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on June 16, 2024

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I cannot believe how much sleep I am getting....

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TedJune 17, 2024 at 11:40 AM
about 16-20 hours per day
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How did we get here?

Utah ~1994 At this time I was seeing orthodontists and it was noted that my overbite was too big to deal be correct by any other means but by surgery. I didn't know what I was getting myself into. The surgery needed to break my jaw, move it forward, lock it in place with 2 screws (titanium I think) on both side, and then have my jaw wired shut for 6 weeks. I was always under the impression that when my jaw was unwired I would be able to go about life as normal. Little did I realize that my jaw would be extremely weak, unable to open more than a pinky's girth (I am sure there is a better word) and the pain of trying to use my jaw was very real. I lost a ton of weight during that time and there were a few jokes about it being so effective as a dieting method that it might start to take off :-) After the surgery my jaw never really worked 100%. Needing to slide it to either the left or the right to open my jaw, occasion jaw pain, clicking and I am sure a...

Things are getting complicated....

Ok so DNA sequencing came back and it opens up more options for us....in a good way....but more choices means hard decisions with so much on the line... The Good News Confirmed Oligodendroglioma (better prognosis) and not an Astrocytoma (worse prognosis) CDKN2A and CDKN2B (sometimes written as CDKN2A/2B) are present and have not mutated away. This is good as they are genes that help suppress cancer. This indicates a better prognosis and a lower rate of spread. Mutant IDH-1 and not Wild type. There is an inhibitor for IDH-1 cancers (more on this later) 1p/19q is missing, this makes it easier to treat. The Dana Farber brain board (All of the neuro-oncologists + neurosurgeons + Neuro Radiologists) met and discussed my case and they have a strong recommendation for next steps. The Less Good New The Tumor Mutational Burden/Megabase: 6.844. If (in general) it were 10 or above immunotherapy might have been an option. The more mutation there is the higher ...

Zevatrons, colliding neutron stars, cellular suicide switches and Frankie the x-ray machine operator at LaGuardia

....Needless to say I have been learning a LOT with some crash courses in biology, cancer, and ionizing radiation. There is some really fascinating (albeit terrifying) stuff going on with me right now. I am choosing (at least at this very moment(read: subject to change)) to focus on the fascinating side of things. Back to the first post that I made in this journey how did we get here ? There is some more interesting information (from a science perspective and less from a personal perspective). Turns out that most likely this is NOT caused from some sort of inheritance (as much as I would like to blame my Mom, it looks like I can't do it at this time). It looks like this is more likely to be caused by environmental reasons. Which is where the ionizing radiation comes into the picture. Some of the questions that were asked in this investigation were about me having lots of scans as a child for some disease. Which....I didn't....as far ...

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