Chasing My Cure Read online

  I was finally discharged after seven weeks of hospitalization, mostly in the ICU. I was better—and yet I was no closer to knowing what was wrong with me than on day one.

  On the way out, I asked another ICU doctor what he thought had almost killed me (I knew it had become a topic of conversation—doctors love a good mystery), and he said, “I don’t know what it was, but let’s hope it doesn’t come back.” His passive use of the word hope rattled me.

  * * *

  —

  Soon I learned about thousands of people who had been praying for me, daily. I heard about nuns in Trinidad (where nearly all of my extended family still lives) praying for my health. Friends and family and supporters—a category of people I knew all too well from my life leading AMF—told me about how much they had prayed for my recovery, and how happy they were that I was better.

  I was appreciative of the prayers, but a little skeptical of some of the commentary. Some friends and family assured me it was the prayers that saved my life and that the illness wasn’t going to come back because it was a test from God, which I had passed. Apparently, God was keeping track of how many people prayed for me before making a judgment, and He didn’t test twice. I understood what they were trying to say, but I recalled feeling the same way about my mom after the first postsurgical MRI didn’t show any sign of cancer. Now she was free; she beat it. We continued to pray. And then I recalled when it did come back and our prayers couldn’t save her. Others told me that God had saved me because there was still more for me to accomplish in this world. But I knew that I was no more deserving or capable than my mom or any of my patients who hadn’t made it. I tried to put these thoughts out of my mind.

  I was thrilled to have something else to think about: Caitlin. Being incapacitated for weeks had finally given me time to reflect on how much I cared about and missed her. Shortly after I returned home from my lengthy hospitalization, I got up the courage to call her and tried to explain why I had insisted she not see me in my near-death state. This was a very difficult conversation—my keeping her from seeing me had hurt her deeply. She told me that it was okay; she accepted my explanation that I just didn’t want her to see me—and remember me—in such a weak state. Since then, I’ve learned that she didn’t actually buy my explanation—she thought it was my sisters who didn’t think she should see me and that I was just covering for them.

  Talking to Caitlin again made me feel something even better than healthy: It made me feel normal. It was awkward sometimes, but it was mostly like old times, it was great. We avoided talking about getting back together, though she did invite me to come up to New York for Halloween. We left it at that—I didn’t know if my health would allow it just yet. But it felt great to be asked.

  Soon thereafter, Caitlin’s parents traveled to Raleigh for a previously planned trip. They stopped by my dad’s house, and we took a walk together. I was thrilled to have them visit. Patty was more like my mom than anyone I had ever met, infinitely proud of her children, strong in her principles, and always ready to help anyone in need (our immediate connection helped us to quickly get past the shirt-ripping episode from that high school basketball game years before). Caitlin’s dad, Bernie, was both an amazing father and a big-time TV executive. He also managed to devote meaningful time as a board member of several local charities. I admired his ability to live seemingly multiple lives at once—and in balance.

  They didn’t let on even the slightest bit of frustration that I hadn’t let Patty and Caitlin see me when I was so sick. I think they were just so glad to see me looking so well. Patty asked if I was going to slow down a bit in my relentless pursuit of growing AMF and training to become a physician after my near-death experience (which is how we were beginning to speak of it). I started to explain that I thought I would indeed probably slow down and not work such long hours. But Bernie wasn’t so sure. He had friends, he explained, who’d had heart attacks and strokes and cancer diagnoses. They all said they’d change, but not one of them really did. He hoped I’d be different. I would soon join their ranks—slowing down wasn’t in my future.

  That’s not to say, however, that I didn’t learn another lesson from that first brush with death. Perhaps because I’d had a group of caring people gather around my bedside, I became conscious of whom they had seen before them and why they were there; I saw in sharp focus that I needed to live every day the way I’d want the people I love to remember me when they’re crowded around me on my last day. My mother did this. Her demeanor was a living legacy: generous, wise, and warm. Not just on good days, and not as she was presented with her own mortality. Always.

  With clarity I now saw that the showdown with Patty and Caitlin in the hospital lobby was a result of my not making Caitlin a priority before we broke up, not fighting for her after we were apart, and feeling terrible that I’d not done so. With a new lease on life—and for however long it lasted—I decided I didn’t want to be remembered as a person “too busy” for things, even if what I’d been busy doing felt important. If I was given the chance, I wanted to be remembered as a great partner, an amazing father, a generous friend, and a disease curer. I vowed I would make time for the people I loved. I would not wait.

  Nor would I wait to figure out what I’d just been through. I wasn’t at all satisfied with just “becoming better” in a mysterious way after a mysterious illness. I wanted answers.

  I began by requesting and reviewing my own medical records dating back to childhood. This wasn’t just my morbid curiosity. I knew that a disease that seemingly went away on its own would have no issue with coming back. For all I knew, it was just temporarily dormant. I needed to figure it out before it woke back up. I had been a patient, and I had been a doctor in training, and I liked being the latter a whole lot more.

  So, I began my work. I received over three thousand pages of records and reconstructed my own medical history. I started working on my differential diagnosis, or a list of possible diagnoses that could be causing my particular set of symptoms or problems. Then, I applied the available data to evaluate each diagnosis in turn to start narrowing down the possibilities. This was an exercise that I had done frequently for other patients on my clinical rotations just months before. Now, and for more than twelve hours a day, I scanned medical records and papers to identify patterns that might have any relevance to what I’d just gone through.

  My focus was laser-like, but I did have one very welcome (and frequent) distraction: bathroom breaks. My kidneys and liver, which hadn’t worked for two months, finally returned to full function again. I was peeing out all of the fluid that had accumulated in my body. I urinated 42 pounds of fluid in fourteen days as my fluid-filled belly and edema-swollen legs shrank. Suddenly I weighed 165 pounds, 50 less than when I was admitted to the hospital at Penn, and a weight I don’t think I’d seen since junior high school. But I’d take it. It was amazing. I was urinating myself back to normal.

  And then I started getting tired again.

  THE IMMUNE SYSTEM is staggeringly complex.

  That means that attempts to describe what it does, and how it does what it does, quickly run into one challenge above all: the relative conceptual poverty of any available metaphors. You’ll have encountered this challenge if you recall your typical high school–level biology class. Many earnest textbook writers have tried to describe the immune system in lay terms. Is it like an alarm system? Or is it like a power grid, or first responders, or an army? That last one is perhaps the most appropriate, and I’ve heard it used countless times: Our bodies are fortresses, and our white blood cells include many specialized soldiers and hunter-killers that seek out invading pathogens and cancers. The rest fills itself out. There are lines of communication. There are battles. There are winners and losers.

  To be honest, the military imagery may be a bit overdramatic, but it is pretty accurate based on what we know.

  Consider: Our immune cells
have receptors on their surfaces that can detect whether something is a friend or a foe. That’s a basic component of the whole apparatus, and one that we do understand fairly well. Alas, as in any good arms race, many adversary cells have evolved ways to mask their outsiderness, or even mimic the appearance of healthy cells. But when that mimicry fails, when our immune cells successfully detect an enemy, they release molecules called cytokines that trigger an array of initiatives:

  Alerting other immune cells to what they’ve detected

  Notifying specialized killer immune cells that they should go into attack mode

  Attracting other cells into the appropriate area

  And, finally, coordinating when to stop the barrage.

  If any aspect of those immune responses goes wrong—say a false alert is sounded or the specialized killer cells go after the wrong target or the signal to stop isn’t received—your healthy cells will almost certainly suffer. It takes only one misstep. But then consider that each of the four simplified steps I just listed is actually made up of thousands of smaller steps and connections, each in itself a complex interplay among thousands of genes and hundreds of molecules that must bind to specific cell receptors and in turn trigger cellular procedures that lead to the production of additional molecules. It’s triggers all the way down. And then there are triggers all the way back up to feed back to the triggers that they should continue or stop. And these steps are all occurring simultaneously in billions of cells that represent hundreds of different specialized types of immune cells. To say there is a lot going on is an understatement.

  And it happens all day, every day, all over your body.

  Just one error in the genetic code or one mistake in an immune response can be deadly, because its effect multiplies as it cascades throughout the system.

  Militaries make mistakes all the time. Supplies are lost, equipment degrades, and, in tragic scenarios, armies can even accidentally fire on themselves.

  But imagine if friendly fire triggered more friendly fire.

  Which triggered more friendly fire.

  Which triggered more friendly fire.

  And all this assumes that we know everything there is to know about the interactions and functions of the immune system. We don’t.

  * * *

  —

  After getting discharged from Rex, I split my time between my dad’s house and my sister Gena’s. It was easier on them both that way. I was sensitive about putting all of my responsibilities on just one person, even though I’m positive either would have been happy to host and help me full-time.

  Three weeks later, I was staying with Gena. I’d been feeling extra-tired all day, but I was happy to chalk it up to continued recovery; it made sense that my body would take a while to bounce back fully from being at death’s door. But that night before I went to bed, I noticed that some of the blood moles on my chest and arms that had shrunk away as I recovered were now growing again. Red and livid against my pale skin. Worse than that: New ones had appeared.

  My fatigue overwhelmed my mounting anxiety, and I fell asleep. Fourteen hours later, Gena decided it was time to wake me up. I was still exhausted.

  Then, with horrible punctuality, the nausea and abdominal pain returned, and the fluid shortly after. I got some dutiful blood work done to confirm what we already knew. This strange and aggressive thing was back.

  After four weeks out, I was back in the hospital on November 1, 2010. At Rex, they administered high-dose corticosteroids again, and again there seemed to be no effect from what almost always makes patients feel better and sometimes improves their mysterious ailments.

  There was a new twist this time though. My doctor was a familiar face. In fact, I had once wanted to be him. Just a few months before, he’d met with me when I wanted to discuss my career. I wanted to learn from him. He’d been my mom’s oncologist.

  Like the team of doctors before him, he looked at the tests and my symptoms and came to the conclusion that whatever I had wasn’t lymphoma. A few months ago, I would have taken his word as the gospel truth, but by this point I’d started to develop an ornery streak. Even though my mystery illness had interrupted my medical education, it had somehow given me a kind of candidness I’d lacked when I was healthy and whole. Perhaps it was just the mentality of a man walking the plank: There was nothing to lose now.

  So when my mom’s oncologist told me I didn’t have lymphoma, I pushed back. I told him about the papers I had found from the 1970s and ’80s suggesting that the eruption of these blood moles might indeed be a sign of an underlying malignancy, that that malignancy might indeed be lymphoma. My lymph nodes were enlarged, and I had all of the symptoms. But no one had done the definitive test for lymphoma—a lymph node biopsy. I laid out my case for the surgery as though I were an experienced internist. He responded as though I were an intern.

  “You need to be the patient. Let me be the doctor,” he said, sternly, and a bit harshly, but not incorrectly.

  I was being scolded. And I would normally not press the matter further in a situation like this, especially not with this man I had revered. But I stewed. I thought: I’ve been the patient for the last eleven weeks, and no one can figure this shit out. The fact that no one knew anything was hard to take when I first got sick; it was becoming unacceptable now that I was relapsing.

  “Well, what is it?” I nearly screamed.

  “I don’t know, but I’ll eat my shoe if it’s lymphoma,” he said.

  My family was frustrated too. We’d all been deferring to physicians for weeks and had little to show for it except for a consensus that I didn’t have lymphoma despite the fact that the definitive test hadn’t been done. I guess process of elimination had to start somewhere, but you need the test result to actually rule it out. I didn’t know how much longer we had to go through the list. My blood work was showing that my liver, kidneys, and bone marrow were beginning to fail again.

  The corticosteroids that had likely saved my life last time still weren’t working this time around. So, finally, after several more inconclusive tests, my doctor ordered a lymph node biopsy. It was a relief. It’s not that I was convinced I had lymphoma; it’s just that it was the most likely conclusion based on the differential diagnosis exercise I’d been going through. I was tired of guesses and supposition. I wanted the hard stuff, I wanted to see results. I was tired of trusting doctors’ opinions and hoping for them to find answers. As a physician in training and the son of a physician, I knew that we were not infallible or all knowing. Not even close.

  The results came back via fax on a Friday morning. My doctor was out of town.

  His nurse-practitioner came into my room to deliver the diagnosis, the test results literally in hand. It happened to be one of the first times in almost three months of being hospitalized that I was alone in my room. I have seen good news delivered, and I have seen bad news delivered. I have seen nurses and doctors with good poker faces and with bad. She did not have a good poker face. She was clearly giddy.

  “Good news. It’s not lymphoma! You have…” And here she read from the fax. “You have HHV-8-negative, idiopathic multicentric Castleman disease. I’ve never heard of it, so I can’t answer any questions about it, but it’s not lymphoma! Your doctor can tell you more when he returns next week.” She smiled and walked out of the room.

  My oncologist would not have to eat his shoe. It really, truly wasn’t lymphoma. Even better—I wasn’t suffering from some mystery illness anymore. It had a name—I vaguely remembered hearing it once before in my immunology course in medical school, and that must mean it had a history, and clinical trials, and treatments…I was excited just for the prospect of being able to know this thing.

  So, like anyone else, I googled it. Right then and there on my iPhone from my hospital bed.

  I scrolled down through the Wikipedia page until I
could find some hard data. And there it was, the only study cited, from 1996: Patients with multicentric Castleman disease survive for an average of one year after diagnosis and only one in eight survive for more than two years. They die from multiple system organ failure, MSOF. Which meant, in fact, that this was significantly worse than lymphoma—which we’d all been thinking was the worst-case scenario. It was an incredible moment. A psychological perfect storm. I’d rationalized my morbid insistence on a lymph node biopsy with the hedge that if I was wrong about the possibility of lymphoma, I’d at least be wrong in the right direction. I thought I’d have been only happy to be wrong. I didn’t even consider that there might have been something worse. I’d been outflanked.

  Alone in that room, I cried uncontrollably. For a second time, I knew two things suddenly and simultaneously: I was going to die, and I would never have a future with Caitlin.

  As it turned out, besides the survival rate, what was known about idiopathic multicentric Castleman disease at that time was that—for an unknown cause—enlarged lymph nodes produce substances that lead to vital organ failure and death. To return to the military analogy, this isn’t just friendly fire begetting more friendly fire. It’s like the military dropping a nuclear bomb on every major city it was supposed to be defending. I explained it to my sisters and dad after they returned to my room. My grandparents and aunts arrived from Trinidad a few days later. We tried to be positive. At least now we had a name to curse. Mostly, we cried. And we prayed.

  For weeks, I had wanted to uncloak my adversary, so that I could size it up, come up with a game plan, and relentlessly fight it. But little was known about this adversary beyond its name, so I would need to find a physician with expertise and the requisite tools to give me a fighting chance.