The Best Surprise

It’s not often I log onto Facebook and get a wonderful surprise. Many times its filled with not so good news about friends reporting on test results or finding out another has died too soon. But today isn’t one of those days.

Today I found out I was put into the company of some pretty amazing bloggers and named along with them one of the Best Metastatic Breast Cancer Bloggers of 2015 by Healthline. EEEK!!  I’ll be honest, I’m freaking out a little bit.

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http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs#9

When I started my blog after my diagnosis, my purpose was to document my illness – good, bad and ugly and to have something my son could go back and read for when he was ready. I also hoped that if someone learned something from my experiences or was able to feel like they had someone in their corner it would be worth it. I also believe in being as transparent as I can be so, when I can, it all gets put out there.

I want to thank whoever is responsible for adding me to this list. I’m absolutely and truly honored. I’m thankful for those that read my blog and those that comment. This honor makes every last word I’ve ever written worth it and I’ll continue to keep writing for as long as I can.

Xoxoxo ~ Susan

The Day We Died At The Capitol

I attended a Metastatic Breast Cancer conference back in April in Philadelphia hosted by Living Beyond Breast Cancer.  It was a memorable experience for many reasons. The most notable was that a new movement was born from that conference.

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MetUp is the brainchild of fellow mester Jennie Grimes. As was the rest of us, Jennie was sick and tired of watching our friends die while the public at large and our own government does nothing and wanted to begin a movement that will rattle cages and make people stop and rethink research priorities.

Also, during that conference, Beth Caldwell put her admiration of the women’s sufferage movement into a modern action. We were going to ‘Die’ at the conference. We gathered 110 women and laid them down in the hallway and a moving ‘eulogy’ was read. Not just any eulogy but one that told of our anger and distain for the lack of any real progress toward a cure and that losing 113 people every day was unacceptable.

Since that day we began working tirelessly to stage another Die-in that, we hoped, would get more attention and really rattle bigger cages. Washington DC was that cage. Through the efforts of many but specifically the core members of MetUp, meetings were set with some key members of Congress and the plans were being made to host our first Die-in as an advocacy group.

Yesterday, folks began to gather on the West lawn of the Capital. Signs were brought of loved ones lost and those that couldn’t attend.

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The buzz in the air was that of emotion and excitement. Meeting people that I only knew on-line and putting faces with names was so surreal. And they were just as excited to meet me as I was to meet them!

Papers with numbers were handed out in preparation of the Die-in. People began to get into groups and Paige Rosllio sprung into action. Immediately, Paige began to take charge and call out groups of numbers.  It was really happening.

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When every last person was in place, Beth, Paige, CJ Corneliussen-James and myself stood near the fence adorned with posters of every one with metastatic breast cancer living and dead. And it began…at the stroke of Noon.

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After a brief thank you to all in attendance and reading the MetUp Mission Statement, I introduced Beth Caldwell. Beth’s speech was inspiring, devastating but most of all, from the heart. Those laying down were quietly sobbing.

I then introduced CJ Corneilousen James, Co-founder, President and Director of Advocacy of METAvivor. CJ spoke of METAvivor’s mission and why it’s so important to advocate for more research funding for Metastatic Disease of all cancers.

Then we died.

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Paige Rosllio read our eulogy just as she did in Philadelphia. There was a moment of silence and then we all sang “The Circle Will Be Unbroken”. Paige rang a bell 113 times for the number of people that would die that day and every day while there is no cure. After thanking everyone for coming, the Parks Department and the District of Columbia we came together to hug it out.

It truly felt like an historic event. All of us coming together for a cause we all feel so passionately about and making it happen was electrifying.

There were meetings with lawmakers on the hill that afternoon. They are going on the rear of the week.  Those still in DC really feel they are getting thru to the lawmakers that can make this change everyone needs. Asking for 30% of funds going to Metastatic disease is NOT unreasonable.  It will make a huge impact.

There will be more Die-in’s going forward. We will keep making noise and speaking our truth until we are heard and the changes we need are made. We won’t stop. We can’t stop.

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If you’d like to keep on top of what’s happening with MetUp, please follow their website: metup.org, or their Facebook page