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.
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.
josh: Hey everyone - things are getting better and better. I still have a way to go, but I can tell my left temporal lobe is starting to come out of the woods, getting briefly back on line from time to time as I get rest and eat enough good food (and keep taking the darn steroids, of course). I've even had short periods of time when it was completely functional - not just right now, though. Certainly I'll have to be careful about the other non-brain healing (skull, etc.) that has to take place without a hitch, and will likely need some more time, but that should be completely doable.
I have been so happy most of the time, and constantly showered with support from all the people I know. Of course there have been moments that were more challenging, but they have been completely manageable.
I have been listening to music. I remembered a nice song that my good friend Chris Lively wrote last year. He recorded it at my music studio (with an amazing drummer in the studio as well, and a fantastic player who sent us the gorgeous pedal guitar part). I worked on this song and the rest of his album as the recording engineer and mixer. Previously I was somewhat clinical in my evaluation because of my production duties. This time I simply played it when I was feeling down, and I can't tell you how uplifting it was. Have a listen:
Chris Lively - Distance - The River Song:
(if you like it, you should consider listening to the rest of his latest album "Distance" and his earlier work, which you can find at his website and some other places. I played some of these songs for my sister when she came down to visit. She asked me why he wasn't famous, and I didn't have a good answer)
josh: Good morning (in Texas it is, anyway). I went back and read my previous posts, and I can see the trouble I'm having from using the weaker side of my brain to communicate -- I fixed some of the more embarrassing problems, but left most of it in place.
I got my first reduction in steroids today, but still have a long way to go. The strong side of my language processor brain is still not working, but I suspect it will be back as it heals and the steroid reduces further. In the mean time, I'm going to post less, and then when I'm strong again with language processing - hopefully soon - I'll post more - it will be better that way. In the meantime I will play music locally and try to relax, being grateful for how well things are doing for me compared to how they could be.
Once again - THANKS for your support and caring. I'm getting better!. I hope to have a small amount of time to be fully healed and to celebrate our victory in the battle before I have to turn my attention to the war.
Even though currently the cancer is not considered curable, there is a lot of promising research going on, and I want in on it (and I don't want a placebo! - haha). I'm staying hopeful and positive, and I'm not letting go of the possibility that I could live for a long time, and maybe even be cured.
I also plan on getting back to work as soon as I can - hopefully within weeks. I am lucky to have an amazing job with amazing people for an amazing company (and I don't talk about it all here - haha). - I can't wait to get back in the game once I'm healed, and I will work hard to keep creating value for the company as long as I can - hopefully a long time.
josh: I was kind of on the fence about whether to publish this picture, but I think I should:
As I think mentioned, I had an "awake craniotomy". I was out when they cut skin and bone and the part that separates the skull from the brain, but they brought back to wake for the brain cutting, and I talked to them about things that we had set up earlier which would be important - language stuff.
I'm counting almost 90 staples in that picture, but the skull cut was quite a bit smaller. I had a *top notch* medical team and an *incredibly talented* surgeon for this process. I can't say that I recommend it - haha - but it was much less grueling than you might imagine.
Also, the cancer was mercilessly driving me insane, and now it has been hit back hard, and I'm recovering very quickly.
Before the surgery, I have to admit it was scary. I had really careful and supportive help from my new and old friends (including very close people I had not talked to for decades who somehow knew me still better than I could have imagined), and they kept me hopeful and operating until I got in for surgery. I will never be able to fully describe the pre-surgery deteriation experience, and frankly it's better that way. But my friends helped me get much closer to talking about it than I ever thought I could be.
I have a couple of weeks to go through recovery with strong steroids, but I'm hopeful that I can be back in action pretty soon, with the stronger side of my language processor brain back up at full speed (that's where I was taking the big hit from the tumor which is now out and spending quality time with researchers).
This recovery is not fun, but it's not scary like the crazy that the tumor was bringing.
I have so much to be grateful for, and I'm looking forward to much more in the next few weeks. If you want more specific information about MD Anderson and my surgeon, I can tell you more privately -- definitely the "A Team" for this, and I was lucky enough to just walk into it (and out of it!). SO Grateful! - and thanks for your constant thoughts and prayers. As I mentioned before - totally working!