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2019-08-16 23:23:04 UTC 2019-08-16 23:23 UTC

josh:  Hello - happy Friday

I got another MRI earlier this week and got the results today. (The MRI was a week earlier than previously planned, so I could get on a clinical trial before the opening went away -- nevertheless, I decided to pass on the trial) Based on previous imaging, I was a little worried that there would be a bunch of new tumors since the last MRI, but there are still only three - yay!

It does look like all three are now active again and have grown some. I'm not planning to post the MRI pictures -- they're similar to the older ones, but bigger. The radiation is maybe also lighting up the MRI a little, so I might wait to do more posting until my next MRI.

The downside is that we're seeing that the radiation didn't stop anything in its tracks, like I was sort of hoping, but at least we don't see additional tumors.

I started a new treatment called "Optune":



I had tried Optune before, but couldn't pursue it because I wanted to participate in a clinical trial that wouldn't allow it. The trial didn't work (unless you count two new tumors as "working" I guess), so now I'll use this device and also move into a later stage chemo treatment called Avastin (an IV every two weeks, I think - I'll start tomorrow).

The doctors hesitate to use Avastin until you try other things, because using it will disqualify you from trying those other things -- but now there's no reason not to go for it. Even though it's sort of a one-way trip from a treatment perspective, I hear mostly good things about it.

The Optune device requires some devotion and extra work -- I'm a little bummed because I'm too lazy for that, but it's worth a try.

I have a headache that was getting worse for the last couple of weeks, but now seems to be getting better. My theory is that it was 100% caused by the radiation treatment and now things will get better for me each day. Based on the latest MRI, my doctor mentioned that some of the pain could be caused by the cancer getting bigger -- that's a bummer, but at least the pain is going down, not up, so that makes me think that a significant portion of it is coming from the last radiation treatment, so I'm looking forward to less pain in the near future.

(and whoever it is who's trying like crazy to break into my server - would you stop?)

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2019-08-1 19:54:00 UTC 2019-08-01 19:54 UTC

josh:  done with radiation (again)!



There were two treatments this time for different tumor areas, but the first was only one day - the second took place over six weeks. This bell rings for both. When you add them to the first six week treatment about 9 months ago, the total dosage is 138 Gray (60 last fall/winter, 18 on one day in mid June, and another 60 over the last 6 weeks..

I confess that I really don't know what that means. Also, I think it's important that each treatment was for a separate portion of the brain -- first the left temporal lobe, next dura in between the left and right parietal lobes, going into the left parietal, and the third in the right temporal lobe. I think the overlap of the three areas was minimal.

I'm kinda tired.

Tomorrow I'll visit a Phase 1 trial office and see what might be available. I'll post more soon.

Next MRI is Aug 21.

Have a great day!

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2019-07-21 00:10:12 UTC 2019-07-21 00:10 UTC

josh:  Happy Saturday

I'm most of the way through the radiation treatment for the diffuse right temporal lobe tumor - I have a little less than two weeks left.

Here's another picture:


(happy radiation friend)

I'm losing some hair in new places - I'll probably take another selfie when that stabilizes, but that likely won't happen until a few weeks after treatment ends.

I feel pretty darn sleepy, but it's a good sleepy, which is nice.

Thanks again everyone!

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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 -- despite their attempt, they were unable to actually kill this thing. Let's name it "stereotactic":

download mp3

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