…Where there never was a blog…

As you can see, I’ve started that blog I’ve been talking about.

Let’s start at the very beginning….

It’s 4/20/2018, I’m partying it up in NYC with dear friends, we’ve been to a speakeasy bar, a trendy restaurant, and now we are post gaming it in midtown, listening to music. In a haze of tequila and red wine, I looked at my phone and saw a new notification from 23 and Me. A good friend had told me to purchase this kit, mostly for fun, but that there could be some good health developments added. Coming from an adopted father, being “pretty sure” I was a Jew, with my red hair and blue eyes, I was always curious of my lineage, I’m full on Ashkenazi(OY!)

So far, all fun and games … I don’t flush when I’m drunk, my pee can smell like asparagus, apparently I’m a sprinter (suuuuure…..)

Then popped up: YOU HAVE A NEW TEST RESULT. For BRCA variants. Oh I’m not gonna have that.  The chance is so slim and I’ve really only heard of Angelina having it…..

Are you sure you want to know, it prompts? um, yeah, sure, I have no risk of anything else, no family history. Are you sure? Yeah, the room is spinning a bit, but ok… ARE YOU SURE? YES, DAMNIT SHOW ME NOW, YOU STUPID PHONE.

POSITIVE FOR ONE VARIANT OF BRCA2… well, that’s not good…eh, I’ll drink more wine…

So….a week passes.  What a fun night that was, made a new friend, ate good food, and wait did I find out I had a genetic mutation? Hmmm I should probably follow up on that. Ok, maybe tomorrow….

Or the next day, or next week….

Alright May 1st, I’ll go have them take my blood.  It’s just an internet gimmick test, some say.  I’m sure its FIIIIIINE.

I call my OB.  They’re pretty lax about it, so I figure maybe they’re used to false positives.  They send my blood work off and I wait a full month for the results of a full genetic panel(48 variants – 23 and me only tests for 3).

I get the call.

It is not fine.   I am BRCA2 positive.  Shit.

well…there is zero history on my mother’s side(nor does she carry the gene)  but my father was adopted – so this came from him (he died in 2010 of non BRCA related causes, so thanks for the legacy, daddy!) Finding out was a total shock. Nobody told me to get this test, having come from an adopted parent, but thank goodness I found out.

After careful consideration and meeting with more doctors than I can count, reaching out to organizations, reading, researching, and discussing with women who have made all different decisions I came to mine:

On Sept 19, 2018, Yom Kippur(OY again!), I will undergo a prophylactic bilateral mastectomy – or PBM(I know the lingo now). That’s right, bye bye boobs(mine are fucking awesome by the way), hello, foobs(another new term!) The procedure mostly prophylactic, as they have already discovered something that could turn into cancer – something I can’t pronounce. So without this test in 4 years I could have walked into my first mammogram with breast cancer. Made the decision a little easier. I’m staring at my superwoman mastectomy pillow as we speak, feeling a little like a super hero (mostly because I got this blog thing to work!)

In these past few months I’ve had more mammograms, MRIs, more ultrasounds than I can count and two biopsies(holy hell that’s a big needle!). I’ve heard words I’ve never heard before. I have lined up an INCREDIBLE team of doctors who treat me like a person, not a statistic. My choice is this surgery or a life time of fear, anxiety and constant surveillance…my risk is as high as 80%, but I am 100% at peace with this decision. I’m good. I’ll be what they call a “previvor”.

I LOVE my boobs, they fed a human. But I love my life more. This will lower my risk to below average at 1-3% and there’s a sweet little girl(and her daddy) who gets me through each day.

Stay tuned for more…. follow me on my journey, catch up on the past few months as I figure out this blogesphere and this mastectomy stuff, and don’t leave before “Blog Part 2: how many lady parts can Emily get removed!?”