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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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US voting day! 2018-11-06 13:45 UTC
I was thinking I would post about radiation and chemo therapy, but it's voting day in the US, and that's much more important. I thought about how I could stress the importance of showing up to vote, but there's no way I can say it better than Seth Godin did today on his blog. Here's part of what he said:

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We're being played, manipulated and pushed around. It's important to not fall for it.

Here's the simple math:

If you're tempted to not vote because of the vitriol or the imperfect nature of the choices, then you're supporting a downward cycle, in which the candidate who best suppresses voter turnout of the opponent's backer wins.

On the other hand, if you always vote for the least-bad option, then a forward cycle will kick in, in which candidates (and their consultants and backers, who are also causing this problem) will realize that always being a little less bad than the other guy is a winning strategy. Which leads to a virtuous cycle in the right direction.

Don't get tricked. Show up.

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here's a link to his full post. I'll go back to cancer posts starting tomorrow :)

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2018-10-31 23:35:02 UTC 2018-10-31 23:35 UTC

josh:  Happy Halloween! OK - maybe I'm waiting a little too long between updates, but it's true that not too much has happened since my last one (again -- good!). I am back at work, and the timing is good for that. We will likely get progressively busier as we approach the end of the year, which means this is an ideal time for me to get back in.

I had a brief scare due to a false positive test for tuberculosis (which meant I was definitely working from home for a couple days :) ), and it was a big relief to find out that I didn't actually have it. Even though I didn't have the awful symptoms, I couldn't get completely comfortable until we got the results of the second test and chest x-ray -- this because taking steroids and recovering from surgery has the effect of reducing the immune system. Plus, there was a news report of a TB infection in my city not too far from my house last week (hope that works out OK for the person who has it - there's someone else who could use some thoughts and prayers, to be sure). That's all behind me now. And I can still participate in the clinical trial I signed up for -- likely I would not have been allowed to do that if I actually had TB.

I will be starting radiation and chemo therapy, as well as the trial, on Monday. I was a little anxious about these (particularly the radiation) some time ago, but I've become much more comfortable as I read more about them. No one can be sure what to expect from the trial, but they let me know that I can quit at any time, so no worries there either.

Once again - thanks for all your thoughts, prayers, and support!!!!

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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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2018-10-11 12:19:38 UTC 2018-10-11 12:19 UTC

josh:  Coming along very well - starting to get back full brain function. Still taking the powerful steroids and other required pills, which are still amping me out quite a bit, but I can't complain. Yesterday was a great day, and I'm looking forward to today - I even got a couple hours of good sleep last night! (the healing from the surgery and the staples make it tough to just crash out - that will get better of course). I'm having some minor vision issues - I think mainly from lack of sleep and the healing. Hoping I'll get good vision back soon.

MD Anderson is still working on the analysis. I had no idea how complicated it would be to get to a final diagnosis, but it makes sense as I'm learning more. I'll be sure to update here when they finish, and then they'll have some ideas about what should happen next. I may be able to get involved with some clinical trials that could result in long term benefits (including dealing with recurrence in effective ways, and, who knows, an actual long term remission or even cure could be in the works at some point!) - they need to complete their diagnosis before thinking about which of those might be available of course.

Probably I will keep posting less frequently with these updates, because they're getting less interesting as time goes on (and that's good!). I will make a point to post real news, when I get it.

Thanks again everyone!!

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