Latest / The Eye Believe Podcast / My 15 Years | Episode 4: Ocular Melanoma Misconceptions & Early Advocacy

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My 15 Years | Episode 4: Ocular Melanoma Misconceptions & Early Advocacy · The Eye Believe Podcast

0:05
hey everyone welcome back
0:06
to melody's fifteen year journey with ocular melanoma
0:09
today we are gonna talk about
0:11
some misconceptions with ocular melanoma
0:13
how rare it is and what advocacy in those early days
0:17
looked like for melody welcome back
0:19
hey melody hey
0:22
alright so let's jump into it
0:24
first let's start with misconceptions
0:25
what kind of misconceptions
0:27
did you find in the beginning
0:29
well the biggest misconception
0:31
is that a diagnosis of ocular melanoma
0:34
does not mean you're going to die right away
0:36
that's the biggest misconception
0:39
people think oh my god
0:39
i'm diagnosed i'm gonna die
0:41
and that's not true
0:42
the other misconceptions
0:44
are that you're gonna lose your eyesight
0:45
not everybody loses their eyesight
0:47
some people do just fine
0:49
and they don't have any problems at all
0:50
they still see
0:51
the same as they've seen their whole life
0:54
the other misconceptions
0:55
is that you don't have any choices
0:58
you do you can discuss with your physician uh
1:02
choices that that might work for you
1:04
right now it's a lot different landscape
1:08
than when i was diagnosed
1:09
when i was diagnosed we had
1:11
this is your treatment this is what you get
1:13
now there's clinical trials
1:15
if you qualify there's um other
1:18
there's other treatment options
1:20
besides the plaque brachy therapy
1:22
that can be explored so
1:24
i think those are the kind of
1:25
the misconceptions that most people have
1:28
yeah i mean
1:29
you've seen a lot of progress in the last fifteen years
1:31
right oh yeah
1:32
i mean fifteen years
1:34
it's been amazing when i was diagnosed
1:35
it was all bad news and it was
1:37
this is what you do and go home
1:39
and you'll be lucky if you make it out of this alive
1:42
you know we're really sorry
1:44
yeah and sometimes they don't even say they're sorry
1:46
sometimes they just are well
1:49
yes
1:50
and i think when you google it
1:52
you know everyone says
1:52
don't google it that's part of the reason
1:55
is because
1:55
a lot of outdated information comes up in google
1:58
a lot of outdated information
2:00
and there's also i think
2:02
way back in the day um
2:04
that people that were diagnosed ten years beyond back
2:09
they really did not have good statistics
2:13
this cancer is so rare
2:14
there's not really great information out there
2:17
so you have researchers getting almost
2:21
information in a silo maybe
2:23
so there wasn't a way
2:26
that you could look at a whole community
2:28
across the united states or the world
2:31
they were looking at patients in their centers
2:35
or some neighboring centers
2:36
some people that they worked with
2:38
so they it wasn't like it is now
2:40
where information is easily accessible
2:43
and we can talk easily um
2:45
i mean you figure back in two thousand
2:47
ten eleven
2:48
i don't even think we had cameras on our cell phones
2:51
then something is telling me we don't
2:53
because i don't have any selfies of me from back then
2:57
i think i still had a camera
2:59
so we we did have cameras on our cell phones
3:02
but they were garbage and no one used them
3:04
because i remember yes
3:06
i remember in like two thousand and one ish
3:11
thinking why in the world is this camera on my phone
3:15
it does absolutely nothing
3:17
like you're just taking up phone space
3:18
like this is the dumbest thing ever
3:20
little did i know
3:21
it would soon become an integral part of our society
3:25
but i remember thinking it was quite stupid
3:28
well i was looking back at for photos
3:30
and there's not one photo of me
3:32
and i'm not a big selfie person anyway
3:34
but i would i have taken them
3:36
and i've also taken group pictures
3:38
but all of the pictures that i have
3:40
are from a digital camera
3:41
not from a phone so
3:43
so i mean
3:44
when you really think back fifteen years ago
3:48
there's a lot of things that have changed since then
3:50
information is is just
3:52
was not out there google
3:54
we had google
3:55
but google only knew what it could search for
3:59
and it was searching for a lot of journals
4:01
that a lot of people were publishing
4:02
that were bad news and a lot of the
4:05
a lot of the ophthalmologist even gave you bad news
4:10
you know they
4:10
they just didn't have really good
4:12
success stories to follow up on
4:15
so when you would google you would get oh
4:18
bad news you know
4:19
i remember looking at um
4:21
a website for ocular melanoma foundation that
4:24
that was the go to then
4:27
and it said
4:28
fifty percent of the people with ocular melanoma
4:30
are gonna die
4:31
and that was like
4:34
oh my god
4:35
i'm one of those fifty percent
4:37
i'm gonna die and
4:39
and it puts a it puts a heavy burden
4:41
we talked about that a couple episodes ago
4:43
about the burden of that and um
4:46
but that's a big misconception
4:47
because look at me
4:48
they told me oh
4:50
you know i went from having three to six months to live
4:53
two to five years to live
4:55
and here i am fifteen years later
4:57
so that's the biggest misconception i'm gonna say
4:59
is that they don't always know
5:01
definitely can you think of any other ones
5:04
other than a loss of sight
5:06
not everybody is gonna lose their sight
5:08
so
5:09
the treatments are not as difficult
5:11
as a lot of people think they are
5:12
the treatments are easy to get through
5:16
i've had numerous medical procedures and surgeries
5:19
and that one was probably the easiest one
5:22
which one the plaque
5:24
the plaque radiation
5:24
yeah by far
5:26
yeah it's a little annoying
5:28
it's a little bit of a a nuisance
5:30
but it's it's kind of a
5:32
you know it lingers
5:33
but it's kind of done and over and then you're off
5:36
it's not like um
5:37
having a big
5:37
major surgery that you have to recover from
5:40
okay perfect
5:41
let's talk about how rare it is
5:44
it's very rare it's considered a rare cancer
5:46
um the government has made it a rare cancer
5:49
so it does qualify for special funding
5:51
for special research projects
5:53
and for a fast track for pharmaceutical approval
5:56
we're up to three thousand a year
5:58
is kind of the estimate they're giving now
6:00
but that doesn't mean that they're
6:01
the incidents are increasing
6:03
it just means population's increasing
6:05
so it is very rare
6:07
in the rare space
6:09
of three thousand people a year
6:11
you get into
6:12
parts of that population that are even more rare
6:15
um this can happen to anybody
6:17
that is also a misconception
6:18
i guess we should have covered that before
6:20
it is a misconception that it only happens to
6:23
to caucasians
6:24
and it only happens to people with blue eyes though
6:26
that's a big misconception
6:27
and i should have put that over there
6:29
sorry about that that's ok we talk about it now yeah
6:32
it doesn't matter what color hair you have
6:34
it doesn't matter what color eyes you have
6:35
it doesn't matter where you're from
6:37
um people of all ethnicities can get ocular melanoma
6:41
they are just more rare
6:43
children can get it they're just more rare
6:46
so there's a lot of rare in the community
6:49
so there's the like i'm not rare in the community
6:52
i'm normal i'm
6:53
you know light skinned
6:54
light eyed light haired
6:57
i'm the probably the majority
6:59
but there's people with brown eyes
7:00
green eyes dark skin
7:02
there's you know
7:03
dark hair
7:04
in in the rare community of ocular melanoma
7:06
there are other people that are
7:07
that are more rare conjunctival is very rare
7:10
when you look at three thousand people a year
7:13
in the united states that's not very many
7:16
seven thousand in a world
7:17
so our whole world seven thousand people in one year
7:20
that's not very many
7:21
compared to most other illnesses or cancers
7:25
yeah so
7:26
one of the things
7:27
that i hear a lot of people complain about
7:29
is the lack of funding
7:31
how does the funding play into it
7:33
cause you said that you get special rare funding
7:36
how does that all work together
7:39
well it used to work differently than it works today
7:41
um the nih um
7:43
the government used to give funding to different
7:45
different um
7:47
government government entities
7:49
and the government entities
7:50
would then fund research for melanoma
7:52
and rare melanomas
7:53
the government has cut back on funding
7:56
so now we're looking at
7:58
it's gonna be even harder to get funding for research
8:01
uh there are private grants
8:03
through patients they give
8:05
they give money for research
8:06
we also have families that will give larger grants
8:10
but mostly now it we're looking towards the community
8:15
for funding for research
8:16
because the government is pulling back a lot of that
8:19
yeah it's unfortunate
8:21
it is unfortunate because it's not just ocular melanoma
8:23
there's a lot of rare diseases
8:25
that need help with funding
8:26
because when you have a rare population
8:28
the patients can't afford to push the research along
8:33
you know
8:34
when you're dealing with your own your own illness
8:36
and your own financial issues at home
8:39
to be able to have to
8:40
then to support the research side of it
8:42
not everybody has that ability to do that
8:45
yeah so since it's february and it's rare disease month
8:50
uh
8:50
do you want to talk a little bit about what hill day is
8:53
in regards to this sure
8:56
so hill day is important
8:57
because we're gonna go to legislators and say
9:00
we need you to help us with research funding
9:04
because it's been pulled back
9:05
and now we're all these rare diseases
9:09
the rare community is going to suffer
9:11
so by reaching out to your legislature
9:15
both at home and in dc
9:18
and ask them to fund research
9:21
to bring the funding back is extremely important
9:24
because
9:24
that's where most of the funding was coming from
9:27
and losing the government funding portion of it
9:30
really is putting a
9:32
a detriment to advancing our possibility for a cure
9:37
you know we have
9:38
there's so much that works
9:39
into getting a cure to the market
9:42
that we can go over that a little another time
9:45
but there's just so much that goes into that
9:46
it's very expensive
9:47
we did a couple of of um
9:49
sessions at the i believe
9:50
survivorship meetings
9:52
where we had the pharmaceutical companies talk
9:54
about how much money it takes
9:56
to get a drug from research to market
10:00
and it's millions and millions of dollars and
10:03
you know
10:03
there's millions of dollars going into research
10:05
right now that it doesn't
10:07
isn't even getting the drug to market
10:08
it's just trying to figure out how
10:10
what the mechanisms are because it's such a rare cancer
10:13
it hasn't really been studied
10:15
and you know
10:16
up until
10:17
um i don't know
10:18
probably the two thousands
10:20
as i think
10:20
maybe when things really started moving along
10:22
and it just keeps moving at a faster rate now
10:25
but it all takes funding
10:26
and we need the government to help us with that funding
10:30
so by reaching out to your state
10:33
local and federal legislators um
10:36
and asking them to fund it
10:38
tell your story
10:39
explain to them why this is so important
10:41
and that you know
10:42
so they can see you as a person
10:44
not just as a as a dollar sign on a balance sheet
10:48
right and so we have put out when we're gonna be there
10:52
if people wanna come with us
10:53
you're more than welcome to join us
10:55
and you still go to see your own representative
10:58
so we kind of all meet together
11:00
you find out where you're going
11:02
you go to their office and you talk to
11:04
it's usually not the representative
11:06
it's usually their um
11:08
staffers which is actually better
11:10
because you're talking to the
11:12
the health staffer
11:13
or someone who's dealing more with things
11:16
that they're gonna understand what you're talking about
11:18
and then they report back
11:19
and they have their ear so it
11:21
it's great but if someone's virtual
11:24
they can send letters in
11:25
and they can also visit the representatives
11:27
in their own state
11:28
cause they have an office in their own state
11:29
what else does the virtual entail
11:31
if somebody was gonna do virtual
11:33
they would call email
11:36
fax however
11:37
a letter to them make a phone call
11:39
and you can schedule an appointment to
11:41
to talk to the local staff in your city
11:45
we talk about hill day and federal government
11:47
but don't forget
11:48
you have state and local government as well
11:50
that is good because a lot of the
11:52
the local government pushes the state government
11:55
which then pushes the federal government
11:57
so don't forget don't just use one little piece
11:59
but being active at home is important
12:03
so it doesn't take a lot to do it virtually
12:06
you're basically just gonna send an email
12:08
make a phone call write a letter
12:10
send a letter that we're going to provide to you
12:14
that you can add your name to it
12:16
and then you can send it on
12:17
so we will provide that letter for you
12:20
and then follow up with them
12:22
just keep following up to
12:24
you know
12:24
let them know that you're here and you're active
12:26
and you would like to help move this forward
12:29
yeah and it was a really cool experience to be in dc
12:33
and our staffer one of them
12:35
i thought it was very cool because she said oh
12:37
i have a rare disease myself
12:39
like i understand and i'm already fighting for this
12:41
and so it was very cool because
12:43
and that's what i mean by
12:44
they're actually the person you want to talk to
12:46
not necessarily the representative
12:48
because she got to hear everyone else's stories
12:50
which just made her argument stronger
12:53
that she was already gonna take to him
12:54
we just fueled her and one of the ladies with us
12:58
her rare disease was the same one the staffer had
13:00
which was crazy oh wow
13:01
yeah and i don't remember what it was
13:03
cause i'd never heard of it
13:04
but uh huh
13:05
it was very cool well the
13:07
the one thing that's really great about being in dc
13:10
with with our group
13:11
is that we do it with Every Life Foundation
13:13
so you have you're gonna go with a group of people
13:15
that have all kinds of rare diseases
13:18
but you kind of develop this little friendship
13:20
you know then you kind of keep in touch
13:22
and you see everybody year after year and
13:24
and the staffers start to recognize you
13:26
you know like i
13:27
i was amazed when i went in last year
13:30
Thom Tillis who was our um senator
13:33
they recognize me and call me by my name
13:36
and i'm like it
13:37
how did you know that because they don't
13:39
i don't know that they know who's coming
13:42
but i was like wow
13:43
that it was very impressive to me that they care
13:46
you think they don't care
13:47
but they do and they recognize you
13:49
and there was a lot of us that were repeat people
13:51
that they recognized us they're like hey
13:54
glad you're back and
13:55
and so you develop a rapport by going in person
13:59
or by visiting the local office staff you
14:02
you can develop a rapport
14:03
and then it's not like you're just bugging them
14:06
because you're not they
14:08
they really are excited to have you there
14:10
and i think that's one of the things we all need to
14:13
move away from is the preconceived notion
14:15
that we're going to bother somebody
14:16
because they want to hear from you
14:18
they really they really do
14:20
yeah absolutely
14:21
and they're so welcoming we went into
14:24
so i'm in virginia
14:25
so we went into our representative's office
14:28
and they had packages of virginia peanuts and um
14:32
payday bars cause peanuts are big out here
14:34
and like all these little treats
14:36
and it was it was welcoming
14:38
and they were like do you want a water bottle
14:40
and
14:41
yeah it was a very cool experience
14:43
they do want you there but you know the
14:45
the biggest thing with rare disease
14:49
having a rare disease is not
14:52
accepting your fate
14:55
because look at all the diseases that have been cured
14:59
and there's a lot of of diseases still yet to be cured
15:03
and i know ocular melanoma will be cured one day
15:06
because i've watched it grow
15:08
and i've watched all these great things
15:10
when i was diagnosed we didn't have any treatments
15:13
there were some trials and that was it
15:16
now we've got two approved treatments
15:18
and that are fda approved
15:19
that's huge
15:20
so you know
15:20
if we all band together and push that engine forward
15:24
through representation through advocacy
15:27
through funding research
15:29
we'll get there but we can't accept the fact that oh
15:33
it's rare and oh
15:34
this is what i have and oh
15:35
i'm just gonna accept my lot in life
15:37
and this is what i have i'm just gonna be done
15:40
yeah because if we all did that
15:42
we would never get where we are today
15:43
right and something else to be encouraged by
15:46
the speed that technology moves is constantly doubling
15:51
so you know
15:52
it took that long to get to where we are
15:54
but where are we gonna be in only five more years
15:56
and in ten and in twenty like it's
15:59
it's gonna move a lot faster as we go
16:01
which is very exciting
16:03
the faster that computers work the
16:05
the faster we're gonna move forward
16:07
and computers they
16:08
they just keep being faster faster
16:11
faster so
16:12
you know and one of the things too
16:13
about hill day and advocating
16:15
is you don't have to be a patient to do that
16:17
you can be a family member
16:18
because sometimes the patient can't be the person
16:21
who advocates for themselves
16:22
sometimes the family member needs to do that
16:25
um it doesn't have to be a caretaker
16:27
it can be anybody but it could be a friend
16:29
you know somebody who's passionate about it
16:32
i do understand that
16:33
especially if you're newly diagnosed
16:34
it's really hard to be passionate about anything
16:37
i know that when i was newly diagnosed
16:39
i didn't know how to be an advocate for myself
16:41
i didn't even know how to ask my doctor a question
16:44
i did not know how to ask my doctor
16:45
will my eye deflate and fall out
16:48
hahaha
16:49
right so you don't know
16:51
you don't know what you don't know
16:53
um so your newly diagnosed people
16:56
sometimes our emotions and our
16:58
and our mental health part of it
17:01
of the diagnosis isn't where we need to be
17:04
to be able to do it for ourselves at that moment
17:06
but you'll get there so
17:09
if you aren't at that spot right now
17:11
where you feel that you can do it
17:12
that you have what it takes to do it
17:14
but you have a friend
17:15
or a family member who is willing to do it for you
17:18
please let them please ask them to
17:21
please encourage them to cause
17:23
it doesn't have to be a patient voice
17:25
it cause this
17:26
this is a disease that doesn't just affect one person
17:29
you know
17:29
it affects an entire family and extended family and
17:33
you know friends
17:34
it just
17:34
it radiates out
17:36
absolutely
17:37
so my next question was going to be
17:40
you've obviously become a very big advocate
17:43
you do a lot with advocacy
17:45
but what did it look like in those early days
17:47
which you kind of just answered
17:48
but do you want to elaborate on that anymore
17:51
yeah it
17:52
i didn't know any i didn't know i
17:54
i was raised in an era where you went to the doctor
17:58
and you did what the doctor said
18:00
and you did not question you just did what they said
18:02
you took the medicine they said you
18:05
you were a good patient and my mom used to say
18:08
you mind your Ps and Qs
18:09
and you just did what they did
18:11
that's not always a good thing
18:13
i'm not saying you should go challenge and be rude
18:16
but i think
18:17
our doctors don't always know what to say to us
18:21
because we're not asking the questions
18:22
so they think we understand
18:25
but if we don't understand and we're not telling them
18:27
we don't understand
18:28
or if we're not telling them we need more help
18:31
or we need more information
18:33
how are they gonna know if we don't tell them
18:36
so i learned that
18:38
i was doing myself a very big disservice
18:43
by not using my voice
18:44
i had to learn how to do that
18:46
cause i really was not raised like that
18:48
i was raised to be very quiet
18:49
don't rock the boat you know
18:51
don't say anything
18:53
swallow your emotions swallow your fears
18:56
soldier on
18:57
i'm at the tail end of the boomer
18:58
i'm a i was born in sixty two
19:00
so i'm on the tail end of that boomer mentality and
19:02
and it it's a tough mentality because it was
19:05
you know you have to be strong
19:07
you have to have that and that's
19:10
i also had a mother who was very much a
19:13
a woman's liber and
19:15
you know you
19:15
it was strong show your strength
19:17
don't don't cry
19:18
and so when when you're first diagnosed
19:22
it's really hard
19:23
because you have all that stuff in your head
19:25
you know it's not just the cartoon that you saw
19:28
it's the voices in your head
19:30
that just keep talking to you
19:34
so the first couple of times when you speak up and say
19:37
but what about
19:39
it's hard i remember going
19:42
i had bad bad double vision after i was
19:45
had my plaque out it was really bad
19:47
and it went on for a while
19:49
and they were wanted to do Avastin shots in my eye
19:53
to try to help stop some of the retinopathy
19:55
that was causing the double vision
19:57
and
19:58
i did not know how to ask any questions about the shot
20:01
and the doctor gave me a shot
20:03
sent me on my way and i
20:05
i went and got in the car
20:06
and my eye was burning and i
20:08
i was really having a hard time
20:09
i was only able to drive a block before i had to turn
20:12
pull over and go sit for half an hour
20:14
while everything kind of calm down
20:16
'cause i couldn't see to drive
20:17
and the doctor never said
20:20
do you have somebody with you
20:21
or are you okay to go
20:23
they just poof out the door
20:24
but i also never said
20:27
hey i don't know that i'm okay to go right now
20:30
i'm having a hard time
20:31
and i think that was kind of the turning point for me
20:35
was how do you know if something
20:39
you know when to speak up
20:40
but you should always speak up
20:41
if you feel that something isn't right
20:44
i went to a different doctor
20:46
i was i was between california and north carolina
20:49
so
20:50
the doctor that did the Avastin shot was in california
20:52
i went back to my doctor in north carolina
20:54
that did my plaque and he said
20:56
why are you doing Avastin shots
20:57
it's not gonna make any difference
20:59
you're you're gonna lose your vision anyway
21:01
i'm like what i
21:02
it was shocking to me
21:04
and i i left that office that day feeling like
21:07
this is just not right
21:09
how do i have such two different stories
21:11
one hopeful one hopeless
21:13
i need to figure this out for myself
21:15
and that was the time when i really
21:18
decided that i needed to be an advocate
21:20
and i was two years into my diagnosis
21:23
so don't feel like if you
21:25
you have to advocate right away
21:27
but please try to find your voice as early as possible
21:31
if something does not feel right
21:32
you need to ask you need to speak up
21:35
if you don't understand something
21:37
it's okay to say to your doctor
21:38
i don't understand i need you to explain this to me
21:42
you have those rights
21:43
those are a patient bill of rights
21:45
sometimes advocacy is just asking a question
21:48
and sometimes it's out there flying the flag
21:50
and trying to get everybody to get on board
21:53
and get more attention behind it
21:56
and then there's all these little spots in the middle
21:58
for advocacy so you
22:00
when you advocate for yourself
22:01
it's it starts small
22:03
and then it grows and it grows and it grows
22:05
so um
22:07
in the early days i did not know how um
22:09
but i learned and now i'm very vocal
22:13
let's also talk about second opinions
22:15
because i feel like that goes right in hand with this
22:19
if someone's thinking ooh
22:20
will it offend my doctor am i cheating on my doctor
22:23
like what would you say to that
22:26
if you have a voice in your head that says
22:28
second opinion go get a second opinion
22:30
doesn't matter what your doctor says
22:31
if your doctor has an ego issue
22:34
and will fire you because you got a second opinion
22:37
then you're obviously not with the right doctor
22:39
because most of our ocular oncologists
22:42
will encourage a second opinion
22:43
but remember opinions are opinions
22:46
and so if you go see somebody about plaque
22:48
and you go see somebody about proton beam
22:51
they're both gonna advocate for what they do
22:53
so you have to try to go through the weeds
22:56
and figure out what's best for you
22:59
because proton beam might not be plaque
23:01
might not be but you need to
23:02
you need to feel good with your treatment options
23:06
if a doctor says i you know
23:08
you need avastin shots every three months
23:10
or every six weeks or every two weeks
23:13
and you don't feel comfortable with that
23:16
talk to your doctor first say
23:18
you know to your doctor and say
23:20
these are my fears
23:21
if you still feel you need a second opinion
23:23
go get a second opinion
23:25
because you're always gonna wonder
23:27
i wonder what would have happened if i had
23:29
if i had gotten a second opinion
23:31
so it's better just to squash it
23:33
to go get a second opinion
23:34
more than likely they will agree
23:36
sometimes they don't and if they don't
23:38
then you sort out with with your gut on how you feel
23:42
but if you ever have a doubt in your head
23:45
that you need a second opinion
23:47
go and get one 'cause otherwise it'll just gnaw at you
23:50
and you'll be mad at yourself for not doing that
23:54
yeah and like
23:55
in your situation you had two doctors
23:58
giving you
23:58
completely different prognosis and treatment
24:02
so it's it's worth exploring
24:04
and you know the
24:05
the here's the funny thing is
24:06
i did not keep going with the doctor
24:08
with the Avastin shots
24:09
i went with the doctor that treated me
24:11
that says you're gonna lose your vision anyway
24:13
so why are you doing this
24:15
it's uncomfortable and
24:16
and it's not gonna get you anywhere
24:18
and he was correct and did not get me anywhere
24:20
and i use my logical mind at that moment
24:22
i did not use my my fear
24:25
i didn't use my um
24:27
imagination mind it's like
24:29
well
24:30
for me common sense and my rational mind said
24:34
if i'm gonna lose my vision
24:35
i'd rather lose it now than have it linger
24:37
you know the lingering
24:38
the going in every four to six weeks to get a shot
24:42
shots in your eyes are not always bad
24:44
but they were horrible for me
24:46
for me it did not work
24:47
and i did not want that
24:48
and i did not like having something stuck in my eye
24:51
and so there was a lot of
24:54
the fear did enter into a little bit of my decision
24:57
but i thought
24:59
why am i prolonging something that's gonna happen
25:01
i'd rather just have it resolved and be done with it
25:04
and that's why i chose not to have a vasectomy
25:06
and i just lost my vision and
25:08
and i was okay with it
25:10
'cause it was gonna happen eventually
25:12
yeah that makes sense
25:13
and you do you feel like you regained a little control
25:16
in that moment
25:17
i did feel like i had control
25:18
i feel like i made the decision
25:20
i had control and i knew what was ahead of me
25:23
i knew okay
25:24
vision's gonna go anyway
25:25
because he told me when he put the plaque on
25:28
that i was gonna lose my vision
25:29
because it covered the macula
25:31
so it was gonna happen the
25:33
the issue i was having from the double vision
25:35
was twofold one of it was because i had my muscles cut
25:38
right and they weren't quite put back together right
25:40
but the other one was that there was some swelling
25:42
and some
25:43
and some fluid from the radiation retinopathy in my eye
25:47
that that was causing
25:49
kind of aggravating it
25:50
but i just wore an eye patch when i had double vision
25:53
and eventually my vision did go
25:56
and i learned early on how to live with it
25:59
because the lingering was difficult
26:01
have learning
26:02
trying to figure out how to see around something
26:04
or trying to constantly
26:05
have to go and get your prisons fixed
26:07
because your double vision just kept getting wonky
26:10
and even with a prism to for the double vision
26:13
i still wore an eye patch
26:16
yeah especially when i was driving
26:19
mm hmm
26:19
are there any things that you found helpful
26:22
after your plaque like
26:25
what would you recommend
26:26
if someone's getting ready to have that
26:27
like did you like a hot compress or a cold compress
26:30
or was there anything like
26:32
after you got it out and you went back into the world
26:35
was there anything that really helped you kind of
26:38
feel better yeah
26:39
cold for me was soothing um
26:41
i used a bag of frozen peas
26:43
which is why we developed a little cool pack
26:45
that is in the new patient
26:46
packets we send out you can put in the freezer
26:48
you can put in the refrigerator
26:49
you can put in the microwave whatever
26:50
whatever works um
26:52
because some people warm is soothing
26:53
and some people cold is soothing
26:55
but for me cold
26:56
so i would put a bag of peas on my
26:58
on my eye and that was
27:00
that was very helpful
27:01
i didn't do well in bright light
27:04
so sunglasses are helpful for some
27:07
sunglasses don't work for me
27:09
because i have a problem seeing in the dark
27:10
and when i put sunglasses on
27:12
i feel like i'm in the dark and i feel like i can't see
27:14
and i get anxious
27:15
and so i would just go around with an eye patch on
27:18
or i would just close my eye
27:19
um so i walked around a lot like popeye
27:22
i had one eye open and one eye closed
27:23
and it worked for me um
27:25
but if i was gonna go in
27:27
anywhere where there was a bright light
27:29
i would close my eye ahead of time
27:31
and then
27:31
once i got kind of more used to the bright light
27:34
with my good eye then i would slowly open my bad eye
27:37
and and that
27:37
that was kind of something that worked for me
27:40
for light
27:41
the biggest thing was giving my eye rest
27:43
cause your eye has gone through a lot
27:45
your eye is going to just close automatically sometimes
27:48
and you can't open it it's tired
27:50
it's done it'll just close
27:52
and when it does just let it close
27:54
um resting your eyes
27:55
don't do too a lot of computer work in the beginning
27:57
because computer work is really eye straining
28:00
reading can be eye straining
28:02
so when you're doing something like that
28:04
maybe put a patch on uh
28:06
close your eye um
28:07
and give that eye rest
28:09
that was kind of the biggest thing for me
28:10
was to remember to rest your eye
28:12
and if it is bothering you
28:14
cool or warm don't use hot
28:17
i've been told you shouldn't use hot hot
28:19
and you also shouldn't really use freezing
28:21
but just cool and warm is sometimes soothing
28:24
but a frozen bag of peas even though it's frozen
28:27
it wasn't like i was sticking an ice cube on my eye
28:29
it was kind of something i could move around
28:32
and it was very soothing for me
28:34
they thaw fast
28:36
they do thaw fast
28:37
they do
28:37
and i also like peas for other body parts as well
28:40
because they're moldable
28:42
yes they are
28:43
well in those little boo boo buddies
28:44
that's what our ice pack looks like
28:45
our our little
28:46
little cool pack in our new patient pack
28:48
it's like a boo boo buddy
28:49
mm hmm and
28:50
you know those work really well too
28:51
because they kind of fit the eye
28:53
and they don't you know
28:54
don't have something over your whole head
28:56
yeah um
28:56
i tried ice cubes in a towel
28:58
that didn't work but
28:59
so peas worked really well
29:01
or a boo boo buddy um
29:03
cool pack um
29:04
was helpful
29:05
other than you know
29:06
rest you have to remember that
29:08
you just went through a real traumatic thing
29:10
you have to have a lot of rest
29:11
and that's hard for people nowadays
29:14
it is hard don't jump in
29:16
you know
29:17
this is something that i see a lot
29:19
and this is part of the advocating for yourself
29:22
it it's kind of a two fold
29:23
take the time off work
29:25
if your work will give you six weeks for a surgery
29:28
take six weeks
29:30
just cause you can go back to work in two
29:32
doesn't mean you should
29:33
and that's one of the things that
29:35
that i have adopted very early on
29:36
just cause i can doesn't mean i should
29:39
because i can push my body a lot
29:42
but it doesn't mean i should
29:44
so give your eye time give your body time
29:47
you've gone through two surgeries
29:49
you've gone through two anesthesia processes
29:52
you've got radiation in your eye
29:54
your body is trying to heal
29:56
let it heal give yourself time
29:58
even if you feel fine give yourself time
30:01
give your eye time
30:03
don't jump right into spreadsheets and computer work
30:05
and oh
30:06
i gotta do all this stuff
30:07
take whatever leave your employer will give you
30:11
and that you can afford
30:13
and also don't discount the emotional toll
30:15
because that affects your physical as well
30:19
it does that's a big trauma
30:21
yeah and you need that time
30:23
you need time just to be calm
30:25
be still rest and recover
30:28
it's like if you have a broken leg
30:30
you're not gonna go out and run a marathon
30:32
you know you have to have a cast
30:34
and it has to has to heal
30:36
and they take the cast off
30:37
and then you have to be very careful how you walk
30:39
and you know
30:39
sometimes you're in a walking cast for a while
30:41
you know i mean
30:41
it's like there's baby steps
30:43
but unfortunately
30:44
they don't really teach you baby steps
30:46
with ocular melanoma okay
30:47
your plaque's off like me
30:48
what did i do as soon as my plaque was off
30:50
i went out to lunch um
30:52
'cause i wanted to be normal
30:54
i'm not saying that that's the right thing to do
30:56
but i still did give myself time
30:58
i did not go to work
30:59
back to work for two months because i couldn't
31:01
i was not physically capable of it
31:04
mentally i probably wasn't even capable of it
31:07
my eye was still causing too many problems
31:09
i couldn't drive right away
31:10
you know there were
31:11
there's all these things and
31:12
and so being calm and giving yourself time to heal
31:16
is advocating for yourself
31:17
so do that
31:18
i agree i think that's super important
31:21
alright everyone
31:22
we are gonna end it here
31:23
but we will see you for episode five
31:25
so stay tuned and we hope you have a wonderful week