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The Patient and Caregiver Experience | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey omies welcome back I am here to chat
0:06
a little bit more about this concept
0:08
of living in the middle where you're not cured
0:11
but you're just not actively like under dire
0:14
threat immediately I guess is a good way to put it
0:17
um and I am joined with two guests um Phil
0:20
who is an ocular melanoma patient and his wife Caitlyn
0:23
who are from Pennsylvania and
0:25
I've had the pleasure of just kind of bumping into them on social media
0:28
and I'm so grateful to
0:29
both of them for having been on previously in a panel
0:32
that we had for I believe it was Eye On Mental Health
0:34
um sometime in the last little like maybe in 2025 um
0:38
they did a great job so if you haven't listened to that part of our
0:40
our different episodes
0:41
then please head back to that we'll link that in the show notes
0:44
but you guys thanks so much for being on live
0:45
um to listen on YouTube or to listen on the podcast
0:49
we cannot do this without our listeners so
0:51
and Phil and Caitlyn thank you so much for being here
0:53
of course thanks
0:55
so we've talked
0:56
kind of throughout this mini series I suppose um
1:00
about this concept right of living in the long middle
1:02
and if you haven't read the article
1:03
that I referenced when I spoke with Ashley McCrary
1:06
and again with Katie Doble um
1:08
it's referencing an article from a stage 4
1:10
lung cancer survivor who she wrote this beautiful
1:13
like she just articulated it so well this
1:15
idea of like okay you have what
1:17
has been told to be you know incurable disease
1:21
and yet you're here far longer than you expected
1:24
and doing far better than you thought you were going to be at this point
1:26
like how do we make sense of that um so Phil
1:29
do you want to just walk us through kind of an elevator
1:31
pitch of like your diagnosis especially
1:33
where you hit kind of the metastatic point and where you are now
1:36
yeah sure so actually it's a
1:39
10 years ago this month that
1:41
I got diagnosed and I live in the Philly area so
1:43
able to go over to Wills Eye um get seen right away
1:47
um so yeah I
1:48
it was about a year and a half after that that
1:50
I had an MRI and you know there was a spot on my liver
1:54
um so I it's I've been
1:56
metastatic since you know probably October 2017 yes
2:00
yeah
2:01
like I knew it was I knew it was
2:04
a long time but I think maybe the last time we talked
2:07
it kind of got locked in my head as maybe seven or eight years and I was like oh
2:11
but like you're basically
2:13
I mean I would say you're
2:14
you're closer to 10 years than not like in terms of
2:17
managing metastatic disease um and that's that feels
2:20
kind of insane that you metastasized so quickly yes
2:24
were you like did you have a biopsy at the time of your eye
2:28
yes I did have a biopsy yes um
2:31
yeah we sent it out to I think up and yep
2:35
yes I'm gonna guess it came back more on the high risk
2:38
side or was this a a surprise
2:41
yes it did we were actually just looking at that today
2:43
uh yeah no it did come back as high risk
2:45
I don't think at the time they were doing um
2:47
class 1 or class 2 or were they
2:48
well we did not have the castle testing so
2:52
Wills Eye didn't use Castle they used um
2:55
university of Pennsylvania's testing
2:57
which came back with your risk like percentage
3:00
and he did come back at like greater than a 50%
3:03
risk of spread
3:04
yeah so Caitlyn
3:06
I'm gonna jump in here with you and just kind of ask you a little bit of like what was your perspective
3:10
when all of this kind of happened um obviously
3:13
we've got the primary diagnosis
3:14
dealing with the eye but I think more more especially
3:17
how did you deal with
3:18
um both the news of him being high risk and then also
3:21
learning that he had metastatic disease
3:24
so of course I am the person who
3:27
I'm a avid reader so I went
3:29
looking for research studies went looking for
3:32
people's stories
3:33
and that's kind of what I dove into and
3:36
the first thing I did I joined a
3:39
on just cancer.net a caregiver support group
3:42
and that actually led me to the Ocular
3:44
Melanoma Facebook groups and so I joined them
3:47
pretty quickly I would say
3:49
only maybe a month or two after
3:51
Phil's primary diagnosis and that
3:54
gave me a wealth of information
3:56
of people who are living it people who are
3:59
in the throes of it and I mean most definitely
4:03
spent my time looking for the stories like Phil's
4:06
the the ones that provided hope
4:08
that it wasn't gonna metastasize
4:10
even though it was class 2 adjacent
4:13
um or those that it has metastasized but are
4:17
doing better than what the statistics say
4:20
yeah absolutely so Phil
4:22
what about you how did you make sense of all of this um
4:24
I'm gonna assume
4:25
just based on what you guys told me about the ages of your kids
4:27
that you guys were really a young family
4:29
at that point when you were diagnosed with your eye
4:32
how did you deal with this being um
4:35
I mean can I make the assumption that you were the primary
4:37
caregiver at the time
4:40
yes yes yeah
4:44
yeah sorry I don't know if I answered yeah
4:47
so I guess um I'm a mom
4:50
I'm a mom I'm mostly a stay at home mom obviously
4:52
I I work a little bit here with the non profit
4:55
um with A Cure In Sight but like largely my role
4:58
for the like the duration of even my diagnosis
5:00
has been that I was kind of the mom side caregiver
5:04
stay home you know the homemaker so to speak um
5:07
so did you you know was there
5:09
was there a point that you kind of had to shift
5:11
away from like working
5:12
outside the home or do you still work outside the home
5:16
I actually uh just this year I I um
5:20
now out on a disability because of the um
5:24
Ipi Nivo treatment and now just the
5:27
Nivo treatment I'll try to say that right
5:29
um so I mean that's actually been
5:32
great for my you know mental health um
5:34
you know being able to to
5:36
kind of have that opportunity to step back because it was just way too much
5:40
dealing
5:40
with this you know diagnosis and the all these these
5:44
tests and uh
5:47
in the hospital all the time like
5:49
it's so it's been very helpful
5:52
but he's
5:53
he stayed um working very long yeah I was going to say that's only recently
5:57
haha yes yeah with it was within the last six months
6:01
that he made the decision because of the frequency
6:04
and the side effects of the Ipi Nivo to step out
6:09
okay well let's kind of shift a little more
6:11
away from you know where we were um
6:14
maybe you know nine or so years ago and let's
6:17
let's kind of talk more about where you are now you've been doing
6:20
a host of metastatic treatments
6:21
have you participated in any clinical trials um
6:24
what like give us maybe a rundown of a few of the treatments you've had so far
6:27
so clinical trial wise I think the only
6:29
clinical trial I had
6:31
was pre metastastic when I did the Sutent versus
6:34
I forget the other medication but it was a VPA
6:37
yes yes so yeah I did like a six
6:40
I forget what the duration was but I had the Sutent
6:44
arm arm
6:46
and that I think might have been the only clinical trial that I've done
6:49
everything else has been kind of you know the uh
6:52
immuno embolizations
6:54
um for the liver
6:56
I have had some radiation
6:57
but as far as clinical trials uh just pre metastatic
7:01
so in terms of like where you guys are based I'm gonna
7:04
I'm gonna guess you guys have gone to Thomas
7:06
Jefferson or have you been able to establish
7:08
care anywhere else
7:09
Thomas Jefferson yes since the beginning that's gotta be super close to home for sure
7:14
which has got to be nice like I know I have my doctors kind of in my backyard and it's
7:18
it's a huge uplift to not have to travel like
7:20
state to state and I I do not envy any of our patients
7:23
um any of you guys who are
7:25
dealing with traveling while also going to like
7:28
I don't know is it is it Ipi Nivo and the Nivolumab
7:30
treatment now that's like every three weeks isn't it
7:33
the the IPI
7:34
Ipi Nivo yes that's every three weeks and then
7:36
the Nivo treatment you know because I've had my four
7:39
combination treatments
7:41
the Nivo is just every four weeks now so I actually just had my
7:44
last one yesterday
7:45
yeah you get a little bit of like
7:47
an extra week of a break I guess um comparatively
7:50
so that's gotta be gotta be at least a little bit nice
7:53
um well
7:55
uh this kind of concept
7:56
that we are talking about today of like living in the long middle
7:59
um where you're not officially
8:01
a cured metastatic patient but you're obviously
8:04
doing better than the average person
8:06
you know considering the different treatments
8:08
that you've had how has that changed
8:10
the way that you both relate to kind of the passing
8:12
of time and thinking about your own future
8:15
yeah that's changed a lot
8:17
when I first got diagnosed
8:18
and even a couple years after I had you know diagnosed
8:20
with a metastatic disease
8:21
I could not envision a life past my next set of scans
8:26
because I was so certain that that next scan
8:29
would be like okay your time's up goodbye like
8:31
you know and and and that's
8:33
I was that way for a while very very hard
8:36
uh but whereas now you know now I kind of have a
8:41
further window uh
8:44
where you know I can kind of probably look out a couple years and say like okay you know
8:48
that sounds good I mean it still
8:50
stings a little bit because there is that
8:52
uncertainty of you know
8:54
I I really don't know what's gonna happen but
8:56
with how I've
8:57
responded to treatment with how I've you know
9:00
been living I just feel like I I have that time um so
9:06
yeah you said I believe tomorrow will happen
9:09
like that's something when we were having the conversation
9:11
that I feel like when when we were in the beginning
9:14
that wasn't as certain to him and now he feels like
9:18
tomorrow is gonna happen so it's not maybe
9:21
as heavy correct yes
9:24
I absolutely love that so I know you Caitlyn you've probably seen me post
9:27
about the like tomorrow's add up kind of concept
9:29
um but I love this idea of like this even before
9:32
kind of coming to that place you have to just learn to trust
9:35
that the tomorrow literally
9:36
will happen to begin with
9:38
um and I love that you were able to kind of come to that conclusion
9:41
um so
9:43
and do you guys feel like you've noticed the tension
9:45
like between the gratitude you have for Phil's response
9:49
in treatment
9:50
and the weight of knowing that other people in the community
9:52
haven't had the same outcome
9:55
um
9:56
I used to and and it's not that I'm just you know
9:59
insensitive to others and uh you know I I deeply
10:03
do care about everyone that gets diagnosed and I honestly
10:06
you know of course I wish the best for everyone but
10:08
I just know that you know I am lucky uh
10:13
with you know my mutations
10:15
that I have cause I do have the
10:16
the SF3B1 mutation
10:18
uh and I know that that's helping me
10:20
you know with why I'm here today is
10:22
because I have that mutation
10:25
uh so
10:27
it it's it's
10:31
yeah no yeah so when we were having
10:33
our conversation like kind of leading up to this
10:35
you know we we named so many people that
10:38
we've met that we've
10:40
conversed with that we've connected with
10:42
who aren't here today and
10:44
even people not in the ocular melanoma world but
10:47
in other cancer worlds and um it's it's
10:52
you feel like why me not them
10:55
but at the same time that idea that
10:57
you know we're lucky and and
10:59
his interventional radiologist at Jefferson is Doctor
11:01
Adamo he's great guy
11:04
he says that he tells his fellows
11:06
it's better to be lucky
11:07
than good because there's a lot of good treatments
11:09
there's a lot of
11:10
good you know cancer centers you can go to
11:13
but really it comes down to kind of the luck
11:15
of how you're going to respond to it and so he
11:19
used that statement with us maybe about two years
11:22
ago he said I I told my fellows
11:23
this all the time and you're one of those that
11:25
has this luck um and so while it's
11:29
still heavy and you still feel guilty
11:31
that not everybody gets that same
11:33
path or that same journey you know he
11:36
at this point feels able to kind of separate that and
11:39
compartmentalize that it's not because he has that
11:41
response that others aren't having that response
11:44
yeah absolutely well and
11:46
and Phil you bring up a good point too that like that mutation
11:48
very well could play a role
11:50
and that can I think sometimes help our brain
11:52
to kind of make sense of things is like okay
11:54
let's you know if if it is somewhat luck
11:57
then sure but also maybe there's an element of science
12:00
that we just don't understand
12:01
yet that like is there but again we just haven't
12:03
figured it out we haven't uncovered it
12:05
and I think that I mean I'm I'm definitely someone who
12:07
I feel like that can help
12:09
and just trying to make sense of making sense of
12:12
of all of it because yeah like it I mean it definitely
12:15
can be heavy especially when you're
12:17
in the space where you're
12:18
able to look further forward right and you're
12:21
you're trusting a little bit more in the future
12:23
even though it's it's been a future
12:25
that has you know been
12:27
like I don't know
12:29
maybe like pulling teeth sometimes to get here
12:31
yes yes uh huh
12:33
and and to speak on that I said that
12:36
you know for coming from the caregiver side
12:39
like I feel like this is just our normal
12:42
um we have been doing it so long that
12:45
we don't really see the difference
12:46
of like what somebody else that doesn't
12:49
have a cancer diagnosis is doing in their everyday
12:51
and I feel like sometimes friends of mine will be like
12:55
but this is a lot that you're dealing with and I'm like but it's what we do it's
12:59
every three months we have scans
13:00
and we wait for the results and then we
13:02
get the results and figure out what the next step is
13:05
um and so to us it became the norm and
13:09
it doesn't mean that it isn't
13:10
still crazy but like you said just kind of
13:13
we our brains do something to
13:15
to make it so that we keep going
13:18
yeah absolutely um
13:20
so I do wanna ask you guys over the past 10 years since
13:24
Phil's primary diagnosis
13:25
I mean you guys mentioned you've met
13:27
patients who are not ocular melanoma patients
13:29
but still kind of maybe in the young adult cancer
13:31
community or just the cancer community in general
13:34
um but specifically with ocular melanoma patients
13:36
I know that sometimes it can feel
13:38
really really vulnerable I can I can definitely
13:40
say that especially when I first had my first
13:43
like I was primary but I had my first friend
13:45
who went metastatic and I
13:48
I remember feeling a little bit of this tension
13:50
for myself of like how do I stay friends with somebody
13:53
who's metastatic
13:54
like can I can I do that can I handle that knowing
13:57
you know knowing
13:57
what the outcome is predicted to be at some point in the future
14:00
we don't really know what it would be um
14:02
because that just it felt really
14:04
risky I think as a as a patient to like
14:07
sit with that idea of of maintaining relationships so
14:11
over the last decade
14:12
that you have been an ocular melanoma patient
14:14
how have you been able to navigate those patient
14:16
relationships
14:18
I I mean
14:21
I no longer have a social media presence
14:23
like I you know I kind of deleted everything so
14:26
I don't necessarily see you know the the um
14:31
I don't necessarily see it up front every day
14:33
um I I did join the
14:36
A Cure In Sight there's the app
14:38
that I am trying to stay
14:40
current on there because you know I would like to
14:42
to talk to people to reach out to people cause I feel like
14:46
um you know I I do have a story of hope
14:50
but I also have that
14:56
that that not risk but the
14:59
you know the
15:01
guilt I guess it is so it is a little bit of the guilt
15:03
where just you know knowing that I'm
15:06
probably better off than a lot of other
15:08
people and it's just hard to kind of have those relationships
15:10
feeling like
15:12
I uh
15:14
sorry I don't have to finish
15:15
the answer to this question but it just um it is
15:18
it's hard yeah and I'm gonna say like just kind of
15:21
thinking just broadly about everything
15:24
one of the first things we did like I said was try to find this connection
15:27
so it was only
15:29
about four months after his primary diagnosis that
15:33
we figured out a way to get to
15:35
a conference for ocular melanoma and we were definitely
15:39
amongst the youngest people there yes um and
15:42
completely at a different part in our lives
15:44
than some with having young kids
15:46
and just still tried to build those connections
15:49
but because it didn't feel like a perfect fit
15:52
only about a few months after that we went to
15:55
Cancer Con
15:56
which is specifically for young adults with cancer
15:59
and I feel like while there Phil had guilt that
16:02
the treatment
16:03
of the primary cancer this was prior to the metastatic
16:06
yeah um
16:07
that was kind of seemed like well that's so easy
16:11
what you just dealt with like you had to put a plaque
16:13
in your eye and sit
16:14
in a room for a week what do you mean like
16:17
where other people went through
16:18
a lot more intense treatments
16:21
and then you know he even sometimes minimizes
16:24
the metastatic treatments
16:25
because it might not have been something on like an everyday basis
16:28
that he was doing um and then
16:31
like I said we we had friends who were diagnosed
16:34
that we went to high school with that had
16:36
much harder battles or quicker battles and you know
16:39
I feel like it is that risk but they were cheerleaders
16:43
for us and and we try to be cheerleaders for everybody
16:46
that is going through some
16:49
version of this and I think that that time of
16:52
it being 10 years
16:53
is really what allows that for us and and especially
16:56
like I know I'm the caregiver but for me
16:59
I can kind of separate that and be like and be able to
17:04
give information
17:05
that we didn't have when we were in that throw and say
17:09
it's have Grace it's going to be easier
17:13
once you've been walking it for a little bit
17:16
I mean I know kind of I feel like we
17:17
we veered a little bit from the question of like
17:20
that but it still kind of relates because
17:22
we stay connected
17:23
at least I try to be that connection for both of us
17:26
and I feel like I see that the way that we
17:30
can stay connected
17:31
is to be that for other people like what we
17:34
look for what we needed and being able to say that
17:38
it gets easier when you're moving
17:40
through it because you'll have that information
17:43
that's so unknown right now
17:45
no I think that's a really good way of putting it and
17:47
um
17:48
and I do want to just put the plug out there for those of you guys listening
17:51
there
17:51
again I mean you guys I hope you hear me say this a lot there are no rules
17:55
right there's no rule book that we all start this diagnosis with
17:58
we're all kind of writing it as we go and
18:00
I think that you know you mentioned
18:02
Caitlyn like giving ourselves Grace giving yourself
18:04
Grace it's so
18:05
important that we give ourselves
18:06
Grace at different points because I do think that
18:09
um that it can be far more triggering and just
18:12
risk feeling to associate with other patients
18:15
on a like on a super regular basis um
18:18
when you're in a really
18:19
really vulnerable place yourself and
18:21
as I think that you know when you're newly metastatic
18:24
I'm not gonna say like don't hang out don't like go see friends
18:27
don't come to our conferences
18:28
but also like give yourself Grace
18:29
if that just doesn't feel like the right time today
18:31
and and if you um
18:33
like I know I have some friends who we
18:35
we had somebody who passed away in the community
18:37
um who's been on the podcast a lot Linds Brown and
18:40
uh there's a lady who had been talking
18:42
about wanting to go and meet her and she was devastated
18:45
that she didn't get the chance to go and meet her
18:47
um and you know we have to give ourselves Grace for
18:50
for those kinds of times right when we have a desire
18:53
and we just maybe
18:54
don't have the bandwidth that we don't have the life
18:56
you know the life space to go and
18:59
um and engage with patients who are states away from us
19:01
like we really have such a rare diagnosis
19:04
and we have to give ourselves Grace
19:05
for the best ways that we can connect and to just
19:08
to just um I think just be okay with the ways that
19:11
that looks and how different it can be
19:16
um and Phil I wanted to ask you what's your experience
19:19
been like on the app
19:20
sorry I'm like deviating a tiny bit because
19:22
not many people know about our app so thank you for bringing that up
19:25
yeah I mean I haven't interacted
19:28
too much on there but it is an app that I you know do try to check
19:31
more regularly and you know I just kind of put a
19:34
a message out there just kind of you know saying hey
19:37
you know this is who I am this is my quick
19:39
story you know I'm glad to be her cause it is it is
19:42
it is very nice to have the connections
19:44
uh me I'm more of a person that likes to have like
19:48
face to face connections
19:49
than you know it is it is on an app but you know again
19:52
because of the demographic of being such a rare cancer
19:55
you know it's it's not easy
19:58
but no the app is great because it is just you know
20:01
there's
20:02
it's just it's very focused on you know
20:06
our people us
20:08
well and you mentioned not really being on social media and I
20:11
I love that you brought up the app because
20:13
really that that's kind of what I mean not
20:15
not even kind of that is part of what it's there for it's to
20:18
take away the distractions
20:19
and kind of being inundated with everything
20:21
on social media
20:22
but also giving you a chance to just really focus in
20:25
on the ocular melanoma community on
20:28
you know learning about ocular
20:29
melanoma like whatever it is that you need in there so
20:31
for those of you guys who don't know what we're talking about we'll link
20:34
the information on how you can access the app
20:36
um down in the show notes in the description um
20:39
but Phil thanks for bringing
20:40
that up I'm glad it's been a good experience
20:41
for you so far
20:44
okay so um
20:46
with you guys being a young family
20:47
you mentioned like going to cancer con
20:49
and like just some of the experiences
20:50
you've had in ocular melanoma
20:52
oh my goodness can't talk
20:53
the ocular melanoma community um and just how isolating
20:57
I think it can be to be kind of in the younger space um
21:01
and I think because you know we tend to find as younger
21:04
people we tend to find the younger people right like even just in an online
21:07
space um
21:08
it can feel like there's more of us than there really are
21:10
but when you get in a room
21:11
full of you know 100 patients
21:13
there's maybe 10 of us or less
21:15
you know if there's even that many
21:17
who are on the younger side of the spectrum um
21:20
how do you guys as a young family
21:21
feel like you maintain a sense of normalcy
21:24
like just throughout having the scans the treatments
21:27
with your four kids
21:30
yes well
21:31
you said it there I mean that that
21:33
it's we we kind of have no choice with the four kids
21:36
uh you know it's just our we're so
21:40
busy busy all the time that you know we
21:44
it's kind of hard to not hard but I don't
21:49
give myself a lot of time to really
21:52
think about it all or
21:53
or just just because the you know we we just you know
21:56
yesterday we had three doctors appointments like
21:59
for you know the kids the kids and spring break so
22:01
yeah gotta get that in there um
22:04
but yeah it just we just kind of stay really busy and
22:08
uh you know we we look at our scans
22:12
and it's kind of like you know and
22:13
and because I've been
22:14
you know it's been a long time since I've had the um
22:18
Immunoembolizations and those those were rough and
22:23
you know recently
22:24
it's just been the Nivo which also you know it's got
22:26
it's it's
22:27
hard things about it
22:29
but that's kind of much more regular
22:32
uh you know I am doing it every month ongoing
22:35
and you know I we did just get
22:36
results back that were you know that were good I I
22:39
received a partial response and uh you know things look
22:45
good I mean I don't even know if that's so their their
22:48
target lesions are shrinking yes which is obviously
22:51
an amazing
22:52
news for this treatment the combo of the Ipi Nivo
22:56
that he his body is
22:58
shrinking these tumors that they were
23:00
looking at and targeting for this treatment
23:03
and you know being a
23:04
a patient of Jefferson I'm sure most hospitals
23:06
have it now with the my chart just
23:08
you know we get the results
23:10
right on my phone I'll get an alert
23:11
saying oh you have new test results I quick read it
23:14
you know I send it over you know to to Cait
23:17
if you know she hasn't seen it yet and we're just okay
23:19
things look good and then we just kind of move on and
23:22
you know and we're very fortunate to be able to be in that position
23:25
where um you know that's kind of how
23:28
I don't want to say easy cause it is always a little
23:30
scary
23:31
first opening up that app just being like what's it gonna say
23:35
um
23:36
so that's kind of like you know yeah it's just kind of like okay
23:38
we got the results here they are cool
23:40
and you know even if something
23:41
does kind of show up I know that I'm gonna get a call
23:43
from you know a doctor Sato's team and you know
23:46
we're gonna figure it out so
23:49
yeah you get in the groove of
23:51
OK yes we're doing this and also
23:54
we have the predictability of knowing like the team
23:56
you know the medical team that you've established
23:58
care with is on top of it um and
24:00
and I feel like this actually gives a
24:01
a really good segue
24:02
into the next question that I wanted to talk a little bit more with Caitlyn
24:05
about but but this
24:06
idea of kind of the urgency and crisis feeling
24:09
that you have at the beginning of the diagnosis
24:11
it kind of gives way to something that feels
24:14
different I think and it's
24:15
it's a little hard to like put that into words um
24:18
but Caitlyn like how have you noticed that shift
24:20
away from like OK yes this feels really urgent to
24:23
you know what Phil is describing where it's like OK
24:25
like we trust the process a little bit more
24:28
right and I think I kind of
24:29
touched a little bit on this with saying
24:31
that like the only
24:33
way that this gets easier is by going through it and
24:35
having that experience that lived experience to know
24:38
and like you said the predictability
24:40
of knowing okay every three months it's this and
24:44
all of that it became
24:45
normal to us we don't really know anything
24:47
besides this because we've been doing this for
24:50
10 years now like every three months we have scans and
24:53
um I unfortunately have a coworker
24:56
who is just starting this battle
24:58
her husband who is also
25:00
the same age as us just got a a diagnosis
25:03
of an unknown origin right now but
25:06
she even sent me scans to say OK these posted
25:09
into our chart what does it mean I have become a layman
25:13
you know radiologist I guess reading through these CT
25:16
scans and MRIs
25:17
and I'm not a scientist I'm a teacher so I definitely
25:21
don't put all of my faith in how I've looked at it and
25:25
and decide what it might be but
25:28
we have developed a system for understanding
25:31
certain terms that are in the scans to know
25:34
are you gonna need a different treatment or are we
25:36
status quo right now and um I I will say that
25:41
I don't necessarily
25:42
feel like a sense of urgency isn't there
25:44
I like to use the term like anticipatory grief
25:48
um because that doesn't ever go
25:50
away and I feel like that's something that
25:53
people who aren't walking this don't quite understand
25:56
that and then you sent that article
25:58
we we read through the long middle
26:00
definitely resonated deeply with both of us
26:03
and I feel like it gave such a a name a term
26:06
to it because it's
26:08
something that people are like but
26:09
but all's good move on but in my head like it isn't
26:12
like even though this is my norm
26:15
this is my norm until that norm has to change again
26:18
so I wouldn't
26:19
say that like a sense of crisis or urgency
26:21
like it isn't that crisis right now but
26:25
it's always there
26:27
it's there in my head so I I feel like
26:29
for me it it is there I and I
26:32
almost say like I probably
26:33
sit at a little bit of that like flight or
26:36
fight at all times
26:37
but maybe I didn't or wouldn't have if we weren't
26:40
like dealing with ocular melanoma
26:44
yeah absolutely
26:45
Phil did you have anything else you wanted to add
27:06
yeah no no I'm just trying to think I'm
27:08
gonna say like you made a comment about like meeting
27:11
new people
27:12
and that people who've been in your life and know your history
27:15
it's a lot easier
27:17
and even though it might not feel quite as heavy at all times
27:20
meeting new people and sharing it there's it's it's
27:24
you were explaining
27:24
that I'll let you kind of yeah that's very hard
27:27
um we had a um
27:30
we have a situation where there's like you know a a
27:33
my son has a new friend that you know
27:36
moved into the neighborhood and you know
27:37
this was at the times
27:38
I was kind of in the throes of the Ipi Nivo
27:40
and I was in the hospital you know I'd
27:42
hospitalized a couple times because of complications
27:44
and
27:44
what not so I just kind of wanted to let that family
27:46
know like kind of what I was going through
27:49
and it was very much it was the you know like the
27:53
the shock of oh you have cancer but then it was like the well are you cured
27:56
are you
27:56
you know like well what are you where are you at and
27:58
it's such a hard thing to explain that you know that
28:02
that article of the long middle
28:03
it just kind of perfectly in you know
28:06
that's perfect it defines exactly where we're at and it
28:10
just kind of like realize that it's like you know I just I kind of
28:13
can't share
28:14
as much as I want to because
28:16
again the people not understanding and I feel like it's just I
28:19
maybe scare people with what I say but
28:22
you know at the same time it's like you know I
28:23
I I need to kind of express myself
28:25
and I don't mean to come off that way I just that
28:28
this is just my life this is you know
28:29
who I am this is how I've
28:31
this is how I need to cope and um yeah
28:37
I think that's beautiful
28:38
and for those of you guys wondering
28:39
like this article what are they keep referencing
28:41
we'll link that in the show notes as well uh
28:43
it's absolutely like I mean if you guys anybody
28:45
know like just putting it out there to the internet
28:47
birds anybody know this woman
28:49
because I would love to talk with her on the podcast
28:52
as well she would be an incredible guest to have um
28:55
but we'll make sure to link that article as well
28:57
and I can totally relate
28:58
though to what you said Phil because I have
29:00
kids and you know we we started at a new school like
29:03
last year
29:04
um we moved the kids to a different school and
29:06
now they're all at the same school and I've been volunteering
29:09
in class but like
29:11
there's just some level of okay I introduce
29:13
the situation to the teachers
29:15
I tell them what's going on
29:16
but then every time my kids have a new friend it's like okay
29:18
how much do I tell them
29:20
do I tell them do I not tell them like
29:22
and and I find myself
29:24
sometimes kind of experimenting I think with the
29:26
idea of like okay so how much can I go through this relationship
29:28
without telling them anything
29:30
like how much before it just like really comes up
29:33
usually it's because my kids will be like hey so my mom has a fake eye and I'm like
29:37
thanks guys you just outed me like but thank you
29:40
like here I was just existing
29:42
talking about books and happy
29:43
you know happily living my life with this other mom
29:45
and um because it it does kind of feel like it it can
29:49
taint the situation a little bit in a in the
29:52
they look at you and go oh my gosh like
29:54
are you okay how can I help
29:56
versus also the but wait you look fine and
29:59
and it is such a complex
30:00
thing to explain that it's like okay
30:02
we can't really like sit down and explain
30:03
this in one sitting where I'm at why I'm here
30:07
like all the the nuances of that
30:09
there's just there's a lot to define there
30:12
and I think that kind of concept of like okay like
30:15
like yes
30:16
I have a stage four diagnosis and I'm living with it
30:19
living within it
30:20
living in the middle of it I don't know like that
30:23
that's really
30:24
I think that that article just really puts it so well
30:28
for sure
30:29
yeah yes
30:31
so with the kind of idea Caitlyn
30:34
that you are a little more prevalent on social media
30:37
a little more present in kind of the world of
30:39
of seeing when somebody posts you know
30:41
what's going on if if you happen to be connected
30:43
with those people um how do you navigate
30:46
the emotional complexity that you hold space for
30:49
like of you know just
30:51
seeing people and meeting people and then
30:53
having them pass away um because I think that
30:56
there there's definitely
30:57
something to be said of being a caregiver in this space
31:00
yes and I
31:01
I said I think being a caregiver gives me that
31:04
like a little bit of like the the bird's
31:06
eye view as well um and kind of knowing
31:10
again like I said originally my path was looking
31:13
for a story like Phil's to cling to to say
31:17
we don't only have to go with what the statistics say
31:20
um they're just that they're statistics
31:23
and we can very easily find many
31:26
stories that don't follow the same path as Phil so
31:29
while like I
31:31
see these things and they
31:32
they do affect me and like I I will share with Phil
31:35
some of them um I also can hold the space
31:39
that I know like when I've made some of those connections
31:42
just sharing Phil's story might have helped them
31:45
moving forward and
31:46
and pushing on and saying it's worth trying
31:48
this treatment it's worth um
31:51
you know keeping going um there is
31:54
a chance that I will have a response like Phil
31:57
um I say it because
31:59
I feel like some people are like well they you know is
32:01
is it worth it I do I'll say I think it's worth it find
32:04
the specialist
32:05
like you know we are fortunate to live right here
32:08
just outside of Philadelphia so Doctor
32:10
Sato's team at Jefferson is very easy for us to get to
32:14
but I also know that you know
32:16
having been patients there now for about 10 years
32:19
that they truly are you know top notch in
32:23
in keeping up with the research
32:24
keeping up with the clinical trials making sure that
32:27
you know patient
32:28
first that they're trying to make sure they find you what works
32:30
um if the treatment can be done closer to home
32:33
they are willing to work with those teams
32:36
um it's not somebody that's like only
32:39
going to work if you come out here to Philadelphia I mean of course certain
32:42
treatments are only here but
32:44
you know I feel like even for us
32:46
Phil is getting his Ipi Nivo at the Bucks County
32:49
Jefferson location
32:50
versus driving into Center City each time
32:53
um and so you know they helped coordinate that
32:55
so I feel like I while you know I
32:59
I feel like just as an empathetic person as a
33:02
as a Pisces that I feel very much for a lot of others
33:06
that like I take on other people's feelings and
33:09
want to help everybody um I find like where I
33:14
put my heart is helping by sharing Phil's story
33:17
because I feel like it shares that that link to
33:21
you know there is there is hope there is a a
33:25
there are people out here who are doing great
33:28
and still navigating those treatments and and still
33:32
making you know like we said having
33:35
all of these life experiences
33:37
after being diagnosed stage four
33:39
having these wins so
33:42
there's something to be said of your guys' situation being
33:45
particularly unique because I feel like there's lots of maybe not lots
33:48
but there's a fair few of those kind of just random
33:51
stories
33:51
of people who had treatment for metastatic disease
33:53
10 years ago and then they haven't had anything
33:56
done since and they're just okay
33:58
they're fine like they're just living their life
34:00
they're as close to NED
34:02
as they possibly can be or they have lesions
34:04
that have just been stable for 10 years like there's
34:07
there's just a handful of people that are in that situation
34:09
it doesn't happen very often
34:11
but it's definitely more rare to find um
34:13
but then I feel like it's also a little more rare
34:16
to find someone who's actively still having treatment
34:19
and like is you know largely just living
34:22
their life as best as they can with
34:25
you know the normalcy
34:26
that comes with having regular treatment
34:28
um it's it's kind of just an interesting
34:30
like difference between those spaces for sure
34:33
yes
34:34
his liver
34:34
has been stable which has been you know obviously
34:37
amazing
34:38
so we kind of are are balancing between both because
34:40
when he got that like his liver has been stable for
34:45
seven years um
34:46
nothing's been growing there nothing new
34:48
but it's the outside of the liver
34:50
popping up so that that active treatment now
34:53
is because of that and so I feel like it it definitely
34:56
we've kind of lived both pieces of that yeah for sure I definitely
35:00
appreciate your guys' perspective and I think it's been
35:03
it's been really fun to be able to chat with you guys and I really appreciate you being willing to talk both together
35:07
about Phil's story and um
35:10
I wanted to ask you guys this question as we wrap
35:13
where do you guys feel like you draw your strength
35:14
from the most as a couple as a family
35:18
whether it's spiritual practices community
35:20
like you know kind of where do you feel like you guys
35:22
feel the most empowered
35:24
while you're dealing with all of this
35:26
yeah I mean I I definitely
35:27
feel like it's my family that kind of just keeps
35:30
keeps me going uh you know just kind of you know
35:33
doing what I can for them you know just kind of
35:36
you know I
35:37
just I love it and then you know other things too like you know I
35:39
I really enjoy nature uh
35:41
so you know as far as just going for a walk or getting
35:43
fresh air or any of that stuff that really
35:45
helps me a lot just kind of you know be by myself
35:49
be in the nature you know just just being able to enjoy
35:53
you know what we have like you know
35:55
being able to enjoy you know yeah so um
35:59
yeah family and you know
36:01
and I'm gonna say maybe the uniqueness
36:03
of being diagnosed at this age like you said
36:05
ten years ago we had a
36:07
a three year old and a one year old um
36:10
we had really no choice
36:11
but to make sure that things kept as you know
36:15
normal as possible for them and obviously
36:18
while walking this path
36:19
we've added to our family and we had two
36:22
more children so with the four kids now being busy
36:25
I mean sometimes we wonder like they
36:28
they can live where yes they know that their dad is
36:31
has cancer he's battling cancer but
36:33
it sometimes doesn't feel like it's the first thought
36:36
in their head so I feel like I draw strength with
36:38
making sure that my kids know that we've
36:41
we've done everything we can to make sure that they
36:44
have what they need and that they're happy so
36:46
family definitely is a huge one um
36:49
for for me as well that we just keep moving forward and
36:53
we this is what
36:54
our life is so we're going to make the most of it yes
36:57
yeah I love it oh man you guys
37:00
it's still I mean I I know
37:02
I know that you know we could talk
37:03
a lot more about lots of different
37:05
lots of different kind of Segways
37:06
pathways we could follow down this idea um but
37:09
thank you guys for being here while you're in the middle of
37:12
living your kind of version of the long middle
37:14
um I wanted to just ask if you could give
37:17
one piece of advice to someone who maybe they're
37:20
new to this space of like okay they're settling into
37:23
you know a year and a half two years out from metastatic
37:26
treatment they're doing
37:26
better than they thought they were gonna be doing
37:28
statistically obviously they beat most of
37:31
these statistics um what would you say to them
37:34
um and I'll I guess I would ask
37:35
if both of you wanna share something
37:36
or one of you either one
37:39
um
37:40
sorry give me a second to think on that one so
37:43
what they
37:47
um I mean like I
37:48
I feel like I've kind of touched on it a lot and just saying that
37:51
by the the more we we do it the the easier it gets
37:55
the the more that we can kind of
37:59
compartmentalize and and separate
38:01
what needs to be done with what we still get to do
38:04
so kind of understand that
38:07
just because you have that stage
38:08
4 diagnosis does not mean you won't have you know
38:12
other things in your life that you always dreamed you would have cause
38:16
we were we're proof that
38:17
even though we got that diagnosis so
38:20
we've we've accomplished a lot
38:22
since then that we wanted
38:24
that we at maybe in the beginning that beginning
38:26
first year or two of the metastatic disease
38:28
we didn't think was going to be in our future
39:03
okay so Phil um
39:05
when did you feel like you kind of hit this new normal
39:07
that Caitlyn has referenced
39:09
throughout our episode when did you notice that
39:11
yeah I mean it it's definitely a
39:13
I would say like if you want to look like a kind of a specific point it was kind of when
39:18
I no longer needed the Immunoembolization
39:20
but even after that I was still kind of concerned
39:23
you know where it's gonna pop up next I don't know if at this time it had
39:26
reached my lungs yet uh when I you know was
39:29
in the throes of you know my liver treatments
39:32
uh but you know it it it of course wasn't
39:34
overnight and it kind of you know it's kind of with every
39:37
scan
39:37
after that it just kind of I was able to breathe a little bit more because
39:42
you know my
39:42
results were kind of coming back you know unremarkable
39:45
um so
39:48
it it it it
39:49
it took time so maybe you know maybe like you know for me it might have been like two years
39:54
before I started to kind of feeling like okay
39:56
this is the normal this is where I you know
39:58
again was like you know kind of how I explained
40:00
earlier that you know now when we look at scans and
40:02
you know I do get scanxiety but it's not at the
40:08
the way that I would when I was newly
40:09
diagnosed and newly metastatic um
40:13
you know I it's always that little bit of you know worry
40:15
but you know it's
40:16
um but yeah so it it just it it kind of
40:19
happened naturally um
40:22
and um
40:25
yeah I um
40:27
yeah that you were saying like
40:28
yeah that like it happens
40:30
over time that it's not gonna be an overnight
40:32
feeling so just being there and and continuing
40:36
through it it all of a sudden it's gonna feel
40:39
like the norm or yes
40:43
you know for those of you guys listening
40:44
I know if you're newer in the metastatic space you're
40:47
you know still getting scans and it still feels
40:49
maybe doesn't feel like you've settled
40:51
into like the okay maybe I'm not as anxious
40:53
about my scans as I was three years ago time
40:55
you know five years ago
40:57
you don't have to be there today it's okay but
41:00
use Phil as proof that you can be there
41:02
if you so choose um
41:05
and you know like I mean even me like I'm
41:07
six years in almost and I still
41:10
have you know some level of heightened scanxiety but
41:13
I definitely don't feel the same full body
41:15
reaction that I used to feel at least not as often um
41:20
and I don't know
41:20
maybe that will come and go right like and
41:22
and like Caitlyn I think you said this earlier
41:25
sometimes you're gonna have to make adjustments
41:27
and but but the nice thing is to just trust that
41:30
the process is there to make adjustments with right
41:33
um that you're not just
41:35
you're not just swimming in the ocean
41:36
alone like there's definitely life rafts and boats
41:39
and lifeguards and I don't know what
41:40
the Coast Guard is out here to try to rescue you like
41:43
there's there's lots of people around who are rallying
41:46
you know in your corner whether it's your community
41:48
your family um your doctors obviously
41:51
and then of course you guys have each other which I
41:52
I think you guys have such a beautiful relationship
41:55
thank you
41:57
well you guys thank you so much for tuning in and for listening
42:00
those of you guys listening please drop some comments
42:02
share your takeaways in the description book you know
42:05
wherever it is on YouTube in our comment boxes
42:08
and we're just grateful for you guys being here hopefully you've subscribed
42:11
and if you haven't
42:12
please make sure to subscribe to the YouTube channel
42:14
you're listening on the podcast
42:15
definitely subscribe to wherever you're listening
42:18
Spotify the Apple Podcast app
42:20
um and please make sure to share this episode
42:22
like Caitlyn
42:22
said like one of the best things that we can do for each other
42:24
is share those stories of hope right
42:26
because when we're on social media
42:28
when we're in those Facebook groups
42:29
sometimes you can definitely
42:30
feel like you're being inundated with kind of the hard news
42:33
and the challenging stuff um it's
42:35
important that we look for the good
42:36
that we look for the examples or the the reasons
42:39
why yeah there's actually people who are doing great and there's people who are doing
42:42
way better than statistically should be possible
42:44
so let's just keep looking for that proof together
42:47
um and I hope you guys can share Phil's story
42:49
as a way to look for that proof
42:51
so thank you guys again for both being here for being a guest
42:54
on the Eye Believe Podcast
42:55
for being a part of the A Cure In Sight community um
42:57
if anyone is listening and they want to
42:58
get in touch with you guys specifically
43:00
with Caitlyn and Phil
43:01
how would be the best way for them to get in touch with you
43:04
yes so I you know as I as I mentioned
43:06
earlier I am on the A Cure In Sight app um
43:09
and you know I can definitely you know provide
43:11
you know my uh handle or code uh
43:14
you know as far as you know to how to get in touch with me please you know reach out if you have any questions
43:17
or want to talk uh you know
43:19
reach out to me there I mean I think that's a good spot
43:22
and of course I'm on Facebook and I
43:24
stay active in the groups um
43:26
even if I'm not always posting I'm always lurking
43:28
so if you
43:29
make a look for me if you can't find me you can
43:32
put a comment and I will probably see it and can answer
43:36
wonderful well thank you guys both so much
43:38
and a huge thanks to our sponsors
43:40
we could not do this without them so thanks again to um
43:43
our sponsors
43:44
without their generous contributions to the the podcast
43:48
platform the YouTube platform we would not be able to
43:50
continue just making the content and bringing you guys
43:52
stories like Phil's and also the educational
43:55
content that we bring you from doctors researchers
43:57
so you know big thanks to our sponsors if you haven't
44:00
met them or you haven't
44:00
had a chance to meet them at some of the different events
44:02
that we have um definitely take the time
44:04
coming up at our I believe that we have in the fall um
44:07
meet them come and
44:08
you know come and see some of the reps
44:09
that we have from the sponsors
44:11
they come to those events
44:11
every single year and the people that we've gotten to meet from all of them
44:15
uh are fantastic
44:16
people like they genuinely
44:17
care about the ocular melanoma community so
44:19
we're so thankful for you guys and we couldn't do it without you
44:22
with that we will see you guys next time on our next episode
44:25
and we will talk to you later