May 31, 2017: Recurring topics

Yesterday I said that collecting all the materials Columbia needed was a two-day process. May 31, 2017 was day two.

Now that Columbia had some of Matt’s medical records, we were permitted to schedule an appointment for that initial consultation. And by that, I mean they told us the one day and time they had available—12:30 p.m. on Friday, June 2nd—and we could take it or leave it. That sounds harsh, but it’s the reality of this world we’d entered. The doctors were already over scheduled. Often we made an appointment knowing that the doctor was double booked for that time. What choice did we have but to plan to wait for a doctor who somehow had to be in three places at once?

We confirmed the appointment for Friday, June 2nd and I sent an email to G’s school letting them know I could no longer volunteer for an event on that day. I was upset about the possibility that G might look around and not see her mother, but I’d waged this internal tug of war with myself on May 1st—when I didn’t go to the appointment at Duke—and knew how the battle would end. There’d be guilt no matter the choice. And I needed to be with Matt.

Matt’s response to my conflict: “I can go by myself too altho I like hanging with you for stuff like this.”

The rest of the day I spent driving back and forth to Hackensack and the UPS store to make sure the CDs arrived at Columbia in time to be reviewed by the doctor. Because I was in the car, Matt took over the final task of getting the slides to Columbia. Ninety minutes, three phone calls, and one broken fax machine later he managed to get approval to have the slides overnighted.

A lot of topics I’ve brought up in previous posts return in this one. The feeling of being torn between the kids’ needs and Matt. The idea that we had no control over the schedule. And the notion that it often felt like the people and institutions we counted on weren’t always on our side.

Another topic creeps into this post. One that I’ve written about often and still feel as if I haven’t captured correctly with words: the way GBM stripped Matt of his humor and his charm, his smile and his spirit.

The text Matt sent to me is not particularly romantic. It’s not particularly memorable. But I’m grateful to have it in writing. Because about six months after he sent it, it often felt like the opposite was true. That Matt did not want me there. That I could say or do nothing right. That I made his day worse instead of better.

It’s excruciatingly difficult to admit that. And it’s nearly impossible not to admit that without self-doubt crowding my thoughts. Maybe it wasn’t just the tumor. I wasn’t perfect: I lost patience, I lost strength, I even lost hope. Maybe he was just angry about it.

Logically, I knew, and know, that the tumor had stolen so much of the real Matt and the real Matt wasn’t the one snapping at me. But logic doesn’t always prevail. Even in post-hope. (Especially in post-hope?) Sometimes the cuts his words left eclipse any kind of logic and all I feel is the sting and the guilt and the doubt.

But then, our story will lead me to a day and a text like the one he sent on May 31, 2017, and I’ll remember the real Matt, the one that left notes for me to find when he went away for work, the one that always wanted to hear a funny story about the kids, the one that never expected perfection.

Telling our story lets me remember the real Matt, the one that liked “to hang with me for stuff like this.” And some of that ache from the worst days subsides.

It seems appropriate that this topic appears today, on the last day of May, a month designated to Brain Cancer Awareness. Because when I start doubting our story, and wondering why I ever believed a stranger might care enough to read and follow along, I think of how much in January I needed to hear I wasn’t the only caregiver feeling the sting of words and drowning in self-doubt.

So my hope on this last day of May is that in telling our story, I’ll bring a grain of awareness, and maybe, hopefully, another caregiver will read this and remember their own good days and some of their ache will subside, too.



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