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fb_img_1476576999516 — Melissa McAllister, Me & Melanie Childres representing The Underbelly

As a metastatic breast cancer patient and advocate, I try to use my voice in many ways to bring awareness to the fact that metastatic disease is woefully underfunded. I’ve been lucky in that I’ve been able to travel to be with friends and other fierce advocates because, let’s face it, there is power in numbers.

Last year, I traveled to Washington, DC to participate in the 1st Annual Die-In at the United States Capitol with Metup.org. The event was held on October 13th, Metastatic Breast Cancer Awareness Day. It was a symbolic visual event where advocates and metastatic breast cancer patients gathered on the lawn, lay on the ground and ‘died’ just as 113 women die every day of this disease. The Die-In was a bold vision that came from the brilliant mind of Beth Caldwell during a Metastatic Convention in Philadelphia in 2015 in which I was in attendance. You can read about that here.

This year the event was joined by other significant partners such as: METAvivor.org, CancerlandLandtv and Refinery29 and was renamed #StageIVStampede. We found out just days before that Oscar winning actress Mira Sorvino would also be attending and supporting her longtime friend, Champagne Joy. The significance of this is unprecedented as no other celebrity or voice of such magnitude has ever lent their voice to the Metastatic Community. The typical voice of a public figure with regard to Breast Cancer is the standard “pink” rhetoric of ‘stay positive and you can beat it’. That was not the message Mira had for lawmakers or the media. And OMG – we met her and she is AH-mazing!

fb_img_1476577012061 — Melissa McAllister, Champagne Joy, Susan Rahn, Mira Sorvino & Melanie Childres #Stage4Stampede, Washington D.C

I attended the event representing The Underbelly.org, the online magazine dedicated to changing the breast cancer narrative I’ve talked about in previous posts, along with my co-editors and magazine founders, Melissa McAllister and Melanie Childres.

The day began at 8:15am. Everyone gathered at the Washington Monument to organize, and then began a peaceful organized march with signs in hand to the west lawn of the Capitol building. During the march I took pictures of those walking, hugged friends we came upon and even did a live feed via Facebook from The Underbelly page! Halfway to the Capitol we were met by a reporter for Refinery29 who asked to speak with us about why we were marching and why the was significant to me, a Metastatic Patient.

Once at the Capital we organized, heard speeches by MET UP co-founder, Beth Caldwell and then we laid down on the grass as a bell tolled 113 times representing the 113 women that die every day. As it was the previous year, it was emotional.

fb_img_1476513030942 — Melanie Childres, Melissa McAllister & Susan Rahn – Dying for a Cure – Photo By Kipp Burgoyne.

After the last bell rang, as people began getting up, people embraced and the love and the promise of hope filled the air.

Many went on to hear speakers like METAvivor President, Beth Fairchild, METAvivor Co-Founder CJ Corneliussen-James, and Patricia Steeg from National Cancer Institute in the Cannon Building before breaking off into groups to meet with lawmakers. Their purpose was to inform them of the importance of allocating more funds to metastatic research and sharing personal stories is key in being successful.

Any lawmaker would be hard-pressed not to be emotionally moved after hearing personal stories from these Stage 4 advocates as to why research is important to them.

It was a good day seeing old friends and meeting new ones. It’s always a treat to meet in real life, people you interact with online on a daily basis and give them that long, overdue hug.

We kept our Underbelly readers updated throughout the day with live Facebook updates from various parts of D.C. while we literally logged over 9 miles of walking. I’m willing to bet we helped Starbucks stock just a tiny bit that afternoon.

We ended the day taking pictures of the sun setting over the Capitol, the Washington Monument and the Smithsonian before taking the train back to our car.

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I’m already looking forward to next year’s event but truth be told, I’m secretly hoping it won’t be necessary because our lawmakers heard us on October 13th.

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.

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.

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.

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.

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.

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.

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

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The Day We Died At The Capitol

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