Genes, Boobies and Other Accessories

I started writing a post yesterday that was full of funny things regarding my birthday (today) and my latest fill. It included celebrities with whom I share a birthday and funny thoughts around my current situation. I even mentioned my upcoming physical therapy and a shout out to my friend and fellow blogger, Sarah. All of this came to a halt yesterday at 521 pm.

When I got home yesterday I checked my mail and opened a letter from the genetics center that did my original testing many years ago. The letter asked that I contact them to update my contact information. Apparently they didn’t have my current Ohio information. I called and gave my new address and phone number. The lady said there was an update to my file and asked if I had time to speak to the doctor. Of course I was excited to talk to her because of the new found sense of pride I’ve discovered surrounding my mastectomies. The news the doctor had to share with me was something I could have never expected. In fact, I’d say it’s the worst news I’ve ever heard.

This summer they completed additional research on my gene mutation and found that my test results are actually benign.

Let that soak in.

Basically, for 6 yrs I’ve been told I was in fact BRCA2 positive. I had the documentation and everything. I made the decision this year to end my worry and eliminate my risk by having a bilateral mastectomy…and I didn’t have to.

I now feel like my entire foundation has been shaken to pieces. I’m exceptionally confused, sad, angry… Honestly, I don’t know what else to say right now. I want to continue this blog. I am still going thru reconstruction- there’s no backing out now. I am trying to find some peace and understanding but right now I just can’t. I’m angry. So very angry.

I have no real insight or ‘lesson learned’ to share. I have no positive spin. I have no answers. I don’t know what else to write right now but felt that it was very important for me to share my recent news. I never ever want to appear to be a fraud but I can’t keep writing under the premise of being BRCA2 positive.

My goal for this blog was to be vulnerable and transparent. I still have so much to endure before the end of my reconstruction but I need some time to process this new turn of events, and I need time to reconcile what has happened. I’ve gone from feeling empowered and hero-like, to defeated, deceived, and helpless.

Please forgive me for not being ready to discuss this in detail. I’m going to take some time to process it. I don’t know when I will continue my weekly blog posts, but I promise I will resume them at some point. Please forgive me for not being very responsive if you reach out to me right now. I promise that I will survive this latest news and be back to sharing my experiences and insight as soon as I’m ready. I’m searching for clarity and understanding. I’m just too broken right now to say much else. What was seemingly incomprehensible to begin with has now gotten worse. As most of you now know, I’m a fighter and am resilient. I’ll bounce back with a renewed sense of self and resolve…but I need some time.

For those of you going through reconstruction right now…solidarity.

Comments on: "Very Difficult Post But Please Read" (21)

  1. It’s hard to know what to say. I would be so angry as well. But, having read your writing for a while now I have a feeling you will find a way to spin this around. You are tough – to the core. On a complete and unrelated aside, if it took them 6 years to tell you they screwed up the test, I would have it repeated somewhere else, just to be sure. Thinking of you as you endure this difficult revelation. (I’ll save my “positive” comments unti you’ve had time time to process!)

    • hopeforheather said:

      I agree! Can you get a 2nd opinion to make sure in fact you aren’t positive?

    • Thank you. I’m feeling better today. I’m going to post an update soon so that we can all discuss it more. I really appreciate your support and encouragement.

  2. Lee Asbell said:

    Just thinking of you. I hope you will share with us, good or bad, as you deal with this. Take care.

  3. My heart dropped all the way to my feet when I read this. I am so sorry.

  4. hopeforheather said:

    That mine did too comment was a reply to mainley hopeful.

    I am speechless. No words. We are here. And aren’t going anywhere. I have tons of questions and I’m sure you have a zillion more. Thinking of you.

  5. Praying for you to find your way back. I know you will come out of this stronger and better. But it just sucks, plain and simple. Send hugs your way.

  6. jennifer said:

    I am speechless.. I am still waiting for my first test results because there was a problem with the first tube and they didn’t have enough to do test. my results should have been done today on the second test; my doctor is suppose to call me in the morning but reading this slammed on my brakes and breaks my heart for you. I had decided to go ahead no matter the results because of constant cysts and constant ultrasounds and etc. but then I read your blog and wondered if I was as strong as you and could face the long ordeal. I thought one surgery and new perky boobs; you taught me different. now to think I agreed to pay thousands of dollars for a test to reasure I need to do it and reading this today as shook me. I wish I could hug you and make whoever did your test pay.. I know you will still fight and win because that is who you are. prayers and thinking of you. if I can do anything besides say thank you for sharing please let me know.. and next time you are in town–RWS; you and I will celebrate your birthday!

    • Thank you. I’m about to post an update, but I’m doing much better today. It’s potentially not as bad as it originally sounded to me…or at least I’m feeling better about it in general. Thank you for your kind words. Let’s definitely celebrate when I’m back in town!

  7. hopeforheather said:

    I just wanted you to know I’ve been thinking about you all day.

  8. decisionsformyfamily said:

    There is nothing that can be said about this. I hope you are able to put it behind you and move forward at peace with the situation. I am sure you are angry, confused and sad but the past can not be changed as much as we wish we could. I wish you the best and have you in my thoughts!

  9. Karen Scott said:

    Oh, Mandy. Thinking of you…

  10. Oh my gosh – I am so sorry!!! I can’t believe this!!! I am such a believer that everything happens for a reason, but I just can’t understand this… why you had to be put through all this for so long, and to find out now, at all times… my heart goes out to you…

  11. My favorite response is the one that says you’ll find a way to put a positive spin on this. That’s what resilient people do. I’m a bit late on this response, but I really hope you’ve found a perspective that is comforting.

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