May 22, 2017 could have been a bad day. Thanks to the email from Hackensack, we could have spent the entire day questioning our decision to stick with Duke and the polio virus and Avastin. We could have spent the day obsessing over the fact that Duke had speculated Matt had one of the more aggressive tumors.
We didn’t. That simply. Matt and I didn’t discuss anything medical over text or email. I made an appointment with an electrician. The only picture in my phone from that day is of the white sneakers G needed for cheerleading. A friend texted me and asked if we were okay about Hackensack’s decision or worried over the concerns they’d emphasized, and I said: nothing has really changed.
Fifty-eight posts into this project, almost two months of reliving our story, and I am still amazed by how wildly, magnificently hopeful we were every single day despite the warning signs.
Back in March, I referenced the 60 Minutes episode titled, Killing Cancer, which took a look at the polio virus vaccine. I still have the tab open in my browser with the transcript of the episode that aired in 2015. (Maybe time to close it?) Probably somewhere in my mess of saved links I have the 2016 episode, as well. What I did not save were the flood of articles that were published after CBS aired these episodes. Most memorably, an article that broke down the episode and another that called the 60 Minutes story irresponsible. I read them all way back when and then pressed the little red x to close them. That simply.
Cure and miracle. Those are the words I took away from the 60 Minutes special, though the doctors very carefully work to lead the story away from those grand promises. They did the same in real time in the exam room. Whenever I said cure, the doctor would put up a hand and tell me she didn’t say cure. Funny enough, that’s all we heard, anyway.
Because we chose hope, but it wasn’t the only option. In writing for these last two months I’ve often thought about how it would have looked if we’d been less hopeful and more realistic. Did we miss out on something extra because we let ourselves be blinded by the words miracle and cure? If we let ourselves believe there was no next year, what would we have done?
My first thought was we would have traveled. Gone on an epic vacation and seen parts of the world we’d only ever heard of before. But then my second thought was: did we really want that then? We did try to focus more on experiences with the kids. We scheduled a handful of vacations, most of which were canceled because Matt got too sick too fast. And, in theory seeing the world sounds nice, but what Matt and I wanted, most of all, was to wake up and go to work and worry about the electrician and stress over finding the right white sneakers for cheerleading. We wanted to watch Game of Thrones, complain about our untrained dog, and text bad jokes to each other. We wanted only that pre-cancer life we built for ourselves.
I’m sure there’s some balance between being realistic and being hopeful. I know we never found that balance. But I don’t regret not going on the epic vacation or not seeing any option besides hope. I am grateful that pressing the x, choosing to only hear the words miracle and cure, eschewing realism, let us live the life we loved on May 22, 2017, the one we’d built and the one we didn’t want to lose.