[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 full—previous 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 belly—any 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.
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.
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.
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 needed—stress-free, warm, and loving.
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.
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.
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.
[As The SCAR Project Exhibition is en route to Rio de Janeiro, Brazil, where it will premiere this Thursday, today’s special guest post by Aussie SCAR girl Heidi Walker, seems an apropos send-off from Sydney, where The SCAR Project just wrapped up its recent exhibit. Heidi attended the Australian premiere. It was a beautiful moment in SCAR history for the exhibit to come back to where it all began, when SCAR Photographer David Jay’s dear friend Paulina was diagnosed with breast cancer. As good friends, he had taken her picture hundreds of times, but the picture he took of her after she had her mastectomy and then showed up in yoga class in her leotard and her new reality of having only one breast, changed things. For David, for Paulina, for all the women who would than contact David to have their portraits taken…for Heidi.]
Guest Post by SCAR Girl Heidi Walker
I am a dreamer. I love to sit with my thoughts, and plan and play, and let my mind wander into nothingness. The future, I just love dreaming about the future. Don’t get me wrong I think I can live in the now and I understand the importance of that “power of now” mind control, but daydreaming is what I do best. I’m happy there. Tuesday 7th November 2006 dreaming ceased. My world stood still and everything kept spinning around me. Reality was my only mind wander. Dark, cruel, harsh, messy, day-by-day, chemo-to-chemo, reality.
I’d noticed a lump, like a pea under my right arm on my honeymoon in the April. I really didn’t think anything of it. A couple of months past until I made my 1st Doctors appointment. I mean I was only just 24, no family history, and healthy.
Cancer just doesn’t happen to this under-the-radar girl.
The doctor agreed, “Just a swollen lymph node,” she said. “Cancer feels grisly; yours doesn’t,” she said. “You’re too young,” she said. Hmmph. By October I started noticing my right arm felt strange, tingly, and the lump had increased. I also felt another lump within my breast. Lump at ten o’clock, lump at eleven o’clock; the clock was ticking on this killer boob.
Those words “your results have been remarkable” make me giggle now. I don’t know what I thought the doctor was going to announce *Cue trumpet “amazing, remarkable golden nugget found within”. Those words confused me. Huh? ”Cancer cells have been detected.” Hold on, a little clearer for the blonde in the room, so, what you are saying is I. Have. Cancer?? *Cue river of tears.
So began this rollercoaster of life with far more twists and turns than I had imagined it would. The previous month, I’d trekked 42kms with my husband and in-laws. I’d just received my wedding album. And I’d resigned one job, to start a new one that would allow me to begin my dream make-up artistry course: *dream-life. But the month in front of me, I’d be having my right breast cut from my body. I’d begin In Vitro Fertilization, in case I became infertile from the six courses of chemo I’d begin.
And I’d throw out all my low cut t-shirts *Booo, add wig shopping to the to-do list, and wonder if I will live, or die.
I was so scared for the girl who would wake up from the anaesthetic, my first anesthetic. Would she be mad at me for taking her breast? Would she forget and not know what I had done to her until she looked down and saw . . . well, nothing but a scar? It was like another person would be waking up. Would I loose myself, along with my breast? I wasn’t sure.
For a while I think I disappeared, became a shadow of myself. I had to control my mind. No future dreams or plans. It felt like a tease to dream of what I felt I wouldn’t reach. Day by day, I just got by, holding on to a glimmer of hope that that dark shadow lurking over my shoulder would dissipate and the sun would shine again.
I stumbled across The SCAR Project accidentally. I hadn’t seen the images, only a small piece from David Jay about his project online. Four years post cancer, I wanted to do something meaningful. Something that might give other young women some hope that cancer isn’t always the end. Sometimes it is.
But I knew that all I wanted when I was first diagnosed was to see other young women growing older . . . having families . . . living . . . thriving . . .
Even though that isn’t always the reality. I never imagined that as I left David’s Bondi studio, a huge wave of empowerment, freedom, and acceptance would come over me. I felt as though I was truly honest for the first time.
This is me. I’m imperfect, but I am alive. Immortalized in print, naked from the waist up.
These images I now know well, my friends, my SCAR sisters. They often stare back at me from my laptop; they give me strength and inspire me when I need it. They are raw and deep; transparent. They are take-your-breath-away-beautiful & shocking. Young women like me. Like you.
These portraits recently graced the walls of the David Jones Elizabeth Street store, Sydney, my home soil. The space was beautiful Circa 1920’s, high ceilings and a soft golden glow pours through the tall arched windows. My breath was literally taken away. I stood staring into the eyes of Darling Jolene, with a lump in my throat and my eyes tingling. So beautiful, painful and honest. I saw Paulina the first of David’s portraits, starring down the camera fiercely; I saw her standing in front of her image, her past. She looks beautiful, fit, and healthy.
My husband and I attended the opening night, and I have been back a second time with my mum and sister. To share such a meaningful part of my life, my healing process with them was a feeling I can’t describe. As they walked around with me I shared these women’s stories, past and present, they were in awe of their courage. Some woman are smiling, even laughing, others are starring into your soul, another crying. Some are living on this earth, some have moved to the next world. I have seen these images before and been touched.
I look back on 2006 with mixed emotions. I was married, *smiley face. Breast Cancer happened, *sad-angry-confused face. But I feel lucky that I’m starring down the 8 year barrel looking back to what was, having faced the struggles that come with illness, disfigurement, life hurdles, and being a young woman. I never want to meet that C witch again, but l try to take away anything positive I can from this experience—or any tough experience—to learn what I can about myself, and about others. Breast cancer, well, it just was. I feel lucky that I can say that today. I hope I can continue to say that. It just was. It changed much in my life, altered a cruisey path. I am scarred, mostly scars that run flesh deep. But I am here now, living and dreaming.
It is with profound sadness that I must share the news of Barbie Ritzco’s passing. My deepest condolences to her family and all who knew and loved her. The SCAR Project has lost one of its most beloved and passionate family members. She will be deeply missed. xx ~David Jay
SCAR Barbie’s obit is HERE.
In lieu of flowers, her family requests, per Barbie’s wishes, that donations be made to charities Barbie was invested in, like The SCAR Project .
Here’s a video I shot of Barbie talking a little about her involvement with The SCAR Project at the SCAR Toronto exhibit:
Here’s a close up pic of Barbie’s tattoo. And since I don’t really know how to end this post so I will let that picture have the last word.
[Maybe you saw the above SCAR Project image when it went viral on FB in October of 2012. The post accompanying the picture asked: “How Many Likes? For this courageous breast cancer survivor?” Maybe you even liked it? Maybe you didn’t know it was one of David Jay’s SCAR Project Portraits? (The post didn’t mention him, The SCAR Project, or the woman’s name.) Maybe you wondered if the girl in that picture knew she got millions of Likes? (She did know, btw.) But maybe mostly, you wondered about the young woman in the photo—the 1000 words behind her picture. Today’s special guest post is by the courageous breast cancer survivor in that picture, which has been Liked and Shared and Commented on, around the world and back. If you happen to be catch one of the upcoming SCAR Project Exhibitions in Toronto or Los Angeles, maybe you’ll catch the girl in the picture, standing next to hers.]
Guest Post by SCAR girl Candice M.
Dog food, dog food… which should I get? Too many choices… Ring tone called Island Breeze sounds off in my pocket. I can’t even hear it, but because it’s called Island Breeze, I should have been transported to an Island. This is just my opinion; though my opinions never seems to take hold in ways I want them to. Technology. Hearing people always ask me if I set my phone on vibrate. I’m surprised they don’t know the answer to that so I say, “Yes of course then I put it right… down… “. At least I make them laugh. I see it’s a local number so I know it’s not a telemarketing call. Shoot, I hope it’s not the doctor. It’s too soon, he’s supposed to call, like… never. I fiddle with my hearing aid, am I gonna hear him? Oh I hear him alright. Well not the first time but I didn’t have to. He wasn’t going to call if there was nothing wrong. Silly me I thought he was going to make an appointment and meet me in the office like on T.V. Instead, he tells me over the phone, point-blank. Was that a 9 millimeter? Nope, AK-47. And there’s no dramatic fade in or fade out or music, not the whole town running in to see what was the matter, nothing just a big fat row of dog food at the pet store. Oh, Kirstie Alley if we could just go to a place where Nobody Knows My Name…
I scream. I can’t even remember what day that was. It was my daughter’s birthday, I think, or the day before. Oh fun. I also got pulled over, screaming all the way home, illegally calling my mother at the same time. Big black cop doesn’t know what to do with a screaming white girl in the middle of the ghetto but he does manage to let me know I ran a stop sign. I’m sure he loved my response, “I have CANCER what am I going to do??!?” Dumb look on his face…
“well… m’am you still can’t run a stop sign.”
He fiddles, he’s nervous, he doesn’t know what to do. Awkwardly, he slowly backs away from my crazy screaming and crying, and decided a ticket wasn’t what I needed at that time. Good for him, two people survived that day, not just one. I got what I call two chemo tickets in the following two months anyways. My head wasn’t on the road. How could I? My head was… am I going to be alive, will my child have a mother? Its amazing that I survived not just cancer but also my own driving. Yes, unfortunately for you, I still have my license. Yes it’s safe to get in the car with me, just not on days I’m diagnosed with cancer or in a chemo fog, ha!
I have angels watching over the car so don’t worry, come join me for a ride because this is one helluva rollercoaster ride. Stage III. Really?! Ok, I acted surprised, I tried not to be surprised, but I really was surprised anyways. Damned thing was supposed to be a CYST, not cancer!
The part of me that wasn’t suprised that it was so late-staged was because I had been trying to find out what was wrong with Ms. Leftyboobie since I was a kid.
Yes, I said that right, a kid… I told a doctor when I was 17 my breast didn’t feel right. Age 21, I told a different doctor that I was “leaking” fluids. Age 26, I went for a fibrocystic breast study, and no one saw a problem with Ms. Leftyboobie, really?! Then Ms. Lefty B decided to let herself loose at age 29, which led to a 6cm cancer retrieval at age 30 because I guess I was “old enough”. I don’t think I finished blowing out the candles.
Young ladies, you can and you are old enough for breast cancer, no matter what anyone tells you. I found a doctor who saved my life. He said, “I know you aren’t due for a check-up but I’m gonna check ya anyways.” I roll my eyes, oh puhleeeeze. He gets to second base, faster than anyone I have ever met… well, mostly everyone. *wink* I let him find it, I think, go, have at it, thinking he won’t do anything anways, I don’t say a word… instead, he freaks out and says, “You gotta get that checked!” I just glance at him, and with an air of boredom, I drawl almost a whine and ask for the millionth time, “Please, I want a biopsyyyyy.” He says, “Ok.” I say, “Did you just say ok?!” Doth mine hearing aid and lip reading fail me?” (I didn’t actually say that last part). He hands me the slip, I run off to a whirlwind of appointments. It’s just in the nick of time…
Because, here I am five years later celebrating my life and watching my daughter blossom into this gorgeous young lady (and no I’m not one of those parents that just says my kid is the cutest because my kid actually IS the cutest. I have evidence to back that up AND testimonials*.) I have to say going through all that and losing my breasts was devastating. But it taught me how to love myself better, to see that I’m still beautiful. I can prove it via The Scar Project. The photo you see is the very first time I showed ANYONE my scars. I had a little birdie, my breastie bestie, Jolene, who whispered to me that I could do it, and she stood by my side.
I miss her, and losing her still hurts me something good, but I would never trade meeting, loving, and knowing my Pink sisters, for anything.
I prefer to think that Jolene was reborn into this really amazing place with tons of loving people, cheese and crackers galore. I’ve met some really incredible people on this journey. It made my little deaf-brokenboobie life fuller, and worth surviving for. It opened up my eyes to a whole world that many people don’t understand or choose to see. I actually had people say to me, “I wish I had cancer then everyone would pay attention to me” and equally as shocking comments/statments. Also, I didn’t really get attention, instead, I was told by people, to get over it. Regardless, I would never want to feel so sick or so scared again, for any kind of attention.
Breast cancer isn’t a pink ribbon. It’s losing yourself, becoming so sick that your family gets shattered to pieces with you, rediscovering yourself, finding your words, discovering that hair does grow back even if curly and unruly, it does grow back. I ask myself every day could I do that again? I watch my friends doing it. I don’t know. It’s really that hard, so while you are waving a pink ribbon, instead go and really get involved. I had little to no support. Real pink ribbon support should mean help with cleaning, making meals, taking the dogs out, or helping me get out of bed on the days I was too weak to pull myself up, not just a piece of fabric or a specific color or logo. Donating money is nice, make sure you know where it’s going and what they are doing with it. But know what’s really fantastic? Food for my kid, and clean clothes too. Even more wonderful?? Someone to sit next to me for a little while so I’m not so scared.
I look over at my daughter who is sitting and reading quietly, yeah I definitely could do it again. She’s my reason for everything. I shove soy and vegatables at her. Thankfully, she welcomes the healthy food jumble that I foist upon her. She’s a beautiful soul, and a fighter too, but this is one fight I do not want her to face, and through The Scar Project, I am hoping to make that difference for her, not just to be my own voice, but to be hers too. I’m not who I was before, but I am still me (just waaaay better and sexier), and this is my new normal. I am not breast cancer and breast cancer doesn’t define me. Oh and one more thing, reconstruction is a choice. This whole “I love boobies” campaign isn’t the right path. Can’t we all say, “I love women”? That’s what we are trying to save here, right? I will end this with one of my favorite quotes from one of my scar project sisters, Keiko:
“I used to be sad about the scars that run across my chest; now I feel they are a roadmap on my journey of survival.”
*For the record, Candice is in no way exaggerating the ridiculous cuteness of her daughter. I met Sky at a SCAR LA fundraiser and fell immediately head over heels over this enchanting child. Holy crap, we all did. It couldn’t. be helped. She’s that stinking cute.
[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.
[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another woman whose [Surviving Cancer.] [Absolute Reality.] looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t know that no reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B? When I met Toni at the Cincinnati Exhibition I produced in 2011, she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story, and to share it here. Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. As The SCAR Project exhibition will be premiering in Texas this fall, it seemed fitting to lead up to that with the story of the Lone Star SCAR girl. As she is a science teacher, Part I dealt with the Gravity of cancer. Part II is likewise aptly titled Force.]
Guest Post by SCAR girl Toni G.
After being diagnosed with stage 4 breast cancer at 28 years old, I found my life moving down a new path, even as the geography of my body was being redefined. My dream of being a scientist and having my own lab was no longer a priority like it was in my before cancer days. Being alive, and enjoying life, was. Being a positive force despite the cancer, was too.
In the days and weeks that followed my diagnosis I felt lost. There was an abundance of breast cancer information out there but only a fraction of it was relevant to my situation. I tried to find information from other twenty-somethings fighting cancer while still finishing their degrees. And still dating. And without children. Cancer was forcing me to make some of the most difficult decisions of my life. Sifting through the mountains of information to find the right answers for me felt isolating, was time consuming and emotionally exhausting: Erosion.
One decision was what to do with the breasts that were trying to kill me. I knew without a doubt they had to go, but what would I put in their place? After meeting with a plastic surgeon I knew my reconstruction options on paper, but one size doesnʼt fit all. At the time, I knew I wanted breasts, but I couldnʼt picture what my new breasts would, or could, look like. Expanders? Implants? With or without transplanted belly/back/butt tissue? Another twelve inches of scars on my body? Tattooed nipples? I tried to find pictures online to help make this decision, but there were surprisingly few resources available showing real post-mastectomy pictures. Especially in younger women.
One day on the Komen message board a photographer named David Jay posted that he was looking for young breast cancer survivors to participate in “The S.C.A.R. Project: Surviving Cancer, Absolute Reality”. After an inquiry he told me he wanted to portray through photography the cancer experience by showing the visible scars that are symbolic for so many women. He wanted to show the world exactly what I had been looking for. I immediately knew I had to be a part of this unique awareness project. To help other young women who are feeling lost, facing the same reality. To be a positive force.
David and I decided to do a series of portraits….before and after my bilateral mastectomy as well as after reconstruction. In 2007 I flew to New York City with my sister just months before my surgery to do the “before” shot. A year later, after my double mastectomy I flew back to NYC with my father and took the “after surgery” shot. This picture shows my reality: burned from radiation, scars where my breasts used to be and those million dollar chemo curls. These are a few of the symbols in my SCAR portrait. And my sheer determination.
Part of my cancer battle plan involved a clinical trial where I had high dose chemotherapy and a stem cell transplant. With my immune system wiped out I was told reconstruction was going to have to wait a year due to a high risk of infection. A year of contemplating (and stressing over) reconstruction options passed. Then, in the short window of opportunity I had to have the reconstruction surgery, I was offered a chance to visit Peace Corps friends in Mozambique. Reconstruction was going to have to wait some more; I chose Mozambique.
Another year went by and I was still breastless. But by then I knew of other survivors, struggling with pain, necrosis, rejection, infection and many other complications that go along with trying to rebuild a part of your body from unnatural parts. The idea that reconstruction was the only way to go was starting to fade.
The SCAR Project evolved and in October 2010 I returned to NYC with all four of my siblings to attend the SCAR Project exhibition.
I remember walking up to the gallery and seeing the portraits that had become so familiar to me; I’d only looked at them a million times before that night. I felt an instant bond with my SCAR sisters. We shared our stories. We all had similar questions about life after cancer and it was comforting to put bits and pieces of the puzzle together. Especially since we were assembling it without knowing what the final picture looked like.
I didn’t know at the time the impact The SCAR Project would have on me, let alone the cancer community and beyond. I hoped it would change the way people viewed the reality of breast cancer. I hoped it would give women strength to know there is life after cancer, even if it is filled with jagged scars and a valley of doubt. I wanted to be one of those pictures that women could look at and relate. I wanted to be an answer that someone else was looking for.
My hopes for the SCAR Project continue to come true as the exhibit travels, and more and more people find out about it and are inspired by it. It is the powerful force I hoped it would be. And I am so proud to be a part of it.
In addition to NYC I’ve also attended the Cincinnati and Birmingham exhibitions. I’m thrilled it’s coming to Houston this October. Even more thrilled that MD Anderson, the place that played an instrumental role in saving my life, is hosting the opening night.
As far as that “after reconstruction” shot David and I were going to do? Well, I canʼt pinpoint the moment I made the decision not to have reconstruction, but it happened sometime in those years of waiting to have it. It’s such a paradigm shift to have been so gradual. I don’t think I ever really thought of no reconstruction as an option. Our society is infatuated with breasts. “Every man’s a breast man” and 1 woman = 2 breasts…not one or none.
My SCAR sisters have shown me, both directly and indirectly, that I donʼt have to have reconstruction. They encourage me to embrace the new me and to live flat and fabulous like countless other women. And two of my lovely SCAR sisters, Sara and Barbie, have started a Flat & Fabulous Facebook support group for women who’ve chosen against having reconstruction. I continue to find comfort in communicating with women who have walked in my shoes. That finding other women who have walked in similar shoes was so very difficult is the very reason the world needs The SCAR Project. I needed the SCAR Project. And I know I’m not alone.
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.
[Today’s guest blogger is no stranger to The SCAR Blog. When Facebook removed some of the SCAR images this time last year, Sara wrote an open letter to Mark Zuckerberg on her BLOG which I cross-posted here, with her permission. When quite a few of the SCAR girls were making preparations to head south for The SCAR BAMA exhibition, Sara wrote about it on her blog and once again I snagged it for reprint HERE (again, with her permission) because the SCAR sisterhood, which her article provides a lovely glimpse into, is one of the many beautiful things that has evolved from David Jay’s The SCAR Project Exhibit that many might be unaware of. When Sara got back from The SCAR BAMA exhibition, she wrote a beautiful recap on her blog, which of course also landed HERE, because she’s a generous soul like that, not to mention a dear friend. At which point I played both those cards in the latter part of the previous sentence and told her I thought with 3 SCAR blogs under her belt it was probs time for her to share her story. Of course, she did. And here it is. Thank you, Sara, love!]
by Sara Bartosiewicz-Hamilton
12/12/12…I call it my lucky day…the day my life started over. I had no idea how true this would be. Leading up to the 12th day of the 12th month of the 12th year, I was filled with anxiety, ready to have it over…at the same time, I wondered if I was sure. I kept telling myself, if ever I think I’m not ready, I’ll pull the plug…I still showed up. I started tearing up as the nurse prepped me for the surgery. She asked if I was okay.Yeah. She asked if I was sure I wanted to do this. Yeah. She said, it doesn’t make it any easier, does it? And that’s exactly what it was…I knew in my heart and my head it needed to be done…but knowing it, believing it, didn’t make it easier. Much like the beginning of this journey.
I was tested for a gene mutation in the fall of 2006. I knew I had a 50/50 chance of having the mutation…my spirit was prepared to hear I was positive. And I was. I was told I had the BRCA2 mutation and, through tears, I responded by asking the genetic counselor to set me up with what came next. She was confused. I was only 29, surely I could wait, surely I didn’t need to do anything until I was 40. Genetic testing was not new but it was not common yet either…I was the youngest person she had tested. I knew what I needed to do. I wanted to have a mastectomy. Take out the tissue that had an 85% chance of turning on me. Get it out, let me live my life. Let me give up this fear.
Fear. Our family tree of cancer explains my fear. In my mind, it was a matter of when, never a matter of if. I was surprised by some of the backlash I received from my choice to have a prophylactic mastectomy. I was naive. I was young. I didn’t realize there was a lot of fear behind that anger…sometimes, guilt. I couldn’t handle it so I shut myself away. I tried to find someone, anyone on the internet. My oncological surgeon told me she knew there were other young women choosing to have PBMs…I just couldn’t find any. I was isolated. Friends closest to me told me I shouldn’t do it if I couldn’t be happy. Happy? Was that what I was supposed to feel? I wasn’t sure what I was supposed to be happy about. This wasn’t a boob job. This was the removal of my body parts…my tissue ripped out of my body. And replaced…a plastic mound shoved under my muscle. A plastic mound that would grow over time as I was injected with more fluid, that would continue shoving my muscle around. And all of this to evade cancer…that may eventually come for me anyways.
A girl found me on MySpace. She was the one who told me about the SCAR Project and she asked if I wanted to meet her and a couple other girls in NYC to be photographed. I looked up the website and was speechless. I was looking at young women…I was looking at me. I immediately reached out to David Jay:
David~ I would like to be involved…I have never had breast cancer but have the BRCA2 gene (mutation). I had a prophylactic mastectomy at 29 because the gene (mutation) gave me an 85% chance of getting breast cancer. I understand your project is for women who have fought breast cancer but I thought I would volunteer in case you could use me as well. Regardless, I look forward to seeing the finished project. When I was getting ready for my surgery, I was desperately searching for what I would look like afterwords. I couldn’t find pictures of young women…this is powerful. Thank you.”
I was so excited (and terrified at the same time) when David wrote back and asked me to come. I wanted to participate because I wanted there to be a photo. I wanted the next 29 year old to be able to find my photo and be able to find the courage to have a PBM…to know she was going to be okay. I was terrified because I was going to be photographed. Because there would be a photo of me…there was going to be a photograph of my scars. There was going to be a photograph documenting myimperfection…
It didn’t help when I received an email that it may be best to wait. When I asked why, I was told he was receiving emails and he wasn’t sure what to think. I was devastated. And then I was enraged. I received a copy of the email because my sister went to bat for me and was sent a copy of the email:
Please re consider the shooting of Sara… She is Not appropriate for this project. she NEVER Had cancer. She only took off her breasts as prevention!!! Everyone in her friend circle and family knows that she is not stable to do this!!!! She does things like this for attention. Who??? Has a DOUBLE MASTECTOMY at age 30 when NO cancer is present??? Someone who is not STABLE. Her mother has NEVER had cancer. Her GRANDMOTHER has NEVER had cancer. This is not the same as your other candidates. PLEASE DO NOT encourage her behavior… Now. I say this with love but as you can understand MANY of us are tired of her charades. And having her half naked in a magazine for us all to explain to people who are AWARE that she NEVER had cancer in the first place. It makes a mockery of those women who have actually almost lost their lives.”
It was obvious to me this was not someone closest to me – my grandma did, in fact, have cancer, she had died of cancer. On the flip side, to be honest, I think it hurt so much because I wondered myself. Am I the only one who goes through a double mastectomy at 29 (ahem, NOT 30) without there being cancer present? As I tried to explain the untruth throughout the email, I expressed that I had been wrestling with guilt. Guilt that my choice was done out of fear…guilt that I was a sissy because I was too afraid to get cancer.
When I finally made it out to NYC, I had a lot on my mind. I had also received emails from this same person spewing ugly things. At that time in my life, I was unable to recognize that sometimes people are ugly because of what is inside of them…and it has nothing to do with me. I was unable to detach from their words, unable not to internalize them. While it didn’t stop me from going, it made me pause. Was I doing the right thing? I was the last girl to be shot that day. I arrived after everyone was done being photographed (read: dressed). I sat down and had my make-up and hair done and then it was time. The point at which I was taking off my shirt, it seemed like a really crazy idea. Other than my doctors, my hubby was the only one who had seen the scars and he saw them with the security of a dark room and, even then, I did what I could to hide them. I was asked beforehand to bring something that had meaning or relevance to my shoot. I brought a charm with a picture of my littles on it and I also brought a photo of my mom and two of her sisters. I had something which explained without words the reason for my prophylactic bilateral mastectomy and I had something to explain why I would choose this. David went with the photo of my mom and two of her sisters. I’m so thankful he did – for all of time, my photo explains the family ties and the multiple generations our mutation has affected.
Something happened at my photo shoot. Something I was not even aware of yet. I found a place where I belonged. A place of acceptance. A place of understanding. A place of love. I am forever thankful for my first SCAR sisters. They helped me embrace that my story was valid…they helped me see I was accepted into their “club” without having cancer. They helped pull me back on my feet when I didn’t even realize I was floundering. And they helped me grow taller that day. They were impressed by my courage and strength. I didn’t believe them quite yet but I held onto them, hoping they were right.
Fast forward a few years. It seemed surreal as I sat across from someone I called my best friend and heard similar words of ugliness being flung at me. Ironically, it was my five year “boobiversary” – five years after my mastectomy and I was being assaulted with words. Self-mutilator. In need of a therapist, not a surgeon. I had just disclosed I was planning on removing my implants. It was something I had been quietly considering for a while. I had not talked about it with many people: hubby, my plastic surgeon and with one of my SCAR sisters at the Cincinnati exhibit. I was having daily discomfort and pain and was hopeful that having my implants extracted would help relieve this. I was at the point of being ready to schedule the surgery and wanted the moral support of my friend…my “best” friend. I was caught off guard. The me who showed up for my PBM would have allowed this assault to continue until completion…the me who spent the past couple years embracing my new reality was strong enough to say stop…strong enough to walk away. Unfortunately, not before internalizing some of the accusations. I delayed my extraction for another year. I lived with the discomfort and pain as I searched my soul. I couldn’t deny what I was feeling but was I sure having my implants removed was the right choice?
I was back in Cincinnati when I had the courage to say it was time. I came home and the first conversation hubby and I had was that I wanted to schedule the extraction. It seemed like more than coincidence, perhaps a sign from the universe, when I was opening the mail immediately after our conversation and I opened lab results from my doctor confirming an autoimmune disease. When I had my pre-surgery appointment with my plastic surgeon, it was both amusing and sad to hear my plastic surgeon ask me what had taken so long. He told me he could tell this was the right choice for me…over a year before.
Fast forward to 12/12/12. My life truly did start over. When I woke up from surgery, the discomfort was gone. As my body healed, so did my spirit. I noticed I started looking at myself in the mirror without the little black box to censor what I was seeing. I realized I was the most comfortable I had been in my own body since my mastectomy. I found myself forgetting about the extraction and am no longer reminded daily of my surgeries, my BRCA mutation, or my lingering fear cancer will find me. Life started over, no longer hindered by the past.
I have been incredibly blessed – I always had someone in my corner. And, as my journey progressed, that corner became fuller and fuller. I choose to include the pain and judgment of the past because it is, unfortunately, what many women in my shoes continue to hear. However, while those hurtful words have no power over me, they give me the ability to reach out to someone else and say, I understand. I heard that too. I am hopeful that sharing will also help those who would place judgment to step back and recognize, it’s okay if you would never make the choices I made but it doesn’t give you the right to try to say you could live my life better than me. When I look back, I remember vividly the isolation I felt before my prophylactic mastectomy and again, feeling in the extreme minority as I was considering my extraction. I don’t ever want any woman to be completely alone. I recently started a Facebook group with my fellow SCAR sister Barbie – it’s called Flat & Fabulous. We are actively on the hunt for our fellow sisters who have had a mastectomy and, for one reason or another, do not have reconstruction. It has been both validating and heart breaking as I get emails from a stranger telling me she never knew there was someone else like her. Our page offers support, encouragement, and LOTS of laugh as we all go forward with living our new reality.
I recently wrote about The SCAR Project Exhibition in Birmingham and Joules texted me to ask if I would share my article here on The SCAR Project blog. About five minutes after she told me it was up and asked me to proof it, I received another text that said now that I’d written for the blog THREE times, but had yet to share my own SCAR story… “it’s time.”
So, this is my story. It spans over my lifetime. It starts at my mastectomy. And again at my extraction. I am incredibly thankful for the lessons I’ve learned along the way about love, friendships, life, and what is truly important. Trying my best to Live Sincerely.every.single.day.
[Follow-up guest post and recap of The SCAR BAMA Exhibition. This article is posted with permission from SCAR girl Sara’s blog and that link can be found HERE.]
by Sara Bartosiewicz-Hamilton
It has been over a week since I got back…it has taken me this long to try to digest it. I think I have been avoiding it because I am left with so many questions and so many hopes…and yet I know the reality of the situation as well. I apologize in advance for the bouncing around that is about to occur. You’ll get two gold stars if you follow me to the end…
I honestly did not plan to go to the exhibit in Birmingham, Alabama. It was three weeks after my extraction. Before my surgery, I assumed I wouldn’t be ready to be in front of people…after surgery, I thought I wouldn’t be feeling well enough to go. But then, Billy posted in the SCAR girls page that he had just booked tickets for himself and Vanessa. I should have known in that moment.
I first met Billy and Vanessa in Cincinnati. Billy is the ultimate host and Vanessa is the epitome of glamour. Hubby and I talked on the way home how we wished we lived closer because we enjoyed their company so much. Who doesn’t love a couple who hike all over the city trying to find you food, only to have to pack up and hit a White Castle and have lots of laughs while doing it! It was shortly after the exhibit that Vanessa started to decline in health, her cancer had returned and had spread to the lining in her brain…and then her brain.
|Live Sincerely party on the Purple People Bridge|
Vanessa has a motto – live sincerely. She started posting more and more about this motto, what this means. She and her sisters developed a website. And then she invited everyone to a Live Sincerely party on the Purple People Bridge. To be honest, I wasn’t sure what to expect that day. Vanessa was going through treatments…major treatments. I am quite certain I was one of those lame people who talked louder so she could understand me because that was so helpful…and I was uncomfortable with both Vanessa and Billy, unsure of what to say, and kind of hung out in the background. In reality, I was struggling with a few things that day. But that day was a turning point for me. I was truly trying to take one day at a time and was still having a hard time doing so. Watching the interactions and the love…watching the intent. It moved me deeply.
|Live Sincerely – spelled out in luminaries|
In the fall, the same gallery that hosted the SCAR project hosted Angelo Merendino and his exhibit, The Battle We Didn’t Choose. Vanessa had traveled to Cleveland and loved the exhibit and Angelo. It was brought to the gallery for her birthday. It was so special to watch Vanessa. It was hard not to notice the obvious connection between Vanessa and the exhibit. It seemed as though Vanessa was showing the rest of us what daily life might be looking like for her and Billy. I talked with Vanessa about what her favorite photo was…her all pink accessorized outfit…Live Sincerely (of course)…and watched her delight as she looked down to see the luminaries spelling out her motto.
|The beautiful birthday girl|
What do you get a birthday girl who is Stage IV and trying to show the rest of us how to embrace life and live sincerely? I couldn’t come up with a great idea so I came up with a dumb one instead…a life size Hello Kitty balloon. I was kind of worried it would scare her…thankfully, it didn’t and thankfully it didn’t terrify their dog and I found out in Birmingham Hello Kitty is still going…not too strong but her head is still inflated…um, that’s three or four months later?!? That’s the best dumb birthday gift I’ve ever come up with.
I will be honest…every trip I have gone on, I prepare myself that this will probably be the last time I get to see Vanessa. I go into it thinking this and I think this is why I become so awkward around her. I don’t want her to know I am thinking this…so I act like a kid trying to hide something naughty they have done.
This trip, it was different. Maybe, I am different. Since that day on the Purple People Bridge, I have challenged myself to think differently. To truly see the blessings, no matter how big or small, around me. To truly live in the moment, not in the past, not in the future…live in the present. So, for me, although at that moment I didn’t realize there was a shift in my brain, I saw Billy’s post and saw an opportunity to spend precious time with someone who has tremendously impacted my view on the world. It also seemed fairly miraculous in itself – I cried when the DC exhibit had been postponed because, in all sincerity, I thought it would be the last exhibit Vanessa would have been able to attend. So, here was the Birmingham exhibit and Vanessa and Billy were going. I woke up the Friday before with a sense of needing to be in Birmingham. I am incredibly thankful I listen to my spirit…I am incredibly thankful for a husband who supports me listening to my spirit.
|Vanessa & me with Flat Jolene|
My mission in Birmingham: Project Vanessa. I took the opportunity to be with Billy and Vanessa seriously…as serious as one can be when Billy is in the room. I felt incredibly blessed to be in the same state as them for multiple days, let alone the same hotel. And, lest anyone become concerned I was stalking them…well, I kind of was? But it seemed like they were both fairly okay with it.
When I first saw Vanessa in Birmingham, she looked so healthy. Yes, I see she looks different than when I first met her but she also seemed less tired or worn down than when I have seen her this past year. It took me by surprise, actually. And it made me pause…I had already been struggling with my thoughts. Over the past year, as I mentioned, I kept seeing Vanessa and thinking it was the last time I would see her. I began to consider that I was counting her out and she is still here. It frustrated me…I don’t want to do that…and I know Vanessa wouldn’t want me to do that.
It reminds me of a time in high school. I was brought to a hospital about an hour from where I lived…I was brought there to say goodbye to an aunt who had ovarian cancer. I was too young to remember how long she was in that hospital or how long it took but my aunt is alive and well today. And I began to wonder…why have I stopped believing in miracles? Why have I automatically assumed it won’t happen? I know I believed it couldn’t…I am unsure what I believe today.
|He was supposed to be taking the photo of Vanessa and me…BILLY!|
Vanessa was anxious to get to the gallery…we all were. Unfortunately, my group got a bit…well….lost. So, by the time we made it, Vanessa and Billy were on the hunt for food…Project Vanessa was not going well! (I just wondered, perhaps Billy had his own covert mission: operation avoid me!!) It was probably a good thing my group was so late…it made it much easier to find a spot to hide as I cried. It is a regular thing for me…surrounded by the beauty and strength of my SCAR sisters photos resorts me to tears. This time, it was a bit different because I feel different…as if those sisters are the only ones who truly can understand where I stand today…and a bit of gratitude mixed in…sensing I was exactly where I was meant to be in that moment.
Thankfully for me (and Project Vanessa) some of us met for dinner. I made myself a nuisance and sat directly across from Vanessa and Billy. It was the first of many conversations Vanessa and I (and Billy) had over the weekend. Yes, there were times where she repeated a story…like telling me about the leg warmers she was excited to have for the exhibit and thought she had misplaced. But it didn’t bother her when she asked me if she had told me about it yet and I answered honestly, yes. We just moved on. I watched as she took pictures…I don’t know how to describe it. It would seem almost like an OCD behavior but, at the same time, she was okay if she was encouraged to just stay in her seat and relax. I got to hear about her trip to Ten Thousand Villages to purchase ornaments for her nephews. She was so excited as she told me the process of picking them out (and getting to go in the back room to see the ones not on the floor yet) and how special it would be as they open them up even when she is no longer here. Yes, she openly says this…and, in a way, it was a relief – acknowledging this humongous elephant in the room. And, yet, we just moved on. I explained how I do the same thing with my kids – a special ornament every year and how they love it…every year, they are most excited to unwrap the ornaments that are their’s and hang them on the tree. Vanessa said she hopes it will be the same for her nephews.
Selfishly, I was relieved when she called me by name. Over the past year, I have assumed Vanessa didn’t know who I was. Yes, I met her before her health deteriorated but it isn’t as if we spent a lot of time together then. I have interacted with her over the internet but it isn’t the same. She has had a lot going on, she has been through a lot, it would have seemed totally normal to me if one day she looked at me and asked me who I was and why do I insist on following her around. So, to hear her say, Sara….it meant a lot…priceless, actually.
|Bacon lollipops – Vanessa gave them two thumbs up!|
The rest of the time, I just followed Billy and Vanessa’s lead. We ate breakfast together at the hotel. I got to see how Vanessa’s tastebuds might be a bit…off. It reminded me of the movie Elf (and yes, I told Vanessa and Billy this). Where Buddy (the Elf) puts syrup on spaghetti and is addicted to sugar. Vanessa made hot chocolate and then put sugar and cream in it. She ate waffles and needed cinnamon and sugar and syrup in each of the squares (actually, I have been known to try to have the same ratio with waffles and syrup). While Vanessa was eating her waffles, she talked about all kinds of things. I got to hear about the first time she met Billy…she talked about her wedding day and how Billy may come by being a smart alec quite naturally. It was so special to hear about all these memories Vanessa has…and interesting to watch her remember them but not quite remember if she had told me about those leg warmers yet.
At one of the breakfast dates, I asked Vanessa if I could look through her camera. After watching her at dinner, I knew her card must be overflowing. I wanted to get a glimpse at what she is thinking about, what is catching her eye. She graciously allowed me to look. It was fairly remarkable. I got to see the last several weeks of her life…some pictures that reminded me of the tag project but there were so many others that, well, they kind of took my breath away. What I saw must be what day to day life looks like when you actually pay attention. The details of a room…the artwork, the flower arrangements, the colors. The things we do to “finish” a look but then never pay attention to them again. Vanessa and Billy had gone to a restaurant called the Mellow Mushroom. Vanessa took all these photos of all these things in the restaurant. I went to the restaurant later in the weekend and it took me a bit to realize, I am sitting among Vanessa’s photos. She also had photos of an iron, standing up, laying down. Pictures like that. But I enjoyed the opportunity to see where her brain is at right now and watching it unfold in her pictures.
I tried not to pry. I asked how she slept, I would ask Billy how he was doing. When I got the canned answers, I let it be. I offered to take Vanessa with me to the store, I understood when the answer was she probably wasn’t up for it. I wanted to help and understood that helping might be just being present when asked. And I enjoyed every moment I could, listening to Vanessa, talking with her, helping her. It was beautiful.
|Vanessa reading her speech – that’s me holding the poster she made|
I watched with pride as Vanessa read her speech to the guests at the gala. Vanessa and I talked multiple times about how she didn’t want anyone to be upset she was reading her speech. She had written it beforehand because she wanted to be sure she remembered everything she wanted to say. I reassured her multiple times, people want to hear from you, they aren’t going to care that you are reading it. I was so happy when she gifted our new SCAR sister Leah with the Live Sincerely poster she had made. Vanessa was so excited about it. When I was arriving in Birmingham, Billy had texted me they were at a UPS making this poster. Vanessa had told me multiple times she would not be able to get it home and she wanted to leave it in Alabama with one of the local SCAR sisters. In fact, Vanessa was a bit concerned after her speech and after she explained she was giving Leah her poster that no one was coming up to take their pictures with it. Was Vanessa unaware of the people around her crying? the impact her speech had? I was too focused on holding that poster and listening to her speech and willing myself to think only about what was happening in the moment but I knew everyone was incredibly moved and just needed a minute to recover. Don’t worry, they will…they just need a minute. (And if you did, please make Vanessa’s day and go post your photos at her website!)
Even as I have been writing and rewriting this post…I have had a mix of laughter and tears. Much like the bitter-sweetness of the weekend, though, thankfully, I contained my tears to the one time at the gallery. Being thankful Vanessa was there, being slapped back to reality to hear Billy say it may just be him at the next exhibit.
I don’t have a grand finale for this post. In my mind, I still have many questions that may never be answered. Yes, I think about the miracle that occurred in my aunt’s life and I am now praying for the same miracle in Vanessa’s life. At the same time, I comprehend, as much as I am able to, how grim the situation is. Vanessa has cancer in her brain that is growing. The miracle of restored health, it might not happen. I am beginning to realize giving up on the belief of miracles may be a way in which to protect myself when it doesn’t come to fruition. Much like I have approached the times I have seen Vanessa over the past year as the “last time”. Because, if I prepare myself, it won’t hurt as much? In essence, it created a barrier between us and I am immensely thankful that barrier was not in Birmingham.
Perhaps, the weekend in Birmingham was the ultimate lesson in Vanessa’s guide to Live Sincerely. I got to spend an incredible time with her (and Billy) but I had to live sincerely doing it. There were no tears over Vanessa, there was no guarantee of a next time. It was living sincerely in the moment and being thankful for that moment.
|Clowning with my sisters|
Vanessa~ Thank you…from the bottom of my heart and soul, thank you. I love you~Sara
Updated to include a link to The Live Sincerely Project post in which Vanessa’s sister, Jessica, mentions part of my post. It is a great post that touches some of the same feelings I have…but be sure to check out the family photos at the end – hilarious!