When we last left our 21-year-old hero , a tumor board of top pediatric neuro-oncologists, neurosurgeons and radiation oncologists rendered a verdict of “We don’t know what to do with you” regarding how to pursue postoperative therapy to cure his brain cancer.
After being presented with “We have no idea what to tell you,” by some of the most talented and experienced oncology professionals in the world, the fate of my postoperative treatment for pediatric brain cancer ultimately fell into my own hands.
What the tumor board did was present myriad options, each with unknown pros and cons. From my vantage point, it was like looking at a takeout menu where you get to pick one item from column A, one item from column B, one item from column C and then get a free can of soda.
Given that my eight-hour surgery was behind me, and the neurosurgeon was confident he got as much of the tumor out with as clean of margins as biologically possible, I really had no choice but to make my personal best guess as to which combination of treatment options would be the right choice, without a shred of clinical evidence to back up that decision’s long-term efficacy.
And so, in the rush to begin something, I had a limited window to investigate what each of these options meant. Thus the phone calls began to each doctor on the tumor board, asking why he or she would recommend a particular avenue over another.
One doctor literally told me: “Do nothing. You’re fine. You don’t need any postoperative radiation or chemotherapy. Just get scanned every so often and live your life.”
Another doctor was the embodiment of fear mongering by recommending a 12-month course of aggressive chemotherapy alongside 33 treatments of full-body high-dose radiation, coupled with a bone-marrow transplant. He felt that any other course of action would result in my death six months later.
And the rest of the experts were all somewhere in between, each citing their own statistics which, I can only presume, were pulled directly from the ether, considering there was zero data to back up their incredibly confident assertions.
Apparently I made the right decision (whatever that means), given that I’m still here 20 years later. It wouldn’t have mattered if I had taken a more aggressive approach, but I might be dead, had I put on the breaks completely.
I sat down with my parents and was told, “We will support whatever decision you make. We love you and will always be here for you.”
And so I rolled the dice and here’s what came up:
I opted to postpone chemotherapy for a later discussion, pending the outcome of high-dose radiation to my head, neck and spine (all the way down to my tailbone). And within that protocol, I agreed to try an experimental treatment, which, at the time, was novel technology: 3-D stereotactic radio surgery. They would scan my brain and make a 3-D rendering of it on the computer; map the location where the margins of the tumor remained; and calculate how to get targeted bursts of high-dose proton beams into the specific brain region potentially most prone to regrowth.
These days, this technology is standard operating procedure, but it’s interesting to know I was one of those “pioneering” patients willing to sign my life away for something experimental, which actually wound up helping millions of people years later.
As may of my readers know, full-body radiation requires a casting where you lie flat on a table for hours while plaster is molded to your entire body, so that when you are positioned on the linear accelerator for radiation treatment, you are as uncomfortably immobilized as possible. Granted: It’s necessary, but it’s painful and just horrible.
Feb. 12, 1996: Game Time
My father drove me to the hospital for my simulation day. The plan was to go through all the motions of the radiation procedure without actually dropping an atomic bomb.
En route to the hospital, we were rear ended by a New York City cabbie. With the stitches in my head freshly removed, and my range-of-motion still hampered, it was a step backward to say the least. But the show went on, neck brace be damned.
Simulation day brought with it a college-level education in do’s and don’ts, including: the side effects that could arise and how to report those side effects (in the short, medium and long term); whom to contact when I need a prescription for a medication that would counteract the side effect of another prescription medication I was taking to counteract the side effect of the radiation. The fear of God was well-instilled on top of the existing fear of death that was rushing through my veins 24/7.
So, the day before Valentine’s Day, 1996: I found myself single, 21 and facing death every moment of every hour of every day. Radiation therapy began. And off to the races we went. On the way home, I had phantom nausea and threw up a week’s worth of food. It wasn’t medically possible for the radiation to cause that side effect on the first day. All hail psychosomatic stress! (In hindsight, I’m glad it happened because it sort of prepared me for what was to come.)
For the next six weeks, my father, a high school assistant principal, would leave work early at 11 a.m., drive home to pick me up and trek 30 miles to Manhattan’s Upper East Side, so I could receive treatment at 1 p.m. Come hell or high water (and there was hell and high water), we made that horrible drive back and forth every day.
Those 33 days were unpleasant. And by “unpleasant” I mean “the most tortuous and agonizing pain and suffering I have ever endured.” And the fun didn’t stop there. The side effects of those thunderous days would radiate for years and years.
My father and I were out the door and back home every day in four hours. And I slept the remaining 20. Every day. My throat swelled shut from esophagitis so I could not eat solid food. And anything liquid would be thrown up immediately. I was offered no nutritional counseling, peer support, or therapy of any kind during my care. And the same holds true for my father, as my primary caregiver. We were numbers. Statistics.
But we didn’t know any better. It wasn’t possible to think it could be possible to have anything else but what we experienced. Our dignity was flushed down the toilet and we fended for it alone, with only the strength of family to guide our hope.
March 29, 1996: The Last Day
They said I was “done” and to “go home.” But I was not out of the woods by any stretch. The doctors unanimously insisted on revisiting the chemotherapy conversation in one month.
So even though the final scans showed no evidence of disease in my brain, spine or bone marrow, given the entirely nebulous nature of my random takeout menu choice of care, everyone was much more concerned about the unknowns to come.
In those 33 days, I experienced — and continued to suffer from — nearly all of the major acute side effects of high-dose radiation to the head, neck and spine: fatigue beyond measure; chronic pain; xerostomia, or dry mouth; dysphagia, or difficulty swallowing; esophagitis; sore throat; unclear speech; migraines; chronic nausea; diarrhea; constipation; sleeplessness; hyperthyroidism; burned skin; tinnitus; and more. With the exception of my eyebrows and eyelashes, I was a hairless cat who had just lost about 100 pounds and was severely malnourished.
Granted one-third of that was steroid, but while I looked great, I was a shell of a human being; lost without guidance and no plan to live.
Because I was unable to chew and swallow solid food, I asked one of the doctors for advice and he told me to eat 3 pints of vanilla ice cream every day. You can’t make this stuff up. Cancer nutrition therapy at it’s finest, from the decade that brought us Vanilla Ice.
March 30, 1996: A Free Man? Not Quite
It was spring break and my college friends returned home. I hadn’t seen them in months and I looked and felt like death warmed over. I didn’t even recognize myself in the mirror. But they were warm, caring, invested and there for me.
Passover 1996 was very special. I have never been terribly religious, but the timing of the family all getting together for the holiday was karmic and necessary. And as sick as I was, I was somehow determined to go back to school, finish the semester as best I could and attend my graduation. If I was going to be suffering, I’d rather be suffering on my own terms — and that meant packing up the truck and getting driven to Binghamton University to finish what I started.
Against doctors’ orders, of course. What do they know?
I spent the next six weeks up at school. It was where I needed to be. I was still a walking shell but I was doing it on my terms. I got around campus as best I could, met with professors, regrouped on my missed course work and got busy living. My fatigue was compensated for by my enthusiasm, even though I did sleep for a dozen hours or so each day.
I even managed to pull off producing a musical I wrote (book, music, lyrics) before closing out the semester and graduating on time.
May 17, 1996: The Day I Beat Cancer
From that moment on, regardless of what happened, I had achieved the seemingly impossible. I was a college graduate about to turn 22.
But there was one last hurdle. My parents and I were to meet with the doctors again. Not just for a routine follow-up scan (there would be many in the years to come) but to discuss their risk-assessment of my case, and to place renewed emphasis on starting me on chemotherapy. I was Al Pacino in “The Godfather: Part III.” Every time I get out, they pull me back in.
It was early June, 1996, and I had just celebrated my 22nd birthday. My parents and I returned to the hospital for a two-month checkup and were brought into a sterile room to have “the talk.”
“You need to begin a course of chemotherapy immediately,” the doctor said.
“When am I going to die?” I asked, catching him off guard.
“You have a 50-percent chance to survive for five years.”
“And what are the odds with the chemo?” I prodded.
And with the smuggest of confidence and hubris he said: “fifty-five percent.”
For all you non-math wizards out there, that extra 5 percent equates to an additional three months of life, and then you might die anyway, with the added complications, suffering and long-term side effects of the chemo.
“And it’s a good cocktail.” He then rattled off the names of the chemo agents as my father frantically scrambled for a pen to write them down: cyclophosphamide, cisplatin, carboplatin, vincristine …
“Can you give me a few days to decide?”
It was like pulling teeth but he agreed.
My father’s best friend just so happened to be one of the world’s leading genetic researchers. We ran this list of chemo agents by him and his near immediate reaction was “DON’T DO IT!” He explained that the main side effect of vincristine is potentially permanent nerve damage to your fingers and toes, often known as peripheral neuropathy.
I was a classically trained concert pianist. Brain cancer had already robbed me of the ability to play. Reclaiming what cancer stole from me was all I had. That was my hope. One day I would rehabilitate myself, get back on the stage and show the world that I beat cancer. Vincristine would almost certainly kill that hope.
June, 1996: The Cancer Center
“You need to begin a course of chemotherapy immediately,” the doctor emphatically repeated.
“I am declining chemo.”
“What? Why would you do that?”
“I would rather die in five years without vincristine than die in five years and three months with vincristine, if it means I have a chance at rehabilitating my piano skills without peripheral neuropathy.”
“But … I am trying to save your life.”
We stood up, politely said thank you and walked out.
It was my first day as a cancer survivor.
He made it! Or did he? No, he made it. Stay tuned true believers because the next exciting installment of “Robitussin for Brain Cancer” will start you down the path toward the emergence of Stupid Cancer and the global young adult cancer movement.
— Robitussin for Brain Cancer, Part I
— Robitussin for Brain Cancer, Part II
— Robitussin for Brain Cancer, Part III
More from U.S. News
7 Reasons to Call Off a Surgery
5 Ways to Cope With Mild Cognitive Impairment
5 Common Preventable Medical Errors
Robitussin for Brain Cancer, Part IV originally appeared on usnews.com
