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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!

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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)

Can It Be Thursday…PLEASE?!?

[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.]

Cancer What?

[If you’ve seen the EMMY award winning SCAR Project documentary Baring It All by EMMY award winning filmmaker Patricia Zagarella, then you’ve already met the fabulous Sylvia Soo. She’s one of the fab four SCAR girls featured in the film. If you haven’t seen it… well… let’s just end that madness with the word “YET” —Ahem, if you haven’t seen it YET then it’s not to late! Just head over to your local Amazon by clicking HERE, then add it to your cart, press Proceed to Checkout, and voilà! Baring it All follows David Jay on an excursion from his life as fashion photographer into a world of young women scarred by breast cancer. Sylvia’s story, her absolute reality of surviving cancer as a young, beautiful, not to mention, fabulous, single woman, is not one most people would even think of when they think of breast cancer. For instance, Sylvia looks straight into the camera and says quite candidly, “How are you supposed to bring that up? Somebody asks you out on a date. Oh, by the way, I don’t have any hair and I have one breast.” Unfortunately, these days more and more young women are facing what  they, we, even many doctor’s, all “thought” was “our grandmother’s disease”.  That’s why The SCAR Project exists, that’s why David Jay takes their SCAR portraits, and that’s why these young women bare their scars. Sylvia and her sister SCAR girls face the camera the same way they faced breast cancer: with beauty, courage, style, grace, and fabulousness. Yes, it’s shocking to see breast cancer exposed like this, but… deeper than the shock… it’s inspiring to see what lies beneath the pink ribbons: S.C.A.R.s—not scarlet letters but badges of honor—these young women wear proudly and bravely bare in their SCAR Project Portraits. If that’s not cancer fabulous I don’t know what is. With that, I’d like to hand the microphone over to my fab friend Sylvia. Besides being fabulous herself, she manages the Cancer Fabulous web site where she encourages others to be cancer fabulous themselves, she’s working on a book called Cancer Fabulous Diaries, AND she has a short film called Dear Sister which is up for a prize for Rethink Breast Cancer’s Breast Fest coming up this November. All in a fab days work, yeah?! Anyway, please check out Dear Sister and vote for her fab flick HERE for the win! Voting ends September 14. So there’s still a few days left to stuff the ballot box for our Cancer Fabulous SCAR Sister Sylvia!]

Guest Post by the cancer FAB Sylvia Soo

I’d invited spoken word artist, Titilope Sonuga to perform at a charity event that I organized in 2010. She didn’t know me at that time, but by reading through my website’s (www.cancerfabulous.com) online diaries she was able to capture the essence of my motto “cancer fabulous.”

Cancer Fabulous

(written for Sylvia Soo)
By Titilope Sonuga

Be cancer fabulous
Be bruised battered
but never broken
down
fabulous
just be

carve a space
in this world
big enough
to love yourself in
even as they carve
through your chest
pump through your veins
wrap you in gauze
wrap yourself
in this
cloak yourself
in this
hold it up
like a shield
against your heart

impossible means
nothing to you

when the odds were
one in ten
one in a hundred
one in a thousand
you were that
one

that one who
clung to life
when it was easier
not to
dragged yourself
off bathroom floors
wiped the tears from
your eyes
last nights food
from your mouth
and did the impossible
refused to lay down
and give up
surrender or retreat

this is what beautiful
looks like

it is raw and uncovered
it is bald and stunning
it is twisted and tangled
It is a crocked line of scars
criss crossing
towards a heart
big enough to
love a nation

this is what beautiful
looks like

it is what exists
when we are broken
down past ego
or understanding
when we are faced
with a body that sends
distress signals
in the form of
a painless lump
when we are forced then
to cling to a soul
that refuses to
give up

this is what beautiful
looks like

So you bare your scars
for us to look upon
so that we can trace them
like maps
towards our own understanding

remind us that
there are no
treatments
for your smile

there is no
prescription
for laughter

there is no cure
for love

you remind us
what beautiful
really looks like

What beautiful really looks like

After reading the poem, one blogger wrote: “I honestly see nothing beautiful about cancer nor having to deal with it.” That blogger didn’t get it.

Yes, there is nothing fabulous about cancer. There is nothing fabulous about having your body scarred, having to take chemotherapy or puking in toilets. There is nothing fabulous about watching a loved one die. However, there is something amazingly beautiful and amazingly fabulous when someone goes through such hardship and turmoil with grace and strength. This is what cancer fabulous is about.

Perhaps it is media that has us thinking that cancer patients are weak, frail baldheaded aliens who are just waiting to die. These past three years I have met many inspiring people with such incredible spirit. These women are not ready to throw in the towel, but they fight for their lives. They have something to say. They are not willing to remain silent. Many of these women are subjects of the SCAR Project.

“There is something amazingly beautiful and amazingly fabulous when someone goes through such hardship and turmoil with grace and strength. This is what cancer fabulous is about.” – The fabulous Sylvia Soo

I chanced upon The SCAR Project during a 2009 Google search. I was 25 years old, and had just returned to Canada upon completion of an overseas contract. One week after I returned home, I was diagnosed with breast cancer. My surgeon gave me an option to choose a lumpectomy or mastectomy. Nights before my scheduled surgery I found the startling SCAR images, and I decided to have the mastectomy.

With one breast, I forged ahead with my summer. I stepped out into the chemo ward with my stilettos and I held my baldhead high. Time continued and the drugs began to take their toll on my body. I stubbornly mascara-ed the very few eyelashes that were left, and painfully slipped into my dignity. Those were challenging times.

While I was on-set of an independent movie, David Jay and I finalized my plans to fly to New York City and participate in The SCAR Project. Upon leaving set, I flew out to NYC. The photo that was chosen was a candid one (at the top of the page). I remember we were laughing at what someone said. I’m overjoyed that my picture does not depict sadness. My journey was much more than sadness.

These days you’ll find me working on my book, Cancer Fabulous Diaries, a collaboration with Rethink Breast Cancer; planning to become an entrepreneur in 2013, and always planning my next travel destination. Looking back on my life, I am amazed at all that I have been through, and excited for all that is to come.

Cancer Fighting Princess

[In my continuing series of guest blogs by SCAR Project participants, I’d like to introduce recently wedded Mrs. Bud Adams aka Melissa, the pink cowboy boot wearing Cancer Fighting Princess. I met Melissa at the SCAR Project’s world premiere in NYC in October 2010. This is a re-post of her guest blog for the SCAR Project Cincinnati Exhibition last October, but it seemed apropos to republish after Lauren’s “Breast Cancer is Not a Scarlet Letter” post. I think you’ll see why in her post and her beautiful SCAR portrait. Breast cancer leaves more scars than the ones on the chest, more than a pink ribbon can cover. This is the absolute reality of being a young woman surviving breast cancer. It’s my deeply felt honor and pleasure to know many of these young women, who have boldly gone where women hadn’t really gone before, in baring their S.C.A.R.s with such courage, dignity, and grace. In doing so, they share that courage with others confronting the same absolute reality of surviving cancer. And, they expose breast cancer for the wolf in pink clothing that it really is. The damsels are in distress, and it’s not just our mothers and grandmothers. Unfortunately, more and more these days, breast cancer is also picking on our girlfriends, sisters, even daughters. Damn cancer. Seriously. Let’s get serious and put an end to this damn disease.]

Guest Blog by Melissa Adams

I was diagnosed with genetic Stage IIA cancer on March 15, 2007 at the age of 31. I had invasive ductal carcinoma and ductal carcinoma in situ.

I found my lump on February 20th. Called my doc and was told to wait a week. Called back because it was still there and went in for an exam. The doc seemed to think that it was nothing and assured me it was not cancer (even after I shared that my great grandmother and uncle both had cancer—he said they were too distant!) But sent me for a diagnostic mammogram and ultrasound just to be safe. Those procedures were followed by an ultrasound guided needle biopsy, which by the way was the worst pain I have ever experienced in my entire life, still to this day. It took about 2.5 hours and I felt all 7 times they went in, despite being given a local anesthetic, twice. I bled for 6 hours after that procedure.

I got “the phone call” at work at about 8:30 on March 15th. The doctor who called me was one I didn’t know and hadn’t ever worked with—I work in a place where doctors frequently call my office so it never occurred to me who she might have been. She identified herself and the only thing I heard was “I don’t know how to tell you this over the phone.” I never heard her say breast cancer or you have or those two phrases together. I started screaming and crying even though I had spent the last 3 weeks researching, preparing myself, and convincing myself I would not be devastated. I was devastated anyway. My world turned completely upside down.

I don’t remember much of the day or the weeks ahead to be honest. I had an all day run at the hospital on March 21st where I met with surgeon, geneticist, and had a bunch of tests done. I was tested for the BRCA1/2 mutation—found out that there is a lot of cancer on the biological paternal side of my family. In fact, I am BRCA2 positive and as if having cancer alone wasn’t devastating enough, I got that punch in the face because it came from a biological “father” who has never had anything to do with me my entire life. I was able to joke about it though and told everyone that it confirmed that I’m a Teenage Mutant Ninja Turtle.

My surgeon recommended complete removal of the right breast because it could not be preserved with all of the cancer in there. She recommended removal of the left given the mutation. I had my bilateral mastectomy with immediate reconstruction on May 3rd (my step dad’s birthday). I opted for implants though I had been so against it from the beginning. During the surgery, the doc discovered that my margins were not clean and had to remove additional tissue down toward my upper abs and pectoral muscle but the margins were still not clean.

Though I was initially told I would not have to do radiation, it turned out that when they discovered the unclean margins, the radiation oncologist recommended I do it (by the way, it is not common practice to do reconstruction prior to radiation). So I was “pumped up” on the fast track plan…from about June until July and then on July 16th (day before my birthday) I had my expanders swapped out for the implants. I underwent 30 rounds of radiation therapy, which caused significant damage to my right implant. I suffered from capsular contracture, which is hardening of the implant, and I was lopsided! I had to wait to be out of radiation for 6 months before I could have my next surgery to fix the damage.

On May 8th, a year and 5 days from the one-year anniversary of my first surgery, I had surgery to remove the latissmus muscle from the right side of my back to bring it around and recreate my right breast. I had to have expanders put in again and went through the “pumping up” process all over again. In August 2008, I got my new and improved foreigners (that is what I call them).

Since I’m a BRCA2 carrier, I go every 6 months for ovarian cancer screenings.

This year of all years has been the most challenging for me. In January, they found something that appeared semi-solid on one of my ovaries. My CA125 levels had been in the normal range previous to this but had nearly doubled.

It was and always has been recommended that I have my ovaries removed but I’m not mentally or physically ready for that.

I went for a 2nd opinion where they scanned my entire body. They discovered an area of uptake on the CT Scan on the right side of my implant. In additional scans to continue to monitor, they also discovered on the CT Scan that I have a dilated aorta and come to find out that I have a significant history of heart disease on my mom’s side of the family. Now I see a cardiologist for that. So that is my story and where I am with my health.

I found out about the scar project through the online Susan G. Komen forum. I had emailed David Jay a few times about the project. I decided to participate because for me, from the get go, I knew this would never be about just getting through it. I whole-heartedly believe that I was meant to do something with this experience. My goals in life have always been to change a life, make a difference, and touch a heart. I never imagined I would have to get cancer in order to do that but that is just what happened. So I wanted to put myself out there as another young face of breast cancer.

I emailed David Jay so many times because I looked at his site and saw that all of the women had taken pictures with their shirts off and exposed their breasts. There were multiple reasons that I wasn’t willing to do that. One is that I work in public education and though this project is considered educational, I wasn’t willing to take the chance on losing my job over it. Even if I didn’t work in public education, I still wouldn’t have exposed my scarred breasts to the entire world. Up until very recently, no one other than my doctors had seen me without a shirt on. For the first 3 years or so after the reconstruction I could never look at myself. I would purposefully step away from the mirror when I was getting undressed. I think it was a lack of acceptance that this was my reality.

I can recall the day that I undid my dressings after my first reconstruction surgery. I was at home by myself recovering from the surgery. I decided to take a shower but before I did, I wanted to look. I undid the dressing and was completely devastated at what was before me in the mirror. I screamed and cried. I sobbed the entire time I was in the shower. I didn’t even know what to do with myself. I cried for hours and hours after that. One of my best friends had tried calling me that day and couldn’t get in touch with me. Finally, he decided to just come over and found me sitting on the back patio sobbing. It was probably the lowest point I had during my journey. All along all I ever wanted was to have “me” back. I have come a long way from that point but I still struggle with it, as many other women do.

This is what I wrote on my caringbridge site last year after going to the exhibit:

Before we even walked into the exhibit, I was overflowing with emotions. It is hard to explain what it felt like to look through the window and see my picture hanging on the back wall. There were a thousand emotions running through me…it was bitter sweet in so many ways. As we were doing the gallery walk, I was in tears. At one point, David Jay asked if anyone wanted to lead the gallery walk and Flora so kindly selected me. I, of course, went over to my photo. David Jay asked me to share a little bit about my story and so I did. I was crying the whole time. It was hard to look at my photo but at the same time, I couldn’t stop. It was hard looking back into the crowd and seeing my friends with tear-filled eyes too. There were several other girls that took part in the project that shared their story as well. At some level, it brought a sense of closure for me to that part of my life. I wasn’t sure I would have ever been able to look back at that photo and not see it as something that had complete control over my life but I was and I was filled with a sense of relief that finally I can move forward from that dark place.

I am hoping that this project is an eye opener for everyone…particularly anyone that seems to think that mammograms should be conducted once a woman turns 50 and for anyone that thinks self-breast exams and mammograms don’t save lives. We are all faces of proof against both of those ideas.

It is overwhelming to see my photo as a part of this exhibit. It almost seems surreal at times. Last year my photo was used for an article on AOL health and people were calling, texting, and emailing that they had seen my photo.

I was single when I was diagnosed with cancer. Had never been married and wasn’t dating anyone. I was convinced that no man in this world, especially my age, would ever be interested in me because of the breast cancer and because statistically I’m at risk for recurrence or ovarian cancer. I remember standing in my office at work talking to 2 of the secretaries about my upcoming mastectomy and was crying as I asked them, “Who is going to love me now?”

At some point along my journey, I had accepted this and seemed to be somewhat okay with it. On May 6th (the one-year anniversary of my lat surgery) I met Bud.

Bud and I hung out several times and eventually started dating. He bought my engagement ring on February 20, 2010 (the three-year anniversary of the day I found my lump).

We got engaged on May 17, 2010 and married on July 16, 2011. For me, it was a bittersweet day because it was the anniversary of one of my surgeries…but…it was also the day I married my best friend.

I never saw this day coming because had lost all hope that anyone would ever love me after all that I had been through. I had chalked it up as one more loss to the cancer. But then I met Bud. He loves me unconditionally. Never once did he look at me as the girl with cancer, he always saw me as just Melissa. He taught me that I am worthy of being loved but more important than that, he helped me in the process of learning to love myself again. Even when I told him early on (before we were officially dating I believe) that I would never have children because of the 50/50 chance of passing it on to my child, he still pursued me. There have been times when I feel as though he deserves so much better because he is such a great guy…he should be with a woman that has her real breasts, someone that doesn’t have to eventually have to have her ovaries taken out because of the risk of additional cancer, someone that doesn’t have such a high risk of recurrence or other cancers, and someone that can/will have children because he would be a great dad. But he loves me for me and wouldn’t give me up for anything.

Bud and I founded Cancer Fighting Princess in October 2009. It started out as a conversation, about me and about having a web page about my experience. He asked what I would call it and I said “Cancer Fighting Princess, duh!” From there evolved the idea to start a charity. We have decided to focus on supporting young women currently undergoing treatment for breast and/or any gynecological cancer.

Breast Cancer is NOT a Scarlet Letter

[I met today’s guest blogger at the first planning committee meeting for The SCAR Project DC exhibition. I was instantly drawn to Lauren, not just because of her striking though gentle beauty (as you can see in her SCAR portrait below) but also (as you will see when you read her story) because she is a kindred writing spirit. Since getting to know her something else that really puts the L in Lauren, methinks, is best summed up in some lyrics she posted recently on Facebook: “Until the referee rings the bell/Until both your eyes start to swell/Until the crowd goes home/What we gonna do y’all?/Give em hell, turn their heads/Gonna live life ’til we’re dead./Give me scars, give me pain/Then they’ll say to me, say to me, say to me/There goes the fighter, there goes the fighter/Here comes the fighter/That’s what they’ll say to me, say to me, say to me/This one’s a fighter.”* Which is summed up perfectly, methinks in the slideshow I’ve added at the end of her guest post.]

Guest Post by SCAR Girl Lauren

Image

As a healthy and active young woman, I was under the impression or, in hindsight the delusion, that I was impervious to life-threatening illnesses or events. I simply believed that if I worked hard and was a good person that life would reciprocate in kind. So when I was diagnosed with breast cancer in September 2009 at age twenty-eight, while my husband was on his second tour in Iraq, you could imagine that my naive “vie en rose” attitude quickly shattered. I was left asking the question “why?” Why had this happened to me given that breast cancer is considered an affliction of the post-menopausal woman? Had I done something wrong during my early years (an occasional drink too-many in college) or did I have some genetic component lurking in the family pool that I didn’t know about? But like so many women slapped in the face by cancer, I didn’t have much time to dwell on these feelings. A bilateral mastectomy on October 16th quickly made me realize that shitty things can happen to good people and that there was simply no rationale for it.

Looking into the mirror for the first time after my surgery was a truly humbling experience and visually captured, for me, what “surviving” cancer really meant. That whoever I once was, I would never physically be again, that my new corporeality was an altered one that I would have to get used to. Removing the gauze pads revealed swollen water-filled pseudo breasts and bruises around my incisions. I no longer had nipples, but in their place I had angry looking scars. The one on the right ran the length of my breast and curved up toward my armpit in a smirk, a fitting visage for the “diseased” betrayer of my body. The left breast had a small straight line, like a mute partner guilty by proxy. I also had drains protruding from under my arms, the bulbous grenade portion of which was cradled in a little fabric belt that was slung around my waist. I felt alien, ugly and more like some macabre B-movie octopus than a woman.  As I inspected myself in the mirror, my husband drew warm water in the pink plastic basin they sent me home with from the hospital. He gingerly took the washcloth, soaped it up and helped to bathe me and wash my hair. I didn’t have the energy to do it myself.

I couldn’t believe the spectacle I saw reflected back at me and I began to cry. I never had to depend on anyone for this kind of daily activity and yet here we were. I get that in our marriage vows we agreed to be there for one another in sickness and in health, but I never imagined that we would test the theory when we were so young. Extremely self-conscious, I wondered how Mark felt to see my body reduced to something unfamiliar and bizarrely reconstructed. How could he find me attractive anymore when I was so changed, having lost those attributes which society deems so intrinsically feminine and esthetic? While such thoughts may seem superficial, addressing the feelings surrounding the physical alterations of my treatment really forced me to reexamine who I was aside from societal standards of beauty and worth. And though it has been a long and particularly emotional struggle to come to terms with my post-cancer body, what I’ve learned on my expedition through illness has been liberating and transformative – especially when it comes to David Jay’s The Scar Project.

I randomly navigated to the website one afternoon, curious as to what breast reconstruction looked like for other women my age. The first portrait I came to was this stunning image of a pregnant woman with a deep scar in place of her right breast, her fair skin radiantly contrasted against a dark backdrop. I remember how strong and unapologetic she looked. “This is who I am” she seemed to say to me from the screen of my laptop. At that moment, hope blossomed. I, who have yet to have children or to learn if that’s even feasible at this point, could now imagine the possibility that cancer had not usurped the opportunity of motherhood from me because there was Emily, as bold and brave as an Amazon, defying cancer and not only living life but creating it too! Her strength and courage, along with the photos and stories of other SCAR models (a shout out to Vanessa, the two Saras, Eliza, and Barbie) have inspired me to participate in the Project so that I too can do my part to increase awareness of young women’s vulnerability to breast cancer.

I consider it an honor to be a SCAR model; that photo shoot with David meant so much to me. For the first time in a long time, I felt beautiful and actually portrayed as who I truly am. I’ve since realized that my scars are not damaging scarlet letters of disease and imperfection so much as they are physical testimonials of my journey upon this earth. My experience with The SCAR Project has not only facilitated the acceptance of my wounds (physical and emotional) to find the beauty, grace and peace from within, it has also allowed me to transform my breast cancer into something powerful that will impact others. Whether that means showing young women with breast cancer that they are not alone in their experience or illustrating what reconstruction can look like – it definitely affirms that the reality of breast cancer has nothing to do with pink ribbons, commercialism, or walking until doomsday. All you have to do is look into a SCAR model’s eyes to grasp what reality is for the women photographed and to sense the collective frustration that we need to find a damn cure already. While I love my fellow SCAR sisters, there are already too many of us (including women in their teens, early twenties and thirties we’ve lost to this disease) for society to maintain the status quo of what they call breast cancer “awareness.”

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Breast Cancer Is Not Politically Correct

When the international SCAR Project exhibition premieres in Washington, DC this October, kicking off Breast Cancer Awareness Month 2012 from our Nation’s Capitol, the timing couldn’t be more perfect if it tried.

Besides pulling the proverbial pink carpet out from under October, the DC exhibition is also smack dab in the heat of election season.

“In the end, by bringing The SCAR Project to our city, we hope to make a strong statement about breast cancer by showing our country what it really looks like,” said Donna Guinn Kaufman, breast cancer survivor, former vice-president of the Tigerlily Foundation (supports young women before, during and after BC) and founder of the Kill the Cancer Beast Foundation (empowering people with cancer to fight), the organization spearheading production of The SCAR Project DC Exhibition. “We hope that The SCAR Project will change the way that people look at this disease, seeing it for what it is, terrifying, disfiguring and deadly, and as such, take real action to end it.”

Last month Kaufman and her planning committee of mostly survivors and previvors kicked things into high gear toward that end at their SCAR Project DC Exhibition Kickoff Fundraiser which was held at The Dunes art gallery. (Thank you for your gracious hosting of the event, Deidree Bennett, Fine Arts Director at The Dunes.)

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(Thank you to all the photographers who covered the event: Kipp Burgoyne, Marcus Bennett, Diane Crawford, Joey Darley, and Mayrev Mary Goren for all your lovely photos. And a special thank you goes out to Kristen Berset, WUSA9 sports anchor and reporter for her graceful emceeing of the event. Also to WUSA9 weekday morning anchor Andrea Roane for her gracious support of The SCAR Project DC Exhibition.)

If I were writing notes on cocktail napkins during the SCAR DC kickoff fundraiser, here’s a few of the highlights I’d have scribbled down:

Breast cancer is a political issue – SCAR DC Producer Donna Guinn Kaufman

Breast cancer is not prejudiced – SCAR girl Heather Salazar (caucasian) adopted her friend’s daughter after her friend (African-American) passed away from breast cancer. Then Heather was also diagnosed with breast cancer.

Breast cancer does not wait until you are “old enough to get breast cancer” – SCAR girl Eliza Hewitt who was diagnosed last year at age 22.

Breast cancer does not care if you are in a wheelchair because you already have Cerebral Palsy. – SCAR girl Sara Boghdan.

Breast cancer is not very patriotic. – SCAR girl Marathon Barbie the Marine who was diagnosed while serving our country in Afghanistan.

Breast cancer does not play fair. -SCAR girl Darcie who shared recent news of her breast cancer’s progression. (Cheers to your health, love, and godspeed beautiful Darcie, as you strive for stable disease once more.)

Breast cancer may SCAR but it does not define those who’ve stared down its ugly face and face their own absolute realities of surviving cancer. And yet, get a bunch of these crazy ass kicking cancer chicks in a room together sharing their SCARs and all I can say is cancer better watch out. One of these chicks is a marine and the rest of the women in the room have her back.

With that said, here’s the drill for the SCAR Project DC Exhibition:

Monday, October 1, the first day of National Breast Cancer Awareness Month, Kaufman is organizing a “Young Women Surviving Breast Cancer Day on Capitol Hill.” Kaufman is arranging meetings for any young women who can make the event to meet with their Senators and Representatives while young women in SCAR DC  t-shirts deliver invites for The SCAR Project DC Exhibition to members of Congress and and their staff on Capitol Hill.

Monday evening, The SCAR Project DC will host a VIP Reception/Press Conference by invitation only from 6:30 to 8 p.m. to kickoff the exciting week of DC Exhibition events and introduce The SCAR Project to the nation’s Capitol.

The DC Exhibition will open to the public the same day Monday, October 1 and will run until Sunday, October 7. General admission hours will be from 10 a.m. to 10 p.m. (except for during ticketed gallery tours with the photographer, Monday evening VIP Reception/Press Conference and Thursday evening’s Black & White Opening Night Gala). The price of general admission is FREE.

There will be daily gallery tours with SCAR Project Photographer David Jay, and when possible, various SCAR girls will be available for Q&A. Stay tuned for a schedule of gallery tours TBA.

A Black & White Opening Night Gala will be held on Thursday, October 4. Tickets must be purchased in advance on the Eventbrite link below. A special discounted price is offered for a pair of tickets purchased before September 1. Also a special “Buy a Ticket for a Survivor” at a discounted price is offered so no survivor who wants to go to the gala is left behind.

On Friday, October 5 after the gallery closes for the day there will be a special ticketed After Hours Party with the SCAR crowd.

On Saturday, October 6 Emmy Award-winning filmmaker Patricia Zagarella will be on hand for a special screening of her EMMY Award-winning SCAR Project documentary, Baring It All. Zagarella, David Jay, and a few of the SCAR girls will be available for a Q&A session afterward.

Tickets for all events are now LIVE  on Eventbrite-Click HERE.

For more info and/or to keep posted on The SCAR Project DC exhibition join The SCAR DC Facebook Group. Contact SCAR DC Producer Donna Guinn Kaufman at dgkaufman@killthecancerbeast.com or 703.489.2727.

Anomaly Yours, Eliza

[I met today’s guest blogger at her SCAR photo shoot in DC this past spring when the cherry blossoms were all abloom and decking out DC for its annual festival. How. Very. Apropos. Methought as I watched this beautiful, courageous, WAY TOO FREAKING YOUNG woman bare her S.C.A.R.s for the camera. At first glance, Eliza’s bright blue-eyes distracted me from the fresh red “angry scars”—as she calls them. Her absolute reality of surviving cancer is as different from mine as my scars are from hers. Mine have faded a bit, as I’m a wee bit (ok, OK… she’s exactly HALF my age but TWICE me in wisdom and stature) older than my younger survivor sister. Mine look more like Japanese symbols for WTF? and are therefore not nearly as angry—though I definitely see red when I see hers. I’ve read before that “the fragility of the cherry blossom is the fragility of human existence.” This was just poetry before I met Eliza. She is currently the youngest of the SCAR girls. Eliza just finished grad school in May and turned 23 in June. Oh, and is planning a wedding. While fighting cancer in her spare time, after being diagnosed earlier this year at twenty-freaking-two. She calls herself an anomaly. I just call her awesome. As I’ve gotten to know Eliza I’ve come to see that beneath that beautiful pale skin is fierce hope unfading, which the sunlight dancing upon it only highlights.]

Guest Post by Eliza Hewitt

 

Eliza and Thomas at graduation… and they’re off… planning a wedding for sometime next year… once she’s finished her Ph-freaking-d in chemo and radiation.

First of all, I should probably state that I’m only 23, a fact that I hope will shock anyone who feels that they are too young for breast cancer. Before my diagnosis, I was your average grad student working four or five jobs to avoid going further into student loan debt and working out the plans for the wedding of my dreams.

The discovery of my cancer has a tragically humorous story behind it. July of 2011, I decided I was fed up with my breasts. They hadn’t grown since middle school so I resolved I would subject them to a breast augmentation surgery. With a coupon for a free consultation in hand, I dragged my fiancé to the plastic surgeon’s office. I remember seeing a placard addressing the office’s policy on insurance covering the surgery if it was for reconstruction. So, as I’m sitting there waiting to meet with the doctor about a boob job, I remark to my fiancé, “Man, wouldn’t it would be great if I got breast cancer because then I wouldn’t have to raise the money for this boob job?” BOOM. There. There’s the awful punchline. I was a baby then and had no idea that the idea I said in jest was really a terribly callous joke that would come back full swing five months later.

Sitting on the exam table, the doctor found a pin prick of a lump on my right breast. He raised his eyebrows and asked if I knew about this. A part of me was embarrassed that my body could have something that could prevent surgery, especially since my regular doctor had not found anything during my annual visit two months prior. So I lied. “Of course, I know what that lump is,” I said. He told me to get it checked before the surgery plans could progress. I said that I would but already my mind was thinking that I would have to get back to work. Besides, I was 22. The world was at my feet and it was probably some dinky little cyst that would fade back into my body eventually.

So I sat on my knowledge of the lump for five months.

I filled my schedule with work and classes to avoid having to think about what the lump could be. In December of 2011, I had an unrelated surgery on my tailbone and a few days later, I started finding blood in my bra. Then, my skin felt hot and I noticed that the lump felt bigger. Oh no. Now, I’m going to have to call my doctor and admit the truth and growing evidence in my boob case.

Five months. It didn’t seem like a big deal.

In the end I couldn’t face telling my doctor’s office that I had avoided getting my lump checked out and now my boob was being weird, so I turned into a five year old and asked my mother to call. As she was describing my symptoms, it began to sink in how idiotic it was to think if I avoided something that it would go away. I call it the Ostrich Solution to life’s problems.

Five months. Is. A big. Deal.

The urgency in planning an ultrasound and then an ultrasound guided biopsy on the same day told a story that sent chills up my spine. When the technician slid her magic wand over my right breast, I thought someone had dropped a river pebble in my screen. There was a big black blob smack dab in the middle of my screen and I knew then that it was cancer. It had to be because nothing else can look as sinister. A week later, we got the official news. At 22 years old with classes to pass and weddings to plan, I had breast cancer. It was triple positive, meaning that it loved estrogen and progesterone and for dessert, it was partial to HER 2.

A week after my diagnosis, I had a bilateral mastectomy. I was my breast surgeon’s youngest patient. The night before my surgery, I wanted to see mastectomy scars. If I was going to have to wear the scars for the rest of my life, I wanted to know what I would see in the mirror. What I found was The SCAR Project. With each picture, I found stoic, resolved women who dared me to think them weak or pitiful because of their scars. These women were above their diagnosis and I took heart seeing their strength, even as my soul cried for all the beauty affected by breast cancer. It helped me through the night,  the surgery, and the breast surgeon’s finding: because of lymph node involvement, I was upgraded to Stage 2B.

A few months later, I fell into a deep recess of my former life and couldn’t bear looking at myself without the mirror being entirely fogged up. I emailed David Jay, never daring to hope that he would respond back. I had just gotten involved with the movement to bring the SCAR Project to DC and felt that my contribution would be in the background. I was satisfied knowing that I would help in this way. But David did email me back and the world opened to me again. He asked if I wanted to be photographed. I cried when I thought that anyone would want to take a picture of my scars that I despised even if they meant I was surviving. Here, my poor body was doing all it could to surmount the effects of chemotherapy and I could only see them for what wasn’t there.

When I met David in DC, I could barely breathe from the expectation that he would change his mind because as a 22 year old, I felt I should have had a youthful, unabashed spirit that wasn’t facing a life threatening disease. Had I never been diagnosed, I might have felt like a model off to a photo shoot.

David told me my scars were beautiful. At first, I rejected this thought thinking maybe he couldn’t see how harsh they looked in the light. But as he took picture after picture, I started to realize that my scars were nothing to be ashamed of. Yes, they made me different from other women my age, but they also made me more resolute and strong like all the women who had photographed before me and given me strength the night before my surgery. It is still hard to look at myself sometimes. I would be lying if I said the opposite. But through my picture and my involvement with the DC exhibit, I have made peace with myself and my scars. Because our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but living.

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Follow Eliza’s Adventures With Cancer aka her blog HERE.

Check out the story the NV Daily did on Eliza HERE.

Born to Laugh

[When I first saw my friend Sara’s SCAR portrait it immediately rendered me at a loss for words, which is not an easy thing to do. I mean, I may be crazy shy, but I typically have at least 23,587 words on the tip of my tongue at any given moment, all raising their hands like Horshack, screaming out: “Ooh ooh choose me!” However… they all stood still like they were playing the quiet game or something when I saw Sara’s SCAR portrait. I. Love. the Beauty. And the Bold. Which bursts forth from her picture like it’s rolling on the floor laughing out loud, and maybe even peeing a little, IN THE FACE OF CANCER—and—Cerebral Palsy, to boot. That’s how badass Sara B. is. And that’s why I couldn’t wait to finally meet her in person at the recent SCAR Project DC kickoff cocktail party. And that’s why I can’t wait till you get to meet her here as well. And that’s why I’ll just sit down, maybe grab a cup of espresso with a shot of Baileys, and let her hijack the blog today and tell you her SCAR story in her own words. With Sara’s permission, this is a repost from her blog, “Ready, Pink, and Able” which you can check out and follow HERE.]

Guest post by SCAR girl Sara B.

Exhausted. Actually, I’m in the spacebeyond exhausted.

That’s what I feel. I have been worried about this shoot and its implications for 3 weeks. I want to share the experience, and at the same time, keep special moments for my heart alone. I don’t really want to talk about the experience, and have been telling my friends that they have to wait until I’m ready to talk. The only reason that I’m blogging so soon is that I’m afraid that if put off, it’ll never be done.

Photo courtesy of Colleen Roche

What can I say about this day? I had a nightmare the night before about breast cancer and mastectomy scars, and then I shook for the longest time, I didn’t think that I would see the end of this day. I kept hoping that David Jaywould call me and cancel. I’m not that strong. Didn’t feel brave –just annoyed, fearful, and worried. I also knew that I wouldn’t back out of it; I see things through to the end. When I make a commitment, I believe in keeping it. It’s just the way I was made…When I’m in, I’m all in.

When David got here I announced, “It’s ME!!” He replied, “I know!!” as he kissed me on my cheek. OK. All ice melted at that point. David did his thing as he looked around, and I just tried not to faint or vomit.

Congratulate me. No fainting or vomiting!! AND you’ll be amazed. Taking off my top was pretty easy. I am NOT kidding. When it was time to take that part of this journey, I was ready. Who knew? Well, David did! He told me repeatedly over the last weeks that it would be fine. He was right. However, it was much more than fine. I was brave and David was patient. He knew how to wait for honesty. He waited for me and fearlessly took the shots. It was a privilege to be part of those moments. That shawl slipped down so many times; I didn’t worry about it. I was completely at ease. I accepted myself.

Breast Cancer is a serious subject. It’s a beast. It stole my breast. I didn’t convey any of those things during the journey that David and I took together. I laughed. Yes, I know. I’m just different. I laughed…and laughed…and laughed some more. I thought about it, and started to panic every so often during the shoot. I thought, “I shouldn’t be laughing. Breast cancer is a monster. Sara, don’t laugh.” Then, I would try to swallow the laughing and look to the camera. It was so unnatural! You can’t be yourself while you’re trying to swallow who you really are. The truth is that while breast cancer is horrible, and I have grieved the loss of my right breast, I don’t live in that place in my heart. The truth, if I’m really honest with myself, is that Sara laughs…she enjoys the freedom of laughter. I really do embrace my faith which tells me that I have been made in the image and likeness of God (Gen 1:26). David, in his wisdom, just said, “It’s OK to laugh, go ahead.” Those moments, when David gave me permission to be happy…honestly joyful, those were my favorite.

“I was born to laugh. I learned to laugh through my tears.”
-lyrics from “Born” by Over the Rhine.
Check out a link to the song HERE.

If you’ve read my blog before, you remember that I’ve said that I never thought I would reveal myself in an intimate way to any man outside my spouse (if I ever marry). I just know instinctively that I can only be vulnerable like that if I’m in the presence of love. That is still true. The shoot didn’t change that at all. You see, when I looked at David’s face, I saw love reflected back to me. Now, make no mistake here. There are many different shades of love. I’m not in love with David nor he with me. (Although, I can certainly understand why women would fall for him.) The love that I saw in his face was his humanity truly connecting with mine. I know I didn’t imagine it. It’s probably one of the most wonderful times of my life. It brought tears to my eyes later. I had been loved, and not in any way that I expected. I never thought that I would meet a fashion photographer, let alone that I would find love in his face. Yet, it really happened. In fact, the love in that room helped me survive the moments in between the shots, when I needed to wait for my muscles to relax. I couldn’t stay in the same position for very long, and I just begged to be allowed to move. Cerebral Palsy is betrayal of the highest order. My body’s movements and spasms are often not voluntary, and pain is a frequent albeit unwanted guest.

The only troubling part of the afternoon happened when we finished. I sighed and exclaimed,”We’re done, and I’m never doing that again!” I was wholly unprepared for David’s response. He explained that if he didn’t get what he wanted in the shots we had, then we would shoot again. Umm…David…I never said that I would agree to do this again. My heart sank through the spokes of my wheels. I was convinced that he must not have gotten what he needed. I had let him down. I had let all people with disabilities down–never mind myself and the two friends who were present. Talk about pressure. Let’s be real. We had an incredibly talented photographer and we had me. If one of us had ruined the shoot, who would you bet did it?

OK. so it’s all moot now. Just look at his photo. Look at the abandon with which I threw back my head. Breast cancer took my breast, and it very well may take my life someday. It will never own me. I am free. Thank you, David, for being my witness.

Sara with SCAR photographer David Jay at the recent SCAR Project DC kickoff cocktail party (photo courtesy of Koryn Hutchison)

“Breast cancer can kiss my…gorgeous, full laugh! So there.”
-Words to live by, by our very own Sara B. aka the silliest coconut EVER

Jolene’s SCAR Story – Part II

To be so young and yet to have made such a splash and so many ripples of love.

[I didn’t want to leave Jolene’s story at the addendum from the previous post… because, although we know the end of her cancer story and that she is resting in paradise—as her brother puts it, or causing chaos among all the angels—as one of her friends posted on her Facebook wall . . .  Jolene’s story is far from over. Her SCAR portraits, her memory, her mama, all those of us who love her, and Flat Jolene, continue kicking cancer’s ass and taking names, fighting like our girl Jolene. In other words, she made some ripples down here while she was with us. I like to think it makes her twirl with delight to watch all those ripples of love she created making the universe feel like it’s a small world after all. While we can only sit here star-gazing—and surely Jolene is on the tip of the archer’s bow as he aims for that damn crab—Jolene is. still. making waves. But you, savvy reader, I know you already knew that, because you have caught a glimpse of our lovely Jolene. Plus, I figure you caught the “Part I” in the title of the previous post, and therefore caught on that there was going to be a sequel. So without further ado, here is Part II, written by Jolene’s (and my) dear friend Mary Carpenter. Thank you, Mary. You make pretty ripples too.]
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Mary star-gazing.

The Gifts We Leave Behind
Guest post by Mary Carpenter
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If we are wise, we live a life that fills not only us, but those with whom we share it a trunk full of memories. Sometimes we are not wise, though. Sometimes we are frightened and we hide from the pain, uncertainty, fear, and loss. We crouch in the darkened corner believing that we cannot bear one more trauma in our lives. And then, light peeks through the curtains and tiptoes over to that corner and taps us on the shoulder. It beckons us to draw the curtains open and embrace the sun that warms us . . . the clouds that make us dream . . . the rain that nourishes us . . . the wind that bends us . . . and live the life that awaits us.
Jolene did just that. She flung back the curtains and opened wide the window that brought her into my life and the lives of many others. She left not just a trunk filled with memories, but a garden filled with gifts for those she left behind.

Jolene (on the right) next to her lifelong friend Star

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Jolene began planting the seeds in her garden as a child. Perhaps then she wasn’t mindful of the seeds she was planting. She was just being herself… genuine, kind, considerate, loving, and funny. All of those attributes continued nourishing her garden as she and it grew and blossomed. Then the storms began to blow through Jolene’s life and she learned to bend with them gracefully instead of break. Those storms scattered more seeds throughout Jolene’s garden as the dew dripped from her petals and she was courageous enough to share them with us.
When the blades of the gardening sheers cut her stem, she found solace in a garden of flowers who had met the same storm called Phyllodes. Together, they nourished one another and strengthened each other’s roots. They, along with many other flowers who had been caught up in the cancer storm cultivated the soil of friendship in the garden.

Jolene surrounded friends and family

In the last few years of Jolene’s life, she was awed by the gratitude of these flowers not realizing it was they whose soil was most enriched by all she taught them with her honesty and appreciation for even the minutiae of life.

Her wit and charm endeared even the weeds to her, but she would not succumb to their negative forces. She continued reaching for the sky and striving to make something beautiful out of the storm that became a hurricane; sometimes subsiding, but never completely diminishing. She opened wide her leaves and petals to share the remnants of the storms’ damages with the world as part of The Scar Project. She wanted the spotlight of the world to shine down on this garden and see that not one ribbon grew in the garden. It was a garden where only flowers grew who had been changed by the blades of the gardening sheers and sometimes even pesticides that would cause petals to shed from the stamen. In this section of the garden, every flower was merely a seedling and Jolene was one of the youngest to sprout here. In her own words, she felt it was the place where her voice would still be heard after she was gone.

Jolene’s first SCAR portrait

“The SCAR Project was something very emotional for me. It helped me
embrace my scars and realize that they are something beautiful and they
are forever a part of me. I also see it as something to leave this world after
I’m gone. Something for my family to look at and never forget the fight that
I fought for my life.” 
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In the middle of her hurricane, Jolene still dreamed and talked about the things she wanted to do and the places she wanted to go. Some were as simple as wanting to gather in a garden in Florida with some of her favorite flowers and whip off her fake petals once more while singing Red Neck Woman at a karaoke bar, but Jolene’s stem and leaves were too battered by the storm to make the trek, so a paper flower named Flat Jolene was born to travel the world to the places Jolene dreamed of going, but couldn’t.
She started her journey in Florida and now has gone to places all over the world on adventures that continue to be shared with Jolene’s family, friends, and many fans. She stood in for Jolene on a cold October weekend in 2011 for the opening of The Scar Project Exhibition in New York City.
It was the weekend Jolene died, but Flat Jolene continued living for her. She skated at Rockefeller Center, rode up the elevator in Tiffany’s, went to a Broadway show, and stood somberly at the 9/11 Memorial with the other flowers. Throughout it all, weeping dew knowing that the original blossom, Jolene, had been plucked from the garden and laid to rest.

Although Jolene’s life was short, her garden was enormous and will continue to grow. Her roots remain in the soil surrounding the flowers she has touched and nourished with her love of life. The gifts she left behind are not just the material ones like the beautiful ceramics she painted with joy and love for dear friends in the Petroglyph Ceramic garden. They are the flowers she gathered together who can support one another through more storms or dance together in celebration . . . the ability to appreciate the little things . . . “Oh the joys of Hospice living . . . today is sponge bath day! WOOHOO! count your blessings! yes, even taking a shower is a blessing so be sure to wash behind ur ears people!” . . . the understanding that just because a flower sometimes wilts doesn’t mean it is giving up . . . it is taking a moment of quiet reflection . . . the knowledge that another flower has faced a similar storm . . . the ability to choose how one dies and to gracefully, yet honestly live while dying.
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The greatest gift Jolene may have left behind, though, is a community of flowers who are a loving family for her Mama Bear Denise. From the flowers of childhood and high school that routinely check in on Denise and nourish her soil to the Phyllodes and cancer bouquet that blossom love for her, Denise is always surrounded by a devoted garden. This was reflected most profoundly at the recent Scar Project Kick-Off event for Los Angeles. It was a weeklong adventure that began and ended with a road trip taken by Joules Evans, Flat Jolene, and Mama Bear Denise. The Scar Project sisters and community embraced Denise and shared much dew to water the garden. They gave her an opportunity to be Jolene’s voice and see the impact her beautiful blossom had made when she opened her petals and leaves to the world. They allowed her to become a part of not only the garden Jolene left behind, but the blossom Jolene considered her legacy. She left behind a part of her she knew still needed her Mama Bear Denise to bloom.
If we are wise, we throw back the curtains and open the window when the light beckons us from that darkened corner like Jolene did. We weclome ourselves into the garden first and begin nourishing our lives with the knowledge that the gifts we leave behind are created in the gardens of our living and even in our dying as it is a part of living in the garden of life.