josh: Having a great weekend. I haven't come up with a strategy on the missing hair problem, so I'm walking around with the bizarre partial bowl cut look. I get some strange looks, but no one has laughed (at least not loud enough for me to hear it :) )
I'm pretty much over the cold - yay! Things really got better, even though I'm going into the final two weeks of radiation, which they warned me would cause the most fatigue -- followed by continued fatigue for the first two weeks after the radiation protocol.
I've had more encouraging meetings with MD Anderson doctors. One of them told me I should be 'journaling' -- there are multiple ways to interpret that, but I think the main point was a regularly repeated expression and maybe documentation of the way I'm feeling / thinking as time goes past. I'm terrible at that. If I do much documentation, it likely won't be here (i.e., public), but I thought for my update this Saturday I'd take a shot at it once.
The other night I woke up in the wee hours and could not stop remembering a particular song that I worked on with my friend Chris Lively (mentioned him a few posts back) in late 2014 on his album before the latest one. Other than the music itself playing in my head, I remembered some unusual behavior from me during the production process and decided that might be a good thing to journal about. The song is absolutely beautiful (writing and vocal/instrumental performance - all of which Chris did himself, btw), and I think Chris was intending for it to be uplifting and positive, but I had other ideas.
Like every good artist, Chris does not disclose his own interpretations of his songs (to the classic extreme which makes you wonder if he even has them), but in this case I was up front with him about my own interpretation: a story about fighting a particular battle and *losing*. I was certain that's not what he was thinking, but he said it was interesting.
(as an aside, if you see Chris play live -- which I highly recommend -- you'll notice that he plays this song quite differently from what's on the album. I'm not sure why, but one likely reason is that the studio version has a strong set of backup vocal tracks which I imagine are not always creatable in the live performance scenario - there are other possible reasons as well :) )
So, the other night I remembered creating more impact on this song than usual during editing and mixing. Clearly I went too far, and at Chris' request, I wound up rolling back some (but not all) of the things I had done before its inclusion in the album. It was this pre-clean-up version that was going through my head, and I thought it would be nice to make a journal entry about my memory of that version. The following day I found the old music project file and opened it, intending to click 'undo' a few times to get the mix back to where it was before the final. I quickly realized that my system had changed so much over the past few years that the approach could not be so simple.
So, I spent a some time to rebuild the version I was remembering. In the process, I saw that my memory of the editing/mixing process was inaccurate. I thought I simply did some edit-polishing and finished up the high level changes with a cursory knod to my interpretation, but I could see that's not what happened. Rather, I used quite a bit of focus to create things like the unnerving pitch wobbles and the overpowering of the vocal tracks by the guitar tracks at the end, but simply don't remember doing it.
This was a full three and a half years before my first symptom caused by glioblastoma, but I could not help but wonder like, 'who made these decisions?' (not unlike Kermit's "Who hired this crew?"). There was no one but me involved in the process, btw.
As part of today's journaling, I decided to post the re-created song -- this is a little different from what you'll hear on the album, of course, because I'm trying to show where I was at with it before presenting it to Chris. Trigger Warning: this isn't necessary going to sound uplifting or positive :)
Chris Lively - Feather - Comfortable Mind (modified):
(I feel the obligatory but perhaps futile music worker's push to urge everyone to use a good set of speakers or headphones to hear this, or you'll likely miss what I was attempting to talk about. Then again, maybe phones and earbuds are better :) )
josh: quick update - hope you all have had a great weekend (and holiday weekend, if that applied). I'm close to halfway through my radiation protocol, and I'm finally losing some hair -- just about an inch of hair over my left ear, where they're focusing the most to get to the place where the tumor was. I'm not sure exactly what I'll do - it looks like the stupidest '80s dance music haircut you could imagine (and I know some of you can imagine stupider haircuts than others -- it's you I'm talking to). That is - matching the cut on the right side is not a good choice :)
I was doing great physically until I managed to catch a cold almost a week ago - that's a different experience when you're in chemo and radio therapy, which are affecting your immune system in odd ways. I think I'm almost over it -- I better be by tomorrow (going back to work). Overall, it wasn't as bad as I feared.
Hope you all are having a great day or night as the case may be!
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.
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!!!!
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.