It's Saturday in Houston, TX - we had a lot of rain recently, but it seems mostly over. So far the day is nice and not too hot, which it has been recently.
I don't have much news about me -- I'm still working, and it's more difficult than it used to be, but do-able. My two prescribed treatments are still Optune and Avastin. I'm getting *tons* of support from family, friends, coworkers, and people I barely or don't at all know. Very grateful for all that!
A good friend sends me links to articles, and I've found these very helpful. I don't have the energy or the stomach to read about glioblastoma on the internet too much, but this friend and some others have filtered the search results in a way that works for me - thanks!!!
That doesn't sound positive, and it's kind of not :) But it brings some very interesting and for me compelling views about what's going on -- really encouraging, actually.
One of the things that I find challenging -- and I think other GBM patients must also -- is describing the symptoms of the cancer. It doesn't help that the symptoms are wildly different depending on which parts of the brain are being messed with.
As I mentioned, I have disseminated GBM (mgmt: unmethylated, idh-x: wild-type) currently with three separate tumor areas which appeared in this order -- left temporal lobe (I'm right handed), left parietal lobe, and right temporal lobe.
My first tumor (left temporal lobe) had the most symptoms prior to surgery -- things I couldn't and really still can't describe because of the impact of the tumor on the main language processing portion of my brain. Doctors call these symptoms "seizures" - haha :) - to me this seems simpler than maybe it should be. Maybe I'm wrong.
I found the article difficult to read because it hits home. It says that thinking brain cells - neurons - are communicating with cancer cells through synapses. This jumps out for me, and I wonder if it helps explain some specific GBM symptoms. Probably it helps explain why the symptoms can be difficult to talk about (and to listen about!).
One of the reasons I tend to stay out of GBM discussions on the web is that (I think) I've seen patients get blackballed from discussions when they describe GBM as a "demon". Does the article help explain why someone would say that? I kind of think so.
After talking about how neurons communicate with each other through synapses the article says: "Researchers and physicians ... have now discovered that neurons in the brain form these kinds of direct cell-to-cell contacts with tumor cells of aggressive glioblastomas ..., thus transmitting impulses to the cancer cells."
(that describes one-way communication, I guess, but my experience really feels like two-way communication, mercifully silenced with a scalpel -- at least so I can't hear it very well anymore (even though cancer cells talking to neurons doesn't really make sense -- I don't think neurons get cancer, so it wouldn't be GBM-neurons on the other end of the phone line? (ugh -- getting a headache)))
In this state, the prospect of getting brain surgery is scary - it is - but not nearly as scary as not getting brain surgery. Even if the result is only temporary.
Hopefully this and additional work will empower treatment. With my three "demons", I'm hoping the medical community keeps moving fast like it is.
Overall I find the article very positive (but very difficult for me to read :) ) -- sounds like progress to me.
josh: Hey everyone - I'm still here :) - I've been busy at work and sleeping more than usual.
Not much to report -- I will see my doctor again in a couple of days, followed by another infusion on Saturday. I have a light headache from time to time, but not bad.
Here's a recording I made close to 9 years ago - no name for it. I think I intended it as a lullaby for my youngest daughter, who was like 4 at the time. I thought it would be a nice follow-up to the last aggressive music post. I don't have a name for the song.
This is me on all the instruments. The electric piano thing is something we had bought for her to use - very small, and I think it was something we bought at a toy store. It had a setting that would add a second note to any note you pressed on the keyboard, and that's what's in this recording.
josh: Hello again! I'm having a great weekend and I hope you are too.
I've crossed the 2 week mark since I completed radiation, and I seem to be on the up. Back at work last week -- a little tiring, but hopefully that will improve as I recover from the radiation. I got a spine MRI yesterday but haven't seen the results yet.
Worked on getting some more of the music studio stuff active recently -- much is still unplugged. I recorded another guitar riff that I never did anything with - it was maybe too aggressive for a lot of things, and I wasn't sure how it would relate to anything.
But when I think about pushing back on GBM, it doesn't seem too aggressive anymore :)
I've been timid about bravado when it comes to terminal brain cancer - not sure it helps and I've read about the futility of it. That said, it feels good to put some energy into guitar playing. Feel free to apply any context that seems appropriate - doesn't have to be brain cancer -- could be recovering from a bad relationship, or shyness, or I dunno, upcoming elections :)
production notes: I recorded this last night, so I think it's the first post-cancer-diagnosis recording of me playing that I've posted (I've been posting post-diagnosis mixes of prediagnosis recordings).
I planned on using a real British kick drum, but it was too much work to get the recording equipment set back up around the drums right away, so this is a "virtual instrument" drum - I'm not a drummer anyway. I did manage to get some old German microphones cleaned up and working again. I used them for the guitar.
The acoustic guitar is real. It was made (and played) in Texas.
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?)
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.