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Chapter One: Deborah Sweet: July 1991
Deborah Sweet is balanced on the little chair by my desk, leaning forward and looking deep into my eyes. One of my hands is clasped firmly between both of hers. "I'm real, real glad you're gonna be my doctor," she says. "I know we're gonna get along just fine."
I wish I could say the same, but Deborah has been raising hell in the clinic for two years now and I know we're not gonna get along at all. No one ever gets along with Deborah. She is handed from doctor to doctor like a sputtering grenade. Last month the clinic director decided that perhaps a firm and experienced hand like mine was what Deborah really needed, and hence her dog-eared chart is now sitting on my desk and Deborah is sitting on my examining room chair, slathering me with loving-kindness.
She is a tall, heavy, middle-aged woman with dyed orange hair. One of her big gold earrings is ripping through an earlobe. The leather handbag on her lap is overflowing: I glimpse a Bible, an empty pill bottle, and a handful of tattered envelopes that undoubtedly contain forms for me to fill out. But Deborah is too savvy to get to the forms right away. She knows that first impressions are important.
Unfortunately, I've learned a good deal about Deborah already. The aunt who raised her since she was orphaned as an infant is a nurse who used to work at our hospital. Many of our clinic nurses are good friends of the family, although too loyal to comment directly on Deborah's career save with a shake of the head. A smart girl from a solid background, she apparently was given every advantage and went straight to hell. From what I have pieced together, nothing more exotic was involved than a lot of drugs, a little prostitution, and a smidgen of petty theft. In between, Deborah finished a few semesters of college and married several times, most recently to a Mr. White. She, her husband, her aunt and her uncle, reunited now by the compromises of illness, poverty, and old age, share a two-family house near the hospital. Her two grown children live in another state.
I am considerably more familiar with Deborah's clinic career than with her private life, since her voice tends to penetrate doors and walls. She was diagnosed with AIDS during a hospital admission for pneumonia in 1989. The doctor who took care of her during that admission was an old professional friend of her aunt's, one of the neighborhood's more genteel private practitioners. After Deborah's discharge he suggested that she should come to our clinic for her follow-up care, since his familiarity with the medications used to treat HIV infection was limited. Was this ground for transfer coincidence or prescience on his part? How did he know that medications are precisely the cause of so many hard feelings between Deb and her physicians? She is still behaving beautifully in Dr. Schwartz's office when her aunt brings her in to him for intermittent checkups. Her tantrums are reserved for us.
Deborah has had no further episodes of pneumonia or other infections since her AIDS diagnosis. Rather, her ongoing medical problems all predate this most recent assault on her health. She has chronic anxiety for which she takes Ativan (a sedative related to Valium, 1 milligram three times daily). She has chronic hip pain from a longago car accident, for which she takes Darvocet (100 milligrams three times daily). She has a history of seizures from an old concussion, for which she takes Dilantin (100 milligrams three times daily) and phenobarbital (30 milligrams four times daily). She has a peptic ulcer, for which she needs Zantac, and an asthmatic condition, for which she needs a Ventolin inhaler. And, of course, she takes AZT to slow the progress of her HIV infection.
So far, no problem. This has been the problem: "Excuse me, Doctor, but you did not. You most certainly did not give me my Ativan last time. You said you were going to but you did not. I got home and I didn't have the prescription. I didn't have it anywhere. And I need my medicine. That's what I've come back for. I don't care what you wrote in that chart. YOU DIDN'T GIVE IT TO ME. I DON'T CARE WHAT YOU SAY. YOU GIVE IT TO ME NOW. YOU GIVE IT TO ME NOW OR I'LL DO SOMETHING TO YOU. YES I WILL, RIGHT IN YOUR WHITE FACE. YOU TREAT ALL BLACK PEOPLE THIS WAY, DOCTOR?" And once she is off, nothing works to stop her, neither soft words nor security guards, nothing but the prescription for whatever it was, which was mysteriously absent from her medications at her last visit, or which she lost in a fight at Yankee Stadium yesterday, or which was stolen from her car, or which was taken out of her handbag on the train. When the desired prescription is safe in hand she strides out, vowing under her breath never to return. But she always does.
We figure Deborah is as good as a ticker tape for monitoring the street value of prescription drugs. Ativan is hot one week, Darvocet the next; Zantac and Ventolin, both said to potentiate a cocaine high, are always in demand. AZT is a new addition to the street pharmacopoeia but gaining in popularity. She is probably taking next to none of the medication herself: she certainly has a lot of vigor to be ingesting much Ativan, and her blood Dilantin levels- routinely used to monitor therapy-have usually been negative. The changes AZT causes in the shape and size of the red blood cells are nowhere to be found in Deborah's blood smears.
Not that many of Deborah's blood smears are to be found either. In fact, when I looked through her chart before calling her into the room, I couldn't find any blood results less than two years old. Ordinarily we order blood tests at least every few months for someone taking AZT. But of course, Deborah probably isn't taking AZT, and the day she was confronted with this hypothesis was, I imagine, the day she decided she might as well stop getting her blood drawn. She has the arms of a hard-core drug injector-scarred and thick-skinned, all the superficial veins dissolved long ago. Obtaining blood from arms like hers requires patience, skill, and a considerable time commitment, while the easier and less painful alternative of puncturing the big vessels in her neck or groin mandates her assent and cooperation. None of these commodities is in particular evidence in her chart, and no blood results either. What to do?
What to do but to look back deeply into Deborah's eyes and smile hard. First impressions are, after all, important.
"I'm very glad to be taking care of you, Ms. Sweet."
She releases my hand and leans back, satisfied.
"I've just been looking through your chart here to get to know you a little. It looks to me like you've been feeling pretty well."
It certainly does. For someone who has had AIDS for three years, Deborah looks like a million dollars. She is hefty and sleek, her skin clear, her voice strong as she leans back in the chair and says smugly, "Well, now, that's because I take my medication, Doctor, especially my A-to-Z."
Her A-to-Z? Her AZT.
"How much of that AZT are you taking these days, Ms. Sweet?"
"I take 200 milligrams every four hours, five times per day, Doctor. That doctor before you tried to cut me down, but I told him no, that's my dose that I take and that's the dose that's keeping me well, and that's the dose I take, is all. He was no good, anyhow."
She is completely accurate. Deborah's last clinic visit did in fact terminate, loudly, with her insistence on obtaining prescriptions for an outdated AZT dosage, twice as much as has been used in patients for several years. I feel a little bolder, remembering this. She has never staged two scenes in a row. I look her in the eye.
"That's too much AZT for a lady who doesn't get blood tests."
"You think I look sick, Doctor?" The smile is gone from her face and she sounds fierce.
"That dose of AZT can do a lot of damage to a person's red blood cells without showing up in how they look."
"What you driving at, Doctor?"
"I want to keep you as healthy as possible, Ms. Sweet. That's why I'm not going to give you any more AZT until I see how your blood count's doing." A bold stroke. I hold my breath, but Deborah is unfazed.
"I get my blood tests, Doctor. My doctor, Dr. Schwartz, does my blood tests. I just come here for my medicines."
The thought of the elderly, elegant Dr. Schwartz, his nurse, or any laboratory he does business with dealing with Deborah's arms, neck, or groin is comical. Only hospital hacks with years of ongoing experience drawing blood from drug users (or drug users themselves) can successfully tap extremities like hers.
"Well, I'm sure Dr. Schwartz fills out your blood slips for you. But I bet they have a hard time in his lab with those arms of yours."
Silence.
"And then I bet they send you back to his office so he can draw your blood himself."
Silence.
"And then I bet you don't go."
Silence.
"And then I bet you tell him that we're checking your blood here so he doesn't have to bother."
Silence.
"You know, I can take blood from your groin in three seconds and it won't even hurt."
She looks dubious.
"And then I get my A-to-Z?"
I look dubious.
But this is how, ten minutes later, I have two warm tubes of blood labeled and safely swathed in plastic on my desk and Deborah Sweet has a prescription for an obsolete and dangerous dose of AZT in her fist.
'You see, Doctor," she says as she reaches into her purse for the SSI (Supplemental Security Income)/ disability and housing forms I have to fill out and sign. "I told you we were going to get along real well. Don't forget to write me for my Ativan today."
July 1991
February 1992
Mary, the head nurse in the clinic, rolls her eyes as she puts Deborah Sweet's chart in my box but doesn't say a word. This is worrisome, although difficult to interpret. Anything could be going on. In the eight months that I have been taking care of Deborah I have seen her seven times, and each visit has been a carefully orchestrated choreography of wills, of small concessions to serve bigger aims that leaves me exhausted. I have scored several victories of principle: Deborah now accepts prescriptions for a standard dose of AZT, as well as for her other medications, at regular monthly intervals. We count the slips out together, and the return visits for lost prescriptions have stopped. Every month I tap her groin for a few tubes of blood.
Over the course of our acquaintance, Deborah has slowly caught up on most of her routine screening blood tests, including her syphilis serology (negative), her hepatitis serology (positive), and her T-helper-cell count (disturbingly low at 19). The white blood cell called the Thelper cell is one of HIV's major targets for destruction, and the number of these cells that have disappeared from the circulation correlates fairly well with an infected person's degree of immunosuppression. If their T-helper-cell counts are in the normal 500 to 1,000 range, most HIVinfected people fight off infection quite well. The further their counts fall below 100 to 200, the more vulnerable to infection they become. I looked at Deborah's T-cell results for a long time when they showed up in my box. The process of coping with the vigorous, powerful, endlessly resourceful Deborah tended to move the real reason for our acquaintance to the very back of my mind, but here was an inescapable reminder.
When I told Deborah about her T-cell count last month, she hadn't seemed very interested. Her agenda for that visit were the itchy, infected pustules on the back of an ear she had just had repierced and the bruises over her right cheek left over from a recent mugging. She also had a few choice words to say about a psychiatrist to whom I had referred her the month before. She had begun to lobby for an increase in her Ativan dose, and I smelled trouble ahead. I hated the thought of antagonizing my new peaceful, palliated Deborah, and I had hoped that a psychiatrist experienced in drug-seeking behavior might make a few suggestions, might even take an intellectual interest in her idiosyncratic blend of personality disorders and see her regularly, might conceivably even take over the job of writing her tranquilizer prescriptions.
No such luck. Dr. Burton and Deborah did not get along. UI'm not going back there," she stated flatly. "He told me I take drugs. I don't take drugs, not in years. Any anyway, he said he's in trouble with the law. No way I'm getting mixed up with him. I stay out of trouble."
Dr. Burton, when I reached him later on the phone, had clarified somewhat. "I told her I don't prescribe Ativan. A patient stole one of my prescription pads last year and forged my name to forty Ativan prescriptions. It took a while to straighten it out." He paused. "Actually, I think it's really malpractice to give these patients Ativan. I tell them that straight out. They only sell it. You should think about what you're doing." Accurate though this might be, it was not helpful. At the end of the conversation, I tended to share Deborah's opinion of Dr. Burton.
In comparison with an oozing, crusted ear, a bruised and aching cheekbone, and the deflating experience of Dr. Burton, Deborah's T-cell count had seemed barely to register last month, and I hadn't particularly wanted to alarm her by dwelling on it. Now, glancing at her vital signs on today's clinic sheet before I call her into my room, I remember her results anew. On paper, at least, it looks like Deborah is dying.
"Patient is extremely weak with unsteady gait," says the nursing assessment. "Has no appetite. Weight down 7 Ibs. Night sweats. No cough. Blood pressure could not be obtained. Temp 98.2. Pulse thready."
It's not hard to find Deborah in the crowded waiting room. She's slumped over on the couch, head in the lap of a middle-aged man I've never seen before. A wheelchair is parked next to them, blocking the seats on the rest of the couch and forming a small clearing for their tableau. "Deborah?" I say. She barely moves. Her companion looks at me and shakes his head, exactly the way Mary had a few minutes before. "Mr. White," he says. "Deb's husband." Between us, we load her into the wheelchair and back to the examining room. From the banks of hard chairs across from the couch, the other waiting patients watch us impassively.
In the examining room Deborah's husband proves to be a man of few words. "She ain't feeling too good," he says.
"It's my ulcer," Deborah murmurs through cracked lips. "My ulcer is acting up again."
"She ain't eaten nothing in one, two weeks," supplies her husband.
"It hurts when I eat," moans Deborah. "I try to take in fluids like my aunt says but I can't." She begins to slip out of the wheelchair like a rag doll. "Can I lie down for a minute?" she asks.