Chasing My Cure

A Doctor's Race to Turn Hope into Action; A Memoir

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The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure—and became a champion for a new approach to medical research.

“An extraordinary memoir . . . It belongs with Atul Gawande’s writings and When Breath Becomes Air.”—Adam Grant, New York Times bestselling author of Originals

David Fajgenbaum was a former Georgetown quarterback nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for the equivalent of a game day overtime: a second chance.
 
Miraculously, Fajgenbaum survived—only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself.
 
More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment that he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide.

“A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope.”—Angela Duckworth, #1 New York Times bestselling author of Grit

Under the Cover

An excerpt from Chasing My Cure

Chapter One

In my second year of medical school I was sent out to a hospital in Bethlehem, Pennsylvania, an old steel town that had bottomed out in the nineties but had since bounced back into a vibrant, small community. I could relate. I had also gone through my own dark valley—losing my mother to cancer six years prior—and now I felt like I had climbed up and out onto the other side. My mom’s death had inspired me to go into medicine in the first place; I had dreamed of helping patients like her, and I yearned to take revenge on her disease.

Picture me as a warrior in the battle against cancer, training so I could lay waste to the so-called emperor of all maladies, the king of terror. Picture me sharpening my tools and arming for war, stoic and full of wrath.

But first picture me on my obstetrics rotation, and absolutely terrified. On this particular day, I felt less like a warrior than like an actor. I had to keep rehearsing over and over in my head what I needed to do. I reviewed my steps, practiced my lines, worked through my checklist, and tried to remember how to play doctor. It really did feel like I was about to go onstage. The hospital room curtains had been thrust open, and the sun was streaming in, throwing a heavenly kind of spotlight on the first-time parents and all over the blue covering the nurse had just put down. Though both prospective parents were beaming with excitement, the mother’s forehead glistened with sweat; I’m sure mine did too.

This husband and wife team were in their late twenties, which made them older than I was. It crossed my mind that Caitlin, then my girlfriend of three years, and I could find ourselves in this very same position soon enough, and that was a happy, calming thought. But perhaps I looked even more nervous than I thought I did, because the father asked, “This isn’t your first time, is it?”

A scary thing about medicine is that everything in it has a first—every drug has a first patient, every surgeon has a first surgery, every method has a first try—and my life at the time was dominated, daily, by first times and new challenges.

But no, I assured this father-to-be I’d done this before. What I didn’t say was: once before.

Then I was in position. My second Red Bull of the morning had kicked in, and I was ready.

As I cycled through the stages of labor in my mind, I was interrupted by the first sign of the baby—his head.

Don’t drop it, Dave. Don’t drop it, Dave. Don’t drop it, Dave.

And that was that. I guided the baby safely into the world (it’s actually easier than you might think), and I watched him take his first full breath of life. A profound sense of purpose spread through my body, into my limbs, and overwhelmed my senses so that I couldn’t even notice the smell of feces and blood that attends every delivery. It didn’t look like it did in movies. There was a lot more winging it, a lot more fear, a lot more relief.

There would be many times, later on, when I would remember that baby I delivered. What I did wasn’t heroic or complicated or extraordinary by any measure. It was routine. But I had helped new life take flight and that was extraordinary. Too often hospital medicine isn’t about new life—when doctors, nurses, and patients are assembled in a room, the reason is usually dire.

My first rotation working in a hospital where I could see this firsthand had been in January 2010, only a few months before my Bethlehem (Pennsylvania) baby. After four years of pre-med, a master’s degree, and a year and a half of medical school coursework, it was finally time to apply my medical knowledge in situ. No more shadowing, no more observing. I might actually help save lives. I got about three hours of sleep the night before my first day—I couldn’t remember being that amped up since my days of playing football. It was below freezing and before dawn when I got up to go to the hospital, but my adrenaline practically carried me there. I’d walked through the same entrance and atrium of the Hospital of the University of Pennsylvania many times before, but today it was totally different. The floors shone brighter. It was larger—or I was smaller. I smiled and waved at the security guards, who met my glee with dutiful reciprocity. They had likely seen dozens of glowing medical students that morning. Each of us, of course, dreaming that we’d be cracking cases and helping patients today like in an episode of House.

My first stop was the psychiatry resident call room, where I was supposed to meet up with what’s called the psychiatry consult service. Basically our job would be to visit patients throughout the hospital whose treating physicians had decided they could benefit from additional psychiatric assistance. Some patients were simply delirious after surgery, but others had said they wanted to hurt themselves, or other people.

Psychiatry wasn’t what I really wanted to be ultimately doing—all I could think about doing was fighting cancer—but I was eager to begin my clinical career on a good note. So I attacked the day with egregious enthusiasm. I greeted a woman a few years older than me—one of the residents—who was already engaged deeply in something on her computer screen. I extended my hand, introduced myself, and announced—unnecessarily—that this was my first rotation.

Then, as now, I was terrible at masking my mood. It has always been so achingly obvious. The resident could probably smell the nervousness on me.

Another medical student came in after me. Well, as I soon learned, he wasn’t exactly a medical student, even though our role there in the consult service would be the same. He was already an oral surgeon; he’d already completed dental school and dental residency. He was now coming back to undertake a few medical school rotations that are mandatory to practice as an oral surgeon. I was competing against someone in his eighth year of medical training.

And—yes—it was a competition. We were both dressed like the plebs we were: in the same short white coats, just barely reaching our waists. This set us apart (as it was intended to do). The attending physician and other resident both arrived resplendent in coats that nearly reached the floor. My legs never felt so naked. Especially because Oral Surgeon over there actually could have worn the longer coat if he’d really wanted to. He’d already earned it. He’d already made his way through the gauntlet. Becoming a physician requires first acing premed courses in undergraduate, and then grinding through four years of medical school. That’s step one. After that, you technically get your long coat, but you still need to complete residency and possibly fellowship training, which can last from three to more than twelve years—depending on specialty—before you can finally practice on your own as an attending. I still had a long way to go. But a first day was a first step.

Our morning greetings and introductions (and my private ruminations) were interrupted by the beeps of a pager. Our first mission of the day. We rushed down the hall in order of rank—Oral Surgeon and I took up the rear.

When we got to the patient’s room, a lump immediately rose in my throat. The room was dark. The patient was very sick. His cheeks were swollen from the corticosteroid treatments he’d been on, which reminded me of the way my mom had looked when being treated (also with corticosteroids) for her cancer. Her swollen cheeks had exaggerated her smile. The memory was bittersweet. I knew that I was going to struggle if I constantly thought of my mother. But I couldn’t shut those memories out. I didn’t want to—remembering her smile with those big cheeks made me smile.

This patient wasn’t just sick; he was critically ill, and our goal was to evaluate whether or not he had the capacity to make medical decisions for himself. A woman sat beside the bed, holding the patient’s hand. His wife, we soon learned. Tears dripped down her face, untouched, and eventually made their way down between her hands, where she’d gathered some blanket. A small piece of comfort, now also damp with her sadness. The patient was confused, and he struggled to answer our questions on the mental status exam.

“Where are we?”

“I’m in New . . .”

We were in Philadelphia.

“What year is it?”

“Nineteen seventy-seven.”

It was 2010.

We huddled outside the room, but the decision wasn’t difficult and the discussion was brief. The patient didn’t have capacity to make his own medical decisions; his wife should make them for him.

Of course, medicine isn’t always so binary. It’s not just life or death, joy or despair. A middle ground exists where joy is possible in the face of death.

- About the author -

David Fajgenbaum, MD, MBA, MSc, is a graduate of Georgetown University, the University of Oxford, the University of Pennsylvania, and the Wharton School. An assistant professor of medicine at the University of Pennsylvania and the associate director for the Orphan Disease Center, he is cofounder and executive director of the Castleman Disease Collaborative Network, as well as the cofounder of the National Students of Ailing Mothers and Fathers Support Network. Dr. Fajgenbaum has been recognized with multiple awards, including the Forbes “30 Under 30” for healthcare and the RARE Champion of Hope Award for science. He has been profiled by major media outlets such as The New York Times, Forbes, Science, Reader’s Digest, and the Today show. He lives in Philadelphia with his wife, Caitlin, and their daughter, Amelia.

More from David Fajgenbaum

Chasing My Cure

A Doctor's Race to Turn Hope into Action; A Memoir

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Chasing My Cure

— Published by Ballantine Books —