WEDNESDAY, April 11, 2007 (HealthDay News) -- Andrea Kott's brother Steven died in 2004 after a 16-year battle with a rare form of cancer.
His was not a "good" death. He had tumors protruding out all over his body, was in constant pain, could not eat or drink, and long ago had had to give up his passion -- teaching.
"But even then, disabled and tormented, Steven clung to life; and I, a health reporter specializing in end-of-life care and the right-to-die movement, couldn't understand why," writes Kott in an opinion piece published in the April 11 issue of the Journal of the American Medical Association.
Steven's journey from life into death was, for Kott, an equally significant parallel journey.
"I first came at it with an arrogance. I've been writing about death and dying and I'm thinking, why would anybody want to keep going," she said during an interview. "When it got close, I started changing my mind. I couldn't bear to think of him not being in the world any more. It never occurred to me (earlier) that the suffering brought an extra richness and value, the person is still the same person, the relationship with that person and the people who love them is still the same relationship. They're still there."
Steven, who lived in Kent, Conn., was 44 in 1988 when he was diagnosed with a chordoma, a rare tumor that usually originates on the spine but eventually radiates to other bones throughout the body. Doctors removed the original tumor along with his tailbone and the nerves that controlled bowel, bladder and sexual function.
"If you had asked me when I was in my 20s and healthy what I'd choose -- death or life without being able to make love the old-fashioned way -- I'd probably have said death," Steven told Andrea a few months before his death.
Ultimately, he chose life, as many do.
"There are so many different ways that people experience their illness, but there's nothing unfamiliar about this story," said Dr. Michael Fisch, medical director of the Community Clinical Oncology Program at the University of Texas M.D. Anderson Cancer Center in Houston. "He was striving to live and hold onto the things he valued the most in the face of very difficult circumstances."
At 50, Steven, a college literature professor, took up the violin, a lifelong dream, learning with a class of fifth graders at a local elementary school. He resumed teaching, took a second honeymoon with his wife in the Cayman Islands and won a Fulbright scholarship to teach in England.
He had five years of clean MRIs before the cancer returned, this time to his collarbone, effectively ending his budding violin career.
"This disease is not life-threatening," he said at one point. "It's life-style threatening."
But the tumors eventually took over. "From then on, every scan identified new tumors, wrapping around his ribs, strangling his sciatic nerve, and penetrating the membrane around his brain," writes Kott, who lives in Sleepy Hollow, N.Y. "They grew inside his body and then pushed their way out. One engulfed his vocal cords, making it look like he'd swallowed a tennis ball."
But Steven continued teaching, hiding tumors under big sweaters and wearing a microphone headset "like Madonna" after the surgeon removed his vocal cords. Toward the end of his life, tumors forced him to walk bent at a 45-degree angle, leaning over a walker.
Near the end of her brother's struggle, Kott found herself wanting him to cling to life -- yet also wanting him to let go.
"It's such a delicate balance between life and death, between whose suffering matters," said Kott. "The bottom line is that it's the patient's suffering, not the people around the patient."
"It's very easy when death is an abstraction to make pronouncements," she continued. "When death is staring you in the face, you can't know, you don't know. Steven taught me that. He taught me that there's no knowing from one minute to the next."
For more on end-of-life issues and cancer patients, visit the U.S. National Cancer Institute.