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Giving Your Diagnosis Direction | The Eye Believe Podcast · The Eye Believe Podcast

0:03
all right
0:03
welcome back to the Eye Believe Podcast
0:05
I'm your host Danet
0:06
and I'm joined with two patients today
0:07
and we're gonna be talking about giving your diagnosis
0:09
direction I've got Lucy Innes here and Lindsay Brown
0:12
and
0:13
these ladies have been guests on the Eye Believe Podcast
0:15
before so if you've listened to their episodes
0:17
say hi if you want to go listen to their past episodes
0:20
they're both wonderful speakers
0:21
and Lucy talked a lot about the immune system
0:24
in a previous episode uh
0:25
she really broke it down
0:26
and just easy to understand terms
0:28
and then Lindsay has shared her story
0:31
about really kind of
0:32
some of what we're going to cover today
0:33
but she is a speaker
0:34
and so she's shared a little about her
0:37
her keynote speech that she has started giving
0:40
and I'm super excited to get to talk to them
0:42
because these are two ladies in our community who
0:44
I feel like have done such a fantastic job
0:46
of giving their diagnosis of ocular melanoma
0:49
some kind of direction and some meaning
0:51
and I'm really hopeful that this will be an episode
0:53
that if you're listening
0:55
that you'll find maybe
0:56
a little extra purpose
0:57
behind what's going on in your diagnosis
0:59
um doesn't necessarily mean it has to make it better um
1:04
but I think it does improve
1:05
you know how our mental state happens um
1:08
and really just how we're able to navigate everything
1:11
I don't know what do you guys think
1:13
yeah I absolutely agree
1:15
one of the things
1:16
that I'm really excited to talk through
1:17
is for everyone who is listening in
1:20
who just feels like they're just stuck
1:23
um I feel like conversations like this
1:25
can really pull you out of that
1:27
and pull you out of the spiral
1:29
and so I'm hopeful
1:30
that we can lend some inspiration and motivation
1:33
to anyone who's just really in need
1:35
I'm sure we all are
1:37
absolutely well
1:38
thank you guys for being here
1:39
um to start off
1:40
can I actually have both of you just
1:41
kind of give us a brief cap of your
1:43
a brief recap of your story with ocular melanoma
1:46
um maybe give us
1:47
you know just diagnosis date
1:49
uh I guess you could say age of diagnosis
1:51
if you feel like sharing and then um
1:54
kind of where you're at today
1:56
uh Lucy
1:56
I'm gonna let you go first
1:58
yeah so
1:59
I was diagnosed uh
2:00
three years ago so I think I was 22
2:03
um I just started PhD program
2:05
doing biology research already um
2:08
not specifically in the cancer field
2:10
but sort of actually kind of adjacent to that
2:13
and at you know
2:13
at first I was really kind of like
2:15
I don't wanna do anything
2:16
I don't even wanna think about
2:17
uveal melanoma
2:19
obviously like
2:20
it was such a but I ultimately wound up
2:22
that was all I could really think about at work was
2:25
like reading these papers
2:26
and so
2:26
that was really what sort of struck me on the path of
2:29
of making that the direction for my diagnosis
2:33
no it's amazing
2:34
um and so Lucy you
2:37
you started off with a diagnosis
2:40
and you were already in college right
2:42
like
2:42
you were already going to college for your PhD program
2:45
and then now since then
2:46
you've kind of evolved your studies
2:48
which we can get into that a little bit more
2:50
but um
2:51
Linds do you want to tell us a little more
2:52
about your diagnosis story
2:53
and where you're at today
2:54
yeah sure sure
2:55
so I was diagnosed in 2022 uh
2:58
in may uh
3:00
had my eye enucleated two weeks later in June of 2022
3:04
and since then 18 months after diagnosis uh
3:08
metastasized to my liver
3:09
and I've since done immune embolization
3:11
chemo embolization um
3:14
PHP or the Hepzato kit and I'm now um
3:18
thankful that the Rogi trial exists
3:20
cause I'm currently um
3:21
enrolled in that
3:22
so it's been a wild ride these last couple of years
3:26
but I'm coming up on my 4th anniversary next year
3:29
which is amazing and I feel really good about um
3:34
still being able to find purpose
3:35
and passion in all of this um
3:39
and so I'm excited to be here
3:40
thanks for having me yeah awesome
3:42
and you know what guys I'm gonna jump in
3:44
cause sometimes people don't realize that I'm a patient
3:46
too um
3:46
and I am also someone who
3:48
I feel like has found some ways to well
3:50
some really significant ways
3:52
to give my diagnosis a direction
3:54
um obviously I'm here hosting the Eye Believe Podcast
3:56
and that's one of the big things that I've done
3:58
but I was diagnosed um
4:00
just over five years ago in the summer of 2020
4:03
with a tumor in my right eye that was treated
4:06
and then a couple years later
4:08
I metastasized to my liver as well
4:10
um in the summer
4:11
and I have done kind of a mixture of spot treatment and
4:15
um disease management
4:17
just kind of hoping that I'll stay NED
4:19
as long as possible um
4:21
I've done histotripsy which is a newer
4:24
ablative type of procedure
4:25
and then I have also been doing
4:27
I'm on coming up on my fourth cycle of Hepzato Kit
4:30
so I get it like
4:31
lots of things lots of things to manage and
4:34
and it is definitely a different ball game
4:36
to have regular treatment
4:38
I think than to have it like
4:41
spread out a lot so anyway okay
4:45
so let's talk a little more about
4:46
what each of you guys have done
4:47
because I I want to get back to what Lucy mentioned
4:50
like she mentioned how there was this period of time
4:52
that you kind of were like
4:53
I don't want anything to do with
4:54
uveal melanoma
4:55
so what changed Lucy
4:57
like why did you change um
4:59
and kind of switch your focus
5:00
because I think that's significant
5:02
yeah yeah
5:03
so for me
5:04
I mean a big part of it was at first like
5:07
it's so scary it's so like
5:09
I think very upsetting in a lot of ways
5:11
and it was like
5:12
I think I was a little traumatized for a little bit of
5:14
just like
5:14
little shell shocked a little like
5:16
you know I feel like
5:18
there's so much you have to
5:20
re evaluate about your life and
5:22
you know
5:23
I think sometimes it sort of feels like a bad dream
5:24
and then at a certain point it starts becoming normal
5:28
and like I don't think there's like one like
5:30
point you can point there isn't like
5:32
one day you can point at where it's like oh
5:34
that was the day it like
5:35
kind of just became my new normal
5:37
um I feel like it
5:38
you know it obviously comes along gradually
5:40
but for me it was like
5:43
you know I think I was going through
5:44
through these cycles of like
5:45
I don't wanna think about it
5:46
and then
5:46
obsessively thinking about it and reading about it
5:48
and you know
5:49
I had this whole toolkit about how to like
5:51
obsessively read about something that I
5:54
hahaha obsessively reading about um
5:57
and so I think there's a bit of
5:58
sort of maybe an unhealthy amount of
6:00
of avoidance and obsession
6:02
and then at a certain point
6:03
like I started coming up with more
6:06
you know I
6:07
a lot of the the start of your PhD is like
6:09
thinking of projects thinking of research projects
6:12
thinking like
6:13
trying to figure out what do I want to spend the next
6:15
couple years of my life doing
6:16
and it sort of went from being this kind of chaotic
6:20
like scramble in my head to like
6:21
actually coming up with more
6:23
like cohesive ideas of potential projects I could do
6:27
and um
6:28
at a certain point with I think the
6:30
the big moment the catalyst
6:32
was when I actually went in for my radiation
6:34
my um
6:36
yeah cause I
6:37
I had a couple different like
6:38
treatments that kind of shrank the tumor at first
6:40
but like
6:40
at a certain point like no
6:41
we gotta we gotta irradiate
6:43
um they went in actually
6:45
you know when he took the biopsy
6:47
I asked I was like
6:48
can I have a little bit extra to like
6:50
bring back and put in my lap
6:52
and he was like yeah sure
6:55
I don't even know if that was legal
6:56
but so maybe let's look that up and cut that part out
6:59
if it's not it's okay
7:02
I mean I asked
7:03
I asked if I could keep my eye
7:05
like when it was enucleated
7:06
I was like so can I keep it
7:07
and they were like no
7:09
but you can have a picture
7:12
but yeah
7:13
basically I was able to like
7:14
take that you know
7:15
take a little piece back to bring into the lab and
7:17
you know honestly
7:18
I haven't even done anything meaningful with it
7:20
it was frankly
7:21
just too little material to actually do anything with
7:23
but having that there I think
7:26
was what really like
7:27
was like okay
7:28
like this is absolutely what I have to do with
7:31
like this amazing opportunity I have
7:33
like I'm obviously unlucky in so many ways
7:35
but I felt really really lucky in one way of being
7:39
you know put in a position in like
7:41
such a unique position
7:42
to be able to research this disease
7:44
that's so under researched
7:46
Lucy
7:46
thanks so much for sharing
7:47
um Linds
7:48
can you go ahead and tell us a little more about what's
7:51
kind of shifted for you
7:52
cause
7:52
I know the first time we recorded an episode with you
7:54
you talked a little more about your previous profession
7:57
and I think that it's kind of evolved since then
7:59
yeah yeah
8:00
so before diagnosis I well
8:02
and I still am
8:03
very much ingrained in the healthcare space
8:05
and the acute care space
8:07
more on the sterile processing end of things
8:09
and for those of you who don't know
8:10
what sterile processing is
8:12
it's the people in the hospital
8:13
who clean and sterilize surgical instruments
8:15
to get them ready and safe for a surgical procedure
8:19
so talk about full circle
8:21
when I actually was a patient for the first time
8:24
sort of
8:26
benefiting from all of the
8:28
the hard work that sterile processing professionals do
8:31
knowing that my surgeon was super talented
8:33
but there was a whole team of people behind her
8:36
who had to do their job well
8:37
in order for her to be successful
8:39
it just was that moment where I was like
8:40
holy cow this is why I do what I do
8:43
and so
8:43
I had been speaking in the healthcare space for many
8:47
many years prior to diagnosis
8:49
but I spoke about things like
8:51
how to pick the proper cleaning brush
8:53
for your surgical cannulas and um
8:57
you know
8:58
endoscope reprocessing and very niche clinical content
9:02
um and that was sort of my my space
9:07
but when I was diagnosed
9:09
I just felt this call to do something
9:12
um that sort of transcended industry
9:15
and so I put together a keynote talk about
9:17
the preciousness and renewability of time
9:19
cause to Lucy's point
9:20
like all of a sudden
9:21
this terrifying thing happens
9:23
and it's pure chaos in your brain
9:26
and outside of your brain
9:27
because you're trying to learn a new language
9:29
essentially
9:30
trying to figure out what all these acronyms are
9:33
and what all these medical terms are
9:34
for a cancer I didn't even know existed
9:37
and so now it's you know
9:39
you're presented with an opportunity to either lean in
9:43
or let it completely derail you
9:46
or figure out a way to find balance
9:49
and in order to find that balance I
9:52
I took my love of public speaking and
9:55
and
9:57
really put a lot of energy
9:58
into building a keynote talk
10:00
about the preciousness and renewability of time
10:04
and sort of a call to action for people to
10:06
to assess how their life and how their energy is
10:11
is being shared and to figure out if it's being shared
10:15
with the things that are high on your values list
10:17
because when I did that assessment after diagnosis
10:21
I was like well crap
10:22
I'm I'm sharing a lot of time with stuff that just
10:25
does not matter um
10:27
in the grand scheme and so it was that
10:29
that re evaluation that really helped
10:31
sort of catapult me into the keynote speaking space
10:34
and really help me find a topic that meant something
10:39
like bones deep to me
10:41
and was really easy to share and connect about
10:44
when I get in front of an audience of people
10:46
so that's that you know
10:49
that's one of the ways that I've sort of
10:53
made the energy that I had been feeling
10:55
that kind of like scared
10:57
chaotic like
10:58
fearful energy like
11:00
sort of gave it direction and gave it purpose
11:01
and sort of
11:03
allowed it to shift into something really positive
11:05
and really serving
11:08
yeah no
11:09
and I've heard Lindsay's talk um
11:11
just in recordings and in her like
11:13
hearing her talk about it
11:14
and just little clips on Instagram
11:16
and it's really such a good
11:19
solid reminder of like
11:20
why it's so important to be present right
11:23
like to be present with our lives and to um
11:26
like I love what you said about values
11:27
like to choose like
11:28
what is it that we value
11:29
and I think at the end of the day
11:30
that's what giving your diagnosis direction does
11:33
it's assigning some level of like
11:35
high value to like
11:36
what's the most important stuff in your life
11:38
um and then using
11:40
you know those things um
11:43
as I don't want to say like
11:44
a reason to keep living right
11:45
like because obviously
11:47
like we
11:47
we obviously all want to keep living um
11:50
but sometimes the fear can overshadow everything else
11:54
and I think that that's
11:56
that's really kind of where this comes
11:58
full circle for you know
11:59
each of us is that we found some way to combat the fear
12:04
um and because
12:05
you know it's
12:06
it's not like we don't feel the fear
12:07
like I'm
12:08
I'm positive each of you still feel the fear
12:10
I think like
12:11
Luce you talked about
12:12
like one of the times that you had scans recently
12:14
and how kind of just how messed up you felt
12:17
like anxiety wise
12:18
you just felt like you couldn't focus on anything and
12:20
um like
12:21
I know
12:22
Linds and I talk a lot about what we have going on
12:24
treatment wise with metastatic disease
12:26
and that's that's a whole new level of fear
12:28
um it was scary when it was just scans
12:31
and it's a whole lot scarier
12:32
when there's actually stuff going on
12:33
and you have to like
12:34
be figuring that out and it's
12:36
it's not like one is more scary than the other
12:39
but it's it's just a different type of feeling
12:41
um but I
12:42
I think that finding those ways
12:45
those little like
12:46
little ways
12:46
that we can give ourselves something else to focus on
12:49
is huge um
12:52
I'm I'm a little in the camp of Lucy
12:54
um I ended up about six months in my diagnosis
12:58
into my diagnosis with just my eye being diagnosed
13:01
um my boss found me on
13:04
on Instagram and
13:04
and on Facebook and she was like
13:06
you know you're really doing such a good job
13:08
of sharing your story like
13:10
you have such a good um
13:11
a good audience and like
13:12
people seem to really listen to what you have to say
13:16
and I was just like
13:20
I mean I don't know
13:21
like I just am essentially sharing vulnerable things
13:24
like I'm just sharing my vulnerable story
13:26
um but that was
13:29
I guess it it all kind of
13:30
started with the idea that
13:32
I wanted to be able to share my story
13:34
in a way that you know
13:35
hopefully what I was doing
13:37
how I was navigating this diagnosis
13:39
could eventually be somebody else's survival guide
13:41
like in the future
13:42
I don't know if that makes any sense um
13:45
but that was kind of why I was posting right
13:48
why I was posting on social media and um
13:52
and posting on social media
13:53
in some ways was a little bit of like a diary
13:56
but it then kind of shifted and evolved to really
13:59
heavily working in advocacy
14:00
and working with A Cure In Sight
14:02
to be an advocate for our disease
14:04
but also to be an advocate for patients
14:05
like to help their voices get out there
14:08
and so
14:08
we gather a lot of patient stories on the Eye Believe
14:11
Podcast and that's
14:12
that's been like
14:12
a passion project of our team
14:14
to make sure that we can give patients a voice
14:16
all across the world and it's
14:18
been such an honor
14:19
to be able to connect with so many patients
14:22
and I like
14:23
I mean there are absolutely sometimes right
14:25
that I I kind of want to stick my head in the sand
14:27
and just pretend ocular melanoma doesn't exist
14:29
but then I get back into another interview
14:31
or I'm at an event
14:33
or I help host the 5K here in Scottsdale
14:35
or just whatever it is I meet another patient
14:37
and even though like
14:38
it can be emotionally taxing to like
14:40
be present for some of these people
14:42
and with these other the people in our community um
14:45
and even just to like learn right
14:47
because I learn a lot from talking with the doctors
14:49
and talking with the people who are in um
14:51
Pharma and doing like
14:52
the biotechnology research
14:54
I learn so much and
14:56
and like the
14:56
the mental weight of all of that can sometimes be a lot
15:00
um but I've learned over the last five years like
15:02
how to set good boundaries for myself um
15:06
and when it all kind of comes back to
15:08
you know do I want to not do this anymore
15:10
the answer is like no
15:11
like I
15:12
this is part of what makes me feel like
15:15
I don't know like there's
15:15
there's a reason for ocular
15:17
you know for
15:18
for me to be involved right
15:19
like there's a reason
15:20
and that I have something really unique
15:22
to contribute to the ocular melanoma community
15:24
and that meaning right
15:26
that that choice um
15:27
to believe that my voice matters
15:29
is huge in how I approach my own care
15:33
right because I have um
15:35
I have a ton of of people in my corner
15:37
of course like
15:37
in just knowing people but
15:39
but I have learned so much
15:40
and I see the value of like
15:42
giving people their you know
15:43
their voice back and
15:45
it makes it that much easier for me
15:46
to advocate for myself like
15:47
in a medical setting um
15:49
so like
15:49
there just are like
15:50
real life consequences of choosing
15:53
you know to do something specific um
15:56
with your diagnosis and it
15:58
like I
15:59
I don't like I I
16:00
I think you know
16:01
I obviously work in ocular melanoma right
16:03
that's my job Lucy
16:04
like that's
16:05
that's what you do right now
16:06
like your whole schooling career is
16:07
is on the
16:08
the biological research behind ocular melanoma
16:11
like the cellular level of this
16:13
but Linds like you don't specifically keynote
16:16
for people who are only ocular melanoma patients
16:20
right like
16:20
you speak to audiences all across the country
16:23
so
16:24
yeah go ahead
16:25
yeah well
16:26
what's interesting though is like
16:27
I feel like I'm being put in front of audiences
16:30
where
16:31
there's some sort of connection to ocular melanoma
16:34
there have been multiple times where
16:36
you know after one of my keynotes
16:38
someone comes up to me and is just in tears
16:40
because they too
16:41
have ocular melanoma and there has been
16:44
you know times where I inadvertently sat
16:47
next to a woman
16:48
who recently lost her daughter to ocular melanoma
16:51
right before I gave my keynote
16:52
and we didn't realize it until
16:54
after the keynote was done
16:55
so things like that happen all the time for me
16:59
so even though like
17:00
the topic has nothing to do with ocular melanoma
17:04
I sure I share part of you know
17:06
I share part of my story
17:07
in a very small part of the presentation
17:11
but the overall takeaway
17:13
has nothing to do with ocular melanoma
17:14
so to find myself
17:18
you know universally put
17:21
in front of people who could relate
17:26
on a different level has been such a gift to me too
17:29
because it makes me feel like I'm doing
17:30
exactly what I should be doing uh
17:32
and exactly what I was meant to do
17:34
so yeah
17:35
it's it's been really cool
17:36
yeah no
17:37
it's it's such a unique um
17:39
experience I think
17:40
to just
17:40
really lock in with what you think your purpose is
17:43
right yeah
17:44
um and I think that's
17:46
that's maybe one of the gifts right
17:47
like this diagnosis could be really debilitating
17:49
for each of us
17:50
and we could just ignore it the whole time until it
17:54
you know
17:54
shows up for scans or shows up for a doctor's visit
17:57
and it's not that
17:57
that's necessarily the worst thing you can do
17:59
it's just that
18:00
I think that the experience we have with life
18:03
is infinitely different um
18:06
Lucy what were you gonna say
18:08
um I I didn't have anything in particular but um
18:11
that that was making me think very much like
18:13
personally I feel like my doctor was really I
18:16
the way that he sort of approached me
18:19
I think because I got my like
18:22
test results back and it showed
18:23
I'm pretty much the best prognosis you can get
18:25
and I think he really was hoping that I would just
18:28
sort of like
18:28
go off and not think about it
18:30
you know I was always like
18:31
oh like
18:31
you know should I do this
18:32
should I do that he was just like
18:33
just go home and like
18:35
like you're like
18:36
like don't worry about it
18:37
go live your life yeah
18:39
and of course no
18:40
like I didn't do that
18:41
I did the exact opposite of that
18:43
um but I think for me personally
18:45
I'm somebody who just takes great comfort in like
18:47
really understanding what it could happen
18:51
you know and like
18:52
I honestly I feel like Danet
18:53
one thing that really like
18:55
I love about how much you post is like
18:57
I feel like there's so much
18:58
it feels like it's like behind a screen around
19:01
you know what is metastatic disease like
19:03
and like actually seeing like
19:05
this is what this treatment is like
19:07
this is what you know
19:09
like you're gonna have this like
19:10
scar right here and a bruise right here
19:12
it's like it makes it so that like if
19:14
you know if that ever happens to me
19:15
I'll know what to expect
19:16
and I feel like part of the research is sort of
19:19
taking control of like okay
19:20
I kind of know what to expect and
19:22
and that gives me a lot of comfort
19:23
obviously not everybody would feel the same way
19:26
but I feel like that was something that
19:28
really worked for me
19:31
well
19:31
I wanna draw a point to something that you just said
19:33
you said control right
19:35
it gives you some sense of control
19:37
and I think that that's something that each of us
19:39
in giving in giving your diagnosis a
19:41
some kind of direction like give
19:43
you know giving yourself a direction to follow
19:45
whether it has to do with your diagnosis directly
19:47
like working in the advocacy space
19:49
or working in research or just because of
19:52
right as a result of your diagnosis
19:54
that you lean into doing something that kind of fit
19:57
you know fits your purpose
19:58
fills your cup differently
20:00
um I think that the the
20:03
the thing that maybe makes that the most helpful
20:06
is this idea of controlling something right
20:08
it becomes something like
20:10
something that you have some level of control over
20:12
I don't have control over what looks like
20:15
you know what my scans look like
20:16
or what my blood tests look like
20:18
I don't have control of
20:19
of exactly how well I respond to treatment
20:21
those kinds of feelings that fear that comes up
20:23
the uncertainty is so it's so frustrating sometimes
20:28
because I'm definitely a control person
20:30
I like to have control
20:31
and to have something to put my focus into that I
20:35
I can control right
20:36
I can control how much I show up to my job
20:38
I can control
20:39
choosing the patients that I want to interview
20:41
or talking to the doctors
20:43
there's a lot of things that I get to control
20:45
within the scope of what I do
20:47
and where I've found a lot of meaning and purpose
20:50
and I think that that
20:51
that sense of control getting it
20:53
it's like taking your power back
20:55
um and I think that's so important for each of us
20:58
yeah it looks like you've got something to add
21:00
yeah yeah
21:01
well along with control
21:03
it also gives you a sense of like
21:07
it keeps you from that feeling of like
21:10
if I'm gonna die soon what's the point
21:12
it keeps you out of that spiral
21:14
to have something to
21:18
to push yourself with and to challenge yourself with
21:20
and to to plan for and to like
21:23
you know set goals around that are very future forward
21:28
because with something like this
21:29
it's really easy to get stuck in that spiral of well
21:33
what's the point because the prognosis for this is
21:35
is not good and I know all the
21:38
the statistics that exist
21:39
and you know
21:40
if you're part of any of the online groups you
21:43
you see you know
21:44
the people who lose their lives to this disease
21:46
and it's like
21:48
it's really easy to get stuck in all of that
21:54
and get stuck into that part of diagnosis
21:56
and I think
21:57
part of finding purpose in your diagnosis
22:00
is being able to see a path forward
22:03
and I think that that's just such a healing um
22:09
sort of
22:11
I don't know it's like a healing exercise almost um
22:15
to just allow yourself to dream a little
22:18
yeah no
22:19
I think that's you mentioned forward focus
22:21
and I think that's also really
22:23
really important
22:24
it's so easy to get caught up in the fear and the
22:28
what's you know
22:28
when's my next scan what's it gonna show
22:30
is my eye tumor shrinking
22:32
are my liver tumors shrinking
22:33
like what's going on
22:34
it's so easy to get caught up in that being kind of
22:37
like what you live for
22:38
but if you have a purpose
22:40
right if you have given yourself some kind of direction
22:43
outside of your diagnosis
22:44
right I
22:45
I like I
22:46
I can't remember which interview it was
22:47
that we were doing but I was
22:48
I've talked a few times about this idea that like
22:50
we don't have to give cancer
22:51
any more time than it's scheduled for
22:54
right yeah
22:54
and so when I say that I mean like
22:56
all of the scary things right
22:57
all of the doctor's appointments
22:59
all of the scan the scan anxiety
23:00
all of it like
23:01
we don't have to give it more attention
23:03
than it is scheduled for
23:04
but if we don't have purpose and you know
23:07
a sense of direction outside of it
23:10
then
23:10
it can really feel like it's driving your whole life
23:12
because it's like you're just living for the next scan
23:14
you're living between things
23:16
and if you can kind of flip the focus
23:18
and find things to plan for in the future like
23:22
I mean I
23:22
I find a lot of comfort in just thinking forward
23:25
even if it's just a couple months
23:26
right like a oh
23:27
we're gonna take a family vacation in a couple months
23:29
I'm looking forward to that
23:30
um
23:32
anyway so Lucy
23:33
I kind of wanted to ask you
23:34
I mean we don't have to quote exact studies
23:37
but
23:37
I guess my understanding is that patient's attitude
23:40
and mentality and just our mental state
23:42
can really heavily influence our immune systems
23:45
um and that
23:46
you know there can be a positive correlation
23:48
not necessarily that like
23:49
having a good attitude is gonna
23:50
like cure your cancer but
23:52
but just this idea that people who are
23:55
I guess
23:57
not so down in the dumps or maybe just not so
23:59
caught in the pit of despair all the time
24:00
like they're gonna respond better to treatment
24:02
they're gonna feel better
24:03
they're gonna have better quality of life
24:05
like those kinds of things
24:06
so I don't know
24:07
like just from an immune system standpoint
24:09
like do you think there's good value in
24:11
in giving yourself purpose and goals and all of that
24:15
yeah I mean
24:15
I definitely am not an expert in the
24:17
in the topic but certainly like
24:19
I mean so
24:20
chronic stress sort of convinces your body that there
24:24
your your immune system
24:25
that
24:25
has more important things to focus on than healing and
24:29
you know whatever that may be either
24:31
you know help
24:33
helping you be in the best state you could be in
24:35
to get a therapy
24:36
or maybe your immune system might be weakened by like
24:40
if you're if you're stressed and thinking
24:41
you know it might be basically
24:44
you know in
24:44
in history right
24:46
if you're really stressed all the time
24:48
it might be because there's
24:48
like a bear right outside of your cave or whatever
24:51
right forgive my example
24:53
um no
24:54
it's fine and so you're not gonna be thinking
24:55
your body is not gonna be like OK
24:57
how do we prevent cancer right now
24:59
it's more like OK
25:00
what do we need to do to survive this immediate threat
25:03
and like
25:03
constant anxiety fearing your next scan
25:07
you know it
25:08
our brains can't really distinguish between
25:10
you know a bear outside the cave and like
25:13
a scan coming up doesn't realize that
25:15
those are totally different stressors
25:17
and so it still might
25:19
you still might be fearing the scan
25:20
and it's still making your body go
25:23
let's focus on this immediate threat
25:24
and not focus on taking care of our
25:28
you know cellular health
25:29
um and so obviously I don't wanna like
25:32
it's hard to say like
25:33
oh don't stress
25:34
you know I think my doctor was like
25:36
reduce stress and I was like
25:38
are you kidding me
25:40
that's definitely such a tricky thing and
25:42
and we don't need to get like
25:43
tons into that but
25:44
but it's not so much this idea that like
25:46
you know we shouldn't ever feel stressed
25:48
because that's impossible
25:49
we're gonna feel fear
25:50
we're gonna feel the stress of our diagnosis
25:52
and so you guys listening like
25:53
please don't take that as like
25:55
don't feel stress stress is bad
25:56
like I feel like
25:57
that's one of the worst things
25:58
that anybody says to cancer patients
26:00
it's like no
26:01
don't tell us that like
26:02
we can't we don't need that
26:04
all that does is add to our stress
26:05
thanks
26:07
exactly but it does
26:09
it does really make such a big difference
26:11
I think
26:11
just in your ability to show up to your treatment
26:14
to show up to your doctor's appointments if
26:16
if it's not as scary
26:18
feeling because you've done the work
26:20
or you have you know
26:20
maybe a different focus outside of it
26:22
you have something to look forward to
26:24
um there's a lot
26:25
I mean I mean
26:25
feel like there's a lot of benefits to
26:27
just the goal setting and the forward focus
26:29
um but Lynn's
26:31
I look like you might have had something else to add
26:34
oh yeah
26:34
it's just related to that
26:35
that idea of fear um
26:37
that's one of the things that I
26:39
that I talk about in my keynote
26:40
is fear being an acronym that stands for
26:43
forgetting every Available Resource
26:46
and like
26:46
I can't tell you how many times I've heard phrases like
26:51
fear and hope
26:52
are both about something that hasn't happened yet
26:54
and like
26:55
you get to choose you know
26:57
which which one you
26:59
you wanna you know
27:00
make your reality and you know
27:01
things of that nature
27:02
but I think when you feel those big
27:04
scary feelings like fear
27:07
I think
27:08
one of the things that's been super helpful to me is
27:10
like okay
27:11
I'm I know I'm feeling fear in this moment
27:13
like what resources am I forgetting about
27:16
that can help me cope that can help me prepare
27:19
that can help me feel calm
27:20
that can help my nervous system adjust
27:22
like there's just a lot of power in understanding that
27:28
I'm feeling this big scary feeling
27:30
about something that hasn't even happened yet like
27:34
and that I don't know the outcome to
27:36
and so is that where I want to shift
27:39
to put my energy and ten times out of 10
27:42
it's a no for me dog
27:46
no like
27:47
you don't you don't need to suffer twice
27:48
like that was one of the things right yes
27:51
ago she was like when you're feeling anxiety
27:52
about something that hasn't even happened
27:54
when you're like
27:55
kind of catering to fear
27:57
you're basically just feeling the
27:59
you know that you're feeling it twice
28:00
you don't need to feel the devastating fallout
28:03
of something that hasn't even happened
28:04
or been confirmed um
28:06
I think that's where I think
28:07
I can't remember which of you
28:08
I think it was Lucy I think you mentioned like
28:10
some healthy level of of
28:11
like denial
28:12
I think that's where denial comes in
28:13
but it can be healthy it can be healthy to be like yeah
28:16
but that's not really real
28:17
like that's
28:18
you know I
28:19
I think that was where I lived like
28:20
when I first had news that I had metastatic disease
28:23
it was suspected it wasn't confirmed with a biopsy
28:25
and I basically spent the entirety of the next 2
28:27
3 months of
28:28
from August to when it was biopsied in November
28:31
maybe that's more August to September
28:34
September to October October yeah
28:35
three months um
28:37
I spent the entirety of that time basically like
28:39
I mean until they do a biopsy
28:41
and they confirm that this is melanoma
28:42
like I don't believe it
28:44
it's innocent until proven guilty like
28:46
and and that helped because it
28:48
it switched the fear from
28:50
being something that I was constantly thinking about
28:52
to just
28:53
being able to be present
28:55
with what I had going on in life and
28:56
and I think that you know
28:57
when we when we give ourselves some kind of direction
29:01
um outside of just focusing only on ocular melanoma
29:04
that's that's the whole point right
29:06
it helps us to be more present with our life
29:08
and to be more present with the people
29:10
who are important in our lives
29:12
and that is such a gift
29:14
I feel like every patient I've ever talked to
29:16
they always talk about how important presence becomes
29:19
and I think sometimes it becomes
29:21
it becomes something we get
29:23
I don't know like we
29:24
it the initial event right
29:27
the initial event of being diagnosed
29:28
is something that triggers this
29:30
desire for more presence
29:31
and then the longer you go in your diagnosis
29:34
you know if you have waves of stability
29:35
or you have things that change
29:37
like you experience different levels of
29:40
how present do I need to be
29:41
and sometimes we just I mean
29:42
it's it's human nature
29:43
I think we just forget you know
29:45
like we just forget like
29:46
why it was so important to be present and to um
29:50
spend our time like
29:51
where it's most valued
29:53
I love what Lucy said earlier
29:54
where it's like eventually
29:56
you get to a point where you're just
29:57
existing in this new normal
29:59
and you're not sure when that switch was made
30:01
there's not one moment or one day
30:03
that you can pinpoint where you're like oh
30:05
that was the day this became normal
30:08
but it's true you
30:09
you do get to a point where it's like
30:11
well this is just like
30:13
these are the cards I was dealt
30:14
and it is now in my power and in my control
30:20
to either do something good with it
30:23
or let it destroy me and I think that that's a choice
30:26
it's a hard choice and it takes a lot of energy
30:28
and do I still have spiral days
30:30
100% for sure
30:33
and I now have you know
30:36
coping mechanisms that can pull me out of those spirals
30:39
one of them being my husband
30:40
he is my most powerful coping mechanism
30:43
to get out of those spirals
30:45
um but yeah
30:46
it's it's kind of interesting
30:48
when you think about it in those terms
30:49
like it
30:50
it doesn't ever stop being scary
30:53
especially when you have a scan coming up
30:55
or especially if you have a
30:56
a clinic visit coming up that you don't know
30:58
you know what's gonna be said or shared with you
31:01
and also like
31:03
then you leave those visits
31:04
and you go back to your new normal
31:07
and hopefully do something that brings you joy
31:10
yeah um
31:12
I feel like it comes down to like
31:13
ultimately some degree of acceptance
31:17
right that there's kind of
31:18
varying degrees of acceptance that we go through
31:20
as a cancer patient and
31:22
acceptance is such a huge piece
31:24
of being able to navigate our disease
31:25
no matter where you are
31:26
and no matter how many times it's changed
31:28
right like
31:28
you can you can be
31:29
navigating
31:30
all of the roller coasters of metastatic disease
31:32
and you're still gonna have to find some level of
31:34
accepting what is happening
31:36
and that you just have to accept that it is what it is
31:39
um it doesn't mean
31:41
like I
31:41
I feel like acceptance sometimes gets confused
31:44
for this idea that like
31:45
well that means that I'm just giving up
31:46
right that I'm accepting what it is
31:48
and that means therefore I
31:49
I don't believe I have the power to change it
31:51
or I don't believe that something else could change it
31:53
I don't think it's that at all
31:55
I think it's just that
31:56
you stop dwelling so much on all of these things
31:59
that are outside of your control
32:00
that ultimately just make you miserable to focus on
32:03
yeah
32:03
and you start focusing on the things that bring you joy
32:05
you start focusing on the things
32:07
that you're passionate about
32:08
and when you focus on those things
32:11
the other stuff is still there
32:12
but it's just not as big and
32:14
I think that's really what is so powerful
32:16
about having purpose outside of just oh
32:19
I've got to get to my doctor's appointments
32:22
yeah it's really easy to just take ocular melanoma
32:26
and put it on as your new and solo personality
32:30
um because it is a rare cancer
32:33
and because you know
32:34
the people around you are well meaning
32:36
and likely asking how you're doing with everything
32:38
and what's the latest in treatment and like
32:41
all of these things so you're constantly reminded that
32:43
that that is a big part of your life
32:46
even if you don't feel that
32:48
you know on any given hour of the day
32:52
you have that constant reminder
32:54
and I think it was really freeing
32:57
when I finally started to feel
32:59
like
33:00
ocular melanoma wasn't the only thing that defined me
33:04
um
33:05
and it took a while to get there
33:09
so now that you have gotten there
33:11
um for the most part
33:13
I think we're kind of sometimes evolving in that
33:15
in that department
33:17
but now that we've maybe gotten to that point where
33:19
like we no longer feel like
33:20
ocular melanoma defines us as a person
33:23
like where
33:24
where do you feel like you're at right now Lucy
33:26
um like
33:27
in terms of just coping with your diagnosis and um
33:30
you know dealing with the curveballs that can come up
33:33
while also still you know
33:35
keeping that forward focus
33:36
um like
33:37
I guess what what keeps you going every day
33:40
I mean I think
33:41
like in terms of
33:42
I guess that like
33:43
a little some stuff I've been thinking about
33:46
as we've been talking is like
33:47
I was kind of thinking like
33:49
you know a lot of times I
33:50
I think about like
33:50
why exactly am I researching this disease
33:53
is it because like
33:54
I wanna come up with a therapy
33:55
that's gonna save my own life
33:56
maybe down the line like realistically
33:59
no like realistically
34:00
like I know that science moves too slow for that to
34:04
like you know
34:05
the timing to even make sense there
34:06
is it like
34:07
is it hoping to make treatments for other patients
34:10
maybe in the future like certainly
34:12
but a lot of the time
34:13
I'm just doing my job because it's my job
34:15
you know like
34:16
like I chose like
34:17
like day to day
34:18
I'm not thinking about my own life
34:20
other people's lives like
34:21
I'm just thinking about
34:22
how to get my stupid cells to behave or like
34:25
this assay to work and I feel like it's
34:28
it's so funny cause I think at first
34:30
obviously it was like kind of loaded
34:32
I was like am I gonna like
34:34
I work myself to death
34:35
trying to get something out of this
34:37
and like
34:38
part of it is that's just not me
34:40
like I'm just not that kind of person
34:42
I was never gonna be a workaholic
34:44
no matter how much you know
34:46
it really meant and so
34:48
I think I've been really blessed with
34:50
maybe a good temperament about it
34:51
and being able to like
34:52
really separate it from my life a lot of the time and
34:56
and just having it be a job
34:58
you know and that I love
35:00
and then you know
35:01
when it every time
35:02
every once in a while like
35:03
situations like these I can and
35:05
and at the care and site you know
35:07
I like
35:07
I believe conference I can really see like what
35:10
like who is this impacting
35:11
like
35:12
who can this who can this benefit
35:14
and you know
35:15
I think that's sort of my like
35:19
you know
35:19
after some time has passed and I'm a little bit
35:21
you know I'm
35:22
I actually you know
35:23
I think with you know
35:24
I'm three years after treatment at this point
35:28
you know that's sort of like
35:29
with my settled into my new normal
35:31
yeah for sure
35:32
oh I think it's so interesting
35:34
and it's honestly it's
35:35
it's super inspiring for me to like observe
35:39
um just the various patients that I see
35:41
who have some level of involvement
35:43
either in ocular melanoma
35:44
or just have found some way to just kind of
35:48
contribute to the greater world
35:49
I think um
35:51
and just kind of leave their mark
35:53
and I think it is so it's so special like
35:56
it's kind of like each of us has
35:57
I mean we all have our own fingerprints
35:59
and the imprint that we leave
36:00
on the lives of the people around us
36:02
is so unique and so
36:03
I mean Lucy is a researcher
36:06
Linds is a speaker like
36:07
I do advocacy work and I guess
36:09
you know I
36:10
I do what I do here like
36:12
neither of us or none of us
36:13
are more important to the world than the other
36:15
but we are all contributing in some unique way
36:19
um so Linds like
36:21
for you you know
36:22
you're in the middle of metastatic management
36:24
dealing with metastatic disease
36:26
what what does the
36:28
you know the gift of having developed a keynote and
36:31
and being a speaker what does that give you now
36:34
in the middle of dealing with clinical trials travel
36:37
all the fun things that come with getting treated
36:40
yeah well
36:41
what's really powerful is like
36:43
I need the reminder too
36:46
to be intentional and to be present
36:48
and to approach time
36:50
as though it's not the villain in my story
36:53
uh and so every time I give my keynote I
36:56
I walk away and I'm like oh
36:59
I forgot you know like
37:01
like maybe it had been a couple
37:03
you know really hard months in between
37:05
and so giving the talk to
37:07
and seeing other people connect to the message
37:10
is only a part of it like
37:12
I also need those same motivations and inspirations
37:17
that I talk about and so it's been such a gift to um
37:21
to see other people connect to it
37:23
but then also have sort of a scheduled reminder
37:26
and a scheduled
37:27
almost like a self therapy session for myself
37:30
when I'm on stage to just be like yeah
37:32
this is the reason like
37:34
these are the reasons why you're
37:37
you're shifting your mindset
37:38
and you're being more intentional
37:40
and this is why perspective is so important
37:43
and I mean Denay
37:45
you're in the same boat as me
37:46
we have young kids watching
37:48
we have young kids watching our process
37:51
and our healing journey
37:52
and watching us navigate something that's really
37:55
really hard
37:57
and in my mind
38:00
them being able to see me
38:01
still do the things that I love to do
38:03
and that bring me joy
38:05
and that bring meaning to my life um
38:08
can
38:09
like is in real time
38:11
teaching them that they can also do really hard things
38:14
and still be okay
38:16
uh and that
38:17
to me I think
38:17
is the most powerful thing in all of it is like
38:21
my kids get to see me still be okay and still thrive um
38:27
even in the midst of everything
38:30
that is metastatic treatment management
38:34
oh I love that
38:35
and I think that's so important
38:37
um and I'm gonna kind of just echo what you said
38:39
you know for me um
38:41
the reasons maybe that this still
38:43
is something that I find so much value in
38:45
as a patient is
38:47
I mean I
38:48
I get to be really on the
38:51
I don't know the front row seat to hope
38:53
I think and um
38:55
and that comes from talking to patients
38:57
and hearing people's stories
38:59
hearing like
38:59
incredible stories of people's survival right
39:01
people who beat all the odds
39:03
right and who are still here today
39:05
or just to hear of them um
39:07
but also to hear and just talk to
39:09
and develop relationships with
39:11
doctors who are currently researching this disease
39:13
and with the pharmaceutical companies
39:15
who are investing in trials
39:16
and trying to make sure that we have treatments and um
39:20
but as a patient I mean
39:21
it really gives me I think
39:23
a front row seat to hope because I can in some ways
39:28
like I feel a little selfish
39:29
because sometimes I find out about things right
39:31
I've known about like
39:32
the trial that you're on Linds
39:33
I've known about it for probably a year and a half
39:36
but I wasn't really able to like
39:38
super talk about it
39:39
because it wasn't recruiting actively in the States yet
39:41
it was still only in Europe
39:43
but knowing that things are coming and having um
39:46
having the ability to connect with doctors who are
39:49
you know making sure that I am aware so that like
39:52
we can talk about it in the future
39:53
and we can get that knowledge out to patients um
39:55
it's so rewarding and and also like
39:58
helpful for me when I'm in a dark place
40:00
or when I'm feeling really frustrated
40:01
it it reminds me that like okay
40:03
like we have not exhausted
40:05
like to quote a book
40:06
Lynn's you'll know which book it is
40:08
but like
40:08
to quote a book like it
40:10
it is not like
40:11
we have not exhausted every possible path yet
40:14
and I think that's so helpful to me
40:16
and that's I mean
40:17
that's kind of the definition of resilience for me
40:19
is that okay
40:19
we're gonna follow every possible path
40:21
we're gonna get up every single time that
40:23
you know we get knocked down
40:24
it doesn't mean that it's easy
40:25
it doesn't mean that you're not like
40:26
clawing your way to the surface sometimes
40:29
but like
40:30
it is possible and um
40:32
I can't remember I think it was my mom
40:34
she said something about like
40:35
you have 100% record
40:36
like 100% track record for getting back up
40:39
every single time you've had something hard
40:40
like a new kind of thrown at you
40:43
be it from cancer or otherwise
40:45
like you have 100% track record of making it through it
40:48
and so like
40:49
that is that is such a
40:51
a good reminder I think
40:52
especially because I think our brains kind of
40:54
trick ourselves into thinking oh
40:56
like we've never handled this situation before
40:58
so therefore like
40:59
what do I do what do I do
41:00
what do I do like
41:00
I don't know um
41:02
but I do really feel like having the
41:05
the space that I have to you know
41:07
to work in and show up
41:08
even if I don't have the capacity to do that
41:10
as much as I would like to sometimes um
41:14
it still is such a helpful thing
41:15
for making sure that I stay in the mindset of like
41:19
hope and belief in the future
41:20
and um
41:21
and I think you know I
41:23
I also
41:24
I think it's so important for my kids to be able to see
41:27
that I didn't just
41:30
I don't wanna say well yeah
41:32
like that I just didn't
41:33
I didn't just cave to fear
41:34
I think that is that is what I want them to
41:37
to grow up seeing and whether I survive to be 98 or not
41:42
like I want them to know that their mom showed up
41:45
and that their mom showed up for them
41:46
but also showed up for herself
41:48
um and I think that giving your diagnosis direction
41:50
like that's really what it is
41:51
it's showing up for yourself
41:53
and each of us deserves that
41:54
every single one of you listening
41:56
you deserve to show up for yourself in some way
41:58
and if you haven't figured that out yet
41:59
like it's really okay
42:01
um so anyway
42:03
you guys I'm so glad that we were able to do this
42:05
and that we can have this conversation
42:06
um if there's
42:07
I guess I wanted to just end
42:09
and let you guys each share one thing
42:10
like couple sentences of
42:12
like one thing
42:12
that you would want somebody else listening
42:14
to take away um
42:15
if they're maybe in a similar spot as you um
42:18
and then we can end from there
42:21
uh Lucy
42:21
do you wanna go first
42:23
oh let me think okay
42:24
it's okay take a sec
42:26
I I feel like one side of it
42:27
at least it's been really helpful for me lately
42:29
is realizing that I've I can practice
42:32
you know just cause one scan
42:35
like 1 1 scan week
42:37
I was just freaking out a mess
42:39
you know I have practice
42:40
I've got more scans to come and more time to
42:43
to work on my skills and and you know this
42:46
you know and honestly
42:48
shout out to therapists for helping guide that stuff
42:51
but like you
42:52
you know just cause you don't
42:54
you know just
42:55
cause sometimes you do cave to fear
42:56
and sometimes you do you know
42:58
totally lose it doesn't mean you can't learn from that
43:01
and and
43:02
you know you know
43:04
the next time do better
43:05
like you have time to practice
43:07
and it's fine if you don't get it right the first time
43:10
I love that thank you
43:11
um Linds
43:12
what about you
43:13
yeah I just want to encourage everyone
43:15
and remind them that giving purpose to your diagnosis
43:18
doesn't have to be some big
43:20
grandiose thing like
43:22
you don't have to become a researcher
43:23
and you don't have to become a public speaker
43:26
like you can
43:27
you can simply do things like
43:29
my family and I started doing stay alive trips
43:32
where we plan you know 8
43:33
12 months out for something really
43:35
really special
43:37
and even doing something really simple like that
43:40
and giving you some
43:41
giving you and the people around you
43:42
something to look forward to
43:43
can be really motivating and really powerful
43:46
um so I
43:47
I don't want any takeaways to be wow
43:49
I gotta figure out what my
43:51
what my life's purpose is with this diagnosis
43:53
like it can be something small
43:55
it can be like
43:56
this week I wanna find joy in learning a new skill
43:59
or this next week
44:00
I wanna find joy by starting that book
44:02
that's been on my list for the last couple of years
44:04
like it
44:05
it can be those simple pleasures that
44:07
that really do add up yeah absolutely
44:10
and shout out to therapy and also shout out to books
44:13
like yeah
44:14
because I feel like yeah
44:15
sometimes books have been therapy for me
44:17
they've been so good
44:18
and I think you guys are two of the people that
44:19
we all read some of the same books
44:21
so yeah guys
44:22
books make a really big difference
44:23
like you can put yourself in the story
44:25
in such different ways as a cancer patient
44:29
um anyway
44:31
oh you guys
44:31
thank you so much for listening
44:32
thanks huge thanks to all of our listeners um
44:35
and to our guests Linds and um
44:38
Lucy thanks so much for speaking and for being really
44:42
just being part of this panel and this discussion
44:44
um I
44:44
I echo what Linds said at the beginning
44:46
like
44:46
I really hope this is something that helps give you um
44:50
the capacity to kind of just get out of the
44:52
the spiral if you're stuck in that little spiral
44:54
um so please share this with somebody that you know
44:57
um and a huge thanks again to our sponsors
44:59
who make this podcast possible
45:01
um and they are
45:03
I mean
45:04
we really could not do what we do at as at A Cure In Sight
45:07
without our sponsors
45:08
so huge thanks to them and thanks again for listening
45:11
we'll see you guys next time
45:13
and before you go thank you
45:14
say thanks thanks to Danet for setting up this podcast
45:17
this is like you are so so dedicated to this
45:19
and I I always want to throw that in there
45:22
thank you well
45:22
thank you I appreciate it
45:24
thank you guys
45:25
alright you guys we'll see you next time