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2018-10-18 13:16:49 UTC 2018-10-18 13:16 UTC

josh:  I got my staples removed yesterday! I still have to wait a few more hours before it's OK for me to start acting normally with showers / hair washing (provided I use baby shampoo) - can't wait for that, and I'm thinking that tonight will be my first night of good sleep. Can't wait for that either!

Jane and I met with my new neuro oncologist yesterday, and I saw the initial pathology report for the first time (even though it's a couple of weeks old now - I think they didn't publish it to me because they're still working on things).

The report confirms that it's Glioblastoma Multiforme IDH-wildtype (this is WHO grade 4), but they're still drilling down on closer analysis, including genetic info. And I signed up for even more of that yesterday.

They went through the MRI images that they got before and after the surgery - and showed me directly how I was getting some necrosis before they cut out the tumor - yuck. Crazy how quick it moves -- just a couple months ago everyone was wondering whether there was much wrong with me at all.

I'm on the young side of people who get this stuff -- that could be a good thing, ultimately.

My recovery from the surgery is continuing at an unpredictably awesome rate. I am pretty much up to full function, although I get tired quickly, and have short term memory (especially relating to the weeks before the surgery) and noun-word issues, but that's happening less and less. I'm planning to go back to work on Monday.

The next standard step is radiation and chemo therapy. I'm nervous about the radiation - I'm anxious that it may impact my work performance, but I think that's a tough prediction to make. Most people experiencing this sort of treatment (and thankfully that's not a huge group of people) are older than me, and had already retired or made a sensible decision to stop working when they started treatment. Wish me luck :)

There were fewer clinical trials available for people in my position (i.e., not to recurrence yet) than we had guessed there would be. The main one that's accessible at my hospital relates to immune system modification/enhancement, and I'm likely to sign up for that.

I asked for an extra week before starting with these things so that I can do some additional research about what else might be available (and what the impact of rejecting radiation would be - although I think that may not really be an option), and I got it. Jane has been very busy researching for weeks (months, really), but I have been taking it easy. My honeymoon is now over :) so I will hit the books for the rest of this week, and then hopefully be ready to roll next week after I start work.

Love you all!!

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