josh: greetings! I'm running out of quick ways to start a blog post, I might need some training.
I got a little news on my treatment plan. My radiation oncologist called to say that the tumor regions were maybe too close to proceed with focal radiation around the new tumor, but they will be able to make a better call on that in a week or two. She talked about other possible approaches, but I won't know where it goes until there has been some more time and discussion among the doctors. I'll post then.
In the meantime, we started with a family support group at the hospital that will meet weekly, and I think we have a lot we can learn from that process. I had just never really thought about the best way to handle a cancer thing going on in the family. It's (sadly) far from uncommon, of course, so we will pay attention in the meetings.
The family aspect is yet another reason that focusing on today -- the time that is *now* and getting the most out of it is crazy important.
A few days ago hanging out with an old friend, I played a song I had worked on with Chris Lively. When sitting in the class, I remembered the song again. Chris wrote this one quickly. The production is pretty simple and the song is beautiful. That incredible steel guitar player is back for this one.
If you want to hear my contribution, you really need to wear good headphones or use good speakers. I was all about the mix and the spacial aspects of the song, but most of that gets eaten alive by a cellphone speaker or earbuds. That said, my work is *not* required to enjoy the song.
Like the other songs I've talked about working on, my thoughts were clinical, and I made no effort to think of the song in a personal context. At the family group, context filled in, and I could hear Chris singing about appreciating and making the most out of the time we have with the people we love -- it was not promised. Makes sense to me now! Have a listen:
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.
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.
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.
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.