Monday, February 29, 2016

New mutant and dealing

My whole life I have unknowingly had this mutation and had no idea....but your axis totally shifts when you know.  For me that happened on January 13, 2016.  When I saw the test result:  


The odd thing? When I first saw that positive I felt a moment of purer relief.  Because since my mom's results came back positive 3 months before I had been living in this grey area where I didn't know if I had it or not.  At least now I KNEW.  Because in my heart I knew I had the mutation from the moment I heard my mom was positive.  Somehow, I just knew.  But until that test result confirmed it - it could have just been my paranoia.  There was a moment of relief in knowing I was positive and wasn't crazy for knowing before.  Then reality sunk in.  

Being positive for BRCA2.....well....I'm now affectionately called by some in my new community as a mutant.  That may seem cool at first, but I'm a mutant with no cool super powers.  I can't see into the future, fly, climb buildings (aside from taking the stairs), or hear people's thoughts.  No, my mutation means I am now classified as "high risk."  I am now in a special category that when the cancer center hears this they immediately get you in asap.   Yeah. I said it- the C word. Cancer.  Not high risk for high blood pressure or cholesterol - high risk for cancer.

Also a fun fact of being a mutant?  You get to do a bunch of "fun" tests early and often- all to monitor the ticking time bomb that is your body.

Well I am now over a month in the "know" of my awesome new mutant status and for the first time I feel like I can joke about it.  That although it sucks and it's not something I would wish on anyone, I'm ready to write about it.   I recently found a very inspiring blog and one of her top tips was to start blogging.  For now I'm keeping this private but it does actually feel therapeutic to just write down how I'm feeling about it, and find my humor again about it.  

I'm one of the lucky ones- I did all my surveillance and everything came back clear- NO CANCER!!!  It was such great news...or it should have been.  When I found out I didn't feel any relief.  And that was upsetting.  I kept waiting for the other shoe to drop and feel relief but when you are told you don't have cancer (yay!!) but you have an 87% likelihood of developing breast cancer in your life time and you need to decide ASAP (at 31 years old, mind you) if you want to keep your ovaries and boobs...... It's hard to celebrate.

So after about a week of feeling in total free fall freak out mode which including therapy by way of chocolate, I hit the bottom.  I had an ugly cry with my mom and started researching and reading hard.  Even though the research was terrifying that was my first step, which was very important.  I learned about DIEP flap surgery which turned out to be what I ultimately decided would be the best fit for me.  I'll get more into that later.  I talked it all out with my boyfriend and he said the words I guess I was waiting to hear "I want you with me and healthy as long as possible.  Please, Colleen have the surgery. I'll help you."

And then I knew- I was going to have a Prophylactic Bilateral Mastectomy.  And within the next 6 months.  Because that first consult with a breast oncologist scared me half to death- I knew for my own sanity and peace of mind I needed to act quickly.  And as soon as I made the decision...I felt like I could breath again.  I still had the weight on my chest but it was a dog now instead of a horse.   Sometimes you don't even know what you need until it smacks you in the face.  For me it was knowing I was going to have somebody there with me. 

to be continued....