1  “Chief Complaint: Brain Tumor”

“CHIEF COMPLAINT: BRAIN TUMOR,” that was the subject line in the memo from my neurosurgeon to my general practitioner.

I did have a brain tumor. But the memo makes it sound like I knew I had a brain tumor and that it was just one of several complaints, “I have a sprained ankle, a sore back and can you do something about this brain tumor?” I want the record to show that I didn’t even know that I had a brain tumor.
So, how do you know if you have a brain tumor? The clues aren’t always obvious. According to the American Brain Tumor Association’s (ABTA’s) excellent website,"headaches" are a common “initial symptom” for my type of brain tumor (meningioma). Headaches are also, well, common, and don’t usually mean that you have a brain tumor.

Seizures are another indicator. If you have a seizure, it’s pretty obvious that you need to go see a doctor.
But what if you don’t have a headache or a seizure? I didn’t.
Mental and personality changes are also a warning. While “mental changes” sounds ominous, they could be as innocuous as short-term memory problems, speech glitches or concentration lapses.
And while I had my share of “senior moments,” none of them seemed any worse than the senior moments of my friends.

In the beginning, my chief complaint was that my eyesight was becoming wonky.
What do I mean? Well, in the summer of 2010, I began to recognize that something was wrong with my vision. On an erratic basis, in the right vertical third of my right eye, I would see a cascading series of irregular, amoeba-like images that looked like they were straight out of a petri dish. The rest of my right eye and my entire left eye saw what everybody else saw.
At first, I tried to ignore it. I told myself that it was a floater. It did, when it occurred, interrupt my train of thought but, as my friends and family will tell you, that isn’t a particularly well-connected railroad in the first place.
Why didn’t I run to the doctor when I first started seeing these wild images? Well, I have a tendency, and I suspect other folks do too, to put off learning about bad news, especially regarding health issues. This is, of course, irrational behavior. in almost every case, the earlier you know about a health problem the easier it is to fix.
So why pretend you don’t have a health problem? it wasn’t that I couldn’t handle the truth; it was more like I didn’t want to handle the truth right then. But even though I was in full denial, I knew I had to “pop the pimple” sooner than later.
I know people who, even when they know they have a serious health issue, avoid going to the doctor. My grandmother’s sister refused to go to the doctor even though she was going blind. Guess what? She went blind.
I’m not sure, but I think we do this because we believe that if we can just hide from the bad news for a few more days (or weeks or months), it will buy us time. it will buy peace. it will buy calm before the impending storm. And maybe, just maybe, this aching back or sore throat or strange eye problem will fix itself.
Facing bad news head on takes some courage. I knew a lady who summarized this saying, “you have to run to the fire.” While she used it in a business context, it applies here as well. A burning problem won’t go away on its own. it might not go away with the help of the best hospital or medical team in the world, but it can also turn into a forest fire if you don’t ask the question, “What’s wrong with me?” I needed to ask that question.
But at the time I felt pretty healthy, and the thought of being seriously sick or ill just didn’t make sense to me. I was training for the North Shore Century, a 100-mile bike ride, and a summer of training had made me feel pretty fit. On top of that, the year before I had run the Chicago “Rock ‘n Roll” half-marathon with my youngest daughter, and later that year I finished in the top third of my age group in the Chicago Triathlon. I ate reasonably, wasn’t overweight, and my cholesterol and other health indicators were on target. How could I, of all people, be sick? My hubris was about to be punctured and deflated like a bike tire running over a rusty nail: noisily, emphatically, and painfully.
I thought of my college roommate who had developed Stage 1 diabetes. Since my paternal grandfather had died from diabetes, I knew that this was serious stuff. The first time I saw my old roommate, after we had returned from a seven-year overseas assignment, I was shocked. in college he was, maybe, 215 lbs. or so. Since I’d last seen him, he had ballooned up to something north of 350 lbs. I couldn’t figure out how this happened. In addition to putting on weight, he had lost all the feeling in his feet. He had broken a toe and hadn’t noticed it until he looked down one day and said, “Gee, that toe isn’t supposed to be at a right angle to my foot.” (Actually, I’m pretty sure he didn’t say “Gee.”) And, here’s the scary part: he’s one of the smartest people I know … way smarter than I am.

I was determined and committed to being fit and staying healthy. So I ate “right,” exercised and kept my weight close to my “race” weight” (the weight I needed to be in order to meet my triathlon and biking goals).
How did I know that something was wrong, I mean really, disastrously wrong? Well, the strange visions I was experiencing, which I had initially ignored, were certainly a clue. It’s the kind of clue that jumps up and down yelling, “Check me out, you dummy!”

But I was focused on my work. I continued to finish up a freelance marketing project and look for another consulting assignment. I yearned to be working at a start-up company with some spiffy new invention or intellectual property, or at some green technology company that was riding the wave of environmental investments. I couldn’t wait to be flying around the country “with my hair on fire” visiting prospective clients, briefing analysts, and supporting sales cycles. Work was exciting, rejuvenating, and fulfilling.
Had I stopped and started a little self-examination, I might have pieced together some clues that, in hindsight, were pretty damn obvious. At the beginning of the year, for example, I started walking into a corner of our massive kitchen island with my right thigh - bam! It’s a thick sheet of black granite with natural whorls and swirls that weighs a ton or two. So when you bang into it going full tilt towards the TV in the front room, it hurts. It’s also hard to miss seeing - you could spread out a blanket and do a yoga lesson on the thing. I banged into it a number of times. So even though I never heard of anybody else just whacking the corner of their kitchen island with their hip on a fairly regular basis, I just passed it off as encroaching middle-aged feebleness.
More expensively, I started scraping the right side of my old ten-year-old black car against the inside of the white garage door. I quickly learned that the absolute minimum cost of fixing scrapes of that sort cost a grand, sometimes more. Since my car was black and the garage was white, the scrapes were pretty ugly and obnoxious. In addition to the money that was just plain wasted, I was disappointed in myself: how could I keep making the same mistake? I told myself that we had an old, tight garage door opening and that the ninety-degree turn from the alleyway took some mental acuity. Of course that didn’t explain why, after years of pulling into the garage without a problem, all of a sudden I started scraping the car. it also didn’t explain why my wife never scraped her car.

As the “man” of the family, I was the designated driver for almost every family excursion. Lately, however, I kept getting these little shrieks and tensed muscles from my wife when I drove. Geez, that was annoying. At the time, I had a good driver’s record, no accidents for years. So, of course, I thought she was just getting older and more jittery - old age, you know? Looking back, I now realize that she probably had great reasons to close her eyes, wince and verbally jab me on my driving.
The thought that I just couldn’t see well out of the lower right-hand corner of my eye was simply not something that ever occurred to me. Why? I don’t know. The idea of going blind was just plain on the outside of the front door to my self-image, no matter how loudly my increasing blindness knocked, kicked and scraped to get in my consciousness.
In late August, though, I had one day where I saw these disconcerting and disconnected-from-reality amoebas five times. Even for me that seemed a bit excessive. So, of course, i waited until after the North Shore Century ride in early September to dial up my physician. My general practitioner did what any good GP does; he packed me off to an ophthalmologist.

So on Thursday, September 23, I went to see the ophthalmologist. My first impression of his office was that it looked like something straight out of a swedish movie about unhappy people trapped in bland lives they didn’t want to live. The waiting room added to that effect by displaying several abstract paintings in murky blues and purples that seemed to be drawn by patients with deep psychological issues.

I was nervous, so I thumped my fingers on the finely rendered Naugahyde chair until my name was called. I was shown into a room that looked like a set from the movie "The Silence of the Lambs." It was outfitted with a machine that appeared to be designed for three-eyed aliens, and tools that looked like they belonged in a dentist’s office. This, of course, did nothing to put me at ease.
The doctor looked very professional, complete with lab coat, country-club tie, and an expensive pen. He was indeterminately middle-aged, which is a good thing in doctors: too old and you worry that they’ve forgotten things; too young, and you worry that they haven’t learned enough to forget.

I guess at this time I should confess that i am squeamish about my eyes. Watching my wife put in her contacts gives me the willies (the “willies” are a technical term for describing the feeling you get when your folks take you to a haunted house or scary roller-coaster ride about five years before you are emotionally ready to go). Her ability to touch her eyeball with her finger runs shivers up my spine. (I think she mostly does it to torment me.)
So I normally flunk the eye test where a technician touches your eye with a strange device that measures something important to keep you from developing some debilitating eye disease. Why do I flunk? Because I can’t keep my eye open long enough for the doctor (or nurse or strong, hairy orderly) to get a measurement.
Ensconced in his clean, tidy, and vaguely sinister office, the doctor (I’ve repressed his name and most of the unsettling experience) told me that I needed to come back and see another doctor who specialized in a different but closely aligned field.
So the next week (in my mind there was no hurry), I visited this new  doctor in the same somehow disquieting office. Here, a medical technician gave me a Visual Field test, essentially a fancy and, I suspect, expensive eye exam. In a Visual Field test, you look into a TV screen that makes you feel like you’re viewing a bad, old-time sci-fi movie. Lights flash on and off in various areas, and you’re supposed to click a button every time you see a light flash.

Apparently I flunked the test, or at least an important part of the test. How did I know? Because the doctor recommended that I have a magnetic resonance imaging (“MRI”) test. For the uninitiated, MRI tests are normally scheduled for folks who have something lousy going on inside.

To take an MRI, you go to a lab hidden deep in some medical facility where they store the really high-powered medical equipment. Over in a corner you’ll probably see a lab technician peering at a back-lit green screen that reminds you of the sonar technology they must use on a nuclear submarine.
You are instructed to take off all your jewelry (this took about a nano¬second) as the technician asks you questions like, “Do you have any metal in your body?” “Have you ever had a joint replacement using metal?” “Does being enclosed in very small space and having abnormally loud sounds clang and bang around your head drive you berserk?”
While I may be wrong, I think that no matter what your answer is, you are then told to lie down on a cloth-covered surfboard at a perpendicular angle to the MRI. it’s so the technicians can easily slide you into the machine and bombard you with x-rays. I’m just guessing on the kind of rays, they could be beta rays for all I know. (Actually, I was hoping that they weren’t beta rays because, as everybody who’s ever worked in software knows, the “beta” version is pretty iffy stuff.) After you lie down, the technicians strap you down and quickly run out of the room. No, it isn’t reassuring.
The machine started and the vibrations reminded me of some large ship leaving port. it began as a low hum that pulsed and shook. Abruptly, the promised clanging and banging commenced at erratic and irregular intervals. It felt as if something was really wrong with the machine, like maybe they forgot to add oil during the last seventy-five-thousand-mile overhaul or the thing needed new brake pads.
While I half-expected the MRI to explode or shoot me out the front like a torpedo, it didn’t. And I walked away thinking, “Boy, I’ll bet I won’t have to do that again.” Little did I know that I should’ve quickly joined the MRI frequent scanner club for the “points.”
The MRI test was a bit unnerving. It was the first time I starting believing that maybe something was really wrong. When I got home, I took Louis for a walk. Louis was our half German shepherd, half Labrador, all lovable dog. We went for a walk almost every day I was in town. When I was in training for my triathlons, he ran along. When Barbara and I went for a walk, he came along. When I needed to be alone with my thoughts, he came along. I was never alone when he was around.
He was also a hunter. Any critter that dared to land, run or skitter across our yard was fair game. He chased squirrels, rabbits, chipmunks and caught some of each. He also caught a raccoon in our backyard and fought him to a draw (after which I took him to an emergency animal hospital for various stitches and shots). He loved us and we loved him.
Shortly afterwards, my wife Barbara and I went to the ophthalmologist’s office to see the results of the MRI.
Barbara is a very steady soul to have with you at times like these. While she will yell and scream and turn red when the Chicago Bears have a dumb turnover or stupid penalty, she is relatively unflappable when somebody had a serious health issue. Growing up in the Detroit area, she paid her own way through college by working two jobs in the summer and working part-time jobs during the school year. Unlike me, she looks about ten years younger than she really is. She’s an attentive mother, loves Project Runway, and eats less than most birds. We’d been married over thirty years and neither of us had yet had a major health problem.
The ride through the tree-lined streets of Chicago’s north shore suburbs to the ophthalmologist’s office, though, seemed longer that the four or five miles than it was. My memory of that ride was that we talked about everything except the reason for the ride—the nice fall weather, possible movies we should go to, and maybe the piles of leaves in the gutters above the third-floor attic.

But I knew that, this time, something was wrong, something that wouldn’t be easily fixed. My fear was that I had some horrible eye problem that would require surgery. My parents had both had cataract surgery and it sounded unnerving.

So I stewed on the idea of eye surgery (What else could it possibly be?) during the drive and, in the process, torqued my nerves so tight that I would’ve needed a socket wrench to loosen them.
We took an elevator up to the ophthalmologist’s office and, unlike previous visits, we were quickly shown into an examination room.
Almost immediately, the doctor entered the room and shut the door. Then in a no-nonsense tone of voice he told us thatI had a brain tumor and he could recommend a very good neurosurgeon.
My tongue tied itself up, then slightly loosened, and I sputtered out something like, “Brain tumor?” I was stunned. I was shocked. I wasn’t even sure what a brain tumor was other than bad, very bad.
What do you say to somebody who’s just told you that your life is going to change, for the worse? “Thanks for the really bad news?” “Please excuse me while I start to freak out?” “Where’s the scotch? And not the Black Label, I  want the really good Blue Label stuff!”
I have no real memory of what was said other than some comment about sending me to a neurosurgeon that specializes in brain tumors.There was a painful discontinuity about hearing life-changing news on an absolutely beautiful autumn day. The warm fall weather hadn’t changed. The streets were teeming with students who just escaped from grade school. But I had just heard the worst news I could ever remember hearing. And the only people who knew it were me, my wife, and the ophthalmologist’s medical team.

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