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2019-04-4 00:46:14 UTC 2019-04-04 00:46 UTC

josh:  hello - I had a nice *long* day at the cancer hospital today and learned/confirmed a few things - here's the update:

First things first - I got the staples out! Here's my new look:




some cancer info:

The new second GBM tumor originated on the "dura", which is sort of a wall between the left and right sides of the brain, and spread into the left parietal lobe. It wasn't just pushing - it was connected and preparing to juice up into full megadeath mode. I think this is what's expected from GBM.

We didn't talk about it, but I heard no reason to think that cancer cells had gone into the right side of the brain -- which so far has not shown any cancer-y stuff. Important for me.

The surgery went very well, like last time, but we have to assume that there are a bunch of cancer cells sitting in the area around where the tumor was (in the dura and the left side of the brain, that is). These cells need to be dealt with.

I was hoping to get more detailed DNA analysis on the cancer cells of the new tumor, but that's not ready yet.

Importantly (to me), the area surrounding the new tumor is completely separate from the area surrounding the first tumor. There have been no changes at this point to that first area. I like to think that the radiation on that first area was effective against the cancer cells which surrounded the first tumor. It has only been a couple of months, so it's probably too early to claim victory, but I could use a win right now :)

Because of this long distance between the two tumor areas (which is highly unusual, it turns out), the area around the new tumor can be hit hard. Normally, a new tumor would be very close to the older one, and the radiation oncologist wouldn't want to barbecue that same area twice with intense radiation -- treatment options would be more limited -- another win!

I'm officially out of the clinical trial -- I guess it didn't work :) -- and cut short on my current on/off chemo plan. Nice little break (which will start in a few days when I finish up the steroids I am taking from the surgery, I suppose).

So - we're sort of rebooting and planning radiation for this new area, together with chemo, which will also have some continued effect on the old area, I suppose. All this winning means I get a new mask!

from the trailer for Radiation Man 2:





I have been meaning to post a picture of this inspiring statue outside the hospital -- the woman stretching up to to the heavens with her compelling yet flippant message about the bird




I'll keep posting updates - thanks again for your thoughts and prayers! I will also try to make some more music posts soon.


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2019-03-29 00:16:21 UTC 2019-03-30 19:43 UTC

josh:  Update Hello! The weather is great in Texas.

I'm feeling very good today - I've been back home and working for a few days now, and the impact of the steriods I'm taking from the second (excellently performed) brain surgery I had a week ago is less annoying that I was expecting.

I have follow up appointments with my doctors next week, and that's normally when they present me with the pathology report(s) that are based on the surgery. This time, though, I got a copy of the pathology report myself in advance. I knew I would not be able to understand all the details, but at a high level I can see what's going on. The new (second) tumor is definitely Glioblastoma Multiforme (ďGBMĒ) like the old one - the report I have doesn't drill down yet to the lower level analysis - the first tumor was IDHx wild-type, MGMT unmethylated, so this one probably is too. And they're not close together.

But let's wait! I'll post a more definitive status next week after I have meet with the doctors. Like last time, they probably will discuss my case in a group about tumor treatment plans, and I'll post about that too.

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2019-03-24 19:11:22 UTC 2019-03-24 19:11 UTC

josh:  I'm back home!!

Here are a few picks -- first is the tape coming off the incision,

The second is the staples (once again, I can't bring myself to count them - some aren't completely visible in the picture) - you can still see some of the scar from the surgery 6 months ago, on the top (alongside the right of the new scar) and left side of my head, but it blows my mind (careful with word choice, josh...) how much it has healed,

And the third my beautiful daughters with me not looking as copacetic as I thought I was:










I'm still mostly at the honeymoon period with the steroids - not completely flipped out yet, but that will happen soon enough.

Love you all - great to be back!!! I'll post more news when I get it - later this week probably. I'm going to take a nap.

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2019-03-24 14:47:11 UTC 2019-03-24 14:47 UTC

josh:  Happy Sunday! Still in ICU but only because no normal room is open. Likely I will get discharged today straight from ICU.

I feel really good, although I'm starting to feel the steroids I have to take because of the surgery. Not my favorite, mainly because they make it impossible to shut up, and when combined with the seizure medication I always have to take, which makes me irritable, not a good combination :). - wish me luck, and hopefully I can improve from last time.

The way I have this blog set up, it's tough to post pictures directly from my phone, which is all I have here. When I get home (today!), I'll get some up.

Once again, much love!

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2019-03-23 15:47:10 UTC 2019-03-23 15:47 UTC

josh:  Good morning! I'm feeling pretty good today and probably will get to go home tomorrow! I'm still in ICU but that's because there are no regular open rooms.


Still waiting on the pathology - probably will see that mid next week.


Once again - thanks!!! for your support. Love you all!

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