Heather Rumsey
Living in Fear of Your Body
The first time I thought I had cancer, I woke up with a lump on my neck. It was the size of an avocado, tender and firm, filling the space of my cupped hand as I ran to the mirror. Below my left ear was a giant mass. I took a deep breath, trying to stabilize my shaking hands. Don’t panic. Don’t panic. I sent a photo to my aunt Julie. Call me. She responded. I walked to her house. “You have a swollen lymph node!” she yelled as I approached the doorway. Her excitement depressed me.
She said the lymph node swelled because of a cavity. It was infected, and the bump was simply proof that my immune system was working. The dental office fit me in as an urgent case the next day. “So why are we seeing you today?” the dentist asked. I told him about the swollen lymph node. “Mind if I take a look?” He pulled back my hair, looking startled as the lump appeared. His eyes widened, every line in his forehead became visible. He started talking fast. “Whoa. You just woke up with this on your neck? I’ve never seen anything like this, there’s no way this is dental-related.” The room felt smaller, the sound of drills on teeth grew louder.
He rolled his chair back to look at the x-rays closer. His assistant stood beside me in blue scrubs, looking nervously around the room. I could hear the sound of her dry latex gloves rubbing as she squeezed one hand with the other. She was making me nervous. “You need to go to the ER or see a specialist right away.” My face burned with embarrassment. I couldn’t muster any words other than, “Oh, OK.” He brought up my chair. “I’ll prescribe you penicillin and that will help any infection in the tooth, but promise me you’ll get that looked at?” His concern was sincere, but the seriousness of it all scared me. “I promise,” I said. Outside I sat in my car trying to process the words I secluded from our conversation. Specialist? Emergency room?
Google, when it comes to lymph nodes, is quite intense. I went through a series of searches, and the results were harsh and discouraging.
Swollen lymph nodes
Abnormally large lymph nodes
Signs and symptoms of lymphoma
Survival rate of someone with lymphoma
I read survivor blogs, watched videos, researched living with cancer, and then determined how long I had to live.
The five-year survival rate for all people with Hodgkin lymphoma is 87%. If the cancer is found in its earliest stages, the five-year survival rate is 92%. If the cancer spreads regionally, the five-year survival rate is 94%. If the cancer has spread to different parts of the body, the five-year survival rate is 78%.
So I didn’t have long. It’s hard enough to with the inevitability of it all ending, but the thought of knowing when was unbearable. I’d lie on my couch, staring at the ceiling for hours, wondering what chemotherapy was like. My obsession with cancer made it impossible to enjoy daily life. I was associating it all with the misery I was feeling.
I was put on antibiotics and told the lump should respond within three days. In the middle of the night I’d feel my neck to see if it was gone. The sheets of my bed felt rough beneath my body as I tossed and turned. In the morning I’d run to the mirror to see if it shrunk, but the lump never changed. I was put on a higher dose of penicillin. Two hundred milligrams four times a day. I was sick to my stomach from the medicine. I couldn’t eat, I couldn’t sleep, and it was a constant battle to keep the medication down. I was on four different antibiotics for three weeks until we realized the lump would not respond to any of them. What we thought was a swollen lymph node was not. I have found that my body is the source of my deepest fears. Fear of death and illness and neglect. It is my only tangible form of being and it is out of my control.
I was dropped into an unfamiliar world of biopsies, CT scans, needles, and bloodwork. I’d come home from each appointment, my neck throbbing with pain, sharp and undissolving, deep and dull. It all depended on where the needle was that day. Each time I walked out of a biopsy appointment it was a painfully normal day. The world had not changed. People were driving to work, traffic lights turned from red to green, the city bus was making stops. Outside the sun grabbed my skin and the wind kissed my back, sending chills up my neck. I was thinking about the possibility of death. These thoughts would come and go, but it was on perfectly sunny days, when people were carrying groceries, sipping their coffees, and looking at their phones, that I knew despite my pain and suffering the world at large would go on. My life felt joyless, like something I no longer knew how to be a part of.
I never wanted anything more than the passing of time, but nothing would come back. Preliminaries that told us nothing. “All we know is that there’s no infection,” they’d say. The doctors were scrambling. “I’ve spent my life studying the areas from the throat up, and I’ve never seen anything like this,” one specialist said. I could feel their doubts and uncertainty. It was terrible. Every appointment I’d ask, “Do you think this is cancer?” And they’d respond with similar answers that were vague, careful not to bind them legally.
My friends didn’t understand. Their lives moved on with work, and drinks, and dinner parties. Sometimes they’d call to check in, but most of the time they didn’t. And when they did it was the same advice, “Stay positive, you don’t know that yet, it’s not cancer. You’re going to be OK.” Words that made me feel even more alone. It was painful to tell my mother. She was sure of herself in an unbelievable way. “You’ll be OK,” she said, but I knew she struggled to believe it. The fear in her voice was like a tuned guitar, love so deep that truth was sound coming from her body. I silenced my pain. I’d fall apart at night alone in my room, and wake up as if nothing had happened, as if everything inside of me was not burning.
I struggled to communicate the fear to the people I loved. Their attempt to cheer me up was like a stage act in which they all had the same script. I listened, said thank you, said I love you, but none of their advice helped, and I grew tired of the overcoming narrative they were pushing. It wasn’t positivity and good vibes. It wasn’t a shift in perspective or prayer. It was fear and anger and displacement. Eventually it all blended—the roundabout conversations with doctors, the phone calls with friends and family, the lymphoma survivors on YouTube—a combination of words and sounds in which I was hearing a lot of noise but receiving no message.
We hold on to illness after it’s gone. The pressure to heal, to present ourselves as overcomers, is why we hold things in, or at least it’s why I did. I didn’t want people to feel the burden of my pain and I couldn’t let go of cancer even when I found out I didn’t have it. The empathy that comes from others is not disingenuous. I believed in the swollen lymph node Julie diagnosed me with, and I felt the sincerity of my dentist when he told me to see a specialist, but I hope there’s a space within the experience of illness where we can forget about overcoming and lean towards sharing. A space that will attempt to remove the embarrassment and isolation that typically comes with being ill.
I was finally sent to an oncologist. “Hello,” he said, as he walked in the door. He reached for a box on the wall. I’d come to hate the sound of latex gloves stretching over dry hands. He pressed down on the lump with two fingers, sending a spark of pain through my left shoulder. I was used to this now, doctors pinching and poking in places that hurt. “Yep, that’s a cyst. What we call a branchial cleft cyst. They are pretty rare, but they can appear in young adults. We’ll put you under, remove it, and hopefully get cancer out of the way.” There was an emotional distance in him, likely a result of his occupation. People’s trauma was a part of his daily life. I learned the higher you go the less emotional doctors are. I had lost all hope that I could deliver myself through this.
Three weeks later, I was at Banner Hospital at 5:30 in the morning. The receptionist shouted names like a roll call. On the walls were photos of mountain sunsets twisted with purples and pinks, a saguaro cactus standing alone amongst the desert dust. Classical music played over the speakers; they were trying. A group of us stood in the waiting room dressed in sweatpants and baggy shirts, soon to be victims of a careful knife attack.
About the Author
Heather Rumsey is a writer from Tucson, Arizona. She is working on a novel about the shared humanity in illness. She believes the body and mind are unsolved mysteries and likes to write about it.