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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" - 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 grays) and will start again probably on Thursday for the 3rd tumor area (60 more grays, 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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2019-05-24 21:00:56 UTC 2019-05-24 21:00 UTC

josh:  hello - another quick update

I'm expecting to get another MRI in a couple of weeks -- the radiation department at my hospital will have a look and possibly reconsider whether to stop treatment.

My surgeon confirmed that this third diffuse tumor is not something that could be surgically removed without a lot of collateral damage.

I also visited the radiation department at another hospital nearby, and they seem ready to take a more aggressive approach (they have different equipment, as well), but they'll also wait to see the MRI results.

Both of these are highly regarded hospitals/doctors/teams, and I'm lucky to even get even the first appointment with either one of them - I really couldn't be in better shape in this regard.

Also, I had a neuropsychology examination earlier this week and saw the report today. I had similar tests last October. The report shows that I'm hanging in there, and even improved a little since October - great news.

I'll post again when I get more info - I'm feeling great today and I hope you are too. Happy Memorial Day weekend, if that's on your calendar.

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2019-05-16 02:13:42 UTC 2019-05-16 02:13 UTC

josh:  Hello again -- hope all is well

I caught up with my radiation oncologist today and got a little more information. The group of doctors considers the GBM to be "disseminated", which I'm reading about now -- basically the tumors are far apart and not connected in any visible way. The dissemination is really rapid. As I mentioned, the second tumor appeared about three and a half months after the first, and what we're supposing is the third tumor appeared more like three and a half weeks after the second.

The team doesn't believe any additional radiation treatment -- whether the traditional type or gamma knife -- will help the situation, and that it will merely do damage. I believe they're thinking the same thing for regular surgery. We talked about the whack-a-mole game where you keep hitting the critters that pop up, but more of them pop up in other places (and when you're getting hit in the head, yes, it hurts :) ).

I asked her if there had been more time between the appearance of the tumors, say a year instead of a couple of months (or weeks) whether that would influence the analysis, and she said yes. I remember that my neuro oncologist mentioned that my cancer was more aggressive than they had seen before -- I suppose that's something, since I'm going to a well renowned cancer hospital.

I'll be meeting with another oncologist at a nearby hospital and looking for other alternatives. Wish me luck!

I feel great, and today was a really good day, I guess with the exception of the topic of my discussion. I recommend that you don't look up disseminated glioblastoma, but if you do, I have to say that the survival time seems completely unreal to me, and I have to think that I'll be around much longer. But I'm not getting cocky -- bravado doesn't really work with GBM.

In many ways, (and except for the times when I take chemo pills) I feel better physically now than I ever have, and I'm in better shape -- strange position to consider.

I'm choosing to have another great day today. Hope you have one too.

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