Wednesday, October 2, 2013

The Other Awareness

 I have been packing to move. For a few hours this morning I tackled my storage closet. There was one box way in the back with writing on it that said "Circle Girls- Do NOT throw out."

I opened it up and in it were letters and cards from the sisters I have come to know over the years through my breast cancer network. There was a group of us called Circle Girls in one location and they moved over to the No Surrender site when it was started. "Circle Girls" refers to circling the wagons to protect ourselves from cancer, where we sit around a warm fire, in a circle of friendship, understanding,  love and much laughter.

I found the cards they all sent me when I was diagnosed for the second time. I found CDs we had burned for fun music. I also found letters and notes from sisters who we lost over the years.  These women were very dear to me and their deaths left a void in all of our lives.

Among all the "Awareness" this month, this part of breast cancer doesn't get talked about much. Instead you see Danika Patrick's hot pink race car; a Real Housewife from Orange County naked with only her special pink purse covering her healthy breasts,  and TV reporters all decked out in pink telling us all to "feel our boobies! "

The NSBCF has an awareness campaign all year long. It is for African American women who are young, much younger than the government tells us to get our first mammogram, to get screened through many different modalities. Because if they develop breast cancer it will most likely be the harder to treat triple negative breast cancer and one that you want to treat at its earliest stage. You can find it here : http://nosurrenderbreastcancerhelp.org/4/0.html

You would really have to be living under a rock to not be "aware" of breast cancer today. There is almost no mention, however, of the millions of women who are dealing with breast cancer every day and who are in treatment for the rest of their lives. These women have metastatic disease.

Metastatic breast cancer is cancer that has spread beyond the breast to distant sites. It could be the bone, the lung, the liver, the brain and many other places. When someone has "mets" they are continually scanned for progression of their disease. If their scan is stable, that means they may get a chemo break for a while. If there is some growth but no further spread they actually find themselves being happy if the lung lesion "only" grew 2 centimeters. A finding that would normally terrify someone. It is often said that non-metastatic women live with "the new normal." Metastatic women live in "a new reality" and it is a scary, stressful and heartbreaking realty.

We need more treatments for advanced disease. We need to find a way to stop the spread of breast cancer throughout the body. We need these women to be able to live their lives without the shadow of The Beast breathing down their necks, every hour of every day of every year.

All the beautiful women I saved the letters and cards from who left this earth had metastatic disease.

I have recommended a good place to send your donations to before and I will recommend them again, it is The Cold Spring Harbor Laboratory. It is my belief that they are a research organization that will find the key that will open the door that will lead us all out of the hell of breast cancer - in fact all cancers.  Here is their link: http://www.cshl.edu/

This October, don't pink. Instead, on October 13th take a moment to recognize Metastatic Breast Cancer Awareness Day by sending a donation to an accredited research organization.

People never know what to say to others who have serious diseases. It's simple: We are here for you. We will fight for you. We love you.

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