The SCAR Project as seen through a doctor's eyes

[It is my great pleasure to introduce this guest post by Oncology Hematology Care physician Douglas Flora, MD. Not only has OHC been one of our most generous supporters for the SCAR Project Cincinnati Exhibit, but they also happen to be some of the most amazing caregivers, not to mention lifesavers. My co-committee members Vanessa, Shelly, and I are all patients of OHC, as are quite a few of the Pink Ribbon Girls (our beneficiary for the Cincinnati exhibit) that we've been working with to bring The SCAR Project to Cincinnati. I cannot even begin to tell you how much it means to all of us to have OHC on our team. Thank you, OHC. And thank you, Dr. Flora for letting us see The SCAR Project through a doctor's eyes.]

Why We Should Look at the Face of Cancer

Guest Post By Douglas Flora, MD

Oncology Hematology Care

Exhibits like the SCAR project make us look at the face of cancer head on. The groundbreaking images are of accomplished, intelligent women who have taken bad news in stride, moved forward and remained accomplished, intelligent women. These beautiful pictures capture women demonstrating emotions in their barest sense:  they are brave images that remind us all of how cancer affects our wives, daughters, mothers in all shapes and sizes, and sends a powerful message about the importance of advocacy, research and early detection. One of the privileges of being a Medical Oncologist is that we KNOW these women: valiant, defiant, brave. These images stir emotions, stimulate debate and discussion, and bring attention to a vital population of our sisters, wives, mothers: all fighting, surviving, flourishing in our midst. They make you want to read more, research more, screen more, care more. I lost my mother to this disease, and I support ANY project like this that stirs hearts and encourages public attention to this important disease. Women who see these images can experience a more visceral understanding of what their sisters, neighbors, friends are going through. Pink Ribbons don’t tell the whole story and hopefully the Cincinnati community will support and embrace this project, giving cancer survivors the respect they deserve. These images remind us all to pay attention to the importance of early screening and detection of cancers, especially breast. They invoke emotions that are important: hope, fear, sadness and joy, which are all part of the human condition. These brave women are photographed in their barest state, with grace and dignity and hopefully inspire those like myself who work in this field to continue to fight this important battle.

About Oncology Hematology Care

As Greater Cincinnati’s top quality, comprehensive resource for cancer and blood disorders, Oncology Hematology Care offers patients a wide range of cancer specialists, the newest treatments and technologies, and clinical trials that bring leading-edge therapies close to home. With more than 50 physicians and nurse practitioners, our group cares for patients at more than 20 locations in Ohio, Kentucky and Indiana.

Cancer Fighting Princess

Posted by Joules Evans

[In my continuing series of guest blogs by SCAR Project participants, I’d like to introduce newlywed Mrs. Bud Adams aka Melissa the pink cowboy boot wearing Cancer Fighting Princess.]

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. The discovered an area of uptake on the CT Scan on the right side of my implant. They are not 100% sure of what it is so I had another CT done in June and will actually be going for another on September 24th. I just saw my gynecological oncologist again in August. She didn't find anything on my ovaries but my CA125 is still elevated so I have to get blood work done for that again. They 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.

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/

Cocktail Party Notes on Napkins and a Red Carpet

Posted by Joules Evans

Diana, David, Heather, Vanessa

If you were watching pictures from the SCAR Project documentary screening/cocktail party wallpapering Facebook last weekend, you probably noticed we had a very special guest with us.

Yes, it's true that Pulitzer nominated SCAR Project photographer David Jay did make a surprise visit to Cincinnati for the screening. (It was his first trip ever to Ohio, btw—imagine his surprise when we took him for a walk across the Purple People Bridge and he also got to see the blue grass on the other side;)  It's also true that Cincinnati SCAR Project subject Vanessa Tiemeier and Dayton SCAR Project subjects Heather Salazar and Diana Featherstone made a special appearance, and each shared their SCAR (an acronym for Surviving Cancer. Absolute Reality.) Project stories.

Diana, David, Flat Jolene, Heather, Joules, Flat Jolene,
Vanessa, Flat Jolene, Pam, Litsa

But there was also another guest of honor: Flat Jolene. Flat Jolene travels the world in search of epic adventures for the original Jolene, the SCAR Project subject we recently posted about here. Flat Jolene's mission includes "raising awareness about young adults (men and women ages 18-49) who are living with metastatic disease." The SCAR Project Cincinnati Exhibit is in sync with that mission. We'd like to thank Flat Jolene for coming to our cocktail party!

Flat Jolene is in the building!

We'd also like to thank the original Jolene for being my very special guest and co-blogger on this post.

So without further ado, here's Jolene's story, in her own words:

So, a lot of people have asked me to share my story about my fight with cancer. I decided to write it here so anyone and everyone can read it. Just to warn you, it is long, but here it goes.

When I was 17, I felt my first lump in my right breast. I ignored it for months until I finally went in for my annual exam and the nurse practitioner felt it. She immediately freaked out and referred me to a surgeon who ordered an ultrasound. I was like . . . “What is this bitch getting me into? I'm TOO young for this to be cancer!"

I went and got the ultrasound and we found out that it was solid and not a cyst like everyone thought. After that, I went to the surgeon and he gave me the option to either have a biopsy or get it removed. I decided to get it removed. So in July of 2003, I had my first lumpectomy. A few weeks went by and I didn't hear anything about my results so we figured that no news was good news. I started college to become a medical assistant and after my first day of school, I came home to find my surgeon sitting on my couch with my family! OMG, talk about house calls! He explained to me that my results took so long to come back because they had to send the pathology to Stanford since no one at the local hospital knew what it was. He then told me my diagnosis was a Phyllodes tumor. He said that before me, he had never even heard of it. It was borderline malignant and he didn't get clean margins. His understanding from what he read about it was that it would be best to do a single mastectomy followed by radiation, then reconstruction.

Being a 17 year old girl, my boobs were my best friends! I couldn’t imagine walking around with only one boob. What an idiot! If only I knew back then what I know now!! The surgeon decided to send me to a specialist at the UC Davis Cancer Center who had seen Phyllodes before. The specialist advised that a mastectomy wasn’t needed and we'd take the wait and see approach.

In October of 2003, I had my second lumpectomy to get clear margins and remove the second borderline malignant Phyllodes tumor from the right breast. After that, we did follow up visits every 3 months for a while. Eventually, it went to every 6 months and I was clear for about a year and a half. In February of 2005, when I was 19, I had my third lumpectomy for another borderline Phyllodes tumor. My doctor still didn't pursue the mastectomy because he felt that it wasn't going to turn malignant and wanted to preserve my breasts due to my young age.

June of 2008 rolled around and my doctor retired and my insurance changed, so I had to find a different Surgical Oncologist. Of course, I slacked on that until I felt a lump in my left breast in October of 2008. I found a really great surgeon and he did a lumpectomy that December. Immediately after that lumpectomy, I started to feel a lump in my right breast. It was pretty big by the time I got into to see my surgeon and at that time we decided that I was done getting lumpectomies every few years and it was time to do the double mastectomy. My new surgeon couldn't get me scheduled until February of 2009 for the double mastectomy. By that time, my tumor was 11CM; the size of a softball. I had grown out of my B-Cup bra and even out of a C-Cup bra. I thought my boob was going to explode! It was so painful!! The pathology report from my mastectomy showed that the tumor in my right breast was, in fact, now a malignant Phyllodes tumor. My left breast had more Phyllodes tumors and DCIS.

This is where the fun began! A PET scan was ordered and revealed hot spots in my right lung, right shoulder, a lymph node in my right armpit, and a lymph node in my right groin. My oncologist ordered a bone biopsy in my right shoulder because that was the easiest one to biopsy. That came back as a rare benign lesion. Then we decided to biopsy the lymph node in my right groin. Unfortunately, they didn't get a good enough sample. The biopsy was inconclusive. My oncologist decided that since the bone biopsy was negative for cancer, the other spots weren't cancer, either. What a mistake. I went back to work and went on with my normal life. About 4 months later, I had a repeat PET scan. It showed the spots were getting bigger. The lymph node biopsy was repeated, and what do you know, it came back positive for Phyllodes. My oncologist diagnosed me as Stage IV and referred me to a Sarcoma specialist at UCSF because he had never seen this kind of cancer.

I started chemo in October of 2009. I did Doxorubucin (aka Adriamycin, the Red Devil) and Ifosamide and had to be admitted to the hospital at UCSF for 6 days for each treatment. I completed 3 rounds of this protocol and had another PET scan. It showed that the cancer was unresponsive. So, in Febuary of 2010, I started Taxotere combined with another chemo that I can’t remember the name of right now. LOL! After 3 rounds of that protocol, I had a PET scan and it revealed it was working!! Yay!! My oncologist and I decided to do 3 more rounds. After completing the first round of this three, I noticed the right side of my lips were really, really numb. My local oncologist ordered a CT of my brain which came back normal.

About 3 weeks later, I noticed what I thought was an abscess in my mouth where I had 2 molars removed the year before. I went to the dentist and got x-rays done and they said it wasn’t an abscess but a cyst or a tumor and it was sitting on my nerve in my jaw which was causing the numbness in my lips. It started getting bigger and bigger and was really starting to get painful. I was, FINALLY, referred to an ENT oncologist at UCSF and he did a biopsy. The biopsy revealed a sarcoma. I, of course, assumed it was another Phyllodes. I would find out at a later date that I was wrong. On June 24, 2010, I had the right side of my jaw removed and reconstructed with my Fibula and a steel rod. I was in surgery for 15 hours and the ICU for 9 days, but I only remember 3 of them. LOL! All together, I was in the hospital for 2 weeks. The tumor measured 7 cm and grew that big in only 7 weeks!!

In August, I learned that the tumor was a whole different kind of sarcoma. So I've had 3 different kinds of cancer and they're planning on testing me for Li-Fraumeni Syndrome next month. It's a genetic disorder that increases your chances of getting different kinds of cancers and, usually, affects kids and young adults. I started a clinical trial at UCSF the beginning of this month. It's a mixture of Avastin, Taxol, and a brand new drug that doesn't even have a name yet. I have to go to San Francisco every week for eight weeks. Then we'll do another PET scan. I'm praying that this works!! Third time’s a charm, right?!? I can't wait to just be done with this and get on with my life cancer free!!

Update: Jolene's chondrosarcoma in her jaw recurred before the end of 2010. She was recently advised that the genetic testing for Li Fraumeni is positive and she underwent another grueling 18 hour surgery almost identical to the surgery she had last June. More of Jolene's jaw was taken and rebuilt. A couple of months after her most recent jaw surgery, it was determined that Jolene had two chondrosarcoma tumors growing in her sinus cavity/brain. Jolene underwent surgery to debulk those tumors and relieve some of her pain. After that surgery, Jolene (with the support of her family) decided to enter hospice care and live a life of quality over quantity. Jolene is busy enjoying time with her family and friends

Video message from Jolene:

To our dear Original Jolene: Flat Jolene was with us (in the cardboard!), but you were with us too, in all of our hearts. We have mad love for you here in Cincinnati, keeping you always in our thoughts and prayers. Thank you for your video message. It meant the world to us. You mean the world to us. Jolene, Cincinnati loves you!

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!

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 25^th 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.