April 24, 2017: Filling the Hours

On April 24, 2017, I called Duke twice. They doubled Matt’s steroid (that dreaded Dex). I asked them to move the MRI earlier. They told me not to panic, to give the steroid time to work; May 1st was only a week away. Only a week. Seven days. A relatively small timeframe in the grand scope of everything. Sure, we could handle a week in limbo. No problem at all surviving seven more days of a decline that was worsening by the hour.

Even looking back, a year removed from all of it, knowing the upswing is one week away, May 1st seems impossibly far off from today. Thousands of lives are made and lost in the seven days between April 24 and May 1. In the world of brain cancer, a week could mean the difference between sending a text with a typo or two and forgetting how to use a spoon. A week is nothing at Duke, far removed from the reality of an experimental treatment seemingly backfiring with stunning speed, but, here, in a home, within a family that looked to Matt to always have the answer, it can feel like a lifetime crawling away.

So, what do you do to fill the endless hours between April 24 and May 1? You Google. You re-read every article printed about Glioblastoma, in general, and the polio virus vaccine as a cure, in particular. Then you read them again. You obsess over timelines, statistics, and facts, and find ways to distinguish your case from all the others. You get dressed and do laundry and buy whatever you forgot to buy at the grocery store the first time you went. You re-watch the 60 Minutes special that featured the first patient who ever had polio infused into their brain and re-read the transcripts from the follow up segment, searching for some clue that you missed the first time around that could explain everything. You go to meetings at your kids’ school and plan events while your mind churns over the facts you read, scrambling the details so thoroughly you need to re-read the articles when you get home.

You take over reading the bedtime stories. You hug your kids tight when you tuck them in. You live on edge.

You breathe when you can. You hold onto hope when you can’t.

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