Chasing My Cure Read online

  I also became fatalistic. When a new computer that I had just purchased arrived, I returned it and bought a computer with a larger monitor despite the fact that it cost a lot more. I rationalized the expense to myself and my friends by explaining that I deserved the larger screen and didn’t need to save money—since I wasn’t going to live much longer. Again, my friends didn’t know what to say. I wasn’t even a garden-variety hypochondriac; they found this strangely dramatic new side of me unnerving.

  But the honeymoon phase with death—feeling vaguely bad, flirting with fatalistic proclamations about it, and splurging on larger monitors—was short. Soon, sharp abdominal pain and nausea began to overtake me. The nausea made me skip meals. The abdominal pain would force me to lie in the fetal position or bend over to almost 90 degrees whenever I had to stand. I wouldn’t allow myself to do either of those things when I was around patients, so my work interactions became miserable and terrifying. The pain also radiated to my spine, so I asked Grant to try to crack my back during a break between patient visits, hoping that the pain could be relieved with such a simple maneuver. It didn’t help—it wasn’t my back.

  Four days before my end-of-rotation exam, I woke up to find my sheets were drenched in sweat. I stumbled to the sink to get some water and was startled when I detected lumps on both sides of my neck. As I looked at myself in the mirror, it was obvious that I was feeling enlarged lymph nodes, just like those on a young man with lymphoma I had recently cared for. My mind went no further than that. If my hands had been feeling the same lumps on anyone else, I’d already be deep into one of a few diagnostic branching paths: infection? mono? lupus? cancer? But not now, not for myself. I resisted becoming my own patient as long as I could.

  The next morning, I noticed that some tiny red bumps on my arms and chest had gotten larger since just a few days before. They looked like balls of blood vessels on my skin. I remember having seen something similar once before, back in my dermatology rotation. They were called blood moles, or cherry hemangiomas, or senile hemangiomas. It’s totally normal for them to appear on the skin as we age—hence the name senile—but I had never heard of them appearing suddenly like this and growing so rapidly, and on an otherwise healthy(ish) young man.

  The pileup of symptoms had become impossible to ignore. But I just needed to make it through the end of my rotation and the exam, only a few more days, and then—I told myself—I could get checked out. I comforted myself with the idea that it was probably just a gallbladder infection causing the stabbing abdominal pain, nausea, and flu-like symptoms. Of course, a gallbladder infection wouldn’t explain the blood moles, so, like everyone else in the world, I turned to Google. And, predictably, the results were not comforting. I was directed to a couple of papers from the 1970s and ’80s suggesting that the eruption of blood moles could be a sign of cancer. I immediately closed the browser on my big, brand-new computer.

  A day before the exam, I slammed two energy drinks as I struggled to make it through morning clinic. My body temperature was swinging between fevers and chills. A thermometer in one of the patient rooms detected a fever of 101.5, and then my temperature was 95 degrees just a few minutes later. My resident could see that I didn’t look well (although anyone could have picked up on that), so she told me to go home and get some rest, and I dutifully left the clinic—and went to the library to study. I still had my eyes on the prize; and I was still completely deluded. I didn’t make it past the first page of my notes before I curled up on the floor. The carpet felt like it was only a millimeter thick above rock-hard cement. I didn’t care. Four hours later, I woke up and it was already time to drive back to Philadelphia so that Grant and I could take the exam the next morning. To the great benefit of all the drivers on I-476 that night, Grant drove.

  I think I had some minor fantasy that test day would come and my body would give me a break for a few hours, but that remained a fantasy. The fact that I was even able to show up that day is a credit to my inveterate test taking (I was always the kid with the multiple, precisely sharpened number 2 pencils on test day, paging through my notes for the hundredth and final time), but when I got there this time, it was too much even for me. My fever was spiking, and the pain in my abdomen was piercing. My body was drenched from head to toe in sweat. And above all—I was so, so tired. Beyond tired. I had almost nothing left.

  Not ideal conditions for an exam. I struggled to comprehend the questions on the page in front of me. My mind bobbed up and down on waves of pain. I couldn’t focus. For what seemed like an eternity, I realized that I had been weighing the virtues of answering A versus C—but I had no memory of what the actual question was.

  Then I was hit again with that crystal-clear knowledge of my fate. It didn’t matter if I marked A or C, because, I realized, I was about to die.

  After the exam, I stumbled down the hall of that very hospital to the emergency room. A quick look at me told the triage nurse that I needed help. I was hurried into a battery of tests. An ultrasound revealed that my gallbladder was fine, but my blood tests were abnormal, to put it mildly—my liver function, kidney function, and blood counts were, I was told, “all off.” The ER doctor felt the enlarged lymph nodes in my neck and announced he was ordering a chest, abdomen, and pelvis CT scan and admitting me for further evaluation.

  Suddenly I was wearing a hospital gown, getting wheeled past medical students, residents, and nurses on the same floor of the same hospital I’d worked on. I’d been with a patient who was in the same bed I found myself in, and I’d stood where my doctor now stood, and I was feeling the same fear and uncertainty that I assume my patient had felt. If nothing else, I was getting an education in what a patient really needs in terms of a doctor’s bedside manner. But I wasn’t looking for silver linings or life lessons that day.

  In between the scan and getting the results, I realized I wanted to call my family, but I also wanted to wait until I had more information to share. I hated the idea of making anyone join me in that halfway space of knowing something was wrong but not knowing what that something was. I knew they’d be so worried about me, so I decided to hold off.

  The next morning, the attending physician informed me that the CT scan showed enlarged lymph nodes throughout my body and that my blood tests had gotten worse from the day before. He suspected I had lymphoma or another blood-related cancer, but wanted to perform additional tests to see if a virus, though highly unlikely, could be responsible for my symptoms. The doctor was prompt and professional, but I knew what he was saying. All signs were pointing toward aggressive lymphoma. He knew it, and I did too.

  This was not the “more information” I was hoping to receive and share with my family.

  The cases of lymphoma on my medical school exams almost always began with something like “a previously healthy twenty-five-year-old male presenting with flu-like symptoms, enlarged lymph nodes, and abnormal blood counts.” That was me, and the doctors told me as much, but they still weren’t certain. After they left my room, I walked out into the hallway. Wearing a hospital gown instead of my usual short white coat, I logged on to one of the computers mounted on the wall and pulled up my CT scan. I reviewed the images over and over, between bouts of pain that folded me in half. Each scan showed the same thing. My body was riddled with enlarged lymph nodes. Fluid had accumulated around my heart, in my lungs, and in my abdomen. With symptoms this pronounced, and developing this quickly, I knew that I had only a few weeks left to live, whether it was lymphoma or not.

  Just two weeks ago, my totally nonscientific but deep-seated feeling that I was dying had moved me to upgrade my computer. This time death wasn’t a feeling; it was a revelation, and a photographic fact. Its traces were gathering inside my body already, and I could see them faithfully represented in black and white in front of me. I immediately thought of Caitlin. I wanted to call her. But I couldn’t. It was six months past our breakup. She had reached out to me once sin
ce then, but I’d pushed her away, still hurt and still foolishly thinking that we had all the time in the world for our relationship to work out if and when it was meant to be. I’d been waiting for that timing to become more obvious. My unexpected illness forced me to slow down for the first time since our breakup and recognize the feelings I still had for her.

  Then I started to count. In the days and weeks I had left—was there time to get back together? Was there time to be in love again? And, an especially manic thought that I can now see speaks to my underlying desire to simply have a future: Was there time to have a child together?

  Tears streamed down my face.

  The next person I thought of was my best friend, Ben. Ben had been my best friend—more like a brother really—from the first day of high school. A constant supportive presence, Ben continued to be there for me, deep into challenges that surpassed route running and Latin homework. He was one of the friends I had called a couple weeks before to tell about the computer. Now I tried to compose myself before calling him again. But as soon as I started to speak, I burst into tears. “Remember I told you that I thought I was sick, but didn’t know what was going on? The doctors think it’s lymphoma, and the scans look bad.” I struggled to catch my breath. “I don’t think I have much time left.”

  My limited composure quickly decomposed. Between sobs, I told him how sorry I was that I wouldn’t be around to be the best man at his hypothetical wedding or to be his future children’s godfather, two things that we had promised to each other years before. Ben simply responded that he’d get in his car and be there as soon as he could. And he did, driving seven hours through the night.

  Then I called my sisters and dad. Sadly, they knew all too well what to do. They had received this kind of news before. They stopped everything—my dad canceled all surgeries and clinics, my sisters closed up shop—and they flew in the next day. After those calls I was done. I left Caitlin alone. I put away thoughts of reunions and our future.

  My blood tests and symptoms continued to worsen, but my outlook only got more confused. The following day, a new set of doctors told me that they didn’t think it was lymphoma after all, but that they still didn’t know what it was. My family was with me, and we were relieved by the new report, but now I was back to living in that gray zone of uncertainty. I hated being the patient. I wanted to be at the controls. I wanted to find out what was wrong and fix it, immediately.

  The doctors ordered a battery of additional tests and decided to discharge me forty-eight hours after I’d stumbled into the ER fresh from my exam. They instructed my family to keep a close eye on me and bring me back to the hospital should anything worsen. Back at my apartment, I slept for almost twenty-four hours, with only brief periods of waking, when I guzzled Gatorade to try to quench my insatiable thirst. But I never peed. My father and sisters stayed on couches in my apartment along with Ben, Ron, and Grant to monitor me. We were all scared.

  The next morning my legs and belly were swollen with fluid. The water retention was a symptom I’d seen before in patients who were suffering from dysfunction of the liver, kidneys, or heart, but I had never seen it come on so quickly. As I struggled to get out of bed, crushing chest pain hit me like I’d been shot, and I called for my dad. He rushed me back to the ER. An EKG revealed what we already knew: serious cardiac abnormalities. Doctors and nurses rushed in and out of my room, administering several medications and running a series of new tests. Pinned in the middle of a whirlwind of activity, I experienced a strange moment of peace. Like the strange, slow quiet between the first shivering of a Jenga tower and its crashing fall. I wasn’t going anywhere anytime soon. Then suddenly came the most intense pain yet, boring into my chest, and a bright flash filled my field of vision. And I was out.

  I woke up almost twenty-four hours later in the intensive care unit. I couldn’t see anything out of my left eye. I squinted and labored to bring my hands to my face to rub my eyes, but still nothing from my left eye. A retinal hemorrhage, they told me later. Ophthalmologists came, and treatments began.

  But my sight was the least of my worries.

  Nearly every other part of my body—each of them more critical to my survival than my eyes—was beginning to collapse. First my liver, then my kidneys, then my bone marrow, and then my heart. Laconically called MSOF on the other side of the patient-doctor divide, I knew this was short for “multiple system organ failure.” I’d written it down many times on patient charts without a lick of understanding about what it actually felt like.

  More tests greeted me when I woke up. Repeated blood tests, tests for inflammation and immune activation all came back abnormal. No one knew what was causing this. Soon, I lost the ability to sit up or stand and struggled to move beyond just straightening or bending my arm for a blood draw or new IV. Consciousness came and went. During the fleeting moments that I was awake, I struggled to think critically and to speak. My words were slow to form, and they seemed to get completely lost on the way from my brain to my mouth. There were two things that I ruminated about during these periods of consciousness. I wondered what I had done to deserve this kind of punishment. Had I done something or failed to do something that demanded my endless suffering in return? Had I prayed too little? Had I questioned too much? I was also fixated on the blood moles on my body, asking anyone who walked into the room about them. Doctors, nurses, food deliverers, trash collectors. I just couldn’t stop obsessing about them.

  A hematology fellow was visiting me, and I seized the opportunity to bug him. With my eyes closed, I struggled to summon the strength to lift my hand up to point to a blood mole on my neck. “What…do…they…mean?” This was a question that I’d apparently already asked several times before. Clearly frustrated, the hematology fellow pleaded with me, “David, your liver, your kidneys, your heart, your lungs, and your bone marrow aren’t working properly, and we’re trying our best to figure those really important things out. Please, forget about the blood moles.”

  I didn’t. Perhaps fixating on them could keep me from thinking about what I was pretty sure was imminent death. Or maybe they gave me something simple enough that I could focus on and feel like I was assisting in my care. My own health was giving me a technical reprieve from medicine, but figuring out what these blood moles meant would help me get back in the proverbial saddle.

  But not yet.

  Within two weeks, I’d radically transformed. I came into the hospital weighing 215 pounds and in obsessively athletic shape. Then, I gained 90 pounds of fluid weight, and I lost 50 pounds of muscle. My failing liver wasn’t producing a key factor to prevent fluid from leaking out of my blood vessels, so fluid rushed into my abdomen, legs, arms, and the sacs around my heart, lungs, and liver. My doctors administered liters of IV fluids to try to maintain enough blood in my vessels for my heart to pump to my vital organs, but it continued to leak out, as a substance called extracellular fluid—basically everything in blood except the blood cells themselves. Water and protein, mostly. The fluid caused the sacs around my organs to stretch beyond capacity. I caught myself screaming often. I was given high doses of opioid painkillers, but they didn’t help. The opioids only made my thinking blurrier and caused me to hallucinate—I saw teddy bear–looking creatures walking on the walls of my room—a bizarre nightmare when you are simultaneously experiencing knifing pains throughout your body.

  Trauma surgeons debated opening up my abdomen to search for a cause for my symptoms and a source of the abdominal pain, but my blood counts were too low to safely operate. Fortunately, breaking bones on the football field had heightened my pain threshold and helped me to breathe through some of the pain. And the muscle mass I had gained over years of high-intensity training served as a vital protein source, which helped to keep me alive while my immune system was ravaging so much of my body. There was a flurry of activity after my father rushed back with me to the ER and after I passed out for twenty-four hours, but t
here was little to show for it. As my disease ran rampant, countless tests—bone marrow biopsies, PET scans, MRIs, a renal arteriogram, a transjugular liver biopsy—failed to identify what exactly was killing me.

  I LAY MOTIONLESS in bed for weeks.

  It was often dark.

  Medication helped the sight to return in my left eye, but bright lights were difficult for my fragile vision to endure, so we kept the lights off in my room. Nausea was my constant companion. I threw up every small bite I tried to eat over those first few weeks. I continued to drift in and out of consciousness. Even my brain was under attack, and between lucid moments I could feel it grinding to a halt. In the limbo between conscious and unconscious states, it could take me minutes to respond even to simple yes-or-no questions.

  I understood that whatever I was suffering from was mysterious, but I also began to notice that there were other reasons my diagnosis was proving elusive. I got glimpses of the situation when my doctors were in my room and I was partially alert. The nephrologists and rheumatologists thought it was lymphoma. Oncologists thought it was an infectious disease. Infectious disease specialists thought the issue was rheumatologic. The critical care team didn’t know what it was.

  As my medical school friends scoured through textbooks and medical journals to try to find answers, the refrain of my doctors became “No one knows.”

  Meanwhile, my family knew exactly what I needed. My dad and my sisters (Gena was now three months pregnant) stayed by my side even when that meant defying instructions to keep out of my room in case some dangerous, exotic virus was the source of my ailments. I believe that their encouragement and presence saved my life. This inexplicable attack caught me flat-footed and unprepared, and in those first days and weeks, at times, I was ready to give up. Those words—give up—don’t quite translate across the barrier between the ailing and the well, and, even now, I’ve lost some touch with what it once meant in the moment, mentally, to give in to death. But I remember doing so. Death seemed to promise me peace and an end to my suffering, and that was alluring at a time when every breath was painful. The harder I pushed to breathe sufficiently deeply, the more knifelike pain I felt. So I slowed my breathing and fought less for each breath. I thought about my patient George and how he was ready to give up before he reconnected with his daughter. Likewise, it was my family, with whatever special sensitivity only families can have, who must have realized I was slipping away, and it was their urging that brought me back. “Just breathe,” I remember hearing. That was enough. I snapped out of my trance and began fighting for each breath again.