part 2 of 2
There's not much sense lecturing someone in an HIV clinic about the long-term hazards of smoking, although Myers suspects a link between smoking and Kaposi's ability to attack the lungs of people with AIDS.
Sam has a more immediate concern. At first, the Daunoxome reduced the swelling in his face and legs, but lately he seems to be having a reaction to the drug. After the last chemotherapy treatment two weeks ago, he vomited for four days straight.
"And now my knee's the size of a football and I can't see," Sam says.
Myers asks him to strip off his shirt and pants. Kaposi's lesions mottle Sam's entire body. He is so thin that his skin seems to cover only bones.
Myers asks about his appetite. Sam, hopeful, notes that he gained two pounds since his last visit.
"Well, it could be water," Myers says. Seeing Sam's smile start to fade, he adds, "but let's consider it muscle." Sam flexes a stick-figure arm and they both laugh.
The laughter stops when Myers tells Sam the bad news. He can't have this week's chemotherapy treatment--his white blood cell count is too low to tolerate the drugs. Sam doesn't say anything, but his disappointment is palpable.
Myers sympathizes: It's hard to do nothing. In the days before AIDS, his approach as an oncologist was to attack a cancer with every weapon he had at his disposal and beat it into remission.
When AIDS-related Kaposi's showed up, it was thought that as an aggressive cancer, it should be treated aggressively. But chemotherapy suppresses the immune system. For people whose natural defenses were already compromised by acquired immune deficiency syndrome, further suppression only invited infections that were more dangerous in the short term than the cancer. Oncologists like Myers had to learn to strike a balance between treating the cancer and creating a bigger problem.
Myers explains to Sam that treating purple spots for cosmetic reasons or even to relieve the swelling in his face wouldn't be acceptable if it opened the door to a more dangerous opportunistic infection.
"We're not trying to cure you," he says. "We're trying to make you more comfortable and hopefully put the brakes on the progress of the disease."
Myers tries to pick up Sam's spirits by prescribing Neupogen, a new medicine that increases the bone marrow's production of white blood cells. "It should get your levels up to where we can get you back on course next week," he says.
Sam squints at Stephen and they both nod. Where there's life...
Myers leaves Sam with a pat on the shoulder. In the waiting area he spots one of his favorite patients, Frank.
The young man sits in a corner with his head on his mother's shoulder. They both smile, and Frank opens his eyes--though he doesn't lift his head--when Myers walks up.
Frank, who's in his mid-twenties, is an inventor who recently came up with the idea of painting Disney characters on venetian blinds that appear when the blinds are closed. Disney was interested in his idea and, the last Myers heard, was negotiating about the rights to the innovation.
As he looks at Frank, Myers knows that the young man won't live to see the deal close. He's just a little guy, maybe all of five-foot-three. And somewhere beneath the distorting edema of Kaposi's is a boyish face that until recently was accompanied by an infectious laugh and Peter Pan impishness. Maybe that was why children always flocked to Frank, who spent his free time taking underprivileged city kids to the mountains for hikes and picnics.
Frank has been a patient for a year and had been holding his own until six weeks ago. But now he's beset by the wasting syndrome and unable to keep food down. Already he looks like a ghost with hollow, ringed eyes and pale complexion.
He's weak and can only nod when Myers asks how he is feeling. His mother rubs his cheek, as though comforting a little boy, and her eyes fill with tears.
Myers reaches down to tousle Frank's hair, then quickly turns away to regain his own composure. Although they had chased death off a number of times, it wouldn't be long now before the bogeyman caught Frank.
Probably this summer, Myers thinks to himself. Maybe sooner. He hates to predict such things, but he has seen too many people die not to know when time is running out.
Not all of the clinic's patients are such angels. Kirk is somewhere on the other end of the spectrum.
Hunched over in his wheelchair, an oxygen mask strapped to his face and connected to the blue bottle behind his chair, Kirk complains about almost everything. In a high, raspy whine, he voices his displeasure about his medication, the time he has to wait to see a doctor, the attitude of certain nurses, his ailments and the failures of medical science in general.
Last November, when he began using ABV--one of the older and most common treatments for Kaposi's--he showed remarkable improvement. But now he's worse than ever and barely holding on.
Lately Kirk had been refusing to come to the clinic for treatments and had actually begun turning blue from a lack of oxygen due to the Kaposi's in his lungs. Finally, he agreed to give the clinic one more chance. Although he would never win a popularity contest with the staff or patients, he's gained a measure of respect for his tenacity. Kirk was damned if he was going to let AIDS get him without giving the world a piece of his mind in return.
Two hours and almost a dozen patients after he started his clinic rounds, Myers stands in the staff room looking at X-rays of a man's chest. He's troubled by a cloudy area in one of the lungs.
The X-ray belongs to John, the patient who has been on the Daunoxome study the longest.
John is another of Myers's favorites, a professional survivor who'd already battled back from bouts with pneumonia two years ago that nearly killed him, thrush--normally a childhood disease that causes sores in the mouth and throat but a thousand times more powerful and painful in an AIDS patient--and cytomegalovirus, which reduced his sight in one eye and might yet be the death of him.
His medical file, which Myers holds, is nearly two inches thick. It includes a two-page list of the medications he takes, some to fight the disease, some to fight the side effects of the other drugs.
The cloudy area on the X-ray could be pneumonia again. Or it might be Kaposi's. That's what worries the doctor.
"They feel that if Kaposi's gets in the lungs, it's over," he remarks as a nurse walks up to look at where he's pointing on the X-ray.
Myers puts on his best "don't worry" face and walks to the examination room where John waits. He's tall, blond and has a tan that George Hamilton would kill for. Well-muscled, his grip is strong as he shakes Myers's hand with a hand covered by white scar tissue from an AIDS-related fungus. His model good looks are marred by large patches of purple that cover his nose and cheeks.
In moments of candor, John has admitted to Myers the pain that hits when friends as well as strangers recoil from the sight of his face. But such moments of self-pity are rare.
Today, though, he seems to sense something amiss. "Was everything clear?" he asks of the X-ray. His smile remains frozen though the lines around his mouth grow tight as Myers clears his throat and tells him about the cloudy area.
When the doctor finishes, John tries to recapture his good mood. "Gee, and after all that coughing, I was wondering if this is what congestive heart failure feels like. I haven't had that one yet." He laughs, but it sounds strained.
In another examination room, Jeff waits impatiently. He's a new patient who received his first chemo treatment two weeks ago. Thin, goateed and nervous, the young Hispanic was diagnosed with HIV in June 1991 but showed no signs of AIDS until recently.
"I feel good, really good," he says before Myers can close the door. "My whole body feels glad."
When it's apparent that Myers bears no bad tidings, Jeff feels safe enough to admit that his legs seem heavy. "I have trouble getting in and out of the car or out of chairs," he says.
Myers begins his examination, noting that Jeff's lesions are fading and feel softer to the touch, which means the area around them is draining better. And no new lesions are apparent. But he's more concerned about the reported "heaviness" in his patient's legs than he lets on. It could be nothing or maybe a reaction to the experimental drugs. But it could also mean that the disease is manifesting itself in a new way.
Myers has seen Kaposi's attack everywhere except the brain and the nervous system. But then again, until AIDS, the cancer was a minor player in the oncology field and not known to attack anywhere but the skin.
Still, there's no sense frightening the patient. Myers performs a careful neurological exam without raising any alarm--or finding anything to be alarmed about.
To ease the tension, he asks Jeff if he can "piss well enough to write your initials in the snow." It gets the hoped-for response of a laugh.
Myers slaps Jeff lightly on the back and tells him there's probably nothing to worry about. "But if you feel pain in your legs or scrotum, you get yourself to the hospital immediately, okay?" he says. He makes Jeff repeat the instructions.
The day's last patient is also new to the clinic. Roger looks ten years younger than the thirty-two years he gives in response to the doctor's question. He's rail-thin and his big, brown eyes follow Myers around the room. Beneath the pale skin of his face, dark lumps immediately signal why he's here.
Roger is accompanied by Tim, a large, muscular man who hovers near him like a mother bear watching her cub. His attention flies back and forth between his companion and the doctor as Roger reports waking up in the mornings with a bloody nasal discharge attributed to the Kaposi's that has invaded his sinuses.
Myers listens attentively, then launches into his spiel about who qualifies for the drug studies being conducted at the clinic.
Roger nods and seems satisfied. But Tim has questions. He works with children and tends to pick up every childhood sniffle. If Roger's immune system will be lower than ever as a result of the chemotherapy, is there any danger from childhood bugs?
Myers tells him to use common sense. "If you feel ill, try to avoid much contact," he says. "But otherwise, don't worry about it. It's more important to have your support."
"Any other questions?" Myers asks as he prepares to leave. "There's no such thing as a silly question."
Tim looks uncomfortable, as though he's not sure if the question he wants to ask constitutes treachery. He looks at Roger, then at Myers, then at Roger again. Finally, he blurts out, "Kaposi's isn't contagious...is it?"
Myers has just begun to reassure him that cancer is not communicable when Tim interrupts, glancing at Roger, who just stares at him and hurriedly says, "Yeah, I knew that. I just..."
The last remains unsaid. Myers nods. It's not a crime to be frightened of AIDS, and the couple will need all of their courage and love in the days ahead.
The doctor gets ready to leave the clinic. He'll have to return later tonight to write up the voluminous reports necessary to comply with the drug studies. But first he plans to attend the mayor's HIV Resources Council meeting. The council will be awarding Ryan White Title I and II monies--the largest federal funding for AIDS services. DGH has applied for nearly $1.8 million to expand the clinic's services.
Before he goes, Myers looks in on the men in the Library. He notices that John is missing. He locates him in one of the examination rooms, asleep on the table as the orange liquid runs down a tube into his arm.
John rouses himself from his nap, looking sheepish. The doctor and patient embrace for a long minute. They take their time pulling away from each other. They never know when an embrace will be the last.
Homos, the Return of the Bogeyman, and Cheating Death
It was a rainy night in 1960, and Adam Myers was standing at the curb with his thumb out, trying to hitch a ride.
A freshman at Villanova University, he'd chosen the Catholic school because he wanted to feel part of the majority for once. Although he had never really suffered from any sort of prejudice as one of the few goyim at his high school, he'd felt left out economically and socially, especially during Jewish holidays and community events.
For a good Catholic boy, the conservative university was a reassuring haven with strict rules about wearing coats and ties to school, as well as codes of conduct. Adam was a virgin and very conscious that even thinking about sex was a mortal sin.
On this night, though, sex was the last thing on his mind. He was standing out in the rain, trying to stay dry, hoping for a ride. He hadn't waited long when a car that had begun to pass him in the dim light came to a screeching halt. Adam ran to the car, opened the door and climbed in.
"Thanks for stopping," he said.
The driver put the car in gear and began moving down the road. He appeared to be in his late forties and was conservatively dressed in a business suit. The man didn't say anything or look at him, but Adam began to feel uneasy when the man placed his right hand on the bench seat and began to slide it over. The hand touched Adam's leg just as the car came to a stop at a stoplight.
Adam jumped out and ran. The light changed and the car pulled away.
This wasn't the first time an unwanted advance had left him confused and shaken. Back in grade school, Adam belonged to a Boy Scout troop whose assistant scoutmaster was later arrested for sexually molesting boys. The man had made a pass at Adam, trying to show the boy nude photographs of himself.
Now, years later, Adam stood on the sidewalk warily watching the car drive off, feeling much as he had at the assistant scoutmaster's home. Everything he had ever heard about "homos, fags and fairies" was that they were somehow sick...perverted. His own two experiences had convinced him that what he had heard was true.
He didn't tell any of his college friends about his hitchhiking experience. He didn't want anybody questioning his manhood. He had enough trouble finding time between his jobs to study, much less have a social life.
During the summer, he worked eighty hours a week stocking parts in a factory and serving as an orderly at a hospital in Hackensack, New Jersey. It was on the job there that he became reacquainted with death.
The old man was one of his favorite patients. He had arrived in the United States in the late 1800s from Italy. Now in his eighties, he still spoke with a heavy accent, telling stories about his life as a stagecoach driver while Adam fed, bathed and shaved him.
In those days, it was accepted medical policy not to tell patients that they'd been diagnosed with cancer. There was little anyone could do except try to keep them comfortable, and the practice kept doctors from having to deal with a patient's fear.
Somehow, though, the old man had discovered he had lung cancer. He tried to jump out the window of his hospital room but was unsuccessful; now he was strapped to his bed. One evening Adam went to check on him. He looked so thin and fragile, and he seemed to be breathing irregularly.
Adam would later learn that this breathing pattern is called chain-stokes respirations and that it precedes death. But all he knew then was that something was wrong. Adam thought the man needed to eat and get his strength back, so he tried to force some soup between his lips.
There was no response. Frightened, Adam left the room and busied himself so he wouldn't have to think about the old man.
When he returned the next night, the bed was empty and newly made. Death had come for the old man, and it was as though he had never existed.
Medical school at the University of Pennsylvania taught Adam how to deal with death: You simply had to look on patients and their troubles as problems to be solved as objectively and unemotionally as possible.
Instructors discussed "cases" with their students as if the patients were not present or conscious--even when they were. Adam learned never to touch a patient except when necessary to perform some medical exam. Even touching the bed, much less giving a reassuring pat on the shoulder, was frowned upon.
The concept of helping patients die with dignity was not part of the lesson plan. That would require getting to know them on a personal level, and, the instructors warned, emotions were too expensive for doctors.
Adam did not object. He accepted that in the most advanced medical community in the history of the world, this is the way it had to be.
He didn't have enough energy for philosophical debates, anyway. He'd married his wife, Judy, after his sophomore year of medical school. The ante went up two years later when Adam Matthew Myers III was born. Adam had to support his family. He had to succeed.
But despite his fears, Adam knew that he was where he was supposed to be. He loved medicine and thanked his mother frequently for her persistence; he sent yearly postcards updating Dr. Simels on his progress.
After graduating from medical school, Adam was working as an intern in the emergency room at the University of Pennsylvania hospital when a poor, young black woman brought in her six-week-old baby. The child was listless, unresponsive and severely dehydrated. Adam took the child, assuring the panicky mother that everything would be all right while privately worried about the possibility that the dehydration had caused the child's brain to bleed.
He called the hospital neurosurgeon at his home in one of Philadelphia's most affluent neighborhoods and said that he thought the child needed a spinal tap to check his prognosis.
"Go ahead and do it," the surgeon said. Adam replied that he didn't feel qualified.
"Just do it," the surgeon repeated and hung up.
Adam was shocked. He couldn't get past the feeling that if this had been a private patient instead of the child of an indigent parent, the surgeon wouldn't have been so cavalier. He took a chance and called the hospital's chief of surgery at his home. A short time later, a rebuked neurosurgeon arrived at the hospital and performed the procedure.
The child survived and was soon returned to its grateful mother. And Adam had learned a valuable lesson about what it meant to be a doctor.
June 16, 1994--Infectious Diseases/AIDS Clinic
At noon the clinic is quiet. A few patients wait: A man sits holding his head stiffly upright because of the bandages on his throat; a blond beach-boy type chews his bubble gum and makes it clear by his stiff body language that he believes he is out of place here; a young, emaciated black sighs and collapses into a chair like an old man.
Myers is distracted, shuffling papers from one spot to another as he waits to begin seeing patients. A friend and fellow physician has just been diagnosed with a particularly malignant form of cancer.
He has managed to pull some strings to get his hands on an experimental treatment program for his friend. It shows some promising results, even remission, in as many as 20 percent of the test cases. Twenty percent isn't much, Myers concedes, but it's better than nothing when you're facing an otherwise universally fatal disease.
And it means that he will once again be able to go on the offensive as an oncologist. This time it will be all-out chemical warfare: doctor, patient and an arsenal of heavyweight drugs against the enemy. Some of the drugs will attack the cancer, others will allow greater doses of cancer fighters than a human body would otherwise be able to withstand, and still others will combat the side effects like nausea and exhaustion caused by such a massive assault.
It will be hell for the patient as well as for his family and friends. The onslaught will put him in the hospital for six days every three weeks during a cycle of medication, recovery and remedication. But at least there is the chance that the bogeyman will be sent packing. And that is more than Myers has been able to promise any AIDS patient.
Myers's week is chewed up with meetings, grant writing, clinical research, reviewing patient files and attending a general-cancer clinic. As a professor, he has teaching responsibilities as well as his hospital rounds. But the HIV oncology clinic, which he conducts on Monday and Thursday, is where his heart remains.
Woofer, a skinny, graying man in motorcycle garb, shouts for joy from the waiting room scales that indicate he has gained five pounds since his last visit. He was concerned, because he'd skipped his chemotherapy session.
"They get mad at me around here because I ride my bike to the hospital, get all drugged up and have to ride home," he says, winking at nurses Georgia Caven and Jane Gilden. "But I only live a few blocks away."
"Hi, Doc," he says when Myers emerges from the staff room. "Sorry I haven't been around. I gained five pounds."
Myers reaches out and pats Woofer's hips. "Just checking to see if you were putting rocks in your pockets," he says.
Caven tells Myers that John is waiting in an examination room. As Myers walks in, John is returning a medical book to the shelf. "I wanted to see what disease I could come up with next," John says.
"You could write a whole new book," Myers grins.
The banter is so light that they might have been discussing a case of measles. John guesses that he contracted HIV sometime between 1980 and his companion's death from pneumocystis carinii pneumonia in 1983. Since then, he's had his own brushes with death a number of times.
Myers has a joke: "What two words do you not want to hear in the men's restroom?"
"I don't know," John shrugs.
John hoots, then deadpans, "Some of us don't mind hearing that."
Myers notes that John's lesions seem to be retreating. But he worries that a persistent cough might signal a return bout with pneumonia or Kaposi's, recalling the cloudy spot on the X-rays. He urges John, who is going back to Kansas for a couple of weeks to see his family, to monitor his health closely. They hug and murmur, "Take care of yourself."
Woofer, so-named because of his penchant for "woofing" beers, is waiting in the next examination room. The equivalent of the class clown, he keeps talking while Myers waits patiently to get his attention and discuss his treatment.
Cytomegalovirus has destroyed the sight in Woofer's left eye and caused tunnel vision in his right. Often a killer, the CMV seems to be under control. Most of the Kaposi's is confined to the genital area, which is polka-dotted with purple bruises, but even those splotches appear to have faded. Myers holds up a photograph taken a few weeks ago to confirm what his eyes have told him.
"I'm really pleased," the doctor says. Suddenly, he shifts gears. "You're not still using recreational drugs, are you?"
"Oh, no," Woofer replies, as though horrified at the thought. "I don't even go to bars much, because I know that's where the drugs are, and I don't trust my self-control."
Back in the waiting room, Myers runs into Peter Pfeiffle, the AIDS clinic coordinator. They're both in good moods. The clinic has received 90 percent of the Ryan White funding it requested--about $1.6 million. Among other services, the hospital will be able to add a pharmacy and dental clinic dedicated to AIDS patients.
Finally, it is six o'clock, and the last patient has been seen and treated. Myers has a moment to reflect with the clinic's oncology nurse, Georgia Caven.
Brad has had his ups and downs but is doing better. He's thrilled that the Daunoxome has reduced the edema in his legs enough that he can stoop to work in his garden, and he's already bragging about a pumpkin that promises to be exceptionally large.
Sam, too, has enjoyed a remarkable response to Daunoxome. He looks like a different man; the swelling in his face has gone down to the point where he can see.
"I didn't even know he had such big, blue eyes," Caven says. "Sam's happy as a clam."
Roger, the boyish new patient whose companion, Tim, had worried about catching Kaposi's, also has responded well to ABV. The lesions on his face, sinus and larynx have all regressed. Only his lack of appetite worries Myers; he knows the possible implications.
Wasting syndrome has just claimed Frank, the little inventor.
Myers had received a call from Seton House, the hospice where Frank was moved to spend his last days as comfortably as possible. "What is his core status?" asked the voice on the telephone.
Myers was speechless. Asking about "core status" is a way of determining what efforts should be made if the patient goes into cardiac arrest or stops breathing. Revive? Or simply let him go?
"I'll have to check," Myers answered. He knew it was his responsibility to have that information on hand, but it just didn't feel right to encourage a patient to fight as long as possible and then turn around and ask what he wanted done if his heart stopped beating.
Frank died the next day. "I'm going to sleep for a little while, and I want to be comfortable," he told his mother, courageous to the end. They buried him in his pajamas.
The little guy had put up a good fight. And yet, as slow as AIDS might kill one patient, it can overwhelm another in a matter of days.
Jeff, the young Hispanic man who only a month before had told Myers that his "whole body felt glad," was now on the brink of death. The heaviness in his legs had progressed up his back in a rapidly ascending paralysis. It wasn't the Kaposi's after all, but a cytomegalovirus infection of the spinal cord that failed to respond to the usual treatment of gancyclovir--an antiviral medication.
By the time Jeff was taken to a hospital, he was unable to move. He was in a hospice now, waiting to die.
Caven promises Myers that she'll visit Jeff at the hospice over the weekend. Myers nods his head. He can't bring himself to visit any more hospices or attend any more funerals right now. There's only so much emotional baggage he can carry.
The conversation turns back to Frank. He had loved life so much that despite repeated attacks from various painful infections, he was always willing to try something new and encourage other patients who were having a hard time. Yet, since he was gay, many people had thought of him as a pervert, a queer, a faggot. Someone to be despised, not a real man.
They compare Frank's approach to that of a patient in the regular oncology clinic who is suffering from prostate cancer. The man is an immigrant from Cuba who has a three-year-old baby girl and an alcoholic wife who can't even care for herself, much less their child. His best chance for survival lies in the removal of his testicles--but he refuses to go under the knife.
"He says he wouldn't be a man," Caven says. "He'd rather leave his baby to deal with life without him."
What defines a man? His genitals? Or something in his heart, something Frank had in spades. The question hangs in the air as the last patient hobbles out, down the elevator and into the night.
Next week: How AIDS changed Dr. Adam Myers as a physician--and as a man.
end of part 2
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