Empathy for Gord Downie
Like most Americans unfocused on our northern neighbour, I didn’t learn about the story of Gord Downie’s three-week tour and his final performance in Kingston until millions of Canadians were deciding where to watch the nationally broadcast concert. I opened a series of links and discovered that Downie has the same cancer that I do: glioblastoma, a primary brain tumour that has no known cure.
Millions of Canadians may be personally connected to the Tragically Hip through songs they have listened to dozens of times or shows they attended over the last 30 years, but my connection is of a different nature. Two years ago, I underwent the exact procedures Downie contended with before the Man Machine Poem tour. I am in awe of his physical and emotional stamina. And I am grateful for the awareness — and necessary research funding — he has raised for our rare disease.
It’s never a good thing when a doctor is called on to give a press conference to explain the nature of a patient’s disease, treatment and prospects for recovery. It is a testament to Downie’s stature that Dr. James Perry, a leading neuro-oncologist was present for the announcement of the Hip’s final tour to give a detailed account of Downie’s condition.
Perry shared some important details and nuance that are lost in the headlines about a “fatal tumour.”
Let me share what “the standard of care” is like for a patient with glioblastoma, in part because Downie has nobly chosen to let his music speak for him.
As Perry explained, no brain tumours are identical. They vary by location, operability and responsiveness to treatment. But according to Perry’s descriptions, Downie’s tumour resembled mine in many respects: it was located in the left frontal lobe and most of it was removed in an awake craniotomy — a lengthy and complicated operation where the surgeon periodically interacts with the patient to ensure he’s not getting too close to the brain tissue responsible for speech or critical motor functionality.
We are the lucky ones. Others are much older when they develop the disease and don’t have as much strength to respond to treatment.
Or they have a less operable tumour, or no chance of operability. These individuals factor into the overall devastating statistics for glioblastoma, which predict survival rates of less than a year from diagnosis.
Regardless of a successful operation, language and short-term memory deficits are common. Word selection and pronunciation become a struggle. Additionally, the right side of the body can be seriously debilitated. I required therapy to recover from these challenges.
After a few weeks, patients begin a routine of radiation for six weeks and an oral chemotherapy drug. The chemo is less onerous than the intravenous drips that many cancer patients have to endure, but it still produces side effects.
Blood counts have to be monitored closely because the chemo threatens the immune system and exposes the body to infection or illness, especially for some- one active on the road.
During my treatment, I walked to keep my energy up. First it was a mile, then two, and finally three at a relatively fast clip. Courage for me was taking my slow, inflexible body to yoga classes. Six months beyond surgery, I could barely eat at a loud restaurant. For whatever reason, I had a particular sensitivity to noise. At one point, I did not make it to a concert I had tickets for because the prospect of encountering a crowd made me prefer to lie on my couch.
I compare that to Downie and am a little ashamed that he performed for more than two hours a day for two weeks. Some people don’t let cancer get in the way of their passions.
Perry made an important point in his press conference that was not picked up by the media who rushed to condemn Downie to death. Glioblastoma is a rare, aggressive and devastating disease, but if a patient responds well to the initial treatment, the odds of his or her longerterm survival grow.
What keeps me going is the hope of surviving long enough to the point when a new therapy offers the prospect of a cure. And there are some that have shown promise. Perry quietly said “part of our job is to push our patients down the field long enough so that research can catch up with them.” Those are words that I have no choice but to live by.