My Experience With Lymphoma
Navigating the ups and downs of a life-changing diagnosis.
Until the end of 2014 I thought that I was a healthy 66-year-old: normal blood pressure, not overweight, no prescription medications. I worked out at the gym regularly, and had missed hardly a day of work in over 35 years of teaching at Harvard. I loved my work and was obsessed, probably too obsessed, with it.
At the beginning of December I visited my primary-care physician to talk about a hernia that I had recently developed. Before meeting my doctor, a nurse weighed me at 147 pounds. I was virtually certain my weight the previous five years had fluctuated only one pound from 155. When my doctor came in, he confirmed I was right. Given my inclination to obsess about health risks and panic at the slightest hint of a problem, I felt a pang of fear: Wasn’t unexplained weight loss a symptom of cancer? But the lab tests were normal. I went home and resolved to forget about it.
Fast forward a month. My wife was worried that I seemed tired and unfocused. While meeting with a Los Angeles city official over Christmas, I had fallen asleep. The day after returning to Boston, I was sitting near the window reading the newspaper. The vision in my right eye seemed slightly blurry, so I decided on a small experiment. Covering my left eye, I tried to read the newsprint. To my dismay it was illegible.
By coincidence, I had my annual physical exam the next morning. My doctor looked into the eye and said, “You need to see your eye doctor soon.” Within the next twenty-four hours, I saw three doctors—the eye doctor, a retina specialist, and an eye-inflammation specialist. It was amazing how quickly the second two doctors, whom I had never dealt with, saw me. The inflammation specialist told me the inflammation could have three causes: infection, auto-immune disease, or (least-likely) cancer in the eye. He drew some blood and scheduled a biopsy.
The test results would take days or even weeks to come, and the cancer tests were slowest. My eye doctor suggested a neuro-oncology consult, where they tested my cognitive functions (walking in a straight line, naming the last five presidents backwards), pronounced me normal, and scheduled an MRI that Friday to test further for cancer in the brain. With the normal cognition test and a negative preliminary biopsy for cancer that had just come in, I wasn’t particularly worried.
I was eating lunch, only hours after the MRI, when my cellphone rang. The person said my MRI showed “a problem.” I needed to get to the hospital pronto. The word “cancer” was not used, and I, somewhat catatonically, although without panic, headed for the subway and proceeded to the hospital.
When I had checked in and saw a doctor, I quickly asked, “Is there any benign explanation for these results?” “No,” she said. The doctor didn’t use the word, but it was clear I had cancer.
Not surprisingly, much of this year for me since that short exchange has been dominated by cancer, and these are the topics of the rest of this essay. Some of what I learned taught good things about myself. The most surprising is that I did not fall apart in connection with my diagnosis or treatment. Why didn’t I go into a tailspin, as I normally am wont to do at any hint of a medical problem? But I also confronted less-flattering things about myself, including not having paid enough attention to friends or neighbors, and not doing enough volunteering. Both were related to obsession with work. I needed to decide how, if at all, I would change my life in what would I hoped would be my post-cancer world.
The day after I checked into the hospital I got a PET scan to see whether the cancer had spread beyond my brain and right eye. The doctor told me the scan showed no spread. Then came more of what sounded like good news: My tumor was small and had been caught early. I smiled, and involuntarily patted the doctor on the back. Without waiting, she proceeded to tell me that I had lymphoma, and that while lymphoma is common, in the brain (central nervous system or CNS lymphoma) it was extremely rare.
Chemotherapy, she continued, was to begin the very next day. Chemo for lymphoma, she explained, was divided into two stages, “induction” and “consolidation.” Induction, which would take place in seven cycles every two weeks, was to get the tumor to recede. Consolidation was to prevent it from coming back.
I couldn’t quite follow what the doctor was saying, especially about the idea of two stages of treatment. The one question I managed was, “Why are there two stages of treatment for this cancer? Does that mean it has an unusual risk of recurring?” Good question, I later realized. She didn’t give a specific answer. “Yes, it can come back. But even if it comes back, it is often treatable. It is a lazy cancer that doesn’t develop immunity to chemo. I have a patient in her eighties who has been treated for CNS lymphoma four times.” There were two different kinds of consolidation treatments, she continued. One was a stronger round of chemo. The other was a new and promising, but risky, procedure called “stem-cell transplantation.” (I had no idea what this was.) I could decide later which I wanted.
The strangest feature, not only of those first days but for much of the year that followed, was how preternaturally calm I felt. I am amazed I did not fall apart in connection with my initial diagnosis or the months of treatment that followed.
During the first days, part of it was the sheer speed of what was happening. The bad news came without warning, so I had no time to brood in advance. No sooner was I diagnosed than I was told treatment would more or less immediately begin. Then, a little bizarrely, the “good news” showing no spread of the cancer almost cancelled out the bad news of the cancer itself. Based on my existing knowledge of cancer, this was promising in terms of my prospects; I should be able to defeat this.
This calm continued as I settled into routines that would replace my obsession with work and come to completely to dominate my life for the next five months: a rigorous schedule of treatments (chemo and otherwise) in the hospital and at home. These consumed my days and made me feel purposeful: I was fighting to get better. I adopted interim goals, including gaining back weight lost during my chemo and, more importantly, making the hard decision about whether I should get a stem-cell transplant afterwards.
My body had to be prepped in various ways to accept the chemo without adverse reactions. But I discovered the hospital had no procedures for starting these procedures immediately. At the beginning, my treatments therefore started very late at night, creating a risk I’d have to stay in the hospital an unwanted extra day to give my system the chance it needed to recover. I improvised in a number of ways to get my treatment started earlier, but I wish I hadn’t had to improvise.
My life at home also involved many routines around my illness. In the hospital, I would lose my appetite and several pounds. It took about two days at home to get my appetite back, giving me ten days between treatments for a forced march to retrieve lost weight. This struggle took on great importance in my daily life. I started with Carnation instant breakfasts with milk and ice cream (spiked with almond butter for calories and protein), tablespoons of whipped cream, and a milkshake-tasting drink that, my sister reminded me, my mother had given me as a skinny child. I ate two tablespoons of whipped cream with breakfast. I scarfed fatty foods, such as a tenderloin steak, which I otherwise never ate except occasionally at restaurants, and even downed previously verboten health horrors such as bacon, as well as fettuccine with cream and parmesan sauce. In addition to three meals, I ate two or three snacks a day (often yogurt or peanut butter), in-between breakfast and lunch, lunch and dinner, and after dinner. Finally, I had a smoothie every night before bed.
Each morning I religiously weighed myself, and emailed my children and siblings with the results. (I discovered weight doesn’t change on a linear path, but can be stable for a few days, suddenly spike upwards for no apparent reason, and even sometimes, also not necessarily for an apparent reason, spike down.)
The doctors worried about dehydration, so despite never liking water much, I had to force down liquids, starting with a bottle of water waking up every morning. I couldn’t go outside during Boston’s brutal winter, but I was told to walk, so I paraded up and back down the stairs several times, sometimes ten times daily. Once it got warmer, I would walk a mile and a half daily. Like a toddler, I took two naps a day.
My friends kept me busy by visiting often. There is no greater cliché about how people react to serious illness than to note how it makes one appreciate the importance of friends. But clichés become clichés for a reason. I would not say that before getting sick I ignored my friends, but, obsessed with work, I didn’t give them the attention they should have received. Treating me more generously than I deserved, people showered me with visits in the hospital and at home. Some brought me the few foods I found appetizing, such as pizza. One colleague regularly plied me with Sichuan fish, a taste that survived chemo. Neighbors from our block helped with food and support, far more than my previous attention to the neighborhood warranted.
My wife, who worked week days in another city when my treatment started, and my daughters, who also lived elsewhere, put in place an amazing logistics system for seeing friends. The only times I became tearful during these months came when I cried tears of joy in response to the kindness of friends and colleagues; I welled up uncontrollably when a class of executive-education students stood up and applauded when I came to Harvard for the first time in months to speak informally over lunch.
The other thing that kept me busy at home was learning more about my illness, by reading and drilling my doctors with questions. To be frank, my doctors didn’t volunteer much information; I had to learn myself about my disease and about treatment options. But they were excellent at answering questions.
About a month into treatment, I serendipitously learned two important pieces of information about my cancer. One afternoon a visiting college friend asked how I was being treated, and I casually answered I was receiving chemo. That’s impossible, he replied: Chemo could not get into the brain because of the “blood-brain barrier.” He explained that the blood-brain barrier—which I had never heard of—had developed to protect the brain from foreign substances, and that this created a problem for a lymphoma, which unlike other cancers, couldn’t be treated by chemo. Shortly thereafter, I received an email from the daughter of a family friend, a medical researcher. She quoted a just-published article on CNS lymphoma stating that 25 years ago, the disease was a death sentence, but through a series of medical advances, that was no longer true.
After asking my doctors a barrage of questions, I learned that CNS lymphoma had previously been a death sentence because of the blood-brain barrier. That death sentence was partly lifted as doctors discovered that the chemo agent methotrexate, administered in high doses, could penetrate the brain. However, at these doses, it would likely cause severe kidney damage unless this was counteracted. This was the reason, I now learned, for why I had to be prepped before treatment could start and was constantly on intravenous fluids during my whole stay (which meant I needed to go to the bathroom every ten minutes).
But while this chemo could put the cancer in remission, it was unlikely to cure it. I soon learned that CNS lymphoma returns about 70 percent of the time, often within two years. The reason my initial “good news” that the tumor had been caught early and hadn’t spread didn’t mean so much was that even small, localized tumors would likely recur.
This news launched a month of intensive effort to decide whether to risk receiving a stem-cell transplant. The basic idea of a transplant was simple, though the procedure has an air of medical magic. I would be given an extremely high dose of chemo over nine straight days, the goal of which was to kill any remaining cancer cells. However, this regimen was so severe it would also kill all of my white blood cells, which would leave me to die of infection—unless I received the stem-cell transplant. This was the magic part: Before I received the chemo, stem cells living in my bone marrow, which specialize in producing white blood cells (not like the undifferentiated fetal stem cells about which there is political controversy) would be harvested and frozen. When the chemo was over, these stem cells would then be inserted back into my body, giving me new white blood cells. Afterwards, I’d be at severe risk for infection for several months, as the white blood cells gradually began functioning.
The alternative to a transplant was a consolidation chemo that was less risky, but possibly less effective in preventing recurrence. As I started my decision-making process, I saw this as an extremely difficult decision, arguably the most difficult of my life. The treatment itself created a risk of death from infection (or from reactions to the strong chemo I would receive). How much would it reduce the risk my cancer would relapse? I was somewhat concerned my doctors were transplant evangelists, whose enthusiasm for technology maybe outran the evidence, a phenomenon familiar from my own academic area of public policy where advocates often became impervious to evidence. I was determined not only to read every scientific paper on transplants for CNS lymphoma but also to track down outside researchers who specialized in it. After doing exhaustive research, I would set up a meeting with my doctor to ask my remaining questions; I asked a friend if he could accompany me at that meeting as a devil’s advocate, to shield me against evangelism.
My doctors provided three recently-published scientific papers on consolidation treatments for CNS lymphoma, two on transplants and one on the less-aggressive treatment. (Science was moving fast!) I also emailed three university-based experts on CNS lymphoma, and all agreed to talk.
The studies were imperfect. Ideally, researchers like “randomized controlled trials,” where people are randomly assigned to different treatments, or no treatment at all. Without randomization, healthier people might get transplants, and better results might be due to their being healthier rather than the treatment. But no randomized controlled trials for CNS lymphoma consolidation existed. I could only compare how many people getting transplants, however they were chosen, remained cancer-free compared with those getting less-aggressive consolidation or getting no consolidation at all. I knew at this point the probability of quick recurrence with no consolidation was very high. But I didn’t know the comparison between a transplant and less-aggressive consolidation.
With my life at stake, I couldn’t afford to be a purist; I had to decide based on the imperfect evidence available.
The studies seemed to tell a pretty clear story. In the two studies of CNS lymphoma patients receiving transplants, none had a recurrence after two years. Several doctors told me that if you survived two years without relapse, there was a 75-to-90 percent chance the cancer was gone. The one study of consolidation without transplant also showed pretty good results, but less-dramatic. The risk of death from the treatment was 1 percent at my hospital. A small risk of death against a fairly good probability of cure.
After going through all the evidence I could find, what initially seemed like a wrenchingly difficult decision became not so hard. It is not pleasant to voluntarily expose yourself to a risk of death, but it was the reasonable thing to do. I was calm, especially because I now thought there was a decent chance I would be cured. The meeting with my doctor to ask final questions ended up being anti-climactic; I had pretty much already decided.
In late June, after a day of stem-cell harvesting, I entered the hospital for nine days of chemo and another nine of inpatient recovery. For several days, I was delirious with high fever (though no infections); I have no memory of those days, though apparently at one point I started speaking Chinese—I had been listening to Chinese language tapes during my chemo. I was not placed in a bubble, and could have some visitors, but everything I did was characterized by a high level of precaution and very detailed procedures the hospital had developed over the years (the virtue of bureaucracy, I told myself). Computers, books, pens, and other materials coming from the outside world had to be wiped down with disinfectant before entering my room. Visitors needed to wear masks, and I needed to wear one whenever I left the room for a walk. I had no solid food for three weeks, and left the hospital having lost 23 pounds. When I left, I could walk about 10 feet with a cane.
The procedures and restrictions to reduce infection risk when I arrived home were harsh. My bathroom needed to be disinfected daily. I washed my hands several times a day, rubbing them together long enough to sing the alphabet. All food needed to be cooked so thoroughly the toughness was overwhelming; even dried spices (because of fungus risk) needed to be cooked for ten minutes. Most of the burden of observing these procedures fell on my wife.
The good news is that my recovery from the transplant has gone better than expected. Most importantly, I did not catch a single infection. Six weeks out, I was walking a mile, now two miles a day. (I first needed a fellow-walker to hold a beach chair so I could rest along the way; my daughter organized a posse of neighbors.) In mid-October, three months after leaving the hospital, I was released from almost all food restrictions and authorized to go into public places, including my office, restaurants, and the subway. I plan to return to teaching in January. As of this writing, my taste buds have recovered from the chemo—for months, lemonade had tasted like tomato juice. But I still have a bad taste in my mouth, and I am still more tired than normal. But I have gained back 70 percent of weight lost in the hospital.
I do not know yet whether I am cured. I have had two MRIs. I will have them every two months for the first year. Meanwhile, there were life changes I promised myself based on insights from being sick, which, with recovery from the transplant, I needed to start thinking about. I had done some volunteering before my illness, but not enough. When I got sick, volunteers from my synagogue often drove me to the hospital; I told myself that if I got better, I would volunteer for the synagogue’s cancer driving activity; three weeks ago, I called to sign up. I also will be speaking with a church in Cambridge about helping an immigrant child who doesn’t speak English at home. And I am going to try to spend more time with friends.
The healthcare system functioned well for me. I remain amazed at how quickly doctors saw me. Sure, I am a Harvard professor, but my health plan is a widely available one by no means limited to professors. My chemo started immediately. Some hospital routines didn’t function well—the procedures that weren’t there for getting my treatments started, procedures to get me a home health-care worker when I left the hospital after the transplant. But all in all, as a student of organizations, I appreciated how much the standard operating procedures had made me safer. And my doctors, if not always spontaneously communicative (were they trying to spare me worry?) were competent and dedicated.
Something strange and unexpected started happening to me in November, around when my doctors told me I’d recovered really well from the transplant and could start sometimes going into the office. For the first time since being diagnosed, I was assaulted with anxiety and unease—about dying, about the changes coming to my life as I slowed down a bit at work and prepared to spend time in a new city. Two smart friends to whom I mentioned this provided an insight about what was happening to me. One said, “That’s why they call it post-traumatic stress disorder. You don’t feel the stress on the battlefield. You feel it after.” Another noted that the University of Pennsylvania psychologist Martin Seligman had researched people’s reactions to natural disasters such as hurricanes, and found they reacted well during the disaster itself, with psychological problems coming afterwards.
When I got sick, I decided I didn’t want to retire, but also didn’t want to work at the same obsessive pace as before. In June we bought an apartment in Miami, and I am planning to spend two winter months per year there. This week, the first anniversary of my diagnosis, I went back to teaching—actually teaching some of the exact same classes I couldn’t teach a year ago because of my illness. I have come into to the classroom worried about poorer memory from “chemo brain,” which would be a big problem for me leading class discussions since I must remember what people have said. The in-house teaching consultant who observed my first two classes said I passed with flying colors. But my unease hasn’t gone away. So, while my battle against my disease is over, I hope, now I must return to the challenge of living the rest of my life. I guess those challenges, given my diagnosis, are better than the alternatives.