Miracles We Have Seen

by Harley Rotbart

  Spiegel, D., J. R. Bloom, H. C. Kraemer and E. Gottheil (1989). “Effect of psychosocial treatment on survival of patients with metastatic breast cancer.” Lancet 2(8668): 888–891.

  Spiegel, D., L. D. Butler, J. Giese-Davis, C. Koopman, E. Miller, S. DiMiceli, C. C. Classen, P. Fobair, R. W. Carlson and H. C. Kraemer (2007). “Effects of supportive-expressive group therapy on survival of patients with metastatic breast cancer: a randomized prospective trial.” Cancer 110(5): 1130–1138.

  Spiegel, D. (2011). “Mind matters in cancer survival.” JAMA 305(5): 502–503.

  For more on existential psychotherapy, see:

  Yalom, I. D. (1980). Existential Psychotherapy. New York, Basic Books.

  Yalom, I. D. (2008). Staring at the Sun: Overcoming the Terror of Death. San Francisco, Jossey-Bass

  For an extensive review of the literature on group therapy’s impact on breast cancer survival, see:

  Mustafa, M., A. Carson-Stevens, D. Gillespie and A. G. Edwards (2013). “Psychological interventions for women with metastatic breast cancer.” Cochrane Database Syst Rev 6: CD004253.

  For more information on the benefit of marriage on cancer survival, see:

  Aizer, A. A., M. H. Chen, E. P. McCarthy, M. L. Mendu, S. Koo, T. J. Wilhite, P. L. Graham, T. K. Choueiri, K. E. Hoffman, N. E. Martin, J. C. Hu and P. L. Nguyen (2013). “Marital status and survival in patients with cancer.” Journal of Clinical Oncology 31(31): 3869–3876.

  9

  Paying It Forward

  Patients and families, grateful for the miracles they’ve received, may seek to channel that gratitude into meaningful action on behalf of others. Those actions can have dramatic impacts and help create miracles of the future. Three of the essays in this chapter describe such phenomena—the amplification of one miraculous outcome to create many more.

  Two other essays describe young people, the beneficiaries of medical miracles in their own lives, who were then inspired to pursue medical careers that have benefitted countless others.

  Date of event: 1995

  Sharing the Miracle of Hope

  Trevor J. Bayliss, MD

  I never thought I’d end up being a doctor. I never even thought I’d survive long enough to graduate college. But today I am an oncologist, a physician specializing in the treatment of patients with cancer. Twenty years ago, I was a college freshman diagnosed with terminal cancer, given only weeks or, at most, months to live. My survival was a miracle, for which I’m grateful every day. This is my story.

  * * *

  I had been a star runner and ice hockey player in high school. Competing in those sports had become a passion and a part of my identity, and when I enrolled at Williams College I had plans to continue my athletics. But as soon as I began training with the cross-country team in the fall of my freshman year in 1994, I knew something wasn’t right: I was too easily fatigued, couldn’t maintain the times I had run in high school. The same thing happened when I tried to play hockey that winter. I was exhausted, no energy, and felt drained after every practice.

  In the spring when I went out for track and field, I also noticed my abdomen was getting bigger. Others noticed, too. During a swimming pool workout with the track team, my coach called out, “You look like you’re pregnant, Bayliss.” Indeed, I did look pregnant, but it turned out the growth inside of me was my spleen, which had enlarged to massive proportions. The spleen is the organ in our body that filters our blood; when it gets clogged, it swells.

  In the summer of 1995 a thorough medical evaluation discovered I had a rare (fewer than 100 cases each year in the United States) form of blood cancer, called T-cell LGL (for large granular lymphocytic) leukemia. I had surgery to take out my spleen, which the doctors said would make me feel better immediately, and it did. The surgeon told me it was the largest spleen he had ever removed, which for a naturally competitive guy like me, gave me a somewhat perverse sense of achievement. The extreme fatigue I had been feeling, the doctors explained, was surely due to the anemia caused by my blood cells being trapped in my enormous spleen, unable to filter through because of the leukemia cells that were clogging it.

  Because most cases of this type of leukemia are very “indolent,” or slow-growing, my doctors didn’t feel I needed additional therapy at that time, in hopes the leukemia cells would remain dormant. I was put on a “watch and wait” plan, which was a difficult concept—knowing I had cancer inside of me, but doing nothing about it. Things continued okay through my sophomore year of college; it seemed I did have the usual indolent version of this leukemia. Although unable to participate in sports, I was feeling well overall. Yet I was always anxious about the idea of this disease lurking inside of me.

  As my junior year of college began, friends began commenting that my lips looked a little bluish. One day I climbed half a flight of stairs in my dorm and found myself hunched over trying to regain my breath. I was startled by that event and went back to my doctor, who saw suspicious shadows on my chest X-ray, confirmed abnormalities on a chest CAT scan (a special type of X-ray), and suggested a lung biopsy. The biopsy found the leukemia had infiltrated my lungs and, by so doing, declared itself to no longer be “indolent.” Further testing found leukemia cells in my liver as well. “Watch and wait” would no longer be sufficient.

  Unfortunately, my version of T-cell LGL turned out to be unusual in a number of ways, not the least of which was that it usually occurred in sixty-year-olds, and I was nineteen when I was diagnosed. But much worse, although T-cell LGL usually is either aggressive from the beginning or indolent throughout its course, tests showed that what was initially behaving as an indolent leukemia in me had transitioned to the aggressive form seemingly overnight. My oncologist said I needed to start chemotherapy immediately, a combination of four drugs that I tolerated pretty well except for a day of fever, predictable with each cycle of treatment, and some general fatigue. I didn’t have to be hospitalized for the therapy and I was still able to attend a couple classes during November and December of my junior year. But the cancer didn’t disappear on this chemotherapy protocol, and my doctors said a bone marrow transplant was my only hope of surviving this now-aggressive form of T-cell LGL.

  I traveled with my mom to a famous cancer and bone marrow transplant center on the West Coast where I would receive the transplant. Bone marrow transplant replaces a patient’s bone marrow (where blood cells are made, and this type of cancer resides) with an infusion of bone marrow stem cells from a matched donor. Although I didn’t have a match in my family, the National Bone Marrow Registry located a match from an anonymous donor. Bone marrow transplant is a dangerous procedure for many reasons. Before the transplant, the patient has to have very intensive rounds of chemotherapy, much harsher than what I had received before, in an attempt to wipe out every cancer cell before the transplant. The chemotherapy also wipes out a lot of normal cells. I went through this treatment and became very debilitated, physically and emotionally. Following the intense chemotherapy, a patient must then have whole body radiation to wipe out his immune system so his own body won’t reject the transplanted bone marrow. Without an immune system, a patient is prone to serious infections. Finally, after the transplant, the new bone marrow itself can attack the patient’s body, something called graft-versus-host disease.

  Following my chemotherapy, though, all of those concerns about the additional dangers of the upcoming bone marrow transplant became moot. A meeting was called one week before the scheduled transplant with me, my mom, the oncologist at the cancer center, and a nurse. The oncologist entered the room quietly and sat across the table from me. I could quickly tell by her awkward manner and the uncomfortable look on her face that this was not going to proceed according to plan. Something had happened. My cancer had not responded well even to the intense chemotherapy of the past weeks; it was now advancing in my lungs, reducing the amount of oxygen in my system. I needed to receive supplementa
l oxygen from a tube in my nose hooked up to a portable oxygen tank. And then the final blow: because of these new developments and the results of the latest round of tests, there was now a 95 percent chance the bone marrow transplant procedure, if performed, would fail and perhaps even kill me. There were no good options left. After a painful silence in the room, I asked the question cancer patients given terminal diagnoses often ask: “How long do I have?”

  The oncologist’s answer: “Months, maybe only weeks.” As I absorbed the words I felt a lump forming in my throat, tears welling in my eyes, and I knew I had about three words I could get out without completely breaking down. I turned to my mom, who was obviously devastated by the news, and said, “Let’s go home.”

  The night after my meeting with the doctor I lay in bed crying, for the first time accepting that I may die very soon. As I did, I surprisingly felt a peace come over me, a lifting of the fear. And just as quickly I found myself planning for the future. Initially it was only the immediate future of getting home and seeing my family and friends. As I flew home two days later, at 30,000 feet wearing oxygen, I replayed in my head that last meeting at the cancer center. I realized how hard it must have been for the doctor to say what she had to say, but at the same time, I found myself thinking, I could do that well. I could do that better, and with more compassion, than that doctor had done. As sick as I was, leaving there with no hope, that was the first inkling I had that I wanted to be a doctor, I wanted to help people with cancer. How impossible, even delusional, that felt at the time.

  The oncologist’s answer to my “how long” was what we now call “evidence-based,” meaning that it comes from careful analysis of scientific data from published medical literature and from doctors’ own experience with their patients. It’s an average, a bell-shaped curve. At the middle of the curve, patients in my situation survived weeks to months, just as the doctor had said. But there was something about how the oncologist said it that disturbed me; I was not a statistic. There must be factors that determine which patients live longer than the average, and which live shorter than the average. As I wrote in the Dartmouth Medicine magazine several years later:

  Perhaps it’s the biology of their cancer cells, or perhaps certain personality or attitude traits. I tended to hold to the latter view and believed that if I faced my illness forthrightly, meditated, visualized, and fought, I’d be among those who lived longer than average.

  Some doctors stayed away from statistics, and I preferred that even more. The ones who used statistics wanted to place me right on the average and test my hope at each appointment. I understood that it was their duty to let patients know what they faced. I was even able to admit that my hope at times bordered on denial. But denial and hope are closely linked and, I think, often blur together.

  Dartmouth Medicine Summer 2010

  I returned without having the transplant that was supposed to have saved my life, the procedure that had been my only hope. I was going home to die. But, surrounded by family and friends, I couldn’t imagine dying. Throughout this ordeal, as serious as I knew my cancer was, I had never really confronted the possibility of death before. Sure, I had broken down and cried a couple of times, and in the back of my mind I knew things may go badly. But how could I die in my twenties? I really didn’t feel that badly; recovering from the assault of the chemotherapy, I seemed to be getting a little of my strength back. I knew I still had a runner’s healthy heart going for me. I saw my hometown oncologist and he agreed that I looked pretty good for a dying man. “You don’t look that sick.” I can’t tell you how important hearing that from him was to me, even if it was only meant to temporarily cheer me up. It was exactly what I needed to hear—and it was exactly how I felt. I didn’t feel like I was on death’s door. Indeed, “denial and hope are closely linked and often blur together.”

  My hometown oncologist had spoken with an international expert in my rare cancer and had learned about a few patients with my type of cancer who had promising results with an experimental therapy using a medicine called methotrexate. In those few patients, the medicine had been given in relatively low doses and was well-tolerated. Methotrexate had been used for many years in patients with other conditions, including other types of cancers, but had never been studied in T-cell LGL. With nothing to lose, we decided to give it a try.

  The results were dramatic. Within weeks I no longer needed my oxygen tube and tank, my blood counts were normalizing, and within a couple months there were almost no remaining leukemia cells in my blood. I went into a deep remission. To this day, seventeen years later, LGL leukemic cells can be found in my blood when viewed carefully under the microscope, but they are held in check.

  My experience with my own cancer, and with the oncologist at the famous cancer center where I was told there was nothing more they could do for me, led me to my career as an oncologist. I graduated from Williams, actually competing at the NCAA National Championships as a senior on the track team. Just being on the track, able to breathe hard, able to breathe at all, was a victory. Winning the races I did was an unexpected bonus. I went on to Albany Medical College, and then did a residency and fellowship at Dartmouth-Hitchcock Medical Center in New Hampshire.

  I am back to running for fun and in 5K and 10K races and have done a few marathons. My wife and I have three wonderful, beautiful sons. As an oncologist, I now care for patients with the whole spectrum of cancers; some of my patients are as young as I was when I was diagnosed. Every one of my patients pulls me back to my own experience, guiding me in how I speak to them and how I treat them. In a newspaper interview not too long ago, I said:

  I think the biggest thing I took from my experience and try to apply to others is honoring their story and just trying to listen. When you listen that way and want to get to know who they are, I want to know how they feel when they heard they have cancer. If you enter each encounter from that mindset and remembering what it was like for me at each of those steps, to hear I have cancer, to hear I have no more options and being able to check back to that moment and think about it as I go into a room with a patient in invaluable.

  USA Today, May 15, 2014

  I see each day of my life as a gift, a miracle, and I try to help my patients see their lives that way as well. I know all too well how difficult that can be when in the throes of serious illness and receiving difficult treatments, but it’s become my personal mission in life.

  To read the complete Dartmouth Medicine piece:

  http://dartmed.dartmouth.edu/summer10/html/both_sides_now.php

  To read the complete USA Today interview:

  http://ftw.usatoday.com/2014/05/trevor-bayliss-williams-track-cancer-doctor-tbt

  For more information about the National Bone Marrow Transplant Registry: https://bethematch.org/

  Date of event: 2001–2003

  A Disappearing Tumor Becomes a Source of Hope for Many

  Bradley A. George, MD

  While he was still in the womb, Brandon’s routine pregnancy ultrasound test showed a mass around his spinal cord. When Brandon was born, although the tumor was not visible from the outside, an MRI scan (magnetic resonance imaging is a way to see inside the body without using radiation) confirmed his parents’ worst fears: there was a mass around his lower spine that extended between the vertebrae (spinal column bones) into the spinal canal where the nerve roots run.

  We explained to Brandon’s parents that this was most likely a rare childhood cancer called neuroblastoma, which originates in nerve cells. There are fewer than 1,000 cases of neuroblastoma diagnosed in the United States each year, and almost all of them occur in very young children. This can be a very aggressive, dangerous, and even lethal tumor, but as some kids get older, these tumors sometimes actually shrink or go away entirely. It isn’t possible to say with certainty which neuroblastomas will grow and spread and which will shrink or even disappear. Because of Brandon’s age and the location a
nd appearance of the tumor, we felt Brandon’s neuroblastoma fit the category of tumor that had a good chance of spontaneously disappearing or “matur-ing” into a tumor that would no longer have malignant potential. He was additionally fortunate that the location of the tumor was at the lowest part of his spinal canal, beneath where the spinal cord ended, and therefore he was unlikely to have any problems with movement or bodily functions unless the tumor grew.

  We recommended keeping a close eye on the tumor, holding off on surgery until we could determine whether it would grow or shrink. We explained that surgery in the spinal canal can itself be quite risky and could cause prob-

  lems with nerve function, in addition to the risks associated with any surgery and anesthesia in a young baby—we felt careful observation was the best course for the time being. This is a difficult recommendation for any parent to accept. They know there’s a neuroblastoma tumor in their baby, they’ve read all about neuroblastomas, and they know these tumors can be very dangerous, even life-threatening, often requiring surgery, chemotherapy, and/or radiation. And although our past experience with cases like this, as well as published stud-

  ies from other cancer experts, predicted a favorable outcome for Brandon’s tumor, we couldn’t offer a guarantee that the tumor wouldn’t grow or spread. If surgery was done now and there were no complications, Brandon might well be cured and not require any additional treatments. But, if we waited and watched, he might “cure himself,” sparing him the risks of surgery.

  Brandon’s parents agreed, with understandable nervousness, to careful observation. Because the tumor wasn’t visible on the outside, we followed him with frequent MRI scans. The tumor appeared perhaps to be very gradually shrinking; at least we could reassure Brandon’s parents that the tumor wasn’t growing or spreading. But it wasn’t gone by any means. They knew there was still a potentially dangerous tumor inside their child’s body. Added to that was the fact that although Brandon seemed fine, there was nothing they could “watch” from the outside for reassurance on a day-to-day basis, and we didn’t have biopsy results to assess the exact type of tumor and “stage” of tumor we were dealing with—biopsy of a tumor in that proximity to the spine can itself be very hazardous.