Latest / The Eye Believe Podcast / My 15 Years | Episode 11: When It's Not Just Ocular Melanoma

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My 15 Years | Episode 11: When It's Not Just Ocular Melanoma · The Eye Believe Podcast

• 0:05
  hey everyone
• 0:05
  welcome back to Melody's 15 years
• 0:08
  this is episode 11 I'm Megan
• 0:10
  welcome Melody
• 0:12
  thank you so much glad to be back
• 0:15
  today we're gonna talk about other ailments
• 0:17
  aside from cancer that go either with your diagnosis
• 0:21
  maybe they're correlated or maybe they're not
• 0:23
  and you're trying to navigate both
• 0:24
  so let's jump into this take us back to 15 years ago
• 0:30
  when you got your initial OM diagnosis
• 0:33
  did you have any other health stuff going on
• 0:35
  at the time of diagnosis
• 0:37
  I had had a lot of health stuff for years but
• 0:41
  before um
• 0:41
  I was diagnosed with fibromyalgia
• 0:44
  I was diagnosed with skin psoriasis
• 0:47
  um and some weird stuff
• 0:49
  that they really couldn't figure out
• 0:52
  uh but they just treated me like I had fibromyalgia
• 0:55
  and I just dealt with it um
• 0:57
  it created a lot of fatigue and um
• 1:01
  just memory issues and some weird stuff
• 1:03
  but it you know
• 1:03
  I was able to go on with it
• 1:07
  then when I was diagnosed with the ocular melanoma
• 1:10
  they found I had sarcoidosis on top of it
• 1:13
  but maybe it wasn't on top of it
• 1:14
  maybe it was sarcoidosis the whole time
• 1:17
  and they just were calling it fibromyalgia
• 1:19
  they didn't know and I still don't know
• 1:21
  so when I go through my list of conditions
• 1:25
  I put them both down with a question mark
• 1:28
  because we know I have sarcoidosis
• 1:30
  but we don't know um
• 1:32
  I've not been tested for the fibromyalgia
• 1:35
  but the there's a lot of things that
• 1:38
  the symptoms all kind of go together so
• 1:42
  a symptom of one
• 1:43
  can be a symptom of many different things
• 1:46
  so definitely have an autoimmune issue
• 1:49
  that's what I was gonna ask
• 1:50
  are they both autoimmune they are
• 1:53
  they're all yeah
• 1:54
  so there's fibromyalgia psoriasis
• 1:57
  and sarcoidosis are all autoimmune disorders
• 2:02
  yeah
• 2:02
  and I think a lot of times with the immune disorders
• 2:05
  they run in packs so if you get one
• 2:07
  you're likely to get more anyway
• 2:09
  so you very well could have all
• 2:11
  but it is really hard to tell
• 2:13
  yeah one of the side effects of sarcoidosis is
• 2:16
  you can get Lupus luckily
• 2:17
  I've never gotten Lupus so that's a good thing
• 2:20
  but many people that have it go on to get Lupus
• 2:23
  and it can be a very debilitating disease
• 2:27
  uh it's not
• 2:29
  luckily for me
• 2:30
  it hasn't been as debilitating as it is for some
• 2:32
  there's some people that that actually die from it
• 2:35
  um it causes lung issues
• 2:36
  and people have had lung transplants
• 2:38
  um it deposits granulomas all over your body
• 2:41
  and it causes um
• 2:43
  organ failures which
• 2:45
  it's a very serious autoimmune disease
• 2:48
  and there isn't a medicine they can give you
• 2:51
  to make it better so you're just managing symptoms
• 2:55
  so I have a lot of breathing problems
• 2:57
  I'm on an inhaler you know
• 2:58
  I've been told for years that I had asthma
• 3:01
  or reactive airway disease
• 3:03
  but then looking back they're like
• 3:05
  well was it that or was it the sarcoidosis
• 3:07
  all the time and you just never were tested for it
• 3:10
  they don't know
• 3:12
  yeah now do you see a correlation
• 3:17
  with other cancer patients and autoimmune
• 3:20
  do they tend to have a lot of autoimmune
• 3:22
  or is it just random like any normal person
• 3:25
  we have a lot of people that have an autoimmune disease
• 3:29
  there's a bunch of us that have sarcoidosis
• 3:31
  which is really weird um
• 3:33
  a lot
• 3:33
  there's quite a few of us that have psoriatic arthritis
• 3:37
  fibromyalgia I mean there
• 3:38
  there we is it seems to be more so with women
• 3:42
  but
• 3:43
  women seem to get diagnosed with autoimmune disease
• 3:45
  more so than men
• 3:48
  not saying men can't have it
• 3:49
  but men are horrible at going to the doctor
• 3:51
  so sometimes they just live with the symptoms
• 3:53
  and they never get diagnosed for sure
• 3:56
  so has anyone looked into this
• 3:59
  have there been any studies or is anyone
• 4:02
  on tracking this no
• 4:04
  that's one of the questions
• 4:05
  that I made sure we had on our registry
• 4:07
  on the Insight Registry was
• 4:09
  do you have an autoimmune
• 4:10
  because if we can get enough people to
• 4:12
  to fill out the registry and say
• 4:13
  I have an autoimmune
• 4:15
  we might be able to see some kind of a correlation
• 4:18
  so here's an interesting yeah
• 4:20
  and here's an interesting thing that they said
• 4:22
  which I don't understand it
• 4:24
  but they said people that have an autoimmune disease
• 4:26
  are less likely to metastasize than those that do
• 4:29
  I mean backwards
• 4:31
  if you have an autoimmune disease
• 4:32
  you're less likely to metastasize
• 4:35
  than somebody who doesn't have an autoimmune disease
• 4:37
  because you have a your
• 4:39
  you have a heightened immune system
• 4:40
  and I said but I had an autoimmune disease
• 4:42
  when I got diagnosed with ocular melanoma
• 4:44
  so how come it didn't stop
• 4:45
  that they don't know but that's
• 4:48
  that's what they see
• 4:49
  if you have an autoimmune disease and ocular melanoma
• 4:52
  your the metastasis rate is lower
• 4:55
  that's wild yeah
• 4:57
  I don't it's not an official study
• 4:59
  but that's what I've been told
• 5:01
  yeah interesting
• 5:02
  I would love for them to do a study on this
• 5:04
  but you're right if we can get people to register
• 5:07
  um once again
• 5:08
  we're gonna talk
• 5:09
  for just a second about the importance of registering
• 5:12
  then we can figure this out
• 5:15
  this is the thing about the registry
• 5:17
  that I wish more people took seriously
• 5:19
  that I know a lot of people want to join
• 5:21
  and they put it off and they put it off
• 5:22
  but the quicker that we get good data in there
• 5:25
  and we find all these correlations
• 5:27
  the the more we can have to
• 5:29
  for researchers to pay attention to
• 5:32
  but if we have you know
• 5:33
  1,000 patients and 10 of them have an autoimmune
• 5:36
  that's not enough they're gonna be like
• 5:38
  well that's not that many
• 5:40
  but if we have 1000 people in the registry
• 5:43
  and it turns out 500 of them have an autoimmune okay
• 5:46
  that's big they're gonna look into it
• 5:48
  so we need people
• 5:48
  especially if you have an autoimmune disease
• 5:50
  or any other pre existing type ailment
• 5:52
  like an autoimmune disease
• 5:54
  to put it in the registry so that we can track it
• 5:58
  yeah and
• 5:59
  you know that's something that
• 6:01
  maybe nobody would have ever set out to study that
• 6:03
  but once they see it in the data
• 6:06
  then they're like oh whoa
• 6:08
  this has just presented itself
• 6:09
  so yeah
• 6:10
  those questions are really important
• 6:12
  even if they seem menial like oh
• 6:13
  this has nothing to do with my cancer
• 6:15
  maybe it does well
• 6:17
  just talking about the registry for a little bit
• 6:19
  one of the reasons why the questions are in there
• 6:21
  and people get frustrated there's too many questions
• 6:24
  is because we polled patients
• 6:26
  and they said
• 6:26
  these are some of the things they came up with
• 6:29
  like we had people say
• 6:31
  why is there such a large amount of Jewish people
• 6:33
  that have ocular melanoma
• 6:35
  I don't know there
• 6:36
  nobody's looked into it is it a gene thing
• 6:39
  is it you know
• 6:40
  is it just a coincidence
• 6:42
  is it just because they're northern European
• 6:44
  we don't know but that's one of the questions
• 6:47
  are you Jewish and
• 6:48
  and and um
• 6:49
  there's some other qualifying questions in there
• 6:51
  for that and I
• 6:54
  and I don't mean Jewish religion
• 6:55
  I mean Jewish heritage um
• 6:57
  genetically Jewish not um
• 6:59
  just you decided to be Jewish uh
• 7:02
  because there is um
• 7:05
  there seems to be an awful
• 7:06
  awfully high number of of people that are
• 7:09
  have a Jewish ancestry
• 7:11
  that's fascinating mm hmm
• 7:14
  so when we were developing the registry
• 7:15
  and all the registry questions
• 7:16
  we were asking people you know
• 7:18
  tell us about you tell us about what you think what
• 7:20
  what is important
• 7:22
  and that's how those questions were developed
• 7:23
  so that's why they're there
• 7:25
  like the military there's a lot of
• 7:27
  a lot of people looking into the military right now
• 7:29
  because
• 7:30
  the military people are subject to so many chemicals
• 7:34
  and and um and immunizations
• 7:39
  that those are
• 7:41
  yeah so there's
• 7:42
  there's a lot of things that they are looking at
• 7:45
  there was just a study presented at ASCO
• 7:47
  that our registry participated in
• 7:49
  it was with Melanoma Research Alliance
• 7:51
  and they were looking at um
• 7:54
  the rare melanomas
• 7:56
  and service related ailments and injuries
• 7:59
  and they found some interesting data
• 8:01
  so they're gonna keep following it
• 8:03
  but if everybody that's ever had military service
• 8:05
  was in the registry too
• 8:06
  we might be able to find some correlation there as well
• 8:09
  so you know
• 8:09
  you just
• 8:10
  you just never know where things are gonna lead
• 8:13
  absolutely I think that makes a lot of sense
• 8:16
  okay so back to you
• 8:19
  so in the beginning there was the sarcoidosis
• 8:22
  fibromyalgia we're not really sure
• 8:24
  cluster of autoimmunes we could call it
• 8:26
  and then um
• 8:28
  let's go forward what next
• 8:31
  so in about 2,015
• 8:34
  um this is kind of an interesting correlation
• 8:37
  but I was we had talked before that I had a
• 8:41
  I had previous kidney cancer in
• 8:43
  when I was 45 in 2,006
• 8:47
  when I had the my kidney removed
• 8:49
  I also had a total hysterectomy at the same time
• 8:52
  when they did that of course
• 8:53
  they took it my everything
• 8:55
  so I had to be on estrogen
• 8:56
  so I was on estrogen from 45 to 55
• 9:00
  at 55 my doctor said
• 9:02
  we need to get you off estrogen
• 9:04
  you need to go through menopause
• 9:06
  and I was like I don't wanna do that
• 9:08
  but I he wouldn't prescribe it
• 9:09
  so what choice did I have
• 9:11
  I went off and everything went crazy
• 9:15
  I ended up with um
• 9:18
  psoriasis everywhere on my legs
• 9:20
  on my arms in my head on
• 9:22
  I mean it was just my stomach my
• 9:25
  the trunk of my body was covered in it
• 9:27
  and then psoriatic arthritis flared
• 9:32
  and it turns out
• 9:33
  I probably had psoriatic arthritis for a long time
• 9:36
  but it was under control but one of
• 9:39
  but the estrogen was kind of helping
• 9:41
  keeping things stable
• 9:43
  so I did a big health crash in 2,015
• 9:47
  um I was also going through the divorce and all that
• 9:49
  so I was under a lot of
• 9:51
  a lot of stress taking care of my mother and
• 9:53
  you know things that also contributed to that
• 9:57
  but my doctor thinks that taking me off the estrogen
• 10:01
  caused this big spike in the psoriasis
• 10:04
  so now I have psoriatic arthritis
• 10:07
  which is affected my feet
• 10:08
  my ability to walk my hands
• 10:11
  um
• 10:13
  my knees my uh
• 10:15
  my ankles are okay but big joints in my body
• 10:17
  my hands are just a mess and I've lost strength
• 10:20
  can't can't open things
• 10:22
  there's a lot of stuff I just can't do
• 10:23
  that I used to do and
• 10:28
  talking to other people that have ocular melanoma
• 10:30
  they have psoriatic arthritis
• 10:31
  they're kind of my age they kind of find the same
• 10:34
  similar symptoms so um
• 10:37
  I finally talked them into putting me back on estrogen
• 10:40
  and it calmed it a little bit
• 10:42
  but it didn't calm it like it had been before
• 10:44
  so now the really crazy part is most of the
• 10:52
  treatments for psoriatic arthritis and psoriasis
• 10:56
  are auto suppressants
• 10:59
  I can't take them
• 11:00
  because if you suppress my immune system
• 11:03
  they were worried that my ocular melanoma
• 11:06
  would metastasize
• 11:07
  so I had to kind of do this delicate dance of try this
• 11:10
  try that
• 11:11
  they didn't want to suppress my immune system too much
• 11:14
  and of course you know
• 11:16
  they got I was able to be kind of stable
• 11:18
  but I wasn't good I wasn't back to my old self
• 11:22
  so they weren't able to give me the drugs
• 11:25
  that were helping so many people
• 11:26
  because if they did
• 11:29
  there's a good chance I would have metastasized
• 11:30
  and I didn't want that
• 11:33
  so then going forward
• 11:35
  they've come out with a new set of drugs
• 11:37
  that are not so much of a immune suppressant
• 11:41
  they just redo your immune system
• 11:44
  somehow that I don't understand
• 11:45
  so I'm on a drug called Skyrizi now
• 11:48
  um I was on Methotrexate
• 11:50
  I couldn't handle that at all
• 11:52
  um it caused me great stomach upset
• 11:54
  and I couldn't eat and I couldn't get out of bed
• 11:56
  it was horrible um
• 11:58
  but it they you
• 11:59
  I think a lot of people don't understand
• 12:01
  the side effects of medications
• 12:02
  but also how bad autoimmunes can be
• 12:05
  cause they can be debilitating
• 12:07
  so I'm I'm on Skyrizi now
• 12:10
  and I'm able to do better
• 12:11
  I can walk better now but my feet are so um
• 12:16
  deformed I guess is the right word to say
• 12:18
  from the arthritis that it make
• 12:20
  it still makes walking difficult
• 12:22
  yeah that's tough
• 12:23
  and then you can't see on top of it
• 12:25
  this is why she falls down
• 12:32
  yeah I'm very accident prone
• 12:34
  wrap me in bubble wrap yeah
• 12:36
  luckily I have good strong bones so yay
• 12:39
  well when I
• 12:41
  for those that that saw
• 12:42
  where I got hit on the head with a falling tree
• 12:45
  because I wasn't paying attention
• 12:46
  and I turned my blind side
• 12:48
  to somebody cutting down a tree
• 12:49
  which was just ridiculous on my part
• 12:52
  I was in the doctors they
• 12:54
  they gave did a CT scan
• 12:55
  they checked my head and they said
• 12:57
  your head's fine you're fine
• 12:58
  no concussion you're good
• 13:00
  but you have a lot of arthritis in your back
• 13:05
  oh and I said yeah
• 13:07
  I know she goes
• 13:08
  it's a lot like yeah
• 13:10
  I know
• 13:11
  so you know
• 13:12
  I just go in for a head CT and then they're like oh
• 13:14
  your back is a mess and yeah
• 13:16
  I know so I just
• 13:17
  it's like it's everywhere
• 13:18
  and you just every time I get a test
• 13:20
  they find it's creeped up more
• 13:22
  and you know it's cause it is in my spine a lot
• 13:24
  and luckily I can still stay upright and walk
• 13:26
  and I'm not having a lot of pain
• 13:28
  but it's a it's a
• 13:31
  it's a delicate balance
• 13:32
  trying to balance your ocular melanoma and then balance
• 13:38
  another element that you might have
• 13:42
  cause sometimes the the treatments just don't mesh
• 13:45
  one treatment negates another treatment
• 13:47
  right so
• 13:49
  and you said you do find
• 13:50
  a lot of people in the community have autoimmunes
• 13:52
  and then I'm sure other ailments as well
• 13:55
  so this comes up a lot I would guess
• 13:58
  uh huh well
• 13:59
  there's also been a lot of people
• 14:00
  that have kidney cancer on top
• 14:03
  which is normally goes with the BAP1 mutation
• 14:07
  but there's some of us that don't have a BAP1 mutation
• 14:10
  but we have kidney cancer and ocular
• 14:12
  excuse me and ocular melanoma
• 14:14
  is it a coincidence
• 14:15
  is there something they just haven't found yet
• 14:17
  I mean I had a really interesting conversation
• 14:19
  with a gentleman that has the BAP1 mutation
• 14:22
  and he's like I think you have it
• 14:24
  but I don't but
• 14:25
  maybe there's another mutation
• 14:27
  that they just haven't discovered yet
• 14:28
  that might correlate the two
• 14:30
  because you gotta think back
• 14:34
  the genetics are really new
• 14:36
  you know just in since like
• 14:37
  the 2000s
• 14:39
  is when the genetics really started getting looked at
• 14:42
  and they're constantly finding new things
• 14:44
  so we still don't really know all of it
• 14:46
  they're gonna they
• 14:48
  every time they do more research
• 14:49
  they find oh hey
• 14:50
  maybe this is something maybe that is something
• 14:52
  yeah so if somebody's newly diagnosed and they're like
• 14:57
  oh man I got all this stuff going on
• 15:01
  do you have any tips
• 15:02
  or words of wisdom that you could share
• 15:06
  talk to your doctor and be honest
• 15:08
  that's the big thing don't be brave
• 15:12
  that was probably one of my biggest things I didn't do
• 15:16
  is I wasn't honest about how much I was hurting
• 15:19
  I wasn't honest about what was going on
• 15:21
  I just tried to soldier through um
• 15:25
  I wish that I would have been more honest
• 15:27
  cause every time I'd go into the oncologist
• 15:29
  they'd say how's your pain
• 15:30
  and I would say well
• 15:32
  you know it's just my feet
• 15:34
  and it's about a this
• 15:35
  but the problem with chronic pain
• 15:37
  and there's a lot of people
• 15:38
  that do have different types of chronic pain
• 15:40
  is you forget how much pain you really have
• 15:43
  which seems silly but when you live with it every day
• 15:46
  you get kind of numb to it
• 15:48
  so when people say what's your pain level today
• 15:50
  I actually have to stop and think
• 15:52
  because when you're when you have a lot of pain
• 15:56
  you still need to get through a day
• 15:58
  so you just kind of push it back
• 16:00
  and you just go forward and you just deal
• 16:02
  so sometimes you gotta think about
• 16:04
  oh yeah
• 16:04
  today's about an 8 but I used to tell him
• 16:06
  my feet hurt so bad I went to the emergency room
• 16:09
  my feet hurt oh
• 16:11
  you have plantar fasciitis
• 16:13
  you know I went to a
• 16:14
  I went to a podiatrist they're like oh
• 16:16
  try insoles nobody really put it together
• 16:19
  that it was psoriatic arthritis
• 16:21
  then I ended up having neuropathy
• 16:23
  I have a terrible neuropathy in my legs
• 16:25
  they don't know why but it started in my feet
• 16:27
  and went all the way up to mid thigh
• 16:29
  so this I'm laying on the table
• 16:32
  and they're doing a nerve conduction test
• 16:35
  and he says oh
• 16:36
  the muscles in your foot have atrophied
• 16:38
  you know which means they don't work anymore
• 16:42
  so I'm like oh
• 16:42
  that's great then as they're going up my leg
• 16:45
  they're like that's weird
• 16:46
  because this nerve shouldn't hurt
• 16:49
  cause it sends like a pulse through it
• 16:50
  and if if your nerve endings are working right
• 16:52
  you get this electric pulse
• 16:55
  he said this is the one that most people don't feel
• 16:57
  and then the one that most people do feel
• 16:59
  I didn't feel
• 17:00
  and they couldn't figure it out
• 17:01
  they're like we don't know why you have neuropathy
• 17:03
  we don't know where it came from
• 17:05
  I'm not diabetic you know
• 17:07
  so they're so
• 17:09
  there's all this mystery of what causes what and what
• 17:14
  you know you just don't know what to do with it all
• 17:16
  because there's so much
• 17:18
  so that's another reason I fall a lot
• 17:21
  cause I can't feel my feet
• 17:22
  I can feel the pain in my feet and my feet don't work
• 17:25
  but I can't really feel so it's just a mess
• 17:29
  yeah that would be very hard to navigate
• 17:32
  but
• 17:32
  I didn't talk to anybody about it until it got so bad
• 17:36
  I just happened to mention it to one doctor
• 17:38
  just by chance and they got the
• 17:40
  they sent me in for the nerve study um
• 17:43
  and then they sent me in
• 17:44
  and I was getting injections in my back
• 17:46
  and that wasn't working and
• 17:47
  you know so they were
• 17:48
  once I was honest with them
• 17:50
  they started giving me things to help and to treat
• 17:52
  and instead of being the you know
• 17:55
  soldier on person and just not say anything
• 17:58
  cause you feel like a whiner
• 17:59
  you feel like when you go into the doctor
• 18:00
  you're just always whining
• 18:02
  you know it's like
• 18:03
  oh well
• 18:03
  this happened well this
• 18:05
  you know and some doctors are really great
• 18:07
  and they're like well
• 18:07
  let's talk more about that
• 18:09
  and other doctors are like
• 18:10
  oh okay
• 18:10
  never mind you know
• 18:11
  so it just depends on your physician too
• 18:13
  but I have a really good physician now who cares
• 18:16
  and she asked me tell me out
• 18:17
  tell me the truth you know
• 18:19
  or how are you doing
• 18:20
  and sometimes it's hard to really tell the truth
• 18:23
  how you're doing
• 18:25
  yeah for sure
• 18:26
  and like you said part of its perspective
• 18:29
  you know
• 18:30
  if you live with pain a lot and you get used to it
• 18:32
  you think it's not that bad
• 18:33
  somebody else might be in your body and be like
• 18:35
  aw yeah exactly exactly
• 18:38
  and I do have a high pain tolerance too
• 18:40
  which is helpful but
• 18:41
  but it's it's
• 18:42
  it's a double edge cause I have a high pain tolerance
• 18:45
  but cause I've lived with pain for so long
• 18:49
  but then when I get real pain
• 18:51
  I don't do anything about it because
• 18:56
  I'm used to it I guess is the right word
• 18:58
  word to say yeah
• 19:00
  you need like a handicap on your pain score
• 19:03
  like whatever you think you're at
• 19:04
  add three or four exactly right right exactly
• 19:08
  but you know
• 19:09
  so there's
• 19:10
  so be honest would be the first thing I would say
• 19:12
  and the second thing is
• 19:13
  is stop and take care of yourself
• 19:15
  because I did not do that
• 19:17
  and I wish I would have stopped more
• 19:19
  and taken better care of me
• 19:22
  instead of taking care of everybody else
• 19:24
  and not myself
• 19:27
  um
• 19:28
  cause there's a lot of you know
• 19:30
  emotional stuff that you carry around uh
• 19:32
  in your life and that does affect your health
• 19:35
  and I wish I would have paid better attention
• 19:38
  to that so that I would have not felt guilty
• 19:42
  about doing things for myself and taking care of me
• 19:45
  yeah I mean
• 19:45
  that's really important
• 19:47
  and I think a lot of people don't
• 19:49
  and I think it's men and women too
• 19:51
  I think a lot of people will put that on women
• 19:52
  cause we're kind of like you know
• 19:54
  the mothers of the you know
• 19:55
  the caretakers of the children and stuff
• 19:56
  but men they are just as bad
• 19:59
  they like to soldier on and I'm fine
• 20:01
  so it might even be for different reasons
• 20:03
  but I think everybody does it
• 20:06
  well that's true
• 20:07
  because they feel like they can't complain
• 20:09
  you know
• 20:09
  they've gotta be tough and they gotta just go forward
• 20:12
  and and that's not necessarily the right way to be
• 20:15
  and they don't like to go to the doctor
• 20:16
  and so then they just don't
• 20:18
  then if they go to the doctor
• 20:19
  they don't want to say anything
• 20:20
  because they don't want to look weak or
• 20:22
  I mean I don't know their reasoning
• 20:24
  but that's what I've heard people say that
• 20:26
  that they that
• 20:27
  you know they hate going to the doctor so much
• 20:28
  they just go for whatever they have to go for
• 20:30
  and then that's it
• 20:33
  it is it's unfortunate
• 20:34
  but
• 20:35
  right yeah
• 20:37
  and again like you said
• 20:37
  with the pain tolerance in the perspective if
• 20:40
  if you've dealt with it your whole life
• 20:42
  you might think it's really not a big deal
• 20:44
  and then you tell somebody
• 20:45
  and they're like wait no
• 20:46
  that's not normal and you think
• 20:47
  wait what
• 20:49
  not everybody has this right
• 20:52
  well when I was a kid
• 20:54
  going way way back
• 20:55
  when I was a teenager
• 20:58
  I was having issues with my joints swelling up
• 21:00
  and they couldn't figure out why
• 21:02
  so I went in I had a bunch of testing
• 21:04
  and they my um
• 21:06
  markers for arthritis were high
• 21:10
  and so they said I had juvenile rheumatoid arthritis
• 21:13
  and at that time in the 70s
• 21:16
  there wasn't anything for that
• 21:18
  um and then that was my diagnosis
• 21:21
  and that's what I wrote on my chart
• 21:24
  but then I went when I was older
• 21:26
  and I went to a family practice doctor
• 21:28
  and I had had children
• 21:30
  um and the
• 21:31
  this doctor actually said to me
• 21:33
  there's no way you have rheumatoid arthritis
• 21:36
  or your markers would be higher than they are right now
• 21:39
  but they were still high
• 21:41
  so
• 21:43
  you get dismissed a lot when you
• 21:46
  when you have a lot of ailments
• 21:49
  there's nothing more well
• 21:50
  to me it's humiliating
• 21:52
  I feel horrible when I go into the doctor
• 21:54
  and they're like wow
• 21:56
  you got a lot going on and it's like
• 22:00
  yeah okay
• 22:01
  but what do I do about it
• 22:02
  and they kind of make you feel guilty
• 22:05
  about having so many things
• 22:07
  and then you think'cause this is another problem
• 22:10
  is that are they believing me
• 22:12
  I had a doctor that did not believe me
• 22:14
  and thought I was making it up
• 22:17
  sent me to my gynecologist for hormone
• 22:20
  a hormone check
• 22:22
  said I was having um
• 22:25
  low hormones and I was um
• 22:27
  in hysteria that's what he called
• 22:29
  I was in hysteria wow
• 22:31
  and I'm like no
• 22:32
  there's something really wrong here
• 22:33
  this is not hormonal but I went to my gynecologist
• 22:36
  and luckily I got a really great guy
• 22:38
  and he sat there and he talked to me
• 22:40
  he said there's nothing wrong with your hormones
• 22:42
  and I'm bawling because I feel so
• 22:45
  I feel ashamed I feel humiliated
• 22:47
  I feel not listened to I feel like
• 22:49
  am I going crazy cause you do that
• 22:51
  you're like am I going crazy
• 22:52
  is this really happening
• 22:54
  and he ran some tests he said let's
• 22:57
  cause I was having really bad abdominal pain
• 23:00
  and he said let's see if you had a kidney stone
• 23:02
  let's just look at everything
• 23:03
  and he did a bladder and looked at that
• 23:05
  that looked good he looked
• 23:06
  you know had all
• 23:08
  you know gynecological testing
• 23:09
  all that looked fine and then when they did the
• 23:13
  when they did the ultrasound
• 23:14
  to see if I had a kidney stone
• 23:16
  that's when they found
• 23:17
  a 4 centimeter tumor on my kidney
• 23:21
  and they said that was the cause of all the pain
• 23:24
  so here I was going to this doctor for almost a year
• 23:27
  that was basically not taking me seriously
• 23:30
  while I had this tumor on my kidney growing
• 23:33
  and he was dismissing the pain
• 23:36
  but when the tumor wasn't painful
• 23:39
  but it was pressing on things that were painful
• 23:41
  and then they thought it was shedding
• 23:43
  and it was irritating my bladder
• 23:45
  and as soon as as soon as I got my kidney out
• 23:48
  that pain went away I never had it again
• 23:50
  but I had to deal with so I call it
• 23:54
  I'm just gonna say it abuse
• 23:55
  from a physician
• 23:57
  who refused to look further into my care
• 23:59
  and told me basically
• 24:00
  I was hysterical from low hormones
• 24:02
  and I was making it all up
• 24:04
  he said he could look in my eye
• 24:05
  and tell me that I wasn't really sick
• 24:07
  what he said that
• 24:09
  yeah how does that work
• 24:11
  he thought he has some magic
• 24:14
  magic vision into my eyes
• 24:15
  I don't know wow
• 24:17
  like a human lie detector
• 24:19
  yeah exactly right
• 24:21
  so so when you're going
• 24:22
  when you're going through this
• 24:24
  it's hard because there's
• 24:25
  there's so much and you
• 24:28
  you're afraid to say something to your physician
• 24:30
  because you don't want to be judged
• 24:33
  yeah and
• 24:33
  and there's a lot of that
• 24:34
  I think that's a good time to make the point of
• 24:39
  seek a second opinion if you ever want to like
• 24:42
  you don't even have to have a reason
• 24:43
  if you just want it do it
• 24:45
  because you don't have a loyalty to anyone but yourself
• 24:49
  in this
• 24:51
  I had a uh
• 24:53
  HMO in California that I would
• 24:55
  will not mention
• 24:56
  but I was not able to get a different doctor
• 24:59
  I had you go in you sign up
• 25:00
  you get one doctor I
• 25:03
  I complained to the chief of staff
• 25:05
  and they wouldn't move me
• 25:07
  but they sent me to the
• 25:09
  to my gynecologist that they could do
• 25:11
  and he's the one that saved me really
• 25:13
  cause had not
• 25:14
  I would have probably just thought I was crazy
• 25:16
  and this tumor would have kept growing
• 25:18
  and then who knows what would have happened
• 25:20
  but luckily I had a compassionate doctor
• 25:23
  but
• 25:23
  that's where it goes back to advocating for yourself
• 25:26
  we don't advocate for ourselves enough
• 25:28
  and I think that's another message I would tell people
• 25:31
  advocate ask questions
• 25:33
  demand answers it's
• 25:36
  they should
• 25:36
  you shouldn't ever have a medical professional
• 25:39
  make you feel like you can't speak
• 25:41
  or that you're wrong
• 25:42
  or that you're not feeling what you're feeling
• 25:46
  definitely
• 25:47
  yeah and
• 25:48
  you know
• 25:49
  if you can't get another doctor
• 25:51
  like you were just saying
• 25:53
  but you got a gynecologist
• 25:54
  that's a good thing to keep in the back of your mind
• 25:57
  maybe even if they won't give you another primary
• 26:00
  maybe you could find a specialist
• 26:01
  and even if you're a male
• 26:02
  maybe you could find a you know
• 26:04
  an endocrinologist or anyone else that
• 26:07
  that you think could help you
• 26:08
  that they could refer you out
• 26:10
  just
• 26:10
  a second opinion from a specialist could be the key
• 26:14
  like in your situation
• 26:17
  he gave me an antidepressant and sent me
• 26:20
  to a psychiatrist
• 26:21
  before he would send me to my gynecologist
• 26:24
  you know they
• 26:25
  everyone loves an antidepressant these days
• 26:28
  which in some cases they're wonderful
• 26:30
  but it's not the blanket
• 26:32
  cure all that they would like it to be
• 26:34
  but I didn't I didn't need one
• 26:36
  I honestly didn't need it
• 26:37
  because that wasn't the problem
• 26:39
  it wasn't I wasn't making it up
• 26:41
  right but yeah exactly
• 26:42
  that was not the problem
• 26:43
  and that wouldn't have helped you at all
• 26:46
  no it didn't
• 26:47
  so here I was taking an antibiotic for like two
• 26:49
  I mean I'm sorry
• 26:50
  an antidepressant for two years that I didn't even need
• 26:53
  it's like well
• 26:54
  what did that do to my system
• 26:56
  yeah absolutely
• 26:58
  well cause there's a whole host of um
• 27:00
  side effect warnings that come with those
• 27:03
  yeah exactly
• 27:04
  luckily luckily
• 27:05
  we don't think anything came from that
• 27:07
  but you never know
• 27:09
  how do you know
• 27:10
  of all the drugs that I've had in my lifetime
• 27:12
  it would be hard to know if anything is
• 27:15
  cause you go to the doctor
• 27:17
  they just throw a drug at you
• 27:18
  it's like well
• 27:18
  let's talk about this you know
• 27:21
  yeah when my son was 5
• 27:24
  we took him to a neurologist
• 27:26
  cause we were curious if he had some spectrum disorder
• 27:30
  Asperger's syndrome kind of things going on
• 27:32
  and they told us that he had anxiety
• 27:37
  and wrote a prescription for an antidepressant
• 27:39
  for a five year old and we didn't fill it
• 27:42
  we did some other
• 27:43
  like occupational therapy and other things and
• 27:49
  later he was in school
• 27:51
  and I wanted to get an IEP
• 27:53
  and so I called the neurologist
• 27:55
  and I said hey
• 27:55
  can you send me a copy of the diagnosis
• 27:58
  they said you don't have a diagnosis for him
• 28:00
  and I said you literally told me he has anxiety
• 28:03
  and wrote me a prescription for an antidepressant
• 28:06
  oh but we didn't diagnose him
• 28:08
  I said how in the world are you medicating a kid
• 28:12
  with no diagnosis like it make
• 28:13
  and he was five I'm so glad that we didn't do
• 28:16
  and you know
• 28:17
  to each their own
• 28:17
  there's a lot of kids that it really helps them
• 28:19
  he didn't need it
• 28:20
  and I'm glad we didn't do it because he didn't need it
• 28:23
  but just
• 28:24
  the fact that they were so quick to give it to him
• 28:26
  after one visit with no diagnosis
• 28:29
  that's my point not the kids shouldn't take it
• 28:31
  just that
• 28:32
  I think with children it's especially difficult
• 28:35
  to get physicians to pay attention
• 28:37
  to them and what's really going on with them
• 28:40
  you know cause I remember
• 28:40
  when you were going through all that with Mason
• 28:42
  how frustrating it was for you and him both
• 28:45
  you know the family
• 28:46
  you know it was a big
• 28:48
  it was a big struggle for everybody
• 28:50
  and to have doctors just be so lax about it it's
• 28:53
  but that that's our healthcare system in America
• 28:56
  it's very sad yeah
• 28:58
  and because they chose not to give a diagnosis
• 29:00
  we got no help at school cause he had no diagnosis
• 29:04
  but yeah let's medicate him
• 29:06
  that and that's my only point with it
• 29:08
  is that
• 29:09
  they're just so quick to prescribe the antidepressants
• 29:11
  without really seeing if it's needed
• 29:13
  cause when it is needed it's important
• 29:15
  and it's a great to have it's a good tool
• 29:18
  but you can't just give it to everybody as a blanket
• 29:22
  I'm not a depressed person
• 29:23
  I'm usually very upbeat and very positive
• 29:26
  unless something's going on that would
• 29:28
  everybody would feel
• 29:30
  maybe not the greatest about what's going on
• 29:32
  but in general I'm a very upbeat
• 29:35
  positive person I'm not a depressed
• 29:37
  depressed person who can't get out of bed
• 29:40
  I'm not somebody that just mopes around all the time
• 29:42
  you know that I was always very active
• 29:45
  yeah during this time
• 29:46
  I was getting up every day
• 29:47
  I was walking three miles a day
• 29:49
  you know I mean
• 29:50
  I was an active person
• 29:52
  so for him to think that I was just depressed
• 29:54
  or I had just some kind of a psychological issue
• 29:57
  because I was having pain
• 29:59
  he couldn't figure out where it came from
• 30:01
  you know that's on him
• 30:02
  not on me but
• 30:03
  but you take it on you you take it as you
• 30:06
  you second guess yourself
• 30:07
  am I crazy am I really feeling this
• 30:10
  is this really happening
• 30:13
  yep yeah
• 30:15
  and and we shouldn't be doing that to ourselves
• 30:17
  we should be confident in what our bodies telling us
• 30:20
  cause we need to listen to our bodies more
• 30:23
  and I don't think I I
• 30:26
  sometimes
• 30:27
  we don't really know what our body is telling us
• 30:28
  but when something's wrong
• 30:29
  we should know that something's wrong
• 30:31
  and a doctor should sit down and listen
• 30:33
  I completely agree like you would have
• 30:36
  you would have never been like hey
• 30:37
  I'm having some pain possibly I have a tumor
• 30:39
  but nobody but that's his job
• 30:43
  to go figure out what is happening
• 30:45
  and luckily
• 30:46
  you were able to find it before it got out of control
• 30:49
  thankfully yeah yeah
• 30:51
  I mean I mean
• 30:52
  I was having weird stuff happening
• 30:54
  but um
• 30:55
  it wasn't all from the kidney cancer the
• 30:57
  but at the same time it was aggravating things
• 31:00
  you know there was just all this aggravation going on
• 31:03
  and I got rid of two parts of my body
• 31:05
  and
• 31:06
  um I'm almost hollow inside now
• 31:09
  I've had so many things taken out
• 31:12
  but I'm okay you know
• 31:15
  you can't look at it you
• 31:16
  I know some people dwell on it
• 31:18
  oh I had this removed
• 31:19
  oh I had that removed
• 31:21
  I was grateful and
• 31:22
  I'm grateful that they got everything out
• 31:24
  that was causing me um
• 31:25
  issues and I was able to go on and live a good
• 31:28
  good productive life
• 31:30
  had I mourned the loss of
• 31:33
  you know a kidney
• 31:34
  a gallbladder an appendix
• 31:36
  a hysterectomy
• 31:38
  that wouldn't have been very good for me
• 31:39
  so I was a you know
• 31:40
  I didn't ever have that but
• 31:42
  I do know that
• 31:43
  some people do mourn when they have something removed
• 31:47
  and that's that's a big deal
• 31:49
  I'm not making light of it
• 31:51
  cause it's not it's not a
• 31:54
  it's not a easy thing to
• 31:56
  to have organs removed that you think your body needs
• 32:00
  yeah but if it's posing a risk
• 32:03
  then thankfully they can find it in time and remove it
• 32:07
  so it is something to be grateful for
• 32:09
  but it is a perspective
• 32:10
  that you have to wrap your mind around
• 32:12
  and give it time to sink in
• 32:16
  yeah well
• 32:17
  in just around that time 2000
• 32:21
  I guess it was before 2,015
• 32:24
  um I had a
• 32:25
  I had a growth on my hand
• 32:27
  and it was painful
• 32:28
  and we couldn't figure out what it was
• 32:30
  you know and they kept saying it was a
• 32:33
  oh I can't remember the word
• 32:35
  like a keratinosis or something like that
• 32:37
  where it's just a little growth
• 32:39
  and they were sure oh it's nothing
• 32:41
  we just you know
• 32:42
  we're just gonna burn it off
• 32:44
  well the dermatologist came in
• 32:46
  and actually took a biopsy of it
• 32:48
  and sent it off but they were sure it was nothing
• 32:51
  turned out I had squamous cell cancer on my hand
• 32:53
  and it had because they wouldn't
• 32:56
  it wasn't treated it was just burned here
• 32:58
  burned there it wasn't ever really treated
• 33:00
  it got bigger and it got deeper
• 33:01
  so then I had to have mohs surgery on my hand
• 33:03
  they took out a big chunk of my
• 33:05
  of the skin on the top of my hand
• 33:07
  um to get all of this squamous cell out of
• 33:10
  so that cause squamous cell's common
• 33:13
  and it can be nothing but it's never nothing
• 33:16
  if it's left to go on you know
• 33:18
  it can it can spread
• 33:19
  and people do die from squamous cell
• 33:23
  so there's a lot of times when people will
• 33:25
  you know you go to a physician
• 33:26
  they look at you oh
• 33:26
  it's this oh
• 33:27
  it's that
• 33:28
  and that's why we always say that we're zebras
• 33:30
  not horses because if you look for the obvious
• 33:33
  it sometimes doesn't doesn't match what we are
• 33:36
  you got you need to find a physician
• 33:37
  who will look a little deeper
• 33:39
  and have they just kept freezing that
• 33:41
  and not done a biopsy who knows
• 33:43
  but luckily
• 33:44
  I had a different dermatologist come in that day
• 33:46
  and say let's biopsy this
• 33:48
  and they found squamous cell
• 33:49
  and they're like oh
• 33:50
  we need to get that out of there now
• 33:53
  so it wasn't just a little a little freezing thing
• 33:57
  yeah so once again
• 33:59
  the doctor made all the difference
• 34:01
  mm hmm
• 34:03
  yeah so
• 34:03
  you know when you have
• 34:04
  when you have so many things going on
• 34:07
  you just need to be an advocate for yourself
• 34:08
  so that people will listen
• 34:10
  but I will say
• 34:10
  I did not think that that was squamous cell
• 34:12
  but I was tired of every time I touched my hand
• 34:15
  it hurt and when I did research online
• 34:18
  you know Doctor Google
• 34:19
  everybody loves Doctor Google
• 34:21
  it said if for one of those keratosis
• 34:24
  I think it's how you say it
• 34:25
  they don't hurt they're not painful
• 34:27
  and that mine was painful
• 34:30
  um and
• 34:32
  luckily I had a doctor that finally listened and said
• 34:35
  okay no more burning
• 34:35
  let's do a biopsy and here we go
• 34:39
  yeah
• 34:41
  craziness alright
• 34:42
  before we wrap up this episode
• 34:44
  is there anything else you want to touch on
• 34:46
  on this topic
• 34:48
  just to make sure you're taking care of yourself
• 34:50
  your whole medical record
• 34:51
  don't get so deeply involved in your ocular melanoma
• 34:55
  that you let other elements go
• 34:58
  don't think that you don't need to worry about them
• 35:01
  cause you need your overall health
• 35:03
  and if you have something else happening
• 35:05
  at the same time
• 35:07
  make sure that you're getting a good doctor
• 35:09
  to give you good care and you are taking care of you
• 35:12
  and if that means cutting back on what you're doing
• 35:14
  don't feel guilty about it
• 35:16
  cause you know we can only push our bodies so far
• 35:19
  until they start saying no more
• 35:22
  so listen to your body and get a good doctor and and
• 35:26
  and advocate for yourself in all areas
• 35:28
  not just your ocular melanoma
• 35:31
  absolutely wise words
• 35:33
  alright everyone
• 35:34
  please like this video and leave us a comment
• 35:38
  let us know what kind of ailments are you dealing with
• 35:41
  on top of your ocular melanoma
• 35:43
  and how are you managing it
• 35:44
  how's it going um
• 35:45
  if you have not registered
• 35:47
  please
• 35:48
  please join the registry and fill out the survey
• 35:50
  so that we can figure out
• 35:52
  where there might be a correlation
• 35:53
  that we're not tracking yet
• 35:55
  and we can get the researchers attention
• 35:57
  so they can put the studies into the issues
• 36:00
  that might actually get us closer to a cure
• 36:03
  so please join the registry
• 36:05
  there's also the biobank
• 36:06
  if you're gonna have a biopsy coming up
• 36:08
  please join the biobank um
• 36:11
  there's a lot they can do with that
• 36:13
  and then go to our website
• 36:15
  ACureInSight.org there is a button at the top
• 36:18
  to subscribe to our newsletter
• 36:19
  we send it out once a month
• 36:20
  and occasional emails
• 36:22
  if there's something very timely that is important
• 36:25
  and there's a ton of resources on our website
• 36:27
  there's the physician finder
• 36:28
  you can join the Cure Companions program
• 36:31
  there's a Tuesday Night Zoom every Tuesday um
• 36:35
  7 PM Eastern is it
• 36:37
  uh huh yes
• 36:38
  7 PM Eastern um
• 36:40
  there's all just all kinds of things
• 36:41
  so check out our website
• 36:43
  if you can't find what you're looking for
• 36:45
  let us know because we would love to add that for you
• 36:47
  and if you're newly diagnosed
• 36:49
  and you're just joining the party
• 36:51
  check out the new patient packet
• 36:53
  you can get one for free
• 36:55
  there's a lot of cool stuff in there
• 36:56
  we'd love to send you one
• 36:58
  and join the Facebook groups
• 36:59
  there's all kinds of Facebook groups
• 37:01
  if you're new and you want to connect with people
• 37:03
  also
• 37:04
  our patient meeting is coming up October 2nd and 3rd
• 37:07
  in Dallas this year 2026
• 37:10
  we would love to see you there
• 37:11
  it's a great way to not only meet doctors and pharma
• 37:15
  and learn but connect with other patients
• 37:18
  and make some lifelong friendships
• 37:19
  so if you are new to the community
• 37:21
  and you want to meet some people
• 37:22
  hopefully we'll see you in October
• 37:24
  and if you're a veteran
• 37:25
  we look forward to seeing you again
• 37:27
  and until next week we hope everyone has a wonderful
• 37:30
  safe and healthy week