UCLA Journal of Radiation Oncology APRIL 2023 - Flipbook - Page 34
UCLA RADIATION ONCOLOGY JOURNAL
caught dead on stage in front of an audience. He ran
his own successful small business and had a quiet
self-possession. John, though he rarely showed it,
was insecure about his slow progress in the acting
world, and I think Kevin helped him feel more at
ease.
search for a reprieve from death can take us many
places, and it is not to be pitied. But how do you also
protect your loved ones from harmful remedies and
predatory scam artists? How do you provide the best
treatment when there is no good treatment? In all
my years, all 10 of them, I had thought that doctors
knew everything, and if you went to them, you would
get better. But John wasn't getting better. Together
with his doctors, we embraced helplessness.
As a medical professional and the closest relative on
the West Coast, my father had served as the point
person for the hospice physician. He reported the
latest news: John likely had just hours to live. John's
New York family, previously shielded by distance,
was caught off guard. And there was an uproar.
The five stages of grief multiplied to twenty-five,
occurring in no discernible order—undulations of
shouting and crying and jostling that rolled through
the group like The Wave through a baseball crowd.
At first, they wanted to take him off hospice. They
looked ready to carry him out the door to the nearest
hospital. They said his decline was too sudden. It
just wasn't right. There must be something he hadn't
tried. For every desperate hope they volleyed, my
father sensitively explained what could and could
not be done, and, more importantly, he described
John's wishes. They gradually realized that saving
him was impossible, and not what John needed
anymore.
His CD4 count fell to zero. He developed skin
lesions from Kaposi sarcoma. He was repeatedly
hospitalized with Pneumocystis pneumonia. His
organs began failing. Ultimately, he decided to leave
the hospital on hospice.
It was only then that he told his parents he was gay
and had AIDS. At first, his parents couldn't believe he
was gay. They told my father it was a phase, possibly
brought on by his living in Los Angeles, a side effect
of being an actor and dancer. Later, at his memorial
service in New York, they would tell everyone he
had died of a rare cancer. My father remembers
someone asking John's mother what kind of cancer it
was, and she said, “I don't know. It's very rare.”
During my winter break from school, my family
visited John in his apartment. By that time, he had
needed to quit his job at The Cheesecake Factory
and stop taking auditions. His friends at the
restaurant had thrown him a party and still came
by his apartment most days. He lay in bed, drowsy
and mildly delirious, too weak to stand. Even in this
state, he kept trying to sit up to get us something to
eat or drink. “I have cheesecake,” he said several
times. “Let me get you some cheesecake.”
At last, everyone seemed on the same page.
Everyone but John. Day by day, he held on in his
unconscious state, not crossing that final threshold,
as if something were holding him back. John's family
became increasingly exhausted, confused, and
frustrated. They couldn't eat or sleep.
On day four of John's marathon survival, we called
in the hospice nurse. By this time, my grandfather—
John's uncle—had also arrived. The nurse gathered
everyone together and explained that it was often
helpful to talk to your loved one, conscious or not,
to say goodbye. People who are dying may feel
obligated to cling to life for their family's sake. They
may need our permission, even our encouragement,
to let go.
Just a week later, on the day after Christmas, John
lost consciousness. His kidneys weren't making
urine, and he was uremic. My father urgently
updated John's family in New York. His mother,
father, and three sisters with their husbands flew
in that day and crowded into John's small West
Hollywood apartment. For the first time, they met
John's partner, Kevin, and five of their friends, gay
men who had taken turns caring for John to make
sure he was comfortable and never alone. Kevin
was tall, elegant, and gentle. He was as introverted
as John was extroverted, and he wouldn't have been
And so, one by one, we all entered John's bedroom,
knelt beside him, and said what we needed to say.
And then, it was my grandfather's turn.
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