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.
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Mrs. Estela Shimanek, the author's late grandmother. Photo by Olivia Suarez |
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.
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(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 |
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).
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(L to R): Sharon, Sheerine, and Olivia pose for a selfie after meeting in Rep. Sheila Jackson Lee's office. Photo by Olivia Suarez |
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.
Final Thoughts
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The author in downtown Washington, D.C. Photo by Stefany io. Visuals |
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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