Between Two Kingdoms

by Suleika Jaouad

  Not everyone shared in the excitement. The column had rapidly become a source of tension with Will. He worried about the toll it took on my health and complained that I was pouring what little energy I had into work. He wasn’t wrong; it was true that I could feel my ambition bumping up against the limitations of my body. My brain, flooded with toxins from all the drugs that had been pumped into my system, felt broken. Once able to remember vast amounts of useless information in great detail, from the color of my third-grade teacher’s blouse on the first day of school to entire passages of my favorite books, I now struggled to recall the names of my closest friends or even my own cellphone number. Before the transplant, writing had been a refuge for me; now it most often resulted in frustration and tears. But I was determined to do what I could while I could, even if that meant pushing my body beyond the boundaries of what was prudent.

  The evening before the NPR interview, I’d come down with a low-grade fever and spent all night under the covers shivering, a gnarly sounding cough raking through my lungs every couple of minutes. Will and my mother both begged me to reschedule, but I refused. I didn’t know how long such opportunities would be available to me, or if I’d be well enough to do them again. I would do the interview and there was nothing anyone could say to talk me out of it.

  By the time I’d settled into the recording booth at the NPR office and the sound check was completed, I was exhausted. My hands were unsteady as I sipped from a plastic cup of water, and my voice was a frail, ragged whisper. I did my best to answer the host’s questions, as well as those of the guests who called in, though I can’t recall a word I said. All I remember was pressing the button on the control board, aptly labeled Cough, to mute the sounds of my phlegmatic hacking as my lungs gasped for air. I must have pressed that button fifty times.

  By the end of the interview, I was slouched in my chair, wrecked from the exertion of having to talk and sit upright. The host had one final question. “We just have a few seconds left,” he said. “Are you facing mortality at this point?”

  I was thrown. My mortality was something I’d logged a lot of time thinking about, of course, but this was the first time anyone had asked me this question outright. Hearing it posed out loud, on national radio, made the threat of death feel more vivid and imminent than it had ever been. It made me realize that the host, the listeners, the people who read my column—they were all probably wondering the same thing: Would I live or would I die? My survival had inadvertently become narrative suspense; strangers followed my story with a morbid curiosity about what the next weeks would bring. The thought unsettled me. I steeled myself, determined to end the interview on a strong note, but when I spoke, my voice sounded crepe-thin. “I feel very hopeful for the future,” I whispered unconvincingly.

  Whatever was brewing in my lungs that day quickly overtook my immune system. That weekend, on Mother’s Day, instead of eating brunch and watching a movie with my mom in the lounge of the Hope Lodge as we had planned, I was curled up on a stretcher in the emergency room, with her by my side. My blood pressure was bottoming out, and my heart rate was dangerously high. Despite my protests, the doctors readmitted me to the hospital. “I jinxed myself,” I told my mother, recalling my final words from the radio interview. “I should have said I feel cautiously hopeful for the future.”

  * * *

  —

  We are born needing care and we die needing care, but it was hard for me to accept how helpless I’d become. Back at the Hope Lodge, after a fog of touch-and-go days in the hospital, I was as weak as ever, reduced to a toddler-like dependency on Will and my mother. In the weeks that followed, I grew weaker, and by Day 70, I needed their help with even the most basic tasks like showering and making a sandwich. Too frail and nauseated to walk, I used a wheelchair to get around. In the middle of the night I would wake up and feel my heart’s unsteady beat against my chest, lagging and quickening in a way that unsettled me and made me hyperaware of my own vulnerability.

  Then, around Day 80, a dusky rash appeared on my forehead, and everyone went into a panic. This was the first symptom of GVHD, the potentially deadly complication of transplant I had been warned about. My doctors ramped up my dosage of the steroids and antirejection drugs and monitored me closely, hoping for the best.

  My independence wasn’t the only thing I could feel slipping away. Ever since moving into the Hope Lodge, Will had started coming home from work later and later each night. He’d call at the last minute to ask if someone could take the evening shift, and if I said that it might be difficult on such short notice, he’d ask why we didn’t have more support. I knew the Hope Lodge wasn’t the most fun place to hang out and that my body’s demands were taxing. I had no energy to give him, and yet I needed him more than ever. When we were together, I soaked up his love like a sponge, desperate to feel close again. When I brought up his growing distance, Will insisted it was all in my head. Still, I worried.

  One night, as I waited for Will to return from work, I received a text from him: I’m getting drinks at a bar on Saint Marks with some friends. Want to come? I stared at my phone, wondering how to respond. He may have genuinely wanted me there, but we both knew I was many weeks, probably months, away from being well enough to go anywhere in public. Let alone a bar on Saint Marks, one of the grimiest, most crowded places in all of lower Manhattan. As I attempted to compose a reply, tears clotted my eyes. I dug my nails into my palms, ordering myself not to cry. Sorry, I can’t. But I think you know that, I texted back. My mother was putting on her coat and getting ready to head out for the night. It was a rare evening when she had dinner plans with a friend, and although I knew she would have been more than happy to stay with me, I didn’t ask.

  Alone in my twin bed, I waited for Will. Night swooped down, submerging the room in darkness, and the city lights shone brightly outside the window. As the hours passed, a cold, visceral dread welled in my gut. I needed to eat something before taking the last of my medications, but I was too weak to walk to the communal kitchen down the hall, so I washed the handful of pills down with water. An amateur’s mistake. By the time Will came home, it was past midnight. I was doubled over a wastebasket, the sheets around me soiled in vomit, my pajamas drenched in sweat. He froze at the foot of my bed, guilt washing over his face. As he scooped me into his arms and carried me to the shower, I felt two competing emotions duking it out in my heart: I hate you, I need you.

  * * *

  —

  It was the morning of Day 100. I sat in one of the blue plastic booths in the communal kitchen as Will prepared breakfast. To appease him, I pushed a lump of congealing oatmeal around with a spoon, pretending to eat, but my thoughts were elsewhere. In a few minutes we would leave for the hospital to receive the results of the various tests and biopsies I’d undergone in the last week. In my mind there were two potential outcomes: The results would show either that the transplant had worked and I would eventually be okay, or that the transplant had failed and the leukemia would return, this time with the promise of imminent death. It never occurred to me that there might be a third possibility.

  As Will did the dishes, I scrolled anxiously through unread emails from readers, searching for a distraction. One, in particular, caught my eye. The subject line read: the difficulty of transitioning back. Attached to the email was a photograph of a young man sitting shirtless in a hospital room. He had broad, muscular shoulders, and his rosy cheeks emanated a seemingly radioactive glow. His head, like mine, was smooth and bald, but I was struck by how confident he seemed. I handed my phone to Will to show him the photograph. Will whistled. “Damn. He looks better than I do. If I didn’t know any better, I’d worry that you’d found yourself a cancer boyfriend to replace me.”

  The young man’s name was Ned. His email opened with a story. Back in 2010, Ned had been midway through his senior year of college, blissfully unaware of what awaited him on the other side of graduation. He w
as busy writing his honors thesis and had just started dating a beautiful girl. He’d submitted a Fulbright application to Italy, where he hoped to live after graduation. Then, while home in Boston during winter break, he got a CT scan that showed that his spleen was enlarged. After some more tests, the doctors confirmed that he had leukemia. It wasn’t the first time Ned had gotten sick. Three years earlier, he had been diagnosed with testicular cancer, but he mentioned this as an afterthought. “Cancer-lite,” all I needed was a surgery, was how he put it.

  It was a story I knew well. It was my story. It was the story of the countless other young cancer patients whom I’d heard from since the column’s launch, stories that had brought me comfort, showing me just how many of us there were out there, an invisible community, hidden from sight in hospital rooms and chained to IV poles.

  But then Ned’s story veered in an unexpected direction. What inspired me to write you is something that I know you’ll be covering soon enough—transitioning back to the real world, “normality,” he wrote. I’ve been having a hard time getting back on the horse. When I read that, I realized that this wasn’t a letter about cancer in youth. It was about what happened once the cancer was gone. The notion of a life after cancer wasn’t something I could entertain, at least not yet. I was still stuck in the Hope Lodge; still using a wheelchair to get around; still far too sick to contemplate anything other than my impending bone marrow biopsy results—let alone the notion of a life after cancer.

  A few minutes later, Will and I went down to the lobby of the Hope Lodge. My mother was waiting there for us, and together we went out, hailed a taxi, then climbed in. I had brought with me a couple of plastic bags in case I got sick during the ride over, but this time it was nerves, not nausea, that made my stomach churn. When we reached the hospital, we rode the elevator up to the outpatient bone marrow transplant unit in silence, too anxious to talk.

  The receptionist called my name and we were ushered to a room in the back of the clinic. I held my breath as my medical team entered, a nurse practitioner followed by my transplant doctor, who was stout and spectacled and sported a perpetually stern expression that masked a gentle disposition. “The good news is that your latest biopsy shows no cancerous cells in your bone marrow,” he said. “The transplant appears to be working—for now—but it’ll be many more months and many more diagnostic days like this one, before we can know for sure.”

  “The bad news?” I asked. Of course, I hoped that there wouldn’t be any, but by this point I knew enough about the way doctors framed these types of conversations to suspect that wasn’t the case.

  “Well, the bad news is that you are at a high risk of relapse. Because of the chromosomal abnormalities in your marrow and the fact that we weren’t able to fully get rid of the leukemia before the transplant, your disease has a strong likelihood of coming back. I’d like for you to begin an experimental maintenance chemo regimen right away, as soon as you are strong enough.”

  Sitting on the exam table, I hugged my knees to my chest. I was engulfed by despair. It was the kind of despair that felt like drowning and made voices sound small and distant, as if underwater. My mind flashed to parts of Ned’s letter from earlier that morning. What could possibly be so hard about transitioning back to normality? I thought bitterly now. All I want is normality. I’ll be lucky to ever leave these hospital rooms. My cancer was a junkyard dog. It may have been fenced in for now, but it was mean and growling, threatening to dig under the barbed wire and escape. I would have to fight like hell to keep it behind the fence. I’d have to endure more experimental treatments and after that countless tests, over months and years, tracking progress to a cure. There would always be another scan down the road. The biopsy next time.

  “How long will I have to do the maintenance chemo?” I asked my transplant doctor, bracing for the response. “A long time,” he said softly. “Another year, possibly more.” I looked at Will. His face had taken on the sunken, despondent quality of a man who was trapped. I couldn’t blame him. And yet, looking back, I see now that I did.

  17

  CHRONOLOGY OF FREEDOM

  HOME IS AN elusive concept for people like me. By the time I was twelve, I’d attended six schools on three different continents. From seventh grade onward, we’d stayed put in Saratoga, for the most part, but I never grew to feel like I was from there, or anywhere else for that matter. I got antsy when I stayed in the same place for longer than a year or two, afraid of getting stuck, like a barnacle to the hull of a ship. This is the curse of the mixed child who grows up betwixt cultures and countries, creeds and customs: too white, too brown, too exotically named, too ambiguously other to ever fully belong anywhere.

  Life since diagnosis had been no less nomadic. In the last year, Will and I had spent a combined total of six months living out of hospital rooms. We’d lived in my childhood bedroom in Saratoga. We’d lived in the guest bedrooms of friends. And most recently, we’d been living at the Hope Lodge, where the rules mandated we could stay for a maximum of three months. But by the end of summer, I was cured of my transient tendencies. More than anything, I yearned for a home.

  In late August of 2012, Will and I relocated to the apartment my mother owned on the corner of Fourth Street and Avenue A in the East Village—the same apartment where, two decades earlier, she had lived when she first immigrated to New York. As long as Will and I could come up with enough to cover the maintenance, utilities, and taxes, the apartment was ours for however long we wanted to stay.

  So much had changed since I’d last visited the building, but so very little. When I arrived I heard someone call out, “Le bébé!” and saw Jorge, who worked as the doorman in the evenings. He was now an old man, gray and slightly hunched, but he still remembered the day my parents brought me home from the hospital as a newborn. All the doors in the building were still painted the same shade of seafoam green, the hallways were adorned with faux gold moldings and art deco light fixtures. The elevator broke down on the regular and the faucets occasionally spouted rust-brown water. The matchbox-sized apartment was located on the ground floor, with windows that looked onto the dumpsters in the courtyard. Will’s parents bought us a dish rack and glasses, mine loaned us bedding and a beautiful old Tunisian rug, and a friend gave us a bed frame. We had also scoured thrift stores for an old steamer trunk, like the one we’d used as our dining table in Paris. A home, no matter how small, dimly lit, or haphazardly furnished, meant a new kind of freedom, and we felt wildly lucky.

  On our first night in the apartment, Will set two plates on the trunk and lit some candles. The last real, full meal I remembered being able to eat was an Easter dinner in the transplant unit, and until recently my food had come via tubes or through the small bites of overcooked fare I’d managed to stomach at the Hope Lodge. My weight was at an all-time low and I had zero appetite, but I was determined to enjoy our first dinner in our new home. Freedom meant being able to eat half a bowl of homemade spaghetti—and then fighting all night to keep it down.

  Freedom also meant being patient with Will in the weeks that followed, as he struggled to fill the shoes of the hospital staff and my mother, who had returned to Saratoga. He took on the bulk of the household chores, cooking and cleaning, and accompanied me to the emergency room when, every few weeks, I came down with another fever or faced some new complication. I was so weak that even walking to the pharmacy one block away was a challenge, so I spent most days alone in bed, sleeping, trying to write, and numbing out on television. I counted down the hours until noon, when Will would bike home during his lunch break to check up on me and fix me something to eat before returning to work. And then I counted down the hours until seven, when he came home. Since I still wasn’t allowed to go out to crowded places, eat restaurant food, or take public transportation, in the evenings we stayed in. The distance I’d felt from him in the Hope Lodge had lessened. Both of us were giddy about the prospect of starting afres
h in a place of our own. Freedom meant being able to share a bed together for the first time since the transplant, and reckoning with a new body that seemed to have forgotten how to speak the language of physical intimacy.

  * * *

  —

  It was a Monday morning, just past nine o’clock. I was standing outside the apartment building, and someone was trying to hail a taxi on each corner. I sat down on the curb and figured I’d wait a few minutes for the morning commute rush to calm. I had started chemo again, and no matter what I did—skip the shower, set multiple alarms, go to sleep early the night before—I always seemed to arrive at the hospital exactly thirty minutes late. I wasn’t in a huge hurry—my thirty-minute lateness buffer had become so consistent, I was almost proud of it. I was on time, but it was my time.

  Maybe I was also secretly hoping that if I showed up late enough, I’d be told I could take the day off. I strained against having to do the maintenance chemo at all. Now that I had no blast counts—no cancer, only the threat of its return—it was harder for me to rally my resolve and submit to the torturous process, even if my logical mind understood the reasons why. My new treatment regimen entailed an intravenous infusion of azacitidine, a drug I’d taken during the clinical trial. I would receive it for five consecutive days each month. Then I would have three weeks off. On paper, it sounded like no big deal. But my experience had taught me that the time off would be no vacation—I’d slog through those three weeks, leadened by the toxic chemicals, then, just as I’d start to feel better, it would be time for another five days. This was my life for the foreseeable future.