Tuesday, October 29, 2019

Stage 4 Needs More: A Granddaughter’s Continued Journey into Breast Cancer Advocacy – Part 3


(L to R): "Stage IV Stampede" participants Kim, Lauren, Tami, Olivia, Eva, and Allison at the U.S. Capitol lawn.
 Photo by Olivia Suarez
By Olivia Suárez
Media Relations Coordinator
Texas Medical Association

Editor’s Note: This series is a follow-up to the author’s 2018 five-part series, “Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer,” about her personal experience with metastatic (stage 4) breast cancer, and her return advocacy visit to Washington D.C., in October, which is Breast Cancer Awareness Month. In the second installment of her blog series, the author wrote about her new and renewed friendships with fellow MBC survivors and patient advocates. In this installment, Olivia describes her second time participating in the March to Capitol Hill and the “Die-In”, and meeting her new state team.

I had finished day one of METAvivor’s “Stage IV Stampede” to lobby on metastatic stage 4 breast cancer (MBC) patients’ behalf, and I already cherished being in the nation’s capital again, thanks to the new friendships I made with the other attendees. Day two would be action-packed, starting with a march to Capitol Hill. METAvivor, a nonprofit organization focused on MBC research, support, and awareness, organized the event and drew supporters to Washington. We were eager for our voices be heard about stage 4 breast cancer, a disease that kills 114 people every day.

A Morning of Loudness and Silence

The morning of day two I met my fellow marchers sporting my white METAvivor tee, my new MBC ribbon pin, and my flats (last year I made the mistake of walking Capitol Hill in high heels). The March to Capitol Hill would start at 8:30 am, followed by the “Die-In,” then visits to members of Congress’ offices.

I brushed up on the talking points we would be telling congressional staff.

“Okay, ask for a $3 billion increase in National Institutes of Health metastatic cancer research funding, mention the two bills to support MBC research and patients, and mention the need to include better MBC patient data in the SEER Registry…” 

As I combed through my notes, I remembered why I was there.

(L to R): Tami, Olivia, Eva, Lauren, and Huiwen
 (another MBC survivor) pose before marching to Capitol Hill.
Photo by Olivia Suarez
Grandma,” I thought to myself. “This is for her.” I lost her last year to MBC. That loss devastated me, and inspired me to attend the METAvivor Stage IV Stampede last year. A year later, my resolve to fight this disease in her memory has not diminished.

I soon found my fellow marchers – Eva, the MBC patient from California, and Lauren, a patient advocate from New Jersey. Eva was joined by a videographer friend, Vinny, who mic’ed her up for their video documentary on the event.

“Remind me not to say anything too personal if the mic is still on,” she told me. I laughed.

 “Alright everyone, let’s move out!” organizers yelled over a megaphone.

Olivia chants for more MBC research funding on the way to Capitol Hill.
Photo by Olivia Suarez
The chants began as we hit the streets.

“Stage 4 needs more!”

“What do we want?”

“Research!”

“When do we want it?”

“Now!”

“We are DYING for a cure!”

Just like last year, I shouted these chants with hundreds of fellow marchers. I wanted every bystander to know why we were there. I looked at the others alongside me, their faces lit with passion and determination.

The author stands in front of the U.S. Capitol.
Photo by Olivia Suarez
What an amazing thing, to be a part of this,” I thought.

The 15-minute march concluded at our destination, a big grassy area. I relished in my surroundings. A year ago, I was Olivia from Austin, a granddaughter in mourning with no experience in advocacy; yet now there I was, a seasoned MBC advocate once again standing on the lawn of the U.S. Capitol. The “Die-In” was set to take place there, honoring the 114 men and women who die from MBC every day – more than 40,000 each year, according to METAvivor – and the people who are still fighting the disease.

More than 200 people laid on the grass, holding cards with the names of people who had died from MBC within the past year. I found this to be an extremely moving experience when I participated last year. Organizers rang the bell 114 times – one ring for every person lost – followed by a moment of silence.

This year, I looked up at the sky, then closed my eyes. I recalled memories of my grandma visiting me in my childhood home, shopping with her at Target, and seeing her for Thanksgiving. It brought a sense of comfort. I also thought about other families who lost loved ones. I thought about METAvivor board member, Monica Hill, who I befriended at last year’s march. Since then, the disease took her too. She passed away in April. I prayed that my lobbying efforts would make a difference. They had to.

More than 200 men and women stand on the U.S. Capitol lawn before laying on the grass for the Congressional "Die-In". The event honors the 114 people who die from metastatic breast cancer every day.   Photo by Olivia Suarez

“All right, Team Texas.”


"Stage IV Stampede" volunteers prepare to get into their state
teams before meeting with congressional staff.
Photo by Olivia Suarez 
A half-hour later, everyone met in the historic Kennedy Caucus Room in the U.S. Senate’s Russell Building. After opening remarks, we would split into our state teams, to ask our federal lawmakers to support the cause.

I looked at Team Texas’ schedule for the day, which was busier than last year. We had five meetings and three offices to stop at to drop off our informational materials.

Minutes later, an organizer called out, “All right, Team Texas!

I stood up cheering, proudly flashing The University of Texas’ iconic “Hook ‘em” hand sign, which got a few laughs. When I scoured the room, I saw three other women standing.

The Texas group was smaller than I expected, but that didn’t faze me. I joined Jennifer, an MBC patient now living in Round Rock; Anne, Jennifer’s aunt; and Sharon, an MBC patient from Houston. I realized I’d be the only returning member from last year – the group’s only “veteran” at this.

Oh my. 

Watch for the fourth part of Olivia’s story, “Team Texas Takes on Congress” on MeAndMyDoctor.com.

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