June 24, 2025 • 8 mins
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.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
You look fine, but you're notfine. And that's exactly what
we're here to talk about.Welcome to Fine, But Not Fine,
the podcast about navigatingrare disease health care battles
and the messy reality of chronicillness. I'm Kelly, Paul, and
I've been living with MycosisFungoides since 2015. This is a
(00:22):
space for real talk, realexperiences and practical
advice, because surviving is onething, but figuring out how to
actually live, that's the hardpart.
Hey everyone and welcome back.You know, some of the things
(00:43):
this podcast is about, thevariety of episodes is really
about the big things, you know,nightmares with insurance, the
side effects of treatments, howto handle people that say kind
of crazy or ridiculous thingswhen you have cancer or a rare
chronic illness, but today'sepisode, I'm going small, and
(01:06):
I'm going really small, and it'sso small, honestly, that it
surprised me how much itmattered.
It's about a bath, not asymbolic bath, but a literal,
actual hot bath, and what itmeant to not be able to take one
for more than a year, and whatit meant when I finally could.
(01:28):
So, let me set the scene alittle bit. I am not someone who
loves summer heat. I live in thesouth, and I will complain about
the heat when I'm walking to mycar 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 mea sauna, a steam room, a hot tub
(01:52):
or a deep, hot bath, and I am inthat kind of heat, the kind that
I choose, that I step in onpurpose. That is my thing.
And there's something aboutsinking into warm water that
immediately shifts my nervoussystem. My breath slows, my
(02:14):
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
(02:40):
and indulgent in the very bestway, and they make me feel like
I'm taking care of myself andnot just managing myself, which
is why losing them hit so hard.
For more than a year, I've hadfour patches of lymphoma on my
left leg, each about the size ofa baseball. And there are some
(03:02):
smaller parts that go down tothe top of my foot and in
between my toes. We're talking alot of real estate here. And
they weren't just discolored ordry. They were open, raw,
weeping and often bleeding. Andmost days, they itched in a way
I would not wish on my worstenemy.
And when people think aboutcancer, they often think about
(03:25):
fatigue, nausea, hair loss. Youknow, the symptoms and side
effects people shared becausethey couldn't hide it. But my
particular kind, Mycosis,Fungoides, a Cutaneous T cell
lymphoma, mostly presents on theskin, and that means that
something as seemingly harmlessas water can kind of feel like a
(03:45):
weapon.
Hot water on these patches was,I imagine, like pouring acid on
a sunburn. And I'm not beingoverly dramatic here, it was
bad. The pain would start withinseconds. Then came the itch,
then came the tears, because Icouldn't stop scratching, and I
couldn't sit still withoutfeeling like my skin was
(04:07):
screaming.
So, I stopped taking baths. Ididn't put it on a list of
things cancer has taken, but Istopped. I let it go. I just do
quick showers and keep my leg asdry as possible. And that right
there, that quiet giving up ofsomething you love without even
realizing how much you loved itis one of the sneakiest ways
(04:30):
chronic illness can change you.
Fast forward to now. I have beenon a treatment called Pegasys
Interferon for about eightweeks, and this is an injectable
medication I give myself once aweek. It, like most medications,
comes with an abundance of sideeffects, and it is not a miracle
(04:51):
drug, but it is helping me. Mypatches are still there, but
they're smaller, they're lessinflamed. They're less. Is
angry. They're not completelyhealed, but they are no longer
open and they are not weepinganymore.
I can sleep without waking up inthe middle of the night to
(05:11):
scratch myself bloody, and thisweek, I looked down at my leg
and thought, maybe, just maybe Icould try a hot bath.
So, I ran the water hot just theway I like it. And unlike any
(05:56):
And the second, my bodysubmerged and I realized I was
dermatologist would tell you todo. I popped in a smidge of bath
okay. I actually started to cry,and that part was unexpected. I
figured I'd be happy, but Icried, and I guess it's because
I hadn't realized how much Imissed it, how much it mattered,
(06:19):
how much I had adjusted to nolonger having the experience of
a hot bath, and there I wassoaking in hot water and feeling
like me.
I think that when one lives witha chronic illness, especially
one that's rare, people expectthe big moments to be the
oil, something gentle andunscented, because my skin still
(06:42):
emotional ones, a new diagnosis,a scan result or a major
procedure, and they are butsometimes it's the little
moments that hit the hardest, abath, a night without pain,
scratching and bleeding.
These, these are the moments noone sees, no one celebrates, and
(07:03):
often no one even knows they'regone. But we feel their absence,
we adjust, we grieve quietly. Westop doing things that used to
needs care, and then I climbedin slowly, bracing for that
bring us joy, because it'seasier than experiencing that
they now bring us pain, and weare really lucky, really lucky
(07:25):
if we get one back.
And when it happens, I think wehave to let it matter. We have
to feel it, name it, celebrateit, cry in the bathtub, if
that's what the moment callsfor, because in life, where so
many things are out of ourcontrol. Joy, even small,
(07:47):
unexpected, watery joy, deservesour full attention.
familiar sting, but it did notcome, no searing pain, no sudden
So maybe you're listening andthinking about your own bathtub
moment, the thing you stoppeddoing without realizing how much
it mattered, the ritual orroutine or small comfort that
disappeared while you were busyjust trying to cope. It could be
(08:11):
a pedicure or a yoga class orpublic 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'llsee you next time. Thanks for
overwhelming itch, just warmthand comfort.
listening to Fine, But Not Fine.If this episode resonated with
(08:32):
you, subscribe so you don't misswhat's next. And if you got a
story question or just need tovent, reach out. I'd love to
hear from you until next time,take care and keep on going.
You look fine, but you're notfine. And that's exactly what
we're here to talk about.Welcome to Fine, But Not Fine,
the podcast about navigatingrare disease health care battles
and the messy reality of chronicillness. I'm Kelly, Paul, and
I've been living with MycosisFungoides since 2015. This is a
(00:22):
space for real talk, realexperiences and practical
advice, because surviving is onething, but figuring out how to
actually live, that's the hardpart.
Hey everyone and welcome back.You know, some of the things
(00:43):
this podcast is about, thevariety of episodes is really
about the big things, you know,nightmares with insurance, the
side effects of treatments, howto handle people that say kind
of crazy or ridiculous thingswhen you have cancer or a rare
chronic illness, but today'sepisode, I'm going small, and
(01:06):
I'm going really small, and it'sso small, honestly, that it
surprised me how much itmattered.
It's about a bath, not asymbolic bath, but a literal,
actual hot bath, and what itmeant to not be able to take one
for more than a year, and whatit meant when I finally could.
(01:28):
So, let me set the scene alittle bit. I am not someone who
loves summer heat. I live in thesouth, and I will complain about
the heat when I'm walking to mycar 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 mea sauna, a steam room, a hot tub
(01:52):
or a deep, hot bath, and I am inthat kind of heat, the kind that
I choose, that I step in onpurpose. That is my thing.
And there's something aboutsinking into warm water that
immediately shifts my nervoussystem. My breath slows, my
(02:14):
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
(02:40):
and indulgent in the very bestway, and they make me feel like
I'm taking care of myself andnot just managing myself, which
is why losing them hit so hard.
For more than a year, I've hadfour patches of lymphoma on my
left leg, each about the size ofa baseball. And there are some
(03:02):
smaller parts that go down tothe top of my foot and in
between my toes. We're talking alot of real estate here. And
they weren't just discolored ordry. They were open, raw,
weeping and often bleeding. Andmost days, they itched in a way
I would not wish on my worstenemy.
And when people think aboutcancer, they often think about
(03:25):
fatigue, nausea, hair loss. Youknow, the symptoms and side
effects people shared becausethey couldn't hide it. But my
particular kind, Mycosis,Fungoides, a Cutaneous T cell
lymphoma, mostly presents on theskin, and that means that
something as seemingly harmlessas water can kind of feel like a
(03:45):
weapon.
Hot water on these patches was,I imagine, like pouring acid on
a sunburn. And I'm not beingoverly dramatic here, it was
bad. The pain would start withinseconds. Then came the itch,
then came the tears, because Icouldn't stop scratching, and I
couldn't sit still withoutfeeling like my skin was
(04:07):
screaming.
So, I stopped taking baths. Ididn't put it on a list of
things cancer has taken, but Istopped. I let it go. I just do
quick showers and keep my leg asdry as possible. And that right
there, that quiet giving up ofsomething you love without even
realizing how much you loved itis one of the sneakiest ways
(04:30):
chronic illness can change you.
Fast forward to now. I have beenon a treatment called Pegasys
Interferon for about eightweeks, and this is an injectable
medication I give myself once aweek. It, like most medications,
comes with an abundance of sideeffects, and it is not a miracle
(04:51):
drug, but it is helping me. Mypatches are still there, but
they're smaller, they're lessinflamed. They're less. Is
angry. They're not completelyhealed, but they are no longer
open and they are not weepinganymore.
I can sleep without waking up inthe middle of the night to
(05:11):
scratch myself bloody, and thisweek, I looked down at my leg
and thought, maybe, just maybe Icould try a hot bath.
So, I ran the water hot just theway I like it. And unlike any
(05:56):
And the second, my bodysubmerged and I realized I was
dermatologist would tell you todo. I popped in a smidge of bath
okay. I actually started to cry,and that part was unexpected. I
figured I'd be happy, but Icried, and I guess it's because
I hadn't realized how much Imissed it, how much it mattered,
(06:19):
how much I had adjusted to nolonger having the experience of
a hot bath, and there I wassoaking in hot water and feeling
like me.
I think that when one lives witha chronic illness, especially
one that's rare, people expectthe big moments to be the
oil, something gentle andunscented, because my skin still
(06:42):
emotional ones, a new diagnosis,a scan result or a major
procedure, and they are butsometimes it's the little
moments that hit the hardest, abath, a night without pain,
scratching and bleeding.
These, these are the moments noone sees, no one celebrates, and
(07:03):
often no one even knows they'regone. But we feel their absence,
we adjust, we grieve quietly. Westop doing things that used to
needs care, and then I climbedin slowly, bracing for that
bring us joy, because it'seasier than experiencing that
they now bring us pain, and weare really lucky, really lucky
(07:25):
if we get one back.
And when it happens, I think wehave to let it matter. We have
to feel it, name it, celebrateit, cry in the bathtub, if
that's what the moment callsfor, because in life, where so
many things are out of ourcontrol. Joy, even small,
(07:47):
unexpected, watery joy, deservesour full attention.
familiar sting, but it did notcome, no searing pain, no sudden
So maybe you're listening andthinking about your own bathtub
moment, the thing you stoppeddoing without realizing how much
it mattered, the ritual orroutine or small comfort that
disappeared while you were busyjust trying to cope. It could be
(08:11):
a pedicure or a yoga class orpublic 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'llsee you next time. Thanks for
overwhelming itch, just warmthand comfort.
listening to Fine, But Not Fine.If this episode resonated with
(08:32):
you, subscribe so you don't misswhat's next. And if you got a
story question or just need tovent, reach out. I'd love to
hear from you until next time,take care and keep on going.
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