Glioblastoma – it’s not a word that exactly rolls off your tongue with ease and, in fact, it is a word that is like a secret handshake of grief among a select few people. The people who are familiar with this word are, mostly, not survivors but those close to them. That’s because the survival rate for those with inoperable glioblastoma is about 15 months for those who get treatment (chemo, radiation, surgery), and even less for those who aren’t treated. The rare few may survive up to five years. These cancerous brain cells replicate rapidly, and they spread in a star-like shape through the brain, often inaccessible to surgeons. Perhaps the one positive about this kind of cancer is that, in general, it doesn’t linger very long, killing its host swiftly; there is little or no “remission” with this cancer: instead, it’s like the fingers of an evil hand that stretches out into the brain and kills what it touches. It is relentless.
My son died of a glioblastoma in 2016. Within the space of thirty-one days, he was diagnosed, treated (minimally), and died. The treatment consisted of operations to simply relieve the pressure of the constant bleeding in his head. There was no other treatment: no chemo, no radiation; there were only procedures to keep him functioning and without pain – a feeding tube and drugs that mostly sedated him. The oncologist (who only consented to see him two weeks before he died) provided no relief, no hope, no solution. Luke was a “lost cause,” unworthy of the doctor’s time or expertise because there was no cure, no remedy.
I had always thought that knowing approximately when one was going to die would be a good thing: it would give the person the opportunity to fulfill lifelong dreams, to complete bucket-list items. But this is only true, I’ve found, if one is awake, aware, healthy in those days before dying. My son simply lay in a hospital bed, his head bandaged and stitched, mostly unconscious, and incapable of any action at all. He was a prisoner of his cancer, and I was his helpless witness. There is so much to ponder here: an unexpected death, a hopeless setting, an environment that lacks compassion, and the nature of grief – how it grows like that glioblastoma and touches every part of one’s life. When my son died, he was released; I am not.