150 in-office rare disease 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.

World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38 – The Fine, But Not Fine Podcast

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.

1. World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38 16:37
2. Did I Really Have to Say That? Disclosing a Cancer Diagnosis at Work – Ep. 37 20:03
3. Why Mycosis Fungoides Takes Years to Diagnose: What I've Learned – Ep. 36 31:23

Podcast Transcript – What Rare Disease Treatment Actually Costs

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine. The podcast about navigating rare disease, healthcare battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences, and practical advice. Because surviving is one thing, but figuring out how to actually live, that’s the hard part.

150. That’s the number. 150 in office treatment appointments in a single year. Not labs, not follow-ups, not the dermatologist visits where we talk about what’s working and what’s not. 150 times I drive to a medical facility, undress, stand in a light box, get dressed, and drive on to work.

What Rare Disease Treatment Actually Is

Let that sit for a second. Because I think when most people hear I’m in treatment, they picture something – chemo, an infusion, a prescription you pick up and take home maybe. They don’t necessarily picture a year where three days a week your calendar has a medical appointment that you cannot reschedule, cannot do remotely, and cannot reasonably skip without losing ground. This is that episode.

So, here’s the thing, I’ve talked before about the treatments that were working well for me, but as you well know, the body is complicated, and when you’re managing a disease like Mycosis Fungoides, sometimes the thing that’s treating the cancer creates a problem somewhere else. In my case, we had a liver response to one of my effective medications, and that’s Pegasys Interferon. And that meant stopping it, that meant a gap in treatment, because I needed to see a liver specialist and wait to figure out the next steps. But while I was in that waiting period, my skin didn’t just pause, the Mycosis Fungoides didn’t pause, so to fill that gap, to keep things as managed as possible, while we sorted out the liver situation, my care team sent me back to in-office narrow band UVB treatments, NBUVB, three times a week.

Home Equipment vs In-Office Equipment

Now, here’s where it gets interesting, for those of you who don’t know how this works. I do have home equipment for this. I have a home light box, and home equipment is genuinely great for maintenance, for keeping things stable once you’ve gotten somewhere good, or you know, maybe dealing with, you know, a sort of flare real quickly, and treating them. But for actually treating really active disease, and that’s what mine has been, really for minimizing patches and plaques to an acceptable space, the clinical grade equipment and clinical protocol at the doctor’s office is a little bit better. The home unit isn’t built to do what the office unit does, so fine.

Light Box Treatment Availability

Okay, back to the office now. Here’s the part that doesn’t show up in the treatment plan. There is no NBUVB light box at a dermatologist in the city in which I live. And there isn’t one in the city where I work that’s close enough to my work, either, and those are two different cities, which matters here.

My regular dermatologist, the one whom I see for everything but my MF now — he diagnosed my MF— is in Greensboro, and that’s where the equipment is, that’s where I go. So, on treatment days, three days a week my commute is not my normal 70 mile round trip, it’s 95 every treatment day for a year, and it’s not a complaint. Well, maybe it is a little bit of a complaint, but it is, it’s math, right? It’s the math of what treatment actually looks like when you live in a mid-sized city with a rare disease that requires specialized equipment.

Now, treatment at my dermatologist office is available from 7:40 in the morning until roughly 3:30 in the afternoon in half hour blocks, and there’s no Friday afternoon because they’re not open on Fridays afternoons anyway. And here is a detail that kind of captures the whole thing. There is only one time slot before 8am one, so if you have two people who have a need and they have a job that requires them to be at a place at a certain time, that can be a little bit complex.

Now I take the 8:10 slot, I can schedule that two weeks in advance, and then I have to schedule again. And I have a boss, I need to say this, and I want to be absolutely clear, is incredibly flexible, and that flexibility is not something I take for granted, and it is not something everyone has. I am completely aware of how much that matters, and because of that flexibility I can take that 8:10 slot and get to the office around 8:45 in the morning, which is 15 minutes past the start of our day. And I know most people do not have that option, and I really want you to hear that. I want you to sit with that for a minute.

Because the system that exists, the one where treatment is only available during a window of business hours, and it’s needed three times a week, requires a longer commute than your normal day, and assumes you have an employer that will workaround it 150 times a year. That system requires a very specific set of circumstances to function for a patient, and not everyone has those circumstances.

You want to know how long the actual treatment takes? Right now about one minute and 20 seconds. You heard that, one minute 20 seconds. I spend more time getting undressed and redressed than I spend in the light, and that’s the reality of, you know, phototherapy. The time in the box is calibrated precisely, it increases gradually over time as your skin responds, and at this point in my protocol, and with my fair skin, that’s where I am, 80 seconds, and it works. I want to be clear about that too. It works. That’s why I go. That’s why I make the drive. That’s why I take an 8:10am slot. That’s why I add the extra miles to my day, because it works. And managing this disease requires doing the things that work, even when they’re inconvenient, even when they’re expensive, even when they eat into your morning three days a week.

The Cost of Rare Disease Treatment

So, what does 150 appointments actually cost? There’s the obvious stuff, right? Time, gas, the 95 mile drive versus a 70 mile drive times 150. But there’s also really the less obvious stuff, right? Client availability, my work involves meeting with people, and three mornings a week, the window before I can be somewhere is narrower than it would be otherwise, and that’s a real thing that affects real decisions about scheduling, about relationships, and about how I show up professionally.

Our System’s Aren’t Built for Rare Disease Treatment & Working

And then there’s the question I keep coming back to, and it’s the one I don’t have a clean answer to. Whose job lets them do this? Seriously, think about that. Three appointments a week for a year at a facility that’s far away, and you have to drive there and drive back if you can’t get that first appointment of the day, because the last appointment of the day is not at the end of the day for most people with a nine-to-five job, right? What job accommodates that without consequence, and what job can?

I mean, I got incredibly lucky, I have a flexible employer, a job that can absorb some shifting and a schedule that bends. But I think about all these people who don’t have that. The people in hourly jobs or an inflexible office, or those without a car, or someone who lives somewhere where the nearest light isn’t, you know, 25 miles away, it’s 150 miles away. What does treatment look like for them? Does it even happen? I mean, that’s the access problem hiding inside the medical problem, and we need to name this loudly. 150 appointments in one year, a minute 20 plus each time, plus the commute, plus the scheduling, plus the mental overload of building your life around a medical calendar that does not pause.

This is what living with a chronic illness looks like on a Wednesday morning. It looks like leaving early, driving the long way, undressing in a medical office, you can stand in the light for less than two minutes, redress, and then get to work by 8:45 like it’s a normal day. Because it is a normal day, this is just what normal looks like now.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe, so you don’t miss what’s next. And if you’ve got a story, question, or just need to vent, reach out. I’d love to hear from you. Until next time, take care, and keep on going.