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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.

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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.

Back to the Drawing Boob…

In Uncategorized on January 17, 2014 at 10:49 am
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Post-surgery & back in the hospital July 2012

Tattoo ideas

Nothing like a bit of breast wordplay to start a long overdue post…

After a much needed year away from operating rooms, I have bitten the bullet and begun the process of ‘fixing’ my reconstruction.  It should be said that the problems are purely cosmetic.  According to my plastic surgeon, he had placed post-surgical expanders that were larger than the implants I ultimately agreed to, leaving too much space in the skin that remained.  It created what I began to call my ‘divet’- a strange impression  at the top of my right breast that for some reason bugged the holy living shit out of me.  So the solution is a process of fat grafting to fill the extra space.  Fat grafting, for those of you who don’t know, is a procedure that the surgeon described as causing minor discomfort for a day or two post-surgery.  This is NOT the case.  Fat grafting involves liposuction- take a little from one place and inject it into another, as it were.  Neither the ‘sucked out’, nor the ‘shot in’ were very happy post-surgery.  On the upside, it’s the first time I’ve  been grateful that I no longer have feeling in my breasts.  But the host site (and I confess, there are plenty to choose from if you’re fat collecting on me) feels akin to having gone 8 rounds with a boxer.  I am nine days post-surgery and I’m still too sore around my waist to put on a pair of jeans.  Heh heh, get it, pair of jeans…

ANYWAY.  Having discovered that these procedures are not of the wham bam variety, I am hemming and hawing about what to do next.  With grafting you have to do the procedure 3-4 times as fat dissolves initially.  It has to be built up gradually.  In speaking with my plastic surgeon, we  agreed that as I near the end of these surgeries that I will finally get the nipple reconstruction I have been putting off as well.  Too bad, I have been using my lack of nipples as an excuse not to date.  I guess I’ll have to find a better excuse.  Oh, what I mean is, I guess I’ll start dating…?  I will likely forgo the final step of having the pigment tattoos, I’m inclined toward more elaborate, decorative tattoos.  (the design of which is above)

Why have I decided to move forward with all of this?  I think mostly because I’d like to have some sense of closure on these proceedings.  I have done all that I can, at least surgically, to lower my chances of getting cancer, and maybe completing the process of reconstruction will allow me to close the door on this part of my life.  I think too, since I bothered to go ahead with the reconstruction, I should at least like/tolerate these foreign orbs that sit beneath my eye line.  I will always be disassociated from what has been put there in the place of my breasts, but it doesn’t mean we can’t peacefully co-exist.  (Stupid divet).

Here’s the thing that you need to know when considering  reconstruction after a bilateral mastectomy.  It may take more than three or four steps to get it right.  If you have opted not to do the nipple sparing approach, and you opt for implants versus the FLAP procedure, (see the December 2011 post for information on FLAP https://pairofgenes.com/2011/12/ ) you are looking at a minimum of four surgeries, and that’s assuming that everything has gone as planned, i.e. no cavernous divets.  (my new favorite oxymoron) The process of building something from nothing is miraculous, but it IS being built and in some cases will have to be rebuilt numerous times in order to make the ‘fake’ more ‘real’.  And I am not sure I can go another 24 rounds in the boxing ring.  I may choose to stop after the next procedure.  Then again, I have been ready to throw in the towel many times over the course of this fight and I have yet to do so.

For those of you who have been reading the blog for awhile, you’ll notice I’ve shaken things up, given the blog some reconstruction all its own.  I hope to begin sharing the series of photos that were taken before my surgery and over the course of my recovery.  They are, needless to say, incredibly personal, so I’m gathering courage and will begin to share them with each post.  The inclusion of photos is what brought me to a new look- I’m also hoping it’s a bit easier to read- but feedback is always appreciated.

Until the next round of surgery…

“Character consists of what you do on the third and fourth tries.”
― James A. Michener

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

A guest blog on #lullabiesformommy.

In Uncategorized on July 26, 2013 at 9:41 am

Photo on 2013-07-21 at 17.17

@pairofgenes: I guest blogged!

http://www.lullabiesformommy.com/2013/07/exmochallenge-guest-blog-featuring.html?m=1

The Things I Don’t Share

In Uncategorized on July 5, 2013 at 1:48 pm

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You would think writing about such personal things: Mastectomies, Hysterectomies, Multiple Sclerosis, to name a few, that I wouldn’t hesitate to continue my history of the epic over-share, but truth be told, surviving all of those things makes me look like I’m hot shit.  Like somehow I’ve cornered the market on survival and that makes me brave.  But here’s what I don’t tell you, because I’d rather you didn’t know how difficult all of this has been nor the toll it has taken on my psyche.

A few months ago I was asked to do some research for a play on which I was working. (still desperately avoiding ending a sentence in a preposition.)  There is a monologue that describes lying on the forest floor, wanting more than anything to get up and climb the trees to get to what he perceives must be golden eggs within a nest at the very top.  But the trees have smooth trunks with no knots so climbing is out of the question and there is nothing to do but lay on the floor of the forest and look up, longing for tree tops forever out of reach.  One of the actors had asked that I do some research on types of trees with trunks that can’t be climbed.  Again and again, I came across images that were from the perspective of the forest floor.  The height of the trees, the sliver of sky, the impenetrable nature of nature.   Completely losing myself in Strindberg’s metaphor- you know, like you do, I felt an ache that I work very hard to submerge.

It has been a few months and that play has come and gone and two more are running, and another is rehearsing and I seem to have remained on the forest floor.  I just celebrated being one year out from my surgery and while I am physically strong and back in order, emotionally I have changed.  Really changed.

I am disinclined from participating in my life.  There.  I said it.

My son and I receive invitations- a lot of invitations- and for his sake, I make a point to say yes.  And I’ve even tried to apply this when he’s with his dad and I’m flying solo.  I FORCE myself- and I am not exaggerating in regards to what kind of rally it takes to say yes and then, on top of that, to actually show up.  But each step of the enterprise is like fucking hell and all I want to do is put on yoga pants and watch re-runs of Bones and Castle.  I’ll admit, once I arrive somewhere, anywhere, I usually have a good time but I’m generally exhausted from the self-torture parade that has preceded showing up.

Now, I know you’re thinking, “well, she’s just depressed.  Maybe she needs meds, or a shrink, or both?”  And maybe that’s true.  But I’m on meds- lots of them- to treat mood instability that comes with both MS and menopause.  I’m also taking hormones, leading me to have to take blood thinners because hormones can cause blood clots and because I developed one after my surgery blah, blah, blah.  I am a walking pharmaceutical experiment complete with $1500.00 worth of co-pays every month.  So I don’t think meds are the answer.  And a shrink, well I’ll ask you to refer back to the amount of money I pay out for those meds so unless someone wants to trade me therapy for theater tickets, that’s not going to happen.

So instead, I read.  And read and read and read.  I read books about how shit falls apart, about how to put shit back together, about how little shit matters, about shit being nothing more than our perception of said shit.  Nothing helps.  It eases the panic for the time that I am reading, and then it floods back only now I’m more keenly aware of how far down I’ve fallen and how much energy it takes to get back up.

And I cry.  And cry, and cry and cry.  I admitted to my co-workers this week that I don’t put on my make-up until I get to the office because I usually cry on my way to work so what would be the point.  And not because I’m going to work.  Even in the midst of all of this, it’s never hard to rally to go to the office and get immersed in something other than my own crap.  I know this job, I’m comfortable knowing that I can do it and do it well.

Now, I am not keen on blogs that are sob stories about rich people problems.  And while I’m not a rich person, I am the first to recognize the first world nature of my complaints.  This is part of THIS blog because this is the person I have become after undergoing all of these surgeries.  I used to want to be in the world.  It didn’t bother me, going to parties on my own, going anywhere on my own for that matter.  But I have changed.  I am far more emotional, erratic, angry.  And I expend almost all of my extra energy (of which there is very little) trying to mask this truth from my son because I am desperate to be a person who lives in the world, for his sake and for my own.

Now, here’s the other awful truth that my mom (damn her ability to see and tell it like it is) pointed out to me yesterday.  I’m pissed off because I’m fat.  And please don’t say, “don’t use that word”- it’s my fucking figure, I’ll refer to it as I please.  And this has very little to do with the surgeries or the MS.  Because I have always struggled with my weight, I was warned, by more than one doctor, that losing weight after menopause was going to be far more difficult.  While I’ll admit that the majority of the reason I haven’t lost weight is because I eat anything that isn’t nailed down, I have discovered, in all truth, that even with an appetite that is markedly decreased based on physiological changes, I gain weight with such speed that my snail pace metabolism is simply left in the dust.  And it sucks.  Because it’s true, I’m inclined to hide when my weight goes up, which brings me back to yoga pants and Bones repeats.

So my theory is, if I say this, or rather write it, it becomes an undeniable fact with which I will have to deal.  And I know being sad isn’t brave or resilient, but I can’t get up off the forest floor without first admitting I’m stuck down here.  But I am looking up, so that’s something.

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.

Owning my own ‘normal’

In Uncategorized on February 10, 2013 at 6:43 pm

It turns out there isn’t anything defective about my implants.  I had meant to do an update and as usual, the month got away from me.  But it’s actually a good thing because I have had some time to ruminate on my reaction and my relationship to these strange orbs that are sitting front and center.  But first, the information from the doctor.

The implant hadn’t leaked, or slipped out of its casing.  It turns out that because the leftover skin being used for the reconstruction is so paper thin, it is inevitable that I will feel the lining and at times, the implant itself.  In an effort to examine how ‘normal’ my new breasts feel I solicited the help of two friends in the office and we ran comparisons.  Ah, the theater.  Turns out, real breasts have just as many anomalies as the fake ones. There isn’t really any such thing as a perfect pair of breasts, so there you are.  No offense to the ladies who offerred up their boobs for my experiment- both have lovely racks.   The plastic surgeon reassured me that as the implants settle in, they begin to feel more ‘normal’.  He also said that if I still wasn’t happy in a few months time, he is happy to do a trade out surgery for new implants as one of my breasts is about 1/2 cup size smaller than its counterpart.  But based on the fact that I am not a model or someone who requires perfection in this area, I may leave well enough alone.  At the very least, we have decided to hold off on the completion of reconstruction for about six months and I will reassess at that time.

Someone pointed out to me that all of the solutions being offerred to me kind of suck.  Going back in sounds elaborate and leaving them as is means settling with a less than ideal outcome.  But, as always, I pointed out that a perfect pair was not the point of the exercise.  And in terms of that- the solutions offerred have delivered ten fold.  This is just a messy icing job on the cake, as it were.

All of this blew open the conversation again about feeling disassociated with the breast reconstruction.  My chest has become something to hide or ignore or live with.  Maybe all of the above.  I did some research on what the nipple construction and tattooing will look like and somehow it’s all just a bit fakey-fakey for me.  I know that a lot of this is psychological- no one knows that better than me- but I want to find a way to reconcile with what I’m left with.  In speaking to an old friend who is about to undergo a double mastectomy and reconstruction I expressed my lack of enthusiasm for the next stage of reconstruction and she suggested that I forget it and get tattoos I love, instead.  I  have known for some time that I was going to get a quote tattooed on my back, but this is something altogether different.  And I thought, maybe this is the key.  Maybe for me the key is not in trying to make my breasts look ‘normal’ but in accepting that they are something different.  They need not conform to what ‘normal’ breasts look like because god knows, there is nothing normal about me.  Maybe my body needs to become a canvas on which I tell my story to myself- a story I write, that belongs to me.  In recreating my ‘normal’ body, maybe I can reconcile with the idea that my normal is not normal but that doesn’t mean that it can’t be beautiful and that it can’t belong to me.  My relationship with my body has always been tenuous at best, sometimes it’s downright hateful.  Imagine though, the ability to make profound decisions about how we look and in doing so, making decisions about how we feel.  That would really be something.

So for the next six months I am going to do a lot of research.   I am going to find every symbol that stands for perseverance.  I will figure out the meaning of every flower, every plant, every insect, every thing that stands to serve as art on the body on which I now write.  In the end, I may opt for the standard procedure.  But it will be a decision as opposed to a resignation and that is the key to reconciling what was with what is.

In the mean time, me and my BRCA twins are healthy and happy and living our lives.  I hope that this also become part of my ‘normal’.

Written on the Body

But I ordered a matching pair…

In Uncategorized on January 11, 2013 at 12:01 am

Ah, the trials and tribulations of fake boobs.  But we’ll get to that in a moment.  I want to give a quick update on my sis who had to proceed with her final surgery to combat our lovely genetic makeup.  She is doing very well, recovering nicely and should be back up and running by Monday.  While it’s a huge relief for her, and well, everyone, to have this last surgery complete, she too is dealing with hormonal surges beyond the pale and because of her predilection for cancer her oncologists are resisting giving her any hormone replacement.  She is where I was about two months ago and it’s rough.  There are many things that are easily dismissed until you move through them yourself.  Parents who complain about lack of sleep with a baby, migraine headaches that cripple you from pain, or hormones that highjack your personality and replace it with Lewis Black- a screaming, aggressive ball of neuroses- only not funny.  Seriously unfunny. We get that menopause is inevitable and temporary.  But in this instance, and I’m speaking for my sister too which may be out of turn, it’s premature and yet another glaring reminder of the fucking genes that lead to the fucking cancer- you know the drill.

But now we’ve both been relieved of our most dangerous targets for cancer.  We won’t prophylactically remove any of the other targets as that would leave us with no colon, pancreas or skin and that wouldn’t be terribly attractive.  Hopefully she will sail headlong into her five year cancer free mark with no impediments- fingers crossed.

And those pesky hormones.  I actually had a couple of glaring signs that I have leveled out on that front.  Here’s the test that proved this assertion.  My right boob has gone rogue.  It doesn’t look anything like its counterpart.  It is misshapen and I can feel a crinkly sensation when I touch it.  I saw you all cringe at that.  Clearly, my implant is faulty in some way and I have a call in to my plastic surgeon to fix the flat, although it’s still not flat- it’s just weird and funny.  But there it is- I have completely found the humor in this latest debacle.  Today as my friend, and co-worker Shannon photographed my faulty boob- I was asked to send pictures to the surgeon- I remarked that most people send photos like this for kicks, not for medical research, and it’s a good thing I’m never getting into politics with these photos in the ether.  And the pictures aren’t hot.  They are anti-hot, they are the antarctica of nude shots.

I don’t know how the surgeon is going to fix it, but I know it’ll get fixed.  (positive attitude-check).  If I have to trade in this implant for another model I may opt for saline, I have been second guessing myself on that choice based on a connection between silicone and fibromyalgia.  While MS and fibromyalgia are very different illnesses, they share many symptoms so better safe than sorry. (silver lining finder-check).   I am just concerned that another trade out surgery will interfere with a clinical trial I have just started to clock the effect of exercise in people with MS.  (proactive choice to get int the game-check.)  Ultimately, I know that this is just a bump in the road- no pun intended- it hasn’t even been a year since my initial surgery and complications were inevitable with this many intricate procedures.  (pragmatism takes it’s proper place over hysteria-check).

So while I wait for word on how to fix this latest setback, I’m calm in the knowledge that it will in fact get fixed and that is the best barometer of all that I’m more myself.  Pissy at times, conflicted at times, disappointed even- but at the end of the day simply doing what comes next and laughing about the slight misfortunes that make for great stories.