The SCAR Project
Posted: May 19, 2011 | Author: pinkunderbelly | Filed under: breast cancer, cancer fatigue, infection, Surgery | Tags: "just write", Barbara Delinsky, breast cancer, cancer battle, cancer diagnosis, David Jay photographer, infectious disease, Nancy K Brinker, new boobs, pink ribbons, plastic surgery, post-mastectomy, Promise Me book, Race for the Cure, reconstruction, recovery, survivor, Susan G Komen, The SCAR Project, Uplift, Wordpress, young cancer patients | 20 CommentsListen up, people: this is really important.
If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.
The project’s acronym stands for “Surviving Cancer. Absolute Reality.”
I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”
And how.
I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.
I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic. I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis. The SCAR Project is following suit.
As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.
One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”
We’ve come a long way.
But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.
The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.
When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.
Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it. Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.
Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:
“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”
Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.
I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.
Uplift
Posted: March 7, 2011 | Author: pinkunderbelly | Filed under: breast cancer, kids, literature | Tags: Barbara Delinsky, books, breast cancer, cancer battle, cancer diagnosis, survivor, Uplift | 7 CommentsI received a wonderful book from a total stranger after my mastectomy called Uplift by Barbara Delinsky. Wow, how many different ideas can one girl cram into a single sentence? There’s 7 right there.
The book is a compilation of survivor stories from members of the pink ribbon club around the country. Delinksy, a BC survivor herself, wrote the book she wished she’d had while dealing with her mom’s death from BC and her own BC battle.
Her mom was diagnosed with BC in the late 1940s, when a diagnosis was the same as a death sentence. Barbara was 6 years old when her mom was diagnosed, and 8 when her mom died of this wretched disease. I was 36 when my mom died, and it was by far the worst thing that’s ever happened, the hardest thing I’ve ever endured. Fighting cancer is a piece of cake compared to missing my mom. That said, I can’t even imagine how devastating that loss would be to a young child. While I miss my mom every day and get royally ticked at the fact that she and my kids are both missing out on each other’s company, I’m grateful to have had her for 36 years instead of just 8.
The BC battle has changed significantly since Delinksy’s mother was diagnosed and perished. She says that although she was 8 when her mom died, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.
One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”
We’ve come a long way.
I for one know with absolute certainty that this “cancer journey” would be hell without the support of friends & neighbors. I said it all summer and I’ll say it again: It truly does take a village, and I’ve got the best village around.
The 5th anniversary edition of Uplift, which is the one I received, features a foreward by Delinsky and some follow-up information on some of the survivors whose stories were featured in previous editions of the book.
Uplift is said to contain all the helpful advice that only the women who have already been there can give, and it’s true. The book is divided into chapters according to category, like radiation, so it’s easy to pick & choose, read a little on exactly what you’re looking for and skip what doesn’t apply to you. I especially liked that last part. I’m always in a hurry and have a lot to do every day, so I don’t want to waste time flipping through a book to find the information I’m looking for. I didn’t need to read the chapter on dealing with cancer and the workplace, for instance. My workplace is in my home, and there was no “boss” to tell the terrible news when I was diagnosed, because that boss is me. There were no co-workers to talk to and sucker into taking over my job while I was out on medical leave because, well, I run a one-woman shop here. No co-workers. And no suckering either because I have the kinds of friends who just show up to take over my “job.” These kick-ass friends stepped in and vacuumed my house, walked my dogs, brought food (delicious food), hauled my kids to school & activities, folded my laundry, dropped off & picked up prescriptions, and drove me to & from the doctor’s office. Sometimes margaritas and champagne were involved, but that was purely medicinal, of course.
Uplift shows the world how real women who’ve been diagnosed with breast cancer have faced their fears, survived their illness, and bravely gotten on with life and love, career and family. And because she’s filthy rich from all her best-sellers, she’s able to donate all of the proceeds of this wonderful book to BC research. So if you know a woman who’s been diagnosed, go buy her this book. If she already has it, buy it anyway for her to give to her doctor, to put in the waiting room.
I received my copy in the mail from one of Trevor’s dad’s colleagues, a woman I’ve never met but who was kind enough to think of me and pass along this super-useful book. I’ve since bought it for my friend who’s going through the “cancer journey” and passed the link on to a new friend, Paul, whose wife has just been diagnosed.
Paul writes a blog about Bonnie’s “cancer journey” and has mentioned Uplift in his blog a couple of times. He recently posted this about Delinsky. Seems he emailed her to tell her how much he and Bonnie are enjoying the book, and he was tickled when she emailed him back with a very nice note. Go read his blog; it’s good. Plenty of BC blogs written by the women in the trenches (me! me!), but I haven’t seen any written by the men who walk that “journey” alongside these women. I love that Paul writes so openly and eloquently about Bonnie’s “journey” while still seeming so calm and steady. No rants from his blog; ya gotta come back here for that. He pens some original poetry (short and topical), and writes often about wine. Two of my favorite subjects, poetry and wine.
Delinsky must be pretty busy with her correspondence, because she responded to me, too. In the back of the book, she asks for survivor stories, and once I was able to haul my carcass to the computer after all the mess I was involved in this summer, I emailed her a few tidbits from my “cancer journey.” Then I promptly forgot all about it.
Imagine my surprise when I got this in the mail shortly after submitting my little stories:
A signed letter from Barbara Delinsky herself. Wow!
How cool is that?
I don’t remember exactly what I wrote to her, since I was probably in a vicodin-induced fog at that point, so I scrounged around on the ol’ hard drive to see if I could find the original document. I found it, but rather than bore y’all with it right now, I’m going to save it for the next edition of Uplift. When my name and story appears in print, I’ll let ya know.
Ok, that’s kind of mean, and I for one hate surprises and having to wait to get to the good stuff, so I’ll give you a sneak peek. Some of you may remember this story from my Caring Bridge page. I guarantee it will make you laugh. If it doesn’t, there is something seriously wrong with you.
For the “What was…what did…what is…?” category for which Delinsky solicited stories, I offered this:
The funniest thing that happened to me during all this was a conversation with my 8-year-old daughter, Macy, 2 weeks after my bilateral mastectomy. We were walking to my son’s baseball game and, while she knew I’d had surgery for breast cancer, I don’t think she ever connected breast cancer and mastectomy with losing my breasts. As we were walking she asked if something happened to my chi-chi’s. I said, “Yes, they cut them off. That’s what the surgery was for.” She said, “Well, are they going to fix them? Because they’re not looking so good!” I laughed about that for a week.
That was at the end of May, and I’m still laughing about it.