pairofgenes

Two years, five surgeries and a lifetime warranty.

In Uncategorized on June 26, 2014 at 12:05 pm

On June 26th two years ago, I was heading into what would be thirteen hours of surgery.  Most of you know the entire story, have followed it from the months of decision making pre-surgery to the surprisingly difficult post-surgery months and now years.  I have one more step in this journey and it turns out it’s going to be as significant as every step I’ve taken thus far.

I never anticipated breast reconstruction would be such an arduous, intricate process, but it turns out it’s tougher to achieve a perfect rack than one might think.  With that said, my steadfast plastic surgeon wasn’t going to quit until he got it right, and indeed he did.  Up until this last go around of surgery, I continued to second guess the choice of reconstruction.  But at the end of the day I’m glad I did it.  At the time, my doctors really pushed for it saying that I was 40 and single and with all the changes I was about to undergo, it would be too easy to throw in the towel with regards to dating and sex and oh yeah, love,  in my future.  So I followed their lead and in doing so have been given another chance to reach out to people with these nasty little fucker genes.

At the suggestion of a friend, I contacted a tattoo artist, Zoey Taylor, and sent her an email by way of introduction giving her a brief history regarding my BRCA 1 & 2 genes, my choice for a prophylactic mastectomy and hysterectomy, and the fact that I wanted something beautiful on my body in hopes of reclaiming what I’ve lost along the way. While there is an amazing tattoo artist, Vinnie Myers, who is known for tattooing pigment for reconstructed nipples, I wasn’t looking to have what I had before this all began.  And frankly, if I’m going to get tattoos- something I’ve ALWAYS wanted to do and haven’t,  they are going to bold, glorious, bad-ass tattoos.

So I went to meet Zoey and immediately knew I was in the right place.  After chatting and looking at images that I’ve been collecting for YEARS, we made a plan of attack.  With reticence, she asked if I would consider being interviewed for a documentary about tattoos and the impetus behind them.  The documentarian would also want to film me while being tattooed. Now- I have no problem flashing my new boobs to anyone who asks- they’re not really mine, so I have no investment in hiding them, but I have SERIOUS body image issues.  Like, SERIOUS issues!   But some things are even more important than my flabby tummy- as hard as that may be to believe.  While not keen to be seen half naked for an audience, this serves a larger purpose.

I started this blog, roughly two and a half years ago, because I know of three people in the world who have both BRCA genes, and we’re all related.   I naively thought that if I put this out in the world, and friends passed it along to others, surely I would find people who were in the same boat.  On the journey, I have made contact with so many BRCA positive women, stories sometimes similar to mine, sometimes vastly different.  Still, I have yet to find another person who is a carrier for both genes.  But somewhere along the way, the search ceased to be the point.  What replaced it is an ongoing desire to gather and disperse as much information as humanly possible in hopes of helping other women make this very difficult choice.  So, if I allow this experience, the process of getting my new (and after five surgeries, nearly perfect) breasts tattooed with bright purple dahlias, to be seen on film- I continue the conversation about genetic testing and prophylactic mastectomies and hysterectomies.  That’s good enough for me.  Flabby tummy be damned!

June 26, 2014 looks very different from the one in 2012.  And while I can’t predict the future, I can say with relative assurance, that it ain’t gonna be breast cancer that takes me in the end.

I went back to look at my facebook entry for the night before surgery and was awestruck by page after page of my ongoing battle cry.  Post after post you sent me into surgery with my very own cheering section:

Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

That’s how the light gets in.

Thank you all for getting me from there to here.

Take this, abyss…

In Uncategorized on April 25, 2014 at 10:02 am

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Public speaking scares the crap out of me.  As part of my job I have to moderate talk-back discussions after plays and prior to going on stage, my cheeks start burning up and I feel slightly vomitous.  So I’m not entirely sure what possessed me to throw my hat in the ring to tell a story- my story- in front of a bunch of strangers.  Partially, it was my friend Shannon who believes that stories should have numerous platforms.  Her storytelling is written, performed in monologue and brilliantly encapsulated in songs she co-writes and sings. BUT, she loves the audience.  She was born to perform.  I, definitely, was not.  

The topic of the evening was taking the plunge.  Unsure of how I was going to get through this, I tapped into the talents of my friend Alexis who trains people for public speaking. She did some kind of voodoo- I swear.  Along with pushing me to connect with the audience, which I did, she pushed me to make the piece far more personal than I had originally intended.  

When I’m writing here, behind the safety of my keyboard and the time it takes for these stories to reach you, I am able to keep a safe distance.  I find that after I’ve written my most painful entries, people are less inclined to speak to me about them and I’m often relieved.  Don’t get me wrong, I love comments left here- LOVE THEM.  The personal responses make me feel as though I’ve reached someone and that’s the whole point of putting this out there.  But this format creates distance and that puts me at ease.  Storytelling, to a group of people I don’t know about a story this personal, was terrifying as fuck.  But Alexis wasn’t backing down, she wasn’t leaving room for my fear and the piece evolved into something less about my circumstances and more about me.   Thank you Shannon, for pushing me to do it, Kristina for listening to it over and over and over again and Alexis for making it, and me, better.  This is my story.

 

Take this, abyss…

I am not a patient person.  I have often made impulsive, even reckless decisions, leaping before I look.  As I’ve gotten older, that’s mellowed, or I’ve mellowed, or both I suppose.  But I still want to finish everything RIGHT NOW- impulsively and inevitably being fast as opposed to right.  This though, is the story of my boldest and best decision.  The decision that taught me that taking the plunge often means embracing the marathon, not the sprint. 

I think it’s fairly rare for any of us to look ourselves in the mirror and say, “wow, aren’t I brave?”  Most of the time, acts of bravery are not planned, they are thrust upon us, borne out of a necessity for survival of others or ourselves.  We, none of us, sets out to be brave.  And then suddenly, there you are. 

Over the past year I have heard endless debate about whether or not Angelina Jolie is brave for having opted to undergo a double mastectomy based on a genetic likelihood (an 87% likelihood) that she will get breast cancer.  People have unlimited opinions on the matter, many without any basis of fact on their side.  I have an opinion, based on facts, observation and primarily, experience.

I am a genetic anomaly.  I inherited both BRCA1 and BRCA2.  With the exception of my sister and my father, I have never come across anyone who carries genetic mutations in both of these genes.  Yay, me!  When the test results were delivered, first to my sister who was battling breast cancer, and then to me, we decided to take the most aggressive approach to limit our chances of dying from cancer.  So I looked and looked, and then I leapt.  In June of 2012 I had a double mastectomy and a complete hysterectomy.  I was 40.   It’s okay to look, everybody does.

With both BRCA genes, it is not possible to calculate the risk of cancer.  For arguments sake, the doctors added 10% to any risk I had, giving me a 97% chance of breast cancer.  And the BRCA gene does not only increase chances of breast and ovarian cancer- there are in fact 5 indicated cancers associated with the gene so colon, melanoma and pancreatic cancer are not off the table.  But you can’t remove your pancreas, so breasts, uterus and ovaries were where the battlefield on my body began.

Was this choice taking the plunge, as it were?  I can say for sure that it made me sensible, pragmatic, but mostly, it significantly increased my chances of seeing my son grow up.  My harshest critics accused me of unnecessary self-mutilation.  But they hadn’t heard from a super star yet.

The choice, for me, wasn’t a choice at all.  I also happen to have Multiple Sclerosis (I know, I hit the health lottery) and with that added complication, I feared that my ability to fight any major illness would be impaired from the outset.  Also, let’s be honest, 97% is basically 100% so the breast cancer was coming, I just didn’t know when or how it would hit.  This was a scenario I could control.  But just because the choice was a fait accompli under the circumstances of my life, doesn’t mean that I for one second took it lightly.  The effects of reconstruction, which I just completed three weeks ago, after 22 months and 5 surgeries, not to mention early onset menopause have made for a challenging two years.  And challenging is absolutely a euphemism- at times it’s fucking hell.  And living through it, again, to me, not brave, just necessary.  So what am I doing here?  If none of this is taking the plunge in my eyes?

Because to me, the act of telling you about it is.  To stand in front of a group of people and talk about the most critical decision I’ve ever made- is something I’d never thought to do.  This part of myself that I put out into the world when I describe how devastating it was to hear my sister weep when I told her I had both genes too- much like I had when I found out about her.  Or the physical pain I suffered, first from surgery and then from my MS flaring so badly I had to be rushed to the hospital.    I am someone who always wants to be perceived as indestructible, and the more I have thrown at me, the more I fight to keep my armor holding strong.  Saying outloud- that I feel broken and cried for a month- everyday- after menopause hit like a car careening at 90 mph, or that I’m often pissed because I have no feeling in my breasts and I have no interest in sex, that I have failed to maintain an optimistic outlook throughout this battle, that I am in fact terrified that this is as good as it gets with my health, with my life.  Putting those weaknesses out into the ether- that’s my version of leaping into the unknown.

In my family, there’s not a lot of room for wallowing, so we don’t.  My dad is fighting his 8th cancer compliments of our genetic make-up and I have NEVER ONCE heard him complain.  Not when they took his prostate, or part of his colon, or his ureter, or his kidney or his bladder.  His mantra is, until they tell me there’s nothing that can be done, I’m fine.  I’ll do what I have to and move on.  So when I’m inclined to complain about my weird fake boobs, or my early menopause, I don’t.  I think of the family team captain, captain cancer, and I fall in and move on.  While my diagnoses did not come with a death sentence, they have built for me a life that frequently includes an uphill battle.  So I put on the armor, that’s what it’s there for.  It doesn’t mean that all of the other stuff, the pain and the fear, isn’t true, it’s just not useful in the fight ahead.

So just this once, I’m admitting it here, if only to prove to myself that I can.   Just this once, my weakness may in fact be my strength.  And here I am, fighting the fear, telling it like it is, and making the choice to leap.   

 

 

Saying goodbye to the woman who changed my life…

In Uncategorized on March 4, 2014 at 11:47 pm

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Virginia Scott was a force.  My first interaction with her was as an undergraduate student in her theater history class and frankly, she scared the crap out of most of her students.  But not me.   To me, she was brilliant and wry- a wellspring of fascinating ideas that set my imagination on fire.  She loved the subject of history and she taught the analysis of drama- dramaturgy- through a historical lens.  And man, did she not suffer fools.  During the second course I took with her that focused on her greatest passion, Moliere, she asked to see me during her office hours.  I was sure I was in trouble.  As someone who had always underachieved academically, this was my default response.  But instead, she said the thing that would change my life, “Amy, I think you may be a dramaturg.”  For the next few years, Virginia shepherded my learning, but for every year after that, she shaped my life.   I am, in fact, a dramaturg- and I might have never known that were it not for the formidable, indomitable Virginia Scott.  And I am only one of so, so many.  A good professor enriches young minds.  A great professor enriches their lives.  While I have thanked her many times over the years, I wanted one more opportunity to do so.  The world has lost a tremendous woman, mother, teacher and friend.   I love you and thank you, Virginia.

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