THIS is breast cancer awareness, people
Posted: October 24, 2013 Filed under: breast cancer, cancer fatigue | Tags: breast cancer awareness, breast cancer awareness month, breast cancer in young women, David Jay, NFL goes pink, NFL's A Crucial Catch, pinktober, pinkwashing, psychological effects of breast cancer 16 CommentsThis 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.
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.
I gotta come back in the spring and see this wisteria in bloom.
Some of the sculptures surrounding the building.
This gate leads into a little courtyard to the side of the gallery; a serene spot in the middle of the city.
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.
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
“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
“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.
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.
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.
Worst idea ever
Posted: October 15, 2013 Filed under: Uncategorized | Tags: breast cancer awareness month, Lace Up for the Cure, New Balance, pinktober 9 CommentsI saw this ad in the Sunday paper.
Please. No.
Just no.
Pinktober is sucky enough for those of us who are unwillingly on Team Pink. One month is bad enough.
No.
A pretty pink piece of mail
Posted: October 2, 2012 Filed under: breast cancer, cancer fatigue | Tags: breast cancer awareness, breast cancer awareness month, DIEP flap, DIEP reconstruction, feel your boobies, mammograms, pink ribbon madness, pinktober, pinkwashing, save the tatas, sexualizing breast cancer, the Big Dig 14 CommentsBecause it’s October and we’re awash in all things pink, I got this cute little notice in the mail from my health insurance company.
Of course it got my attention, amidst the heaps of junk mail, because it’s pink and because when I see a pink ribbon, my brain immediately goes into fight or flight mode as visions of Komen’s money-grubbing dance in my head.
Ok, that’s a bit harsh; Komen isn’t just about money-grubbing. But Pinktober does that to me. I jump to conclusions and get all snarky.
I sat down to read this pink piece of mail, expecting to roll my eyes at yet another meaningless and offensive bit of “awareness” propaganda. Plus, the headline imploring me to put myself first made me think I had free reign to be totally selfish and say, go get a mani-pedi instead of cooking dinner for my people. I had to read more!
Sucked in by the pink haze and the make-me-be-naughty headline, I read on. Page 2 asked a pressing question:
Why, yes, as a matter of fact, I did know that. I also know that mammograms aren’t all that effective at detecting a lump in one’s breast, as I’d been having a mammo every year and at various levels for 5 years before my lump was detected, and even then, it wasn’t detected by a mammo at all but rather by my uber-vigilant OB-GYN, who I credit with saving my life, or at least saving me from a much more protracted and undoubtedly less pleasant cancer “journey.”
Oh, boy, there goes the snark again.
I love the images used in this: the radiantly healthy, young, smiling patient with her gown perfectly draped around her non-cancer-infested body. The state-of-the art screening equipment. The competent and in-control technician. And last but not least, the perfectly round, plump, healthy breast on the screen.
Sigh.
Now I’ve moved straight from snarky to sad, and I’m only on page 2.
Page 3 gets a little more serious, but I’m still sad. That image of the round, healthy breast stays with me. I like that page 3 imparts a serious note, taking care to provide a few snippets of facts & figures to prod one but not scare the bejeezus out of one. The sympathetic tone of, “We know you haven’t scheduled your mammo and we understand, you’re busy taking care of everyone under the sun” is really effective. It’s also very reassuring the way the text suggests “Hey, if the worst does happen and the mammo we suggested you schedule shows that you do in fact have breast cancer, it’s ok; you’re good. We caught it early so you’ll survive.” (You’ll survive, but your life, your wallet, your mind, and most of all, your body will never be the same.)
It goes on to list the signs & symptoms of breast cancer, just in case you aren’t sure. And another suggestion to schedule that mammo today. I love the line about how it won’t cost anything but time. I guess they decided against full disclosure, and nixed mentioning that the smooshing of those nice round breasts is uncomfortable, and that the hospital smell and presence of nightmare-inducing germs everywhere may make you want to run screaming from the building, it might freak out the intended audience and one might decide to chuck the pretty pink pamphlet onto the recycle pile without a backward glance.
I did a double-take at the statistic at the bottom of the page: Did I know that BC claims last year totaled $4.3 million? No, I didn’t know that. That’s a lot of cake.
At first blush, I thought: what kind of nutter is running the accounting office, if they don’t know that I’m one of those claimants? How can they overlook the fact that I’m likely responsible for a quarter of their 2011 claims costs? I’d think that my name is at the top of the list, perhaps with a yellow highlight or maybe an alarm bell that rings, or who knows, a nuclear-reactor type meltdown when my name and ID number are associated with yet another costly claim for United Health Care and Baker Hughes. It’s been a while since I’ve kept an eye on the amount of my claims, but it’s safe to say that it’s up there. Not crazy expensive, like the dresses Ann Romney continues to wear for public appearances, seemingly clueless to the fact that this thing called the Internet exists and it’s easy to check on which designer created her frock and how much it cost, all while she and Mitten claim to be regular folks who don’t consider themselves filthy rich.
Oh good grief, the snark is back. Let me go back and look at that sweet image of the round, healthy, never-to-be-seen-again-on-my-body breast.
Ok, all better.
Thankfully, before I could call the health care PR folks and cuss them out for sending me–me, of all people–a mailing asking if I knew how much my claims had cost them, the Hubs saved me from embarrassing myself and owing a hard-working corporate soul an apology. Just as I was getting really worked up about how in blue blazes could they NOT KNOW that I’ve made hundreds of thousands of dollars in claims because of breast cancer, the Hubs reminded me that we didn’t have United Health Care during the shitstorm of mastectomy, infection, hospitalization, endless labwork, multiple stabs at diagnosing that damned infection, surgery, surgery, surgery, hospitalization, not one but two infectious-disease teams, at-home IV antibiotics, debridement, debridement, home health care, more debridement, more at-home antibiotics, wound vac, the Big Dig aka DIEP reconstruction, ICU hospitalization, more antibiotics, 2 revisions to said reconstruction, and at least 100 visits to the plastic surgeon, yadda yadda yadda.
My bad.
United Health Care got me once the bulk of my spending frenzy was done. No wonder they send me such nice, pretty mail. Whew, I am SO glad I didn’t get on the horn and issue a blistering diatribe to the first person to answer the 800 number. That would have been soooo embarrassing.
The pinky mail wraps up with one final statistic:
I guess I should be moved by the fact that United Health Care is looking out for the many women who are eligible for a smash-&-snap but who didn’t schedule one last year. And I am. Yes, I know that it’s in UHC’s best interest to have their insured women get their mammos, because screening is cheaper than mastectomies and chemo and radiation. I do like the gentle statistics employed in this publication–nothing too in-my-face, not all gloom & doom, no hint of “do this now or burn in BC hell.” I appreciate the assumption that I’m a grown woman who can decide for myself; personally I’m not one who needs to be told twice when it comes to doing something necessary but unpleasant, but I can forgive the repeated pleas to schedule that mamno now, because not everyone shares my “get ‘er done” mentality, and most women have less flexibility in their schedules than I.
This piece of mail struck the right balance of “you need to do this even thought it might uncover your biggest fear and thrust you headlong into a medical nightmare” and “that said, we’re here and are gonna take care of you.” I give high marks to the copywriters who straddled the idea of scaring us enough to schedule that mammo but not keeping us awake at night wondering what it will be like.
Before I was diagnosed, I didn’t give much thought to breast cancer. Sure, I saw the pink ribbons everywhere and thought the women whose bald heads were under cover of a pink bandana are mighty brave (I still do think that, BTW). Even when I got picked for the melanoma lottery, and even when my sweet mama died a not-so-pleasant death from a reproductive cancer at the still-too-young age of 67, I didn’t think much about breast cancer. I still didn’t think much about it when my awesome OB-GYN learned of my sweet mama’s death and said let’s go ahead and get you started with a baseline mammogram, even though you’re nearly 5 years away from the recommended screening age. Every year my mammo came back funny (not funny ha-ha but funny peculiar, because there’s not a damn thing funny about a funny mammo). I still didn’t think about breast cancer. The radiologists chalked it up to dense breast tissue and said, let’s see what’s going on next year. Then the next year, the images still looked funny, and maybe even a bit more unusual, so I saw a breast specialist and endured a series of biopsies. And still, I didn’t think about breast cancer. That breast specialist said the biopsies didn’t show anything overtly cancerous, and I was young for the cancer beast to come calling, so let’s just keep an eye on it and continue the annual screenings. Even then, I didn’t think much about breast cancer.
Fast forward to the present day, as I sit with a well-done mailing imploring me to schedule a mammogram.
Now I feel the need to call United Health Care, not to cuss anyone out, but to tell them thanks for the pretty pink mailing, but to kindly remove me from the distribution list for future mailings. See, I won’t be scheduling a mammogram this year, or any year in the future. Instead, I go see the unflappably darling Dr Dempsey twice a year for a chest and lymph node ultrasound. It’s not a breast ultrasound, because my breasts contain no breast tissue. Nope, they are made of 100 percent belly tissue, and breast tissue and belly tissue look totally different in a mammo. As far as I know, there’s not a smash-and-snap procedure for the belly. In addition to my twice-yearly screening by my favorite breast surgeon, I get to see my cutie-pie oncologist three times a year. Blood work checks my tumor markers and hormone levels, and I submit to a thorough exam and lecture about my champagne habit.
Maybe I will call United Health Care, to tell them that I appreciate them putting out such a fine piece of mail. The best part about the mail? Not once is there an image like this
And for that, I’m grateful.
The reality of BC
Posted: October 11, 2011 Filed under: breast cancer | Tags: breast cancer awareness month, breast cancer awareness products, David Jay, Deborah Lattimore, pinktober, pinkwashing, psychological effects of breast cancer, SCAR Project, the Pink Birdie, young women with breast cancer 9 CommentsNo, 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:
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.
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:
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.
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?
The best photo
Posted: October 2, 2011 Filed under: Uncategorized | Tags: breast cancer awareness month, cancer patients, Houston Chronicle, Houston Race for the Cure, postaday2011, psychological effects of breast cancer 2 CommentsI posted tons of photos in yesterday’s post from the Race for the Cure. Many of them were touching, some were funny, a bunch of them were moving, and a few were even tear-inducing. My head is still full of the sights & sounds of the event, and frankly I didn’t expect it to affect me as deeply as it did. I’m still processing the swirling emotions involved in participating in the race as a survivor. Maybe I will sort these feelings out, and maybe I won’t.
One photo I did not post, however, demands to be seen. It was in the Houston paper this morning, and my race buddy texted it to me before I saw it myself. I’ve been thinking about it all day — through 5 sets of tennis & beers at the club, during my shower, while I started laundry, and as I absent-mindedly helped Macy with her career day project for school, then some more as I scrolled through the Chronicle’s online photo gallery of yesterday’s race.
So without further ado, here it is — the best photo from the 2011 Houston Race for the Cure. Photographer Mayra Beltran outdid herself with this shot.