6/20/2025

6/20/2025

So, I started Optune yesterday. I just googled it for pictures, since I’d been telling other people to do that but I hadn’t done it myself, and the results are pretty close to accurate. Picture the queen Borg from Star Trek, and you’ll be on the right track/trek. (See what I did there?) Those of you who saw my latest FB profile picture saw the shaved head, that was step one. Step two was to clean my mostly bald head with some alcohol (not that kind), and then apply 4 of these “arrays” to my head. They’re not very big or heavy, which is apparently a recent development, and they have wires coming out of them that plug into a box. I mentioned black/white in my last post, and that’s still accurate, it’s just a lot easier to get it right since my partner will be the one doing it. Trying to line everything up myself would be an absolute nightmare. So, yet another reason I’m thankful for all of her help through this roller coaster ride that is my life now.

My neurologist that I saw last week wasn’t familiar with the product, since it’s fairly new I guess. He still wants me to do a multi-day inpatient procedure where they do the EEG lead thing (lots of wires) and then try to trigger seizures through various methods (sleep deprivation, good luck with that one, flashing lights, okay, and hyperventilation, whatever). I’ll have to tell the Optune people about the 3 days off or whatever it ends up being, but I’ve been told that’s fine.

In the meantime, I have a bunch of things stuck to my head, a bunch of wires wrapped up and hanging off of my head, a bunch of batteries I have to change every 3-4 hours, and my little uninvited guest isn’t allowed to grow, or something, due to some electrical pulses or something. The tech is way beyond me, for sure. On average it’s supposed to extend my ticking clock by 4 months, which sounds great, one day in. 4 months from now, I might have a different opinion, I already think this thing is a pain, but not actually painful, it’s just inconvenient. I guess we’ll see.

My trip to Germany has been postponed/canceled due to all of the seizures, so the German family is coming here instead. We’re still figuring out what exactly the plan is, but it should be a fun week or two.

And my typing has gotten a little worse. Thankfully autocorrect mostly covers for me, and the fact that I already fix my own typos and always have, but it’s pissing me off. And I know there’s nothing I can do about it but work through it. And I am, for now.

To be continued.