April 6, 2017 was not the first time Matt had to be on Dex and it would not be the last.
Dexamethasone, or Dex, is a standard prescription in the world of Glioblastoma and one of the first medications we were introduced to after Matt’s craniotomy back when he was diagnosed. Its purpose, as I understand it, is to help control brain swelling, a common concern after any kind of procedure in your brain, but especially after treatments like polio when the patient’s immune system is awakening and hopefully roaring to life to beat back the cancer cells.
But like any steroid, it comes with some wicked consequences. There’s the hunger.
And the anger.
But let’s start with the hunger. When Matt woke up from his biopsy the week before, he woke up starving. Understandable. He hadn’t eaten all day. He ordered, if my memory is correct, two meals from the hospital food services. But the hunger didn’t end there. He ordered two more meals for dinner, then two more for breakfast the next morning. He began to eat so much in one sitting at such frequent intervals that I was afraid the neurosurgeon had accidentally damaged something in Matt’s brain (as if there was some hunger regulation button that had been accidentally turned off during the biopsy). For weeks this continued and I didn’t believe it could be the Dex, not to that extent; surely medicine alone couldn’t be responsible for his impossible appetite. I was convinced something had altered in Matt’s brain. For his part, Matt was overjoyed at his newfound appetite; he was still trying to gain back the weight he’d lost on chemo. It turns out that the Dex was the source of the appetite because when he stopped the steroid for a while, his appetite returned to normal.
Then the anger. Much like with the voracious appetite, our first experience with Dex anger in June 2016 left me terrified that something had been damaged in Matt’s brain. When he was discharged from the hospital that first time, he wasn’t the man I married and he wasn’t the father that G and H knew. His fuse was short, his mood dark, and his temper fierce. And the fear was: this isn’t a side effect of the medicine, this is what’s left after a tennis ball sized tumor is removed, this is the new Matt. How could one know? The doctors said the tumor had been growing for quite a while. What damage could it have wrought in that time? What damage could the surgeon’s scalpel have done during the resection?
But as we tapered the steroid dose, his anger cleared and Matt recognized he’d been insanely angry and hadn’t been able to control it while on the high dose of Dex.
We didn’t know then, but anger would be a recurring theme in 2017 and I’ll end up coming back to if often as I look back on this year of hope. Throughout the next twenty months, it became a balancing act to determine the highest dose of Dex Matt could tolerate without descending into rage. Until near the end, when desperation kicked in and nothing mattered except bringing back a little bit of Matt, anger, hunger, and all.