The day I found out I had a brain tumor, I almost fell off the examining table. It was a Friday last June, and I wouldn’t know much about the diagnosis – or the surgery it required – until the next week when I would, hopefully, see the neurosurgeon.
The doctor wrote a prescription of Xanax to get me through the weekend. At the pharmacy, I entered the wrong PIN for my debit card and nervously apologized. “It’s OK,” I told the people around me. “I just found out I have a brain tumor.”
The more I joke about something, the more uncomfortable I am. And while surgery didn’t frighten me, brain surgery really did. There’s a reason that people say, “At least it’s not brain surgery.” It turns out that this saying makes those of us who have to endure it really nervous.
To me, the brain was this complex, sensitive organ that, under normal circumstances, should never be looked at, breathed on or touched in any way. One wrong turn of the scalpel and I could have seizures for the rest of my life, or lose my ability to talk. I was quite fond of my neurological abilities, and I wasn’t eager to say goodbye to them just yet.
I coped with this terror by joking about it, constantly. I named my tumor Louie. I started a Facebook album introducing him – a 3.2 centimeter benign acoustic neuroma, on the left side of my brain. Louie is originally from the Bronx, likes long walks on the beach and is the most annoying part of me. Inside the album I posted photos of my MRI with him nestled in my brain.
Louie may not have been cancer (though, as my doctors reminded me, that wouldn’t be 100% confirmed until they went in there, dug him out and tested him). But he was malicious in every other way. I was losing my hearing and having severe dizzy spells, the reason I went to the doctor in the first place. Walking in the dark was difficult, and if I ever had to do a drunk driving test, I would have failed. Severe headaches were waking me up at night, and Louie was pressing on my brain stem so much that he was causing papilledema, or swelling behind my eyes.
That condition caused me to see three separate eye doctors, and I had a series of vision tests. All were surprised that my sight wasn’t compromised.
“How many times have you had the visual field test?” one of the nurses at one of the eye doctors asked.
“I don’t know,” I said. “Like three?”
“And no problems,” the nurse said, almost disappointed. “What’s the name of your tumor again?”
“Louie.” Silence filled the space between us. “Oh, you mean the type of tumor. An acoustic neuroma. Benign.”
Louie and I kept up our routine all summer, since surgery couldn’t be scheduled until I also saw an ear, nose and throat specialist. Lucky me: two surgeons.
It was finally scheduled for 28 August 2015, three days after my 35th birthday. When I got the paperwork that estimated my surgery would last 12 hours, I took a photo and posted it on my Instagram and Facebook. “Whoa, that’s a spicy-meatball!” I wrote.
The day of the big event, I had to be at the hospital before the sun rose. My parents drove me in silence. I was scared, but I had no alternative option. And I knew that anesthesia would soon take away my memories. But I was frightened, then, for my parents. They had to wait in agony for me to get out of surgery. If the unspeakable happened, I wouldn’t know, and they would be too aware.
The last thing I remember before I drifted off was the injection of the happy cocktail and the sounds of nurses putting up the metal sides of the bed, unlocking the wheels, readying me to be taken to the operating room.
“But wait,” my mother called out. “She hasn’t gotten funny yet. She gets funny after the cocktail.”
Blackness.
When I awoke, I was in unbelievable pain, but I was awake. I spent one day in ICU, and I was home in five days.
It’s been almost a year since that day. I avoided some of the worst potential outcomes from my type of brain surgery – I have no real balance issues and no facial paralysis (they had to leave a sliver of Louie inside me to prevent this). But I permanently lost all hearing on my left side, my Louie side, which is still uncomfortable and tingles. I’ve had two follow-up MRIs, and so far, no growth. If it does grow, I’ll need radiation. But I have a titanium mesh plate in my head, so that’s pretty cool. I still joke about Louie, even though he’s still the scariest thing in my life.
But now that I’ve made it through, I also sleep deeper, and better. I can lie on my good ear, and that drowns out most noise, be it a snoring boyfriend or a barking dog. Sometimes I sleep through the alarm, but now I have a legitimate excuse. Oh sorry, I couldn’t hear my alarm, I tell anyone annoyed at my lateness. I am half deaf, remember? Yes, from a tumor. Benign.
Open contributions: When have you faced your fear?
