One of the most complicated issues associated with brain cancer is that it’s impossible to tell sometimes what symptoms are tumor related and what symptoms are side effects from a life saving, or life prolonging, treatment. Another one of the hardest things about brain cancer is how, at least for Matt, symptoms could come on so slowly, in inconsistent, micro bursts, and it was hard for me to tell from the outside looking in whether what I was seeing in Matt was a symptom or my own over-critical mind playing tricks on me; He could be off one minute and on the next and I was left wondering if maybe I was just the one off. Both are issues I’ll come back to often as we take this long journey to the end of our story because they are difficult to explain.
On April 9, 2017, Matt and I, and the kids, went to visit my sister, her husband, and my niece. Matt drove and we gave my brother a ride. I didn’t remember the car ride until writing this post, but now I clearly do. I remember gripping the side of the seat as we took a turn at high speed, exchanging looks with my brother as Matt and I argued about something and his argument was irrational, and Matt’s frustration at the GPS, which he wasn’t following for some reason . Obviously it wasn’t one of our best days. In retrospect, it’s easy to say, well, something was brewing in Matt’s head. But in the moment…couples fight (and one person always thinks the other is irrational), people ignore the GPS, and Matt was a notoriously bad driver.
By then, I knew how brain cancer could reach into a person’s personality and twist it into something unrecognizable. Before Matt was diagnosed, our energy had been so off that I thought we were having marriage issues. But then, after the tumor was removed, in those first few days after he woke up from the surgery, it was like a lightbulb had been turned on and my Matt was back.
What I didn’t know on April 9, 2017, was that the first time around, the lightbulb didn’t shut off in a day. It didn’t even dim in a consistent way. It dimmed and brightened and shut off and flashed back on in ways I often compared to gaslighting because I was the one left questioning my own perception and reality. It’s a lesson I would learn and re-learn slowly over the next ten months.