Archives
-
World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38
Transcript Four percent Today is September 15th, World Lymphoma Day. At least it is if you’re listening to this podcast on the actual day it drops. And really, roughly about […]
-
Did I Really Have to Say That? Disclosing a Cancer Diagnosis at Work – Ep. 37
Telling clients about a cancer diagnosis. How I decide who needs to know,w hat I say, and why I still wonder if its too much.
-
Why Mycosis Fungoides Takes Years to Diagnose: What I’ve Learned – Ep. 36
Mycosis fungoides typically takes years to diagnose. Mine took four months. What actually made the difference, and why it isn't something I can recommend.
-
The Mycosis Fungoides Rule Out – Ep. 35
How do you know if a new spot is mycosis fungoides? My eyelid biopsy, the 7-day pathology wait, and what happens next with cutaneous T-cell lymphoma.
-
Treatment Fatigue: Doing the Hard Thing Forever with No Finish Line – Ep. 34
How do you keep doing treatment when there's no cure and no finish line? On treatment fatigue, chronic illness, and building a life in the meantime.
-
High Liver Enzymes on Interferon: Why I Had to Stop Treatment
When interferon raised my liver enzymes, I had to stop cancer treatment and see a liver specialist. The waiting, the testing, and getting real answers.
-
150 Appointments: What Rare Disease Treatment Actually Costs, Ep. 32
150 in-office appointments in a single year for rare disease treatment. Three days a week, every week, driving to another city because there's no NBUVB light where I live — or where I work. In this episode I'm talking about what treatment actually costs: the miles, the time, the scheduling, the money. And the harder question underneath all of it — whose job actually lets them do this? Because not everyone has the flexibility I do. And that matters.
-
Two Days in the Halls of Power – Ep. 31
State legislators know rare disease exists. They don't know what it costs you to live with it. That's the gap — and how patients can fill it.
-
Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30
I share what it’s like meeting with lawmakers during Rare Disease Week and how patient advocates help move rare disease policy forward on Capitol Hill.
-
Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29
What really happens during Rare Disease Week? I share my experience advocating on Capitol Hill and why patient advocates are vital in shaping rare disease policy.