April 13, 2017: Words and numbers

I wish there was a screen shot of a text message or an email to describe the conversation Matt and I had on the night of April 13, 2017. There isn’t. Our conversation over text revolved, again, around those blinds for the bathroom. (I know, how much can one couple discuss a bathroom window?!) There is no photographic evidence either of what we talked about. (More pictures related to the blinds!) So, that leaves me with my own imperfect memory of a day and a night and a conversation that revealed the crumbling foundation of our quest for the cure.

Matt was scheduled to fly to Duke, alone, for another check-in with the nurse and more blood work the next day. It should have been an easy appointment. Only two weeks had passed since the polio infusion and nobody expected to see anything (swelling or results or otherwise) yet. This appointment was meant to check boxes for the protocol.

But…we did see something.

What we saw was subtle, because things with the brain are always subtle. Mixing up two words here. Saying the wrong number there. Little things. All mistakes I probably make all day long. But here’s how the thought process works when your husband has a brain tumor and an experimental virus floating around in his head: Is he mixing up more words than than usual? Am I being too critical? Did he always make so many mistakes in typing a text? Maybe I should stop overanalyzing?

Ultimately, it was Matt who confirmed there was something to notice. He came home after work and said something had happened at a meeting. He’d been talking and couldn’t get his mouth to say what was in his mind; he couldn’t recognize the numbers on the page. It had been a fleeting episode, but it had shaken him up.

We stood around the kitchen island where most of our important conversations seemed to happen and he told me what happened. With a straight face and straightforward language. He didn’t play it down. He didn’t crack a joke. He didn’t try and soften the truth. That’s how I know it had scared him.

I can’t imagine how he must have felt during that episode or afterward having to come home and tell me. His brain had betrayed him in a way he could recognize. This was more than a shift in his personality. But, luckily, he was heading to Duke tomorrow and we would get some answers. Right?

A typo or something more? 

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