[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.
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.
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.
[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!
[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.]
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 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!
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.
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.
[With The SCAR Project premiering in Birmingham this week, quite a few of the SCAR girls are heading south with the birds and tide…and the blazers for the cocktail party artist reception this Friday night at UAB’s Visual Arts Gallery. SCAR girl Sara is one of the many flocking together for the event. She worked out her pre-flight details in today’s guest post, which is also published on her blog: That Girl…tales from the edge.]
by Sara Bartosiewicz-Hamilton
This is my life…I had my implants removed mid-December…based on how I felt, I didn’t think I would be ready. At first, I thought I wouldn’t be ready because I would be self-conscious. After the fact, I thought I wouldn’t be ready because I wasn’t recovering as quickly. Either way, I thought I would not be going to the latest SCAR Project exhibit…and then…I woke up Friday with this urge. I wanted to be with my SCAR family…I wanted to see the photos…I wanted to be there. So, I texted my hubby who was getting off his 12 hour shift and headed to sleep in the parking lot of his barber until the shop opened…
I need an honest opinion of trying to go to Birmingham for a few days next week for the SCAR exhibit – I can’t explain it. I just feel the need to go.
And I just waited…I know I am spontaneous. I can change in a moment. Ahhh, such is life with me. The heart-warming part is the part where my hubby tries to understand, doesn’t always get there but has learned it is usually best to just let me go in whatever direction I’m trying…it may not work but NOT trying is usually worse. I was prepared for his opinion that this may not be best, I’m still not fully recovered…and, I had told myself, if this was his opinion, I needed to listen to him. Thankfully, he got home and told me to buy the ticket…do you know how quickly this can be done??? Within fifteen minutes, actually…flight booked, hotel called. And I’m headed to BAMA!!
This exhibit is a bit different – it started yesterday, the gala event isn’t until Friday. What this means? I’m not arriving until Thursday but am seeing photo after photo of the pictures being hung. I’m going NUTS!!! I just want to be there…I want to take them all in…each time is a little different, who is hanging, who they are hanging by. This time we have new photos and new sisters to welcome. I.can.NOT.wait.
So, I guess I’m doing a bit of my prep work here…online. And, I thought I would share with everyone else what this is like…in all sincerity, I truly believe EVERY single person in the world should be able to experience a SCAR Project exhibit because it is like no other. The photos grab you…meeting people…the love in the room…we love each other like family…the kind of family you actually want to be around. The SCAR models talk about the photos, we talk about our journeys but we really want to talk to you. What made you come see the exhibit? How did you hear about it? What do you think? Do you have cancer? Did you? Have you been touched by cancer? Maybe a friend…a cousin…your mom…tell me about your experience. Tell me what the photos mean to you from the perspective of your journey. It becomes one major love-fest and every single time I walk away blown away by the people I had the honor to meet and the stories I was able to hear.
The first exhibit, I was too nervous…I was welling up…and I am an ugly-crier. So, when the exhibit came to Cincinnati (still had to spell that twice to get it right!), I went to the gallery the moment I arrived. I thought if I was around the photos, I could get those emotions moving so I could be composed at the event. It worked. You know the feeling of coming home to your own bed after a trip? That’s the feeling I get when I walk into a gallery with the SCAR photos. I know the stories and the person behind most of the photos…I want you to love them as much as I do. But it also makes me reflect on my BRCA journey and the impact cancer has had on my life and in the lives of those I cherish…so it is a lot flying through my mind.
Those emotions are flying as I watch the pictures go up on facebook of the photos being hung in the gallery. The space is beautiful, as always. The photos grab me. I am “awww”ing at who is being hung by whom. I am wanting to reach out and touch the photo of my friend Gabrielle who was with me the day my photograph was taken…I am wanting to hug a SCAR sister as we look at Jolene’s photo.
I have never met or heard of anyone who was not changed by attending the exhibit.
I am incredibly excited. Can you tell?
People are never sure what to expect. I understand completely. Before the first exhibit, I was seriously stressed. What do I wear? What will it be like? Will I know anyone? I was grateful to have my youngest sister go with me and met up with two of my SCAR sisters who had their photographs taken on the same day so we knew each other. I didn’t even worry about my attire this time – I’m more concerned with every OTHER day since I haven’t figured out my summer attire with no implants…it is winter in Michigan so I can pull off a scarf every day.
Wear what you are comfortable in. You want to be in full on cocktail attire? You will fit in. You are more comfortable in jeans? You will fit in. Somewhere in between? You.will.fit.in. The reality is the photos take center stage and I don’t remember what anyone wears. Often times, I don’t remember what I am wearing until I start being tagged in photos. I actually changed into soccer slides last year because I had ridiculous heels on that I was not making it in. So, perhaps that is my one caution, wear shoes you want to be standing in for four or more hours. We’ll see if I’ve made the right choice this time.
|I’m not on the wall but I will sign
my photo in the book!!
I am so excited because a different sister will be joining me. Sharing this with those I love is like sharing one of the most sacred places of my heart. There is a bond with everyone in that room – I hope you are able to come. It is definitely not something you want to miss.
I will see you in Birmingham, Alabama!! (I am thankful I can spell this location without issue!!)
[If you are in the area, please be our guest at the artist reception Friday night. The event is free but please R.S.V.P. Click HERE for more info and to R.S.V.P. to the event.]
[Today’s guest post about The Alabama Project is by Cynthia Ryan. Cynthia is one of the co-producers of the upcoming dual exhibition in Birmingham, Alabama. The Alabama Project Exhibition will accompany The SCAR Project Exhibition at University of Alabama’s Visual Arts Gallery during its commemoration of the Civil Rights 50th Anniversary. Cynthia Ryan, Ph.D., is associate professor of English at the University of Alabama at Birmingham and a freelance writer. Check out her blog HERE. Besides all that, she also has been quite busy personally kicking breast cancer’s ass for the past 20 years. Namaste Cynthia. *Bows to your awesomeness* as I humbly hand you the microphone, the quill, the keyboard if you will. P.S. thank you.]
Guest Post by Cynthia Ryan
At 49, I’m twenty years into survivorship following my first bout with breast cancer. It’s been quite a ride, made all the more interesting since I joined The Alabama Project.
In September, David contacted me to ask if I’d be interested in writing about the experiences of five young breast cancer survivors from my adopted state of Alabama. He’d traveled to Birmingham and surrounding communities to photograph Leah, Brittney, Melanie, Whitni and Raquel, all diagnosed in their teens or twenties. These photos were different than the portraits associated with The Scar Project. They documented Alabama survivors going about their everyday lives, and all had stories to share regarding their unique journeys through the disease.
Taking on the challenges of survivorship day by day was an approach I knew something about. At 29, breast cancer became the backdrop to everything in my life. While existential questions about the meaning of life and death lingered, I had no choice but to preoccupy myself with the matters of surviving.
As many survivors will tell you, time and energy are swallowed up by the breast cancer experience. Visits to oncologists, surgeons, radiologists, social workers. Arrangements with family and friends for transport to said appointments and assistance with daily responsibilities as exhaustion and frustration settle in. Treasured downtime to heal body and soul.
By the time I reached 40 and a second diagnosis of breast cancer, my plate runneth over. Married with two daughters, 5-year-old Celia and 2-year-old Helena. A full-time job and pressure to keep on publishing. A new city and no extended family in sight.
It’s the getting through the everyday that challenges many breast cancer survivors and their loved ones and that, too often, gets relegated to the trivial. After all, we survivors are reminded to keep our minds on the big picture—completing recommended therapies, accepting a new normal, moving forward with our lives after breast cancer. Learning how to navigate the initial diagnosis and treatment plan and how to reach what lies beyond with our senses in-tact is far from peripheral, though. It’s as much a part of living as the promised restitution that may or may not become a reality for many of us.
Through the eyes of the Alabama women, I’ve discovered the kind of strength that every breast cancer survivor demonstrates both because she recognizes the importance of the life lessons the experience presents and because she must. Painful procedures must be endured. Bills must, somehow, be paid, with or without the grace of health insurance. Hope must be offered to our children. A new image must be confronted in the mirror.
[The Birmingham Exhibition will premiere January 7 and run till January 31. For more info, check out the press release HERE.]
FOR IMMEDIATE RELEASE:
THE SCAR PROJECT: BREAST CANCER IS NOT A PINK RIBBON
THE ALABAMA PROJECT: THE CIVIL RIGHTS OF HEALTH CARE
TO PREMIERE IN BIRMINGHAM, ALABAMA JANUARY 7-31, 2013
Birmingham, Alabama—December 6, 2012—Two groundbreaking photographic exhibitions shot by fashion photographer David Jay are set to premiere at University of Alabama at Birmingham’s Visual Arts Gallery: The SCAR Project: Breast Cancer Is Not A Pink Ribbon and The Alabama Project: The Civil Rights of Health Care.
The dual exhibition opens January 7 and runs through January 31, 2013. There will be a ticketed opening night gala on January 11, 5-9pm. General admission to the exhibitions, is free. Private gallery tours with photographer David Jay will be available. Regular screenings of Baring It All, the EMMY Award winning documentary about The SCAR Project will be shown throughout the exhibition.
The SCAR Project is a series of large-scale portraits of young women confronting breast cancer shot by fashion photographer David Jay. The SCAR Project puts a raw, unflinching face on young women and breast cancer while paying tribute to the courage and spirit of the many brave, young women fighting this disease. The SCAR Project subjects range in age from 18-35 and represent the often overlooked, group of young women living with breast cancer in our country today. They’ve journeyed from across America and the world to be photographed for The SCAR Project. More than 100 women have been photographed thus far.
The Alabama Project: The Civil Rights of Health Care is a subset of The SCAR Project. In this project Jay documents a group of young women in Alabama, all in their twenties, battling not only breast cancer but the healthcare system itself. From hospital room to the living room, Jay’s poignant images capture each woman’s faith, perseverance, and beauty.
Producers: Cynthia Ryan, Ph.D., Associate Professor of English, UAB Birmingham & John Thomas Fields, Interim Director, UAB Visual Arts Gallery.
Sponsored by: University of Alabama at Birmingham, Susan G Komen North Central Alabama & Susan Mott Webb Charitable Trust
Contact: Cynthia Ryan email: email@example.com phone: 205.934.8600
[It humbles me and is my deeply felt honor to defer this post to my friend/survivor sister/wounded soldier/and one of the newest SCAR girls, Barbie. I was at Barbie’s quite recent SCAR photo shoot. She is one of the three newest young women to be photographed by David Jay for The SCAR Project. By that, I mean UNFORTUNATELY… there are new SCAR photos… which is why we are doing this. The youngest of the 3 was 22. She was diagnosed when she was 21. Barbie was diagnosed WHILE IN AFGHANISTAN. I’m sorry for the all caps but again… this is why we are doing what we are doing. We must end this bitch of a disease. I think SCAR Project LA producer Diana Haye said it best: “Try fighting in Afghanistan, getting diagnosed with breast cancer, having a mastectomy, and then having the guts and fortitude to help raise awareness for other women baring it all and showing their scars…Barbie did.” And here’s what Barbie said, in this special guest post.]
The dog tags and camouflage are real. I am still active duty. I have been in for over 17 years and 2 combat deployments. In February 2011, I was diagnosed with Stage IIIB Breast Cancer, four months after being deployed to Afghanistan.
At my own risk, I wanted to participate in the SCAR Project because it is important to me that people understand and know anyone can get breast cancer. In my experience, it’s not something that’s often paid particular attention to due to the overwhelming male population. At some units, I was one of a few and, at times, the only female. We tend to think we are protected and immune to things because we are given a weapon, a FLAK jacket and a Kevlar helmet.
I spent most of my time taking care of the troops that were under my charge, a duty that most service members don’t take lightly. I would lay down my life for them. That’s what happened in this case. It’s just that the topography of the battlefield got personal, encroaching way beyond the borders of Afghanistan.
I wasn’t willing to accept the lump in my left breast that became obviously larger to me over the weeks that quickly turned into months. I sacrificed my own health and life as long as I could in order to stay and deploy with my unit. We had prepared and trained tirelessly for months and worked ridiculously long hours.
Leaving my troops and my unit behind was and still is harder to deal with than my breast cancer diagnosis. The feelings that I abandoned and deserted them and wasn’t able to ensure that they were safely returned home to their families will haunt me for years to come. This may be hard for many people to understand but that is the reality within my world.
Breast Cancer has torn me away from not just a career but a way of life that I loved and dedicated and sacrificed for. I am not going to ever get over Breast Cancer or move past it. I will live with it for the rest of my life.
I don’t believe most people actually “see” Breast Cancer. They hear about it but they don’t listen. It is just a terrible thing that happens to everyone else but could never happen to them. I hope that when they look at my photograph, they open their eyes and allow themselves to absorb and take it all in and really think about why this is happening to so many young women.
Everyone needs to understand the absolute reality of this disease. We have the power to speak up and make a difference. The importance of this goes deeper than just me. My whole family has inherited the Breast Cancer Gene (BRCA2). The fact that there is a great possibility that I have passed this gene on to my son and that my nieces are also at risk makes this whole fight worth it. Even if it is 5, 10, or 20 years from now, it could save their lives. It is my responsibility to preserve their future and ensure their longevity.
Every woman David Jay has photographed has their story. That is what makes this project so important. As different as we all are, we share a common bond. It connects us, and it reaches out to others, and connects them to us as well.
David Jay has given me the gift of allowing myself to be seen by others as I am now after being chewed up and spit out by cancer.
As awkward and uncomfortable as it may be for others to view, I am not embarrassed or ashamed. My young life has been rudely interrupted — and yet, I continue to forge on and accomplish things that others only talk and dream about. Perseverance, endurance, determination….these are the things that have been taught to me and instilled in me. I live in a world where giving up or giving in is not an option. Overcoming is the only way.