Sunday, October 30, 2011

How do you tell somebody you have a brain tumor? (Part 1)

The phrase “brain tumor” is scary and difficult to slide into any low-key, “over-the-fence-with-the-neighbor” conversation.  I imagined the following casual conversation when running into a friend at Starbuck’s:
            Me: “Hey Fred, how’s it going?”
Fred: “Going great!  Our daughter Mary just made the high school jazz band as the bass player - the only student to ever be picked as a sophomore.”
Me: “Congratulations!”
Fred:  “And you, how’s it going?”
Me:  “Well, I’ve just been diagnosed with a brain tumor—the tumor’s as big as your wife’s fist.”
Fred:  “No shit.  Well…how about them Bears?”

And with your more competitive acquaintances, I could imagine the following conversation:
            Ashley: “John, how are you? It’s good to see you.”
            Me:  “Not as good as I’d like to be—I’ve just been diagnosed as having a brain tumor.”
            Ashley:  “Really, what kind?”
            Me: “It’s a Grade I meningioma. It’s about as big as your fist.”
Ashley: “Well, my brother Dave has a Grade III metastatic brain tumor.  It’s a gliomas – we’re very worried about it infiltrating adjacent brain tissue.  You should be grateful that you only have a Grade I meningioma!”

Thursday, October 27, 2011

The Good Doctor

We had been referred to Dr. Gail Rosseau. Her online biography listed a stack of degrees, speaking engagements, associations, and awards. What I didn’t know was that, according to a Chicago Tribune article, at one time she had been on the President’s short list for Surgeon General slot. Even without knowing that, her bio told us that she was what we needed.  We scheduled an appointment for her earliest availability.    

Dr. Rosseau’s office was maybe 10 – 15 minutes away from our house.  While it had the same vanilla furniture that the ophthalmologist’s office had, the place bustled.  Patients were zipping in and out. Nurses were walking purposefully. The receptionist was awake and pleasant. These weren’t characters out of an unhappy Swedish movie; these were medical practitioners with important work to be done. I felt reassured.

How does one describe Dr. Rosseau?  I think the answer is with lots of adjectives and exclamation points.  While physically she’s a short blond woman with impeccable taste, her PRESENCE is nearly overwhelming.  She strides into the room, grabs your hand, and introduces herself with a strong, hardy voice: “I’m Gail Rosseau and we’re going to take good care of you!”

And if she didn’t literally say that, I felt as though she had. She was strong. She was confident. She was everything you would ever want in somebody who would be cutting open your skull and scooping out a brain tumor.  From that moment on, my wife and I have referred to her as “The-Good-Doctor.”

She whisked us into a viewing room that had an entire wall which was backlit by some special medical lights.  She set a large piece of sturdy medical film on an imitation wood railing.  The film looked like an X-ray of a skull.  In fact, it was my skull. Dr. Rosseau then said something like “See this big black area here—this is a brain tumor.”

The black area looked like the biggest thing inside my head. This is commonly referred to as the “Oh Shit” moment. You can’t run away from it, you can’t hide from it.  It’s there inside your head no matter where you go.

I mean, we all know on an intellectual level that we are mortal, but being shown that picture of  a dark tumorous mass crushing the rest of my brain, well it had the emotional impact of being hit with a sledge hammer. It hurt.

Brain tumors, in general, are not that common. According to the American Brain Tumor Association (“ABTA”), “for every 100,000 people in the United states, approximately 209 are living following the diagnosis of a brain tumor.  This represents a prevalence rate of 209.0 per 100,000 person years.” It’s like the odds of winning a lottery…only this is a lottery you don’t want to win. “The-Good-Doctor” believed that my tumor was meningioma, which, in the world of brain tumors, is pretty common. 

Roughly 32% of all brain tumors are a meningioma. If you have to have a brain tumor, this is the one to have: it’s slow-growing, benign (i.e. not cancerous) and rarely spreads to other parts of the body.  Said differently, brain cancers are really, really, really bad.  My meningioma tumor was merely “bad”.

I don’t remember much else about the meeting.  She had a very competent assistant. They gave us some guidelines for the next few weeks prior to surgery. The immediate issue, of course, was that now we had to tell everybody.

Tuesday, October 25, 2011

Welcome to the rest of your (fractured) life!

Shortly thereafter, 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 a fabulous 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 the north shore suburbs to the ophthalmologist’ office, though, seemed longer that the four or five miles that it was. My memory of that ride was that we talked about everything except the reason for the ride – the nice the 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, 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 that I had a brain tumor and he could recommend a very good neurosurgeon.

My tongue tied itself up, 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 forever…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 discontinuity about hearing life-changing news on an absolutely beautiful autumn day.  The warm fall weather hadn’t changed. The streets were teaming 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.

Monday, October 24, 2011

A vision issue?

So on Thursday, September 23th, 2011 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 Silence of the Lambs which 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 but put me at ease. 

I seem to remember that 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.

He had me look into his shiny, hand-held, chrome-colored flashlight.  He peered from the sides and looked at my eyeballs. He squirted ointment in my eyes and asked me to read charts—my eyes, however, felt like they just signed up for “Hallucinations-R-Us.”
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 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.

I guess it’s no surprise, then, that 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 strong, hairy orderly) to get a measurement.

Ensconced in his clean, tidy, and vaguely sinister office, the doctor told me that I needed to come back and see another doctor who specialized in a different but closely aligned field. (If you reread that sentence you’ll understand that I had no idea what he said or meant.)

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 machine 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.

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 an MRI.  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 backlit 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?” and “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 lying down, the technicians strap you down and quickly run out of the room. No, it isn’t reassuring.

The cloth-covered surfboard glides you into the middle of the MRI. You are told to be still, ignore the upcoming “end-of-the-world” sounds, and relax.  This has the same effect as being told “relax, this won’t hurt at all,” when you know that it really will hurt.

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 was half-expected the MRI to explode or shoot me out the front like a torpedo, it didn’t.  And I walked away thinking, “I’m glad that’s over with.” Little did I know that I should’ve quickly joined the MRI frequent scanner club for the “points”.