“Well, we’re gonna have to operate.”
It’s been almost twenty years since I heard those words, and I remember them as vividly as if they were spoken over breakfast. They sounded so awkward and out of place, yet they made absolutely perfect sense. They were heavy and unexpected, and they fell right out of the abyss and smacked me almost hard enough to push back against all of the suffering I had been through. But at the same time they came with an overwhelming sense of relief. They were the result of three years of trial and error, and while a myriad of other diagnoses had preceded this one, this time was different. We had found what we were looking for. It was not just a hypothesis, or an experiment, or the placebo effect. It was not imaginary or “all in my mind.” It was tangible. Every doctor in the past had suggested that my condition could be treated with drugs, and those drugs worked magnificently. That was the problem. I quickly sprung back to my old self, would pass all of the doctor’s tests with flying colors, improve vastly in school, regain my focus and motor coordination, return to my old self, and then slowly climax, slip, falter, fail, fall, be prescribed another new drug, and end up right back at the beginning, ready to start the vicious cycle yet again. My doctors and I were shooting at a moving target, and every time we missed I made another rotation in the constant downward spiral we were fighting.
That year was 1997, and I was eleven years old. I had just received an MRI scan of my brain. It had revealed a tumor located on my brain stem. While the growth was benign, non-growing, and not cancerous; perfectly harmless; its position was such that it was blocking the drainage of spinal fluid out of my brain. As a result, the fluid backed up and placed a tremendous amount of pressure on my brain. There was no way to tell how long the tumor had been there or why it formed in the first place.
The following image is an MRI of a healthy human brain, from Braininfo (1991-present), National Primate Research Center, University of Washington, http://www.braininfo.org. 26 September 2017.
Look at that light paisley shape right in the middle of the brain. That’s the third ventricle, a cavity where spinal fluid collects, and part of what the brain uses to move that fluid around and continuously allow it to drain out. You can also see it just above Line A in the bottom right image. That dark part in the middle is the spinal fluid, and because this is a healthy brain, it has a normal amount of spinal fluid in the third ventricle. It’s common for a tumor like mine to interfere with the drainage of the spinal fluid, so that it backs up into the brain in a condition creatively named hydrocephalus, “water on the brain.” That’s what happened to me. Patients with hydrocephalus typically experience splitting headaches, loss of coordination, memory loss, changes in personality and changes in behavior. I experienced all of the above to a debilitating degree, except the headaches. And this all began when I was eight and continued until it was discovered when I was eleven, just in time for puberty to be ruled the most likely cause. These symptoms worsened over three long years, which represents more that a quarter of your life when you’re eleven years old. I started losing focus in school. When homework was introduced, I couldn’t concentrate on it long enough to complete it. I couldn’t translate was was taught in class to what had to be completed for the assignment. My friends started beating me in the races we ran outside school. I started getting confused in my subjects. I no longer got straight A’s. I didn’t know what was happening. I never had to try very hard at anything; I used to pick up everything I ever attempted and effortlessly master it. Then I struggled to remember the simplest lessons and tasks.
My tumor is located in such a way that drainage of spinal fluid out of the third ventricle was completely blocked, causing hydrocephalus. Compare the above image to this one, of my brain that day in the MRI machine:
That image is not distorted. A little blurry maybe, but you can clearly see that vast sea of black taking up most of my brain. It isn’t glare, it’s my third ventricle, swollen with spinal fluid to the point that it grew larger than the rest of the brain. All that fluid was creating so much pressure, it’s no wonder I could hardly ride a bike any more, or get more than four or five bounces out of my pogo stick.
Instantly, every challenge I had endured seemed meaningless. I had spent the first eight years of my life being the best at everything I ever did. I was the fastest runner, the most advanced reader, got perfect grades, and I just accepted that that’s how things were. That’s how I was supposed to be. Now there was clear cause of the disturbing change I had been going though for the three years prior to this day. Nobody knew what, but something had changed in me, and now we finally knew that it must have all started with this harmless, bean-sized cluster of extra cells. But when I got up off of the cold hard plastic bed of the MRI scanner, I still didn’t know yet. The doctor had already delivered the news to my parents; I was the last to hear about it. I still don’t remember any of the details of the conversation other than that ton of bricks delivered by the attending physician.
The details of the next couple of days are a blur. I remember coming home from the hospital and talking with my parents in their bedroom. I don’t remember if there was crying, but there probably was. I only remember thinking that finally someone had figured out what was wrong with me and knew just how to fix it. The tumor was harmless, yes, but it was attached to my brain stem, and therefore far too risky to remove. It had to stay, and we had to work around it. It’s still there. It’s going to be there for the rest of my life.
There was talk of a new surgical procedure that would puncture a small hole in the tumor so that the fluid could drain through it. It had been done before but wasn’t a widespread practice. Previously, shunts had been implanted to drain spinal fluid in cases like these but they carried risks of malfunction and infection. My tumor was (still is!) non-growing, so the shunt just isn’t necessary. In short, I have a hole in my brain. But the point was there was a plan. The plan was going to work and it was going to permanently cure me. It was a time of conflicting emotions that no eleven year old mind should ever have to comprehend.
Outside, a utility truck idled loudly. How could the world possibly continue after receiving such drastic news? My whole world had just collapsed, didn’t they know that? Was this a time to rejoice? Was it a happy occasion that the search for the cause of my ailment had finally ended? The confusion and dichotomy of the news of that day still haunts me. There was tragedy because of the seriousness of my diagnosis but there was also celebration because now there a solution, we just needed to follow through with the plan. If this was a scene in a movie, that truck would only be here to give the impression of overhanging tension, the kind that you wanted to cut with a butter knife just to shatter it. Any moment, the scene would change and a new dialogue would inform us of what happened next or what exactly the character was feeling or how this would resolve. This was the part where after hearing some bad news, there would be a droning background noise to instill a level of discomfort or uncertainty; to denote the seriousness of the situation to the viewer; to suspend time for a moment or an eternity before resolving. Yes, that idling truck outside was perfect. It belonged here. It described the sea of emotions I was feeling in my movie but was unable to put into words.
Except the scene in my movie never changed. It felt like a dream that I couldn’t awake from. This wasn’t the empathetic kind of tension you got from watching a movie. This was happening to me and no one else. I was going to have to undergo brain surgery. My procedure was to be performed at Children’s Medical Center in Boston, three and a half hours away. Luckily, it had to be scheduled enough days in advance that I would be able to celebrate Halloween in my own neighborhood, instead of wandering around a hospital with a bunch of sick children reluctantly accepting Dum Dums from some overly enthusiastic nurses. My eleven-year-old inner child was grateful for this, as if finally being told he can come out now, forget about all that’s been going wrong and finally just be a kid, just this once. Come out and play one more time before your whole world changes. There’s no need to worry any more.
As an adult, now I realize how easy my parents had made this experience for me. Always the positive thinker, my mom immediately talked as if I had already been cured. What kind of coming home party we would throw (three years overdue.) What great and magnificent things I could accomplish once this hurdle was behind me and I had returned to my old self. I was completely naive to the fact that the worst times were still to come. My road to recovery was still ahead and it would be full of its own challenges, and the hardest struggle, the recovery and the making up lost ground, would be far more difficult than my decline. Of course I still had all the help in the world, but nobody else would be going through my experience but me. This was my struggle.
Yet I was hardly alone. I wasn’t the first child to be diagnosed with a brain tumor. I was just the only person I knew with one. Most others in my position experienced untreatable, excruciating, splitting headaches, but not me. I guess I was one of the lucky ones. That was the problem. If only I could have had the headaches; my case would have been enormously easier to diagnose and it would have been diagnosed sooner too, probably before it got this bad. There’s just no way of knowing what could have been.
Obviously, the surgery was a huge success. Today, I can hardly imagine being that scared little boy. Most people I know would never guess that I have a brain tumor or that most of my childhood was robbed from me. Even my adolescence was abnormal. While everyone’s is awkward and confusing and emotional, mine came with the additional complications of a brain injury. And that’s why I’m writing this. For far too long, I’ve focused on the future. It’s easy to forget how far I’ve come when it’s taken this long to get here, and there’s always more to go. I thought I was going to be cured, that I would spring off of the operating table and tell the world “I’m baaaack!” and I could leave all of my past problems behind me. Little did I know that this was hardly the end of my struggle. November 3, 2017 will mark 20 years since the day of my surgery. In so many ways it was not the end of my suffering but just the beginning of a long, slow, and painful recovery that has lasted far longer than my decline and still continues today.
