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2018-11-8 23:52:19 UTC 2018-11-08 23:52 UTC

josh:  Jane and I met with my neuro oncologist on Wednesday. We got some more information about the cancer - it's testing out as glioblastoma multiforme, IDH wildtype, MGMT-unmethylated. This makes it tougher to treat, because it's more resistant to the standard of care than variants like "mutated" and "methylated". That wasn't good news, but the doctor was very encouraging about looking at the overall situation more generally. That is to say, even though the cancer itself is turning out with the more troubling details, my story with it so far has a lot of positive aspects: the relatively short amount of time I spent before diagnosis, the smashingly successful surgery, the fact that I'm still functional, etc. -- all good things that could be pointing at a longer survival time.

I started the radiation and chemo therapy at the beginning of the week. Neither is nearly as troublesome as I had feared. I'm getting the radiation done in the late afternoon and taking the chemo pills later in the evening, so that by the next morning, I'm in pretty good shape and can go to work. I feel a little loopy after the radiation, but that seems to be getting better instead of worse day by day.

Here's a picture of me in the "mask" they made for me that makes it so that I can't move during radiation (important!):



I'm pretty sure that plus sign on the piece of white tape is where the zap is hitting. I'm losing hair in that area, but still have some of it.

Also, I'm in the clinical trial! Seemed like I was close to not qualifying a few times, so that's a relief. This trial is at an early stage, so they're not using placebos. I'll try and do another post with more information about it -- it involves an infusion of the drug they're testing once every two weeks, along with some blood tests, etc. I had the first infusion on Monday (along with the first radiation and chemo - heavy day :) ). I didn't have a negative reaction to the tested drug - more good news.

It's a little challenging to keep up with all the appointments while watching diet and trying to get back into exercise (slowly working back into that now that the initial surgery recovery period has passed), but totally doable. Jane's still having to do the heavy lifting for what the two of us split up more evenly before. Hopefully that changes before too long.

And once again - thanks everybody!!!

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