* * *
—
It’s a funny thing, coming home. Everything smells the same, looks the same, feels the same, but you are different; the contrast between who you were when you left and who you are now is heightened against the backdrop of old haunts. When we pulled up to the house, where my family had lived since I was twelve, my mom was standing out front, tending to the garden. She opened the van’s door and helped me to my feet. “Mon dieu,” she said, hand over mouth, when she got a good look at me. “Why didn’t you tell me it was this bad?”
“It’s a new ‘heroin-chic’ look I’m trying,” I replied. My mom, whose deranged sense of humor I could usually count on, did not laugh.
“You haven’t seen the worst of it,” my dad said. “Sus, show her your mouth.”
I pulled down my bottom lip, wincing as I exposed three new sores, milky full moons, round and swollen, that had cropped up during the flight. My parents exchanged a look I couldn’t decipher.
Shuffling into the house, I went straight up the front stairs and into my bedroom, my shoulders sagging with relief as I inhaled the familiar scent of dusty books and spied the yellowing poster of the legendary Tunisian singer Ali Riahi tacked to the wall. I sprawled onto the bed, a heavy sleep pinning me to the mattress. Hours passed and I woke up to the sound of the Swiss cowbell that my mother rang to call everyone down for dinner—a nod to her roots, and a source of profound irritation to my brother and me. I stoppered my ears, trying to fall back asleep. When I didn’t answer, my dad appeared, knocking at my door.
“Labess?” he asked, Tunisian slang for What’s going on?
“Not hungry,” I groaned, pulling the pillow over my head.
“It’s been months since we’ve seen you. At least come sit with us for a bit.”
“I’m too tired,” I said.
“You’ve been sleeping for hours. You need to make more of an effort. You’ll feel better once you’re up. Come on, let’s eat and go for a walk around the block.”
“Hédi. Please.”
I lay motionless for a while after my father gave up and left, a mixture of guilt and doubt preventing me from falling back asleep. I knew something was wrong, but there were still moments when I wondered if I was making it all up—if my symptoms were real or only in my head. Maybe I did just need to make more of an effort.
I got out of bed and made my way to the landing at the top of the staircase. The steps seemed to go on forever as I slogged down, my limbs heavy containers filled with cement. When I reached the bottom, I was so depleted I sank to the oak floor and tried to regain my strength. I could hear the sound of my parents’ voices in the kitchen. I cocked an ear, the old childhood instinct to eavesdrop too tempting to resist.
“I let her buy a return ticket to Paris for two weeks from now, but I doubt she’ll be well enough to go,” my mom said. “Not anytime soon.”
“What do you think of when you hear the symptoms: mouth sores, weight loss, frequent infections, and low blood counts?” asked my dad.
My mom was silent.
“HIV,” he said, sounding like he had given this some thought. “I know the test results came back negative, but I read online that it can take several months for the virus to show up. Did you see how much she and her friends were drinking at graduation? And that was in front of us. Who knows what she’s been up to when we’re not there. She could be sleeping around or using drugs, for all we know.”
My face was on fire. A bolt of adrenaline shot to my chest, and I ran up the stairs, pulse racing, trembling hands slamming my bedroom door shut. I was furious at my father for speculating about the state of my health and my character behind my back. I felt a deep shame, too. He wasn’t entirely mistaken; my life away from home had involved some of the things he feared. But what rattled me most was that my father, who always fronted as tough, sounded scared for me. It was becoming harder to believe the line I’d been fed since I was a kid: Everything is going to be all right.
6
BIFURCATION
A WEEK HAD passed since my return home. I remember only dimly how I spent the time. I went to a flurry of doctors’ appointments, I slept a lot, and I skyped with Will. I reluctantly dragged myself out for walks around the block with my parents. But what I remember most is the anxious hush that had fallen over the household; the worry that filled the air; the mounting fear and frustration I felt as I waited for clarity.
Today was Easter, but I ruined it, I wrote in my journal. Anne spent 6 hours preparing an incredible meal for dad and me. Not only did I eat nothing, but all I could do was stare glumly at the two of them. On Wednesday I am scheduled to have a bone marrow biopsy and I am dreading it.
* * *
—
“Precautionary” was the word the doctor used when he suggested the biopsy. It was a torturous, humiliating procedure that entailed lying facedown on an examining room table with my jeans around my ankles. The doctor cleaned my lower back with Betadine as he explained that the pelvic bone, rich in marrow, was the preferred location for the biopsy. He injected lidocaine into my lower back, plunging the needle deeper and deeper until it struck bone. Although the surface layers of my skin were numb, it would still hurt, the doctor warned. I gritted my teeth as he slid a thin syringe into the bone and aspirated the marrow cells with quick nauseating sucks. Next came a much bigger needle—ten inches of gleaming stainless steel—with a plastic handle at the top that he would use to drill deeper into the marrow. My bones were young and strong, the doctor said, as he put one shoe up on the exam table, grunting as he bore down into my pelvic bone. As he clipped off a small, solid chunk of marrow, I bit the inside of my cheek, tasting blood. Once the procedure was over, I sat there dazed with a big bandage covering the biopsy site, my back throbbing. The doctor reassured me that he didn’t expect to find anything abnormal, but given my worsening condition, he wanted to take every precaution.
* * *
—
A week later, on May 3, 2011, we received a message on the answering machine. The preliminary results of the biopsy were in, and the doctor wanted us to come in as soon as possible. By the time my parents and I arrived at the clinic, the staff and the other patients had gone home for the day. It was after hours and the lights in the office had been dimmed, casting shadows across the stacks of magazines and pea-green walls. The doctor came out to meet us in the waiting room and sat down. He didn’t mince words. “The biopsy confirmed what I suspected but hoped wouldn’t be the case. You have something called acute myeloid leukemia.” He enunciated the diagnosis slowly, like a foreign-language instructor teaching us a new vocabulary word.
I didn’t know what it meant, but I could tell it wasn’t good. I averted my eyes from my parents’ devastated faces. Frozen in my chair, I repeated the diagnosis over and over in my head. Loo-kee-mee-ah. Loo-kee-mee-ah. Loo-kee-mee-ah. It sounded like an exotic flower, beautiful and poisonous.
“It’s an aggressive form of cancer that attacks the blood and bone marrow,” the doctor said, his shoulders drooping a little beneath his lab coat. “We’ll need to act fast.”
How do you react to a cancer diagnosis at age twenty-two?
Do you break down in sobs?
Do you faint, or scream?
In that moment, a feeling flooded through my body, unexpected and perverse: relief. After the bewildering months of misdiagnosis, I finally had an explanation for my itch, for my mouth sores, for my unraveling. I wasn’t a hypochondriac, after all, making up symptoms. My fatigue was not evidence of partying too hard or an inability to cut it in the real world, but something concrete, something utterable that I could wrap my tongue around.
Everything the doctor said after—that the situation was grave and that I would need to begin treatment right away—faded into a distant hum. Instead, it felt as if he were standing over me with a scalpel, cleaving my life by diagnosis,
bifurcating my psyche into separate selves: half of me dancing with a mariachi singer after tequila shots at Don Juan, a bar in Paris, making my friends whistle and cheer; half of me crying every night in a sterile hospital room after the visitors had gone home.
The diagnosis had formed an irreparable fracture: my life before, and after.
7
FALLOUT
A FAMILY OF public criers we are not. When we got home that night, my mom retreated to her studio and closed the door; I locked myself in my bedroom, curled into a fetal ball, and pulled the covers over my head; my dad went for a long walk in the woods near our house, returning several hours later with bloodshot eyes. My brother, Adam, a junior in college, was studying abroad in Argentina, and my parents and I decided to spare him the news of my diagnosis until we knew more about what my treatment would entail. As for my friends, they had no idea that I’d been unwell, or that I was back in the United States; they were still posting on my Facebook wall asking if they could visit me in Paris.
Lying on my bed, I felt an impulse to share my terrible news. If I said it out loud, I thought it might begin to feel real. I picked up the phone and rang Jake, one of my closest college friends. I wanted practice before I tried to find the right words for Will, and I trusted that Jake would understand—but to this day, I’ve never heard anyone get off the phone so fast. He apologized, telling me he wished he could talk longer but he had plans. He promised to call back later that night. He didn’t. I wouldn’t hear from him for many weeks. It was my first indication that cancer is uncomfortable for the people around you, and that when people don’t know what to say, they often say nothing at all.
Before I lost what was left of my courage, I dialed Will. We were still in the early stages of our relationship. What did I expect? That he would drop everything and move again—that he would come here, to Saratoga, and live with me and my parents, whom he’d never even met? As the phone rang, I steeled myself with deep, gulping breaths. “The biopsy results came back. I have something called acute myeloid leukemia,” I told him, my voice hoarse. “I have no idea what’s going to happen. I know you didn’t sign up for this.”
I went on to explain what little I knew about my diagnosis and that I wouldn’t be returning to Paris anytime soon. Home, for the foreseeable future, would be my childhood bedroom until I entered the hospital to begin chemotherapy. A second passed, maybe two, but the silence seemed like an eternity. I heard footsteps and the sound of a cupboard banging shut. It was morning in Paris, and I pictured him pacing around our apartment, with bed head and a cup of coffee in his hand. “I’m catching the first flight to New York,” he said. “I’m on my way to the airport right now.” It was only then that I began to cry.
* * *
—
Cancer is great gossip. Within twenty-four hours, word of my diagnosis swept through our small town like a fire through sagebrush. The light on the answering machine at my parents’ house was blinking red: at full capacity. A message from a neighbor asking if the news was true and if so, how they could help. Another, from a childhood friend whom I hadn’t seen in more than a decade, offering to visit. A colleague of my father’s telling us that she would drop off a pot of chili for dinner. And confirmation from a man my family would come to call “the Cancer Guru” about an appointment that we had forgotten all about.
We had scheduled the appointment a few days before my diagnosis, because an acquaintance of my mother’s from yoga said he was good at cracking medical mysteries. “Maybe he can offer some supplements to help you feel a little better,” my mother said. It sounded reasonable. When my brother and I were growing up, she had taught us that fast food, soda, and sugary cereal were poison. The health food store, the acupuncturist, the Chinese herbalist, and the homeopath were always our first stops—a regular doctor’s office was a last resort. As a kid, I had found my mother’s obsession with health embarrassing. (On Halloween, she was the lady on the block who handed out unshelled peanuts, apples, and number two pencils instead of candy.) But over the years, I absorbed her commitment to alternative medicine and all things organic, and ultimately I came to see value in it.
A few hours later, I sat in the passenger’s seat as my mother drove, watching the landmarks of my childhood blur past—the main drag of downtown Saratoga where I’d busked for crumpled dollar bills as a teenager, the used bookstore where I’d had my first kiss, the elementary school where I’d arrived as a kindergartner who didn’t speak a word of English. We drove on, down two-lane country roads, until we arrived, forty-five minutes later, at a small, wooded trailer park on the outskirts of a town I had never heard of before. We pulled up to a double-wide, the grass littered with lawn ornaments, got out of the car, and knocked on the door.
A man with yellowish hair and a ponderous gut that draped over his blue jeans answered. My mother immediately shared with him the news of my diagnosis. Before I could take off my jacket, he clamped a meaty hand around my arm and leaned in, close enough that I could feel his dank breath on my cheek. “Before we begin, I want to make one thing very clear,” he said, peering deep into my pupils. “You will die if you go forward with any traditional chemotherapy treatments.”
The Cancer Guru explained that he would use a muscle-testing technique to get a clearer picture of what was going on. It entailed putting drops of various flower extracts onto my tongue and then assessing my body’s strength in response. For the next hour, I stood like a scarecrow in the living room of the trailer, exchanging bewildered looks with my mother, as the Cancer Guru pushed down on my outstretched arms, fiddled with hundreds of little glass vials, and scribbled notes onto a piece of paper.
“You can sit now,” he said finally. Exhausted, I sank into the couch next to my mother, both of us eager for the appointment to be over. But the Cancer Guru was just warming up. “I have good news and I have bad news,” he told my mother. “The bad news is that your daughter does in fact have leukemia.” He said it solemnly, as though there had been some doubt on the subject before. “The good news is that I can cure her.”
The Cancer Guru then began to preach, stomping his feet and waving his hands for emphasis, like some coke-addled televangelist. Over the next hour and a half, he bombarded us with tale after tale of cancer patients who had ignored his advice and gone to the hospital for their treatments. “They never left!” he shouted in a thunderous voice. “They died agonizing, chemotherapy-induced deaths! Do you want that to happen to you? Do you?”
I wish I could say that my mother and I cut off the Cancer Guru—that we told him just where to put those glass vials of flower extract. But being afraid for your life can scramble the senses, can turn your tongue to chalk. As the Cancer Guru continued to hurl his theories at us, my mother and I shrank into the stained paisley pillows of the couch. It was only when he ushered us into the tiny kitchen at the front of the trailer and attempted to draw my blood with unwashed hands that my mother dropped her fist on the table, and said, in a trembling voice, “I think it’s time for us to go.” We put on our coats and left, but only after he pressured us into buying two hundred dollars’ worth of vitamin supplements and several gallons of aloe vera juice on our way out.
On the drive home, my mom and I sat in stunned silence. “I can’t believe I put you through that,” she said. “I feel like the worst mother in the world. I’m so sorry, so, so sorry—”
Later I would come to see this incident—and so many others along the surreal journey of contending with cancer—as darkly comic. But in the moment, I was weighted heavily with a sense of responsibility. It had only been forty-eight hours, but already my diagnosis had overturned our lives, yanking us all through a trapdoor into this strange, confusing land.
So before my mother could finish, I cut in. “It’s my fault. I’m the one who got us into this whole mess in the first place.”
* * *
—
Back home, in the saf
ety of my bedroom, I turned full investigative reporter. After twenty minutes of Internet sleuthing, I discovered that the Cancer Guru was not in fact a trained kinesiologist, as he had claimed, but a veterinarian. A decade earlier, he had been arraigned on a seventy-one-count indictment for unlicensed practice of medicine and dentistry on the wrong species: humans. One of the charges detailed how he had used dirty needles to inject patients with urine. These allegations followed an earlier investigation in 1995 that found him guilty of unauthorized medical practice after he advised a patient to drink three gallons of water and consume a hundred supplements a day, resulting in the woman being hospitalized.
Going forward, I vowed to learn everything I could about my diagnosis: burying my head in research journals, making a list of experts to interview, scouring every corner of the Internet for information. I needed to find a way to take control of what was happening to me, and I decided that the more I could glean about my disease, the greater my chances of survival. Knowledge is power, right? But as I dug into my new disease over the next few hours, I didn’t feel empowered. The statistics I stumbled across turned my blood to ice. The chill deepened as I learned that only one in four patients with my type of leukemia survived five years past diagnosis. I wondered if my parents knew this. I prayed they didn’t.
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