Chasing My Cure

by David Fajgenbaum

  A simple trip to the grocery store immediately comes to mind. The cancer had nearly completely paralyzed the right side of her body, so walking was quite difficult for her. But she could lean on me until we got inside the store, and then she decided to use their motorized cart. But she could squeeze only one handle, so the cart went in circles. I thought she was going to cry—I would have—but when the cart began to circle back toward me, I saw that she had a big smile on her face. And she just kept doing circles while we laughed together. I’ll never walk past one of those carts without thinking of her and that laughter. She created that silver lining and she gave it to me that day. She showed me that I didn’t need to hope for a miracle to happen or for someone else to make things better for me or someone I loved—I could grab it by the handle and make it happen myself.

  I STRUGGLED WITH returning to school in the fall for my sophomore year, so I traveled home every weekend to spend time with my mom. A few months later—in October 2004—we had our final visit and conversation. She worried about whether I’d be okay. I told her that I would and that I’d create a group in her memory to help other grieving college students—something I had never thought of before that moment. Then, I added that I would name it AMF—after her initials, Anne Marie Fajgenbaum—and it would be her work, her life living on through me.

  Her words at that point were limited. She smiled and responded, “Unconditional love.” She passed away two weeks later. I was nineteen.

  I was impaled by my mother’s death. There’s no other word for it. How could this happen? She was the hardest-working, kindest, and most giving person I had ever met. She ate exquisitely healthfully, exercised daily, and didn’t smoke or drink. She made her life all about helping others. Why would God do this to my mom? If He was truly in control, why would He choose to take her? Her diagnosis and death introduced the first cracks in my foundation and my belief in order and hope.

  A few weeks later, I found a scrap of paper in my mother’s purse. It was a clipping from a newspaper, yellowed, framed in Scotch tape, and bearing the unmistakable signs of having been a frequently consulted source of inspiration. It was only a fragment, but I was able to make out that it was from a story about Pope John Paul II and a trip he made to Cuba in 1998. It included a quotation from his speech:

  Dear young people, whether you are believers or not, accept the call to be virtuous. This means being strong within, having a big heart, being rich in the highest sentiments, bold in the truth, courageous in freedom, constant in responsibility, generous in love, invincible in hope.

  Inspired by these words, I knew what I needed to do. I returned to Georgetown on a mission. I formally founded AMF, which I decided would now also stand for Ailing Mothers & Fathers. It included a peer grief support group and community service projects in honor of deceased parents. I quickly learned that many other students—even a close friend of mine, Kate—were also grieving, but we all felt alone because no one talked about it. We soon opened it up to any students coping with the illness or death of a loved one and changed the meaning of AMF again, this time to Actively Moving Forward, to reflect our inclusivity. Each struggling student who shared his or her story of loneliness and lack of support on campus motivated me to work harder. Every time that I was sad about my mom’s death, I channeled more energy into AMF. My high school best friend, Ben, impelled by his own grief following the death of my mom—who had been like a mother to him—started another chapter of AMF at the University of North Carolina. By the time the tenth student contacted me about starting a chapter of AMF on another campus, Ben and I decided to turn AMF into a national nonprofit organization. During my last two years at Georgetown, and for many years thereafter, I would work twenty to forty hours a week as the unpaid executive director for AMF and start chapters of the group on college campuses across the country.

  There was nothing—nothing—inherently “positive” about my mother dying the way she did. She willed positivity into that last year. I borrowed some of that willpower she left behind to will AMF into existence. It’s helped support thousands of grieving kids all over the country. It’s a silver lining, no doubt. It didn’t exist before I put it there.

  My work ethic seemed to finally find full expression when mixed with a sense of purpose beyond the end zone. Football slipped down my list of priorities as I focused on AMF’s nationwide spread. Medicine shot up. I wanted to become an oncologist to take on cancer. I wanted revenge.

  During my senior year I received a scholarship to complete a master’s at the University of Oxford, focused on cancer prevention. After that, or so my plan went, I would be fully prepared to start med school and become a warrior against cancer in earnest. I was excited to begin this next stage, and I prepared to go over to England like I was getting ready to go to boot camp. And then, as plans do, this one got upended a bit. I met Caitlin at a bar in Raleigh while I was home visiting my family over winter break.

  It turned out that we had both gone to Ravenscroft High School in Raleigh, though because she was two and a half years younger than I and had transferred there just six months before I graduated, we never actually met. After high school she had gone on to study at Meredith College in Raleigh, where, incidentally, my mom had enrolled in her late forties and completed half of her requirements for a college degree before cancer derailed her plans.

  We may not have met while in high school, but Caitlin remembers the first time our paths crossed. It was at a high school basketball game. She noticed that a fan for the other team was wearing a football jersey with FAGENBAUM printed on the back. She didn’t think much of it; she didn’t know whom the shirt was even referring to. But then she saw a Ravenscroft student run to the other side of the court and up into the visitor stands. He ripped the jersey right down the middle before security ushered him out of the arena to jeers and boos from the other team’s fans.

  That jersey ripper was me! The taunt on that jersey wasn’t about basketball; it was a holdover of resentment from our football rivalry.

  After the game, when Caitlin told her mom what happened, her mom told her that she couldn’t go to any more basketball games and warned her to stay away from that Fajgenbaum boy.

  Here we were four years later.

  When I spotted her at the bar, I immediately remembered her. We had a number of friends in common but had never actually met. She had sent me a Facebook friend request a few months before. And I had sent her a message that since we were now Facebook friends, which meant we must be very close friends (that’s how it was in the 2000s), we should actually meet when I was in Raleigh next. When I got the courage to walk over to her at the bar, we hugged like we had known each other for years and were just catching up.

  Which is, oddly, how it felt. I complained about my pre-med classes, and she told me all about her classes in fashion merchandising at Meredith. Though ordinarily I would have avoided invoking my mom and the follow-up questions that might take our first conversation in a sad or morbid direction, I told Caitlin about my mom’s experience at Meredith and about her too-young and recent death. Nothing seemed off-limits.

  My heart was thumping wildly. I got her, she got me. We could both feel it, but I made a real effort not to show my cards—I spent the next thirty minutes talking to other people so as not to let on my interest. But every time I turned to look at Caitlin while I was making my rounds, she was looking back at me. She was gorgeous, and her smile was beautiful. Trying to make Caitlin smile soon became a new target for my hyperfocus.

  We began dating long distance during my final semester at Georgetown. Between me traveling down to Raleigh or her up to D.C., we managed to see each other almost every weekend. She also loved what I was doing through AMF and even started a chapter at Meredith College. She was our—and my—biggest cheerleader.

  For the first time ever, I found someone who could get me to take a break from work. And I liked it. Caitlin also was one
of the few people in my family or friend network who felt comfortable calling me out about a bad idea or something that I needed to improve upon. Who else would have told me that I had to cut the overly dramatic nods with pursed lips I made with each question during my first televised interview about AMF? I promised to work on my listening face.

  Before I left for Oxford, we committed to making our relationship work despite the distance. My master’s was supposed to be a two-year program, but I didn’t want to be away from Caitlin for that long and I was also eager to get on with medical school and residency thereafter. One week into my program, I asked to meet with the program director and broached the subject of accelerating my studies. It wasn’t an easy conversation. He warned that I’d need to perform two years’ worth of full-time, graduate-level work to achieve the master’s. I set out to do it in eight months.

  I worked around the clock to meet my self-imposed deadline and also to lead AMF, which really began to gain traction and even national attention, from abroad. The Today show and Reader’s Digest would run stories about our work that year, and the story of AMF’s creation would be printed on the backs of 20 million bags of Cool Ranch Doritos in 2007 and 2008. College kids love Doritos, so those bags contributed to a surge of new chapters of AMF. But I was surprised to learn that awareness does not always translate into action or, in this case, donations. Millions of people saw those stories, hundreds of people emailed me to congratulate me on my work, but just a few donated to support it. Perhaps the publicity of iterative successes gives people the perception that the problem is solved or others are already on the case; it’s difficult to express how hard it was to get that far, and how much more there still was to do. I also think that many assumed AMF must be receiving donations from other people and bursting with funds because of the coverage we were getting, so they chose not to donate themselves.

  I did carve out some time to play quarterback for the Oxford Cavaliers (American) football team. It was a different level of competition than I was used to, but it was a familiar hobby and quenched my ever-present desire to be a part of a team. And, not inconsequentially, it was fun. I knew I needed that outlet in my life.

  My time in Oxford also introduced me to the world of biomedical research. And what I saw alarmed me. Back when I had watched the doctors work together at Duke to treat my mother, all I saw was impressive coordination and cooperation among parts of a well-oiled machine. I just assumed that same kind of organization threaded up into research and out into all parts of the medical world, that everyone worked together in pursuit of a common goal: saving lives.

  Instead, I started to realize there was a stunning lack of collaboration in many places, especially among cancer and cardiovascular disease prevention researchers. Though diet, physical inactivity, and smoking are the top three preventable risk factors for both diseases, researchers studied them in silos. They hardly worked across the aisle; they barely seemed to work with others even in their own specialties. For example, studies of the impact of risk factor modification on cancer prevention didn’t track the impact on cardiovascular disease prevention. And vice versa. The chopped-up terrain was basically feudal: I saw a civil war battleground instead of a collection of people working to save lives by fighting together against the real enemy. My research dissertation concluded as much and suggested a more unified approach, whereby cancer prevention and cardiovascular disease prevention research would leverage findings from each other. It was a bit awkward to share with researchers, but most weren’t too surprised by my findings.

  Nonetheless, my hyperfocusing paid off. I met my eight-month goal and was overjoyed to go home to Caitlin and to begin medical school at the University of Pennsylvania on a full scholarship. I would continue to lead AMF full-time as an unpaid executive director during my first year and a half of medical school. I’d catch up on medical school lectures by watching videos of them sped up to 2.2 times the regular speed. There was no time to sleep, so I took caffeine pills and drank energy drinks to keep me awake.

  In my mind, I was on a mission and I’d nearly gotten to the final stage.

  In truth, I was pursuing my obsessions with reckless intensity. Whether or not I could keep it up soon became a moot issue.

  IN JULY 2010, I had six months of med school rotations under my belt, and I could look forward to two weeks of vacation. All I wanted to do was see my family: my dad; my sisters, Lisa and Gena; and Gena’s daughter, Anne Marie, and husband, Chris. I couldn’t wait to get home, and I rushed through the terminal in the Raleigh Durham Airport to see them all waiting for me. When we got home, Gena told me she was pregnant with her second child. I was going to be an uncle again, which had new meaning since I’d delivered that little boy in Bethlehem. I thought about Caitlin, and the children I had penciled in to the life we were going to lead together, the life I hadn’t focused on enough to give a fighting chance.

  I was beyond happy for Gena and Chris. But for some reason all I could think about was going to sleep. I’d never felt so exhausted in my life. I wanted to stay up with my family and celebrate, but I just couldn’t.

  The next day, after twelve hours of sleep and several cups of coffee, I still wasn’t back on track. I had to skip going to the gym with Chris, which I had never done before. That day of rest didn’t cure my bone-tiredness. It was as though I had a permanent hangover. After several days of fatigue, I knew something was wrong, but when I discovered enlarged lymph nodes in my groin in the shower a few days later, I began to think it might be serious. I didn’t want to alarm my family, so I kept my discovery to myself, but I knew right away that the enlarged lymph nodes might be a sign of cancer. This wasn’t the first time my sisters or I had hidden something painful from one another. We’d learned from the best. My mom was a master at shouldering burdens without a word. When she battled cancer, we’d learn about symptoms she was struggling with only when the doctor asked specifically about whether she was experiencing them. She didn’t want to burden us, but she also didn’t want to lie to the doctor. And, following her lead, my sisters were protectively selective in sharing the specifics of my mom’s deteriorating condition with me while I was away at school.

  I thought about asking one of the surgeons I had trained under to check me out when I returned to Philadelphia; I thought a lymph node biopsy would make sense. But then I convinced myself I was just suffering from medical student syndrome—a form of hypochondria not uncommon to doctors in training as they learn about the approximately ten thousand diseases currently known to man. I tried to put my health concerns aside and enjoy this precious time with my growing family.

  * * *

  —

  I’m an empiricist. I trust my eyes.

  That’s not exactly a bold statement coming from a doctor and researcher. Western medicine in the twenty-first century is all about evidence. It’s sort of a package deal: the white coat, the stethoscope, and the scientific method. When you’re in the healing business, what you really do is test, test some more, test some more, test some more, and—if you’re lucky—test a little bit more. You’re a professional results gatherer. Every once in a while, one of those results comes back hot: an effective treatment. A new drug. A new procedure.

  More often than not, you end up with a dud.

  But that’s the trade-off, and it’s worth it. We trust the process. We trust the evidence.

  Which is why moments of intuition are so challenging for some doctors to understand. My own struggle with trusting my intuition is a classic case.

  After my vacation in Raleigh, I returned to that same hospital in Bethlehem where I transitioned to my final rotation on outpatient gynecology. But the real transition, the one that was overwhelming me, was of my sluggishness and fatigue turning into something undeniably worse. To keep up, I increased my intake of caffeine pills and energy drinks. I snuck into empty rooms multiple times a day and set my phone alarm for seven minutes later so
I could sleep for six. I continued to focus on anything I could except for what had gone wrong with Caitlin and my health.

  It was obvious that I was sick. But I didn’t just feel sick. Somehow, well before the worst of the symptoms manifested, well before I was incapacitated with organ failure, and well before I was admitted to a hospital and my family gathered…I knew I was dying. I just knew.

  That’s not exactly accurate. I had a different term for it in my mind: I felt doomed. That “knowledge” arrived well ahead of any evidence.

  So much for empiricism. It was a feeling.

  That’s the only way I know how to describe it. It’s like how dogs curl up beside their owners before they die or act erratic before natural disasters. They can sense that something bad is going to happen.

  I actually told three of my closest friends, Ben, Grant, and Ron, that I was dying. This was even before I felt sick in all the ways I eventually would. I was just really tired and had a few enlarged lymph nodes—and a sense that things were going to get very bad very quickly. They didn’t know how to react. I think they thought I was joking. I wish I was. Perhaps Grant knew something was truly wrong when I was too fatigued to work out. He and I had made a habit of doing pull-ups early each morning on a tree branch outside the dorm in Bethlehem where we were staying for our rotation. Looking back, I can see now that those pull-ups were to be among the final chances I had to build the physical strength I would soon so desperately need. I think Grant welcomed the respite from these early morning tree workouts, but he knew it just wasn’t like me not to have the energy or will to do them.