Wednesday, October 31, 2018

Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer, Part 5

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association


Editor’s Note: This story is the final in a series of five about the author’s personal experience with metastatic (stage 4) breast cancer. This post details the author’s meetings with congressional staff in Washington, DC, advocating for metastatic breast cancer research funding. (Metastasis happens when cancer spreads to other organs in the body, such as the liver, lungs, or brain.)

Wednesday, Oct. 10 marked the second and final day of METAvivor’s “Stage IV Stampede,” and already it had been memorable. I marched among a crowd of people to Capitol Hill, demanding more research for metastatic breast cancer (MBC). We also took part in a “Die-In” demonstration, honoring the nearly 40,000 people who die from MBC every year. My grandmother died of MBC in August, so I participated in her memory.

Ready…Set… Go, Go, Go. 

The tearful “Die-In” had ended. Time to steel myself for action.

My fellow METAvivor activists and I walked to the Dirksen Senate Building to receive our schedules for meeting with members of Congress.


Stampede participants gather
for one final meeting before
speaking with congressional
staff.
Dane Christensen, the Health and Medicine Counsel of Washington’s lobbyist, invited people from Texas and Ohio to raise our hands. I saw about a dozen hands go up. He said we would walk together to the Hart Senate Building, home to our two states’ senators’ offices. I met my Texas teammates: Sarah, a young Dallas woman who came to DC to honor her godmother; Elaine, an MBC survivor from Houston; Vicki, another MBC survivor from Dallas (accompanied by her teenage son); and Carl and Sylvia, a Lubbock couple whose daughter had Stage III cancer while pregnant with their grandson.

Once inside, my group headed to Sen. John Cornyn’s office. There we met Patrick Michaels, the senator’s legislative correspondent.

One by one, we shared our stories. Vicki, the MBC survivor from the Dallas area, listed the two House bills METAvivor supports: the Metastatic Breast Cancer Access to Care Act (H.R. 6114) and Cancer Drug Parity Act (H.R. 1409). She said in the coming weeks she had to decide whether to quit her job to receive treatment. She described how the stress of that decision and worry about paying for her treatment would affect her family.

Elaine, the MBC survivor from Houston, said her cancer twice appeared in her breast, and moved to her lung, brain, and now — possibly, her spine. She fought back sobs as she revealed the spine diagnosis; she hadn’t even told her family about it yet!

My heart sank — but I admired the courage to share her vulnerability with us in that room.

Legislative correspondent Patrick Michaels (left), meets with
METAvivor's Texas team.
I was next to speak.

 I told Patrick my grandma passed away from MBC in August. “Losing her has been so hard for me, but I knew I wanted to turn my grief into action, so that’s why I’m here,” I said.

He looked at me with a notable sincerity.

“My grandma actually passed away from MBC a few years ago, so I understand where you’re coming from,” Patrick said.

When I heard that, I felt encouraged about the meeting. Patrick told us he would read both bills and brief Senator Cornyn on everything.


When we arrived at the Rayburn House Office Building, our Texas team split up. Vicki, her son, and Sarah headed to Rep. Pete Sessions’ office because his district covers their area in Dallas. Elaine, Carl, Sylvia, and I  walked to Rep. Kenny Marchant’s office. Congressman Marchant represents the 24th Congressional District, also in the Dallas-Fort Worth area.

There we met Lindsay Hurley, the congressman’s staffer.

She didn’t appear to be that much older than I am.

I briefed her on the two bills, and talked about my grandma’s diagnosis.

“While it may be Breast Cancer Awareness Month, a lot of focus is on early detection,” I said. “That’s important, of course, but what about the people who find out they have cancer at a later stage?”
(Left to Right): Carl, Lindsay Hurley, Elaine, Olivia, and Sylvia
pose outside Rep. Kenny Marchant's office.

Thankfully, she understood.

“My aunt had cancer, Stage III, and I know our family was scared about it coming back at some point,” Lindsay said.

Before she walked us out, she addressed me.


“I’m sorry to hear about your grandmother, too. I lost mine last year and it’s not easy.”

“Thank you,” I said. “Grandparents are a treasure.”

Final Thoughts

I spent my last night in DC packing my suitcase, and I called my mom.

“Hey mija,” my mom answered. “How was your day?”

I told her about the Capitol March and the Die-In. I shared Elaine’s personal story, and how this courageous stranger shared her awful news that day — news she had yet to tell her own family. I tearfully told my mom how the trip opened my heart even more to other people suffering from MBC.

 “I’m so proud of you,” she said. “Your grandma would be, too.”

Olivia holds a photo of her late grandmother, Estela.
I always knew my grandma would be, but hearing those words made everything more real. Upon my return to Texas, I’d revert to my daily routine, but I didn’t want my advocacy to end with this trip. I still don’t. I want to keep fighting for better treatment for these survivors. I want Congress to pass both the Metastatic Breast Cancer Access to Care Act and Cancer Drug Parity Act, and increase metastatic cancer research funding. I want this terminal disease to become a treatable condition, where men and women with this diagnosis can live longer and be with their families. I want my grandma’s legacy — the strong woman she was, both before and after her diagnosis — to live on, because as we chanted on Capitol Hill, stage 4 survivors need more.

They deserve more.

(For more information or to get involved, visit https://www.metavivor.org/.)



VIDEO: Adversity to Advocacy: A Granddaughter's Story of Stage 4 Breast Cancer


TMA Media Relations Coordinator Olivia Suárez travels to Washington, DC to advocate for more stage 4 breast cancer research funding after losing her grandmother to the disease. Video highlights key moments from the "Stage IV Stampede," including the METAvivor advocacy training, march to Capitol Hill, Community Die-In, and visits with congressional staff.

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