Tuesday, July 21, 2015

“You have a brain tumor”

These are five of the scariest words I know. I know this because I’ve had a doctor say them to me.

The ABTA has some pragmatically helpful advice on what to do after hearing this bad/horrific/terrifying news in a section on their website entitled “First Steps After Receiving a Brain Tumor Diagnosis.” - http://www.abta.org/brain-tumor-treatment/newly-diagnosed/?referrer=http://www.abta.org/

I can imagine writing this page was hard, because almost anything I’d write would be trite, scatological or particularly unprofessional. The ABTA, however, has some really good advice on:
  •  Educating Yourself
  • Seeking a Second Opinion
  • Insurance (These dang tumors are costly!)
  • Finding a Treatment Center
  • Finding Support
Getting back to the importance of “Educating Yourself,” the ABTA website – www.abta.org - has tons of information on all of these topics.

I originally was told by my ophthalmologist who ordered up the MRI that revealed the tumor. Here’s my description of my reaction, excerpted from “Chief Complaint, Brain Tumor” - http://www.chief-complaint.com/

“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 that I 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.”

If you have a description of that moment, the moment you learned you had a brain tumor that you’d like to share, just write it into the “Comments” section on this posting.


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