Jul 29, 2011

"Yeah, I'm a SCAR project groupie..."

[In our continuing series of articles about/interviews with The SCAR Project subjects, we'd like to introduce guest blogger Sara Bartosiewicz-Hamilton. This article is cross posted at Sara's blog: slbarto.blogspot.com. Please visit her site for more about her story.]

I am so excited - this fall, the SCAR Project is going to be going to Cincinnati, Ohio!! I am hoping I will be able to share the exhibit experience with some of those closest to me...

Everytime I think about the SCAR project, I get an overwhelming feeling of deepest gratitude. I can pinpoint the experience of going to NYC and posing for David Jay as the first time in my life where I truly embraced myself. It would also be the first time that I met three of my "SCAR sisters": Jessica, Melissa, and Gabrielle. 
These beautiful women embraced me, encouraged me, and "showed me the ropes" of breast reconstruction. 

My story is slightly different than many of my SCAR sisters...I never had breast cancer. I was 29 when I found out I have the BRCA2 gene mutation. Because of my family history, I immediately signed up for a prophylactic bilateral mastectomy (PBM). At that point, having a mastectomy prophylactically was not well publicized. As a result, there were people in my life who thought I was insane for cutting off seemingly "healthy" body parts. It was difficult to try to deal with the procedures and the changes to my body while also trying to explain or justify my decisions to those around me. I created a blog to journal my decisions and journey...I was determined to share my story so that those who would have to make similar choices would not feel the loneliness and judgement I felt.

My blog, at the time, was via myspace...Jessica found me there. She and I became friends. One day, she emailed me about a project - the SCAR project...she told me that she was meeting two other girls in NYC and she thought I should come as well. I looked up the website and immediately emailed David Jay. I explained my story and the fact I did not have cancer but I thought my message was important as well...and, thankfully, he agreed to have me come and pose for him.

I was so incredibly nervous. My youngest sister lives in NYC so I had flown out and stayed with her and she accompanied me to David's studio. Thankfully, Jessica, Melissa, and Gabrielle were also there and very supportive - they had already finished posing. I brought a picture with me...a picture which helps tell my story. In the picture I'm holding is my mom and two of her sisters: one who has had breast cancer, one who has not had cancer and does not have the gene, and my mom, who has not had cancer but has the gene. Even though each of their stories is a little different, every girl in the photo lost her mother to cancer - my nona died at a young age from breast and ovarian cancer. The little girls in the photo would grow up and face multiple siblings who fought various cancers, multiple relatives who would die from cancer. 

I flew back to NYC last fall - the opening of the SCAR Project exhibit. It had been three years since I had posed. It was a surreal experience - something that changed my life was now going to be on display for the world. My youngest sister was my date for the night. We met up with Melissa and Gabrielle and went into the gallery. 

Sara, Melissa, David Jay, Gabbrielle
It is difficult for me to describe what I felt when I first stepped into the bright white gallery where the photos reach out to grab you - awe, inspired, nervousness, comradery...the list goes on and on. I was able to meet more of my SCAR sisters...it was strange because it was difficult to pick each other out of the crowd, apparently, we all look slightly different with clothes on! I attempted to verbalize my gratitude to David Jay but, of course, ended up blubbering like an idiot...ha! Thankfully, I had come prepared with a card that spelled out my gratitude to a man with the most tender of hearts who captured the strength and beauty of me and my SCAR sisters...

Today, I can tell you, I am fortunate to call even more SCAR sisters my friends. We are a unique group of women each with different stories and different challenges. Yet, we all come together and support each other in these journeys. I am hoping to meet up with many of them in Ohio this fall...and, I think, many of us will be holding an incredibly special sister, Jolene, close in our hearts.

The SCAR Project has taken on a life of its own: a book, a documentary, a website, ayoutube video, a facebook page, and a plethora of articles. I am in awe and so proud to have been a small part of this Pulitzer prize nominated project. My hope of sharing my story has been realized many times over...I often read the FB page and am thankful as I see women who are finding comfort and hope in the photos. That is what this project is about - waking people up to the reality of what cancer is...and, at the same time, helping all of our sisters realize the beauty in their strength and scars.

I'm a SCAR project groupie...I wish I could make every opening, unfortunately I won't (I'm REALLY bummed Italy is a no go for me!)...but, this fall, you, me, and Cincinnati!! Please check out their blog for the exhibit - they will be featuring many of my SCAR sisters and getting the word out so we can raise money for a fabulous local organization!

Jul 14, 2011

SCAR Project Documentary Viewing and Cocktail Party

Thursday, August 4th • 6:00 pm - 9:00 pm  
(Film will begin at 7:00 pm)

Art Design Consultants Gallery 
310 Culvert Street, 5th Floor, Cincinnati, OH 45202 

Please join the SCAR Project Cincinnati Planning Committee for cocktails, a viewing of the SCAR Project documentary: "Baring It All," and to meet our beneficiary: Pink Ribbon Girls, as well as some of our sponsors and other friends of the SCAR Project Cincinnati exhibit.

Several SCAR Project subjects will be attending, including Vanessa Tiemeier, who was one of the 4 young women featured in the documentary. Also, we will have a few door prizes to give away.

The SCAR Project Documentary Showing and Cocktail Party is gratis, however we will be collecting donations for Jolene, a SCAR Project subject who is currently at home in Hospice. (Her story)

We hope to have a limited supply of SCAR Project books and Baring It All DVDs available for purchase that evening.

Related Links:

Please contact thescarprojectcincy[at]gmail.com with questions.

Jul 13, 2011

Jolene's Story

Posted by Vanessa Tiemeier

Right now as I write this, I have goosebumps and feel nauseous. My good friend and fellow SCAR Project photo subject, Jolene, is fighting the fight of her life right now. I consider her a friend, although we have never met. However, her personality shines through her Facebook posts and she is witty, blunt, forward, and honest.

Most people dealing with cancer have to adopt some sort of message-relaying stystem. Mine has mainly been through my Carepage. I tend to be somewhat vague, usually upbeat, and not too focused on my situation. I am vague because I don't like to have to go into details that most people won't understand anyway, am upbeat because I don't want people to worry and it is usually easier for me to grin and bear it that it is to spill the beans, and don't like to focus on my situation because I hate the fact that cancer is a part of my life and just want to be excited about other aspects of it. I don't like to be in the spotlight. People call me brave, or "so optimistic", but in reality, sometimes I wish I had the guts to just tell like it really is...

Which is why I seriously admire Jolene's no-holds-barred attitude. I can only hope to be as genuine and self-aware as she is everyday.

Jolene was 17 years old when she found out she had a Phyllodes tumor. Three things to point out here: 1. SHE WAS 17! 2. Phyllodes tumors account for less than 1% of all breast cancers. 3. Her surgeon came to her house to explain her pathology report because he himself hadn't even heard of such a thing before her. And if this seems incomprehensible to you, believe me, you are not the only one who cannot wrap their head around it.

But that is just the beginning of Jolene's ordeal. Since her Phyllodes tumor detection, she had a different 11 cm sarcoma tumor (the size of a softball), had a double mastectomy, more Phyllodes in her lymph nodes, got a Stage 4 (Metastatic cancer) diagnosis, countless rounds of chemo, a 7 cm sarcoma in her jaw (which grew that big in 7 weeks), followed by the right side of her jaw removed and reconstructed with her Fibula from her right leg, only to find out a year later that the cancer returned to her jaw so she had to then remove her entire jaw using her left tibia this time, many rounds of radiation to her face, a solid mass behind her eye that was destroying the bone of her sinus and cranial cavities, cancer spots that showed up on her jaw again (even after both major surgeries) as well as spots on her lung, surgery to relieve the pressure/pain from behind her eye, and had a mini stroke from the tumor on her brain....which brings us to today.

I cannot even begin to express my thoughts on all this. I think it hit me most when her Flat Jolene page (friends & supporters who travel with cut-outs of Jolene's head so she can "be" at places all over the world) posted this notice: Donations for Jolene's Celebration of Life Services - Helping her family to celebrate her life now and in the future. Jolene is in Hospice at home. She sums it up best herself:
"good morning world!!! another day, another thing to be greatful for!! Hospice social worker and nurses coming today, then its Tinkerbell time, and more time spent with my great friends and family!! they know who they are!! thanks guys for being here for me everyday and making sure im being well taken care of and not alone!! this past week that i've been home has been full of very special moments, laughter and tears!"

Jolene, I feel in some small way deeply connected to you, since we have 2 things in common: We allow the world to see us as we are through our SCAR Project photos, and we have Stage 4 mets. Although we share those 2 things, I will never measure up to your true beauty. You are so wise, raw, real, graceful, compassionate and sincere. I am humbled by your poise and inspired by your passion. To say that you have touched the lives of many would be an understatement. Because of you, I realize that every moment is precious and should be lived to the fullest.

I dedicate my involvement in the the SCAR Project to you. I will share your story to everyone I meet. I try to live by the motto "Live Sincerely." You truly do. Thank you.

Jul 7, 2011

The SCAR Project documentary “Baring It All” On Style Network this Saturday at 9 pm.

Posted by Joules Evans

Tune in this Saturday at 9 pm to the Style Network’s world premiere of “Baring It All”—Patricia Zagarella’s groundbreaking documentary about the Pulitzer nominated SCAR Project.
“Baring It All” follows fashion photographer David Jay, into the worlds of four young breast cancer survivors, exploring their journeys and being photographed for the SCAR Project. “Baring It All” portrays what: “Surviving Cancer. Absolute Reality.” Is really all about, for them (and for the more than 10,000 young women like them, who are diagnosed each year).
“Baring It All” uncovers what’s beneath the pink ribbons.
In the rolling out of the red carpet for Saturday night’s premiere, I interviewed “Baring It All” filmmaker Patricia Zagarella. So without further ado, how about some lights, camera…and action (cue up the first question, enter Patricia Zagarella for the answer parts):
Q: How did you find out about The SCAR Project?
A: David Jay and I have a mutual friend, who was visiting NY from Australia. She randomly bumped into David while on her visit and he told her about the Scar Project. She then sent me a link and my co-producer, Nicola and I, were blown away by the photographs – the beauty and the pain, every image and every woman’s eyes screamed a different story we wanted to learn more.
Q: What inspired you to start filming the documentary?
A: When I first saw the SCAR Project I was captivated by the raw reality conveyed by his photos. Striking and beautiful, yet confronting and almost brutal, they pushed me to a place I normally contentedly avoided. I was both shocked and saddened, but drawn to the images like a magnet. Despite that the photos spoke volumes, I had a barrage of questions screaming in my head, not only about the young women in the photographs but also about the photographer: Who was he? Why was a successful fashion and beauty photographer photographing young breast cancer survivors? Why did he embark on this journey and what motivates him to continue?
Fascinated, I reached out to David Jay – who reached back with enthusiasm and warmth. I then met a genuinely kind and caring man, whose world had been turned upside down when confronted by a close friend’s body after a mastectomy. He told me that he dealt with it the only way he knew how, by taking her picture. And the rest is history.
Q: Can you describe the process, and the emotions of filming such painful images? (ones that most breast cancer patients haven’t seen before they have a mastectomy–hopefully The SCAR Project will change that.)
A: We were an all female team during the photo shoot sessions, our goal was to be unobtrusive and document the event, what we experienced was a palpable transformation taking place before us. Women would come to the door broken and nervous and by the time they left, they had a renewed sense of pride, hope and strength. Every single woman exuded beauty that came from her resolve and attitude, which David captured perfectly.
It was a very special experience, albeit a tough one, being able to capture this transformation, to be able to share in the anguish, the pain, the tears and the laughter.
Q: What were some of the hi-los of filming this project? What surprised you most about filming “Baring It All”?
A: Meeting and spending time with these amazing, strong young women has been an incredible high. I have been touched in a profound way by all the women we met, and I’ve learned so much from them – celebrate life and live in the moment. I remind myself of that daily.
The lows have obviously come when confronted with beautiful young girls struggling to beat this horrible disease.
What surprised me most was the enlightened attitude of such young women and their strength in the face of their mortality.
Q: How did you get into filming?
A: I started working in TV & film in Australia after graduating from University. My first job was working at a TV station and it just went from there.
Q: What do you consider your particular calling in the film industry to be?
A: I enjoy producing, finding compelling stories and character, and then finding the right team to execute that story. I really love meeting people and learning about them, and under the pretense of filmmaking I get to ask lots of questions most people are afraid to.
Q: What other film work have you done?
A: I started working in narrative features, but then about 7 years ago I was presented with the opportunity to co-produce a documentary, and from that point on I was hooked. I loved telling real stories by real people. Who needs a script, real life is far more compelling, heart-warming, and heartbreaking.
Q: The doc was originally titled “Don’t look away”? How did it go from there to “Baring It All?”
A: The doc was originally titled “Don’t Look Away”, a title Nicola my co-producer came up with. We decided on that title early on because people’s initial reaction at hearing about the subject and photos was to look away. The entire message and point of the project was to remove the stigma and normalize something that so many women undergo but no one ever sees or talks about. We wanted people to look at the photos, look at the women, at the scars, and at their eyes. The name was changed when the Style Network came on board as they felt that “Don’t Look Away” didn’t adequately describe what the film was about. After much back and forth, we settled on “Baring It All” as the new title.
Q: How did the Style Network come on board to air the documentary?
A: Two great women, Beth and Andrea from Remarkable Content took my trailer to the Style Network about a year before they actually came on board. The VPs at Style thought it was an important story to tell and one that their viewers could connect with, however one-off documentaries were completely out of the realm of their usual programming that it just didn’t work. They came back to me about a year after our initial conversation and the VPs had come up with an over-brand series called Style Exposed, which would include one-off documentaries. “Baring It All” is the first in the Style Exposed series. Hopefully it’s a success for Style and they continue to produce one-off documentaries with heart.
 Q: Who/what/where are you going to watch the premiere?!
A: I will be watching the premiere with David, Joanie, Nicola and my crew at David’s studio on Saturday night.
Q: When/how will the dvds be available?
A: The DVDs will be available on July 25th through Amazon. The SCAR Project, Volume 1 book is also available on Amazon.
Q: How would you articulate the message you hope people get when they view your doc and the SCAR Project?
A: I want people to see that there is true beauty in strength and hope in the face of despair. There’s power in optimism and it’s ok to have scars and to look at them and let people see them.
In line with the SCAR Project message, the goal is to raise awareness and let people know that young women can and do get breast cancer. Early detection is the best prevention, therefore the more people who see the film or the SCAR Project photos the bigger the impact.
Q: How can people follow you, support the amazing things you are doing like this documentary?
A: People can keep up to date with my work via my website atwww.lostinvision.com or via Facebook.
Q: What are you doing next?
A: I’m developing a project that deals with alternatives to incarceration, with a focus on young women who are at risk, and we hope to help transform their lives before it’s too late.
Q: Not really a question, but I’d just like to thank Patricia for a brilliant interview and also say “go break a leg!” in re: the “Baring It All” premiere this Saturday night. And I’ll just go ahead and say BRAVO! because I know it’s going to, as The SCAR Project intends: Raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens. So kudos Patricia. Cheers and kudos.