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Wednesday, October 18, 2017

Results, etc.

So, I’m at Doc Plotkin’s yesterday, waiting to get the big news – do we slice open the bean this year or no . I was filling out the usual intake forms – a lot of these questions really bring out my fluorescent snark beast. Like:

Any new medical problems since last visit? If so, what are they?

Seems a benign, standard issue medico inquiry, right? Yeah, unless you’re me.

My reply?
Balance is worse
Shaking is worse
Husband is STILL dead
That The Amazing Bob is gone continues to be a big fucking deal. I’m sad, beyond tense and angry. I want him back, DAMMIT! Is this related to those pesky tumors? No and yes – isn't everything under the sun related in some way?

Do you have hearing problems?
In that I have none, yes. Having no hearing is a problem. Especially today when it just, flat out, breaks me that I can’t listen to Buffalo Ballet, and hear Cale’s sonorous voice and viola.
Probably TMI but, hey, THEY asked!

Do you have confusion or memory loss?
Do you have confusion or memory loss?

Did this question appear on the form twice, one right after the other, intentionally? Was this meant as a funny, a check on whether the patient’s paying attention or was it simply a glitch in the Matrix? I drew an arrow, calling it out, and wrote clever.

Do you experience fatigue?
Eh, sometimes. It’s my husband’s fault as he is STILL dead. Dammit.
Do you feel anxious?
In this age of Trump, who doesn’t?
The results, as anticipated – though two of the meningioma motherfuckers are larger, no surgery this year. YEA, huzzah, YEA!!! Why wait? Why not crack me open and scoop those homely, fat blobs out now? Because:
  •  it would hurt and knock me out of action for a couple months or so
  • Bast only knows what complications and other horseshit would come along for the recovery ride 
  • they’d need to shave ma tête and I just got a really good haircut

We wait. Who knows, by the time I’m nasty symptomatic, the tech may’ve advanced such that Star Trekkian devices can dissolve the ugly bastards without slicing me up. NASA, with the QDI LED technology, is on the path!

What else came out of yesterday’s annual? The good doc proposed that I sign up for this Harvard Med research study:
Resiliency Training for Patients with Neurofibromatosis 2
The purpose of this study is to test comparatively two group based interventions aimed at improving coping with stress and NF2 medical symptoms. Both interventions may also improve quality of life.
 Clunky wording that comes down to this – they’re looking to help folks deal with la vida loca that comes with this nasty-ass familial inheritance. Stress amelioration schemes.

In writing to the folks heading up the study, I let them know that, I’m no newbie to NF2 and my monster stress is also from the recent widow action as well as being a Dem living in the Orange Menace’s insane America. They seem to still want me to participate. Huh. This ought to be interesting.

In other stress reduction efforts, I’m gonna get back into the pool at the Y. Not the same as my Silica heaven, not by a long shot, but still soothing.

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