June 29, 2023 • 40 mins
Melanoma and Skin Cancer Awareness Series - Part 12
Imagine having to hear the disheartening words - "You have cancer" not once, but four times. That's precisely the journey my incredible guest Jennifer Schultz has been on. Jennifer has battled through the physical and mental toll of her diagnosis, bravely facing feelings of isolation, guilt, anxiety and the struggle to ask for help. As a writer, educator, and speaker, she's transformed her arduous journey into powerful advocacy for melanoma education, awareness, and access to care for those without the same resources.
But battling cancer doesn't end with becoming cancer-free. On the contrary, survivorship brings with it a whole new set of challenges. Jennifer shares her ongoing journey of survival, discussing the lingering anxiety of skin checks and the unique challenges of living with melanoma. She calls attention to the importance of mental health, sharing her experiences and insights from her work with the Melanoma Research Foundation and the American Cancer Society's advocacy program. She also highlights the critical role of research in developing treatments and therapies, and the steps needed to remove barriers to access. This conversation is a potent reminder of the strength of human resilience and the collective power of shared stories. It is a conversation you won't want to miss.
You can reach Jenn through her website at JennPatrice.com
and through Instagram at @jenn_patrice
Let's work together to stop skin cancer and save lives!
Melanoma and Skin Cancer Awareness Series
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Lorie Tesny (00:00):
Discover the power of change in the fight against
melanoma.
Learn from a four-time survivoras she shares her personal
journey and what she's doing asa young adult to raise awareness
about mental health and theimportance of understanding this
cancer.
Hello and welcome to SailingThrough Life.
(00:21):
I'm Lori, your host and friend.
Join me as I shareconversations that give you hope
through the storms of life.
You'll find inspiration throughthe experiences of my guests,
as well as hearing my own crazy,wonderful adventure.
Create the life you desire bydiscovering new ways to focus on
your health and well-beingthrough modifying your habits
(00:43):
and improving your mindset.
Set sail with me on thisjourney to realize the strength
and resilience you have inside.
Let us show you how.
as you sail through life,welcome aboard.
This is part 12 of this specialseries dedicated to melanoma and
(01:07):
skin cancer awareness.
Thank you for sharing your timewith me today.
You are so important to me andI am grateful for you being here
.
I hope to continue to bringinspiration to your day every
day.
Want to be a part of the crew.
If you feel like this showprovides value, consider
supporting us financially so wecan continue to grow this show
(01:28):
and our reach to make adifference in someone's life.
You can learn more atsailingthroughlifepodcastcom.
Jennifer Schultz is a writer,educator and speaker, and she
understands the isolation andfear that often accompany a
melanoma diagnosis.
In this candid conversation,jen shares her journey from
(01:50):
hearing those words you havecancer to her quest for change
in the world of melanoma.
In this powerful episode, wediscuss the challenges of living
with melanoma, including thephysical and mental toll of a
diagnosis.
Jen shares how she is utilizingher experience as a young adult
survivor to advocate formelanoma education, awareness
(02:13):
and access to care for thosewithout the same resources.
Please welcome my guest, jen.
Thanks, jen, for joining us.
Jennifer Schultz (02:23):
Hi Lori, Thank you so much for having me.
I'm really excited to sharemore about all of this.
Lorie Tesny (02:28):
Well, obviously, this is something truly
heartfelt with both of us insharing in this series this year
And I wanted to make sure thatit was a well-rounded series,
and that's why I wanted toinvite you was because of what
you're doing to help peoplethrough this, What you're
exposing, what you're learning,how you're educating people and
(02:52):
sharing what it is that helps usget through this diagnosis of
skin cancer and melanoma.
More so And I know you've beenthrough your own situation which
is what kind of preempted thisto help people understand the
seriousness of it.
Jennifer Schultz (03:11):
Yeah, so when I was first diagnosed in 2015,
everything happened really fast.
I had my surgery before I waseven able to process it, and
then they were able to removeeverything, fortunately with
surgery So other than threemonths skin checks, there wasn't
ongoing treatment, and so itwas very interesting how it
(03:34):
really took some time for sortof like the after effects to
really hit me, and I would sayprobably about six to nine
months after I had the all clear, i really started to actually
feel like a cancer patient, eventhough I didn't have cancer
anymore.
A lot of survivors, guiltstarted creeping in and just
(03:55):
really things that I was notprepared for and never expected,
and I felt very alone for manyreasons.
One was, of course, that aftermy diagnosis ended up moving
back home to be closer to familyin case I did have future
diagnoses, but also I mean,especially at my age I didn't
(04:17):
know anyone else who hadmelanoma or really even cancer,
and so I think sometimes havingpeople that understand can help
us, make us feel a little bitmore seen, understood, and you
feel less alone.
But cancer is very isolatingAnd when you don't have people
that can really relate to whatyou're going through, even if
you're very supported.
(04:37):
You feel very alone.
Lorie Tesny (04:40):
Yeah, and I would say to I think it's you don't
want to burden people And it'shard to explain, and nor do you
want to explain, maybe manytimes over, what it is, what
you're going through, howsomebody can help.
And I think just over time youjust kind of put yourself in
that little box because it'sjust easier in a lot of ways to
(05:02):
be self-sufficient and not reachout for that help.
And that's really importantwhen you go through a diagnosis,
that you have a support groupthere.
Jennifer Schultz (05:14):
Yeah, and feeling like a burden was
something I mean.
I still struggle with it today.
I've gotten a lot better, but Imean I'm.
I was single at the time of mydiagnosis.
I've had relationships on andoff in between, but nothing very
serious, And so I'veessentially been single the
entire time since my diagnosisAnd so, especially if I have a
(05:36):
major surgery like my mostrecent one was back in October
of 2021, where they remove lymphnodes and stuff And I had to
essentially do a full shoulderreconstruction I really had to
rely on friends and family.
I had to move back home with myparents for a little bit And
it's hard not to feel like aburden.
I've gotten better at askingfor help, but I still really
(05:58):
struggle and I hate having to doit.
It's hard to not feelself-sufficient, right.
Lorie Tesny (06:03):
And I think that all plays into feeling anxious,
and depression being an aspectof it too, because you know
you're, you're, you're kind ofin that catch 22.
You want to ask for help butyou don't want to be a burden,
And so you create like layers onlayers of things you're trying
to deal with on top ofeverything else you've already
got going on, And it's so hardto catch yourself from putting
(06:27):
yourself in that position.
Jennifer Schultz (06:30):
Yeah, and I actually I've struggled with
depression on and off most of mylife, and so it wasn't really
surprising, necessarily, thatthe melanoma ended up triggering
it again.
But my mom and my sister haveboth dealt with anxiety on and
off for most of their lives, andit was something that I had
never experienced before mymelanoma diagnosis.
(06:51):
And then, wow, like I was notprepared for it, and of course,
they had shared theirexperiences, and so I had
verbally heard what dealing withor living with anxiety was like
, but nothing really preparesyou for what that really feels
like, and then, especially whencoupled with depression, it's a
(07:13):
tough cycle.
Lorie Tesny (07:15):
Yeah, yeah, it is And that's, they said it's
catching yourself.
So you can find something thateases you into feeling more
comfortable and settingsomething up for yourself to
maybe reach out with, maybereach out one time to somebody
and their support organizationsthat you can reach out to to
help with the psychological sideof a diagnosis, the emotional
(07:40):
side of a diagnosis, where youcan learn to be a little more
confident and not feel such likea burden.
I wanted to get into to theother part of anxiety, which is
like the fear of recurrence.
Jennifer Schultz (07:56):
Yeah, that's a big one, especially when you
first start out.
So after having melanoma andobviously depending on your
staging and your experience,everyone's experiences are
different, but with mine, i wasscheduled for skin text every
three months for potentiallyfive years, potentially being
able to move to six months ifthings continued to go well.
(08:19):
So it was first diagnosed inJanuary of 2015.
And to this day, i've only hadtwo skin checks where we haven't
done at least one biopsy.
Lorie Tesny (08:29):
Wow.
Jennifer Schultz (08:29):
You know you go into the skin check, there's
anxiety going into it.
what are we going to find?
Are they going to have to do abiopsy?
How many will it be?
And then, after the skin check,if you've had biopsies, and
then waiting for the results,and that can be really tough too
, and they're sort of this,almost like catch 22, where I
don't know if there's reallyanything to it.
(08:51):
But it seemed like I got myresults faster if they weren't
good where, if everything wasclear.
So they usually say it'll beabout seven to 10 business days
And so my first one I wasn'texpecting to hear anything until
Wednesday of the following weekAnd I found out on a Monday And
(09:14):
I just I knew immediately Ireally feel like I kind of knew
from the initial appointment,when they actually removed the
mole and biopsy, that itprobably wasn't going to be what
I was hoping.
But also the waiting wasterrible.
So I didn't really want to hearsooner, because I always
believe that no news was goodnews.
But also I just wanted to knowtoo.
Lorie Tesny (09:34):
Yeah, And your original diagnosis.
what?
where did you start when youhad your first diagnosis?
What was the staging on that?
Jennifer Schultz (09:44):
It was stage one B, and sometimes the stage
one B it can be borderline ofwhether or not they will remove
lymph nodes and do a lymph nodebiopsy as well, but with mine
they were concerned about howfast they felt that it was
growing.
So I've had two staged one Bdiagnosis.
(10:05):
But the second one I wasactually given the option of
doing the lymph node biopsy aswell And I chose it because that
was my third melanoma And I waslike I would rather know than
that, because if we didn't do itI'd kind of wonder, and so at
the very least I was going tohave peace of mind.
But with my first one there wasno question And we actually
(10:27):
removed three lymph nodes.
So I had to have it from twodifferent locations.
My first diagnosis was on myright shoulder, almost sort of
where like a tank top strapwould fall.
Okay, and because of thelocation when they did the lymph
node tracing to see where thesentinel node would be, the dye
(10:47):
sort of went to two differentlocations And so I had two lymph
nodes removed from the rightside of my neck And then I also
had one removed from under myright arm.
Lorie Tesny (10:59):
Yeah, I don't.
I remember that sentinel lymphnode tracing stuff.
That wasn't fun.
I didn't enjoy that too much.
Jennifer Schultz (11:08):
Yes, it was almost more painful than
anything else.
Lorie Tesny (11:10):
Yeah, and it was just the unknown.
You don't know what you'regetting into.
You have no idea what to expect.
People who do this do it allthe time And from their
perspective it's just somethingyou get done.
But as the patient that wasyeah, that was a little, a
little unnerving.
Jennifer Schultz (11:29):
Even looking back, i was so unprepared for
all of it.
I was living in Chicago at thetime, and so I'm originally from
Western Wisconsin.
I live in St Paul Minnesota now, and so actually my hometown is
only an hour from St PaulMinnesota, so definitely on the
western side.
Sure, i have about six hoursdrive from my parents where I
(11:52):
lived in Chicago, and so evenwhen I had the consultation
after I found out that I hadmelanoma, we had to put my mom
on speakerphone for theconsultation, so I was really
going through it alone, and fromthe time of diagnosis to the
time of my surgery, it was onlyabout 10 days, so everything
happened very fast.
I was all by myself, completelyunprepared, and at one point I
(12:16):
tried to.
I didn't go online in Google, ijust was going to read through
the pamphlet.
I've always been somebody thatlikes to have information, and I
feel more prepared the moreinformation that I have, but the
pain that they had given me atthe dermatologist.
I opened it up to learn moreabout melanoma, and the first
sentence said melanoma is thedeadliest form of skin cancer,
(12:37):
and I was like, yeah, i'm outAnd I didn't need that right now
, and so that was all theinformation that I had going
into it, and so I give theperson that actually did my
lymphenotracing a lot of credit.
She really took the time to kindof go through things And I mean
I even remember her name.
Her name was Katie And I'mbecause I have a cousin, katie
(12:57):
but she was like I'm reallysorry, like this is awful, it's
okay to hate me, and she's likethis is probably the most
painful thing that you're goingto go through today, but it
really, and then it ended upbeing not as bad as I expected
it, because she had made it seemso bad, and so I give her a lot
of credit for sort of preparingme for the worst.
(13:19):
We first psychology.
Lorie Tesny (13:21):
Yeah, wow, yeah, that that I remember that
experience.
And then then getting checkedin and then it seemed like
forever to go into surgery Andyou know, you think they're just
going to do a little cuttingaround and and stitch you up.
And then you come out and theysay, yeah, we went about four
(13:42):
inches across and about an inchdeep And and you're just like
what You know.
And then the overwhelming yeah,and we found some in your lymph
nodes, kind of thing, and itwas just, it was a lot to to
process.
Jennifer Schultz (13:55):
There is a lot of time between the lymph node
tracing part and then I mean,you're essentially in a gown,
they bring you back into a waterprep and then you just lay
there and wait.
And I'm so glad that my parentswere there, but by the time
anesthesia came in and talked tome I was pretty freaked out.
I've now learned, because I'vehad three surgeries now where
(14:16):
I've been under, but I strugglecoming out of anesthesia with
nausea.
Lorie Tesny (14:21):
Yeah, me too, and so this.
Jennifer Schultz (14:22):
Yeah, so I was so sick And I'm like we can't
let you go until you can keepthese crackers down And I'm like
I just want to go home.
Yeah, give me out of hereplease.
And that's really all Iremember.
I have to eat these crackers.
Lorie Tesny (14:36):
Of all the things.
And no wonder you have anxietybefore doctor's appointments or,
you know, getting checks.
I mean because you then playout all that's happened after
you heard those words the firsttime, all the stuff you've
experienced.
But yeah, it's very natural toprobably be very anxious.
Jennifer Schultz (14:55):
And I think that people don't realize that
what we go through really istraumatic, and so they're like,
oh, you're good now And I don'tknow It takes.
I don't know that I ever nothave anxiety around appointments
I obviously have learned tomanage it, but there's always
sort of that fear And you kindof know what's there.
(15:16):
And I mean I had mentioned thatI, you know, when I had that
second surgery.
That was my third melanoma, butI've had four and during it was
from March of 2021 to Februaryof 2022, i had three melanoma.
So I just was in a state of likesurvival mode I guess is the
(15:39):
best way to explain it.
And I just celebrated one yearcancer free from the latest one
and thank you on Valentine's Day.
And obviously there's still alot of anxiety and stuff.
I've continued going to therapyand stuff the entire time.
If there's one thing that Icould tell somebody at the very
beginning is prioritize yourmental health from the very
(16:02):
start, because if you don't, allof a sudden like you're not
going to be able to not addressit Right.
And then you can just go to thefront of it and start talking to
somebody about thoseexperiences.
I think the better you're ableto manage them.
But yeah, I would say it's justbeen within like the last four
or five months that I've kind offelt not healed, but like in a
(16:26):
good place again and sort ofwhere like my head's above water
and I can just take a deepbreath.
And then, of course, I had myskin check less than a week
before that one year date.
That one felt really heavy.
It felt like there was a lot ofimportance and weight tied to
it.
So when I only had one biopsythat day, which was nice, And
(16:47):
when that came back it was likethe weight of the world had been
lifted off of my shoulders.
Lorie Tesny (16:53):
And you know, for me it's hard to relate to some
of this because I've had onesurface biopsy and it was the
one that was the original one,stage three in 2017.
I've had clear skin checks andI'm knocking on wood that I
don't.
You know, it's just like it wasjust that one vicious spot that
(17:16):
just it doesn't want to go away, and you know I.
But I still have that sameanxiety every time I go that
they're going to find somethingbecause, since I've been
diagnosed, other family membersare now getting these diagnosis
and it was, you know, we had alow stage melanoma and there's
been squamous cell and basalcell that, ever since I started
(17:37):
on my journey with this, peopleare maybe being more aware, more
proactive at getting thingspointed out and checked on.
Jennifer Schultz (17:45):
And I think, too, that's where, even though
our experiences are verydifferent, there's still a lot
of things that overlap andresonate And that's why I think
it's so important to have theseconversations and share because,
like, the anxiety is somethingthat we both share, even though
it's coming from differentplaces, we have a lot of the
same fears tied to it, becausewe know what could be.
(18:09):
And I think one of the thingsand this isn't to compare to
other cancers so much, but Ithink most other cancers not all
, because they all havedifferent recurrence rates, but
with melanoma you really kind oflive with it for the rest of
your life because you'reeveryone should be going for
skin checks at least once a year, no matter what their history
(18:31):
is.
Lorie Tesny (18:32):
Right.
Jennifer Schultz (18:33):
But there's obviously a lot more weight tied
to it.
If you've had any type of skincancer And with a lot of other
types of cancer, they get to hitthat five year point And then
they're always also going to beworried about reoccurrence,
which is totally valid.
But I just think with melanomaI mean, our skin is our largest
(18:53):
organ And it's just even notnecessarily recurrences, but
even different types of skincancer Or more melanoma is like
we really live with it for therest of our life.
Lorie Tesny (19:07):
There's also the reminders too, like scars and
what you see when you look inthe mirror and you're doing skin
checks and trying to payattention to what's going on
with your skin, but every timeyou do you see scars, and I
think that triggers things inpeople too.
Jennifer Schultz (19:21):
For sure I really struggled at the
beginning.
Also, that first surgery Ihadn't even thought about the
scars, surprisingly, before Iwent into the surgery, and that
first day of the surgery I waspretty out of it.
But then the next day I got upand looked in the mirror and I
just sobbed because I wasn'tprepared at all for what I was
(19:43):
going to see and because themelanoma was on my right
shoulder.
There's just not a lot of skinthere in general, so they
actually did have a plasticsurgeon come in to ditch it to
make sure that it was going toheal.
well, just because of, like,your skin is so tight in your
shoulder area.
But then, with again havinglymph nodes removed from both
the side of my neck and myshoulder, i was like I look like
(20:06):
Frankenstein.
That was all I could think.
And I was like, oh my gosh, andit never.
I was so distraught by itbecause I was so caught off
guard by it and I never reallythought like, okay, it's not
going to look like this when thestitches come out, the stitches
aren't going to stay in, and soI mean it got a little bit
better, but it was really hard,like I just I was like, okay, my
(20:27):
appearance has forever beenaltered and they were pretty
visible locations.
And then I mean I've had so manyat this point where, luckily,
quite a few of them are.
Most of them really are inplaces that you wouldn't see on
a daily basis because they'recovered by my clothing, but I
(20:48):
still see them and my feelingsabout them have really shifted
over time.
I don't think about them asmuch.
I've kind of accepted them.
In a way They're a symbol oflike, strength and survivorship,
but for a really long time itwas just this very present
reminder of this doesn't end andjust how much I had been
(21:10):
through.
Lorie Tesny (21:11):
Right.
And where did this passion comefrom?
to spread awareness formelanoma and learning about the
education side of it, to helppeople stay safe.
Jennifer Schultz (21:25):
I think it first started just as far as
like sharing, because I had feltso alone and I wished that I
had had somebody at the timethat I was going through it, and
the person that I firstconnected to actually was into
melanoma survivor.
It was somebody around my agewho had a rare cancer and so we
(21:46):
connected on a lot of the samefeelings.
But I was like I don't know howI would ever feel comfortable
sharing and I really struggledwith feeling like a survivor
because I hadn't had, like chemoor radiation or some of these
ongoing treatments, and so Ifelt like I couldn't put my
(22:08):
story and my voice out therebecause somehow they mattered
less, because it wasn't assevere.
but I think we can't comparehard because it's hard, it is
and it doesn't do anyone good toyeah, and it doesn't do anyone
good to compare whose situationis worse, because it just is
hard and difficult and sharingmakes it easier.
(22:31):
And it was actually Katie, whohas the Instagram page
MyMelanomaWorld and is a stage 4metastatic melanoma survivor.
That was like your story givesme hope and that really
connected and resonated with meand sort of gave me that
permission to like okay, like mystory does matter, and that was
(22:54):
where it really started it.
But also I struggled a lot withfeeling like I didn't have
control of my situation becauseeven wearing sunscreen and even
wearing UPF clothing andavoiding the sun and especially
the hottest times of days, istill was going back and having
more moles removed and morebiopsies and even when they
(23:16):
weren't coming back melanomaI've had quite a few severely
atypical ones, which means we'restill going in and having to do
an excision to take more of theskin to make sure we have clear
margins and that it's not goingto turn into melanoma.
So that was really hard.
I just didn't feel.
I felt like I was doingeverything right, but I couldn't
(23:36):
get it to stop.
Lorie Tesny (23:38):
Well, that's where the education comes in.
is learning why, why?
if you're still being sun safenow, why are still things still
happening and it's so laid intothe past of what you've done so
many years in the past, and whatyou're doing now is for the
future.
Jennifer Schultz (23:56):
And then the other piece of it, too is I
can't go back and change mystory, but I know a lot of the
things that I went through thatwere difficult, and if there's
anything that I can do to makesomebody else's experience less
difficult, and then I want to dothat, so I know, even from a
medical perspective, there's alot of things that I've had to
(24:17):
really advocate to have done,whether it's side effects from
medication or, you know, to getan MRI, because I keep having
headaches and we don't know whatthey're coming from and things
like that.
And there are certaincommunities especially that have
even less access because of thetypes of health insurance that
(24:38):
they're able to afford orreceive and things like that.
And so that's where I've reallygotten into the advocacy piece
of it too, because there's a lotof things that we can do from
like a policy standpoint to makethings not only better
experiences and better outcomesfor cancer patients and cancer
(24:58):
survivors, but also making itmore equitable so that more
people have access to the carethat they deserve.
Lorie Tesny (25:05):
Yes, and you touched on something that's kind
of a thing for me was themedical bills dealing with that
and the insurance in the middleof it.
It's not where you're at andit's so much in the forefront
when you're going through thisThe logistics of what will your
insurance cover and what won'tit I can tell you.
(25:27):
I had my port put in.
They told me everything wasnormal with how it felt and it
was extremely uncomfortable fora whole year.
When I left there I didn't haveany idea what I was going to
experience.
I got home and the phone rangand it was the cancer center
saying, yeah, we just talked toyour insurance and they denied
you.
I'm like, oh heck, no, i justgot this stupid board in.
(25:48):
We're going to do this, yeah.
But I was just getting out ofsurgery and getting a phone call
that we're not able to do yourtreatment, i'm like, let's make
this happen.
What do we need to do?
but not where I wanted to be.
You just wanted to come homeand relax and just start the
healing process.
And I was dealing withinsurance phone calls that
(26:10):
afternoon And I thought, wow,this is the reality of it And
you're just trying to get thetreatment that you deserve.
Jennifer Schultz (26:16):
Yeah, And you're essentially fighting for
your life And so the last thingthat you need to do is fight for
The right to live.
Yes, like you're mad at fightingyour interns' company, fighting
the doctors, fighting whoeverIt's You don't have any energy
left to be fighting these otherthings And, yeah, it's very
frustrating And I am so luckythat I have a family member who
(26:42):
works in the hospital that I goto for my care and treatment And
so that when I sort of hit awall, I have somebody that I can
be like OK, Tiger, can you helpme?
But I also get And I try not touse it unless it's an absolute
last resort, because it justmakes me angry and frustrated
that I even have to have thatAnd most people don't have that,
(27:06):
And so who speaks up andadvocates for the people that
don't have that?
And that's kind of where I feelvery fortunate.
I have very privilege that I do, And because of that, it's
really made me want to step upand be like OK, like I will
fight for the people that don'thave it because somebody needs
to.
Lorie Tesny (27:24):
Talk a little bit more about being certified as a
melanoma educator with MelanomaResearch Foundation.
Jennifer Schultz (27:30):
Yeah, so that just came from.
I shared a little bit at thebeginning where, for me, when
I'm going through something, ijust want a lot of information.
And so, about a year and a half, two years into all of the
melanoma stuff, from a mentalhealth perspective, it's feeling
(27:51):
better And I was reallystarting to research like how
can I get back, how can I getinvolved, and things like that.
And so I was going to thedifferent website and what's
great is so the there's actuallya couple of different classes
that the Melanoma ResearchFoundation offers, and one of
them is the Certified MelanomaEducator class.
(28:11):
It's completely free, it'sself-paced, so you can just go
on their website and sign up forit.
But because I wanted to sharemore of my experience, but I
also wanted to be able to sharemore education and prevention
and awareness, and I wanted thetools to be able to do that and
really back up, so it wasn'tjust my experience but also
(28:33):
tangible things that peoplecould do and the science behind
it and actual facts and numbers,so that it was very well
rounded.
I think that the stories and theexperiences would get people
interested.
But then the numbers back it up, sure.
And so I took that class.
I took the entire thing in aday because if you have a bold A
(28:53):
, it's pretty digestible and youcan.
And I was just soaking up theinformation And I very much am a
lifelong learner.
My parents tease me.
I have gone, i have threedegrees, or both graduate
degrees, and I always kind ofjoke like next time I'm going to
law school And I was like Ithink you could just be a
student for life if you couldafford it.
(29:14):
And I was like, probably, butso this was another area that
was really personal andimportant And I plan to take
some more.
But that was really the firststep in starting to get
connected with more of thethings that the Melanoma
Research Foundation does.
Lorie Tesny (29:30):
It was sort of my first step into getting involved
with their advocacy days Andthen also connecting with them
and being able to do some oftheir Ask the Expert, webinar
series, okay, panels, as wellAnd just based on your
experience and knowing whatyou've gone through, it's also
important to understand whatchanges need to be made in the
(29:52):
system and how things areprocessed, and I know you even
got involved with the AmericanCancer Society with their
advocacy program.
Jennifer Schultz (30:03):
Yeah, so I just started with the American
Cancer Society Cancer ActionNetwork, so that's helpful.
So ACS-CAN this year it wasabout a month ago that we went
to the Minnesota State Capitoland spoke directly to lawmakers
about biomarker testing.
(30:24):
There's three major things thatwe're working on.
So with the ACS-CAN, it'scancer as a whole, not melanoma
specific, but obviously most ofthe things that we can create
change for for cancer as a wholeis also going to help melanoma
patients.
So the only one that we'reactively working on that's not
(30:45):
tied to melanoma in some shapeor form is like tied to smoking
and where it's being marketedAnd like if someone wants to
stop, resources available andstuff like that.
So that's one of the big onesthat we're working on.
But I'm actually my story isbeing used to try to get changes
(31:05):
around palliative care.
There's a lot ofmisunderstanding around
palliative care, where a lot ofpeople think that it's end of
life care and they associate ittied to hospice.
But palliative care is reallyjust holistic care, and so we
are really advocating for allcancer patients to have
palliative care made availableto them at the time of diagnosis
(31:29):
, so from the day that you arediagnosed with some form of
cancer that you have somebody onyour care team that
specifically is advocating foryou to get any sort of
specialized treatment that youneed And they continually are
checking in with you atappointments, like do you have
(31:50):
any health concerns that maybedon't directly tie to the cancer
?
So is your medication causingGI issues?
How are you feeling mentallyand emotionally?
You would seeing a therapisthelp, like do you have concerns
about nutrition and anythinglike that, and then they help
advocate for you to get that.
So we're not having to fightthose insurance companies and
(32:12):
the doctors and trying to get aspecialist.
You have somebody that theirjob is really to advocate for
you from a holistic perspectiveAnd it's like what do you need?
We'll make sure that you getthat.
And then another one that Imentioned that we recently went
for the capital for is biomarkertesting.
Yes, and a lot of people getthat mixed up with like genetic
(32:36):
testing, because the process ofactually taking the sample is
very similar.
But biomarker testing is reallyto make sure that people are
getting the right treatment atthe right time.
So if they're able to test ourbiomarkers, it's really common
for melanoma, for people'streatment to involve
(32:56):
immunotherapy, and so if they'reable to do the biomarker
testing, which is a lot morestandard.
With advanced stage melanomathey do the biomarker testing
and then that can help tell themwhat immunotherapy that your
body is going to respond to best.
But they want to remove thebarriers to biomarker testing
(33:19):
because it's that healthinsurance piece where a lot of
people get stuck at And unlessthey are stage four, maybe stage
three, their insurance companyisn't going to approve it.
But there's a lot of people whomaybe chemotherapy isn't
actually the best treatment forthem.
So it could save them moneybecause if immunotherapy is
(33:41):
actually going to be a betterfit for their specific cancer
and they can tell that from thatbiomarker testing, they're
getting the right treatment.
They're having better outcomesbecause they're recovering
faster.
They're maybe not having to gothrough as like hard on your
body treatments and things likethat.
And it's not just throwingthings at your tumor or cancer
(34:03):
and seeing what helps.
It's specifically going to thesource and then treating it with
what it specifically needs.
Lorie Tesny (34:10):
Yeah, the research piece is really something right
now.
I just you know, with thenumber of different symposiums
and webinars and things likethat learning what is out there.
Not that I ever want to takethis stuff, but it's good to
know.
I think it reassures you thatif something does happen,
(34:31):
there's a lot of stuff going onin the background right now with
research and what they'refinding with different
treatments.
Jennifer Schultz (34:37):
Yeah, i was just in Washington DC with the
melanoma research foundationabout three weeks ago and
they're specifically talking tolawmakers about melanoma
specific bills that were tryingto get passed, hopefully this
year, and more funding foreducation, research and
prevention.
But it just happened to line upthat I was able to go to the
(35:00):
melanoma research alliancepatient forum and panel
discussion and And there weretwo pieces, so the first three
panels were doctor speaking andreally sharing a lot of that
research and innovation andthere are some incredible stuff
coming through and they'refinding amazing things and so.
(35:21):
But they really believe andfeel hopeful that not only will
melanoma be Very treatable butthat we can cure it, and that's
gave me a lot of hope.
Lorie Tesny (35:33):
Yes, they're close.
Yeah, and to see it in ourlifetime.
That's gonna be the biggestthing is to to have That scope
of time where you can see whereit was something as a
Descendants now it's somethingthat potentially would be
curable in the future and to beable to see that scope of Where
(35:54):
we came from to where we'regoing.
And that's why I said it'slearning more.
Like you said that Education,that Information helps you to
process and make betterdecisions.
It helps you to be moreeducated, to ask questions and
feel more confident when you'retalking to your medical team.
It plays a big part in youroverall care, for sure.
Jennifer Schultz (36:18):
Yeah, i just got chills when you were talking
about that, because ten yearsago Anything even potentially
stage two, but anythingdefinitely beyond stage two
melanoma was really considered adeaf sense and your doctor
would pretty much just say, likeWe'll do what we can, but get
your affairs in order and wehave people now that are
nine-year survivors and We havesome really promising treatments
(36:43):
out there.
We are seeing a lot more fundingcoming both at the state level
But especially the federal levelfor this research, and there's
some really promising trialsThat are currently just waiting
for FDA approval that are reallygonna change things, and I just
I have so much hope thatMelanoma will be something that
(37:06):
it's curable like, it's not justtreatable, but people can go on
and just live right full lifeafter and I think the the
important part of This wholeconversation is avoid the whole
thing.
Lorie Tesny (37:19):
To begin with, take care of yourself, protect
yourself, do what you can.
You know a suntan is not allit's cracked up to be when it
ends up being something likethis, and there's other ways to
get a fake tan and do otherthings to be creative with
protecting yourself.
Jennifer Schultz (37:40):
The, the suntan and sunburn fades, but
our skin never forget right,right.
Lorie Tesny (37:48):
Thank you, jen.
Thank you for all you're doing,because that it really does
impact everything that happensfrom this point forward, and So
you putting yourself out there,you educating people, you
learning more, you sharing,makes a big difference for
everyone else.
So thank you.
Jennifer Schultz (38:06):
Thank you.
Thank you so much for allowingme to come on and share a little
bit more, and I really Hopethat we can continue to see some
change in the future.
Lorie Tesny (38:19):
As a four-time melanoma survivor, jen is
passionate about spreadingawareness and educating her
community on Sun Safety.
She is a certified melanomaeducator through melanoma
research foundation and a canceradvocate with the American
Cancer Society, working to makepatient experiences and outcomes
better through legislativechanges both locally and
(38:41):
nationally.
Understanding melanoma can helpyou make sense of how it
affects your life and what youcan do about it.
The more information you haveabout your diagnosis and
treatment options, the moreempowered you will feel about
managing your condition.
By making changes in perceptionand education, we can turn the
fear of melanoma into power.
(39:02):
With a combination of educationand action, we can work toward
a future where melanoma is nolonger a source of fear but a
challenge that we are equippedto face head on.
You can learn more about Jen onher website at Jen patrice calm
.
I'll include all her links inthe episode description.
Supporting the show allows us tocontinue to make a difference
(39:25):
in someone's life.
You can share this episode withfriends and family and
contribute financially.
If you or someone you careabout would like to share their
Experience, or if you know anorganization to help even just
one person, you can message methrough my website.
Just go to sailing through life.
Podcastcom to help out.
Stay anchored.
(39:46):
Chat with you next time.
Discover the power of change in the fight against
melanoma.
Learn from a four-time survivoras she shares her personal
journey and what she's doing asa young adult to raise awareness
about mental health and theimportance of understanding this
cancer.
Hello and welcome to SailingThrough Life.
(00:21):
I'm Lori, your host and friend.
Join me as I shareconversations that give you hope
through the storms of life.
You'll find inspiration throughthe experiences of my guests,
as well as hearing my own crazy,wonderful adventure.
Create the life you desire bydiscovering new ways to focus on
your health and well-beingthrough modifying your habits
(00:43):
and improving your mindset.
Set sail with me on thisjourney to realize the strength
and resilience you have inside.
Let us show you how.
as you sail through life,welcome aboard.
This is part 12 of this specialseries dedicated to melanoma and
(01:07):
skin cancer awareness.
Thank you for sharing your timewith me today.
You are so important to me andI am grateful for you being here
.
I hope to continue to bringinspiration to your day every
day.
Want to be a part of the crew.
If you feel like this showprovides value, consider
supporting us financially so wecan continue to grow this show
(01:28):
and our reach to make adifference in someone's life.
You can learn more atsailingthroughlifepodcastcom.
Jennifer Schultz is a writer,educator and speaker, and she
understands the isolation andfear that often accompany a
melanoma diagnosis.
In this candid conversation,jen shares her journey from
(01:50):
hearing those words you havecancer to her quest for change
in the world of melanoma.
In this powerful episode, wediscuss the challenges of living
with melanoma, including thephysical and mental toll of a
diagnosis.
Jen shares how she is utilizingher experience as a young adult
survivor to advocate formelanoma education, awareness
(02:13):
and access to care for thosewithout the same resources.
Please welcome my guest, jen.
Thanks, jen, for joining us.
Jennifer Schultz (02:23):
Hi Lori, Thank you so much for having me.
I'm really excited to sharemore about all of this.
Lorie Tesny (02:28):
Well, obviously, this is something truly
heartfelt with both of us insharing in this series this year
And I wanted to make sure thatit was a well-rounded series,
and that's why I wanted toinvite you was because of what
you're doing to help peoplethrough this, What you're
exposing, what you're learning,how you're educating people and
(02:52):
sharing what it is that helps usget through this diagnosis of
skin cancer and melanoma.
More so And I know you've beenthrough your own situation which
is what kind of preempted thisto help people understand the
seriousness of it.
Jennifer Schultz (03:11):
Yeah, so when I was first diagnosed in 2015,
everything happened really fast.
I had my surgery before I waseven able to process it, and
then they were able to removeeverything, fortunately with
surgery So other than threemonths skin checks, there wasn't
ongoing treatment, and so itwas very interesting how it
(03:34):
really took some time for sortof like the after effects to
really hit me, and I would sayprobably about six to nine
months after I had the all clear, i really started to actually
feel like a cancer patient, eventhough I didn't have cancer
anymore.
A lot of survivors, guiltstarted creeping in and just
(03:55):
really things that I was notprepared for and never expected,
and I felt very alone for manyreasons.
One was, of course, that aftermy diagnosis ended up moving
back home to be closer to familyin case I did have future
diagnoses, but also I mean,especially at my age I didn't
(04:17):
know anyone else who hadmelanoma or really even cancer,
and so I think sometimes havingpeople that understand can help
us, make us feel a little bitmore seen, understood, and you
feel less alone.
But cancer is very isolatingAnd when you don't have people
that can really relate to whatyou're going through, even if
you're very supported.
(04:37):
You feel very alone.
Lorie Tesny (04:40):
Yeah, and I would say to I think it's you don't
want to burden people And it'shard to explain, and nor do you
want to explain, maybe manytimes over, what it is, what
you're going through, howsomebody can help.
And I think just over time youjust kind of put yourself in
that little box because it'sjust easier in a lot of ways to
(05:02):
be self-sufficient and not reachout for that help.
And that's really importantwhen you go through a diagnosis,
that you have a support groupthere.
Jennifer Schultz (05:14):
Yeah, and feeling like a burden was
something I mean.
I still struggle with it today.
I've gotten a lot better, but Imean I'm.
I was single at the time of mydiagnosis.
I've had relationships on andoff in between, but nothing very
serious, And so I'veessentially been single the
entire time since my diagnosisAnd so, especially if I have a
(05:36):
major surgery like my mostrecent one was back in October
of 2021, where they remove lymphnodes and stuff And I had to
essentially do a full shoulderreconstruction I really had to
rely on friends and family.
I had to move back home with myparents for a little bit And
it's hard not to feel like aburden.
I've gotten better at askingfor help, but I still really
(05:58):
struggle and I hate having to doit.
It's hard to not feelself-sufficient, right.
Lorie Tesny (06:03):
And I think that all plays into feeling anxious,
and depression being an aspectof it too, because you know
you're, you're, you're kind ofin that catch 22.
You want to ask for help butyou don't want to be a burden,
And so you create like layers onlayers of things you're trying
to deal with on top ofeverything else you've already
got going on, And it's so hardto catch yourself from putting
(06:27):
yourself in that position.
Jennifer Schultz (06:30):
Yeah, and I actually I've struggled with
depression on and off most of mylife, and so it wasn't really
surprising, necessarily, thatthe melanoma ended up triggering
it again.
But my mom and my sister haveboth dealt with anxiety on and
off for most of their lives, andit was something that I had
never experienced before mymelanoma diagnosis.
(06:51):
And then, wow, like I was notprepared for it, and of course,
they had shared theirexperiences, and so I had
verbally heard what dealing withor living with anxiety was like
, but nothing really preparesyou for what that really feels
like, and then, especially whencoupled with depression, it's a
(07:13):
tough cycle.
Lorie Tesny (07:15):
Yeah, yeah, it is And that's, they said it's
catching yourself.
So you can find something thateases you into feeling more
comfortable and settingsomething up for yourself to
maybe reach out with, maybereach out one time to somebody
and their support organizationsthat you can reach out to to
help with the psychological sideof a diagnosis, the emotional
(07:40):
side of a diagnosis, where youcan learn to be a little more
confident and not feel such likea burden.
I wanted to get into to theother part of anxiety, which is
like the fear of recurrence.
Jennifer Schultz (07:56):
Yeah, that's a big one, especially when you
first start out.
So after having melanoma andobviously depending on your
staging and your experience,everyone's experiences are
different, but with mine, i wasscheduled for skin text every
three months for potentiallyfive years, potentially being
able to move to six months ifthings continued to go well.
(08:19):
So it was first diagnosed inJanuary of 2015.
And to this day, i've only hadtwo skin checks where we haven't
done at least one biopsy.
Lorie Tesny (08:29):
Wow.
Jennifer Schultz (08:29):
You know you go into the skin check, there's
anxiety going into it.
what are we going to find?
Are they going to have to do abiopsy?
How many will it be?
And then, after the skin check,if you've had biopsies, and
then waiting for the results,and that can be really tough too
, and they're sort of this,almost like catch 22, where I
don't know if there's reallyanything to it.
(08:51):
But it seemed like I got myresults faster if they weren't
good where, if everything wasclear.
So they usually say it'll beabout seven to 10 business days
And so my first one I wasn'texpecting to hear anything until
Wednesday of the following weekAnd I found out on a Monday And
(09:14):
I just I knew immediately Ireally feel like I kind of knew
from the initial appointment,when they actually removed the
mole and biopsy, that itprobably wasn't going to be what
I was hoping.
But also the waiting wasterrible.
So I didn't really want to hearsooner, because I always
believe that no news was goodnews.
But also I just wanted to knowtoo.
Lorie Tesny (09:34):
Yeah, And your original diagnosis.
what?
where did you start when youhad your first diagnosis?
What was the staging on that?
Jennifer Schultz (09:44):
It was stage one B, and sometimes the stage
one B it can be borderline ofwhether or not they will remove
lymph nodes and do a lymph nodebiopsy as well, but with mine
they were concerned about howfast they felt that it was
growing.
So I've had two staged one Bdiagnosis.
(10:05):
But the second one I wasactually given the option of
doing the lymph node biopsy aswell And I chose it because that
was my third melanoma And I waslike I would rather know than
that, because if we didn't do itI'd kind of wonder, and so at
the very least I was going tohave peace of mind.
But with my first one there wasno question And we actually
(10:27):
removed three lymph nodes.
So I had to have it from twodifferent locations.
My first diagnosis was on myright shoulder, almost sort of
where like a tank top strapwould fall.
Okay, and because of thelocation when they did the lymph
node tracing to see where thesentinel node would be, the dye
(10:47):
sort of went to two differentlocations And so I had two lymph
nodes removed from the rightside of my neck And then I also
had one removed from under myright arm.
Lorie Tesny (10:59):
Yeah, I don't.
I remember that sentinel lymphnode tracing stuff.
That wasn't fun.
I didn't enjoy that too much.
Jennifer Schultz (11:08):
Yes, it was almost more painful than
anything else.
Lorie Tesny (11:10):
Yeah, and it was just the unknown.
You don't know what you'regetting into.
You have no idea what to expect.
People who do this do it allthe time And from their
perspective it's just somethingyou get done.
But as the patient that wasyeah, that was a little, a
little unnerving.
Jennifer Schultz (11:29):
Even looking back, i was so unprepared for
all of it.
I was living in Chicago at thetime, and so I'm originally from
Western Wisconsin.
I live in St Paul Minnesota now, and so actually my hometown is
only an hour from St PaulMinnesota, so definitely on the
western side.
Sure, i have about six hoursdrive from my parents where I
(11:52):
lived in Chicago, and so evenwhen I had the consultation
after I found out that I hadmelanoma, we had to put my mom
on speakerphone for theconsultation, so I was really
going through it alone, and fromthe time of diagnosis to the
time of my surgery, it was onlyabout 10 days, so everything
happened very fast.
I was all by myself, completelyunprepared, and at one point I
(12:16):
tried to.
I didn't go online in Google, ijust was going to read through
the pamphlet.
I've always been somebody thatlikes to have information, and I
feel more prepared the moreinformation that I have, but the
pain that they had given me atthe dermatologist.
I opened it up to learn moreabout melanoma, and the first
sentence said melanoma is thedeadliest form of skin cancer,
(12:37):
and I was like, yeah, i'm outAnd I didn't need that right now
, and so that was all theinformation that I had going
into it, and so I give theperson that actually did my
lymphenotracing a lot of credit.
She really took the time to kindof go through things And I mean
I even remember her name.
Her name was Katie And I'mbecause I have a cousin, katie
(12:57):
but she was like I'm reallysorry, like this is awful, it's
okay to hate me, and she's likethis is probably the most
painful thing that you're goingto go through today, but it
really, and then it ended upbeing not as bad as I expected
it, because she had made it seemso bad, and so I give her a lot
of credit for sort of preparingme for the worst.
(13:19):
We first psychology.
Lorie Tesny (13:21):
Yeah, wow, yeah, that that I remember that
experience.
And then then getting checkedin and then it seemed like
forever to go into surgery Andyou know, you think they're just
going to do a little cuttingaround and and stitch you up.
And then you come out and theysay, yeah, we went about four
(13:42):
inches across and about an inchdeep And and you're just like
what You know.
And then the overwhelming yeah,and we found some in your lymph
nodes, kind of thing, and itwas just, it was a lot to to
process.
Jennifer Schultz (13:55):
There is a lot of time between the lymph node
tracing part and then I mean,you're essentially in a gown,
they bring you back into a waterprep and then you just lay
there and wait.
And I'm so glad that my parentswere there, but by the time
anesthesia came in and talked tome I was pretty freaked out.
I've now learned, because I'vehad three surgeries now where
(14:16):
I've been under, but I strugglecoming out of anesthesia with
nausea.
Lorie Tesny (14:21):
Yeah, me too, and so this.
Jennifer Schultz (14:22):
Yeah, so I was so sick And I'm like we can't
let you go until you can keepthese crackers down And I'm like
I just want to go home.
Yeah, give me out of hereplease.
And that's really all Iremember.
I have to eat these crackers.
Lorie Tesny (14:36):
Of all the things.
And no wonder you have anxietybefore doctor's appointments or,
you know, getting checks.
I mean because you then playout all that's happened after
you heard those words the firsttime, all the stuff you've
experienced.
But yeah, it's very natural toprobably be very anxious.
Jennifer Schultz (14:55):
And I think that people don't realize that
what we go through really istraumatic, and so they're like,
oh, you're good now And I don'tknow It takes.
I don't know that I ever nothave anxiety around appointments
I obviously have learned tomanage it, but there's always
sort of that fear And you kindof know what's there.
(15:16):
And I mean I had mentioned thatI, you know, when I had that
second surgery.
That was my third melanoma, butI've had four and during it was
from March of 2021 to Februaryof 2022, i had three melanoma.
So I just was in a state of likesurvival mode I guess is the
(15:39):
best way to explain it.
And I just celebrated one yearcancer free from the latest one
and thank you on Valentine's Day.
And obviously there's still alot of anxiety and stuff.
I've continued going to therapyand stuff the entire time.
If there's one thing that Icould tell somebody at the very
beginning is prioritize yourmental health from the very
(16:02):
start, because if you don't, allof a sudden like you're not
going to be able to not addressit Right.
And then you can just go to thefront of it and start talking to
somebody about thoseexperiences.
I think the better you're ableto manage them.
But yeah, I would say it's justbeen within like the last four
or five months that I've kind offelt not healed, but like in a
(16:26):
good place again and sort ofwhere like my head's above water
and I can just take a deepbreath.
And then, of course, I had myskin check less than a week
before that one year date.
That one felt really heavy.
It felt like there was a lot ofimportance and weight tied to
it.
So when I only had one biopsythat day, which was nice, And
(16:47):
when that came back it was likethe weight of the world had been
lifted off of my shoulders.
Lorie Tesny (16:53):
And you know, for me it's hard to relate to some
of this because I've had onesurface biopsy and it was the
one that was the original one,stage three in 2017.
I've had clear skin checks andI'm knocking on wood that I
don't.
You know, it's just like it wasjust that one vicious spot that
(17:16):
just it doesn't want to go away, and you know I.
But I still have that sameanxiety every time I go that
they're going to find somethingbecause, since I've been
diagnosed, other family membersare now getting these diagnosis
and it was, you know, we had alow stage melanoma and there's
been squamous cell and basalcell that, ever since I started
(17:37):
on my journey with this, peopleare maybe being more aware, more
proactive at getting thingspointed out and checked on.
Jennifer Schultz (17:45):
And I think, too, that's where, even though
our experiences are verydifferent, there's still a lot
of things that overlap andresonate And that's why I think
it's so important to have theseconversations and share because,
like, the anxiety is somethingthat we both share, even though
it's coming from differentplaces, we have a lot of the
same fears tied to it, becausewe know what could be.
(18:09):
And I think one of the thingsand this isn't to compare to
other cancers so much, but Ithink most other cancers not all
, because they all havedifferent recurrence rates, but
with melanoma you really kind oflive with it for the rest of
your life because you'reeveryone should be going for
skin checks at least once a year, no matter what their history
(18:31):
is.
Lorie Tesny (18:32):
Right.
Jennifer Schultz (18:33):
But there's obviously a lot more weight tied
to it.
If you've had any type of skincancer And with a lot of other
types of cancer, they get to hitthat five year point And then
they're always also going to beworried about reoccurrence,
which is totally valid.
But I just think with melanomaI mean, our skin is our largest
(18:53):
organ And it's just even notnecessarily recurrences, but
even different types of skincancer Or more melanoma is like
we really live with it for therest of our life.
Lorie Tesny (19:07):
There's also the reminders too, like scars and
what you see when you look inthe mirror and you're doing skin
checks and trying to payattention to what's going on
with your skin, but every timeyou do you see scars, and I
think that triggers things inpeople too.
Jennifer Schultz (19:21):
For sure I really struggled at the
beginning.
Also, that first surgery Ihadn't even thought about the
scars, surprisingly, before Iwent into the surgery, and that
first day of the surgery I waspretty out of it.
But then the next day I got upand looked in the mirror and I
just sobbed because I wasn'tprepared at all for what I was
(19:43):
going to see and because themelanoma was on my right
shoulder.
There's just not a lot of skinthere in general, so they
actually did have a plasticsurgeon come in to ditch it to
make sure that it was going toheal.
well, just because of, like,your skin is so tight in your
shoulder area.
But then, with again havinglymph nodes removed from both
the side of my neck and myshoulder, i was like I look like
(20:06):
Frankenstein.
That was all I could think.
And I was like, oh my gosh, andit never.
I was so distraught by itbecause I was so caught off
guard by it and I never reallythought like, okay, it's not
going to look like this when thestitches come out, the stitches
aren't going to stay in, and soI mean it got a little bit
better, but it was really hard,like I just I was like, okay, my
(20:27):
appearance has forever beenaltered and they were pretty
visible locations.
And then I mean I've had so manyat this point where, luckily,
quite a few of them are.
Most of them really are inplaces that you wouldn't see on
a daily basis because they'recovered by my clothing, but I
(20:48):
still see them and my feelingsabout them have really shifted
over time.
I don't think about them asmuch.
I've kind of accepted them.
In a way They're a symbol oflike, strength and survivorship,
but for a really long time itwas just this very present
reminder of this doesn't end andjust how much I had been
(21:10):
through.
Lorie Tesny (21:11):
Right.
And where did this passion comefrom?
to spread awareness formelanoma and learning about the
education side of it, to helppeople stay safe.
Jennifer Schultz (21:25):
I think it first started just as far as
like sharing, because I had feltso alone and I wished that I
had had somebody at the timethat I was going through it, and
the person that I firstconnected to actually was into
melanoma survivor.
It was somebody around my agewho had a rare cancer and so we
(21:46):
connected on a lot of the samefeelings.
But I was like I don't know howI would ever feel comfortable
sharing and I really struggledwith feeling like a survivor
because I hadn't had, like chemoor radiation or some of these
ongoing treatments, and so Ifelt like I couldn't put my
(22:08):
story and my voice out therebecause somehow they mattered
less, because it wasn't assevere.
but I think we can't comparehard because it's hard, it is
and it doesn't do anyone good toyeah, and it doesn't do anyone
good to compare whose situationis worse, because it just is
hard and difficult and sharingmakes it easier.
(22:31):
And it was actually Katie, whohas the Instagram page
MyMelanomaWorld and is a stage 4metastatic melanoma survivor.
That was like your story givesme hope and that really
connected and resonated with meand sort of gave me that
permission to like okay, like mystory does matter, and that was
(22:54):
where it really started it.
But also I struggled a lot withfeeling like I didn't have
control of my situation becauseeven wearing sunscreen and even
wearing UPF clothing andavoiding the sun and especially
the hottest times of days, istill was going back and having
more moles removed and morebiopsies and even when they
(23:16):
weren't coming back melanomaI've had quite a few severely
atypical ones, which means we'restill going in and having to do
an excision to take more of theskin to make sure we have clear
margins and that it's not goingto turn into melanoma.
So that was really hard.
I just didn't feel.
I felt like I was doingeverything right, but I couldn't
(23:36):
get it to stop.
Lorie Tesny (23:38):
Well, that's where the education comes in.
is learning why, why?
if you're still being sun safenow, why are still things still
happening and it's so laid intothe past of what you've done so
many years in the past, and whatyou're doing now is for the
future.
Jennifer Schultz (23:56):
And then the other piece of it, too is I
can't go back and change mystory, but I know a lot of the
things that I went through thatwere difficult, and if there's
anything that I can do to makesomebody else's experience less
difficult, and then I want to dothat, so I know, even from a
medical perspective, there's alot of things that I've had to
(24:17):
really advocate to have done,whether it's side effects from
medication or, you know, to getan MRI, because I keep having
headaches and we don't know whatthey're coming from and things
like that.
And there are certaincommunities especially that have
even less access because of thetypes of health insurance that
(24:38):
they're able to afford orreceive and things like that.
And so that's where I've reallygotten into the advocacy piece
of it too, because there's a lotof things that we can do from
like a policy standpoint to makethings not only better
experiences and better outcomesfor cancer patients and cancer
(24:58):
survivors, but also making itmore equitable so that more
people have access to the carethat they deserve.
Lorie Tesny (25:05):
Yes, and you touched on something that's kind
of a thing for me was themedical bills dealing with that
and the insurance in the middleof it.
It's not where you're at andit's so much in the forefront
when you're going through thisThe logistics of what will your
insurance cover and what won'tit I can tell you.
(25:27):
I had my port put in.
They told me everything wasnormal with how it felt and it
was extremely uncomfortable fora whole year.
When I left there I didn't haveany idea what I was going to
experience.
I got home and the phone rangand it was the cancer center
saying, yeah, we just talked toyour insurance and they denied
you.
I'm like, oh heck, no, i justgot this stupid board in.
(25:48):
We're going to do this, yeah.
But I was just getting out ofsurgery and getting a phone call
that we're not able to do yourtreatment, i'm like, let's make
this happen.
What do we need to do?
but not where I wanted to be.
You just wanted to come homeand relax and just start the
healing process.
And I was dealing withinsurance phone calls that
(26:10):
afternoon And I thought, wow,this is the reality of it And
you're just trying to get thetreatment that you deserve.
Jennifer Schultz (26:16):
Yeah, And you're essentially fighting for
your life And so the last thingthat you need to do is fight for
The right to live.
Yes, like you're mad at fightingyour interns' company, fighting
the doctors, fighting whoeverIt's You don't have any energy
left to be fighting these otherthings And, yeah, it's very
frustrating And I am so luckythat I have a family member who
(26:42):
works in the hospital that I goto for my care and treatment And
so that when I sort of hit awall, I have somebody that I can
be like OK, Tiger, can you helpme?
But I also get And I try not touse it unless it's an absolute
last resort, because it justmakes me angry and frustrated
that I even have to have thatAnd most people don't have that,
(27:06):
And so who speaks up andadvocates for the people that
don't have that?
And that's kind of where I feelvery fortunate.
I have very privilege that I do, And because of that, it's
really made me want to step upand be like OK, like I will
fight for the people that don'thave it because somebody needs
to.
Lorie Tesny (27:24):
Talk a little bit more about being certified as a
melanoma educator with MelanomaResearch Foundation.
Jennifer Schultz (27:30):
Yeah, so that just came from.
I shared a little bit at thebeginning where, for me, when
I'm going through something, ijust want a lot of information.
And so, about a year and a half, two years into all of the
melanoma stuff, from a mentalhealth perspective, it's feeling
(27:51):
better And I was reallystarting to research like how
can I get back, how can I getinvolved, and things like that.
And so I was going to thedifferent website and what's
great is so the there's actuallya couple of different classes
that the Melanoma ResearchFoundation offers, and one of
them is the Certified MelanomaEducator class.
(28:11):
It's completely free, it'sself-paced, so you can just go
on their website and sign up forit.
But because I wanted to sharemore of my experience, but I
also wanted to be able to sharemore education and prevention
and awareness, and I wanted thetools to be able to do that and
really back up, so it wasn'tjust my experience but also
(28:33):
tangible things that peoplecould do and the science behind
it and actual facts and numbers,so that it was very well
rounded.
I think that the stories and theexperiences would get people
interested.
But then the numbers back it up, sure.
And so I took that class.
I took the entire thing in aday because if you have a bold A
(28:53):
, it's pretty digestible and youcan.
And I was just soaking up theinformation And I very much am a
lifelong learner.
My parents tease me.
I have gone, i have threedegrees, or both graduate
degrees, and I always kind ofjoke like next time I'm going to
law school And I was like Ithink you could just be a
student for life if you couldafford it.
(29:14):
And I was like, probably, butso this was another area that
was really personal andimportant And I plan to take
some more.
But that was really the firststep in starting to get
connected with more of thethings that the Melanoma
Research Foundation does.
Lorie Tesny (29:30):
It was sort of my first step into getting involved
with their advocacy days Andthen also connecting with them
and being able to do some oftheir Ask the Expert, webinar
series, okay, panels, as wellAnd just based on your
experience and knowing whatyou've gone through, it's also
important to understand whatchanges need to be made in the
(29:52):
system and how things areprocessed, and I know you even
got involved with the AmericanCancer Society with their
advocacy program.
Jennifer Schultz (30:03):
Yeah, so I just started with the American
Cancer Society Cancer ActionNetwork, so that's helpful.
So ACS-CAN this year it wasabout a month ago that we went
to the Minnesota State Capitoland spoke directly to lawmakers
about biomarker testing.
(30:24):
There's three major things thatwe're working on.
So with the ACS-CAN, it'scancer as a whole, not melanoma
specific, but obviously most ofthe things that we can create
change for for cancer as a wholeis also going to help melanoma
patients.
So the only one that we'reactively working on that's not
(30:45):
tied to melanoma in some shapeor form is like tied to smoking
and where it's being marketedAnd like if someone wants to
stop, resources available andstuff like that.
So that's one of the big onesthat we're working on.
But I'm actually my story isbeing used to try to get changes
(31:05):
around palliative care.
There's a lot ofmisunderstanding around
palliative care, where a lot ofpeople think that it's end of
life care and they associate ittied to hospice.
But palliative care is reallyjust holistic care, and so we
are really advocating for allcancer patients to have
palliative care made availableto them at the time of diagnosis
(31:29):
, so from the day that you arediagnosed with some form of
cancer that you have somebody onyour care team that
specifically is advocating foryou to get any sort of
specialized treatment that youneed And they continually are
checking in with you atappointments, like do you have
(31:50):
any health concerns that maybedon't directly tie to the cancer
?
So is your medication causingGI issues?
How are you feeling mentallyand emotionally?
You would seeing a therapisthelp, like do you have concerns
about nutrition and anythinglike that, and then they help
advocate for you to get that.
So we're not having to fightthose insurance companies and
(32:12):
the doctors and trying to get aspecialist.
You have somebody that theirjob is really to advocate for
you from a holistic perspectiveAnd it's like what do you need?
We'll make sure that you getthat.
And then another one that Imentioned that we recently went
for the capital for is biomarkertesting.
Yes, and a lot of people getthat mixed up with like genetic
(32:36):
testing, because the process ofactually taking the sample is
very similar.
But biomarker testing is reallyto make sure that people are
getting the right treatment atthe right time.
So if they're able to test ourbiomarkers, it's really common
for melanoma, for people'streatment to involve
(32:56):
immunotherapy, and so if they'reable to do the biomarker
testing, which is a lot morestandard.
With advanced stage melanomathey do the biomarker testing
and then that can help tell themwhat immunotherapy that your
body is going to respond to best.
But they want to remove thebarriers to biomarker testing
(33:19):
because it's that healthinsurance piece where a lot of
people get stuck at And unlessthey are stage four, maybe stage
three, their insurance companyisn't going to approve it.
But there's a lot of people whomaybe chemotherapy isn't
actually the best treatment forthem.
So it could save them moneybecause if immunotherapy is
(33:41):
actually going to be a betterfit for their specific cancer
and they can tell that from thatbiomarker testing, they're
getting the right treatment.
They're having better outcomesbecause they're recovering
faster.
They're maybe not having to gothrough as like hard on your
body treatments and things likethat.
And it's not just throwingthings at your tumor or cancer
(34:03):
and seeing what helps.
It's specifically going to thesource and then treating it with
what it specifically needs.
Lorie Tesny (34:10):
Yeah, the research piece is really something right
now.
I just you know, with thenumber of different symposiums
and webinars and things likethat learning what is out there.
Not that I ever want to takethis stuff, but it's good to
know.
I think it reassures you thatif something does happen,
(34:31):
there's a lot of stuff going onin the background right now with
research and what they'refinding with different
treatments.
Jennifer Schultz (34:37):
Yeah, i was just in Washington DC with the
melanoma research foundationabout three weeks ago and
they're specifically talking tolawmakers about melanoma
specific bills that were tryingto get passed, hopefully this
year, and more funding foreducation, research and
prevention.
But it just happened to line upthat I was able to go to the
(35:00):
melanoma research alliancepatient forum and panel
discussion and And there weretwo pieces, so the first three
panels were doctor speaking andreally sharing a lot of that
research and innovation andthere are some incredible stuff
coming through and they'refinding amazing things and so.
(35:21):
But they really believe andfeel hopeful that not only will
melanoma be Very treatable butthat we can cure it, and that's
gave me a lot of hope.
Lorie Tesny (35:33):
Yes, they're close.
Yeah, and to see it in ourlifetime.
That's gonna be the biggestthing is to to have That scope
of time where you can see whereit was something as a
Descendants now it's somethingthat potentially would be
curable in the future and to beable to see that scope of Where
(35:54):
we came from to where we'regoing.
And that's why I said it'slearning more.
Like you said that Education,that Information helps you to
process and make betterdecisions.
It helps you to be moreeducated, to ask questions and
feel more confident when you'retalking to your medical team.
It plays a big part in youroverall care, for sure.
Jennifer Schultz (36:18):
Yeah, i just got chills when you were talking
about that, because ten yearsago Anything even potentially
stage two, but anythingdefinitely beyond stage two
melanoma was really considered adeaf sense and your doctor
would pretty much just say, likeWe'll do what we can, but get
your affairs in order and wehave people now that are
nine-year survivors and We havesome really promising treatments
(36:43):
out there.
We are seeing a lot more fundingcoming both at the state level
But especially the federal levelfor this research, and there's
some really promising trialsThat are currently just waiting
for FDA approval that are reallygonna change things, and I just
I have so much hope thatMelanoma will be something that
(37:06):
it's curable like, it's not justtreatable, but people can go on
and just live right full lifeafter and I think the the
important part of This wholeconversation is avoid the whole
thing.
Lorie Tesny (37:19):
To begin with, take care of yourself, protect
yourself, do what you can.
You know a suntan is not allit's cracked up to be when it
ends up being something likethis, and there's other ways to
get a fake tan and do otherthings to be creative with
protecting yourself.
Jennifer Schultz (37:40):
The, the suntan and sunburn fades, but
our skin never forget right,right.
Lorie Tesny (37:48):
Thank you, jen.
Thank you for all you're doing,because that it really does
impact everything that happensfrom this point forward, and So
you putting yourself out there,you educating people, you
learning more, you sharing,makes a big difference for
everyone else.
So thank you.
Jennifer Schultz (38:06):
Thank you.
Thank you so much for allowingme to come on and share a little
bit more, and I really Hopethat we can continue to see some
change in the future.
Lorie Tesny (38:19):
As a four-time melanoma survivor, jen is
passionate about spreadingawareness and educating her
community on Sun Safety.
She is a certified melanomaeducator through melanoma
research foundation and a canceradvocate with the American
Cancer Society, working to makepatient experiences and outcomes
better through legislativechanges both locally and
(38:41):
nationally.
Understanding melanoma can helpyou make sense of how it
affects your life and what youcan do about it.
The more information you haveabout your diagnosis and
treatment options, the moreempowered you will feel about
managing your condition.
By making changes in perceptionand education, we can turn the
fear of melanoma into power.
(39:02):
With a combination of educationand action, we can work toward
a future where melanoma is nolonger a source of fear but a
challenge that we are equippedto face head on.
You can learn more about Jen onher website at Jen patrice calm
.
I'll include all her links inthe episode description.
Supporting the show allows us tocontinue to make a difference
(39:25):
in someone's life.
You can share this episode withfriends and family and
contribute financially.
If you or someone you careabout would like to share their
Experience, or if you know anorganization to help even just
one person, you can message methrough my website.
Just go to sailing through life.
Podcastcom to help out.
Stay anchored.
(39:46):
Chat with you next time.
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