[BEST OF] Robots In My Head: Deep Brain Stimulation (EP298 Rerun)

Finding your voice while navigating a cancer diagnosis is not always easy, but self-advocacy can be a game changer. Advocating for education, research, and funding can drastically change outcomes, and often, it is the voices of those who have experienced health disparities first-hand that impact institutional change. Follow the stories of Montessa Lee, Rayanne Lehman, and Maida Mangiameli as they share moments of strength, wisdom, and advocacy from their journeys with Small Cell Lung Cancer. While there is still no cure for SCLC, there are new screenings and treatments and new reasons to be hopeful.

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“Get your affairs in order” was the advice from one ER doctor to Rayanne Lehman upon seeing her chest X-Ray. That was 4 years ago. When Maida Mangiameli received her Small Cell Lung Cancer diagnosis she wanted to live to know her newborn grandchild and that child is now 6 years old. And for patient Montessa Lee, her Small Cell Lung Cancer (SCLC) diagnosis 16 years ago has led her to a lifetime of advocacy work for lung cancer research, funding and education along with a commitment to being a voice for the voiceless. These lung cancer success stories are not only hopeful but through their journeys, these three patients and their caregivers have gathered a wealth of information and insight to share with others.

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In this series finale, we meet Maimah Karmo, President and CEO of the Tigerlily Foundation, and learn about her journey to end disparities for young breast cancer patients of color. If you like this series, be sure to subscribe, leave a rating a review, share on social media, and please tell your community to check it out.

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In this episode, we meet breast cancer advocates and users of #BCSM, Liza Bernstein, Anne Marie Mercurio, Christine Hodgdon, and Julia Maues. We find out how they got involved in #BCSM and how they utilized the hashtag to further their advocacy. If you like this series, be sure to subscribe, leave a rating, a review, share on social media, and please tell your community to check it out

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Breast Cancer Social Media (#BCSM) is an online community dedicated to empowering those affected by breast cancer. #BCSM began in 2011 as a conversation on Twitter and has grown into a world of support, guidance, and reliable information. In this episode, we meet breast cancer survivors and co-moderators of #BCSM, Alicia Staley and Jody Schoger. We also find out how Dr. Deanna Attai got involved in the online patient community.

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The fight for equitable healthcare goes to Congress. Plus, we meet the next generation of breast cancer activists. 

Relevant Resources: 

Leslie’s Week 

METAvivor - Political advocacy work  

Tigerlily Foundation - Political Advocacy Work

Tigerlily Foundation - RAISE

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Because of years of being delayed, dismissed, and denied, metastatic patients have had to become the experts in their own care. With the help of doctors and researchers, these patients are now changing the healthcare system from the inside out. 

Relevant Resources:

Tigerlily Foundation - Barriers Toolkit

Storm Riders Network - Christine’s Database for Clinical Trials

The BECOME Project - Stephanie Walker’s Study 

Trials of Color - Sharon Riveria-Sanchez’s Org

METAvivor - Research - Exciting MBC research made possible by METAvivor grants

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For decades, only one type of patient has been represented in the breast cancer awareness movement. In this episode, we learn the consequences of this representation gap and meet patients who are flipping the script.

Relevant Resources: METAvivor - Health Disparities in MBC 

Tigerlily Foundation - Barriers Toolkit

Tigerlily Foundation - My Life

Shonte Drakeford - My Life, My Legacy  

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Following the 2023 Healthcare Burnout Symposium, returning champion Dr. Gabe Charbonneau (CEO at Medicine Forward) is joined live in the studio with Dr. Todd Otten (COO at Medicine Forward) for a frank and candid conversation about the state of the state as it pertains to their grassroots movement, "Fight Burnout." Primary care is at the epicenter of clinician burnout, and positive change is happening, yet where we are blind is that there is still quite a bit of stigma about burnout. Today's extraordinary human conversation delves deep into the critically understated issues of moral injury, including how Hippocrates-driven providers receive the support and care they need to live their lives while saving lives in the process. Learn more about the Fight Burnout movement at https://www.fightburnout.org.

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The Wayback Machine was in full force today when my buddy Darren Petronella dropped by the studio for an IRL nostalgia-driven, GenX-themed episode about aging gracefully and our modern-day "Get Off My Lawn" grievances about life, the universe, and everything. Darren and I first met while undergraduates at SUNY Binghamton, with a common thread being musical theater nerds. His claim to fame, says me, was his epic rendition of "Corner of the Sky" from Pippin, and who knew all these years later, we'd meet up in person, and it would be like we'd not missed a day in over 30 years. Oh yes, and healthcare shenanigans abound. Enjoy the show.

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