Health
The Finish Line
Dr. Tony Seidenberg has learned the hardest medical lesson of all—how to deal with his own terminal illness.
Debra Nelson says: I was just wondering if Tony was the son of Morrie, brother of Esther? I knew his dad and sister and was just wondering how Esther was and how he himself was doing? Morrie talked alot about him. Could you send this to him? (August 10th, 2009 at 12:25pm)
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Tony was the first to see a psychotherapist, then Pat went, then the children. Eventually, the family received counseling together. Over the six-month period of the therapy Tony gradually disciplined himself to stop thinking about his death as much as he had at first. During the early months, each morning when he awoke, his first conscious thoughts were overwhelming: “You have leukemia,” he would say to himself. “You’re going to die.” Two years after the diagnosis, Tony admits, “I can’t honestly say a whole day has passed without my thinking about the leukemia, but now I don’t have that feeling of heavy depression I had in the earlier days.”
Seidenberg began to focus more on the treatment available for his disease, and he started sounding out his friends who were cancer specialists. But his attempts to double-check his own doctor’s approach to his illness were rebuffed. One physician even told him he didn’t want to second-guess Seidenberg’s doctor. In essence, he met the same polite resistance that average patients encounter when they try to elicit comments about treatment or therapy from doctors other than their own.
Seidenberg’s doctor advised him not to study the medical literature on his disease. Doing that, his doctor said, would lift his spirits when he read positive articles and plunge him into despair when he read of fruitless research. Nevertheless, Seidenberg is still drawn occasionally to the articles about CML in medical journals. “If I hit on the negative points, they tend to stick in my mind longer than the positive ones. Then I quit reading for a while.”
Seidenberg also found himself noticing the flashy NEW CANCER CURE headlines in the National Enquirer on the supermarket rack. “I began reading about Laetrile and other treatments that as a physician I considered irrational approaches, things I couldn’t accept as a doctor but that as a patient I sought emotionally. I read these things, still disregarding them on the whole, but a tiny part of me sought them out.”
Seidenberg’s doctor referred him to M.D. Anderson Hospital Research and Tumor Institute in Houston for an experimental bone marrow transplant program there. “The main thing I remember about my first trip to M.D. Anderson is that big sign in front and the words ‘Cancer Center,’” Tony says. “I had heard of M.D. Anderson all my medical life and I said to myself, ‘My God, I never thought I’d be coming here as a patient.’”
Although M.D. Anderson is a grim scene, Tony was not too taken aback at seeing the disfigured patients who roamed the crammed waiting rooms. “The people who affected me the most weren’t the ones with the radiation marks, because they tended to be older patients,” he recalls. “But I found myself looking at a patient in a wheelchair beside me. He looked younger than I was and he looked real sick. I couldn’t help thinking, ‘For all I know he’s got CML and is farther down the road than I am.’” Seidenberg’s identity as a doctor was quickly overshadowed at M.D. Anderson by his identity as a patient.
In the bone marrow transplant operation, marrow is removed from the bones of cancer patients during the early stages of the illness and then reinfused during the blast crisis when the disease takes its usually fatal plunge. Seidenberg’s marrow that is now in the research center’s liquid nitrogen freezer is not as diseased as his marrow will be in the last stage of his illness. However slim it might be, the hope behind the transplant program is that the reinfusion of the early-stage marrow will buy time for CML patients until techniques of transplantation can be further developed.
Doctors at M.D. Anderson twice have put Seidenberg under a general anesthetic for the hour-long procedure, which involves inserting 60 three-inch needles into the upper portion of his buttocks and puncturing the large hipbone. Syringes are then affixed to the silvery, hollow needles, and 1500 cubic centimeters of marrow are suctioned out, much of which is liquid that isn’t preserved. The dense residue—only about 80 cubic centimeters—is composed of the white blood cells that will be saved and frozen. The patient is left with fifty to sixty punctures and a very sore bottom, though not sore enough to keep him from returning home the same day. Seidenberg is remembered by the M.D. Anderson doctors not so much because he, too, is a physician but because he asked how quickly he could start his running again.
The transplant specialists who treated Seidenberg say it is easier to work with a patient who is a doctor himself because he can understand the disease process and the research. But, they say, it is quite a bit tougher for the physician-patient to live with the diagnosis of his disease. Lay patients don’t necessarily know the worst that can happen; physicians do.
Tony and Pat have become involved in helping other people face terminal illness and relate to terminally ill patients. They decided that some sort of support should be available to cancer patients to give them and their families a chance to talk about their illness. With a team of Austin oncologists and medical social workers, they formed the Austin Family Support Group for terminally ill patients and their families. The group steers clear of discussing pros and cons of medical therapies, dealing instead with social support, family problems, and other complications that arise from fatal illness.
In addition to developing the support group, Pat and Tony have spoken to University of Texas sociology classes about death and dying. One of the recurring questions from students is whether having leukemia has affected Seidenberg’s relationship with his patients. His answer is an unequivocal yes. Doctors are taught in medical school about treating patients who have terminal illnesses, but the lesson is cursory. “The average doctor isn’t intuitive enough to come to terms with the patients’ anxieties, doubts, and fears,” Seidenberg says. “I found I had been missing a lot of clues, little things that now tell me, ‘Gee, this person is really worried.’ If I hadn’t had my personal situation, I don’t know if I’d ever have arrived at that level of intuitiveness. It has enhanced my ability to function as a physician.”
Seidenberg says he now visits with patients longer before their surgery, asks if they have any questions, and tries to draw them out if he senses they have doubts. “I pay more attention to little things that as a patient I’ve learned are important,” Tony says, “like telling the family about the intensive care unit’s visiting hours—little things that help relieve the stress, especially during the first few days.”
Doctors, for very good reasons, are taught not to get emotionally involved with their patients: it would do neither of them any good if both were emotional wrecks. But in the effort to stay detached, doctors have perhaps stepped back too far. Where is that fine line that separates attentive, sensitive counseling from excessive involvement? Seidenberg doesn’t have that answer yet. But his concern about this dilemma has rekindled the interest of some of his colleagues and that, says one cancer specialist, will be Tony Seidenberg’s legacy. The doctor says Tony has taught him a lot, renewed his sensitivity, prompted him to pause and look at each patient as more than “just another point on the statistical curve.”
In five months Seidenberg will reach the median statistical point at which a CML patient succumbs to his disease. For every average, of course, there are patients who do not live that long and others who surpass it by years. Seidenberg has thought much about what will happen when the final stages of the blood disorder has set in. “As a physician, I’ve seen enough instances in which the quality of a patient’s life has been sacrificed for the benefit of prolonging it for a couples of days,” Tony says. “I don’t want that.”
How much will he endure before he’s ready to call a halt to heroic efforts to keep him alive? “It depends,” he says, “on what the doctors in the experimental bone marrow transplant program are trying to accomplish. The program, I know, is not a curative one, but if there’s a chance it can prolong life for two to three years—and a chance that within that time a cure might be discovered—I’ll go along.” But if the only objective is keeping him going as long as possible, with no consideration for the quality of his life, well, he doesn’t think he’ll agree to that.
Seidenberg has also reviewed his life and has come to the conclusion that there aren’t many things he wanted to do but didn’t. He is satisfied with his life as it is and has been—his practice of medicine, the time with his family, the hours spent running. There is one thing, though, that despite his newfound sensitivity, he hasn’t done yet. He has not faced another patient who has CML and sat down with him to say, “I know what you’re going through. I’ve got it, too.” He’s thought about doing that but says, “I’m not sure I wouldn’t break.”
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