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A Life-Changing Sandwich
On a large enough time line, the survival rate for everyone drops to zero.
On July 19, 2009, I made myself a bacon, lettuce, and tomato sandwich. As someone who has spent much of his life trying to prevent heart disease, I hate to admit it, but there is something irresistible about the crunch of crisp, cool lettuce mixed with the sweetness of tomato and the saltiness of bacon. I sat down at our kitchen table, a 1950s classic from my grandparents, turned on the news, and began to eat. I had just finished a conference call and was still thinking about that conversation, enjoying the salty-sweet flavors, and watching television all at the same time. After two bites I felt a sudden fullness, as if the sandwich were lodged in my chest. It felt as if I had eaten a golf ball. Pressure and mild pain started to build up in my lower chest. Without thinking, I stood to get some water, and as I swallowed, the water rose up in my esophagus, almost returning to my mouth. Something was wrong. After a very uncomfortable moment, I felt the food and water flush down my throat. As a physician, I knew that the esophagus is very soft and flexible and able to handle a lot, like a balloon that has previously been blown up. Food getting stuck there was in no way normal.
When Kathy came home that night, I told her what had happened.
"It must be a stricture," she stated in her doctor voice. "Forty years of heartburn will do that." She was brushing it off as if it were a nonevent to avoid the more likely and concerning reality.
I have had a hiatal hernia from birth, a condition in which the stomach can slide up into my chest, bathing my esophagus with stomach acid on a regular basis. This can cause significant damage over many years. We wanted to convince ourselves that this was the problem. So I continued in my doctor voice: "I'm sure that's all it is. I should get scoped. Who should I call?"
Kathy suggested Tim Sowerby, a gastroenterologist in our community.
Tim agreed to scope me the next day. Being a doctor has its perks.
Kathy and I blissfully entered our world of denial and objective medical talk about what was happening, but below the surface we knew what we were afraid to say out loud. We denied cancer an entrance into our conversation and our lives. I was too young. The problem had just started. There's no cancer in my family. This was just a stricture.
"It's going to be fine," Kathy said. "Tim will dilate it and you'll be as good as new. It's going to be fine."
On the day of the endoscopy, I was a little anxious about the procedure, but I still believed that Tim would find a stricture and dilate it, and that would be all. This was the story that Kathy and I created, and I was sticking to it. I walked the two miles to Tim's office along a beautiful little creek that passes through the small valley towns of Marin County, smiling and nodding to passersby and listening to my iPod. Rock 'n' roll music has always been my constant companion, and this day was no different from any other.
At the gastroenterology suite I joked with the nursing staff as they readied me for the procedure. A quick needle pinch, an IV line, a little fentanyl and versed, and a few minutes later I was out.
On waking, my daughter Cheryl was there at the bedside, reassuring me with her dark, beautiful eyes and loving smile. I had no idea that the procedure was finished. I was still drugged up. I slowly arose out of my haze and waited for Tim to give me a report of his findings. He entered and showed us the photos of my esophagus. In my mind, I saw erosion, but my medical brain was turned off by the medications. Tim said that there was erosion and we should talk in a few days, after he received the biopsy. In retrospect, he was being kind.
Three days passed, and on July 24, 2009, at 5 P.M. I called Tim to see if he had received the biopsy. Deep inside, I knew that I might not have a stricture. I stepped outside and braced myself for the conversation. In his gentle way Tim said, "I do have the biopsy report. Can you come to the office tomorrow so we can discuss it?"
"Tim, I'm a physician; I've used that line before and know what it means. What is it?"
He hesitated, and in that hesitation we both knew what was unspoken. Wanting to talk in the office happens only with bad news. I told him that it was okay to let me know by phone, hoping to make it easier for him, hoping to make it easier for both of us.
"It's an adenocarcinoma of the distal esophagus."
In lay terms, I had cancer of the lower esophagus. At that moment I realized that my life would never be the same. I had a fair idea that this was a really bad cancer. I had never seen a patient live with this diagnosis. I had a 75 percent chance of dying within the next eighteen months and a 90 percent chance of dying within the next five years. It would not be an easy or painless death.
Part of my mind (let's call it my medical mind) kicked into high gear. What do I need to do to complete my workup and treatment plan? What are the statistics today? Which colleagues should I get involved in my treatment? What are the options, if any?
At the same time, part of my mind (let's call it my relational mind) was concerned with breaking the news to Kathy (who would also recognize the gravity of the diagnosis) and our children, Cheryl and Will. Although it was very interesting to witness my medical mind and my relational mind working separately and simultaneously, in that moment I was not agitated or upset. The feeling of calm was unexpected and almost shocking. I sat there peacefully gazing at the trees and wondering why I wasn't upset.
I was fifty-two years old and had just been given a death sentence. It felt strangely acceptable.
Elisabeth Kübler-Ross, M.D., in her now classic 1969 book On Death and Dying, described the five stages of emotions that a dying person will encounter. They are denial, anger, bargaining, depression, and acceptance. Every medical, nursing, and psychology student learns these phases. What is not often taught is that they come intermittently, in no particular order, and with a slew of other emotions, many of which occur simultaneously and paradoxically.
A very funny thought-emotion came to me: freedom. I was a chubby teen and have spent my life rigorously watching my weight and exercising regularly. I was never athletic as a child and can remember my shirt buttons straining to stay closed around my waist when I sat. Food was a pleasure that I did not deny myself, and my mother was a great cook. My bad eating habits had led me to develop a career of teaching and researching lifestyle modification to prevent and treat heart disease. We teach what we most need to learn.
At the moment of my diagnosis, all bets were off: no more dieting. I knew that I would be losing weight regardless, so Ben and Jerry, it was going to be nice to renew our relationship! Frankly, I also thought of a direct application of tequila to my cancer, but I knew that I had something critical to deal with first.
I sat in our yard, a peaceful wooded place in the hills filled with the sound of birds, and just breathed in the scent of eucalyptus and pine. I knew that my life would never be the same-my work life, my family life, and the way I felt physically every day would all be different. I also knew that I couldn't imagine what this would feel like: chemotherapy, radiation, pain, daily nausea, and eventual fading away into death. I had watched many patients experience this but never asked them what it felt like. I was about to find out. I was embarking on a very challenging journey, to say the least. I sat there enjoying the last thirty minutes of my existence before cancer would become the life focus for both my family and me.
The singer and songwriter Warren Zevon died of cancer in 2003. That year, he was a guest on the Late Show with David Letterman. Letterman asked him what he had learned in the process of dying, to which Zevon replied, "I learned to enjoy every sandwich." At the time, that struck me as simple and profound. I had used that line in many of my talks about life balance, but it seemed especially relevant to me now, as it was a sandwich after all that had led me to discover my cancer. I laughed to myself.
Then I began to experience helplessness, not for me but for what was about to happen to those I loved. Kathy, my wife and my best friend, would be home soon. Her life was about to change, too, and I could not stop it. She would become a caregiver, watching her husband wither away with illness and eventually die. I wished that I could somehow freeze time so that this conversation would not happen. Our life as we had known it, as we had planned it, was over. After almost thirty years of love, I was about to break her heart in a way that I could never have imagined.
I Saw Her Standing There (Before I Saw Her Standing There)
The few weeks before the start of medical school I dreamed repeatedly of standing at an altar next to a woman with long, dark hair. I knew that this was my wedding and I knew that the woman was Asian, but at the time I didn't know any Asian women. I had no context for the image of this woman or for the dream that was so real to me that I could reach out and touch it. That was about to change.
On the first day of medical school orientation, I was sitting on a table in the school lobby, a cavernous space filled with the echoes of loudly chatting medical students busily saying hello to one another for the first time. We were all excited and anxious to be there. For most of us this was the beginning of a lifelong dream as well as the end of one competitive journey and the beginning of another. We would be one another's colleagues and competition for the next four years. Some of us would make it; some of us would not. I was talking to one of my new classmates when I noticed a five-foot-tall Asian woman walk in the door. She was wearing jeans, a blue blazer, and Top-Siders. She had long black hair and a bounce in her step. I knew, at that very moment, this was the woman I had dreamed about. It felt strangely obvious, even natural. I was a bit shy about introducing myself to this woman from my dreams, and though I am sure that I did, I have no memory of the first words we spoke to each other. Those words and much of that first meeting were overwhelmed by the excitement of everything that was happening that day. We were not kids anymore-not even college students. We were going to be real doctors.
In the first two years of medical school, we spent six to eight hours a day in one classroom: a large hall with chairs fixed in an amphitheater, our underground windowless center of learning. On day one we settled into our chosen spots, and for two years we barely moved. After all, humans like familiarity. I sat in the second row, on the right, with Mark, Michael, John, and Connie. We would spend most of the next two years together in those seats, taking notes, laughing, and nudging one another if we fell asleep.
Kathy preferred to sit in the back. She was rather shy and did not want to be noticed or called on. Occasionally I would sneak back there just to be closer to her. I laughed as she made funny movements with her lips as she took notes. I found out that she was from Rockville, Maryland, and had gone to Johns Hopkins as an undergraduate and that, much to my disappointment, she had a boyfriend named Richard who lived in Baltimore.
I persisted nonetheless (screw you, Richard). We discussed movies and music and various other interests until eventually I asked her to go out with me. This was to be a nondate, two friends going to a movie. I was working this as hard as I could, trying not to seem anxious or overly excited and definitely trying not to appear to want to threaten her existing relationship, although that was my clear intent.
The day before our casual (nondate) night out at the movies, she declined, making a lame excuse about someone visiting from out of town. I knew that she had realized that it was to be a date. She had clearly not seen what I had seen in my dream!
I continued to obsessively persist, with our first date being a quick lunch at a Popeyes chicken restaurant. Not the fanciest of first dates, but I finally got to be with her outside the confines of medical school. Eventually we began studying together, eating together, and occasionally running together.
At the beginning of our second semester, I secretly arranged for Kathy and me to share microscopes in pathology lab. I had worked at the school before becoming a student, so I knew the staff members, who were happy to help me in my romantic endeavors. I knew that lab partners often kept one microscope at school and one at home so they wouldn't have to carry a scope back and forth. If we were lab partners, we were going to be spending a lot of time together in and out of school. I was taking my obsession to new levels.
By the end of the second semester, we were studying together and running together daily and eating many of our evening meals together.
On June 4, 1981, after a run along the C & O Canal in Georgetown, we stopped at the small wooden bridge spanning the canal and rested. It was a very warm spring night, and we were both sweating. Leaning on the bridge railing, inches from each other, we talked. My heart was pounding in my chest not from the run but from what I was about to do. I turned and kissed her. She didn't pull away-she even kissed me back. I will never forget that moment for as long as I live. I had pursued this woman for over a year, and now here I was kissing her on a bridge in Georgetown. Hello, Lee; goodbye, Richard!