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Outliving the Statistics: A Story About Survivor’s Gratitude | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey omies
0:04
thank you so much for joining us today here
0:06
whether you're coming in on YouTube or you're listening
0:08
um on our podcast channels
0:11
we are so glad you're back here
0:12
and we cannot do this without our listeners
0:14
um but we also can't do it without our guests
0:16
so Katie Doble is famous
0:18
I think in the ocular melanoma world and um
0:21
with good reason with good reason
0:23
but um
0:24
she's from Colorado and if you don't know who she is um
0:26
she is one of the I think the first
0:30
like TIL therapy responder
0:32
like super responder basically
0:33
I mean we'll get into that
0:34
but um
0:35
but for the most part like
0:37
okay Katie
0:38
we're both Swifties um
0:39
what do you feel like is a
0:40
a song let's just pick one
0:42
I know there's probably many
0:43
but one song you could pick that would define like
0:45
your journey like today
0:48
a Taylor Swift song yes
0:51
a Taylor Swift song oh gosh
0:53
I don't know
0:55
I don't I do not know
0:57
um I mean
0:58
I have favorites of hers um
1:01
I will say anti hero because I
1:06
my motivation in my fight has been my nieces
1:08
and my nephews
1:09
um my nephew and niece got tickets
1:15
when she came to Denver a couple years ago
1:17
and we were only able to get one ticket
1:21
for a chaperone for them and um
1:24
I my sisters wanted to go
1:26
but I'm a bigger fan and um
1:28
I'm the favorite and fun aunt and so I got to take them
1:31
which was amazing
1:33
and they made me a bracelet that said Auntie Hero
1:37
and so that song has always been um
1:40
kind of a favorite of mine for that reason
1:44
I love it okay
1:45
well that's the best
1:47
I got to go to the eras tour as well
1:48
it was like
1:49
we were in Phoenix
1:50
we were the first stop for the eras tour
1:52
when she first launched
1:53
and so we got to go opening night
1:55
like very first time that it ever went
1:57
and it was it was incredible
1:59
I don't think I've ever been to a Taylor Swift concert
2:01
before that despite like
2:02
basically growing up on her music and huh
2:05
it was absolutely transcendent
2:08
yes it was magical yes
2:10
well when I think about your journey
2:12
I'm not gonna lie like
2:13
maybe an easy song for me to
2:15
to kind of put in there
2:16
and into what I know about your story is long live
2:19
um I just like
2:20
oh my god yeah
2:21
and when that came on I was like
2:23
totally crying at the concert
2:24
yeah absolutely like oh
2:27
and that one that's the song that I sing like
2:29
every time I do cryotherapy like
2:30
which is basically
2:31
standing in a freezer for five minutes
2:34
for health for fun
2:35
yeah um
2:36
but I listen to I listen to long live
2:38
and I sometimes sing it and anyway
2:40
it's such a good song though
2:42
um okay
2:42
so Taylor Swift obviously
2:44
we love Taylor Swift um
2:47
but Katie you are a ocular melanoma survivor
2:50
and um
2:51
that's not really very common
2:53
like
2:53
I think that we talk about ourselves as being survivors
2:56
you know in the sense of like hey
2:57
like I'm still here
2:57
I'm disease free like and
2:59
and I think we think of
3:00
especially in the metastatic world
3:01
we think of survivors as like
3:03
oh like
3:03
those are just the people who never metastasized
3:06
like because in the OM world
3:08
it's just feels it feels so rare sometimes
3:12
to even know that there's anybody
3:14
who's ended up with metastatic disease
3:16
and who has has
3:17
you know
3:18
I don't want to say succeeded
3:20
but who has come out on top right
3:21
like who has
3:22
has beat the statistics
3:24
and just kind of combated the odds
3:26
despite everything that was stacked against them
3:28
so let's talk a little about this idea
3:30
of you being a survivor versus um
3:33
what do you what do you identify more as
3:35
yeah so um
3:37
I'll just back up a little bit
3:38
and give you a high level
3:39
sort of how I got to where I am
3:41
I was diagnosed primary in um
3:45
in may of 2,013 I was 31 years old
3:48
um I had the Castle Biosciences testing done
3:53
and I was a 1A
3:54
I don't even know if they still do that anymore
3:56
but I was told at the time
3:57
there was a less than 2% chance that it would spread
4:00
so I was like Yay
4:01
that's great like
4:02
I lost vision in my eye they were able to keep my eye
4:05
but that was sort of that was it
4:07
and I thought I was done being a cancer survivor
4:11
um a year and a half later
4:13
thankfully my doctor had recommended I do
4:15
routine liver ultrasounds
4:17
and so a year and a half later I um
4:20
got a phone call after my morning ultrasound
4:23
there were 12+ suspicious lesions
4:26
a biopsy uh
4:27
shortly after confirmed that it had metastasized
4:30
uh that doctor told me that I had 16 months to live
4:33
if I was lucky
4:35
and she told me I had one treatment option
4:38
she recommended I get on Yervoy and um
4:40
that was it my dad is a doctor
4:44
he is a retired internist and um
4:47
my mom died of pancreatic cancer
4:48
when I was 15 years old
4:51
so he was no stranger to the world of medicine
4:54
he always says I'm not a specialist
4:56
and I'm like dad
4:56
you know way more about this than most people do
4:59
and having him guide me it saved my life
5:02
so in a nutshell
5:03
I went on to do four clinical trials
5:06
all over the country
5:07
and my fourth clinical trial that I did
5:09
was called TIL therapy uh
5:11
tumor infiltrating lymphocytes
5:13
uh I had that in um
5:16
September of 2020 I saw a good response from that
5:19
a year later there was one
5:21
one festering tumor is what my
5:23
my doctor kept calling it
5:25
so I naturally named the tumor Uncle Fester
5:27
so in September of 2021
5:29
I had this major operation where they cut a 13 inch um
5:32
incision in my abdomen
5:34
they took out half of my liver and all remaining cancer
5:37
and when I woke up from that surgery
5:38
Doctor Kammula said you're no evidence of disease
5:41
um in that seven and a half year journey where I was um
5:46
in the thick of the fight
5:48
I called myself a thriver
5:50
I didn't feel like a survivor yet
5:52
because to me the word survivor meant you're done
5:56
um and so for me
5:57
thriver meant you're still in it
5:59
and you're thriving and you're doing well
6:02
and so that was a word that was really
6:03
really important to me in
6:05
in the journey process or in the
6:06
you know in the clinical trial process
6:09
and I quite honestly never even anticipated
6:14
you know of course
6:15
we all hope that one day I'd be able to say
6:18
this cancer is no longer in my body
6:20
but really it was just
6:21
you're just in it like
6:23
you're just taking it day by day
6:24
and so it wasn't something I had really dwelled on
6:27
and so when that day happened
6:28
September 17th of 2021 and I woke up from that surgery
6:33
I it was
6:34
it was amazing it was
6:36
you know it was a dream come true
6:38
um but one of the
6:39
one of the things that I noticed right away was
6:42
everybody was like you're done and
6:44
and you referenced that article
6:46
that the woman recently published about um
6:48
survival and kind of the in between and um
6:51
and for me when
6:53
when I became no evidence of the disease
6:54
the amount of people that were like cool
6:56
so you're good now and I'm like
6:57
god no
6:58
I'm just beginning like
7:00
it's surviving cancer living with cancer
7:03
surviving with cancer it's trauma
7:05
and so um
7:07
those first few days afterwards
7:08
where everybody was like
7:09
wanting to throw me a party
7:10
and I'm like
7:11
I can't even go to the bathroom unassisted right now
7:13
like I'm still in a world of hurt
7:16
is I have a massive road to recovery ahead of me
7:19
um you know
7:21
one person was like
7:21
I thought it was like a laparoscopic surgery
7:23
like I thought
7:23
you're good and bounce back
7:24
I'm like no
7:25
no no no
7:25
like they took out half of a major organ
7:29
and and so my body had to recalibrate from that and
7:33
and then there was the mind
7:34
and just what my mind had to go through to process um
7:37
and as I've mentioned to you earlier
7:39
um there was no one for me to call
7:41
like I don't
7:42
I don't know I didn't know of anyone else in our very
7:47
very small community
7:49
who had gotten to the point I had gotten to
7:53
and so that was isolating
7:55
and I also felt like I couldn't complain to my Omies
7:58
who were still in the fight
7:59
because they're like I'm not gonna feel sorry for you
8:01
like ha ha
8:02
I want you know
8:03
I wanna I wanna have what you have
8:05
and so that has been challenging as well
8:09
um and I remember the day I got diagnosed um
8:12
I think as a primary and I asked that doctor
8:15
who I'm still very very close with um
8:18
I asked him a question about other patients
8:20
and he said you know
8:21
you're all kind of your own lonely
8:22
little birds in this process
8:24
and I will never forget hearing that
8:27
and it is remained even as
8:30
you know even when it metastasized
8:33
even when I became a survivor
8:35
it's still a lonely place to be um
8:39
because it is such a rare cancer
8:42
and none of us are behaving the same way
8:44
all of us have a different experience
8:46
what's worked for you isn't working for somebody else
8:49
in vice versa so it's really hard to um
8:54
to you know
8:55
it it's
8:55
it's easy to feel isolated
8:56
it's easy to feel alone
8:58
it's easy to feel like nobody understands me
9:01
but I think we've built a great community
9:03
I I actually had a dream last night
9:04
about you and me and Ashley hanging out
9:06
and I was like I gotta do this more often
9:08
we've built a great community
9:09
we've you know
9:10
we've
9:10
we've learned kind of where and how to find each other
9:12
but then that also makes it hard
9:14
because the hits come frequently
9:16
as you know
9:18
yeah the hits absolutely come frequently
9:20
um and
9:21
you know those
9:22
those relationships with other patients
9:23
like you said like
9:24
when we're so isolated especially
9:26
like literally isolated
9:27
because in maybe our region
9:29
there's not any patients around us
9:31
or there's very few um
9:33
but then also just isolating
9:35
because of the uniqueness of the story right
9:37
the uniqueness of the path and
9:38
and the way that we walk this journey
9:40
and that in and of itself
9:43
I think you know
9:43
you mentioned trauma like
9:45
the trauma that we experience
9:47
everybody experiences that differently
9:48
the lens that we view life and like
9:51
kind of how we make sense of everything
9:53
like how we make meaning
9:54
how we process like
9:56
all of those things are so unique to each of us
9:58
as individuals um
9:59
and I want to just kind of
10:00
point out something that you talked about earlier
10:02
you said that
10:03
that you really felt like it was important
10:06
to distinguish between being just a like
10:08
you know between being a survivor
10:10
meaning you know
10:11
that you had made it through
10:12
versus being a thriver meaning you're in it
10:14
but you're thriving and I think that
10:15
one of the things that I took away
10:16
from you saying that is that you kind of found um
10:21
found a way to give meaning to a word
10:24
and give meaning to like
10:25
kind of the way that you lived your life
10:26
and the language that you used
10:27
was really important to you
10:29
and so I always kind of I find it frustrating sometimes
10:32
when I hear of patients who their doctor like
10:34
leads with oh
10:35
you're gonna be alone in this
10:36
you're gonna be super lonely
10:37
like you're gonna be
10:38
because
10:38
I do think that that shapes our experience as patients
10:41
um and the language that we use
10:43
I think it really gives power to the situation that
10:45
you know that we're approaching
10:48
and I I mean yes
10:50
it can feel isolating
10:51
we can feel alone even when we have friends
10:54
even when we have people that we know um
10:56
even when somebody's going through something that's
10:58
really similar to us
11:00
but I do think that it's important to recognize that
11:02
you know even in that isolation
11:04
we can also feel connected
11:06
we can also feel held you know
11:08
and just um
11:10
able to find the people who we click with
11:13
at the right time I think that that's kind of what I've
11:15
what I've experienced um
11:18
but I think that the yeah
11:19
the the language that we approach our disease with and
11:21
like kind of the phrases we use to describe ourselves
11:23
to describe what we're experiencing
11:24
like those are all such important words and um
11:27
so I would just challenge you guys listening
11:29
like what words are you
11:30
what words are you using to describe your journey
11:33
are you sitting in kind of all of the negative
11:35
all of the hard things
11:36
and only talking about those challenging
11:38
you know aspects or are you finding
11:40
despite all of that like
11:42
something that's a gift um
11:45
anyway okay
11:46
I'll get off my soapbox there
11:47
and one more thing to add to that
11:48
I think what's been fascinating for me to observe
11:51
because I'm you know
11:52
I'm very involved in ocular melanoma community
11:55
and my first encounter with the OM community
11:57
was a disaster
11:59
so I had to kind of tread lightly coming back in
12:01
but I'm also
12:02
very involved with the young adult cancer community and
12:05
um it's funny because I've
12:07
I've never like
12:08
I use the word fight my
12:10
my fight with cancer I beat cancer
12:12
it was a battle like
12:14
those words don't bother me
12:15
but I know a lot of people who hate the
12:17
the war analogies
12:19
and so I you know
12:21
I think it's important to note
12:22
what works for you might not work for somebody else
12:24
and that's okay like
12:25
we're all gonna
12:26
different things are gonna resonate with us
12:29
and one other other thing I'll say about that
12:31
is learning like
12:33
viewing and learning toxic positivity
12:35
has been something that I've learned more about
12:38
than I think I would have
12:39
if I was a healthy 30 something
12:41
I'm I mean
12:42
in my 40s now but um
12:44
you know there are some people who are like I
12:46
I can never have a negative thought
12:47
and I'm all positive all the time and um
12:50
and again you do you
12:51
if that's you that's great
12:53
um and there are some
12:54
people who sit in the you know
12:56
in the kind of negative tent
12:57
and for me I
12:59
I always tried to be as positive as I could
13:02
but when I was having those moments of anger the
13:05
you know the
13:06
the emotions that we think are bad and unnecessary
13:08
they are necessary so it was important for me
13:11
when I was feeling pissed off or scared or or
13:15
or sad to just kind of let myself and know
13:20
I'm gonna have this day
13:21
and I feel like you are so vulnerable in your posts
13:23
and you do a good job of saying like
13:25
you know what I'm having a pity party today
13:27
and then I'm gonna pick myself up and move on tomorrow
13:30
and that I think is so important is to um
13:33
if you are just a positive person 24 7 great
13:36
good for you but as humans
13:38
most of us are experiencing a range of emotions
13:40
and so it's important to kind of
13:41
make space and give a platform to the
13:44
the hard ones the challenging emotions that um
13:47
people don't always want to see on social media
13:49
but they're real and
13:50
and so it's important to let yourself have them
13:53
absolutely well Katie
13:55
thank you for sharing that
13:56
I mean I don't have anything to add
13:58
I feel like you just said it perfectly
14:00
um you mentioned just kind of like
14:02
relating to patients
14:03
and navigating relationships with patients
14:06
over the last goodness
14:08
how many years has it been since your primary diagnosis
14:10
again um
14:11
I mean it's been 13 years since my primary diagnosis
14:14
and it's been about five
14:16
coming up on five or past five years
14:17
I will be um
14:19
five years no evidence of disease in September
14:21
so four and a half years awesome
14:23
okay yeah
14:24
so I'm like
14:24
trying to like
14:25
timeline this a little bit
14:26
let's get a whiteboard and let's draw it out like
14:29
right here um
14:31
unfortunately
14:31
I don't have the ability to summon a whiteboard like
14:33
Harry Potter or you know
14:35
something like that but um
14:37
but as you're navigating relationships and like
14:39
advocating with other patients
14:40
which I do want to touch on
14:41
we can talk a little more about that in a few minutes
14:43
but um
14:44
navigating those relationships
14:46
especially when you come into the community
14:47
and you're fresh and whether you're freshly
14:49
you know finding out that you're metastatic
14:51
or just new to the primary diagnosis
14:53
it can feel I think
14:55
really vulnerable and scary to like
14:58
make friends right
14:59
to make those online friends
15:00
to meet people at an event like
15:02
hopefully you guys come to
15:03
I hope everybody comes to
15:04
Eye Believe this this last or this next year um
15:07
in Texas but like
15:08
meeting patients can feel really vulnerable
15:12
um how have you navigated relationships with patients
15:15
and like
15:16
what do you feel like is is really important
15:19
so my I alluded to my first encounter with um
15:23
an ocular melanoma community
15:25
and it was it was back in
15:28
I think it was maybe 2,016
15:30
and I was in a break it was in between treatments
15:34
and I thought I'm gonna do this
15:37
and I went and I it was
15:41
it was terrifying you know
15:43
I was all alone with all these people
15:46
and it was majority primary
15:50
and I said to someone who was there kind
15:54
like she could kind of tell I was getting overwhelmed
15:57
and I was like
15:58
I feel like there's just a bunch of primaries here
16:00
and she was like oh
16:01
that's not true you know
16:02
you just met so and so
16:04
her husband was a secondary
16:05
he died last month and I was like like
16:09
wait what
16:11
like
16:12
you just dropped that in the middle of the conversation
16:13
thank you so much that's
16:15
that doesn't help me
16:17
and at one point we broke out into small groups
16:21
well our group was small
16:22
the the primary group was massive
16:25
the the secondary group was maybe
16:26
I don't know like eight of us with a moderator
16:29
and it was um
16:33
and one guy talked and he had
16:35
had similar treatments to mine
16:36
and he was about to have
16:39
um I think he was about to have a liver embolization
16:41
which is a non clinical trial therapy that I had um
16:45
and then another guy was like yeah
16:47
I'm you know
16:48
cutaneous mets and I'm
16:49
no evidence of disease for
16:51
and I'm like dude
16:51
you don't have the same cancer
16:53
we do like
16:54
skin cancer is not the same as
16:56
so like
16:57
while I appreciate where you are
17:00
none of us can relate to you
17:02
um and then this one woman basically like
17:06
when it was my turn to talk
17:07
I was like
17:08
trying to be positive trying to say
17:10
here's the silver lining here's what I've done um
17:13
and this and I
17:14
and one of the things that I've done
17:16
is that I have not ever googled my cancer
17:19
and I come from a place of privilege
17:21
to make that choice because I come from
17:24
you know my sister is a GI nurse
17:25
my sister in law is a Crna my
17:27
my stepmom is a retired Crna
17:29
and my dad is a doctor so I understand that like
17:31
I come from privileged to be able to like
17:34
delegate that um
17:36
but I had talked about that
17:37
and this this woman
17:39
it's her turn to talk and she basically attacked me
17:41
and she was like I do my own research and
17:44
and so I clearly hit a nerve
17:46
and I got up and I left the room
17:49
and I literally went to my bag
17:50
my room I packed my bag
17:53
and I flew home early and I was a mess
17:57
um both the guy who sat next to me
18:00
who had had the same treatments
18:01
and the woman who kind of attacked me
18:03
they both passed away um
18:06
and so I took a big time out
18:08
from connecting with other patients
18:10
then I discovered First Descents
18:12
which is a nonprofit for young adults with cancer
18:14
and I I I
18:17
I thought I'm gonna give it one more go
18:18
because I was I was so
18:20
I have great support but like
18:21
nobody in my world understood what I was going through
18:25
and so through that this was my big learning
18:27
I don't need you to have my exact cancer
18:29
I need you to have my attitude
18:31
so that's my approach in connecting with people
18:33
and you can sense on the online communities
18:38
you can learn a lot about a person
18:39
by reading their posts reading their tone
18:43
um and so you make
18:44
that's how you make connections
18:46
you make you connect with those people
18:47
who have a like minded response to what you think
18:50
or what you feel and um
18:53
through the OM community
18:54
and through the First Descents community
18:56
I have made all of these incredible connections
18:58
and every single person that I really
19:00
really connect with like you
19:02
like Ashley
19:03
they have a similar outlook and attitude that I do
19:06
I'm not saying that ours is right
19:08
and someone else's is wrong
19:09
I'm saying it's for me
19:11
it's important for some to feel seen
19:13
to feel safe um
19:16
and you you just know
19:18
I mean it's the same as everyday life
19:19
there are some people that you really click with
19:21
and have chemistry with
19:22
and there are some people that you don't
19:23
and so for me that's been important
19:25
I've had to set a lot of boundaries on
19:27
connecting with other patients um
19:30
and my sort of rule is if you're ocular melanoma
19:33
I will try my best to talk to you
19:35
cause I can actually help you
19:36
if you're another rare melanoma
19:38
or even cutaneous melanoma
19:40
I depending on the connection and
19:43
and my bandwidth will try to talk to you
19:46
where I've had to set boundaries is
19:48
if you're someone who's you know
19:51
kids on a baseball team
19:54
and another kid's father has a rare brain tumor
19:57
I that does not translate
19:59
and just because it's spread to my brain it
20:02
it's a totally different animal and
20:04
and people healthy people
20:05
don't understand that
20:06
yeah no
20:07
it's tricky um
20:08
and so I've learned um
20:10
you know I had a friend reach out recently
20:12
and she had an old neighbor
20:14
who was 75 years old and stage 4
20:17
and she told her about my story
20:19
and she wondered if I could talk to her
20:20
and I was like what kind of cancer is it
20:23
and and I had to say no
20:26
because I am I work full time
20:28
I'm I've got a lot on my plate and um
20:32
and so that's a boundary that I have set
20:36
because I can't talk to everyone
20:39
you know you
20:39
and I can't talk to every single person um
20:42
but I'm gonna call someone today
20:44
whose mom was recently diagnosed with ocular melanoma
20:46
and she's getting her MRI results tomorrow
20:48
and I'm like yeah
20:49
I will like
20:50
try to call you on my way to my afternoon meeting and
20:53
and tell you what I can tell you
20:56
and I I'm not a medical professional
20:59
um you know
21:00
but we know we know how to navigate
21:02
we know where to get the second opinion
21:04
we know um
21:05
we know the importance of that strategy
21:07
and so that's that's
21:10
those are boundaries that I've set
21:12
in order to feel like
21:13
I'm being a good resource for people
21:15
but also protecting my own mental health
21:18
my own um
21:20
schedule and also my family's like
21:22
I have I am a dog mom
21:24
and I have a husband
21:25
and I can't spend every weekend doing all of the things
21:30
like I also want to
21:32
you know be with him and do the things that we do
21:35
live my life so
21:36
but it's a hard balance
21:38
no it's
21:38
it's such a tricky balance
21:40
and I I completely relate
21:41
just being where I'm at you know
21:42
in the non profit sphere and
21:44
and how I educate the patient community
21:46
a lot of them know my face
21:47
they see me online and I think that
21:50
you know we have to be sometimes in
21:53
in this kind of more public sphere where
21:56
you know you're a little more well known
21:57
because TIL worked for you
21:59
people talk about that all the time
22:01
yeah you're cancer free right now like
22:03
and so you're like a highly desired asset right
22:06
everybody wants to hear your story of hope
22:08
and I think that the
22:10
the challenge for us as individuals
22:11
especially if you're
22:12
it sounds like you're a lot like me
22:13
in the sense that you're pretty
22:14
empathetic towards other people
22:16
yeah yeah
22:17
like you wanna help everyone
22:18
and that's not a bad quality right
22:21
if we are empathetic people
22:22
it's not a bad quality
22:23
but we do have to be careful in guarding our energy
22:27
and I I want to point out
22:29
like you talked about the phase when you went to the
22:31
the patient meeting
22:32
and you just had a really challenging experience
22:34
walked away from that and were like
22:36
oh my gosh
22:36
like can't do this
22:38
I do want to just put that out there
22:40
I hope you know
22:42
if anything to kind of
22:43
maybe let that not be something to be scared of
22:48
um I think that it's just so important
22:50
that we approach meeting other patients
22:53
with the mentality of okay
22:55
like I'm probably gonna meet other people
22:57
who have a different viewpoint
22:58
they're all gonna be at different phases
23:00
but even within that sphere
23:02
like it is possible to find people who have
23:04
you know the same
23:05
the same outlook or a similar way of
23:07
of processing things
23:08
because I do think that there's power in being able to
23:11
you know verbally process
23:12
and talk through
23:12
what you're going through with someone else
23:14
um but the other piece of what I wanted to say was that
23:17
if you're in the midst of metastatic disease
23:20
right like
23:20
you were in the middle of metastatic treatment
23:22
and I just think that that
23:24
that heightens the the vulnerability of us as patients
23:28
and it can be so easy it can be so easy to and
23:32
and I want to just give credit to the
23:33
the woman that you mentioned
23:34
like when she
23:35
you know you felt like she was attacking you
23:37
she probably she probably felt like she was attacked of
23:40
like well
23:41
like I wasn't supposed to Google
23:42
what do you mean I wasn't supposed to Google
23:43
like we're all just so much more
23:46
I think we're all just so much more sensitive
23:48
and so sensitive yeah
23:50
and it's it's just
23:51
it's just one of those things that
23:53
I mean this is why I advocate for going to therapy
23:55
like I go to therapy
23:56
so I can talk about all those challenging interactions
23:58
yeah with somebody who can help me understand
24:02
you know my role and also my brain's role in
24:05
in understanding and processing
24:07
what's going on around me
24:08
and I just think that
24:09
when you're in the middle of a metastatic phase
24:11
of your journey you are in the middle of trauma
24:13
and it's okay
24:14
if you can't stay connected to patients constantly
24:18
it's okay if you take breaks
24:19
like I mean
24:20
it really sometimes you really just have to
24:23
I do
24:23
and it doesn't mean there's anything wrong with you
24:25
mm hmm I will say to that one
24:27
it was not your organization's event haha
24:31
um and two
24:32
I mean that was
24:34
that was 10 years ago and 10 years ago the
24:40
what was happening with our disease was way different
24:44
there were way fewer options
24:46
and I feel like
24:47
I have been in this community for 10+ years
24:50
and I have watched the hope rise
24:54
and I feel like what used to be
24:57
you know a
24:58
a way worse prognosis it's changed
25:01
it's getting there there are
25:03
there are options there's hope
25:05
I feel like our community has become a lot stronger
25:08
and I recognize that at that moment I
25:12
it was
25:14
it was too soon um
25:16
but also probably not the best approach
25:18
like
25:18
not the best approach for me to fly across the country
25:21
alone not know anyone
25:23
and I'm a friend hoarder like
25:24
I love making new friends and meeting new people
25:28
um but it was
25:30
it was too raw it was way too raw
25:32
yeah and
25:33
and I learned a lot about myself
25:35
and I Learned a lot about other people
25:37
and I learned a lot about the fact that
25:39
we all are approaching this differently
25:41
and that again
25:42
no one's way is right or wrong
25:44
um but we need to respect each other
25:46
and hold each other up
25:47
and let each other do what each other is gonna do
25:50
I might not agree with someone's
25:52
you know
25:52
with someone being on Google 14 or 16 hours a day
25:55
I'm not gonna do that for myself
25:57
but if if that's what works for them
26:00
then by all means like do
26:02
do what you need to do um
26:05
because we've all lost control
26:07
and I'm a control freak
26:08
and so when you get a cancer diagnosis you're
26:11
you no longer have control of anything
26:12
and so we're looking to control things we can control
26:15
so for me I
26:17
I started to become aware
26:19
more aware of my diet
26:20
that's where I tried to get more control
26:21
what can I do what can I control here
26:23
my diet my exercise became important for some people
26:26
it's the research
26:28
I admire people like you and others in the community
26:31
who understand the science way more than I ever will
26:35
and are educating the rest of us on
26:38
what is this therapy and why will it work for you
26:40
and maybe not I I am not
26:43
that is not my strength um
26:45
my strength is my empathy and my
26:48
you know ability to connect with people
26:50
and so I try to do that where I can
26:52
and the other thing that I've done is created my blog
26:55
so that I am able to point people
26:58
if I can't talk to them I can say
27:00
but I wrote this piece um
27:02
a lot of times when people are brand new diagnosed
27:05
they're like I heard about your story
27:06
I'm like cool
27:07
here's my clinical history
27:08
I have my clinical history on my blog
27:10
so that that can be
27:10
a starting point for somebody to understand
27:13
who do I maybe need to be talking to
27:15
what steps do I maybe need to be taking right now
27:17
um so I'm trying to kind of package it so that um
27:21
I'm saving myself from having to repeat the same story
27:24
over and over again yeah
27:26
but also be able to provide resources
27:28
I love seeing how much we're all coming together
27:30
as a community to try to educate
27:33
and we're taking what our strengths are to do that
27:36
and like
27:36
Chris White who's a rare
27:39
you know Chris right yeah
27:40
he's a rare mucosal melanoma patient
27:42
mucosal yeah
27:42
um so he's big on TIL
27:43
and he's trying to you know
27:45
he's doing a lot in the TIL community
27:46
so I do think it's amazing to me
27:47
to see how the patients stay involved
27:50
how the patients are trying to take um
27:52
what what Oprah calls trauma informed wisdom
27:55
and pass it back along to the next person
27:57
because we're all trying to figure this out as we go
27:59
and the challenge is that
28:00
none of us were all unique in our path
28:04
so it's gonna be different absolutely
28:05
every single one of us so
28:07
well Katie
28:08
with 13 years under your belt
28:10
as an ocular melanoma patient
28:11
I know that you have seen a lot of people come and go
28:14
and um
28:15
and I can imagine especially well
28:17
I don't even know that it
28:18
it would be more poignant
28:20
at the beginning of your TIL journey
28:21
versus now I think that
28:23
you know there's
28:23
there's room for it to still just be challenging
28:25
just across the board to feel that tension of like OK
28:28
like I'm grateful that I responded to my treatment
28:31
while also carrying the weight of knowing that
28:33
a lot of other people have not had that same outcome
28:35
whether it was with TIL or just generally
28:38
um do you talk about that with anybody and like
28:40
just how do you process losses in the community
28:43
with kind of the balance that you are a survivor
28:46
yes so I also have an amazing therapist
28:49
I will do high kicks for that all day
28:51
every day my therapist is also a survivor
28:54
she was amazing when I became no evidence of disease
28:59
she's like a freaking crystal ball reader
29:03
um she's just really a smart woman
29:04
and she she proactively reached out to my siblings
29:08
and basically sent them an email and was like guys
29:10
buckle up because I know this is super exciting for you
29:14
but like
29:14
you have no idea what she's about to go through
29:16
emotionally with this information
29:18
um and really like
29:20
kind of helped them anticipate
29:22
the grief that I would go through
29:24
which I think none of us could understand um
29:27
you know I have the
29:28
the devil mind
29:30
I can't I don't want to say the F word
29:32
but you know what I'm alluding to
29:34
of um
29:36
losing my mom you know
29:38
and like so it's
29:41
it's complex like
29:42
it's a really complex survival
29:44
and um and so I have my therapist
29:48
but I also do energy work
29:49
so I have this I call her this goddess named Joanna
29:54
and she does um massage
29:56
meditation reiki cupping and acupuncture
30:00
depending on what's happen
30:01
on what's happening with my aura that day
30:03
and she's always like
30:04
get on my table and she does her magic
30:06
and there have been so many times
30:09
where I've gone to her table
30:10
and I am just bawling because
30:12
my best friend's just lost their six year old son
30:14
or because my friend Lindsay
30:17
who went through all the same treatments that I did
30:19
passed away and left behind three teenagers
30:22
and it's it's this constant
30:24
like I I
30:25
it's hard because I feel bad complaining about it
30:28
because I'm still here but it's this constant reminder
30:31
and then it makes me spiral of why am I still here
30:35
what is my purpose what am I doing with my life
30:37
am I living it right um
30:39
that first year after I became no evidence of disease
30:42
anytime I experienced a non positive emotion
30:45
I would like beat myself up
30:47
and so it was this really like
30:50
I just had to kind of figure out my new cadence and
30:54
like show myself Grace
30:56
and Joanna would help me
31:00
she knew that exercise was important to me
31:02
and so she would she was the one who suggested
31:07
when you experience a loss in your community
31:11
I want you to do a hike in that person's name or honor
31:16
and then let it go like
31:19
I cannot hold on to the grief of every single person
31:23
that I've lost on top of the grief from losing my mom
31:27
that is still something I carry every single day
31:30
and not that I'm letting go and don't care
31:31
but it's like finding a place and finding a purpose
31:34
and so for me it's been um
31:36
and even you know for
31:38
for my friends fighting
31:39
my friend Aaron got his TIL a couple weeks ago
31:43
and I happened to be at the state Capitol in Denver
31:46
Colorado um
31:47
advocating with the American Cancer Society that day
31:50
and so we got to make a sign of
31:52
you know I stand for
31:53
and I wrote his name and then I didn't
31:55
I did a bike ride that night
31:56
and I just thought of him while I did it and
31:59
and so I for me
32:01
it's that physical it's the movement
32:03
it's the carrying people
32:04
when I'm physically moving my body
32:06
because I can um
32:07
and honoring them in that way
32:09
and that's something that has been
32:10
I think a healthy way for me to
32:13
you know cause an alternative would be like
32:15
you get a large Dairy Queen Blizzard
32:16
which I would also love but I'm not doing that
32:19
hello do you sometimes sometimes
32:21
um so yeah
32:22
finding something that's like
32:23
healthy for my mental state
32:25
healthy for my physical state um
32:27
and allows me to kind of honor that person and then um
32:31
but not have it
32:35
take me down completely
32:36
and I'm not saying that that works all the time
32:39
cause there are some
32:40
there are some that are way bigger gut punches
32:42
because
32:42
you got to be really close friends with that person
32:45
yeah and I know
32:46
I don't I think
32:48
I think what you shared earlier
32:49
like
32:50
kind of as you were gathering your thoughts around this
32:52
was you talked a lot about how
32:54
you know the therapist that you've worked with
32:55
talked a lot about the grief
32:57
that you were going to experience
32:58
after being told you're gonna be okay
33:02
mm hmm like you're
33:03
you know that we're
33:03
we're really pretty confident
33:05
like you're
33:05
you're doing great
33:06
and you've continued to stay doing great and
33:09
and there I think that
33:10
that we talk a lot about the grief that we get right
33:13
of getting the cancer diagnosis
33:15
but I don't think that we talk a whole lot about like
33:18
I think we call it survivors guilt
33:21
yeah but
33:21
I think it's maybe better to call it survivors grief
33:25
because yeah
33:26
there's a lot of grief of um
33:29
I don't know like
33:30
just grieving
33:31
the life that was changed
33:33
in the period of time
33:34
when you were actively fighting cancer
33:35
the kids that I never get to have because cancer hijacked my thirties
33:39
I mean that there's so much grief
33:41
there's so there's so much loss
33:44
the loss of the life that I was living
33:46
would I go back and live that life
33:48
no like
33:50
I love the you talked earlier about
33:51
like the lens we look through now
33:53
like I which is funny cause it's eye cancer
33:55
like the lens in which I view my life I
33:59
I'm so grateful and I appreciate it so much um
34:03
but every day there's a reminder of the fact that like
34:06
I didn't get to have a family um
34:09
and that's hard that's hard for my husband and me
34:11
there was a baby shower this weekend
34:12
and I reached out to the host and I was like no
34:15
I don't do baby showers typically because it's hard
34:19
and she and she struggled with IVF
34:21
so she's like I totally get it
34:23
but it's setting those boundaries
34:24
and stating those boundaries um
34:27
but I love what you say about survivors grief
34:29
cause that is 100% what it is
34:31
it's grief of the loss of a different life
34:35
um but then there's also survivor's gratitude
34:38
and I have that as well like
34:40
there's so much gratitude
34:41
I when my
34:42
when my oldest nephew was born
34:44
a very very dear friend got me a T-shirt that says
34:47
I'm Pete's Aunt Kate
34:49
and I have a lot of pictures of me growing
34:51
like him growing up and me having the T-shirt on
34:54
and I wore it to his high school graduation
34:57
it was a big hit people were like
34:58
oh my god
34:59
this is amazing but I was like
35:01
I have this side by side picture of
35:03
you know little NICU
35:04
preemie Pete
35:06
and then Pete who now towers over me
35:08
and um
35:10
I have so much gratitude in those moments
35:12
you know I took that day off work and I was like
35:14
I'm out of pocket like
35:16
I celebrate big um
35:19
the the milestones in my life
35:20
that I get to be here to witness
35:22
and I'm so so so grateful for those
35:24
I absolutely love what you said about survivors
35:26
grief survivors gratitude
35:28
there's this duality I think that
35:30
you know we have to come to learn the older we get
35:32
that it's possible to feel two things at once
35:34
or five things at once um
35:36
I love the movie Inside Out that talks about like
35:38
you know all the emotions at the control panel
35:40
and it's like they're all there
35:41
they're always there all the time
35:42
it's just who's getting the most noise
35:45
um so Katie
35:47
to end
35:47
I wanted to give you a chance to just chat a little
35:49
about one of the most meaningful things that I have
35:51
I mean yes
35:52
you connect with patients
35:53
and you do such a a beautiful job of um
35:56
talking to people individually when you can
35:58
um but I also recognize that sometimes
36:01
it's not something that we have the bandwidth for
36:04
personally and that sometimes
36:05
the bigger kind of meaning making
36:07
that we can make of where we are in our disease
36:10
is staying involved in the community
36:12
by advocating so like
36:14
why do you feel like you shifted from where you were
36:17
as a you know
36:18
survivor you know
36:19
thriving but then surviving
36:20
and to now where you're at with
36:22
you know really strongly advocating for research
36:25
for ocular melanoma for all of it
36:27
um I think for me
36:30
that has been my purpose so um
36:34
I I gave my first talk in 2,017
36:40
I was getting a recognition
36:43
with a group of other patients um
36:46
for survival and ocular melanoma
36:49
and I was asked on behalf of the other patients
36:52
to give a a talk
36:54
and I was terrified of public speaking before that
36:57
and I got up there and I was like wow
37:01
this is I think
37:02
what I'm supposed to be doing
37:03
like it
37:04
it felt um
37:06
I just felt very empowered
37:07
I felt like I was able to take my trauma
37:11
and turn it into something good
37:13
and um
37:15
and so from there I just
37:16
cause a lot of times people are like
37:17
I really want to do more advocacy
37:19
it's you just have to manifest it
37:21
you have to put it out to the universe
37:22
you have to tell people um
37:24
and so I started
37:26
I think in maybe 2021 I gave my first like
37:32
kind of big talk at a science conference um
37:36
and it is just snowballed from there
37:38
and um
37:39
I do it for every single one of my peers who has
37:43
who has passed
37:44
and every single one of my peers who is still fighting
37:46
because I know that in the thick of my
37:50
you know
37:51
fight um
37:53
I didn't have the bandwidth
37:54
like you don't have the energy to
37:57
to get up and fight but I am in a place now where I can
38:02
and I know how important it is
38:04
and I'm seeing the devastating impacts
38:07
of what's happening with science right now
38:09
and my doctor who saved my life lost funding
38:13
and that is and
38:14
and I have talked to patients
38:16
that he's had to turn away
38:18
and that is terrifying to me
38:21
and it's not okay and um
38:23
and so I'm gonna do whatever I can to help
38:26
to make a difference to
38:28
to try to make noise um
38:31
to try to get people to understand that
38:34
just because it's rare
38:35
doesn't mean that our lives don't matter too
38:38
and we're not the masses we're not a a
38:42
a mainstream cancer we are just this
38:44
like little
38:45
but it's it's affecting six in a million of us
38:47
and I and so
38:49
I will continue to use my voice and my platform
38:52
and tell my story and
38:54
and also through writing
38:55
I wrote that story for Huffington Post
38:58
about navigating clinical trials
38:59
because I think that a lot of people get diagnosed
39:02
and it's I don't know
39:03
the first time in their lives
39:04
that they've been in this position
39:06
timing is critical their next move is critical
39:09
they're getting pressure from a doctor to do something
39:12
my doctor was saying you gotta start Yervoy
39:13
you gotta start Yervoy
39:15
if I would have listened to that doctor
39:16
I would be dead and so my story
39:20
there's a lot of lessons from my story
39:22
that can help people
39:24
and I had someone reach out to me after that article
39:27
and they said like
39:29
a few weeks later they got a like
39:31
critical diagnosis
39:32
and because they had read what I wrote
39:34
they were able to like
39:35
navigate properly so it's again
39:38
it's taking what I've learned
39:39
taking the hard lessons
39:40
and trying to make it so that the next person
39:42
who doesn't have Doctor Jim Orton as their father
39:45
like I do knows what to do and has the resources
39:49
um because I wouldn't
39:51
I wouldn't be here if it weren't for him and um
39:54
and I want to make sure that people know what to do
39:56
so yeah
39:58
no I think it's absolutely incredible
40:00
and I mean
40:01
just watching what you do
40:02
and I know like again
40:03
we're giving the disclaimer that the
40:05
the credit where credit is due
40:06
to experiencing a metastatic diagnosis
40:09
if you're in the thick of a metastatic diagnosis
40:10
that may not be the time for you to like
40:12
go to Capitol Hill or you know
40:14
stress yourself out about
40:15
you know am I doing enough
40:17
you're trying to survive and to thrive where you're at
40:20
and if advocating helps you do that
40:23
then great but if it doesn't
40:25
then it's not where you belong right now
40:26
and you just need to focus
40:27
you know focus on
40:28
focus on what's most important to you and
40:30
and I think that as patients
40:31
too often we see and we compare ourselves to
40:33
what other people are doing
40:34
and we say oh
40:35
I should be doing this um
40:37
and I think we we
40:38
do ourselves a disservice when we do that
40:39
so um
40:40
but thank you Katie
40:41
for like everything that you do
40:43
yeah it's
40:44
it is like there really is no right or wrong
40:46
I've said from the get go of getting this diagnosis
40:48
like there's not like a rule book like no
40:50
this cancer didn't come with a rule book of like
40:52
what we do and what we don't do and like
40:53
what's okay and what's not
40:55
we're figuring it out
40:56
and we're figuring it out every single day
40:58
and it looks a little different in different seasons
41:00
in different years different political climates
41:03
like different everything
41:05
like
41:05
everything makes it feel different at different times
41:07
um and I know like
41:09
you know even now Katie
41:10
like you mentioned earlier when we were chatting
41:12
like
41:12
you still feel the anxiety coming up on scans and like
41:15
just the doctors appointments like that
41:17
you still have to manage all of that
41:18
that doesn't go away
41:19
just because you are considered disease free
41:22
the paranoia runs deep in these bones
41:25
yeah haha
41:26
no I get it
41:27
I totally get it yeah
41:29
like I literally like
41:30
my elbow twitches and I'm like
41:32
I had a ganglion cyst last year on my wrist
41:34
and I told my sister I'm like I'm
41:36
it's sarcoma I'm gonna have to shave my head
41:38
I'm never gonna wear mascara again
41:40
like
41:40
I'm like telling her all the things and she goes like
41:42
I have gone down the rabbit hole yeah
41:44
I go they're gonna amputate my arm
41:45
and this is what's gonna happen
41:46
and she goes is this what it's like to be you
41:48
and I said this is 100% what it's like to be me
41:51
like I'm just
41:51
yeah yeah
41:53
so I get it yeah
41:55
um well Katie I
41:56
I mean I feel like
41:57
there's so much more that we could chat about
41:58
I would love to keep you on here
41:59
but I wanna go ahead and let you go
42:00
get back to the rest of your day
42:02
get back to living life but Katie
42:04
thank you for sharing your story
42:05
for sharing the hope that you have
42:06
and just for being real with us
42:07
thank you thank you for doing this and for um
42:10
being who you are to our community
42:13
well thank you
42:14
I appreciate it um
42:15
and honestly
42:15
I couldn't do it without the support of people like you
42:17
so thank you for being one of those people in my life
42:19
um I would love to have you come back
42:21
and maybe we can chat a little more
42:23
like in depth about the advocacy piece and like
42:25
how you've kind of put together your
42:27
your path of where do you advocate and why and how um
42:30
I think that would be kind of
42:31
a really unique thing for us to
42:33
to just to share because if you are living with
42:36
you know primary ocular melanoma
42:38
and you have the lowest risk of metastasis
42:40
and you're sitting here feeling like well
42:41
I want to do something
42:43
maybe that's a direction that you could go
42:45
um because I think that
42:46
I think that you said something earlier about how
42:49
like it's so important that we just find what is um
42:52
kind of giving us purpose
42:54
right giving us an individual purpose
42:55
and that we each have our own little spot
42:57
and that we you know
42:58
we fit into the puzzle that is ocular melanoma
43:00
and each of us is important right
43:03
every single one of us yeah
43:05
every single person who's come before
43:06
and who we've lost but also like
43:08
each of us right now like
43:09
where you're at today like
43:10
there's a reason for that
43:11
so let's figure that out
43:13
yeah I'd love to
43:14
I um
43:15
message with Megan yesterday
43:16
so we'll yeah
43:18
we'll figure something out
43:18
no it'll be so good
43:19
okay well
43:20
I'm excited to get to chat with her too because
43:22
you know we get to co host
43:23
and that means we get to have the best of both worlds
43:24
sometimes yeah
43:26
awesome
43:27
awesome okay
43:28
well just a huge shout out to our sponsors
43:30
we've got Ideaya Biosciences
43:32
Delcath Systems Castle Biosciences
43:34
and Aura Biosciences who helped to sponsor our podcast
43:37
and our YouTube channel guys
43:38
thank you so much for being our sponsors
43:40
and a huge thanks to our listeners for being on
43:42
if you are listening and you haven't had a chance yet
43:44
go ahead and drop a comment below
43:45
tell us where you're from
43:46
um and then make sure that you connect with Katie
43:48
if you would like and just read her story
43:50
we're gonna link those links
43:51
that you shared for your blog
43:52
and we'll make sure to you know
43:54
link anything important that Katie wants to share
43:56
um I think the Huffington Post article would be great
43:58
and so I mean
43:59
you know we're gonna give you guys those resources
44:01
so make sure to check those out in the comments
44:03
and the description below
44:04
with that I will let you go
44:06
Katie and we will see you next time see ya