by Joules Evans
One of the loveliest perks of the role I get to play as exhibition coordinator and social media manager for The SCAR Project is collecting and sharing the SCAR girls’ stories here. Their portraits have impacted me (as they have you, as they have tens of thousands of others like you and me, who visit the exhibits, web site and follow the Facebook group) not only as a fellow breast cancer survivor but also on a basic human level. Like SCAR photographer David Jay says, “The SCAR Project’s deeper message is one of humanity. The acceptance of all that life offers us . . . all the beauty . . . all the suffering too . . . with grace, courage, empathy, and understanding. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images intend to transcend the disease, illuminating the scars that unite us all.”
The SCAR Project is filled with portraits of young women who have come to the place where, as Carly Simon described—from her own experience of having battled the bitch that is breast cancer—“she accepts the war she went through and is ennobled by her scars.”
Ennobled. Honestly, when I first heard about The SCAR Project from my friend Shelly while we were a pair of bald chicks hooked up to IVs in the chemo cocktail lounge, ennobled wasn’t the first word that popped into my head when I imagined a photographic exhibition of young women confronting breast cancer and baring their scars.
Road-trip. That was my first thought. Shelly and I met in the chemo lounge and the only time we’d ever spent together up to that point was in the chemo cocktail lounge, sitting side by side in pale blue recliners, waging the ugliest war either of us had ever fought and neither of us were feeling ennobled quite yet. But I was feeling like a road-trip to the Big Apple to see The SCAR Project Exhibition (which I hadn’t even Googled because she said it was an awareness campaign I already felt pretty breast cancer aware) sounded like just the ticket.
I wasn’t as breast cancer aware as I thought I was. I mean, I was aware of my breast cancer, my absolute reality of what surviving cancer, or at least fighting like hell to survive it, felt like, my scars. But then I saw Emily’s portrait at The SCAR Project Exhibition.
My scars are similar to Emily’s, but mine tell a different story. At the time of my diagnosis I was a 42-year-old mother of three teens. I nursed them all as babies. In Emily’s portrait I saw a beautiful young mother-to-be confronting a completely different reality of surviving cancer than me.
That quote from Carly Simon comes to mind when I think about standing in front of Emily’s picture, the first time I saw The SCAR Project. Especially, that word: ennobling.
I was super fortunate to get to meet a couple of the SCAR girls that day. I was on a gallery tour with SCAR Photographer David Jay, and Vanessa Tiemeier and Melissa Adams were both in attendance for the tour, standing beside their SCAR portraits, emanating beauty, courage, and grace. Eager to share their SCAR stories. Ennobled.
As their images “transcend the disease, illuminating the scars that unite us all” so do their stories, and their lives, as well. And as I’ve gotten to know the SCAR girls over the past few years, I thought you might like to know some of the noble things these ennobled women are doing, to not just move forward, but to pay it forward.
Vanessa, who at 31-years-young has been battling breast cancer since she was 25, has long had a motto of living sincerely. She even has a live sincerely tattoo with a pink peony on her left calf. It’s her trademark “not a pink ribbon”. Shortly after she was diagnosed with a recurrence of metastasis to the brain, she and her sisters founded The Live Sincerely Project to encourage others to LIVE… really live NOW… and not wait till they find out they are dying to start really living. If you haven’t checked it out and taken the Live Sincerely Pledge, it’s not just the best way you can send Vanessa a little love and encouragement, but don’t just do it “For V” Do it for you. That’s what she’d want, anyway, because that’s how she rolls, living sincerely as she goes.
SCAR girl Barbie Ritzco aka Soldier Interrupted aka Marathon Barbie is one of the most kickass inspirational people I know. Besides RUNNING ACROSS THE COUNTRY with Steve Cannon and his coast to coast for cancer million dollar fundraiser for Livestrong this summer, Barbie and her SCAR sister Sara Hamilton have co-founded Flat AND Fabulous, an organization supporting women who are living the “Flat AND Fabulous” lifestyle after having their breasts amputated from confronting breast cancer, rather than, for one reason or another, having gone the reconstruction route. There is a Flat AND Fabulous Awareness group HERE. If you are living the Flat AND Fabulous lifestyle and looking for others who have been there and done that click HERE.
On the other end of the spectrum, SCAR girl Cary Goldberg found that after rocking a flat chest for five years, her posture started to suffer and she needed a foundation garment to get her standing straight again. Frustrated by uncomfortable mastectomy bras that constricted the free flow of lymph and were just plain ugly, she was thrilled to discover a women run sports bra company called Handful. Once she tried on their pocketed sports bra, fell in love with it and learned it was already L8000 mastectomy bra approved, she became COO and part owner of the company. Handful is changing their manufacturing to Made in the USA and Cary dreams of making more products that help survivors as their four-woman company grows. Check out this video about Handful HERE.
Speaking of fabulous, SCAR girl Sylvia Soo founded Cancerfabulous to chronicle her own experience fighting back with style, to inspire, and as a resource for other young women fighting breast cancer. Sylvia is currently working on a book with Rethink Breast Cancer called, Cancer Fabulous Diaries, which is due out later this year. Her short film, Dear Sister won the Amazing Grace Award at Toronto’s Breast Film Fest last year. Sylvia is also one of the four women (as is Vanessa Tiemier) featured in the EMMY Award winning SCAR Project documentary, Baring It All.
Heather Salazar and Diana Featherstone both work with a non profit organization called the Pink Ribbon Girls, whose mission is to provide personalized support to young women throughout all phases of the breast cancer journey, and whose motto is: “No one travels this road alone”.
Amber Crouse founded (or rounded up;) the F*CK Cancer Posse. The Knoxville based commuity seeks to reach young cancer survivors and their caregivers/co-survivors so that they do not have to face cancer alone.
Jocelyn Banks founded Mommy Has Breast Cancer, an organization whose mission is all about supporting the entire family throughout a diagnosis and treatment of breast cancer.
Shay Sharpe’s Pink Wishes organization grants wishes to young women diagnosed with stage IV breast cancer, between the ages of 18-40 and facing a terminal diagnosis from their physician.
[In my continuing series of guest blogs by SCAR Project participants, I’d like to introduce recently wedded Mrs. Bud Adams aka Melissa, the pink cowboy boot wearing Cancer Fighting Princess. I met Melissa at the SCAR Project’s world premiere in NYC in October 2010. This is a re-post of her guest blog for the SCAR Project Cincinnati Exhibition last October, but it seemed apropos to republish after Lauren’s “Breast Cancer is Not a Scarlet Letter” post. I think you’ll see why in her post and her beautiful SCAR portrait. Breast cancer leaves more scars than the ones on the chest, more than a pink ribbon can cover. This is the absolute reality of being a young woman surviving breast cancer. It’s my deeply felt honor and pleasure to know many of these young women, who have boldly gone where women hadn’t really gone before, in baring their S.C.A.R.s with such courage, dignity, and grace. In doing so, they share that courage with others confronting the same absolute reality of surviving cancer. And, they expose breast cancer for the wolf in pink clothing that it really is. The damsels are in distress, and it’s not just our mothers and grandmothers. Unfortunately, more and more these days, breast cancer is also picking on our girlfriends, sisters, even daughters. Damn cancer. Seriously. Let’s get serious and put an end to this damn disease.]
Guest Blog by Melissa Adams
I was diagnosed with genetic Stage IIA cancer on March 15, 2007 at the age of 31. I had invasive ductal carcinoma and ductal carcinoma in situ.
I found my lump on February 20th. Called my doc and was told to wait a week. Called back because it was still there and went in for an exam. The doc seemed to think that it was nothing and assured me it was not cancer (even after I shared that my great grandmother and uncle both had cancer—he said they were too distant!) But sent me for a diagnostic mammogram and ultrasound just to be safe. Those procedures were followed by an ultrasound guided needle biopsy, which by the way was the worst pain I have ever experienced in my entire life, still to this day. It took about 2.5 hours and I felt all 7 times they went in, despite being given a local anesthetic, twice. I bled for 6 hours after that procedure.
I got “the phone call” at work at about 8:30 on March 15th. The doctor who called me was one I didn’t know and hadn’t ever worked with—I work in a place where doctors frequently call my office so it never occurred to me who she might have been. She identified herself and the only thing I heard was “I don’t know how to tell you this over the phone.” I never heard her say breast cancer or you have or those two phrases together. I started screaming and crying even though I had spent the last 3 weeks researching, preparing myself, and convincing myself I would not be devastated. I was devastated anyway. My world turned completely upside down.
I don’t remember much of the day or the weeks ahead to be honest. I had an all day run at the hospital on March 21st where I met with surgeon, geneticist, and had a bunch of tests done. I was tested for the BRCA1/2 mutation—found out that there is a lot of cancer on the biological paternal side of my family. In fact, I am BRCA2 positive and as if having cancer alone wasn’t devastating enough, I got that punch in the face because it came from a biological “father” who has never had anything to do with me my entire life. I was able to joke about it though and told everyone that it confirmed that I’m a Teenage Mutant Ninja Turtle.
My surgeon recommended complete removal of the right breast because it could not be preserved with all of the cancer in there. She recommended removal of the left given the mutation. I had my bilateral mastectomy with immediate reconstruction on May 3rd (my step dad’s birthday). I opted for implants though I had been so against it from the beginning. During the surgery, the doc discovered that my margins were not clean and had to remove additional tissue down toward my upper abs and pectoral muscle but the margins were still not clean.
Though I was initially told I would not have to do radiation, it turned out that when they discovered the unclean margins, the radiation oncologist recommended I do it (by the way, it is not common practice to do reconstruction prior to radiation). So I was “pumped up” on the fast track plan…from about June until July and then on July 16th (day before my birthday) I had my expanders swapped out for the implants. I underwent 30 rounds of radiation therapy, which caused significant damage to my right implant. I suffered from capsular contracture, which is hardening of the implant, and I was lopsided! I had to wait to be out of radiation for 6 months before I could have my next surgery to fix the damage.
On May 8th, a year and 5 days from the one-year anniversary of my first surgery, I had surgery to remove the latissmus muscle from the right side of my back to bring it around and recreate my right breast. I had to have expanders put in again and went through the “pumping up” process all over again. In August 2008, I got my new and improved foreigners (that is what I call them).
Since I’m a BRCA2 carrier, I go every 6 months for ovarian cancer screenings.
This year of all years has been the most challenging for me. In January, they found something that appeared semi-solid on one of my ovaries. My CA125 levels had been in the normal range previous to this but had nearly doubled.
It was and always has been recommended that I have my ovaries removed but I’m not mentally or physically ready for that.
I went for a 2nd opinion where they scanned my entire body. They discovered an area of uptake on the CT Scan on the right side of my implant. In additional scans to continue to monitor, they also discovered on the CT Scan that I have a dilated aorta and come to find out that I have a significant history of heart disease on my mom’s side of the family. Now I see a cardiologist for that. So that is my story and where I am with my health.
I found out about the scar project through the online Susan G. Komen forum. I had emailed David Jay a few times about the project. I decided to participate because for me, from the get go, I knew this would never be about just getting through it. I whole-heartedly believe that I was meant to do something with this experience. My goals in life have always been to change a life, make a difference, and touch a heart. I never imagined I would have to get cancer in order to do that but that is just what happened. So I wanted to put myself out there as another young face of breast cancer.
I emailed David Jay so many times because I looked at his site and saw that all of the women had taken pictures with their shirts off and exposed their breasts. There were multiple reasons that I wasn’t willing to do that. One is that I work in public education and though this project is considered educational, I wasn’t willing to take the chance on losing my job over it. Even if I didn’t work in public education, I still wouldn’t have exposed my scarred breasts to the entire world. Up until very recently, no one other than my doctors had seen me without a shirt on. For the first 3 years or so after the reconstruction I could never look at myself. I would purposefully step away from the mirror when I was getting undressed. I think it was a lack of acceptance that this was my reality.
I can recall the day that I undid my dressings after my first reconstruction surgery. I was at home by myself recovering from the surgery. I decided to take a shower but before I did, I wanted to look. I undid the dressing and was completely devastated at what was before me in the mirror. I screamed and cried. I sobbed the entire time I was in the shower. I didn’t even know what to do with myself. I cried for hours and hours after that. One of my best friends had tried calling me that day and couldn’t get in touch with me. Finally, he decided to just come over and found me sitting on the back patio sobbing. It was probably the lowest point I had during my journey. All along all I ever wanted was to have “me” back. I have come a long way from that point but I still struggle with it, as many other women do.
This is what I wrote on my caringbridge site last year after going to the exhibit:
Before we even walked into the exhibit, I was overflowing with emotions. It is hard to explain what it felt like to look through the window and see my picture hanging on the back wall. There were a thousand emotions running through me…it was bitter sweet in so many ways. As we were doing the gallery walk, I was in tears. At one point, David Jay asked if anyone wanted to lead the gallery walk and Flora so kindly selected me. I, of course, went over to my photo. David Jay asked me to share a little bit about my story and so I did. I was crying the whole time. It was hard to look at my photo but at the same time, I couldn’t stop. It was hard looking back into the crowd and seeing my friends with tear-filled eyes too. There were several other girls that took part in the project that shared their story as well. At some level, it brought a sense of closure for me to that part of my life. I wasn’t sure I would have ever been able to look back at that photo and not see it as something that had complete control over my life but I was and I was filled with a sense of relief that finally I can move forward from that dark place.
I am hoping that this project is an eye opener for everyone…particularly anyone that seems to think that mammograms should be conducted once a woman turns 50 and for anyone that thinks self-breast exams and mammograms don’t save lives. We are all faces of proof against both of those ideas.
It is overwhelming to see my photo as a part of this exhibit. It almost seems surreal at times. Last year my photo was used for an article on AOL health and people were calling, texting, and emailing that they had seen my photo.
I was single when I was diagnosed with cancer. Had never been married and wasn’t dating anyone. I was convinced that no man in this world, especially my age, would ever be interested in me because of the breast cancer and because statistically I’m at risk for recurrence or ovarian cancer. I remember standing in my office at work talking to 2 of the secretaries about my upcoming mastectomy and was crying as I asked them, “Who is going to love me now?”
At some point along my journey, I had accepted this and seemed to be somewhat okay with it. On May 6th (the one-year anniversary of my lat surgery) I met Bud.
Bud and I hung out several times and eventually started dating. He bought my engagement ring on February 20, 2010 (the three-year anniversary of the day I found my lump).
We got engaged on May 17, 2010 and married on July 16, 2011. For me, it was a bittersweet day because it was the anniversary of one of my surgeries…but…it was also the day I married my best friend.
I never saw this day coming because had lost all hope that anyone would ever love me after all that I had been through. I had chalked it up as one more loss to the cancer. But then I met Bud. He loves me unconditionally. Never once did he look at me as the girl with cancer, he always saw me as just Melissa. He taught me that I am worthy of being loved but more important than that, he helped me in the process of learning to love myself again. Even when I told him early on (before we were officially dating I believe) that I would never have children because of the 50/50 chance of passing it on to my child, he still pursued me. There have been times when I feel as though he deserves so much better because he is such a great guy…he should be with a woman that has her real breasts, someone that doesn’t have to eventually have to have her ovaries taken out because of the risk of additional cancer, someone that doesn’t have such a high risk of recurrence or other cancers, and someone that can/will have children because he would be a great dad. But he loves me for me and wouldn’t give me up for anything.
Bud and I founded Cancer Fighting Princess in October 2009. It started out as a conversation, about me and about having a web page about my experience. He asked what I would call it and I said “Cancer Fighting Princess, duh!” From there evolved the idea to start a charity. We have decided to focus on supporting young women currently undergoing treatment for breast and/or any gynecological cancer.