Thursday, October 31, 2019

Stage 4 Needs More: A Granddaughter's Continued Journey into Breast Cancer Advocacy – Part 5

By Olivia Suárez
Media Relations Coordinator
Texas Medical Association

Editor’s Note: This post is the last installment in a five-part series about the author’s personal perspective on metastatic (stage 4) breast cancer, and her return visit to Washington D.C., in October (Breast Cancer Awareness Month), to advocate for research funding and increased awareness of the disease. In this final story, the writer describes the last of her meetings to urge federal lawmakers for support, and reflects on what this year’s “Stage IV Stampede” means to her.

This series is a follow-up to the author’s five-part 2018 series, “Adversity to Advocacy: A Granddaughter’s Story of Stage 4 Breast Cancer,” about how the loss of a loved one motivated the author to travel to our nation’s capital to speak out against metastatic breast cancer.

Mrs. Estela Shimanek, the author's late grandmother.
Photo by Olivia Suarez
As I walked through the halls of the various Senate buildings, a rush of excitement came over me. Here I was, again in Washington D.C., advocating for increased research and funding for metastatic (stage 4) breast cancer – otherwise known as MBC. I wanted to continue the efforts after my grandma Estela died from the disease in August 2018. On this day, Friday, Oct. 11, I found myself not only engaging with congressional staff, but guiding the rest of my team of fellow advocates. I felt good about how the rest of the day would go. 

Voicing Our Truth

My fellow METAvivor MBC patient advocates from Texas and I entered U.S. Sen. John Cornyn’s office just before our 1 pm meeting, and asked for Patrick, a staff member there.
A few minutes later, Patrick Michaels, Senator Cornyn’s legislative aide on health, entered and shook everyone’s hands.

 “Hi Patrick,” I said, “Olivia. We actually met last year.”

A look of recognition crossed his face. “Oh yes, I remember,” he said. “Good to see you again.”

Our little team of Texas MBC advocates – six women from across the state, survivors and loved ones of those were not so fortunate – followed him into a conference room. The others wanted me to introduce us. I told Patrick that we were here to raise awareness about stage 4 breast cancer, and that 30% of people who are treated for early stage breast cancer will have their cancer metastasize, meaning it spreads to other parts of the body. When the cancer reaches this stage, it is incurable, I told him. I informed Patrick that patients live anywhere from 18 to 36 months after diagnosis. We asked them to support bills increasing MBC research funding.

Then Sharon and Jennifer opened up about their experiences.

Sharon, an MBC patient from Houston, told Patrick she had been diagnosed with inflammatory breast cancer, a rare and aggressive form in which cancer cells block lymph vessels in the skin of the breast, making it swollen and red. Patients with this type of cancer do not live as long as women diagnosed with other types of breast cancer.

Tears streamed down her face as she described her fate. I reached into my bag to grab her some tissues.

(L to R): Denise, Sharon, Patrick, Anne, Jennifer, Olivia, and
Valerie meet in U.S. John Cornyn's office to share their
experiences with stage 4 breast cancer. Photo by Olivia Suarez
Jennifer spoke about how she, a woman in her early 30s, discovered a lump in her breast, which led her to see a doctor. She shared how she discovered she had a genetic mutation – despite having no history of breast cancer in her family – and that her cancer appeared before the recommended age to receive a mammogram (age 40 and above). We felt her frustration, and her heartbreak.

Patrick responded empathetically, sharing how his own grandmother died from metastatic breast cancer, and that he would do everything on his end to make sure Senator Cornyn will hear our requests. We believed his sincerity.

From Senator Cornyn’s office we headed over to the Rayburn Office Building, where U.S. Representatives offices are located on the other side of Capitol Hill. The next two meetings were scheduled at the same time, so we split up. Valerie, Jennifer, and Anne met with the office of U.S. Rep. Kenny Marchant from District 24 (the Dallas-Fort Worth area). I went with Sharon to visit the congressional aide for U.S. Rep. Sheila Jackson Lee from District 18 (in Houston).

(L to R): Sharon, Sheerine, and Olivia pose for a selfie after
meeting in Rep. Sheila Jackson Lee's office.
Photo by Olivia Suarez
Sharon and I arrived at Representative Lee’s office and met with a staff member named Sheerine, who didn’t know much about metastatic breast cancer. Nonetheless, she listened and sympathized with us, especially as Sharon teared up when she shared her story. It turns out that not only has Representative Lee cosponsored both the Metastatic Breast Cancer Access to Care Act and Cancer Drug Parity Act, she is also a breast cancer survivor herself. Sharon and I left the meeting feeling confident about getting the congresswoman’s support for our cause.


We rejoined the rest of the team for our last meeting, in the office of U.S. Rep. Michael Burgess, MD’s office. His legislative aide, Casey, engaged with us by asking questions about the bills we want the congressman to support. She told us that Representative Burgess, who is a ranking member of the Subcommittee on Health, is all for prioritizing health concerns, given his physician background. She assured us that his office will urge other congressmen and women to cosponsor both bills and sign the letter to the National Cancer Institute on updating the SEER Registry, the database that tracks cancer-related statistics.

(L to R): Jennifer, Olivia, Casey, Anne, and Sharon talk about a number of initiatives to help patients with stage 4
breast cancer. This marked the final meeting for Team Texas, who came out to Washington, D.C. for METAvivor's "Stage IV Stampede." Photo by Olivia Suarez

Final Thoughts

The author in downtown Washington, D.C.
Photo by Stefany io. Visuals
I left Capitol Hill extremely satisfied with how the day played out. Last year’s Stage IV Stampede will always hold a special place in my heart because it was a new experience for me. But this year, having that experience under my belt, I was more confident about addressing issues affecting MBC patients and their loved ones. I empathized even more with the stories of other patients. The grief I have from losing my grandma to stage 4 breast cancer still lingers, but it’s allowed me to fight for something greater than myself.

I wish my grandma never got sick. I wish she was still here to live out the rest of her days. But had this tragedy not happened, I never would have learned about METAvivor, I never would have gone to D.C. (twice!) and met with congressional staff. I never would’ve met the amazing women battling MBC or advocating for a cure – friendships I will always cherish.

I can only hope that one day, stage 4 survivors get what I believe they deserve – more funding, more visibility… and more time to live. Until then, we must keep fighting.

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

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