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This deserves a post all by itself.

August 12, 2009

On a secret mission, I have a beef with someone. 

Here it goes.

Bilateral Mastectomy is not cosmetic.  It is not fun.  It hurts a whole lot, until you heal that is, and then it is just numb.  I mean physically numb.  You have no feeling where your breasts once were.  Sure, you can have reconstruction.  But the last time I checked, you can’t FEEL silicone or saline, or whatever you choose.  Having a bilateral mastectomy means that they REMOVE your breasts and nipples, not enhance your breasts.  They cut them off and leave you with scars that mean more than your breasts ever did. 

Being a Previvor, means that you are trying to avoid the cancer that has plagued the generations before you.  It means that you will willingly accept help with your children, life, and self for a SHORT period, in order to heal.  It means that you don’t want to get cancer that is so savage, that you are willing to butcher your body in order to defeat it, head on.

It means that you are strong, though terrified.  It means that you are brave, despite pain.  It means that you can overcome an 87% chance of cancer.  It means that you are more in touch with who you are as a person, than who you are as a body.  It means that you may not like the result aesthetically, but you like to know that you did everything within your power to live a long life and not orphan your children.

Facing a salpingo-oophorectomy is not exactly a walk in the park either.  It is difficult to be young and vibrant, while at the same time dealing with menopause, and small children.  But you know what the trade off is?  The feeling that you did all you could to rip out the organs that develop cancer so aggressive, that it is not usually detected until it has spread to your other organs.

Being BRCA positive is a blessing and a curse.  You have to live with the knowledge that you might go down the same path your aunts, mom and cousins did.  It is also the blessing of knowledge!  You can do everything medically proven to better your odds!  Not CHOOSE to have a “cosmetic procedure”.  The plastic surgeon, that tries to give you back resemblance of breasts, is called a PLASTIC and RECONSTRUCTIVE surgeon.  Not a cosmetic surgeon.

The saddest part about this.  The *person* who this is intended for, will never understand.  Because you have to have a heart and soul to feel someone else’s torment and pain.  When you are too diluted to see beyond your own web of lies, you will never understand that one day, your children might have to face these decisions, too. 

Then will it be “Well, you still have a 13% chance of not getting cancer?” OR “This is a cosmetic procedure?” OR “How will surgery even benefit me?”.

I didn’t think so.

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6 Comments leave one →
  1. August 12, 2009 8:34 pm

    Hi there, I found this post through FORCE. Thank you for your anger on behalf of us all. I also blog about the BRCA bitch. Please visit my blog if you are in need of more venting as I have enough spleen to go around.

    Best.

    Dee

  2. megilly permalink
    August 13, 2009 9:40 pm

    “It means that you may not like the result aesthetically, but you like to know that you did everything within your power to live a long life and not orphan your children.”

    Thank you for this strong statement. It has been five years since my operation but I still need to lean my head on husband’s shoulder and shed a few tears in the kitchen once in awhile, and reading this post helps to let it all make sense.

    A PBM changes you forever and it is helpful to see the reasons why I did in it bold colours.

  3. September 1, 2009 2:50 pm

    I just found your blog through FORCE, too, and will add it to my BRCA blog roll (will you consider adding mine, as well?). But mostly what I want to say is: Amen, sister. I had someone look at me and say, “No fair, you get a free boob job!” and my jaw nearly hit the ground. People can be so insensitive. NOTHING about this is free.

    Keep fighting the good fight.

    XOXO,
    Steph H
    goodbyetoboobs.blogspot.com

  4. sldearing permalink
    September 3, 2009 11:26 am

    Unbelievable, isn’t it? It does become frustrating to try and explain why this is so necessary. I just wish that there was more information, studies, publicity behind BRCA, and for that matter all genetic diseases. With the discovery of BRCA, we are obviously in the infancy of understanding, but it doesn’t mean that we should accept our fate. I hope that for the next generations, there is an alternative besides mastectomy. Until then…let’s keep blogging on the journey! And of course I’ll add you to the *laundrymat*….gotta keep it open, ya know!!

  5. October 4, 2009 1:11 pm

    I think your post speaks very well for all of us, thank you for putting it so eloquently.

    I have a friend, Karen, she has the BRCA mutation as well. She put it in a way that is hard to argue with… She said something to the effect of: “If someone told you that you had an 87% chance of winning the lottery you’d damned sure buy a ticket, wouldn’t you?” – I can’t think of anything shorter or better than that to say to the masses of insensitives that have no idea what we go through.

    I’m adding you to my blogroll too. 🙂

  6. July 23, 2012 2:26 pm

    If someone tries to comfort me with “free tummy tuck” (I’ve chosen DIEP reconstruction) again I am going to scream. Although it’s far from perfect, I do like MY body. I am not doing this for cosmetic reasons at all. I am doing this for my children and myself so that we don’t succumb to the same fate that I did (as a young adult losing my mother) and my mother did and her mother did. “Free” boob job and tummy tuck are not perks right now. I agree with Steph, there is nothing free about it.
    Thanks again for your blog posts.

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