Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains ...
— Paul Simon, 1964
“The Sound of Silence”
My currently favorite T-shirt says, “The tumor inside my head has done no bramage to my dain.”
I found it on a website created by the family of Matt LaRocca in Tennessee. Matt was 11 years old last year when he died from a rare and inoperable brain stem tumor. By all accounts, he was a brave young man who faced his future with grace and good humor.
When I read about people like young Matt or the resilient Edy Sundby, whose story is in the current issue of AARP The Magazine, I feel a connection that transcends time and space and reminds me that my own disease is neither unusual nor of compelling interest to anyone but me and my family and friends.
But I will tell you about it because I strongly believe in being open and honest about health issues, and I think the more we talk about them, the better. No more whispering, please. Cancer is not shameful, it is simply unfortunate.
You might recall that I wrote about battling prostate cancer last spring. So far as we know, the treatment was successful, as was treatment for skin cancer during the same period.
But in the weeks leading up to Thanksgiving, I found myself developing a weakness on my right side that was getting worse every day and caused me to fall twice, once while carrying a 25-pound turkey up a flight of stairs. (The second time I wrenched my great toe and it turned a brilliant purple. I told a doctor it looked like a pickled beet, and he said I was making him hungry.)
One of our reporters explained to a concerned colleague that I had an old pirate injury. It was as good an explanation as any other. I’d been blaming it on a pinched nerve and was taking ibuprofen, which is what I did when I had a pulled muscle or an aching something.
It wasn’t working this time, and I went to a doctor who checked my heart, told me I had not suffered a stroke and referred me to a neurologist.
The neurologist’s office gave me an appointment that was a long way off, causing me to question whether this wasn’t serious enough to move me up in the queue. I was assured it was not. I felt a little better, but it was a wrong-headed notion.
So I continued to struggle with walking, typing, signing my name, right up to the day before Thanksgiving when I couldn’t make it to work. On Thanksgiving, a health professional friend joined us for dessert and was appalled at my condition. The next day she called to insist I go to the emergency room.
The week that followed is something of a blur, most of it spent in the intensive care unit of the neurosciences department at Ellis Hospital.
The diagnosis came soon enough. A cancerous lung tumor had metastasized in my brain. The brain tumor on the left-side parietal lobe was surrounded by edema, which caused pressure that affected my right side motor skills.
I was placed on steroids immediately to suppress my body’s response to attack — specifically to reduce the pressure on my brain. Within a few days I began brain radiation treatments and, as of last week, I had completed all 10 of them. Down the road, an MRI will determine the radiation’s effects.
On a Saturday after I’d left the hospital, our friend Diane DeMeo arrived at our house and buzzed my hair down to stubble. The doctor assures me my hair will fall out from the treatments so I wanted to be almost there before that happens. I like the streamlined look, and more importantly, my wife likes it. I keep remembering the opening voiceover in “The Six Million Dollar Man” — “We can rebuild him, we can make him better than he was.”
In January, I will find out what the next step in treatment will be. Chemotherapy for the lung tumor is likely.
Meanwhile, I will continue to be rehabilitated. I learned how to do stairs all over again with the help of the physical therapists at Ellis, and became quite adept with my spiffy new walker, which I no longer need to use. Because I’ve had “a neurological event,” I must get recertified to drive.
As my steroids dosage is reduced, we’re watching closely to see if any symptoms return. So far they have not.
I’ve returned to work, and that’s given my psyche a great boost.
I do not know what the long-term outlook is or even whether there is a long term, but we’ll face whatever’s ahead with hope. The doctors say the treatments are trial and error.
I am humbly grateful for the incredible support network I discover I have among family and friends, including our Stockade neighbors, and among my co-workers.
The medical care I am receiving is first-rate.
Wife Beverly has been a tiger of an advocate in all of this, and I am most fortunate. Patients with strong advocates do better than those without.
Her take on it is that we’re all terminal.
“The difference with us is that we know the dragon’s name.”
Read about Edy Sundby at http://tinyurl.com/d46x372. Learn more about Matt LaRocca at http://tinyurl.com/d5z8lke. Learn more about brain tumors at the American Brain Tumor Association’s website, www.abta.org.
Irv Dean is the Gazette's city editor. Opinions expressed in his column are his own and not necessarily those of the newspaper. Reach him by email to firstname.lastname@example.org.