In this episode, I share a recent experience that was far more than “scanxiety.” After a routine check-in revealed rapidly spreading skin patches, extreme fatigue, drenching sweats, and liver numbers that tripled in four weeks, my doctor paused my treatment and ordered a PET/CT scan to see if my Mycosis Fungoides had spread internally.

I walk you through the fear that set in—fear that felt different from worry—plus what it’s like to go through the process at Duke’s Cancer Center, from prep instructions and quirky waiting room details to the barium drink, the big scanner “donut,” and even the surprising Carolina-blue ceiling panel. Most of all, I talk about how it felt to sit in that space, knowing that the results could change my life in an instant.

High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 – The Fine, But Not Fine Podcast

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.

1. High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 13:25
2. 150 Appointments: What Rare Disease Treatment Actually Costs – Ep. 32 10:01
3. Two Days in the Halls of Power – Ep. 31 20:41
4. Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30 08:06
5. Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29 09:26

Podcast Transcript

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, health care 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.

I want to talk with you about scans and not just that phrase, scanxiety, that word, right? I want to talk about something a heck of a lot heavier. I want to talk about fear, the kind of fear that sinks into your bones when you are faced with the worst possibilities.

When a Routine Lymphoma Check-In Turns Serious

So, it started with what was supposed to be a routine check-in, but the patches on my skin were spreading quickly and pushing me towards the edge of my current staging. I’m at stage 1A, and I have now moved into stage 1A Max, 1Max.

Symptoms That Raised Red Flags

I had incredible fatigue, that bone deep kind of fatigue, and y’all, I had been sweating like I’d run a marathon in the middle of August, and I have not been running any marathons. It has been hot here, but it hasn’t been so hot that there’s a justifiable reason for me to sweat completely through all of my clothing.

A Critical Decision: PET/CT Scan Ordered

Then came the labs, my liver numbers, the ALT, had tripled in just four weeks. So, my doctor doing what any good doctor should paused my current treatment, which is Pegasys Interferon, and ordered a combo PET/CT scan. The question was whether my cancer, Mycosis Fungoides, had spread internally, or if my body had decided to attack my liver.

Now, let’s be honest, I know the cancer I have is incurable, but as long as it stays on my skin, my lifespan is not drastically impacted. The moment it spreads inside, everything changes dramatically. So, while the best possible outcome was still the treatment stopped working and was raising my liver numbers. The other options, they were far worse.

Entering the Cancer Center Building

So the scan was scheduled for really a little bit longer than a week after that appointment at the Duke Cancer Center. Now I live close by, so that is completely what I expected. But there’s one thing -I don’t usually go to the cancer center. Because even though I have cancer, my treatment is done through dermatology, through a specialist in Cutaneous T-cell lymphoma. So stepping into that building, that cancer center, it was like stepping into a new category of patient.

I got there early because I am a chronic early arriver, and because I knew I’d need time to steady myself. And I did. I sat there in one of the chairs leaking tears, trying to calm my full body panic. My husband came with me, which helped more than I can say, but that fear was still there. And that space, as nice as it is, it made it real.

Observations in the Waiting Room

Now in the waiting room, I noticed everything art on the walls. One of the first things I said to my husband was there’s no sign saying who made it, donated it, or funded it. And then he did find one, but it’s just one of those things I noticed. And then there were these odd and incredibly long regulatory notices printed and pasted to the wall above the chairs that people were sitting in, and, like, super tiny print, like, couldn’t have been size ten font, right? I mean, who’s supposed to stand there for like, 10 minutes at a time and read those while they’re like, hovering over who might be sitting in a chair?

Prepping for the Scan

So once called back, I got settled into a small, private room with a recliner, one of those hospital style recliners, and my husband was allowed to come back with me. It kind of surprised me, and I actually appreciated that.

The nurse had a rough go getting my IV started. It took a few tries, but I wasn’t bothered by it. You know, we all have one of those days. And honestly, I was probably more worried for her being upset about it than for me getting poked. I’m just not overly concerned about that.

And then there was another nurse, tech who took over and explained everything. He was super helpful and kind. Explained how timing was important, that they had to sync the radioactive tracer with scan availability. And then came the injection, right? The radioactive tracer, which is an FDG, like Frank Dog Ground, which helps highlight potential cancer activity. And, of course, the infamous barium drink, you know, 450 milliliters of thick sweetness, and the tech swore banana was the best option, so I went with that. I have nothing to compare it to, but it is what it is. And I am one of those people who finds flavoring medications kind of ruins the real flavor. But I drank what I needed to drink, but I’m probably going to pass on eating bananas for a few weeks.

Scan Wardrobe and Comfort Tips

So wardrobe, because there are some requirements when you go in for a scan, no metal, no snaps, zippers, buttons. So I wore leggings, a t-shirt and no-wire sports bra, no jewelry. Basically, comfort meets compliance. I did bring a sweatshirt, but I really didn’t need it, because they gave me a warm blanket so I wouldn’t be cold during the scan. And those machines are huge, and they generate a whole lot of heat and need to be kept cool to operate properly. So you want to plan for the fact that that room is going to be freezing cold. And note, I wore a black T shirt. I had blanket fuzz everywhere when I left.

Inside the PET/CT Room

When it was my turn to go into the scan, my husband did have to go back to the waiting room, so I was led by another technician into the scan room, and it was big and the scanner was big. The machine is often described as a donut, but let me be clear, it’s a tube, okay, and it’s a snug one. I’m not bothered by that kind of space, but if you are, it would be worth talking with your doctor about it if you’re facing a scan. I pretty much just closed my eyes and tried to take advantage of being completely out of reach for everybody that I knew.

Now, they tried to make it comfortable. So when I walked in, they had what I would call nostalgic music playing. It was Take it Easy by the Eagles. And that really continued with whatever station they had running. The technician did position me on the table. Basically told me where to sit down and how to get on the table. And they placed like a chock, you know, chocks, or some sort of cushiony type thing under my knees. And then they had me grip handles that were behind my head so my arms were lifted up and elbows bent, and I was holding onto these handles that were behind my head so that my arms would be in the right position. And then they put, you know, cushions, chocks, kind of on the side where my arms and shoulder were to keep me still. I did take out my hearing aids and had the technician put them aside for me.

A Bold Carolina Blue Ceiling

And then, kind of a funny thing, I looked up and saw they had one of those scene panels in the light fixture above. Yeah, you probably know what I’m talking about. It’s and it was made to look like a bright Carolina blue sky with leafy and flowering spring branches overhead. Now let me pause here. I said Carolina blue. It’s Duke’s Cancer Center. It was a bold choice. Y’all bold, but I respect the audacity. And really it was calming. It made me smile, and It distracted me for a bit.

Now, the scan itself lasted about 25 minutes. It wasn’t crazy noisy, but then again, I wasn’t wearing my hearing aids.

A Pitch to Duke and Other Medical Centers

Now here’s where I make a pitch to Duke and other medical centers if you’re listening.
It would be awesome if you showed us patients exac tly what to expect. A short video, maybe of someone getting positioned in on the machine. You know, we walked into that room, the technician said, you can get on the machine. And it’s this long bed that’s, I don’t know, I’m making up the numbers, 10 feet long, and I’m like, well, where exactly do you want me to get on? And so he showed me.

You know, some photos of what the injection room is like, that you’ll be sitting in a comfortable chair, you know, this is what’s going to happen when you come in. Essentially, a step-by-step breakdown of what actually happens from the moment you check in to the moment you check out.

Because, listen, I was scared. I was petrified. I was about to find out that I was either not going to have a life ending reality, or I was going to have a life ending reality in a very short period of time. And part of that fear that also makes it difficult for a patient to go into that space is not knowing what to expect. I did not know what the room looked like. I did not know how I would be positioned or what would be expected of me. A little information can go an incredibly long way towards easing patient fear.

Finally, Food!

So after the scan was done, obviously, I got home, I ate. I did bring snacks and had them in the car in a cooler, so that I could eat immediately afterwards, because I was so nervous, y’all, I hadn’t eaten since, you know, something like, what, nine hours beforehand.

The Results

And then I was surprised, sitting at home on the couch, kind of like that part’s done. And then my results popped up in my chart four hours later. Y’all that’s like lightning speed in the medical world, and the results, holy cow, no internal spread, none. I mean seeing that, that’s what we all want to see when we have something like this done.

I do have a few lymph nodes to watch. I have a small spot on my shoulder that I kind of wonder if it’s the keloid scar tissue from a biopsy years ago. And I really do have some tiny watch list items that just aren’t worth chasing. They’re things to watch, right? And honestly, it was the absolute best outcome I could have hoped for. And to say I’m relieved, it just doesn’t even begin to describe it, I still tear up.

I Hope This Story Helps You

Okay, so if you’ve got a PET/CT scan, or any other scan coming up and you’re scared, I get it. It is okay to be terrified, but knowing the process, I hope what I went through and I’m sharing here, I’m hoping it will help calm you. For now, I’m grateful. I’m back in the treatment game. I’m still here. I’m still navigating this, and I’m still figuring out how to live, not just survive.

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.