itself zapped what little energy he might have devoted to meeting new people.

"I have lots of acquaintances, but no real friends," he repeats.

Though he offers this as a statement of fact rather than a complaint, it is a statement tinged with resignation and sadness. Still, Peter finds some comfort in a weekly support group for people with AIDS, and his twice-weekly therapy sessions are also helping him cope. Recently, he has taken some small steps to reach out and expand his small circle.

In the past couple of months, he has met two different men visiting the city from out of town. David, who lives in Columbus, Ohio, plans to return to visit Peter next month. Meanwhile, Peter and Tom, a former San Francisco resident who now lives in Pennsylvania, have been conducting a sweetly supportive friendship by mail and phone.

These developments surprise and delight Peter. When he talks about either man, his eyes glow and his voice swells with pleasure. He recently wrote Tom about how difficult it was to pull his life back together, to re-imagine an existence in which HIV and impending death would not be the sole defining factors. Tom responded in kind.

"I'm so sad that I've been left alone with nothing but memories to sustain a broken heart and a wounded body," Tom wrote. "But we're more than that, Peter -- we're survivors. . . . Dammit, Peter, we are more than this illness and you can't let it win."

Peter was so touched by Tom's support that he carried around the letter all day and re-read it several times to bolster his strength.

In the corner of Peter's apartment sits a small piano that he bought three years ago, right after he went out on disability.

"I've played since second grade, and so it's always been a part of my life," he says. "Getting the piano was important to my mental health, because I knew that no matter how sick I got, I would probably be able to sit down and play. It was one way to bring myself some joy and comfort, a way to release stress. To prepare for things getting worse.

"If I'm melancholy, sometimes I play something melancholy, like Chopin's nocturnes, to acknowledge the feeling. But if I'm in a bad mood, sometimes I'll play something opposite to the feeling, something uplifting, like Chopin's waltzes, to get myself out of it."

Peter purchased the piano on credit but expected to die before he would have to pay it off. In many ways, in fact, his improving health has greatly complicated his financial situation. His rent is just $750 a month, but he spends more than $325 a month on drugs and supplements. He pays a total of $1,631 a year for his medications -- his insurance covers the remaining $30,471 -- and $2,363 more for vitamin supplements.

He currently collects $980 a month in federal disability. He receives some additional benefits through his former employer, and previously he expected to die before those ran out. If he continues to do well, he will need to rely more and more on AIDS service organizations and other sources to supplement his income.

One option would be to live on credit. Like many people who believed they would die of AIDS much sooner than they now expect to, Peter collected credit cards, garnering as much potential credit as possible in case he lost his benefits or needed to purchase experimental drugs not covered by insurance. He now has seven gold cards and eight regular cards, with available credit of up to $90,000.

"I bought the piano for $3,500, but besides that I was very careful," he says. "I got the credit cards for an emergency, but after I got them I decided I wasn't sick enough yet to load up the debt on them."

What terrifies Peter the most is that the government will yank away his disability income if he improves too much -- even if he does not yet feel well enough to work. And what on earth, he wonders, would he do? He quit his job as a therapist when he felt he could no longer maintain an adequate distance between his clients' troubles and his own. He worries he could never regain the necessary objectivity required to do the job well.

Moreover, he is concerned that the stress of a therapist's life might undermine his still fragile health. But will he live long enough to justify starting a different and less demanding career or seeking training in another field?

Unlike many people with AIDS, Peter has never had pneumonia, Kaposi's Sarcoma, or any of the other major opportunistic infections associated with AIDS. But he has suffered from chronic diarrhea and watched his weight drop from 145 to 112. He has also experienced skin ailments and neuropathy, a neurological disorder that can cause tingling or sharp pains in the extremities.

In addition to the weight gain he has experienced with the new medication, his diarrhea has gotten better; so has the neuropathy. But following the drug regime is in itself a task that would challenge the most organized patient. Peter is supposed to take his Crixivan -- without fail -- every eight hours. He is not supposed to eat for two hours before or one hour afterward.

Missing doses, or taking them at irregular intervals or on a full stomach, gives the virus a chance to mutate and develop resistance to the drug.

Because Peter still suffers some from fatigue, he sometimes falls asleep before his 11 p.m. dose. Once last spring he felt so overwhelmed by the demands of the drug regime that he took a one-day "drug holiday" from all of his medications.

"Sticking to the schedule is exhausting," he says. "It's annoying, it's frustrating, it's having to watch when you're eating, when you stop eating, it's having to carry pills and a beeper to remind me, or having to rush home because I didn't bring them. . . .

"I'm still tired, so it's aggravating to have to stay awake for the 11 o'clock dose and to get up for the 7 o'clock dose. When I added the Crixivan is when I really started to resent all the pills. Sometimes I stand at the sink and think, `Damn, I just want to flip them all down the drain!' But if I miss a dose, then I worry that I've screwed up my health."

At Japantown Bowl, Peter and several dozen other gay men take part in a bowling league that meets every Thursday. Peter is the secretary of the league. Amid the crash of hundreds of bowling pins, Peter scurries around handing out league newsletters and greeting the other members of his team, which is called Men With Balls.

Like Peter, many of the other bowlers have left work on HIV-related disability. Like him, too, many are on protease inhibitors and have witnessed dramatic improvements in their health. But not all. Peter points out Scott Underwood, a thin man with close-cropped hair who, he says, has tried protease inhibitors but experienced severe reactions -- a problem in a small but significant percentage of cases.

Scott sighs as he recounts his experiences. For a month last spring he took Crixivan, the same drug that Peter takes, but was forced to stop because of side effects from the medication -- suicidal thoughts, twitching, central nervous system disorders.

He switched to Norvir, another of the new drugs, and suffered even worse reactions -- extreme nausea, hallucinations, intense trembling. He's hoping more drugs come on the market soon so he can try again before it's too late.

"I don't whine, but I hate hearing all the good news," he says. "Other people don't understand, they don't get how devastating it is to hear all that good news and be left out."

The realization that the drugs don't work for everyone has deepened Peter's sense of conflict over his own improving health. Relishing his progress, he feels, seems somehow self-indulgent.

"The fact that Scott can't take these drugs . . . raises the question of why I should get away with it when he can't," Peter says with a tinge of bitterness. "That really bothers me. And then there's a bit of fear that if it doesn't work for him at all, maybe that will eventually happen to me, too."

Not everyone whose health has improved experiences a confusion similar to Peter's. Some, like fellow bowler Alan Pex, are simply thriving.

Last February, Alan started taking Norvir, the brand name for ritonavir. Since then, his CD4-cells soared from 38 to 428. Virtually all his symptoms -- cytomegalovirus in his esophagus, Kaposi's Sarcoma lesions -- have cleared up. Two months ago, he returned part-time to his job at a corporate travel agency and is studying for a master's degree in public health administration.

"I never thought I'd be able to work again," he said. "I think it's a change that will hold out. I'm putting aside money to buy a house. I just went back to school this fall. Now, I have long-term goals."

Alan excuses himself, gets up, and bowls a spare.

Peter is fretting during the drive to see his doctor. He expects to get back his latest test results. Will his CD4-cell count be up or down? And last time his viral load was undetectable. How about now? He has another concern he intends to broach as well. If he's doing better, will his doctor tell him that he may soon need to go back to work?

Dr. Ken Mills is a burly, middle-aged man with curly gray hair pulled back in a tight ponytail. Chatty and cheerful, he gives Peter good news. Though his CD4-cells have dropped slightly, his viral load -- considered the most reliable available indicator of HIV activity -- remains undetectable.

Peter sheepishly admits that he occasionally misses his late evening dose of Crixivan. Mills gently reprimands him about the dangers of skipping any of his doses, and Peter agrees to try harder.

Mills checks Peter's lymph nodes, tests his reflexes, and taps his torso to determine if his liver, stomach or other organs are enlarged, all the while maintaining a steady conversational patter. "How's your social life?" he asks.

"I seem to be meeting men from out of town . . . "

"You mean through the phone lines or e-mail?"

"No, they're visiting town and I happen to meet them right before they leave to go home."

"Oh." Mills smiles. "You're doing great! Don't let dark thoughts about whether you might have to go back to work overtake you."

"But they are!"

"Well, don't let them. We'd like these benefits to last for a long time, but let's say it's two or three years. Your obligation is to enjoy it. Because by then there might be something else."

Mills assures Peter he's not the only one dealing with such concerns. "It's a paradox," he says. "Of those patients who are doing well, more than I expected are dealing with issues they thought they had put to rest -- issues around work, around feeling better, around socializing and dating.

"And I think it's real important for them to talk about that. And it's important to their health that they consider it a gift that they have HIV now rather than earlier in the epidemic."

After the visit, Peter feels a bit less anxious about his situation. "His reassurance helped take some of the stress away," he says on the drive back home. "These stupid, irrational fears keep coming up and block me from enjoying my time. But I'm still afraid of getting too hopeful . . ."

On a recent Saturday morning, Peter heads to the AIDS Memorial Grove in Golden Gate Park. When the grove first opened, Peter's family had his name engraved into the stone in a clearing known as the Circle of Friends. Many of the hundreds whose names surround Peter's have already died; others are simply friends or lovers whose lives have been touched by the epidemic.

Peter recently had a dream about the engraving. In the dream, he is visiting the Circle of Friends with a companion. A man with a sandblaster is nearby, and the friend urges Peter to have his name removed from the memorial. Peter objects. He tells his friend that the names include anyone affected by the epidemic -- and that, anyway, he might still die of AIDS.

To Peter, the dream symbolizes the struggle taking place deep within, the struggle between the self who yearns for a return to life and the self who has accepted impending death -- and who has even planned how his friends and family should memorialize it.

"My idea was to have a little service in another part of the AIDS grove," he says. "And I'm such a drama queen, I'd have them play something sad, like Jessye Norman singing Berlioz's `Le Spectre de la Rose,' that would really bring tears to people's eyes. Then people would come back to the Circle of Friends for a more joyful celebration, maybe a picnic."

He suddenly realizes that he is talking about a death that may not take place for a long, long time. He just might, he says brightly, live at least until the next big earthquake.

And then, under the majestic redwood trees and the steel-gray sky, Peter Di Giulio laughs. ------------------------------------------------------------

PETER DI GIULIO'S DAILY DRUG REGIME

Like other AIDS patients, Peter Di Giulio has no choice but to organize his life around his medications. Some of his drugs and supplements should be taken with food -- but he can't eat for two hours before or one hour after he takes the protease inhibitor Crixivan. Deviating from the guidelines, which also dictate that the drug must be taken at regular eight-hour intervals, could give the virus a chance to mutate and develop resistance.

WHAT THE AIDS DRUGS DO

1. Septra

Protects against PCP (a) Cost: $587 per month

2. Crixivan

(anti-viral) protease inhibitor Cost: $509 per month

3. Biaxin

Protects against MAC (b) Cost: $86 per month

4. Zerit (d4T)

(anti-viral) nucleoside reverse transcriptase Cost: $214 per month 5. Cytovene

Protects against CMV (c) Cost: $1236 per month

6. Epivir (3TC)

(anti-viral) nucleoside reverse transcriptase Cost: $197 per month

7. Zovirax

Protects against herpes Cost: $111 per month

8. Myambutol

Protects against MAC (b) Cost: $91 per month

9. Diflucan

Protects against fungal infections Cost: $181 per month

10. Valium

For anxiety Cost: $17 per month

11. Lomotil

Anti-diarrheal Cost: $6 per month

Annual cost to insurer: $37,280 Annual out-of-pocket cost: $1,540

(a) Pneumocystis carinii pneumonia

(b) Mycobacterium avium complex

(c) Cytomegalovirus

VITAMINS AND SUPPLEMENTS

In addition to his medication, Peter takes a large number of vitamins and supplements every day. His hope is that they will help to bolster his immune system and provide further protection from opportunistic infections. Acidophilus Multi-vitamin/mineral with herbs Calcium and magnesium with zinc Vitamin C Vitamin E Marine Beta Carotene DHEA

Vitamin B-6

Iron

Selenium

Annual cost: $2,363
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