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2019-09-21 17:17:15 UTC 2019-09-21 17:17 UTC

josh:  Good morning/evening/night/etc. :)

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!!!

Here's an article he told me about:

Neurons promote growth of brain tumor cells

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.

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