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The Withers' Story Continues | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everyone
0:03
welcome back to the Eye Believe Podcast
0:05
I'm Megan and today we have a very special guest
0:08
we have Ross Wither and his wife
0:09
Megann Wither welcome guys
0:11
hello thanks for having us
0:13
we really appreciate you having us here this evening
0:16
well we're very excited
0:17
we always love a patient story
0:19
they're so fun to share and connect and
0:21
you know hear a story that's like yours
0:23
so we appreciate you for being here
0:24
and sharing your story
0:25
so that you can help all of the people out there
0:27
that are tuning in
0:29
that maybe are just at the beginning of their journey
0:31
or they've been doing it for a while
0:32
I think it's beneficial
0:33
no matter where we are in our journeys
0:35
absolutely we wouldn't be where we are today
0:39
without the people that have helped us along the way
0:42
we're so grateful this community
0:44
we've unfortunately I say become a part of
0:47
I'm glad that the the community exists
0:50
of course but
0:51
you know it's wonderful to be here
0:53
it's the club no one wants to be in
0:54
yeah definitely
0:55
that is what everyone says
0:57
the club no one wants to be in
0:58
and I'm sorry that you're in the club
1:00
but I am glad you're here spending the day with us
1:02
so Ross
1:03
tell us a little bit about yourself
1:04
what do you like to do uh
1:06
I have been a stay at home dad
1:07
for a little over 10 years now
1:09
and I have four kids so um
1:12
what I like to do is enjoy silence
1:15
um haha
1:17
uh I I enjoy video games and and hiking and uh
1:21
camping and pretty much anything outdoors
1:23
that doesn't involve gutting or skinning something but
1:27
uh yeah
1:27
the pretty much uh
1:29
kids and and anytime we can take a trip that's awesome
1:33
and I hear you're on YouTube apparently
1:37
um
1:38
haha
1:38
my Megann has a has a become sort of a um
1:42
a social media I don't want to say guru
1:45
no no
1:46
not very far from guru to be honest
1:48
when we first started this journey with Ross
1:50
I was so overwhelmed with what we were supposed to do
1:53
and where options were
1:55
and we had a whole bunch of information
1:56
that was coming to us and I went to the A Cure In Sight
2:00
website and I tried to figure out what was going on
2:03
but when you're in that panic state
2:05
it's just so hard and one of the things that you know
2:10
has been such a wonderful
2:14
by product I guess of this journey is seeing that
2:19
you know Ross has main character energy
2:21
and it's funny to me
2:22
and I love the quirkiness that he shares with me
2:27
and so why not share it with the entire world
2:29
and it's just a really convenient
2:31
way to keep people in touch
2:33
with what you're doing we had so many people
2:36
not only
2:36
were we overwhelmed with all of the things that were
2:39
being discovered at that time
2:41
but also
2:42
overwhelmed with the support that we were getting
2:45
and so
2:46
I heard from people that I haven't heard from in years
2:49
saying hey
2:50
how are you doing what can I do to help
2:52
and you know
2:53
it was great it was great to
2:54
to hear from people but I had no idea what to tell them
2:58
it has become a really good way for us to just kind of
3:01
update everybody on our status
3:02
on a regular basis
3:03
so we don't constantly get the question of a hey how
3:06
how's everything going um
3:08
you know we can basically just say hey
3:09
check out the website check out YouTube and
3:12
and that'll tell people most of what's going on
3:14
or I mean
3:15
we'll record a segment because having
3:17
not having to tell the story again and again and again
3:20
it just gets draining sometimes
3:23
especially when you're in the very beginning of it
3:26
and so for us to be able to post that on
3:29
on Facebook
3:29
to have a Facebook group dedicated to Ross's diagnosis
3:33
and journey with all of this
3:35
was very helpful we understood that very quickly
3:39
people wanted to know what was going on
3:41
and we knew that we hit a milestone
3:44
when somebody found us on Google
3:48
or TikTok or YouTube
3:50
wherever it was and said hey
3:53
I just got diagnosed yesterday
3:55
and I don't know what to do
3:57
and I'm overwhelmed and we were like hey
4:00
we we got this
4:01
we can help you
4:02
and it was that night we jumped on the phone with um
4:05
that that individual
4:06
and we were on the phone with her for a good hour
4:09
hour and a half so yeah
4:11
and just talking to her about okay
4:12
you know and my husband
4:13
he's like okay Megann
4:14
you know be careful
4:15
I'm very trusting of people
4:16
he's like be careful
4:17
you know like
4:18
you don't know if they're a scammer or if it's fraud
4:20
and she started telling her story
4:22
and we were just so
4:25
moved and humbled that somebody would reach out to us
4:30
and I think part of the thing that motivates
4:33
us to keep telling the story
4:35
is that it helps people to see that Ross is still here
4:40
and that he's still who he is
4:43
and as snarky as ever and we love him for that
4:46
and cancer is definitely not fun
4:49
it obviously takes a toll on a family and an individual
4:53
I'm sure
4:53
there's so much more that's going on in your brain
4:56
than I even have the slightest idea about
5:00
you know I don't even know what's going on up there
5:02
half the time so
5:03
but it's just so important to know
5:05
you know that you're okay
5:07
and they
5:08
the person said to us during that whole journey
5:11
that she was so grateful to see that we kept posting
5:13
because she was worried about the other people
5:16
and what had happened to them
5:18
and the statistics are scary
5:20
when you first find out that you have ocular melanoma
5:24
you first have to spell it Google it can be terrifying
5:28
right yes
5:29
and that's what we all first go to right
5:31
and so when we saw those you know
5:34
it was terrifying and shocking
5:38
but at the same time you find hope
5:41
and I think hope exists in other people
5:44
yeah and I think
5:45
that's why these patient stories are so important
5:48
because we have people who do them
5:49
who are 20 year survivors
5:51
and it is possible so
5:53
I think that that's a really great reason why
5:56
we want everyone to tell their story
5:59
absolutely absolutely
6:01
we've been going through a lot of milestones lately
6:03
we've actually just come up on
6:04
about the year of the diagnosis
6:06
and our first kick off to all of it
6:09
yeah uh
6:10
first trip to go see a a uh
6:13
ocular oncologist happened on the 29th of August
6:16
last year it's a
6:17
it's been a wild year it uh
6:19
it feels like a lot shorter of a time
6:21
well
6:22
and it all started because he wanted to read at night
6:26
I uh
6:27
decided it's hey
6:29
I'm I'm in my 40s
6:30
it's been a while since I've gone to see the eye doctor
6:32
um I've always prided myself
6:33
on being the only member of my immediate family
6:36
growing up
6:36
that didn't need any kind of corrective lenses
6:38
my dad had glasses my mom had glasses
6:40
both my sisters had glasses
6:42
but not me so get into my 40s and I realized hey
6:46
I'm having some trouble reading at night
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and it's a bit of a humbling experience
6:50
so I decided to go see the eye doctor and went in
6:54
and I'm um yeah my
6:55
my happy bouncy self that I usually am when
6:58
when I'm around people um
7:00
hahaha
7:01
and they started doing the peripheral vision test
7:04
where they hold the finger out in front of you
7:06
and I could tell when I got over here on this
7:10
on my right eye that I was failing
7:13
the look on the tech's face was just oh
7:15
this isn't good and then she left
7:17
and then the doctor came in
7:19
and the doctor looked in my eye and said oh
7:22
you have a detached retina
7:23
I need to send you across town to a retinal specialist
7:26
right now right now
7:27
like I know I just dilated your eyes
7:30
but go get in your car and drive across town
7:33
go to a retinal specialist
7:35
so I go to the retinal specialist
7:36
and he does all these flashy
7:39
photography things in my eyes and
7:40
and they do an ultrasound
7:42
first time I'd ever had any type of
7:44
type of ultrasound on my eye it
7:46
it was that was weird
7:49
it was very how does that work
7:51
I I they
7:52
they put the um
7:54
in the first one
7:55
they put the gel over top of the eyelid and
7:56
and just went over the eyelid
7:58
and apparently
8:00
that was enough to see that I had a mass in the
8:04
kind of the the back top of my eye and
8:10
uh that was causing some vision loss
8:13
uh on basically right against my nose
8:15
hadn't really noticed because it's the portion of
8:17
of my vision
8:18
where your brain kind of forgets your nose is there
8:20
he found what was there he diagnosed me um
8:23
told me that I had ocular melanoma
8:25
um a choroidal lesion and sent me to a specialist
8:29
uh in Houston
8:30
Texas and because there's nobody in our state
8:33
there's absolutely nobody in the state of Louisiana
8:35
who treats this um
8:37
a lot of cancer treatment where we are in Baton Rouge
8:39
um a lot of wonderful cancer treatment
8:41
but unfortunately not for this specific type of cancer
8:45
I called my parents um
8:47
and um
8:48
you know as a
8:49
a 44 year old guy uh
8:51
you know calling mom and dad
8:52
hey can you
8:54
I think I might have cancer
8:55
can you come down and watch the kids
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so that
8:58
Megann and I can drive a few hours over to Houston
9:01
to get everything checked out
9:03
and my parents dropped everything
9:05
you know came
9:06
immediately came down
9:07
and we were able to make it out there
9:08
and saw the doctor out there
9:10
and yeah she confirmed diagnosis
9:12
and then I remember what happened at that point
9:16
I remember sitting in a room with
9:18
like a picture of your eyeball
9:20
with something that had looked like
9:22
like Swiss cheese inside of it
9:24
and I remember googling Swiss cheese in my eyeball
9:27
X ray
9:28
it was a long time and I'm not gonna wait ha ha ha
9:32
so yeah it said what it you know
9:35
it's probably eye cancer I was like
9:36
oh my God Ross I think you have cancer
9:38
after that it was kind of a whirlwind
9:40
did all the exams
9:41
that I had done with the retinal specialist
9:43
all over again um
9:45
and a few more that I that I had never seen before
9:47
they confirmed everything
9:49
got measurements and and all that type of thing
9:51
and then I had to come back I think to we measure
9:56
we're gonna leave for the plaque look
9:57
there was just so much chaos
9:59
and ridiculousness with insurance uh
10:02
something had happened
10:03
where they weren't sure if we needed a referral
10:05
and all this and so I've worked in a lot of uh
10:09
call centers my whole life
10:10
and so I just kind of navigated that for Ross
10:13
I was like okay
10:13
you know look
10:14
I think we just need to get everybody on the phone
10:16
and have a conversation
10:17
cause he has to get fitted for this plaque
10:19
so that he can get treated for this cancer that he has
10:24
that we just found out about
10:26
and we need to make sure that he's taken care of
10:28
so can you guys talk
10:29
so that we can make sure that we can get in
10:32
to this appointment on Monday
10:34
we have people coming from out of town
10:35
you know so
10:36
all of this is very orchestrated
10:38
and
10:38
trying to figure out where the different pieces fit
10:40
so we ended up going to again
10:43
getting the him fitted for the plaque
10:45
and had our scheduled date for plaque brachy therapy
10:48
came back in the middle of September to get that done
10:52
and I was actually they
10:54
I was on the the gurney
10:56
had the the hair net on and
10:58
and the the gown and
11:00
and with my butt hanging out and all that and
11:04
IV's going and everything and
11:06
and then I coughed
11:08
and the anesthesiologist happened to be walking by
11:11
yeah and heard me cough
11:13
she like stopped
11:14
she was like like
11:15
and came in and said I don't like the sound of that
11:18
I need to listen to your chest
11:20
listen to my chest and she said
11:23
I think you have a lower respiratory infection
11:26
I can't let you go on with the procedure
11:29
and turned out that that was
11:31
that was correct I
11:32
I did have a lower respiratory infection
11:34
um and so thank you to the anesthesiologist
11:37
you definitely saved my life um
11:39
or at least
11:40
save saved a lot of people
11:41
a lot of complications right
11:43
um
11:44
but uh
11:46
so we yeah we
11:47
we re they remesured uh
11:49
redid the the ultrasound right there and said OK
11:51
we'll reschedule you in
11:52
in a month and you can come back and
11:54
and we'll do it and then after they got the
11:58
after they yeah
11:59
we went home very disappointed
12:01
of course you know
12:02
hug the kids and and hanging out with my parents
12:05
and all that type of thing
12:05
and then I think about a week later I get a
12:08
I got a call from from the doctor and bad news
12:11
they said that the tumor had gotten bigger
12:14
and that they weren't gonna be able to use one plaque
12:16
anymore that they wanted to use two plaques
12:19
and so like a two stage process where I would come in
12:22
I would get the plaque over
12:24
you know one half of it
12:26
and then about six weeks later
12:27
I would come back to get it done again
12:29
for the other half and
12:31
I wasn't really enthused
12:33
with the idea of going under anesthesia
12:35
that many times I wasn't uh
12:37
really hot on the idea of irradiating my eye that much
12:41
poking the bear it felt like yeah
12:43
it it felt like hey
12:44
multiple procedures
12:45
there's more of a chance of something spreading
12:46
at least in my mind
12:47
I don't know how medically sound that theory is
12:50
I think it's important to pause
12:51
at this moment in the story
12:52
and say
12:54
should we tell him about the BB
12:57
hahaha I love this part
13:00
alright so
13:00
the reason that I had gotten an eye exam
13:04
about 15 years ago well
13:06
16 years now is because about 16 years ago I took a
13:10
a ricochet shot to that eye with a BB
13:15
I was uh
13:16
I was shooting at some uh
13:18
cans that I had tied up on
13:20
on a tree and I got a little bored
13:22
and I started shooting at other things
13:23
and I shot at a rock and the rock was too close
13:26
and it ricocheted back and it caught me in the eye
13:29
and the first thing out of my
13:30
out of my mouth was that was expletive deleted stupid
13:34
um and then I went inside
13:36
I went into the bathroom
13:37
I splashed some water in my eye and uh
13:40
and fully expecting blood to be pouring down my face
13:43
and and you just absolute chaos and
13:46
and I I lift my head and
13:48
and go to open my eye and the BB
13:50
falls out and goes right down the drain of the sink
13:53
and my eye was fine I went to the doctor
13:56
they checked it out at that time right
13:58
um doctor said
13:59
there may be a little bit of residual scarring
14:01
that I can't see at the moment
14:03
um but
14:04
you know everything looks fine your
14:05
your eyes looks great so
14:07
when I started getting things like
14:10
the flashes of light in my eye
14:12
from the detached retina I thought hey
14:15
this must be from that
14:16
this must be some residual scarring issue from that BB
14:20
incident and no
14:23
it wasn't if my dad happens to watch this
14:26
I have to say it has been confirmed for me
14:28
by three different doctors
14:30
the BB
14:31
had absolutely nothing to do with me
14:32
developing the cancer
14:35
good to know so
14:37
you know
14:37
we came back home and we're disappointed or whatever
14:39
and we're trying to figure out what's going on
14:41
the new plaque is now we have to do two
14:43
and all of this stuff and I just
14:47
we just started looking at other options
14:49
and I remember turning to him and being like okay
14:51
you know
14:53
we have now another month to figure out something else
14:58
what are our options
15:00
we can go ahead with the two stage plaque
15:03
we can change course and take out the eye
15:07
and go for enucleation
15:08
or we can try and get a second opinion
15:11
and you seem to be leaning towards enucleation
15:14
and I was very adamantly against it
15:16
and as soon as I I said I don't want to lose my eye
15:20
she immediately okay
15:21
it's your body your choice
15:23
that's what we kept
15:24
and we decided to get a second opinion
15:26
and it ends up that
15:27
one of our friends had an acquaintance that through
15:30
you know
15:32
happenstance that had uveal melanoma
15:35
and he was enrolled
15:37
or had done something with a study up in Philadelphia
15:40
and so I had this in the back of my mind
15:43
we are already on this track with the doctor
15:45
we decided not to go with the clinical trial
15:47
at that time but I had it in my mind
15:49
and so I said you know what
15:50
I'm gonna reach out to Philly
15:52
and so I did and it didn't end up working out again
15:55
insurance issues and just trying to figure that out
15:57
and I remember going to bed that night
16:01
really disappointed
16:02
you know
16:03
shed a few tears and and all that just to think
16:05
you know that this great guy that I love so much
16:08
who's clearly adorable you know
16:10
just is not worth putting all of our fight into
16:14
what is that about you know
16:15
and so I woke up the next morning
16:17
and I like to play racing games
16:20
and so I remember coming to a split in the road
16:25
and I said oh
16:26
options
16:28
there are other doctors
16:29
and it's like 4:30 in the morning
16:33
and I took my coffee cup
16:35
and I went and I got on my laptop
16:37
and I emailed 42 different medical teams uh
16:43
wow different medical teams about his ocular melanoma
16:46
I sent pictures of his eyeball
16:49
I said look at it it's untouched
16:52
you know how can you help us
16:53
like please and it turns out through hilarianess
16:57
that I actually emailed the mets study
16:59
instead of the localized study
17:01
but they ended up transferring me
17:04
and getting me over to who I needed to talk to
17:06
and he woke up and I told him look
17:08
Ross this is what I've done
17:09
and if they don't start emailing me back by 12
17:13
I'm gonna start calling and I love it and so she just
17:17
she made it her mission to find some other option and
17:21
and we stumbled on the study and we realized
17:24
you know hey
17:25
this this could be the ticket
17:26
this is you know
17:27
it's something else it's a different approach
17:30
and so basically it just became a game of like
17:32
who could see him before
17:34
the other plaque brachy therapy
17:36
so we kept that appointment
17:37
cause just in case something didn't work out
17:39
you know we had a lot of disappointments before
17:42
so we wanted to just keep our options open
17:43
so we kept the plaque brachy therapy
17:45
appointment with the doctor in Texas
17:47
and then ended up finding a Mayo Clinic
17:50
and that was incredible is amazing
17:53
absolutely love her it's been a wonderful experience
17:55
and so we went up and saw her
17:58
and early October when we went up and saw her uh
18:01
just maybe a few weeks before
18:03
the plaque breaking therapy was scheduled
18:05
and she assessed him gave him a second opinion
18:08
we met with the clinical trial
18:09
and usually I guess she said it was like
18:11
normally a 45 minute conversation
18:13
yeah like so
18:14
because they have to you know
18:15
do all the disclaimer stuff and explain everything
18:17
we're like oh no
18:18
no no
18:18
we've already read it all
18:19
we're good give me a pen
18:21
I'm ready to go
18:23
ha ha it just didn't seem real
18:25
I think yeah
18:25
so we went back in November
18:27
when he got his first dose of Darovasertib
18:29
3 pills twice a day for 6 months was just six months
18:33
that was it oh okay
18:35
it was a long time
18:36
she's the administrator in in in our relationship
18:40
I just keep things running well
18:43
and you know
18:44
we always talk about how important our caregivers are
18:46
and I think this is a great example of
18:49
what the caregiver
18:51
brings to this fight is there is
18:53
you know she's the one who's emailing on your behalf
18:55
and making sure you're taking your medicine
18:57
and I mean the caregivers they are the backbone of this
19:01
well he does it for me
19:03
yeah I don't know how I'm alive yeah absolutely
19:06
absolutely and I think that
19:08
that's a beautiful testament to a good marriage
19:10
as it should be you know
19:13
mutual his original
19:14
plaque brachy therapy was scheduled for our anniversary
19:16
and I was like that's not happening
19:18
you can't get out of it come on
19:20
um yeah
19:21
no no
19:22
it was our anniversary
19:24
I was gonna lose to the first one
19:25
and the second one was gonna
19:26
end up right around Christmas
19:28
oh that's a bummer right
19:31
and so we're like there's got to be a better way
19:32
and I think we were able to just take the chance
19:34
on the clinical trial because one
19:36
everybody was so nice Mayo is incredible
19:39
and the community that they have up there is wonderful
20:15
but with him you know
20:17
we had faith in what
20:18
the clinical trial folks were telling us
20:21
we knew that if we had waited 15 years to get him seen
20:26
we to discover Lenny
20:28
we've called the we called the tumor Lenny
20:30
keep a little brevity to it haha
20:33
yes but you know
20:34
we have to get Lenny out
20:35
and I think that was a way to help our kids understand
20:38
what was going on too
20:40
cause we have the range of children
20:41
we have a 15 year old and 11 year old
20:43
a 6 year old and a 4 year old
20:44
so Ross is very busy as a stay at home dad full
20:47
it's a couple full time jobs
20:50
absolutely there's always some lunch to pack
20:53
somewhere to go some
20:54
some practice that somebody needs to get to something
20:57
but so
20:57
we ended up figuring out a way that Ross could go
21:00
every single month
21:01
up to Mayo Clinic to get more of the Darovasertib
21:05
and it ended up shrinking the tumor 50%
21:08
um if I like to compare it to the size of a BB
21:12
because I think everybody can actualize like
21:14
what a little BB looks like
21:15
and so if I think and you don't quote me on this well
21:20
you can I guess you're quoting me on all the things
21:22
but you know they're recording this dear hahaha
21:27
estimate that the human eyeball
21:30
adult eyeball can hold about 136 BBs
21:34
and at the time when we did all of the math
21:36
to calculate cylindrical volume
21:39
to figure out what the size was
21:41
Ross's tumor was 53 BBs big
21:45
when it was first discovered
21:48
and by the time in January
21:51
when we were doing all the math
21:53
he was down to 31 BBs
21:56
wow yeah
21:58
it was just it was insane
22:00
incredible that's awesome yes
22:03
incredible yes
22:04
and and
22:05
and we know like the clinical trial route is not the
22:08
the route for everybody it's okay if it's not your path
22:10
but for Ross I it was the only path
22:13
there was there was definitely I mean
22:15
even even among some of my family
22:17
my family is all is very medical uh
22:20
my mom was an emergency room nurse for over 30 years
22:22
both my sisters worked in in hospitals
22:25
my oldest sister is now an administrator of hospitals
22:27
in North Carolina
22:29
she uh does amazing work with with folks there
22:31
they're all very pragmatic and logical
22:33
and when we said okay
22:35
we're changing course
22:37
we're gonna do something different
22:38
and I'm getting a second opinion
22:39
they were like
22:39
whoa whoa whoa what why are you delaying this
22:43
and yeah like and it's okay yeah
22:45
you know so that
22:46
you know
22:46
everybody it's everybody's on their own journey and
22:50
you know sometimes
22:51
not everybody understands the journey you're on
22:53
and sometimes
22:54
not everybody's equipped to help you on your
22:56
on your journey at that moment
22:58
you know I mean
22:59
we are so grateful
23:00
for all of the help that your family has given us
23:02
and my family has given us over this period
23:05
I mean
23:05
we live hours and days travel away from our families
23:09
and so for them to just drop everything
23:11
and help us has been such a wonderful gift
23:13
and it's been cool
23:14
because we've been far away from our family
23:16
so they've been able to reconnect with our kids and us
23:19
which is nice
23:20
it really shows you when you are in times of trouble
23:22
who is there and we are very grateful to have
23:26
this wonderful community by our side so
23:29
you know right now
23:30
Ross went back up in June to have plaque brachy therapy
23:33
after six months of taking this pill
23:35
so on the 16th of June I had the plaque installed
23:39
and then I spent four days
23:41
hanging out in an Airbnb in Rochester
23:42
Minnesota um
23:44
and watching bad movies cause that's just what I do
23:48
and on Friday I went back and
23:49
and they took the plaque back out put my
23:52
my eyeball back in and and then I spent um
23:58
we spent the night to just rest up and
24:00
and then we headed back home
24:02
yeah headed back home
24:02
it was well
24:03
sort of a long trip um
24:05
we had to actually drive from Baton Rouge
24:07
Louisiana to our friend's house in uh Seaside
24:11
New Jersey to drop our kids off with them for a week
24:16
so that we could then drive from seaside
24:18
New Jersey across the north part of the country to
24:21
through Ohio to the Mayo Clinic in Rochester
24:24
and then reverse on the way back
24:26
yeah it was real fun on the way back
24:28
yeah I couldn't drive
24:29
of course because I was down an eye
24:31
and 40 hours in well
24:34
it's more like 60 hours in four days
24:37
yeah something along those lines
24:38
I don't even know that part of my life
24:40
I just wanted there were wonderful times
24:43
we enjoyed being on the trip
24:44
and I think that's part of what we love about our story
24:48
is that we've always wanted to travel
24:52
and so we called ourselves and we have owned
24:55
you know the web domain
24:56
the traveling withers for a really long time
24:59
but we never really did anything with it
25:01
or anything like that and so
25:03
when Ross got ocular melanoma
25:07
it was an opportunity for us to start telling our story
25:12
and helping other people see the light
25:15
because it is dark and it can be really scary
25:20
yeah
25:20
and I think it's so important just to find other people
25:24
connect with them
25:25
when I first posted on a Facebook group that Ross had
25:29
ocular melanoma and I didn't know what to do
25:31
and I wasn't quite sure
25:32
how we were going to pay for this
25:34
we were looking at you know
25:35
1700 dollars for two weeks in an Airbnb and just
25:39
you know like
25:40
I'm sorry
25:40
we just paid for school supplies that's hahaha
25:43
and so
25:45
Ashley McCrary
25:46
from Eye On Grace ended up reaching out to us
25:48
and again my husband thought it was a scam
25:50
I'm so grateful that you're gonna help us
25:52
from bad things but you know
25:56
she was like no
25:56
I'm I'm gonna help you this is what we do
25:59
and I think of all of those moments in this journey
26:03
and how divine it's been because the cough led us to
26:08
the clinical trial led us to and
26:11
you know I mean
26:12
and Facebook led us to Ashley
26:14
she didn't start her organization
26:16
till the same month that Ross had been diagnosed
26:18
like that's gotta be something our friend
26:21
knowing this person in the trial
26:22
like all of these things
26:25
just coming together are incredible
26:28
and really make me speechless
26:30
I'm not quite sure what to say about them
26:31
and we want everyone to get a dilated eye exam
26:34
please get a dilated eye exam
26:36
and don't wait 15 years to get an eye exam
26:38
just just cause you got good eyes
26:40
doesn't mean they don't need to get looked at for sure
26:43
so when you did the clinical trial with the Darovasertib
26:46
then when you went to do your brachytherapy
26:49
you only had to do the one plaque
26:50
because it had shrunk so much right
26:52
correct yeah
26:53
they just a single plaque one and done
26:56
that's big huge yeah
26:59
it was it was huge and I'm
27:02
I'm so grateful that I that we knew the people
27:05
sorry it's all just a jumble
27:07
I'm I'm
27:08
I'm thankful for
27:09
for everything that has happened since the diagnosis
27:13
the diagnosis of course was just this this huge thing
27:15
I remember getting in the car
27:18
on the way home from the retinal specialist
27:20
and I'm driving down driving down the road and
27:23
and I'm listening to this song and
27:26
and all of a sudden I start crying
27:29
and I am not the type
27:30
I'm not an emotional guy tend to be very stoic yeah
27:33
you're stoic
27:34
the retinal specialist told me there were three things
27:38
that that basically three stages they were going for
27:41
first they're gonna try and save my life
27:43
then they're gonna try and save my eye and if possible
27:46
they'll try and save my sight and floored yeah
27:52
I was just kind of like okay
27:55
what is that awesome
27:57
thanks um
27:58
thanks for the referral to
27:59
to Texas and I'll see you guys later
28:02
and and it
28:03
it didn't really click what I had just been told
28:08
and then I got in the car and
28:10
and I'm I'm listening to uh
28:13
it was something in the orange
28:15
if anybody wants to know what the actual song was um
28:17
but uh
28:18
listening to this song and all of a sudden
28:20
I realized this guy just told me
28:23
I have cancer and I'm not ready to die
28:28
um so what do I do now
28:31
and I just I started bawling in my car
28:34
and as I'm driving down the road
28:36
which I know super safe to you be dilated eyes cry
28:40
tears streaming down my face driving down the road
28:43
and in midday traffic yeah that was probably
28:47
made it home safe didn't hurt anybody else
28:50
um but yeah
28:51
got home and and told Megann what was going on
28:54
and definitely a very sobering experience
28:56
but everything that has happened since then has
28:59
I almost want to say miraculous
29:00
the people who knew the people
29:03
the people who answered the emails
29:05
the and you
29:06
everything just clicked and fell into place
29:10
for this journey for me to get to this place where
29:14
across the country yeah
29:17
where I'm hopefully on the other side of things
29:21
and I can move on with my life
29:24
and watch my kids grow up
29:26
yeah I call that serendipitous
29:29
it's just all unfolding the way it's supposed to
29:31
and I think that's great and I love that you're coming
29:35
and talking about doing a clinical trial
29:37
because I think there's
29:40
so much need for people to do clinical trials
29:44
and a lot of people are hesitant or afraid to do them
29:47
so thank you for talking about that
29:49
and bringing some light to that
29:51
because
29:52
we're not gonna advance without the clinical trials
29:55
absolutely
29:56
there's a lot of majical research going on that
29:58
that people just don't understand honestly
30:01
a lot of research happening
30:02
that the researchers don't even understand
30:03
what they're doing just for example
30:05
things like Ozempic the GLP1 blockers
30:08
those came from researchers
30:10
looking at the gila monster
30:12
and saying hey
30:13
this creature only eats twice a year
30:15
how does it do that they started analyzing its saliva
30:19
and they realized that
30:20
it does this miraculous job of regulating
30:22
blood sugar
30:23
and they were able to then turn that around
30:25
and turning
30:25
turn it into a pharmaceutical to help humans
30:29
I did not know that
30:31
Ross is a huge store of a whole bunch of wonderful
30:37
fun facts that's crazy
30:40
it's insane oh my gosh gila monsters who knew
30:44
wow they had no idea what they were looking for
30:48
they were just like hey
30:48
that's pretty cool we should look at that
30:51
and this whole medical breakthrough came from it
30:53
you never know what's gonna hit you never know right
30:56
where things are gonna go
30:57
and if we can help the person next
31:02
if Ross can help the person next to us
31:04
like I've been telling him since the beginning
31:06
so you know Ross you're gonna cure cancer man
31:08
like let's go that's how we're approaching this battle
31:12
this is what's gonna happen
31:13
and we're I think not we're but we're like everybody
31:16
you know if we all just contribute and keep fighting
31:19
and keep going
31:21
never give up never surrender
31:24
absolutely Ross has always had the mindset of
31:26
the universe tends to work out
31:28
and unfold the way that it should
31:30
and I think that
31:30
that's just annoyingly positive in this situation
31:35
but I'm grateful we always
31:36
we say now we tell him has to be very very
31:38
very careful with his words
31:42
you know I knew you're gonna bring this up
31:43
I am so
31:45
I'm a stay at home dad and for quite some time
31:49
I have gone without any kind of personal time
31:51
because the kids always need something and
31:53
and there's always something
31:54
around the house that needs doing
31:56
I was getting a little frustrated that hey
31:57
I need some me time and I
32:00
I just I said to the universe
32:02
I just want a week off just give me a week off
32:05
where I don't have any responsibilities
32:07
I can eat whatever I want
32:08
I can play video games and watch bad movies
32:11
and not have to worry about anybody bothering me
32:14
this is not what I meant
32:18
nope
32:20
so now
32:21
I tell him he has to be very careful with his words
32:23
because apparently
32:24
manifestation is something that Ross can just do
32:28
to give himself a week off you know
32:29
I don't think he manifested the cancer that would that would be horrible
32:33
no we
32:33
we are just so grateful for all of the opportunities
32:36
that have come along the way
32:38
and if there's someone who is thinking
32:42
oh my gosh I
32:43
don't know what to do
32:44
and I'm paralyzed with all these choices
32:46
and these statistics
32:48
just understand
32:49
that you don't have to run the whole Marathon
32:52
all in the same day or even in the same moment
32:55
just take it step by step
32:57
yep and understand that you're gonna back
33:00
you're gonna back up a little bit sometimes
33:02
and that's okay because I think that backing up
33:05
allows you to see the larger picture
33:07
and that's a gift
33:08
biggest thing is just to remember breathe
33:11
what's gonna happen is gonna happen
33:13
there's you know beyond what you can actually control
33:17
you know
33:17
getting the help that's out there and finding ways to
33:20
you know help yourself
33:21
it's um
33:22
sorry I lost where I was going hahaha
33:24
I think I think we both practice radical acceptance
33:27
like for us right now we're in a standstill
33:30
talk to a family member earlier today and she asked
33:33
you know well
33:33
so how's Ross you know
33:34
what's going on with him and I'm like well
33:36
really we don't know you know
33:37
we're in the space of in a couple of weeks
33:39
we go see what happened with the plaque
33:42
and get his MRI and his CT scans and all that stuff
33:46
this will be the the first scans and
33:48
and real exam since the procedure
33:50
so um
33:51
I had a 10 day follow up where they looked
33:53
and made sure everything was healing
33:54
the way it was supposed to
33:55
and and nothing looked you know
33:57
horribly wrong or anything like that
33:59
but um here in early September
34:01
where we head back up to Rochester and
34:03
and I get to you know
34:05
go into the the scary loud machine again
34:07
and try not to fall asleep
34:08
try not to fall asleep
34:09
that happened the first time I got an MRI
34:11
actually fell asleep and
34:12
and when I was supposed to be holding my breath
34:14
the guy kept yelling at me haha
34:18
yeah but it'll be interesting when we
34:20
with the radical acceptance
34:21
we just try to figure out like what's the next step
34:24
the next step is
34:24
we make it up to Mayo in the middle of September
34:26
and we figure out what's going on
34:28
and spending time and worry
34:31
is just not productive for us
34:34
it might be productive for you
34:36
I don't know um worries a lot like a rocking chair
34:38
gives you something to do
34:39
but it doesn't get you anywhere yeah
34:42
I don't I don't think worries productive for anybody
34:44
I think that if you can find anything to give yourself
34:48
hope and look forward to and um
34:51
we just did an episode uh
34:53
Danet and I where we talked about scanxiety
34:56
and one of the things that she recommends is to have um
34:59
like a carrot something that you can say alright
35:02
I have to have my scans
35:04
regardless of what the results are
35:07
I'm gonna go treat myself with you know
35:09
a a massage or something special that I want to do
35:13
so that you are having something to look forward to
35:15
and I think that that's important
35:17
to get your mind on something positive
35:20
yeah we
35:21
we definitely found that thinking of it like
35:25
we hadn't been on a trip together without the kids
35:29
and what was it 10 years yeah
35:31
at least when we went to Houston
35:33
and so it was nice to just reconnect and just be like
35:36
okay you know look
35:37
if we're gonna do this we're gonna travel
35:40
we're gonna have fun we're gonna make the best of it
35:43
because these are the hands that were dealt
35:45
and this is what it is
35:47
that's right and you can
35:48
you can look for those little silver linings
35:50
and you can make the best of it
35:52
as you navigate what you have to navigate anyway
35:54
or you can wallow and be in the despair
35:57
and see all the negatives of it and
35:59
and we all have those moments
36:00
and that's okay we're not judging
36:02
I mean we're all gonna do that
36:03
but if you can recognize both sides
36:05
and that you do have a choice between them
36:08
if you
36:08
if you can gravitate towards those silver linings
36:11
go for it as much as you can do it yeah
36:14
somebody asked me the other day
36:16
you know like say
36:17
how do you stay so positive
36:19
with all of the stuff that's going on
36:21
and it's like it's a choice
36:24
mm hmm and I make it every day
36:25
we make it every day when we wake up sometimes yeah
36:29
sometimes after the first cup of coffee
36:31
we make that choice yeah
36:32
and I'm I'm sure
36:33
there are days where you have to make that choice
36:35
multiple times throughout the day
36:37
and for sure maybe you have to remake the choice after
36:40
you have a moment of like
36:42
you know cause I mean
36:44
realistically
36:45
everybody going through this has the moments of why me
36:48
this isn't fair this is the worst thing ever
36:50
and that that's okay that's expected
36:53
and then you know
36:54
get through that and then
36:56
you know hey
36:57
but I also have this and I also
36:59
I'm looking forward to this and um
37:01
you know it's
37:03
we're just trying to give those little seeds of hope
37:06
as you navigate your journey
37:08
Castle Biosciences is a proud sponsor of this
37:11
Eye Believe Podcast Castle's innovative
37:14
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37:16
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37:18
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37:20
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37:27
sometimes when I'm frustrated about something
37:29
I'll give myself a time limit to really just feel it
37:33
and lean into it so I'll say
37:34
I'm gonna give myself 15 minutes to be
37:36
really feeling this
37:38
and then I'm gonna leave it and and try along
37:41
but again my journey is not the same as Ross's
37:44
and my journey is not the same as the patients
37:46
you know a caretaker is different and there's a
37:50
a distance and a a closeness that comes with that
37:54
but my like Ross said
37:56
my mission has become to just help him get into spaces
38:01
where people are interested
38:02
in his eyeball
38:04
I agree with you I have heard 30 minutes
38:07
give yourself 30 minutes and then move on
38:09
because after that you're wallowing
38:11
so if if you if you feel the emotion
38:13
acknowledge it
38:14
give yourself 30 minutes and then move on
38:18
30 minutes if you can way kinder than I was being yeah
38:22
I've heard 30 I mean whatever whatever works for you
38:25
but I think the the point is just
38:27
you hit the point where
38:28
then it does become kind of wallowing
38:30
and then you're not gonna help yourself
38:32
and we're not judging
38:33
we're just saying you're not gonna help yourself yeah
38:37
one of my favorite stories is the story of this donkey
38:41
who fell into a well and the farmer
38:45
decides that he needs to just fill in the well
38:47
because the donkey's old and it's not gonna get out
38:49
lost cause
38:50
you know I've told Ross this story
38:52
please help me tell it that's fine
38:54
so the donkey is braying and all that stuff
38:56
you know
38:57
in in the hole and the farmer's filling in the dirt
39:00
and then all of a sudden
39:02
the donkey stops and the farmer goes okay
39:05
you know
39:06
he's accepted his fate covered in dirt or whatever
39:08
who knows farmers really mean in this story but anyway
39:11
so not a nice guy no not a nice guy at all
39:14
and so all of a sudden he's filling in the hole
39:17
and he starts to see the ears of the donkey
39:19
start to emerge from the hole
39:20
and the donkey was shaking off the dirt
39:23
and just stepping up and I think that's
39:26
something that I've kept
39:27
with me for a really long time
39:29
is that the world is gonna throw things at you
39:32
and all that you can do is you can wallow in it
39:36
and you can be covered and consumed by it
39:38
or you can take a moment and just shake it off
39:41
and step up and use that as strength to motivate your
39:45
journey further I love it
39:46
I think that's great and I think you know
39:48
just acknowledging that everybody has the hope
39:52
the positivity
39:53
the light and the wallow the self indulgent
39:56
the dark and you're gonna walk between them all day
39:59
and it's
39:59
it's up to you which one you wanna gravitate toward
40:02
absolutely balance is important
40:04
it is it is important
40:06
and it's okay
40:07
when you do have those moments of wallowing
40:09
you know we're gonna use that word
40:10
I don't know if everybody likes that word
40:12
but I'll just use it for right now
40:14
you're gonna have those moments
40:15
where you're gonna find yourself there
40:17
and go that's okay yeah
40:19
give yourself that Grace that it's okay
40:21
you you slipped up you had a bad day
40:23
maybe you wallowed the entire day
40:25
maybe a week that's okay
40:27
try it just try again right
40:30
I often
40:31
try to think of what your best friend would say to you
40:33
you know so tell
40:34
talk to yourself like your own best friend
40:36
you know like I
40:37
I don't talk to my best friend like that
40:39
you know exactly
40:41
yes because we're so much kinder to everyone else
40:44
than ourselves
40:45
that's 100% true and I always tell our kids and there's
40:49
there's nothing wrong with your feelings
40:51
you're there's nothing wrong with your emotions
40:53
your emotions are real and
40:54
and they're completely justified
40:56
because you're feeling them
40:58
what really matters is how you react to them
41:02
and then interact with the world because of them
41:05
so that's what you need to work on controlling
41:08
is just that you know
41:09
your reaction to your feelings
41:11
so what is on your horizon now
41:13
well I mean
41:14
we've got the
41:15
the first scans coming up here in early September
41:17
and then after that I I travel back up for study visits
41:21
uh every three months
41:22
and I'll do that for the next three years
41:25
I think yeah
41:25
hopefully at some point
41:26
I think I'm probably going to need a
41:29
they call it an eyelid tuck
41:30
cause I've got this like
41:32
rock raised eyebrow thing going on
41:35
which is funny cause I've never had independent
41:37
control of this eyebrow in my life super power hahaha
41:41
I can raise left one no problem
41:42
but the the right one is it's
41:44
that's the only way
41:44
I can get this eye to open right now
41:47
but my vision's good I've got one field of vision
41:49
I'm apparently healing really quickly
41:51
I can drive again which is super helpful definitely
41:54
oh yeah especially with four kids
41:56
you're gonna be driving all over
41:57
all right well
41:58
is there anything else that you wanna say
42:00
before we wrap up any last message
42:03
story continues yeah
42:04
right the journey is the best is yet to come yeah
42:06
we're gonna keep updating
42:07
people at thetravelingwithers.com
42:10
you can find us all over the internet
42:12
just do a little search for us
42:14
thank you everybody and to all the the doctors
42:17
the nurses the technicians
42:20
the bus drivers the friends and family
42:23
friends and family the the people at the hotel
42:26
you know everybody
42:27
it's it's been incredible
42:29
couldn't have made it this far
42:31
without all those people
42:33
everybody has a nugget wisdom
42:35
and it seems to come right at the right time
42:37
and so we're just serendipitous
42:39
I think that's the best way to describe it
42:41
I like it alright guys
42:43
well thank you so much for being here
42:45
we really appreciate hearing your story
42:48
we love to hear the positivity
42:50
we love to hear someone who's doing a clinical trial
42:52
so thank you just for sharing your story
42:54
it's so important it's it's our pleasure
42:56
thank you for having us thank you
42:58
absolutely alright
43:00
and to everyone who is watching
43:02
thank you because
43:03
we could not do any of this without the viewers
43:05
so please subscribe
43:07
wherever you are listening or watching
43:09
you can find us on YouTube Podbean
43:12
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43:13
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thank you so much our sponsors are sponsoring us
43:20
because you guys are watching
43:21
so without the sponsors and the viewers
43:23
none of this would be possible
43:24
so thank you so much for watching
43:26
thank you to our lovely sponsors
43:28
check out their websites as well
43:29
and if you go to our website
43:31
ACureInSight.org there's a button up at the top
43:33
to subscribe to our newsletter
43:35
please subscribe we send out a monthly
43:38
newsletter with all of the latest information
43:40
that you need to stay up to date in the ocular
43:42
melanoma community as well as some other little
43:44
tidbits throughout the month
43:46
and the biggest news we have right now is the
43:49
Eye Believe Survivorship Seminar is coming up next month
43:52
in October in Raleigh
43:54
we really really hope to see everyone there in person
43:57
um we will be posting the videos of the sessions
44:00
if you can't make it
44:01
so everyone can get the information
44:03
but we're very excited
44:05
so more information coming on that
44:07
follow our socials for all of that information
44:10
or the newsletter as I said
44:12
and also another thing I'd like to tell you guys
44:14
we have a Tuesday night zoom meeting on Facebook
44:17
you can get the link there
44:18
um as well as our other socials
44:20
and that goes through zoom
44:22
that's a great way to connect with other omies
44:24
and find a friend maybe a buddy
44:27
and if you are in a situation
44:29
where you are new to the community
44:30
and you're not sure where to start
44:32
check out our website there's a lot of great resources
44:34
let us know what we can do for you
44:36
all of us have emails that are our name @ACureInSight.org
44:39
so you can email any of us
44:40
we're happy to help and until next time
44:43
I hope you all stay safe and well