Chasing my cure A doctor's race to turn hope into action : a memoir

While attending medical school, a young man develops a mysterious illness. Symptoms include profound fatigue, night sweats, enlarged lymph nodes in the neck, and eruptions of blood moles on his skin. He experiences multiple organ system failure involving the liver, kidneys, heart, and bone marrow. Eventually he is diagnosed with idiopathic multicentric Castleman disease a very rare condition described by the author as occupying ""a no-man's-land between autoimmune diseases and cancers."" Fajgenbaum, the doctor-turned-patient, chronicles the many challenges of coping with a complex disease and his quest for a cure. At times his treatment includes multiagent chemotherapy, high doses of steroids, transfusions, dialysis, and experimental drug regimens. He becomes a potent advocate for himself and other patients by performing research and cofounding a collaborative network focusing on Castleman disease. Fajgenbaum examines the uncertainty and vulnerability experienced by those caught in the realm of sickness. He highlights the inestimable importance of willpower, hope, and the support of family and friends as he recounts how serious illness can mutate any previous perception of normal life.--Tony Miksanek Copyright 2010 Booklist

Fajgenbaum, a fellow of the College of Physicians of Philadelphia, chronicles a mysterious disease previously neglected by the medical community in this remarkable memoir. When Fajgenbaum, the son of an orthopedic surgeon father, entered the University of Pennsylvania Medical School, he still believed strongly in the power of medicine "to find answers and cures," despite the recent death of his mother from brain cancer. However, during his medical studies, he began feeling fatigued, and was eventually diagnosed with Castleman Disease, a rare malady that attacks the vital organs. Fajgenbaum writes lucidly and movingly as both a patient and physician. He was placed on a regimen of one of the only drugs available for the disease, but became bereft when he suffered a relapse; he then vividly recalls his decision--along with a team of cutting-edge researchers--to infuse himself with the experimental drug siltuximab, which had not yet been approved by the FDA. Five years later, he now serves as an advocate for research into a disease that affects 6,000 people a year. Fajgenbaum's stirring account of his illness will inspire readers. (Sept.)

A Pennsylvania physician races to find a cure for his rare illness.In this moving memoir, Fajgenbaum (Medicine/Univ. of Pennsylvania) details his harrowing bout with a rare disorder called Castleman disease, which invades lymph node tissue and systematically wreaks havoc on major organ function. He amiably describes his early days on medical school rotations nervously fumbling through infant deliveries and delivering proactive patient care. As the son of an extroverted orthopedic surgeon, expectations were high, and there was a lot of ground to cover in a field he pursued with "reckless intensity" after his beloved mother succumbed to cancer when he was a teenager. Throughout the book, Fajgenbaum writes with consistent urgency and great emotion about how his mother's illness inspired his future livelihood: "I was impaled by my mother's death," he writes. While in medical school, he noticed his energy flagging and a group of troubling symptoms, including skin lumps and severe abdominal pain. After more than a month of inconclusive tests and near-fatal conditions, Fajgenbaum remained without a diagnosis but suddenly began temporarily stabilizing. Doctors finally reached a determination of Castleman disease, which carried an uncertain and possibly fatal prognosis. The author, a former weight lifter and Georgetown quarterback, recognized this personal health conundrum as a challenge he was more than prepared to tackle. As he began dedicating his medical career to unlocking the mysteries of the disease, his research and his work with other sufferers would also teach him about hope, about his capacities and limitations as a doctor, and about the "often unfair disconnect between the best that science can offer and our fragile longevity." Offering a distinctively uncommon perspective on disease and doctoring, Fajgenbaum also writes earnestly and frankly about the unique brand of humility one must accept as a medicinal healer with a mysterious, possibly deadly malady.A powerful, highly personal chronicle of a doctor's feverish rush to find a cure for the disease that afflicts him. Copyright Kirkus Reviews, used with permission.

INTRODUCTION After you've mastered the basics of technique--hand placement, head tilt, and timing--and after you've accepted the inevitable feeling of shattering ribs beneath the heels of your hands, the hardest thing about performing CPR is knowing when to stop. What if one more pump could do it? Or one more after that? When--no matter how hard you push, how hard you hope and pray--that pulse just will not return, then what comes next is entirely up to you. The life has already been lost. But hope hasn't been, not necessarily. You could keep that alive at least. You could keep doing compressions until your arms and shoulders are too worn out to continue, until you can't push hard enough to make a difference, much less break another rib. So--how long do you try to bring someone back? Eventually you will remove your hands from the body, eventually you'll have to--but eventually isn't a number. It isn't guidance. You won't see it in a CPR diagram. And it doesn't even really answer "when" so much as "why." When you eventually stop, you stop because there's no more hope. That's what makes the decision so difficult. Your effort allows you to hope that life is possible, and your hope inspires you to push even harder. The three of those things--hope, life, and effort--chase one another, keep one another moving around a track. I have performed CPR twice in my life. Both times, the patients were nearly dead when I began my relentless chest compressions and prayers. And both ended up dying. I didn't want to stop. I wish I was still going right now. And I continued to hope that I'd see a pulse appear on the heart monitor even after I had stopped my chest compressions. But hoping and wishing are often not enough. Hope can be a force; but it isn't a superpower. Neither is any part of medicine, much as we'd like it to be. It can feel like one, though. When I set out to be a doctor, I had already borne witness to incurable disease and inconsolable sadness--my mother had died of brain cancer when I was in college--but I was still optimistic about the power of science and medicine to find answers and cures. Because to be honest, long after I could reasonably blame it on youth and naïveté, I basically believed in the Santa Claus theory of civilization: that for every problem in the world, there are surely people working diligently--in workshops near and far, with powers both practical and magical--to solve it. Or perhaps they've already solved it. That faith has perverse effects, especially in medicine. Believing that nearly all medical questions are already answered means that all you need to do is find a doctor who knows the answers. And as long as Santa-doctors are working diligently on those diseases for which there are not yet answers, there is no incentive for us to try to push forward progress for these diseases when they affect us or our loved ones. I know better now. I've had a lot of time over the past few years to think about doctors, and they've had a lot of time to think about me. One thing I've learned is that every one of us who puts on a white coat has a fraught relationship with the concept of authority . Of course, we all train and grind for years and years to have it. We all want it. And we all seek to be the trusted voice in the room when someone else is full of urgent questions. And the public expects near omniscience from physicians. But at the same time, all of that education, all those books, all those clinical rotations, all of it instills in us a kind of realism about what is and what is not ultimately possible. Not one of us knows all there is to know. Not even nearly. We may perform masterfully from time to time--and a select few may really be masterful at particular specialties--but by and large we accept our limits. It's not easy. Because beyond those limits are mirages of omnipotence that torture us: a life we could have saved, a cure we could have found. A drug. A diagnosis. A firm answer. The truth is that no one knows everything, but that's not really the problem. The problem is that, for some things, no one knows anything , nothing is being done to change that, and sometimes medicine can be frankly wrong. I still believe in the power of science and medicine. And I still believe in the importance of hard work and kindness. And I am still hopeful. And I still pray. But my adventures as both a doctor and a patient have taught me volumes about the often unfair disconnect between the best that science can offer and our fragile longevity, between thoughts and prayers and health and well-being. This is a story about how I found out that Santa's proxies in medicine didn't exist, they weren't working on my gift, and they wouldn't be delivering me a cure. It's also a story about how I came to understand that hope cannot be a passive concept. It's a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action. And when it does inspire action in medicine and science, that hope can become a reality, beyond your wildest dreams. In essence, this is a story about dying, from which I hope you can learn about living. Excerpted from Chasing My Cure: A Doctor's Race to Turn Hope into Action; a Memoir by David Fajgenbaum All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.