Archive | September, 2011

Dear Susan G. Komen . . .

27 Sep

Breast Cancer Action has written a letter to Susan G. Komen requesting that SGK agree not to “pinkwash” and to recall their “Promise Me” perfume. Here, they ask you to join them I did. I hope you will too.

Here is what all the stink is about.

Susan G. Komen launched their “Promise Me” perfume (which shares the same name as Nancy Brinker’s latest book . . . talk about branding) in the name of breast cancer. “Promise Me” perfume sells for $59.00 with less than two dollars of the sale price going to breast cancer research.

Not So Sweet Smelling After All

But, here is where it really gets smelly:

After conducting an independent laboratory study, it was determined that “this perfume contains chemicals that are a) categorized as toxic and hazardous, b) have not been adequately evaluated for human safety, and c) have demonstrated negative health effects. Source: Breast Cancer Action.

Here are the chemicals that are of most concern that are contained in Komen’s “Promise Me” perfume:

  • Galaxolide, a synthetic musk that works as a hormone disruptor and is detected in blood, breast milk, and even newborns.*
  • Toluene, a potent neurotoxicant known widely as one of the toxic trio, has demonstrated a variety of negative health effects and is banned by the International Fragrance Association (IFRA).*

*Source: Breast Cancer Action

Breast Cancer Action coined the term “Pink Washing” to describe the pinkification of products that are actually known to increase the risk of breast cancer or are thought to be linked to an increase in breast cancer. Now it seems that Komen has produced their own pinkwashed product: their “Promise Me” perfume.

I have long thought that pink bottles of Mike’s Hard Lemonade and other alcoholic beverages that go pink for a cure to be hypocritcal at best. Alcohol consumption is known to increase a woman’s risk of breast cancer. But, when ever I have complained about these pink bottles, many take issue with why I would care where the money comes from . . . after all, isn’t it just a good thing to raise money for breast cancer research?

But, do people know how few of their dollars spent on these pinked products actually go to research? Probably not. And, you would think that a product commissioned by Komen would actually serve up more money “for the cure” . . . but, out of the $59.00 purchase price for “Promise Me” less than two dollars goes to research. (For more on where the money DOESN’T go see Cancer Culture Chronicles: “Komen By The Numbers: 2010 And Still No Answers” and Uneasy Pink’s: “Quick Math” and for some more of my own snarkiness: “Pinktober Comes Early”

Breast cancer action is taking Komen on. They have asked Komen to join them in a promise not to engage in pinkwashing and to recall their “Promise Me” perfume.

“We are genuinely shocked to see a breast cancer organization marketing a product containing multiple chemicals categorized as toxic or hazardous” (Breast Cancer Action)

I hope you will join Breast Cancer Action, go to their link and you can use their letter, in asking SGK to do better, to honor their promise. It only takes a moment to do.

Here is my letter . . .

Dear SGK:

I am disgusted with what I believe began with the best of intentions and has now become a giant pink money maker. I am NOT alone in my feelings. There is a movement, a group of women who are educated, strong and angry. We know you hear our voices, but, you have yet to respond. We are waiting, we will not let up.

We feel as though you are profiting over breast cancer. We feel that you really are not racing, or even slowly walking, towards a cure. I went to your OC race this past weekend and I saw the same thing that I have been inundated with ever since my diagnosis – you sell this idea that you are raising money to “CURE” breast cancer and yet you preach early detection as the solution instead. You have even trademarked the words so that no one else can use it and then waste valuable time and resources to sue anyone who uses your “for the cure” language. This makes it seem like you are more concerned about protecting profit motives than actually racing after a cure.

The reality is that even with early detection, women (and men) DIE of breast cancer. You wrap up poster women – take credit for their survival – all in a pink bow and sell this idea that it will all be okay if we just get screened early. Early detection is NOT a cure. Wake up. We have and we are NOT going away.

Facebook is credited to helping Egyptians take to the streets and to revolt.

There is an online movement, a revolution of sorts. I am one of many who are spreading the word. We are all already aware of breast cancer. The NEW AWARENESS that we need is how little money goes to actual research. (I hear that only 19% of the $389 million dollars that Komen raised in 2010 went to research). 19% is NOT enough!

Stop pinkwashing. Promise me this: stop knowingly contributing to the proliferation of products that not only increase the risk of breast cancer, but, also increase the risk of all cancers. We know you can do better. I, personally, will not rest until you do.

An Amazing Weekend . . .

23 Sep
Charaxes brutus natalensis. Pictured in Dar es...

This past weekend I got to go AWOL . . . I attended a retreat for women who have had cancer, called: A Way of Life After Cancer (AWOL). It was an amazing experience. I can’t even really put it into words. But, I will do my best, since I have been asked to share about this experience.

But, I think before I can write about the retreat, to explain why and how it affected me so profoundly, it makes sense to describe how cancer has affected my life. So, a few words about cancer.

I got the news of my diagnosis over the phone. My doctor called me with the results of my biopsy. I had already seen the mammogram with a star like pattern all over my right breast and I was unusually tired . . . so I guess I should not have been so shocked at the news. But, I was . . . in shock.

Your life is never the same after you hear those words. Nothing feels the same again and nothing is the same again. Having said that, it is not all bad, but, it is (at least for me) all different.

I remember so clearly the day that I was diagnosed, the day that my life changed forever. When I think back to that day it is like I am watching a movie of someone else’s life. A friend was with me when I got the call . . .

“I’m so sorry, Lisa”

I was numb, shaking, weak, afraid.

“You will get through this”

Still numb, nothing, hopelessness. Overcome with fear. How would I tell my family, how would I break my parents’ hearts?

“You are strong, you will get through it”

I never felt so weak. Could I even stand?

And then my friend said something that I will never forget as it affected me profoundly:

“Lisa the next year and a half will be the hardest and worst time of your life. But, you will get through it, you will be okay.”

NO. No, it will not be the worst time of my life. I will not allow it to be.

For some reason those words stirred me up, woke me up, I was determined not to allow it to be the worst year and a half of my life – cancer will not take my life from me even if it kills me. No. No. No.

And so began the crazy blur of those early days of a cancer diagnosis . . . there were tests and scans and consults and first and second opinions and research and decisions, lots of decisions, to make. You make your way through it all in a type of fog . . . a cancer induced haze that is like a dream . . . a very, very bad dream. You work your way through it, going from appointment to appointment, to treatment. You learn to research, to prioritize and to lean on people (I leaned on so many). You learn to ask for help, you learn to live a different way and you feel removed from your life, your friends, your family . . . just a bit . . . because you have cancer and thankfully (THANKFULLY) they do not.

There is something that happens to you when you are diagnosed with cancer. You immediately feel alone. No matter how many people come to your aid, no matter how much love surrounds you, there is this loneliness that can take hold of you. I realize now, after this past weekend, where this loneliness comes from and in making this discovery, I feel less of it.

So back to the AWOL retreat. I think the best way to describe it is to say that it began a type of healing I have not felt until now. It is hard to explain. But, in spending time with so many women (amazing, smart, funny, witty, courageous, strong women) who have been through cancer, are going through cancer, I felt the least lonely, the least alone that I have felt post cancer.

I not only made friendships that I will always cherish, I learned that I am not alone in how I feel about things, my body, my fears. It is quite a powerful thing to learn you are not alone in how you feel; that other women experience the same things and manage.

I know that I will never say that I am glad that I had cancer. I can’t imagine ever feeling that way. It took so much from my body, my life, my family and it continues to wreak some havoc today, still. But, I am glad for the people I have met. I am glad for the love and support of my friends and family (truly amazing). The depth of that support and love has been incredible and I am so very grateful for that.

I have worked hard to take back my life, as many pieces of it as possible. Part of taking back my life has meant pretending. Pretending that I feel up to something when I don’t, pretending that I feel well when I don’t, pretending that I am not afraid, pretending that I am not sad, pretending that I am over it.

This weekend I did not have to pretend about anything. It was okay to feel sad, it did not burden anyone. It was okay to talk about the pain I still feel and the worry it causes me, I was understood. And in hearing the stories of other women and their challenges and how they still manage to smile and laugh and live – I have a renewed sense of hope that I desperately needed. The weekend was full of laughter, acceptance, hope and new friends.

Here is a link to “From Crysalis to Wings” and their “A Way of Life After Cancer Retreat. What a wonderful organization. I am so grateful to have been able to go on this retreat. I owe a huge thank you for the amazing volunteers who worked tirelessly to provide such a wonderful experience.

Love and peace,

Lisa

Gratitude

15 Sep

I am overwhelmed and humbled by the responses I have received here and via email (which by the way is: cancerfree2b@gmail.com) to my most recent blog post. Thank you so much. And thank you for sharing this post on facebook and twitter and via email. It has enabled me to connect with many new friends online, I am so grateful.

I want to thank you all for your support and for teaching me so much this past week.

I am going to be offline for the weekend ( as of this Friday morning) while I participate in a women’s retreat . . . it is called AWOL: A Way of Life After Cancer. I feel very fortunate to be able to attend and to be sponsored for this retreat (cancer is very expensive, so I am extremely appreciative of the scholarship I received to attend this retreat).

Here is a fabulous post by Uneasy Pink about her upcoming participation in Susan G. Komen’s Race for the Cure (TM). It is a must read.

Thank you again for your thoughtful comments and messages!

All the best in health,

Lisa

Pinktober comes early . . . ugh

13 Sep

This past weekend while I was reading the paper I decided to take a look through the Sunday paper’s coupons. (By the way, there is almost never anything that isn’t processed, full of chemicals or full of high fructose corn syrup in the coupon items).

Anyway, to my delight (NOT) I found this (see below) the first of the Pinktober ads that we will soon be inundated with, everywhere, during breast cancer awareness month or what used to be known as OCTOBER.

I already feel more hopeful . . .

Wee! Apparently, just like Christmas, retailers make sure it starts earlier and earlier each year. So now Pinktober – the month of breast cancer “awareness” hell – apparently begins a month early. Why should I be surprised. Costco is already selling Christmas items. And why not let them get a leg up on Pinktober? After all, they are curing cancer right? Oh, wait, I meant to say they are “re-branding” . . . isn’t that what Susan G. Komen calls it when they solicit corporations to pay to be pink?

We have all seen it: Pink buckets of Kentucky Fried Chicken, pink Hamburger Helper, pink cosmetics (that often include carcinogenic chemicals), pink, pink, pink. So where does your money go when you “go pink”? Well, here is where it goes if it is going to Susan G. Komen (only 19% of it goes towards breast cancer research, this from a “non-profit” that sues little non-profits for the use of its trademarked slogan: “For the Cure” (TM)). See chart below:

The above pie chart was created by Cancer Culture Chronicles. Her post “Komen By The Numbers: 2010 And Still No Answers” is a major eye opener on Komen, their expenditures and just how it is that Komen has a “four star rating”. And for a breakdown of the math behind where your money goes, see these two posts by Uneasy Pink: here, where she points out that only “two percent of all research dollars go to metastatic cancer research” Uneasy Pink goes on to remind us that metastatic breast cancer is the kind of breast cancer that kills. So what are we racing for anyway? Certainly not a cure. Certainly not if only 2% of the money goes to research for metastatic breast cancer. And check out some more math from Uneasy Pink in this post where she calculates that out of the $59.00 purchase price for a bottle of Komen’s “Promise Me” perfume only a stinking $1.51 of the proceeds go to research. PUHleez!

Perhaps one of the most outrageous (to me) pink for profit items I have seen are the pink alcoholic beverages.

Their Campaign: "Good On So Many Levels" See? We can all feel good when we buy these products even it is a known fact that alcohol consumption increases a woman's risk of breast cancer . . .but, whatever, right?

To be fair, these companies do make contributions to breast cancer research organizations. But, don’t think that it doesn’t increase their sales – there is real profit in going pink. And if you don’t believe the power of pink in selling a product, here is what one customer of Mike’s Hard Lemonade had to say:

“I went to pick up some of the Mike’s Hard Berry, I was told it was temporarily replaced for Pink Lemonade, due to Breast Cancer Awareness . . . I noticed the proceeds were also going to Breast Cancer Awareness Research, so I went out and bought a whole case.” (Emphasis added). For more on Mike’s Pink Hard Lemonade’s “Good On So Many Levels” (blech) campaign, and more customer comments where they claim they are purchasing more because of the good it is doing, click  here:  (By the way, what is “breast cancer awareness research“? I think the buyer may have meant breast cancer research . . . who knows . . . who cares – it sells).

I do not like Pinktober. So what is my problem with breast cancer awareness month? Why does it bother me, you might ask? Isn’t it good to increase awareness? Isn’t it good to raise money for research? Sure, but, when so little actually goes to a cure and when so many products in the pink bandwagon are actually dangerous and increase the risk of breast cancer and other cancers, I feel it is at best disingenuous.

But most of all, I do not look forward to being asked to donate a dollar “for the cure” every time I go into a grocery store checkout (when I know that only pennies of that dollar ever go to research and far less goes to research for metastatic breast cancer – remember – the kind that kills). I do not look forward to the wall of pink crap food at the entrance of and through every aisle every grocery store (I have yet to find a remotely healthy product that has gone pink . . . maybe this year I will find one).

I do not look forward to the false hope that pink sells.

Komen's "Promise Me" Perfume (or what I like to call "Fleur de Fraud"). Cost of this perfume: $59.00. Actual amount of purchase price that goes towards cancer research: $1.51 (Thank you to Uneasy Pink for doing the math).

And I especially I do not look forward to my disease, my suffering, my Aunt’s suffering and her ultimate death from breast cancer, and the suffering of so many other women and men being hijacked for profit.

I do not look forward to my friends and loved ones – who often have felt so helpless in the face of my illness – manipulated into purchasing items that are pink, tricked into believing it is doing me some good or that it will help some woman out there, when in fact these pink purchases often deliver very little to research. And some, deliver none – their promise in exchange for your money? To increase awareness. We need to move past awareness and sink our dollars (not just pennies of our dollars) into research.

And what about the walks and races to raise money for breast cancer? These are often incredibly uplifting events, providing a great deal of support and hope to both cancer patients, survivors and their families and friends. So clearly their IS some value beyond the irritatingly low 19% that goes towards research. Still, in my opinion, not enough. So many show up at these races to do good. I have walked in the past. My friends have walked on my behalf and their doing so has made me feel stronger. Chemobabe wrote a great post about this and dealt with the question of how we can be critical of an organization that makes these experiences (their walks) possible.

And for more reading about Komen try Komenwatch and read here, a blog post by one of my online friends Nancy of Nancy’s Point where she asks SGK for an apology. I agree with you Nancy, I think we all deserve one.

Okay, so you get it by now, Lisa (that’d be me) is not a fan of pink. And now, hopefully, you will have an understanding of why. I am hopeful that SGK (and others who are taking money in the name of breast cancer research) will find the surge of criticism on the web to be constructive and will prove to us all that they can do better than 19%, will do better and will honor their mission (albeit trademarked) to race for a cure (Registered Trademark, Susan G. Komen).

And, just so you know, I have worn my share of pink . . . I wore a pink t-shirt to many chemo and Herceptin rounds. But, I wore that shirt because it had, in very bold, large, black letters the word “FIERCE”.

My Mom bought me this "fierce" t-shirt, it was my "F" word for cancer treatment.

I loved that shirt. It is faded now, having been through the wash many times and worn many times . . . to chemo, to the gym and sometimes to bed. It was as if wearing that word across my chest (and for a good part of the year . . . across no chest) could influence the battle beneath. Fierce. I could make myself fierce even if I did not feel that way, I could make my cells within my body wage the war I needed waged and conquer the cancer.

So, I wore that shirt in spite of it being pink. But, that pink shirt didn’t save me. Research saved me – if I am even saved (I am thankfully, gratefully NED: “no evidence of disease”). Research that lead to the development of Herceptin made it possible for me to still be here. Women who gave their last days of an aggressive cancer to participate in early trials of Herceptin, they saved my life or at the very least, prolonged it.

Awareness did not prevent my cancer. Awareness is not a cure. And, we still, after so many years of pink branding, really do need to race towards research to cure all cancers.

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