A few nights ago I got up to have a bowel movement, a thing of great emotion these days; joy when it all goes well; deep, deep despair when all that my colon brings to the table is a series of mediocre farts.
This night was different. It was late, after midnight and I was in a hurry to get to bed and crack open my latest sociological study of German acquiescence to Nazi rule – it’s what I read so sue me. On a recent trip to Berlin I was beyond proud to walk Hannah Arendt Strasse.
I sat. I squeezed. It worked.
Then a moment later I was thrown against the wall by my own private tsunami of pain. Wave after wave of intense terrifying pain, each wave of greater strength than the previous so by the end I wasn’t just moaning I was crying, for relief and out of fear that I wouldn’t get any.
And I didn’t. We followed night nurse instructions: extra methadone, two tabs of oxycodone, gabapentin, a wash of cannabis oil, more oxy, more gaba, another drop of oil until I was just as worried about overdosing as I was of the pain.
And the pain kept on coming, wave upon wave.
It was indescribably terrible.
Later lying in bed, too tired to sleep, I tried to think what else could possibly feel this bad or even worse. A beating with a bundle of rebar? Lying trapped in a car after a horrific accident, the kind where you wonder “how could anyone survive that?”
Really, it was all a fake game. I will never feel more pain than I did until I do.
And this game hides another falsehood. I’m not really afraid of more pain. I’ve made it through everything that’s been thrown at me; huge operations, surprise trips to the ICU, hospital born infections; near death experiences…
It’s a long list I’ve accumulated in the eleven years since my chordoma diagnosis and the truth is I’m secretly proud that I’ve dealt with every damned thing thrown at me.
After the pain settled down Thursday, I was admitted to the Cancer Clinic for a weekend stay. As I write I’m looking at the wonderful view of the northeastern mountains from room 532 while my docs figure out how to manage the pain, when and if it returns.
They also want to determine what is likely to come next. As the pain settled down the use of my left arm and leg went with it. The pain turned out to be a symptom of my spinal tumour destroying the nerves that work the arm and leg on my left side.
That’s my real fear; first the left…
then the right…
and finally the core.
This is likely the beginning of the end.