Tag Archives: breast cancer awareness

Pinktober: One Week Down, Three To Go.

6 Oct

It has been a crazy several months (more on that in another post) and I have wanted to write here on many occasions. But, each time, words seemed to fail me. I’ve really wondered what I could possibly add to the conversation about breast cancer or survivorship given that there are so many amazing voices out there doing it every day. And every time I think I am going to write, I don’t even know where to start. I feel like I have said pretty much what I want to say and don’t really want to become a broken record. Nothing is really new, right?

And, I guess that is the problem: nothing is really new.

We still have pink washing, breast cancer awareness month and very little of the money raised in the name of a cure going to actual research and . . . 

still, 30% of ALL women who are diagnosed with breast cancer will become metastatic – as in having an incurable disease, as in they will die from breast cancer.

Cancer sucks. Period.

One week down, three to go. For all of what I love about October (baseball playoffs – especially if my Angels are in it, my empty, beautiful beach, sunsets over Catalina and Halloween) I also dread October. It is pinkified and Komenified for the entire month. Hate that. There is pink everything, everywhere. Turn on the your t.v. and you’ll see it in commercials, the back drop of newscasts, the NFL, you name it, everyone and everything is pink.

Not going to drink this . . .

How is drinking pink alcohol fighting against breast cancer?

There is ridiculous pink branding and pink washing everywhere (Mike’s hard lemonade usually goes pink along with Campbell’s Soup, and so, so many other companies).  Walk into any grocery store, it is as prominent as Halloween, Thanksgiving and Christmas . . . it is like Nancy Brinker started her own damn pink holiday and it lasts a full month long. I realize it is not all Komen, but it seems to be mostly them and if you have read my blog much, well then you know how I feel about Komen. I will never believe that an organization that collected 389 million dollars in the name of a cure (in 2010), but only put 14% of that 389 million towards research, could ever become an organization that I could support or trust. For more on that see: “Komen By The Numbers: 2010 And Still No Answers” and how Komen participated in pinkwashing by pedaling their own pink product, here.

Here is just one of many examples of something that is pink-washed – Essie’s “Breast Cancer Awareness” nail polish – by the way, nail polish usually contains toluene, formaldehyde and dibutyl phthalate (aka: dpa) – all known carcinogens – but who wants to be aware of that . . .

And how about these clever names for breast-cancer-awareness, possibly-cancer-causing-nail-polish: “Pink Happy” and “Pinking About You” and my absolute least favorite: “I Pink I Can” . . . really??!!!

Screen Shot 2014-10-06 at 2.11.36 PM

 

In fairness to Essie – since they do not disclose a complete list of their ingredients online –  I can’t be sure if they use the “toxic three” in their nail polish. But, most nail polish sold in the United States contains all three.  And all three are known carcinogens. But, let’s not go too crazy with all this awareness . . .

The one ingredient Essie does list online is: “dimethicone” which is a “smoothing silicone” substance that can accumulate in the liver and lymph nodes and appears to be linked to the “growth of tumors” (“Cancer Alert: Skin Care Ingredients to Avoid”, by Dr. Edward Group). Sounds awesome, doesn’t it?

That, my friends, is pink washing – selling a product that is known to contain chemicals that cause or contribute to breast cancer in the name of breast cancer awareness.

One of the things I dislike the most is that for all of this “awareness” and supposed racing for the cure, we are not closer to a cure. 40,000 women will die of metastatic breast cancer this year. Not a good statistic at all. I have lost many friends, including my aunt, to breast cancer. I will see more friends die. I might die of it too

We need research. We need to learn what causes breast cancer. We need to educate. We need more RESEARCH. We really don’t need: pink portapotties, pink golf carts or Mike’s Hard “pink” Lemonade or make-me-aware-pink-potentially-cancer-causing-nail-polish with cute (sic) names. We don’t need more awareness.

I dislike the pink onslaught and pink hoopla because it celebrates something that truly is not happening. We aren’t curing breast cancer with pink balloons and pink products. This “awareness” isn’t getting us anywhere.  Sometimes I wonder if we are even treading water. My friends, your friends, are still getting diagnosed, still going through chemo, still dying, period. It is just so damn tiring. Why don’t we just all admit it – this cure thing is a fiction at this point. We are no closer to a cure now than we were when my Aunt died of metastatic  breast cancer in 1994. But, one thing is for sure – the pink profiteers are profiting big time – all in the name of breast cancer awareness.

For me, my personal breast cancer awareness is about the daily physical and emotional ramifications I still deal with nearly six years out. For me, breast cancer awareness is about my friends who have died, who will die and who will be diagnosed. For me breast cancer awareness is about how difficult it still is sometimes to simply live my life. For me breast cancer awareness is the guilt I feel in saying that very thing – that it is “difficult” being a “survivor.” After all, don’t I realize how lucky I am to be alive six years out? Of course I do. But, knowing how amazingly lucky I am does not mean that I don’t also feel like crap some or even a lot of the time. Pain and lymphedema are frequent visitors post cancer treatment.

On the upside, I’ve learned to shrug off pains now without too much thought of it being a recurrence. That is some real progress. But, I continue to see my friends get diagnosed. Many friends have had recurrences. And so for me, not thinking about a recurrence is something I have to actively work at, especially when I am seemingly surrounded by all of this pink crap during October.

So for the rest of this month of breast cancer awareness I am going to try to be less aware of the pink and try to see the orange and black halloween decorations and the fall colors displayed in the grocery stores (let’s face it, living in Southern California, that is about as close as I get to seeing “fall colors”) and try not to see too much of the sea of pink. And, I will try not to retort back with something snarky to the well meaning grocery store clerks when they ask me if I want to “donate to breast cancer” (whatever the %@&# that means). I have always been tempted to respond with something like this: “No thank you, I’ve already donated my breasts to breast cancer. I think that is enough” . . .

Sigh.

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The Re-Branding of the Susan G. Komen Foundation

1 Oct

It was necessary – given the heat and fallout that SGK has deservedly experienced the past couple of years – that they re-brand themselves. And, they are definitely good at branding. But: “Passionately Pink for the Cure” . . . really? (Oh, and this has been trademarked – so don’t think you can use it for a fundraiser without getting sued).

I just discovered this re-branding this morning when I walked into my office building and saw this:

balloons pink komen

The lobby of my office building has gone pink

This wasn’t really a big surprise to me. But, then I saw all of these signs for: pasionatelypink.org and I thought, well who are they? Who is this new breast cancer non-profit? Hmmm . . .

And then I saw this:

passionately puke

Passionately Pink for the Cure is a new registered trademark of SGK – and their new brand. I guess they have finally conceded that they are not racing for anything.

SGK understandably needed a face lift after: a) doing some very stupid things like: pulling the plug on some women’s healthcare last year (you know, just the women who are poor, by choosing to no longer provide money to Planned Parenthood – where many women, in particular poor women, receive cancer screening),  and after b) being outed by many sources (including Reuters and our dear Rachel in 2010 in her widely seen post on “2010 Komen by the Numbers” – and for those of you who did not know, Rachel, among other things she was a cpa, so she did the math on SGK’s public financials) that less than 15% of the millions and millions of dollars SGK has raised in the name of a cure go towards research. Just to be clear, Rachel’s numbers for 2010 were 19%. When Rachel died of metastatic breast cancer in 2011, her post made the rounds again and Reuters did their own math and came up with 14%. Either way – not much.

In fairness, after tremendous public outcry, SGK returned the money to Planned Parenthood (essentially they were forced into doing the right thing).

And, then of course there was Nancy Brinker’s “Promise Me” Perfume fiasco. In case you didn’t know or don’t remember (but who could forget), Nancy Brinker launched a perfume called Promise Me (which is also the name of her book that was released about the same time). Of course the proceeds of this carcinogen containing perfume (yes, tests were run and the “Promise Me” perfume was found to contain chemicals banned in Europe for being known carcinogens) went towards breast cancer. About how much of it went to breast cancer research? About a $1.64 of the nearly $70.00 purchase price went towards a cure. The perfume was put on the shelves and sold. And, once it was brought to Nancy’s attention that her perfume contained harmful chemicals, she refused to take it off the shelves. 

Many of us began demanding that Nancy Brinker “step down”. She agreed to step down – but after agreeing to – she kinda well, really didn’t step down at first. And in fact, she decided to give herself a raise, upping her already enormous salary to $624,000.00 a year. There was fallout from this too (her giving herself a raise amidst demands she step down).

This past year some of the fallout received by SGK has resulted in some of their “Races for the Cure” events getting cancelled.

So it all makes sense that they would rebrand themselves – and it certainly makes sense that they would drop the “race for the cure” line from their brand because lets face it – this has been no race. Giving less than 20% of nearly 400 million dollars raised in just one year to breast cancer research is not a race. And, metastatic breast cancer – the kind that actually kills – has historically only received about 2%.

No, that is not a race. That is not even a slow walk.

So, I am one of many bloggers out there who have criticized SGK. I would like to think that our voices have been heard. They have certainly responded when we yelled loud enough. And, Nancy even referred to us a few years back as “grumblers”. Well, eventually, little by little some notice is being taken . . . I think. But, I am quite suspicious (given the numbers historically and given the fact that they pretty much seem to only do the right thing when they are forced to: when not doing the right thing puts their whole existence in jeopardy). So, yeah, I am suspicious.

Incidentally, their new domain: http://www.passionatelypink.org redirects right back to them. Nicely done!

I personally have had people from Susan G. Komen’s marketing department contact me to try to convince me that Komen is in fact a good organization – or really, I think they contacted me just to get me to shut up. (If you are interested in reading more about that, see this post: Komen, Please Leave Me Alone).

So, at least SGK is no longer claiming to be “racing for a cure”. Now they are just “passionately pink”. Who doesn’t love that?

Meanwhile, excuse me while I passionately puke . . .

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Pinktober is almost over . . .

30 Oct

I haven’t written a blog post in a while. I set out to write one today and saw that I had a comment from Jenn (see below) on an old blog post entitled: Komen Please Leave Me Alone

Here is Jen’s comment – I just had to share (you will find my response to Jen below her comment).

Jenn
Submitted on 2012/10/09 at 8:18 PM

Truly sorry that you had an awful experience with NY Komen. That never should have happened – and wouldn’t happen at many other affiliates. I am confused though. Do you want the money to go to patient assistance or to research? Yes Komen ONLY gives 20-25% to research because the other 75% is granted out to the local communities. And Komen gives more to breast cancer research than any other group outside of the government. As for not getting finanicial assistance to help you that depends on the grants in the area. If no one applies for a grant to do this then what is Komen supposed to do? I agree “For the Cure” is misleading but who knew 25 years ago how complex breast cancer was. We all hoped for a quick and easy cure – now we know with science that it will take more. As for the emails from Komen – I suggest you use the unsubscribe button at the bottom of the email and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on…
Here is my reply to Jen:
Panera Bread

Panera Bread is supporting Dr. Susan Love’s Army of Women – Good for them! (Photo credit: Wikipedia)

Submitted on 2012/10/30 at 10:21 AM | In reply to Jenn.

Hello Jen,
I think you are the one that doesn’t know what you are talking about. First of all, Komen does NOT give “20-25% to research”. Your numbers are wrong. To answer your question: “Do you want the money to go to patient assistance or to research?” here is my answer: I want Komen to stop being a fraud. I want Komen to stop claiming to be “for a cure” when they are not – no organization that puts more than 80% of raised funds to things OTHER than research can claim that they are “for a cure” for cancer. That just doesn’t add up. I want Komen to stop misleading all of us. And, I want Komen to stop claiming that they help patients with their treatment costs when in fact you can’t ever get anyone to call them back – ever.

You need to read more carefully – Komen’s marketing people are emailing me directly – they use the email contact through this blog to contact me. It is not the email list that bothers me – you can unsubscribe from that once you find out that all Komen wants is your money. The emails from Komen that I am referring to are the ones that they send to me directly through this blog – from their PR and Media people trying to get me to stop telling the truth about Komen. That is despicable. They never answered a single phone call, never returned answered or returned any calls when I called their patient support line over 100 times – but when I complain about that publicly and call Komen out for who they are – I get email after email from their PR and Media people. Just a little disingenuous don’t you think?

You don’t know what you are talking about. I haven’t found a single chapter of Komen that has anyone that will take your call or return your call from “patient assistance” – if you ask me – it simply does not exist.

Anyway, the NFL and others have figured out that Komen is NOT worthy of support. Haven’t you noticed that with many large organizations Komen has been replaced (the NFL supports The American Cancer Society now – they dumped Komen this year). Many other organizations have followed suit. Now when I see a pink ribbon on a cup at Panera Bread I smile because I know that the money is going to something worthwhile – Dr. Susan Love’s Army of Women.

I am thrilled to see that Komen’s stronghold is starting to diminish. I was one of several people that asked for Nancy Brinker to step down. I know she is still there – but she has been rightfully shamed.

I am glad that you agree that “For the Cure” is misleading. Komen is misleading and they only respond when their is huge public outcry. It used to be when I criticized Komen that people would take offense (I am in Orange County where Komen boasts one of its largest chapters) but, now times have changed. Most people I talk to now are on to Komen. No one likes it when they hear that according to Reuters only 14% of the money Komen raised went to research. In fact it is making people pretty angry. It is nice to see that the climate here in Orange County has changed. It is making room for organizations that really do help people get funds. Komen is losing ground and I would like to think that I have been a part of that – that is awareness – making friends and family and blog readers aware of what Komen is really about.

Your last sentence: “unsubscribe . . . and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on” is priceless. YOU clearly don’t know what “really” goes on – what really goes on is that Komen only donated 14% of the money they raised in 2011 to research. You can claim all you want that Komen donates more money to research than any other organization but the truth is that they pocket the money and dump it in to salaries and “awareness” and “education” (whatever that is). People are dying. The fact that Komen only used 14% of the funds that good hearted peopled donated “for a cure” to actual research is despicable. They have taken the lion’s share of the money raised for breast cancer research, and instead of putting it towards research, that money goes to six figure salaries, pink-porta-potties, pink golf carts and failing races for the cure.

‘nough said.

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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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