pairofgenes

Posts Tagged ‘BRCA’

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.

The Space Between Chaos and Shape

In Uncategorized on September 8, 2013 at 4:01 pm

 

A 'before' picture

A ‘before’ picture

To begin, I got up off of the forest floor.  The first step in doing that was most likely writing about having been down there.  The reaction I got from so many of you was overwhelming- it buoyed me back into the land of the living.  Not only the love and support, but the candid honesty from so many about your inability to move forward, to make it better, to make it stop.  Thank you for giving me love and empathy when it was so sorely needed.

The second step was starting therapy.  I was operating under the assumption that I was depressed based on circumstance.  My sister experienced the same thing while going through her treatments for breast cancer when her doctors said that based on what she was going through, it would be weird if she wasn’t depressed.  But I think that response is far too cavalier.  Just because circumstance makes us entitled to our depression doesn’t mean we want to live in it indefinitely.  So while my financial situation made it impossible, the ‘family foundation’ (a term I use metaphorically, hence the quotes) offered to help me seek some help.

I treated finding a shrink much like online dating.  I read a bunch of profiles, picked a handful of people and set up ‘first dates’.  It’s an eye-opening experience.   After every meeting I was struck with the aspects of my life on which I chose to focus.  The surgeries and illness were introduced much like exposition.  They only served as set up.  It turns out I am seriously pissed off about a bunch of shit.  And having learned in my 20’s that no one else is to blame for the garbage you carry with you (sorry about that boyfriend from my 20’s) I need to lighten the load and learn to be content with what is.

I finally settled on a woman (I was sure I’d choose a male therapist) who treated me with gentle kindness (I was sure I wanted a drill sergeant to kick my ass)- much like my choice in who I dated (when I dated) the right person for me was not who I thought I was looking for and is, in fact, exactly right for me.  The thing she said that convinced me she could help was that I have a lot to mourn.  There are things I have lost, physical and emotional and I need to feel sad for those losses before I can move on.  So I’m going to sit with her and see if I can’t sort out some of this shit.  If it gets better, it will make for far less juicy reading in regards to the blog, but I can live with that.

But I would be remiss if I gave all the credit to starting therapy.  After the post about the forest floor I stopped eating flour and sugar and while my weight hasn’t budged all that much, my self-hatred has started to leave the building.  I don’t know why it is, what it is in those foods, but along with making me fat they make me sad, mean, impatient, exhausted and intolerant.  Have you ever tried that personality combination with a nine year old?  The last week or so I have let a little bit of sugar in for a visit.  There just isn’t room for it anymore, so the all or nothing button has to be reset.  I believe that we all have a certain reservoir within us and there’s a lot of space to fill.  But once it’s at capacity, there’s no room for anything else- bad or good.  Food has taken up too much space in mine.  It was intentional, because leaving it empty was too painful.  But now I want that space back.

During Rosh Hashanah there’s a ritual known as Taschlit.  You gather stones that represent the sorrows, disappointments, regrets of the year behind you.  You say a prayer for those things you have carried and then cast the stones into the ocean, allowing them to be washed away with the tide.  It’s a ritual I love and Santiago and I couldn’t go today so this post is my ocean and this despair that I have shared is the stone I am casting.  It’s time to make room.

In the space between chaos and shape there was another chance.  —Jeanette Winterson

Look, My Genes are Famous!

In Uncategorized on May 29, 2013 at 3:12 pm

“In a battle all you need to make you fight is a little hot blood and the knowledge that it’s more dangerous to lose than to win.” -GB Shaw

So I have been quiet for a couple of months.  I had hit a point where things were in a holding pattern and although my feelings about each stage continued to morph and change, without concrete medical info. to deliver, I didn’t feel I had anything of intrinsic value to add to the conversation.  But then Angelina Jolie got a preemptive double mastectomy.

I have waited awhile to respond to this news because I wanted to see how the world reacted and make that part of this piece.  And much like my own story, and the story of thousands who have made this choice, the opinions ran the gamut.  People immediately wrote op-ed pieces about women making poor choices to mutilate themselves solely based on fear.  They criticized the medical establishment for operating based on genetic probability.  Better that we should drop dead in our forties then take matters into our own hands, right?  And because it was Jolie, a woman that people love to hate, there was criticism that she was using this as a publicity ploy to make herself more likable to the public.

Now, I’m a fan of hers.  I don’t mean that I rush out to see her movies, but I respect the fact that she has used her fame to aid in humanitarian efforts, she is bold, and outspoken and doesn’t seem to suffer fools gladly- all good stuff in my book.  But let’s say for a minute that I didn’t like her.  That I blamed her for Brad and Jennifer’s break-up, that I thought she made shitty movies, whatever the complaint is- pick one.  Even then, I would never criticize her choice to protect her health so she can stick around and raise her not insubstantial brood of children.

And to the people who think they know better, who direct scorn towards her for what they perceive as setting a trend of self-mutilation, who suggest that women are too afraid of cancer and are therefore acting irresponsibly, well to them I say, Fuck You.

The only ‘trend’ she stands to set is that of genetic testing and proactive decisions in regards to women’s health.  Well, we wouldn’t want that, would we.  I mean women might actually make informed decisions about their own bodies- horror of all horrors!

The night this news hit I received posts, messages, texts, phone calls, you name it, checking in to see if I had heard that someone famous was talking about the BRCA gene.  I have spent the last year explaining what it meant to people and oftentimes beginning in an apologetic tone knowing that judgement would follow my description of what I had undergone to save my own life.  And then I wrote about it, and sought out other people who had dealt with this, and finally, just recently, have started down a path where it is no longer at the center of my life.  But for anyone to ever suggest that a double mastectomy and full hysterectomy is something anyone would do for the sake of medical trends is not only ignorant, but inarguably proves that women’s health remains an issue wherein far too many people insert their big fat noses.  Stand in front of me, with either BRCA1 or BRCA2 or in my case, all of the above, and tell me how ‘lightly’ you take the 97% chance of getting cancer.  Of course if the Jolie dissenters took the time to stand in her shoes they wouldn’t respond in a tone that reeks of holier than thou.

She could have hidden her decision and none of us would have ever been the wiser.  She had managed to do so for many months prior to the announcement.  She chose to discuss it because it is a threat to women’s health and as I said in my very first post almost two years ago, knowledge is power.  Knowing what you are up against is the only way to fight it.  An invisible enemy will defeat your ass every time.  She didn’t come forward so people would tell her she was brave and she did right by her children but for the record, she is and she did.

In two weeks I am taking my son to Alaska to celebrate the anniversary of what I underwent so I can live to see his first crush, his awkward adolescence, his graduations, the amazing man he will surely become.  Even with all of the complications and the continuing saga of reconstruction, I have never doubted or second guessed the decision I made to significantly lower my chances of dying of cancer.  Call it what you want, that’s my truth and hence my choice.  And I am grateful to Angelina Jolie because while I didn’t need her to validate that choice, she will undoubtedly help me defend it.