And So it Begins...

My name is Terri and I have recently started my newest journey.  For some time, about six or seven years, I have known that I have a rare genetic mutation...a mutation that I have passed on to my son, who has been living with an extremely rare form of cancer for the past twelve years.  He lives a full life, unencombered by his diagnosis. 

I have known that this mutation predisposes me to a whole host of rare cancers and conditions, including paragangliomas...which, as I understand it, are tumors that may or may not be cancerous and often interfere with certain functions of the body.  Disclaimer: I have zero medical training and am only expressing my understandings in this blog. I refuse to google these conditions, so please understand that my knowledge is limited...very limited. 

That's all the background I'm offering right now...because this blog is about my journey...and if you've read my other blog, Things I Know, you know the tone of this new story will be about the journey, the joy, the feelings, the possibilities...not the details. So here we go....

At my son's last doctor appointments, first with the genetic councelor and then with the oncologist, as they ran through the list of symptoms of paragangliomas, all of which my son had none...I realized I had every single one.  And so, my journey begins. I have more than a months worth of waiting before I can even see the doctor, but I wanted to write this down now. 

Is it weird to say this revelation is a little bit of a relief?  I've had this mixed bag of seemingly unrelated and mostly minor ailments for so long, that to have any sort of direction feels comforting. I'm not going crazy...I haven't suddenly become a hypochondriac...I didn't become old overnight. Well, maybe I've become old, but that's a whole other journey....  

So, I face my own mortality.  My feelings are this: I have no fear of death...I believe in an afterlife...I DO, however fear dying. I don't like pain, lol. So there it is...I admit it...I'm a chicken. My son has never developed paragangliomas, so I don't know much about them.  Truth is, I don't even know if I have them.  The MRI's  and CT Scans have not yet been done, but you know when you just know?  I know. 

The limited knowledge I have about paragangliomas is that they are rare and most doctors don't know much about them.  I guess I'll find out...and so will you, if you follow along. Till then...