Blue is the New Pink

Guest Post by Oliver Bogler

“When I grow up I’m going to be a photographer.” That’s what I used to tell my kids, when they were at the age when saying it seemed to be enough to get you there. Now I’d add: “… a photographer like David Jay.” And by that I mean successfull, visionary and socially engaged.

I’m not kidding anyone of course, least of all my children. First of all, I’m never growing up! And secondly, I’m in my late 40s, enjoy my career in cancer research enormously and frankly lack the talent required for art. But photography is a passion of mine, mostly as someone who loves the art form and a little as someone who takes pictures. When I go to art museums I head straight for the photography section, and when I travel the world I often seek out photography above all other sites to see.

So following my diagnosis with breast cancer in September of 2012 I began to become interested in the intersection between this disease and photography. To say that there are a lot of breast cancer images out there, is an understatement in the age of digital photography, and much of it is in the vein of pink. In this landscape the SCAR Project stands out as a beacon of frank art. The first time you see it, it hits you. And that is saying something in an age when visual impact has become significantly blunted by the sheer volume and ever increasing shock value of the media that saturates our culture.

The SCAR Project portraits have an honesty and simplicity that create a connection between the viewer and the subject. The images of young women, bearing scars, are compelling, and draw you in to try and understand their loss and what it means to them. They are also beautifully made photographs, by an artist with a sure eye. The Project has evident integrity. And its goal, to raise awareness that young women do get breast cancer, that the disease does not respect age, is important. Wherever the images appear they accomplish their goal.

In the Fall of 2012, from my freshly diagnosed perspective, the one thing I thought that was missing in the SCAR Project was men. Just as David says “breast cancer is not a pink ribbon”, I say “breast cancer is not a women’s cancer”.

Oliver

Oliver’s SCAR Portrait

One in every hundred people with breast cancer is a man. Sure that is a pretty small number, but it is not zero. And men are another segment of the breast cancer world where raising awareness is still urgently needed. Men routinely ignore their symptoms, and are diagnosed later with poorer outcomes because of denial and ignorance.

I am still a little stunned that David agreed to consider men as subjects for his work, and has started a connected body of work, the SCAR Project: male breast cancer. Stunned and deeply grateful. This new work focuses on men of all ages, and they are mostly older than the women in the SCAR Project. That’s because men with this disease are older, and because the goal is to raise awareness for all men. Amongst women, the focus is on younger women, where awareness also lags behind. This male breast cancer work is still in its early stages and I am excited about its future.

As a result of our discussions around men with breast cancer, I was lucky to become acquainted with David and the SCAR Project team, and the idea of bringing the work to Houston was born. Susan Rafte of the Pink Ribbons Project came aboard early, and her foundation which works at the interface of art and breast cancer is the sponsor that is making it happen. Gremillion & Co. Fine Arts generously offered their gallery space for the exhibit. And Kathy Hathorn and American Art Resources are supporting the project too, both by connecting us all and by providing resources to get the pieces hung in the gallery. Now a large team of volunteers is helping make 10 days of viewing and events a reality. In October the SCAR Project will be in Houston for 10 days of exhibits, expert talks from doctors and survivors, chances to meet some of the women photgraphed in the Project, and to hear David talk about the work. There is also a showing of the award winning documentary about the SCAR Project, called Baring it All, at the Museum of Fine Arts Houston.

Please join us. Details of the activities are HERE.

[About Oliver: Dr. Bogler studied Natural Sciences at Cambridge University graduating in 1988, and then completed his PhD at the Ludwig Institute for Cancer Research, University College Branch in London, in 1991. Following a post-doc at the Salk Institute in Developmental Neurobiology, he rejoined the Ludwig Institute, at its San Diego Branch. His first faculty appointment in 1997 was in the Departments of Anatomy and Neurosurgery at Virginia Commonwealth University in Richmond. In 2000 he moved to the Hermelin Brain Tumor Center, Henry Ford Hospital, Detroit and was promoted to Associate Professor in 2002. In 2005 Dr. Bogler joined the Department of Neurosurgery and the Brain Tumor Center at the UT MD Anderson Cancer Center as Director of Basic Research, and was promoted to Professor in 2009. His research was focused on EGFR signaling in glioma and novel platinum compounds. In July 2010 Dr. Bogler accepted the position of Vice President for Global Academic Programs where he manages academic relationships spanning over 30 Sister Institutions in 20 countries on behalf of MD Anderson. In September 2011 he was also appointed Senior Vice President for Academic Affairs, and now focuses on overseeing the 300 people organized into 16 departments in this division, who deliver support for the more than 5,000 academic personnel at MD Anderson and are the stewards of our education mission. He is married to Irene Newsham, PhD, a cancer biologist also working at MD Anderson, and they have two children, aged 10 and 11.]

Follow Oliver’s blog HERE.

The SCAR Project Houston Exhibition Press Release

THE SCAR PROJECT: BREAST CANCER IS NOT A PINK RIBBON

TO PREMIERE IN HOUSTON, TEXAS OCTOBER 17-28, 2013

Houston, Texas—September 23, 2013—The groundbreaking photographic exhibition shot by fashion photographer David Jay is set to premiere at Gremillion & Co. Fine Arts Gallery, 2501 Sunset Blvd., Houston, TX 77005: The SCAR Project: Breast Cancer Is Not A Pink Ribbon.

The SCAR Project is a series of large scale portraits of young breast cancer survivors shot by fashion photographer David Jay. The SCAR Project is an exercise in awareness, hope, reflection and healing. Presented primarily as an awareness raising campaign for young women, The SCAR Project’s deeper message is one of humanity. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcending the disease, illuminating the scars that unite us all.

The exhibition opens October 17, 2013 with a special evening reception hosted by The University of Texas MD Anderson Cancer Center. Invitation required. For information, please contact: events@mdanderson.org. The gallery will be open for public viewing of the exhibition October 18-28 (closed Sunday and Monday). Gallery hours are 10:00 am – 5:00 pm. Admission is free. Scheduled events: TBA. A screening of the EMMY Award winning documentary about The SCAR Project: Baring It All will be shown at the Museum of Fine Arts on Monday, October 21. A detailed listing of the Houston exhibition schedule of events, with links to R.S.V.P. is available via The SCAR Project’s Exhibition Page.

Contact: Dr. Oliver Bogler, Senior Vice President for Academic Affairs at MD Anderson, email: obogler@mdanderson.org and Susan Rafte, Pink Ribbons co-founder, email: susan@pinkribbons.org.

Sponsored by: The Pink Ribbons Project (www.pinkrobbons.org).

Special thanks to Gremillion Gallery for donating the space and a special thanks to Kathy Hathorn.

For more information on The SCAR Project visit the website: www.thescarproject.org and www.thescarprojectblog.com. Follow @thescarproject on Twitter and Facebook.

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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.

Gravity

[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. Here is the first of two parts.]

Toni G

Guest Post by SCAR girl Toni G.

I was sitting in a tent at Zion National Park when I got the news. The voice of the surgeon who had biopsied a mass in my breast the week before came through my cell phone: “We need to talk”. My heart sank.

I had breast cancer. I was 28 years old.

I’d already planned out my vacation to Utah for the spring of 2007 to celebrate passing the doctoral candidacy exam—a feat that would allow me to continue pursuing my Ph.D. in Molecular Biology and Biochemistry. But  experiments didn’t cooperate, and I’d had to postpone the exam and take my “celebratory” vacation before I even answered one question.

And now this woman was on the phone saying words horribly foreign to me. ER+/PR-/Her2-. Grade 2. BRCA1/2-. Two IDC tumors measuring 3 and 5 cm.

More unfamiliar terms followed as she proceeded to tell me the course of treatment. I sat in silence while she described, in what seemed like one breath, oncologists, mastectomy, chemotherapy. When she spoke the word radiation I finally lost it.

My space-time continuum had just been warped by the gravity of cancer.

She wanted me to see an oncologist that day, but I was 1500 miles from home and a week away from my return flight. I told her I couldn’t that day. Or the next few. I had rented canyoneering equipment for the day and had miles of hiking to look forward to. I would be home in a week. I didn’t call my family. I couldn’t bear to tell them the heaviest news of my life over the phone.

The one phone call I did make was to the chair of my committee. My candidacy exam would have to be further postponed. It turns out, indefinitely—but that’s another blog.

The months following diagnosis were surreal. I’d become so used to people telling me that 20-somethings don’t get breast cancer that I found it hard to believe I actually did.

When I was 20, I found a lump in my breast. My surgeon insisted it was a cyst. No tests? No biopsies? Nope. When the pathology came back benign, I sensed an “I told you so.” He told me that even if I discovered more cysts in the future, I wouldn’t have to have them removed. “They’re normal,” he said.

“They’re normal,” I thought eight years later as I stood naked in front of the mirror slowly tilting my head and squinting. My left nipple looked odd and had gone flat. My gynecologist thought the scar tissue from my cyst removal was causing it. She never mentioned the words breast cancer.

Over the next few months I began to feel a mass in the same breast. I called my gynecologist’s office again and was told to call back in six months to follow up. I convinced myself it was just another one of those normal cysts. So I didn’t worry—for seven long months.
By then, the two masses in my breast were causing sharp shooting pains across my chest. The (finally) worried gynecologist ordered a biopsy.

And then I was in Utah, sitting in a tent…

When I did finally go home and called a family meeting, Dad was giddy. “You’re getting married!?” No, Dad. “You’re having a baby!?” No, that’s not it either. It made the truth more crushing.

My oncologist started me on chemotherapy immediately because the tumors were so large. He ordered a CT scan that came back with abnormal spots in my femur and four places in my spine. After a follow up PET-CT scan, I received a second blow. The spots were metastasized breast cancer.

I was now stage four.

I wasn’t concerned at first. My ignorance of metastatic breast cancer shielded me. But after a week of reading through scientific literature, I found myself shutting my laptop every night in tears, unable to handle any more statistics. Based on my research, I knew I only had a 25 percent chance of being alive in five years.

My oncologist said nothing had changed—not our treatment strategy or my life expectancy. I knew then I had to change oncologists. My life depended on it.

I found my second oncologist at MD Anderson. She cited current literature and was willing to be as aggressive as I wanted with my treatments. She understood my drive to do absolutely everything I could to get rid of the beast that was trying to pull me down.

“Absolutely everything” turned out to be the hardest experiment of my life. Seven months of chemotherapy, a bilateral mastectomy, a clinical trial with high dose chemotherapy and stem cell transplant, and six weeks of skin-scorching radiation to top it off.

It worked. I was declared to have “no evidence of disease”!

Just one week after I finished my treatment, I hiked to the top of the Continental Divide in Colorado. After hours of plodding through the snow and a chance encounter with a majestic mountain goat, I found myself sitting at the top of the mountain. Bald and burned and brave. I had defied gravity. I had defied cancer!

Toni Hiking

[All this defying of cancer and, most likely, more gravity as well, will be continued in Part 2 of Toni’s SCAR story, in which she considers the geography of cancer.]

A Response to Facebook’s Reversal of its Ban on SCAR Images

Guest Post by Lauren Culpepper

[Lauren is the production manager for The SCAR Project, David Jay’s right hand, my SCAR Project sidekick, not to mention, the most lovely soul to work with.]

Since The SCAR Project began six years ago, David Jay created a Facebook page for the project. What began as a small page of a few supporters has now become a thriving group supported by over 33,000. David has used Facebook as an immediate way of communicating directly and effectively as he continues his work with The SCAR Project. For years Facebook has randomly and periodically taken down images and banned David’s personal account which prevents him from posting.

It has been an unbelievably frustrating challenge. Every time this has occurred, there is no one at Facebook to contact in order to gain clarity on the image removal or ban. This has turned Facebook into a looming “big brother” for The SCAR Project, not knowing when it will strike again.

This time, however, a woman reached out via Twitter. Scorchy Barrington, currently stage IV and undergoing treatment, created a petition at Change.org on behalf of David and The SCAR Project that created a massive ripple effect with over 20,000 signatures. Two days after the petition was posted, Change.org got behind the petition, Facebook’s VP of global policy requested to speak to Susan and David, and a conference call was set up with Susan, David, Facebook, and Change.org. It was an extremely beneficial opportunity to listen to one another and have a chance to communicate directly. The following week, Change.org, Susan, Facebook and David exchanged emails editing what would become the new policy that you now
see on Facebook’s policy page.

While in many ways the new policy is a huge victory for breast cancer survivors, whether or not Facebook will continue to allow certain images to be posted on The SCAR Project’s page remains to be seen. The new policy is certainly improved, but also leaves plenty of room for Facebook to decide what images are allowed and what images are considered a violation. And, according to the new policy, The SCAR Project images previously taken down remain to be a violation. We continue to await the decision by Facebook as to whether or not they will re-post the images (including the hundreds of comments that accompany them) that were previously removed. It has now been over a month and we have yet to see those images restored to the Facebook page.

But the truth is that nothing has really changed at Facebook. In fact, the issue has nothing to do with breast cancer at all. Facebook never had any issues with mastectomies from the beginning. Mastectomies are not the problem. Nipples are. But not men’s nipples. Only women’s. Somewhere buried within the history of America’s societal evolution (or lack thereof), the female nipple became a body part to be hidden and ashamed of. The female nipple has and continues to violate every media policy in our country, but no one will admit to that fact. David Jay brought up the issue repeatedly while in discussions with Facebook, asking them to at least clarify that it was the female nipple that was in violation. Silence. No one wants to talk about it, yet everyone wants to abide by the unspoken “rule”: The female nipple is illegal in America.

And now, as we enter the world of breast cancer treatment (where we have everything from no breasts, breasts but no nipples, one breast with one nipple, breasts with reconstructed or tattooed nipples) we enter into a gray area that perpetuates the nipple conundrum. And the recent issue with Facebook’s policies has once again shined the limelight on the elephant in the room, only for the issue to be skirted around and avoided. How many more generations will continue to accept this view of the female body? With everyone’s recent finger-pointing at Facebook’s lack of clear policies regarding discriminatory, hateful, sexist, bigoted and misogynistic posts, the problem lies much deeper. And it is buried underneath decades of a misconstrued view of what a woman and her body represents.

You can read more of the press coverage at the following links:

ABCnews.com: Facebook Launches New Policy to Allow Mastectomy Photos
(Also posted on GMA/Yahoo)

ABC News Radio: Facebook Launches Policy to Allow Mastectomy Photos

NY Daily News: After backlash, Facebook says mastectomy photos are OK

Chicago Tribune: Facebook says yes to post-mastectomy photos

ThinkProgress: Facebook Promises to Stop Treating Photos of Breast Cancer Scars Like Pornography

CNET: Breast cancer activists win battle with Facebook over mastectomy photos

Huffington Post: Facebook Revises Wording of Policy on Post-MastectomyPhotos

The Daily Dot: 20,000 people convince Facebook to officially embracemastectomy photos

Medical Daily: Facebook Mastectomy Photos: Social Network ‘Clarifies’ Policy, Allows Breast Cancer Survivor Photos After Viral Backlash

TIME: Facebook Is Officially OK With (Some) Mastectomy Photos

Boston Globe: Facebook changes policy to allow post-mastectomy photos

Shape Magazine: Facebook Allows Post-Mastectomy Photos

Telegraph: Facebook allows mastectomy photos after breast cancer patient’s petition

The Inquisitr: Mastectomy Photos Allowed By New Facebook Policy

Daily Mail: Facebook launches new policy allowing mastectomy photos after breast cancer patient’s 20,000-strong petition

Herald Sun: Facebook allows post-mastectomy photos following petition

 

Angelina Goes Lara Croft On Cancer

Angelina Tomb Raider

[Angelina Jolie took tomb-raiding to a whole new level in her op-ed piece in yesterday’s NY Times. In the article, the actress/humanitarian/wife/mother/and not-just-in-the-movies-an-ass-kicking-superhero-of-a-woman, shared her own absolute reality of confronting the shit out of  breast cancer—before cancer could even think of drawing its pistol out of its holster. She revealed she has the breast cancer gene and has taken decisive action against the BRCA1 mutation she inherited, by way of a recent prophylactic bilateral mastectomy. Reducing her risk of getting breast cancer from 87% to under 5% seems like a no-brainer. It also seems a little barbaric that in this day and age the best we have to offer in the way of a cure/prevention is amputation. Bravo, Namaste, Cheers to Jolie’s health, and props to her, not only for the extreme courage in making such a difficult choice, but also in sharing her story with the world. Her willingness to use her superstar status to increase awareness will save lives. Literally, raid tombs. Collaterally, Jolie’s article, which has gone viral, is bringing much-needed attention to some of the struggles carriers of the BRCA1 and BRCA2 gene face. In today’s guest post, SCAR Girl Sara “Bartowski” Hamilton, who has written HERE about her own struggles as a Pre-vivor, weighs in on the discussion.]

Guest Post by SCAR Girl Sara “Bartowski” Hamilton

I am incredibly thankful to Angelina Jolie. It has been six years since my own prophylactic mastectomy and every time I am sure we have finally made it over the hurdle, I become aware we still have so far to go. And every time someone famous uses their platform to raise awareness and educate the masses, they help us make progress. Because Angelina chose to share her story, more families will hear about the possibility of a genetic component behind family members dying of cancer. They may choose to seek out genetic counseling. They may start communicating about a topic that is very painful. Angelina Jolie talks about her beloved mother and the pain she has that some of her children will never know their grandmother. My mom carries the same pain – my sisters and I only know our Nona through photos and stories. Talking about what is tearing families apart can be difficult but maybe Angelina’s story will help people find courage to talk about the possibility of a genetic component. And having the knowledge of a genetic mutation will help people be able to make choices fully armed with the current research and knowledge we have available.

True to her humanitarian nature, Angelina openly discussed the costs of genetic testing. Let’s be real, for Angelina, this is a drop in her bucket but she understands those costs are going to be prohibitive to others. Immediately my mind went to the case before the Supreme Court and their upcoming ruling on whether or not Myriad will be able to hold a patent on our genes. The reason our testing is so expensive and, therefore, often not possible for those who don’t have thousands sitting in their bank account is because Myriad currently holds a patent. This patent has allowed them to keep the price high when, in fact, the testing should at most cost a couple hundred dollars.

Not surprisingly, I also immediately saw comments from those who show up to judge the choices Angelina has made. Having dealt with harsh judgment throughout my own journey from prophylactic bilateral mastectomy with construction to my recent “deconstruction”, the critics struck a sensitive chord that I feel I’m particularly qualified to address. I wish the critics recognize these choices are not entered into lightly and without heavy consideration. Understandably, this upsets some of my BRCA sisters. It is difficult to make such a life altering decision and then have a mob of cruel critics tell you that you were being drastic or rash. I encourage my BRCA sisters to take these judgments as evidence of the work we still have to do; we obviously have many people who still need to be educated. But don’t take it personally. Stand strong in the reasons you made the choices you made and let your story continue to be told to help those who come behind. Let it also continue driving us to actively embrace that we all have choices and we must reach out our hands to support each other in these choices. The choice to be tested, the choice of surveillance, the choice of prophylactic surgeries, the choice of reconstruction, the choice of being flat*. And every choice is valid. None of our choices are easy but we all make the choices that we feel are best for us in that moment. And I am a perfect example that sometimes our choices will change…and that is okay too.

Later this morning, Brad Pitt showed up for some mad love. He publicly commented on Angelina’s choices and said:

Having witnessed this decision firsthand, I find Angie’s choice, as well as so many others like her, absolutely heroic…All I want for is for her to have a long and healthy life, with myself and our children. This is a happy day for our family. 

Maybe for some people it would seem strange that we applaud Brad for making this statement. However, I have talked to the women who decide not to go forward with a prophylactic mastectomy because their partner is not supportive. I have talked to women who are single who and terrified their decision will impact their ability to find a partner. In my own journey, I remember the very real fear and wondering if my husband would find me less than…and again when I was facing extraction I thought surely my hubby would never be able to look at me, touch me again. I love that Brad has spoken because he has given a voice to the men I know – my hubby, the husbands of some of my SCAR sisters – he has shown there are men who find the worth and beauty of a woman in more than her breast tissue. He embraces and admires Angelina’s choices and that is what should be and yet is often overlooked in our stories. I am incredibly proud of the men I know who embrace the choices of their partner and support them any way they can and I am thankful their story has a small piece of the spotlight today as well.

The fact remains, there is NO cure for breast cancer. It kills thousands every year. Genetic cancer, we are told, comes earlier and more aggressively. We also are told that we are at higher risk for recurrence. I pray every day a cure will be found…for my children, for my friends. We can all help get a little closer by not buying into the pink washing of our society – spend time reading about The SCAR ProjectBright PinkFORCE. Do some hard research about where your donations are going and make educated choices on where you want your money spent. And start raising your voice with us as we scream for a cure.

Much love  to you, Angelina Jolie. I wish you did not have to join our sisterhood but I applaud you, one of our newest sisters, for raising your voice and telling the world your story.

*Sara and fellow SCAR girl Barbie Ritzco have founded a Flat AND Fabulous awareness group on Facebook, and a Flat AND Fabulous support group page as well, for those living the Flat AND Fabulous lifestyle.

Ennobled By Her Scars

by Joules Evans

One of the loveliest perks of the role I get to play as exhibition coordinator and social media manager for The SCAR Project is collecting and sharing the SCAR girls’ stories here. Their portraits have impacted me (as they have you, as they have tens of thousands of others like you and me, who visit the exhibits, web site and follow the Facebook group) not only as a fellow breast cancer survivor but also on a basic human level.  Like SCAR photographer David Jay says, “The SCAR Project’s deeper message is one of humanity. The acceptance of all that life offers us . . . all the beauty . . . all the suffering too . . . with grace, courage, empathy, and understanding. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images intend to transcend the disease, illuminating the scars that unite us all.”

The SCAR Project is filled with portraits of young women who have come to the place where, as Carly Simon described—from her own experience of having battled the bitch that is breast cancer—“she accepts the war she went through and is ennobled by her scars.”

Ennobled. Honestly, when I first heard about The SCAR Project from my friend Shelly while we were a pair of bald chicks hooked up to IVs in the chemo cocktail lounge, ennobled wasn’t the first word that popped into my head when I imagined a photographic exhibition of young women confronting breast cancer and baring their scars.

Road-trip. That was my first thought. Shelly and I met in the chemo lounge and the only time we’d ever spent together up to that point was in the chemo cocktail lounge, sitting side by side in pale blue recliners, waging the ugliest war either of us had ever fought and neither of us were feeling ennobled quite yet. But I was feeling like a road-trip to the Big Apple to see The SCAR Project Exhibition (which I hadn’t even Googled because she said it was an awareness campaign I already felt pretty breast cancer aware) sounded like just the ticket.

I wasn’t as breast cancer aware as I thought I was. I mean, I was aware of my breast cancer, my absolute reality of what surviving cancer, or at least fighting like hell to survive it, felt like, my scars. But then I saw Emily’s portrait at The SCAR Project Exhibition.

Emily

My scars are similar to Emily’s, but mine tell a different story. At the time of my diagnosis I was a 42-year-old mother of three teens. I nursed them all as babies. In Emily’s portrait I saw a beautiful young mother-to-be confronting a completely different reality of surviving cancer than me.

That quote from Carly Simon comes to mind when I think about standing in front of Emily’s picture, the first time I saw The SCAR Project. Especially, that word: ennobling.

I was super fortunate to get to meet a couple of the SCAR girls that day. I was on a gallery tour with SCAR Photographer David Jay, and Vanessa Tiemeier and Melissa Adams were both in attendance for the tour, standing beside their SCAR portraits, emanating beauty, courage, and grace. Eager to share their SCAR stories. Ennobled.

As their images “transcend the disease, illuminating the scars that unite us all” so do their stories, and their lives, as well. And as I’ve gotten to know the SCAR girls over the past few years, I thought you might like to know some of the noble things these ennobled women are doing, to not just move forward, but to pay it forward.

Vanessa, who at 31-years-young has been battling breast cancer since she was 25, has long had a motto of living sincerely. She even has a live sincerely tattoo with a pink peony on her left calf. It’s her trademark “not a pink ribbon”.  Shortly after she was diagnosed with a recurrence of metastasis to the brain, she and her sisters founded The Live Sincerely Project to encourage others to LIVE… really live NOW… and not wait till they find out they are dying to start really living. If you haven’t checked it out and taken the Live Sincerely Pledge, it’s not just the best way you can send Vanessa a little love and encouragement, but don’t just do it “For V” Do it for you. That’s what she’d want, anyway, because that’s how she rolls, living sincerely as she goes.

SCAR girl Melissa Adams founded Cancer Fighting Princess to help meet the social, emotional, and physical needs of young women throughout their cancer journey.

SCAR girl Barbie Ritzco aka Soldier Interrupted aka Marathon Barbie is one of the most kickass inspirational people I know. Besides RUNNING ACROSS THE COUNTRY with Steve Cannon and his coast to coast for cancer million dollar fundraiser for Livestrong this summer, Barbie and her SCAR sister Sara Hamilton have co-founded Flat AND Fabulous, an organization supporting women who are living the “Flat AND Fabulous” lifestyle after having their breasts amputated from confronting breast cancer, rather than, for one reason or another, having gone the reconstruction route. There is a Flat AND Fabulous Awareness group HERE. If you are living the Flat AND Fabulous lifestyle and looking for others who have been there and done that click HERE.

On the other end of the spectrum, SCAR girl Cary Goldberg found that after rocking a flat chest for five years, her posture started to suffer and she needed a foundation garment to get her standing straight again. Frustrated by uncomfortable mastectomy bras that constricted the free flow of lymph and were just plain ugly, she was thrilled to discover a women run sports bra company called Handful. Once she tried on their pocketed sports bra, fell in love with it and learned it was already L8000 mastectomy bra approved, she became COO and part owner of the company. Handful is changing their manufacturing to Made in the USA and Cary dreams of making more products that help survivors as their four-woman company grows. Check out this video about Handful HERE.

Speaking of fabulous, SCAR girl Sylvia Soo founded Cancerfabulous to chronicle her own experience fighting back with style, to inspire, and as a resource for other young women fighting breast cancer. Sylvia is currently working on a book with Rethink Breast Cancer called, Cancer Fabulous Diaries, which is due out later this year. Her short film, Dear Sister won the Amazing Grace Award at Toronto’s Breast Film Fest last year. Sylvia is also one of the four women (as is Vanessa Tiemier) featured in the EMMY Award winning SCAR Project documentary, Baring It All.

Heather Salazar and Diana Featherstone both work with a non profit organization called the Pink Ribbon Girls, whose mission is to provide personalized support to young women throughout all phases of the breast cancer journey, and whose motto is: “No one travels this road alone”.

Amber Crouse founded (or rounded up;) the F*CK Cancer Posse. The Knoxville based commuity seeks to reach young cancer survivors and their caregivers/co-survivors so that they do not have to face cancer alone.

Jocelyn Banks founded Mommy Has Breast Cancer, an organization whose mission is all about supporting the entire family throughout a diagnosis and treatment of breast cancer.

Shay Sharpe’s Pink Wishes organization grants wishes to young women diagnosed with stage IV breast cancer, between the ages of 18-40 and facing a terminal diagnosis from their physician.

…it’s time

[Today’s guest blogger is no stranger to The SCAR Blog. When Facebook removed some of the SCAR images this time last year, Sara wrote an open letter to Mark Zuckerberg on her BLOG which I cross-posted here, with her permission. When quite a few of the SCAR girls were making preparations to head south for The SCAR BAMA exhibition, Sara wrote about it on her blog and once again I snagged it for reprint HERE (again, with her permission) because the SCAR sisterhood, which her article provides a lovely glimpse into, is one of the many beautiful things that has evolved from David Jay’s The SCAR Project Exhibit that many might be unaware of. When Sara got back from The SCAR BAMA exhibition, she wrote a beautiful recap on her blog, which of course also landed HERE, because she’s a generous soul like that, not to mention a dear friend. At which point I played both those cards in the latter part of the previous sentence and told her I thought with 3 SCAR blogs under her belt it was probs time for her to share her story. Of course, she did. And here it is. Thank you, Sara, love!]

by Sara Bartosiewicz-Hamilton

12/12/12…I call it my lucky day…the day my life started over. I had no idea how true this would be. Leading up to the 12th day of the 12th month of the 12th year, I was filled with anxiety, ready to have it over…at the same time, I wondered if I was sure. I kept telling myself, if ever I think I’m not ready, I’ll pull the plug…I still showed up. I started tearing up as the nurse prepped me for the surgery. She asked if I was okay.Yeah. She asked if I was sure I wanted to do this. Yeah. She said, it doesn’t make it any easier, does it? And that’s exactly what it was…I knew in my heart and my head it needed to be done…but knowing it, believing it, didn’t make it easier. Much like the beginning of this journey.

I was tested for a gene mutation in the fall of 2006. I knew I had a 50/50 chance of having the mutation…my spirit was prepared to hear I was positive. And I was. I was told I had the BRCA2 mutation and, through tears, I responded by asking the genetic counselor to set me up with what came next. She was confused. I was only 29, surely I could wait, surely I didn’t need to do anything until I was 40. Genetic testing was not new but it was not common yet either…I was the youngest person she had tested. I knew what I needed to do. I wanted to have a mastectomy. Take out the tissue that had an 85% chance of turning on me. Get it out, let me live my life. Let me give up this fear.

Fear. Our family tree of cancer explains my fear. In my mind, it was a matter of when, never a matter of if. I was surprised by some of the backlash I received from my choice to have a prophylactic mastectomy. I was naive. I was young. I didn’t realize there was a lot of fear behind that anger…sometimes, guilt. I couldn’t handle it so I shut myself away. I tried to find someone, anyone on the internet. My oncological surgeon told me she knew there were other young women choosing to have PBMs…I just couldn’t find any. I was isolated. Friends closest to me told me I shouldn’t do it if I couldn’t be happy. Happy? Was that what I was supposed to feel? I wasn’t sure what I was supposed to be happy about. This wasn’t a boob job. This was the removal of my body parts…my tissue ripped out of my body. And replaced…a plastic mound shoved under my muscle. A plastic mound that would grow over time as I was injected with more fluid, that would continue shoving my muscle around. And all of this to evade cancer…that may eventually come for me anyways.

Sara (29) and her daughter (2) two weeks after her preventative bilateral mastectomy

Sara (29) and her daughter Ms P one week after her prophylactic bilateral mastectomy in Jan. 20007

A girl found me on MySpace. She was the one who told me about the SCAR Project and she asked if I wanted to meet her and a couple other girls in NYC to be photographed. I looked up the website and was speechless. I was looking at young women…I was looking at me. I immediately reached out to David Jay:

David~ I would like to be involved…I have never had breast cancer but have the BRCA2 gene (mutation).  I had a prophylactic mastectomy at 29 because the gene (mutation) gave me an 85% chance of getting breast cancer.  I understand your project is for women who have fought breast cancer but I thought I would volunteer in case you could use me as well.  Regardless, I look forward to seeing the finished project.  When I was getting ready for my surgery, I was desperately searching for what I would look like afterwords.  I couldn’t find pictures of young women…this is powerful.  Thank you.”

I was so excited (and terrified at the same time) when David wrote back and asked me to come. I wanted to participate because I wanted there to be a photo. I wanted the next 29 year old to be able to find my photo and be able to find the courage to have a PBM…to know she was going to be okay. I was terrified because I was going to be photographed. Because there would be a photo of me…there was going to be a photograph of my scars. There was going to be a photograph documenting myimperfection…

It didn’t help when I received an email that it may be best to wait. When I asked why, I was told he was receiving emails and he wasn’t sure what to think. I was devastated. And then I was enraged. I received a copy of the email because my sister went to bat for me and was sent a copy of the email:

Please re consider the shooting of Sara… She is Not appropriate for this project. she NEVER Had cancer. She only took off her breasts as prevention!!! Everyone in her friend circle and family knows that she is not stable to do this!!!! She does things like this for attention. Who??? Has a DOUBLE MASTECTOMY at age 30 when NO cancer is present??? Someone who is not STABLE. Her mother has NEVER had cancer. Her GRANDMOTHER has NEVER had cancer. This is not the same as your other candidates. PLEASE DO NOT encourage her behavior… Now. I say this with love but as you can understand MANY of us are tired of her charades. And having her half naked in a magazine for us all to explain to people who are AWARE that she NEVER had cancer in the first place. It makes a mockery of those women who have actually almost lost their lives.”

It was obvious to me this was not someone closest to me – my grandma did, in fact, have cancer, she had died of cancer. On the flip side, to be honest, I think it hurt so much because I wondered myself. Am I the only one who goes through a double mastectomy at 29 (ahem, NOT 30) without there being cancer present? As I tried to explain the untruth throughout the email, I expressed that I had been wrestling with guilt. Guilt that my choice was done out of fear…guilt that I was a sissy because I was too afraid to get cancer.

When I finally made it out to NYC, I had a lot on my mind. I had also received emails from this same person spewing ugly things. At that time in my life, I was unable to recognize that sometimes people are ugly because of what is inside of them…and it has nothing to do with me. I was unable to detach from their words, unable not to internalize them. While it didn’t stop me from going, it made me pause. Was I doing the right thing? I was the last girl to be shot that day. I arrived after everyone was done being photographed (read: dressed). I sat down and had my make-up and hair done and then it was time. The point at which I was taking off my shirt, it seemed like a really crazy idea. Other than my doctors, my hubby was the only one who had seen the scars and he saw them with the security of a dark room and, even then, I did what I could to hide them. I was asked beforehand to bring something that had meaning or relevance to my shoot. I brought a charm with a picture of my littles on it and I also brought a photo of my mom and two of her sisters. I had something which explained without words the reason for my prophylactic bilateral mastectomy and I had something to explain why I would choose this. David went with the photo of my mom and two of her sisters. I’m so thankful he did – for all of time, my photo explains the family ties and the multiple generations our mutation has affected.

Sara’s SCAR Portrait taken in Dec. 2007, about a year after her PBM

Something happened at my photo shoot. Something I was not even aware of yet. I found a place where I belonged. A place of acceptance. A place of understanding. A place of love. I am forever thankful for my first SCAR sisters. They helped me embrace that my story was valid…they helped me see I was accepted into their “club” without having cancer. They helped pull me back on my feet when I didn’t even realize I was floundering. And they helped me grow taller that day. They were impressed by my courage and strength. I didn’t believe them quite yet but I held onto them, hoping they were right.

Fast forward a few years. It seemed surreal as I sat across from someone I called my best friend and heard similar words of ugliness being flung at me. Ironically, it was my five year “boobiversary” – five years after my mastectomy and I was being assaulted with words. Self-mutilator. In need of a therapist, not a surgeon. I had just disclosed I was planning on removing my implants. It was something I had been quietly considering for a while. I had not talked about it with many people: hubby, my plastic surgeon and with one of my SCAR sisters at the Cincinnati exhibit. I was having daily discomfort and pain and was hopeful that having my implants extracted would help relieve this. I was at the point of being ready to schedule the surgery and wanted the moral support of my friend…my “best” friend. I was caught off guard. The me who showed up for my PBM would have allowed this assault to continue until completion…the me who spent the past couple years embracing my new reality was strong enough to say stop…strong enough to walk away. Unfortunately, not before internalizing some of the accusations. I delayed my extraction for another year. I lived with the discomfort and pain as I searched my soul. I couldn’t deny what I was feeling but was I sure having my implants removed was the right choice?

I was back in Cincinnati when I had the courage to say it was time. I came home and the first conversation hubby and I had was that I wanted to schedule the extraction. It seemed like more than coincidence, perhaps a sign from the universe, when I was opening the mail immediately after our conversation and I opened lab results from my doctor confirming an autoimmune disease. When I had my pre-surgery appointment with my plastic surgeon, it was both amusing and sad to hear my plastic surgeon ask me what had taken so long. He told me he could tell this was the right choice for me…over a year before.

Fast forward to 12/12/12. My life truly did start over. When I woke up from surgery, the discomfort was gone. As my body healed, so did my spirit. I noticed I started looking at myself in the mirror without the little black box to censor what I was seeing. I realized I was the most comfortable I had been in my own body since my mastectomy. I found myself forgetting about the extraction and am no longer reminded daily of my surgeries, my BRCA mutation, or my lingering fear cancer will find me. Life started over, no longer hindered by the past.

I have been incredibly blessed – I always had someone in my corner. And, as my journey progressed, that corner became fuller and fuller. I choose to include the pain and judgment of the past because it is, unfortunately, what many women in my shoes continue to hear. However, while those hurtful words have no power over me, they give me the ability to reach out to someone else and say, I understand. I heard that too. I am hopeful that sharing will also help those who would place judgment to step back and recognize, it’s okay if you would never make the choices I made but it doesn’t give you the right to try to say you could live my life better than me. When I look back, I remember vividly the isolation I felt before my prophylactic mastectomy and again, feeling in the extreme minority as I was considering my extraction. I don’t ever want any woman to be completely alone. I recently started a Facebook group with my fellow SCAR sister Barbie – it’s called Flat & Fabulous. We are actively on the hunt for our fellow sisters who have had a mastectomy and, for one reason or another, do not have reconstruction. It has been both validating and heart breaking as I get emails from a stranger telling me she never knew there was someone else like her. Our page offers support, encouragement, and LOTS of laugh as we all go forward with living our new reality.

I recently wrote about The SCAR Project Exhibition in Birmingham and Joules texted me to ask if I would share my article here on The SCAR Project blog. About five minutes after she told me it was up and asked me to proof it, I received another text that said now that I’d written for the blog THREE times, but had yet to share my own SCAR story… “it’s time.

So, this is my story. It spans over my lifetime. It starts at my mastectomy. And again at my extraction. I am incredibly thankful for the lessons I’ve learned along the way about love, friendships, life, and what is truly important. Trying my best to Live Sincerely.every.single.day.

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Sara’s Live Sincerely Photo (taken with her family last summer) for The Live Sincerely Project

Living Sincerely

[Follow-up guest post and recap of The SCAR BAMA Exhibition. This article is posted with permission from SCAR girl Sara’s blog and that link can be found HERE.]

by Sara Bartosiewicz-Hamilton

It has been over a week since I got back…it has taken me this long to try to digest it. I think I have been avoiding it because I am left with so many questions and so many hopes…and yet I know the reality of the situation as well. I apologize in advance for the bouncing around that is about to occur. You’ll get two gold stars if you follow me to the end…

I honestly did not plan to go to the exhibit in Birmingham, Alabama. It was three weeks after my extraction. Before my surgery, I assumed I wouldn’t be ready to be in front of people…after surgery, I thought I wouldn’t be feeling well enough to go. But then, Billy posted in the SCAR girls page that he had just booked tickets for himself and Vanessa. I should have known in that moment.

I first met Billy and Vanessa in Cincinnati. Billy is the ultimate host and Vanessa is the epitome of glamour. Hubby and I talked on the way home how we wished we lived closer because we enjoyed their company so much. Who doesn’t love a couple who hike all over the city trying to find you food, only to have to pack up and hit a White Castle and have lots of laughs while doing it! It was shortly after the exhibit that Vanessa started to decline in health, her cancer had returned and had spread to the lining in her brain…and then her brain.

Live Sincerely party on the Purple People Bridge

Vanessa has a motto – live sincerely. She started posting more and more about this motto, what this means. She and her sisters developed a website. And then she invited everyone to a Live Sincerely party on the Purple People Bridge. To be honest, I wasn’t sure what to expect that day. Vanessa was going through treatments…major treatments. I am quite certain I was one of those lame people who talked louder so she could understand me because that was so helpful…and I was uncomfortable with both Vanessa and Billy, unsure of what to say, and kind of hung out in the background. In reality, I was struggling with a few things that day. But that day was a turning point for me. I was truly trying to take one day at a time and was still having a hard time doing so. Watching the interactions and the love…watching the intent. It moved me deeply.

Live Sincerely – spelled out in luminaries

In the fall, the same gallery that hosted the SCAR project hosted Angelo Merendino and his exhibit, The Battle We Didn’t Choose. Vanessa had traveled to Cleveland and loved the exhibit and Angelo. It was brought to the gallery for her birthday. It was so special to watch Vanessa. It was hard not to notice the obvious connection between Vanessa and the exhibit. It seemed as though Vanessa was showing the rest of us what daily life might be looking like for her and Billy. I talked with Vanessa about what her favorite photo was…her all pink accessorized outfit…Live Sincerely (of course)…and watched her delight as she looked down to see the luminaries spelling out her motto.

The beautiful birthday girl

What do you get a birthday girl who is Stage IV and trying to show the rest of us how to embrace life and live sincerely? I couldn’t come up with a great idea so I came up with a dumb one instead…a life size Hello Kitty balloon. I was kind of worried it would scare her…thankfully, it didn’t and thankfully it didn’t terrify their dog and I found out in Birmingham Hello Kitty is still going…not too strong but her head is still inflated…um, that’s three or four months later?!? That’s the best dumb birthday gift I’ve ever come up with.

I will be honest…every trip I have gone on, I prepare myself that this will probably be the last time I get to see Vanessa. I go into it thinking this and I think this is why I become so awkward around her. I don’t want her to know I am thinking this…so I act like a kid trying to hide something naughty they have done.

This trip, it was different. Maybe, I am different. Since that day on the Purple People Bridge, I have challenged myself to think differently. To truly see the blessings, no matter how big or small, around me. To truly live in the moment, not in the past, not in the future…live in the present. So, for me, although at that moment I didn’t realize there was a shift in my brain, I saw Billy’s post and saw an opportunity to spend precious time with someone who has tremendously impacted my view on the world. It also seemed fairly miraculous in itself – I cried when the DC exhibit had been postponed because, in all sincerity, I thought it would be the last exhibit Vanessa would have been able to attend. So,  here was the Birmingham exhibit and Vanessa and Billy were going. I woke up the Friday before with a sense of needing to be in Birmingham. I am incredibly thankful I listen to my spirit…I am incredibly thankful for a husband who supports me listening to my spirit.

Vanessa & me with Flat Jolene

My mission in Birmingham: Project Vanessa. I took the opportunity to be with Billy and Vanessa seriously…as serious as one can be when Billy is in the room. I felt incredibly blessed to be in the same state as them for multiple days, let alone the same hotel. And, lest anyone become concerned I was stalking them…well, I kind of was? But it seemed like they were both fairly okay with it.

When I first saw Vanessa in Birmingham, she looked so healthy. Yes, I see she looks different than when I first met her but she also seemed less tired or worn down than when I have seen her this past year. It took me by surprise, actually. And it made me pause…I had already been struggling with my thoughts. Over the past year, as I mentioned, I kept seeing Vanessa and thinking it was the last time I would see her. I began to consider that I was counting her out and she is still here. It frustrated me…I don’t want to do that…and I know Vanessa wouldn’t want me to do that.

It reminds me of a time in high school. I was brought to a hospital about an hour from where I lived…I was brought there to say goodbye to an aunt who had ovarian cancer. I was too young to remember how long she was in that hospital or how long it took but my aunt is alive and well today. And I began to wonder…why have I stopped believing in miracles? Why have I automatically assumed it won’t happen? I know I believed it couldn’t…I am unsure what I believe today.

He was supposed to be taking the photo of Vanessa and me…BILLY!

Vanessa was anxious to get to the gallery…we all were. Unfortunately, my group got a bit…well….lost. So, by the time we made it, Vanessa and Billy were on the hunt for food…Project Vanessa was not going well! (I just wondered, perhaps Billy had his own covert mission: operation avoid me!!) It was probably a good thing my group was so late…it made it much easier to find a spot to hide as I cried. It is a regular thing for me…surrounded by the beauty and strength of my SCAR sisters photos resorts me to tears. This time, it was a bit different because I feel different…as if those sisters are the only ones who truly can understand where I stand today…and a bit of gratitude mixed in…sensing I was exactly where I was meant to be in that moment.

Thankfully for me (and Project Vanessa) some of us met for dinner. I made myself a nuisance and sat directly across from Vanessa and Billy. It was the first of many conversations Vanessa and I (and Billy) had over the weekend. Yes, there were times where she repeated a story…like telling me about the leg warmers she was excited to have for the exhibit and thought she had misplaced. But it didn’t bother her when she asked me if she had told me about it yet and I answered honestly, yes. We just moved on. I watched as she took pictures…I don’t know how to describe it. It would seem almost like an OCD behavior but, at the same time, she was okay if she was encouraged to just stay in her seat and relax. I got to hear about her trip to Ten Thousand Villages to purchase ornaments for her nephews. She was so excited as she told me the process of picking them out (and getting to go in the back room to see the ones not on the floor yet) and how special it would be as they open them up even when she is no longer here. Yes, she openly says this…and, in a way, it was a relief – acknowledging this humongous elephant in the room. And, yet, we just moved on. I explained how I do the same thing with my kids – a special ornament every year and how they love it…every year, they are most excited to unwrap the ornaments that are their’s and hang them on the tree. Vanessa said she hopes it will be the same for her nephews.

Selfishly, I was relieved when she called me by name. Over the past year, I have assumed Vanessa didn’t know who I was. Yes, I met her before her health deteriorated but it isn’t as if we spent a lot of time together then. I have interacted with her over the internet but it isn’t the same. She has had a lot going on, she has been through a lot, it would have seemed totally normal to me if one day she looked at me and asked me who I was and why do I insist on following her around. So, to hear her say, Sara….it meant a lot…priceless, actually.

Bacon lollipops – Vanessa gave them two thumbs up!

The rest of the time, I just followed Billy and Vanessa’s lead. We ate breakfast together at the hotel. I got to see how Vanessa’s tastebuds might be a bit…off. It reminded me of the movie Elf (and yes, I told Vanessa and Billy this). Where Buddy (the Elf) puts syrup on spaghetti and is addicted to sugar. Vanessa made hot chocolate and then put sugar and cream in it. She ate waffles and needed cinnamon and sugar and syrup in each of the squares (actually, I have been known to try to have the same ratio with waffles and syrup). While Vanessa was eating her waffles, she talked about all kinds of things. I got to hear about the first time she met Billy…she talked about her wedding day and how Billy may come by being a smart alec quite naturally. It was so special to hear about all these memories Vanessa has…and interesting to watch her remember them but not quite remember if she had told me about those leg warmers yet.

At one of the breakfast dates, I asked Vanessa if I could look through her camera. After watching her at dinner, I knew her card must be overflowing. I wanted to get a glimpse at what she is thinking about, what is catching her eye. She graciously allowed me to look. It was fairly remarkable. I got to see the last several weeks of her life…some pictures that reminded me of the tag project but there were so many others that, well, they kind of took my breath away. What I saw must be what day to day life looks like when you actually pay attention. The details of a room…the artwork, the flower arrangements, the colors. The things we do to “finish” a look but then never pay attention to them again. Vanessa and Billy had gone to a restaurant called the Mellow Mushroom. Vanessa took all these photos of all these things in the restaurant. I went to the restaurant later in the weekend and it took me a bit to realize, I am sitting among Vanessa’s photos. She also had photos of an iron, standing up, laying down. Pictures like that. But I enjoyed the opportunity to see where her brain is at right now and watching it unfold in her pictures.

I tried not to pry. I asked how she slept, I would ask Billy how he was doing. When I got the canned answers, I let it be. I offered to take Vanessa with me to the store, I understood when the answer was she probably wasn’t up for it. I wanted to help and understood that helping might be just being present when asked. And I enjoyed every moment I could, listening to Vanessa, talking with her, helping her. It was beautiful.

Vanessa reading her speech – that’s me holding the poster she made

I watched with pride as Vanessa read her speech to the guests at the gala. Vanessa and I talked multiple times about how she didn’t want anyone to be upset she was reading her speech. She had written it beforehand because she wanted to be sure she remembered everything she wanted to say. I reassured her multiple times, people want to hear from you, they aren’t going to care that you are reading it. I was so happy when she gifted our new SCAR sister Leah with the Live Sincerely poster she had made. Vanessa was so excited about it. When I was arriving in Birmingham, Billy had texted me they were at a UPS making this poster. Vanessa had told me multiple times she would not be able to get it home and she wanted to leave it in Alabama with one of the local SCAR sisters. In fact, Vanessa was a bit concerned after her speech and after she explained she was giving Leah her poster that no one was coming up to take their pictures with it. Was Vanessa unaware of the people around her crying? the impact her speech had? I was too focused on holding that poster and listening to her speech and willing myself to think only about what was happening in the moment but I knew everyone was incredibly moved and just needed a minute to recover. Don’t worry, they will…they just need a minute. (And if you did, please make Vanessa’s day and go post your photos at her website!)

Even as I have been writing and rewriting this post…I have had a mix of laughter and tears. Much like the bitter-sweetness of the weekend, though, thankfully, I contained my tears to the one time at the gallery. Being thankful Vanessa was there, being slapped back to reality to hear Billy say it may just be him at the next exhibit.

I don’t have a grand finale for this post. In my mind, I still have many questions that may never be answered. Yes, I think about the miracle that occurred in my aunt’s life and I am now praying for the same miracle in Vanessa’s life. At the same time, I comprehend, as much as I am able to, how grim the situation is. Vanessa has cancer in her brain that is growing. The miracle of restored health, it might not happen. I am beginning to realize giving up on the belief of miracles may be a way in which to protect myself when it doesn’t come to fruition. Much like I have approached the times I have seen Vanessa over the past year as the “last time”. Because, if I prepare myself, it won’t hurt as much? In essence, it created a barrier between us and I am immensely thankful that barrier was not in Birmingham.

Perhaps, the weekend in Birmingham was the ultimate lesson in Vanessa’s guide to Live Sincerely. I got to spend an incredible time with her (and Billy) but I had to live sincerely doing it. There were no tears over Vanessa, there was no guarantee of a next time. It was living sincerely in the moment and being thankful for that moment.

Clowning with my sisters

Vanessa~ Thank you…from the bottom of my heart and soul, thank you. I love you~Sara

Updated to include a link to The Live Sincerely Project post in which Vanessa’s sister, Jessica, mentions part of my post. It is a great post that touches some of the same feelings I have…but be sure to check out the family photos at the end – hilarious!

The F*ck C*ncer Posse Story

[I first met today’s guest blogger at the SCAR Cincinnati Exhibition in 2011. Amber Crouse was one of the about 20 SCAR girls who made that first exhibition outside of the Big Apple so freaking amazing. For me, it was life-changing. One of the things that struck the most beautiful chord, which I can still hear to this day, was the delightful pleasure and deeply felt honor of getting to see the sisterhood of the SCAR girls. They. LOVE. each other. David Jay has said The SCAR Project is really not about breast cancer but about humanity and the scars that unite us all. I find that to be… so beautiful and true… and The SCAR Project Exhibition… such a profound visual aid… because the SCAR girls (portraits) don’t just hang on the wall next to each other… the SCAR girls hang out together. Many of them hadn’t met in person before the Cincinnati exhibition but you would never know that they haven’t been friends forever. Their SCARs have united them and bound them together, much like the stars and stripes wrapped around the girls in the portrait below. A picture is worth a thousand words, but I know many are curious about the story behind the photo of the four women draped in an American flag. I know, for one thing, because I sure as hell was. For another thing, people are always asking me about it. Since I was lucky enough to catch up with Amber at the Birmingham Exhibition I asked her to share the F*ck C*ncer Posse story here. Their story, is to the SCAR girls story, is to the sisterhood of this bitch that is breast cancer. It’s the club you don’t ever want to sign up for, but once you’re in it, you don’t want to leave. It’s a lot like Hotel California I guess;) Beyond all that, the story of the F*ck C*ncer Posse, is to The SCAR Project, is to the humanity that unites us all. Thank you Amber for baring your SCARs and your story.]

Kate, Em, Melissa, Amberaka The FC Posse

Kate, Em, Melissa, Amber
aka The FC Posse

When I was diagnosed with Breast cancer in June of 2006 I didn’t have anyone to talk to about it. I went to The Cancer Support Community to a support group made up of much older women. I was 34 at the time, and they were all well over 50. They were really great and I appreciated their encouragement, but I needed to talk to someone in my shoes. Someone my age.

Lucky for me, later that year I met Kate. It was a day I will never forget. I walked into the chemo room and was surprised to see someone my age. She was 35. Without any introduction she looked up at me and said something like, “Dang girl, how big ya going?”

I liked her immediately. I explained that my expanders were horrible. One was lower than the other one and you could set a beer on the shelf that was my left expander. I had to wear a very padded bra so you couldn’t see that mess which made me look like I was going for a size D on my size 0-2 frame. We ended up leaving the chemo bar (as my good friend and F*ck C*ncer Posse member Karson calls it) with my husband Steve and her boyfriend and went to have lunch. We started speaking on the phone regularly.

We had no idea that we had just started what would become a much larger group of young women with breast cancer in Knoxville, Tennessee.

In March of 2007 Kate and I met Melissa at a retreat for Breast Cancer survivors at one of our local hospitals. She had a hippie, music loving vibe to her and I knew we would be fast friends. Her nickname is Giggles. How can you not love a giggler? We started going to shows together and I took her to Bonnaroo while we were both still in treatment. Quite an adventure and endurance challenge. She is a dancing machine and so much fun to be around. We chat almost daily online and see each other regularly. We act a lot like sisters.

Not long after we met Melissa we met yet another Melissa, or Em, as we call her now. Both the Melissas are geologists. They both had friends volunteering in Africa who kept talking about a Melissa in Knoxville with breast cancer. They thought it was the same person but turns out it was two people with parallel lives. They arranged to have beers and catch a concert at a local bar. I met up with them and we talked, laughed, and danced our butts off. These days Em’s off teaching and finishing up her PhD in Oregon. We miss her a lot, but she came to visit recently, and we all got to ring in the new year with her. Of course it was a blast having the whole FC Posse together again.

Karson was next to be added to our Posse and our name derived from something her husband said. He was telling someone that he couldn’t or shouldn’t do something because his wife’s cancer posse would kick his ass. I’m sure it was something funny. Jason is a great guy and I wish I could remember what it was. We always said Fuck Cancer and so The Fuck Cancer Posse was born. Karson is now in the IV club, which means that she has stage IV metastatic breast cancer. Karson is an awesomely sweet, kind, and gentle soul. She’s our girl and we all love her!

Melissa, Em, Karson, Kate, Amber New Years Eve 2008

Melissa, Em, Karson, Kate, Amber New Years Eve 2008

Melissa had read the call for SCAR models on the Young Survivor Coalition page that David had posted. She contacted him and asked if we could do a group shot and he said yes. There were supposed to be 6 of us: Kate, Em, Melissa, Me, plus a couple more FC Posse girls: Karson and Brynn, who couldn’t make the trip to NYC for the photo shoot.

Two days before the 2008 election, we were in his studio taking our shirts off. David had the idea to drape us in the American flag. Three of us were not very keen on the idea for different reasons. But then he explained that we were on the eve of a very big election and he was hoping there could be a chance for universal health care. “Framing” our picture in that context, he said he wanted to show that here are these 4 women under 35 (2 under 30) in the greatest country in the world but there is no guaranteed health coverage for them. So we did it. And it is beautiful. (Thank you, David.) I’m so proud to be a part of it and to have these great women for friends.

Steve and I traveled to Birmingham, Alabama last week for the opening of The SCAR Project and The Alabama Project: The Civil Rights of Health Care at UAB’s Visual Arts Gallery. I was happy to meet new SCAR/BAMA sisters, and to see Vanessa, our SCAR sister that is in hospice care. Please check out The Live Sincerely Project and read Vanessa’s story, then take the pledge with The FC Posse to Live Sincerely.

I wish David’s wish had already come true and that we already had universal health care in place now. Strides are being made to try to get more coverage to more people in this country, but it is still not enough. To see these VERY young women struggling to get adequate care is infuriating. They deserve better. We all deserve better!

Amber, her SCAR/BAMA sisters, and David Jay

Amber, her SCAR/BAMA sisters, and David Jay
at The SCAR/BAMA Exhibition

We met Brigid almost 3 years ago when she joined The FC Posse. We became really good friends and she was my date for the SCAR Cincinnati opening. She has since become our SCAR sister as well. Brigid is sweet, lovely, a good listener, and a kick ass clothing designer.

Brigid

The clothing line Brigid makes, from tires, is as badass as her SCAR portrait. (But that’s another story for another day.)

No one really wants to join our Posse because you have to have cancer to be in it. But if you’ve got cancer, the F*ck C*ncer Posse is the group to be in. We’re all willing to chat with newly diagnosed ladies or gents, cook a meal or more for someone having surgery, give a ride to chemo or a shoulder to cry on. We raise funds and we throw parties. We do have “honorary memberships” for loved ones and caregivers. There are so many more great ladies in Knoxville (and beyond) that are part of our FC Posse like Sarah, Julie, Kristi, Brynn, our dearly departed friend Melissa who was our 6th Posse member, and there are many more… you know who you are. The FC Posse is always here for each other. The FC Posse has got each other’s backs. Click HERE to join the F*ck C*ncer Posse on Facebook.

Sincerely, the F*ck C*ncer Posse: Brigid, Amber, Karson, Sarah, Shannon, Kate, Julie, Melissa

Sincerely, Amber and the F*ck C*ncer Posse
(Brigid, Amber, Karson, Sarah, Shannon, Kate, Julie, Melissa)