I Had a Brain Tumor

but I’m fine now.

Everything begins somewhere.

A tremor in the left hand, slight muscle weakness, the inability to paint my own fingernails. I accepted these changes as subjects of fascination — idiosyncrasies particular to my body. When I told my mother, she suggested that I incorporate more vitamin C into my diet.

In winter of 2010, the snow piled up against the windows of my garden apartment while I vomited breakfast, then water, and finally a bitter yellow substance for an entire day until I was too weak to move to the bathroom anymore. I fell asleep on the floor wondering whether I would wake up the following day.

How sick do you have to be to call for an ambulance?’ I had texted my roommate who was away on holiday.

After that episode, I began to experience strange throbbing headaches — little lightning storms that I combated by closing my eyes and standing perfectly still until they receded. I lived alone then, an hour into the depths of Brooklyn, in an Italian neighborhood that I reluctantly cherished. I took dance classes five nights a week, unless I was attending a reading or a lecture or some party somewhere. Those were long days, late nights. I lived off coffee and dollar slices of pizza. My fridge held almost nothing but pickles and condiments.

Soon, the headaches joined forces with crippling vertigo. Little spots formed at the edges of my vision. Nausea overwhelmed me in the mornings. I was thin, but that was fashionable.

Once, when the headaches were frequent and fierce, I told my mother that I felt as though someone were pinching the back of my neck and squeezing my brain. I didn’t know it at the time — I wouldn’t find out for months — but I wasn’t wrong.

Near the end of October 2010, there was an early winter storm that swept through New England.  My co-worker, who had been tracking my complaints over the months, escorted me to a nearby clinic.

From there, things progressed quickly. I was given strict instructions to take a cab directly to the hospital. Do not walk, do not get on the train. I nodded dutifully as I continued throwing up into an H&M shopping bag. In the emergency room at Beth Israel, a nurse took me for a CT scan. I had never been in a hospital before. I waited for the results. A concerned attendant peeked through the door at me, then withdrew again. More concerned faces. Bad news, they intoned, without quite saying what was bad. I was admitted, decorated with IVs, and told to wait again. At one point, a young doctor said to me, “That’s quite the goober you’ve got in your noggin.” Goober? That was the first I’d heard of it. He showed me the scans.

When I think of tumors, I think of metaphors of invasion. Something foreign, forceful, and undesired. The growth of darkness where before there was light. The young doctor pointed to the screen and said, “There.” Therewas a shadow at the back of my mind. A sphere lodged against the cerebellum, a presence that was both alien and of myself. Not a tumor yet, but not not a tumor either. To confirm that either way required a series of MRIs.

From the emergency room, I was moved to the neuro step-down unit. That was serious, a friend informed me by text. An older doctor whose glasses sat at the tip of his nose and whose voice was firm but kindly throughout his explanation of the condition hemangioblastoma agreed that it was indeed serious.

At that age, I thought I had things figured out. I thought I was invincible. I could take another Advil. I could push through the headaches, the vertigo, the nausea. Everything was fine, I’d convinced myself, because everything was supposed to be fine. Sickness, tumors, brain surgery: those things happened to other people. The doctor asked to schedule the surgery immediately. I asked for a moment. For twenty minutes straight, I sobbed aloud at the edge of my hospital bed. I don’t want this, I can’t do it, I don’t want this. How did this happen? Why?

Hemangioblastoma are vascular tumors located in the cerebellum, brain stem, or spinal cord. Accounting for less than 2% of tumors in the central nervous system, hemangioblastoma typically affect middle-aged individuals and can be associated with Von Hippel-Lindau syndrome in which tumors recur continuously throughout a person’s lifetime. They are noncancerous, but can cause serious complications over time. As long as surgical excision is possible, prognoses tend to be positive.

To ask why or how,  I was diagnosed with a rare tumor known to affect an age range far beyond my own, is to commit my thoughts to a wheel of irrationality. I could turn the question over and over and never have an answer. From there on out, I moved as though in a dream.

I had to call my mother. Nothing could happen until I’d seen her in person. But when she answered, I couldn’t form the words. Handing the phone over, I asked the doctor to explain the problem. Three thousand miles away, a grown woman pulled over to the side of the road and cried, then purchased a plane ticket so that she could attend the imminent craniotomy of her frightened twenty-something daughter.

My mother kissed my face, told me she loved me, but did not accompany me to the prep room. The walls were white and the hallways went forever. Four hours of surgery turned into eight. There had been some bleeding, they said.

Four hours of surgery turned into eight. There had been some bleeding, they said. I woke panicked and groggy. What time was it? Did my mother know I was okay? In the ICU, the nurses told me I had the healthiest lungs in the ward. My head was so heavy. I remember the morphine made me sick. I thought my stitches would split back open.

Slowly, the physical evidence of trauma faded. I wrote so many pages pondering the dreamless darkness of those eight hours. If I had died, would they have gone on forever? Would I have known myself missed? Had I glimpsed into the after and found it empty? For weeks afterward, I dreamt vivid, terrifying flashes that woke me in the night.

Through a scattered plot of points over a period of years, I can trace a path from the first suggestion of something amiss to the doctor’s final diagnosis. At any number of crossroads, I could have turned another way and arrived at the end more abruptly. I think of the neurology appointment I made in March of 2010, then canceled because the headaches had subsided for awhile. Or the end could have been different, could have been worse, could have been nothing. If I had taken more vitamin C or had eaten better or slept more? If the tumor had been cancerous or inoperable? Or — again — that wheel of irrationality.

It’s many years on now and I can climb mountains as well as stairs. I write stories and keep more in my fridge than condiments. My hair has grown out and most of the feeling has come back to my head, though they severed the nerve there. Whenever I tell anyone that I once had a brain tumor, I qualify the statement by adding: but I’m fine now.

 

At the end, this is the main reason I play the piano, it was my first medicine to come over my pain and the change I had in my life. Please respect my thoughts.