Redemption. That was my personal theme of the week my husband, Elliot, and I spent in Washington, DC in early October, 2018. October is generally a hard month for those of us dying of stage IV metastatic breast cancer. There’s a reason METup’s slogan is #dyingforacure. Being around all of the fluffy pink celebrations all month long is difficult and heartbreaking. When we knew that we could redeem that feeling by doing something tangible, we jumped at it.
200 metastatic, early stage patients, caregivers and supporters gathered for the march to the Die In in the early hours of the morning on October 10, 2018. We compared notes then took off marching for about a half a mile, shouting and chanting … stage IV needs more … don’t ignore stage IV … what do we want? Research. When do we want it? Now. There is something amazingly cathartic about marching and yelling together with 200 of your closest friends. We even had a motorcade escorting us to the lawn in front of the Capitol building.
Once we reached the lawn, we sat down and then everyone laid down to draw attention to the 114 men and women who will die every day in 2018 from stage IV metastatic breast cancer. It was 113 each day in 2017. There were some speakers, then a song that was written just for METup was played and then we rang a bell 114 times. There wasn’t a dry eye anywhere near us. In addition to the music and the bells, each person laying down held up a name of someone we lost in the past year. Not many of the participants were empty handed. It was powerful.
Once the Die In was concluded, we then walked over to the senate office building for some training and then we were broken down in to states/regions. The Florida group was the largest. The Sunshine state was well represented! Talking to staffers and our own Congresswoman was cathartic. Again, we were doing something meaningful and tangible.
Elliot and I skipped the debriefing session to spend time with my brother, sister in law and niece. It was a difficult journey but one that I will never forget.
I learned that I can redeem the devastation of a terminal illness because it’s really hard to tell a cancer patient to be quiet. I learned that there are many other men and women from many walks of life who have my diagnosis and my perspective. I learned that being around other stage IV men and women is powerful and what I needed. I learned that my husband will walk through fire for me with a smile. I learned that I have a voice and I’m pretty loud. (I’m lying, I knew that already).
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