November 26, 2017: When, Not If

One year ago today, we (our family of four) went to see the movie Coco. Later that night, I texted a friend and told her the movie was great, but it had been a very long afternoon. I didn’t go into detail about the afternoon over text message. Which means, one year later, I cannot say exactly what made the afternoon feel endless. Maybe Matt and I argued? Maybe I was struggling to split my time between Matt—who refused help at every turn—and the kids—who had no one else to turn to when they needed help? Maybe we were simply on edge because, in a few days, Matt would begin a treatment that would send radiation into his entire brain, and not only was the treatment not guaranteed to work, but the side effects could exacerbate all his symptoms.

I truly don’t know.

But I do have an insight into Matt’s thought process during these final days before he began an intense hope-filled effort to treat an incredibly rare progression of Glioblastoma. I texted a friend and told her that Matt constantly made comments about our future that started with “when I’m better” and “when I can drive again.” When, not if. I remember desperately wanting to believe in the future he painted, one in which he was better and he could drive. I remember feeling relieved by his unfaltering positivity and, at the same time, worrying that he wasn’t quite grasping the severity of his diagnosis. Holding two opposing thoughts at once. The contradictory nature of brain cancer.

I wanted him to be wholly and completely positive, because I believed anything else would invite negative energy. (Not logical, but honest.) But I also wanted him to understand the risks and rewards so that I could be sure we were making decisions together, as a team—because the idea that I might be making life or death decisions for him (rather than with him) was too great a responsibility.

When I started this post, I thought I might try to determine whether Matt was fully aware of the severity of his disease progression. But actually, as I sat to write and considered all that I’ve written in the past eight months, I think the truth, whether Matt was aware or not, wouldn’t have changed the way he spoke about our future.

From the beginning, he balanced realism with unfaltering hope. I noted that early on he spoke with frankness about his disease. But I’ve also noted, more times than I can point out, moments when Matt made plans for the future, chose a path because it offered the most hope not the most certainty.  He knew he might only get two years (based on the statistics) but he believed he could beat the odds. He believed in our future. In looking back at all I’ve written, I think from the beginning Matt always understood the risks better than I did, and nevertheless chose to say when, not if.

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