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You all know my feelings about Susan G. Komen (see my commentary here, here, and here). And it has always been puzzling to me that a woman whose sister supposedly died of breast cancer that metastasized would establish an organization that hardly mentions it and funds research for it far less than other organizations.
Komen (as an organization) possesses an innate hubris and avarice that allows them to treat those who infringe on their copyright with very heavy hands. It has over 200 trademarks all of which are watched over and protected by a well paid legal counsel. Komen thinks nothing of strong-arming charities for use of the words “for the cure.” In 2010, Komen legal counsel, Jonathan Blum said
“It’s never our goal to shut down a nonprofit,” he said, “and we try very hard to be reasonable, but it’s still our obligation to make sure that our trademarks are used appropriately so there’s no confusion in the marketplace over where people’s money is going.” [Huffington Post, 2010]
I would think as legal counsel that it would also be Komen’s obligation to ensure that they do not infringe on the intellectual property of other organizations. But apparently this is not the case. For as we see with the Elephant in the (Pink) Room campaign put forth by Kohls and Susan G. Komen, they took possession of the intellectual property of METAvivor without so much as a second thought.
When I saw this campaign for the first time I was not told that it infringed upon METAvivor’s copyright, but as soon as I saw it I knew it was so. In fact, it was blatantly obvious. When they were called out on it, Kohl’s Senior Vice President of Marketing called METAvivor President Kelly Lange and was apparently willing to do exactly what Komen has done for the past thirty-two years: throw up a few sentences about metastatic breast cancer and call it a day. Enough is enough.
METAvivor needs your help. The women and men with metastatic breast cancer that have been patronized for over thirty years need your help. Please continue to use social media to support METAvivor in this cause.
- OCCUPY #talkpink with messages calling for Kohls and Komen to do the right thing.
- BOYCOTT Kohls. Ask your friends to do the same.
- Please devote space on your blogs and Facebook pages to inform your readers of Kohls’ and Komen’s callous disregard for METAvivor’s intellectual property.
- Please urge your readers to BOYCOTT Kohls.
This is no joke, folks. We need to pull out all the stops and do everything we can to support METAvivor while they work with their legal team. Hopefully they will be able to take steps to make Kohls and Komen cease and desist.
These organizations have a dimension of greed that is incomprehensible to me as an individual, and it is to that greed we must address our grievance.
As a result of social media pressure, Kohl’s has finally reached out to METAvivor. As they open a dialog we must continue to apply the pressure. Continue tweeting because all of your tweets have an extensive reach. Every tweet brings both pressure to Kohls and Komen, and educates. Keep up the great work and continue to help METAvivor.
There’s no getting around the horse’s ass: Kohl’s and Susan G. Komen made a reprehensible move. It’s the same old cause marketing shill that makes money for Kohl’s, employs another celebrity hack, and fills the coffers of Susan G. Komen for the Cure. And this time they did something really original: they plagiarized the intellectual property of METAvivor to make more money for their staff, counsel, and marketing executives. ”Everyone knows about breast cancer,” Katie Holmes is quoted as saying on the ad. ”But it’s what we do about breast cancer that can make the difference.”
Funny, that is exactly what METAvivor does successfully every day: raises awareness about funding discrepancies that shortchange metastatic research in the cancer world and directly funds research of metastatic breast cancer. Yet on the entire #talkpink site not one word is mentioned about metastatic breast cancer. It is unquestionably repugnant.
“Together we can start the conversation,” my ass. While we chat and make two multi-million dollar companies more money, more men and women have died from this disease. Komen isn’t serious about metastatic research. Stop talking. Fund real research or join the all-volunteer force today. No one is making money from breast cancer here. No celebrities are being paid. Instead, they’re making a real difference.
Okay, just one more commentary on this ad campaign and I will move on.
When I found out that I had breast cancer, the world-class surgeon to whom I was referred downplayed its seriousness. When I look back, it has to be one of the single oddest moment of the surreal life I began to lead in July 2012. He told me that if I were to have cancer, then breast cancer was the one to have.
I didn’t know any better at the time. I repeated it to my family and friends. I’ll be okay. This is the easy cancer. Repeating it even made me feel better. And then quite suddenly it wasn’t easy anymore.
I was diagnosed with metastatic breast cancer about three weeks into my initial diagnosis of invasive ductal carcinoma. As I broadened my knowledge base and connected with organizations and individuals, I learned that breast cancer was never the easy cancer. I could have any combination of surgery and medication and still face metastatic breast cancer at some point in the future. Or not. What an awful thing this really was. My surgeon was talking out of his ass. He had assumed a paternal role and was just patronizing me. One of the reasons I walked away from that practice.
Truth is, metastatic cancer is just as hard as any other kind of breast cancer, it’s just that its stakes are higher. Medications work and I don’t know for how long. Then one of them stops working and I go on another. It’s working, but making living impossible. So I try another and hope that it works. I go from scan to scan hoping the latest ache doesn’t show up as a hot spot. And now I always walk with a cane. There isn’t a choice. Sometimes I think I don’t need it and, for awhile, I don’t. And then things get so that I do. And sometimes I pretend I don’t really need the narcotics I take on schedule, but I always do. I’ve stopped trying on both accounts.
And one thing we all face–regardless of the cancer any one of us might have–are the goodbyes. All of the goodbyes. The friends that we make and grow to love suddenly become quiet. Blogs aren’t updated. Twitter feeds go silent. Good wishes litter static Facebook pages like a carpet of leaves.
Like many of you, I was Twitter buddies with Jada. When I saw that she was entering hospice we sent private messages back and forth. Nothing more could be done and she told me that she had made peace with that. She always asked me how I was doing, wished that I was pain free, and wanted me to have a good life. I would tell her that she was loved and how much I appreciated her. I had a rough couple of days and hadn’t checked Twitter, but as soon as I was able I sent her a message on January 29. I told her she was loved and that the weather in NYC was colder than it had been for years. And then I read on AnneMarie’s blog that she was gone. I had missed her last tweet on January 27: “Y se me va la vida….and my life goes away….“. She died on January 28. Thirty four years old.
It was on the heels of this young woman’s senseless death from metastatic breast cancer that Pancreatic Cancer Action UK launched its advertising campaign. “Hard hitting” they called it, as if to lend credibility to the central message that having breast or testicular cancer was somehow “better” than pancreatic cancer. The organization’s founder staunchly defends the campaign because when she was diagnosed she wished she could have had breast cancer. The good cancer. The one with all of the wonderful outcomes. The one with all of the money. The one that the public loves and will walk miles for. The one that is pink. The one that is pretty.
The one that kills. Every 74 seconds someone in the world dies from metastatic breast cancer. In starker terms? One thousand one hundred sixty seven individuals every day die of breast cancer.
1,167. Dead. Every. Day.
Five days after PC Action’s “hard hitting” campaign shit across the television sets and public spaces of the UK and the internet, we know no more today than we did before about pancreatic cancer. And the entire episode has left me feeling hollow inside. All I know is that it was a lousy move; what a short-sighted and self-indulgent campaign this was. It has added nothing to the basic knowledge set about pancreatic cancer’s signs and symptoms, just a pool of very unfortunate individuals wishing they had good cancers.
I can’t make sense of any of it. Our friends die every day and we have to put up with this?
Originally posted on ihatebreastcancer:
Congratulations, Pancreatic Cancer Action.
Your brilliant marketing plan is working. It was a stroke of genius to have Tube ads and YouTube videos of people saying “I wish I had testicular cancer” and “I wish I had breast cancer.”
I know that my blog posts and Twitter activity have been minimal since august of 2013. It was a miserable year filled with tests, pain, and uncertainty. I think I have been distant because, in large measure, I just want to forget it. I wish I could forget it. In fact, I wish I had one of those easy breast cancers. You know, the ones where you get a lumpectomy and some radiation and you’re cured? I wish I had one of them.
I’m sorry; I don’t mean to be flippant. It’s just that all of a sudden people are wishing they had breast cancer and I wanted to get a sense of what cancer envy is like. But I can’t wrap my brain around that. I think if you’re stupid enough to wish you have breast cancer then, damn, it’s yours! And, in truth, I’m happy to hand it over.
Let me walk you through it all so you’ll know what’s coming. First you’ll get the tumor flare that kicks off a whole host of severe back pain. And, the docs will tell you that its receded, but guess what? The fucker comes back! Then there’s three months of agony, a month of weird anxiety, and then it finally dies. And then there’s a necrotic hole there or something? It was always a bit vague, but while that hole is healing up nicely with the aid of the monthly Xgeva shots you’ll need to get, then there are months of uncertainty where your boss is champing at the bit to find a way to get rid of you since you can’t quite make a full week for months. You struggle with bouts of sheer exhaustion, joint pain, and fear. Christ, sometimes you’ll wonder why you even bothered.
And I have it pretty damned easy as opposed to many of my sisters, so that a short term plus at least. Now along with that you’re going to have to consider the other bone metastasis. Oh, didn’t I tell you? I have metastatic breast cancer. I’m sorry if you didn’t know that, but a deal’s a deal. Looks like you’re going to die anyway.
Life is brutal like that. If you had any real sense you’d have done some serious research before jumping on the “Gimme Breast Cancer” wagon. There are a lot of different breast cancers: pre-cancers, full-blown staged cancers, positives, negatives, and ones that are inflamed, and then there are those that become metastatic breast cancer.
This is the one that will kill you. It depends though, you can have one that will kill you in short order, one that hangs around and then gets you, or you can win that very, very lucky lottery that only a tiny sliver of people have had–where a spot is radiated or cut out and you go on to live a healthy life. But don’t worry about that one. If you’re dumb enough to want breast cancer then karma is smart enough to make sure you bypass that tiny sliver so you can get to enjoy what most women do: medications, surgeries, financial hardship, loss of job, independence, and death.
The grass is always greener on the other side. Particularly when you are possessed with cancer envy and don’t bother to ask the right questions.
We all talk a lot about what cancer has done to our lives in one shape or another. The pain, loss of employment, our body image, insurance, bankruptcy, self-esteem, and a hundred and one other negative impacts. Some folks even think cancer was a blessing–but not many. (And certainly not me.)
Yet when it comes to intimacy we suddenly become very quiet. I won’t say that it is nonexistent, but most of us don’t talk much about what–if any–effect breast cancer has had on our sex lives. And that’s just heterosexually. I have found next to nothing that explores the experiences of gay men and lesbian women with breast cancer, let alone problems of intimacy after the fact.
So who is doing it? Anyone? As a matter of fact, someone is and I want to get the word out about this important work.
AnneMarie Ciccarella, who went through her own breast cancer experience and became a serious activist on behalf of women, is setting her sights on breast cancer and intimacy. Share Those Moments is the conduit through which AnneMarie is seeking your stories about your experiences with breast cancer and other gynecological cancers and intimacy.
Partnering with a respected gynecological oncologist, their shared intent is to compile as much information as possible in an effort to explore the topic in depth and find patterns and shared experiences. Or, as AnneMarie notes, “find out what is really happening behind closed doors (and in our minds too).” Both hope to compile this work in a book on the subject that will serve as a resource for those who have gone through these disease experiences and their partners.
If you would, please take a few moments to explore the project and add your voice to those already participating. It will help the project. It will help you. It will help us.