Please don’t look away……

Today, October 13th, is Metastatic Breast Cancer Awareness Day, the only day of Breast Cancer Awareness month devoted to metastatic disease. I can’t imagine anyone today who is not aware of breast cancer as pink awareness campaigns are everywhere, yet few people know anything about metastatic breast cancer, much less understand it.  I think our natural instinct when something horrible happens is to cover our eyes. We look away as if in some way that will make it go away. Then we take a quick peek through our fingers and close them again quickly when we realize whatever scared us in the first place is still there. We do this literally when we watch a scary movie,  view a news stories about a tragic event or witness someone being injured. And we do this metaphorically when something scares us and hits too close to home. We seem to somehow think that if we don’t acknowledge whatever it is, we will be safe. It won’t happen to us. We don’t think about how much it must hurt the person actually going through tragic circumstances to see us look away.

National Breast Cancer Awareness month was founded in 1985. Every year the number of people marching, running and shouting that we need a cure has increased and the amount of money being raised has skyrocketed, yet 40,000 women and men are still dying every year just in the U.S. In our zest to unite and fight this battle we have somehow forgotten those who are fighting on the front lines. We celebrate and give each other high fives for our progress while pushing aside those actually dying from this disease. We claim we want a  cure, yet less than 7% of funds devoted to research are focused on metastatic disease and only 2-3% are focused on a cure for metastatic disease. We throw our energy into raising money and buy pink products yet don’t actually know where the money is going. We claim we are winning the fight because 5 year stats for cancer in the earliest stage has improved even though 30% of those diagnosed with early stage go on to a metastatic diagnosis.  We believe that there is a treatment or a cure when in reality 98% of those diagnosed with metastatic disease die from it and the other 2% die with it. We want to believe it has become a chronic disease kind of like diabetes when the mean life expectancy from diagnosis is only 33 months and many don’t even live that long.

And when we see someone fighting metastatic disease, we embrace various myths that help us believe that we are safe. That it won’t happen to us. We assume it is somehow their fault. They didn’t get a mammogram. They didn’t take the recommended treatment. They didn’t have a positive attitude. When they speak up about their plight we label them bitter or angry and dismiss them. We try to silence them so they won’t scare those with earlier stages of the disease. We say they are the exception. We hope if we can keep them at arms length we can keep believing that they are somehow in a different category, one we will never join.

When we look away we are not only hurting the women and men living with metastatic breast cancer. We are also hurting ourselves. We are marching around in circles making very little progress towards our goals because we keep turning away from what scares us. Cancer is scary. Metastatic cancer is even scarier.  We need to face our fears head on. The truth is metastatic cancer can happen to any of us. We need to acknowledge it. We need to listen. We need to face those living with this horrible disease, look them in the eye and let them know we see them. We need to listen to them. We need to accept that they are us and we could be them. They are our mothers, sisters, daughters. They are our fathers, brothers, sons. They deserve to be seen. They deserve to be counted. They deserve to be heard. They deserve a cure.

My challenge for you today – click one of the links below and meet them. See their faces. Read their stories. Don’t look away even when their stories make you cry. Learn about metastatic breast cancer. Then give up something this week in their honor and donate the money you save to Metavivor.org – the only organization devoted to giving 100% of all donations directly to metastatic breast cancer research. Take a sandwich to work and donate your lunch money. Skip pizza night and eat at home. Watch a movie on DVD and donate what you would have spent on tickets and overpriced snacks. Individually it isn’t much, but together we can make a difference. Pink won’t cure breast cancer. Awareness won’t cure breast cancer. Research will.

To read their stories:

Story Half Told – beautiful stories and photographs of several people living with metastatic breast cancer. Also includes stats from a study showing how much misinformation exists about this disease.

Metavivor – not only a great place to donate, but also to learn about metastatic breast cancer. They are using the #numbershavenames hashtag on twitter and Facebook to tell the stories of those we have lost.

#iamsusan – a campaign started by Kelli Parker. She is posting collages of those living with the disease and those we have lost as well as posting individual stories. She has encouraged others to use the hashtag to tell their own stories too. You can search for #iamsusan on Facebook, Twitter and Instagram, or see Kelli’s posts on her Facebook page or @smellimd82  on Twitter.

MBCalliance has a campaign designed to call attention to the lack of awareness of metastatic breast cancer. You can view the video here. The video includes a fellow First Descents alum Sarita (Trooper) – an amazing advocate who embodies the FD motto Out Living It.

MetUP  – an activist group that organized the die-in today in Washington D.C. has a lot of great information. Their Chorus of Voices is a good place to start.

Please feel free to post links in the comments to other organizations focused on metastatic cancer and to websites or blogs where people living with this disease tell their stories.

#iamsusan #numbershavenames #storyhalftold #metup #metavivor #dontignorestageIV

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