* * *
—
Forty-eight hours after my diagnosis, I watched from behind the curtains of my bedroom window as a car pulled up, tires crunching on the gravel driveway. Will was here, fresh off the plane from Paris. He paused on the sidewalk to take in the leafy, tree-lined block and the white Victorian with green shutters, flanked by the lilac bushes, daffodils, and bleeding hearts my mother tended to each afternoon. For a moment, I wasn’t sure what made me more nervous: Will meeting my parents for the first time or the chemo I was scheduled to begin in a few days. In the past, my father had always been unsparingly tough on my boyfriends—though it might be more accurate to say that he barely acknowledged their existence. But this time, it was different. When he met Will, he shook his hand and kept thanking him for coming. “I’m so glad you’re here,” my father said.
For the first time, my parents did not make up the futon in the study when a boy came over to stay. I suppose we all had bigger problems to worry about now than keeping up appearances. It was humid and hot when Will and I went to bed that night, the air pushing down on us like a wet, wool blanket. We undressed and had sex in my childhood bedroom with its pink walls and posters, careful not to wake up my parents in the room next door. Afterward, Will began to weep. “A lot of bad things are about to happen,” he said. “We need to put our relationship into a box and to protect it with everything we have.”
8
DAMAGED GOODS
MY MOTHER, A talented classical pianist, taught me my first scales and started me on lessons in kindergarten, but it wasn’t until the fourth grade that I chose music for myself. Miss McNamara, the music teacher at Lake Avenue Elementary School, stood in front of the class with a dozen stringed instruments lined up at the front of the room. “Come up and pick your instrument,” she invited us.
The thought that I could choose my instrument was a revelation. The violins and cellos were the hottest items, but I was curious about the big wooden object at the end of the row, leaning up against the chalkboard. The double bass. It was taller than I was—taller than Richard Saxton, the tallest boy in my class—and what’s more, my teacher told me I was one of the only girls in her memory who’d expressed interest in playing it. I felt strangely drawn to the instrument’s bulk, its shapely wooden torso and long neck that curved heavenward into a scroll. I plucked at its strings, thick as worms, a low, pleasant grumble of notes emanating from the f-shaped holes. With my unpronounceable name and immigrant parents I’d always felt like a misfit at school, and the bass struck me as its own kind of outlier in the orchestra. That afternoon I took the instrument home and gave it a name: Charlie Brown. I was going to be a double bassist. “Okay fine,” my mom said, “as long as you promise to keep up with your piano lessons.”
At age sixteen, I was offered a scholarship to attend the precollege program at the Juilliard School in New York City. Every Saturday for the next two years, I rose at four in the morning, and my dad drove me the forty-five minutes to Albany so that I could catch the train to the city—a three-hour ride on Amtrak—often barely making it on time to my nine o’clock music theory class. After a long day of orchestra rehearsals, master classes, and auditions, I hauled my bass onto the M66 bus and rode across town to the Upper East Side, where I stayed the night with my friend Caroline and her family, then took the train back home the next morning. Everywhere I went, my bass came with me. It attracted stares—and sometimes unwanted offers of help from strange men. Lugging it around the subways and buses and sidewalks of Manhattan was a chore—especially for a teenage girl who insisted on wearing impractical shoes—but it was worth it. When I showed up somewhere to play, I felt like I had already warmed up.
* * *
—
Six years later, in the days after my diagnosis, I found myself making the same four-hour commute to the city and crashing at the same friend’s house that I had as a teenager. But now I was on my way to meet with my new medical team. The doctor in Saratoga had said my leukemia was too advanced to be treated locally and that I would need to transfer my care to one of the cancer centers in Manhattan.
Caroline’s father was a two-time cancer survivor and, upon hearing the news of my illness, had immediately called my parents to offer his support. He referred us to one of the city’s most renowned oncologists and generously insisted that we stay at their apartment for as long as needed. This was all an extraordinary privilege, I would soon realize. Without the health insurance I received through my father’s employer, the disability payments from my paralegal job that helped foot the already mounting medical bills, and the friends who offered us their home and their connections, my family would have faced financial ruin, and I, certain death.
* * *
—
Everything in Mount Sinai’s cancer wing was baby-food beige: beige carpets, beige walls, beige vinyl chairs. The waiting room was crowded with patients, many of whom were bald, some in wheelchairs, others shuffling around with walkers. My parents and Will had come with me to this first appointment, and as we took a seat, I couldn’t help but notice that I was the youngest patient by several decades in the room. There was a freezer by the reception desk with free ice cream, a thoughtful touch, and I helped myself to a strawberry popsicle. The ice numbed the half dozen sores that scourged the inside of my mouth. A television flickered from the corner of the waiting room, the sound on mute. On the screen I noticed a familiar face, a voluptuous blonde who was demonstrating how to make a watermelon and feta salad, adorned with sprigs of mint. I recognized her. She had been a year ahead of me at college and was now, apparently, hosting a cooking show on daytime television. Oh, and she also appeared to be pregnant—a round baby bump protruded beneath her apron. How strange to be here, in this depressing room, I thought with incredulity, while my peers were out there, starting careers, having babies, traveling the world, and hitting all the other milestones of young adulthood.
After almost two hours of waiting, we were escorted to a sterile room, where we were greeted by an older man wearing a white lab coat and a blue silk cravat. “I’m Dr. Holland,” the man said, with a broad, warm smile. He had neatly combed white hair, bushy eyebrows, and a prominent nose. Although his back was stooped with age, he possessed a magisterial presence. “Rule number one: no hand shaking, with anyone,” he instructed sternly, leaving my outstretched arm hanging. “Your low blood counts make you extremely vulnerable to germs, and you need to be very careful from now on.”
Dr. Holland was the chief oncology officer of Mount Sinai Hospital. He was considered a founding father of chemotherapy and had helped pioneer lifesaving treatments for countless cancer patients. In the 1950s, when he finished medical school, leukemia was still considered a death sentence. He and his collaborators had been called “research cowboys” by their colleagues for attempting to treat the incurable disease with several chemotherapy drugs simultaneously instead of sequentially. The clinical trial to contain leukemia that Dr. Holland directed had proved successful, and had since become the standard treatment for patients like me. Now, despite being in his late eighties, he still worked five days a week, both seeing patients and conducting research. His eyes, magnified by enormous wire-rimmed glasses, missed nothing, as he studied me and my entourage. “You must be the mother and father,” he said, nodding at my parents. “And you are?” he asked, turning to Will.
“The boyfriend,” Will replied.
“Very good. I’m glad to see you all here,” Dr. Holland said. “Suleika is going to need your support, a lot of it. And you are going to need to take good care of yourselves so that you can be strong for her.”
Over the next half hour, Dr. Holland prepared us for what was to come as my mother dutifully took notes. I would be admitted to the hospital tomorrow or the day after, and I would stay for roughly three weeks, as I underwent an aggressive course of chemotherapy. The goal was to get rid of as many of the leukemia cells—or “bl
ast cells,” in medical jargon—as possible. These large, immature, rapidly multiplying monsters signified the presence of cancer in my bone marrow. The chemo regimen, referred to as “seven plus three,” consisted of two highly potent intravenous drugs, cytarabine and daunorubicin, which I would receive for seven days. All these new terms were overwhelming, and I found myself wishing I’d paid better attention in my high school science classes. “If all goes well, you’ll be home recuperating before you know it and you can enjoy the rest of summer,” he said optimistically, while being careful not to make any promises.
Dr. Holland asked me to hop up on the exam table. He looked in my mouth, clucking his tongue at the sores, and made a note to prescribe something stronger for my pain. He listened to my heart and lungs and palpated my hollowed abdomen. Midway through the exam, we were interrupted by two doctors, a middle-aged man with a gray mustache and a young woman with long, dangly emerald earrings. “Sorry to interrupt,” one of them said. “The rest of her biopsy results just came in, and we need you to take a look right away.” All three doctors scurried out of the room, leaving us alone. Will, my parents, and I sat wordlessly, exchanging worried glances.
When they returned a few minutes later, Dr. Holland’s mouth was drawn into a flat, grim hyphen. He explained that further test results had revealed that my leukemia was far more complicated than anyone could have predicted. I had a rare bone marrow disorder called myelodysplastic syndrome, known as pre-leukemia, that had gone undiagnosed. I’d likely had it for a long time, which explained the slow onslaught of symptoms I’d experienced over the last year—the itch, the exhaustion, the anemia, the shortness of breath, and the frequent colds—before my condition had grown more acute and turned into full-fledged leukemia. Myelodysplastic syndrome typically affected patients older than sixty, Dr. Holland explained. It had no known cause, although it was linked to exposure to toxic chemicals like benzene, pesticides, and heavy metals like lead.
“When you were a baby, I used to take you to my studio and I painted with you strapped to my chest in a sling,” my mother said, her face stiff with guilt. “Is it possible that exposure to the paint fumes caused this?”
“This is no one’s fault,” Dr. Holland said gently. “Sometimes these things just happen, and we don’t know why. You mustn’t blame yourself.”
Up until this point, the extent of my knowledge about bone marrow came from French cuisine—boeuf à la moelle, the fancy dish occasionally served with a side of toasted baguette. Dr. Holland explained that the marrow, an organ at the very core of the body, was a living, sponge-like tissue that filled almost every bone. In a healthy person, the marrow was responsible for producing all of the body’s blood cells: white cells that fight off infection, red cells that provide oxygen, and platelets that stanch bleeding. In a person with myelodysplastic syndrome, the process was disrupted; instead of developing normally, the blood cells died in the bone marrow or just after entering the bloodstream. Even with extensive chemotherapy, I would eventually go into something called “bone marrow failure.” Other ominous terms I didn’t understand yet like “multiple chromosomal abnormalities,” “monosomy seven,” and “poor prognosis” were also mentioned.
All this meant that, in addition to chemo, I would eventually need a bone marrow transplant. It was a dangerous, complicated procedure with a high mortality rate, but it was my only shot at a cure, Dr. Holland explained. I would be eligible for transplant only if the chemo managed to reduce the percentage of leukemic blasts in my marrow to under 5 percent—and, of course, if I was able to find a suitable donor. Without a donor, the path to a cure became much less certain, or even impossible. Finding a match was especially challenging for minorities who were underrepresented in bone marrow registries. As a first-generation American from a mixed ethnic background, I found myself in a scary place. A harried, global search for a Swiss-Tunisian bone marrow match would delay the process. My brother, who was still studying abroad in Argentina, was my best hope. He would need to leave school and fly back to New York right away to be tested. But Dr. Holland was careful to temper hope with reality. Siblings were the best chance for a match, but a match only happened about 25 percent of the time. I had thought that receiving a diagnosis meant an end to the months of uncertainty. I was wrong. Medicine, I was learning, was more of an art than a science in cases like mine.
Dr. Holland sighed, looking very tired all of a sudden. “We have a long, difficult road ahead. Leukemia is a young doctor’s disease and I won’t be able to handle your case alone. I’m assigning Dr. Navada and Dr. Silverman to help with your care,” he said, gesturing to his colleagues. “Together, we’ll work as a team to make sure you receive the very best treatment. We promise to do everything we can to help you make it to the other side.”
Later that night, I lay in the dark, not sleeping. It was three in the morning and Will was snoring lightly beside me. I opened my laptop and began to read up on the bone marrow transplant process, as well as the chemo regimen I was slated to start in a few days. There, on the list of side effects, sandwiched between vomiting, hair loss, heart damage, and organ failure, I saw something that upset me more than any of the bad news I’d received so far: The cancer treatment that could save my life would also most likely leave me infertile. Since my diagnosis, I had felt relief, followed by shock, confusion, and horror. And now, something else: a wrenching sense of foreclosing.
* * *
—
Cancer is an emergency, and oncologists are the first responders: They are trained to beat it, and everything else must take a backseat. But no one on my medical team, as the treatment plan was drawn up, had mentioned infertility as a potential side effect. It was only after I asked about infertility at our appointment the next day that my oncologists told me about the available options: I could undergo fertility preservation treatments, freezing either my eggs or embryos. Depending on where I was in my menstrual cycle, this could take several weeks, and I would have to delay chemo, which they strongly advised against. But ultimately the choice was mine.
As much as I appreciated their support, the absence of communication on something so important felt like a breach of trust early on in our patient-doctor relationship. Most patients afflicted with my type of leukemia were long past their childbearing years. While my medical team was intent on saving my life, preserving my chance to be a mother someday hadn’t seemed to be on their radar. It was my first indication that, no matter how brilliant and compassionate my doctors might be, I would have to be proactive and learn to advocate for myself.
At twenty-two years old, the most thought I’d ever given to motherhood was how not to become a mother before I was ready. The few times I’d had reason to buy a pregnancy test in college, I remembered the rush of relief I’d felt, sitting in my dorm room, as only one line, not two, appeared on the stick. But now, as I considered the possibility of never being able to have my own children, my throat tightened with grief. I had always secretly thought that if I did get pregnant when I was older it would happen the way it had for my mother: organically and unplanned, but a welcome surprise. No longer.
After the appointment with my oncologists, I walked with my family and Will to a nearby restaurant for lunch. Everywhere I looked, the sidewalks seemed to be teeming with pregnant women, young mothers wheeling around newborns in prams and children in school uniforms skipping and singing as they walked home. Watching them, I felt a wave of yearning, some primordial part of me rising up. While I still wasn’t sure if I wanted kids, I knew in this moment that I wanted to do everything in my power to keep this option open for my future self.
* * *
—
The family minivan idled at the intersection of Fifty-ninth and York. Will swabbed my midriff with alcohol as he steadied the needle. My parents looked on from the front seat, quietly studying the young man they had known for a little over two weeks. The needle was filled with gonadotropin, a ho
rmone that stimulates the ovaries to produce eggs. A nurse at the fertility clinic had taught us how to administer the injections on a flesh-colored cushion. Because I was terrified of needles, either Will or my mother had helped administer the shots each morning and night for the past ten days, pinching the skin on my abdomen, injecting it with the vials of medication. Here at the end of our drive from Saratoga to Manhattan, Will was taking his turn.
Traffic was at a standstill, and we were late for my last appointment at the fertility clinic. The atmosphere was tense. As soon as the fertility treatments were done, I would have to enter the hospital and begin chemo, and I wouldn’t be able to return home for several weeks. The evening before, I sat at the table in my parents’ backyard as my dad cooked calamari on the grill with a spicy, harissa-infused sauce, his childhood favorite. My mom lit candles and Will helped set the table. I should have been savoring my last days of freedom, but I was agitated from the fertility drugs. They made me moody and bloated, the waistband of my jeans straining against my bruised stomach. I looked across the table at Will. We had only been together for six months, but there we were with my parents, discussing the pros and cons of freezing embryos versus freezing only my eggs. By every objective measure, it was awkward territory.
“I’m putting my life at risk by delaying the chemo,” I said. “I’ve committed to doing this fertility thing, so I think I should go the embryo route since it’s got a greater chance of success.”
“But to make embryos, you need…sperm,” my mother said, her Swiss accent wrapping strangely around the word.
“I was thinking I could get a donor, like, from a sperm bank.”
“Really?” she asked. “You wouldn’t necessarily know who the donor is, what he’s like, where he’s from, what his family medical history might—”
Between Two Kingdoms Page 6
