“So, any other concerns?” asks Family Doc as he announces the end of this year’s physical exam by snapping off the rubber glove. "Oh, uh…umm…well golly you know now that you mention it, uh, sorta once in a while I get a little tingle on the left side of my face. It’s always on the left side, never anywhere else and never radiates to the right side of my face. No big deal. Nothing I can’t live with. "; Family Doc is half way to the trash can with a used rubber glove, but comes to a stop. He looks like he’s trying to dredge up something he learned in medical school long ago. “You need to see a Neurologist,” Family Doc says, and after a pregnant pause adding, “It could be a brain tumor.”
Nerve Doc’s clinic is located deep in the lower level at the University Of Kansas Medical Center. Nerve Doc’s job is to try to determine the cause, and hopefully provide some sort of absolution. I am summoned and I tell Nerve Doc my story. He asks some questions. Trigeminal Neuralgia is Nerve Doc’s verdict. The pain is caused by an irritation of the Trigeminal nerve on the left side. “We usually don’t find a cause”, Nerve Doc says, and “The pain will get worse over time.” He gives me a prescription nerve deadener/pain killer. It’s called Gabapentin by the pharmacists who work from behind a counter and called “Johnnies” by pharmacists who work from a street corner. Nerve Doc doesn’t mention anything about the brain tumor theory, but does order an MRI. Before I fully comprehend it, I’m strapped to a table moving under its own power that is going to try to squeeze me into an aperture that is obviously too small for a human body.
Bad news travels fast, and that applies especially to medical test results. My news arrived first thing the next morning. Finally there it was in writing: a Meningioma, or a benign brain tumor to us non-medical folks. A thesaurus may tell you that “benign” and “harmless” are synonyms, but that’s not the case when it comes to brain tumors. It is not harmless when it is pressing against a major artery, left pons, left ocular motor nerve and entangled with the trigeminal nerve. Serious, but not a death sentence like a cancerous brain tumor certainly would have been, and for that I will always be thankful. Nerve Doc says I need to see a Neurosurgeon, and in a little over a week, I had my appointment with the Pumpkin Cutter Doc.
I find a seat. Then I take in my surroundings. I let my imagination fill in details for stories I see etched on the faces surrounding me. Across the room an older gentleman sits quietly, vacantly staring forward, his shaved head showing recent stitches. It looks like somebody has been playing tic-tac-toe on his scalp and he came out the loser. A middle aged lady dressed in a tailored business suit and slacks enters the waiting room. Then I notice she is dragging her right leg as she walks. She was probably counting the days until early retirement from a high paying job, and after that, nothing to do and a long time to do it in a sunny climate. But then she felt that first slight numbness in her right leg, like the distant rumble of thunder heralding the arrival of a storm just beyond the horizon. Unseen and unexpected, but fast approaching and very real. If you want to see God smile, tell him you have plans. Now she can barely walk without assistance. I suspect the surgeon is going to have some pretty bad news, and as for those retirement plans, well, it’s nice to dream, but everybody eventually wakes up. A young lady rolls by in a wheel chair, surrounded by family talking in hushed whispers. She’s pretty--swimsuit model pretty--but her eyes have no life in them; her expression is completely blank. Whatever her hopes and dreams in life were before and whatever her family’s dreams were for her--at her age the sky really is the limit—they are all gone now, snuffed out by a handful of brain cells that went feral. Plenty of other people haunt this waiting room, but it’s more of the same, or worse. It seems fate has dealt the deck, and these folks ended up with all the losing cards. Where brain tumors are concerned, about 6000 people in the US draw the same hand each year, and about two thirds of people with brain tumors will have malignant forms or in nonmedical terms, cancer. You play the cards you are dealt, and just by sheer luck, I hold the best cards in the house this round. My brain tumor is benign, as are only one third of brain tumors. Finally, a nurse appears and now it’s my turn to meet the Jack O Lantern carver in person.
Pumpkin Cutter Doc is a slightly built man with intelligent dark eyes and steady, delicate fingers. He speaks in a direct, but kind style. This is a person who has held somebody else’s brains in his hands many times; an awesome responsibility that I can see reflected in his manner. We look at the MRI images of my brain, the computer slicing down though the layers on the screen like a sharp knife would cut away layers of an onion. Finally we arrive at the brain stem, and there’s the tumor. It looks like a piece of Silly Putty, about the size of a peach pit, with wires draped over and under and a few poking out of its sides. The Silly Putty is pressing against the left pons, wrapped half way around a major artery and extending into Meckel’s Cave. This is a bad place for a tumor, he points out, and a difficult, dangerous place for surgery. I have less medical training than a funeral director, but what he says is obvious even to me and I concur. Benign brain tumors don’t spread, so they aren’t as deadly as cancerous tumors, but in a closed space like the skull, as they slowly grow they can eventually create enough pressure to cause damage to important structures in the brain. This can cause headaches, vision problems, motor problems, numbness, pain and seizures, all depending on where the tumor is located within the brain and how big it eventually gets. If left alone, my tumor will next cause continuing and worsening pain, vision problems in my left eye, possibly seizures, and perhaps even be fatal as it exerts more and more pressure on the artery and left pons.
Location, location, location; it is as important in brain tumors as it is in Real Estate. If a benign tumor is in a location of the brain where it isn’t hurting anything, the best option is to leave it alone since the risks of surgery will outweigh the benefits of removal. But let’s say, for example, a benign tumor is located next to where you store your memories from the Third Grade. And it is causing problems, so you decide on surgery. That surgery is less risky than an operation near the brain stem because you’ll likely never miss those memories if a little brain tissue gets removed along with the tumor. If the surgeon removes those memories from your freshman year in High School while he’s at it, you’ll likely be even better off than you were before surgery. But if he takes out even a few small hunks of your brain stem, you’ll be a human vegetable the rest of your life. Or you’ll be dead because you’ll forget how to breathe, or your heart will forget how to beat. That’s why an operation near the brain stem is so risky, and like visiting New Jersey, should only be considered if you have a really good reason to go there and even then only if you have no other option.
Trying to end our conversation on an upbeat note, Pumpkin Cutter Doc tells me that at least my issue is a ‘Quality of Life’ issue. For most people who come in here, he continues, it’s an ‘End of Life’ issue. It is a high risk operation, but if the surgery goes without any major hitches, I have an excellent prognosis. Even with all the risks, I’m sure I’m the luckiest person he’s seen today. Of course, you can get a second opinion, Pumpkin Cutter Doc says…but any other Neurosurgeon in this region will either refuse to operate on a tumor that’s in your location, or will refer you to me. I’ve been living from one hit of Johnnies to the next. The future without surgery promises to be one of ever increasing pain, and ever increasing doses of Gabapentin. Looking out at the world through Gabapentin tinted glasses, counting the hours from one hit until the next doesn’t seem like much of a life at all. Besides, I figure I’ve been pretty lucky so far, and a gambler never quits while he is ahead, so why not bet the whole pot on the next hand. There’s no decision to be made, really. No more than choosing what your eye color will be before you’re born. Pumpkin Cutter Doc’s eyes light up when I tell him I’m ready to schedule surgery. I should make an interesting class project for his students. Since benign tumors are usually slow growing, I reason that I can put surgery off until next winter when farm work is at low ebb. His brow furrows at this suggestion. Pumpkin Cutter Doc is a quick thinker, and this is the first time I have stumped him. Either he has a boat payment due in August, or much more likely, he doesn’t want the tumor to damage my nerves any more than it already has, so surgery is set for August 10th. I’ve just given a stranger permission to drill a two inch hole in my skull behind the left ear, and then dig around in my noggin with what appear to be chop sticks. Surgery near the brain stem is a roll of the dice, but at least I have a chance, and the odds are in my favor.