Chasing My Cure Page 6

  They also put in work outside of my room. Gena tracked down labs and talked to doctors about the possible diagnoses. She spent hours at night with Ron and Grant discussing results from tests that were run, what the diagnosis could be, and what additional tests should be run. I was glad someone else was gathering as much data as possible. I also think all the activity helped her to cope.

  Lisa focused her energy on how I was feeling and what she could do to help keep AMF afloat. She distanced herself from what the testing meant or what could happen to me so that she wasn’t too emotionally overwhelmed to be there for me. I understood that approach too. Cognitive overload is real, especially in a hyperactive environment like a hospital.

  My dad, true to form, took his own approach. I knew he was in pain himself. In some ways he was in his element—he was an orthopedic surgeon familiar with patients in dire need of fixing—but he struggled in this helpless situation just as he had struggled when he was unable to help my mom. Here was a patient he couldn’t fix. There was no rolling up his sleeves and getting to work. There wasn’t anything to do, because no one knew what disease needed to be stopped. He was powerless. But he didn’t check out. He looked at lab results he hadn’t seen since medical school and slept in the hospital room on a fold-out chair every single night so that I was never alone. He even pleaded with ICU doctors to take care of his baby boy. And sometimes, I now know, he just shut down and cried. But my family never cried in my room, just in the halls. They remembered what I had said to them seven years before about not crying in my mom’s room after her brain surgery, and they took the same tack with me. But my shift in perspective from caregiver to patient taught me something very important: It was okay for my loved ones to cry. It didn’t add to my stresses; it showed me they cared.

  My sisters and I had grown closer after my mom’s death, but my dad and I had grown apart. I had focused every day on how to keep her spirit alive through AMF and my medical training, while he understandably struggled to talk about her or relive memories. Our different strategies for carrying on disconnected us, though it was never a difference over substance, just method. Despite the distance that had grown between us, there was now not a hint of difficulty during my illness. In fact we grew closer than ever.

  Eventually he found a way to put his medical background directly to use. Unbeknownst to me, a family friend gave my dad the cellphone number of someone at the National Institutes of Health. My dad didn’t know who this doctor was or what he did, but that didn’t deter him and he wasn’t interested in asking. This wasn’t a social call. He had heard this doctor would be helpful, and he wanted answers about his son. My dad called at least once a day, often keeping this busy doctor on the phone for thirty to forty-five minutes at a time, and he would shout into the phone about the latest developments: “Hey, Foochi, I’ve got more results I want your thoughts on.” Then he would rattle off results and questions. I later asked my dad who this “Dr. Foochi” was that he had called so much, and he didn’t know, so I availed myself of Google…and was mortified. It was Dr. Tony Fauci (pronounced “Fowchi”)—the Dr. Tony Fauci—director of the National Institute of Allergy and Infectious Diseases, and one of the most revered physician-scientists in the world. Fauci was a presidential adviser, he’d helped develop George W. Bush’s President’s Emergency Plan for AIDS Relief—he’d won a Presidential Medal of Freedom. My dad had never been one for credentials and certainly didn’t care about them now. He would have done anything to get answers for his son, even hound a director at the NIH.

  Everyone was put into difficult positions. Following the retinal hemorrhage, I’d been given IV blood thinners to try to restore my vision and prevent something similar from happening again. But then one of my IV lines became dislodged and my blood was spilling onto the floor as if from an open faucet because of the blood thinners. Lisa was there and ran to get a nurse, who initiated a cascade of events—such as replacing the IV and reducing my dosage of blood thinners—that stabilized me. This was an important moment for Lisa, who’d always fainted at the sight of blood and needles and had been walking out of the room every time I had a procedure or a blood draw because she thought that she’d pass out. Since she didn’t faint this time, she was emboldened and thrilled to stay by my side in the room for a procedure later that night. But she’d clearly gotten ahead of herself, because she fainted and fell to the floor instead, resulting in an “adult rapid response team” to attend to her. Gena, meanwhile, was not happy that any of the medical professionals were focusing any of their attention away from her baby brother. Lisa woke up to a team of doctors and nurses checking on her and Gena shooting her a look.

  Throughout these first few weeks in the hospital, Ben was there for me too, and I was able to confide in him during moments of consciousness about some hopes and fears I had that I felt I couldn’t share with my sisters or father. More than anything, we talked about Caitlin. We talked about whether someone should contact her and whether it would be a good idea for her to visit. I didn’t want her to remember me in the state that I was in. I’d been so uncommunicative, unable to really speak when she broke up with me. Now, of course, there was so much that I wanted to talk to her about, but I knew I didn’t have the strength or mental acuity to have the kind of conversation that I wanted to have. I wanted to talk to her about the feelings I still had for her and the future. I felt naïve admitting that to myself, but it was true. It was hard to think of what to say about the future when I still had no idea what kind of future I had, if I had one at all.

  As I got sicker, I could no longer think clearly about Caitlin or discuss my health. My conversations with Ben turned to what I’d do if I survived—and what I’d need to do if I wasn’t going to survive. We agreed on small things that nevertheless felt momentous, and it lifted my spirits just thinking about them. If I made it, we agreed we’d go on a road trip to the Grand Canyon, and we promised that’d be the start of an annual road-trip trend.

  If I wasn’t going to make it, we discussed how I’d need to say goodbye to my family and friends before it was too late. Apparently, we discussed this many times. Since then, Ben has told me we kept having the same painful conversation over and over because my mind and memory were getting so slippery.

  And then, on day twenty in the hospital, we put that plan into practice. I was approaching the nadir of my illness and the likely point of no return. My brain fumbled through thoughts and was turned off most of the day; my lungs, abdomen, and legs were filled with fluid; and I hadn’t walked in almost three weeks. My doctors were running out of tests to do, but still didn’t have a diagnosis. Ben contacted my closest friends so they could come visit one last time.

  And they came. Nine friends and my uncle Michael visited over the course of three days. It was like office hours of the dying man: Each friend came in alone and stayed about half an hour. There were a lot of tears. The early visitors were luckier: With every day and every new visitor, I became less able to hold a conversation. Each goodbye was final.

  I know that they all would have given anything to help me get better. I faintly remember Liam, my six-foot-seven friend and former offensive lineman at Georgetown, offering a lung, a kidney, or a portion of his liver to me. My dad had just walked into the room and replied that he didn’t think the organs could help me because I couldn’t survive a transplant procedure. Then, he joked that Liam’s organs likely wouldn’t fit in me anyway.

  One friend’s visit provided what was possibly the last moment of pure, unadulterated joy I could count on. Francisco was a medical student too, which meant that when he leaned in to hug me in my bed—exercising superb bedside manner, I would add—his stethoscope slammed into my forehead. No problem—if you have a normal number of blood platelets coursing through your body, preventing bleeding problems. You probably have between 150,000 and 450,000 right now. I had fewer than 10,000, which put me at constant risk for a deadly brain bleed that could be trigge
red with the slightest trauma. Francisco and I looked at each other, both frozen, wordlessly wondering if his hug had just triggered a bleed that would kill me right then and there. When we realized I was in the clear, we laughed. Humor was never as distant as I would have guessed. Death seemed sometimes to have a kind of gravitational pull that inverted its own darkness. After everything I was going through, my friend almost poked me to death. It was funny.

  The risks of bruising and trauma aside, a physical therapist came into my room shortly thereafter to ask if he could help me walk. One of my nurses had sternly warned me the day before that if I didn’t muster up the strength to stand and overcome the pain of movement, I would never get out of the hospital. I wasn’t sure I was going to ever get out of the hospital anyway, but I was desperate to give it a try.

  Just sitting up in bed made me short of breath. It had been almost a month since I had walked—or stood, for that matter. But with Francisco by my side—he had been my weight-lifting partner, and the sturdiest spotter I’d ever known—I walked from my room to the nurses’ station, about twenty-five feet away, and back. At first, my legs didn’t move the way I was trying to instruct them to. It was as if I had forgotten how to walk. Muscle memory soon kicked in, but then it was my heart and lungs’ turn to struggle to keep up with my activity. I was completely out of breath by the fifth step. I had to take a break from my walk for some apple juice before returning to the ICU bed. Once I was back in, Francisco and I said a painful goodbye.

  Three years later, Francisco was paralyzed in a motorcycle accident and lost his ability to walk. He was an emergency medicine resident at Harvard at the time. Amazingly, he returned to his residency program and later became the first person in a wheelchair to graduate from an emergency medicine residency; he inspires me every day.

  When my friend Grant came to say goodbye, he wasn’t able to keep up the façade that everyone else had. He’s since described to me the horror of my appearance that day. My formerly muscular legs were bloated barrels with little form. Fluid had expanded all parts of my body, yet my face was thin and sunken, covered in weeks of scruff since shaving was too dangerous with my low platelet count. The expression on his face told me how terrible I looked at that point, how much my body had transformed. I hadn’t looked in a mirror in weeks, but now I didn’t need to.

  And then one more person came. She came without my asking. In fact, she came despite my hopes that she wouldn’t learn of my condition. But I couldn’t stop the inevitable spread of information, especially when it flowed through channels of good intentions and modern convenience. It was Caitlin’s mother, Patty, who’d gotten an email a couple days earlier with a link to a CaringBridge page and another email requesting that she pray for one David Fajgenbaum. Patty, hoping it was another David Fajgenbaum (though there aren’t too many of us), called my cell. My dad answered and explained what was going on. He didn’t beat around the bush: I was getting worse every day and no one knew what the diagnosis was.

  I woke up momentarily on the afternoon after Francisco’s visit, and my father was there. He told me about Patty, about the email, about her call.

  He told me she was coming to see me. With Caitlin, who had graduated from college and was working in the fashion industry in New York.

  I’d thought about Caitlin every day since I first went to the ER. I’d thought about what this would be like, to see her one more time. I’d discussed with Ben whether it was right, or best, for me or for her. And I’d made a decision. It came down to this: I didn’t want this to be her last memory of me. I was immobilized in bed, I was sick, and I was weak, both physically and mentally. I struggled to communicate, period, and could barely piece together complete or complex thoughts.

  My wish to die without Caitlin seeing me in this state was undoubtedly linked to my experience with my mom: The vision of her weakened by cancer just before she passed away was burned into my memory. I pictured Caitlin remembering me in my debilitated state years and even decades after I was gone—just as I now remembered my mom. That wasn’t the picture of my mother that she or I wanted me to hold on to. I wasn’t myself, and I didn’t want Caitlin to remember me like this.

  So, I held my ground. I told my sisters that I didn’t want her to see me. When Caitlin and Patty arrived the next morning, my sisters stopped them in the hospital lobby. I can’t imagine how awful this must have been for everyone. Caitlin and Patty were devastated, confused, and sad. They said they didn’t care how I looked. They just wanted to see me. They reluctantly walked out, hoping that my sisters would come back down to get them. My sisters never did. I asked them not to. I regret that now.

  After Caitlin came, and after I denied her access, and after I had said my goodbyes to my family and friends, I settled in to die. Nothing, ever, was worse than that. My health would actually deteriorate further—I would get closer to death still. But it was never like that, never again. I would never again give myself over to inevitability. My memories from those hours and days are tiled together into a kind of kaleidoscope vision. My consciousness was strained to breaking, but I remember reflecting on my life, thinking about my legacy and my obituary. I stared endlessly out of my hospital window, dreaming of what could have been with Caitlin and my life, but knowing I would never step outside again. I remember regretting nothing I’d ever done, only those things I hadn’t done or hadn’t said. And I remember praying.

  AFTER FOUR WEEKS in the hospital, my family decided to airlift me to the hospital my dad had worked at in Raleigh. I assumed they were moving me closer to home for the funeral service. But their intention was to try to take back some control of the situation—by moving me to a hospital where they knew the doctors, the nurses, and the building.

  I still didn’t have a diagnosis.

  In Raleigh, I made my home in the ICU at Rex Hospital, less than a mile down the road from Carter-Finley Stadium, where the heroes of my youth on the NC State Wolfpack football team and thousands of screaming fans had inspired my obsession with playing college football. I had prayed for miracles in that stadium many times as a kid, which never seemed to come true, and I had cried after losses.

  Though the stakes were different, I could relate with my younger self. There were more tests. There was more activity. There was even less to show for it.

  I remember my eyes focusing on something next to my bed—and realizing after some time that I was looking at a telephone cord. My sisters had just left the room, so I understood I was alone. By this point, my thought processes had been mostly rubbed away and I had been reduced to thinking in simple, combinatorial ways: I was alone, I was suffering, my death was imminent, my family was suffering as they watched me, and there was an object that could do something about all this. The idea brought me anguish but also relief. I didn’t want to die, but it made sense that I should speed up what was inevitable. There is a universe in which my next thoughts coincided with moving my arms over to the cord, wrapping it around my neck, closing my eyes, and never waking again. Finally, relief from a living hell. But fortunately that’s not this universe. Instead, and perhaps this signaled the first moments of rehabilitation, my thoughts went to my family and how killing myself would actually add to their trauma. That’s where my thoughts stayed, and then stopped.

  Then, for no discernible reason, I stabilized. I began to get better. My liver and kidney function tests improved, the fluid around my lungs and heart began to subside, which lessened the pain. The blood moles began to shrink. My red blood cell and platelet transfusions became less frequent. My nausea and vomiting subsided, so I could eat my first meal in five weeks. I walked half a lap around the ICU. Then, I walked a whole lap around the ICU. Early on in my hospitalization at Penn, doctors had begun pumping me full of high-dose corticosteroids—something you do in the ICU when you don’t know what else to do. Though there had been no immediate change in my condition, perhaps the cumulative weeks of this treatment had somethi
ng to do with my improvement. My mind started to come back online too. The telephone cord next to my bed was just a ratty old hospital telephone cord. A nuisance and an anachronism. Nothing more.

  I laughed for the first time in a while too, perhaps since Francisco had poked me. After one of my walks, an ICU doctor came into my room. We knew him well, by that point. Among me and my sisters, he was an established character: He kept coming in and trying to impress us with how he’d gone to this college and that medical school and had that degree. It was tiresome, but not exactly rare in medicine. We just rolled our eyes. This time, though, he drew his material from another source. He looked at me sternly and said, “Before you go on more walks, we need to get you—um, what’s the word?” He paused.

  “I was in Italy for the last week, so my brain is still thinking in Italian and I can’t think of the word in English…ah…rubber…sole…” This time, his pause lasted for even longer.

  “Oh! Sandals. We need to get you sandals so you don’t get any blisters since you haven’t walked in so long.”

  He grinned at my sister Gena. It was incredible. He was trying to simultaneously impress a decrepit ICU patient, flirt a little with that patient’s pregnant sister, and humbly brag about his jet-set lifestyle. He left, and we cracked up. It felt amazing to be laughing again and, I have to admit, just as amazing to bond over someone else’s ridiculousness.