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braindamageforbeginners · 6 years

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FAQ

I figured that it was finally time for another FAQ, Although, I did just get another injection, yesterday, so I may be somewhat woozy. And we’re only gonna cover three subjects. so it’ not this is gonna definitive.

1, What’s it like having brain damage? Well, what is it like? If you’ve ever spent an entire night awake (sorry, parents), you have clinicably detectabe brain damage. You just don’t have the bonus of freaking out.

To give an idea of how subtle this can be, from 200-213, I had “Glue on the EEG” severe frontal lobe damage. This is absolutely true, and some of you readers are stcratching your head, any saying, “Boy that explains things.” The good news - for me - is that the tumor - and -effects - are currently limited to my somatosensory lobe, so most of my symptoms are physical, And noticeable

2, What’s it like taking large array of dangerous, experimental substances? I’m exaggerating that; it’s just the experimental combined with a wide array of dangerous, known substaces. I’m not going to lie; it sucks, the pain and side effects suck. I’ve written else where about modern chemo, and it’s loads better the old stuff (sort; I’d imagine, Temodar delivery and and dosages have changed, just like all other brain tumor stuff.” but it still sucks balls. I wake up at odd hours, I have severe faitigue, let list goes on.

3. Don’t you dislike taking all these drugs? Yeah, they’re a pain in the ass, hard to organise, and expensive. However I’’ve already hit this one elsewhere, The subtext is clealy “that’s unatural.”Folks, if I turn 35, that’s unnatural. Once you submit to this thing; take all your drugs, go all the way. Dying of a treatable disease is one of the worst forms of suicide I can think of; and when people say “drugs,’ they actually don’t really mean the Temodar or stuff I get on infusion days; they mean my antinausea, anti-emitics and psych drugs. To which my usual, defensive respose is, “Shut up and gimme the drugs.” This wouldn’t even be an issue, except Dad recently asked about the anti-depressanst are like which is now the standard Boomer issue to neuropspychiatric disease. The context was some last scare- news article (the scary science being that they now have data from several generatoins. And this a teacheable moment. It’s like being perfectly healthy, except having a messed leg that everyone pretends doesn’t exist (for this hypothetical to work, the family has to really stupid). However, if you went to any decent school, they’d be worried about brittle bone disease or child developmeng. So, you’d get sent to the local orthopedist for surgery, or crutches, or a really cool flame can. Anti-depressants started getting a bad rep in the 90s because Prozac was okayed for low-level chronic depression, and doctors started hearing, “better than well” and any time technology bridges the gap between our perfect, idealized selves, and what God intended, there’s pushback.

In my case, I will need intensive neurological and psychiatric care for the rest of my life. And sadly even though my physicians are willing to give me access to some exotic stuff, the Puritanical crowd need not worry; even though I felt awesome for a few afternoons while on low-dose steroids, I was never medicated above “functional. Also, if you’re ever in my situation, take the antidepressant and antianxiety drugs from minute one, There will be a strong inclination to curl into the fetal position, and you can’t do that.

4. What’s the current life-expectancy?

Unknown’ when Mad Scientist checked in, she said I could expect a few years before recorrence. On the other hand, I’m due for another MRI in a few weeks.

However, bigger news that Dad claims he sees little hair growths on my mangy, nuclear scalp.Great Krakrn bless him and keep him safe.

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