October- a guest post

Today, I would like to introduce Sara Bartosiewicz-Hamilton. Sara started FLAT & Fabulous with Barbie Ritzco and I quickly joined the group, I find the group to a balm and a relief. Sara is an amazing woman, focused, direct, compassionate. I stand in awe of what she has been able to accomplish and I hold her spirit in loving grace as she attends her best friend, my hero’s, funeral this week.

Without further ado, here is Sara’s guest post:


 

Beautiful fall day in October
 
Back in the day, October meant fall was in full swing – full of beautiful colors, the leaves in Michigan changing from green to red, orange, and yellow. The fun surrounding Halloween, picking apples at the orchard, and fresh cider on hayrides. And pulling out our sweaters and getting cozy by bonfires.

October means something much different now. It is a month where the entire world focuses on breast cancer “awareness”. I would like to meet the person who is not aware of breast cancer.

It was in the fall of 2006, I found out that I have the BRCA2 mutation. I was told at 29 that I didn’t need to do anything about this. I begged to differ. I told the genetic counselor (term used very loosely as this was not a trained genetic counselor but a nurse tasked to deal with those of us who were being genetically tested in the local cancer center) to set me up with whomever I needed to talk to about a prophylactic mastectomy. And, truthfully, I thought my mastectomy would let me walk away from cancer and having to “deal” with it. I thought I would be free from the fear that I grew up with and I thought my family and I would saunter on with life, never giving cancer a second thought.ever.again.

The reality is the fear didn’t “disappear”. Eventually I had a prophylactic oopherectomy/hysterectomy at the advice of my oncological gynecologist. Afterwards, I came to the realization I had done what I could to prevent cancer – the rest is out of my hands. I can still develop breast cancer. I can still develop ovarian cancer. Because of the BRCA2 mutation, there are other cancers I am at higher risk of developing, some of which my family has a history of. I choose not to let fear rule my life and simply live life with the knowledge I must continue to be vigilant about my health and teach my children to make their health a priority.

From the beginning, I made a very conscious decision to be open about my journey – I shared in great detail in my blog and in various formats. Back in 2006, I couldn’t find other young women walking the path I did. It was isolating and trying to get support from people who had no understanding of what I was dealing with was disappointing. I was determined to leave a mark so that those coming behind wouldn’t face the same loneliness and despair I had felt. That determination is what led me to posing for The SCAR Project and, subsequently, becoming part of a sisterhood that has truly changed me in countless ways.

One of my SCAR sisters would become my best friend. I met Barbie Ritzco shortly after she posed for David Jay. She and I started working together on The SCAR Project and, a month after I chose to have my reconstruction extracted, we created FLAT & Fabulous. We wanted to create a safe place for those of us living without reconstruction after mastectomy. We envisioned a new sisterhood which would focus on empowerment and living life to its fullest, moving away from cancer and focusing on how to live the best version of ourselves. It was intoxicating as our membership grew – we only expected a handful of women we already knew. We were excited to welcome our fellow FLAT & Fabulous sisters! We noticed women we knew in other forums joined us – they had been quiet about their reality, thinking they were the only woman living without reconstruction – it caused us to realize we may not truly know how many women have been “hiding”, thinking they were alone. And as we worked to get our group out there, we heard from new members again and again I thought I was the only one.

I vividly remember the day. One of our original members happened to read a meme. Within the meme, a reference so small that it was surely missed by many but, to someone living without reconstruction, it was profound. It hinted that perhaps women choosing not to have reconstruction after mastectomy were actually in the majority. That was a game changer. While I truly support each woman making the choices right for her in her journey, the knowledge that those who choose not to have reconstruction are in the majority is mind blowing.

Barbie in front of her SCAR Project photo

I consider myself “lucky” – I have a few SCAR sisters who were living without reconstruction. I was able to talk with one before my extraction. She calmed my fears and reassured me I would be okay. Many women are given the perception that they are the only woman choosing not to reconstruct. Imagine that. Imagine thinking you are the only person in the world choosing to live a certain way. A way that is in direct conflict with the cultural expectations and confines of beauty. Choosing to do something that no one in your support groups or forums talks about – in fact, they intensely focus on the exact opposite. I am humbled by the courage and strength it took for these women to make this choice – especially as I hear the many stories of doctors refusing to perform mastectomy without reconstruction until they are psychologically evaluated, as if the only way they would make this choice is if they are mentally unstable.

Eventually, we opened a fan page – we realized that while we wanted to have a place for those living without reconstruction to find support, we also wanted to extend the message of empowerment and self-love to the masses. In addition, we use the platform to educate those around us about the choice to live without reconstruction.

This October is bittersweet. My partner, co-founder and best friend Barbie passed away at the end of September. The last conversation we had, I told her about the new website I was working on with a panel of Flat & FABulous sisters and our annual virtual 5K that we are dedicating to her and have even gotten medals for (Barbie LOVED her medals!). I would give anything to have her here to join in the celebration. I miss her and the partnership we had – incredibly unique and irreplaceable. I know she is shocked and proud of all that we have accomplished – she always was and always will be our biggest cheerleader.

Over the years, my perspective of October has changed. From appreciating the beauty of the fall to being annoyed and frustrated by the commercialization of pink. I have decided to take back the month, take back pink – if I am being pigeon holed as a “breast cancer” writer, I am going to make sure I get mileage out of the one month news outlets are interested. If the entire world is focused on breast cancer right now, I will raise my voice so others hear about the need for more research, accepting awareness has been achieved. My metastatic sisters who are literally dying. I will remind others, and kick myself in the pants, to be proactive – perform self-breast exams, stay on top of screening, discuss with your relatives your family history of cancer.

It’s okay to like pink – just be sure you understand that most of your dollars aren’t making it to an organization and, when it does, it probably isn’t being used for research to find a cure. It’s okay to hate pink – I understand your frustration. I encourage you to step beyond the pink – whatever side of the color you are on. Look at what is truly happening in the realm of breast cancer. Take a look at The SCAR Project to see what cancer is and that it doesn’t care about age or gender, read the stories of my SCAR sisters who have died – JoleneVanessaDarcie, and my best friend Barbie to realize cancer kills – it is not pink, it isn’t a ribbon. Don’t let this month paralyze you with anger or trick you into thinking if you buy a pink ribbon we are that much closer. Embrace each other, support each other and don’t take for granted a single breath you have been given.

always in my heart & on my mind, my bfffff

This week, I will be at Arlington National Cemetery, at the funeral for Barbie. I will be pondering her ultimate sacrifice for our country, grieving the loss I feel a million different ways and, ultimately, return to gratitude. Thankful for who she was, thankful for the impact she has had and continues to be, and thankful to have had such an amazing partner and best friend.

October is just a month. Pink is just a color. Live Sincerely. Be the best version of you. Be.fabulous.


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Comments

  1. Carol Hart says:

    A beautiful tribute to Barbie. Thank you. I am one of those women who found Flat & Fabulous and previously thought I was alone. All of the women in my support group were dealing with reconstruction and the resultant complications. Now when I visit other on-line BC support groups, I keep a look out for that one woman who hasn’t had reconstruction and thinks she is alone or is considering having her implants removed and I let her know about our Fabulous group.

  2. What a beautiful essay and I am hoping that this will go viral. If just one woman realizes that she is not “odd”, “different”, or whatever word she uses to self describe, you will have done well. I have never been diagnosed, but I am one that regularly gets called back for 2nd or 3rd check ups. Long ago I wondered what I would do. I knew I could survive the treatments, but I also knew that I wanted all breast tissue gone. Gone! No breasts, please. I thought I was radical, that I would be shunned by society. I now know that I am not the only one who thinks this way. I am hoping I never I actually get the diagnosis, but I am better prepared if I do. You have laid rest the fear I had of having to make this decision. If you have done this for me, I am certain that you have done the same for many others. Thank you for providing a platform for women to be honest about their struggles, their fears, their emotions. You are. FABULOUS!