Jennie, A Steel Twig

I just returned from the San Antonio Breast Cancer Symposium, the most important breast cancer conference in the world held annually in the United States. Thanks to a scholarship from Advocates for Breast Cancer, a nonprofit organization founded and directed by Susan Zager, I had the opportunity to participate in this intense week of scientific presentations and, for me, many emotions. I plan to write about the scientific aspects of the Symposium, but I feel an urgency to tell you first about an extraordinary woman I met named Jennie Grimes.

jennie with met up bannerJennie grew up in Colorado but now lives in Los Angeles with her partner Connor and their dog Fala. She was diagnosed with breast cancer at the young age of 27. Three years later, her cancer became metastatic. Today, Jennie is 35 years old and her life is studded with cancer treatments (including chemotherapy) and the tough side effects that go along with them. Before she had cancer, Jennie worked for the AIDS Coalition to Unleash Power, a group whose mission is to end the AIDS pandemic through direct action. Relying on this experience she founded, together with another metastatic breast cancer activist from Seattle, Beth Caldwell, an organization called MET UP. The new organization focuses on finding a cure for the only form of breast cancer that kills, metastatic breast cancer. Ironically, METS is also the form of the disease that receives the least amount of attention in breast cancer advocacy and awareness.

Jennie’s body is a like a slender twig. I say this because five years of treatment for metastatic breast cancer have been exhausting. But tests done just a few days before she left for the Symposium (which she also attended thanks to the generosity of Advocates for Breast Cancer), show a progression of her disease. She will have to start another new treatment although it is unclear which one or for how long. Despite this, not even God can extinguish her commitment to activism.

Each day of the symposium, advocates on scholarship have a chance to take part in “Hot Topics Mentor Sessions” organized by the Alamo Breast Cancer Foundation. In these after-hours sessions, we hear from internationally leading experts on the key scientific issues discussed during the conference that day. Two microphones are positioned at the sides of the hall where the advocates, like good pupils who first listen to the opinions of the eminent clinicians, may then diligently pose their questions while sipping pink lemonade offered by the organizers.

On Thursday December 10th, the second day of the Symposium, Jennie stayed in her hotel in the afternoon due to her aggravating sickness. Wrapped in a black cardigan that made her look even thinner, she still showed up at the Hot Topics session that night to hear about the results of a study presented earlier that day on somatic mutations in primary and metastatic tumors. The research was conducted on samples of tissue from women who died of metastatic breast cancer and consented to having autopsies in the six hours after their deaths. Hot Topics presenter Hyman Muss, a professor at the University of Carolina Chapel Hill and director of the Geriatric Oncology Program at the Lineberger Comprehensive Cancer Center, praised their consent to participate in much needed research.

Jennie, last in the cue for Q&A, had a question. But when her turn came to speak the chairperson said time was up and no more questions could be asked.

Jennie is frail, it’s true, but she did not have the slightest intention to surrender to the announcement. “I have to ask my question now,” she exclaims grabbing the microphone to everyone’s astonishment, “because next year I could be dead!”

jennieJennie went on:

“Hi, my name is Jennie Grimes. I’m with MetUp, diagnosed with metastatic breast cancer at 30. As you mentioned tonight, many of these studies matter but won’t move the needle for treatment on Monday. But for those of us that have treatment on Monday. And the next Monday. And the next Monday, where is the hope in what you are seeing this week – aside from Rapid autopsies, which are great for science, but not great for the over 113 of us dying each day?”

Thunderous applause greeted Jennie’s questions to the eminent presenters who, in embarrassment, answered her by vaguely referring to the possibility that women might enlist in unspecified clinical trials, those same studies that time and again, year after year, women who have been treated for metastatic breast cancer are either no longer eligible or are too sick to withstand the new drugs.

What will this steel twig do then?

She will continue to ask questions, claiming her right to do so, with the hope that in a not too distant future people with mets will be offered not only “rapid autopsies” but also viable solutions.

Thank you, Jennie.

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