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A Physician Assistant Becomes the Patient | The Eye Believe Podcast · The Eye Believe Podcast

0:00
hey everyone I'm Megan with the Eye Believe Podcast
0:02
and today we have an amazing guest
0:04
we have Mark Moore
0:05
now I'll tell you what's special about our guest today
0:08
Mark is not only a patient with ocular melanoma
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he is also a physician's assistant
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so I think this is probably the first guest
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we've ever had that's bringing both sides
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the physician side
0:18
the medical knowledge and the patient
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so this is gonna be a really exciting episode for us
0:22
so Mark welcome
0:24
and you are five months past treatment
0:25
so tell us a little bit about yourself
0:28
so um
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I just turned 55 when I got diagnosed
0:33
uh kind of like the median age for diagnosis I think
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I am a physician assistant
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I'm originally from Kentucky
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so I grew up on a small tobacco farm
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I've lived in multiple different areas
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I've lived in Atlanta I lived in Phoenix
0:47
Arizona for 18 years
0:49
and that's when I became very sun aware of
0:52
you know wearing a big hat
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wearing sunscreen wearing my sunglasses
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I have light colored eyes
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so being out in bright light
0:59
has always been uncomfortable for me
1:01
so I've always taken really good care of my eyes
1:04
um I moved to Tennessee about two and a/2 years ago
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to be closer to family
1:09
and that's when my journey with ocular melanoma started
1:13
what I wanted to tell about my story is uh
1:16
being a physician assistant
1:18
I've worked in infectious diseases
1:20
HIV care so I've been
1:22
involved in this field since the mid 90s when uh
1:25
the AIDS epidemic was really bad
1:27
so I've definitely had a lot of carryover from that
1:31
with patients who have been
1:32
very sick patients who have died
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and I've had those end of life discussions with them
1:37
and that's not where I want to go with my talk today
1:39
but it's always something that
1:41
I think anyone who lives with ocular melanoma
1:44
because of the seriousness of it
1:46
has in the back of their head
1:48
I I love being outdoors
1:50
I'm a hobbyist beekeeper I'm a gardener
1:53
I love being outside
1:55
in September of last year I was working in my garden
1:59
kind of bent over you know
2:01
doing some weeding stood up and I had this white flash
2:05
first time I actually realized it
2:07
and not just like a spot like
2:09
my whole visual field turned white for just a second
2:12
and I had never experienced anything like that
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I've had patients have retinal detachments
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and they have come in and said
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you know
2:20
I have like this curtain that's come down over my eye
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and it's just black I can't see
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that's not what I experienced at all
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it was instantaneous it went away
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I went about my day didn't happen again for a few weeks
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then I was outside again and it happened and I thought
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well maybe it's because I'm not wearing my sunglasses
2:40
that the sunlight's coming at the wrong angle
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you know
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you want to convince yourself that nothing's wrong
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right so you try to reason past it
2:48
um I've been a glaucoma suspect for years
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which means I have high pressure in my left eye
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so fortunately
2:55
I'd already had an ophthalmologist that I see annually
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to have check ups on that
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um I was a little bit overdue at the time
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so I was supposed to have gone in June
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and this was already September
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my work asked me to travel back to Phoenix
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where I'm from
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or where I lived actually for 18 years to help
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help with clinic coverage there
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so I did
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Phoenix as you know
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is very bright um
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I got there tired I didn't sleep well
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went to work that day
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and I had another flash as I was going into work
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but I was outside again
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so that's weird why it's happening now
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but you know
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I kept going I was there for a week
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it happened a couple more times while I was there
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and then the very last night I was there
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I was in the hotel room all the lights were out
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I was in bed my eyes were closed
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I had another white flash
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and so that's when I knew something was really wrong
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and I could no longer just chalk it up to
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you know this will go away
3:53
this is something really wrong
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and it was my eye
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that it doesn't have the high pressure
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it's my what I call my good eye
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cause my
4:00
vision has always been crystal clear in this eye
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so fortunately
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where I was already in care with an ophthalmologist
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I was able to call them they uh got me in a week or two
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I always take off a couple weeks in October
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because that's my birthday month
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and I love October
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it starts to cool down in Phoenix and here in Tennessee
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the leaves start turning it's very pretty here
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it's very beautiful so I went in on my birthday
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and so got my checkup and told my ophthalmologist
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hey you know the other eye
4:32
I've been having this white flash in it
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I don't have it all the time
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my vision seems fine otherwise
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and so they looked in my eye
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and he leaned back and he said
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do you know what a choroidal melanoma is
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and I was
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a little confused a little stunned
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I said well yeah
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I've heard of it it got honorable mention in PA school
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I've honestly never had a patient with it
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it's very uncommon and I know it can be serious
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and he said well I need you to understand
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I don't know that's what this is
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but it's very suspicious because that was
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what I'm looking at was not there last year
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so he said
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I want you to go see a specialist and I thought
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okay well this is gonna take 4
5:14
6 weeks to get in to see another specialist
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so I'm gonna have to worry about this the whole time
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and he said no
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we're gonna call
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and get you an appointment as soon as possible
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so I actually got in the next week went to see my um
5:27
now my ocular oncologist
5:28
and he confirmed the diagnosis
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um
5:32
that's when things got a little uh overwhelming
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I would say even for me
5:37
I mean I have a lot of health literacy
5:39
I I know what the terms mean
5:42
but being able to process all this information
5:44
that's being given to me quickly
5:47
to make informed decisions for myself
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was honestly quite overwhelming
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even for me because we're talking about
5:55
a cancer that's vision threatening
5:57
and it's also life threatening right
6:00
so I have been fortunate
6:01
I've been relatively healthy up until this point
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until I found out on my birthday
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that I have ocular melanoma
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um so I
6:10
the oncologist told me
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we need to treat this as soon as possible
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so
6:16
we talked about a brachytherapy or radioactive plaque
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um and I'm familiar with it
6:21
but I again never had a patient who's had this before
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so
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I didn't really understand what would need to happen
6:28
as far as like surgery
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so of course I had lots of questions
6:32
wanted to learn more um
6:33
in my field you know
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we we have some luxury that you know
6:37
when we tell patients that they're living with HIV
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or that they have another infection
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we have a lot of education materials that
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we can give out um
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you know very nice
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it's on
6:47
you know 6th
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7th 8th grade level for people to understand
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I got nothing um
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so of course
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you know I had to start doing my own research
6:56
I'm fortunate that I have access to some medical
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databases that I can look up things for myself
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but you know
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you start looking at Google as well and
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you know Google will tell you
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you know half the patients who get ocular melanoma
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get metastatic disease where the
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the cancer travels to other areas
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so it really is very difficult to
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to process all this information
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I'm very fortunate that I have very close family
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I called one of my sisters and told her
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my other sister I drove up to tell her in person
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and you know
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my family is Appalachian
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so when they hear the cancer word it's
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it's has a big impact especially for our culture
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and being able to have them in my corner
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has been very helpful
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I didn't know anyone else who's gone through this
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I I
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didn't have a lot of information
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that I needed to filter through
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and that's why I wanted to tell my story today
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so maybe it could help other people
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um learned a little bit more about this um
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when I went to see the ocular oncologist
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you know they told me my tumor
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it's 14 by 12 by 5.8 which is medium size
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pretty good size tumor I don't know what that means
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they tell me I have a t 2
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m 0
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n 0
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I don't know what that means
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so I have to teach myself how to do this
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and having the medical background
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fortunately I can get up to speed quickly
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but others may not and then
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trying to understand what happens with the surgery
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you know how much vision will I lose
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um what's in the future for me
8:42
these are also things I have to try to educate myself
8:44
and my family about
8:45
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9:04
so Mark
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how has this diagnosis either affected your career
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or how does your career
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and your knowledge play into coping with the diagnosis
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you know
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it really strips you down to just being a patient right
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we're all consumers of healthcare at some point
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and unfortunately
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this is my time to be a consumer of healthcare
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it really has affected me
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I've always tried to be very empathetic
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when I talk to my patients
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I've had very complicated history doing HIV care
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coming from the AIDS crisis
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when
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almost half of our patients were eventually in hospice
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having difficult conversations with them
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being very empathetic but this has really changed me
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as far as my empathy level with people
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understanding more about trauma
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where people come from
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this is a traumatic event for me
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when I talk to people that know what's going on with me
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especially friends or family or just acquaintances
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the question I get is how's your eye
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you know
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that's not the concern because with the brachytherapy
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it's like 95% successful at local tumor control
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but the bigger thing is you know
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always on the look for um
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a metastatic event with this
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so now knowing um
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what that triggers me a little bit
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whenever people ask me the question
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cause I really don't
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still don't even know how to answer without
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you know trying to make them feel well
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I don't try to make them feel anyway
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but trying to explain to them
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without them feeling guilty of asking the question
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cause I can I appreciate the empathy
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uh it's helped me
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when I talk to patients and maybe they're upset
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or maybe they're angry
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or maybe they've missed a couple of appointments
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you know where's that coming from
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you know are you
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do you feel like you are just giving up
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do you feel like you don't have support in your corner
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do you feel like you know
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it's just too much to navigate
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because even for me it's a lot to navigate
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so it really
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has made me more sensitive to what my patients
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are going through
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and do you feel like because you're in that industry
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that having some of that knowledge was maybe
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a little detrimental that you maybe like knew too much
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yeah it is uh
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you know there's a fine line
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between knowing too much and not knowing enough
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right to make these decisions because uh
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you know I think a knee jerk reaction is
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we'll just take the eye out
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I don't want to you know
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have to even worry about the tumor there
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but then you go and start reading about and it's like
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there's no benefit to this
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you know
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to taking the eye out if you can treat the tumor itself
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um one thing that's
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you know
11:53
been a little difficult with the journey is the term
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useful vision I keep hearing that
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you know even early on
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we want you to have some useful vision
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well how much useful vision will I have
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and I can't get an answer to that
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you know so the term radiation retinitis comes up
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fortunately I understand what that means
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but how much damage will
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and how much vision will I lose over time
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no one knows
12:17
they can't predict that until the event happens
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I have had some dimming of my vision
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um which is a little distracting
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like I this is
12:25
this whole area here is blind
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I can't see my hand moving
12:29
my central vision is great
12:31
unfortunately you know
12:32
my other eye has very good vision as well
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so it it's
12:37
it's been an adjustment and you know
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the feeling that the dark area
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the blindness kind of creeps in like
12:44
is it getting any bigger you know
12:45
that constant worry there is always there too
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definitely I mean
12:49
it's a huge adjustment
12:51
to understand that you are a cancer patient
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to go through the treatments
12:55
and that's your new everyday
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and then also have the vision impairment on top of it
12:59
cause you have to relearn how to do everything
13:01
how was that for you
13:03
a little difficult actually
13:04
um so when I moved to Tennessee
13:07
I took a telehealth job so I do a lot of telehealth
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so working on the computer right
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which already being in my mid 50s
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is a challenge with my eyesight as the day goes on
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because your eyes get tired and using a computer
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trying to focus with it um
13:23
after the surgery you know
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I was told you need about 2 weeks
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and then you'll be okay to go back to work well
13:30
I still couldn't use the computer
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it was so difficult fortunately
13:33
my work has been really good
13:35
they've been very accommodating for this um
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so yeah the
13:39
the the visual change has been a challenge for me
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just based on my work
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the type of work that I do working with telehealth
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I do get to go into the clinics unfortunately
13:51
my central vision's very good
13:53
I can still see
13:53
I can read without glasses not a problem
13:57
so being able to do a physical exam
13:59
cause a lot of times people come in
14:01
they say what's this
14:02
and they'll show you their
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their skin what
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what do you think this is
14:04
well I need to be able to see clearly
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to be able to help people with that
14:09
so change or loss of vision is very concerning for me
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you know and the
14:15
the
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the trauma of having this
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and when I first got the diagnosis
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I was actually practicing walking around
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not using the eye at all
14:24
cause I didn't know how much vision I would lose
14:27
um and
14:28
you know
14:29
I think people tried to make me feel better and say
14:31
well you have another eye so
14:33
but you know
14:34
if I told someone you're gonna have to lose your leg
14:37
I'm not gonna try to make them feel better by saying
14:38
you have another leg um
14:41
I I think
14:41
you know people really try to support you and
14:45
and help you
14:46
and try to make things look a little better
14:48
but they don't also realize how traumatizing
14:51
it really is because my vision
14:52
for me that's the main way I learn
14:54
I'm a visual learner I needed to do my job
14:58
I needed to do a good job for people
15:00
I needed to get around I needed to drive
15:03
so it's kind of scary
15:05
whenever you
15:06
learn that you have something that may actually
15:08
cause you to lose your vision
15:10
yeah absolutely
15:11
and I mean we've talked about it on this podcast
15:13
several times about how the well wishers
15:16
sometimes
15:17
the things they say that they think are helping
15:18
are actually very hurtful
15:20
and they just don't know any better
15:22
cause they've never been through it
15:24
exactly and
15:25
you know
15:25
and you realize for sure when you talk to people
15:29
you know they have that concern
15:31
they don't know the questions to ask right
15:33
they don't know how to make you feel better
15:35
um you know
15:36
I think if I could say something to people
15:40
um
15:41
for someone who's struggling with this
15:43
not necessarily ask how's the eye
15:45
ask how are you doing you know
15:47
how are you doing with all this
15:48
you know cause it really has been a struggle
15:51
you know
15:51
it's been from feeling overwhelmed to feeling depressed
15:55
to um
15:57
going through a lot of pain
15:58
the surgery was very painful for me
16:00
I had a bad corneal abrasion during the surgery itself
16:04
so that's not fun um
16:06
you know and then I was able to come home after surgery
16:10
but then stay in
16:11
had to stay in my room basically for 5 days
16:13
cause the radiation
16:14
did have a lead patch that could come out
16:17
and get dressing changes but
16:19
you know I've got two small dogs that
16:21
I don't know what that level of radiation does to them
16:23
you know if they
16:24
cause they want to be like
16:25
right in my lap the whole time
16:27
so um it
16:29
it it was quite
16:30
it was quite an adventure to get there and
16:32
and I know that people wish us well
16:35
I know that people want us to
16:37
to be better but just um
16:40
just ask people how are you doing
16:42
you know overall
16:43
I think it's the best that you can ask
16:46
the other thing that you know
16:47
I've been really grateful for your podcast
16:50
and other ones that I found
16:51
is the information that's getting out there
16:54
you know my
16:56
my niece's husband
16:58
he got diagnosed with cutaneous melanoma recently
17:01
and so he you know
17:03
he had surgery but he also got adjuvant therapy
17:05
and you know
17:05
I heard the podcast recently
17:07
about some of the neoadjuvant
17:08
that they're looking into
17:10
which is great
17:11
but why don't we have that now
17:13
you know if that was available now
17:16
maybe there'd be a lot less worry about metastatic
17:18
manifestations later
17:20
definitely and I think that's why this is so important
17:23
for our exact niche cancer
17:25
is it's such a small community that if we're not loud
17:29
we're not going to get any attention funding research
17:31
like we have to make the noise
17:33
and so that is the whole point of this
17:36
yeah
17:37
I mean five to six people in a million that get this
17:40
2,000 of these a year
17:43
these orphan cancers or orphan illnesses industry
17:47
unfortunately
17:47
just doesn't put the money into the research
17:50
it is a business in the United States right
17:52
and unfortunately unless they see the profits
17:55
they don't really fund it
17:56
a whole lot now
17:57
that we're under threat of having even more research
18:00
funds cut from us
18:02
I don't know where the future lies with this
18:06
right it's a definite concern
18:08
so what kind of things did you do to help you cope
18:12
when you were finding yourself dealing with anxiety
18:15
and depression
18:16
and all of those emotions that are so normal
18:18
that everyone's gonna go through
18:20
when they get this diagnosis
18:21
what did you find was helpful
18:22
to get you through those things
18:24
my family No. 1 people that are in my life
18:27
my husband
18:29
very supportive there are things I enjoy doing
18:33
like I'm a hobbyist beekeeper
18:35
and when I got the diagnosis and did feel kind of down
18:39
I thought well
18:41
what am I gonna do with these bees
18:42
you know
18:42
am I gonna be able to go through the hive and see
18:45
you know do I need to stop this hobby
18:49
but I realized that you know
18:51
you have to live every day
18:53
like
18:53
you're gonna wake up tomorrow and it's gonna be fine
18:55
just have to do that with this
18:57
so I kind of delved into it now
19:00
and I got like four more colonies on top of it
19:02
so now I'm really busy
19:03
keep myself busy with the things that I enjoy
19:05
right um
19:07
so that also was part of my decision
19:11
on not having the biopsy during surgery
19:14
and I know that's a
19:15
very difficult decision for a lot of people too
19:18
I don't know
19:19
if people get enough information about
19:22
making an informed choice about the biopsy or not
19:25
but for me I just
19:27
I just didn't want to know
19:28
my genetic markers at the time
19:30
it was so devastating learning about this
19:34
uh I'd
19:34
if I had a bad outcome on the biopsy
19:38
I think it would affect the way I approach every day
19:41
so for me I just decided not to
19:44
um so
19:45
I think that's something else that
19:47
people need to get more information on
19:49
because it was just left up to me
19:50
do you want this biopsy or not
20:23
yeah I completely agree
20:24
I think that is such a hard choice to make
20:27
and
20:27
if you don't have all the pieces to make that decision
20:30
you mean how do you go about it
20:31
and it is such a personal decision
20:33
because everyone feels so differently
20:35
some people want every crumb of information
20:37
and other people are like no
20:38
it's too much
20:40
yeah it's too much
20:41
and um
20:43
again I just didn't feel prepared
20:45
for getting the information
20:47
and I don't it
20:49
I was a little worried
20:50
because this growth was not there in my eye a year ago
20:54
right and then all of a sudden it shows
20:56
and it's pretty medium sized
20:57
so it was this an aggressive genetically influenced
21:03
cancer and
21:04
but what's the difference in treatment right
21:06
there's not a whole lot of difference
21:08
you still go through the radiation
21:09
you still go through the monitoring
21:10
maybe you get the monitoring a little more often
21:14
but for right now you know
21:15
I'm on a every six month plan
21:16
so every six months
21:17
I go in and get cat scans of my chest abdomen
21:20
pelvis
21:21
and I guess I'll be doing that for several years
21:23
so now that you're five months out
21:25
how are you doing right now and how are you feeling
21:29
doing well um
21:30
I'm still coping with you know
21:33
like going into a dimly lit room
21:35
and there's this black entity that's like
21:37
right here to my side
21:39
or someone all of a sudden pops up in front of me
21:42
I'm like oh
21:43
where'd you come from
21:45
I've learned when I'm driving
21:46
to turn my head a little bit more
21:48
so that I can see what's off to my right
21:51
so you do have some adaptive strategies that you do
21:54
I'm very worried now about accidents to my eyes
21:59
so I'm constantly like
22:01
I really try to take care of my eyes
22:02
I'm doing any kind of project
22:04
wearing glasses or sunglasses
22:05
so that nothing gets in it
22:08
I'm a little self conscious about it
22:10
but I think overall I'm doing well
22:13
now that I see that
22:15
I look more like I did before surgery
22:17
because there's been a little drooping
22:19
or ptosis that I see in pictures
22:22
it's getting better
22:24
that has helped my attitude a whole lot
22:26
when I first had the surgery
22:28
for a week or two I had my sunglasses on
22:30
when I would go out and I would take it on
22:32
my eye was so red and swollen
22:33
people would kind of step back
22:36
now they don't do that
22:37
so I think life's kind of gotten back to normal
22:40
I try not to get too worried about what's going on
22:43
but I try to stay informed
22:45
that's what that's how I got involved with your podcast
22:47
listening to it and it's been very helpful for me
22:51
well I'm thrilled to hear that it's been helpful
22:53
I'm of course
22:54
incredibly sorry that you're in this situation
22:56
from the very beginning
22:57
but I'm glad that we could be here to help
22:59
and I'm glad that you're here to share
23:00
to share your story because it is so important
23:03
and I think in
23:04
when you're in such a small community of patients
23:08
hearing everyone's story
23:09
it really does help you realize that you aren't alone
23:12
and you aren't the only one
23:13
cause it does feel like that
23:14
like you're why am I the only one that has this
23:17
it does and
23:18
you know as I slowly inform people around me
23:22
I'm starting to hear oh
23:24
you know my uncle had that back in the 1990s
23:27
and someone that I work with
23:29
has someone very close to them
23:31
by marriage and their family
23:33
who has it
23:34
so they kind of understand a little bit more about it
23:37
but for the most part when you tell people
23:38
they're like I've never heard of this
23:40
or did you get too much sun exposure
23:44
the one thing that's been the most helpful is
23:46
my ocular oncologist when I first got the diagnosis
23:50
he told me that that's for sure what this is
23:53
based on the exam
23:56
he said to me this is not anything that you did
23:59
we still don't even know what causes this
24:02
and that was actually quite helpful because
24:04
you know you worry like
24:05
did I have some kind of chemical exposure
24:07
you know growing up on a farm and living in Arizona
24:10
I did get a lot of sunlight
24:11
but knowing that it's not anything that I did
24:14
takes a little bit of the onus off of me too
24:16
I think that's huge I think in every part of life
24:19
having somebody else validate that you're not at fault
24:23
is so empowering and
24:25
I mean it really is
24:27
such a small sentence that carries so much weight
24:31
and I grew up in Phoenix actually
24:33
I don't know if you knew that
24:34
but okay
24:34
I didn't I did
24:36
I lived there until I was twenty and I mean
24:39
we never wore sunglasses when I was a kid
24:41
and a teenager and I
24:42
I have had that thought of like
24:44
I mean I obviously have very light eyes
24:45
and I have had that thought several times'cause
24:48
my mom has ocular melanoma
24:50
and am I gonna get it because
24:51
you know yeah
24:53
they say it's not really genetic
24:54
they say it's you know
24:55
they don't know about the sun exposure
24:56
but that's kind of two big deals
24:59
so it it is something that you do wonder like
25:01
should I have done it differently
25:02
what if I did wear my sunglasses
25:04
what if I didn't do this what if I you know
25:07
you could go on forever right
25:09
and you know trying to educate myself a little more
25:12
now that I'm able to do that
25:14
without the emotional part of how it affects you
25:18
I'm starting to learn
25:19
of an association between Parkinson's disease
25:21
and melanoma I think we talked about this before
25:23
my my mom actually got Parkinson's disease
25:27
while she was pregnant with me
25:29
she started having symptoms of it
25:30
was diagnosed before I was even a year old
25:34
so I've Learned that there is a
25:36
an association with melanoma and Parkinson's
25:39
that persons with Parkinson's have a 4 times higher
25:43
risk of getting melanoma and vice versa
25:45
and that may even include uveal melanoma
25:49
so there have been
25:50
there's a little bit of information that
25:51
siblings of people with Parkinson's
25:53
disease may have increased risk of melanoma
25:55
but there's no information that children
25:57
of people with Parkinson's have it
25:59
so is there a genetic influence here
26:02
those are things you start wondering about
26:04
like how did this happen
26:05
so the research needs to get a little better
26:08
I think but as you pointed out
26:10
the funding is just not there
26:12
and it's
26:13
hard to get the information out to people who need it
26:16
quickly because I had a
26:18
a luxury like I said
26:20
of being pretty health literate and having time
26:23
from the time I saw my oncologist
26:25
till I had the surgery was about 5 weeks
26:28
so I had 5 weeks to learn about this
26:31
um a lot of people
26:33
you know who have large tumors
26:35
they may have to go have surgery in a day or two
26:39
so how how do they deal with this
26:41
I think if there was one spot where people could go and
26:45
you know your foundation
26:46
and some of the others that put information out there
26:49
to kind of
26:49
put it on a level where people can understand quickly
26:52
it's great
26:54
finding other people in our community
26:55
that we can talk to and ask questions
26:57
how did you do this you know
26:59
the Facebook groups
27:00
and being able to reach out to folks who understand
27:03
has been more helpful too
27:04
I think that's a huge part of it is like we said before
27:08
knowing that you're not the only one
27:09
even though it feels like you are
27:10
so I do encourage anyone to join a Facebook group
27:13
if you go to ACureInSight.org our website
27:17
there's a button to go to
27:19
the Tuesday night zoom meeting link
27:21
and every Tuesday night they do a zoom meeting
27:23
and they break out into two different rooms
27:25
regular and metastatic so if you don't want to
27:27
you know if metastatic is not for you
27:29
you don't have to go into that room
27:31
but I think if you can connect with other people
27:34
and just hear someone else's story
27:35
or share your story with someone who's gonna say yeah
27:38
I get it I mean
27:39
I think that's so huge
27:41
and I do encourage anyone to just try
27:43
if you haven't yet yeah
27:44
it's it's really important
27:45
so I hope that everyone can
27:48
find something
27:49
that makes it a little bit better for them
27:51
whether it is a a a zoom group or a chat room or
27:56
you know beekeeping
27:58
find something that helps you along your your path
28:00
gardening yeah
28:02
something like whatever
28:04
is gonna bring you
28:04
the joy that you need to get through that day
28:07
and maybe look at it as you know
28:08
one day at a time like you said
28:10
you know you can't look at the whole picture right now
28:13
just look at a little bit of the picture
28:15
and that's enough well
28:17
and I you know I also
28:19
like to encourage people that are going through this
28:23
don't just accept what your
28:24
your healthcare providers are
28:26
are telling you you know
28:27
ask questions ask the detailed questions
28:29
and maybe
28:31
you don't have
28:31
enough information to even ask the question
28:33
but you know
28:35
who can I call when I have questions after I leave
28:37
where can I go for this because
28:40
that information is important
28:42
for you to make informed choices
28:43
it's really important that you understand
28:46
implications of your choices
28:47
because like for instance
28:49
the radioactive plaque which resolves the tumor
28:52
what's the long term outcome with that
28:54
you know will I get cataracts
28:55
will my lashes fall out um
28:57
what does it affect me on the other side
28:59
cause it is radiation so
29:01
those things need to be carefully explained
29:03
and should have your questions answered
29:06
so as a as a patient
29:07
you know I really strongly encourage you to speak up
29:10
um find information that's on your level
29:13
that you can understand clearly
29:15
so you can make these informed choices
29:17
yeah I mean
29:18
knowledge is power right
29:20
and if you want your power
29:22
seek it go ask the questions
29:23
do the research and if you get overwhelmed
29:26
find somebody in one of the chat groups
29:27
who has a similar situation
29:29
and ask them what did you do
29:31
what did you find what did you ask
29:33
what did they tell you
29:33
and that's a great place to start too
29:36
yeah absolutely
29:38
absolutely
29:40
alright Mark
29:41
is there anything else you'd like to add
29:42
before we wrap up no
29:44
I just wanted to thank you
29:45
guys for all that you do for our community
29:47
and just want to encourage
29:49
anyone who's starting their journey with this
29:51
you know don't give up hope
29:53
things get better over time
29:56
there's good treatments that are coming
29:59
as long as you've got a good team on your side
30:02
as long as they're communicating with you
30:04
you've got a good place to go
30:06
definitely and in the vein of asking questions
30:09
also it's okay to get second opinions
30:10
we encourage you to get second opinions
30:12
find a doctor or a team of doctors that you love
30:15
or that you're that you trust
30:17
I guess it's more important
30:18
and if your current doctor or
30:22
you know
30:22
one of the people in your team isn't quite a good fit
30:25
go get a second opinion and
30:27
and find somebody that is more of a good fit for you
30:31
absolutely and
30:32
you know my particular situation
30:34
I was very fortunate to have a team that I like
30:37
quite a bit my ocular oncologist is great
30:39
I feel like we communicate well
30:41
he even gave me his phone number to text him
30:44
during my five days at home
30:45
I want you to text me every day
30:47
how you're doing you have any questions
30:49
any concerns and he gets right back
30:51
so it's been good to know that
30:52
I have someone who's concerned about me
30:54
as a patient too
30:56
and I I was very fortunate for that
30:58
because I live in a fairly rural
31:00
area resources are a little limited
31:03
in the greater Chattanooga area
31:05
so if I wanted to go find another specialist
31:09
it would be a 3 or 4 hour drive
31:11
so very fortunate with where I am
31:14
that's fantastic I'm happy to hear that
31:17
yeah
31:19
alright well Mark
31:19
thank you so much for being here
31:21
and thank you for sharing your story
31:22
this is really important and I'm
31:24
just thrilled that you came and trusted us to help you
31:27
put that story out there and to everyone who's watching
31:30
please join anything that we put out
31:34
that you think is helpful to you
31:36
whether it's our zoom on Tuesday night
31:38
you can find it on our website
31:39
we have multiple Facebook groups for different things
31:42
if you need help reach out to any of us
31:45
um all of our email addresses are
31:46
our names @ACureInSight.org
31:49
so you have Megan Danet
31:51
Melody Loren
31:52
Suzanne it's all @ACureInSight.org Marlene
31:55
any of us we're all happy to help you
31:58
and then also on our website
31:59
you can subscribe to our newsletter
32:01
that comes out once a month
32:03
at the end of the month
32:04
and it has a lot of great information
32:05
upcoming clinical trial information
32:08
different things like that
32:10
and we are just
32:11
always trying to put out good content to bring to you
32:14
so please subscribe on our YouTube channel
32:16
as well as anywhere you get a podcast Apple Spotify
32:19
Podbean etc
32:21
and follow our social media
32:23
we are trying to bring a lot of information
32:26
a lot of awareness share patient stories
32:28
if you'd like to get involved
32:29
contact us
32:30
we have a lot of ways you can get involved with us
32:32
and we're just happy to be a part of this community
32:36
and be as helpful as we can
32:37
and bring this stuff to you
32:39
connect you whatever we can possibly do
32:40
so if there's anything that you see
32:42
needs to be done in the community
32:43
that we're already not doing
32:45
also please
32:46
reach out to us and let us know what you wanna see
32:48
and how we can make it happen
32:49
and we'd be happy to help you there
32:51
so until next time everyone
32:53
I hope you all stay safe and well
32:54
and we will see you next time