* * *
—
It had been roughly a week since I’d entered the hospital and started chemotherapy. I was feeling relatively fine, even spritely in comparison with the other patients on my floor, many of whom were bedridden or needed wheelchairs to get around. While it would be a stretch to say I was enjoying my hospital stay, I wasn’t miserable, either. When I wasn’t hanging out with the other inhabitants of the ward, Will and I played countless games of Scrabble. My parents visited me every day, spoiling me with little gifts and home-cooked dishes. And as word of my diagnosis got out, friends trickled in as well, bearing bouquets of flowers. I felt suspended—for the first time in my life, no one expected anything of me. I had the liberty to pass the time as I wanted. I wrote in my journal and signed up for an arts and crafts class. A hospital volunteer was teaching me how to knit and I was making a scarf that I planned to give to Will.
Naïvely, maybe even a little arrogantly, I began to think I’d been spared the more treacherous side effects of the chemo. Other than the usual fatigue and the mouth sores, I felt no different. Each morning, I examined my scalp in the mirror for signs that my hair was beginning to fall out, but it was thick and shiny, firmly rooted in its follicles. I thought I might be among the tiny percentage of patients who don’t lose their hair during chemo and I regretted what now seemed like a hasty decision to chop it short. I even began to entertain the fantasy of moving into an apartment with Will once I was discharged. Maybe, come end of summer, I might be well enough to start working again.
Naïveté has a shelf life, however, and mine didn’t last long.
About ten days in, I was moved into a private room—“isolation” the doctors called it—and forbidden from stepping outside under any circumstances. I hadn’t known this was coming. I was shocked and a little pissed at the strict rules that accompanied my new digs but also relieved not to have a roommate. Anyone who entered my room, which I dubbed “the Bubble,” had to wear the mandatory protective armor—face mask, gloves, surgical gown. My blood counts were being decimated by the chemo, my hemoglobin and platelets plummeting to dangerously low levels. Test results showed that I possessed nearly no white blood cells—zero the doctor on call said, cupping his hands into an O for emphasis. Soon I would be done with the chemo infusions, and over the next week, my marrow, hopefully now rid of leukemia, would start to recover and my blood cells would slowly build back up. Once I no longer needed transfusions to maintain my red blood cell and platelet counts, I would be discharged from the hospital and allowed to return home. But until then, my immune system was nonexistent and the doctor warned that a stray germ or sneeze could do me in.
Around the same time, the side effects of the chemo began to make themselves known. The lining of my throat began sloughing off, an excruciating side effect of the chemo called mucositis, which made it impossible to eat or drink or talk at anything louder than a whisper. “Are you ready to party?” Younique joked the first time she hooked me up to an intravenous morphine drip. Blessed be the excellent nurses with excellent senses of humor: They make everything better. But even with the morphine, the pain was too intense to swallow much of anything. In addition to the needle marks and bruises that now covered my arms, a spray of tiny purple dots the size of pinpricks appeared all over my chest and neck. Without platelets, the component of the blood that helps the body form clots, the capillaries closest to my skin had broken open, leaking blood to the surface. I avoided looking at myself in the mirror.
And then it finally happened: One morning, I woke up and discovered a mess of stray hairs on my pillow. By lunchtime, it was falling out in clumps, leaving pale patches all over my scalp. I ran my fingers compulsively over my skull, placing handfuls of my hair into little nest-like piles on the bedside table. Losing my hair was confirmation of what I knew but hadn’t been able to fully accept yet and I spent the rest of the afternoon fighting back tears. That evening, Will helped me tug the rest out with his hands; it was like pulling weeds from damp soil. By bedtime, I was completely bald.
* * *
—
It had been more than four weeks since I’d entered the hospital, and I was waiting for my blood counts to recover from the chemo, but to my dismay they were showing no improvement. The doctors reassured me that there was no need to worry—at least, not yet—but of course, I did anyway. In the meantime, my body had become entirely reliant on transfusions. The blood of strangers coursed through my veins, bag after bag, day after day. Sometimes I tried to imagine who these donors were—a schoolteacher, a famous actor, a tarot card reader? I couldn’t quite conjure them, but they were keeping me alive.
Being poked and palpated and locked in a room for days on end without a release date was maddening. The windows didn’t open. The fluorescent bulbs scalded my eyes. My stomach hurt, my head hurt, my limbs hurt, everything hurt, even breathing. Each time I was stabbed with a needle or given a sponge bath, I wanted to hurl my IV pole at the wall. When I lost enough weight that I could slip off my electronic hospital bracelet, I began to fantasize about escaping. Central Park taunted me from my window. During a rainstorm, I felt a visceral longing to go outside and stand in the downpour—even if just for a minute. Finally, on a day when my pain had fleetingly retreated to a tolerable level, I hid my electronic bracelet under my pillow and when the nurses weren’t looking, I ducked into the hallway and slipped into the elevator with my IV pole. I made it as far as the cafeteria on the ground floor. Then I froze. It was lunchtime, and people swarmed around me, brushing and bumping me. My anxiety mounted as I thought of all the germs in the air. I was having trouble breathing. What if I fell? What if I fainted? A few minutes later, I was back in my room. Beep, beep, my IV chirped. Strangely, I felt safe again.
If anyone could understand what I was living, it was the other patients, but I wasn’t allowed to interact with them anymore, as the germ risk was too high. I missed their camaraderie and I tried to keep tabs on their progress through games of telephone facilitated by the nurses. Estelle had been discharged, and she was recuperating back home in Staten Island. Dennis’s latest scans had lit up like the Milky Way, a constellation of new tumors in his lungs. He, too, would eventually need a bone marrow transplant. As for Yehya, he still walked by my room in the afternoons and, if no one was looking, he’d crack open the door, flash me a thumbs-up, and tell me Allah had my back.
I was still allowed visitors from the outside, but even that had become complicated. The people I’d played beer pong with in college had not reached out, and even though I was not surprised, I felt wounded by their silence. Instead, I tried to focus on those who did show up—my friend Mara, who came to see me nearly every day, and a cohort of old childhood pals, classmates, and colleagues, who stopped by with gifts. In the days after my diagnosis I’d welcomed their company, even craved it. But over time, I grew allergic to the looks of pity and the positivity pushers who tried to cheer me up with their get-well cards and their exhausting refrains of “stay strong” and “keep fighting.” I began to feel angry at people’s trivial complaints about a stressful day at the office or a broken toe that meant they couldn’t go to the gym for a couple of weeks, and it was hard not to feel left out when my friends told me about a concert or a party they’d been to together.
Worse were the disaster tourists: those whom I didn’t know well but who came out of the woodwork, showing up unannounced at my hospital room door with an overzealous desire to help or to bear witness to the medical carnival that my life had become. They would gape at my bald head, all misty-eyed, and I’d find myself having to console them. Or they’d bombard me with unsolicited medical advice, telling me about a great doctor they knew or a friend of a friend who’d cured their own cancer with things like essential oils, apricot kernels, coffee enemas, or a juice cleanse. I knew that most meant well and were doing the best they knew how, so I smiled and nodded, but I was silently fuming. As I got sicker, fewer and few
er came—and when they did, I began pretending to be asleep.
I wasn’t entirely alone, despite my attempts to retreat from the world. Dr. Holland came to visit me nearly every day during his lunch break. He was gracious toward the nurses and the hospital staffers. Unlike some of the other attendings, who could be brusque and condescending, his bedside manner was unhurried and he always treated me with dignity, careful to make me feel like a person first and a patient second. After he was done examining me, he would sit in the recliner next to my bed, and we’d chat about everything from politics to art history and our favorite books.
Will, who was still unemployed, virtually lived in my hospital room, sleeping next to me every night on a too-short visitor’s cot. My parents took the day shift, taking turns sitting by my bed and plying me with all of my favorite snacks in an attempt to get me to eat. Since entering the hospital, I had shrunk from a healthy size six to a double zero—the same size I’d been in the sixth grade—but I was often in too much pain to swallow, let alone choke down a forkful of mushroom risotto. I tried to perk up when they were around, but it was hard to stay awake for longer than a few minutes. My mother bought a poster of a Vermeer painting and hung it on the wall next to my bed. The painting showed a young woman playing the lute in a darkened room, her face turned to the window, her expression pensive and outward. “She reminds me of you,” my mother said.
I knew how lucky I was to be surrounded by such love—many patients in the ward had no one to visit them at all—but even with my parents and Will by my side, I felt achingly isolated. My post-diagnosis euphoria and all my lofty plans had long since evaporated. I no longer had the energy to journal. My knitting needles and the half-completed scarf gathered dust. I never did read War and Peace or any of the other books on my bedside table. I was bored, nearly to death, but too exhausted to do anything about it.
* * *
—
One afternoon, after more than five weeks in the hospital, a team of doctors in baby-blue face masks appeared in my room. They loomed over my hospital bed, peering down at me. Eyes and ties. And white lab coats. “I’m afraid we have some bad news,” a masked mouth said. “When you entered the hospital, you had thirty percent blasts in your bone marrow. Your latest biopsy results show that the number of blasts has more than doubled, to about seventy percent.”
“Can you come back when my mom is here?” I whispered. I suddenly felt like a child.
Later, with my parents by my side, my medical team explained that I was going into bone marrow failure and that the standard treatments were not working for me. My father looked gutted. My mother seemed like she was about to break down, but when she caught me looking at her, she quickly blinked back her tears and rearranged her face into a more stoic expression. The doctors recommended I enroll in a phase II experimental clinical trial, meaning it was not yet known whether the new chemo drug combination was safe and effective, let alone better than the standard of care. At a time when everything already seemed so uncertain, I didn’t want an experimental trial. I craved hard facts, statistics, and proof that my treatments were worth the havoc they had wreaked on my mental and physical health, and on the lives of my loved ones. As much as I was for scientific research, I had no desire to be a guinea pig. I wanted a cure.
“Wouldn’t I be better off spending this time with you guys or smoking pot on some tropical island, or whatever it is you’re supposed to do when you’re dying?” I asked my parents. No one knew what to say. The doctors didn’t have any answers for me either, but they kept insisting that the trial was my best option, and that the longer I waited, the fewer options I might have left. In the end, I agreed.
* * *
—
On the Fourth of July, the eve of my twenty-third birthday, I got special permission to leave the Bubble for a couple of minutes, the first time I’d stepped outside of my hospital room in nearly six weeks, with the exception of my aborted escape plan. I had heard a rumor that you could see the fireworks from the back corridor, by the elevators. After donning the mandatory protective armor, Will and I walked down the hallway, dragging my IV pole behind us. We stopped by Yehya’s room to see if he wanted to join. He was too tired to get out of bed, but he had gifts waiting for me on the bedside table—a pink friendship bracelet and a wooden plaque painted in bright primary colors with the words I’M SUCH A BIG YOU FAN! that he’d asked his wife to procure from the hospital gift shop. Will helped me put on the bracelet and carried the plaque. Then we collected Dennis, and the three of us walked past the nurses’ station and out of the ward.
When we arrived, a group of patients were already clustered in the back hall, peering out the windows. From behind the thick glass we could see only dimly, like goldfish peering out of a dirty aquarium. But if you angled your body down to the left and craned your neck to the right, you could catch glimpses of the fireworks in the distance. They were red and blue and gold; they exploded high into the sky, spraying color over the skyscrapers, but they were miles away and we couldn’t hear their bursting from behind our soundproof barrier. The fireworks, the city, its inhabitants—the world—felt as far away as the moon. Meanwhile, the alarm on an old man’s IV machine had gone off and it wouldn’t shut up, the beeping enough to make anyone snap.
“Sorry to swear,” I said, turning to Will and to Dennis, “but this is the most depressing fucking thing I have ever seen.” My shoulders shook. At first, I thought I was going to cry, but then I burst out laughing. All of a sudden, everyone was laughing. Giggles and roars and oceanic tears at the absurdity of it all.
10
STOP-TIME
AFTER ALMOST TWO months in the Bubble, my doctors sent me home for a couple of weeks, to regain some strength before I began the clinical trial. My blast count was still terrifying—high enough that were it not for how weak I was, I would have started the new chemo drugs immediately. But the risk of the drugs killing me outweighed the risks of the blasts continuing to multiply in my marrow and blood. So, sicker than I’d ever been but off all treatment, I returned to Saratoga.
Stepping out onto the porch, I luxuriated in the movement of my legs, the in and out of my breath, the sun on my skin. Like an inmate released after a long sentence, I marveled at everything: a light rain misting my face; the sight of fireflies blinking in the garden at twilight; the smoky scent of barbecued ribs rising from our neighbor’s grill over the hedge between the houses.
I tried to make the most of my newfound freedom. Whenever I was feeling well enough, Will would help me into the minivan, bundle me in blankets, and we’d go for long drives in the countryside. If I had the energy, we’d go for a walk. Downtown Saratoga was an eight-minute stroll from the house; twenty if you had leukemia. The annual horse-racing bonanza that draws bettors, tourists, and big-hat wearers each summer was in full swing. On every street corner there were buskers playing music. The main drag, Broadway, was crowded with a rowdy contingent of Harley motorcyclists, who parked their bikes in long rows along the street, and die-hard gamblers, who eschewed the track for dive bars where they could watch the races on television.
Being outdoors was a welcome change from the Bubble, but with my lunar-bald head, lash-less eyes, disappearing eyebrows, and face mask, I quickly became aware of the stares. Back in the cancer ward, I’d looked like everyone else. Now everywhere I went, I stood out. Cancer spoke for me before I could say the first word, and rooms went quiet when I walked in. There were perks to this; I got lots of free coffees and ice cream cones that summer, moist-eyed cashiers saying, “Feel better, honey. This one’s on the house.” But other times, the stares made me feel like a freak. One afternoon, as I stepped out of the bathroom at the public library, a little girl pointed at me and screamed.
More often than not, I wasn’t well enough to venture outside. A bone-crushing exhaustion kept me leashed to the old leather couch in the living room, with Will by my side. He had a knack for t
ransforming my bad days. “Movie day,” he’d announce, as though we were electing to spend the daylight hours inside. “You have a big black hole in your knowledge of American pop culture, so I’ve made us a curriculum. Today, we’re tackling the late eighties. We’ll start with Ferris Bueller’s Day Off, The Breakfast Club, and Coming to America. Then we’ll break for lunch.”
The caregiver’s life is ultimately dictated by the cycle of decay and demands of someone else’s body. Will had moved into this new role with an enthusiasm and a devotion that awed everyone. Each morning, he helped my mother prepare homemade rice pudding, the only thing I could stomach, and verbena tea infused with fresh sprigs of mint, which was supposed to help with nausea, and then he would bring everything up to my room on a platter so I could eat in bed. He assisted my parents with chores around the house, and played basketball in the afternoons with my brother, who was home for the summer. He organized my pillbox, changed the dressing covering my catheter, and came with me to every single doctor’s appointment. Will never complained, even when it meant missing out on parties or beach trips with friends. He reassured me again and again that there was nowhere else he’d rather be than by my side. I liked to think that if our situations were reversed, I would have had the patience and selflessness to care for him the way he did for me, but a part of me doubted that was true.
* * *
—
Will’s folks visited that summer, traveling all the way from California to show us their support. It was my first time meeting them, and I wondered what they would think when they saw me in the flesh, all blanched and gray, with tubes protruding from my chest. I worried that a part of them would wish for a different kind of significant other for their only son. Someone like Will’s ex, who had a full head of silky blond hair, a staff writer position at a prestigious magazine, and working ovaries—someone with prospects instead of a prognosis.
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