The Finish Line
Dr. Tony Seidenberg has learned the hardest medical lesson of all—how to deal with his own terminal illness.
Dr. Anthony Seidenberg had seen countless blood reports, but the one he looked at on a Friday in September two and half years ago made him weep. It was his own report, and the five lines of numbers on it didn’t fall into the neat row that characterizes the blood count of a healthy person. Instead, the line showing white blood cell count jutted out, indicating that he had more than 100,000 white cells per cubic millimeter rather than the normal number of 5000 to 10,000. Immediately, one word registered in Seidenberg’s mind: leukemia.
Still wearing his jogging shorts, Seidenberg had just arrived for work at ten o’clock, after his usual morning run. An anesthesiologist at Brackenridge Hospital in Austin, he was preparing for another busy day of putting surgery patients to sleep. Now he realized that he was sicker than most people he would be working with.
The 34-year-old doctor, a six-mile-a-day runner, hadn’t been feeling well; he had been getting too tired after normally nontaxing runs. This was the first summer Tony had run in Austin’s hot weather, so he had chalked his fatigue up to the Texas heat. But when the muggy summer days turned into cool fall ones and he still felt run-down, he had a nurse draw some blood for lab tests. The preliminary results showed an elevation of the lactose dehydrogenase (LDH) enzyme, which indicates active bone marrow with a rapid turnover of cells—not a good sign but not necessarily cause for alarm. Seidenberg figured that at worst he had hepatitis, an occupational hazard. He was aware, however, that an elevated LDH level coincides with a high white cell count, making it a possible sign of more serious illnesses such as cancer or marrow diseases. As soon as he could, Seidenberg had another blood sample drawn and sent to the lab.
On this Friday morning, while the nurses and operating-room staff were preparing the adjacent suite for surgery, pathologist Jim Spidle—a man Seidenberg barely knew—gently handed him the shattering results of that second test. Suddenly the lights of the operating-room office were too stark for Seidenberg, the usually comfortable air conditioning made him shiver, and sobs were welling up inside him.
“What kind of leukemia?”
“CML,” Spidle said, placing his hand on the young doctor’s shoulder. Seidenberg needed no explication. Chronic myelogenous leukemia is a blood disease for which there is presently no cure; its victims have a median life expectancy of three years, which makes it a slow killer for a leukemia.
Seidenberg and Spidle are both specialists in fields of medicine that don’t involve extensive patient contact. Spidle, who has less face-to-face interaction with patients than Seidenberg, spends most of his time peering through microscopes, analyzing cells, and studying tissues and lab reports. He then passes those reports on to his fellow physicians, and they are the ones who must tell their patients what the numbers and abbreviations mean. Now Spidle was dealing with a doctor who was being transformed into a patient before his eyes. It was an uncomfortable, sad situation, and afterward neither of them remembered the details of those minutes very well, except to recall that Seidenberg cried.
Spidle offered to call Seidenberg’s doctor, but Tony chose to make the call himself while Spidle arranged for one of the other anesthesiologists to cover for their partner. Then Tony called his wife, Pat, knowing only too well the particular burden that would fall on her. Pat has multiple sclerosis, an incurable neurological disease that can, without notice, impair the brain and cripple the victim. With Tony now diagnosed as terminally ill, it was possible that their two children, Michael, 10, and Philip, 9, would lose both parents. For eight years—since Pat was 26—the MS hasn’t affected her much. She has had only three spells of numbness, double vision, and walking-into-the-walls clumsiness, but the possibility that those spells will worsen is always there. After talking to Tony, Pat immediately left their home in Austin’s affluent Northwest Hills to meet him at the doctor’s office. There the cancer specialist inserted a hollow needle into Seidenberg’s hipbone and suctioned out marrow from it to confirm the diagnosis. When the couple left the office two hours later, Tony had already taken the first pills for his chemotherapy.
The Seidenbergs knew that despite their shock, they needed to make a quick decision. School was over for the day, and the boys would probably be at home when they got there. The parents knew their children would realize something was wrong. “When they came home, they looked kind of sad,” Michael says. Tony and Pat gathered the family together and told the children that their dad had leukemia. Philip asked if his dad’s life was going to “zip right by” like a leukemia patient the boys had recently seen on a TV show. They told their sons that there are different kinds of leukemia and that their father had a slow-acting form. “I remember we were crying in the kitchen. It was just so sad, I can’t remember the details,” Philip says. But Michael recalls everything about that evening. “I remember thinking, ‘Why us? Dad’s a doctor, he has saved lives.’ It just didn’t seem right or fair.”
If the children had any fears that when they awoke the next few mornings their father would be visibly sicker, they were quickly dispelled. Seidenberg continued to be the same ruddy-faced, trim, athletic man. And that healthy appearance was one of the main problems. He never really felt sick, and when he looked at himself in the mirror, he saw reflected there the epitome of good health. He found himself thinking, and his family saying, that if he looked so healthy, maybe this wasn’t happening after all.
Even though Seidenberg is a physician, it was hard for him to believe that he could seem healthy and still have a process going on inside his body that would be fatal. But his medical logic wouldn’t allow him to cling to false hopes. He understood that CML is an insidious disease that might go for months, even years, without visible effects and then—bam!—one day it would take a nasty turn. His bone marrow, the body’s factory for white and red blood cell production, would then start churning out a glut of immature cells, called blast cells, that were too young to function. Those cells would proliferate and crowd out the functioning cells. The resulting shortage of platelets would fail to help his blood clot and minor cuts would bleed uncontrollably. Bruises would bleed beneath the surface of his skin, causing large black and blue swellings. The decrease in healthy white cells would make him vulnerable to infection. The red cells wouldn’t be able to carry enough oxygen, and he would develop anemia.
Seidenberg was determined to continue working, intent on leading as normal a life as possible, but his first day back at the hospital after his diagnosis was a great shock to him. He knew the other doctors must have heard about his illness, but many acted as if nothing were wrong. The only clue he had was that his friends, who usually said, “Hi, how are you?” just said, “Hi.” The doctors, who routinely talked with sick and even dying patients, weren’t equipped to deal with Seidenberg’s illness. He had to reach out to make other people feel comfortable although he himself had not become reconciled to the disease. “Several of our friends, instead of asking Tony how he was doing, would have their wives call me to inquire about him,” Pat says.
For the first time in his medical career, Seidenberg was on the other side of the fence. “After my leukemia was diagnosed, some doctors wouldn’t talk about a patient’s life expectancy when I was around,” Tony says. “Recently, though, we were all talking about a CML patient who had just had heart surgery. He had lived twelve years with this disease. We were discussing how a positive attitude can affect the course of an illness. A year ago we wouldn’t have had that discussion, and many doctors would never have talked to me about a patient who didn’t do well.”
Seidenberg very quickly became more sensitive to what most patients face when seeking treatment for a major medical problem. He identified strongly with the seriously ill patients, especially the young ones, who lay before him on the operating table. Many came to surgery for diagnostic purposes, and if they awoke to find they had cancer, their doctors frequently had little to say to them. Seidenberg concluded that patients receive virtually no emotional support at that crucial time.
In thinking about his feeling of isolation, Seidenberg realized he had never spoken to another cancer patient as a patient. He found it difficult to talk about his feelings and illness at all. Life at home, instead of providing comfort, was causing only pain. He had grown afraid to discipline the children, and in turn Pat and the kids treated him more delicately than fine china. No one wanted to offend Dad, because he was dying. The Seidenbergs finally decided to get psychological help, before the uncomfortable silences and suppressed emotions became worse than the leukemia itself.
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.”