What Do You Want?

I feel like someone has removed my brain, stomped on it and reinserted it into my head.  So might you if you've been following the debates raging on Facebook and the breast cancer blogosphere over the last week or so.  From critically analyzing the societal worth of campaigns like  "I <3 Boobies" and "Feel Your Boobies", to a blog post improbably titled, Breast Cancer: Let’s Fight The Disease – Not Each Other, which actually seemed to tacitly disparage the National Breast Cancer Coalition's mission to stop breast cancer by 2020, and then ironically erupted into a war of words in the comments section; I feel exhausted yet also emboldened and motivated.  

On one hand it was disheartening to see the blatant ignorance that still exists in considering the breast cancer culture, and indeed the censorship that went on with one incident when confronted with breast cancer truth.  But on the other hand, I saw spirited discussion, energy for new ideas and deep questioning of the breast cancer status quo which gives me hope that change might be coming to the breast cancer movement.

But there's one point on which I am still very confused.

CBS News recently ran a story called "Breast cancer mommy; Brave, beautiful.....and bald". Essentially it was a fluffy little piece about cancer patients losing their hair, and how they can "rock their baldness" and still be "brave" and "beautiful".  Yep heard all this before. I get it.  Hair doesn't define you.  Hair loss shouldn't affect your self worth.  Cancer can't take away the essence of you; yada, yada, yada.

Then I read the author's biography, and I felt my blood pressure beginning to rise to something past a slow simmer;

"Meredith Israel, 37, was diagnosed with stage 4 metastatic breast cancer in June, 2009. She says she's in the fight of her life, determined to prevail for the sake of her family, including her 3-year-old daughter, Niomi, and her husband, Gary. Meredith found her breast cancer through self-examination and a mammogram. Since being diagnosed, she has raised more than $100,000 for breast cancer research and has been a vocal proponent of self-exams and early detection."

Now don't me wrong.  My heart aches for this woman.  I understand only too well the devastation of a Stage IV cancer diagnosis and to throw children into the mix as well?  Well, it goes without saying that cancer is never a good news story.

According to the story, Ms Israel "has raised more than $100,000 for breast cancer research and has been a vocal proponent of self-exams and early detection."  Now I really hope this story was reported correctly and the $100,000 really did go to research, and if that's the case then I applaud Ms Israel for her efforts.  It's a wonderful achievement.

Then  my mind started working overtime.  I wanted to know what kind of research?  The kind that could possibly result in treatments or yield findings that could potentially help Ms Israel with her prognosis?   Or did the money go to research that, although might eventually be helpful to others, won't help further knowledge about metastatic breast cancer?    Then I wondered why would someone with metastatic cancer openly advertise themselves as a proponent of breast self-exam and early detection?  Neither causes are scientifically proven to offer any guarantees as either reliable methods of screening, nor indicators of whether a person will go on to develop metastatic disease.  Further, neither of these causes have really been shown to impact mortality rates from breast cancer, which remain barely unchanged in decades.

It is at this point I should clarify where I'm going with all this.

Many of the breast cancer fundraising campaigns we see today are invariably founded, or have  involvement at some level, by breast cancer survivors.  The "I <3 Boobies" and "Feel Your Boobies" campaigns are good examples, and indeed Susan G. Komen for the Cure's founder, Nancy Brinker is a breast cancer survivor as I'm sure are many of the staff and volunteers.

But here's what I don't get.  I have Stage IV breast cancer.  It's a bad situation.  Right now I'm focused o n trying to get the best treatments and give myself some sort of a fighting chance (whatever that means).  I'm well aware that in order to truly survive this disease I need some sort of a miracle.  One that might, just might, come out of a research laboratory.  But it's going to take time, money and focus by all relevant stakeholders.   I've also come to realize that getting research funding to focus on metastatic cancer is a pretty tall order.  It's not a popular mission for myriad reasons, and it's a fight to steer money in this direction.  So what can I do?  I can donate.  I can tell my friends and family to donate.  And I can use this blog to speak out on the topic and try to get people to think more deeply about this issue.

It all comes down to the fact, that I want something better for myself.  There I said it.  Selfish me.  Wanting to live a long life as well.  Wanting to live the dream of the victorious cancer survivor.

And yet, still we throw money at fundraising campaigns whose main priorities are breast cancer education, awareness and so-called early detection programs.  Research is treated like the ugly step-sister and invariably gets pushed down in the priority spectrum, or just not even funded at all, in favor of the glitz, sass, sexiness and glamor of more cutesy breast cancer "awareness".  How much more awareness do we possibly need?  We're stuck in a rut that's not moving the fight forward to end this disease.  We're just screening and diagnosing and feeding the cancer machine, with not enough thought as to how we can stop the machine and how we can help the people stuck inside it.

Well, I'm sick of it.  Where's the anger people?  Why don't we want something better for ourselves?  Why not be advocates for research that might actually help those of us currently dealing with this disease AND those still to be diagnosed? What's wrong with being selfish?  It's our lives we're talking about here.

And for those selfless people who continue to work so tirelessly to fund raise for these awareness campaigns; I thank you for your efforts, but I implore you to ask yourselves who all this awareness is helping. Consider the questions raised by Gayle Sulik where she asks "What Good Is Awareness If...."  

We're stuck in a dangerous rut that values breast cancer awareness and early detection as some kind of holy grail never to be criticized.  Awareness and early detection will not make any difference to my life or my outcome, nor the thousands of others dealing with this disease and the 40,000 women or so statistically slated to die from breast cancer this year alone.  Sure, awareness and early detection campaigns might help get someone diagnosed, but then what?  Successful treatment? Maybe, maybe not.  The bottom line is this.  Science still can't tell us who's going to draw the short straw.  It could happen to anyone at anytime.  Regardless of early detection, breast-self exams and no matter how much more money we throw at breast cancer awareness.

We can and should be doing better.

Awareness DOES NOT EQUAL Breast Cancer Cure.

Ask yourself, if you were me, what would you want?