I am not a professional journalist. I'm not a health care writer specializing in breast cancer. I'm a woman who writes a blog. I'm the irreverent one. The blog was supposed to be a joke. A means of laughing about my rearranged brain, if you will. So what the heck happened?
I am now an advocate. I am a volunteer at a cancer hospital. I'm a breast cancer patient. I'm a Ned-Bat. After a discussion on Marie's blog, I've decided to ditch the word survivor in its entirety. NedBat. "No Evidence of Disease, Beyond Active Treatment" which technically isn't an accurate portrayal of my "status." I'm still taking an aromitase inhibitor and I will continue to take those pills for another five years. The need for daily medication doesn't exactly put me outside of active treatment. Nonetheless, I'm a NedBat.
And, I call it like I see it. I don't just make shit up as I go along. If I don't know something, I will not just make something up to fill the air (or the page). But, if something is wrong, and damn.... there is MUCH wrong with the pink ribbon culture, I'm going to be at the front of the line making noise. Because I can. Because I should. Because others can't.
Last Thursday, I had the honor of representing Breast Cancer Action on WNYC which is the NYC National Public Radio station. If you happen to be the one person out there who hasn't heard about my newly found "fame,"the interview can be heard here. NPR wrote their own review of the movie in which they note, "the indignation seems justified on at least one point: that the pink ribbon movement thus far has done more for marketing than for medicine."
I am a member of BCA and I am completely familiar with their mission. The radio invitation was to promote our movie. Pink Ribbons Inc. opened in NYC on Friday. It's playing through tomorrow. For those who have had the opportunity to see the film, there are MANY topics discussed in the movie. From my vantage point, Pink Ribbons Inc. is a means to opening up a conversation so that we may finally begin to CHANGE the conversation. Yes, the film takes on much but for me, it boils down to those words...... "more for marketing than for medicine" and that is the primary take away message. That is the message upon which, in my opinion, we must begin to focus.
With that in mind, I realize when one steps into a public forum, there will be opposing points of view. I am always respectful of the views of others. I'm mindful when I speak to others or comment on a topic to stay with the topic, not attack the person. I suppose being on the other side of the radio, without the ability to participate in the discussion, some might get a bit reactive. And in some cases, people don't take the time to use their words with care. The result, they most certainly appear to be downright mean-spirited.
The comments below were coming in as we were on the air. Fortunately, I wasn't able to see these comments although I doubt I would have hijacked Mr. Lopate's microphone. I was a guest in "his house" and as I guest, I know how to mind my manners. Others might do well to follow suit.
Listed below are the comments. I highlighted those I found to be personally offensive. In the framework of a thirty minute radio interview, it is simply not possible to dig deeply into some of the complex issues like the overall use of research funds. That does not warrant someone to sit in judgement by calling our knowledge into question. Yes, I scoff at awareness. We've been aware for TOO long. Years and years ago, the enormous sums of money we are STILL SPENDING ON awareness campaigns could have been dialed down in favor of better education and translating a much more significant portion of the pink funds into research labs.
This persistence in the comments that there have been treatment advances from people who should know better is mind boggling. The treatment advances are minuscule in the scheme of the big picture. Yes, the treatment is more personalized but the OPTIONS are the same. Exactly the same in my case and my mom was infuriated to read how I am "dead wrong" ...... I extend a personal invitation to anyone who is interested to come and do a side by side comparison of my mom's treatment records and my own treatment options and choices. FOR me, I will repeat: There has been no progress, just an IV pole.
The side effects are still horrible and the long term effects of the toxic drugs continue to plague me. The nurses are in hazmat suits to protect themselves from the chemicals that will soon be coursing throughout our bodies. Dead wrong? I HOPE that opinion was coming from someone who knows about chemotherapy FIRST HAND and is not basing his ridiculous opinion on what he's reading in books. It's one thing to intellectualize something like chemotherapy. It's quite another to be hooked up to a machine watching these colorful poisons dripping into your veins.
And then, semantics. Yes, cancer is the result of cells gone amok. Mutants. Got it. The fact is most breast cancers will be diagnosed in women with NO family history. The rest of the audience seemed to get that concept...... The purpose of much of what was discussed was to raise the right kind of awareness. To begin meaningful dialogue. To change the course of this disease. Looking at metastatic cells in a lab is important work. Most important? Finding a way to stop the deaths of the women in whose bodies those metastatic cells are wreaking havoc. Quite simply, nothing has changed. At All. And That Is WRONG. That's not progress. That's death.
Here are the comments.... with a very special thanks to Mary from Fort Greene for jumping in...... And, my own comment on the NPR site thanking everyone for their participation is at the very bottom of this post.
Karen from Bernardsville, NJ