Tag Archives: race for the cure

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” . . .


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 . . .

Komen Koolaid . . .

11 Mar

So, Julie of Orange County Komen sent me an email in response to my email in response to her email in response to my blog post: Komen Please Leave Me Alone

Here is Julie’s/Komen’s response to me (first, you may want to read the post below, from Friday):

“Hi Lisa,

I was not the person “chosen” to respond to you. In my position, it is my responsibility to be in the know about what is being said about our organization; your blog past came to me in an alert as did the post you shared with everyone today. My concern was not just to remove you from our list (however it is also my responsibility, along with one other person here to make sure people who do not wish to receive our information are removed from our list), but to reach out to you as a genuine human being, but as someone who can understand the frustration of trying to get help.

Again, I’m very sorry for the response you got from our organization in 2009. I was not here at the time and like I said, just a person trying to do what they can now. Tell me how I can help and I’m happy to do what I can.

 My contact info is below:

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

3191-A Airport Loop Drive

Costa Mesa, CA 92626

T: 714.957.9157 Ext. 30 | F: 714-619-2678

Our Vision: A World Without Breast Cancer



First of all, I love the “Best Science, Boldest Community, Biggest Impact. WE ARE THE CURE”(sic)

English: Mahindra 6030 Turbo tractor in downto...

I wonder how many women rushed out to get a mammogram after seeing this pink tractor . . . am I the only one who thinks pink porta-potties, tractors, golf carts, etc. in the name of "awareness" are a waste of money? Of course i am not. Sigh.

So there you have it. NO ONE from financial assistance can bother to get in touch with me, to answer my calls, to email me back, etc. But, it is apparently Julie’s “responsibility to be in the know about what is being said about our (komen) organization” and her other job is apparently “along with one other person” to make sure they remove me from their email list. Wow. Now that seems like a great use of “race for the cure” (TM – wouldn’t want SGK to sue me) dollars, doesn’t it?

Okay, so, giving Julie the benefit of the doubt here – she says she was not “chosen” by Komen to contact me and was instead contacting me as a “a genuine human being, but (sic) as someone who can understand the frustration of trying to get help” (her words, not really sure about the grammar here, but, I think she is simply trying to say that she cares).

Okay, well then DO something. FIX what is clearly BROKEN. Komen claims to provide financial assistance to breast cancer patients, provides a number for breast cancer patients to call – but, NO ONE ANSWERS the phone number!!! HELLO???

I am sorry Julie, but, I am unimpressed with your response. And as far as your asking me what you can do to help, I think I have made it pretty clear in my prior email to you. And, in fact, I asked you what YOU could do to help me NOW (since you said that you wished Komen could help me now; wished Komen could somehow “rectify the situation”).

And, still you reply with – let me know how I can help you? I find this disingenuous. Your organization exhausts me. It is smoke and mirrors and a bunch (in my experience) of getting the run around. I asked YOU how you could help me. I told you what my needs at this time are . . . and I got the above reply. Do I expect Komen to jump in and pay all of my bills? No, but, if you truly care, then why is there no interest on your part to at least look into the broken phone number, the fact that there is no form on your website or email for cancer patients to contact you for financial assistance – and yet your organization brags about providing financial assistance to breast cancer patients in need. Please understand this: your organization invited me to seek financial assistance through Komen’s financial assistance program. I got no response ever. I called over 100 times. My story is NOT unique. I have heard from many women who were treated the same way.

Instead, I feel you have just sent me a defensive reply about how you were not employed by Komen at the time I originally sought help. So what? You work for them now. I realize this may all be out of your job description – but, the very fact that this may be the case, shows how broken Komen has become.

But truly, this is my favorite quote from Julie’s email:

“Again, I’m very sorry for the response you got from our organization in 2009″

Response? Julie, I did NOT GET A RESPONSE IN 2009, or in 2010, or in 2011.

I told you before that I was not angry with you (in my previous email). But, I have to say that now, I am a little angry with you. I don’t like the spin, I don’t like the fact that I am hearing from someone from marketing and PR instead of someone who is in a position to address my experience.

I think you have simply drunk from the Komen KoolAid.

If you truly want to help me, truly want to make a difference in some breast cancer patient’s life, then work on fixing the problem. And, if you are not in a position to do so (I understand that your job is in marketing and PR and to search out the web for what is said about Komen – which right now must be keeping you mighty busy) then get this in front of a person who CAN fix the problem.

I will be sure to include the appropriate tags for this post so that you get an alert as soon as possible.

A Very, Very Sad Monday . . .

6 Feb

The breast cancer world, and the world in general, has lost two amazing women in two days.

Here are the links to their blogs:

Rachel of  The Cancer Culture Chronicles and Susan of Toddler Planet

We really do need to “race for a cure”. I am so very, very sad today. My thoughts and prayers go out to the families and friends of these two remarkable women.

Please send your prayers out their way too.

Peace and love and hope,


Komen: Please Leave Me Alone

31 Oct

Today I was yet again, hit up for money by the Susan G. Komen Foundation for the Cure. This is what they had to say: “take advantage of these last few hours to show that YOU care and want to a make difference in our community” and “let’s use these last few hours to save as many lives as possible”

Here is my response to them.

Dear Susan G. Komen Foundation for the Cure:

I am a breast cancer survivor.

I was diagnosed in March of 2009. My Aunt died of breast cancer in 1994. At the time of my Aunt’s diagnosis I was in law school and Nancy Brinker came and spoke to the women’s law association at my law school. She was there to promote her foundation in her sister’s honor and to urge us all to get mammograms at age 40 and to do self breast exams. At the time I met Ms. Brinker, I could not help but wonder why it was that my Aunt, who was at that time suffering through chemo (and doing so simply to extend her life long enough to see her first grandchild born) had never had any contact with the Susan G. Komen Foundation for THE CURE. I listened to Nancy speak about her sister and about her pledge to “end breast cancer forever”. And, like many, I believed that she meant well. But, no one from her foundation every helped my Aunt. Still, I thought, well, maybe they are so busy “racing for a cure” that they do not have time or resources to help a dying woman . . . my aunt, suffering through chemo, no cure could come in time for her . . . and, after all, that is what Nancy’s foundation was racing towards . . . a cure.

So my family cared for my Aunt until she died. Her children, her sisters, her husband, friends all showed up. But, nothing from the Komen Foundation. But, then, that wasn’t their job, was it? No, they were busy racing for a cure.

So, after my Aunt succumbed to breast cancer (after she spent her last days unable to handle medical costs or afford basic comforts) I ran in Susan G. Komen’s Orange County Race for the Cure in her honor. I truly believed that my doing so would somehow make a difference. After all, Nancy’s goal was to “end breast cancer forever” and I was certainly behind that.

Fast forward to March of 2009 and through a routine mammogram I was diagnosed with an aggressive form of breast cancer.

I again showed up to your Orange County Race for the Cure. I was going through treatment, going through surgeries, battling infections, battling my insurance company, trying to survive without an income . . . I sought help from your organization. I sought help from you because you claimed – on your very own website – to provide financial assistance to women going through treatment. I desperately needed your help.

I called day after day after day the number that was provided on your website to apply for financial assistance. I called multiple times a day over a period of months. Each time I called there was an outgoing message saying that “no one was available at this time, please call back later”. There was NO way to leave a message. I searched your website repeatedly looking for an email address or some way of contacting the person who handles the financial assistance that your organization claimed to provide. There was nothing, no email, no point of contact, no way to leave a voice mail message. Instead, just a teaser (and a bragging statement about how you help women with the costs of their treatment).

I finally called the Orange County chapter. I explained that the New York Chapter that is the ONLY chapter that apparently has the authority to provide financial assistance to women going through treatment, did not ever answer their phone. I was transferred (after multiple calls and complaints to the OC Chapter) finally, to the director of the Orange County Chapter. I explained to her that I had not been able to reach anyone for months, that no one answers the phone in New York, that there is no way to leave a voice mail message. The OC Director immediately said, and I quote: “Yes, I know, they don’t answer their phone. Have you tried calling the Salvation Army? They can help you with your utility bills. Have you tried calling the American Cancer Society? They can help you get information on clinical trials. Have you called the Lance Armstrong Foundation? They can help you get emotional support and match you up with a survivor who has had the same kind of cancer as you.”

I was so dismayed, disappointed, crushed, heartbroken, devastated.

Meanwhile, I was undergoing Herceptin treatments and radiation and recovering from surgeries. I was unable to work. I was broke. I was lead to believe – through Komen’s own web page – that if I was in financial need that some of the nearly 400 million dollars that was raised that year could be used to help me while I was in need.

I am not one to be looking for handouts. I raised money for Komen. I have raised money for other cancer organizations. I was under the mistaken belief (as was everyone I know, all of my friends) that Komen actually helped out women who were in my position.

Not true. At least, not in my experience. And, clearly, from the OC director’s response, it is typical that no one answers the phone in the New York office – THE chapter charged with the responsibility of helping cancer patients with their treatment costs, and financial assistance. No other chapter at that time had the ability to provide financial assistance. All requests had to go through their chapter. I am certain that I made over 100 calls to that chapter – calling the number that was listed on your site for financial assistance. After the 30th call or so, it simply became a game, a “let’s see how many times I can call and not get a live person and not be able to leave a message” game. It was unbelievable.

I have shared this story with many . . . many who in the past donated to your organization who now will no longer donate to your organization because like me, they feel your organization is a fraud.

I was mislead. My family and friends were urged to donate to your organization believing that you would donate most of their donation towards either research or paying for someone’s treatment. Neither of those are true.

You say you want to “end breast cancer forever” yet, you spend about 19% of the money that you TAKE from good hearted people towards research.

We are all very aware of breast cancer. If you still think creating awareness is a necessary goal, then make it clear that the money you raise is going to awareness. But, instead, you trademark the language “for the cure”. Instead, you state that your mission is to “end breast cancer forever”. How can that be when you only spend 19% on actual research.

How can you claim to be helping women with breast cancer when the phone number that you dangled out there on your website to call for financial assistance has no one, EVER, at the other end.

I have found out through my own personal experience how little you actually do towards racing “for a cure”. My cure, if I have one at all is in spite of you. My survival, if I survive, is in spite of you. My ability to survive financially, to navigate the difficult insurance and medical bill waters, is in spite of you.

I will spend every last day of my life (however long that will be – by the way, I expect it to survive a very long time) making everyone I know aware of what you have not done. I want to believe that your organization stemmed from a desire to make positive change, to help those in need and to work towards a cure for breast cancer. But, my experience – up close and personal – has told a different story. I have received no help from your organization. When I have actually spoken to a live person at Komen, they have referred me back to the American Cancer Society, to the Salvation Army, to social workers that my hospital “might have on staff who could help me find financial resources”.

So, while I expect nothing from you, I do have this one request: STOP, please STOP asking me to donate money to you. Please stop asking me, a breast cancer patient who you ignored, who you mislead, for money. Stop asking me to buy your nearly hundred dollar bracelet every year. Stop asking me to purchase your toxic chemical containing perfume. PLEASE, please, please, just leave me alone.

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 . . .