Her smile was bright, her wit was sharp and her heart was as big as the universe. In Pink Ribbons Inc, she said:
“It’s almost like our disease is being used for people to profit. And that’s not okay.”Sandy Kugelman died on Friday and the world is a little dimmer today than it was last week. This has proven to be a most difficult post to write.
Sandy was my friend. We never met in real life but as I've repeated so many times, It Doesn't Matter. It hurts. We connected deeply and we have been talking offline for about 18 months. It started when she wrote the words "thank you AnneMarie" in a public forum where I opened my big mouth. It was a debate about Pink Ribbons Inc and I was trying to speak as a Fearless Friend. I was stunned to see her comment and her validation meant so much.
I shared a little about Sandy in a blog I wrote just two months ago. More than the blog, I hope you will read the article in Austin American as it paints such a beautiful picture of how she lived, of who she was. My friend, Grazia wrote a post for her Italian audience. I said this piece was difficult to write and I initially forgot to include the link. For Grazia, it's personal, too. My global buddy.
Want to hear Sandy? At the 1:10 minute mark of the trailer for Pink Ribbons Inc, she speaks those words quoted above. At the 1:50 mark, Mari, another member of the IV League Support Group spoke other very telling words.
"We're living. We're human beings. We're not just a little pink ribbon."
When Mari died in October of 2011, Sandi was heartbroken. Mari's death was recounted in this blog post by a family member and Sandi shared her sorrow in a comment. The first time I connected with Sandy, she told me about Mari.
This interview from October 2009 is a must listen to.....
She pretty much nailed every aspect of what I hear when I listen to those with metastatic disease talk of their fears, their frustrations, their need to connect with the community.
True to form, Sandy's caring spirit lives on in her wishes which were shared on her Facebook page. Even in death, Sandy made sure her voice would be heard on behalf of those living with metastatic disease and the 30% of us early stagers who will develop distant recurrences.
May there always be another treatment option and may there come a day when the treatment options are not debilitating and afford all metastatic patients long and full lives.
I miss that smile. I miss that wit. I miss Sandy.
"In lieu of food or flowers, Sandy asked that donations be made to METAvivor.org, an organization she strongly supported for its emphasis on meaningful cancer research, rather than 'Pink Ribbon' breast cancer organizations."
Just a note: The San Antonio Breast Cancer Symposium is this week. I expect this blog may be a bit on the quiet side as I watch the news coming from Texas. Less than 90 minutes from Austin, where Sandy was laid to rest this weekend.
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