Tag Archives: susan g. women

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??!!!

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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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I still love the fall . . . but

1 Oct

Fall has always been my favorite time of the year. I live in Surf City, USA, walking distance from the beach. I love it here. Summers are crowded with vacationing tourists and locals sometimes roll their eyes a little bit over the people that invade our home for those three solid months of summer. But, I actually like the summers too. I like that I live somewhere where people want to come and spend their vacations – it is a great reminder of how lucky I am to live here. And, I even enjoy the crowds – especially knowing that it is a temporary condition. Sometimes I walk down to the beach on a July or August day and it looks like there is one large pep rally going on, a sea of umbrellas, beach blankets, and sunburns. And then there are my family and friends that come to visit (maybe a little bit more often in the summer – to escape the inland heat) and my downstairs tiled entrance is covered in sand, and I like it because it reminds me that my nephew has just visited.

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This is my empty beach 🙂

But, when summer winds down and the crowds leave and fall approaches – that is my favorite time of year. Surf City returns to this little small town. The crowds are gone and it is just “us”, those who live here year round. The locals here know each other, I often walk to a local breakfast place and they know my name (no, it isn’t Cheers and I am not Norm). They know what I am having for breakfast and I am asked if I want my breakfast now, or “do I want to sit for bit” (I like to read the paper). I visit with other regulars. It is nice. And the beach – the empty expanse of the beach in the fall

Pink Ribbon chocolate lollipops for Breast Can...

Pink Ribbon chocolate lollipops for Breast Cancer Awareness Month. Saving lives one processed, sugar containing ribbon at at time? NOT.

– is truly remarkable. I feel like it is a secret because if people only knew that the beach here is empty this time of year – surely they would come. The weather is amazing right now, the sunsets are glorious and I am grateful to have this all right here where I live.

This is my favorite time of year. But, October . . . not so much. I still love it here. And, thankfully the beach does not become riddled with pink ribbons. I am grateful for that. But everywhere else? It is Pinktober.

I most definitely do not like Pinktober. It has always felt like this big scam. And when my Aunt was dying of breast cancer the sea of pink all felt so wrong to me. What had big pink done for her? What had the Susan G. Komen Foundation done for her? They did not help her get better, they did not “race for a cure” for her. They did not race for a cure for me. They did not race for a cure for any of my friends who have metastatic breast cancer and they did not prevent my Aunt or any of my friends from dying.

I have thought a lot about how I was going to deal with Breast Cancer Awareness Month, the pink onslaught.

Would I write scathing articles about Susan G. Komen’s hoarding of all of the breast cancer research funding and how they have – for so many years now – hijacked the lions share of breast cancer research funds and not actually put it towards research? (In 2010 the Susan G. Komen Foundation only put 14% of the 389 million dollars they raised in the name of “racing for a cure” towards research – the rest of it went to, oh I don’t know: maybe salaries – like Nancy Brinker’s $600,000,000 plus a year salary, to pink port potties maybe, to pink golf carts, maybe . . . who knows . . . but it didn’t go towards research).

Would I skip shopping for the next month (as I did for the most part last October) to simply avoid being bombarded by the pink? Would I refrain from speaking up in a grocery store line, and telling people how I really feel about SGK and pink-washing, when I am asked if I will “donate money to breast cancer”?

Every time I was in the check out line of my local grocery store last year, I was asked “if I wanted to donate money to breast cancer” . . . I don’t even know what that means – donate to breast cancer. I sometimes wanted to respond with: “No thanks, I donated my breasts, some lymph nodes, and peace of mind to breast cancer . . . I think that is quite enough for now.”

It is all this big giant shell game really. “Here, let me take your money for buying that pink ribboned, processed, cancer-causing, hormone-disrupting “food” product and we will put some of that money towards . . . something and you will feel like you have done something good today”.

I’m not saying that money does not go to research. I am saying that not enough money goes to research. And, I am saying that I think we have enough awareness – at least of breast cancer – that it exists.

But, some are unaware that after all of these decades of pink, decades of “races for the cure”, decades of “awareness”, and decades of Pinktobers, mortality rates for breast cancer are basically the same, unchanged. So where’s this race they keep talking about? I think it has been pretty much a run around in circles. And for someone who has attended a few “races for the cure” I can say that there has been little or no attention to metastatic breast cancer at these events. Metastatic breast cancer is the only kind that kills. It is the kind that killed my aunt. It is the kind that has killed my friends. It is the kind that will kill more of my friends and it is the kind that could kill me if the cancer I had were ever to recur.

That is what bothers me. I could stand the pink a whole lot better if I thought it were actually doing something.

I still haven’t figured out what I am going to do this October. I know that I am going to live my life, run my business, play some music, take walks on the beach, participate in the 12 week breast cancer “Step by Step” clinical trial (it is an exercise program for breast cancer survivors and it started yesterday) and I am going to be grateful and I am probably going to agitate a little bit . . . because that is how change happens. And we most definitely need some change.

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Coming up for air . . .

11 Dec

I don’t even know where to begin. I have started to write a blog post so many times in the past several months, but have not been able to finish one. I have so many “saved drafts” of what should be a simple, easy thing to do – writing a blog post – but nothing. I haven’t been able to get past the first few paragraphs because if I were to continue with something I would actually make public, well. then it would not be true.

So instead, my only contribution lately has been to re-iterate my complete disdain for the Susan G. Komen Foundation, Nancy Brinker et. al. and that is about as far as I can get.

I just haven’t been able to speak personally here at all. It is just too much.

It is all fine and good when all you have to say is that the coast is clear, things are getting better, “I’m feeling stronger every day”, “everything is so much better now”, “cancer is behind me”, oh and let’s not forget my favorite: “I’m so grateful”.

First of all, I am grateful. Grateful to have celebrated, just a few day ago, another birthday. A birthday that a few years ago I had about a 50/50 chance of having . . . so yes, I am really, really, really grateful.

But, for some reason, as I make my way back to a more normal life post cancer, I am finding it harder and harder to cope with post cancer life. Because, you see, there is no real return to your life before cancer, there is no “cancer is behind me” – at least not in the sense that cancer ends and you go right back to the way things were before. And, I am not saying that I want to go back to the way things were before entirely. But, let’s just say that I liked feeling like I had a path and I knew what that path was and I was able to handle my life.

So I haven’t had much to say here. I jumped in only once during the month of October and that was simply because some idiot posted a nasty (and mostly just ignorant)  comment on one of my posts from last year where I asked Komen to leave me alone. I had to respond to this person because, well, I had to. I highly doubt that my reply has convinced this person to stop drinking the Komen Koolaid, but, I gave it my best shot.

I find it is easier to express myself in areas cancer related when it is confined to the following situations 1) talking with someone who is newly diagnosed and who needs some support, encouragement (“look at me, I am fine, you will be too”, etc.) or 2) calling out Komen for their misleading use of “for the cure” when in fact they (in my opinion) are more interested in their own commercial branding, the PINKWASHING of corporations and the continual re-perpetuation of lining their own Komen pockets and the pockets of those companies for whom they sell their pink ribbon in the name of pink washing . . . NOT the cure they constantly profess. (For those who have not heard of the term “pinkwashing” it refers to the practice of companies who produce products that actually cause or increase the risk of cancer paying for a pink ribbon – a “for the cure” stamp of approval – which then leads people to further purchase these cancer causing products, consume them and actually feel good about it). Pinkwashing is bad. But perhaps one of the most horrific things that Komen does is to to claim that they are “for a cure” and yet only donate somewhere between 14% and 19% of the money they raise in the name of a cure to research. (Some years Komen has raised nearly $400 million dollars – just think that if instead of only donating about 14% of that money to research, they donated 50% or 80% . . . now that would be something, wouldn’t it)?

See . . . this is all I feel comfortable writing about. It IS important to tell this story of Komen – the very true, very wrong story that IS Komen.

BUT, I have a life. And that life is one that has become increasingly difficult to share about here, online. I have felt guilty about not sharing here. I feel as though I have abandoned a commitment that I made. There are a group of women bloggers who are devoted and passionate about writing – this is true awareness (and it is awareness that Komen does NOT provide). There are women that have taken up the cause in every way and continue to do so, they don’t give up – women like Anne Marie at Chemobrainfog, Kathi at The Accidental Amazon, Phillippa at Feisty Blue Gecko, Nancy at Nancy’s Point, and so many others (I have so many to add to my “blogroll” here. In fact, my next post will be a list of bloggers I think you should follow, that I wish I had more time to follow). And sadly there are so many newly diagnosed women who are now joining us here on the blogosphere.

In the beginning I wrote to let family and friends know how I was doing. It was far easier than making phone calls since most of my days were about fighting with my insurance company and simply keeping up with treatment and the sometimes 6 medical appointments in one week. It was a full time job.

Now as I have returned to my real full time job there are many adjustments to make. It has been hard. There was a cancer scare last summer that seemed to trail into the fall and take over the past several months. Fortunately all turned out well. But, it was a series of tests, biopsies and finally a surgery to remove the (thankfully) not so offending tissue. It wasn’t fun. But, as the anesthesiologist told me before I went into surgery last month, “this will be a breeze compared to what you’ve been through”

LOL

I didn’t know whether to find peace in that statement or to simply cry. I did take solace in that whatever was coming was not going to be as bad as whatever had happened before. But, it did really strike a chord with me – that this surgery was going to “be a breeze”. My life since 2009 has been anything but a breeze. But, whose life is? I recall days I could barely walk and the friends that would take me on walks because I couldn’t go alone and so desperately wanted to walk . . . they went with me, walked as slow as I needed to go so that I could get that mile in if I could. Those were some days.

And now I can run. And now I can work a forty hour work week (and then some). And now I am getting my life back. But, there is an expense that comes with that – a lack of balance I guess. I am grateful to be rebuilding a business I had to close down because of cancer. I am grateful for the opportunity to start over. But, I am tired. It is so hard and it is so difficult.

To be reliable in my business, I have to be unreliable in my personal life. That stinks. I hate that. But, what choice do I have? I have been clawing my way back with every ounce of my being to regain whatever I can – physically, financially. To do those two things I have little time or energy for anything else. I am trying to create a new version of my business, one that will fund a more balanced life. But, until then I am working very long hours after which I pretty much just go to bed. I communicate with few people and go out rarely other than work related things. I am determined, so determined to get my life back. But, I am grateful for what I have today and I am hopeful for a future that enables me to do more of what I want.

I miss spending time with friends and family. I miss having time to connect with my friends and family. And, I miss writing here too. I hope to be back in more ways than I am now. But, I am here and so grateful for that. This most recent birthday was amazing. I truly did not think back in early 2009 that I would be here now in 2012. I will never forget what my doctor told me when I asked her if I could survive this. She said, “The best thing in your favor is your youth and that you are physically strong . . . fight”

Those were chilling words for me. When I pressed for statistics I was told not to think about numbers (of course this was because the numbers for me were not good). But, that time is gone now. Those days are over. And now I look toward a future where hopefully I will remain cancer free.

It is hard to keep your eye on that prize sometimes . . . I have lost three friends to cancer in this past year alone. I have seen two more friends diagnosed with cancer. It is an epidemic and it seems to be one that is affecting younger and younger women. Of course I am no scientist. I am simply going by what I see. We need to do something. Komen is not it. (I know, I always come back to that). But, clearly what they are doing is not working. We need real money going to a cure. We need research funded for all types of cancer and in particular – the kind that kills – metastatic cancer.

Well, now maybe you will understand why I haven’t posted anything here in so long. This ramble, jumble of a post is going to be posted. To those of you who have been unable to reach me, who I haven’t called back, or been able to see, please understand why and please accept my apologies. I hope that next year will be one where I am able to have more balance and  can do more than simply work 🙂 But, I AM so, so, so very grateful I am able to work like I am right now. It is wonderful.

I wish everyone a wonderful holiday. I will be spending mine with my family – we will be doing our third annual Tappas Christmas (that is how I celebrate Christmas now post cancer – no more boring turkeys or crown roasts for this girl . . . I’m mixing it up).

Much love to you all and thank you for your continued prayers.

Lisa

P.S. To everyone who has tried to reach me, please keep trying and don’t give up on me. It is not because I don’t love you, I am just doing the best that I can. Things will get better 🙂 I appreciate your understanding. Happy Holidays.

Me and my niece last summer :)

Me and my niece last summer 🙂

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