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Cancer What?

[If you’ve seen the EMMY award winning SCAR Project documentary Baring It All by EMMY award winning filmmaker Patricia Zagarella, then you’ve already met the fabulous Sylvia Soo. She’s one of the fab four SCAR girls featured in the film. If you haven’t seen it… well… let’s just end that madness with the word “YET” —Ahem, if you haven’t seen it YET then it’s not to late! Just head over to your local Amazon by clicking HERE, then add it to your cart, press Proceed to Checkout, and voilà! Baring it All follows David Jay on an excursion from his life as fashion photographer into a world of young women scarred by breast cancer. Sylvia’s story, her absolute reality of surviving cancer as a young, beautiful, not to mention, fabulous, single woman, is not one most people would even think of when they think of breast cancer. For instance, Sylvia looks straight into the camera and says quite candidly, “How are you supposed to bring that up? Somebody asks you out on a date. Oh, by the way, I don’t have any hair and I have one breast.” Unfortunately, these days more and more young women are facing what  they, we, even many doctor’s, all “thought” was “our grandmother’s disease”.  That’s why The SCAR Project exists, that’s why David Jay takes their SCAR portraits, and that’s why these young women bare their scars. Sylvia and her sister SCAR girls face the camera the same way they faced breast cancer: with beauty, courage, style, grace, and fabulousness. Yes, it’s shocking to see breast cancer exposed like this, but… deeper than the shock… it’s inspiring to see what lies beneath the pink ribbons: S.C.A.R.s—not scarlet letters but badges of honor—these young women wear proudly and bravely bare in their SCAR Project Portraits. If that’s not cancer fabulous I don’t know what is. With that, I’d like to hand the microphone over to my fab friend Sylvia. Besides being fabulous herself, she manages the Cancer Fabulous web site where she encourages others to be cancer fabulous themselves, she’s working on a book called Cancer Fabulous Diaries, AND she has a short film called Dear Sister which is up for a prize for Rethink Breast Cancer’s Breast Fest coming up this November. All in a fab days work, yeah?! Anyway, please check out Dear Sister and vote for her fab flick HERE for the win! Voting ends September 14. So there’s still a few days left to stuff the ballot box for our Cancer Fabulous SCAR Sister Sylvia!]

Guest Post by the cancer FAB Sylvia Soo

I’d invited spoken word artist, Titilope Sonuga to perform at a charity event that I organized in 2010. She didn’t know me at that time, but by reading through my website’s (www.cancerfabulous.com) online diaries she was able to capture the essence of my motto “cancer fabulous.”

Cancer Fabulous

(written for Sylvia Soo)
By Titilope Sonuga

Be cancer fabulous
Be bruised battered
but never broken
down
fabulous
just be

carve a space
in this world
big enough
to love yourself in
even as they carve
through your chest
pump through your veins
wrap you in gauze
wrap yourself
in this
cloak yourself
in this
hold it up
like a shield
against your heart

impossible means
nothing to you

when the odds were
one in ten
one in a hundred
one in a thousand
you were that
one

that one who
clung to life
when it was easier
not to
dragged yourself
off bathroom floors
wiped the tears from
your eyes
last nights food
from your mouth
and did the impossible
refused to lay down
and give up
surrender or retreat

this is what beautiful
looks like

it is raw and uncovered
it is bald and stunning
it is twisted and tangled
It is a crocked line of scars
criss crossing
towards a heart
big enough to
love a nation

this is what beautiful
looks like

it is what exists
when we are broken
down past ego
or understanding
when we are faced
with a body that sends
distress signals
in the form of
a painless lump
when we are forced then
to cling to a soul
that refuses to
give up

this is what beautiful
looks like

So you bare your scars
for us to look upon
so that we can trace them
like maps
towards our own understanding

remind us that
there are no
treatments
for your smile

there is no
prescription
for laughter

there is no cure
for love

you remind us
what beautiful
really looks like

What beautiful really looks like

After reading the poem, one blogger wrote: “I honestly see nothing beautiful about cancer nor having to deal with it.” That blogger didn’t get it.

Yes, there is nothing fabulous about cancer. There is nothing fabulous about having your body scarred, having to take chemotherapy or puking in toilets. There is nothing fabulous about watching a loved one die. However, there is something amazingly beautiful and amazingly fabulous when someone goes through such hardship and turmoil with grace and strength. This is what cancer fabulous is about.

Perhaps it is media that has us thinking that cancer patients are weak, frail baldheaded aliens who are just waiting to die. These past three years I have met many inspiring people with such incredible spirit. These women are not ready to throw in the towel, but they fight for their lives. They have something to say. They are not willing to remain silent. Many of these women are subjects of the SCAR Project.

“There is something amazingly beautiful and amazingly fabulous when someone goes through such hardship and turmoil with grace and strength. This is what cancer fabulous is about.” – The fabulous Sylvia Soo

I chanced upon The SCAR Project during a 2009 Google search. I was 25 years old, and had just returned to Canada upon completion of an overseas contract. One week after I returned home, I was diagnosed with breast cancer. My surgeon gave me an option to choose a lumpectomy or mastectomy. Nights before my scheduled surgery I found the startling SCAR images, and I decided to have the mastectomy.

With one breast, I forged ahead with my summer. I stepped out into the chemo ward with my stilettos and I held my baldhead high. Time continued and the drugs began to take their toll on my body. I stubbornly mascara-ed the very few eyelashes that were left, and painfully slipped into my dignity. Those were challenging times.

While I was on-set of an independent movie, David Jay and I finalized my plans to fly to New York City and participate in The SCAR Project. Upon leaving set, I flew out to NYC. The photo that was chosen was a candid one (at the top of the page). I remember we were laughing at what someone said. I’m overjoyed that my picture does not depict sadness. My journey was much more than sadness.

These days you’ll find me working on my book, Cancer Fabulous Diaries, a collaboration with Rethink Breast Cancer; planning to become an entrepreneur in 2013, and always planning my next travel destination. Looking back on my life, I am amazed at all that I have been through, and excited for all that is to come.

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.

Breast Cancer is NOT a Scarlet Letter

[I met today’s guest blogger at the first planning committee meeting for The SCAR Project DC exhibition. I was instantly drawn to Lauren, not just because of her striking though gentle beauty (as you can see in her SCAR portrait below) but also (as you will see when you read her story) because she is a kindred writing spirit. Since getting to know her something else that really puts the L in Lauren, methinks, is best summed up in some lyrics she posted recently on Facebook: “Until the referee rings the bell/Until both your eyes start to swell/Until the crowd goes home/What we gonna do y’all?/Give em hell, turn their heads/Gonna live life ’til we’re dead./Give me scars, give me pain/Then they’ll say to me, say to me, say to me/There goes the fighter, there goes the fighter/Here comes the fighter/That’s what they’ll say to me, say to me, say to me/This one’s a fighter.”* Which is summed up perfectly, methinks in the slideshow I’ve added at the end of her guest post.]

Guest Post by SCAR Girl Lauren

Image

As a healthy and active young woman, I was under the impression or, in hindsight the delusion, that I was impervious to life-threatening illnesses or events. I simply believed that if I worked hard and was a good person that life would reciprocate in kind. So when I was diagnosed with breast cancer in September 2009 at age twenty-eight, while my husband was on his second tour in Iraq, you could imagine that my naive “vie en rose” attitude quickly shattered. I was left asking the question “why?” Why had this happened to me given that breast cancer is considered an affliction of the post-menopausal woman? Had I done something wrong during my early years (an occasional drink too-many in college) or did I have some genetic component lurking in the family pool that I didn’t know about? But like so many women slapped in the face by cancer, I didn’t have much time to dwell on these feelings. A bilateral mastectomy on October 16th quickly made me realize that shitty things can happen to good people and that there was simply no rationale for it.

Looking into the mirror for the first time after my surgery was a truly humbling experience and visually captured, for me, what “surviving” cancer really meant. That whoever I once was, I would never physically be again, that my new corporeality was an altered one that I would have to get used to. Removing the gauze pads revealed swollen water-filled pseudo breasts and bruises around my incisions. I no longer had nipples, but in their place I had angry looking scars. The one on the right ran the length of my breast and curved up toward my armpit in a smirk, a fitting visage for the “diseased” betrayer of my body. The left breast had a small straight line, like a mute partner guilty by proxy. I also had drains protruding from under my arms, the bulbous grenade portion of which was cradled in a little fabric belt that was slung around my waist. I felt alien, ugly and more like some macabre B-movie octopus than a woman.  As I inspected myself in the mirror, my husband drew warm water in the pink plastic basin they sent me home with from the hospital. He gingerly took the washcloth, soaped it up and helped to bathe me and wash my hair. I didn’t have the energy to do it myself.

I couldn’t believe the spectacle I saw reflected back at me and I began to cry. I never had to depend on anyone for this kind of daily activity and yet here we were. I get that in our marriage vows we agreed to be there for one another in sickness and in health, but I never imagined that we would test the theory when we were so young. Extremely self-conscious, I wondered how Mark felt to see my body reduced to something unfamiliar and bizarrely reconstructed. How could he find me attractive anymore when I was so changed, having lost those attributes which society deems so intrinsically feminine and esthetic? While such thoughts may seem superficial, addressing the feelings surrounding the physical alterations of my treatment really forced me to reexamine who I was aside from societal standards of beauty and worth. And though it has been a long and particularly emotional struggle to come to terms with my post-cancer body, what I’ve learned on my expedition through illness has been liberating and transformative – especially when it comes to David Jay’s The Scar Project.

I randomly navigated to the website one afternoon, curious as to what breast reconstruction looked like for other women my age. The first portrait I came to was this stunning image of a pregnant woman with a deep scar in place of her right breast, her fair skin radiantly contrasted against a dark backdrop. I remember how strong and unapologetic she looked. “This is who I am” she seemed to say to me from the screen of my laptop. At that moment, hope blossomed. I, who have yet to have children or to learn if that’s even feasible at this point, could now imagine the possibility that cancer had not usurped the opportunity of motherhood from me because there was Emily, as bold and brave as an Amazon, defying cancer and not only living life but creating it too! Her strength and courage, along with the photos and stories of other SCAR models (a shout out to Vanessa, the two Saras, Eliza, and Barbie) have inspired me to participate in the Project so that I too can do my part to increase awareness of young women’s vulnerability to breast cancer.

I consider it an honor to be a SCAR model; that photo shoot with David meant so much to me. For the first time in a long time, I felt beautiful and actually portrayed as who I truly am. I’ve since realized that my scars are not damaging scarlet letters of disease and imperfection so much as they are physical testimonials of my journey upon this earth. My experience with The SCAR Project has not only facilitated the acceptance of my wounds (physical and emotional) to find the beauty, grace and peace from within, it has also allowed me to transform my breast cancer into something powerful that will impact others. Whether that means showing young women with breast cancer that they are not alone in their experience or illustrating what reconstruction can look like – it definitely affirms that the reality of breast cancer has nothing to do with pink ribbons, commercialism, or walking until doomsday. All you have to do is look into a SCAR model’s eyes to grasp what reality is for the women photographed and to sense the collective frustration that we need to find a damn cure already. While I love my fellow SCAR sisters, there are already too many of us (including women in their teens, early twenties and thirties we’ve lost to this disease) for society to maintain the status quo of what they call breast cancer “awareness.”

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Breast Cancer Is Not Politically Correct

When the international SCAR Project exhibition premieres in Washington, DC this October, kicking off Breast Cancer Awareness Month 2012 from our Nation’s Capitol, the timing couldn’t be more perfect if it tried.

Besides pulling the proverbial pink carpet out from under October, the DC exhibition is also smack dab in the heat of election season.

“In the end, by bringing The SCAR Project to our city, we hope to make a strong statement about breast cancer by showing our country what it really looks like,” said Donna Guinn Kaufman, breast cancer survivor, former vice-president of the Tigerlily Foundation (supports young women before, during and after BC) and founder of the Kill the Cancer Beast Foundation (empowering people with cancer to fight), the organization spearheading production of The SCAR Project DC Exhibition. “We hope that The SCAR Project will change the way that people look at this disease, seeing it for what it is, terrifying, disfiguring and deadly, and as such, take real action to end it.”

Last month Kaufman and her planning committee of mostly survivors and previvors kicked things into high gear toward that end at their SCAR Project DC Exhibition Kickoff Fundraiser which was held at The Dunes art gallery. (Thank you for your gracious hosting of the event, Deidree Bennett, Fine Arts Director at The Dunes.)

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(Thank you to all the photographers who covered the event: Kipp Burgoyne, Marcus Bennett, Diane Crawford, Joey Darley, and Mayrev Mary Goren for all your lovely photos. And a special thank you goes out to Kristen Berset, WUSA9 sports anchor and reporter for her graceful emceeing of the event. Also to WUSA9 weekday morning anchor Andrea Roane for her gracious support of The SCAR Project DC Exhibition.)

If I were writing notes on cocktail napkins during the SCAR DC kickoff fundraiser, here’s a few of the highlights I’d have scribbled down:

Breast cancer is a political issue – SCAR DC Producer Donna Guinn Kaufman

Breast cancer is not prejudiced – SCAR girl Heather Salazar (caucasian) adopted her friend’s daughter after her friend (African-American) passed away from breast cancer. Then Heather was also diagnosed with breast cancer.

Breast cancer does not wait until you are “old enough to get breast cancer” – SCAR girl Eliza Hewitt who was diagnosed last year at age 22.

Breast cancer does not care if you are in a wheelchair because you already have Cerebral Palsy. – SCAR girl Sara Boghdan.

Breast cancer is not very patriotic. – SCAR girl Marathon Barbie the Marine who was diagnosed while serving our country in Afghanistan.

Breast cancer does not play fair. -SCAR girl Darcie who shared recent news of her breast cancer’s progression. (Cheers to your health, love, and godspeed beautiful Darcie, as you strive for stable disease once more.)

Breast cancer may SCAR but it does not define those who’ve stared down its ugly face and face their own absolute realities of surviving cancer. And yet, get a bunch of these crazy ass kicking cancer chicks in a room together sharing their SCARs and all I can say is cancer better watch out. One of these chicks is a marine and the rest of the women in the room have her back.

With that said, here’s the drill for the SCAR Project DC Exhibition:

Monday, October 1, the first day of National Breast Cancer Awareness Month, Kaufman is organizing a “Young Women Surviving Breast Cancer Day on Capitol Hill.” Kaufman is arranging meetings for any young women who can make the event to meet with their Senators and Representatives while young women in SCAR DC  t-shirts deliver invites for The SCAR Project DC Exhibition to members of Congress and and their staff on Capitol Hill.

Monday evening, The SCAR Project DC will host a VIP Reception/Press Conference by invitation only from 6:30 to 8 p.m. to kickoff the exciting week of DC Exhibition events and introduce The SCAR Project to the nation’s Capitol.

The DC Exhibition will open to the public the same day Monday, October 1 and will run until Sunday, October 7. General admission hours will be from 10 a.m. to 10 p.m. (except for during ticketed gallery tours with the photographer, Monday evening VIP Reception/Press Conference and Thursday evening’s Black & White Opening Night Gala). The price of general admission is FREE.

There will be daily gallery tours with SCAR Project Photographer David Jay, and when possible, various SCAR girls will be available for Q&A. Stay tuned for a schedule of gallery tours TBA.

A Black & White Opening Night Gala will be held on Thursday, October 4. Tickets must be purchased in advance on the Eventbrite link below. A special discounted price is offered for a pair of tickets purchased before September 1. Also a special “Buy a Ticket for a Survivor” at a discounted price is offered so no survivor who wants to go to the gala is left behind.

On Friday, October 5 after the gallery closes for the day there will be a special ticketed After Hours Party with the SCAR crowd.

On Saturday, October 6 Emmy Award-winning filmmaker Patricia Zagarella will be on hand for a special screening of her EMMY Award-winning SCAR Project documentary, Baring It All. Zagarella, David Jay, and a few of the SCAR girls will be available for a Q&A session afterward.

Tickets for all events are now LIVE  on Eventbrite-Click HERE.

For more info and/or to keep posted on The SCAR Project DC exhibition join The SCAR DC Facebook Group. Contact SCAR DC Producer Donna Guinn Kaufman at dgkaufman@killthecancerbeast.com or 703.489.2727.

Anomaly Yours, Eliza

[I met today’s guest blogger at her SCAR photo shoot in DC this past spring when the cherry blossoms were all abloom and decking out DC for its annual festival. How. Very. Apropos. Methought as I watched this beautiful, courageous, WAY TOO FREAKING YOUNG woman bare her S.C.A.R.s for the camera. At first glance, Eliza’s bright blue-eyes distracted me from the fresh red “angry scars”—as she calls them. Her absolute reality of surviving cancer is as different from mine as my scars are from hers. Mine have faded a bit, as I’m a wee bit (ok, OK… she’s exactly HALF my age but TWICE me in wisdom and stature) older than my younger survivor sister. Mine look more like Japanese symbols for WTF? and are therefore not nearly as angry—though I definitely see red when I see hers. I’ve read before that “the fragility of the cherry blossom is the fragility of human existence.” This was just poetry before I met Eliza. She is currently the youngest of the SCAR girls. Eliza just finished grad school in May and turned 23 in June. Oh, and is planning a wedding. While fighting cancer in her spare time, after being diagnosed earlier this year at twenty-freaking-two. She calls herself an anomaly. I just call her awesome. As I’ve gotten to know Eliza I’ve come to see that beneath that beautiful pale skin is fierce hope unfading, which the sunlight dancing upon it only highlights.]

Guest Post by Eliza Hewitt

 

Eliza and Thomas at graduation… and they’re off… planning a wedding for sometime next year… once she’s finished her Ph-freaking-d in chemo and radiation.

First of all, I should probably state that I’m only 23, a fact that I hope will shock anyone who feels that they are too young for breast cancer. Before my diagnosis, I was your average grad student working four or five jobs to avoid going further into student loan debt and working out the plans for the wedding of my dreams.

The discovery of my cancer has a tragically humorous story behind it. July of 2011, I decided I was fed up with my breasts. They hadn’t grown since middle school so I resolved I would subject them to a breast augmentation surgery. With a coupon for a free consultation in hand, I dragged my fiancé to the plastic surgeon’s office. I remember seeing a placard addressing the office’s policy on insurance covering the surgery if it was for reconstruction. So, as I’m sitting there waiting to meet with the doctor about a boob job, I remark to my fiancé, “Man, wouldn’t it would be great if I got breast cancer because then I wouldn’t have to raise the money for this boob job?” BOOM. There. There’s the awful punchline. I was a baby then and had no idea that the idea I said in jest was really a terribly callous joke that would come back full swing five months later.

Sitting on the exam table, the doctor found a pin prick of a lump on my right breast. He raised his eyebrows and asked if I knew about this. A part of me was embarrassed that my body could have something that could prevent surgery, especially since my regular doctor had not found anything during my annual visit two months prior. So I lied. “Of course, I know what that lump is,” I said. He told me to get it checked before the surgery plans could progress. I said that I would but already my mind was thinking that I would have to get back to work. Besides, I was 22. The world was at my feet and it was probably some dinky little cyst that would fade back into my body eventually.

So I sat on my knowledge of the lump for five months.

I filled my schedule with work and classes to avoid having to think about what the lump could be. In December of 2011, I had an unrelated surgery on my tailbone and a few days later, I started finding blood in my bra. Then, my skin felt hot and I noticed that the lump felt bigger. Oh no. Now, I’m going to have to call my doctor and admit the truth and growing evidence in my boob case.

Five months. It didn’t seem like a big deal.

In the end I couldn’t face telling my doctor’s office that I had avoided getting my lump checked out and now my boob was being weird, so I turned into a five year old and asked my mother to call. As she was describing my symptoms, it began to sink in how idiotic it was to think if I avoided something that it would go away. I call it the Ostrich Solution to life’s problems.

Five months. Is. A big. Deal.

The urgency in planning an ultrasound and then an ultrasound guided biopsy on the same day told a story that sent chills up my spine. When the technician slid her magic wand over my right breast, I thought someone had dropped a river pebble in my screen. There was a big black blob smack dab in the middle of my screen and I knew then that it was cancer. It had to be because nothing else can look as sinister. A week later, we got the official news. At 22 years old with classes to pass and weddings to plan, I had breast cancer. It was triple positive, meaning that it loved estrogen and progesterone and for dessert, it was partial to HER 2.

A week after my diagnosis, I had a bilateral mastectomy. I was my breast surgeon’s youngest patient. The night before my surgery, I wanted to see mastectomy scars. If I was going to have to wear the scars for the rest of my life, I wanted to know what I would see in the mirror. What I found was The SCAR Project. With each picture, I found stoic, resolved women who dared me to think them weak or pitiful because of their scars. These women were above their diagnosis and I took heart seeing their strength, even as my soul cried for all the beauty affected by breast cancer. It helped me through the night,  the surgery, and the breast surgeon’s finding: because of lymph node involvement, I was upgraded to Stage 2B.

A few months later, I fell into a deep recess of my former life and couldn’t bear looking at myself without the mirror being entirely fogged up. I emailed David Jay, never daring to hope that he would respond back. I had just gotten involved with the movement to bring the SCAR Project to DC and felt that my contribution would be in the background. I was satisfied knowing that I would help in this way. But David did email me back and the world opened to me again. He asked if I wanted to be photographed. I cried when I thought that anyone would want to take a picture of my scars that I despised even if they meant I was surviving. Here, my poor body was doing all it could to surmount the effects of chemotherapy and I could only see them for what wasn’t there.

When I met David in DC, I could barely breathe from the expectation that he would change his mind because as a 22 year old, I felt I should have had a youthful, unabashed spirit that wasn’t facing a life threatening disease. Had I never been diagnosed, I might have felt like a model off to a photo shoot.

David told me my scars were beautiful. At first, I rejected this thought thinking maybe he couldn’t see how harsh they looked in the light. But as he took picture after picture, I started to realize that my scars were nothing to be ashamed of. Yes, they made me different from other women my age, but they also made me more resolute and strong like all the women who had photographed before me and given me strength the night before my surgery. It is still hard to look at myself sometimes. I would be lying if I said the opposite. But through my picture and my involvement with the DC exhibit, I have made peace with myself and my scars. Because our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but living.

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Follow Eliza’s Adventures With Cancer aka her blog HERE.

Check out the story the NV Daily did on Eliza HERE.

Born to Laugh

[When I first saw my friend Sara’s SCAR portrait it immediately rendered me at a loss for words, which is not an easy thing to do. I mean, I may be crazy shy, but I typically have at least 23,587 words on the tip of my tongue at any given moment, all raising their hands like Horshack, screaming out: “Ooh ooh choose me!” However… they all stood still like they were playing the quiet game or something when I saw Sara’s SCAR portrait. I. Love. the Beauty. And the Bold. Which bursts forth from her picture like it’s rolling on the floor laughing out loud, and maybe even peeing a little, IN THE FACE OF CANCER—and—Cerebral Palsy, to boot. That’s how badass Sara B. is. And that’s why I couldn’t wait to finally meet her in person at the recent SCAR Project DC kickoff cocktail party. And that’s why I can’t wait till you get to meet her here as well. And that’s why I’ll just sit down, maybe grab a cup of espresso with a shot of Baileys, and let her hijack the blog today and tell you her SCAR story in her own words. With Sara’s permission, this is a repost from her blog, “Ready, Pink, and Able” which you can check out and follow HERE.]

Guest post by SCAR girl Sara B.

Exhausted. Actually, I’m in the spacebeyond exhausted.

That’s what I feel. I have been worried about this shoot and its implications for 3 weeks. I want to share the experience, and at the same time, keep special moments for my heart alone. I don’t really want to talk about the experience, and have been telling my friends that they have to wait until I’m ready to talk. The only reason that I’m blogging so soon is that I’m afraid that if put off, it’ll never be done.

Photo courtesy of Colleen Roche

What can I say about this day? I had a nightmare the night before about breast cancer and mastectomy scars, and then I shook for the longest time, I didn’t think that I would see the end of this day. I kept hoping that David Jaywould call me and cancel. I’m not that strong. Didn’t feel brave –just annoyed, fearful, and worried. I also knew that I wouldn’t back out of it; I see things through to the end. When I make a commitment, I believe in keeping it. It’s just the way I was made…When I’m in, I’m all in.

When David got here I announced, “It’s ME!!” He replied, “I know!!” as he kissed me on my cheek. OK. All ice melted at that point. David did his thing as he looked around, and I just tried not to faint or vomit.

Congratulate me. No fainting or vomiting!! AND you’ll be amazed. Taking off my top was pretty easy. I am NOT kidding. When it was time to take that part of this journey, I was ready. Who knew? Well, David did! He told me repeatedly over the last weeks that it would be fine. He was right. However, it was much more than fine. I was brave and David was patient. He knew how to wait for honesty. He waited for me and fearlessly took the shots. It was a privilege to be part of those moments. That shawl slipped down so many times; I didn’t worry about it. I was completely at ease. I accepted myself.

Breast Cancer is a serious subject. It’s a beast. It stole my breast. I didn’t convey any of those things during the journey that David and I took together. I laughed. Yes, I know. I’m just different. I laughed…and laughed…and laughed some more. I thought about it, and started to panic every so often during the shoot. I thought, “I shouldn’t be laughing. Breast cancer is a monster. Sara, don’t laugh.” Then, I would try to swallow the laughing and look to the camera. It was so unnatural! You can’t be yourself while you’re trying to swallow who you really are. The truth is that while breast cancer is horrible, and I have grieved the loss of my right breast, I don’t live in that place in my heart. The truth, if I’m really honest with myself, is that Sara laughs…she enjoys the freedom of laughter. I really do embrace my faith which tells me that I have been made in the image and likeness of God (Gen 1:26). David, in his wisdom, just said, “It’s OK to laugh, go ahead.” Those moments, when David gave me permission to be happy…honestly joyful, those were my favorite.

“I was born to laugh. I learned to laugh through my tears.”
-lyrics from “Born” by Over the Rhine.
Check out a link to the song HERE.

If you’ve read my blog before, you remember that I’ve said that I never thought I would reveal myself in an intimate way to any man outside my spouse (if I ever marry). I just know instinctively that I can only be vulnerable like that if I’m in the presence of love. That is still true. The shoot didn’t change that at all. You see, when I looked at David’s face, I saw love reflected back to me. Now, make no mistake here. There are many different shades of love. I’m not in love with David nor he with me. (Although, I can certainly understand why women would fall for him.) The love that I saw in his face was his humanity truly connecting with mine. I know I didn’t imagine it. It’s probably one of the most wonderful times of my life. It brought tears to my eyes later. I had been loved, and not in any way that I expected. I never thought that I would meet a fashion photographer, let alone that I would find love in his face. Yet, it really happened. In fact, the love in that room helped me survive the moments in between the shots, when I needed to wait for my muscles to relax. I couldn’t stay in the same position for very long, and I just begged to be allowed to move. Cerebral Palsy is betrayal of the highest order. My body’s movements and spasms are often not voluntary, and pain is a frequent albeit unwanted guest.

The only troubling part of the afternoon happened when we finished. I sighed and exclaimed,”We’re done, and I’m never doing that again!” I was wholly unprepared for David’s response. He explained that if he didn’t get what he wanted in the shots we had, then we would shoot again. Umm…David…I never said that I would agree to do this again. My heart sank through the spokes of my wheels. I was convinced that he must not have gotten what he needed. I had let him down. I had let all people with disabilities down–never mind myself and the two friends who were present. Talk about pressure. Let’s be real. We had an incredibly talented photographer and we had me. If one of us had ruined the shoot, who would you bet did it?

OK. so it’s all moot now. Just look at his photo. Look at the abandon with which I threw back my head. Breast cancer took my breast, and it very well may take my life someday. It will never own me. I am free. Thank you, David, for being my witness.

Sara with SCAR photographer David Jay at the recent SCAR Project DC kickoff cocktail party (photo courtesy of Koryn Hutchison)

“Breast cancer can kiss my…gorgeous, full laugh! So there.”
-Words to live by, by our very own Sara B. aka the silliest coconut EVER

“Baring It All”, The SCAR Project Documentary by Patty Zagarella Wins an Emmy Award!

Tune in to (or TIVO) the Emmy’s this Saturday to see Patricia Zagarella’s Baring It All take home and Emmy for her groundbreaking documentary about The SCAR Project!

Bravo to Style Network’s Taylor Hennessy, “Baring It All” Co-producers Nicola Bates and Patty Zagarella (also director and filmmaker), and SCAR Project Photographer David Jay for the win!

“Baring It All” follows fashion photographer David Jay, into the worlds of four young breast cancer survivors, exploring their journeys and being photographed for the SCAR Project. “Baring It All” portrays what: [Surviving Cancer. Absolute Reality.] Is really all about, for them (and for the more than 10,000 young women like them, who are diagnosed each year).
“Baring It All” uncovers what’s beneath the pink ribbons. To view trailers for Baring It All click here and here.

In the rolling out of the red carpet for Saturday night’s Emmy’s, I interviewed “Baring It All” filmmaker Patricia Zagarella. So without further ado, how about some lights, camera…and action (cue up the first question, enter Patricia Zagarella for the answer parts):
Q: First of all, congrats and namaste on the Emmy, Patty! How cool is it to win an Emmy for a passion project like The SCAR Project?! 
A: This is the most incredible honor BUT the award really belongs to all the courageous young women who participated and to David Jay.
Q: How did you find out about The SCAR Project?
A: David Jay and I have a mutual friend, who was visiting NY from Australia. She randomly bumped into David while on her visit and he told her about the Scar Project. She then sent me a link and my co-producer, Nicola and I, were blown away by the photographs – the beauty and the pain, every image and every woman’s eyes screamed a different story we wanted to learn more.
Q: What inspired you to start filming the documentary?
A: When I first saw the SCAR Project I was captivated by the raw reality conveyed by his photos. Striking and beautiful, yet confronting and almost brutal, they pushed me to a place I normally contentedly avoided. I was both shocked and saddened, but drawn to the images like a magnet. Despite that the photos spoke volumes, I had a barrage of questions screaming in my head, not only about the young women in the photographs but also about the photographer: Who was he? Why was a successful fashion and beauty photographer photographing young breast cancer survivors? Why did he embark on this journey and what motivates him to continue?
Fascinated, I reached out to David Jay – who reached back with enthusiasm and warmth. I then met a genuinely kind and caring man, whose world had been turned upside down when confronted by a close friend’s body after a mastectomy. He told me that he dealt with it the only way he knew how, by taking her picture. And the rest is history.
Q: Can you describe the process, and the emotions of filming such painful images? (ones that most breast cancer patients haven’t seen before they have a mastectomy–hopefully The SCAR Project will change that.)
A: We were an all female team during the photo shoot sessions, our goal was to be unobtrusive and document the event, what we experienced was a palpable transformation taking place before us. Women would come to the door broken and nervous and by the time they left, they had a renewed sense of pride, hope and strength. Every single woman exuded beauty that came from her resolve and attitude, which David captured perfectly.
It was a very special experience, albeit a tough one, being able to capture this transformation, to be able to share in the anguish, the pain, the tears and the laughter.
Q: What were some of the hi-los of filming this project? What surprised you most about filming “Baring It All”?
A: Meeting and spending time with these amazing, strong young women has been an incredible high. I have been touched in a profound way by all the women we met, and I’ve learned so much from them – celebrate life and live in the moment. I remind myself of that daily.
The lows have obviously come when confronted with beautiful young girls struggling to beat this horrible disease.
What surprised me most was the enlightened attitude of such young women and their strength in the face of their mortality.
Q: How did you get into filming?
A: I started working in TV & film in Australia after graduating from University. My first job was working at a TV station and it just went from there.
Q: What do you consider your particular calling in the film industry to be?
A: I enjoy producing, finding compelling stories and character, and then finding the right team to execute that story. I really love meeting people and learning about them, and under the pretense of filmmaking I get to ask lots of questions most people are afraid to.
Q: What other film work have you done?
A: I started working in narrative features, but then about 7 years ago I was presented with the opportunity to co-produce a documentary, and from that point on I was hooked. I loved telling real stories by real people. Who needs a script, real life is far more compelling, heart-warming, and heartbreaking.
Q: The doc was originally titled “Don’t look away”? How did it go from there to “Baring It All?”
A: The doc was originally titled “Don’t Look Away”, a title Nicola my co-producer came up with. We decided on that title early on because people’s initial reaction at hearing about the subject and photos was to look away. The entire message and point of the project was to remove the stigma and normalize something that so many women undergo but no one ever sees or talks about. We wanted people to look at the photos, look at the women, at the scars, and at their eyes. The name was changed when the Style Network came on board as they felt that “Don’t Look Away” didn’t adequately describe what the film was about. After much back and forth, we settled on “Baring It All” as the new title.
Q: How did the Style Network come on board with the documentary?
A: Two great women, Beth and Andrea from Remarkable Content took my trailer to the Style Network about a year before they actually came on board. The VPs at Style thought it was an important story to tell and one that their viewers could connect with, however one-off documentaries were completely out of the realm of their usual programming that it just didn’t work. They came back to me about a year after our initial conversation and the VPs had come up with an over-brand series called Style Exposed, which would include one-off documentaries. “Baring It All” is the first in the Style Exposed series. Hopefully  tonight’s success for Style compels and propels them to continue to produce one-off documentaries with heart.
Q: Is the documentary available on DVD?
A: The DVDs are available through Amazon. The SCAR Project, Volume 1 book is also available on Amazon.
Q: How would you articulate the message you hope people get when they view your doc and the SCAR Project?
A: I want people to see that there is true beauty in strength and hope in the face of despair. There’s power in optimism and it’s ok to have scars and to look at them and let people see them.
In line with the SCAR Project message, the goal is to raise awareness and let people know that young women can and do get breast cancer. Early detection is the best prevention, therefore the more people who see the film or the SCAR Project photos the bigger the impact.
Q: How can people follow you, support the amazing things you are doing like this documentary?
A: People can keep up to date with my work via my website atwww.lostinvision.com or via Facebook.
Q: What are you doing next?
A: I’m developing a project that deals with alternatives to incarceration, with a focus on young women who are at risk, and we hope to help transform their lives before it’s too late.
Q: I have to ask… did you sleep with the Emmy? I mean… who wouldn’t?
A: LOL those wings are spiky! It was a night to remember! I’m on cloud 9 and SO PROUD of everyone involved with The SCAR Project & Baring It All, especially the amazing, powerful and beautiful young women living the reality of breast cancer, thank you for sharing your stories.
Q: Not really a question, but I’d just like to thank Patricia for a brilliant interview and also say “go break a leg!” in re: the “Baring It All” award at the Emmys this Saturday night. And I’ll just go ahead and say BRAVO! because I know it’s going to, as The SCAR Project intends: Raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens. So kudos Patricia. Cheers and kudos.
I’d also like to give a little shout out to Cincy SCAR girl Vanessa Tiemeier’s sister, Christina Blust, whose music plays the soundtrack to her sister’s SCAR story in Baring It All. Click here for more of Christina’s music.

Jolene’s SCAR Story – Part II

To be so young and yet to have made such a splash and so many ripples of love.

[I didn’t want to leave Jolene’s story at the addendum from the previous post… because, although we know the end of her cancer story and that she is resting in paradise—as her brother puts it, or causing chaos among all the angels—as one of her friends posted on her Facebook wall . . .  Jolene’s story is far from over. Her SCAR portraits, her memory, her mama, all those of us who love her, and Flat Jolene, continue kicking cancer’s ass and taking names, fighting like our girl Jolene. In other words, she made some ripples down here while she was with us. I like to think it makes her twirl with delight to watch all those ripples of love she created making the universe feel like it’s a small world after all. While we can only sit here star-gazing—and surely Jolene is on the tip of the archer’s bow as he aims for that damn crab—Jolene is. still. making waves. But you, savvy reader, I know you already knew that, because you have caught a glimpse of our lovely Jolene. Plus, I figure you caught the “Part I” in the title of the previous post, and therefore caught on that there was going to be a sequel. So without further ado, here is Part II, written by Jolene’s (and my) dear friend Mary Carpenter. Thank you, Mary. You make pretty ripples too.]
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Mary star-gazing.

The Gifts We Leave Behind
Guest post by Mary Carpenter
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If we are wise, we live a life that fills not only us, but those with whom we share it a trunk full of memories. Sometimes we are not wise, though. Sometimes we are frightened and we hide from the pain, uncertainty, fear, and loss. We crouch in the darkened corner believing that we cannot bear one more trauma in our lives. And then, light peeks through the curtains and tiptoes over to that corner and taps us on the shoulder. It beckons us to draw the curtains open and embrace the sun that warms us . . . the clouds that make us dream . . . the rain that nourishes us . . . the wind that bends us . . . and live the life that awaits us.
Jolene did just that. She flung back the curtains and opened wide the window that brought her into my life and the lives of many others. She left not just a trunk filled with memories, but a garden filled with gifts for those she left behind.

Jolene (on the right) next to her lifelong friend Star

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Jolene began planting the seeds in her garden as a child. Perhaps then she wasn’t mindful of the seeds she was planting. She was just being herself… genuine, kind, considerate, loving, and funny. All of those attributes continued nourishing her garden as she and it grew and blossomed. Then the storms began to blow through Jolene’s life and she learned to bend with them gracefully instead of break. Those storms scattered more seeds throughout Jolene’s garden as the dew dripped from her petals and she was courageous enough to share them with us.
When the blades of the gardening sheers cut her stem, she found solace in a garden of flowers who had met the same storm called Phyllodes. Together, they nourished one another and strengthened each other’s roots. They, along with many other flowers who had been caught up in the cancer storm cultivated the soil of friendship in the garden.

Jolene surrounded friends and family

In the last few years of Jolene’s life, she was awed by the gratitude of these flowers not realizing it was they whose soil was most enriched by all she taught them with her honesty and appreciation for even the minutiae of life.

Her wit and charm endeared even the weeds to her, but she would not succumb to their negative forces. She continued reaching for the sky and striving to make something beautiful out of the storm that became a hurricane; sometimes subsiding, but never completely diminishing. She opened wide her leaves and petals to share the remnants of the storms’ damages with the world as part of The Scar Project. She wanted the spotlight of the world to shine down on this garden and see that not one ribbon grew in the garden. It was a garden where only flowers grew who had been changed by the blades of the gardening sheers and sometimes even pesticides that would cause petals to shed from the stamen. In this section of the garden, every flower was merely a seedling and Jolene was one of the youngest to sprout here. In her own words, she felt it was the place where her voice would still be heard after she was gone.

Jolene’s first SCAR portrait

“The SCAR Project was something very emotional for me. It helped me
embrace my scars and realize that they are something beautiful and they
are forever a part of me. I also see it as something to leave this world after
I’m gone. Something for my family to look at and never forget the fight that
I fought for my life.” 
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In the middle of her hurricane, Jolene still dreamed and talked about the things she wanted to do and the places she wanted to go. Some were as simple as wanting to gather in a garden in Florida with some of her favorite flowers and whip off her fake petals once more while singing Red Neck Woman at a karaoke bar, but Jolene’s stem and leaves were too battered by the storm to make the trek, so a paper flower named Flat Jolene was born to travel the world to the places Jolene dreamed of going, but couldn’t.
She started her journey in Florida and now has gone to places all over the world on adventures that continue to be shared with Jolene’s family, friends, and many fans. She stood in for Jolene on a cold October weekend in 2011 for the opening of The Scar Project Exhibition in New York City.
It was the weekend Jolene died, but Flat Jolene continued living for her. She skated at Rockefeller Center, rode up the elevator in Tiffany’s, went to a Broadway show, and stood somberly at the 9/11 Memorial with the other flowers. Throughout it all, weeping dew knowing that the original blossom, Jolene, had been plucked from the garden and laid to rest.

Although Jolene’s life was short, her garden was enormous and will continue to grow. Her roots remain in the soil surrounding the flowers she has touched and nourished with her love of life. The gifts she left behind are not just the material ones like the beautiful ceramics she painted with joy and love for dear friends in the Petroglyph Ceramic garden. They are the flowers she gathered together who can support one another through more storms or dance together in celebration . . . the ability to appreciate the little things . . . “Oh the joys of Hospice living . . . today is sponge bath day! WOOHOO! count your blessings! yes, even taking a shower is a blessing so be sure to wash behind ur ears people!” . . . the understanding that just because a flower sometimes wilts doesn’t mean it is giving up . . . it is taking a moment of quiet reflection . . . the knowledge that another flower has faced a similar storm . . . the ability to choose how one dies and to gracefully, yet honestly live while dying.
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The greatest gift Jolene may have left behind, though, is a community of flowers who are a loving family for her Mama Bear Denise. From the flowers of childhood and high school that routinely check in on Denise and nourish her soil to the Phyllodes and cancer bouquet that blossom love for her, Denise is always surrounded by a devoted garden. This was reflected most profoundly at the recent Scar Project Kick-Off event for Los Angeles. It was a weeklong adventure that began and ended with a road trip taken by Joules Evans, Flat Jolene, and Mama Bear Denise. The Scar Project sisters and community embraced Denise and shared much dew to water the garden. They gave her an opportunity to be Jolene’s voice and see the impact her beautiful blossom had made when she opened her petals and leaves to the world. They allowed her to become a part of not only the garden Jolene left behind, but the blossom Jolene considered her legacy. She left behind a part of her she knew still needed her Mama Bear Denise to bloom.
If we are wise, we throw back the curtains and open the window when the light beckons us from that darkened corner like Jolene did. We weclome ourselves into the garden first and begin nourishing our lives with the knowledge that the gifts we leave behind are created in the gardens of our living and even in our dying as it is a part of living in the garden of life.

Jolene’s S.C.A.R. Story – Part I

[After Jolene’s Mom, Denise VonMillanich, and Flat Jolene’s special guest appearances at the SCAR Project LA cocktail party kick-off fundraiser last month, quite a few people asked about Jolene’s S.C.A.R. story. Her recent passing in October reminded us all that the absolute reality of cancer is that not everyone survives. It is a horrid, hateful disease that does not care if you are only 17 years old, like Jolene was, when she was first diagnosed with breast cancer. It does not care if you are only twenty-freaking-five when you lay down your pink boxing gloves and go to your rest in peace after kicking cancer’s ass for 9 years, like Jolene did. Cancer does not give a rip if it’s 2 weeks before your 26th birthday and you have plane tickets to NYC to The SCAR Project exhibition, where your portrait is hanging, and your SCAR sisters are all waiting to hang with you, as was the case with Jolene’s passing. Cancer does not care. But we do. And we remember Jolene. We will always remember and love you, beautiful Jolene.]

As a fitting tribute to Jolene, hers was the last portrait taken down after the NYC exhibition. The flowers are from her friends who had travelled there to be with her, and from her SCAR sisters. Rest in peace, sweet Jolene.

This very special guest post was written by Jolene Von Millanich. It is her story, in her own words. Although we know the end of her cancer story and that she is resting in paradise, as her brother puts it, or causing chaos among all the angels, as one of her friends posted on her Facebook wall… Jolene’s story is far from over. Her SCAR portraits, her memory, her mama, all those of us who love her, and Flat Jolene, continue kicking cancer’s ass and taking names, fighting like our girl Jolene.
 
My Neverending Cancer Story

by Jolene Von Millanvich
 

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

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

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

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

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

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

Jolene’s gift for her friend Trish. The picture speaks for itself.

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

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

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

Jolene and her friend Mary after her jaw surgery.

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

[Addendum: Jolene’s chondrosarcoma in her jaw recurred before the end of 2010. About a month later, she was advised the genetic testing for Li Fraumeni (genetic syndrome) was positive and she underwent another grueling 18 hour surgery in April 2011 almost identical to the surgery she had in June of 2010. More of Jolene’s jaw was taken and rebuilt. A couple of months after that jaw surgery, it was determined that Jolene had two chondrosarcoma tumors growing in her sinus cavity/brain. Jolene underwent surgery to debulk those tumors and relieve some of her pain. After that surgery, Jolene (with the support of her family) decided to enter hospice care and live a life of quality over quantity. Jolene spent the last three months of her life making memories with her family and friends.]

And here are a few of those friends remembering Jolene at The SCAR Project Exhibition.

Notes on Cocktail Party Napkins

The SCAR Project LA Exhibition Producer Diana Haye at the kick-off cocktail party fundraiser May 5 at Temple Lofts.

Thank you to everyone who turned out for The SCAR Project LA Cocktail Party Fundraiser kick-off event on May 5. It was a beautiful evening and a fantastic kick-off event toward bringing The SCAR Project to Los Angeles in January. We believe it will be one of the most beautiful meaningful art exhibits to grace the City of Angels.

“I was thrilled with the SPLA kick off party,” said SCAR LA Producer Diana Haye, heading up the committee to bring the exhibition to LA “to honor the 12 women I have lost to breast cancer and ALL women who have been affected. I can think of no better way to honor the women we’ve lost and the women who are on the battlefield with cancer. I have never been so profoundly moved by anything as I have by The SCAR Project.

“We are well on our way to getting the word out in LA, said Haye. “We had a very diverse crowd at the kick-off, all extremely supportive and profoundly touched by The SCAR Project documentary: Baring It All and the SCAR girls who attended the event and shared about their SCAR Project experiences. I would have to say that the event went better than anticipated. No glitches! Fabulous people and fabulous food.”

LA Screening of “Baring It All” SCAR documentary

SCAR girls, Denise, Sky, Joules Evans, SCAR LA Producer Diana Haye, SCAR photographer David Jay, and caterer Michael Curry salute Flat Jolene at the SCAR Project LA cocktail party kick-off.

Special thanks go out to our gracious host Tom Zahlten, caterer Michael Curry for the amazing spread, Lucy Svimonoff for providing sign language interpreting, Style Network’s Taylor Hennessy for gracing us with her presence and introducing the Emmy nominated SCAR Project documentary which she was instrumental in the shaping of for Style Network, the SCAR girls who came and shared their stories, and Jacquie McColgan for being such a ridiculous generous hostess of the SCAR girls (and me) while in town. Also SCAR girl Jolene’s beautiful mama (Denise, pictured above) made a very special guest appearance and said a few words.

A very special moment of the evening as she honored her beautiful Jolene, who recently passed away in October. Jolene was one of the youngest SCAR girls. She was only 17 when she was diagnosed. She was only 25 when she passed away. That is the absolute reality of why we do this. This bitch of a disease must end.

(Rest in peace, beautiful Jolene… although, I rather picture you flying or cloud surfing.)

Besides raising seed a little money for the expenses involved in bringing the international exhibition to LA in January, of which the proceeds will benefit Breast Cancer Angels of Southern California, both shipping costs to LA and catering (skills not food supplies) for the Gala opening were donated. Also, in case you missed this first cocktail party/screening of “Baring It All” a few more were booked at the kick-off event and are coming soon… so stay tuned at The SCAR Project LA group page on Facebook.

In other news and on other cocktail napkins, the cocktail party kick-off for The SCAR Project DC is just a few weeks away. David Jay and some of the SCAR girls will be speaking at the event, with DC news anchor/survivor Kristen Berset as mistress of ceremonies. Guests at the kick-off event will have the first opportunity to purchase tickets for The SCAR Project DC exhibition, before they are released to the general public. There will be SCAR Project books and “Baring It All” dvds for sale.

There are only a few tickets left for The SCAR Project DC cocktail party kick-off on June 20th at The Dunes art gallery in Columbia Heights. For tickets, or more info about the DC exhibition, check out The SCAR Project DC group page on Facebook.

The SCAR Project DC exhibition will kick-off breast cancer awareness month 2012 from our Nation’s Capitol. “Our goal is to make a strong statement by showing our country what breast cancer really is all about,” said The SCAR Project DC producer Donna Guinn Kaufman, who is also a breast cancer survivor, and founder of Kill the Cancer Beast Foundation, the organization spearheading production of The SCAR Project DC exhibition. “We hope to change the way that people look at this disease, and as such get people to take the action that is needed to end it!”

Cheers to that. And here’s to the DC cocktail party kick-off, and the upcoming exhibitions from DC to LA.