pairofgenes

The Frankenstein Factor- as promised…

In Uncategorized on November 27, 2011 at 8:03 am

So the other night my sister and I went to see Breaking Dawn at 12:15am- opening night.  That’s right, we are 40 and 44 respectively, and we are not immune to the powers of Edward Cullen- he’s a hot, basically underage vampire who sulks.  What could be better?  But I digress- we can talk Edward later- we were there with a couple of friends, one of whom was making inquiries about the BRCA gene and what the positive test meant in my case, not having been diagnosed with cancer.  I explained that based on the fact that I had tested positive for both BRCA genes, just like my Cullen loving sister, and because I was already battling an auto-immune disease, and my family history, and an immediate sibling was battling cancer- that all of these factors lead the geneticist and my other doctors, to strongly recommend a prophylactic double mastectomy and hysterectomy.  This sent him into a half-hour tirade about self-mutilation, and why would I opt to butcher myself when other treatments are available, and don’t I know what I’ll be doing to my body and how I will suffer because of it- all of this, mind you, while my recently operated on sister stood by and tried to remind him, albeit gently, that she was standing there with no boobs- and HELLO!  IS THIS ON?.

Now, here’s the thing.  I know that there are plenty of people who are going to have this kind of reaction- I understand that to someone who hasn’t faced down this difficult decision, or studied up on what this gene means, that this seems like an extreme way to handle this problem.  But, in fact, it is not.  They are just boobs, people.  Oh, and ovaries, and well, there’s that uterus in there too- and well shit, I guess it’s a lot of stuff that I have been rather attached to for some time.  Okay- so what if it is mutilation?  What then?

The way that I see it, I have two choices.  I either do this now, under very controlled conditions with a known outcome, and I decrease my chances of developing cancer by a significant amount OR  I wait until cancer develops- and there is an 87% chance that these previously referred to boobs will grow cancer cells, and then have the very same procedure under much less controlled circumstances followed by chemotherapy and radiation.  Now, there will be some out there who will ask- “but what about that 13% chance you won’t get it”.  And to them I say I have had frighteningly bad results in the health department- I am more likely to bank on winning the fucking lottery than I am to bet on that 13% chance that I won’t get cancer.  Further- these two surgeries only lower my risk of two of the five cancers that the BRCA gene leaves me vulnerable to- I’m not working with thrilling odds here.

So- mutilation it is.  And here’s the thing.  I have never been that attached to my breasts- I haven’t ever seen them as an asset, as it were, or a part of me that is particularly attractive.  They’re big- and some guys dig that.  One of their fans proposed a pre-surgery play-date with them, a last hurrah as it were.  The term play-date made me giggle.  But at this point in my life- they just really get in the way when trying to do downward facing dog.  I end up in a half-assed downward dog with a mouth full of mammary.  I know, charming visual.  But whether I have liked them or not- they are mine-and I don’t delight in the idea of having pieces of me taken.  I don’t know what will happen to my body when I am thrust into menopause at the ripe old age of 40.  These are not choices I make lightly.  On the contrary- with the exception of having a child, these are the most profound choices I have ever made.

There is one upside to never having been a great beauty.  I am not going from someone who has always relied on my looks to get by to someone who needs to work with other attributes.  I am cute- that’s my looks “status”. Sometimes I’m cuter than other times.  I have a tendency to eat too much ice cream and get pretty chunky- I’m not as cute then, but I ALWAYS have a good personality.  No seriously, I do.  Don’t sulky vampires go for the girls with good personalities?  In all seriousness though, I haven’t ever placed too much value on my attractiveness- I have understood that people either want some of this, or they don’t.  Sometimes I’m cool with that, sometimes it really pisses me off.  But here’s the problem- I am not comfortable with fake stuff.  Boobs that aren’t mine seem odd to me.  I wholly support other people doing whatever they please to make themselves feel good- but this isn’t that.  This is just a matter of staying healthy, and well, alive.

Whether the scars are visible or unseen due to surgery- the feeling will be the same.  I will know, as my sister does, that part of who I have always been is going and being replaced by something new, or simply replaced by an absence of- a space in me, both inside and out, that I am not as whole as I once was and that just maybe, I am not the woman who I have always been.  Now, there will be those who will jump up at this point and say, “no! of course you are- it’s about what’s on the inside.”  And maybe that’s true to some extent, but it doesn’t wash away what is true for me.  It doesn’t wash away that these genes are causing irreparable damage to me and my sister and although we might be able to rebuild (it sounds like we’ll be bionic women, which would be SO cool) we will never be able to be whole as we were.  Maybe wholeness will present itself in another way.  Maybe these spaces in us that will exist will be filled with something more profound like a greater appreciation for life, or a larger sense of empathy, or a greater focus on taking care of what remains.  We’ll have to wait and see.

But I would ask those who judge the choice to have these surgeries to keep in mind that no woman- in fact no person- willingly gives up body parts just for the hell of it- particularly parts that have defined our gender in some way.  As confident as I am that all will be okay in the end, it would be disingenuous if I didn’t admit that I am afraid of being unattractive and in that state, unwilling to leave myself open to that elusive soul mate who is wandering the world in search of me.  (that’s not overly romantic and unrealistic at all) Maybe he’s just really into women with little to no boobs- and this is the perfect opportunity for him to find me!  Here’s hoping that my Edward likes ’em flat and saucy.

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  1. Amy, I must admit every time I read your blog it makes me cry. I do have to disagree with one part. You, and Missy have always been, and always will be, my absolutely beautiful cousins, boobs or not. I love you both dearly, and miss you all the time.

    • Jen-
      I hope that it makes you laugh as much as cry! Just know that Missie is doing great- she’s going to be okay and next year at this time it will just be another thing we had to live through. I love you!

      • I’m looking forward to next year! I’m going to visit soon! I don’t see you guys enough. Things like this remind us to spend more time with the people we love. I love you. Yes, I laugh too!

  2. Good post, except all the parts about the scrawny little vampire.

    I love you whether you got two scoops, double dips, or whatever- You are a beautiful lady.

  3. Amy
    I saw that you posted a blog, and decided to have a read. I’m a blogger myself (well I was quite regularly for a few years, took a break and have started up again) and was curious to see what you have been writing about.
    I will admit that I was ignorant about BRCA, I had to look it up.
    Reading your blog was….I suppose quite sad and surprising because I know you, but I didn’t know this part of your life, not that I had any prior reason to know.
    Your writing is excellent. It is a very TRUE account of how people react to life. There’s a lot of soul, humor, confusion and anxiety in it, and I really appreciate the candor of it all.

    On a side note, cancer seems to have become a more prevalent part of my life, it seems more and more people I know have either had it, have it, or more importantly, are defeating it.

    I wish you a lot of positive energy on these huge life choices you are being forced to make.
    And if it makes a difference, I’ll be reading everything you want to share.

    Best
    Usman
    p.s Twilight huh? Whaaaaat?

    • Thanks Usman- I think I’m in the same boat- with so many people I know and love coming up against this stuff, it seemed a good way to get this info. out there. And I love that you’ll be reading this- it means a lot. And Twilight- well- it can’t all be Chad Deity and Equivocation. A girl needs a good dose of trashy every so often.
      Best,
      Amy

  4. Amy,
    There are people that you want to work for and those you have to work with. You are someone I am blessed to work with that I admire and respect. Thank you for sharing your journey and for letting us enjoy your wonderful writing.
    Much love,
    Karen

  5. Amy,
    First of all: Team Jacob all the way. Second of all, really? Judgment? Is that what you and Missie need right now? I always thought you would make a great lawyer, and now you have more than proved it. The way you explain your decision makes perfect sense. And even if it didn’t–it’s your freakin’ decision, and whatever people might opine, the fact is that they don’t have to go through the stress of making such a decision. Thirdly, you are a hot babe so I don’t totally agree with your ‘never having been a great beauty’. I will, however, concede that you haven’t relied on your baberahamlincolnness to get you through tough times nor for that matter to be a magnet for incredibly wonderful people (tip of the hat). Flat and Saucy. Is that the new eggplant parmagianne dish that Pizza Hut has been advertising? I realize that no woman in her right mind would voluntarily have a body part removed. UNLESS of course it decrease her chances of premature death significantly. Also, I was hoping you could tell me how much does it decrease the chance you will get cancer to have the surgeries? And on the note of having body parts voluntarily removed, I would be a lying dog if I said that I haven’t had fantasies of getting my nose broken, and having it reconstructed into a cute Irish one. But of course I am talking apples and oranges. Or more specifically mastectomy/hysterectomy and rhinoplasty. Anyway, Ame, I am sorry to disappoint, but it would appear that Edward Cullen likes not-so-bright-super-oddly-affected 20-something year-olds. Enough hyphens for ya?
    Love, Rach

    • Rach-
      First of all, you are freakin funny as shit and I love you. Second of all- Team Jacob? Really? Third of all- are we seriously 40 and fighting over Team Edward and Team Jacob? Lastly- I would kill you if you changed that gorgeous Solomon nose- unless of course you wanted to- in which case i would support you because I’m not a crazy person 🙂 Oh- and in terms of boobs- I’ve always really liked yours- send me a pic??? hee hee- I knew I’d find a way to get naked pics out of this whole thing!
      xoxo,
      TL

  6. That depends: My 25 year-old rack, or my 40 year-old-post-nursing-peds-with-wet-sand-in-them-tatas? Eh, who am I kidding–I’d give you any pics you wanted. xoxo

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