In this episode, I discuss the impact of chronic illness on daily life, focusing on the emotional significance of small pleasures. I share my experience with Mycosis Fungoides, a rare skin lymphoma, and how it affected my ability to enjoy something as simple as a hot bath.

After more than a year of painful patches and (finally!) eight weeks of treatment with Pegasys Interferon, my condition improved, allowing me to take a hot bath again. This simple act brought me unexpected joy and highlighted the importance of recognizing and celebrating small victories in managing chronic illness.

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
4. The Mycosis Fungoides Rule Out – Ep. 35 19:32
5. Treatment Fatigue: Doing the Hard Thing Forever With No Finish Line – Ep. 34 08:30

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.

Surprise at How Much Small Things Matter with Chronic Illness

Hey everyone and welcome back. You know, some of the things this podcast is about, the variety of episodes is really about the big things, you know, nightmares with insurance, the side effects of treatments, how to handle people that say kind of crazy or ridiculous things when you have cancer or a rare chronic illness, but today’s episode, I’m going small, and I’m going really small, and it’s so small, honestly, that it surprised me how much it mattered.

For Me, it’s all About a Hot Bath

It’s about a bath, not a symbolic bath, but a literal, actual hot bath, and what it meant to not be able to take one for more than a year, and what it meant when I finally could.

So, let me set the scene a little bit. I am not someone who loves summer heat. I live in the south, and I will complain about the heat when I’m walking to my car in July or standing in line for an outdoor event in August. I am not trying to bake or steam while fully clothed, but give me a sauna, a steam room, a hot tub or a deep, hot bath, and I am in that kind of heat, the kind that I choose, that I step in on purpose. That is my thing.

And there’s something about sinking into warm water that immediately shifts my nervous system. My breath slows, my brain goes quiet, my shoulders, which sometimes feel like they’re up near. My ears, finally drop. It’s like my body says, “Oh, finally.”

Baths been my go to for stress, for sore muscles, for anxiety, for just feeling human again. They’re private and comforting and indulgent in the very best way, and they make me feel like I’m taking care of myself and not just managing myself, which is why losing them hit so hard.

Large, Weeping, Bleeding Pathces of Mycosis Fungoides

For more than a year, I’ve had four patches of lymphoma on my left leg, each about the size of a baseball. And there are some smaller parts that go down to the top of my foot and in between my toes. We’re talking a lot of real estate here. And they weren’t just discolored or dry. They were open, raw, weeping and often bleeding. And most days, they itched in a way I would not wish on my worst enemy.

Seemingly Harmless Water was Weaponized

And when people think about cancer, they often think about fatigue, nausea, hair loss. You know, the symptoms and side effects people shared because they couldn’t hide it. But my particular kind, Mycosis, Fungoides, a Cutaneous T cell lymphoma, mostly presents on the skin, and that means that something as seemingly harmless as water can kind of feel like a weapon.

Hot water on these patches was, I imagine, like pouring acid on a sunburn. And I’m not being overly dramatic here, it was bad. The pain would start within seconds. Then came the itch, then came the tears, because I couldn’t stop scratching, and I couldn’t sit still without feeling like my skin was screaming.

What We Often Do is Stop Doing Things We Used to Love Because it Now Hurts

So, I stopped taking baths. I didn’t put it on a list of things cancer has taken, but I stopped. I let it go. I just do quick showers and keep my leg as dry as possible. And that right there, that quiet giving up of something you love without even realizing how much you loved it is one of the sneakiest ways chronic illness can change you.

New Mycosis Fungoides Treatment. Old Opportunities.

Fast forward to now. I have been on a treatment called Pegasys Interferon for about eight weeks, and this is an injectable medication I give myself once a week. It, like most medications, comes with an abundance of side effects, and it is not a miracle drug, but it is helping me. My patches are still there, but they’re smaller, they’re less inflamed. They’re less. Is angry. They’re not completely healed, but they are no longer open and they are not weeping anymore.

I can sleep without waking up in the middle of the night to scratch myself bloody, and this week, I looked down at my leg and thought, maybe, just maybe I could try a hot bath.

Who Knew a Hot Bath Could Make Me Cry?

So, I ran the water hot just the way I like it. And unlike any dermatologist would tell you to do. I popped in a smidge of bath oil, something gentle and unscented, because my skin still needs care, and then I climbed in slowly, bracing for that familiar sting, but it did not come, no searing pain, no sudden overwhelming itch, just warmth and comfort.

And the second, my body submerged and I realized I was okay. I actually started to cry, and that part was unexpected. I figured I’d be happy, but I cried, and I guess it’s because I hadn’t realized how much I missed it, how much it mattered, how much I had adjusted to no longer having the experience of a hot bath, and there I was soaking in hot water and feeling like me.

With Chronic Illness it’s the Little Moments that Hit the Hardest

I think that when one lives with a chronic illness, especially one that’s rare, people expect the big moments to be the emotional ones, a new diagnosis, a scan result or a major procedure, and they are but sometimes it’s the little moments that hit the hardest, a bath, a night without pain, scratching and bleeding.

These, these are the moments no one sees, no one celebrates, and often no one even knows they’re gone. But we feel their absence, we adjust, we grieve quietly. We stop doing things that used to bring us joy, because it’s easier than experiencing that they now bring us pain, and we are really lucky, really lucky if we get one back.

And when it happens, I think we have to let it matter. We have to feel it, name it, celebrate it, cry in the bathtub, if that’s what the moment calls for, because in life, where so many things are out of our control. Joy, even small, unexpected, watery joy, deserves our full attention.

What are Your Bathtub Moments?

So maybe you’re listening and thinking about your own bathtub moment, the thing you stopped doing without realizing how much it mattered, the ritual or routine or small comfort that disappeared while you were busy just trying to cope. It could be a pedicure or a yoga class or public pools or a bath. I hope you find your way back to it, and when you do, I hope it’s as good as you remember.

Thanks for listening, and I’ll see you next time. 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 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.