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2019-03-21 10:54:28 UTC 2019-03-21 10:54 UTC

jane:  We are at M.D. Anderson getting ready for surgery.

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2019-03-21 09:59:07 UTC 2019-03-21 09:59 UTC

josh:  good morning! This is early for me - we're about to head to the hospital. I didn't get a chance to run through the process of posting here with Jane, but I think she remembers from before.

If she's not posting, it could be because something went wrong with my post-y code in the last six months - mostly likely it would be that she doesn't have the super long password I set up because of maybe a software update or something on her computer got rid of the cookie or something. What I mean to say is that a lack of posts doesn't mean something bad is happening at the hospital. Also, we're both pretty tired right now - if I was her, I'd probably be sleeping for quite a while today :)

"Preop" went well yesterday, and I'm feeling pretty good about the surgery. Wish me luck, and I'll talk to you soon!

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2019-03-20 18:26:33 UTC 2019-03-20 18:26 UTC

josh:  hello everyone!

Today I have "pre-op" things going on - I got some "fiducials" sort of glued to different places on my head - this also happened with my last surgery in October. I got a MRI (among other tests) today with the fiducials in place. The images from the MRI will show (I think) the fiducials as well as the brain, so they'll help the surgeon. I seem to have temporarily lost my ability to take an acceptable selfie.



I got a short look at a small icon sized picture from the MRI on my way out - not enough to see much, but it did appear to me that the thing that gets removed hasn't changed in the last week -- I'm taking that as a win :)

Still a few more preparatory things to do, then surgery tomorrow.

Hopefully Jane can make updates to this blog topic - I haven't tested that for a while.

Thanks again!!! for all the kind thoughts and prayers and support through this

The weather in Houston is very nice, and I'm having a great day - hope you are too!

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happy st. patrick's day 2019! 2019-03-17 20:33 UTC
Happy St. Patrick's Day! I don't do a lot of holiday-ish posts here, and probably won't make a habit of it, but I've been thinking about Ireland a bunch recently. I'm not a lot Irish - I think like 25%. My Dad's mother was half northern/protestant ("Verner") and half catholic ("O'Neill"). My great grandmother the O'Neill was born in South Carolina, raised catholic, but switched to episcopalian at some point. Anyway, to celebrate, here's a picture of the "Red Hand of O'Neill" that I stole from wikipedia:

(this is more frequently called the "Red Hand of Ulster" and its origin is controversial - here in Texas, I think I can comfortably and safely sit on the O'Neill side of the debate :) )
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2019-03-15 23:38:44 UTC 2019-03-15 23:38 UTC

josh:  Been a while since I posted, so I'll catch up. I have been doing the 5 day on / 23 day off chemo plan, and I'm still in the immunotherapy trial that has an infusion every 2 weeks.

I started the TIRR rehab program to help get my language function back up. I have still been having some problems with noun finding ("anomia") and memory -- these were manageable and didn't affect my ability to work, but I have been looking forward to getting all the way back to normal as soon as I can. The TIRR program is very good - I get exhausted after a session there and I think I could see some improvement right away.

Unfortunately, I had a spooky MRI last week - there's a new thing that could be a tumor. It's not close to the tumor that got cut out last October. Here's a picture from the MRI (the thing was not there at all as recently as January 8, when I got my last MRI before this one):



I'm learning more and more about the brain - this thing actually starts in the middle between the left and right hemispheres, and then pushes to the left parietal lobe. The October tumor was in the left temporal lobe. It's worth noting that when glioblastoma comes back, it usually does so really close to the location of the last tumor. Not what's going on here.

So it's not clear what this is - it could be a new tumor (which would be "progression" of the glioblastoma, which would suck, of course), or it could be inflammation or something, perhaps caused by one of my treatments. I don't have any symptoms from it at all. If it started causing problems, they would be with my right leg - probably I would lose the feeling and maybe the motor control of it depending on how the thing got bigger.

I'm going to go back for surgery to remove this next week. We're thinking it will be less intense than the October surgery -- I'll be able to be asleep for the whole thing, for instance. They'll do a biopsy on what they take out of course, and then we'll know for sure what it is.

As you might guess, we've put things like chemo and TIRR on hold for now, but I will be getting an immunotherapy infusion the day before the surgery, which is cool.

I'll post updates, and/or, as before, Jane can post updates about how things are going.

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