Hope, Fights, and Tiny Moments of Light

It’s been a week since I’ve posted. The writing bug just hasn’t visited me.

Last week was a rollercoaster — some good moments, some hard ones.

Mike has completed three full weeks of treatment. He’s starting to lose a little hair, but it’s not very noticeable as long as he keeps it cut close. His bloodwork is still normal. He’s tolerating treatment surprisingly well — his biggest complaints are fatigue and the ban on beer.

Our daily walks help lift the fog a bit, even if just for a while. But by late afternoon, he’s usually running on empty.

Still, we look for little rays of sunshine throughout the day — tiny moments of joy and peace to remind us: we’re still here. We’re still fighting. And even in the thick of this, we deserve to laugh, to rest, and to feel alive.

We’re also realists. This diagnosis is big and hairy and complicated. I’ve been fighting to get answers, to push past vague responses and generic care plans. I’ve had to bully doctors just to get referrals. I’m not settling for “this is guaranteed to recur, and standard of care is all we’ve got.”

No.

If I can find their email address, I’ve probably contacted them. Neuro-oncologists at Duke, MUSC, researchers connected to studies, and the National Brain Tumor Society — all of them. Because someone, somewhere, knows more. And we’re not going down without a damn fight.

This week was especially rough. I’ve been begging our local care team for help — just to care, honestly. After constant back-and-forth, I finally got the complete pathology report with the biomarker and chromosomal microarray data. Not because it was offered, but because I called the pathologist myself.

This is the kind of shit you deal with when you have a rare disease.

There are tons of resources for breast, colon, and lung cancers — as there should be. But for rare cancers? For brain tumors like Mike’s? There’s almost nothing. So I’ve had to become an overnight expert on astrocytoma, glioblastoma, TERT promoter mutations, chromosome deletions, EGFR gains — a full crash course in medical chaos — just because no one else wants to spend ten minutes on a Google search.

But… there is hope.

In the middle of all the calls, all the reading, all the rage-fueled digging, I’ve found that yes — Mike has an extremely rare and aggressive brain cancer. But it also potentially appears to be a rare subtype with better long-term survival outcomes than traditional GBM. And that matters. A lot.

So I’m going to keep fighting. I’m going to keep pushing for the absolute best care, the best options, the best shot at long-term survival. Even if the doctors we’ve encountered so far are okay with mediocrity or giving up.

I’m not.

And I know you aren’t either.