Latest / The Eye Believe Podcast / My 15 Years | Episode 13: What Long-Term Survivorship Really Looks Like

Transcript

My 15 Years | Episode 13: What Long-Term Survivorship Really Looks Like · The Eye Believe Podcast

0:05
hey everyone welcome back to Melody's 15 years
0:08
today we're gonna talk about long term survivorship
0:12
after 15 years what the heck
0:14
what comes next
0:16
hey melody hi
0:19
alright a lot
0:20
what's next ha ha ha
0:23
a lot happens around 10 years
0:25
that's kind of the crux
0:27
yeah a lot happens at 10 years
0:29
um everything kind of changes
0:31
there's kind of milestones that you hit
0:34
five years 10 years
0:35
15 years are kind of big milestones
0:39
five years usually your scanning changes
0:41
um if you're a class 2 it might change
0:44
but usually if you're a class 1
0:46
you might go to once a year
0:48
um at 10 years
0:50
a lot of people don't know what to do with us
0:52
and it's it seems oddly um
0:58
it's an odd situation to be in I guess
1:00
cause you think well
1:01
I'm 10 years out you should still support me
1:03
but there's a lot of physicians who think
1:06
we don't need to scan you anymore after 10 years
1:08
and that is kind of
1:10
this weird conversation you have with your physician
1:13
it's like well
1:14
I don't want to not be scanned
1:15
I still want scans what do we do
1:19
and some doctors will say nope
1:21
you're fine go
1:22
you're good
1:23
and other doctors will say
1:25
well let's scan you every year
1:27
or every two years let's move to ultrasound
1:30
let's do something different
1:32
and it can cause some anxiety
1:34
because we know that ocular melanoma can pop up
1:39
20 or 30 years later it's not
1:41
it's not common but it can happen
1:44
so you can feel kind of um
1:48
in limbo a little bit like unsupported like oh
1:51
I don't know about this
1:52
because you've been relying on those scans for so long
1:55
now to all of a sudden not have scans
1:57
what the heck I need scans
2:00
so I think that's just a good time to really
2:02
sit down and talk to your doctor
2:03
and say this is how I'm feeling
2:06
I do see in the Facebook groups
2:08
a lot of people will say
2:09
my doctor doesn't want to scan after 10 years
2:11
and then oh
2:12
there's this uproar in the community
2:14
people are saying oh no
2:15
you have to have scans and other people are saying
2:17
no it's okay
2:18
you don't need scans
2:19
and so it causes all this confusion
2:22
there's nothing wrong with going to ultrasounds
2:24
you just have to be kind of careful
2:25
especially if you are an overweight person
2:28
you have to make sure that you're getting a good
2:30
ultrasound and that your ultrasound tech is good
2:33
which is kind of difficult sometimes
2:35
if you've never had one how do you know
2:38
uh but you have to kind of rely on this
2:39
your ultrasound center
2:41
so ultrasounds could be a good option to move to
2:45
uh the other thing is after about 10 years
2:50
you kind of don't really relate anymore
2:53
um I know
2:54
I know one of my friends tells me all the time well
2:57
I'm just not relevant anymore and
2:59
and I think a lot of us feel that way
3:01
we're just not relevant we
3:03
we don't fit in a box anywhere
3:04
we're not
3:06
we're not early on we're not newly diagnosed
3:09
we're kind of way past most of the milestones
3:13
so what do they do with us
3:15
and I think most doctors don't know what to do with us
3:18
that's true yeah
3:20
but I mean
3:20
what an inspiration you guys are for the community
3:23
at the same time
3:25
yeah but
3:26
you know a lot changes in 10 and 15 years
3:28
there's a lot change when I was first diagnosed to now
3:32
so much has changed so somebody will ask me
3:34
I'll be like I don't know
3:35
I didn't have that done I didn't have castle testing
3:39
I didn't have any biopsy I didn't have any testing done
3:41
so while I think you should have it done
3:44
I can't really tell you anything about it
3:46
cause I don't know um
3:48
there's
3:49
you know there's blood tests
3:50
and all this stuff that now
3:51
that doctors are doing early on in diagnosis
3:53
that just wasn't done 10 and 15 years ago
3:56
so you watch
3:58
you kind of watch the community move ahead of you
4:02
if that makes sense there
4:05
new people are being diagnosed
4:06
new people are coming in new people are more active
4:09
and you start watching the older people
4:11
the older you know out
4:13
people start to fade away
4:15
they go on with their lives
4:17
you don't see them in the groups as much
4:19
they check in every now and then
4:21
you know because what happens
4:26
which is a good thing is you get a life back
4:28
you you're able to stop and breathe and be like
4:31
oh my my world
4:33
does not have to revolve around
4:35
ocular melanoma anymore
4:36
I can kind of take a breather and go do good things
4:39
and I don't have to check in all the time and
4:41
you know you kind of get some freedom
4:43
and a little bit of relief that you've made it
4:46
I could see that for sure yeah
4:48
I mean it's so
4:50
in all encompassing of your life
4:52
when you're first diagnosed
4:54
I mean you can't see anything else right
4:56
so to be able to have that freedom to say OK
4:59
I can I can put you in a box
5:00
and walk away from you for a little bit
5:02
I mean that's gotta be a great feeling
5:05
it is and people say
5:06
well how often do you have scans
5:08
well not regularly
5:10
I I go between MRI's and ultrasounds and
5:14
you know if I'm
5:15
if I'm three months late on my
5:16
on my scan I don't worry about it
5:19
my doctor doesn't worry about it
5:20
it's not like before
5:21
when you're going every three months
5:23
if you're a week or two late
5:24
everybody freaks out oh no
5:26
you know you just
5:27
you start to become more flexible
5:29
and more free about if you're gonna do it or not do it
5:33
you can start making different decisions
5:35
um the probably the best thing is that you could
5:37
you start planning your life again
5:40
you know um
5:41
when I got divorced I took the money from the house
5:45
and I let my ex husband take the 401k
5:49
I didn't need a 401k
5:51
I wasn't gonna be here long enough
5:53
to even see a retirement so why do I need a 401k
5:57
it's like oh
5:58
about 60 years old I'm thinking
6:00
you know I didn't plan that very well
6:03
I don't have a retirement savings
6:05
I don't have anything what do I do now
6:08
because I think
6:10
when you're in the middle of the early diagnosis
6:13
you don't picture yourself living so long
6:18
and so when you live 10 and 15 years out from diagnosis
6:23
it's like when you look backwards
6:24
you're like ooh my
6:25
my world was very small back then
6:28
and you make decisions that not
6:32
you don't look at 15 years later
6:35
when I was first diagnosed
6:36
I thought I'd be dead by 15 years
6:39
and here I am
6:41
well we're glad that you are here
6:43
well me too
6:45
but you know
6:46
it's just you don't
6:46
you don't think about it when you're newly diagnosed
6:49
or when you're in your first five years
6:51
you know your first five years
6:52
everything is just so magnified
6:54
and then five to 10 years
6:56
you kind of get that little bit of a breather
6:58
and you're like okay
6:59
things aren't so magnified
7:00
and you you start kind of
7:04
not making it the center of your world anymore
7:06
and then from from 10 to 15 years
7:09
like boy
7:09
I hardly ever think about it anymore
7:11
I have to get the reminder from my doctor
7:13
oh I better go see my doctor
7:15
cause I don't even think about it
7:16
I don't look for that date on the calendar anymore
7:20
and how do you feel when you do get scanned
7:23
do you still get scanxiety
7:27
no I don't
7:29
I don't
7:29
because I honestly don't think that it's gonna happen
7:33
I I think
7:34
oh well
7:34
you know it's a pain
7:36
I have to take time to go do this yuck
7:38
I don't like that
7:39
but I don't get the scanxiety I used to have
7:42
when I was constantly looking for a metastatic disease
7:46
right and
7:48
being that they told you you were metastatic
7:50
in the very beginning I'm sure that you know you
7:54
you know what it feels like to be told
7:56
you're metastatic
7:57
I'm sure there was an extra layer of anxiety
8:00
going into your scans
8:01
just because you had had that experience
8:03
mm hmm yeah
8:05
well you worry
8:05
I mean I do remember going in for scans and thinking
8:08
oh god
8:08
this is gonna be the scan
8:10
I just know it I can feel it
8:11
this is gonna be the scan
8:12
and then you know
8:13
the doctor's like nope
8:14
you're all clear and you're like
8:15
wait really
8:16
and now I would go into the appointment thinking oh
8:20
I'm all clear
8:20
and I would be surprised if he said I wasn't right
8:23
so it it's reversed
8:27
yeah so now this year is 15 years
8:35
what kind of plans do you have
8:38
now that you've hit 15 years
8:40
what are you looking forward to
8:43
I'm looking forward to retirement
8:46
I I've never thought about retire
8:48
well I mean
8:48
I wanted to retire but
8:49
I've never really thought about
8:50
what retirement would look like
8:52
cause I didn't think I would still be here
8:54
so now that I'm at the age where I can retire
8:57
I'm really excited for that
8:59
I'm excited for some free time
9:01
and maybe some more travel and
9:03
and you know
9:05
a next step in my life
9:07
what is the next step gonna look like
9:08
because when I was 48 I never thought I would be 65
9:13
you know next year I'm gonna be 65
9:15
never thought I'd ever see that
9:18
so it's a milestone that I was not looking
9:23
forward to that
9:23
all of a sudden it's here and I'm excited for that
9:28
that's great and what are you gonna do in retirement
9:33
do you know
9:35
I'm gonna piddle
9:37
ha ha ha OK
9:38
I'm not doing anything I'm gonna piddle
9:40
I'll still be involved in the community
9:42
I'm still gonna be involved with A Cure In Sight
9:44
but I don't wanna run the organization every day for
9:47
yeah the rest of my life
9:49
I would like somebody else to come in
9:50
and new blood and new ideas and new vision
9:53
because I think that's important
9:54
and I would like to just have time to piddle and um I
9:58
I would like to just go mess in my yard or
10:01
you know go take a drive
10:03
just do whatever I wanted to do
10:04
and not have to worry about
10:06
is this being handled is that being handled
10:08
you know where we at with this
10:09
where we at with that yeah
10:12
be nice
10:13
a week long weekend instead of just a two day weekend
10:17
that would be exciting
10:19
that would be very wonderful
10:21
I'm not one of those people
10:23
that wants to work till I'm 80
10:24
I I don't want to be that
10:25
I want I
10:26
I'm looking forward to just not having to do anything
10:31
yeah it sounds like a dream come true to me too
10:37
I'm one of the people all the time
10:39
that are in their 70s they're like oh
10:41
I don't I could never quit working
10:44
I I love working
10:45
and I'm like oh well
10:46
you and I are two different people
10:47
because that's not me
10:50
yeah I always think it's funny
10:51
when people complain about being bored
10:53
I'm like I don't understand what that means
10:55
like I've never been bored
10:57
I
10:57
I have a million things I wanna do that I think are fun
11:00
and I I can entertain myself all day long
11:03
I don't know what that means
11:04
I don't know I'm not
11:06
no I
11:06
I would not be bored there's so many things I would
11:09
you know I work on my house
11:10
work on my yard you know just
11:13
there's just things that I would do
11:15
I don't have enough hours in a week as it is right now
11:19
so I'm excited to be able to have time
11:21
where I don't know what to do with myself
11:23
I think that would be exciting
11:24
cause who knows you know what that
11:26
what will maybe create something new in that
11:31
or maybe a hobby that I don't
11:33
didn't know that I wanted
11:35
you just you just don't know
11:36
but
11:38
I don't have the free time to explore anything
11:40
right now so
11:41
that's very true I think a lot of creativity and
11:45
and brilliant ideas are born out of free time
11:47
when you have the time to sit and think
11:49
and let inspiration hit you
11:52
you're not busy and doing
11:54
you know a hundred other things
11:56
yeah yeah
11:57
I think it would be
11:58
it would be fun to just not have any
12:00
just be able to you know
12:02
go play
12:03
mm hmm so how many roughly
12:07
of you are there that are at 10 or 15 years
12:11
are there a lot or just a few
12:13
well because we only know who's in the community
12:15
there's quite a few of us in the community
12:17
but they're just not as active as they used to be
12:20
yeah but they don't need to be
12:23
no they've gone on with other things
12:25
and kind of put ocular melanoma in the rearview mirror
12:29
and rightfully so I think they should
12:32
you know I think it is
12:33
I don't think there's anything wrong with becoming
12:36
irrelevant I would love to be irrelevant
12:38
I would love to not um
12:40
be a statistic it would
12:42
it would not a bad statistic
12:43
a good statistic would be great
12:45
I think we need to count more of us
12:47
but I there's a
12:49
I don't even know the number
12:50
but there's probably hundreds of us
12:52
that are over five years and over 10 years
12:56
wow yeah
12:57
that's very I know 25
12:59
about 25 right now that I know
13:00
that are still in the group
13:02
that are um
13:05
that are around around 15 years
13:07
um somebody just made a comment
13:10
on one of my posts on Facebook
13:12
and said that this is also their 15th year
13:15
and they're also their birthday is in July
13:17
and my birthday is in July
13:18
so it's like oh wow
13:19
we're Omie twins cause we were both
13:21
we're both July babies and we both are
13:24
in 15 years or we didn't have our
13:26
we weren't diagnosed the same month but
13:28
but it's it's exciting to um
13:32
to meet people that are so far out and are doing well
13:36
and they have a life and their
13:38
you know ocular melanoma is no longer their center
13:41
and I think that's the big thing
13:42
is that as you move through the
13:45
the progression of
13:48
um on
13:48
maybe not the progression is not the right word to use
13:50
as you move through your life
13:52
your life goes on ocular melanoma doesn't
13:56
starts fading a little bit
13:57
it just doesn't it's not all encompassing anymore
14:01
we've we're
14:02
I think
14:03
I think patients are learning how to live with it
14:06
better than we did when I was first diagnosed
14:10
that's fantastic and for everybody listening
14:13
tell them when your birthday is no
14:18
I don't my birthday is in July
14:21
what day I'm not gonna tell
14:24
say it
14:26
why because July 23rd
14:29
which is today you guys
14:32
today this airs on July 23rd
14:34
so happy birthday to you from all of us in the
14:37
A Cure In Sight community cause today is July 23rd
14:41
thank you she doesn't believe me
14:43
alright what else do you wanna talk about in this one
14:51
I think there's a freedom that you get
14:53
as you progress through the years
14:56
without metastatic disease
14:59
that we don't look at when we're first diagnosed
15:02
we think oh
15:03
I'm never gonna see that milestone
15:05
and I just want people to know that
15:07
there's a lot of us that have reached that milestone
15:09
so don't think that it's not obtainable
15:12
because it is I think the community
15:14
we get so bogged down with metastatic disease
15:18
we're going in having scans
15:20
we just know any moment it's gonna happen to us
15:23
and this realization after it didn't happen to us
15:26
and you look backwards you think wow
15:28
I kind of wasted a lot of my time
15:30
worrying about something that never happened
15:33
and I think that's the big takeaway
15:34
don't worry about something
15:37
until you have to worry about it
15:39
it's a hard thing to do but it's a good
15:42
it's a good thing to try to to do
15:45
and maybe don't give your 401k away
15:48
don't give your 401k away man
15:51
that was not a smart move on my part
15:54
but that's alright
15:55
yeah that's okay
15:56
I probably still came out of better end of it
15:59
cause I got the I got
16:00
I did get a good divorce settlement
16:02
so I'm doing fine but um
16:05
good as I but I do think
16:07
oh that probably was not good planning
16:09
but this is what happens
16:11
that's a very good lesson for everybody out there
16:13
don't short change your life
16:14
because you don't know how long you have
16:16
don't don't think you're not gonna see retirement
16:19
don't think you're not gonna see this milestone
16:22
because I know plenty of people that are metastatic
16:24
that's like oh
16:25
I'm never gonna see a grandchild
16:26
then you know
16:27
the next thing you know they got three grandchildren
16:29
and they're still doing fine
16:30
they're living with metastatic disease
16:32
but it's maintained and they're doing fine
16:35
so don't
16:36
don't give yourself an expiration date too readily
16:40
you know let it
16:41
let it happen when it happens
16:42
don't don't rush it along
16:45
absolutely and you know
16:46
also your neighbor who has no diagnosis
16:50
who thinks they have forever and puts things off
16:52
they could get hit by a bus tomorrow
16:54
and they never got to do anything
16:56
cause they kept putting it off so
16:58
you know
16:58
you go my mother had two friends um
17:00
it was a couple
17:02
and they both retired and went to Lake Tahoe on a bus
17:08
on a they went to Lake Tahoe on a vacation
17:11
and they were gonna go retire
17:13
they were gonna see the world
17:15
and I kid you not
17:17
they were crossing the street in Lake Tahoe
17:19
and got hit by a bus and they both died instantly
17:22
oh my goodness
17:23
so don't when somebody says you could get hit by a bus
17:26
you can it's a real thing
17:28
it happens
17:29
it does happen and yeah
17:31
and anything anything can happen
17:32
I mean
17:34
you just don't know so yeah
17:36
don't short change yourself
17:38
but also don't put things off
17:39
and try to
17:41
you know use your time wisely
17:43
but don't succumb to fear
17:47
that you're not gonna have enough
17:49
no don't get so wrapped up into the
17:51
the fear of it all
17:52
because if I can look backwards and change things
17:56
which I obviously I can't
17:57
but if I could
17:58
I wouldn't be worried as much as I worried
18:00
I wouldn't I wouldn't have been had so much anxiety
18:04
I would have not said no as often as I said no
18:07
I would have said yes more um
18:12
I I think it's a
18:14
it's a hindsight's 20 20
18:16
but at the same time
18:17
I want people to understand and learn from my mistakes
18:22
in the first five years
18:23
when you spend every day thinking that tomorrow
18:25
you're gonna die that's not a
18:27
that's not healthy it's not a good way to be
18:30
because there's a very good chance that you won't
18:32
and people that say well
18:34
I'm class two prame positive
18:36
there's plenty of people that are class 2
18:38
prime positive that are still alive after five years
18:41
and there's a good amount of class ones that are not
18:44
so Castle testing is a great prognostic tool
18:48
but it's a statistical tool
18:52
it is not a sentence it is not a guarantee
18:56
it does not mean this is gonna definitely happen to you
18:59
so don't just try not to go down that rabbit hole
19:02
cause it's very scary hole to find yourself in
19:06
I think that's very well said
19:09
very wise words
19:10
that we can all take away and implement in our lives
19:13
and you know like you said
19:15
just do the best you can enjoy the time that you have
19:19
don't try to analyze it and figure it out
19:23
cause you none of us can do that anyway
19:25
so just live your live your best life
19:29
that's it live your best life
19:30
and looking backwards I
19:32
I did live a good life
19:33
but I could have done a lot of things a lot different
19:36
um a lot of things happen in your life
19:38
that you don't expect
19:40
but you regroup and you move forward
19:43
and I think that's the the thing
19:45
is that we all need to be a little more flexible
19:47
little more flexible with things that are happening
19:49
a little more flexible when something bad happens
19:52
but also be flexible when something good happens
19:55
don't say no to the good stuff
19:56
because you gotta live a good life
19:59
there's a lot of good stuff out there
20:00
and you know
20:01
five years 10 years
20:03
15 years all these are great milestones
20:04
celebrate them uh
20:06
for people who don't know
20:07
we have a spot on our website
20:09
this called celebrations and you can
20:11
it's not just for celebrations of life
20:13
it's for celebrations of living
20:15
right now when you reach certain milestones
20:17
you can send us photos
20:18
and we'll actually put them on our website
20:20
and you can tell your story
20:22
and that gives hope to people that are newly diagnosed
20:24
because they can see the stories
20:26
of people that are reaching these milestones
20:29
and it it is hopeful
20:31
um
20:32
newly diagnosed people like to hear
20:34
that we're living long healthy
20:36
happy lives
20:37
and that we're getting through our skin anxiety
20:41
we're moving forward and it's not all doom and gloom
20:44
and they need our stories to give them hope
20:47
to get them through to where we are
20:49
yeah
20:50
and with all the trials and new drugs they're testing
20:54
and all the advancements
20:56
they're moving faster and faster and faster
20:58
so there is a lot of reason to have hope
21:00
yeah definitely
21:02
most definitely
21:04
it's a good time to be diagnosed
21:06
if you have to be diagnosed
21:08
not that you want to but
21:09
not that you want to but if you are
21:11
now is a lot better than 15 years ago
21:15
for sure alright
21:17
anything else you'd like to add in this episode
21:19
no I'm good
21:21
I think that's it just go live a good life
21:24
all right everyone
21:25
take care have a wonderful week
21:27
and we will see you all next time