Latest / The Eye Believe Podcast / My 15 years | Episode 6: Coping with Scanxiety

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My 15 years | Episode 6: Coping with Scanxiety · The Eye Believe Podcast

0:05
hey everyone
0:05
welcome back to Melody's 15 years
0:07
today we are talking about living with uncertainty
0:10
and scanxiety now
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I know this is a big topic for ocular melanoma patients
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so let's jump in where do you wanna start
0:19
I think the uncertainty leads into the scanxiety
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um I think living with uncertainty is a
0:26
is a really tough one because most
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most people when they go to the doctor
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they're told bad news
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uh
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there's a few physicians out there who are still saying
0:37
oh don't worry about it
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you know it'll be fine
0:40
but I think even those patients who see those doctors
0:42
don't really feel fine
0:44
but then there's another set of doctors that they're
0:46
like oh
0:46
you got two to five years
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and oh
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you know there's no cure if you metastasize
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and it leaves patients in this limbo land
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I mean I know I was in limbo for five years
0:58
um and when you're living
1:01
every three to six months between scans
1:05
is really hard and
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and
1:07
you're constantly waiting for the other shoe to drop
1:10
you're constantly thinking
1:13
I have an expiration date
1:15
when before you were diagnosed with ocular melanoma
1:18
you didn't even think about your expiration date
1:21
you know you think oh
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I'm gonna live a long life
1:23
I'm gonna retire have grandkids
1:25
I'm just gonna die when I'm old
1:27
and then you get this diagnosis
1:29
and all of a sudden death becomes more of a reality
1:32
and it's always kind of lurking there
1:35
and I know I have said this before that
1:38
when you have ocular melanoma
1:40
it's different than other cancers and
1:42
I have had other cancer
1:44
so this is why I can say that when I had kidney cancer
1:46
I didn't wake up every morning saying oh
1:48
I have kidney cancer but I wake up every morning now
1:52
and I can't see out of one eye
1:53
I know I have ocular melanoma
1:55
I know where things can go
1:59
I know that at any moment
2:01
even though I am 15 years out
2:02
I could get metastatic disease
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cause it
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you you don't have that
2:08
five years I can just make it to five years
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I'm clear when I had kidney cancer
2:12
I knew I just needed to make it to five years
2:14
if I could get to five years
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I'd be good
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and I made it to five years on that
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and I was good and the doctor said
2:19
see you later bye
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and I am no longer followed for kidney cancer
2:23
which is a good it was a good relief
2:26
but at the same time
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I don't have that with ocular melanoma
2:30
I don't have that finality
2:33
it's it's just lingers and goes on and on and on
2:37
and that's the uncertainty
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thing is because you know that you're never safe
2:43
and you might not think about it every day
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but you think about it often enough
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and it usually peaks around scan time
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because you know
2:54
you can kind of put in the back of your mind uh
2:56
but then here comes scan time
2:58
and then you're thinking okay
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I gotta start getting ready for my scan
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and then the scanxiety comes in
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and that's a an anxiety over a scan
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and it's hard because a lot of people fear MRIs
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they don't like them
3:12
they need medication to get through the scan
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uh and I remember I was one of those
3:18
and I had this really great technician
3:20
she says don't worry about
3:22
we're not scanning your your head
3:23
we'll put you in feet first
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and when she started putting me in feet first backwards
3:27
I'm like oh hey
3:28
I can do this and honestly
3:31
I am not a fearful person
3:32
I ride roller coasters
3:34
I used to ride roller coasters before I got old
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but I I've I
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I drive whenever I want I drive at night
3:40
I go I travel across the country by myself
3:42
I went to Europe by myself
3:44
I'm not a fearful person
3:46
but that MRI machine
3:50
I don't like it and it's fearful because I I
3:54
I don't like being having my head in it
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and the very first MRI
3:58
I can still remember my very first MRI
4:00
took me about four hours to be able to get my head
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and when they do a um
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when they do a head MRI
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it's different than doing a body MRI
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you get a you get a
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like a
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it's not a mask but it's like a shield
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and they bolt it to the table and you can't move
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and I have that's
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that is a fear of mine
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I don't like being tied down or restrained
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and I felt very tied down and restrained
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they tried twice with nothing
4:30
they called the doctor
4:30
the doctor gave me a prescription for some valium
4:34
and it was a little bit better
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but I couldn't make it all the way through
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so then they tried again let
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let me come out let me rest
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put me back in couldn't do it
4:43
call the doctor
4:43
the doctor gave me a little bit better volume hahaha
4:46
to where I was drowsy but you can't be asleep
4:49
because you gotta breathe and you gotta do things
4:51
you gotta follow their instructions
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so you can't be totally knocked out
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so I had to be pretty
4:57
pretty heavily sedated to get my head into that machine
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and I think people don't understand that side of it
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either you think
5:04
oh it's an MRI
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just go in and have an MRI
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no when your head has to go in that tube
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a lot of us have a fear of that
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and um
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I don't like the tube I don't like MRIs
5:14
I am blessed
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now I don't even have to have one every year anymore
5:17
um I have a doctor who does an X
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a ultrasound um
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you know chest X ray
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and I'm good to go
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but for years I had to have those MRIs
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you know three years it was every three months
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then two years it was every six months
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and then for five years it was once a year
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and then there was a time during covid
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I didn't even get one I skipped it cause I couldn't
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you know they were
5:39
you could only get an MRI
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if you had a reason to have an MRI
5:42
and a follow up was not a reason so
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if people are fearful or anxious to start with
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an MRI is going to be more intimidating
5:53
CT scans can be intimidating
5:55
you're very you're put in a very vulnerable position
5:58
it's hard to admit I think
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to some people that they're afraid of it
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and then they're made fun of by a lot of people um
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in the outside community that
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not our community we we
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we know what it's like but I've been made fun of
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oh come on
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it's just an MRI what are you afraid of
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it's like you go in there
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you go in there every three months
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and you tell me that it's not triggering
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and it is you know I
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I had to have an MRI of my foot recently
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and I was triggered
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it was my foot but I had to sit on that table
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and they had to move me so close to that tube and
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and it was um
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it was triggering because I've been triggered
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you know I've got this anxiety now towards it
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and I I
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I think people don't understand that
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it's a long lasting kind of a thing
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it it it
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it's not something you can just eh I go have an MRI
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yeah I think maybe a little bit of
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like a PTSD
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yeah very much so
7:01
very much so yeah
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and then you know
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I think we as humans have a natural head in the sand
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if I don't look it's fine
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you know if I don't
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but if I do look then it's gonna be bad
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so if I don't look then I'm fine
7:15
what do you think about that
7:17
I agree
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there's a lot of people keep their head in the sand
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because the reality is too hard
7:21
I put my head in the sand a lot
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you know I
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I and um
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I'm really
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really good at telling other people what to do
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but I'm not really good at following my own advice
7:32
and I I'm 15 years later
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I'm still putting my head in the sand
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you know I go talk to my doctor at five years
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I said I can't do this every six months anymore
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can we move it to every year
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he's like yeah
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then at 10 years I'm like
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I'm so done with MRIs even once a year was too much
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it's too much it's
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it can be suffocating um
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and and you
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even though it's
7:55
might not be something you live with every day
7:57
as it approaches the anxiety builds
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so putting your head in the sand
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I think it's a normal reaction
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that makes sense yeah
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you can't live you can't live like that every day
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right but that's your natural urge
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and so how do you get past that
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or how did you get past it
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I have to do a lot of self talk
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um we have some videos on our website from Anne Osborne
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um and
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she gave us really good coping and meditation skills um
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and I found what works for me is tapping
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so I tap my legs and I tap my forehead
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and I tap my cheeks and that kind of calms me down
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um and then when I'm I
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I don't let them put the washcloth over my eyes cause I
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that doesn't work for me
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some people when they go in the MRI
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putting a washcloth or a towel over their
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their eyes helps them um
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I didn't that freaks me out
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so I think it's you gotta find what works for you
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you know you
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but you have to find something
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to help you get over the hump of
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of the anxiety uh
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and and find something to do before the scan
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as the anxiety starts building
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um find something that you like to do
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uh one of the things I
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that I did when I was getting a lot of scans
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is being from California I love Jamba Juice
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and in Raleigh there's not a lot of Jamba Juice
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just not around um
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it especially wasn't around then
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but I found one close to Duke campus
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and so every time I would have an MRI
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that was my go to I would drive to Duke
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and I would go to the Jamba Juice
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I would get myself a Jamba Juice
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so every scan that was kind of my special
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and I think I think that's a
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that's a good thing is to give
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it's kind of a reward you know
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I made it through it's kind of
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give yourself something pleasurable at the end
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to look forward to
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and I also always like to treat myself
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when I have to do something I don't wanna do
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so I think this is a wonderful idea
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like if I'm
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if I have like
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a long day of like
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meetings or being around people or something
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where I'm just feel kind of overwhelmed
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I feel like I need a treat
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like I need to stop and get
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like a
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like a yummy latte
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not a coffee at home or like
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a cookie or something so
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and it doesn't have to be a food treat
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it could be you know
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you maybe you go get your nails done or
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I mean
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it could be going to the store and buying a new shirt
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anything that is a special I have to do this
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but at least I get this out of it
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yeah and it can be anything
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it can be taking a walk in your favorite park
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it can be to go you know
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whatever going and seeing a friend
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you know you find whatever that is
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it could be helpful um
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for you to get a sense of satisfaction at the end
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does that make sense mm hmm
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yes cause
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you know you've got to look at
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I did it I'm over I
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it's behind me I can move on
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so give yourself something to look forward to
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to that kind of balances the anxiety and
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you know well
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we just did this when we were in DC
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for Rare Disease Day you know
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what did we do at dinner
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um we had dessert because we never have dessert
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but we had dessert because we needed a reward and
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and I'm not saying reward yourself with food
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cause that's a dangerous
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slippery slope for a lot of people
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but that's what worked for us
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you know it was like ooh
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you know let's go
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let's go have dinner and we'll get a yummy dessert
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and we'll we'll go to bed with nice full stomachs
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and we'll feel proud of what we've done
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but it just gives you that time
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to have the anxiety go away
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and relieve the stress of the day or the stress of the
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whatever you have done
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and it can be the same thing for doctor's appointments
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you know
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I used to do the same thing when I'd go to the doctor
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'cause there's once you have your
11:52
your scan that's one anxious moment
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but from then now you gotta go see the doctor
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and you gotta be like okay
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you're sitting in the doctor's room
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and I have a wonderful doctor
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he's I've got a great personality
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so I'm sitting in the waiting room
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and he walks in and he throws the door open
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and he has the piece of paper
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and he throws it at me yeah
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you're good
12:13
and then we start talking about other things
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and he's like well
12:15
I guess I should examine you
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um and
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and we have this really nice relationship now
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so I know that when he comes in
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and he's got a good look on his face
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and he throws the paper at me
12:25
that I know I'm good
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but we've developed that kind of a rapport
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and I think with your doctor
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you'll develop something to know
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when they walk in the door
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you're gonna know if it's good or not
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and as soon as it's good
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everything's good and you're back
12:39
and you're back to you but it's very stressful
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you know it could be
12:44
it could be up to two or three weeks for some people
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from scan to doctor visit
12:48
or heaven forbid if they have to learn it
12:51
bad news on their my chart
12:53
um you know
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I can I'm lucky where I go
12:56
I go get an MRI
12:58
it doesn't even hit my
12:59
my chart until after I've seen the doctor
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cause the doctor has to release it
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so I get my results the same day
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so I don't have to wait so I'm
13:07
I'm blessed there
13:09
that I have a hospital system that is quick
13:12
but a lot of people have to wait weeks
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to find out the results and I can't even imagine that I
13:16
I have a hard time waiting a couple hours
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I can't imagine having to wait two weeks
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for somebody to tell me if my scan is good or not
13:23
it's it's gotta be nerve wracking
13:25
so you have nothing but good things to say
13:27
about your doctor would you say oh
13:29
I love my doctor yeah
13:31
you love him
13:32
do you want to tell people who he is if they're curious
13:34
um I go to university
13:35
of North Carolina and I see Dr Moschos
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and Dr. Moschos is not a name that anybody would know
13:41
because he's not famous for uveal melanoma
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but he's a wonderful melanoma oncologist
13:47
and we have an agreement that
13:49
if I ever was to metastasize
13:51
that he would work with one of the other doctors
13:53
and we would come up with a plan
13:55
but we have a good relationship
13:57
and we've seen each other for many years and
14:00
and it works for me
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that's great I think that's so important
14:03
to hit on what works for you and
14:05
you know
14:06
don't feel pressured that you have to go to Philly
14:07
or you have to go here or you have to see
14:10
you know XYZ
14:12
if you like them that's great
14:15
yes exactly
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it's more important
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to have a good relationship with your doctor
14:20
than what your doctor knows
14:22
in the beginning I mean
14:24
once you metastasize it's a whole different story
14:27
um but I
14:28
I myself am not the person that could travel
14:32
um just to go see a doctor for a checkup and an MRI
14:35
it that drive I have to go two hours as it is
14:39
I could not imagine having to make an all day trek
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in a plane just to go see a doctor
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so um
14:45
I like my doctor he's solid
14:47
he's good he's um
14:49
he has a great personality
14:50
and we get along well and I can ask him anything
14:53
and he will tell me anything I need to know
14:56
so I think for the most part um
15:00
I feel safe with him maybe that's a good thing to say
15:02
I feel safe with him
15:03
I feel that I'm gonna be taken care of and that he
15:06
they know what to look for
15:07
and if I if anything ever shows up that um
15:11
he's gonna catch it and we're gonna work on it together
15:13
and go to a place for better treatment
15:16
yeah that's very important
15:19
so when you go to have your scan
15:22
you get your Jamba Juice you've had your scan
15:25
you wait your couple weeks
15:26
you go back to your appointment
15:27
maybe get another Jamba Juice
15:29
get your results and then do you
15:33
after that after you get the good results
15:35
how long of a peaceful period do you have
15:39
until the scanxiety comes back in
15:41
is it not until your next appointment
15:42
or is it like you know
15:44
does it wear off after a couple weeks
15:46
I think most people after the
15:48
their after the appointment
15:50
well after the scan is over they
15:52
the scanxiety kind of goes
15:54
because
15:54
it's one piece of the puzzle that's out of the way
15:57
I think the the
15:58
just the ongoing stressors of the diagnosis
16:01
the uncertainty lingers it
16:03
it's gonna linger until you get the a OK
16:06
all clear from your doctor or from your
16:08
my chart or epic or whatever you have um
16:10
once you get the all clear
16:12
then you kind of get the who
16:14
the let down and OK I'm good
16:17
and then it starts creeping back up
16:19
closer to the next scan it depends on where people are
16:21
like you when you're doing every three months
16:23
you know you don't get three months of peacefulness
16:26
cause you're you you know you
16:28
you have your MRI
16:30
and then about two weeks before the scan
16:31
or some people it's a month before the scan
16:33
it starts creeping back in and you start thinking
16:36
oh god I gotta get ready for my scan
16:37
and then um
16:38
I remember I was really really busy one year
16:41
and I all of a sudden my scan was there
16:43
it's like oh crap
16:44
I gotta go and have my scan tomorrow and
16:47
and that was great because I was so busy
16:48
I didn't have time to think about it
16:50
but um
16:53
there were times when I um
16:55
well when I was going back and forth
16:56
from your house to North Carolina um
16:59
way back in 2000 I guess 13 14
17:02
12 13 maybe um
17:05
I would have to drive from California to North Carolina
17:07
and I had to go have my scans
17:09
and that's a long time to be in the car
17:11
driving and thinking about what you're
17:13
what I was heading to
17:14
and the uncertainty that I was gonna get
17:17
because this was still within my five years
17:19
so I'm still thinking
17:20
any moment I'm gonna get the bad news
17:23
you know I could remember walking to
17:25
into the the um
17:28
Cancer Center where I was gonna have my MRI
17:30
and I remember thinking I have a bad feeling
17:33
I think this is gonna be the year that
17:35
that the
17:35
the scan that I'm gonna have Mets
17:38
and I remember having this horrible
17:41
heavy feeling knowing something inside me just said
17:45
this could be bad hold on
17:47
this could be bad and of course
17:48
it was clear and I left like
17:49
well that was silly
17:50
worried for nothing but
17:52
but you you can't help it
17:54
it just it's there
17:55
it's in the back of your mind
17:56
and
17:57
that is one of the downsides about being in the group
18:00
is
18:03
you see the people that get the bad news
18:05
and then it get then it comes into your head
18:07
you know and maybe that's what made me think that way
18:10
maybe there was a lot of people that had bad news
18:13
while I was getting a scan
18:14
so
18:15
there's also a lot of extra factors in your scanxiety
18:19
if you're around in the group
18:21
and there's a lot of people that are getting bad news
18:23
and you're going up for a scan
18:24
of course it's gonna be even harder
18:26
yeah I think that's a great point
18:29
yeah the groups are like a double edged sword
18:31
they're great they're wonderful
18:32
full of support but they're also sad when you
18:34
we mourn when they have bad news
18:36
we mourn when somebody passes we're
18:38
you know we feel it like they do
18:41
yeah of course
18:42
yeah yeah
18:44
and knowing that you have the same condition
18:46
you know ocular melanoma as a whole
18:49
then it questions your own mortality
18:51
am I next am I gonna be the one
18:54
yep is this gonna be the scan
18:56
when it's all gonna fall apart
18:58
and I you can't help but think that
19:00
because
19:01
it could be the scan where it just all falls apart
19:04
and I think that that's human nature
19:06
in sort of our daily lives anyway
19:08
I mean not to be morbid
19:09
but I've had the thought before when I
19:11
you know I go to leave the house
19:12
and I'm just having a weird day
19:13
and I think oh god
19:14
is this the you know
19:15
the am I gonna die in a car accident
19:16
is this like
19:16
the day that everything changes
19:18
I think we've all had those weird thoughts
19:19
that just kind of pop in your head
19:21
and you're like I don't know why I thought that
19:22
but they just come
19:23
but when you have something like ocular melanoma
19:26
where it's like
19:27
a legitimate reason to worry about this
19:29
then that thing that's already human nature
19:31
is just exacerbated
19:34
I agree I agree
19:36
but I think um
19:38
I also think that when you deal in the cancer world you
19:41
you you start thinking about your mortality
19:44
a lot more than you probably ever did
19:46
yeah I can imagine
19:47
mmm hmm
19:48
I never thought about it never once I'm
19:51
I can still remember
19:53
like getting kidney cancer diagnosed at 45 and
19:56
you know when they told me oh
19:57
you're fine you're gonna be fine
19:59
you know we caught it early
20:00
you got clean margins you're gonna be fine
20:01
just gotta have a scan once a year for five years
20:04
and I was having scans once a year for five years
20:07
you know until well
20:08
year four
20:10
when I had ocular melanoma
20:11
but the scans were were different
20:13
they were so different
20:15
I was getting MRIs for my kidney cancer
20:18
but it was different and I don't
20:21
I can't explain how come it was different
20:23
but it's just different the one cancer to this cancer
20:28
um I think
20:29
because every I think with the kidney cancer
20:32
every scan brought me closer to five years
20:35
and I knew after five years I was good
20:38
but this cancer just brings me closer to every scan
20:42
could be the scan where it shows
20:44
is ocular melanoma a more aggressive cancer
20:47
than your kidney cancer was
20:49
yes well
20:50
at my stage there's
20:52
if you have extended kidney cancer
20:54
it's very aggressive
20:55
probably even worse than ocular melanoma
20:57
in the beginning um
20:58
and they also have problems with with um
21:01
drugs working on it and
21:05
but when it's found in an early stage
21:07
then no
21:08
it's not that aggressive
21:09
it doesn't get aggressive until it's grown
21:11
it's metastasized somewhere
21:13
it's kind of like ocular melanoma
21:14
when you have it in your eye
21:15
it's not that aggressive you're fine
21:17
but when it metastasizes then the game changes
21:20
um but I think
21:22
because I was told early on that I was high risk
21:28
that I wasn't told oh no
21:30
you're gonna be fine your
21:31
your genetics are low I didn't have genetic testing
21:33
so I don't know so I think it's more of a uh
21:37
of just the heaviness of a lifetime diagnosis
21:42
as a five year diagnosis
21:44
yeah that makes sense
21:47
and I think this is a good way to illustrate
21:50
people not understanding
21:52
unless they have ocular melanoma
21:53
cause we talked before about
21:55
people who don't have cancer
21:56
don't understand they
21:57
you know think you look fine
21:59
so you should be fine and your eyes fine
22:01
so you should be fine
22:02
but even someone with a different cancer
22:04
I mean you with two different cancers
22:06
felt completely different
22:08
so if you have a friend who says
22:10
oh yeah
22:10
you know I had breast cancer
22:11
or I had this cancer I totally get it
22:13
and you feel like they don't
22:15
that's okay and I think that just solidifies why
22:19
finding your community and other OM
22:21
patients is so important
22:24
well it is
22:24
because it's it is completely different
22:26
and people without ocular melanoma
22:28
don't even understand
22:30
you know we talked about
22:31
you know my ex husband calling me and saying hey I
22:34
I now
22:35
I know what it feels like to be diagnosed with cancer
22:37
cause now I have cancer but even his cancer
22:39
compared to my cancer are two different cancers
22:42
you know he has a chronic hairy cell leukemia
22:44
it's chronic
22:46
um but he's probably not gonna die from it
22:51
you know and
22:51
and so when you have a when you have a cancer
22:54
where 50% of the population could die
22:58
there's a heaviness there that it just doesn't ever
23:00
really leave you
23:01
I think I mean
23:02
15 years later it still sits there
23:04
I still think sometimes
23:07
right you know
23:07
I'm only I'm only being checked every two years now
23:11
hmm I don't know
23:14
so when you're going through the scanxiety
23:16
and you feel like people maybe don't understand
23:18
and it just is starting to feel like it's a lot
23:20
it's maybe too much what can you do
23:25
therapy
23:26
therapy therapy therapy
23:28
I can't say enough um
23:30
if you can find a cancer therapist uh
23:34
through your cancer institution
23:36
huge help um
23:38
if you can find a trauma therapist
23:41
huge help uh
23:43
people don't think about cancer being a trauma
23:45
but it is a trauma um
23:47
the diagnosis there's been some studies
23:49
that receiving a cancer diagnosis is like um
23:53
having a major trauma to you uh
23:56
like a horrible car accident or
23:58
or a horrible
24:00
I'm not gonna say that it's not a horrible illness
24:02
but I mean
24:02
a horrible illness like maybe you were in a coma or
24:05
you know you were
24:06
you were hospitalized for a long time
24:07
it can be just as traumatic as witnessing even a murder
24:12
um cause your brain
24:14
your brain works in different ways
24:15
and trauma uh
24:17
can be very difficult to overcome on your own
24:20
um and if none of those will work for you
24:22
find a therapist that you like
24:23
I did not use a trauma therapist
24:25
I used to just a regular counselor
24:28
uh and she was great
24:29
and she understood and she gave
24:31
she was knowledgeable enough to give me tools
24:34
um I did I
24:36
I researched I listened to Anne a lot in her webinars
24:39
her and I talked a lot and she
24:41
you know kept trying to tell me
24:42
don't give up on meditating
24:44
you know you and I've had that conversation
24:46
I have a hard time meditating
24:47
I can't shut my brain off
24:49
and I just keep trying and
24:51
and you know
24:51
even if you're not
24:52
what you even think is 100% successful
24:56
what is successful when it comes to
24:59
to trauma and overcoming it
25:01
but you just keep working at it
25:02
you'll get there even if you're doing little
25:04
tiny pieces of it
25:05
but I think therapy is a huge piece of the puzzle
25:08
and I wish that more doctors would send patients
25:12
to a medical oncologist and to a therapist
25:15
because it's this is a heavy cancer to deal with
25:17
and it's unfortunate but my having therapy helped me
25:22
it helped me deal with the scanxiety
25:24
it helped me deal with the uncertainty
25:26
it helped me live with the day to day unknowns
25:32
um she's the one who got me to
25:34
stop thinking that I'm terminal
25:35
she's like you're not terminal
25:37
you're not dying tomorrow
25:38
stop saying that to yourself
25:39
because the more negative
25:41
in information that you feed back to yourself
25:44
the more that becomes a reality
25:46
and then it becomes part of your identity
25:48
and that's what had happened to me
25:50
I had let it become part of my identity
25:52
and I that was a bad thing
25:54
it helped me with my marital problems
25:57
you know um
25:58
we did not get divorced right away
26:00
you know it took us a long time to get divorced
26:01
we tried many times to get back together
26:04
we kept trying thinking we could fix it
26:06
and so she would she helped me with that
26:08
so I mean
26:09
there were there
26:10
there was a lot of things
26:11
you know that that was helped
26:14
relationships were were kind of a big thing
26:17
yeah
26:19
so therapy is is huge
26:21
absolutely and because you mentioned meditation
26:24
I just wanna say if anyone is listening and saying
26:27
I can't do it either I used to say that too
26:30
I used to say
26:30
there's no way I can just sit and think about nothing
26:32
but then I realized when you actually meditate
26:35
you're not thinking about nothing
26:36
you're not'cause I had this idea that it was like
26:39
you're just supposed to sit there and not think
26:41
and clear your mind and have this like
26:42
clear mind which is impossible
26:44
and that's actually not what it is
26:46
thank goodness so um
26:48
if I cannot some people can do that
26:52
I can't either but if you're thinking oh
26:53
I could never just sit there
26:54
you don't have to do that
26:55
if you go on your phone and look at podcasts or
26:58
you know iPad
26:59
whatever you have go to your podcast app
27:02
and there are free meditation podcasts
27:06
where they're guided so all you do is listen to it
27:09
and it will walk you through
27:11
you know you're walking through a forest
27:12
and there's a beam of light
27:13
and there's a pond and a bunny and
27:15
you know you just think it and it
27:17
some people a small percentage of people
27:19
can't visualize when they close their eyes
27:22
and if that's you and you're saying
27:23
well I can't do that either
27:24
that's okay you don't have to picture it like a picture
27:27
you can just think the words
27:28
but it's just the point of being mindful and
27:31
and it puts your focus on this one thing
27:34
and then when you get used to it
27:36
you can do it without the guided ones
27:38
you can just do it yourself
27:39
but in the beginning do a guided one
27:42
and it's like it's
27:43
it's like story time when you're a little kid
27:45
someone's telling you a story
27:46
and you're just following along
27:48
it's easy
27:49
and there are so many studies about the health benefits
27:52
you can look them up cause I can't remember numbers
27:54
so I can't tell you what they are
27:56
but it's like a very small amount of time
27:59
meditating completely transforms things in your brain
28:03
and it's so so good for you
28:05
so I do highly encourage that if
28:07
if you're like ah
28:08
there's so many things and I can't do all of them
28:11
if you just pick one like
28:13
try that it's easy
28:15
you can do it in your bed or on your couch
28:19
yeah and
28:20
you know there's
28:21
you can yoga do you know
28:23
there's lots you can do chair yoga
28:24
you don't have to get do like
28:25
traditional yoga um
28:27
that that's helpful
28:27
some kind of an exercise program
28:29
going out walking
28:30
walking is my therapy um
28:32
so that that's a
28:34
you know you just gotta be careful
28:35
please don't fall that's a bad thing
28:37
no um
28:39
but but
28:39
you know walk in a safe
28:41
in a safe place and
28:43
you know do
28:44
do something that brings you peace
28:46
that you can stop thinking about all the bad things
28:49
uh but one of the things
28:51
too is it use your
28:52
your cancer center most of us
28:54
not all of us
28:55
but most of us go to an oncologist at a cancer center
28:58
they have great resources
29:00
and their resources are not all for ocular melanoma
29:02
but they have cancer patient resources
29:04
use them they're great
29:06
they have they have support groups
29:08
they have classes they have
29:10
you know handouts
29:11
they have all kinds of stuff
29:12
you don't know what's gonna work for you
29:15
until you find it so keep looking
29:18
you know you guys
29:19
we can get into that negativity
29:21
I can't do yoga I can't do meditation
29:23
I can't stand a therapist
29:25
I don't like to go for a walk
29:27
there's something out there
29:29
and don't focus on the negative
29:31
I can't I can't
29:32
I won't I don't focus on the positive
29:34
what can you do what do you like
29:36
and you know as far as therapists
29:38
you have your regular therapist
29:40
your trauma therapist like you were talking about
29:42
cancer therapist you also can go other directions
29:44
you could go to a therapist at your church
29:47
you could do a psychotherapist
29:48
a hypnotherapist there's like
29:51
there is something for everyone
29:52
I'm pretty pretty sure
29:55
yes
29:57
well and that's the thing
29:58
I think that
29:58
that everybody needs to find what works for them
30:00
so you know
30:01
I think you know
30:02
I know in our patient meetings we've
30:04
we've always had people that
30:05
you know harp on meditation and yoga
30:07
meditation and yoga and then it's like okay
30:09
there's got to be something else
30:10
besides meditation and yoga
30:12
um but even um
30:14
we had we had a chiropractor that did a couple of
30:17
of did a patient meeting and a few podcast with us
30:19
it was awesome
30:20
but he was also into integrative medicine
30:22
but he would talk about um
30:24
just things that you could do at home
30:26
to make yourself feel better
30:27
through stretching through
30:29
you know just
30:30
just movement some kind of movement
30:34
so find your thing you know
30:36
find your thing
30:37
cause there is a thing that's gonna help you relax
30:40
and help you process gardening
30:42
art painting
30:43
like it doesn't matter anything
30:46
I'm a putter I like to putter in my yard
30:48
there's nothing makes me happier
30:50
where I can just put on some music
30:51
and I just go putter in my yard
30:53
I don't think about things
30:54
I just think about whatever I'm doing weeding
30:57
pruning a plant and that's kind of my happy place
31:00
and I like to just putter
31:02
I don't want to have it really
31:03
even an agenda I don't want to have a to do list
31:06
I just want to go that sounds terrible to me
31:08
so like we said
31:11
whatever works for you
31:13
that's the last thing I want to do
31:16
let's go pull weeds no
31:17
thank you I know
31:20
yeah well
31:21
you know and journaling
31:22
journaling is also
31:23
if you don't wanna go talk to somebody journal
31:25
journal is therapeutic it doesn't work for me
31:27
I can't journal
31:29
no journaling and I do not get along
31:32
I don't
31:33
yeah
31:35
no I'm in the middle of writing
31:37
and then my brain goes on
31:38
I've got a brain like a pinball machine
31:40
so it's
31:41
and I can't keep one thought
31:42
and then I'm like
31:44
and I'll write two pages and I never go back
31:46
my brain goes faster than my hand is my problem
31:49
I can't write that fast
31:50
and then I end up just doing a squiggle
31:52
because I'm like I
31:54
I'm on to the next sentence
31:58
yeah maybe my brain goes faster than my mouth too
32:00
so like a
32:01
like a digital journal
32:04
you could talk
32:06
you can do that you can
32:07
some people also do video journals where they um
32:10
video themselves
32:12
so but you gotta find what works for you
32:14
you know Danet
32:16
her thing is fantasy books
32:17
that's where her she goes and gets lost and
32:20
and you you know
32:22
it's not my thing although I do love Bridgerton
32:24
I did get lost in that that was great
32:27
yeah but you know there's
32:29
so there's things you just gotta find your thing
32:33
don't stop till you find it
32:36
and don't the I
32:37
I have to say this don't make the biggest mistake
32:40
of trying to force yourself
32:42
into something that doesn't fit you
32:44
if you are not a yoga meditator
32:47
you and you've truly tried and you
32:50
it is not for you don't do it
32:52
do something that fits for you
32:54
my friend Zsa Zsa her thing is
32:56
she takes gourds and she makes lanterns out of them
32:59
that's her that's her thing
33:00
she likes to get in there with her tools
33:02
and drill on gourds and I'm thinking
33:04
oh my god that sounds horrible
33:06
absolutely no
33:08
but for her it's her thing
33:09
you know so she's a patient
33:12
yes Zsa Zsa
33:13
she's a patient um
33:14
and we made friends
33:15
we became friends because of the support groups um
33:18
and we we become very good friends and
33:21
but that's her that's her thing
33:22
she's crafty she needs to do stuff with her hands
33:25
and I am not a crafter so
33:27
you know just cause your friend
33:28
it works for them doesn't mean it's gonna work for you
33:30
but find something there is something out there
33:33
some people knit some people crochet
33:35
I don't do that either yeah absolutely
33:38
I think that's very important
33:40
but I do think therapy helps everybody
33:42
if you can just find the person
33:43
and if you don't
33:46
yeah and if you don't love the person you're with
33:48
if it just doesn't feel right
33:50
don't stay because you feel guilty
33:52
like it's okay to find somebody else
33:55
right true
33:55
same thing goes for doctors
33:56
if you're not jiving with your doctor
33:59
find another one you shouldn't
34:01
you don't need more stress
34:02
when it comes to scanxiety
34:04
or the fear of a scan result
34:07
or fear of going to the doctor
34:09
you need to find somebody that you mesh with
34:11
like I go to Dr. Moschos
34:12
we mesh you know
34:14
he know I know that he can throw a piece of paper at me
34:17
he knows he can throw a piece of paper at me
34:18
how did we know one day
34:20
he walked in the door and threw a piece of paper at me
34:22
and and I guess he just knew enough of me that
34:26
I would think that would be funny
34:28
but he's you know
34:29
so you find your doctor that works
34:30
I'm sure there's a lot of people that
34:32
if their doctor threw a piece of paper at them
34:34
they would be horrified but it works
34:36
it works for me lighten the mood
34:38
no yeah yeah right
34:41
exactly absolutely
34:43
so find your find your jam
34:45
find what works for you
34:46
because there's something that does
34:47
but don't let scanxiety and fear trap you
34:53
because that's a I've been there
34:56
terrible terrible feeling
34:58
I I let it trap me for five years
35:00
and I said no more
35:01
I'm not gonna do it anymore
35:03
and you know
35:04
I moved my scan schedule
35:05
to where I thought I could handle it
35:07
and I'm always adjusting it
35:10
and I'm okay with it
35:13
and that's part of being your own advocate
35:16
you told your doctor what worked for you
35:18
and he agreed with it
35:19
and you made the decision together
35:24
yes and if he would have said
35:26
I don't feel comfortable with that
35:27
I would have rethought it
35:28
but because he said I'm comfortable with that
35:30
then I was comfortable with that
35:31
and now we have a we have a plan and a relationship
35:33
because your team at the end of the day
35:36
you're a team
35:39
you should have a a team
35:41
a medical and
35:43
well medical team
35:44
because even though it's a therapist
35:46
it's mental health it's still medical
35:48
you should have a team that works together
35:49
you should you know
35:50
your ocular oncologist
35:51
your medical oncologist therapist
35:53
any integrative medicine that you're doing
35:55
anything that you're doing
35:56
you should bring have a team
35:57
and you should feel good in your team
36:00
and and I
36:02
that's one thing I have to say about Danet
36:04
is she has worked very hard to have a good team
36:09
and her doctor her
36:11
her oncologist ocular oncologist
36:14
integrative doctor
36:15
and everybody works together and they're all on board
36:18
and they all are like yeah
36:19
this is good yeah
36:20
keep going and she's got a team
36:23
and her team always knows what's going on
36:25
and I think more of us need to have that team
36:29
so that we don't feel not supported
36:31
cause it's a isolating
36:34
unsupportive disease anyway
36:36
so get get a team where you feel like you've got
36:39
they've got your back absolutely
36:42
very important yeah
36:44
alright anything else you wanna cover in this episode
36:48
all right I don't think so
36:50
okay it's a good place to leave
36:51
and speaking of having a team
36:53
thank you for being here and watching
36:54
and being on our team so um
36:57
we're gonna leave you here
36:58
but check out our website
37:00
ACureInSight.org
37:01
there's lots of resources there
37:02
if you need a team if you need a doctor
37:05
a second opinion you want to build your medical team
37:07
we have a physician finder on the website
37:09
you can check out the physician finder
37:11
check them out and we have a new project coming soon
37:14
where we're gonna be spotlighting some OM doctors
37:17
so please subscribe to our channel
37:19
if you haven't subscribed
37:21
it'll be on YouTube as well as Podbean
37:24
Apple Spotify
37:25
anywhere else you get a podcast
37:27
and that's gonna be a really exciting project
37:29
do you want to tell them I can
37:31
um yeah
37:32
okay well
37:33
I will so we have a new project coming
37:36
we're gonna start spotlighting the OM doctors
37:39
because there are so many times
37:40
patients are asking each other
37:42
have you heard of this doctor
37:43
have you been to them what are they like
37:45
so we thought you know
37:46
we have doctors on the podcast all the time
37:48
but they're always talking about a topic
37:50
this time let's bring them on
37:52
and have them talk about themselves
37:54
their background what they specialize in
37:56
what they do where they are
37:58
what sets them apart
38:00
everything you would like to know about your doctor
38:02
so we're gonna spotlight these doctors
38:04
they're each gonna get their own episode
38:06
and we're gonna call it What's Up Doc?
38:09
so we're very excited about it
38:11
and if you have questions
38:12
that you would like us to ask in these episodes
38:15
go ahead and email them to me at Megan@ACureInSight.org
38:19
and we'll throw those in the episode
38:22
make sure we ask your questions
38:23
we're gonna poll the community
38:24
and get a whole bunch of great questions
38:26
for these doctors and I've already emailed some
38:28
and they have been so excited about it
38:30
so just understand that they are in your corner
38:33
they want you to have this information
38:35
they want you to succeed and
38:37
they're really excited to bring these episodes to you
38:41
but check out our website ACureInSight.org
38:44
find your physician in the physician finder
38:46
leave us some comments like and subscribe
38:48
and we'll see you guys next time
9:58
yeah I think that's a great way to look at it
35:37
and you should have a team