First Signs
I learned that I had cancer in May 1991, when I was 26 and finishing my final year at Harvard Law School. The first sign something was wrong was when I began experiencing relatively mild headaches, occurring predominantly in the morning, upon waking. They became more common and more severe over time, until it reached a point where the headaches were accompanied by vomiting. I had trouble keeping food down and I often woke up in the morning to dry heaves. The university's health service doctors, who had initially attributed the symptoms to exam stress, eventually agreed to refer me to a gastroenterologist at an outside hospital.
When I went to my appointment, the doctor shined a light in my eyes and immediately sent me for an MRI. I was checked into a Boston-area hospital the following day.
Diagnosis
The MRI images revealed a large, crescent-shaped tumor in the frontal lobe of my brain. A biopsy confirmed the diagnosis: I had primary CNS lymphoma -- a rare cancer of the central nervous system (CNS), the cells of which resemble those of lymphatic malignancies.
If I hadn't received treatment in the following few days, the doctors later informed me that I might have slipped into a coma. While I felt like the unluckiest person in the world, I was told how lucky I actually was. As brain tumors go, primary CNS lymphoma is about as good a diagnosis as you can get.
Change in Plans
My plans had been to finish law school, then spend the summer in Cambridge, Massachusets, where I would study for the bar exam and enjoy the warm weather. After that, I planned to move to Washington D.C., to begin working at a law firm. Once in D.C., my hope was to return to work for the federal government in the international security area. I was able eventually to realize this career goal, but since my treatment, I have tried to remember the abrupt and unexpected turns life can take -- and the corresponding perils of structuring life according to a pre-set plan.
My immediate reaction to the news that I had cancer was shock and denial. I felt numb, unable to believe this was really happening. I simply could not think of myself as someone with cancer. I remember telling a classmate that I had "the big C," unable to say the word "cancer." "Cholera?" she had asked, equally incredulous. I understood what was happening to me, I just couldn't internalize it. One moment I was a young person with a long and promising future, the next I was "lucky" to have a reasonable chance of surviving to age thirty.
Support
At first, I coped by focusing on the tasks at hand: taking medications, adjusting to my week-long stay in the hospital, trying to study for the quickly approaching law school exams -- the latter, an illustration of my state of denial. The most important task, of course, was to make right choice about where to be treated and by whom.
I remember going to a bookstore to read about cancer and being unable to open the books for fear of what they might contain. Instead, my family -- including my then girlfriend who is now my wife -- stepped in and did the research for me. There was a natural division of labor, with each family member taking on the task to which he or she was best suited. I believe this type of support is invaluable. It's just too much to expect of a newly diagnosed cancer patient, already grappling with how his life has suddenly changed, simultaneously to survey the medical literature and make informed decisions about life and death matters.
The other great source of support came from my friends, most of whom rallied to my side, providing much-needed emotional support. They allowed me to feel that not everything had changed. I have a strong memory of playing a contentious game of Scrabble with a group of old friends in the visitor's lounge during one of my first nights in the hospital. What a welcome dose of normalcy that provided! However, not all friends reacted as I'd hoped. A few seemed to withdraw. While the pattern was somewhat unpredictable, it seems that those who had known me longest were least likely to shy away.
Treatment Choices
Since primary CNS lymphoma is a rare illness, there were really only two treatment options available. Neither treatment approach had been applied long enough to know how effective it really was. The first option, offered by a major hospital in Boston, was solely chemotherapy, administered over a year and a half. The other approach, offered at Memorial Sloan-Kettering, used both chemotherapy and radiation over a much shorter three-month period. Memorial Sloan-Kettering's approach was considered the more "aggressive" option because the radiation treatment was given at maximum doses, which meant that it could not be used again on me, in the future.
Why Memorial Sloan-Kettering?
My decision to go to the Memorial Sloan-Kettering was the result of a number of factors. In part, I was guided by a sense of where I would feel most comfortable. It was easier to imagine three months of intense treatment in New York City, where I grew up and where my parents still lived, than 18 months of chemotherapy in Boston. A consultation with a senior physician at Harvard helped nudge me further towards New York and Memorial Sloan-Kettering. While careful not to say anything negative about his colleagues in Boston, he had nothing but high praise for the reputations of both Memorial Sloan-Kettering, in general, and Dr. Lisa DeAngelis, Chairman of the Department of Neurology and a neuro-oncologist with extensive experience in the care of patients with brain tumors, in particular.
Finally, I spoke with both Dr. DeAngelis and the Boston doctor. As time was of the essence, I was forced to rely on first impressions. Unfortunately, there was something a bit cavalier, or patronizing, in the Boston doctor's tone, which I didn't like. Dr. DeAngelis seemed more no-nonsense and I instinctively trusted her more. I didn't know it at the time, but looking back, I can honestly say that my choice to go to Memorial Sloan-Kettering for treatment, placing myself under the care of Dr. DeAngelis, was perhaps the best decision I have ever made.
Treatment Begins
In terms of its physical effects, my cancer treatment turned out to be much easier than I had anticipated. Much of the chemotherapy was administered in pill form, or by simple injections. As for the radiation treatments, the therapy hurts about as much as getting an x-ray. There was one chemotherapy drug, methotrexate, which I needed to have introduced directly into my spinal fluid. (An equal amount of the fluid would then be withdrawn and tested for malignant cells.) I believe the procedure is quite similar to the way an epidural is given to a woman in labor, and when performed by Dr. DeAngelis or an experienced nurse, it was more uncomfortable than painful. When performed by an inexperienced intern, it was something else entirely. One lesson I learned during my treatment is to insist that certain procedures be performed by those with experience in doing so.
Side Effects
Beyond the treatments themselves, I had to cope with a range of side effects. When first diagnosed, I took steroids to shrink the tumor, which also increased my appetite. In a week, I gained ten pounds. Later, when receiving chemotherapy, there were times when just the sight of food would make me nauseous. However, these symptoms were generally less intense than I had expected. It was not until midway through the radiation treatment that I began losing my hair. All in all, though chemotherapy and radiation sound to the uninitiated like some form of medieval torture, I did not experience them that way.
Psychological Effects
While the physical effects of my treatment were much less extreme than I had expected, by far the most difficult part of receiving cancer treatment was its coping with the psychological aspects.
During the time I was receiving chemotherapy, I was aware, every day, that I was voluntarily accepting poisons into my system. The most powerful chemo treatment came with a "rescue" drug to be taken several hours later. Without this "rescue," the toxic treatment could kill me. All my life I had held my breath to avoid fumes from car exhaust or cigarettes. Now I was dependent on far more powerful pollutants to save my life.
Radiation was even worse. I found the treatment alienating in the extreme. Once having positioned me on the gurney and strapped me in place, the technicians would left the room, slamming a thick steel door behind them to avoid exposure to the very beams aimed at my head.
Meanwhile, there was no guarantee that the cancer treatment I was receiving was succeeding, although I don't think I allowed myself to think in those terms.
Coping Strategies
Part of how I handled the treatments was to focus on when they would be over. In this sense, choosing the three-month course at Memorial Sloan-Kettering rather than the longer regimen in Boston was clearly the right choice for me. Another technique I used to cope with the psychological stress was frequent exercise. Finally, spending time with friends, not talking about cancer, also provided relief.
Only Time Would Tell
My first feeling of optimism during treatment came from a face-to-face discussion with another of Dr. DeAngelis' patients, a young lawyer whom Dr. DeAngelis thought I might enjoy meeting. He expressed confidence that we were among the lucky ones, that it was only a matter of time before we recovered. "Primary CNS lymphoma is, after all, a cancer that can be cured," he casually observed. This was music to my ears, especially coming from a seemingly intelligent man, facing the same predicament as me. He may have been in complete denial, but I had no desire to check up on his facts.
I received a more substantial indication that I was getting better from the MRI results after my chemotherapy. They showed that the tumor had shrunk considerably. Dr. DeAngelis was cautiously optimistic that the radiation therapy would take care of the rest. She reminded me, however, that there were no guarantees. Even a few surviving malignant cells could form the seeds of a recurrence. Only time would tell.
Success & Appreciation
Fortunately for me, my chemotherapy and radiation therapy treatments have proven successful and I am cancer-free, ten years later. Memorial is one of the few places in the country that has the resources to allow its physicians to focus on a particular type of tumor, and to gain intuition about treating it through experience. And I was lucky enough to have my treatment overseen by one of the premier experts in treating my type of cancer.
When I think of Dr. DeAngelis, my strongest feeling is one of overwhelming gratitude. She saved my life. She is a woman of great skill and judgment, and someone in whom I have complete trust.
This is not to suggest that I never questioned her opinions. In fact, I generally came to appointments with a list of questions stuffed in my pocket. Rather, I'm convinced her combination of medical training, experience, and intuition is as good as any I could find.
I feel extremely fortunate to have Dr. DeAngelis as my doctor. I also admire her greatly. She uses her substantial abilities to help people in their times of greatest need, and has the fortitude to confront death on a regular basis. I have also come to enjoy her as a person. I have known her now for more than a decade, and while I wouldn't quite characterize it as a friendship, a strong bond has formed between us, having traveled this odyssey together. At the end of each check-up, we hug. Not because any book on healing recommends it, but as a natural and spontaneous expression of affection.
As a general matter, the sense that one's caregivers care about you not only as a patient, but also as a person, is something I find extremely important. While not everyone at Memorial treated me that way, such caring seemed to materialize when I most needed it.
I remember two nurses steadying my nerves through my first procedure -- a bone marrow biopsy. Each held a hand and asked me questions about my life, as the needle was inserted. They remained sources of warmth and support throughout my treatment. I received a similar sense of personalized caring from my radiation oncologist. I recall expressing to him my concern that the measurements used to target my treatment might not be exactly right. He assured me that, not only had he double-checked the plan, but that he continued to think of me each evening after leaving the hospital. It was the latter assurance that made me feel secure. There were other such cases. The point is that had I not felt that these caregivers genuinely cared for me as a whole person, cancer treatment would have been a far more frightening and lonely experience.
Cultural Expectations
I'd like to take issue with the expectation, widespread in our culture, that one grows wiser through having cancer. Perhaps this "silver lining" makes cancer, or other life-threatening diseases, less threatening to the uninitiated. However, it places an added burden on the patient at a time when he least needs it. All of my physical and psychic energy was reserved for getting through the treatment and surviving. While it would be nice to say that the experience transformed me, that I'm thankful for every moment of my life, and that I've learned to focus only on what's important, that's simply not true. I am still very much the person I was pre-cancer, trying to live a thoughtful life and not always succeeding. Periodically, the threat of recurrence will surface, and I will ask myself: "What are you doing with your limited time?" But all too quickly that sense of mortality recedes, and I go back to the daily business of living.
Advice
One thing I'd say to those in the initial stages of diagnosis is not to let others tell you how you're supposed to be acting or feeling. You may hear that the best way to fight cancer is through laughter. Alternatively, you may read that your chances are best if you confront your circumstances head-on, allowing yourself to grieve, and then marshaling your efforts to find out everything you can about the disease.
I think that the answer is to identify what worked for you in the past when dealing with problems, and go with that. For example, I knew that exercise had always boosted my sense of physical well being, so I joined a gym. Similarly, having generally had success in school, I approached cancer as an academic project -- studying medical journals and filing away information. I relied greatly on my immediate family and my longtime girlfriend for support and comfort.
At one point a well-meaning friend, whom I saw frequently the summer of my treatment, expressed concern that I wasn't talking about my illness enough. At first I thought she was right, that somehow I was failing. But actually, discussing the illness simply wasn't my way of coping at the time. The point is that only you can know what will get you through this crisis, and your energies should be directed at identifying and drawing upon these reserves, not justifying them.
Finally, I would advise any new patient to play an active role in your treatment. Learn about your illness, ask questions, participate in decisions, and make sure the treatment provided is what was intended. As a general matter, I am convinced that actively participating in treatment decisions leads to better results. This is due, I think, both to better care received as a result of patient input, and to the patient regaining some sense of control over his life.
