Beyond the Pink Moon

“52 Octobers” – A Guest Post for HBOC Week by Nicki Boscia-Durlester

I am pleased to once again this year feature two guest posts during HBOC (hereditary breast & ovarian cancer) Week. This year I have the privilege of sharing a mother’s and her daughter’s stories. The first post is by my good friend and fellow advocate and author, Nicki Boscia-Durlester, a cancer survivor whose family history includes a staggering number of cancer diagnoses and deaths. The second, soon-to-follow post will feature Nicki’s daughter, Ally, who shares her previvor story. Many thanks to Nicki and Ally for their willingness to share their stories with you, my dear readers.

“52 Octobers”

by Nicki Boscia-Durlester

One of my earliest childhood memories is of my mother slowly crawling her fingers up our kitchen wall. At the time I thought she was playing Itsy Bitsy Spider. I would sing along in amusement as she struggled to reach as high as she could. I had no idea she was trying to strengthen her right arm, which had been ravaged by a radical mastectomy. I was 5 years old. At 58 the image is as vivid as that day in late May 1962.

I had no clue then that my mother and six of her sisters would be diagnosed with hereditary breast and ovarian cancer (HBOC), linked to a BRCA2 gene mutation in my large Italian family. Six of the sisters, including my mother, would lose their lives to HBOC. Our specific BRCA2 mutation would not be discovered until 1998, after decades of research by the National Institutes of Heath (NIH). My family had participated in a study at NIH to identify mutations linking malignancies in large families.

I suppose I always knew I would get breast cancer, especially after finding out I carried my family’s BRCA2 gene mutation. I had my chance to make a preemptive strike, but chose active surveillance instead. Maybe I thought I was destined to walk the same path as my mother or that I did not deserve to avoid the same fate. It seemed like a family business I was predestined to join. I often struggle with that. After all who would not take the opportunity to avoid breast cancer? Once diagnosed, I felt liberated. I finally had the reason I was looking for to remove my breasts, without people thinking I was a hypochondriac.

Eighteen years earlier at the age of 34, I had a prophylactic total hysterectomy; that was prior to knowing I had the mutation. My mother also had fallopian tube cancer, a stealthy opponent without early detection methods, which eventually claimed her life. In 1990, prophylactic surgeries were not in vogue. I thought if I also removed my breasts people would think I had jumped off the deep end. Removing them without a cancer diagnosis seemed too radical at the time, a clearly myopic way of thinking, that came back to haunt me. Hindsight is a curse.

In the aftermath of my diagnosis, bilateral mastectomy and recovery my only daughter tested positive for my family’s BRCA2 mutation at the age of 23. She weighed her options carefully for three years before having a prophylactic bilateral mastectomy. At a later date, hopefully after having children and by the age of 40, she will prophylactically remove her ovaries and tubes. At some point in the future my only son will also test for the mutation. I hope and pray he is negative.

My life has changed course since my diagnosis of Stage IIA ER+, PR+, HER- breast cancer in March 2009. Supporting other survivors and previvors has become my life’s work. After self-publishing my memoir, Beyond the Pink Moon, I founded a Facebook group by the same name, a global support group for breast and ovarian cancer survivors and previvors. Members also include renowned doctors, RNs, genetic counselors, healthcare professionals and HBOC advocates. It is an active forum for discussion that includes breaking news and relevant research articles and studies in addition to healthy lifestyle and prevention tips. With almost 3,100 members in 30 countries, we call ourselves The Pink Moon Lovelies, a name coined by fellow moderator, Susan Long Martucci, a two-time breast cancer survivor. Melissa Johnson Voight, a BRCA1 previvor also moderates the group. Collectively, we published The Pink Moon Lovelies: Empowering Stories of Survival, an Amazon best-selling anthology of 50 stories from breast and ovarian survivors and BRCA previvors from seven countries, with a Foreword written by world renowned breast surgeon, Dr. Kristi Funk, Medical Director of Pink Lotus Breast Center.

It has been fifty-two Octobers since I watched my mother, Bianchina Buschi Boscia, crawl her fingers up our kitchen wall while singing along to Itsy Bitsy Spider. I cannot help but draw an analogy between the spider, who never gave up, and the search for the cure. Who would have thought more than a half century later the conversation would remain the same, only now it is not in hushed whispers behind closed doors. I hope someday the elusive cure will end the dialogue about breast cancer. In the meantime, like the spider, I will never give up. I will continue educating with my fellow advocates until someday we can rest in the sun. In my case… Beyond the Pink Moon.

About the author:  Nicki Durlester

Nicki Boscia Durlester is a BRCA2 breast cancer survivor, Author of Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival, Founder and Administrator of the Beyond the Pink Moon Facebook group and Creator of The Pink Moon Lovelies: Empowering Stories of Survival. Contact info: nicki@beyondthepinkmoon.com
Twitter: @nickidurlester
Note:  To learn more about both books, please click on the book images below.

 

 

 

Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival

 

 

The Pink Moon Lovelies: Empowering Stories of Survival

 

Is there a hereditary risk factor for cancer in your family? 

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33 thoughts on ““52 Octobers” – A Guest Post for HBOC Week by Nicki Boscia-Durlester

  1. Nicki Boscia Durlester, you and your family have seen too much. So many people would just get the surgeries, recover from cancer and run away from this overwhelming breast cancer “shit storm”. But not you. And we, the Lovelies are so lucky you are like the spider and never give up. This group reminds me of a quote I read awhile ago “When spider webs unite, they can tie up a lion” (Ethiopian Proverb). Thank you for uniting us..perhaps one day, we will get this lion. xoxoxoxoxo

  2. Nancy, thank you for honoring my partner in crime, Nicki Boscia Durlester. For honoring her mother and daughter in a special way. Such a powerful and meaningful story! Thank you for sharing your knowledge and for educating individuals about HBOC. Appreciate your hard work and devotion to spread awareness. Blessings!!

    1. Melissa, I may have hung the moon, but you painted it pink. Partners, peas with one goal since the beginning… Saving Lives. Thank you for being by my side day in and day out. Your friendship and support breathes new wind in my sails each day. Onward and upward my friend! xoxo

    2. Melissa, It’s an honor to share their stories, just as it was last year to share Carly’s and Helen’s. You know how I feel about the power of shared stories! Thank you for all you do, too, and thanks for your kind words and ongoing support.

  3. What a powerful story. Thank you for sharing your story as well as so much of yourself! Thank you for turning your story into a vehicle to change lives – globally! We love you so much!

    1. Ramela, Team Lovely all the way!! I’m just a girl who found what she was searching for her whole life beyond the pink moon. None of this would be possible without my Lovelies by my side. Collectively, we’re making a difference.e Thank YOU for all you do to educate. Love you too!

  4. Gawd, Nicki. It’s brilliant that both you and your daughter are writing on Nancy’s blog this week, but I wish you hadn’t had any reason to. I know it’s fortunate that we have more knowledge now, and more options, for dealing with HBOC. But honestly, reading your story, I’m struck again by just how creepy it is to live with this history, just how much a person could feel that her family was cursed. My mother’s side of my family surely has some kind of genetic pattern, but it doesn’t fit the ones that are known. Well. I’m just glad you and your daughter are still here. Kathi

    1. Thank you, Kathi! I’m struck by 52 Octobers. Never thought the conversation would remain the same after five decades. I cannot imagine how difficult it must be for you not knowing what your family’s mutation is. I remember all of those years filling out questionnaires for NIH. I had almost given of hope. Finding out that there was indeed a link to the malignancies on our family validated what I believed all along. I refused to buy into the curse theory. Btw, I’m so glad you’re here too. We have lots of work to do!

  5. I agree there is so much power in sharing our stories; and in Nicki’s story there is so much poignancy along with the power. Nicki, you are a beautiful and inspiring woman inside and out.

  6. Nancy’s Point, thank you for featuring and sharing my mama bears beautiful and brilliant story. Continue to educate each and everyday and lets continue to save lives!!! Smile Always 🙂

    1. Ally, It’s a privilege for me to share your mama bear’s beautiful and brilliant story. And I can’t wait to share yours next. You are both amazing and so very inspiring. Thank you to you both.

  7. “Fifty-Two Octobers” is riveting and real for all those affected by HBOC. A must read for previvors & survivors alike. Empowering women & men with knowledge is life saving! Bravo Nancy & Nicki, both of whom advocate each & every day. Thank you!

  8. Another touching piece written by a true wordsmith Nicki Durlester. I am proud to have coined the moniker Pink Moon Lovelies. Thank you from the bottom of my heart, Nicki, for including me in your daily life. Your friendship and sage advice mean the world to me. Thank you for all you do on a 24/7/365 basis. Your tireless efforts to save lives is truly admirable.

    1. Susan Long Martucci, thank you for all do as a fellow moderator on Beyond the Pink Moon. You have been by my side for almost four years now. Without you, there would be no Pink Moon Lovelies. That meaningful name has united survivors and previvors around the globe. You have made an immeasurable difference in countless lives. None more than mine.

  9. Thank you, Nicki, for this post and for all the work you do! I did not know there was such a thing as a breast cancer community prior to my own diagnosis but now I do and you, Susan, Lisa, Melissa, and so many others have made it happen. . . peer support is such an essential part of this journey and it does help to know there are others facing similar difficult medical decisions.

    1. Kj, you are an integral member of Beyond the Pink Moon. Your intelligent commentary and thoughtful remarks have enlightened us. Your unique voice is greatly needed in our community. Your insightful blog post today on Brave Bosom is a great platform to springboard from. I do hope you become a contributing writer on Huff Post. Think of the educating you could do, Professor. The BRCA community is your classroom. The far-reaching effects would be more lives saved.

  10. Nicki, knowledge is power. I believe you have helped us all to have that power.
    I thank you for all you do. You have given us a place to pour our heart and soul out.
    Plus given us avenues to explore different areas of education.
    Thank you Nicki Boscia-Durlester for all you do. Xxx

  11. I will never again think of Itsy Bitsy Spider in the same way. What a beautiful, yet sad story. I too am from a large italian family, though we believe our mutation came from our dad who passed away from some unknown cancer in his trunk region before we knew of the gene…. Thank you for all that you do. I truly hope many lives are saved by your story. I know for a fact you have touched many lives, my own included.

    1. Thank you, Lisa. Means so much coming from you. We speculate that our BRCA2 mutation was passed down by my maternal grandfather. He passed away from what we believe to be mesothelioma. My maternal grandmother did not have cancer. A 50/50 chance for each family member to inherit the mutation, but in our case most lost the coin toss. Many thanks for all you do to educate. Just so glad our paths crossed. Up the water spout we go!

    1. Eileen, thank YOU for taking the time to read my story. In spite of all I have gone through my BRCA2 mutation has never defined me; just part of my DNA. All families have something. Live strong, live long!

  12. Nikki has been a great support to myself and so many when we struggled with this terrible disease. Nikki you are forging the way to be heard, for change, for updating and putting a face to our stories…such a fearless warrior, a sweet soul, a dedicated mom. Love you Nikki

    1. Tracy, (aka my Buttercup), thank you for taking the time to comment. You know I’m just a girl trying to make a small difference as I make my way through this crazy thing we called life. Thank you for being my friend. Love, Your Angel Pie

  13. Love my Mama moon and her baby bear, not just a girl but a mini hurricane in your intensity and absolute dedication for saving lives. Thank god from down under you exist. Thanks Nancy for giving both lovelies a platform. xxxx

  14. Nicki, Oh my gosh. This post moved me to tears. You and your family have been through too much….too much. This is such an eloquent, poignant post. I hope your son tests negative and that your daughter is fine. xoxo

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