Kingdom of the Sick 8

 

KINGDOM OF THE SICK 8

I was released from the hospital after nearly five weeks, during
which time I’d been for the most part immobile. My spleen had been removed, I’d received numerous
blood tests several times a day and I was extremely weak, much of my muscle strength having atrophied
due to my inertia. I’d lost more than 40 pounds. But I was alive.

 

I rested at home for a month, trying to finish the novel I’d been writing before I got sick. After
a few weeks, I started chemotherapy; ultimately I would have nine rounds of it. I was lucky in that
the chemo produced few debilitating effects on me: I experienced only a slight nausea after each
treatment and felt just a small decrease in my energy level.

 

Because I was doing so well, I was eager to return to work and resume my normal schedule as quickly
as possible.

 

Initially my diagnosis had been chronic leukemia, a condition that my
doctor had told me I would have for as long as I lived. Still, he’d said, there was no reason to think that I wouldn’t be able to lead a full, normal life; it was an illness
that could be managed with chemotherapy and other types of treatment. Later, the diagnosis was
changed to mantle zone lymphoma. But I was given no reason to believe that this disease was any less
manageable than I’d been told chronic leukemia was.

 

Once I was home, though, during the time that I was recovering, I did some research on the internet and found that, in fact, mantle zone lymphoma is a much graver condition
than I had thought. Indeed, I learned, most people with it live only two to four years after diagnosis.
Needless to say, I was shocked by this discovery and very frightened by my prospects for long-term
survival. I began asking my doctor more probing questions about my chances of dying. He confirmed
the dire things that I had learned, but told me that for the past two years people with my disease had
been given stem-cell transplants with encouraging results. However, the transplants themselves
carried risks, since 15 to 20 percent of the patients given them died, succumbing to opportunistic
infections brought on by the immunodeficiencies that are a byproduct of the procedure.

 

I felt a terror that grew more palpable as weeks, then months passed and the day when I would have
to return to the hospital for the transplant got closer. Yet I was determined to do as much as I could
with whatever time I had left. I maintained a social life, one that became even more active than it
had been before I fell sick. And I continued writing with a stamina that bordered on desperation,
working on both my novel and whatever newspaper and magazine assignments came my way. If I were to
die, I reasoned, I wanted to leave behind a record of my existence. It’s an idea that has motivated
me ever since. o