A few years ago I was invited by Theresa’s Research Foundation to give one of the patient advocate welcomes at its conference in Utah. There is so much to say when you are talking to other cancer patient advocates, particularly when these advocates are primarily living with Stage IV cancer and there are cancer researchers in the room.
I remember this short welcome well because it was so difficult to compose. At the time, I’d been living with metastatic breast cancer for nearly seven years and had lost close friends to the same disease and even more friends known through online communities. These losses are always weighing on me. It’s impossible to get distance and relief because the deaths don’t stop.
I wanted to focus on how patient advocates were at this meeting thanks to the outspoken and fearless advocates who had seen that our voices were missing from the picture. The research, the treatments and our lives could be better. But also many of their voices had been lost due to metastatic breast cancer.
I’m thinking about this right now because of my involvement in a small group of advocates (and an impressive medical advisory board) led by Anne Loeser. The Patient-Centered Dosing Initiative can be credited with bringing cancer drug dosing into the spotlight. After Anne presented the impressive PCDI patient survey data on-stage at the American Society of Clinical Oncology (ASCO) meeting in Chicago, it was like the dam broke and suddenly everyone was talking about how to do better for people who are on treatment for the rest of their lives. There is a lot of information on our website, therightdose.org, and though I could go on and on about what it has achieved and where it is going, that’s not what I want to tell you about.
On October 10th, Anne died months after stopping treatment for MBC. Her time in hospice care allowed her to regain weight and strength. She would text me pictures of places she was visiting in Salt Lake City to remind me that the state had beauty outside of Moab, which she knew I loved. Her friends came to visit and she got to spend quality time with her husband and her beloved bird (Many people in the metastatic breast cancer community know Anne through her memorable online name, BestBird).
She also continued the work with the PCDI and sought to find a home to continue her regularly updated and important guidebook to metastatic cancer, The Insider’s Guide to Metastatic Breast Cancer. This book, read by thousands throughout the world, came about because Anne was misdiagnosed for four years prior to her MBC diagnosis. She was, as Anne herself wrote, “Determined to help others learn more about the disease and avoid diagnostic pitfalls.”
Anne’s impact on patients is immeasurable. She shared her research in the hopes of improving our lives. She wanted to reach as many people as possible in and out of the breast cancer community.
Working with her was to experience something special in advocacy.
Anne was kind and determined, productive yet understanding when others couldn’t keep up. When she talked with me, her attention always kept me at the center. It is quite an experience to have someone with all of Anne’s qualities focused on lifting you up.
In the past few years, we’ve lost too many leaders whose shoulders carried us. Anne both carried and led us, showing people that patients can affect how treatments are developed, how we can be partners and even more in our care and that staying true to what you want to say and how you want to live is the greatest gift you can give yourself.
I don’t often write about the people we lose in the metastatic breast cancer community. But I hope you take the time to look at the PCDI website, to look at Anne’s bio on the MBC Alliance site and to think about how one strong person can shape so much.
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