Tuesday, October 30, 2018

Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer, Part 4

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association
Editor’s Note: This story is the fourth of five in a series about the author’s personal experience with metastatic (stage 4) breast cancer. This story talks about the author’s participation in the advocacy group METAvivor’s “Stage IV Stampede”, the march to Capitol Hill and the “Die-In” remembrance event on the Capitol Lawn. 

Before traveling to Washington, DC, I had no experience with politics or advocacy. But after my grandma passed away from metastatic breast cancer (MBC) in August, I wanted to use the grief I felt to make a positive change on behalf of people currently battling the disease.

The experience felt more real when I met Rhonda and Corinne at the METAvivor Stage IV Stampede advocacy orientation in Washington, the night before our big advocacy day. The two women are MBC survivors and mothers of young children. They left me in awe. Each had faced a horrible disease like cancer twice, but never let it break their spirits. Instead, they were here fighting for a better future; one they saw with their families. Their drive inspired me to do my best tomorrow, our METAvivor advocacy day. We would stage a march, a demonstration, and ultimately lobby lawmakers for support in the fight against this disease.

“Stage 4 Needs More”

"Stage IV Stampede" participants
received a sign to carry at the march. 
I woke up the next morning with a sense of urgency.

Around 8:15 am, I arrived at the group’s hotel lobby and entered into a crowd of white MBC t-shirts. The march to the Capitol Building wouldn’t be starting for another half hour, so I sat down in the lobby to review notes on the legislation we would later discuss during congressional visits on Capitol Hill: the Metastatic Breast Cancer Access to Care Act (H.R. 6114) and Cancer Drug Parity Act (H.R. 1409)

A woman named Tami sat down in the chair beside me.

“Hi there,” she said. “Where are you from?”

“Hey,” I said. “I’m from Texas. I’m here in honor of my grandma.”

I shared my story with her. She listened intently, then shared that she was from the Northeast, and was diagnosed with MBC a few years back. She had young children. Tami brought the conversation back to me.

“You know sweetie, your grandma would be so proud of you being here,” she said. “The fact that you came all this way by yourself, and after only two months. Don’t discredit your being here.”

I watched her walk away to join her friend, a woman named Monica. She served on the METAvivor board, and is currently battling MBC. In fact, she was slated to start another round of chemotherapy in a few days.

Tami approached me again a few minutes later.

“Hey Olivia, do you want to march with Monica and me at the front of the line?”

I nodded. Tami then introduced me to Monica, who gave me a hug. She looked so young.

“Olivia, that’s my daughter’s name,” Monica said. “We’re so glad you’re here for your grandma.”

“Thank you,” I said. “I’m really happy to be here.”

Before we could continue our conversation, several organizers ushered us outside of the hotel. It was time for the March to the U.S. Capitol to begin.

Olivia Suarez, along with dozens of men and women,
march to Capitol Hill for stage 4 breast cancer research. 
“Alright everyone, we need you to be loud when you repeat these chants. We want everyone to hear our cause,” one organizer said.

My heart started to beat fast.

Say it with me, Stage 4 needs more!

It was time for the advocating to begin.

113 Rings
Participants hold the names of men and women who died from
metastatic breast cancer in the past year at the "Community Die-In."
“What do we want?”
“When do we want it?”

Dozens of us shouted these chants during the march to Capitol Hill. I had never participated in a demonstration before,  but marching with these survivors, raising my MBC sign, demanding change — it made me feel like I had purpose. Here I was, marching in Washington, DC, of all places. I couldn’t get enough of it.

About 15 minutes later we arrived at the Capitol Lawn. Organizers ushered us in for the “Community Die-In,” an event designed to represent the 113 women and men who die from metastatic breast cancer every day. That’s almost 40,000 people each year.

Olivia Suarez holds a photo of her grandmother
during METAvivor's "Community Die-In."
I settled on a spot on the grass in front of the event’s speakers. A volunteer handed me a card with the name “Sarah Swanson” written on it. Sarah was one of women who lost her battle with MBC in the last year.

After a few brief speeches, we all laid down on the grass in silence, holding the card of the individual we were given. Before doing so, I pulled a photo of my grandma out of my bag. I wanted her to be acknowledged as well.

Organizers played a touching song as we laid there. I wept.

After the song ended, they rang a bell 113 times — again, to commemorate the 113 women and men who die from MBC every day.

For me, the tears kept coming. I just couldn’t stop crying. I had heard the Die-In was a cathartic experience. Now I understood why.

Watch for Olivia’s final “Adversity to Advocacy” blog post on MeAndMyDoctor.com: Ready… Set… Go, Go, Go: Taking Our Cry to Congress.

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