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The Girl Who Put The V In Living Sincerely

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[Most friends/fans of The SCAR Project are familiar with this beautiful face. Many of you followed Vanessa Tiemeier’s journey via The Live Sincerely Project. This week marks the second anniversary of her passing. It has been a rough week for her family, the SCAR family/community, and all of us who loved the girl who put the V in living sincerely and left a V-shaped hole behind, in our hearts. For me, Facebook has been reminding me of all the lasts I got to have with her. #everydamnday. Like I’d forget or something. I haven’t forgotten, nor have I gotten over losing her presence in this world and in my life. And I hope I never do cuz how shallow would that be of me? Recently I was asked to write an article about Vanessa for SoHza magazine, honoring her memory. I thought I’d share an extended version of it here, along with a few extra pictures, because even though Facebook posted the last last on Feb. 23 when she took her last breath and went to her rest, I’m not done. Remembering V. I can’t write Vanessa’s SCAR story from her perspective. I hope someday to share her SCAR story from her husband Billy’s and her sisters’ Jess and Christina’s perspectives on this space. But in the meantime, in memory of Vanessa and in the spirit of living sincerely, here’s my story about my beautiful friend V.]

by Joules Evans

You know how a yes or no decision can sometimes feel like a coin toss…but then that yes or no somehow sends out some kind of a ripple effect that alters your course? Or how randomly bumping into a beautiful stranger at an art gallery in NYC can sincerely change your life? That’s what happened to me on a Saturday afternoon in October of 2010 when I got invited on a roadtrip to the Big Apple to see the world premiere of The SCAR Project and met Vanessa Tiemeier.

It was a Saturday afternoon on my first day in the city that never sleeps, and I was feeling the energy as I stepped into the holy hush of the exhibit, to take a private gallery tour with SCAR Project photographer David Jay and a few of the models who were on hand. I really didn’t know what I was walking into. It seemed like such a simple left turn into the gallery off Soho, but it ended up being more of that proverbial left that I shoulda taken in Albuquerque. And am so glad I did.

When my friend Shelly invited me to go to the opening with her during chemo one day, I remember thinking that I was already pretty breast cancer aware. I didn’t even Google The SCAR Project because really all I heard when she asked me to go with her was ROADTRIP TO NYC. Which meant, 10 hours in the car not the chemo lounge, and a weekend in the Big Apple that would take girls night out to a whole new level.

When I walked into the gallery and face to face with SCAR Emily’s portrait, I realized I was not as breast cancer aware as I thought I was. She was baring her scars AND a pregnant belly.

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Her absolute reality, surviving cancer, was a completely different story than mine. Since I was 41 when I was diagnosed, I had already had my children, nursed my babies; they were all teenagers at that point in my journey. Emily had faced cancer, and was facing me, with child, without breasts.

And then I met Vanessa.

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She and her husband Billy were standing beside her SCAR portrait. When she shared her SCAR story, I learned more about her absolute reality of surviving cancer. SCAR stands for Surviving Cancer. Absolute Reality. It’s an awareness campaign that young women can and do get breast cancer.

Vanessa’s absolute reality of surviving cancer was completely different from both mine, and Emily’s. The truth is, everybody’s is. But I had never thought about it like that because I only knew my own reality. Bumping into Vanessa that day 5 years ago cracked me and mine wide open.

Vanessa was only 25, newly married, and she and Billy were ready to begin filling the quiver…when she was diagnosed with breast cancer. Vanessa had always dreamed of a really full quiver. She and her sisters, Jessica and Christina, were always very close, both growing up, and as grown-ups. They’d even started a graphic design business called Blustery Day Design together. Vanessa wanted all that and more, for the children she dreamed of having.

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Christina, Vanessa, Jessica

Prior to that opening of the exhibit, Vanessa had already fought a second battle with the disease, bared her (new and old) scars again by posing for a second SCAR photograph, and shared her SCAR story in the EMMY award-winning SCAR documentary, Baring It All, by Patricia Zagarella.

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The SCAR Project meant so much to Vanessa, because, as she told me many times, being a graphic designer, she was way more visual than verbal, and this was the best way she could articulate her new reality. It was her way of showing the world what a young woman’s absolute reality of surviving cancer really looked like.

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A broken pinky finger, slammed in a drawer, and one precautionary Pet Scan later—which “lit up like a Christmas tree”—ended up as a Stage 4 metastatic breast cancer diagnosis. I don’t know what that feels like and I hope I never do, but she told me what it felt like to her. “I used to be super upbeat and positive like you after getting knocked around by breast cancer the first time. But the ultimate blow of hearing it’s back is a whole another story. Not so pink and fuzzy. Or hopeful. There is no cure. There is no finish line. There is only fight for your life for the rest of your life.”

The thing about Vanessa was that even though she knew she was living on “borrowed time” she was not going down without one helluva fight, nor having wasted that precious gift of time. Her mantra was LIVE SINCERELY, which she had tattooed on her left calf, with a pink peony, her favorite flower. That was her pink ribbon. Her message was basically, “don’t wait till you find out you are dying to really live.” This is how she lived and loved and fought. Fierce. Both for herself, and for other young women like her.

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And there she was, standing beside her SCAR portrait, sharing her SCAR story.

When she mentioned she was from Cincinnati, something sparked in me. As much as she was standing there, literally, beside herself, next to her portrait, I was feeling quite beside myself, to tell her that I was also a survivor from Cincinnati. I told her how moved I was by the exhibit, her SCAR portrait and story, not to mention the crazy beautiful serendipity of our meeting…and would she like to work together to try and bring the exhibit to Cincinnati? “Yes,” she said, simply. “Let’s bring it.”

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Somehow we did. Neither of us had ever done anything like producing a breast cancer event, let alone a major art exhibit before. We really didn’t know what we were doing. We fumbled around trying to find a proper venue for quite awhile. But then we met Litsa Spanos, owner of Art Design Consultants. When she heard about The SCAR Project, she offered to host the exhibit at her gorgeous “Gallery in the Sky” downtown.

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But it almost didn’t. After 6 months of intense planning. Two weeks before the opening of our Cincinnati SCAR exhibit, Vanessa, who’d been dealing with severe headaches, got a bad report from the scans. The disease had spread to the lining of her brain, requiring immediate radiation. We talked about canceling the exhibit but Vanessa’s response to that was basically “the show must go on.”

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Vanessa’s sister Christina Blust at the Cincinnati opening.

Somehow it did. All I know is that we were an awesome team. We ended up raising $13,500 for our chosen local beneficiary: The Pink Ribbon Girls, and $7,500 for The SCAR Project. All I know is it had everything to do with Vanessa putting herself out there as the face of young breast cancer in Cincinnati. All I know was getting to work with Vanessa on something so beautiful and so much bigger that us all, changed my life. And I know Litsa feels the same way.

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All I know is when the cancer wouldn’t back down, went to her brain, and kept progressing, Vanessa didn’t back down one bit either. She and her sisters created The Live Sincerely Project, to be her legacy, based on her motto. She spent the rest of her days sharing the project and encouraging people to take the pledge. A few of my last memories of my beautiful friend Vanessa, were of her hoping her movement would keep spreading, of her checking to see where in the world people had taken the pledge to Live Sincerely, and of her making 100’s of Live Sincerely signs with different fonts and borders. All I know is: Take that cancer. Vanessa won; you lost. She is free of you now but lives on in the hearts of everyone who was lucky like me to know her, or who will hear about Vanessa through The SCAR Project or her Live Sincerely Project. All I know is that despite everything you tried to throw at her, she still left a beauty mark that she was here.

When I think of Vanessa, I think she answered the poet Mary Oliver’s most poignant question so beautifully: “What are you going to do with your one wild and precious life?” Live Sincerely.

RIP V

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Chemo Kardashian

[So. Many. People. ask me about the girl in this breathtakingly beautiful Indian woman SCAR portrait. My girl Sona. I met Sona at The SCAR Project Cincinnati Exhibit in 2011. This was a pretty epic exhibit, with about 20 of the SCAR girls coming to my town. First of all, it was the first time SCAR exhibited outside NYC. Secondly, it was when some kind of superglue bond between the SCAR girls happened. When Sona arrived in Cincy in 2011, we rented a motorized wheelchair for her, as not being able to walk was one of the side effects she was dealing with, from chemo. In 2013, Sona came back to Cincy, this time for our Cincinnati SCAR sister Vanessa Tiemeier’s celebration of life. But this time, she walked off the plane. That’s how they roll, showing up for one another like that. It’s been one of the blessings of my life to witness. Just like my sweet Sona Sunflower.]

Guest Post by SCAR Girl Sona

Cancer 1.0 (Sona ~ 19 years old.)

The first time I had cancer, I never knew. I had not been told those words that I’ve gotten numb to hearing all these years later. I was 19 years old and a freshman at NYU. I had a double major and double minor, which didn’t leave me time for a double mastectomy. I was touching every area of interest in my studies and my lifestyle. MY whole life was ahead of me. Pain in my breasts had led the doctor to find lumps. Three to be exact. I spent Valentine’s Day that year lamenting that I was having three lumpectomies done. Two on the left side, one on the right. “Fibroadenomas,” they said, which begged relief. After all, it “wasn’t” cancer.  In those days, they didn’t drop their jaws at things that would be a concern today. What no one told me about was the DCIS (Ductal Carcinoma In Situ) that I found in my operation report 17 years later when I was diagnosed with stage 3 cancer at the age of 36. That’s when I heard the words that stopped me in my tracks. It was as though I had just heard that the field I was running through was filled with landmines. Which it was.

Cancer 2.0 (Sona ~ 36 years old. Sai ~ 2 years old.)

I was married, the mother of a two-year-old son, and smack in the middle of graduate school when I was finally diagnosed with cancer. 17 years. I had already been through enough (or so I had thought), by then. My plate was fullprevious breast surgeries, PTSD from being at Ground Zero on 9/11, congenital Ehlers-Danlos Syndrome that had cost me over a dozen various surgeries and procedures, divorcing my soulmate. For dessert, my left breast got 14 cm of cancer that had spread all the way to the axillary lymph nodes. They called it Stage 3 Luminal B (ER+, PR+, HER2-, Kl67 70%). I had DCIS in the right breast.

I was outraged that it hadn’t been caught sooner. Let me backtrack a bit. I had been having trouble for years and it had seemed as though no one was listening to whatever red flags I’d had the courage to wave. Actively nursing, my milk ducts had been getting clogged to the point of having to have them surgically extracted. This is very difficult to do since the nipples don’t have skin over them and therefore cannot be stitched up. It requires pumping and dumping bloody milk for a week as the nipples heal. I had sounded the alarm to my OBGYN and a oncological GYN. No one had said cancer when I was 19, but I had been told to be careful and concerned going forth. My complaints were all brushed aside. Since I had been nursing my son, something I planned to do for 2 years (recommended by WHO),  I had been told that once I weaned him, they’d look at it with a mammogram to see what was going on. I didn’t last the two years.

Cancer came in kicking and screaming, knocking my door of self-awareness flat off the hinges. I knew something was wrong. I was in excruciating pain for months. Breasts would fill quickly and get engorged and I’d pump a whopping 10 ounces out of each between feedings! My son was a barracuda and nursed strongly. I thought this might be why I hurt so much. I complained of pain all the time but didn’t have anyone take the complaints seriously. I couldn’t so much as lie on my bellyany pressure on the breasts sent sharp pains like needles through the entirety of my double Ds.

At this point, I moved from Florida to New Jersey to stay with my mom so I could have help with my child while I tried to find out what was going on. My son was two, non-verbal, not potty trained, and would not feed from anything but my breasts. We would later find out that he had classic autism. My husband was not dealing with stress well. I needed reliable help.

It took me six months to be able to see the gynecologist in New Jersey, who then told me not to worry about it. “It’s just connective tissue,” she said. She felt the breasts and was positive it was not cancer and that I did not need a mammogram. On this, my first and last visit to this doctor, I demanded from her a script for a mammogram because NOT ONLY was I in so much pain I could barely handle it, but I was also covered for a baseline at age 35 by my crappy University insurance plan and it would be bad practice for her to deny me a freaking baseline at 36. She consented hesitantly and let it be known that she didn’t care for me getting huffy with her.

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Thank God for intuition and the pain that cancer brought because I would never have caught it if I had not been assertive. I was adamantly told it was NOT cancer just by the doctor feeling my breasts confidently, even after hearing about the history I had from age 19. This is what still infuriates me. It could have and should have been caught earlier because even young people get cancer. (Which is what The SCAR Project is all about.) An MRI or Ultrasound could have diagnosed it if the doctors had bothered to give me one in Florida.

Finally, after scans, biopsies, and much worrying, I heard those words on June 13, 2007: “You have cancer.” I opted for the double mastectomy and the TRAM flap reconstruction. I thought it was a natural choice. I had a radial tire going on and who would say no to having that nipped and tucked for the sake of the cancer and reconstruction? You see, a pedicle TRAM flap is where they carve out your breasts from the skin and then move your abdominal muscle into the flap. You end up with 4 of your 6-pack in your boobs, basically. This is a procedure most doctors will not agree to do bilaterally anymore. You will see why.

The surgery took 11.5 hours and involved my surgical oncologist and a plastic surgeon. When it was over, I had blood clots in both my lungs and cancer cells still in the chest wall (which I would find out seven and a half years down the road). The blood clots didn’t kill me but they royally fucked up my reconstruction and I had to have the whole thing redone a year later. I had ten months of open wounds due to the Ehlers Danlos Syndrome the first time around and six months of open wounds after the revision. I spent about 30 months unable to walk without assistance. Immediately after the initial surgery, I had begun six months of chemo and watched my husband relapse into a heroin addiction he had kicked before we had met. I sent him to rehab twice, but when he slit his wrists in our living room while I was out at one of my doctor’s appointments, we parted ways, for all of our sakes and personal battles, and for my son’s safety.

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The chemo was difficult. I had allergies to two of the three drugs (Adriamycin, Taxol, and Cytoxan) and had to keep stopping treatments here and there due to my counts going off-the-charts  low. It took me six months and I didn’t even finish the Taxol. The neuropathy had reached my face and my lips and I was left speaking as though I had been injected with Novocaine. The Neulasta shots were mind numbingly painful. It made my bone marrow swell, creating pressure from within my bones. All of them. Each injection would be followed by three days of not being able to shower due to the pain of mere water on my skin. During this time, I could not be touched by anyone. I had to take medication to facilitate long bouts of sleep. Simply existing, during that phase of the chemo cycle was the hardest thing I have ever had to do. I would sit and cry, unable to move. My mother would watch, wanting to hug me but knowing it would only make the pain worse. Nothing brought relief except sleep. I was grateful for my education in Psychology, for it was the miracle of a clever cognitive reframe that got me through this time.

I told myself repeatedly (like a mantra) that God was giving me a choice: either I could go through the chemo, or my son would have to. It wasn’t true, of course. It was merely a device that, when used repeatedly, gave me the courage to go get my treatment. Whenever I thought I couldn’t take it anymore, all I had to do was repeat this to myself over and over, and the strength came. There is nothing greater than a Mother’s love. Not even the pain of Neulasta. It’s tools like this that have kept me strong and resilient through the years.

I took Coumadin for two years for the pulmonary emboli. It was a constant reminder of that OTHER brush against death. I was already on borrowed time and lucky to be alive. Once dose-dense chemo was done, I started Arimidex hormone therapy, Lupron monthly chemo, and bi-annual infusions of Aredia. I stayed on this regimen for five years. Turns out I should have never stopped it. That regimen was keeping the cancer that was left in me from growing. Chemo saved my life just as much as it messed it up. I still struggle with neuropathy, pain, issues with the mesh implant from the TRAM flap reconstruction, chemobrain and migraines. I still often need assistance to walk. I own a motorized wheelchair and people who know me and are very used to seeing me in it during my roughest times.

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One of the complications from the TRAM flap procedure was requiring a plastic mesh to be placed in my torso. This proved to be a major annoyance to the point of placing me in a wheelchair or walking with assistance at best. I was like that for five years until the chemo all stopped. It took a year after that to build my strength and I did start walking again. I thought the nightmare was over and I could resume life. It had been a horrible five years. I had tried to reconcile with my husband for the sake of our child, which proved to be a bad decision, for he had never truly kicked his drug habit. I was also to find out later he had inflicted unspeakable physical and mental abuse upon our autistic child. I filed for divorce, got a permanent restraining order and bought a condo on the serene and beautiful Florida Intracoastal waterway. I took the time to focus on my child and give him the life we both neededstress-free, warm, and loving.

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I had desperately needed to rebuild my life. I was watching it being done all around me. I had come to know a small sisterhood of other young survivors through my involvement in David Jay’s SCAR Project. This was a healing experience that catapulted me into a network of others just like me who had to survive cancer whilst juggling kids or dating or divorce or grad school or all of the above (as I was). Young adult cancer is not the same thing as your grandmother’s cancer. You’re often the center of the family when you’re young and things fall apart when the center does not hold. Lives are shattered in the wake of cancer. My SCAR sisters were walking this minefield with me and we leaned on each other, sharing all of it: the good and the bad, the lessons, and the funerals. I was doing Reiki, drumming and chanting, and utilizing diet, crystals, oils, herbs, teas, roots, mushrooms, meditations, tarot, massage, and music. I had a whole program of wellness. I was a phoenix rising out of the ashes. I was tickled to have several media folks write articles about my outlook or shoot videos to discuss different things I was doing in recovery (drum circles, dragonboating, etc.). I had become a poster girl for young adults living with cancer.

I did get strong enough to walk on my own, become active with cub scouts, start to let my ministry and spiritual aspirations unfold, and even develop a social life in South Florida. I finished my degree,  I sang karaoke, I hung out at the kava bar, I camped with scouts, and I had acquired a nanny which freed me up for lots of “me time” for the first time. I even started dating again.

The Ehlers-Danlos proved to be a nightmare itself whilst I thought I was NED (no evidence of disease), and I at one point ended up in the wheelchair again a year after I had begun walking on my own. I had torn five different ligaments and tendons the first time I attempted water slides since recovery. This was a hard blow. I had fought to get out of the house and have a social life and it seemed like just months into me finally getting my groove back. BAM! Back to being sedentary at home. I fought to get out and forge a social life for myself, despite the wheels. I’d go sing karaoke since music always made me feel better. I’d go have some kava. Being social and falling in love saved me mentally from falling into a depression over my health.

Love went out the door literally however when cancer came back into the picture. To his credit, my boyfriend did try to come back a few days later and repair the relationship, but the decision had already been made. I was moving to New Jersey in the morning to be with my mother. Once again I found myself with someone I could not rely upon. Men who are equipped and willing to embark on a healing journey with their soulmates will forever hold a very special place in my heart because I have spent my life looking for that man. And I end up at my mother’s house every time, dependent upon her to care for my son whilst I buckle up and brace for the fight.  

Cancer 3.0 (Sona ~ 44. Sai ~ 9)

So, just as love walked out the door, cancer came in, took his shoes off, and made himself at home.

I was perplexed and angry at first when I heard there was cancer found in a breast that had already been removed. This wasn’t supposed to happen. We get mastectomies SO THAT this doesn’t happen. My oncologist told me with actual tears in his eyes how sorry he was and that there was a less than 1% chance of this happening. It was not common. I was learning that I was pretty much a candidate for all medical weirdness, anomalies, rare adverse effects, and flat out flukes of medical science.

This time around (what I call Cancer 3.0), I had my ovaries removed along with the cancer. It was clear that the hormones were fuel to my tumor. Recovery from this went far better than the previous surgeries. Protocols have also evolved over the last eight years. I have even received the radiation I should have gotten seven  years ago. They are learning that in young people, cancer is more aggressive. We are more at risk for recurrence and metastasis. I’ve seen it firsthand. I’ve buried a few of my SCAR Sisters.

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I have been living sincerely. I have been using diet, energy work, crystals, oils, natural medicine, meditation, and comedy, adjunctively with surgery and radiation. Cancer has brought many interesting practices into my life: drum circles, Reiki, crystal singing bowls, dragonboating, Jin Shin Jyutsu, Tai Chi, crystals, mantras, Ayahuasca, labyrinths, somatron chairs, play therapy and sand trays, and much more. I even play video games for Cancer 3.0 with storylines involving battling cancer cells. But I am NOT the happy poster child this time. I repressed my anger during Cancer 2.0 and this time I am going to express the full gamut of emotions. None of that “oh, just think positive” shit. Positive thinking and visualizations are awesome and I use them regularly as tools. But growling, releasing anger, and being honest about my experience (no matter what YOU may think of my outbursts) is what needs to be done so that I DON’T suppress it and let it fester below the surface planting seeds for another outbreak. Most importantly is  humor. I have learned how to incorporate my twisted humor and have been known to walk around in shirts that say things like: “Cancer only the pretty people have it.” My handle is “Chemo Kardashian.” I laugh at everything I can think of to laugh at, including myself. People so often comment on how good I look despite what I’ve endured. I’ve used the pop culture reference to the Kardashians to poke fun at the emphasis people put on looks over health.

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I’m STILL in the middle of a brutal divorce. Seven years post-separation and I am still mid-litigation! My soon-to-be-ex-husband even petitioned the court to prohibit me from treating my cancer out of state (going so far as to ask for my son to be remanded into foster care until I am better, which thankfully was recognized by the judge as a shitty idea). I deal with this and focus on rest and treatments.

Upon my return to Florida, I was slapped with litigation involving custody issues due to going out of state for treatment. Because of the costs of attorneys, and only having disability income to survive on, I have yet to have follow up scans done. My funds have gone to fighting the litigation and defending my son’s safety. I never thought I’d come across something that cancer had to take a back seat to. Hopefully soon this litigation will end and I can focus on my health. Plus with all I’ve gone through, I want to spend some time enjoying and relishing life. I’m waiting to exhale though, and hoping that rest and true convalescence is just around the corner.

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Where There Are Scars…There is Healing

[Today’s guest post is from my beautiful friend/SCAR sister Jocelyn. I met Jocelyn while producing and promoting The SCAR Project Cincinnati Exhibition. Jocelyn’s stunningly beautiful SCAR portrait, taken with her stunningly beautiful daughter, Nayilah. The cool thing about this portrait, is that it was actually taken during the Cincinnati exhibition, in one of the gallery, which we walled off and turned into a photo shoot area.]

Guest Post by Jocelyn Whitfield Banks

This blog is in tribute to The Scar Project and to that frightening, but awe-inspiring moment when I took off my clothes for fashion photographer David Jay, allowing him to photograph my scars from mulitple battles with breast cancer. In 2002 a diagnosis of an aggressive breast cancer prompted the decision for a bilateral mastectomy just 30 days after my 25th birthday had come and gone.

After a second diagnosis, seven reconstruction surgeries later, and hundreds of thousands of dollars in hospital stays I am in awe of the nearly 70 inches of scars running across my trunk, my abdomen, my hips, and my new breasts. The process at times has been exhausting, overwhelming and just plain tough. At other times it has been exhilarating, and encouraging to see the inner-strength that I have as I “dig deep” for the determination to beat cancer and not let it beat me.

Some would believe that all of those post-mastectomy scars might make me “damaged goods” but I’m a firm believer that those scars are an outward and physical sign from my body that says “I may be injured, but look at me. I am healing”… Where there are scars and cuts and stitching, there is inevitably healing going on in the body. The initial trauma is over, the wounds have scabbed over, and the production of collagen to repair all of these incisions is hard at work making the parts of the body that have been cut, moved, and stitched back together heal and find their new norm in both form and function. Yes, that dark railroad of lines running across me say to me that my body is healing and we’re going to be OK…

Baring my Scars for all of the world to see was the single greatest indicator for me that I was healing on the inside too. In the pictures of all of these beautiful women, their scars show the physical trauma they each have endured, but it is The Scar Project that captures and displays to the world, the emotional trauma inflicted by breast cancer. The courage, the strength and the determination required to fight this disease are one thing, but the courage to go forth and expose both your vulnerabilities and your triumphs to complete strangers are what makes The Scar Project images so moving, so riveting, and so awe-inspiring. That moment when I proudly shared my scars to show the world that “Breast Cancer is Not a Pink Ribbon”… Well that was the moment I realized that Where There Are Scars… There is also Incredible Healing happening not only on the outside, but all over the inside too.

Our children and our loved ones need an outlet for healing too. That’s why I’m so proud to be part of a nationwide effort to support families fighting breast cancer too. Visit Mommy Has Breast Cancer for more information regarding this great 501c3 charity and for ways that you can get involved in the fight too.

Cancer Fighting Princess

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

Guest Blog by Melissa Adams

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Welcome To The SCAR Project Blog

The SCAR Project is a series of large-scale portraits of young women confronting breast cancer shot by fashion photographer David Jay.  In the groundbreaking exhibition, this young generation of survivors reveals what is really beneath the pink ribbons. SCAR is an acronym: “Surviving Cancer. Absolute Reality.” Primarily an awareness raising campaign, it puts a raw, unflinching face on young women and breast cancer while paying tribute to the courage and spirit of so many brave young survivors of this disease. To view a slideshow of images on The SCAR Project web site click HERE.

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 young women with 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.

David Jay has been shooting fashion and beauty professionally for over 15 years. His images have appeared in a multitude of international magazines and advertising campaigns. Like so many others personally touched by the disease, Jay was inspired to act when a dear friend was diagnosed with breast cancer at the age of 32. Like the subjects themselves, Jay’s stark, bold portraits challenge traditional perceptions of the disease and capture the raw beauty, strength and character of so many extraordinary young women. Each portrait represents a singular, stripped-down vision of the life-changing journey that unites them all.

Breast cancer is the leading cause of cancer deaths in young women ages 15-40. The SCAR Project participants range from ages 18 to 35, and represent this often overlooked group of young women living with breast cancer. They journey from across America – and around the world – to be photographed for The SCAR Project. Nearly 100 so far. The youngest being 18 years old.

Although Jay began shooting The SCAR Project primarily as an awareness raising campaign, he was not prepared for something much more immediate . . . and beautiful: “For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their femininity, their sexuality, identity and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them and the strength to move forward with pride.”

The International SCAR Project Exhibition premiered in New York City in October 2010, then in Cincinnati and a second DC showing in October 2011. The SCAR Project will premiere in DC in October, kicking off breast cancer awareness 2012 from our Nation’s Capitol. This blog will follow The SCAR Project exhibition as it tours, David Jay as he continues to shoot the portraits, and will also feature interviews with The SCAR Girls.