Taking Charge of My Story as a Cancer Patient at the Hospital Where I Work

She was in a car accident when she was nineteen and it changed her whole life. That’s the beginning of the bedtime story that my nurse told me three nights after the stroke. I’m a hard stick so she had plenty of time to tell the tale. As she searched my arms for more cooperative veins she immortalized herself: young and wild and carefree. Living her life up to the hilt right up until she got t-boned in that intersection. I imagined that she in her hospital bed must have looked an awful lot like me in mine: covered in wires and full of dread and feeling very small. “I was a mess,” she said. “Before. That accident was a blessing.” She held pressure, counted to ten. “Maybe this is too.” She looked at me like she could see into my future. I looked at her and I drooled. I coughed. I tried to call her a liar. My tongue didn’t work right and my brain didn’t work right so the words stuck right behind my teeth. As she buried my medications in flavorless applesauce, I pictured myself: lifeless arm and wounded throat and ruined mouth. A horror. It was hard to see divinity in that.

I was released from the hospital eight days after my second surgery, six days after my stroke, and started living the recovery lifestyle. Fatigue and daytime television. Therapy putty and pureed fruit. Every other day I went to therapy (physical, occupational, speech) or a follow up appointment (oncology, neurology, otolaryngology.) I spent an untold number of hours in waiting rooms. Time was distorted there; each room an almost but not quite replica of the one that I’d been in a day or two before. The year-old magazines, the clock with a broken second hand, and the television that played hospital announcements on a loop were disorienting. The people waiting there were always the same. Most of us were quiet, huddled over our cellphones, folded in upon ourselves. There was always, always a talker—the woman who was on her own cellphone loudly complaining about her husband, her children, or both. The man, obviously waiting to see someone about a hearing aid, who recapped the day’s news to his disinterested companions. There were war stories. Not the kind with bullets but bandages were involved just the same. Each person bearing the scars of their own battle with illness and injury. I distractedly thumbed through yellowed newspapers and listened to the tales told around me. Nutrition supplements and support groups. Relapses and rehabilitation. I learned as much through eavesdropping as therapy.

Contrary to what television tells you, working in a hospital can be quite boring. When the patients are stable, when things are slow, the white walls and the smell of bleach and the ceaseless drone of the alarms from the vents and the drips and the pagers become tiresome quickly. To cut the tedium, people talk. About the patients, about the job, about each other. Stories spread like wildfire.

When I returned to work I immediately realized that anonymity was impossible. I was a resident—a doctor in training—in a small program at the same center in which I had been hospitalized. I had started my third year of residency and had another three years of training ahead of me. I was working sixty to ninety hours a week. I spent my days in the clinic and my nights pouring over the latest medical texts. Then I got sick and things changed abruptly. On top of that, on top of the stroke, I had a rare kind of cancer. A better chance of winning the lottery than getting my kind of cancer. Being an “interesting” patient who also happened to be a trainee made me a morbid little celebrity. I was the topic of conversation at the nurses’ stations. My tumor headlined at oncology conference and morbidity and mortality review. I’d attempt to introduce myself to other physicians or to nurses and find out that they had already heard of me. Or worse, they’d taken care of me and I’d forgotten. My memory of the days bookending the stroke is hazy. There are moments that I will never recover. “I’d be surprised if you did remember me,” an otolaryngology resident told me. He’d found me in the cafeteria one afternoon and called to me. I was trying to decide between mashed potatoes and pudding—both soft, both safe to swallow, both exceedingly unsatisfying—when his cheery voice pulled me from my rumination. “You were kind of a mess.” He got the chicken. I got jealous. “You were so altered. You tried to kick me out of the room, do you remember? That’s when we called the code.” I shook my head. Forced a smile. Wiped the saliva that puddled at the downturned corner of my mouth. He chattered away and I trailed behind him, listening as he told me about myself.

It was hard to get used to my colleagues’ attempts at consolation. People seem to have an innate ability to say the worst possible things at exactly the wrong time where illness is concerned. You would think that people who work in healthcare would be different but they are, after all, still people. I had initially shared my diagnoses with my department out of necessity. Resident work schedules are planned up to a year in advance. There are patients to see, clinics to cover. Unexpected absences can be a logistical nightmare. I emailed my colleagues partly to tell them about my tumor and the surgery that I’d need to remove it and partly to apologize for the commotion that I’d cause. The condolences were comforting at first: before the first surgery and the complications. When I returned to work weeks after everything, this comfort became unbearable. Hugs were followed by probing questions about my head, my throat, my hand. My colleagues were, after all, still physicians. I was wounded and irritable. “Thoughts and prayers” wouldn’t fix the hole in my brain. “Everything happens for a reason” wasn’t a good enough reason for a malignancy. One well-meaning co-resident brought a cake to celebrate my return to work. I was partly touched and partly contemptuous. I felt broken. Stroked out, cancerous, and drained. That hardly seemed to be something worthy of celebration. I washed down mashed up cake with my thickened nutritional supplement drink and tried, unsuccessfully, to hide in the crowded room. My bosses beamed at me, spoke about how good I looked and how much I’d been through and how well I was taking everything. They asked me how I felt and I lied and said that I was fine. “I bet you’d feel a lot better if they just shut up about it,” came a whisper from behind me. I turned to see one of the interns looking at me conspiratorially. “It’s awful, right?” she said when everyone else had left. “I know they’re trying to help but sometimes you just want to be left alone. When I . . . ” She paused. She’d been sick a few months prior. Her story had been passed around the same as mine. “I just wish that everyone had let me talk about things when I felt like it, you know?”

*

It takes decades to become a doctor. For some of us, medicine is a calling as sacrosanct as ministry. For all of us, it is a commitment. We devote our youth to the study of disease. We learn physiology and pathology. We learn the science of medicine and the art of its practice. We commit to learning for a lifetime. None of this mattered when I was diagnosed. Medical school does not teach you how to be a patient. You can be taught how to stitch, how to hold the needle tight, how to make neat lines and pretty closures but the pull of the suture in your own skin, your own flesh, shows you more than an instructor ever could. I floundered as a new patient. I couldn’t match my training with my experience. The one thing I knew how to do, the only knowledge that seemed to translate, was to know how to work through my exhaustion. The days are long in residency: call starts before sunrise and ends sometime the next afternoon. You go for hours without sitting, eating, or urinating. You go a day, often longer, without sleep. You get used to it. I napped between pages and procedures. I drank obscene amounts of coffee. I phoned my sister after call. Told her about the night and the nurses. Shared each frustration and triumph. Storytelling was a balm. Besides that, it kept me awake enough to drive home. I relied on similar techniques at work after my illness.

You can get used to anything if you live with it for long enough. I settled into my new body, juggled roles old and new. Time passed and my bloodwork improved. My scans remained stable. I eased back into the call rotation and onto challenging services: pediatric intensive care and neonatal intensive care. It was physically, intellectually, and emotionally demanding but it was familiar. I knew who I was when I was at work. Eventually, unfailingly, my body would remind me that it was still healing. I trailed behind the rest of the team as we made rounds, limping and hiding it poorly. Saliva dribbled from my mouth as I presented a patient. I dozed off in morning report once, twice—startled awake when my attending called upon me. I went back to my old tricks. I mainlined energy drinks and thickened tea. I gave increasingly lengthy lectures to the students and the junior residents. In the late afternoon, when we were caught up on work, I would sit and chat with them instead. Eventually, unfailingly, an intern would notice my lopsided smile or remember the rumors they’d heard and their eyes would glitter with curiosity. So I told them.

None of this mattered when I was diagnosed. Medical school does not teach you how to be a patient. 

The more I talked about the cancer and the stroke, the more comfortable I became with my body. I stopped hiding my scar. I stopped cursing my hand, my mouth, my brain. Still, I was concerned about others’ perceptions of me. I had been laid bare before my friends, family, and what felt like the entire hospital. They’d seen me at my worst: intubated and restrained. Paralyzed. Sedated. Diseased. I tried to scrub those images from their memories and mine. I told stories, shiny and clean, and portrayed myself as new and improved though impaired. I choked on the worst of it: the anger, the sadness, and the isolation. All the while, I wanted nothing so much as to tell someone all of it, every ugly, frightening thing, and for them to see me, to know me, and to comfort me.

One afternoon, I was rambling about therapy (physical, occupational, speech) and barely noticed as my attending slipped into the room. There were hours to go before sign out and sleep and I hoped that my halfhearted storytelling would make time pass quickly. “How are you with movies?” My attending’s voice jolted me to attention. I paused and stared at him in confusion. “I had a hard time with movies,” he said. “After my stroke. They never made me cry before.” He painted pictures of himself as a young man, of his own stroke, of a life upended and then restarted. He went from physician to patient and back again. It was his story but I knew all the words. I was the only one I knew with my kind of cancer. I was the only one my age who’d had a stroke. I was the only one but then he spoke and I knew that I wasn’t alone. “It’s not movies,” I said. “It’s commercials.” He smiled.

People tell me things. It’s always been that way. If someone, nearly anyone, is around for long enough, they will inevitably tell me everything they know. Another attending noticed this once. She was trying to tell me about a patient or give me an order but caught herself halfway into a memory of her mother and summer mornings and June bugs. “It must be your face,” she said and looked at me curiously. “You look like you listen to me.” It was the first time that I’d heard something like that but it wouldn’t be the last. I learned how to put my listening face to practical use during medical school. All that you’re really doing when you interview a patient is asking them to tell you a story. All the patient really wants is for you to listen to them. That’s what we all want, isn’t it? It’s one of our most fundamental drives. To be seen. To be heard. To be understood.

I completed the first half of my training and moved on to a new program in a new city. I thought I could leave bad memories behind but the specter of illness is persistent. I was going to be a neurologist. I worried that someone somewhere would look at me in my white coat and see me and my mismatched hands and my crooked mouth and see me, injured and small, in my bed in the ICU. So I told them. I took my story into my hands, shared every piece of it. Used my voice. My words. I saw the girl in the white coat and I wanted to empower her. I saw the girl in the ICU and I wanted to protect her. And I saw the girl in recovery, exhausted and isolated. I remembered how it felt when her attending shared his story. That sense of community. That overwhelming relief. I saw that girl and I wanted to hold her. I wanted to let her know that she would be okay.

“I had a stroke,” I said. “I had cancer,” I said. The responses were usually the same. An awkward pause. Perhaps an apology. If I went a little further, if I gave more of myself, then something else would happen. “I get so tired now,” I said. “My mother was exhausted all the way through treatment,” my co-resident said. “I used to be ashamed of my scar,” I said. “So did I,” the nurse said. She lifted up her hair and she smiled at me. Ran her fingers across the pink, puckered scar that traveled up her spine. I reached up and brushed mine. I shared my stories. I received others in return. We were compelled, I think, to make this exchange. There were stories about injuries, about illness, about operations, about depression, and mourning, and love. We’d pause when we finished sharing. We’d sit comfortably in the silence. We didn’t have to explain how we felt.

She warned me that she might faint on me and then she introduced herself. “Pardon me?” I said and I stared at her. I am never not confused. I was sitting on the floor in the back of the hall as I waited for the lecture to start. I pulled the strings that poked from my scrubs, pushed my pager deep into my pocket, and looked up when she sat at my side. She was wearing her white coat: brand new, starched collar, polyester, stifling, and stiff. She wore a new badge, looked half excited, half nervous, and entirely overwhelmed. Sweat beaded at the edge of her brow. The air conditioning was always broken. It was too hot or too cold and I knew that because I’d been around for a while. “Hot in here,” I said and then she gave her warning. “I had a condition,” she said. “Oh yeah? Me too.” I gave her my best crooked smile. “A brain tumor,” she said and she crumpled a bit. She looked young and timid and small. “I had a stroke,” I said, “But cancer came first.” I turned my head to show off my scar. She brightened and showed me her own. I told her my story. She told me hers. I sat back. I listened. I understood.

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