July 2, 2017: One Hundred Days

Sunday, July 2, 2017, we went to an early 4th of July celebration. When we left, the friends we were with wished us good luck at the MRI scheduled for the next day. We said thank you, but I wasn’t worried. I was sure—unshakably sure—that we didn’t need luck.

And it wasn’t simply hope propping up that arrogant certainty. It was practicality. I believed, even in the very unlikely event that the poliovirus didn’t cure Matt, we still had months and months of good (albeit, slightly not himself) days ahead of us. Obviously, if we’d gotten eight months between tumors last time, this time, with the poliovirus and Avastin on our side, we had at least eight months before the next bad MRI. At least.

Turns out, we had just about 100 days.

I didn’t realize, until today’s post, that only (about) 100 days separated the poliovirus and the MRI that changed it all. And I wouldn’t have realized it if not for the fact that today is my 100th post about our year of hope. One hundred days ago, I wrote my first post, beginning with the week we went to Duke for the poliovirus trial.

One hundred days seems insignificant. One hundred days is barely a dot on the timeline of eternity, certainly too quick a turnaround for a MRI to go from full of promise to concerning.

And yet…

One hundred days ago I started writing a blog because I knew I had to get our story out of my head. I started writing a blog that I thought might keep me sane and keep Matt’s memory alive for G and H. And in one hundred days, my little blog has grown in ways I never imagined.

I’ve been surprised, almost daily, in seeing through hindsight how every day impacted our story. How every moment played a part in our ending. What if that well-known Duke doctor hadn’t asked for a second MRI, which caused a crucial delay? Would Matt then have had time to enroll in a clinical trial at Duke? What if Matt had been sorted into the Nivolumab treatment arm of the clinical trial at Hackensack? What if Hackensack had agreed to do the Avastin and we never met the doctor at Columbia, who cried with me the day the final MRI was read? What if even one day changed course? Would the story have ended differently?

Despite how the previous paragraph reads, I don’t dwell in what ifs. I can’t. I can’t linger in “what if” and also survive post-hope. Because “what if” questions steal the air from a room, and in post-hope, the most important thing is to breathe.

Which leads me to the second most surprising turn this blog has taken. Almost more astonishing than realizing the impact of every day on our story, is the way post-hope has crept into the narrative, become a story in its own right. What started as a way to simply recount the hopes and heartaches of last year, has also become a way to chronicle the journey the kids and I are on in post-hope.

It’s a journey that’s only just beginning to take shape, a bare glimmer. And, like the story of hope, I may not be able to truly see the shape of the post-hope story until I look back in hindsight. I can see the outline forming, though. Yesterday I wrote that G, H, and I toured summer camps. But that’s not the full story of the day. The full story is G climbed to the top of a tree house, despite her paralyzing fear of heights, and H chose to go on the kids’ tour, despite his habit of clinging to my leg around strangers.

The outline I see forming about the story of post hope is there, in the courage. Because often post-hope forces us to step out of our comfort zone. Sometimes, we are forced out and crawl right back in. But sometimes, we don’t crawl back in, sometimes we face the tree house or the group of strangers, and we learn we are stronger and more capable than we ever dreamed.

One hundred days ago, I didn’t know what I’d do with the story I started writing. I didn’t know if I’d have the courage to share with anyone. One hundred days ago, I began writing a blog that has, to date, received more than 7,500 visitors, more than 61,000 views. One hundred days ago, I stepped out of my comfort zone, opened up our story, and learned I was more capable than I dreamed.

And, one hundred posts later, I want to say thank you to everyone reading along. I am overwhelmed by the support for this little project and so truly, unspeakably grateful to have this chance to share Matt’s story.

5 thoughts on “July 2, 2017: One Hundred Days

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