The Long Goodbye – My BRCA Journey

Since the day I received the news I was BRCA2 positive I’ve run the gamut of emotions. I mean, I know that’s not an earth shattering declaration, I was told my lifetime risk of breast cancer is extremely high, along with a higher risk of other cancers including ovarian. So, yes, I’ve got feelings about it. A lot of feelings and not all of them noble and empowered.

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I can’t lie, I’ve never been big on going to the doctor, but in the last 7+ months I’ve been to the doctor more times than in my whole life combined. Physicals, blood tests, mammograms, MRIs, invasive (excruciating!) vaginal ultrasounds and consultation after consultation. I’ve spoken to a genetic counselor, an oncologist, a gynecologic oncologist and a breast surgeon. I’ve heard about my risk of cancer, I’ve learned about mastectomies and hysterectomies. I’ve also googled every medical term I hear. I’ve looked at before and after photos of mastectomies. I’ve followed women on Instagram going through the surgeries now and watched their process and recovery. During it all I’ve watched my mother battle and go into remission from ovarian cancer.

Having this mutant BRCA gene is a head trip above anything else, at least for me. I spend my days thinking about cancer, I watch my mother battle cancer, I sit in waiting rooms with people battling cancer – I don’t have cancer. I feel guilty about my self-pity because – I. Don’t. Have. Cancer. I should be thankful every second that science has allowed me to take steps to prevent cancer and in many ways I am.

I must also admit I’ve got some self pity. I want to go back to life before cancer seeped in. Before my mom got cancer. Before I laid awake nightly wondering if cancer was growing in my breasts or ovaries right now. Did the tests miss it? Am I taking too long to get the prophylactic bilateral mastectomy and hysterectomy? Am I giving cancer time to grow as I say goodbye to my breasts and ovaries? My sister (who is on the same BRCA journey as me) and I had a bit of a laugh yesterday realizing we were running out of tests and doctor appointments, the time for surgery is rapidly upon us. No more stalling. We laughed because that’s what we do. I hate she’s going through this too, but we lean on each other, and that’s invaluable. 

I sat in the treatment room yesterday with the breast surgeon as he told me how he’d lower my cancer risk from 87% to something like 5% I just have to get rid of these dangerous breasts and replace them with some safer ones. He kinda bragged about his success rate and how good he was – I liked that about him. Although sometimes when he was talking I heard the teacher on Charlie Brown Wa Wa Wa Wa Wa. I tried to listen to every word, but my brain wanted to go somewhere else. I tried to absorb as much as possible. I left and walked through the waiting room full of women wearing bright scarves waiting for their chemo appointments.

I don’t have cancer. I’m lucky. This isn’t where I want to be with my life, but here I am. I want to be brave like my mom. I want to be empowered like the previvors on Instagram. Their strength and courage is awe inspiring. I want to be like them. I want to get on with life. So, as the endgame of surgeries is approaching I just want to have the courage to move forward and beat cancer before it even has a chance. I want to be strong.

If you’re out there reading this because you’ve googled BRCA after getting your results, just know you’re not alone. Message me if you want to talk to someone who has no idea what the hell she’s doing, who feels some self pity, has doubts and yet is still moving forward because that’s what I must do. I don’t have cancer and god willing you don’t either.

The long goodbye to my ovaries and breasts is coming to an end this year and I’m going to try to face it with the same hope, faith and courage that my mom battled cancer. I’m getting the chance to beat cancer before it even enters the fight and that is a gift.

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About Jody

Jody is a writer living in Los Angeles. She’s best described as a work in progress - aren’t we all?
This entry was posted in Health, Health and Wellnes, writing and tagged , , , , , , , , , , , . Bookmark the permalink.

10 Responses to The Long Goodbye – My BRCA Journey

  1. Anonymous says:

    My hear is full with the love I have for you gals, hang in there Jody, I love you!!!

    Like

  2. Bridget says:

    I am thinking of you! I also followed women on Instagram, found support groups, and bloggers 😉 there is something about the BRCA sisterhood and how we share our stories that is forming a online community of warriors! Strength to you!

    Liked by 1 person

    • Jody says:

      The community definitely helps navigate all of this often overwhelming information. I’m getting a bit more nervous about it all as I prepare to begin scheduling the surgical appointments. But, just trying to keep moving forward. Strength and clarity to you. I’m here if you need anything. ❤️

      Liked by 1 person

  3. Bridget says:

    Thank you! 💕 My BPM is scheduled end of June! I hear you on the nerves!

    Liked by 1 person

    • Jody says:

      I was worried (I start just about every sentence and thought with these 3 words) about scheduling the BPM in June when it’s so hot. At least where I live. I don’t even know if that’s just an excuse. I’m having my ovaries/fallopian tubes removed first, probably in April. Final consult for that is March 11th. Consult with plastic surgeon for BPM on same day. It’s all so much.

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      • Bridget says:

        It’s pretty hot where I am too. Honestly, I didn’t give much consideration to that. However, having the ovaries/fallopian tubes removed first will definitely impact that. It really is all so much!

        I’m dealing with dysplastic nevi (pre-cancerous moles) before my BPM. What is helping me is taking time for emotional healing as a way to confront the trauma that we surely have been dealt.

        Your heart is guiding you. You just have to get your head of of the way!

        Liked by 1 person

      • Jody says:

        I just read about your moles, that’s a scary element to add to all of this. You’re so right, emotional healing is important. I’m sorry you’re going through this, but I feel certain we’ll both get to the other side of it and move on with our lives.

        Liked by 1 person

  4. Bridget says:

    Indeed! We will get through this! One day and one decision at a time!

    Liked by 1 person

  5. Michelle says:

    Hello Jody,
    Thank you for sharing your personal experience!
    I know your sister Jill and just read her Facebook Post about what she, you and your Mother are dealing with.
    I too have the BRCA2 Gene! I found this out after my Triple Negative Breast Cancer diagnosis in 2006. After my surgery, chemo and radiation treatments, I also selected to have a preventative Hysterectomy.
    I wanted to let you know, as I’ve also said to Jill, if I can be of any assistance with questions or information, please do not hesitate to reach out.
    Will be thinking of you all and sending good thoughts and positive vibes your way!

    Like

    • Jody says:

      Hi Michelle,
      Are you cancer free now? I sure hope so. Your story is so much more profound than mine and I realize every day I’m lucky that I don’t have cancer and get to do these surgeries by choice. Thank you so much for your kind words and offer of support. That’s really just so thoughtful of you. ❤️

      Like

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