Between Two Kingdoms

by Suleika Jaouad

  A taxi slowed, and I halfheartedly waved it down. The driver was an older man with salt-and-pepper twists and a heavy Jamaican accent. As we sped up the FDR Drive, the highway that runs along the eastern edge of Manhattan, I caught a glimpse of a young woman cycling on the bike path along the East River. She looked about my age, tan, athletic, her blond ponytail dancing in the wind. Someday, maybe I’d ride a bike to the hospital, I thought. Once I was well enough.

  “Hel-lo? Anyone home?” said the taxi driver. We’d arrived at the hospital, and I had been lost in my thoughts. “Everything okay?” I had this running joke in my head that one day, when someone asked me how I was doing, I’d unload a monologue about my latest cytogenetic report or biopsy results, just to see how they’d react. But the driver was just trying to be nice. I knew he didn’t actually want me to explain how a bone marrow transplant can leave a person disoriented and scatterbrained. Or that I’d become quasi-narcoleptic in public. So instead I kept my mouth shut, paid the fare, and exited the cab with a quick “thanks.”

  The familiar scent of antiseptic stung my nostrils as I stepped into the main lobby of Sloan Kettering. With its twenty floors, sparkling steel elevators, and walls lined with artwork, it resembled a giant cruise ship packed with cancer patients and the people who cared for them. It even had the weird, scaled-down amenities of a cruise: a Starbucks cart, a dining hall, the occasional chamber music concert, and a recreation floor, with arts and crafts activities and a library where patients could check out battered copies of Harlequin Romance novels. The building was spotless and equipped with state-of-the-art equipment, but there was a weariness, bordering on shabbiness, throughout. The waiting rooms were decorated with seventies-style furniture and the marbled linoleum floors were worn where doctors and caregivers had paced over the years. The urgent care unit was always at capacity and patients in wheelchairs and stretchers overflowed into the hallway.

  The first time I visited Sloan Kettering was a few days after my diagnosis, when I’d come seeking a second opinion. With my waist-length hair and nose ring, I didn’t look like the other patients. In the waiting room, a middle-aged man with a sleeveless shirt and a bandana covering his hairless head had leaned in toward my father, who has been bald since the nineties, and, assuming he was the one undergoing chemo, raised his fist in the air. “Live strong, brother,” he said. I remember feeling vindicated, as though the mix-up was proof that I didn’t belong here—that I was somehow different from these patients in their various stages of decay. Now I found the patients and the sterile scent of Sloan Kettering soothing. With my quarter inch of duckling blond hair, patchily growing in and soft as down, I fit in and felt at ease here. I understood the protocols, spoke fluent medicalese, and could navigate the complex web of hallways with my eyes closed. It was the outside world that had grown foreign, even a little frightening.

  I pumped the hand sanitizer dispenser three times—my good luck ritual—and rubbed my palms together, then pulled on a pair of blue latex gloves and a fresh face mask, and marched to the B elevators. I shivered when the doors opened onto the fourth floor. The outpatient bone marrow transplant clinic was kept airless and cold, like a meat locker. I swiped a heated blanket from the nurses’ station—an oven-like contraption there kept them toasty warm—and took a seat.

  The hours spent sitting around in waiting rooms seemed endless, best passed in a state of stillness, or people watching. Over time, I’d become an expert in recognizing the different phases of Patienthood: The newly diagnosed were often accompanied by an entourage of friends and relatives carrying flowers and gifts; some semi-balding father or son with an already low-stakes hair situation would shave his head in solidarity, believing he deserved a badge of honor for this sacrifice. After a few weeks, the entourage would thin. A calendar designating “Chemo Buddy Duty” would be drafted so that friends and family could take turns accompanying the patient. Within six months, the patient would be sitting next to a single caregiver, whose heavy responsibilities left them grumbling about the parking situation or the “hellish wait times.” If the patient had the misfortune of being sick for longer than a year or two, it would eventually be determined that they could handle coming to the hospital alone.

  Today, for the first time since my diagnosis, I had joined the ranks of the latter—however, I wasn’t the only one. I noticed a young man who’d just entered and was donning the requisite mask and gloves. He looked to be in his late twenties, tall and lanky with a wool hat covering his head. He seemed nervous as he scanned the crowded waiting room for a place to sit. The only empty chair happened to be directly to my right and we nodded at each other as he approached.

  “Suleika, right?” he said, extending a gloved hand. “I’m a big fan of your column.” He introduced himself as Bret, and as we waited, he told me about what he described as a losing battle with lymphoma, and how he and his wife were considering uprooting their lives in Chicago to move here, to New York City, so that he could undergo a bone marrow transplant. I listened, then shared with him the relevant parts of my experience. I told him that he’d be well taken care of if he decided to have his transplant here, and I also offered to connect him to the Hope Lodge, where he and his wife could live free of charge. By the time Bret’s name was called, his hands were steady, and I felt grounded by our conversation—our connection. We exchanged phone numbers, and I promised to look him up if I was ever in Chicago. But once he disappeared behind the curtain, I was on my own again.

  When I was finally called into the chemo suite, I saw Abbie, one of my favorite nurses. “Your eyes are red,” she said, with a hint of concern. “I’m just tired,” I began to say—and that was partially true. I hadn’t been sleeping so well lately. The high dose of steroids I took to fight the GVHD gave me insomnia, and I’d stay up late watching movies in bed. But before I could say anything else, I found myself full-on weeping. The outburst surprised me. At home, I had turned into a walking tear fountain, but I rarely did so in front of others.

  My spirit had been troubled waters lately—churning, uneasy—ever since I’d found out I would need to do more chemo. With Will busy at work and my parents back home in Saratoga, freedom was learning to care for myself. It was an enormous pillbox labeled with the days of the week, and the responsibility to take the dozens of medications on time. Freedom was going solo to chemo. It was the realization that I was in this alone. In a sense, I always had been.

  18

  THE MUTT

  AS A KID, while my brother and our friends were busy climbing trees and chasing soccer balls, I scoured the sidewalks and bushes for abandoned animals. I never passed a discarded cardboard box or a dumpster without peeking inside, checking for litters of kittens that had been tossed away with the trash. When adults asked me what I wanted to be when I grew up, I replied with all the earnestness in the world: the Mother Teresa of strays.

  All those years, I begged my parents for a puppy, but they said no every time—we moved around too much, and they didn’t want the extra responsibility. Every day after school in the fourth and fifth grades, I rode my bike to the local animal hospital, where I helped clean kennels, observed surgeries, and restocked the supply closets. I spent my allowance on old veterinary science textbooks as well as kibble, kitten formula, and toys to donate to animal rescue organizations. I memorized all 274 dog breeds recognized by the American Kennel Club and forced my parents to quiz me on their behavioral traits, health needs, and life expectancies. When I was ten, I asked my brother for an incubator for Christmas. By spring, to my parents’ dismay, I was carting around a dozen baby chicks in my old doll stroller. After that came the hamster-breeding business followed by a pet-sitting side hustle. In middle school I made weekend pilgrimages to the animal shelter, where I spent my days communing with mangy old dogs. I especially liked the mutts—the scruffier, more mischievous and feral, more utterly untrainable the better. On some level, I think I related to them—they were ou
tsiders, searching for a home.

  I clung to this calling for a while longer, fostering a newborn kitten that I named Mohamed for a brief time in college. But I was busy with classes and soon had to hand him over to a more reliable owner. As time passed, there was summer travel, orchestra rehearsals, boyfriends, and parties. After graduation, there was no room in my adult life for a pet. I could barely take care of myself.

  A therapy dog had come to visit me in the early days of my diagnosis back at Mount Sinai, a small energetic spaniel that had jumped around on my hospital bed, playfully tugging at the blanket on my lap. For the first time since falling ill, I didn’t feel like I was being treated as if I were made of porcelain. The visit with the therapy dog sparked a renewed wave of pleading for a pet, just as I’d done as a kid, and ever since moving into the apartment with Will, I’d become even more fixated on the idea. I spent hours on my computer scrolling through animal adoption websites. But I knew the medical reality: My weakened immune system made getting a dog impossible. My transplant doctor didn’t think twice about rejecting the prospect. Still I made a point of asking every few weeks.

  One October morning, while at Sloan Kettering for a checkup, I learned that my transplant doctor had taken a short-term medical leave. In his absence, I was being reassigned to a different doctor, named—quite auspiciously—Dr. Barker. With her, I decided to try my luck.

  “What do you think about me getting a dog?” I asked within minutes of our first appointment.

  She mulled it over for a moment. “Sure,” Dr. Barker replied. “I don’t see why not.” She pointed out that my immune system was stronger—not as strong as it could be, but strong enough—and caring for a pet might even be therapeutic, she said.

  I didn’t waste much time. Later that afternoon, I convinced Will to take me to a rescue animal organization in SoHo after work—“just to look.” I went straight for the runt. He was an ugly terrier mash-up—a “schnoodle,” part schnauzer, part poodle—with sparse white fur that barely concealed his mottled purplish flesh and floppy ears. I couldn’t resist and asked to hold him. He was small enough that he fit into the palm of my hand. Growling, with a scruffy goatee and a mischievous glint in his eyes, he looked grumpy and slightly unhinged, but full of character. It was love at first sight. “That’s my dog,” I said.

  Will was apprehensive, worried about the exposure to germs and the added burden of caring for a pet when we were already up against more than we could handle. I begged, promising to take precautions to protect my health and coming up with an inexhaustible flow of solutions: The dog would wear disposable booties on walks to keep his paws as unsoiled as possible. I vowed to wear gloves when feeding and cleaning up after him, swore that he would never sleep in the bed, and made a list of four friends who could help take care of him when I lacked the energy.

  “You are relentless,” Will said with a hint of a smile.

  When I told the woman at the desk that we were interested in adopting the runt, she said that there was a wait list of a dozen people ahead of us who’d already put down applications for the same puppy. She would need to review all of the applications and to call everyone’s references before a decision could be made. I hesitated for a moment, then implored, “Any idea when we might expect to hear back? I was hoping to get the puppy before my next round of chemo. You know what they say…dogs are the best medicine.” It was the first and only time I would ever play the cancer card, but I desperately wanted the runt. Clearly moved by the intensity of my performance, the woman practically thrust the adoption papers at us. In the taxi ride back to our apartment, the runt became “Oscar.”

  That first night with Oscar was the happiest I could remember since my diagnosis. Within an hour, he had peed twice and taken a shit of shocking proportions on the old Tunisian rug in our living room, but I was too smitten to care. Will quickly got into the spirit of things and together we gave him a bath, fawning over him like ecstatic new parents. When Oscar finally crashed on my chest, I rubbed his belly and watched him sleep, his tiny black paws twitching as he chased rabbits through dreams. The warmth of his body and the steady beat of his heart against my chest relaxed me, and I fell asleep on the couch, with Oscar curled under my arm.

  Reality set in the next day when Will went off to work and I found myself alone with Oscar for the first time. I was not prepared for the task of sprinting outside half a dozen times a day, carrying an incontinent puppy, an arc of urine splattering the hallway floors before I could reach the doors. The chemo and transplant had left me devoid of energy, and I still needed so much rest. But Oscar didn’t give a damn if I was too nauseated or in pain to play fetch. Caring for him quickly became the most dreaded part of my day. Every morning, after Will left for work, Oscar would begin the process of baptizing my toes with his tongue until I woke up. Then off for a walk. After a few blocks, he was warmed up and ready for a run, whereas I was exhausted and ready to crawl back into bed. I wondered if I’d made a huge mistake.

  But slowly, in time, the two of us started to get our acts together. Living with Oscar left me no choice but to develop a structure to my days that revolved around his needs rather than my own. Oscar stopped using the living room rug as his personal pee pad, and I stopped sleeping in until noon. Oscar finished getting his booster shots, and I got all of my childhood vaccinations for the second time. (A patient’s childhood immunizations are lost during a bone marrow transplant.) Trying to keep up with Oscar also turned out to be good rehab. My muscles had atrophied from spending so much time on bed rest, but within a few weeks of being forced to take multiple walks a day, we were bounding up and down stairs, taking them two by two.

  For the first time in a long time, it wasn’t cancer that dominated my days. “Okay, buddy,” I said, clapping my hands as I called Oscar for his walk. “Lead the way.” He leaped ahead, tugging at the leash as he guided me out of the apartment building and toward the dog run in Tompkins Square Park, where we’d made lots of new friends. There was Mochi, the terrier mix who liked to wrestle in the sand with Oscar; Thelma and Louise, the shy brother and sister beagle duo who preferred to watch the other dogs play from a distance; and Max, the giant coonhound, whose favorite activity was attacking the fur trim on women’s coats. Rather than stare at the poor girl in the face mask, passersby stopped to pet Oscar and to tell me how cute he was. The other tenants in my building now said hello to my dog before greeting me. And instead of discussing my symptoms and treatment plan for the week, Will and I were busy with potty training and obedience classes. It was nice not to be the center of attention for a change.

  I was still in a tenuous type of remission reserved for “high risk” leukemia patients in their first year out of transplant. I still took twenty-three pills a day and spent most hours—both sleeping and awake—in bed. I still had weekly checkups at the hospital, and I still felt anxious at each appointment, as I waited to hear that my blood counts were all right. And once a month, I still did a five-day course of chemo. Oscar couldn’t change what was going on in my marrow, but he was working a different kind of magic. Since adopting him, I’d felt a burst of energy, a glimmer of being normal again.

  19

  DREAMING IN WATERCOLOR

  BEING IN A hospital can feel a lot like living in a big city. Activity swirls around you as patients walk the hallways, residents make their morning rounds, nurses chat in clusters by the coffee machine. Still, you can feel profoundly isolated, alienated.

  Without a caregiver to accompany me to appointments anymore, the hours of tedium were relieved only by the messages from readers that continued to flood my in-box. Since the launch of “Life, Interrupted,” it had been syndicated in magazines and newspapers and was gaining a sizable following. I didn’t have the stamina to write a new column each week, but I did keep writing, slowly, every day, even if it was only a paragraph. Other than the occasional waiting room chitchat or sidewalk hellos, I never thought to
take encounters with readers any further. But I was starved for conversation with someone I could relate to, for an antidote to the loneliness. As I sat in the waiting room, preparing to begin my third cycle of the maintenance chemo, I read a Facebook message from a young woman by the name of Melissa Carroll, who was also undergoing treatment at Sloan Kettering. I responded, asking if she wanted to get together, and she replied a few minutes later, saying she was also at the hospital that day and asked if I wanted to hang out.

  After I finished my chemo in the bone marrow transplant clinic, I took the elevator upstairs to eat lunch with Melissa during her infusion. At thirty, Melissa was one of the oldest patients in the pediatric cancer ward. She had Ewing sarcoma, a vicious type of bone cancer that typically affects toddlers and teens, which was how she had ended up on the ninth floor.

  The pediatric ward was a world unto itself. The walls were decorated with painted murals and cheery paper cutouts of animals. The fluorescent lights, harsh and unflattering elsewhere in the hospital, were warmer here, casting a cozy glow. It was the week before Halloween, and all of the doctors and nurses had dressed up in costume. Even the face masks were hooked up—they came in every color of the rainbow and some had smiley faces and mustaches painted on them. Opposite the reception desk was an enormous rectangular playpen filled with toys, games, dollhouses, and stuffed animals. A girl, no older than five, with translucent skin and a thin scar that snaked down the center of her skull, pushed a doll in and out of a wooden box. When I looked more closely, I saw that the box was a toy CT scan machine. Next to the girl, a nurse sat cross-legged, quietly explaining to her how it worked, like a warped version of preschool.

  My quest in the last few months had been to become an adult, as if adulthood were a test I could study for, fill in the right answers, and ace. I was twenty-four years old. I had a puppy to raise, bills to pay, and columns to churn out. I had a boyfriend whom I was going to marry once I was done with treatment, and I went to my chemo appointments all by myself. But standing there among the brightly painted walls and jars of lollipops, I wished badly that I could be in pediatrics, where I was closer in age to many of the patients, rather than downstairs in the bone marrow transplant clinic with the early bird dinner crowd.