Tag Archives: National Breast Cancer Awareness Month

When Pigs Fly: More Thoughts on Komen . . .

24 Jan

This year I could not have been more grateful for the month of October (aka: Pinktober) to end. Next year, my plan for getting through Pinktober (and SGK’s pink peddling and pushing) is to simply do all of my grocery shopping online and at local farmer’s markets. I want to limit my exposure to the sea of pink. And, I don’t want to be asked again at a grocery store checkout stand if I want to donate to Susan G. Komen “Race for the Cure” [sic] (And by the way, I mean “SIC” as a double entendre).

Just one of the many pink products sold all year long: a Komen Pig Note Pad. But, take a closer look below . . .

When you’ve had breast cancer you have a whole different insight into the world of pink ribbons, pink products, 5ks and three day walks and so on that are all supposed to raise money for a cure and to help women (and men) with breast cancer. I used to think that SGK was using their money to benefit women with breast cancer and to help find a cure. But, I learned quickly, the hard way, that SGK will not be there for you if you need their help. See my earlier post on how SGK abandons breast cancer patients and leaves us in the cold. (I personally called SGK’s advertised phone number that breast cancer patients are invited to call for financial help over 100 times) and not once did I ever reach a live person, not even a voice mail where I could leave a message – in my opinion – what they did – what they did NOT do – while claiming that they would do something – was fraud).

I know many people who love the pink ribbons and love the Susan G. Komen Foundation and their pink rose ceremonies and pink balloons and 5k walks and  – sadly – they think that buying pink will help eliminate breast cancer . . . one day. They think that buying pink will somehow help someone like me.

So why am I talking about this in January now? I was out picking up some office supplies at my local Staples store and did a double take when I saw all of the Christmas displays and seasonal products for the holidays replaced with pink, pink, pink. Seriously? Is it necessary for this to be a 12 month thing now?

I decided to take a stroll throughout the store and take in all of the pink, just curious about whose name is on it and where this pink-breast-cancer-curing-money is really going. Nearly every product I saw at Staples that was pinked was done so in the name of the Susan G. Komen Foundation. Not much of a surprise really.

Maybe when pigs fly we'll have a cure . . . until then, by all means, let's keep "benefitting" SGK!

But, here is what really surprised me . . . they don’t even claim any more to be giving the money to “the cure”. Instead this is what the Susan G. Komen pinked products I found now say: “benefitting” The Susan G. Komen Foundation . . . at least they are being honest about it now . . . where the money from your purchase goes . . . “to benefit The Susan G. Komen Foudation”.

It certainly did not go to benefit me or anyone I know who has had, survived or died of breast cancer. I love this complete lack of accountability (not). I guess it is just par for the course. The sad thing is that people buy this stuff thinking, believing that it will actually lead to a cure . . . yeah, maybe when pigs fly . . .

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Pinktober Blues . . .

29 Oct
Cover of "Promise Me: How a Sister's Love...

So Nancy is calling this a "global movement" to "end breast cancer"? I don't think 19% to research is going to do it. I have no problem with money going to education or even to awareness, but, stop claiming you are "ending breast cancer", stop claiming you are "racing for a cure" because at your snail pace of 19% you are NOT.

This month has been rough in many ways. Partly it is because it is Pinktober. And partly it is because I just have not felt well. I have had a headache for 6 weeks now. That is nothing compared to what some of my friends have to endure. So, I feel weird even mentioning it. But, with those headaches I have the ever present fear of a recurrence. That is the lot for those of us who are lucky enough to be NED (no evidence of disease) . . . aches and pains take on a whole new possibility.

My headaches are getting under control a bit and I have actually had some breaks from it as well as just a lower intensity. So that is definitely an improvement.

I wonder though if my headaches are from Pinktober. I am serious. I really think it is . . . if not Pinktober, then Komen.

You see, it is difficult to be surrounded in a sea of pink, to be constantly asked if you want to make a donation “to breast cancer” whenever you are in a check out stand at a grocery store. It is difficult when you know that all of this pink hoopla results in very little of the purchase price going towards research, towards a cure. And, sometimes none of it goes to research, sometimes it simply goes to “awareness”. Well, that means it goes towards pink packaging.

I AM truly suffering from pink fatigue. I have been angry and depressed about it.

Please understand that if I thought any of this sea of pink would improve survival rates for breast cancer I would feel very differently about it. But, in all the years that Komen has been taking money in the name of “racing for a cure” the survival rates for breast cancer are largely unchanged. Those of us who are diagnosed with aggressive forms of breast cancer (even when detected early) do not have a great prognosis of long term survival. Overall survival rates are pretty much the same as twenty years ago. Early detection is NOT a cure.

So I am angry. I am angry that Komen, an organization whose mission is to “end breast cancer forever” only spends about 19% of the nearly 400 million they raise each year on research.

And, this year Komen has sunk to a new low with “Promise Me”, a perfume commissioned by Susan G. Komen for the Cure. Komen’s Promise Me contains chemicals not listed in the ingredients that are regulated as toxic and hazardous. But, because the FDA does not regulate perfume, there is no requirement to list these chemicals on the label. And, of the approximately $60 purchase price, only $1.31 goes to research . . . this after subjecting anyone who wears it to chemicals that are known to cause disease. Pretty sick, right?

So, when I stand in line at the grocery store and the clerk innocently asks me if I want to donate “for the cure” I literally feel queasy. For some reason I see myself lying on a table going through the surgery I had to remove both of my breasts . . . I actually picture that in my head. I donated those parts of my body for breast cancer, for survival, so that I could have the chance to still be here today. That is what I think about when I am asked to donate for “the cure”.

I am grateful to be alive. I am grateful for the RESEARCH that lead to Herceptin . . . without that drug I would surely be dead. I am so, incredibly grateful.

But, we can have more than Herceptin, we could have a cure. So, while I am grateful I am also very angry. Angry that an organization like Komen who raises the lion’s share of money in the name of a cure only donates 19% of that money to research.

I am angry that good people, with the best of intentions are taken advantage of, are lead to believe that they are really making a difference when they buy something that has a Komen ribbon on it.

I am angry.

I am sad that I have friends who will not survive cancer because we are wasting our time with pink hoopla instead of real money for real cures. And I fear that I too will succumb one day to this disease . . . that there will not be a cure in time.

Some of you know that I play standup bass and sing. I am in a small blues band. Tonight I was asked to fill in for a bass player in another band because that bass player’s mother passed away today . . . from cancer.

I immediately agreed to fill in. I’ve never sat in with this band before, but, hopefully I will be able to keep up with them.

I wonder if some day someone will be calling for a bass player to fill in for me . . .

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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.

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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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I am pinkified . . .

29 Oct

I just realized that all of this pink has caused me to be emotionally nauseated. Not actually physically needing to throw up . . . but, just sick somehow . . . like I wanted to throw up in my head . . . (now you’re probably thinking I am really looney). I have decided that I kind of despise October. October used to be candy corn and orange and black and pumpkins and bags of individually wrapped candies . . . it used to simply be Autumn.

Now, it is just pink.

It has taken me a while to realize what has been making me feel so down these past few weeks. The sea of pink. The “would you like to donate to breast cancer research” every time I am at the check out stand of the grocery store. The displays of pinkified products practically blocking the entrance to my local grocery store. (By the way, this is all junk food mind you . . . not a single food item with pink on it that doesn’t contain something nasty for you in it – but, that deserves its own blog post).

This putrid, every-where-pinkification just doesn’t work for me at all. I get it, I know it is important that we all are aware of breast cancer. But, trust me . . . I AM aware of it and there is no doubt that everyone I know is also painfully aware of it too.

I have had my own awareness, thank you. My family and friends have all had this awareness too. I have not written in a little while. Mostly because I had nothing to say, well . . . nothing I wanted to share. I have been angry, I have been sad, I have cried a lot in the past couple of weeks . . . something I thought I was done doing. Apparently not.

Today I suddenly realized what I think is at the root of my recent emotional rollercoaster . . . it is all of this awful pink. It is just everywhere . . . I cannot escape. I am forced to think about it . . . about breast cancer . . . constantly.

I shop almost everyday . . . I do this because I try to eat fresh food and so most days I am running up to the grocery store (it is just a few blocks from my home). I think the grocery store is the worst place to go during October. An online friend, and fellow HER2+ breast cancer patient, has been posting photos of pink products on her facebook page and has encouraged others to do so too (you can see her blog here: http://www.chemobabe.com).

It runs the gamut from breast-cancer-awareness duraflame logs and household cleaning products to pinkified hamburger helper. Duraflame logs are not healthy to burn in your home . . . really. And, don’t even get me started with the chemicals in a box of hamburger helper.

Thanks, but, this isn't the kind of help I need

At first these pinkified products were funny, entertaining. It became a game to find the most bizarre pinkification. I even started taking pictures of pink products when I was at the grocery store. But, that was then . . .

Sometimes all of this pink just feels like salt on my wounds

Now? Well, all of this “awareness” has given me a month long head and stomach ache. I don’t want to live and breathe breast cancer. I am still recovering from my most recent surgery. I am still battling this disease, and the reality of an uncertain future, in my head. I am still facing frequent doctor appointments, tests, blood work . . . I am booked with medical stuff well into December already. And, there seems to be no end in sight. But, it is what it is. I deal with it and I hope and believe that one day I will go for months without doctor visits, needles, pokes, prods and scans . . . I dream of having years at a time free from all of these constant physical reminders of what I have been through.

And I know that I will never really be truly free of it . . . not unless and until I forget what I used to look and feel like – that scar free, pre-cancer self . . . not unless or until I regain enough of the old Lisa that I don’t miss her anymore. You see, I simply do not need all of this pink. I AM aware.

Fortunately, Pinktober is almost over. I look forward to saying goodbye to this pernicious pinkification . . . at least for another year.

Love and peace,

Lisa

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Pinktober – Breast Cancer Awareness Month . . .

18 Sep
In Finland the October the 3th is the day of s...

Maybe I should wear this to the Race for the Cure 😉

Breast Cancer Awareness Month

Pink

It is nearly Pinktober. October is breast cancer awareness month. I will be recuperating from surgery during the month of October, so I will have less exposure to pink 🙂 You start to resent the color pink after a while . . . especially since it is virtually everywhere. Pink. How did that become the color of breast cancer? Pink flesh? Pink disease? Pink, pink, pink, pink, pink.

Well, I did wear 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”. 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. I will be at the race for the cure next Sunday. (I say “at” now because of recent complications that make it pretty difficult to get around – my right side is pretty messed up – I will explain infra).

There will be lots and lots of pink there. I am going with a group of girlfriends who are all going to be wearing pink. I kind of want to wear chartreuse green to the event. Seriously, from head to toe . . . chartreuse. Why not? I would get some funny stares. It is funny, women with breast cancer either love it or hate it (at least that is what I see from my view) . . . love or hate pink, that is.

So about my not being able to walk in the Race for the Cure . . . today I was told to be still for the rest of the weekend. I mentioned that I have been having some pain on my right side. I thought that maybe it was lymphedema. But, now after speaking with a nurse who specializes in lymphedema and then a surgeon up at Cedars Sinai, it seems clear that the pain is probably not from lymphedema. So, that is a good thing as I really want to get through this cancer nonsense without having to contend with lymphedema . . . at least if it is possible for me to do so.

It appears instead that the pain I am experiencing is likely due to my pectoral muscle tearing. The expander is placed underneath the pectoral muscle (ultimately an implant will replace the expander . . . in addition, I will have muscle and skin brought to the area as well). The surgeon explained to me how a tear can happen and that it would cause me to have pain using my arm since the pectoral muscle is connected to the shoulder . . . any movement of my arm then causes that torn area to hurt. Anyway, she wants to see me on Monday. My surgeon is out of town (I am scheduled to see him for my pre-op appointment on Thursday of next week). However, his associate does not want me to wait that long. She gave me instructions to be still for the rest of the weekend to see if I can get through the next couple of days until I can get into see her on Monday. She put me on an antibiotic as a precaution (said there is too much at stake to take any chances right now). I appreciate her attitude and concern. It is a little disturbing. I had no idea what was going on . . . I should have called her a few days ago, but, I just thought it would get better and instead, it got worse.

She wants me to call her if the pain increases over the weekend and if it does she will have me come into see her . . . presumably to take out more fluid from the expander so as to alleviate the pressure there. But, I am not sure really. And, there is also the possibility that they will see me on Monday and decide surgery needs to happen earlier. God, I hope not. But, that is not really something I am going to worry about. I just really, really want Dr. Sherman to do the surgery. So I need to hang in there until he returns. So, no moving around this weekend at all. Of course my plans of doing laundry this weekend are completely out of the question. Oh well.

Keep me in your prayers, I greatly appreciate it. I think things will be fine. I am glad to know that this is not likely a lymphedema issue. Although, hopefully the muscle tear is not something that will be a problem. I think it will be fine. Mostly, I think she is worried about preventing an infection. I am very glad that she is so pro-active and concerned. And, she took a lot of time with me on the phone. She asked a lot of questions and then seemed to be able to discern what was going on, explaining it in a lot of detail. I liked that very much. It is such a relief to have a great surgical team. I am so happy about the switch to Cedars Sinai.

Love and peace,

Lisa

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