May 6: Bungalow 8

When Matt started Avastin, our entire schedule of MRIs and appointments changed. Instead of going for a MRI in June, as planned and required by the trial protocol, we scheduled a MRI for the beginning of July. In the meantime, he was supposed to get two more Avastin infusions, three weeks apart, for a total of three infusions before the next MRI.

Sounds easy enough. (Do I even need to say spoiler alert here? Of course, it wasn’t easy.)

But on May 6, 2017, it seemed easy enough, and we let ourselves take a break. From cancer and Avastin and doctors. A good friend of ours was throwing a fortieth birthday party and we were ready to go out, be out, and not think about how just a week earlier we wouldn’t have made it to this party. When someone came up to me and commented on how good Matt seemed, I didn’t spiral into self-doubt. I agreed and probably changed the subject.

We left the party early. Matt wasn’t up for a late night and who could blame him?

I’ve said this before, and it’ll be a recurring theme over the next nine months so I’ll probably repeat myself again, but it’s important to truly understand. Brain cancer distorts a patient’s personality. It’s this distortion that sets brain cancer apart from other cancers. And it’s impossible to tell if the cause is the tumor, the surgery, the medication, or just the stark truth of the diagnosis.

Matt and I met at a club. Our early years were defined by late nights, gathering at Matt’s apartment, going out, being out. More than half the reason I agreed to a second date with Matt was his promise to get me into Bungalow 8 (admitting this makes me feel old…and possibly a little shallow* but it’s relevant because it speaks to something essential about the Matt I fell in love with). Kids and mortgages inevitably changed the shape of those kinds of nights, but Matt never stopped loving going out and being out. Until he did. I don’t know when that faded, probably sometime in those rocky months before diagnosis when I worried his personality changes were due to marriage issues, and it never quite came back the same way, despite the surgeries and the radiations and the chemos.

If yesterday’s post was about what brain cancer couldn’t take from Matt, today’s is about what was stolen first, that love of being out and going out. That was also the part of Matt I fought hardest to get back. Maybe because it was the part of him I first met, the part that formed the foundation of our story.

So I couldn’t blame Matt for not wanting to stay out late on May 6, 2017, but it could tear me up to see him just that much more muted and tired and not exactly sure what to do next.

*For whatever it’s worth, I’ve still never been to Bungalow 8.

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