Force

[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another  woman whose [Surviving Cancer.] [Absolute Reality.]  looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t  know that no reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B?   When I  met Toni at the Cincinnati Exhibition I produced in 2011,  she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story, and to share it here.  Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. As The SCAR Project exhibition will be premiering in Texas this fall, it seemed fitting to lead up to that with the story of the Lone Star SCAR girl. As she is a science teacher, Part I dealt with the Gravity of cancer. Part II is likewise aptly titled Force.]

Guest Post by SCAR girl Toni G.

After being diagnosed with stage 4 breast cancer at 28 years old, I found my life moving down a new path, even as the geography of my body was being redefined. My dream of being a scientist and having my own lab was no longer a priority like it was in my before cancer days. Being alive, and enjoying life, was. Being a positive force despite the cancer, was too.

In the days and weeks that followed my diagnosis I felt lost. There was an abundance of breast cancer information out there but only a fraction of it was relevant to my situation. I tried to find information from other twenty-somethings fighting cancer while still finishing their degrees. And still dating. And without children. Cancer was forcing me to make some of the most difficult decisions of my life. Sifting through the mountains of information to find the right answers for me felt isolating, was time consuming and emotionally exhausting: Erosion.

One decision was what to do with the breasts that were trying to kill me. I knew without a doubt they had to go, but what would I put in their place? After meeting with a plastic surgeon I knew my reconstruction options on paper, but one size doesnʼt fit all. At the time, I knew I wanted breasts, but I couldnʼt picture what my new breasts would, or could, look like. Expanders? Implants? With or without transplanted belly/back/butt tissue? Another twelve inches of scars on my body? Tattooed nipples? I tried to find pictures online to help make this decision, but there were surprisingly few resources available showing real post-mastectomy pictures. Especially in younger women.

One day on the Komen message board a photographer named David Jay posted that he was looking for young breast cancer survivors to participate in “The S.C.A.R. Project: Surviving Cancer, Absolute Reality”. After an inquiry he told me he wanted to portray through photography the cancer experience by showing the visible scars that are symbolic for so many women. He wanted to show the world exactly what I had been looking for. I immediately knew I had to be a part of this unique awareness project. To help other young women who are feeling lost, facing the same reality. To be a positive force.

David and I decided to do a series of portraits….before and after my bilateral mastectomy as well as after reconstruction. In 2007 I flew to New York City with my sister just months before my surgery to do the “before” shot. A year later, after my double mastectomy I flew back to NYC with my father and took the “after surgery” shot. This picture shows my reality: burned from radiation, scars where my breasts used to be and those million dollar chemo curls. These are a few of the symbols in my SCAR portrait. And my sheer determination.

Toni G

Part of my cancer battle plan involved a clinical trial where I had high dose chemotherapy and a stem cell transplant. With my immune system wiped out I was told reconstruction was going to have to wait a year due to a high risk of infection. A year of contemplating (and stressing over) reconstruction options passed. Then, in the short window of opportunity I had to have the reconstruction surgery, I was offered a chance to visit Peace Corps friends in Mozambique. Reconstruction was going to have to wait some more; I chose Mozambique.

Another year went by and I was still breastless. But by then I knew of other survivors, struggling with pain, necrosis, rejection, infection and many other complications that go along with trying to rebuild a part of your body from unnatural parts. The idea that reconstruction was the only way to go was starting to fade.

The SCAR Project evolved and in October 2010 I returned to NYC with all four of my siblings to attend the SCAR Project exhibition.

Toni G. and sibs NYC

I remember walking up to the gallery and seeing the portraits that had become so familiar to me; I’d only looked at them a million times before that night. I felt an instant bond with my SCAR sisters. We shared our stories. We all had similar questions about life after cancer and it was comforting to put bits and pieces of the puzzle together. Especially since we were assembling it without knowing what the final picture looked like.

I didn’t know at the time the impact The SCAR Project would have on me, let alone the cancer community and beyond. I hoped it would change the way people viewed the reality of breast cancer. I hoped it would give women strength to know there is life after cancer, even if it is filled with jagged scars and a valley of doubt. I wanted to be one of those pictures that women could look at and relate. I wanted to be an answer that someone else was looking for.

My hopes for the SCAR Project continue to come true as the exhibit travels, and more and more people find out about it and are inspired by it. It is the powerful force I hoped it would be. And I am so proud to be a part of it.

In addition to NYC I’ve also attended the Cincinnati and Birmingham exhibitions. I’m thrilled it’s coming to Houston this October. Even more thrilled that MD Anderson, the place that played an instrumental role in saving my life, is hosting the opening night.

As far as that “after reconstruction” shot David and I were going to do? Well, I canʼt pinpoint the moment I made the decision not to have reconstruction, but it happened sometime in those years of waiting to have it. It’s such a paradigm shift to have been so gradual. I don’t think I ever really thought of no reconstruction as an option. Our society is infatuated with breasts. “Every man’s a breast man” and 1 woman = 2 breasts…not one or none.

My SCAR sisters have shown me, both directly and indirectly, that I donʼt have to have reconstruction. They encourage me to embrace the new me and to live flat and fabulous like countless other women. And two of my lovely SCAR sisters, Sara and Barbie, have started a Flat & Fabulous Facebook support group for women who’ve chosen against having reconstruction. I continue to find comfort in communicating with women who have walked in my shoes. That finding other women who have walked in similar shoes was so very difficult is the very reason the world needs The SCAR Project. I needed the SCAR Project. And I know I’m not alone.

About joulesevans

Occasionally radioactive with a chance of superpowers. I use them to fight cancer. Also I write. My book Shaken Not Stirred...a Chemo Cocktail is available on Amazon and Kindle. Currently I am working with David Jay as The SCAR Project Exhibition Consultant & Social Media Manager.

4 responses to “Force”

  1. Marci says :

    Wow. Just…wow!

  2. helensamia says :

    Flat and fabulous.. That is a great attitude to have…

  3. Marie says :

    I had my surgeries before the internet connected people. There were no pictures and few survivors. No one my age at the time of my first one that I was aware of. I want to thank all the women who had the courage to pose for these pictures. You helped me see that I am not alone. Your courage also helped me to be more accepting of my ‘battle scars’. You inspire me with your strength. I hope I can inspire you with my longevity. I was first diagnosed at 30 and the second time at 40. I’m fifty four now and strong and healthy. There is life after cancer! Thank you so much for sharing so others don’t have to go it alone.

  4. Facing Cancer Together says :

    I really appreciate reading stories like these. Of course, reconstruction has been very good for many women despite the trails in getting there, but the option to remain flat and fabulous is an option that needs a louder voice. Personally, I was so glad to remain sans breast. Great post! ~Catherine

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