If not Komen, then who?

Because it’s Pinktober, the month for breast cancer “awareness,” you can’t swing a cat without hitting some form of pink merchandise allegedly deemed charitable and “for the cure.” Now, before all you cat lovers get up in arms, I wouldn’t really swing a cat, it’s just an expression from my neck of the woods. I’m not a cat person and have never had one as a pet, but I believe in animal rights for all critters, including cats.

Before I was diagnosed with the dreaded disease and in the early days of my cancer “journey,” when I thought of BC charities, I thought of Susan G Komen for the Cure. It wasn’t until I became better educated, as a member of club to which I did not want to belong, that I learned  how shockingly little of Komen’s resources actually go toward “the cure.” The much-beloved blogger Rachel Moro of The Cancer Culture Chronicles deserves the credit for my education; to see how beloved she was, click here. Sadly, Rachel died from metastatic breast cancer in February at age 42. Words fail me when I try to explain how instrumental and important Rachel is (present tense very much intended) in the ongoing march toward transparency in BC charities and in dethroning Komen as the go-to breast cancer charity.

Rachel was tireless in her efforts to remove the emphasis from awareness and place it where it belongs: on research. She wrote so eloquently and so passionately:

Education, screening and treatment won’t “cure” my cancer.  Sure, by being “educated” I might be able to find out more about my particular type of breast cancer. By being “screened” I might be able to see if my cancer has spread.  By being “treated” I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can “end breast cancer forever” is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period. Spending anything less than the bulk of its resources on research, clearly does not support Komen’s mission of ending breast cancer forever.

I’ve said before that while Komen has done much to eliminate the shame and scandal that once was associated with breast cancer, in the 30 years that the organization has been working “for the cure,” not much has changed. 30 years. No cure. Nothing even close to a cure.

The statistics are alarming. Being diagnosed with cancer is scary enough, but to also learn that advancements toward a cure are nonexistent is terrifying. The American Cancer Society estimates for 2011 predicted that some 230,480 women would be diagnosed with an invasive breast cancer, and an additional 57,650 women would be diagnosed with an in situ breast cancer. For the uninitiated, in situ breast cancers are located within the milk ducts (ductal carcinoma in situ, or DCIS) or breast lobules (lobular carcinoma in situ or LCIS), in the same spot the cancers began. Invasive breast cancers are those that originate in the ducts or lobules but have broken through to invade surrounding breast tissue. The majority of breast cancers are invasive, and many women, including yours truly, find themselves with both in situ and invasive cancers, both at the same time; sometimes in the same breast, even.

The ACS reports that since 2002, breast cancer incidences rates have remained relatively stable. So in the 30 years that Komen has been promoting its pursuit “for the Cure” and in the last decade of ACS records, not much has changed. What needs to change is the shift from “awareness” to research. As Rachel so astutely pointed out, the best path “for the cure” is through research. What causes breast cancer? What makes it recur? How can it be prevented?

Now that we know that Komen hasn’t really done all that much toward finding a cure for breast cancer, the question becomes, if not Komen, then who? My blog friend at I’ll Drink to That raised an important question in a comment to this blog post when she asked, “Who should my money go to? I don’t want it to go to pink socks for football players, or stupid tshirts or pink nail polish – I want it to make a difference.”

Who should my money go to? Excellent question. The short answer, IMHO, is anyone but Komen.

And here, ladies and gentlemen, are some ideas.

Research-based charities: You’ve got the heavy-hitters, like  MD Anderson, right here in my fair city. There’s also The Dana Farber Cancer Institute in Boston, and Memorial Sloan-Kettering Cancer Center in New York City. Those 3 links take you to each org’s donations page.

Beyond the hospitals, there’s the Dr Susan Love Research Foundation. This is one of my faves, and I’ve blogged about it here and again here, because the focus is on the research that will stop breast cancer before it starts. What a dream come true! Breast Cancer Action is a fantastic organization founded by BC survivors whose goal is to “inspire and compel the changes necessary to end the breast cancer epidemic.” The Breast Cancer Research Foundation was founded by an executive from the Estee Lauder company, and the foundation funds nearly 200 scientists working on the breast cancer puzzle. The National Breast Cancer Coalition has declared January 1, 2020 as its deadline for ending breast cancer forever. I’d like to see that goal realized.

Local breast cancer charities: Google “breast cancer charity” and your city. You should get several hits that aren’t Komen-related. My favorite in my city is The Rose. Here, insured women and women who can pay for services help offset the costs for women who are uninsured or who cannot pay. It’s been estimated that women with insurance have breast tumors diagnosed when the tumors are about the size of a raspberry. Women without insurance are diagnosed with tumors the size of a tangerine.

Site-specific breast cancer charities: One of the most intriguing is My Hope Chest, which offers financial assistance to women for reconstruction-related expenses. Even with insurance, reconstruction is expensive. Metavivor focuses on research for metastatic breast cancer, or BC that has spread. Look Good Feel Better uses the idea that if cancer patients look more like themselves–and less like cancer patients–during treatment, their self-esteem will increase ans so will their ability to cope.

There are ways to help beyond spending money, too. If you are considering buying a pinked-out product that claims to help fight breast cancer, read the fine print to see which charity is receiving proceeds. If it’s a charity that isn’t actively working toward research, perhaps you can select another product or skip it altogether. Volunteer at your local hospital or breast screening center. Speak up: if the preponderance of pinked-out product placement bugs you, say so. Tell your grocery store manager that you don’t like it. If you come across campaigns that seem more about the boobs than about the disease, contact the purveyor and say so. Spread some cheer to someone on the cancer “journey” by reaching out to them, regardless of how well you know them. A text, email, or greeting card saying “I’m thinking about you and I support you” is a small effort with big impact. Join Dr Susan Love’s Army of Women in which women–with and without breast cancer–of all ages and ethnicities can participate in a variety of studies & surveys.

And this concludes our lesson on if not Komen, then who? Class dismissed.


Cancer is such a bitch

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.

 


O-O-O-Oprah!

My bestie Yvonne and I went to see Oprah on Friday, and wow, wow, wow, what an event! The Queen of the World brought her road show to Houston to tape 4 episodes of LifeClass, a show on the OWN network. Lifeclass is described on her website as “a program that showcases all of Oprah’s lessons, revelations, and aha moments over the past 25 years broken down to help make your life better, happier, bigger, richer, and more fulfilling.”

Sounds good, right?

She and her crew travel around the country and, along with a co-host who is the resident expert on the topic du jour, teach the rest of us how to live our best lives. It’s a social networking explosion with participants joining in from across the globe via Skype, and the audience members are heartily encouraged to post on Facebook and Twitter while the shows are being taped.

Yvonne spotted the chance to enter the lottery for tickets to the 4 shows being taped last week in Houston, and when she came up the big winner she invited me to be her date. We had such a fun day — in typical Texas fashion, we started early and ended late.

About our pre-Oprah lunch at the Backstreet Cafe, I have one word: yum.

We both chose the crab salad, and I’m so glad we both ordered it or we might have come to blows over it. I love Yvonne way too much to fight her, but yes, it was that good. It reminded me of the famous crab towers our dear friends the Cremers fed me on one of my first outings after my double mastectomy. The Cremers’ version has more avocado and more citrus, which gives it a slight edge, IMHO. 

Tummies full, we headed to the Hobby Center for the main event. We were instructed to arrive early and wear bright colors, which look best on TV. Audience members have the opportunity to fill out a questionnaire and share things from their personal lives in hopes of being part of the show and interacting with Oprah and her co-host. Yvonne and I declined; I figured I get all the therapy I need by spilling my guts and ranting about life’s injustices on this little blog. I don’t need to be on TV with Oprah and her resident guru.

The set was rather minimalist, with a simple white table and 2 white rolling chairs that look like something you’d see in a home office. Several screens lit up the backdrop: one devoted to the live Twitter feed, one for the Facebook posts, a couple for quotes as the show progressed, and a big one for the Skype participants. The lights were quite bright, and I kept thinking they would dim as Oprah and her guest came onstage, like in the movie theater. They did not. 

Before Oprah came onstage, her senior audience supervisor, Sally Lou, came out to read us the fine print and go over the rules, then get us fired up for Oprah! Sally Lou was perky and funny and incredibly energetic, especially considering they had already taped 2 shows with Joel Osteen that morning. She wrangled the crowd and had everyone hootin’ and hollerin’ when it was time for Oprah to appear. 

The moment in which the announcer introduced Oprah and she took the stage was no doubt one of the most powerful things I’ve ever experienced. 

The crowd was in a frenzy. Everyone was on their feet, and the cheering was deafening. I can’t even imagine what it must be like for Oprah to experience that everywhere she goes. 

Yes, the photo is blurry, but it’s Oprah!! In person!!

For the first segment, she wore a cute magenta dress and heels. Her look was very simple, as if she wanted the color and cut of her dress to speak for themselves. She looked trim and healthy, and was full of energy despite the fact that it had already been a long day before she started our taping. She changed into an orange dress for the second segment, which I didn’t bother photographing because I could tell the iPhone pic of the magenta dress was going to leave much to be desired.

Watching her do what she does was quite simply fascinating. She is just as polished and professional as you might imagine. She is warm and funny, and her interactions with the audience were personable and fun. Her co-host for our tapings was Rick Warren, author of The Purpose-Driven Life and pastor at Saddleback Church in Southern California. I tried to read his bestselling book when it first came out and was all the rage, but it just didn’t work for me. I’m pretty much the only person it didn’t work for, though; Oprah says it’s sold some 30 million copies worldwide, has been translated into more than 50 languages, and is the bestselling nonfiction hardback book ever, second only to the Bible.

That’s ok, I’m used to marching to my own beat.

Anyhoo, Rick Warren is similar to Oprah in that he’s very, very good at what he does. He seems quite personable for a multi-millionaire, and has no trouble filling the air space with his parables and personal stories. He’s a bit too preachy for me, and there were times in which my attention lagged while he ventured off on yet another sermon-y lesson, and the majority of the advice he dispensed seemed very much based in common sense. Yvonne and I felt like quite the smarty pants because we were way ahead of Pastor Rick’s advice to the struggling and lost souls who sought solace from his folksy, common-sense wisdom.

Both tapings we witnessed are scheduled to air in January 2013, so Oprah said “Happy New Year!” a lot. I’m sure glad she didn’t slip up and make reference to the fact that it was 90 degrees in Houston Texas that day! That would have been a bit incongruous with a January airing. The first segment centered on Rick’s update to The Purpose-Driven Life, which will be published soon. I didn’t get the exact date because frankly, if I couldn’t get through his book the first time, the updated version holds little interest for me. The theme is how to manage the cards you’re dealt, which is something everyone can likely relate to, regardless of whether they find Pastor Rick a bit too preachy and a bit too sermon-y. The one thing he said that really stuck with me, out of the hundreds of soundbites and cleverly packaged sayings he shared, is this: “A wise person can play a bad hand and still be a winner.” True dat. He’s also a big believer in happiness being a choice and reminded all 3,000 of us in the Hobby Center that we can be as happy as we choose to be.

I was happy when Oprah delivered this pearl of wisdom in regards to the practice of comparing ourselves to others and trying to keep up with the Joneses: “You can only wear one pair of shoes at a time.”

I like that little reminder and find it quite timely in our world of ever-increasing stuff and the pursuit of more of it.

She also said “I know a lot of famous people, and I know a lot of wealthy people, but I don’t know a lot of powerful people.”

There’s an aha moment for ya.

The second segment focused on what our reason for existence happens to be. Pastor Rick seems determined to make sure each and every one of us finds out why we’re on this Earth. He spoke a lot about a life of service (which, as an at-home mom I feel quite well-versed in, thank you very much). His idea of a life of service is a bit more big-picture and a bit more mission-oriented than mine. Personally, I don’t think one must dig a well in Central America or teach English to Indian children in a primitive village to serve. In my small-world application, serving others might mean parenting my different-as-night-and-day children in the manner that suits them rather than the one-size-fits-all approach that may be easier for me. It might mean speaking openly and honestly about the ugly truth of breast cancer instead of tying yet another pretty pink ribbon on it and adding another coat of glossy pink lipstick.

As Oprah finished the second segment, she spoke directly to us, the audience. The first thing she did after the show ended was take off her shoes. She stood at the edge of the stage and thanked us for taking the time to get dressed up and for coming to see her. When someone from the audience yelled out to ask if she’d take a picture with them, Oprah flat-out said no and went on to explain that if she took a picture with one person, everyone else in the Hobby Center would want to do the same and none of us would ever get out of there. I really respect that, and it demonstrates that she practices what she preaches when she counsels her viewers to stand up for themselves, to do the right thing even if it disappoints someone. As someone who lives and dies by ratings, it would be easy for Oprah to get caught up in the idea that if she says no to a viewer’s request, they might not like her anymore, and her livelihood and her very existence is predicated upon people liking her and tuning into her shows. Granted, at $2.7 billion she can afford to have a few people be ticked at her. I was perfectly content to leave without a picture of myself and Oprah; I’ve got plenty of good memories of our time together on Friday afternoon.

Trying to decide what our purpose on Earth is generated a powerful hunger, and our delectable crab salad seemed long gone by the time we crawled through traffic in downtown Houston and away from Oprah.  Several roads around the Hobby Center were closed in preparation for the next day’s Komen Race for the Cure — how ironic that Komen impeded progress even as we tred to get to dinner. After navigating the detour for the cure, my foodie friend and I headed straight to Brasserie 19 to fortify ourselves. We talked the whole way out of downtown about what we think our reasons for existing may be. Yvonne’s seems easy: she’s a therapist and she helps lots of people with real-world problems. Mine seems more elusive. She suggested my little blog may be part of my purpose in life: to blab ad nauseam about breast cancer truths or any other topic that flits into my head. Perhaps.

While we may not have figured it all out, one thing is for sure: with all of Oprah’s talk of Happy New Year, we decided that our purpose in that moment, after a glorious day in a once-in-a-lifetime arena with Oprah, was to celebrate life and drink champagne. 

Happy New Year!


Pinktober is making me crazy…for realz

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.

Huh.

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.

But this is how they choose to market the event.

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:

houstondynamo.com

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?

I was still full of questions when I saw this on a car:

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:

and 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.

 


A pretty pink piece of mail

Because 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

ort this

or this 

or this

or this

or this

or this

or good-golly-miss-Molly this

And for that, I’m grateful.

 


Blog with love

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. 

What about a pair of pink-ribbon socks? From the grocery store. Yeah, I bet those are soft and cozy. And how much of the $1 price tag is going toward any kind of change on the BC front?

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
constant.
•  Between 1980 and 1987, incidence increased by 4.0%
per year.
•  Between 1987 and 1994, incidence was essentially
constant.
•  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:

zazzle.com