Episode Transcript
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Kelly Paul (00:01):
You look fine, but
you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoides since 2015. This is aspace for real talk, real
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experiences and practicaladvice, because surviving is one
thing, but figuring out how toactually live, that's the hard
part.
Hey there, and welcome back toFine, But Not Fine. Today I want
us to talk about my experiencewith Narrow Band. UVB, light
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therapy. NBUVB, how I started,how I adapted, and ultimately,
how I made it work for me. Andif you've ever had a long term
treatment that required aserious time commitment, you
probably understand how much itcan shape your daily life.
For me, it started with drivingto my doctor's office three
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times a week, but after a yearof that, I transitioned to a
home light unit, and I used thatfor another four years, which
was a total game changer. Oh,and along the way, I did somehow
manage to turn this wholeexperience into a laundry room
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makeover, because if I was goingto spend that much time in
there, it might as well looknice.
Now let's get into it. When Ifirst started Narrow Band UVB,
my dermatologist, as I mentionedearlier, had me coming into the
office three times a week fortreatment. Now, it wasn't
difficult, but it did requiresome planning. Scheduling was a
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little bit of a puzzle, and thisis because I could only book
appointments one month at atime, and the slots from month
to month, or even the dayswithin the week, the slots just
weren't always the same, andsince the office was only open
Monday through Friday, I reallykind of had to be strategic,
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because my treatments at thattime had to be spaced out with
at least one day in between. Sothere really wasn't much wiggle
room at all.
Now, the treatment itself wassimple. I'd check in, I would go
to a private room that was allset up for me, and this was the
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room that held the Narrow BandUVB equipment. I would lock the
door. I would undresscompletely. I would put on my
protective goggles, and they'relike you would see if you have
ever tanned in a tanning boothin your life, or seen that. I'd
pop in my airpods. I'd steppinto this walk-in light booth.
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It was six sided, and then Iwould turn it on.
And in the beginning, it startedwith literally just a few
seconds at a time. You know, itcould have been 15 seconds or 20
seconds, something like that.And it would gradually increase
with each session, because thisis light, it can burn you,
right?
So, the dosing was all managedby a medical professional, and
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in the beginning, the goal wasto increase the time I spent
until clearing was achieved. Sobasically, to see my patches on
my skin go away, and my reactionto it had to be monitored to
make sure, as I mentioned, Iwasn't getting burned. So like a
sunburn.
If I did get pink, and that'sreally difficult for me, because
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I'm a very pale and very pinkperson, if I did get pink, I
referred to it as being a littlebit crispy. And I would tell the
medical professional that was,you know, overseeing my care,
that I was a little crispy. Oreven sometimes I could walk in
and she'd be like, OH, we'returning the dose down, right.
And that dose would go down, andthat dose would hold at a lower
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level until my skin didn't looklike I'd been had a really bad
sunburn, essentially, and thenit would be appropriate to
increase it again and moveforward. And it worked really
well.
The staff was awesome at thedermatologist that I went to get
this done at. But you know, thetime commitment was, you know,
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it's a small amount of time inthe booth, seconds or minutes.
Most of your time is spentgetting dressed and undressed.
But I led a marketing team thatmanaged multiple marketing
campaigns and all of therequisite activities you can
imagine with that. So betweendriving to the office, driving
to the doctor's office,undressing, treating dressing
again, and getting back to myday it it became a challenge to
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fit in, and I did make it fitin. I built my schedule around
it. Every month I had to buildmy schedule around it, so I
would have to have very clearstanding meeting times that just
weren't interruptible, and thenI would have to work other
things around that.
So, my approach was that I wouldtry and book my appointment as
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late in the day as possible, andthis is because the doctor's
office had several people who'dbeen receiving light treatment
who preferred first thing in themorning, and that's when they
came in. I wasn't going to tryand move in on a crowded time. I
also carpooled to work with myhusband, so I'd try for an
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appointment sometimes around 3pmor later, with a goal of being
as close to the end of thebusiness day as possible,
because these were short visits,right?
But if I had a 3pm appointment,what I would do afterwards is I
would go to a park nearby, Iwould walk, and I would clear my
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head as I wondered what thefuture held for me. Then after
picking up my husband, hittingthe road, going back home, you
know, we'd have dinner, then Iwould sit down, and I would
finish up any work that I hadthat needed attention that
happened after I left theoffice.
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So it should come as no surprisethat after a year of this, I
started looking for a way tocontinue treatment that didn't
require so much back and forthand scheduling magic. And that's
when I asked my doctor about ahome unit, and that year was
really important, because weneeded to know it worked and
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that we would need to continueit to make it worth the
investment.
Now, getting a home unit didtake some effort. My doctor had
to prescribe it, and insuranceapproval wasn't instant. They
had to review this. This is anunusual purchase, home medical
equipment. There needs to be anexcellent case for it, and that
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case needs to really involvethat it's better for the
insurance company in addition tobeing good for the patient.
But after some back and forth, Idid finally get insurance
approval for home medicalequipment, and the unit I
received was a three panelsystem from NatBio, used to be
called National biological, andI think they've recently
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shortened that, and it's not afull walk in booth like at the
doctor's office, but it's enoughto do the job and something that
I had room for in my home,because these are not small
booths.
Okay, at that time, the cost wasabout $5,000 and my portion was
right around $1,500. And it's oncasters, so I can roll it out to
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use, and I can fold it closedand store it up against a wall
or something, if I want to. Andhaving it at home was a total
game changer.
I got a lot more flexibility,obviously, because there was no
more scheduling around officehours, I could treat when it
worked for me, and that usuallywas before I got dressed for the
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day, or at the end of the day,when I would be changing from
work clothes to home clothes, ormaybe going before bed, or
something along that lines,there is a caveat here.
Often what happens when we cando treatment at any time? We
don't do it on a schedule. So,if this is something you're
considering, I would stronglyencourage you to have an at home
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schedule that you stick to asmuch as possible, but take
advantage of that flexibility sothat it works for you. Don't
keep delaying it.
Now also, I got the benefit ofno more driving to my doctor's
office for treatment, becausethat was on the opposite side of
the town of where I worked, andit wasn't on my way home to
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where I lived that made lifeeasier. I didn't have to
interrupt the middle of my workday. I could have a full work
day right at the sameeffectiveness.
When you get a new piece ofequipment, like a light box, you
have to start really low andcome back up, because your light
bulb age is different than thelight bulb age where you were
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getting treatment, and the powermay be different. And there are
a whole bunch of things. So youkind of have to step back and
then work your way up.
But I did have to track mysessions and follow my doctor's
guidance. I was executing hisprescription. I kept a
spreadsheet with dates, times,doses, the time between
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treatments, and my reactions andsometimes, you know, I could
really be a toddler and get sickof it all and skip treatment on
a day. I might do it the nextday or a couple days later, and
I'd mark that on this sheet. I'dput in there something like
being toddler, didn't want to doit.
You know, I had to be honesthere. My doctor really, he
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needed accuracy and how I wasdelivering his prescribed
treatments. Because if hedoesn't know what's going on, it
doesn't help him do his job. Andhe needed to know the human
side. He needed to know I didn'tfeel like it because I was
ticked off. I HAD to do it.That's actually important
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information.
Now here's where things took alittle bit of an unexpected
turn. Obviously, I needed aplace to set up my home unit and
in my house, the best spot,well, that was the laundry room.
At first I thought, okay, not abig deal. I'll just treat in
there. But then reality kind ofhit. If I was going to stand in
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my laundry room several times aweek, kind of staring at the
same walls, even though I knowI've got goggles on. It's the
concept, right? While taking mylymphoma treatment and thinking
about the fact that I'm standingin there taking a treatment for
lymphoma, which is not a greatthing to think it needed to look
better than some laundry room,right?
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So, in what might be theweirdest side effect of a
medical treatment ever, we redidthe entire laundry room, and we
—my husband —painted the wallsthis lovely, deep ocean blue. It
is a small laundry room y'all.There is no way we could both
fit in there at the same time.It holds the washer and dryer
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and it had a door.
Anyway, we took everything outand reorganized. We had like
that one, you know, ventilatedshelf from when the house was
built. We took that out andreplaced it with shelves that
were more functional for what weneeded in that space. Knowing
that I was also going to bedoing treatment in that space.
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In general, we just made thespace feel more pleasant
overall. And it sounds silly,but mentally, it helped so much.
Instead of dreading standingthere and an ugly space for
treatment, you know, gettingreally negative about the fact
that I had this incurablelymphoma, I had a fresh, clean
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space that felt intentional, youknow. And sometimes when you're
dealing with something ongoing,just those little things like
making your environment slightlybetter can actually make a
really big difference. And forthe next four years, that was
pretty much my routine.
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Now, at one point, we did tryreducing my treatments from
three times a week to two, andthen we tried once, we kind of
played around. This is sort ofwhat the doctor does, right? But
as I mentioned, I have reallyfair skin, and I burn very
easily. I was that kid growingup that always had to wear the
t-shirt at the pool because Iwould blister. It's just
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terrible, right? So if I wenttoo long between sessions, I'd
have to lower my exposure timeagain, which meant losing some
of the progress that I'd made,and the patches might come back.
And after a total of five yearson Narrow Band UVB, one at the
doctor's office and four athome, I had a spot removed, and
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it's a ... they call it adysplastic nevus, and I may not
be pronouncing that correctly.It wasn't anything major, like,
ooh, we've pulled off a spotdanger, danger, but it made us
pause and reassess, because thestats are something like, people
with a dysplastic nevus are 10times more likely to develop
melanoma, and here I am,multiple times a week going into
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this box and exposing myself toNarrow Band UVB light. Now,
there's nothing that's a directconnection that says if you're
in the light box, you're gonnaget melanoma. But the challenge
is, you know, I've been doingthis a long time, there isn't
really good research on whathappens if you keep doing this
light treatment for a long time,and we needed to consider the
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risks of continued UV exposure,and the light box just wasn't
working at maintaining but noteliminating the patches that I
had, and after a certain amountof time, especially on a
treatment like I had, you know,it made sense to kind of step
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away and see how my skin woulddo without it.
Now, this was the point that I'dmentioned before, where, you
know, my doctor one day said, Ithink that the best thing for
you may be to go see thatspecialist at Duke. Now that we
were getting into a territorywhere the expertise and what
would come next in treating mewould be important.
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Now it's important to knowreally very seriously, that
Narrow Band UVB light treatmentwas a really effective early
treatment for me. It gave meyears of relief, and
transitioning to a home unit wasone of the best decisions I ever
made. But the biggest lessonreally is that medical treatment
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should work for you, not theother way around. And if there
is something in your treatmentroutine that isn't working, it's
worth discussing it with yourdoctor and seeing if there are
other options, whether that'sgetting a home unit like I did
for narrow band UVB lighttreatment, or adjusting your
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schedule, or even if it seemsunrelated, making your treatment
space more comfortable, becausethose small adjustments can have
a tremendous impact. And at theend of the day, I learned that
managing a long term conditionit's not just about the medical
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side, it's also about makingsure the lifestyle side is
sustainable too.
Thanks for listening to Fine,But Not Fine. If this episode
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I'd love to hear from you untilnext time, take care and keep on
going you.