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My 15 Years | Episode 1: My Diagnosis · The Eye Believe Podcast

0:05
hey everyone
0:06
welcome to Melody's 15 year Anniversary special series
0:11
we are calling this My 15 Years
0:13
so thanks for tuning in
0:14
we're gonna do two episodes every month
0:16
so you're gonna get 24 all together
0:18
and we're gonna go through her journey of 15 years
0:21
so welcome thank you
0:24
excited to share my story from the beginning
0:27
alright so let's start at the very
0:30
very beginning we're gonna go all the way back
0:32
how many years ago are we going back
0:35
15 years um
0:37
15 years December 21st
0:40
I was diagnosed with ocular melanoma
0:42
okay and what year was that
0:44
so I don't have to do math 2010 2010
0:47
oh yeah
0:47
from 2025 never mind
0:48
that's not a hard math I could have done that
0:50
that's okay
0:52
tell us a little bit about yourself and your life
0:54
before diagnosis where were you
0:56
what were you doing
0:58
well before I was diagnosed
0:59
I was living in North Carolina
1:01
I was married I had a landscaping company
1:04
that was very successful at the time
1:06
and doing doing well
1:09
um
1:10
I we had moved to North Carolina in 2007
1:14
so from California
1:16
so we were just kind of getting
1:18
getting going in the swing of things
1:20
with the landscaping company
1:21
and kind of our our new life in North Carolina
1:24
and before that I lived in California
1:27
and I had a background in sales and marketing
1:29
and design
1:30
so I had a couple landscaping companies that um
1:35
throughout my life
1:36
and so it seemed like a good fit
1:38
when we moved to North Carolina
1:40
and before all of this began
1:42
had you ever heard of ocular melanoma
1:45
never in my life have I ever heard of it
1:48
I knew what melanoma was and I knew it wasn't good
1:51
um but no
1:53
I didn't even know
1:54
that you could get cancer in your eye
1:55
it was a total shock to me
1:57
do you remember the first moment you realized
2:00
something might be wrong with your vision
2:03
you know honestly
2:04
I didn't even realize
2:05
there was something really wrong with my vision
2:08
I had a little shadow in the left corner um
2:12
upper corner and I used to ask people
2:14
do you ever see this weird little thing up there
2:16
and you're like no
2:17
but I have lots of floaters
2:18
I'm real nearsighted
2:19
I got a lot of garbage that floats around in my eyes
2:21
and just always have
2:23
I had taken my mom to
2:26
um Duke Eye for a retinal vein occlusion
2:29
and they handed her one of the little Amsler grids that
2:32
you know
2:33
little grid that you're supposed to look at every day
2:35
and if you see wavy lines
2:37
you're supposed to let somebody know
2:38
so they handed it to me and I looked at it
2:40
it's like wow
2:41
in my left eye the lines are wavy
2:43
and there's like oh
2:44
you're probably fine it's like
2:45
oh okay
2:46
so I
2:48
hahaha
2:49
wait what
2:50
hahaha yeah
2:52
hey you know
2:52
I thought well
2:53
maybe I'm developing
2:53
a little macular degeneration or something
2:55
but you know
2:56
it's not anything big so I
2:58
other than that my vision was fine
2:59
took the magnet home put it on the refrigerator
3:01
never looked at it again
3:04
isn't it funny
3:05
how you don't see what's on your refrigerator
3:07
I do that too
3:07
yeah I know
3:08
I never even looked at never
3:09
well I never even gave it to my mom to look at again
3:11
either so yeah
3:14
so tell us the story of what led you to the doctor
3:18
well we had a landscaping company
3:20
and I was moving a very large ball and burlap tree
3:23
with a guy an employee
3:25
and we were going down the ramp of a trailer with this
3:28
and um
3:29
with this dolly and I had one side and he had the other
3:34
well he slipped and let go of his side
3:37
and when he did
3:39
the tree spun around and knocked me in the face
3:44
and knocked my glasses to the ground
3:45
and proceeded to run over them a few times
3:49
so they were very very smooshed and not usable
3:53
um without glasses
3:56
I'm very very nearsighted
3:57
I can't see very far like
3:59
I can see a few feet in front of me clearly
4:02
and after that it's just blurry
4:05
so we got and got things together
4:07
and I decided I needed to go to Lenscrafters
4:11
so I could get glasses in an hour
4:13
because I needed to be able to see without glasses
4:16
I'm just blind basically
4:18
so I got in the car
4:21
went to Lenscrafters for glasses in an hour
4:23
and the optometrist said
4:26
have you noticed anything weird
4:28
I said well
4:28
I kind of have this weird shadow thing
4:30
but nothing major
4:32
cause it didn't seem to be anything major
4:34
I could still see
4:36
so he looked he dilated
4:39
he dilated my eyes and he took some pictures
4:42
and then he looked and he looked and he looked
4:44
and he had me looking this way and that way
4:46
and almost upside down and turning all around
4:48
and I'm thinking
4:49
no one's ever looked in my eye this long before ever
4:52
this is weird so I started getting a little concerned
4:56
and and I just did what he said and waited
5:00
and he turned around turned his back towards me
5:02
and wrote something in my chart and said
5:05
you have ocular melanoma do you have anybody with you
5:09
and I said no
5:11
what's that well um
5:14
I think you should call your husband
5:15
and have your husband come down
5:16
and I'll explain it all to him
5:18
um in the meantime
5:19
here's a prescription go out and
5:22
and look and and look for some glasses
5:25
so I walked out into the store of Lens Crafters
5:28
kind of in a stupor you know
5:30
just kind of like what the heck
5:31
what did he just say um
5:33
I had a step grandfather
5:36
who had passed from melanoma a few years ago
5:39
so I knew melanoma was bad
5:41
and I knew melanoma in my eye couldn't be good so right
5:47
right so I called my husband
5:48
he came down and it was the weirdest
5:51
most surreal thing I'm
5:53
I'm telling him on the phone
5:54
you need to come and I kind of cried because I
5:57
I was scared I didn't
5:58
I thought this is not good
6:01
so I walked back into the
6:03
into the optometrist spot
6:04
and they put me in a chair
6:06
and they took my husband back all by himself
6:08
what they did they just left me sitting there
6:11
and I'm like but I was
6:14
you do you know
6:14
when you're in one of those almost out of body type
6:17
it's like you can't really say anything
6:20
you can't really move you're like okay
6:22
but in your mind you're like
6:23
this isn't right but you just don't you
6:27
you don't have the ability to say no
6:29
I wanna go too
6:31
you just follow the instructions
6:32
because you're not like
6:34
really present maybe yeah
6:37
and a doctor's sort of like an authority figure
6:40
in a way you know
6:41
like you do what they tell you to do exactly
6:43
and I did exactly what he told me to do right
6:45
so um
6:46
my husband came out and said well
6:50
it's probably not good
6:51
they're gonna send you to a retinal specialist
6:53
they're making an appointment now
6:56
for us to be seen right away
6:59
so one caveat to this whole thing
7:02
is that I did not have health insurance
7:06
none because four years prior
7:09
I had been diagnosed with kidney cancer
7:12
took a leave of absence from my employer
7:15
and during my leave of absence
7:17
my employer was sold to another company
7:21
so my Cobra policy I had on my leave of absence
7:26
was no longer a valid policy
7:27
which means I didn't have Cobra
7:30
which means I couldn't get insurance
7:34
um we looked at insurance a couple of times
7:36
it was about $2500 a month for a copay in 2010
7:40
with a rider against cancer
7:42
you could have no other cancers
7:44
they wouldn't cover it so I never got insurance
7:47
because who could afford that right
7:49
and that was twice our mortgage payment
7:51
so it just was not possible
7:54
so I had two things to worry about
7:56
I had to figure out go
7:57
getting figure out what ocular melanoma was
8:01
and then how am I gonna pay for this
8:02
because I know it's not gonna be cheap
8:05
you know um
8:06
paying $40 for the pictures at the optometrist
8:09
was kind of high um
8:11
and and this was all at Christmas
8:14
December 21st 2010
8:16
so it's a Christmas time
8:18
so it's there's all these things
8:19
that are going through your head
8:20
and I'm just like well
8:21
how are we gonna do this and how are we gonna do that
8:22
but wait
8:23
what's this and
8:24
it was just really hard
8:27
to make any coherent thoughts in my head
8:31
so we did
8:32
we went ahead and went to the retina specialist
8:35
and he offered us you know
8:38
a payment plan and he took some photos
8:40
and he said yeah
8:42
it's ocular melanoma and we don't treat it here
8:46
you have to go to one of the hospitals in Raleigh
8:50
and get treated but you don't have any insurance
8:53
and this is gonna cost you $25,000 and up
8:57
and we're like well
8:58
we don't have that kind of money
8:59
so now I have cancer in my eye
9:00
I have no insurance
9:01
I can't figure out how to pay for it right
9:03
um but I did get glasses so I could see well
9:08
that's something
9:10
I did get my glasses um and
9:15
it was it was just the weirdest um
9:17
it was the weirdest feeling
9:18
of somebody telling you
9:20
that you have cancer in your eye
9:21
and I remember going into the retina specialist
9:24
and they had a big chair
9:26
that kind of was like a dentist chair
9:27
and it was set up really high
9:29
and there was a big computer monitor on the wall
9:33
and the photo of my eye tumor was on the wall
9:37
and it looked huge
9:38
it looked like it took up more than half of my eye
9:41
which was very scary yeah
9:43
then they did an eye exam
9:46
and they said take off your glasses
9:47
cover your right eye what do you see
9:49
I couldn't see anything
9:51
it was white there were no
9:53
there were no letters they said okay
9:55
cover your left eye
9:56
and I could see them with my right eye
9:57
so then that was concerning
9:59
it's like why can't I see anything
10:01
because
10:01
I certainly thought I had vision in that eye before
10:05
but it I couldn't see anything on the chart at all
10:09
um looking backwards
10:11
my eye had been very sensitive to light
10:13
when I would be talking to a client outside
10:17
about their landscaping
10:19
I remember I would close my left eye a lot
10:21
because the sun was would just really make it ache
10:25
but it never never dawned on me that
10:27
I just thought I was light sensitive
10:28
I didn't think I had anything going on in my eye
10:31
so
10:33
um we gathered ourselves up and went home
10:37
and tried to figure out what we were gonna do
10:40
so our next step was going to um
10:43
university of North Carolina
10:46
that was um
10:47
one of the places that was recommended that we go to
10:49
the retinal specialist had gone to school there
10:51
so those were his instructor
10:53
so he highly recommended going there
10:55
so we went there we talked to them
10:57
we talked to
10:58
to them about exactly what it was they didn't know
11:01
they said well
11:02
you had kidney cancer this could be a metastasis
11:05
now we have to figure out oh
11:06
is this another primary you know
11:08
or is this a metastasis of something else
11:11
but it it kinda looks like ocular melanoma
11:14
but it's it kinda doesn't
11:16
so now we're even more concerned
11:19
we're like well
11:19
maybe it is maybe it's not
11:21
so they
11:22
they say go home and come back next week for testing
11:26
you know enjoy the holidays right
11:28
how are you gonna do that but go enjoy the holidays
11:31
so we went home and um
11:34
just kind of we were both just kind of numb and like
11:37
what the heck is this and so
11:39
uh the
11:40
the doctors at UNC did consult with Shields
11:43
and they did say yes
11:44
it is definitely an ocular melanoma
11:46
it had all the characteristics
11:48
it just wasn't showing up
11:49
highly orange pigmented in the photos
11:52
but my tumor measured 11 by 14 wide and 5 high
11:57
so I was on the large medium side
12:00
and it was it's way
12:03
way down here towards the back
12:05
so
12:05
that meant a surgery where they had to cut the muscle
12:07
slip the plaque in um
12:10
you know there was just all this
12:12
uncertainty of exactly how this was gonna happen
12:15
so during our break until the next week
12:19
to go have more testing done
12:20
we I called a friend of mine who sold insurance
12:23
and she said uh
12:25
North Carolina has an Affordable Care Act
12:29
pre enrollment that you will qualify for
12:33
so I was able to qualify the
12:35
we had to wait 15 days in order for it to be effective
12:38
which was fine so we I
12:41
I enrolled I was accepted
12:43
and my payment was like
12:45
$350 a month so I was
12:47
dodged a bullet there right
12:48
yeah
12:49
we talked to financial aid
12:51
at UNC they had a compassionate care program
12:54
that would cover things until this insurance kicked in
12:58
uh so luckily
12:59
most university hospitals have a compassionate care
13:03
where
13:03
they'll write off a good portion of the hospital Bill
13:06
but that doesn't include the doctor
13:08
and they still have you still have to pay the doctor
13:10
and all the side non hospital bills
13:13
which we figured out
13:14
we could figure out a way to do that
13:16
so um
13:18
we had Christmas and we started testing um
13:22
went back in had another eye test
13:24
they told me absolutely no
13:26
we are not gonna do a biopsy
13:28
they don't like biopsies
13:29
they wanted nothing to do with it
13:31
uh my oncologist from my kidney cancer pressed for one
13:34
but they still said no so we're still in this
13:38
what is this game
13:40
so they went ahead and did a
13:42
they scheduled me for scanning
13:44
so I did CT and MRI I did it
13:47
had a um
13:48
MRI of the brain and of the abdomen
13:50
CT of the lung
13:52
and
13:55
more bad news
13:57
so I get a call uh
14:00
you guys need to come in
14:01
we have your results of your scan
14:05
we go in we think oh
14:07
this can't be good because they're calling us
14:08
and they're not telling us on the phone
14:09
I'm fine right
14:11
he said you have metastatic cancer somewhere
14:14
we don't know where the primary is
14:15
we're thinking it's the eye
14:16
but you have lesions in your spleen and in your lungs
14:19
and you have enlarged lymph nodes in your chest
14:23
you have three to six months to live
14:26
I'm like how did we go from I was fine
14:30
to ocular melanoma to three to six months to live
14:33
how how did this all happen
14:36
I had had a cold in December
14:39
and I couldn't really figure out why
14:42
I was the only one in the family that ever got colds
14:44
in November December
14:45
January but nobody else in the family got them
14:48
I had it and I got so
14:50
you know I just said okay
14:51
I got a cold well
14:53
I was coughing and hacking through all of this stuff
14:55
and the doctor said once your cold is better
14:57
we're gonna do a biopsy on your lymph nodes
14:59
to find out what this is
15:01
well my cold didn't get better
15:02
so they decided
15:04
that they would go ahead and schedule me for a biopsy
15:06
well
15:06
biopsy of the lymph nodes of the chest is a big deal
15:09
and I didn't know that either
15:10
um talk about yeah
15:12
medical education
15:14
right so that I had to
15:15
I just sign papers to allow for a blood transfusion
15:18
I had to have my blood typed
15:19
I came back with some weird blood enzyme that's
15:22
that one of the the the um
15:25
the people that have this are people with HIV
15:27
so then I had to have an HIV test
15:29
and it just oh
15:30
my gosh
15:31
it just kept getting worse and worse and worse
15:33
so I'm like well um
15:36
you know I've got three to six months to live
15:38
this is what do we do
15:40
so I went ahead and signed up for the biopsy
15:42
and they took the biopsy and um
15:47
said no
15:48
it doesn't look like cancer and so that I
15:52
waited for them to figure it out
15:53
what it was it came back that I have a rare autoimmune
15:57
called sarcoidosis
15:59
that put little granulomas in my spleen and my lung
16:02
and made my lymph nodes enlarge
16:04
which looked like metastatic cancer
16:07
but I did not know this until the biopsy
16:11
was the beginning of of January
16:13
when I was told I had three months to live
16:15
and I didn't get the results of this for two months
16:20
because I had to wait you know
16:22
I had all this stuff I had going on
16:24
so for two months
16:25
I sat there thinking I was dying any day
16:29
because three to six months to live
16:31
so then when I I thought well
16:33
sarcoidosis is better than metastatic cancer
16:36
until I looked up the the side effect or the
16:39
the effects of sarcoidosis
16:40
and it really could have been a lot worse
16:42
but luckily for me I
16:44
it wasn't I have weird
16:46
some weird things with it but it never progressed
16:51
to a point where it was life threatening for me
16:54
thank goodness
16:55
so now we're back we're back to square one
16:58
so this is around February
17:00
of 2011
17:03
and they say okay
17:04
we're gonna get you scheduled for the plaque
17:06
we know it's ocular melanoma
17:07
we know that you're fine you know
17:10
everything is kind of calmed down
17:11
you can have surgery now except
17:15
this is the time
17:16
when all the doctors go to their medical meetings
17:17
so we don't have a crew
17:20
like what do you mean you don't have a crew
17:22
we we can't get a full crew together to do the your
17:24
your procedure
17:27
this is February
17:28
I finally got scheduled for my plaque radiation
17:32
April 21st of 2011 four months later
17:36
but the good thing was
17:38
I was gonna have more than three to six months to live
17:41
and I wasn't dying right away
17:43
the bad news was the plaque was gonna cover my macula
17:47
I was gonna lose vision in my eye and oh yes
17:49
go get your affairs in order
17:50
because now you you're gonna live past six months
17:53
but two to five years you only have two to five years
17:56
I was 48 years old
17:59
thinking
18:00
I have two to five years
18:01
how in the world am I going to fit all of my living
18:04
into two and
18:05
two to five years
18:07
yeah so it was
18:08
it was all this emotional stuff
18:10
it was the highs and the lows and the ups and the downs
18:13
and and every time you thought you got some good news
18:15
you got bad news right behind it and
18:17
and then sometimes the bad news
18:20
was followed up with even worse news
18:22
so it was just this big mess of emotions and mind games
18:30
and
18:32
trying to sort out how in the world
18:34
you're gonna pull your life together
18:37
with no vision in one eye
18:39
and now you got sarcoidosis to deal with
18:42
and you you know you
18:44
you're gonna have to have surgery
18:45
you're gonna be out of work
18:46
how how am I gonna do all this
18:49
the doctors were as good as they could be in 2010
18:53
they weren't compassionate
18:54
warm fuzzy guys
18:55
they were very matter of fact people
18:57
and I did appreciate the matter of factness
19:00
but at the same time
19:01
it was really hard that they could deliver such news
19:05
so matter of fact
19:07
you know I
19:08
I never could understand how they could tell somebody
19:11
you have two to five years
19:13
just like oh well
19:14
you know go to the store and
19:15
you know buy a Coke
19:17
that was the tone and it was
19:19
it was very difficult to to grasp that
19:25
so I had the plaque radiation
19:27
and I did okay um
19:31
I had some double vision for a couple of months
19:35
I had to have a prism put on my glasses
19:39
to help counteract the double vision
19:41
I had really bad depth perception issues
19:44
uh it was
19:45
it was a long it was a long recovery for
19:48
for me well
19:49
I had the plaque in
19:51
I pretty much camped out on the couch
19:52
cause I couldn't lay flat
19:53
it hurt anytime I moved my eye
19:55
it hurt cause they cut the muscle
19:58
put the plaque in and every time you moved your eye
20:00
it pinched and if you move one eye
20:02
the other eye moves so
20:03
I sat with my eyes closed
20:05
and listened to the television for five days
20:08
but the good thing was in North Carolina
20:10
they just passed a law that I was able to go home
20:12
so I didn't have to spend the night in the hospital
20:14
which also kept costs down
20:16
so we were excited about that
20:19
um
20:21
then going forward was just trying to recover
20:25
trying to learn how to drive again
20:26
and trying to figure out
20:28
all the stuff that nobody tells you
20:29
like when you go to pour something
20:31
you're gonna spill all over your counter and
20:33
and if you throw something away
20:35
you're probably gonna miss the trash can
20:37
and anything that try putting on makeup
20:40
when you don't have any depth perception
20:42
you know it
20:42
it was just really hard
20:44
but these are all the things nobody tells you about
20:47
you know
20:49
learning to drive when you have crazy vision um is
20:54
is hard and it took me
20:55
I mean I was very cautious
20:57
I went around the block a couple of times
20:59
I wouldn't venture far in the beginning
21:01
because it was really hard
21:02
and freeways were difficult to navigate
21:07
so
21:09
the whole first five months with
21:13
it was just a whirlwind
21:15
fuzzy blur that I can remember it like it was yesterday
21:19
but at the time it wasn't like it was really happening
21:23
it was like it was happening to somebody else
21:25
and I was watching
21:26
that makes sense kind of surreal
21:29
yeah very surreal
21:30
very surreal yeah uh huh
21:34
alright well
21:34
we are gonna wrap it up there for this first episode
21:38
and we will see you guys all back on our next episode