It’s not heavy so much as it’s awkward. Here, get this end.

Bro, what is this?

It’s my anticipatory grief. I keep moving it from room to room to find a place for it, but then it’s in the way of something else. I’ll have to do something with it eventually.

I guess the bad news is that even while accepting it, you never stop being sad about the end, and you never get a perfect plan to deal with the uncertainty of when it starts.

The beginning of the end, I mean.

I’m having a hard time with advice-giving these days, fam. Even at eight years, or despite it, it’s still scan-to-scan. I’m not showing up like I used to. I had a run there where I delivered at a high level, but I get tired sooner now.

The past couple of months have really been a slog. Whitney knows it. She sees it in my eyes. She watches me take a little more time pulling myself out of bed. I notice it in my approach to treatment. I’m not complacent, but I am content. I’m in no real hurry to out-think the disease. The disease is me, after all, just some bad boy cells who hijacked my biology. There’s a sense I have that me and this disease got all wrapped up, and what we create, we’re responsible for together. I don’t know. I’m going to take a beat and figure out where I’m at.

The whole thing would be fascinating if it weren’t so damn devastating, and I think it’s the people who I get along with the best who get what that means. Fascinating devastation. How else do people just come and go in your life, diagnosis and death, and you stay around, if not for being gripped by the disease? Patients and physicians are both gripped by this disease, even if in very different ways. I suppose that’s why I often feel closer to doctors and researchers, underpaid nonprofit staff, and overworked government scientists, closer to these characters than sometimes my support network.

We have an obsession.

At some point, the disease is taking both of our lives. Mine is buried 6 feet deep, and yours will be under another clinic shift when the family moves out.

We’re well beyond the halfway mark for this year of chemo, and Whitney asked me, “What’s the plan after this?”

I’m not ready to figure one out.

“I want to hear you and respect that this is the information you need, but I’m not sure I want to be a part of that conversation right now. Maybe you and the doc have that conversation, and I’ll step out.”

Sometimes, we want to treat something someone said like a manifesto when it’s only a blog post.

Right now, I’m not up for thinking about the next 12 months until I make it through these. It’s tough to say achievement unlocked when my day-to-day life is fatigued, and I have another few cycles to go.

Rather than a call for support, this post declares that we can call a thing what it is and don’t have to be nonstop psyched. Anyone who wants you to be strong all the time has never tried to carry this thing.

It’s not heavy so much as it’s awkward.

This blog post was published by Glioblastology on September 24, 2024. It is republished with permission.