October 20, 2017: Wake Up Call

I remember leaving the hospital on June 10, 2016—walking to the car, the traffic-filled drive home, the uncertain moments watching Matt hold his head in pain. I remember waiting to fly home on March 31, 2017, wondering what was happening in Matt’s head after the infusion of an experimental virus that was supposed to be the miracle we needed to cure him of a disease that had recurred much sooner than we’d expected. I remember flying home from Duke after the Gamma Knife procedure, watching G and H reunite with their dad after his first terrifying hospital stay, and chasing after Matt as he rushed out of the hospital almost before the discharge papers were signed after his first seizure.

But I don’t remember leaving Kessler. I don’t remember the drive home or the way, according to text message, Matt went straight up the stairs to nap in our bed. I don’t remember how G and H reacted when they saw Matt finally home.

It seems like something I should remember. I should remember those triumphant moments when Matt returned.  But I don’t.

Instead, what I remember are the moments that made my stomach drop, those moments that made me realize the full impact of that failed cognition test, which hadn’t seemed so bad in Kessler.

Yesterday, I introduced the idea that Matt’s thinking was still impacted by the tumor and the trauma his brain had been through. I wrote that he believed if he was struggling, then everyone was struggling. The almost necessary implication is that he couldn’t see that his thinking was distorted. And who could blame him? It’s nearly impossible to step back from your own mind.

Two incidents occurred that forced Matt (and me) to confront the fact that Matt was not himself and we could not pretend that he was, as much as we wanted to. The first incident was relatively minor, more of an inconvenience than an incident. Matt wanted to order sushi for dinner. I wrote down the order and he called it in. I asked whether he gave a credit card, as we had no cash in the house, and he told me he did. I believed him. Turns out, he did not give a credit card. We scrounged up the cash using coins and dollar bills from G’s piggy bank and the entire thing could have been forgotten, written off as a mistake, if not for incident two.

The second incident was more than an inconvenience and probably served as a wakeup call for both of us—certainly for me. Matt wired money to the wrong account. We called the bank as soon as he realized his mistake, but the damage had been done and couldn’t be undone until after the weekend, if at all.

We were both frustrated. Matt, because he didn’t want to believe the cognition test at Kessler had been at all accurate. (Who cared if he couldn’t remember a fake grocery list or put a series of pictures in order?) He wanted to believe that he was still capable of doing what he’d always been able to do. And me, because I should have intervened. I should have known. I shouldn’t have let myself be lulled into believing that a discharge from inpatient Kessler was anything more than a superficial step forward in our ultimate battle.

Too often over the next few weeks, I’d find myself frustrated with myself, saying I should have known. Too often I let myself believe in Matt because he was Matt. I’m not sure what that says about me—maybe there’s a lesson in there about believing in yourself—but I know what it says about the man I married and the legacy that G and H inherited.

The cruelty of brain cancer is how easily the bad moments overshadow the good.

The undeniable truth is that even brain cancer couldn’t get me to stop believing in Matt.

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