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2019-07-7 20:58:34 UTC 2019-07-07 20:58 UTC

josh:  Hope you're having a great weekend - and if you're in the USA and celebrated Independence Day, maybe with a long weekend, hope that was fun.

This is just a check-in - I'm about two weeks into the new radiation therapy plan for the right temporal lobe area. After a few sessions, I noticed that the radiation machine sometimes forms a face -- something like:


(Thinking about something?)

or this:


(Oh... cheer up! Maybe it's the masks - I would freak out too)

A little anthropomorphism I guess, but the first time I noticed it, it had a smile - I swear. I didn't have my camera.

When they're done with my session, the little gaps are all over the place and don't look like a face at all, so these pictures are what it looks like after whoever went before me had a session. Of course, I can only take the picture when I'm not actively getting the treatment. If I do get another smiley face, I'll post -- otherwise, this is that least you'll see of radiation buddy

Love you all!

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2019-06-22 21:51:20 UTC 2019-06-22 21:51 UTC

josh:  Happy Saturday. I'm having a nice relaxing weekend and I hope you are too. I started the fractional radiation treatment on the right temporal lobe for my third GBM tumor area on Thursday, and took my chemotherapy pills on Thursday night.

I get the weekends off from radiation (and by the plan, won't have to take more chemo for two months).

Not seeing the same weird lights as I did with my first fractional treatment on the left temporal lobe -- that's likely because the radiation beams aren't crossing visual nerves the same way they did last time. Also, I don't smell weird smells - I thought that might be caused by radiation on the smell nerves, but the techs told me it was probably ozone, so a real smell, and I think they're right.

Doing great and hoping for the best. This treatment plan will complete in about 6 weeks (5 and half, I guess).

I asked the tech about the proper term to describe the type of radiation treatment I'm getting, and she said it was (photon based) stereotactic.

Changing the subject -- I was recently going through the music files in the computer I use for music recording, and as I expected, there were a bunch of them I had created merely for a quick test or a note-to-self sort of recording so that I wouldn't forget something.

I came across one that's a couple of years old, and clearly was intended to help me remember a chord sequence I came up with on the guitar - I also added some synthesizer sounds, maybe also to remember them, but probably just to play with synths.

What struck me about it was that the whole thing was completely gone from my memory - I can only guess, but I suppose a GBM tumor killed off the small portion of my memory cells that were storing it. Like any other human, I forget things (and take notes to help myself bring the memory back to the front), but this was different - it was just gone. Sort of like something which had been in a bad sector on a hard drive.

Or maybe I simply forgot more completely than I'm accustomed to, and it's freaking me out - who knows. But definitely not a great feeling.

It was clearly me playing - nothing more than repeated variations on the chord sequence and experiments with echoing and stuff. Took some time for me to reconfigure the synthesizer to create the bass sound, and likely it wound up sounding different from they original. There's another synth track that was a direct audio recording (as opposed to midi instructions to be sent to the synth, like the bass track), and so I didn't need to rebuild that one.

I got a little fixated on restoring and polishing the recording into something I could listen to (like from my phone with headphones, even looped). When I do, I imagine it as a defiant message to the cancer cells that, despite their attempt, they were unable to actually kill this thing. Let's name it "stereotactic":

download mp3

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2019-06-18 23:50:04 UTC 2019-06-18 23:50 UTC

josh:  Done! with the first treatment anyway - it was about 20 minutes of radiation for the 2nd tumor.

18 "grays" (or maybe just "gray" without the 's') - a little less than I was guessing it would be, but substantially more than a single day of "fractional" treatment like I had 6-7 months ago (30 visits totaling 60 gray) and will start again probably on Thursday for the 3rd tumor area (60 more gray, I think, so the 9-ish month total will be 138 spread across the three different places - I probably got more than that every day living close to the Pantex plant when I was in elementary school - haha - joke. sort of a joke. maybe not. hmmm.).

Feeling good - sleepy, but good. I like the thought of that returned second tumor getting capped.

I have been on chemotherapy called lomustine - you take the pills once every 60 days. I took it last in April, thinking we were going to start radiation back then.

The progression of my tumors in the last two months verifies that, like other chemo drugs, lomustine alone doesn't do much to glioblastoma unmethylated wild-type. I'll get some new pills probably tomorrow or Thursday and they *will* hopefully make the fractional radiation treatment more effective.

Love you all! I'll post more soon.

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2019-06-18 01:23:43 UTC 2019-06-18 01:23 UTC

josh:  OK - I got scheduling for radiation. I'll get one day of treatment tomorrow for the returned second tumor:



(which has returned after being cut out in March),


and I'll get 30 focal treatment sessions (over 6 weeks, I suppose) for the area around the third tumor starting on Thursday:



this is the diffuse one that isn't a candidate for traditional surgery - looks like 2 tumors in this image, and there are one or two more of these if you go up/down, I think, but we're talking about it like it was one.

Both these photos are reversed on the left/right basis compared to what I've been posting -- whenever I see the MRI images at the doctor's office, this is true - I think because the photos are sort of from the bottom looking up.

The MRI viewer software I was using before reversed the image, so what I posted earlier had expected left/right sides -- the ones above need to be seen as if they're reversed (I would have reversed them before posting, but I would have also reversed the doctor's numbers). I'm still working on getting up to speed with Ubuntu MRI software, so these are actually pictures of the screen in the radiation department - with the bonus of the doctor circling the problem areas.

Added to the radiation I got at the end of last year for the first tumor (like 7 months ago), this does add up to a fair amount of juice (140 to 180 "grays" I think, depending on how much I get tomorrow), but the tumors are far enough apart that the total treatment for a specific area probably won't exceed safe limits.


And this time I get what has to be my friendliest looking mask yet:



(yikes!)

Now the song. After that mask, we all need something to help us relax.

I'm running out of songs that don't have a sort of deathiness going on, but this is a happy song. This is me on guitar/ukulele/banjo, and I did the 'oooh' sounds in parts of the song. All the rest of the vocals are my good friend and vocalist Ron. We're covering a song called Dark Hollow by Bill Browning:




It didn't occur to me that I can't play the banjo until it was too late.

If you're curious about the ukulele - and of course you are - I got it from my grandmother, who got it from her uncle Dwight Marfield. A friend of mine pointed me to his IMDB page which has a trivia entry saying: "As a musician, he played Ukulele on stage and he worked and played with blues man, Leadbelly." -- I decided that says that he played this ukulele with Lead Belly - and now you're hearing it :)

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2019-06-11 19:51:42 UTC 2019-06-11 19:51 UTC

josh:  Hey everybody

I got another MRI last Thursday. I very recently changed the operating system on my 11 year old Macbook Pro to Ubuntu linux (I was stuck on an older Mac OS that stopped running some of the stuff I wanted), and I haven't yet installed MRI viewer software so I can't post pics right now, but I'll work through that soon.

The short of it is that the third tumor has grown, and that the second tumor is back and growing as well. The good news was that the area around where the first tumor was is stable, and that there does not appear to be a 4th (or 5th, etc.) tumor, as I think some people had feared there would be by now.

Currently looking at radiation options -- my main hospital has reconsidered using "focal" radiation treatment in the areas of the two active tumors, but doesn't see attacking the tumors directly with radiation as an option (this is much more encouraging than completely ceasing treatment, which kind of had happened earlier -- the change was nice). None of that yet, though - the two tumors are still symptom-less.

But I *think* the new hospital I have been talking to will treat both the tumors (directly and with a lot of juice) and the surrounding areas. Even though it's aggressive to do that, it's more attractive to me, because I feel like it could have a longer/better result -- and, to be up front, maybe be more likely to spare me from the right temporal lobe cancer-necrosis symptoms. I fear these based on the symptoms I got from the first tumor in the left temporal lobe - not fun.

This bolder approach could have worse side effects than just sticking to focal treatment of the areas, but I'm leaning toward risk-taking, given the dismal survival rate of disseminated glioblastoma. (And, I admit, abject fear of those symptoms -- think like if Franz Kafka and H.P. Lovecraft wrote a short story together, and you're in it.)

The breadth and strength of the medical community in Houston really stands out to me now -- the size has always been hard to miss :) -- I'm extremely grateful to be looking at so much medical horsepower so close to where I live.

I'll post again soon with images and with more information about where I'm going with the radiation. And another song.

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