THIS is breast cancer awareness, people

This. the-scar-project

Not this. nfl-watch-nike-breast-cancer-awareness-week

This. emily

This is breast cancer awareness.

The SCAR Project is in town. My town. I went yesterday. What an experience.

I was dilly-dallying around about going and trying to convince myself that I am too busy to take time out of my jam-packed schedule. Truth is, I was a little nervous about going. I was nervous about  seeing the incredibly powerful images and then confronting the emotions they would inevitable bring to the surface. I’m 3 1/2 years out from my diagnosis, yet I know that at any given moment, cancer can upend my “new normal” and bring me to my knees.

I suspected that seeing The SCAR Project images, full-size and in person, would upend me and bring me to my knees. They did.

I’ve seen the images online and in my copy of The SCAR Project book, one of my most-treasured gifts (thank you, Trevor). The book is available on Amazon.com; click here to order your copy.

Seeing them in person, however, is a completely different experience.

The exhibit is housed in a small gallery in the heart of Houston. On my short walk to the gallery I passed this lovely shrine in someone’s front yard.20131023-155312.jpg

I certainly hope I didn’t offend by snapping a quick photo. I don’t see things like this in the ‘burbs where I live.

Nestled into a quaint neighborhood surrounded by bustling businesses, Gremillion & Co Fine Art, Inc., is spartanly understated. The lush greenery surrounding the modern-but-not-out-there building and the pieces of sculpture flanking the gallery speak to the idea of popping inside for a quick fill of art in the middle of the day. 20131023-155031.jpg

I gotta come back in the spring and see this wisteria in bloom.

20131023-155200.jpgSome of the sculptures surrounding the building.

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This gate leads into a little courtyard to the side of the gallery; a serene spot in the middle of the city. 20131023-155130.jpg

Enough stalling. Time to go inside.

There’s a sign on the gallery door that requests that visitors keep their conversations to a minimum and in a whisper because of the gripping, emotional response people have had to the photographs. While some not so intimately acquainted with the beast that is breast cancer might find this intriguing and perhaps even titillating, it did not have that effect on me. I felt certain my initial misgivings about witnessing the photos were true.

A small table filled with programs and copies of The SCAR Project book stands in the entrance. A cut-out window just behind revealed a man eating lunch, and I realized that man was David Jay, founder and photographer of The SCAR Project. I asked the docent if that was indeed him, and she nodded. I told her that I’m a survivor who greatly admires his work. She said, I thought you might be a survivor.

How did she know? What caused her to suspect? Perhaps the majority of visitors to the exhibit are. Or perhaps she read the fear and trepidation in my eyes. Either way, she smiled sympathetically and stepped away. Next thing I know, David Jay is standing right beside me, saying hello. Wow. I told him how much I admire his work and how grateful I am for him telling the real story. Not the “prettied-up, pink ribbon” story. He nodded and said, “That’s why the subtitle of this project is ‘Breast Cancer Is Not a Pink Ribbon.'” Amen, brother.

In the exhibit program, Jay is quoted as saying, “Still, through all of this, there is beauty. Soul. Courage. These are the things which cannot be taken away.”

Jay told me that he never envisioned working on this project, but that after a friend was diagnosed, the project was born. His mission: to show what breast cancer really looks like, especially in young women; to fundraise for research; and most importantly, to empower the women who have been affected and to hopefully allow them to see the beauty, strength, and resilience in the aftermath.

“For as long as I can remember, I have struggled with body-image issues. Losing my breasts and developing thick, red scars across my chest only made matters worse. I could not bear to look at myself in the mirror. I hope that being a part of The SCAR Project will help me to see something beautiful for a change. Maybe it will help me appreciate my body….It has, after all, created and sustained two new lives; it has fought cancer and won. It’s time I started giving it, and myself, much deserved respect.  Maybe if my scars were viewed as art, it would help me to heal.” — Gabrielle, age 30

“The most important part of being photographed was that it made me feel beautiful. It was an opportunity for me to stand tall and strong with my scars and redefine my beauty for myself.” — Emily, age 32

“My challenge has been and continues to be to accept the sorrow, focus on the joy, and remember to share both with the ones I love. Survival is about more than breasts: it is about courage, strength, and the many other attributes that make a woman beautiful.” — Jill F, age 28

Barbie, age 36, served 18 years in the U.S. military before being diagnosed with breast cancer. 1376917173_SCAR-12

In her SCAR Project bio, she says that “a weapon, a FLAK jacket, and a Kevlar helmet didn’t protect from THIS enemy.” She goes on to say that “I am not going to ever get over breast cancer or move past it. I will love with it for the rest of my life. Remission is not a cure.”

Not surprisingly, scars are a recurrent theme among the women featured. “My scars are powerful lines that point to hope, faith, and love.” — Candice, age 30

“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 of living.” — Eliza, age 22

Some of the quotes by the women featured are so sad, yet so true:

“Cancer does not discriminate; it doesn’t care who you are.” — Jessica D, age 22

1376917209_SCAR-16“An East-Indian girl, I was a mother to a toddler who fed from cancerous breasts for 20 months. A wife to a husband who left because he feared what my cancer would do to his life. A sister to a man who didn’t know what to say, so said nothing.” — Sona, age 36

20131023-155412.jpg“Cancer took so many things from me, but the one thing I may never get over losing is my sense of security. Blood work and tumor markers allow me to live my life in 18-month intervals, but cancer is an unpredictable beast.” — Toni, age 28

“I lost all of my hair, looked like ET, got my boob hacked off along with 9 lymph nodes, got zapped by so much radiation my skin burned and bled, and will need to cut open my stomach and relocate my fat and muscles to my chest. I think sometimes I am so good at putting on a pretty face and acting all put-together that people don’t realize the extent of everything that breast cancer survivors go through. My scars and words are only half the story. They don’t show the emotional and private struggles that are continuously present.” — Vanessa, age 25

Something else Vanessa said really resonated with me: “I’ve never wanted to be the center of attention, or to be regarded as ‘special’ or ‘brave.’ I don’t need to be pitied or felt sorry for. In life, there’s a beautiful balance of happiness and sadness, awareness and unawareness, acceptance and rejection, blessings and misfortunes. These dualities are the moments that define life.”

Not all of The SCAR Project women survived. David Jay tells the story of Jennifer, age 27, who could not travel to New York for her photo shoot because her cancer had spread to her liver. She wanted to do it, though, and asked Jay if his studio had wheelchair access because she could no longer walk up the stairs. Jay told her, “Just come, I’ll carry you up the stairs if I have to.” She never made it to New York.

Each of the women featured in The SCAR Project has an important story to tell. Each has experienced things that profoundly and permanently changed them. Each faced the terrifying reality of cancer at a young age.

This wall of images represents each woman’s story and each woman’s struggles. It is moving beyond words.  Not just for those of us diagnosed with the disease, but for all of us as human beings.20131023-155333.jpg

As I left the exhibit, I saw David Jay outside, on his cell phone. I waved to him as I walked past to my car. Pulling out of the garage, I thought, I should ask him to sign my program. But I didn’t want to interrupt his phone call. What to do? What to do? Interrupt him. Ask him.

So I did. 20131024-122627.jpg

For more information, go to http://www.thescarproject.org. Follow The SCAR Project on Facebook and Twitter (@thescarproject). Watch the Emmy-winning documentary Baring It All and purchase The SCAR Project book.


Giuliana Rancic

I wasn’t planning on writing about Giuliana Rancic’s breast cancer diagnosis in October or her decision to have a double lumpectomy or her announcement  that her double lumpectomy has morphed into a double mastectomy. Much has been written about it, and she’s done the talk-show circuit, and I didn’t feel the need to comment on the latest celeb to begin a cancer “journey.” However, the more I read about her story, the more compelled I am to comment.

First, when her cover issue of People magazine hit the newsstands, it nearly caused me to have a heart attack. I was mindlessly unloading my loot from my shopping cart and putting it on the conveyor belt when I caught a glimpse of this:

I didn’t notice the photo or her name, but was drawn in by the bold yellow headline and wondered, who’s that and what’s she got that is serious enough that she has to fight for her life??? Imagine my shock when I read the fine print and realized that it’s Giuliana Rancic and she’s got what I had — breast cancer. After the shock wore off, I thought I’d better see how serious her diagnosis is; after all, if she’s fighting for her life, it must be bad. I’m thinking stage 4 with mets everywhere.

The article in People, titled “The Fight of My Life,” speaks of her “devastating cancer diagnosis.” I’m thinking this is really bad.

As I read on, though, I learned that her BC was caught early and had not spread.

Whew!

So does this mean that early-stage, non-metastatic BC qualifies one to be deemed “fighting for one’s life”? If that’s the case, what does that mean for women whose BC is not early stage and has spread?

This kind of overwrought journalism really bugs me. I know that People has to sell mags, but good grief, how about a little truth in advertising? The cover story of  “I’M FIGHTING FOR MY LIFE” in big, bold letters nearly caused me to stroke out, and left me thinking I really underplayed my BC story. My cancer was in both breasts, not just one, and I never declared that I was fighting for my life. I’m thinking I seriously mishandled this.

I’m certainly not one to kick a sister when she’s down. That’s not my intent at all. I wish her the best; I truly do. Cancer is a terrible thing, no matter what age or what stage one is when diagnosed, and I certainly don’t mean to give Rancic grief — she’s enduring enough of that as is. However, I do wonder about some of the comments she’s made. I was hoping they were taken out of context, but ….

She said that the double lumpectomy didn’t get all the cancer so she was moving forward with a bilateral mastectomy, and I totally support her saying that deciding to have a mastectomy “was not an easy decision but it was the best decision for me.” Agreed. But when she went on to say  “Not only can it [mastectomy] save your life, but you can come out feeling healthier and with a positive self-image”

Really?

Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.

Come on, show of hands.

Anyone? Anyone?

Maybe I’m the odd girl out, but the process of lopping off my breasts certainly didn’t make me feel that way, and 18 months later, it still hasn’t. I’ve talked to more than a few BC gals, and never once has the topic of feeling healthier or having a better self-image come up. Not once.

On The Wendy Williams Show the other day, Rancic spoke openly about her surgery and how she thinks it will affect her: “Listen, I love my girls, but I’m gonna feel more like a woman when this is all done.”

“I’ll be able to say that I survived something major and it’s made me stronger. I will be a better woman for it.”

 Oh boy. More like a woman and a better woman. Yikes.

I hope she’s not setting herself up for a very big, very traumatic fall.

Rancic went on to say that “scars are beautiful. I think scars tell a story.”

Yep, there’s a story there all right. Millions of women can attest to that. There is most definitely a story there. Hopefully not a horror story.

I wonder if she’s seen any images from The SCAR Project. I was blown away by photographer David Jay’s shots the first time I saw them, and receiving The SCAR Project book is one of the best gifts ever (thank you, Trevor). The women are beautiful, and their strength and kick-assed-ness is beautiful.  The scars, not so much.

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Giuliana Rancic speculated of her breasts after reconstruction: “They might come out looking even hotter. You gotta have fun with this. We find the humor in everything. Bill helped pick ’em out. I’m like, ‘Bill, that big? Really?'”

They might come out looking even hotter.

I’m gonna have to linger on that idea for a minute.

And when I’m done, I will contemplate the damage that occurs when people say things that imply that facing breast cancer is a tidy event that requires surgery and treatment then fast-forward on to the happily ever after. While the happily ever after certainly can, and does, happen, I think it’s misleading to say that BC is something you deal with and move on. The idea that after cancer comes transcendence is flawed. The idea that all you have to do is wrap a big pink ribbon around a cancer battle is flawed. The idea that everyone comes away from breast cancer a better, stronger person is flawed. It’s not that easy, it’s certainly not pretty, and it doesn’t always result in the kind of change you would consider positive.

In speaking of Rancic’s mastectomy, her husband Bill said, “Our goal is to be done with this by Christmastime and not look back. We’re taking the rear view mirror off the car and we’re not looking back, because we’re going to be done.” Well, considering she had the surgery two days ago, and is still in the hospital, I hope she’s “done” by Christmastime. It’s good to have goals.

Maybe the whole cancer thing is still too fresh for me, too raw, but the idea of not looking back is weird and foreign and borderline incomprehensible. Maybe there’s a pair of magic “don’t look back” glasses that gets passed out upon diagnosis, and I missed out on that. I can see how that might happen as I’m always in a hurry and might have scooted out of Dr D’s office before anyone had a chance to give me the “don’t look back” glasses. Or perhaps I was supposed to get them from my oncologist, but was so freaked out by the fact that I have an oncologist that I ran out of his office before I got the magic glasses. Maybe Giuliana got her glasses in advance; one of the perks of being a celeb and having cancer. Personally, I don’t know how one can experience a cancer “journey” and not look back. I hope it works out for her.

Giuliana is definitely on the fast-track. She says, “I hope for a full recovery by New Year’s Eve. We’re planning to be in Times Square!”

If any of y’all are going to be in Times Square for New Year’s Eve, look out for Giuliana. And be sure you don’t bump into her. Those mastectomy scars and JP drain holes take a while to heal.


The reality of BC

No, I’m not talking about BC the comic strip; I wouldn’t waste my blogspace on that. I’m talking about the reality of breast cancer. The everyday effects of living with — and past — this damned disease. Case in point: I was dashing through the grocery store yesterday to grab a carton of milk (organic of course, because of all the hormones they inject into the poor cows to increase their production, and hormones scare me; and in a paper carton instead of a plastic jug because plastics now scare me, too. Thanks a lot, cancer, for turning me into a paranoid freak who can barely get through the grocery store. Oh, and the receipt now scares me, too, because the chemicals on that innocent-looking slip of paper can act like estrogen, which fueled my cancer. Then there’s the money to pay for the groceries: how dirty and/or chemical-laced is it???). It’s a wonder I can get out of the house.

Anyhoo, before the paranoia set in, I was assaulted by the plethora of pink products. They’re everywhere. Yes, I know it’s October, which means Breast Cancer Awareness Month. I should expect this, right? As I cut through the canned-goods to get to the milk, I see this:

Ah, yes. Pink-label soup. Fantastic. All that sodium doesn’t contribute to lymphedema, does it??

Right next to my organic, paper-enshrouded milk is of course the pink-a-palooza yogurt display.

Take a half step to the right and there’s the pink-ribbon-edition Milano cookies, to go with the milk.

In case you spill your milk, never fear: Brawny is in on the pinkwashing, too. 

So is Viva. You’ve got a choice. There’s pink-bedecked TP, too, in case the dairy upsets your tummy. Or in case you’re in the midst of long-term antibiotic therapy for a post-mastectomy infection and feel like your gut has been attacked by a roto-tiller. Nausea and diarrhea from chemo? No problem. Quilted Northern has got your back (side).

If the paper towels can’t contain your spill, never fear: pink Swiffer is here. I know I feel better with a pink Swiffer in my house. If only I could have Swiffered the cancer right out of my chest. Or spiff up the scars left from the multiple surgeries required by said cancer.

And in case you didn’t get enough calories from the milk & cookies, there’s always chocolate:

Pick your poison. Literally.

I guess the candy makers don’t know (or don’t care) that the majority of women fighting breast cancer gain weight — I know, how whacked is that??

Need some pampering? How about some pretty pink nail polish? No harmful chemicals in that. OPI’s “Pink of Hearts” is pretty as a picture, and goes right along with the soft, feminine image we breast cancer girls want to project. 

Or, if you’re feeling feisty, try the OPI “Pink Shatter” limited-edition polish.

We’re gonna shatter cancer, one toenail at a time. But wait — don’t put that polish on your fingernails if you’re going in for yet another surgery from breast cancer. The anesthesiologist needs to monitor your nailbeds, and the pulse oximeter may go wonky.

Being surrounded by pink products everywhere is making me claustrophobic. While I’m glad that corporations donate money to “the cause,” I would like to get through the grocery store without being bombarded with reminders of  this dreaded disease. Just in case I wasn’t thinking of cancer at that very moment, BAM! there’s the shelf full of pink-ribbon dog food to remind me. On the off-chance that I was freed from the worry and strife of my cancer “journey” for two seconds, WHACK! there’s the special-edition Morton’s iodized salt to reignite my struggle. Maybe I was consumed with thoughts of the grocery list instead of wondering if the asymmetry of my newly constructed breasts was obvious to a random passerby. Too bad, because KABOOM! there’s the pink-ribbon Downy fabric softener to bring me back to the reality that is living with the messy aftereffects of breast cancer.

All this pinkwashing has jangled my nerves. Maybe I can relax with a glass of cheap wine or a malt beverage. 

They’re for the cure, right?

Forget the yogurt and the cleaning products. Where’s the pink-ribbon-wrapped bottle of xanax, to quell the anxieties associated with fighting a deadly disease? Where’s the pink iTunes gift card to buy some relaxing music when the fear of recurrence grips us?

What we really need to see for “breast cancer awareness” is this: My flat chest after a bilateral mastectomy at the ripe old age of 41.

What we really need to see for “breast cancer awareness” is the array of home-health-care products required by a post-mastectomy infection and the confusion and fear their presences brings into an otherwise peaceful household.

What we really need to see for “breast cancer awareness” is a post-mastectomy infection site, finally finally finally healing after 3 surgeries to excise dead tissue. 

What we really need to see for “breast cancer awareness” is a young woman strapped to a wound vac, to suck out all the toxins and poisons created by a cluster of bad luck in the OR.

What we really need to see for “breast cancer awareness” are photos of brave women who’ve undergone mastectomies yet still pose for portraits, like in the SCAR project.

photo by David Jay

What we really need to see for “breast cancer awareness” are blogs from women like Deborah Lattimore who write honestly and openly about breast cancer, and are brave enough to post pictures like this:

photo by deborah lattimore

What we really need to see for “breast cancer awareness” are women like my blogfriend at The Pink Birdie, who has no use for a prosthesis but bravely faces the world in her post-surgery state. Her post “Awareness on the Move” says it all. Read it, then you’ll know why we rant about pinkwashing, why the bevy of pink-ribbon-bedazzled consumer products upsets us.

What we really need to see for “breast cancer awareness” are instances of women living their lives post-surgery, post-cancer.

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What we really need to see for “breast cancer awareness” are images of women taking cancer by the balls and saying “Not me, not now.”

 

There. Now don’t you feel  more aware?