"Every day that I wake up and I don't have a new tumor, I'm adding to the survivorship data. So you have to live with a certain amount of uncertainty... I would like to curl up at night with a whole sheaf of data that doesn't exist yet, because I'm the one who's helping to create it." — Deborah
When we evaluate health metrics on a macro scale, we often treat long-term oncology survivorship as a finished equation — a simple box checked after a patient rings a bell. But the actual infrastructure of survival is far more complex, held together by human relationships, psychological boundaries, and systemic privileges.
In the conclusion of this special two-part feature, titled "The Elite Runner of Survivors," host Dr. Randi Paynter sits down with health sciences librarian Deborah to document the raw, unfiltered realities of long-term, advanced survivorship. After severe eye toxicities forced her to discontinue her dual combination targeted therapies (Tafinlar + Mekinist) in February 2020, Deborah walked off the edge of established clinical guidelines to navigate life as a true biological outlier.
In this episode, we move past the clinical trials to explore how families establish boundaries in a crisis, how we navigate profound grief and loss within a medical space, and how Deborah pivoted her entire career to train the next generation of healthcare providers.
We discuss:
• Parenting in a Crisis: The deliberate strategies Deborah used to protect her young sons from a climate of fear.
• The Epi Edit: The molecular science of V600 BRAF/MEK dual pathway inhibition and why combining toxic agents can paradoxically balance out specific side effects.
• The Phlebotomy Desk Bond: A tribute to Bakari, a nursing student from the Gambia whose tragic loss deeply impacted Deborah's care journey.
• The Career Transformation: How Deborah transitioned into academic health sciences librarianship, teaching medical and nursing students how to navigate evidence-based practice.
• Delivering Bad News: Reflecting on teaching medical students and the raw memory of finding out about her own diagnosis over the phone.
• The "Elite Runner" Deficit: What it actually feels like to cope with PTSD, survivor's guilt, and "scanxiety" when your clinic graduates you to annual MRIs.
-- Go to ChangedByCancer.com for show notes, resources, and links to Deborah's blog I'll Live
Resources mentioned:
• BRAF and MEK Pathway Inhibition: Subbiah V, Baik C, Kirkwood JM. Clinical Development of BRAF plus MEK Inhibitor Combinations. Trends Cancer. 2020 Sep;6(9):797-810. doi: 10.1016/j.trecan.2020.05.009. Epub 2020 Jun 13. PMID: 32540454. https://www.sciencedirect.com/science/article/pii/S2405803320301643
• The Breakthrough Documentary: https://www.uncommonproductions.com/breakthrough
• Deborah's Blog: I'll Live https://ill-live.com/
Changed By Cancer is hosted by Dr. Randi Paynter, a cancer epidemiologist. This podcast shares personal experiences and systemic issues in healthcare. It is not medical advice. Please consult your own medical team for health-related decisions.
