July 4, 2017: The Day After

Until I re-read my text messages with a friend, I had almost no memory of July 4, 2017. I could not remember anything about the morning or the day after we learned we’d failed the poliovirus trial. After re-reading my text messages, I could almost believe the reason I don’t remember is because Matt and I shut down for the day. Despite the hope we’d found in those three rainbows the night before, we were still reeling from news even our darkest thoughts couldn’t have imagined.

How could there be a new tumor? How could we be here, in the trenches of this battle, again?

We ate breakfast at the hotel. I know what we ate because we always ordered the exact same thing from the hotel’s limited menu—goat cheese and spinach omelet for me, eggs over easy with bacon for Matt. We took a Lyft to the Raleigh/Durham airport and our plane took off on schedule. Flight time was one hour and we were halfway home by 10:45. The morning was perfectly normal. And yet, nothing was normal.

A grenade had been dropped at our feet the day before; our world had exploded, and we couldn’t even fight back. All the doctors we wanted to call were closed for the holiday. All the second opinions and schedules and appointments we needed to arm ourselves with were unavailable a year ago today. We could do nothing but sit among the ashes of our life.

Thanks to my text messages, I know we had a quiet day with the kids. Matt’s sister and brother-in-law had babysat while we were at Duke and we spent the morning and early afternoon with them. When they left, we decided not to go to the lake’s 4th of July celebration (neither of us was in the mood to socialize) and we took G and H to see Despicable Me 3. I remember next to nothing of the plot, but my text messages confirm that the kids loved the movie.

I don’t remember what Matt and I talked about that night. I don’t remember what we told the kids, though my guess is nothing, because we still believed, in the very depths of our soul, that everything would be okay. We didn’t have to tell them anything because somehow, Matt and I would get over this bump in the road, just like we’d gotten over every other bump in the road–probably not gracefully, definitely not effortlessly, but with a little laughter and a lot of hope–and no need to worry the kids over nothing. Like before.

I’ve said a dozen times that I started writing to get our story out of my head. Since then, this blog has become a way to increase awareness about the impact of brain cancer on patients and families, it’s become a way to make something good out of all the bad we went through, and it’s become a way to keep Matt’s memory alive—and I can’t describe the delight I feel when people share with me that they feel like they know Matt better after reading along. I’m overjoyed that I could share a little bit of the Matt I fell in love with, the one who made me laugh everyday, and reminded me, daily, that we had something remarkable together.

I will always be writing for the reasons I mention here. But, I need to add a warning now, at this point in our story. The story will get harder to read, heavier to follow. There will be highs and lows, upswings and down cycles, but the highs will never again reach the heights they once did, the down cycles will dip into devastating depths. The victories exist, but they are minor, and I suspect in another life, with a different set of circumstances, those minor victories look more like defeats.

Our story is a brain cancer story, a GBM story with a sad ending. That story alone would be difficult to read. But, sometimes, I can’t help but think our story is something else, too. Matt’s disease progressed in a way that was supposed to be impossible, and for that reason, sometimes I think our story is also a story about a disease that mutated into a monster, the likes of which does not quite have a name yet. (But, as I’ve said, I have a tendency toward overdramatic.) Sometimes I worry our story is full of too much heartache and I don’t want to be responsible for causing anyone else heartbreak. I truly am sorry if it gets too hard to read.

We—I—made it through the worst days of the next 7 months holding on to hope for a better tomorrow. But in post-hope, I know what’s coming in a way I could never have guessed a year ago today. Hope will not change the end of this story. So there must be something else to help make it through the worst days.

And I’m left with the promise I made back in April. There is so much love and light in this story to counteract the darkness. I promise to show it all. I promise to tell a story of love and strength and kindness and compassion, just as much as I tell a story of sorrow.

I hope that’s enough.

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A rock G and H found in the backyard on July 4, 2017.

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