The Absolute Reality of Stage Zero

Posted by Joules Evans

[In our continuing series of interview with/blogs by SCAR Project participants, I’d like to introduce you to the girl on the other side of the proverbial microphone and the Q’s, not to mention, standing beside herself in the photo below: Jessica Dietze.]

Q: Can you tell us a little about the cancer part of your story?

Jessica: I was 23 when I was unexpectedly diagnosed with the earliest stage of breast cancer: DCIS (Ductile Carcinoma In Situ) after I had a simple bilateral mastectomy for fibrocystic breast disease. I have no family history of breast cancer so it was more than unexpected.

I was 19 when I had my first lump removed because of fibrocystic breast disease, then officially diagnosed when I was 20 and started to try anything that would offer relief. I had a couple more surgeries to remove horribly painful lumps since that was the only thing that offered relief. Right before my 23rd birthday I was seeing my surgeon for yet another lump, and asked him if he could just take both of my breasts.

My mom suffers to this day from fibrocystic breast disease and it does impact her life. I didn't want to keep suffering.

So that was in August . . . and it took until November . . . after lots of fighting with the insurance company before surgery was approved. My doctors said it probably saved my life.

With how dense my tissue was they would have never found it until it was a higher stage. One oncologist said it would have been like finding a grain of salt in a straw.

Q: What drives a girl from Nebraska to fly across the country to NYC to have fashion photographer David Jay take pictures of what [Surviving Cancer. Absolute Reality.] means for you?

Jessica: I did The Scar Project to let people know, stage zero or not, no matter your age, if you lose your breasts you are affected. It changes you even when you say you’re not going to let it. Going through the surgery and losing a part of you that is a big part of femininity will shake you to your core.

I loved how raw the project was and I felt this connection to the project, like it was something I had to do.

Q: What did having your portrait taken for The SCAR Project do for you? How does it feel to stand beside yourself in a [Pulitzer nominated] exhibit? Or when you see yourself in The SCAR Project book, on DVD in The SCAR Project documentary “Baring It All”, on Style Network, in Life Magazine Online...?

Jessica: When I look at the pictures in the book or at the exhibit it’s almost an out of body experience. It’s hard to grasp the fact that I will forever be different because of breast cancer. The fears, the struggles, the future of my life will always have the black cloud of cancer hanging over it. When I look at the pictures in the project it makes me feel less alone . . . helps me deal with those emotions, but yet brings out more in me than I never thought I could feel towards, essentially total strangers. My struggles over the past few years are minor in the grand scheme of life. I look up to all of the women involved and the fights they have had to face. I can’t believe that I’m a part of something so amazing. It’s surreal and breath taking to stand amongst some truly beautiful women.

I think it’s surreal to have my photo part of such an amazing awareness campaign. I think the pictures really affect people more than any other project or awareness campaign does. It was surreal to see my picture with the LIFE logo in the bottom corner but I couldn’t be any more proud to be amongst the group of women that I am. David is amazing and I hope this project continues to do all that he hoped for and more.

Q: Where you are now in your life?

Jessica: 2011 has been a whirlwind; one revision surgery for scar tissue turned into me losing both my implants due to infection. I’ve never had to face my body with no breasts. When I had my mastectomy I had immediate reconstruction.  It’s easy to be bitter about all of my complications but then I just feel guilty. I’m healthy and in July I got my implants back so I blend in with the rest of society again. I’m ready to start a family with my husband, move past all the surgeries, medical bills, and constant rut of life I feel like I have been.

Q: What surprised you most about your experience being photographed for The SCAR Project?

I was surprised at how affected I felt after we took a break and looked at the photos. I used to try and hide my emotions a lot more then I do now and I remember fighting back the tears. After I got the email from David with some of the shots from the shoot I was just in awe at how gorgeous the pictures were and for the first time since my surgery I wasn’t ashamed of how I looked.

Q: What has surprised you most about yourself through your experience with The SCAR Project...through your experience with cancer?

Jessica: How emotional and continually affected I am by it. Having stage zero breast cancer is hard, it’s almost like people don’t believe me. I didn’t show any outward signs of the typical cancer patient so everyone just assumed I was, am fine. Toss in some guilt as to why I was lucky enough to have mine caught so soon and feeling overwhelmingly blessed that it was—it’s tough. It’s confusing when doctors don’t know what your future risk factors are and you feel like you are just in this guessing game with cancer. Some days I feel like I’m consumed with all the “what ifs?” . . . other days I’m ready to tell the world it could happen to anyone!

Q: What's the best thing that has come out of the scar project for you personally?

Jessica: I think it has made me stronger and sensitive to others and the challenges they face in life. It has also given me a confidence I’ve lacked my whole life, I feel powerful and beautiful. I also feel fulfilled to be part of the awareness campaign.

Q: What do you hope happens because of The SCAR Project?

Jessica: I hope the project brings light to early detection. That it gives hope and courage to anyone facing breast cancer. I also hope that it opens people’s eyes that may not be directly affected, that cancer can happen at all different stages and be more accepting of the effects it has on those dealing with it.

Q: Will you be able to come to Cincinnati for the exhibit this fall?

Jessica: We will be road tripping from Nebraska!

Joules: Yay! Cincinnati, The SCAR Project Cincy Team, and I look forward to hosting you and the other SCAR Project subjects who will be gracing our city and helping spread awareness about early onset breast cancer. 

Q: They say a picture is worth a 1000 words. What’s the message of your picture?

Jessica: Sadness, imperfection, pain, strength and confidence.

Joules: I don’t mean to have the last word here, but I’d like to add one more word: Beauty.

*******

For more articles online about Jessica’s story, please check out:

www.omaha.com/article/20100306/LIVING/703069864

http://secondbasedispatch.com/2010/10/15/beauty-bravery-breast-cancer-revisiting-the-scar-project/

Heather & Diana: Beneath the Pink - Lifting the Curtain on the Effects of Breast Cancer

[In our continuing series of articles about/interviews with The SCAR Project subjects, we'd like to introduce guest bloggers Heather Printz Salazar and Diana Featherstone. Both of them work with the Pink Ribbon Girls of Dayton and both of them will be at the cocktail party/documentary showing Thursday evening from 6-9.]

Heather Printz Salazar

Heather and her daughters, Lexi and Cara

It was 2007 and I was in New York taking some teens on a mission trip around the city before I participated in the Scar project.  My mom and dad flew in with my daughters Cara and Lexi, our son Caleb was with me on the mission trip.  My oldest son and husband were back home for his basketball game.  The whole experience was very surreal.  I had been going to New York since 8th grade and I am in love with NYC, however, it was my parents' and kids' first visit.  We woke up the next morning to go meet David and do the shoot.  My head was spinning.  “Should I be doing this?”  “Should I allow my girls to participate?”  “What were my parents really thinking?”  I got out of the shower and total peace just came over me.  I sat all 3 kids down on the bed and explained to them why we were doing this.  I told them breast cancer was not pretty, it was very ugly and difficult.  They were each sharing their thoughts about when mommy was sick, lost her hair, couldn’t drive, and getting medicine in her veins for a year.  I told them our story is a little different because Lexi’s mom had died from breast cancer, despite the fact that I got breast cancer too.  I told them God made us a family, but both girls have be aware about breast cancer.  I told them we were participating in a project that shows the world the truth about breast cancer, and that we were working to end breast cancer so they don’t have to worry about it anymore.

Breast Cancer had first come into our lives boldly in 2002 when I met a young woman, Alexis, who was nearing the end of her battle with stage four breast cancer and needed a home for her baby girl.  I prayed about this and told my husband Steve I thought we should adopt her.  His first response was: What?  We already had three small children.  Five weeks later, we had a new baby. Lexi.  

Throughout the next year, we took Alexis to chemo, doctors’ appointments, and then hospice. It was so incredibly painful to watch someone so young go through so much.  Alexis was raised in the foster care system and had very little support.  Before we had met, she went to her mastectomy by herself. Then she took a cab home from her mastectomy. Alexis had experienced so much adversity throughout her life and she wanted to ensure that her baby grew up secured and loved. Alexis died at the young age of 24. 

Two years later, with no family history, I was diagnosed with breast cancer at age 31. All I could think about was seeing Lexi’s mom die from this terrible disease.  Would my children grow up without a mother?  Would Lexi lose two mothers to breast cancer? 

I truly believe that Lexi’s mother is my guardian angel; she probably saved my life. She had been unaware that young women could get breast cancer, and her initial diagnosis was late stage. Afterwards she would tell everyone she knew to check their breasts.  If I had never met her, I highly doubt I would have ever performed a self exam, and I would have been dead before my first mammogram. 

That was our background as we all piled in a NYC taxi cab to the studio for my SCAR Project photo shoot.  As soon as we met David and Joanie, I knew we were doing the right thing.  David was sweet, professional, loving, and passionate about the project.  He captured exactly who we are and what we stand for as a family.  My husband cried the first time he saw the photo.  I left empowered to do what I was called to do. 

Through my life experience, I feel passionate about supporting women through breast cancer.  I cannot express how excited I am to start Pink Ribbon Girls of Dayton.  There are no specific groups in the Dayton area for young women dealing with breast cancer.  Through this non-profit organization, young women are offered education and awareness for early detection, support, and an outlet to express fears.  As I know firsthand, breast cancer is NOT prejudiced, it doesn’t care if you’re black, white, rich, poor, young or old.  It can interrupt your life when you least expect it.  We need to leave a legacy with our children’s children by curing breast cancer.  Until then, we need to support the women fighting the disease so they can be around for the cure.

[And that's when Heather heard about Diana, who had just moved to Dayton a month prior to being diagnosed with breast cancer. "Heather showed up at the doorstep with flowers," said Diana, who was 32 when she saw a lump in the mirror. Thankfully, her doctor ordered a mammogram.]

Diana Featherstone

Diana

I, like many others, connected with David Jay through a post on the Young Survival Coalitionʼs message board. Before cancer and even during treatment, I made every effort possible to avoid having my picture taken. So, you can imagine what it took for me to decide to fly to New York and bare my scars for a total stranger.

Before I arrived, I was very nervous about not being model material. David was used to photographing beautiful women for fashion magazines. I was a mother of two from the Midwest who survived chemo by eating macaroni and cheese. Lots of it.

It turns out, my worries were completely unfounded. David and his team made my husband and I feel completely comfortable from the minute we stepped in the door. His dog even helped herself to a snack from my purse. After trying on a few looks, the resulting photo was one of empowerment and strength...something I really needed at that time.

My husband, McKay, saw me and my scars in broad daylight for the first time that day. This is what the SCAR Project gave back to me. This is why I am so passionate about the story he is trying to tell.

As survivors, we spend a lot of energy making the people we love around us feel ok. Partly because we want to move on as much as we can, because we donʼt want to scare people away, because many people donʼt want to see beyond the pink.

These photographs, and the people committed to sharing the stories behind them through film, exhibitions, online media and more, lift the curtain on the effects breast cancer. I thank them for their efforts on behalf of myself, and everyone else who has been told that they were too young for breast cancer. 

"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!

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.

Introducing SCAR Project SuperSURVIVORmodel Vanessa Tiemeier

Vanessa was diagnosed when she was only 25 years old. Yes, young women get breast cancer. That’s a point The SCAR Project is out to make. The stats are out there for anyone to clearly see, but everyone knows a picture is worth a 1000 words.

Vanessa Tiemeier with husband Billy
at The SCAR Project exhibition opening night.
October 2010, NYC.

Dedicated to the more than 10,000 women under the age of 40 who will be diagnosed this year alone The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: 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.

"I think sometimes I am so good at
putting on a pretty face and acting all
put-together that some people don't
realize the extent of everything that
breast cancer survivors go through."

I heard about The SCAR Project through a post made on the Young Survival Coalition online survivor forums. David Jay put a call out for breast cancer survivors willing to travel to NYC to be photographed. I was intrigued but hesitant. I kept wondering if I would really want to or be able to show my scars to strangers, and expose myself like that. But after I emailed another young woman who had already participated and she urged me to go for it, I was excited to make the trek!

I took a 16-hour Greyhound bus ride from Cincinnati to New York City with my husband and younger sister. I was nervous meeting David in a city I had never been. My husband and family shared my nervousness, but supported my decision to want to take part in the project. My motive being that I don’t want to be part of the mold that breast cancer survivors have been confined to. It’s not always pink ribbons and charity runs. Breast cancer oftentimes is glamorized and commercialized.

I think sometimes I am so good at putting on a pretty face and acting all put-together, that some people don’t realize the extent of everything that breast cancer survivors go through. My outward scars and spoken words are only half of the story. They don’t show the emotional and private struggles that are continuously present. They don’t show the burden that my family has willingly endured. They don’t show the lifestyle changes and limitations that come with breast cancer.

David Jay embraces the everyday, personal, true happenings of life, and through his photographs, beautifully portrays every woman’s unique situation. As part of The SCAR Project, I can “just be me”. No covering up or masking the truth. No pretending that everything is fine.

I am so glad I had the opportunity to be a part of this project, and am honored that my photo is one of the ones selected to be in the exhibition. I am excited to represent Cincinnati when the exhibition comes here on September 29th, and look forward to sharing this ground-breaking exhibit with my home-town. After all, breast cancer is a part of my life but it does not define me. It will never be ALL that I am or ALL that I do. I can’t wait for my friends, my co-workers, my community, and the world to see me…as I really am.

—Vanessa Tiemeier, in her own words.