Sobered

A week from now I'll have gotten to NIH, settled in, and gone through my first day of tests and scans.  A week from now there will be less 'fear of the unknown.'  A week from now I'll have met the amazing people who have really had my back from 3000 miles away this whole time.  A week from now a new chapter of the adventure begins.  Maybe it will be my only chapter.  Maybe this is only the beginning. 

As I've done my pathological googling and found other people dealing with tumors of this kind and the fall-out that can happen as a result, I've read the stories of quite a few people who've gone through incredibly difficult journeys.  I've found people with the SDHD mutations which cause the tumors to recur and people with SDHB mutations which cause the tumors to metastasize. 

One of those people was Laura Becktel.  She fought hard and long.  She had tumors on her adrenal gland/kidney, in her neck (at a slightly different place than mine), and then metastases to her bones, skull, and liver. 

She gave her life in the fight against the cancerous form of this disease today.  I am sad and I am sobered to know this.  I only knew her through what I read of her story on various websites, but I know she fought courageously and then shared her story and joined with others to fight the rare and mysterious nature of Paragangliomas and Pheochromocytomas.  She banded together with other 'rare birds' so that others who came along later wouldn't have to look so hard to find one another and to find resources to get the best treatment possible.  It's because of Laura and people like her that I was able to find out about NIH so soon in my journey.  It's because of her and others who spoke out and banded together that I found avenues of support from people who've gone through similar diagnoses.  From what I read of her story, these support resources and avenues of information were not so readily available for her just a few years ago.  I'm so thankful for the impact that she made with the work that she did.

It's scary to see the reality of this disease in such a raw and tragic way just as I am finally about to embark on the part of the journey that will bring us both treatment and more answers about what we're dealing with.  I know that her story is not my story.  I know not to jump ahead and assume the worst.  But it makes me take a deep breath to hear this news, nonetheless.

I don't know what we'll learn after our trip out East.  Maybe we'll find out that the likelihood is good that we won't see any other tumors or complications further down the line.  Maybe we'll find out that this may well be only the beginning.

Regardless, I hope to go through this with even a fraction of the grace and courage that Laura had as she fought for her own life while battling for the rest of us.  I wish comfort for her family and those who loved her.