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Hope and Disappointment

By the spring of 1995, however, things were going badly again.

Lyons's lesbian partner, a woman named Rhonda, was dying of AIDS. With her friend's end near, "the reality of the inevitable really hit me," Lyons recalls. When she went to a funeral home to pick out a casket and flowers for Rhonda, she decided to make all the arrangements for her own funeral, as well.

"The funeral director and I, we had a nice talk. I told her, 'Please do not let my mother put me in a dress,'‚" she says today, a whisper of a laugh in her voice.

Rhonda's death, combined with Lyons's heavy schedule as the night manager of a drop-in center for HIV patients, brought an end to the surviving woman's health. She began to feel weak. Bouts of thrush, a yeast infection of the mouth she had gotten periodically for years, worsened and came more frequently. She dropped to 92 pounds and moved into size 2 jeans, then size 1.

One day, she got out of the bed and fell on the floor. When she finally made it to the doctor, "I could tell when I walked in the office by the look on his face — I really thought it was check-out time."

Lyons was admitted to a hospital. Among the many tests her physician ordered were two that measured the state of her HIV infection. The first, called the CD4 count, measures a class of white blood cells crucial to the immune system. The usual count is between 800 and 1,200 cells per cubic millimeter of blood. Hers was just under 100. The other test was a new one, which estimates the amount of HIV in the blood. There's no normal range for "viral load," but the higher the count, the worse the prognosis. Lyons's was 500,000 — very bad.

The doctor told her to stop work, go home, rest and try to gain weight. He also suggested she begin a new antiviral medication as part of a strategy to suppress the virus as much as possible.

She agreed to try it. Years before, she had taken AZT, the first drug for HIV. It turned her fingernails black and made her nauseated, and she didn't stay on it long. The new one caused problems, too, but her doctor urged her to stick with it, which she did. The worst side effects slowly lessened.

Something else happened, too. She started feeling better.

Over the next six months, her doctor added two more drugs, one of them saquinavir, the first member of the ultra-potent antivirals of the protease inhibitor family, which came on the market in December 1995. Her appetite improved and her weight rose to 110 pounds, which was very close to what it had been before she got sick. It was no longer an effort to climb stairs. The thrush disappeared.

Last fall, she went on a feminist retreat in the Poconos and took a three-hour hike up a mountain. It was something she thought she would never do again in her life.

On a warm day, she sits in the living room of her Philadelphia row house, drinking iced tea. She's dressed in white. She is thin, but not gaunt.

"Now, I can play ball again. I ride my bike downtown. Before, it was an effort to do anything."

Article Continues

© 1997 The Washington Post Company

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