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.
Seeing them in person, however, is a completely different experience.
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.
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
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.
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.
Day 7 of the WEGO Health Activists Writer’s Month Challenge (HAWMC). Has it really only been one week? Dang, this is harder than I expected. Today’s challenge is much easier than yesterday’s was, though: What’s the most ridiculous thing you’ve heard about health or your condition?
There have been many ridiculous things said and written and passed along about my “condition.” Thanks to Komen, breast cancer is commonly thought of as the “good” cancer, the “pretty” cancer. You know, the one wrapped in a girlie pink ribbon and represented by rosy-cheeked, full-breasted warrior-women crossing the finish line of the race that’s allegedly going to “cure” my “condition.” (In fairness, it’s also thanks to Komen that my “condition” is one I can blog about without shame or fear or offending someone by using the word “breast.” Betty Ford gets credit for that, too. I can like Komen for de-stigmatizing my “condition” but still shake my head at its idiot pinkwashing.)
One of my all-time favorite ridiculous things said about my conditions is “Well, it sucks about the cancer, but at least you get new boobs.”
I didn’t need new boobs. I was just fine with the set I had. The new ones? Notsomuch. Perhaps this ridiculous statement applies to women who fall into the average age of those diagnosed with breast cancer — mid-60s. If I were 20 years older, I may well think, Hmmm, these old girls have served me well, but it wouldn’t hurt to have a little renovation. But I’m not 20 years older, and I don’t think that. What I do think, though is this: I sure miss my old boobs. And this: Is it wrong for me to envy my pink-ribbon sisters who had the “easy” path of mastectomy to tissue expanders to implants, rather than the not-so-easy path of mastectomy to tissue expanders to several fills of said expanders to infection under the right expander to draining both expanders to removing both expanders to hospitalization for 28 days in one summer to multiple surgeries to extract dead tissue to wound specialists and a wound vac to daily home-health nurse visits to clean and dress that wound to an IV pole in my very own home for round-the-clock IV antibiotics to a year’s worth of oral antibiotics to a hellish reconstruction to two (so far) revisions to try to make that hellish reconstruction’s results palatable. Is that wrong?
Another ridiculous thing said about my condition: “Well, you look good.”
Too bad the general public doesn’t have x-ray vision. Not the kind that lets creepy guys peep under women’s clothing (although I do like the idea of a creepy guy having his retinas burned by peeping under my shirt!), but the kind that lets people see what a breast cancer patient looks like on the inside. Not so good. During the hey-dey of the worst of my BC “journey,” I may have slapped on some lip gloss and clawed through my closet for a top that would accommodate the many stages of my chest expansion. I may have smiled and said “I’m good” when asked how I’m doing in the midst of my own personal apocalypse. Maybe I looked good on the outside — a little sun on my cheeks is easy to achieve pretty much year-round in the great state of Texas. Maybe I portrayed a person who was faring well despite having both breasts removed — people do tend to see what they want to see, and I’m the queen of refusing to fly my vulnerability flag. Perhaps people just don’t know what to say. Either way, we cancerchicks may look good on the outside, but we feel like crap on the inside.
But the all-time most ridiculous thing ever said (to me) about my “condition” is this. Here’s the truth: if something as simple as eating a particular fruit or swallowing a particular supplement could cure cancer, it would. Period. End of story. Oncologists around the world would be out of work, infusion rooms and radiation centers would be rented out as party sites, and Big Pharma would go bankrupt.
If you’re tempted to share the latest internet craze for curing cancer with someone who’s actually dealing with cancer, let me quote Sweet Brown, my favorite meme:
A woman I know from the gym told me that when she saw that the NFL has gone pink for Breast Cancer “Awareness” Month, she thought of me. I smiled politely and said thanks; she’s about the age my mom would have been had she lived, so I want to be respectful. I’m never quite sure how to handle this. On one hand, I don’t want to be the poster girl for breast cancer. On the other hand, I don’t want to seem ungrateful for an acquaintance’s goodwill and kind thoughts. I always limp along in such encounters, then I flee the scene wondering if I reacted in an acceptable way. But, like so much associated with the cancer “journey,” there’s no road map, no guidebook, no real clue on how to handle this stuff.
At first blush, the NFL going pink to support breast cancer seems like a pretty cool thing. I wrote about it last year, and my first impression was how cute! NFL players in pink cleats, gloves, chin guards, skull caps, and sweatbands was so cute! I took it at face value, not being much of a football fan, and I wasn’t bothered by the coaches’ pink ribbons or pink caps, nor by the refs’ pink whistles or the pink tees on the field. However, another year wiser about the pinkwashing phenomenon and another year exhausted by the “awareness” campaign, I’m thinking it’s not so cute. Some of the players have personal ties to breast cancer, having lost a loved one to or had someone they love affected by the dreaded disease. I give them a pass. Guys like Ravens’ wide receiver Jacoby Jones, who has two aunts who have survived breast cancer. He says that wearing pink shoes and pink gloves “means something. For my aunts to fight through that and beat it, that’s some strong women. So I’ll wear it for them.” Another wide receiver, Kyle Williams of the 49ers, will put on the pink for game days in honor of his grandmother, who died from breast cancer in 2005.
If it were just about the National Football League’s largesse and compassion toward a disease that kills nearly 40,000 women in this country every year, I’d say, that’s cool. If it were about players showing their love and admiration for friends and family members who’ve battled breast cancer, I’d be behind them. Even if it were about the NFL designating breast cancer as the charity du jour and earmarking some of the $9.5 million dollars earned in revenue last year, I’m good with that.
However, it’s never that simple, and because breast cancer is the “sexy” cancer, the “glamour” disease, there’s something inherently rotten in the pink plethora splattered all over pro football stadiums across the country. Because breast cancer involves well, yeah, breasts, it easily grabs everyone’s attention, and like so many other things that have been pinkwashed in the name of “awareness,” it means a breast cancer patient or survivor can’t even watch a football game without being smacked in the face, yet again, with the reminder of this damned disease.
In trying to nail down exactly what it is about the pinkwashing of the NFL that bugs me, I came up with this. First and foremost is the emphasis on breast cancer “awareness.” Perhaps the Vikings cheerleader pictured below wants and/or needs everyone to be “aware” of her breasts (BTW, the Denver Broncos cheerleaders are sponsored by Dr Ben Lee, a plastic surgeon who specializes in breast augmentation, and Laura Vikmanis, a Cincinnati Bengals cheerleader, says in her memoir that at least half of the 36 cheerleaders have implants, and a third of those without are planning to get them, and that there was much dissension in the cheerleaders’ locker room between the haves vs the have nots. A Philadelphia plastic surgeon cited Vikmanis’s book on his website in relation to the Philidelphia Eagles cheerleader tryouts. He commented on the rigors of NFL cheerleading: “Twice-a-week weigh ins and the grueling conditioning routines make it hard for women to maintain adequate fat reserves to have proportionate and shapely breasts, so breast implants are often the only way for women on the squad to remain both fit and feminine.” Breast implants are the only way for an NFL cheerleader to look fit and feminine? Wow. We certainly wouldn’t want women out there running around with disproportionate and unshapely breasts, would we?)
The NFL’s “A Crucial Catch” program aims to increase breast cancer “awareness” but I can’t help but ask why we’re so fixated on awareness, when being aware of the disease does nothing to cure it. Why does the program exhort women older than 40 to get an annual mammogram, when mammograms don’t save lives? Does anyone really find the “early detection” message touted by programs such as this to be effective? Sports Illustrated writer Peter King is of like mind, and after he tweeted “Please. Not pink for a month, NFL. A week, great. But a month?” he found himself on the receiving end of a lot of criticism, with people responding outright hatefully. Writer Mary Elizabeth Williams came to King’s defense on salon.com. She pointed out that it’s possible to hate the disease as well as the commodification. And, as she astutely points out, “because if we didn’t see pink on the football field throughout October, how else would any of us know that it’s breast cancer awareness month? How would we be aware?” Breast Cancer Action executive director Karuna Jaggar adds “We don’t need more awareness; we need solutions. We’re looking for progress that makes a difference in addressing and ending this breast cancer epidemic.” Does anything about A Crucial Catch speak to the breast cancer epidemic?
Secondly, show me the money. Several groups have had a little look-see into the NFL’s A Crucial Catch program and found that while it may be eye-catching, all that pink isn’t doing all that much good for the actual disease or the people suffering from it. Proceeds from the NFL pinking it up go to The American Cancer Society, which sounds pretty good, but Business Week discovered that just 5 percentage of sales will make its way to the ACS. According to Business Week, for every $100 in sales of pink products, $3.54 goes toward research while the NFL keeps approximately $45. Considering the NFL’s healthy revenue last year, and the crazy salaries NFL employees make, this seems particularly stingy. An NFL spokesperson countered the Business Week report by saying that while the league does not dispute the numbers above, it does not profit from the sale of pink merchandise, but that whatever money isn’t donated to the ACS is spent covering the cost of the Crucial Catch program, which is designed to increase “awareness.” Ah yes, the same type of accounting that caused the Susan G Komen for the Cure to fall out of favor with the very women it’s supposed to be helping. Spending such a disproportional amount of money on “awareness” instead of research is nothing short of irresponsible.
My third issue with the NFL going pink may be unpopular, but the fact is, the NFL doesn’t seem overly concerned with women’s issues or our bodies. Exhibit A: the cheerleaders. What exactly does a bunch of tarted-up, implant-sporting women gyrating on the sidelines have to do with the game? Do the fans in the stadium need to be encouraged to cheer for their team? Do the viewers at home require a bit of eye candy to break up the monotony of seeing big, sweaty men up close and in high def? More importantly, did anyone from the NFL think about how breast cancer survivors might feel seeing the NFL cheerleaders decked out in pink boy shorts and itty bitty tshirts that can barely contain all the breastly goodness of those augmented cheerleaders? Does the NFL think that breast cancer survivors need yet another hit to their flagging body images and fledgling self-esteem after radiation mutilates our breasts and surgeries remove them altogether?
Exhibit B: the league is historically soft on players who’ve been charged with crimes against women. Columnist Maura Kelly wrote about this for the New York Daily News, citing cases such as the one against Hall of Famer Lawrence Taylor, in which he admitted to raping a 16-year-old girl in 2010. And that of famed quarterback Brett Favre being accused by more than one woman of sexual harassment. And that of Steelers quarterback Ben Roethlisberger being accused of sexual assault by two different women. Defensive tackle Albert Haynesworth got handsy with a waitress last year and pleaded no contest to her charges of sexual assault. None of these players received more than a slap on the wrist from the National Football League. Yet, during the month of October, the league wants me to believe that it cares about me and million of women across the country? Throw a bunch of pink on the field and call it good?
Nice try, NFL, but I’m not buying it. It’s going to take more than pink accessories and lip service about the importance of screening to convince me that the league really cares about women.
How many more days until October ends?
Yesterday I was picking up a prescription at Walgreens — finally one that has nothing to do with breast cancer or the post-mastectomy infection that plagued me for more than a year — and I smiled to myself as I waited in line behind the senior citizens getting their Lipitor and the mom with 3 small kids getting her flu shot (good idea, with those little snot machines attached to her every appendage, said the germophobe in me). I smiled to myself despite the fact that as soon as I walked in the door I was confronted by the display of “pink ribbon products” designed to “raise breast cancer awareness” and “help save a life.” Quotation marks very definitely mine, and intended to convey the maximum amount of snark possible.
I smiled in spite of having passed the pinked-up display of nail polish, glittery lip gloss, pink-ribbon bedecked emery boards, and “hope, faith, and a cure” shower caps (how in the world have I managed without one of those?). I smiled to myself because I was upright, in line at Walgreens under my own steam, having driven myself on a brilliantly sunny day without help from anyone. While my knee is still in recovery mode from the most recent repair, I’m for the most part healthy and able-bodied.
I’m healthy and able-bodied and going about my routine on a very ordinary day with no surprises like finding infection-riddled, 3-inch blisters that were hanging from my mastectomy scars like stalactites hanging from a cave wall. Like the sharp pain that literally felt like a knife blade stabbing through my chest wall as the nerves tried to regenerate after being sliced & diced, post-mastectomy. Like the shock of having caught a glimpse of my new profile in the glass of a store window. Like the pulse-pounding, breath-stealing fear of recurrence that plagues me and other cancer warriors on a regular basis.
No, no surprises yesterday as I waited in line at Walgreens. Instead of surprises, I felt a sense of happiness. A sense of calm. A sense of — dare I say — normalcy. Just an ordinary woman on a routine errand to pick up an RX for low thyroid. I’m far removed from the multiple trips a week to Walgreens that were necessary during the infection phase, and now that I get my cancer-related maintenance meds through the mail, Walgreens is not a place I make an appearance on a thrice-weekly basis.
I was a happy girl as the pharmacist handed me my new prescription, which will hopefully kick-start my lazy thyroid into gear so I can manage to not collapse at 8 pm every night like a cranky toddler. I was happy and calm and normal, until I swiped my credit card and the little machine asked me if I wanted to donate to the Susan G Komen for the Cure. There was the infamous pink ribbon logo atop neat little boxes offering a $1, a $5, a $10 or a $50 option to add to my pharmacy tab.
And just like that, my ordinary day turned on me.
This, my friends, is why I hate October. This is why pinkwashing makes me see red. This is why I rant and rail in this blogspace about the messed-up system that has deemed an entire month for “awareness.”
I AM AWARE OF BREAST CANCER.
Whew, I feel a little better. I wanted to do that in Walgreens yesterday, but I did not. I did not curse, stomp my feet, smash a single thing, or whack a single person. And for that I would like a medal. Or a trophy. Or a cold beer.
I’m glad that the grand poohbahs who run the Walgreens corporation place an emphasis on charity. I like charity. I think charity is a good thing. But come on, does it have to be Komen, and does it have to be so in my face all month long?? In all fairness, it’s possible that Walgreens does shove other charities down customers’ throats in other months of the year and this particular customer hasn’t noticed. But I’ve swiped my card at the pharmacy window many, many, many times at Walgreens and never been accosted by a “donate now” screen on the little machine. I’m quite certain I was swiping my card through that same machine many times the last 2 Octobers and did not see Komen with its hand out and its “Remember you had cancer, lady” banner flying.
Trevor and I had a lively discussion last night, and again this morning, about the whole pinkwashing/Pinktober/Komen/awareness issue. The course of the conversation ran from why all the pink makes me crazy, how unfair it seems that other cancers don’t get so much attention and hype, how the awareness idea has gone wrong, and which causes are worthy of pink dollars. The consensus was this: the time for awareness has long come and gone. We are all well aware of breast cancer. Komen did great things for breast cancer, and the awareness, in the early days. Members of the pink ribbon club owe Komen a debt of gratitude, IMHO, for de-stigmatizing the disease and for making it culturally acceptable to talk about breasts in a medical context. But there are many, many other deserving and hard-working charities that do more actual good for the women and men who suffer from breast cancer. I’m happy to see that some of those causes are gaining attention and getting a piece, or a few crumbs, of the Komen pie. However, we have a long way to go, which is why I’m compelled to yell my head off in this little blog about things like how precious little of Komen’s huge budget actually goes toward research. How infuriating the pinkwashing pandemic is to those of us who’ve walked miles and miles in pink shoes. How the blatant sexualizing of breast cancer makes me want to throw up and punch someone at the same time. How seeing a grown woman in a “Save the Tatas” shirt causes me to go all Serena Williams on her in the grocery store.
This is the reality of October for breast cancer survivors/warriors/victims/patients. And it stinks. I find myself counting the days until this month ends. That it’s also the month in which my sweet mama died from the insidious ovarian cancer that stalked her for years just adds to the misery. What I wouldn’t give for one day, just one day, in which cancer didn’t smack me — and millions others like me — in the face. Even on an ordinary day, cancer has the ability to knock me senseless and dare me to right myself and keep on keepin’ on, yet again. Cancer is such a bitch.
It’s not just an excuse to go postal or blow off some steam, it really is making me crazy. The prolific presence of Pinktober is making me nuts. I’m seeing red (of which pink is a derivative, I suppose). The other day, a woman in the grocery store was sporting one of the worst pink offenders, IMHO, the “Save the Tatas” shirt. I saw her and her offending shirt in the produce aisle and felt a sick feeling in my stomach. I was barely in the store and was already being thrust into the belly of the beast. Just walking in the store, I was accosted by a huge display of “awareness” crap — flower arrangements, helium-filled balloons, potholders, even pink-ribbon bedecked cakes, for cryin’ out loud. Sheesh.
Do those of us who have tangled with this damn disease really need to run the gauntlet of reminders of said disease just to get into the grocery store? Sheesh.
Maybe the display of pink junk that greeted me at the store set me up so that when I saw the “Save the Tatas” shirt, I was primed and ready for a tussle. I tried to be respectful. I did. I entered into the conversation with every intention of getting her point of view. I’m curious, genuinely curious, as to why a grown woman would sport such a message across her chest. So I pointed to her shirt as our paths crossed by the giant pile of pumpkins (which thankfully had not been painted pink). I asked her if she’d had breast cancer. Just curious. She said no, she has not had breast cancer. Oh, so you know someone who has? I asked. No, but she bought the shirt to support breast cancer awareness.
Ah, yes, “awareness.” More “awareness.” The “awareness” we all so desperately need.
The interrogation continued as I asked her if she was aware of how buying the shirt helps, and what, in her opinion, does “awareness” even mean? She didn’t really have an answer for that. Huh.
I pressed on, like a dog with a bone, and asked if she was aware of which charity received proceeds from the purchase of that shirt. Again, no answer. At this point, she was probably wondering how to contact security in the grocery store. I concluded our little chat by telling her that I have had breast cancer, and I do know many other women who have as well, and that those of us in the pink ribbon club don’t care for those shirts because some of us were put in the unpopular position, through no fault of our own, of not being able to “Save our Tatas,” and that seeing such messages serve as a stark and unwelcome reminder of that most unpleasant fact.
She said she’d never thought about that. She was not aware of that.
I bet she’s also not aware of the fact that once you lose your tatas, each and every glance downward or glimpse in a mirror is a smack in the face. That even after reconstruction — or multiple reconstructions — those tatas will never be the same. Some women end up with a version they like better. Some end up with a version that makes them sad each and every time they see that new, not-so-improved version.
She and I parted ways, me feeling marginally better for having unburdened myself, her probably feeling like she needed to go home and lie down. Hopefully she went home and threw that damned shirt in the garbage, where it belongs.
Then I hear that our local professional soccer team, the Houston Dynamo, is hosting an “awareness” event of their own tomorrow. The first 5,000 fans at the Breast Cancer Awareness Match will score a mini pink soccer ball. Sweet.
Not so sweet.
Tell me, please, anyone, what the scantily-clad cheerleader in the pink attire has to do with breast cancer? Or is that what it takes to get people to attend the event? Questions, people–I have questions!
I had to dig pretty hard to find any info on the actual event. While these images are splashed all over the web, details on what the event really is all about remain elusive. The Dynamo website shows a much less exciting image:
But when I clicked on the link to bobby boots breast cancer/Dynamo Charities, I got nowhere. The computer told me that the page I sought could not be found. Bummer. My next question: is the bobby boots breast cancer image above, with the philanthropic player (who I assume is Bobby) and the soccer-cleat-wearing pink ribbon, that much less effective than the perky cheerleader in her push-up bra? Do people really care less about this dreaded disease if it’s marketed without actual images of breasts?
Great, here we go again.
This time, I didn’t accost the person sporting the offending message because the light turned green. But I wanted to. I wanted to say, Can you imagine in your wildest dreams putting sticker on your car that says “balls! support testicular cancer research!” Or “ovaries! egg-makers or silent killers?” No, me neither. As the shirt says, It’s all about the boobies.
It certainly isn’t “all about the boobies” — it’s about a woman’s life, and how BC threatens and too often takes her life. I’m still waiting for an explanation of how any of this boobie culture makes any difference in the “fight” against breast cancer. If you see a guy wearing a shirt like this, does it enact any change whatsoever in the BC arena?
I wonder how he would feel if I wore a shirt saying “PROSTATES make me happy”? I can’t even find an image of such a shirt because guess what — it doesn’t exist! No, instead the prostate cancer “awareness” shirts look like this:
“I Wear Blue for My Dad” conveys a slightly different message than “Save Second Base.” It says the focus is on the person, not the body part. The take-away message here is that sexualizing a devastating disease does nothing for those who suffer from it.
Well, wait a sec — I take that back. Sexualizing a devastating disease does do something for those who suffer from it. It makes them feel bad. Really bad. It makes them mad. Really mad. It makes them want to accost random people in the grocery store or at the bank and set them straight. It makes them have to confront the fact that at this very moment, they may be crossing that bridge from “survivor” with NED to stage IV without a cure. I will never, ever forget the feeling of utter fear when the first oncologist I consulted said once a cancer comes back, no matter what stage it was upon original diagnosis, the recurrence sends you straight to stage IV and you’re considered incurable. Not that you’re going to die from it, as many stage IV cancers can be managed, but treatment is ongoing, as in, for the rest of your life (however long that will be).
That, my friends, is the reality of breast cancer. Not a cutesy slogan. Not a titillating (pun intended) t-shirt. Not an overtly sexual bumper sticker. It’s not about the boobies. It’s about my life.
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.
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.
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.
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.
And for that, I’m grateful.
I woke up in a snit this morning. I have been dreading this day for a couple of weeks, from the first glimpse of the ubiquitous pinkwashing that occurs every October. It’s the official start of “Breast Cancer Awareness” Month — quotation marks mine, because I really can’t in all seriousness say that phrase without denoting how absurd the “awareness” idea is. I have a lot of ire toward Pinktober and the pinkwashing of everything from toilet paper to yogurt. As someone who went toe-to-toe with the dreaded disease, I find it offensive that corporations can still hock their wares under the guise of awareness. Is there really anyone on this planet not aware that breast cancer exists? Come on. Enough with the awareness. Try doing something really meaningful, like slashing the pinkwashing advertising budget and cut a check directly to a do-good organization.
I noticed the Pinktober creep starting a couple of weeks ago. As I pushed my grocery cart through the store, filling it with the provisions that keep my family up and running, I saw something awful out of the corner of my eye.
Pink-ribbon saucepans, and water bottles, and plastic containers. Oh great, here we go again. I wonder if any of that wall of pink plastic is BPA free? The studies that link BPA, a common chemical in rigid plastic, to breast cancer, are piling up at an alarming rate.
It gets worse — pink-ribbon hair brushes, so you can brush for the cure. Unless of course you’re undergoing chemo and have no hair. I’m sure the bald BC patients shopping for groceries appreciate the reminder that wait — not only do you have a scary-ass disease, you’re also bald and vulnerable and grappling with negative body image. Thanks, Revlon. This pinkwashed product seems particularly crappy.
I’m lucky I didn’t throw up in my mouth at the first of this year’s crop of pinked-up junk masquerading as charitable fundraising products. I guess the junk is designed to give shoppers a warm-fuzzy feeling about doing something important for the disease that descends upon one in eight women in the U.S. every year. The products themselves make me sick, but the fact that the pinkwashing starts earlier and earlier is really disgusting. As if the Christmas Creep isn’t bad enough, we now must endure the Pinktober Creep as well. Son of a nutcracker.
If buying pinked-up products could cure breast cancer, dontcha think it would’ve by now? Why not cut out the middle-man and send your hard-earned and well-meaning money straight to an organization that can actually do something useful?
Like my friend Jen at ihavebreastcancerblog, who is also blogging about Pinktober, I wore a pink shirt today. Not because I want to commemorate “Breast Cancer Awareness Month,” but because it matched my bright blue Nike shorts with the pink & white stripes, and as I headed to the gym for another grueling post-knee-surgery PT session, I needed the lift that a well-put-together outfit can provide. The pink shirt in question happens to be my survivor shirt from last year’s Race for the Cure. My first — and only — Race for the Cure.
After the gym, I was in the drive-through lane at the bank, and the bank teller was super chatty. I’m all for some friendly chit-chat from a service provider, as long as they can multitask. If they can talk and conduct business, fine with me, chat away. But if they have to stop to chat, uh-uh. Nope. Zip it and get your work done. I don’t want to take time to listen to idle chatter from someone with whom I’m not likely to form a relationship. Does that make me cranky? crotchety? unfriendly? mean? Maybe. But I’m honest. The last thing I want to do is listen to someone blather on while I wait for them to do the job they’re supposed to do. So when the bank teller started chirping about how it’s the perfect day for a convertible, and asking me if I’m working today or just out enjoying the day, I could feel myself getting snippy and impatient. When she asked if I had a good weekend, I was about to turn off the smile and figure out a nice way to say, “Hurry the hell up, lady. Less talking, more working.” Deep breaths, deep breaths.
She noticed my Race for the Cure t-shirt and commented on it. I haven’t worn this shirt since I learned the ugly truth about the Susan G Komen organization and how precious little SGK has done to actually look for, much less find, a cure. Once the SGK-Planned Parenthood debacle occurred, I decided that SGK would not get one dime from me, ever again. I did the Race for the Cure exactly once, to see what it was all about. It was a nice experience, but I’d rather send my $40 registration fee someplace in which it has a shot at making some real progress instead of lining SGK founder Nancy Brinker’s pockets and/or perpetuating the farce that SGK is committed to ending this wretched disease.
The chatty teller asked me if I was going to do the Race for the Cure again, and I said no. Sometimes I wonder why I’m compelled to answer so honestly rather than just tow the party line and say what people want to hear. Then I realize that wondering something like that is akin to wondering why the sky is blue instead of green, and that it’s utterly pointless to expect things like that to be different. Anyhoo, I told the teller that no, I will not be doing the Race for the Cure again, and of course I proceeded to tell her why.
She may be somewhat sorry she chose to be chatty with me today.
She got a bit of an earful. A well-reasoned and calm earful, but an earful none the less. I explained that before being inducted into the Pink Ribbon Club, I knew Susan G Komen for the Cure was the leading breast cancer organization, and that it wasn’t until I acquainted myself with more than just the superficiality of SGK and its pink-ribbon-bedecked world that I realized that the group wasn’t exactly working hard to find a cure. Silly me, I thought that if “for the Cure” was part of the group’s official name, so much so that it would sue others for harmlessly using it for their own fundraising, that the group might actually be focused on finding a cure for this disease that had so rudely interrupted my life. Not so with SGK. Instead of funneling the majority of its funds toward finding a cure, it instead chooses to focus the majority of its resources on education and “awareness.” As someone who has walked more than a mile in pink shoes, I can’t abide SGK’s priorities. As stated on its website: “In 1982, that promise [between Susan G Komen and her sister Nancy Brinker] became Susan G. Komen for the Cure® and launched the global breast cancer movement. Today, Susan G. Komen is the boldest community fueling the best science and making the biggest impact in the fight against breast cancer. Thanks to events like the Komen Race for the Cure, we have invested almost $2 billion to fulfill our promise, working to end breast cancer in the U.S. and throughout the world.”
Sounds good, right? But think about it — if SGK is the best of the boldest and has been working toward a cure since 1982, wouldn’t you expect to see more progress? Thirty years. And very little change.
In fact, The American Cancer Society says this about the incidence rate of BC:
• Between 1975 and 1980, incidence was essentially
• Between 1980 and 1987, incidence increased by 4.0%
• Between 1987 and 1994, incidence was essentially
• Between 1994 and 1999, incidence rates increased by
1.6% per year.
• Between 1999 and 2006, incidence rates decreased by
2.0% per year.
It wasn’t until 1999 that BC rates decreased — 20 years after SGK came on the scene — and even then, by 2 percent a year. Does that sound like progress? Does that sound like “for the Cure?” Not so much. I did not whip out the above statistics for the chatty bank teller (I do have some standards, after all, even when I’m ranting to a total stranger through a plexiglass window), but I did tell her that this is why I won’t do another Race for the Cure or support the Susan G Komen for the Cure. She did ask, after all.
She said she had no idea. She thought that SGK did all kinds of good things for breast cancer, and that they raised a lot of money to find a cure. I said she’s right about part of that: Komen does raise a lot of money, but precious little of it goes toward the research needed to find the cure. She asked me how much of Komen’s money goes toward research, and when I said the best estimates are no more than 19 percent, she was stunned. Perhaps I should have felt a bit badly for bursting her bubble, but instead I felt triumphant when she asked, if not Komen, then who?
Cue the choir and release the confetti bombs!
I told her that personally, I like The Rose right here in Houston, and applaud the efforts to make a real difference in the lives of women with breast cancer, especially those who are traditionally underserved by screening, prevention, and treatment. I also like Dr Susan Love’s group, the Dr Susan Love Research Foundation. The DSLRF is determined to find the cause of breast cancer, not just tie a pink ribbon around the idea of it. Dr Love has been oft quoted as saying, “The key to ending breast cancer is to learn how to stop it before it starts.” She also says:
“I have spent my whole life working in the field of breast cancer. At this point I am frustrated that we are still doing the same treatments with about the same results as when I started thirty years ago. Now that we can get to where breast cancer starts we have the opportunity to eradicate it. I am excited and impatient. The road is clear. We can go slowly or quickly, but everyday that we delay another 592 women will be diagnosed and 110 will die. The cost is too high to hesitate. This is our job not our daughters’, granddaughters’, nieces’ or nephews’. We can do it and we have to do it!”
Thanks to The DSLRF’s focus on research, we’ve moved from throwing around “for the Cure” to actually working to figure out and eliminate the disease. I like Dr Love’s idea of eradication much better than Komen’s “idea” for the cure.
Now is a great time to mention Dr Love’s latest initiative: The HOW Study. To get the word out about The HOW Study, Dr Love is encouraging us to Blog with Love. Today’s the day for the third-annual blogger initiative, and I’m all in! The HOW Study, along with The Army of Women, is in my opinion much more viable and holds much potential to enact real change. I’ve participated in several Army of Women studies and will continue to do so every chance I get. I encourage everyone reading this to check out The Army of Women and see if there’s a study that applies to you.
The HOW Study is a ground-breaking study for women (and men) who have no history of breast cancer. See, the majority of women diagnosed with BC don’t have a family history of or clinical risk factors for the disease. Dr Love wants to figure out what causes the disease so we can figure out how to stop the disease. Dr Love’s website says that 280,000 women were diagnosed with BC last year. Of those, 40,000 women will die from the disease this year. You can help turn those numbers around by joining The HOW Study.
I’ve just decided I’m ditching my Race for the Cure shirt and am going to get this shirt instead:
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.
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.
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.
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.
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 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” 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.
There. Now don’t you feel more aware?