Physician, Heal Thyself
What happens when a neurosurgeon who’s treated hundreds of patients with malignant brain tumors gets one himself?
SAM HASSENBUSCH HAD BEEN HAVING HEADACHES. They weren’t severe—he could knock down the pain with Tylenol—but they kept coming back. He mentioned them to his wife, Rhonda, who thought maybe he’d been pushing himself too hard. At 51, Sam was full of energy, and his career was peaking. He was a senior neurosurgeon at the University of Texas’s M. D. Anderson Cancer Center, in Houston, and an internationally renowned specialist in pain research and management. In 33 years of marriage, Rhonda had seen her husband take time off only once—a few hours on the day he had had his wisdom teeth removed. His weeks were a nonstop swirl of intricate brain surgeries, patient consultations, procedures to treat cancer and chronic pain, and lectures throughout the country and abroad. He was president of the American Academy of Pain Medicine and one of M. D. Anderson’s resident experts at applying the regulatory and insurance codes that made sure doctors and institutions got paid. A soft-spoken man whose beard veils boyish dimples, Sam came to work with cowboy boots under his scrubs and habitually ate two McDonald’s cheeseburgers, medium fries, a hot apple pie, and a chocolate shake for lunch. His idea of recreation was to turn a three-mile commute in the snarl of Houston traffic into a fifty-mile cruise on his Victory Vegas motorcycle. The headaches were probably a symptom of stress, Rhonda speculated, but why not just get them checked out. Sam asked a neighbor who is a radiologist to schedule an MRI, and on May 10, 2005, he and Rhonda went to get the results.
“You can’t imagine how many times in how few seconds you can check to see if maybe, somehow, they attached the wrong name to a film,” Sam recalls. He likened the shape of the tumor they saw on the screen to a small banana or a hot dog. “The radiologist looked at it and told me, ‘Yeah, you’re right.’ Rhonda was terribly upset, of course, but unlike her, I knew exactly what that tumor meant. A three percent chance of five years’ survival.”
The neurosurgeon had glioblastoma multiforme, the most common kind of malignant brain tumor that originates in the brain and one of the most aggressive of all human cancers. Glioblastoma is so lethal because even if surgery and radiation appear to have removed the tumor, it may still have spread through the brain in tentacles, every microscopic cell on a different tear of destruction, all of them running amok. Glioblastoma claims the lives of about 10,000 Americans a year. Sam had treated about 500 brain cancer patients in the course of his career, and he had performed more than 150 surgeries to remove glioblastoma tumors. Whenever he had to break the news to patients that they had the cancer, he’d try to be upbeat about chemotherapy protocols and ongoing research, but he knew that glioblastoma typically kills half its victims within 52 weeks. With no hint of a cure, little progress had been made in treating the disease. It was a bitter dose of irony for a brain surgeon at the most celebrated cancer hospital in the Southwest to realize that the very kind of tumor that had most defied his training and skill was now growing inside his skull.
That night, when Rhonda finally slept, Sam’s thoughts raced in lonely and jumbled horror. “What’s our real estate worth? How good is my life insurance? My retirement plan? My disability? I did sign up ten years ago for that disability plan, didn’t I? Did thirty-one years of medical study and practice as a neurosurgeon just go down the drain? With a brain tumor, will I be allowed to operate on anybody? Am I going to be debilitated? In a wheelchair? Unable to ride my motorcycle?”
On and on his fears sped—a long night of the soul. “But I’m obsessive-compulsive,” he said, “and the next morning I was in the office planning details of my surgery. This person would be the anesthesiologist, this would be the scrub nurse.” He asked two longtime colleagues, Fred Lang and Raymond Sawaya, to perform the surgery. “I wanted two neurosurgeons because of the tumor’s deep edge and because it’s better for them psychologically if something goes wrong. A neurosurgeon decides how far and how deep to cut but rarely walks out of the surgery saying, ‘That was perfect.’ There’s always a gray area when dealing with the brain.”
After his diagnosis, it took Sam about three days to steady himself, to “land on my spiritual base,” as he put it. He was brought up in the Reform Judaism faith in Saint Joseph, Missouri, where he met Rhonda when they were in their teens. He was educated in Catholic school, and one night on a date she gave him a copy of the New Testament as a gift. At Johns Hopkins University, in Baltimore, where he went to undergraduate school and continued with his medical training, picking up a Ph.D. in pharmacology along the way, he became a devout Christian. Sam is a lay biblical scholar and a fundamentalist whose faith is Scripture based—not long ago he was rereading the entire New Testament every 21 days—but there’s nothing in his manner of the bristling and domineering evangelical. He was an elder of churches when he and Rhonda lived in Maryland and Ohio, and in Houston they had joined a congregation called the Four-Square Church. A large part of its appeal to him was that 20 or 30 percent of the members shared his passion for riding motorcycles.
“In both Judaism and Christianity,” he said, “there’s a Bible passage of great importance: Genesis 22. Abraham is going up Mount Moriah with his son Isaac, who’s saying, ‘Where’s the ram? I thought we were going to make a sacrifice.’ Abraham doesn’t want to tell Isaac he may have to be the one offered, and he says, ‘God will provide,’ ‘Jehovah-jireh’ in Hebrew. And God does. They find the ram stuck in some thorns.” In different ways, through different vessels, he chooses to believe God will provide for him.
Neurosurgeons often operate immediately upon seeing evidence of glioblastoma, but Sam was determined not to let his illness overwhelm the lives of his children. He and Rhonda decided to put the surgery off for ten days; they didn’t want to darken a long-planned celebration of their daughter’s graduation from Vanderbilt University. The Hassenbusches also have two sons, one in Colorado and one who’s pursuing an MBA at the University of Houston. The son pursuing an MBA said, on seeing his dad’s MRI, “You don’t have to be a brain surgeon to know that’s a primary malignant tumor.”
The May 20 surgery went well, and Sam’s colleagues were able to remove the cancer from high and deep in his right temporal lobe. Because of the location of the growth, his cognitive functions were not in immediate peril, and from his hospital bed the next day he e-mailed colleagues that he was ready to get back to work. He also made some calls. Amy Heimberger, an M. D. Anderson neurosurgeon and immunologist, recalls that Sam was barely out from under the anesthesia when the phone rang in her office. “An assistant on our team hung up and said, ‘I just got a call from Dr. Hassenbusch. He wanted to make sure we had gotten his tumor specimen.’ She was really flustered, so I said, ‘Well, have we? What’s wrong?’ She said, ‘Oh, it’s not that. I’ve just never gotten a call from a patient in intensive care.’”
Sam wore an eye patch at first because the surgery had left him with slight double vision, but in four days he was participating in staff meetings. A week after his operation he performed a nonsurgical pain procedure on a patient, and on the eighth day he got back on his motorcycle. After he’d gone through the rounds of radiation and initial chemotherapy, he decided that he would keep his head shaved. He thought it enhanced his look as a biker.
The most remarkable display of the doctor’s mettle and faith came when colleagues presented his postsurgical options. Sam’s neuro-oncologist, Mark Gilbert, told him he must start a course of a fairly new chemotherapy drug called Temodar, or temozolomide. Taken in capsules, Temodar acts directly on DNA and inhibits the growth of all cells, including cancerous ones in the brain. After the initial concentrated dosage, it’s employed as maintenance, for years, to fight the deadly tentacles of glioblastoma. Appraising the chemotherapy, Sam said, “Temodar has been very effective when the cancer first appears. Less so if it comes back.”
Heimberger urged him to consider instead a promising vaccine that she had helped develop as part of a research team at the Duke University medical school. Between 30 and 50 percent of brain tumors have on their surface a single type of protein, or cell “marker.” The experimental vaccine contains a synthesized version of that protein. The vaccine stimulates the entire immune system, and it activates a cell that attacks any cell that has the marker. Heimberger told Sam that his glioblastoma cells were studded with the distinctive protein; relatively young and otherwise healthy, he was an ideal candidate. The test group of patients who had received the vaccine was small, but the results were encouraging. The median survival for those trying the vaccine is 29 months, compared with 14 months for those treated with the most current chemotherapy and radiation and a bleak 4 months for those who are untreated.
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.