Chasing My Cure

by David Fajgenbaum

  What was different then, that day in the hospital with my dad?

  I was different.

  In my doctor role, I’d seen astonishing instances of patients in terrible circumstances still seeing the essential comedy in their conditions. I’d always just chalked it up to a kind of avoidance. People are geniuses at turning away from what’s in front of them. Humor seemed to work that way.

  Now I knew that I’d had it all wrong. Humor didn’t let me avoid anything. It made me look my suffering in the eye—and laugh at it. Facing my horrible moments with laughter was just as fundamentally a rejection of Castleman’s dominion over me as anything else I was doing. It cleared my mind; it stiffened my resolve. It was entirely up to me to determine what was and what wasn’t funny. Perhaps most important, humor is social. For me and my family, there was never a better way to reset our collective resolve than laughing together. My mom had first taught me this when we laughed together as she did donuts in that grocery store scooter. Now my dad and I shared a moment like this too.

  * * *

  —

  After seven weeks of multiagent chemotherapy, daily transfusions, and frequent dialysis sessions, I was well enough for discharge. Just before we left, I told one of my favorite nurses, Norm, how much I couldn’t wait to get out. “I’ve been in hospitals for most of the last six months,” I added. My dad, who was sitting beside me just as he’d been for the last six months, interrupted and said, “What is this ‘I’ve been in the hospital’? We’ve been in the hospital!” It was true, and I’d clearly taken his presence for granted—he’d canceled all surgeries and office appointments for the last six months and slept in my hospital room nearly every night; only when my sister Lisa came to visit did he go to a nearby hotel to sleep in a bed. And he was always back first thing in the morning. His was a thankless job—bearing quiet and worried witness to his Davey Boy’s plight day after day. My energy level and optimism often rose when friends and other family members came by—my godparents and their son Conner, who was like a brother to me, were rejuvenating visitors. But when they left, my own energy and optimism would tank. And my father would be there to bear that too.

  Home to North Carolina we went. I’d won round three, but it was a TKO. The miracle drug we’d pinned our hopes on—the IL-6 blocker siltuximab—hadn’t worked, and we’d had to call in an all-out chemo strike. Even still, Dr. van Rhee (and I) reasoned that maybe I was just too sick for siltuximab to work by the time we started using it. Maybe my IL-6 levels had actually been very high when the test results previously came back normal, maybe they were just not being detected by the IL-6 test. We thought and hoped that siltuximab might still work to prevent another relapse even if it wasn’t able to stop a relapse in its tracks. After all, it supposedly had wonder-like powers in treating iMCD. I left Dr. van Rhee’s office with a plan written out on a piece of yellow paper: siltuximab every three weeks.

  The uneasiness I felt, even leaving Arkansas with my health returning to me, was this: We’d been ramping up our counterattacks each round—but there was nothing more powerful left in the arsenal. Also, just as much as iMCD was a ticking time bomb, these drugs were creating another. A human body can take the onslaught of such toxic chemotherapy only so many times before the damage is too great, the so-called lifetime max dose. Most patients never get to that point, where the heart and other vital organs are too damaged to keep going or a cancer is spawned because of the DNA damage caused by the chemotherapy intended to kill the disease. If chemotherapy was my only solution to a relapse, how many more episodes did I have left before the chemo itself killed me? But I kept these thoughts at bay. Instead, I reminded myself: Siltuximab was going to keep me in remission. Plus, I had the top expert in the field caring for me. I just knew that he and teams of others must have been working on figuring out the mysteries of iMCD; it wouldn’t be “idiopathic” for long, I thought. But solving those mysteries didn’t really matter for me, because I was on the miracle drug for my disease. It wouldn’t come back.

  * Tocilizumab and siltuximab both inhibit the IL-6 signaling pathway. Tocilizumab blocks the receptor for IL-6 from binding with IL-6. Siltuximab binds directly to and neutralizes IL-6.

  AS SOON AS I got to the airport back home in Raleigh, I did something I hadn’t done in ten years: I sat down at Five Guys and had a hamburger.

  I hadn’t eaten any form of ground meat in a decade. I had also carefully removed the skin from every piece of chicken, and I hadn’t had fried foods or any fat-filled additive like mayo or butter either. I’d been a model of clean eating, filling my plate with fruits, vegetables, fish, (skinless) chicken, and whole grains. Dried mango slices were my splurge food. In the name of good health (and some amount of vanity), I had tamped down the urge to eat for joy; “I don’t eat for taste,” I’d once proudly declared to my friends while itemizing the calorie count and grams of protein on the plate in front of me. Even still, I had now nearly died several times—and it was hard to keep up the pretense that food was the culprit. Indeed, my own well-nourished body had turned on itself. I’m not sure if it was my realization that pristine nutrition can take you only so far toward the uncertain state of good health (a “stronger” immune system was actually the last thing I needed) or the fact that I’d been fed through a feeding tube for weeks, but as I walked through that airport, my carnivorism was reawakened. I no longer saw the wisdom in cutting off a channel to joy.

  I savored that hamburger. It was like a feast after a long, abstemious Lent—or that first solid meal after you have the flu.

  Sitting down and eating it also gave me a moment of quiet to think about something I’d been mulling over the past few weeks: a new orientation for a new phase in my battle for life (or my victory lap phase, as I thought of it—wrongly—then). I was envisioning a new modus operandi. Think it, do it kept reeling through my mind. The comma was important. It was not a full stop. Not thinking of some things and doing some other things haphazardly but thinking of some things, then doing those same things, and there was no stopping halfway through.

  I didn’t—and still don’t—see this new mantra as an excuse to be impulsive; I wasn’t planning to blurt out exactly what was on my mind, or manically start buying things online. Think it, do it has developed into a guiding principle of sorts. Don’t just let thoughts come and go. Every thought should be broken down and evaluated to determine if it’s worth doing. If so, then it’s go mode—whether or not you have all the ideal skills to do it. This has made me more scrupulous about what I really want, and which thoughts actually warrant doing. It’s made me more economical about what I spend mental energy on, yet ironically it also helps me banish the doubting hobgoblin I have living in the back of my mind. We often think of doing things or saying things that would have a material impact on our own lives or the lives of those we love but quickly talk ourselves out of them. Think it, do it helped me to cull useless thoughts, and to elevate those worth doing. Eating a hamburger that day felt like the latter.

  I’d started piecing together this new orientation back in Arkansas, during the first days of smooth sailing after the worst of my third brush with death. It came from the very simple realization that the regrets that ate at me the most as I prepared to die weren’t about anything I’d done; my greatest regrets were things that I had thought of doing but never did. I know I’m not the first to come to this conclusion: “No one on their deathbed ever wishes they’d spent more time at the office” is a cliché because it’s true. When you’re healthy, the things that keep you up at night are memories: the stupid joke you told at the dinner party, the bad pass, the time you told the girl you loved her…on the second date. Memories you’d rather not have, but memories nonetheless. But when you’re dying—or at least when I was dying—these memories become quite insignificant. It’s the absence of memories that you wish you had made and the realization that you’ll never get the chance to make them that coalesce into a ho
rribly vivid pit of regret in your stomach (and trigger the alarm for a rapid heart rate on your ICU monitor). I must have imagined marriage and kids with Caitlin a hundred times, half in delirium and half in agony. And wished that I had at least fought for our relationship or gotten back together when she gave me the chance so we could have had what I thought were my final six months together. I grieved for memories that didn’t exist. I told myself that if I made it, I’d do everything in my power to make sure my thoughts turned into actions.

  * * *

  —

  That night we had a family feast. We had lots to celebrate: I was home, and Gena had had a second healthy daughter while I’d been in Little Rock. Everyone came to my dad’s house for dinner. I was too weak to lift even a bowl of food, let alone cook or ferry serving dishes to the table, but I helped out by setting the table. It was the most joyful table setting of all time. Martha Stewart couldn’t have done better. I smiled ear to ear as I folded the napkins precisely into perfect triangles and studiously counted my every blessing.

  Buoyed by the evening’s happiness, I decided to quiet the hobgoblin in my head and get on with “doing.” I called Caitlin. We had talked periodically on the phone while I was in Arkansas, and just that afternoon (after my insight-inspiring hamburger), I had sent her her favorite flowers and what I remembered to be her favorite candy at her office. The act was in no way heroic, but the action was significant. My internal naysayer had tried every which way to talk me out of sending the gifts. You’re not even dating, she’ll think it’s weird, just wait to do something else some other time. These thoughts had typically won out earlier in my life. Now, though, enlightened by my ICU experience and new motto, I just did it.

  But I couldn’t fool myself into thinking anything was settled—showing that I remembered her flower and candy preferences was a nice first step, but it couldn’t begin to undo the damage I’d done by twice refusing her at my deathbed. Now, I plucked up the courage and asked if she’d visit me in Raleigh. She agreed. I took her willingness to travel to see me as a good sign, but I found plenty of reasons to worry anyway. Even though I was getting better, I still had a belly filled with seven liters of fluid, and I was bald from the chemotherapy (some people can rock that look; I…cannot). My appearance was all that I could think about. I was fixated on it. But of course, my disfigured body was the tip of the proverbial iceberg—it was what I could see of the Castleman disease and a reminder of the much more troubling issues below the surface. The Castleman disease was out of sight and out of mind for the time being. My looks were definitively not.

  It had been more than a year since we had seen each other in person. I worried about the first fumbling, awkward moments, and I worried about what came after them. To be frank, I worried that Caitlin wouldn’t want to get back together given all I was going through and all I had put her through. That would be understandable. It would be awful, but understandable.

  Still, I was going to try. I was thinking it, now I was doing it.

  Caitlin got to Raleigh a few weeks later and came right to my sister’s house. This time I didn’t tell her to stay outside or talk to her through an intermediary. I met her at the door. She saw me. I saw her seeing me. After visiting with my sister and my niece whom Caitlin had spent years babysitting, Caitlin and I had our first moments alone sitting on my sister’s couch, a couch that we’d spent so much time on together when we were dating.

  I had one hand on Caitlin’s shoulder and the other on my head in a futile attempt to hide the baldness.

  But she wasn’t thinking about my appearance. She had something else on her mind: She told me that she wanted us to get back together.

  “Are you sure?” I said as I looked away. I didn’t want to make eye contact, I didn’t want to betray how bad I wanted this. I needed her to make the decision herself, independent of what I wanted.

  * * *

  —

  When you get sick, it’s nice when people act out of sympathy. It’s great when people take care of you, and bring you comfort. When you get very, very sick, it’s…no longer always as nice. You worry that they are doing what they are doing for you out of a sense of obligation or fear of your imminent demise. I’m sure most of the time most people can’t untangle their motivations even if they try; they are simply doing what they are moved to do. But as the beneficiary of that kindness or attention, you start to worry about what people would have done in the absence of your condition. You know that they are being themselves, yes, but they are also responding to you in the face of your disease. That means that you are no longer just you, the person they might be happy or angry with, the person they might have hugged or shouted at under different (healthy) circumstances. Instead, you are now and perhaps forever a person with a disease. And that means that what people are willing to do for you or however they might be willing to sacrifice their own needs is now predicated—consciously or not—at least a little on your illness.

  Don’t get me wrong, I wanted to be in this world as a team with Caitlin, together again, more than anything. But I also ached and felt guilty for the decision she was facing. I saw her choices as to throw her lot in with someone for whom there might not be much of a future or to walk away and perhaps carry the ache herself of knowing that she had disappointed a (possibly) dying man.

  But I know now that my health had little or nothing to do with what she’d decided she wanted for us. Instead, she’d been wrestling with whether or not I might change the frenetic pace at which I’d been chasing my ambitions and whether she could live with it if I didn’t. She’d been thinking about how she and I could make each other the top priority in our respective lives and how she would feel if she decided not to find out whether it was possible. That I was so sick accelerated her desire to get on with trying. Pitying me or not wanting to let a sick man down had nothing to do with it.

  * * *

  —

  I sat there, still afraid to meet her gaze. She waited for me to finally look up, then gave me a look I’ll never forget: It was “Are you crazy?” and “I am sure” all at once.

  “But I’m so fat and bald!” I protested kind of weakly. She held my eyes and didn’t waver, though she added an eyebrow raise that told me that assuming she was put off by my physical state was actually kind of insulting.

  So I got to the root of the issue: “Caitlin, who knows when this thing might come back again?”

  “Who cares?” she said emphatically.

  And that was that. With those two words, she secured two things for me: (1) my happiness, and (2) my knowledge that her love was unconditional. I now realize that very few people my age are lucky enough to experience this security, the sure knowledge that she would be with me through thick and thin, fatness and baldness, through terrible times, and more. Before she left on that Sunday to return to New York, we made a plan to visit each other as much as we could. Her busy work schedule and my frailty meant that visits wouldn’t be as often as we’d like, but it felt good to have a plan.

  In the weeks and months to come, I would have to emphasize again that my sisters had, in fact, been doing exactly what I’d repeatedly asked them to do. And I had to try to explain my somewhat twisted logic: Denying Caitlin access to me was actually the highest form of prioritization I could think of. I truly thought I was doing the right thing in preserving her memories of me as a fully alive and healthy man.

  I would come to understand that my imagination had been limited. The highest form of prioritization would have been to allow myself to be fully vulnerable in her presence.

  When I had strung together five weeks of good health, my longest period out of a hospital in seven months, I was eager to believe I’d beaten this thing after all. That was temporarily a terrific feeling—but it also made me put aside my burgeoning investigation into my disease. Castleman disease was in my rearview mirror, I thought. There were more pressing things: I could
finally get up and begin exercising again.

  Of course, I had to start small. I began with laps around the kitchen and living room. Not exactly thrilling stuff, but I added spice by playing my favorite walking song on repeat, a weird Soviet-era song I found on YouTube apparently called “Trololo.” I recently learned that the actual title roughly translates into “I am very glad, because I’m finally back home”—which couldn’t have been more fitting. But the underlying meaning wasn’t why I listened to it over and over again. The beat perfectly matched my slow strides as I was building back my strength, and it was great to sing along to. After months of deconditioning, these laps raised my heart rate, made me laugh, and kept me going. That was enough for now.

  I didn’t neglect my muscles. Soon I was pumping those little two-pound weights you see in senior centers. My four-year-old niece, Anne Marie, was unimpressed. She took the weights out of my hands and showed me that she could do…exactly what I was doing. She also took to copying me in another way: She started wearing hats, just as I was doing to hide my baldness and then my patchily regrowing hair. It was heartwarming to have a judgment-free little disciple, someone who looked up to me and followed my lead. But I was clearly no longer the Beast I had once been.

  I still had the Beast in my heart, though. And I had a ready store of memories from my football days—when I courted pain, pushed through it, and gained strength from the ordeal—to help me push through. Like the time I was made to roll as fast as I could on an icy football field in subfreezing temperatures until I threw up—well, until everyone threw up—as a punishment for being late to an off-season workout. I hated it at the time, but now I wondered where I’d be if I’d never had the repeated opportunities to face up to agony within the controlled space of the gridiron and weight room. Those experiences were in my bank, and they were paying dividends as I worked my way back from zero. As my weights increased, I took pictures of myself every week to document my transformation. I went from looking pregnant and famished to looking less pregnant and more Beastish.