August 19, 2017 was the first time the nerves and uncertainty and isolation of Matt’s disease overwhelmed me and I reached out to brain tumor caregivers for help. At 6:16 a.m., I posted a desperate message on the brain cancer forums asking for any insight into the reality of Gamma Knife Radiation. I wanted to know what to expect during the days of the procedure, what side effects might strike, and frankly, whether the procedure had any chance of actually working. (CCNU had failed. I needed more than Duke’s word this time to reassure me this treatment would work.)
While I waited for replies to my post, I took the kids to an eye doctor appointment with me. Matt was home—August 19, 2017 was a Saturday—but he was having a difficult morning (more headaches) and I didn’t want to burden him. I bribed G and H with gummy bears and Chipotle and they behaved like angels as the doctor examined my eyes. The story of today illustrates another step in that cruel transition. Slowly, so slowly we didn’t notice, Matt stopped spending time with just G and H. The “we” that was made up of Matt, G, and H, was forced to erode. Not because it’s what Matt wanted, but because his body and brain were betraying him.
At some point, the radiation team did call us to discuss scheduling. Matt and I told them that we had a family vacation—with his parents, sisters, and nieces—planned for the last week in August, and we’d obviously skip the trip if we had no choice, but that we’d love to try and find a way to not miss it. The radiation team understood. They told us they needed Matt for just a day on Wednesday—for prep—and then they’d work out some plan so that he wouldn’t have to miss the entire shore week. In hindsight, a part of me believes the heartbreaking subtext in the conversation was that they weren’t sure Matt would get another family week down at the shore, and he couldn’t afford to miss any day that would make him happy. In hindsight, we were having a quality of life conversation and I never realized it. But maybe that’s just that cynical Post-Hope lens talking.
Originally, we’d had plans to go out with friends that night. When Matt’s symptoms worsened and we learned we were in for more treatment, we decided to amend that plan. Instead of a night out—those were a thing of the past by August 19th—we decided to go to the lake for the afternoon with those same friends. I worried how Matt would do—his morning had been so difficult, he’d fallen just the night before—but he took an Extra Strength Tylenol and seemed, genuinely, kinda fine. He managed to find a little joy and a little laughter in a day and a week that had been filled with anxiety and fear.
In Post-Hope, G, H, and I are gearing to go on the same family vacation at the shore with Matt’s parents and sisters and nieces—and new nephew. G has already sworn that she’ll be too sad to leave her room. (Although, she’s since been convinced to leave her room for “fun” activities only.) H has decided he’s going to be fine because he’s “just not going to think about it.” I imagine the truth for them will fall somewhere in between locking themselves up and not thinking about it. I imagine it will be hard for all of us, that we won’t be able to walk into a coffee shop without being struck by a memory, that the grief waves will roll in as relentlessly as the actual waves. But I also know that there’s value in finding light in the darkness, finding joy while wading through fear and anxiety and heartbreak. It’s an example Matt set time and time again last year, and a legacy worth preserving.