When we last left our 21-year-old hero, he was six months shy of his college graduation and, more or less, given six months to live after a diagnosis of brain cancer.
There was a window of roughly two weeks between the discovery of a golf-ball-size mass in my brain on Dec. 29, 1995, and the neurosurgery scheduled for Jan. 9, 1996. Doctors did not recommend a biopsy because the tumor was growing rapidly and there was no time to waste. Worse, another MRI showed it was millimeters from breaking through the cerebellum (in which it was apparently encapsulated) and wrapping itself around the brainstem.
These days, I affectionately refer to the über-traumatic period between diagnosis and treatment as the “Oh Shit Window,” or OSW, where everything in life is just so turned upside down, you not only don’t know which way is up, the fundamental principles of gravity break down and pretty much everyone and everything around you sounds like Charlie Brown’s teacher.
My OSW was probably not much different that anyone else’s. It was marked by fear, anxiety, uncertainty and the immediate need to become a medical expert in the fields of oncology, surgical oncology, radiation oncology, etc.
Each day lasted a year and paranoia grew. The phone in my parents’ house rang off the hook with my mother and/or father constantly talking to friends, family and insurance companies about the few things we did know and the overwhelming majority of things we did not.
It was the neurologist’s assumption that, based on my scans, this was “most likely” a pilocytic astrocytoma, a benign brain tumor often found in children and young adults under age 20. It was a rational assumption; one that should have, perhaps, in his mind, put us at ease because it could be something much worse. But, to the uninitiated, anything is bad. There was something in my brain that should not be there and someone would have to cut open my head, touch my brain and scoop it out. That would be terrifying even if the thing the surgeon was scooping out was a wad of hundred dollar bills.
The surgery was set for Jan. 9, 1996, so, with about one week’s notice, I made the decision to contact my university and tell my professors, faculty mentors and the campus registrar about my situation: that I was having brain surgery and may not be able to return to school on time to complete the final semester of my senior year. Needless to say, they all bent over backward to accommodate me and were overwhelmingly supportive and empathetic. (For what it’s worth, I had amassed enough credits by then to have graduated 1.5 times.)
On a side note, I had plans to matriculate at the University of Southern California School of Cinematic Arts upon completing my undergraduate degree to study film composition with the late Jerry Goldsmith. I didn’t have the will to reach out to them because I was hoping for the best.
The day before my surgery, the sky darkened and the snow began to fall. Lots of it. Yes, Jan. 9, the day on which my brain surgery was originally scheduled, was dubbed “The Storm of the Century,” which left our area buried and paralyzed under 3 or more feet of snow. It was the worst storm in 48 years.
Even though the phone lines were down (cellphones weren’t around yet) somehow the hospital got through to us and pushed the procedure to Jan. 10, when the storm was predicted to end. And end it did, leaving behind impassible roads, vehicles abandoned in the streets and everyday citizens struggling just to exit their houses, let alone get to the hospital for a craniotomy.
Somehow, with assistance from law enforcement, my family and I were able to make it to Staten Island University Hospital, where Dr. Ehud Arbit and his team were waiting for me. This would be the day that changed everything. Forever.
I was prepped for three hours, consulted with the entire surgical staff and signed my life away to a man I hardly knew but trusted to save my 21-year-old life.
There’s a scene in the film “50/50” where Will Reiser’s character says his goodbyes to his parents and gets wheeled away to the operating room. I only saw it once because I can’t ever watch that scene again. That was me. The film literally replicated exactly what happened on Jan. 10, 1996. It was the worst day.
I didn’t know if I’d ever see my family again. I didn’t know if I would grow up. Play piano. Meet a girl. Become a dad. Dance at my child’s wedding. Hug my grandchildren. Not typical thoughts for a 21-year-old but there I was. Hoping.
Eight hours later, I vaguely recall seeing my family smiling and crying. I made it. The surgery was a success. Pathology would take 5 to 7 days to determine what exactly we were dealing with.
The next day in the intensive care unit — in a room dimly cast by a flickering neon exit sign — I awoke in the middle of the night under the veil of a morphine drip to see a priest standing at the end of my bed holding a bible. Was I dreaming? Was this real? What is happening?
So, in my stupor, my reaction was not to panic but to shout, “I’M JEWISH. I’M JEWISH. I’M JEWISH.”
In barged the on-call nurse after presumably hearing my choked plea. She instructed our man of the cloth that he was tending to the wrong patient. Then off he went. (You should have seen the fit my mother threw the next morning.)
I later learned that the odds of surviving the surgery without risk of major cognitive impairment was 20 percent. Talk about beating the odds.
Fast-forward five days when the pathology returned. It was not good. Turns out I did not have a pilocytic astrocytoma. I had a medulloblastoma — the most common malignant childhood brain tumor. It is highly aggressive, spreads through the cerebrospinal fluid and frequently metastasizes to different locations along the surface of the brain and spinal cord. In 1996, the 5-year survival rate was 50 percent.
What’s more, the average age of diagnosis was around 6 years old. I was 21 and was told they’d never seen a patient my age with this cancer. That threw that 50 percent down the tubes and put me into the entirely different category of “There is no data. We have no idea if you’ll be alive in a few months and hope some radiation can save your life.”
What was originally thought to be a simple recovery for a benign tumor was now a race to understand what, if any, postoperative treatment options existed. The rabbit hole we’d been thrust into had just gotten a lot deeper, and unthinkably more uncertain.
A referral was made to see Dr. Jeffrey Allen at NYU Langone Medical Center, one of the world’s leading pediatric neuro-oncologists. If there were any leading experts who had dealt with patients like me, he’d be the guy — and the guy he was.
But for now, forget the piano. Forget graduating. Forget USC Film School. Forget everything. This was life and death.
Will he make it? Does our hero emerge victorious over Stupid Cancer? Stay tuned true believers because you’ll just have to wait for the next exciting installment of “Robitussin for Brain Cancer.” (More spoilers: He makes it.)
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Robitussin for Brain Cancer, Part II originally appeared on usnews.com
