Roll Forever 
Nothing To It
That was my son Mark’s favorite expression, and it perfectly defined his upbeat, self-assured personality—even in his last days battling leukemia
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Aubrey Thompson, a friend at the University of Texas Medical Branch at Galveston who has done leukemia research for twenty years, told me that Mark may have had chronic leukemia for the past ten or even twenty years, even though no one had detected it. “What makes adult leukemia so extremely difficult is that the cancer cells come and go, hiding out most of the time,” he said. “You go along for years, having a few bad days when you feel tired or run-down or flulike; then one day it explodes into acute leukemia. In childhood leukemia, by contrast, the cancer cells are very active. They come out of hiding and grow rapidly, and therefore they are sensitive to certain drugs and can be wiped out.”
A bone marrow transplant is the only complete cure for leukemia known at this time, but the process is long and dangerous, littered with formidable obstacles and treacherous ifs (if chemotherapy can force the cancer into temporary remission …). The transplant procedure is enormously expensive—it can cost up to $250,000—and it’s highly risky: Between 40 and 60 percent of those who undergo a transplant survive, and some survivors of the bone marrow transplant later succumb to fatal complications from graft-versus-host disease.
Of course, to have a transplant you must have a matching donor, another treacherous if: One in four leukemia patients who need a transplant never find a donor. Part of the problem is that most people have never heard of the National Marrow Donor Program. Among all diseases, leukemia is the number one killer of children—and it afflicts ten times as many adults as children—yet it is not high-profile. In a nation of more than 267 million people, fewer than 3 million are on the registry and fewer than 600,000 are minorities. Another problem is money. Because genetic tissue typing is so expensive, most people who are tested are asked to pay a fee, usually between $45 and $75 (since there are so few minorities on the registry, their tests are free). The cost aside, however, getting tested is really pretty easy. It takes only a couple of minutes: You fill out a short medical history and let a technician draw two small blood samples, which are sent to a national laboratory to be analyzed for the antigens needed to make a match; the identity codes of the antigens are then recorded in the national registry’s computer. If your antigens match a leukemia patient’s, you’ll be called in for more tests. Six out of six matching antigens are a “miracle match.”
At any point, of course, a potential donor can back out. Shirley Laine, the bone marrow manager of the Central Texas Regional Blood and Tissue Center in Austin, told me the heartbreaking story of Victor Ojeda, a nine-year-old Austin boy who died after a woman who was a perfect match decided she didn’t want to go through the ordeal of a transplant. It’s not really that much of an ordeal, though. As a donor, you spend a day or two in a hospital, during which time a needle is injected into your hip and marrow is extracted from the upper back part of the pelvis. You’ll have a sore butt for a week or two, but that’s a small price for saving a life. (To find the blood and tissue center nearest you, call 800-MARROW-2.)
I know now that even if we had found a miracle match for Mark, a transplant would have been useless. All that horrible chemotherapy had destroyed his immune system and had done great damage to his organs, but it never came close to stopping the cancer or putting it into remission. Mark’s doctor, Daniel Dubovsky, compared cancer cells to cockroaches: “You might kill ninety-five percent of them,” he told us, “but the remaining five percent emerge stronger and more resistant.” Dubovsky encounters only one or two patients a year whose cancer is so virulent that it resists the strongest chemotherapy. Mark happened to be one. “He lived nine or ten months longer than a lot of people who do go into remission,” Dubovsky said. “He had magnificent strength and energy.”
Two and a half weeks after our journey to the Chihuahuan Desert, while Mark was in the hospital, Dubovsky informed him that there was nothing left he could do. We were devastated. Markie said he’d like to go home.
PHYLLIS AND I FLEW TO ATLANTA FOR the deathwatch, not sure how we would handle it but trusting that Markie would set the style. Getting reacquainted with his longtime group of pals, we realized he’d set the style years ago. In high school he had put together a combination rock band and chili cookoff team called the Chain Gang, and they were with him until the end, honoring his wish that nobody feel sorry for him or for themselves. Tom “Meat” Smith, Markie’s oldest friend, sat at the foot of his bed and regaled us with stories about the Great Cartwright. It seems that the women of Atlanta were not quite unanimous in their devotion. Meat told us about one woman Mark jilted when he worked for the Turner Broadcasting System. To this day, she is unable to speak his name without pausing to spit on the floor. Meat demonstrated, feigning a high-pitched voice: “Oh, you must be referring to Mark … hock, spitooowee … Cartwright.” Sick as he was, Mark doubled over with laughter.
Also on hand was the latest and last of Mark’s girlfriends, Susan Shaw. She was as tough and as tenacious as they come. Almost single-handedly she had organized a drive that put five hundred new names on the bone marrow registry. She could have bailed out at any time—no one would have blamed her—but Susan wasn’t the type to bail. The only time she lost it was the day Dubovsky told the family it was over. “It wasn’t supposed to be that way,” Susan said later, her eyes swollen and red from a day of crying. “I had imagined our twilight years, sitting on the porch watching our grandchildren. Suddenly I just went to pieces. I was crying and calling out to God, saying, ‘Why Mark? Why me?’” Soon after, Susan got a phone call from the National Marrow Donor Program, telling her that she was a partial match for a 54-year-old man in the Midwest. “God works in mysterious ways,” she concluded.
What got us through those last few weeks was Markie’s remarkable courage, the grace, dignity, and measured good humor with which he faced death. He had resolved to put his affairs in order, and that’s what he did. He dictated a will and made it known that when the end came he didn’t want the paramedics to resuscitate him. He asked that his body be cremated and his ashes scattered in the Gulf of Mexico. (One exception: Some of the ashes would be handed over to the Chain Gang, whose members would select an appropriate urn—most likely a cowboy boot—and take them each year to the chili cookoff in Athens, Georgia.) He selected a Cajun friend, Jonathan “Gator” Ordoyné, as his replacement in the Chain Gang.
I asked him if he was scared. “No,” he said, “strangely enough I’m not.” He had been sick for so long that what he really wanted was just “a few good days.” That became my prayer: “If you can’t give us the miracle of sparing his life, Lord, then grant our fallback position: a few good days, then let him die quickly and without pain or fear.”
My prayer was answered. Markie seemed to get better by the day. He got out of bed and spent several hours sitting in the sun. He was able to eat solid food and even hold down cups of the creosote tea. He went to a couple of movies with Susan, and the three of us spent an afternoon at the Atlanta Botanical Garden. We drove the rural back roads, where spectacular explosions of azaleas, redbuds, and dogwoods seemed to have blossomed specifically on Mark’s behalf, and had dinner at his favorite Mexican restaurant.
The time had come for me to go home, we both agreed. “You’ve got to go sometime,” Markie said, not unaware of the double meaning. My last night in Atlanta we had dinner at his favorite Thai restaurant, then Mark and Susan drove me back to my hotel. Standing there face to face in the parking lot was the hardest part. Neither of us wanted to drag it out. Mark kissed me and said he loved me. I said I loved him too. “I can’t bring myself to say good-bye,” I told him. “So, until I see you again.”
“Until I see you again,” he told me back. I turned toward the hotel entrance, knowing it wouldn’t be in this lifetime.
After that we talked daily by phone. Mark told me that he and Meat were driving to Augusta for the opening day of the Masters golf tournament. On Friday, April 11, he flew to Little Rock to visit his children, nine-year-old Katy and seven-year-old Malcolm. It was an act of sheer will: His fever had returned, signaling that the brief reprieve was over. He somehow made it back to Atlanta on Sunday afternoon and died early the next morning. His last words were to Susan. “I think this is it,” he said softly, closing his eyes. “I’m packing ’em in.”
DEALING WITH THE “WHY” QUESTION is the ultimate test of faith. It took me a while to realize that God is not there to answer “Why” questions, though He can help ease the other emotions that overtake a parent whose child dies: the guilt, the frustration, the anger. What should I have done? What could I have done? Phyllis told me that when her son Robert was dying of AIDS in 1994, she had an irresistible urge to hold him tightly, as though she might transfer her energy and her wellness to him. I felt the same urge.
Anger was the emotion that hit hardest and lasted longest. I was angry at his doctor and at the hospital for allowing him to waste away; there must have been something else they could have done. I hated the entire pharmaceutical industry for wallowing in profits while its researchers consistently failed to find cures. I even called my pal Aubrey Thompson to vent my anger. He assured me that research was doing the best it could.
I no longer waste time on guilt or anger. I miss Markie and think about him almost constantly—not the way he was at the end but the way I knew him for forty years. He hated negative energy. He wouldn’t have had it any other way.
Below you’ll find links to information on how to become a donor, as well as general knowledge about the disease and its treatments.
Adult Leukemias
National Transplant Assistance Fund
International Bone Marrow Transplant Registry
National Marrow Donor Program Online
Bone Marrow Donor Worldwide
Leukemia Society of America
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