Between Two Kingdoms

by Suleika Jaouad

  The goal was to reach Day 100, or “Examination Day,” the first major benchmark for evaluating a patient’s recovery from the transplant. I tried to keep track of time from my bed, where I spent the days and nights lying at a forty-five-degree angle to prevent my lungs from filling up with fluid, but the hours melted together. My IV machine hung over my bed like an awning, carrying my daily intake of fluids, immunosuppressants, antinausea medications, three different kinds of antibiotics, and a round-the-clock morphine drip. The ceiling vent emitted the hiss of cold air, a constant, anxiety-inducing audio track.

  I spent nearly two weeks this way, without any major incident. Then, in the early hours of Day 14, someone began to scream, a deep, steady wail, so loud it woke me up. The room was dark. An alarm was sounding. Tubes were wrapped around me like snakes. My chest was slick. I felt something wet spurting from below my collarbone, dribbling down my sides. A moment later, the door swung open and a nurse’s face appeared over me. She squeezed my shoulder and it was only then that I realized the scream was coming from me. “Holy shit,” she blurted, as she peered down at me in horror. I’d been having a nightmare: dozens of insects scurrying over me and gnawing at my skin. In a drugged panic, I’d ripped my catheter clean out of my chest.

  * * *

  —

  There’s a tipping point, a special kind of claustrophobia reserved for long hospitalizations, that sets in around week two of being locked in a room. Time starts to elongate; space falls apart. You stare at the ceiling for so many hours that you begin to see shapes and patterns, entire universes appearing in the cracks and crevices of the popcorn plaster. The walls begin to close in around you. When the pitter-patter of rain against the window wakes you from a medicated haze, you yearn for it, like nothing you’ve yearned for before—to be outdoors, to feel the rain drizzling down the back of your neck, to tilt your head up and taste the sky on your tongue. You try to open the windows, though you know full well that they are sealed shut. Your desperation begins to border on madness.

  Most people don’t know what it’s like to live this way, locked in a tiny white room with no release date in sight, unless perhaps they’ve been incarcerated. While in the transplant unit I was often reminded of Lil’ GQ, the death row inmate who had written to me a few weeks earlier. I wondered what he did to pass all that time in solitary confinement. I wondered how—if—he’d been able to maintain his sanity. Inspired in part by him, I began drafting a column in which I reflected on what I termed my “incanceration”:

  To a cancer patient, the lexicon of the prisoner seems to scream out from everywhere. Your movement is monitored. Decisions as basic as what and when to eat require pre-approval from a higher order. Not to mention that chemotherapy feels like a semilethal punishment. The medical staff plays the judge. At any moment, your doctor can issue a sentence: probation, house arrest, extended time in “jail” and, for some, even death row. I’ve never had to appear in court, but I imagine the adrenaline pumps the way it does before a doctor reads your biopsy results.

  Lil’ GQ wasn’t the only stranger whose words kept me company during those long, delirious days in the transplant unit. Each morning, I checked my in-box to find it filled with dozens of notes from readers of “Life, Interrupted.” Though I wasn’t allowed to leave my hospital room, writing had given me a portal through which I could travel across time, space, continents.

  I heard from all kinds of people, many of whom had been sick themselves. I heard from a teenage girl in Florida named Unique, who was undergoing treatment for liver cancer and sent me a message composed largely of emojis. I heard from a retired art historian in Ohio named Howard, who’d lived with a mysterious, chronic autoimmune condition for most of his life. You are a young woman, I am an old man. You are looking ahead, I am looking back. It is likely that we have only our mortality in common, he wrote. Meaning is not found in the material realm—dinner, jazz, cocktails, conversation or whatever. Meaning is what’s left when everything else is stripped away. I heard from many who had never been sick a day in their life, but who related to the broader notion of having their life “interrupted.” From the wife of a senator in the Midwest who was struggling with infertility. From a young man with bipolar disorder who had recently become homeless and was living out of his car in Boston. From Katherine, a high school teacher in California, who was mourning the death of her son.

  I should have felt lonelier in the transplant unit than ever before, but these strangers and their stories quickly became my conduits to the outside world. I relished the letters I received, though I rarely had the energy to respond. When I did, my first priority was to write back to the young adults with cancer—they were my people, after all. One was Johnny, a nineteen-year-old boy from Michigan who was also being treated at Sloan Kettering for leukemia. He’d read my column and sent me a message on Twitter, and I replied right away. It was the first time I’d had the opportunity to talk with a young person who shared my diagnosis. Both of us were on “isolation” status, sequestered in our respective Bubbles on different floors of the same hospital, and we were forbidden from meeting face-to-face. We chatted online instead, our conversations drifting from the silly to the serious, often in the span of one long run-on sentence. We were both bombed out of our minds on morphine, which leveled any expectation of punctuation or spelling or grammar—a relief.

  Johnny: What’s your fav thing on the hospital menu?

  Me: The QUESADILLAS.

  Johnny: YES, had a quesadilla yesterday and was in heaven.

  Me: Are u inpatient?

  Johnny: Just got moved to the pediatric floor…I got the middle bed and the other guy has to walk past me to use the bathroom plus the view is totally not as good

  Johnny: how are you feeling post bmt [bone marrow transplant]

  Me: grumpy & irritated. the nurses come in to weigh me everyday at 5 am.

  Johnny: I cant wait to feel life cancer free.

  Me: same. do you know any spells to speed up time?

  My heart ached for Johnny. Our shared experience was brutal, but between us existed a weird sort of beauty: There we were, two complete strangers, arms extending from our screens, wrapping each other in an intimate embrace.

  * * *

  —

  Nearly three weeks after my transplant—or Day Plus 20, as the doctors and nurses referred to it—Will stood with his back to me, looking out the window of my hospital room, describing the morning scene to me as I lay in bed. Fractals of sunshine across the East River. The lip of a bridge poking out over blackened tenement buildings. Yellow taxis jerking down York Avenue like Monopoly pieces. Tiny hustlers in suits commuting to work. I wanted to join him, but I was too tired to get up and drag my IV pole the five feet to where he stood. I knew he’d be on his way to the office in a few minutes, but the drugs were making my eyelids heavy. When I woke up next, he was already gone.

  Such sleep was a kind of refuge, a numbing to the side effects of the transplant. What little hair on my body that had grown back during the clinical trial was falling out again, leaving my skin raw and silky, almost larval. My weight had plummeted and my already skeletal torso shrank, but my cheeks had grown round and swollen from all the steroids and liquids being pumped into my system. Moon face, cancer patients call this. Shrunken and stretched in all the wrong places, broken blood vessels blooming like watercolor paint across the surface of my skin, I felt hideous—less moon face, more monster.

  My immune system was completely wiped out. I was waiting for Adam’s healthy stem cells to engraft, but it was taking longer than expected. Adam was finishing his last few weeks of college and he should have been focusing on finals and parties and graduation. But, like my parents and everyone who entered this sterile Bubble, he concealed his worry behind a mask.

  Later that afternoon, I woke up to the sound of my parents’ voices. As I twisted my head to say hello
to them, I felt something inside my throat rip and detach like Velcro. I lurched forward, my mouth filling with blood, as I heaved up a hideous mass of flesh into the plastic bucket next to my bed.

  “What happened?” my parents cried out in alarm, calling for the nurse.

  “Your daughter just vomited up the lining of her esophagus,” the nurse explained in a business-as-usual voice, calmly surveying the mess.

  The chemo was burning away the mucous membranes that lined my mouth, throat, and gastrointestinal tract, which made it impossible to talk or eat anything other than ice chips. Hour after hour I vomited chunks of charred flesh into the bucket next to my bed. The pain and antinausea drugs provided some relief, but I spent much of my waking hours pretending to be a statue, trying to sit still in the hope that it might soothe my roiling stomach. When the doctors arrived, encircling my bed in a protective ring of yellow medical gowns, they hooked me up to a feeding tube, a direct line to a bag of greenish-yellow liquid that looked like Mountain Dew.

  That evening, Will returned. He had skipped a work dinner to spend some time with me. I wanted to ask him all about his day. Did he do anything interesting? Did he have lunch in the park? Any office gossip? But we were interrupted by the nurse, who was hanging a new bag of medication. It would make me drowsy soon. Will offered to read to me, or to set up the Scrabble board, even if I was only up for a few turns. I couldn’t remember the last time we’d played.

  Will’s schedule was full with his job and the basketball and soccer leagues he’d joined the week before I entered the transplant unit. On most nights, by the time he got to the hospital, I was already fast asleep. I knew he needed an outlet to cope with the stress of our situation—all caregivers do—but I couldn’t understand why he was so busy all of a sudden. Increasingly, it felt as if we were peering at each other through the opposite ends of a telescope.

  My teeth chattered as Will draped me in a heated blanket. He poured me some water in a Dixie cup. I wet my tongue and let the cold liquid eddy around my mouth—a momentary tonic for my swollen cheeks—before I spat it out. I didn’t want to resent the hand holding the water jug. It was my body I was at war with. There was so much we needed to talk about, but I suddenly felt overwhelmed by a deep exhaustion. My eyelids felt heavy again. Will sat next to my bed. As I drifted off, we held hands through blue latex gloves.

  16

  HOPE LODGE

  ROLLING OUT OF the hospital onto York Avenue in a wheelchair, I lifted my face up to the sun, letting it warm my sallow skin. It was a balmy May afternoon, but I was swaddled in a wool hat and a ski jacket, and my teeth, as usual, were chattering. The wheelchair clogged the busy sidewalk outside the hospital’s main entrance, as I waited while my mother and Will hailed a taxi. Pedestrians stepped aside, inadvertent spectators to our little procession. My feet touched the sidewalk briefly as I got into the waiting cab.

  It had been a little more than a month since I’d undergone the transplant. The doctors had told me that though my immune system was still nonexistent, preliminary tests showed that Adam’s cells were finally beginning to engraft in my bone marrow. I was showing signs of progress: In the last few days I had transitioned from a feeding tube to being able to keep down a couple of saltine crackers, I was able to walk around—slowly—but without assistance for the most part, and my blood counts were creeping in the right direction. It would be several more weeks before we knew if the transplant had worked—Day 100 still loomed ahead—but for now, I was focused on a smaller victory: discharge.

  The doctors were sending me to the Hope Lodge, a kind of halfway house for cancer patients in Midtown Manhattan, where I would live for the next three months. It was a gray concrete building with sixty rooms down the street from a Jack’s 99-Cent Store and one block from Penn Station. For the foreseeable future, I would need to wear gloves and a mask everywhere I went. No subways, no public places, no germs, my doctors cautioned. I rolled from the taxi to the entrance, the sidewalk crowded with pedestrians. I pulled my face mask tighter over my mouth.

  I was grateful that a place like the Hope Lodge existed, and grateful for the generosity of the strangers who had raised the money to open it, but in an ideal world, I wouldn’t have had to live there at all. In an ideal world, I would’ve had my own place. I would have moved into my mother’s first apartment in the East Village, which she had held on to for all those years, renting it until recently to long-term tenants. But my immune system was still too fragile to live in a ground-floor apartment of a prewar building right next to the dumpsters. More than that, it was too small for me to live there with both Will and my mother. It had become clear soon after my transplant that being a caregiver to a recent transplant patient was a round-the-clock job, one that my mother and Will planned to share. So we’d decided that I would stay at the Hope Lodge and that they could use the apartment as needed, as a sort of caregiver outpost. It was the best plan we could come up with given the circumstances.

  It fell through the moment we arrived at the Hope Lodge. Inside, a receptionist greeted us and handed over a room key and a packet of information. Then Will and my mother began following me into the elevator to go upstairs to the room, only to have the receptionist call after us to say that only one caregiver at a time was allowed to accompany a patient on the residential floors—no exceptions. We tried to push back, saying that such rigid protocols didn’t take into account the demands and the unpredictability of illness. But the rules were the rules, and it became clear that my hope for how Will and my mother would share caregiving duties—fluidly and in tandem, like a family—wasn’t possible. There would be no spontaneity, no room for the two of them to support me together or to support each other. I would have to constantly choose between one and the other.

  I was torn. I needed the kind of help you could only really ask for from a parent—but I felt like Will and I were drifting, and I didn’t want to be apart. Since day one of my diagnosis, my greatest fear other than dying had been losing him, and now that I was sicker than ever, my instinct was to hold him close. So I suggested that Will live with me at the Hope Lodge, and my mother visit during the day while he was at work. At the time, it seemed like a good compromise.

  * * *

  —

  The room Will and I shared at the Hope Lodge was a dingy setup—two twin beds, motel furnishings, and a brownish carpet, with a dearth of natural light. Down the hall was a communal kitchen where we’d bump into other caregivers and patients and have to stop for chitchat like “Just coming from the hospital?” or “How’s the old brain tumor?” The atmosphere in the building was weighted down by sadness. Everyone who lived here had left behind a real life somewhere else.

  The Hope Lodge staff worked hard to lift the mood. Downstairs, on the sixth floor, there was a living room with a fireplace and a spacious outdoor terrace where patients could sit and visit with friends and family. Classes were offered in the lounge on topics like Zen meditation and neutropenic-friendly cooking classes, and several times a week volunteers put on special events—concerts, comedy shows, and dinners donated by local restaurants. There was even a weekly “teatime” hosted by a gaggle of Manhattan ladies. Every Wednesday afternoon, they descended on the lounge dressed in Chanel pantsuits, tottering around on six-inch stilettos as they arranged platters of cakes and pastries. These women were well intentioned, I’m sure, but I couldn’t stand how they spoke to us patients in loud, slow sentences, their voices dripping with condescension, as though we weren’t just sick, but somehow didn’t speak English. I quickly came to despise teatime. I didn’t want their charity or their pity. I didn’t want to be anyone’s good deed of the week.

  My post-transplant routine consisted mainly of sleeping eighteen hours a day. When I wasn’t asleep, I lay in bed with my eyes closed, too exhausted to sit up, to talk, or to read. The only exception, strangely, was Fifty Shades of Grey. I inhaled the entire trilogy in one weekend. It was so be
yond the pale, so different from my reality in every way, that it felt like science fiction. It was also the only thing engrossingly, comically terrible enough to distract me from the overpowering nausea.

  “Classic would you rather,” I said to Will one morning. “Acute myeloid leukemia or read Fifty Shades?”

  “Leukemia,” he said, without hesitation.

  Will was fixing me breakfast, as he did each morning, though I rarely ate more than a bite. Then he’d pass me off to my mother before heading to work. The most dreaded part of my day was the daily trek from the Hope Lodge to the hospital, where I received blood transfusions, hydration, magnesium, and other nutrients that the chemo had wiped out. I was so nauseated all the time that I rarely completed the twenty-minute taxi ride across Midtown without getting sick. Once, during a particularly violent bout of backseat vomiting, a taxi driver thought I was drunk, and kicked my mother and me out of the cab. Before I could explain, he’d ditched us on the curb and driven away.

  * * *

  —

  Less than a week after I moved into the Hope Lodge, I was invited to be interviewed about the column on NPR’s Talk of the Nation. It was a big day: my first real outing since leaving the hospital. After finishing up my IV infusions, my mother and I took a taxi to the NPR office across from Bryant Park. I had never been interviewed by anyone before, and I was buzzing with excitement.

  I still couldn’t quite comprehend why, but since the column’s launch, I’d received all kinds of interview requests. Readers had begun walking up to me in the hospital’s waiting room, a few even approaching me on the sidewalks of Manhattan, to tell me how much they loved the column and that they were rooting for me. This attention was flattering, more than a little overwhelming, and at times it left me feeling a bit uneasy. Cancer had turned me into an unwitting poster child.