https://www.podbean.com/media/share/pb-y8phs-1b72e1b

A new test result shows up in MyChart, and my doctor hasn’t called yet. Sound familiar? In this episode, I share three recent experiences with that gap: a heart scan that took too long, a PET scan that came back fast, and an eyelid biopsy where my 11-year-old understanding of one pathology term had me worried for nothing. I cover why federal law sends results to your portal first, what research says about patients seeing results early, and why Google and AI can’t fill in the context your care team can. Plus, a few practical ways to handle the wait before your next results land.

https://www.podbean.com/media/share/pb-3wxze-1b64864

Choosing your FSA amount during open enrollment is harder with a chronic illness or incurable cancer. That turns the annual benefits form into a forecast of my own health. This episode covers how I estimate medical expenses and why I fund for a stable year instead of the worst case.

https://www.podbean.com/media/share/pb-va4bk-1b4f471

Rare lymphomas are hard to build an awareness campaign around — and a global awareness day does matter. Why one day of visibility does what three thousand patients a year can’t do alone.

https://www.podbean.com/media/share/pb-zjknk-1b4643a

This episode is about telling clients, partners, and vendors about a cancer diagnosis. I share how I read someone before I decide, what I actually say, and why I still wonder whether I say too much.

https://www.podbean.com/media/share/pb-h4vcf-1b38f6b

Most people with mycosis fungoides spend 2–6 years being told it’s “just eczema.” I wasn’t one of them. And it wasn’t because I got biopsied early (I did, and it was wrong). I got diagnosed in 4–6 months because I accidentally landed with a dermatologist who knew what to look for, chose the right biopsy site, and knew that early biopsies often can’t confirm it. In this episode, I walk through what usually goes wrong, what happened in my case, and the four obstacles that keep this disease hidden.

https://www.podbean.com/media/share/pb-nkc2f-1b25f4c

A patch showed up on my lower eyelid practically overnight. Itchy, red, scaly — and it could have been almost anything.

Having mycosis fungoides doesn’t make you immune to ordinary skin problems. It just turns every ordinary skin problem into a question. And answering that question takes months.

This episode is the process. The steroid that did nothing. Four weeks of topicals that did nothing. A biopsy on my eyelid. Seven days of waiting. And the answer I already expected, which changed things anyway.

I don’t have the ending yet. I’m telling you anyway.

https://www.podbean.com/media/share/pb-t3bkx-1b05891

Most hard things come with a finish line — six rounds, twelve weeks, “get through this and you’re on the other side.” I don’t get that sentence. My treatment doesn’t end; it just continues, for as long as my body needs it. This episode is about treatment fatigue, not the kind where one appointment is brutal, but the kind where the hard part is the forever of it. And how I’ve learned to carry that without letting it stop me.

https://www.podbean.com/media/share/pb-32epj-1b0578e

When you treat a cancer that can’t be cured, you don’t just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

https://www.podbean.com/media/share/pb-azswi-1ae6bed

150 in-office treatment appointments in a single year. 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.

https://www.podbean.com/media/share/pb-7szd4-1ad5a45

What does it actually look like to walk into a state legislature and fight for rare disease patients? This episode, I share what I learned from two days advocating at the NC Legislature with the Everylife Foundation for Rare Diseases — what surprised me about how state lawmakers think, why the knowledge gap isn’t what I expected, and what a single staffer’s comment about a stack of one-pagers taught me about what advocacy actually requires. Plus: three NC bills that still need your voice.