I sent this text to Matt at about 8 p.m. on May 28, 2017: You okay? This was after another easy day of friends and grilling and acting as normal as possible.
When I think about May, I think about Avastin and filling out forms and cursing doctors (sorry, but true). In my memory, May was symptom free. It’s only in re-reading the texts between Matt and me that I realize that wasn’t quite true. A single symptom appeared near the end of May, one particular indication that something was wrong.
When I say something was wrong, I’m being intentionally vague. The desire for honesty, to give an open account of our fight against an aggressive brain tumor, is balanced against the desire to preserve Matt’s memory. There are parts of this story that I haven’t decided how to share, or whether I should share at all, and I didn’t think I’d reach any of those parts yet. Honestly, I’d forgotten how early this symptom appeared and I thought I’d have more time to decide. For now, for purposes of May 28th, I’m going to remain vague. Because this early in our story, I didn’t know (and truthfully still don’t know) if what I’d noticed was a symptom of tumor growth, a side effect of Avastin, or my own overdramatic brain working in overdrive.
When I asked Matt about what I’d noticed, he had an explanation. He told me everything was fine, and he felt fine, and I shouldn’t worry. But he added, as he always did, that I was free to tell the doctors and nurses anything I wanted.
So I told them, at every appointment, with a sideways glance toward Matt and the admission that I couldn’t confirm something wasn’t quite right; It was only a feeling I had because I knew Matt’s patterns of behavior and this didn’t fit the pattern. The nurse or doctor would ask Matt and he’d tell them everything was normal and the issue was dropped by us all. Until the next time. At some point I started qualifying my concerns with “I may just be the crazy wife, but you should know…”
Because I would have rather been the crazy wife than the wife who’d missed the symptom that meant the difference between life or death.
It’s hard not to look back and wonder if this was that life or death symptom. It’s hard not to jump right back into the days when one MRI revealed a tumor in the base of Matt’s spinal cord and another revealed the tumor had infiltrated the bones of his spine, and all I wanted to do was scream at all the doctors who hadn’t listened to me every time I started a sentence with “I may just be the crazy wife, but…”
I’ve said before that I wish there was a way to soften the sharp edges of this story. I have a feeling this post, with all its vagueness, may have more of a jagged edge than I realized when I started to write (whoops). So let me try and soften this particular sharpness a little by telling this truth: I don’t know if what I saw on May 28th was tumor or Avastin or my overdramatic mind. I only know Matt and I had a good day on May 28th; the first thing I remember about the day is not the symptom, but the fun. And I can’t regret any day like that; I can’t regret anything we did or didn’t do that led to other days like that, either.