Tuesday, March 5, 2013

I sorta kinda finally have an answer ...

I lapsed in writing everyday, I know.  I just was angry and frustrated and didn't know what to say.  I had a minor spat with the doctors last week because I was PISSED that I had no answers, that I fstill felt horrible, that life was passing me by and they could tell me NOTHING!! It seemed like the results were taking far too long to come back.  I was angry and confused and sick.  And sick and tired of being sick and tired.  You know the drill ...
So, today, my meek little self decided to attempt contact again because we are almost halfway through this week and I still feel bad, and feel like I am getting worse again.  So, I emailed the doctor to see if there was any word.
He wrote back with a surprising answer.  My biopsy was negative for malignant cancer cells but shows granulomas.  It was sent to Stanford to confirm a condition called Granulomatosis with Polyangitis.  It's a vasculitis-condition involving the inflammation of the blood vessels.  It was what they originally set out to diagnose when the blasted cancerous gland was removed from my neck.  My doctor emailed and stated since I am very symptomatic at the moment that we needed to consider starting treatment for GPA.  I don't know how this works with my upcoming radiation treatment.  I am sure we will touch on that in our appointment tomorrow.
It was comforting that he had his assistant call me right away for an appointment tomorrow.  Most of the time it's like ... next week or in a couple days, etc.  I don't know if I am going to be a full on GPA patient ... I am hoping to at least get a small dose of the medication so that I may feel good.
I've read reports where people have been diagnosed and given the meds with an immediate improvement in how they felt.  Oh please let this be the case for me.  I hate hate hate being a lazy ass but I can't do anything else.  Every time I try to be up and moving, I am EXHAUSTED.  Like, an exhaustion I've never felt before.
This has to help, right?
At least, it has to help after radiation is done at least.  I don't know if I can take the meds and do radiation together.  I'm scheduled and set up for it and gonna feel like garbage while doing radiation anyway so ... I can always start as soon as radiation is done.
I'll have more to report tomorrow after the appointment, but for now ... that's where it stands.  It's an answer.  It's something.  I don't feel like the ball that's bounced around from person to person anymore.  I feel like I have a direction to head for once. 
Unfortunately, I also feel absolutely miserable today and wish I could have just gone home.  Or stayed home.  I was feeling brave and came to work today. 
I'm gonna be off for two months or more, I better enjoy these work days while I have them. But, they are hard to enjoy when one feels like they are going to collapse any minute.  Not to mention the hot flashes!
Oh, and I have the hiccups too.  Joy.

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