Forgo the damn pink ribbon already

Considering all-of-the buzz in the media centered around Komen and Planned Parenthood recently, and considering that I am a breast cancer patient, I felt the need to chime in. Lets take a step back from the trademarked pink ribbon, the charity ‘for the cure’ legal wars, moral/political lines, phony political video spins, and work around the distraction, shall we?

Doesn’t anyone else out there think it’s a ludicrous, self-appointed platform, eh hum, I mean ‘promise’ to publically declare that you will personally end breast cancer on behalf of someone else? Is she a Biologist? Does she have her PhD in Biochemisty or Molecular Biology? … No, she’s a businesswoman, with political aspirations and a political past. Maybe she throws peanuts to researchers, but she doesn’t have breast cancer patient’s best interests in mind because the fraction of every dollar that does go towards research is a joke. She has her bottom line in mind. Showing a quick clip of someone working in a lab during her tacky half time commercials (doing who knows what) doesn’t cut it. That’s where my interest is: the science. And that is certainly where hers should be, but it’s not her priority.

Let me say something loud and clear. Mammograms don’t cure cancer, yet that’s what her organization touts as life saving. Mammograms don’t always detect cancer. A Mammogram didn’t find mine. My surgeon did during a core biopsy during which, she thought she was removing a benign lump. She had my Mammogram and Sonogram films and results from the Radiologist that conducted them and she was independent of their establishment. The films showed nothing. She didn’t know. So imagine her surprise, and mine, when the biopsy results came back. I was in no way prepared to hear the worst news of my life on the worst day of my life, and my surgeon was blindsided. She wasn’t prepared to deliver the news.

Does anyone else out there think that Susan G. Komen’s good name is being tarnished by her politically savvy and ambitious sister, whose job entails garnering public sympathy and asking for money from everyday women like you and me, while pulling in a cool $500,000.00 a year salary for herself? And by the way, she collects millions and millions of dollars in corporate donations each year on top of private donations, so even if the general public pulls away, her organization will still be fine. She’s already stinking rich and rubbing elbows with ex-presidents. Just read her Bio.  How out of touch with reality can one woman be? I can tell you one thing. She’s not my advocate. No thanks! I didn’t vote for her. I hope to God she never runs for any real office and I have nothing to thank her for. I do not want her representation.

Here’s the truth. Breast Cancer is ugly. Breast Cancer is deadly. Breast Cancer is an epidemic. One in eight women will face a diagnosis in their lifetime. I don’t know about you, but I don’t like those odds at all. I also don’t like the idea of any corporation (and Corporate Charities are a frightening prospect indeed) putting their hands anywhere near my tragedy, or should I say appearing to represent my disease without my consent. By default, because I was pale, bald and wearing head wraps, I was the recipient of earnest sympathy, the poster child of their October cause in my ‘pink washed’ neighborhood grocery store, inspiring countless people to talk to me and wish me well, hearing that they wanted to buy something with a pink ribbon on it, or donate to an organization because they thought it would help a patient like me, or the worst of all, assuming that I was coddled by the Breast Cancer Gods and very well taken care of because of the big names out there that ask for money that appear to do just that and don’t. If I had my way, I’d abolish every pink loop on the planet. 

Just walking around in my condition, anywhere in public was enough. That was all I needed to do. I hated it. It was humiliating on many levels, the worst being that I was somehow a mascot for a corporation that uses breast cancer victims to further an agenda.

Global branding in women’s health (which is the wish and ultimate goal of the Komen foundation) must not be allowed to happen. Just read this New York Times article. Considering how much they did for me with their 'donor dollars', I can hardly imagine what they will really do and are doing with the money. Think about it. What’s really going on? I’ll tell you what’s not going on: finding a cure.

Corporate charities don’t impress me at all. I’m sorry, but I’m just not impressed by any of them. Not one charity did anything for me throughout my entire ordeal. It’s not like I was in any shape to search for help and it’s not like I was hard to find. I was tethered to I.V. Poles dripping with toxic drugs in the Oncologist’s office. I was sitting in a hospital gown waiting my turn in the Radiation Oncologist office six days a week for six straight weeks. I was in the Cancer Ward in my local hospital after I inevitably took a turn for the worse. It’s not very hard to locate breast cancer patients. And if you’re a breast cancer charity, shouldn’t that be a priority?

I suffered immensely and lost almost a year of my life after diagnosis, without relent. I endured surgery, a port with a tube that threaded through a major vein that ended up tapping dangerously on the inner wall of my heart because it was inserted too far. It had to be abruptly removed. I endured thirty rounds of radiation that was so strong, that my skin cracked and bled. My nipple is still swollen (I’m told it will take a year to return to normal) and I still have visible lines from those burns almost six months later. I actually screamed in pain if anything including fabric brushed up against my raw, burnt breast at the end of Radiation sessions. I endured six rounds of toxic chemotherapy and forty rounds of Herceptin. I endured hair loss that began like clockwork three weeks into my first round of Chemotherapy that caused me such pain at the suddenly burning roots, that I had no choice to but to shave it off to get any relief at all. I endured a loss of energy and inability to keep up with my responsibilities to my family. I was nearly useless to them for nine months. I endured the inability to eat and keep my food down. I spent most of my mornings crouched in front of the porcelain throne puking my guts out. I lost my sense of taste. I endured chemo-induced menopause with incredibly intense hot flashes that prevented me from functioning on a daily basis long after the chemo was over. Sleeping, or even resting without highly addictive pain and anxiety medications (they are commonly prescribed for breast cancer patients like me) was impossible. I’m still working to get completely off of those meds and purging my body of so many chemicals that I wonder when, if ever, there will finally be no residual. No one told me how dangerous getting off of those drugs would be. Side effects for stopping the meds without slow and careful weaning include coma and seizures. The list is pages long, those are just two of the big ones. I’ll celebrate when it is finally over, but I’m still not done yet.

Don’t even get me started on the financial costs of being a breast cancer patient. Then there is the emotional and psychological toll. Post Traumatic Stress follows that first chapter of hell. And every breast cancer patient is on her own with that problem; unless she is lucky enough to find a support group with the luxury time doesn’t afford to attend some sort of healing session(s) or heaven help her: a much needed retreat. 

I wrote this blog at the height of my cancer crisis, on a day that I was lying in bed, searching for hope and inspiration, and answers to my desperate prayers. Instead, I found an article that slapped me in the face. I learned the truth about the misrepresentation and misappropriation of funds regarding my disease. In my case, as in a great many cases, there was no financial help. Zero! The grand total of my medical care is incomprehensible. It’s in the upper tens of thousands. The politics and business models poised to bring in the dough are strengthening and building momentum like Jack’s magic beanstalk. I can only hope the giants come tumbling down so that we can get back to the science of cells, eliminate the causes and actually find a cure. Patient care and research is where the majority of the money should be going. Period.

‘If walking and running could cure breast cancer, it would be cured already.’

‘275,000 women are diagnosed every year in the U.S. alone.’

‘40,000 American women die every year from Breast Cancer.’

Do something besides worry and shop.

Do your homework.

Forgo the silly races that make organizations richer and do nothing for women like me.

Start demanding answers.

Don’t expect to be absolved of your responsibilities to your fellow woman by shopping for something with a pink ribbon on it.

And lastly, please don’t give Komen any more money, or support the numerous corporations that donate to her Charity if you have a choice.

If Nancy Brinker even thinks about pretending that she cares about a breast cancer patient like me, don’t believe it. She’s busy spinning the bad press and saving her own ass. Thirty years after that ludicrous ‘promise’ we’re still at square one. It’s time for a shake up, and long past time for a cure.