Robitussin for Brain Cancer, Part III
By Matthew ZacharyJuly 22, 2015 9:42 AM
When we last left our then-21-year-old hero , now the founder and CEO of Stupid Cancer, a cancer advocacy nonprofit for youth and young adults, it was 1995, and he was told the tumor in his brain was, in fact, malignant, and that the rabbit hole he'd just entered would be a deep descent into the unknown.
Let's take a step back.
After my brain surgery, which the neurosurgeon claimed had removed nearly all the cancer cells with very clean margins, I was told that despite that "good news," I was not out of the woods yet. The type of tumor I had, a medulloblastoma, was notorious for leeching its cancer-ness (aka metastasizing) into the spinal fluid and bone marrow of its hosts.
Despite a post-surgical barrage of clean MRI scans (head, neck and spine), I was told I'd need radiation therapy to "clean up whatever mess was left behind" to statistically improve my prognosis based on surgery alone, which was presumably pretty horrible considering they didn't even disclose those percentages to me at the time.
Mind you, throughout all of what you are about to read below, I was acutely recovering from brain surgery, which is a process. A huge process. I was in constant pain, extremely tired and had lost all range of motion in my neck due to the scarring. I was essentially Batman with that cowl that prevented him from turning his head, just his whole body.
And yet, one of the must crushing ongoing individual blows was that I still couldn't play piano. And that was all I wanted to do.
Despite the fact that some fine motor coordination had returned to my left hand after surgery, nearly all the muscles had atrophied because my hand had been improperly used for so many months.
If I were to survive this ordeal, a possibly larger challenge to get my life back was ahead of me: that being my ability to play again.
January 24, 1996: Just the Beginning
My neurosurgeon, referred me to the director of radiology at a nearby hospital.
We went over my case and discussed the situation. I learned a lot about what radiation was, how it worked and why it was needed. My father, who was by my side at the time, and I then asked him a very matter-of-fact question, "Excuse me doctor but how many cases of young adult medulloblastoma have you radiated before?"
"None."
And so, we politely excused ourselves (in a similar puff of smoke that you'd see in a Road Runner cartoon) and made a beeline back to the neurosurgeon. The conversation went something like this:
"Please refer us to someone who has actually done this before. Like 10,000 times before. Maybe more."
"I know a guy in Manhattan you should see," he said.
January 29, 1996: The Rabbit Hole Deepens
NYU Langone Medical Center's Dr. Jeffrey Allen could have been one of the -- if not the only -- pediatric neuro-oncologists at the time qualified to not only comprehend my diagnosis but also confidently make good referrals and suggest post-treatment options that would (hopefully) provide me with the highest likelihood of surviving.
My first visit to the eighth floor of 317 East 34 th Street in Manhattan was both comforting and entirely nerve-wracking to say the least. Let's call it "semi-controlled chaos."
I was the oldest patient there. The office was filled with bald children as young as three months old but not much older than 10. Many of the parents were in their early 20s, just like me. The carpet had ducks embroidered into the pattern, the wallpaper was a farm landscape and the ceiling looked as if clouds were painted on it.
There were toys, books, plushy animals, balloons and assorted children's playthings scattered about. It looked like the 70s TV show "Romper Room" had exploded. (Look it up, kids.)
I didn't belong here. And it showed.
All things considered, the initial meeting with Dr. Allen went as well as it could have and he was very straightforward with us. Here's what I learned right off the bat:
Medulloblastoma incidence in 1995 was about 200 cases per year. That's 200 cases against the backdrop of 1.2 million cancer diagnoses in the U.S. alone. And of those 200 cases, "almost none" were in patients older than 12. I was 21; a "one in a million" case. How quaint!
What happened next? Dr. Allen took me on as a patient and made introductions to another radiation oncologist, with whom we met the next day.
January 30, 1996: Shit Got Real
The radiation oncologist explained with intense candor what the true scope of the situation was, and what she felt my current options were.
Over the course of an hour or so, we discussed what might as well have been an entire graduate school course load outlaying the myriad permutations and combinations of horrible complications that could result from any radiation therapy I would receive.
Short-term side effects included hair loss, severe skin damage, catastrophic nausea, vomiting and fatigue, as well as diarrhea, constipation, loss of appetite, migraines and more.
When she outlined the extremely lengthy list of possible long-term side effects, the only thing that I heard was "more cancer." Then everything sort of went all Charlie Brown teacher on me.
Me: "Hold the phone! You mean to tell me that the very thing that might save my life right now could actually kill me later?"
Her: "Oh yes. Yes indeed. It absolutely could kill you later on."
(Well, it didn't quite go that way but hopefully you get my point.)
"Oh, and fertility," she said. "Go bank your sperm before we start because this may make you infertile for the rest of your life."
SIDE NOTE: Knowing what we know now, this was a fairly progressive attitude toward young-adult cancer 20 years ago. With that said, at the time, the last thing on my mind was parenthood.
It gets worse.
How? Let's find out together.
As if this drama hadn't peaked yet, I found out that the required radiation machine was in high-demand. The wait was at least a month before I could even begin, and this was not an option given the severity of my situation.
What's more, my radiation oncologist recommended that, due to the rarity of my cancer, my case would need to be shared with her colleagues on a "tumor board," a committee of experts who would collectively offer up counter-recommendations for next steps. After all this, radiation might not be the best or only option to save my life.
January 31, 1996: Enter the Week of Absolute Hell
Everything below this line happened over the course of the seven days, during which the tumor board was debating my case and determining my fate.
I banked my sperm. Mind you, it wasn't awkward having my parents drive me there and back. Not awkward at all.
I endured unbearably traumatic spinal and bone marrow taps, two procedures that haunt me to this day.
A radiation machine was made available to me at a nearby institution, so I met with the radiation oncologist there to get his opinion. We discussed a timetable to begin simulation testing and precision body casting (for radiation accuracy). He also told me (in clinical doctor language) that I'd be dead in a few months if things didn't go well and, if I made it that far, I might "fail" in a year or so despite any treatment I would receive. #bedsidemanner.
Dr. Allen reported that the results of the lumbar puncture and bone marrow were negative but not to get confident because that data tends to show false positives and is often not foolproof.
While driving home from that radiation consult, my father and I were rear-ended by an NYC taxi cab, exacerbating the already significant damage I had suffered to my head and neck from brain surgery.
Most significantly, given all the unknowns on our plate, the least of which was the shrinking possibility of rehabilitating my left hand to its pre-symptomatic state of competency, the agonizing decision was made that I would forego my grad school plans.
I was numb. My family was numb. The corded, wall-mounted, yellow home phone was never on the hook. (It was 1996, kids.)
Constant calls with friends, family, neighbors and my professors, coupled with endless foot traffic from visitors, pervaded the days and provided some comfort to our silent hysteria. The house continued to fill with gifts, flowers, baskets and more. You'd think someone had died.
It did not seem possible to have hope.
My future became even more uncertain yet, somehow, I still had it in my head -- possibly where the tumor used to be -- that I would complete my undergraduate degree on time that May, come hell or high water. If this thing was going to kill me, I would die a college graduate.
February 8, 1996: The Moment of Truthiness
Dr. Allen's office called.
The tumor board was ready to present us with its findings, opinions and recommendations on what the best course of action would be for me to achieve the highest chance of survival.
And I quote, "The tumor board could not come to a unanimous decision on what to recommend for patient Matthew Z. Greenzweig."
#FML.
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.)
Matthew Zachary is founder of Stupid Cancer, the nation's dominant youth and young adult cancer advocacy nonprofit. As CEO, he built the team that launched a social movement by disrupting and innovating the nonprofit model and uniting several industries to embrace the cause of young adult cancer survivorship. Diagnosed with brain cancer at 21, Matthew is a concert pianist and ad-agency veteran who holds a Bachelor of Arts in music, computer science and sociology from Binghamton University -- SUNY and lives in Brooklyn with his wife and twins.
No comments:
Post a Comment