Letter From Houston
Physician, Heal Thyself
What happens when a neurosurgeon who’s treated hundreds of patients with malignant brain tumors gets one himself?
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Sam set his colleagues aback by saying, “What if I undergo both therapies?” They couldn’t say with confidence what would happen, for no test involving both Temodar chemotherapy and the vaccine had been conducted on humans—only on a few rodents in labs. Figuring he had a great deal more to gain than to lose, Sam pushed the question with his doctors of whether he might pioneer a combination of the therapies. Conceivably, the experiment could shorten his life, but the research opportunity was almost unparalleled. In addition to giving him a chance to fight the disease, it would enable him to become a part of his own medical team, to inhabit the roles of both patient and doctor in the same case.
PHYSICIAN, HEAL THYSELF. The words are attributed to Christ in the Gospel of Luke, 4:23. Luke, the doctor among the apostles, wrote that Jesus was enjoying fame in the synagogues at the time but that in his sermon at Nazareth he anticipated that critics would use the proverb to mock his claims that he was the son of God: If you’re so wise and powerful, why do you hurt and die too? Medicine has a long tradition of practitioners who have taken the philosophy to heart, risking their own health in search of medical advances. In one noted example, at the end of the nineteenth century two German doctors pioneered the use of spinal anesthesia by testing it on each other. In another, a pair of Australians, Barry Marshall and Robin Warren, won last year’s Nobel Prize with proof that most stomach ulcers are caused not by stress, as was commonly believed, but by a bacteria that can be easily treated with antibiotics. Marshall launched the experiment in 1982 by drinking a concoction containing the bacteria—and making himself very ill.
William Osler, a Canadian-born doctor who revolutionized medical curriculum while teaching and practicing at Johns Hopkins during the late nineteenth century, contributed another famous adage: “The physician who doctors himself has a fool for a patient.” In most professional associations of physicians, self-medicating is discouraged. In 2003 Erik Fromme, a palliative care specialist in Portland, Oregon, co-authored a study of doctors who had terminal illnesses. The study cites evidence that doctors generally avoid using a primary care physician, insist on continuing to work when they’re quite ill, and rely on their own clinical knowledge and experience as authority. Fromme also collaborated on a 2004 survey that focused on doctors with cancer. Only one of the responding physicians endorsed self-medicating, though most admitted to having done it. Often they had misdiagnosed their tumors. “In most cases, self-doctoring means cutting corners,” Fromme concluded. “On the other hand, it seems disingenuous to ignore the knowledge and training we have as physicians and downright dangerous to ignore our instincts in order to fit into our notion of ‘good patient behavior.’”
In the realm of cancer, this country’s most publicized story of self-medicating concerns the tumor of William R. Fair, whose experience and strategy eerily foreshadow and converge with those of Sam Hassenbusch. Fair was a urologic oncologist and surgeon at New York’s prestigious Memorial Sloan-Kettering Cancer Center. In 1995 he was diagnosed with a colon cancer that proved to be incurable. In a battle that was chronicled on TV by Dateline and in the New Yorker by Jerome Groopman, Fair enlisted a colleague, Skip Heston, to create a customized therapy. Heston took a piece of Fair’s tumor and succeeded in transferring it to a petri dish, where it began to grow and could be studied. Though Fair’s colon cancer metastasized quickly, his search for a customized therapy led him to Eli Gilboa, a former Sloan-Kettering cancer researcher. Gilboa had moved on to Duke, where, with a clinician, Kim Lyerly, he devised a protocol that created a vaccine that attacked the signature protein of Fair’s colon cancer cells. Gilboa was later consulted by Duke colleagues John Sampson and Amy Heimberger when they set out to create a vaccine for glioblastoma. Their vaccine would also take its signals from protein markers to attack the cancer cells. All that serendipitously related research coalesced in Sam’s “double whammy” experiment.
What Sam is doing is not exactly self-medicating. He has essentially made himself a guinea pig, but one with strong opinions. The timing of his chemotherapy and vaccine is delicate and dicey. Every month he takes a large dose of Temodar for five days. If the chemotherapy has his white blood cells too low, the vaccine is rendered useless. Heimberger initially believed Sam’s white cell count would reach the desired level on the twenty-first day of his monthly cycle. But as Sam’s treatment progressed, he and Heimberger realized that he was reaching his target between the twenty-third and twenty-fifth day. Heimberger’s team heeded the signals and made the adjustment. Sam even worked his exercise regimen into the equation, after concluding that his two- or three-mile jogs would accelerate the recovery of his white blood cell count by as much as 30 percent. (He now makes his laps at the hospital track in a T-shirt emblazoned with the phrase “6 Foot Research Rat.”)
William Fair died of cancer in January 2002. However Sam’s experiment ends, he will have made a contribution to our knowledge of a particularly virulent strain of the disease. As he puts it: “If this proves to be a cure—if it allows me, and then others, to beat this cancer—it will be a special kind of irony. I’ll have achieved an important goal as a patient that eluded me as a researcher.”
THIS PAST MAY, I spent a day roaming the endless hallways of M. D. Anderson with Sam. He was two weeks short of making it through his first postoperative year, but as we neared an elevator he mused in frustration, “Do you know who was president when the war on cancer was declared in this country? Richard Nixon. In his 1971 State of the Union address he committed our nation to finding a cure for cancer. It was like Kennedy challenging America to go to the moon. It’s been thirty-five years,” he said, pausing long enough for me to reflect in silence that politicians nowadays hardly ever speak of that war. “Tremendous advances are being made all the time. But cancer is so many different things, and the progress is so difficult and slow.”
At one point in our conversations about his tumor, I intended to say the word “fateful” but it came out “fatal.” Freudian slip or clumsy tongue, the blunder set me stammering, but his brush-aside of it was nonchalant and smooth. Anyone in his calling erects barricades of emotional and psychological defenses, but I wondered about his physical pain. My guess was that it would be extreme.
“No, the brain itself has no feeling,” he said. “The brain’s lining is where the pain would come in—if the tumor grows and swells against it.”
We had come to the end of his rounds. The cancer patient had surged through a day that had made me weary, and the only outward evidence of his condition was a crescent-shaped scar on the side of his head. Some days he still goes for a three-mile run on his lunch hour. He assured me that he endures few of the side effects that generate horror stories about chemotherapy, just a little sluggishness and loss of appetite after the treatment. “For one thing,” he explained, “Temodar is a much-improved drug. For another, I’ve got a lot of people praying for me. I really mean that. The power of prayer is enormous in human health.”
Results from the vaccine have been promising enough that a pharmaceutical company is pursuing the patents and embarking on the rigorous procedures required for the treatment to be approved by the FDA. “It was actually easier to try the double whammy on me than it would have been on a regular patient,” Sam told me. “Just explaining it, getting all the doctors to agree. That would be very hard.” Heimberger’s research recently won a large foundation grant, and because of what Sam’s undergoing, other patients are now participating in the experiment.
“Amy has in the progress of evaluating me found a possible new ‘mechanism of action’ for Temodar,” Sam proudly said. “This observation from my blood tests on my white cells raises a whole new way that Temodar could be used to treat patients and even crosses over to a possible breakthrough in the treatment of patients with other kinds of tumors. Such is the fun of undergoing double-whammy treatment for the first time in humans with brain cancer.”
Before Sam, I’d never met anyone who would use the word “fun” to describe the terrifying experience of having cancer. In a few moments he would be heading for the garage where he parks his Victory Vegas, and I mentioned that riding a motorcycle in Houston’s rush-hour traffic would scare the daylights out of me too. He acknowledged the danger, telling me that he had to maintain constant lookout for drivers who were daydreaming or about to hit the accelerator in a sudden fidget of impatience: They’re the ones who’ll kill you.
“With the cancer,” he said, “I know I could stop doing this and give Rhonda one less thing to worry about. But she’ll tell you that when I have a good ride home, I come in sailing, a smile on my face, nothing but pleasure on my mind.”
I asked him what most compelled him to take on this rash experiment with his own health. “I’ve given my life to medicine,” he answered. “If there hadn’t been this chance to take, I would have found some other clinical study to participate in. If I’m going to die from this, I want it to be of some worth to others. And the truth is, I watch too many movies.”
It turns out he’s a sucker for John Wayne, taller in the saddle in Red River than anyone, intent on getting that herd to Abilene. He likes, Medicine Man, too, the biotech adventure in which Sean Connery plays an eccentric doctor who goes to the Amazon jungle in search of a cancer cure. And yes, The Great Escape: Steve McQueen going for broke and jumping the enemy’s fences of barbed wire on a motorcycle. They may get him, but they’ll have to run him down.
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