Between Two Kingdoms

by Suleika Jaouad

  * * *

  —

  We formed a motley cancer crew, one that only grew as the months passed. There was Kaylin, the punk-rock fashion designer with sleeves of tattoos, who also had Ewing sarcoma and, when she couldn’t find a place to live, moved into Melissa’s apartment in Brooklyn and became her roommate; Kristen, who had lymphoma and owned a small skateboard shop in the West Village; Erika, a graduate student in the Food Studies program at NYU, with breast cancer, who had a quirky sense of humor and always came to our hangs with gourmet snacks; and Anjali, an immigrant from India with my same diagnosis, who had a caustic attitude, swore constantly, and was infamous for having once made a nurse cry. I’d met Anjali in the waiting room of the outpatient bone marrow clinic. She was in her late thirties, pretty, with tawny skin and a beaked nose like mine, and always dressed in the requisite patient uniform: a knit ski cap pulled over her bald head and a face mask slapped across hollowed cheeks. The first time we saw each other, she’d nodded at me and I’d nodded back, both of us acknowledging the rare sighting: a fellow young woman in an ocean of wrinkled white faces. “So tired of looking at old farts,” she’d told me, rolling her eyes at the other patients, and like that we became friends. Anjali’s brother, her best potential match for a donor, had never returned her calls. Her transplant had failed.

  Within the crew, we devised an unofficial buddy system. We accompanied each other to chemo and compared treatment notes. Watched soap opera marathons when we were too tired to chat and played Words with Friends when insomnia hijacked our nights. Showed up at each other’s doorsteps with takeout and Xanax when someone got bad medical news. Took each other shopping when our clothing no longer fit our changing bodies and picked up the phone in the middle of the night when the anxiety attacks struck. Eventually, we would hold hospice vigils and help plan memorials. But we didn’t know this yet.

  * * *

  —

  Shortly after all of us started hanging out, I was invited to speak at a young adult cancer conference in Las Vegas, and I proposed we make a girls’ trip out of it. Anjali wasn’t well enough to come, but the rest of us—Melissa, Kaylin, Erika, Kristen, and I—had gotten the green light from our doctors, and we boarded a plane early one Friday morning, armed with face masks and a Tupperware of pot brownies.

  The lobby of the Palms Resort in downtown Vegas had gaudy chandeliers, pleather couches, wall-to-wall red carpet that reeked of smoke, and dozens of slot machines. When we checked in at the front desk, the receptionist told us that we’d been upgraded—to the penthouse. Unable to believe our luck, we rode the elevator to the top floor and flung open the doors to the suite to find two huge rooms with floor-to-ceiling windows overlooking the city, all lit up and strobing with flashing billboards. In the living room was a glass shower outfitted with a stripper pole that we took turns twirling around, howling with laughter until our ribs ached. We unpacked our suitcases, and the coffee table was soon covered in wigs. On the bar, we lined up all of our medications like shot glasses; between the five of us, we had more than a hundred pill bottles.

  We spent most of that day at the pool, then went to a tattoo parlor called Precious Slut. Since her diagnosis, Melissa had gotten dozens of tattoos. It was a trend I’d noticed among young cancer patients: a desire to stake a claim to your body and to take control, to make of it a canvas of your own design. In a nod to our weekend in Vegas—to the strange circumstances that had brought us together—Melissa and Kaylin got matching spades on their forearms and begged us to join them. Erika already had a tattoo, a Chinese character she’d gotten as a teenager on her lower back and now fiercely regretted, claiming that with time and gravity it had migrated halfway down her ass. Kristen wasn’t an ink girl and though I was tempted, I was still too immunocompromised.

  Later that night, back at the hotel, we ordered champagne and a couple of pizzas, and curled up like cats on the white couches in the living room. We talked into the wee hours about everything from post-chemo hairstyling tips and fears of relapse to the hot young chef from New Zealand whom Erika had met on an online dating site. “I wanted to get laid one more time before they lop off my boobs,” said Erika, who was scheduled to have a double mastectomy in the next few weeks. She had kept her wig on during her night with the chef and hadn’t told him she was sick, though she’d caught him eyeing the Livestrong bracelet on her wrist once or twice. Over the next week, they’d texted back and forth, but Erika didn’t know how to proceed without telling him the truth. She pulled out her phone and began reading the text she had sent him out loud: “Hi, this is probably the worst text you’ll ever receive in your life, but I feel like I need to tell you, because I think you might actually like me. I have cancer and the real reason I can’t see you this week is because I am doing chemotherapy. I’m so sorry. Please don’t feel obligated to even respond!”

  We all leaned in, breathless. “What’d he say?” Kaylin asked.

  “Nothing,” Erika told us. “But an hour later I heard a knock on my door. It was a bouquet delivery, these beautiful artisanal flowers from a shop on my street that I love. I opened the card and it said: ‘Doesn’t change a thing. XOXO, Mike.’ ”

  “Okay, so obviously this guy is a keeper. But what we really want to know is, how was the sex?” Kristen asked.

  Erika sighed. “Honestly? Best of my life.”

  “Jealous,” I blurted out.

  “But you and Will are the perfect couple,” Melissa insisted. “You two are the only reason I still believe in love.”

  The truth of what was happening with Will—the tension and the growing distance, the frustration and resentment—was something I couldn’t fully admit to myself. So instead of sharing all this with these women, to whom I could talk about almost anything, I simply shrugged.

  * * *

  —

  Sex had always been a big part of my relationship with Will, even after my diagnosis. If anything, illness had intensified our passion, filling us with a weird lusty hunger for each other. We had made a careful study out of how to fuck in a hospital room without getting caught, though our tactics weren’t always foolproof. (At Mount Sinai, we’d been caught more than once by the nurses who took to knocking loudly on my hospital room door and asking, “Everybody clothed?” before entering.) But things had changed in recent months.

  Our first attempt at intimacy since the transplant had happened late one night while we were still at the Hope Lodge. Will had returned from a college reunion downtown and he’d climbed into my twin bed, kissing me. I had lost all bodily desire since the transplant—to eat, to move, to touch, or to be touched. My skin was raw and tender, and the steroids I was prescribed to treat the GVHD left me feeling bloated and irritable. I felt uncomfortable and nauseated all the time, and also guilty about how unavailable I’d been. That’s why I didn’t say no when he slid on top of me. I wanted things to be normal again—but they weren’t. My brain blurred with pain. It felt like my insides were cleaving and ripping and tearing. I cried out again and again, but Will mistook my cries for pleasure and I didn’t correct him. I wanted to act the part of a girlfriend; to give him this, when I had so little else left to give. Afterward, I went to the bathroom and locked the door. I sat in there for a long time, long enough that the blood coating the insides of my thighs had dried.

  I couldn’t understand what was happening to my body. I didn’t know why my skin would suddenly burn up, hot as a kettle, making me tear off the blankets in the middle of the night and dunk my head under a faucet of cold water. I didn’t know how to control my moods, which swung and swirled, making me shout from frustration one minute and leaving me euphoric the next. I didn’t know why I’d suddenly tear up while I was waiting in line at the grocery store or sitting in the dog park. Since Will and I moved into the East Village apartment and started sharing a bed again, I’d become an expert in avoidance—turning my back to him at night, mumbling excuses about being
too tired, or pretending to be asleep. On the rare occasions when we were intimate, I turned into the kind of woman who focuses her eyes on a crack in the ceiling and vacates her body, waiting for it to be over.

  No one on my medical team had ever broached the topic of sexual health and cancer during my treatment. No one warned me that menopause is a common side effect of the treatment I had undergone. No one advised me about the available remedies to help with the hot flashes and pain. I had waited for my period to return after the transplant; it never came. At the age of twenty-four, menopause wasn’t even a word in my vocabulary. In turn, I’d kept quiet about the changes in my body, believing that something must be wrong with me. I’d told no one about what I was experiencing—not my medical team, not Will, not my mother, not anyone—until now.

  On our last evening in Vegas, my throat tightened as I began to confide in my friends. I told them about the pain that night at the Hope Lodge, and about the frustration and confusion I’d felt afterward. To my surprise, Melissa and Kaylin chimed in, saying that sex had also become painful for them and that they wondered if it was a side effect of the pelvic radiation they’d received. Kristen said that since finishing chemo, it was so excruciating, she simply couldn’t do it. Erika talked about her oncologist’s visible discomfort when she’d asked him about safe birth control methods. “I felt like I was having a conversation with my uncle,” she told us. So, after her tryst with the chef, she’d turned to the Internet to find out if it was safe for her to take a morning-after pill.

  That night, we were just a group of young women who had received little to no information about the sexual side effects of our disease, trying to puzzle it out together. I cried afterward, overcome by an odd combination of emotions: heartbreak over our shared loss and profound relief—even joy—about breaking through the silence, the shame of it all, together.

  21

  HOURGLASS

  TIME IS BOTH slow and slippery when you’re sick, when your days are consumed with the task of caring for the ever-breaking machinery of the body. Though all you want is more time to live, you pray for the pain meds to take effect quickly, for night to come soon, but the minutes and hours inch forward, taking their sweet damn time. Then the bigger increments of time—the weeks and months of suffering—whiz past in a blur of doctors’ appointments, transfusions, and trips to the emergency room.

  This paradox was especially true in the autumn of 2013. Somehow, an entire year had passed since I’d started the maintenance chemo after the transplant, and on a Friday morning, I prepared for what I thought would be my last day of treatment. I dressed up for the occasion and chose a cotton sundress with a floral print that matched my mood—airy, bright, hopeful. It showed off my tan from a recent trip with some friends to the Long Island shore, an early—if somewhat premature—celebration of the day. En route to the hospital, I sat alone in a row of blue plastic seats on the M15 express bus, content to daydream. Leaning my cheek against the glass, I studied the bustle of traffic swarming First Avenue.

  When I arrived at Sloan Kettering, I was on time, for once. Seated on the exam table, legs dangling over the edge, I pulled down the strap of my dress to reveal my port, a small hockey-puck-shaped object lodged under the skin between my right collarbone and my right breast. I winced as the nurse inserted a needle into it, connecting me to the IV bag of chemo. When she flushed the line I could taste the hit of saline in the back of my throat, briny and comforting in its familiarity. Then she hung the bag on the pole and adjusted the valve on the tubing until she hit the right drip-to-minute ratio.

  “How are you feeling today?” she asked. She had pink-glossed lips, a blond messy bun, and a face like a sugar cookie—pale, round, sweet.

  “I can’t believe this is it,” I said. “Do I get to ring a bell? Or is there some kind of diploma for being done with chemo?”

  The nurse squinted at me, her forehead crinkling in confusion. “Dr. Castro didn’t tell you?”

  “Tell me what?”

  “Oh,” she said. “He talked it over with the rest of the transplant team. Based on new guidelines and research, they think you should do another nine months of the chemo—just to be on the safe side.”

  “Another nine months?”

  This was not a novel feeling: my sense of safety being demolished in the amount of time it takes to utter a sentence. You have leukemia. The treatments are not working. You need a transplant. You need more chemo. Words had been my salvation since I’d started writing the column, and I had almost forgotten how much they could hurt; how they could so easily destroy your plans for the future, for a life. The tears came reflexively, hot and fast, in sheets down my cheeks. “Can I talk to Dr. Castro?”

  “He’s not in today,” replied the nurse. She handed me a box of tissues and apologized again about the mix-up. I told her not to worry. It wasn’t her fault, it wasn’t anyone’s fault—or, if it was, it didn’t matter. There was never any question that I would agree to the extra chemo—I had come this far, and I would continue doing whatever was needed to survive. “See you in three weeks,” I said when the infusion was finished.

  Later that night, I worked up the courage to tell Will what had happened at the hospital, then searched his face for clues to see how he was taking the news. Another nine months of doctors’ appointments, medical bills, and debilitating exhaustion. Another nine months of his life being derailed by my health. We got into bed and Will murmured all the right words of support. He told me how sorry he was, that it was okay to be angry. He kissed my face and gently wiped my cheeks with his palms when the tears came again. These kindnesses meant everything, but it was difficult for me to know how he really felt. Will was as opaque as I was prone to emotional outbursts. If he was pissed off or sad or disappointed, I almost never found out until after the fact. When he fell asleep, I watched him, wondering what was happening behind those hooded, blue eyes.

  * * *

  —

  A week later, Will sat me down in the living room and told me he was leaving for California. The plan was for him to take a break—a longer one this time so that he could recharge and spend time with his parents, whom he hadn’t seen in a while. He would work remotely from their home in Santa Barbara. A month—maybe two, tops. Plus, I could visit, he added. Maybe we could even go on that California road trip I’d been fantasizing about. “Couples take space all the time,” he said. “I think this could be really good for us.”

  I stared at him slack-jawed. The plan sounded so simple and straightforward when he laid it out like that—and in the alternate universe where we were a normal couple, it could have been. But that wasn’t our reality. We were boyfriend and girlfriend, but also caregiver and patient. I resented him for forcing me to spell this out—for making me list all the ways in which I was dependent on him.

  The list included the renovations on our apartment kitchen that were about to begin—renovations that I would suddenly be left to handle without him. The help I needed when I was sick. Walking the dog, grocery shopping, cooking, picking up prescriptions from the pharmacy, midnight trips to urgent care, and on and on. Our tiny apartment was three and a half hours away from my parents, and with no spare bedroom for them, they couldn’t stay comfortably for longer than a few nights. I would have to move back into my childhood bedroom in Saratoga while Will was gone—something I had no desire to do—or to manage here on my own.

  “Are you leaving because I have to do more chemo?” I asked.

  “Of course not,” he snapped. “How could you say that? I’ve sacrificed everything for you.”

  Immediately I felt guilty. He was right about the sacrifices, of course, but still, I wanted to know: “Then why are you leaving?”

  “I need to focus on myself. I’m not happy, and I’m not where I want to be professionally. I spend all day editing other people’s work, helping them make their dreams come true, and then I come home and I
take care of you.”

  “But why can’t you work on yourself here?” I said. “I can help.”

  “Between your cancer treatment and your career, you take up a lot of space in this relationship.”

  There was truth to Will’s words. Over the last year, the popularity of the column had led to magazine profiles and television appearances, followed by some speaking engagements. In a surreal twist, I’d even won a News & Documentary Emmy Award for the video series that accompanied the column. Attending the glitzy ceremony at Lincoln Center, I felt equally excited and out of place, with my cheeks swollen from the steroids and my hair in a quarter-inch crop. Each time an opportunity had appeared, I had said yes, wanting to seize the momentum while it was there, while I could. But raw willpower and ambition can only carry you so far. I was folding under the workload and everyone in my life—my family and friends, Will, my doctors—was worried about the toll it took on my health.

  From day one, Will had offered his support, and I’d gratefully—in retrospect, too eagerly—accepted it. He’d pulled countless all-nighters to read and to revise drafts, helped me negotiate contracts, and prepped me for interviews. The first time I was invited to deliver a keynote at a medical conference in Atlanta, he used his vacation days to come with me, since I was still too sick to travel alone. He pushed my wheelchair through airport security lines, carried our bags, and took care of me when I caught a virus on the plane. The added income had allowed us to live more comfortably, and I split what I earned with him, insisting that he deserved to be compensated since there was no way I could have done any of it without him. But what had begun as a labor of love had also just become a whole lot of labor. In recent weeks, I’d tried making myself smaller, asking for less, saying less, and encouraging him to focus on his own creative projects, but it didn’t seem to matter. I couldn’t help feeling like I was always using up too much oxygen in the room. Until now, I had never heard Will confirm this out loud.