Latest / The Eye Believe Podcast / "My Ocular Melanoma Journey 💪: Self-Advocacy with Karen Long #OcularMelanoma #SelfAdvocacy"

Transcript

"My Ocular Melanoma Journey 💪: Self-Advocacy with Karen Long #OcularMelanoma #SelfAdvocacy" · The Eye Believe Podcast

0:04
Okay,
0:04
guys,
0:04
welcome
0:05
back to
0:05
the eye
0:05
believe
0:06
podcast.
0:06
I'm
0:06
your host
0:07
danet
0:07
Peterson,
0:07
and I'm
0:08
here with
0:08
patient
0:09
Karen
0:09
Long from
0:10
Billings,
0:10
Billings,
0:11
Montana.
0:12
And today
0:12
you guys
0:12
we're
0:12
going
0:13
to talk
0:13
about
0:13
the problem
0:14
of
0:14
how do you even
0:15
know what
0:15
questions
0:16
to ask
0:17
when you
0:18
don't
0:18
even
0:18
understand
0:19
the
0:19
cancer
0:19
that
0:19
you've
0:20
been
0:20
diagnosed
0:20
with.
0:20
Right.
0:21
So we're
0:22
talking
0:22
to Karen,
0:23
who
0:23
is also
0:23
a
0:23
patient.
0:24
She's
0:24
going to
0:24
tell us
0:25
a little
0:25
bit more
0:25
about her
0:25
story.
0:26
But
0:26
first
0:26
off,
0:26
Karen,
0:27
you're in
0:27
Billings,
0:28
Montana,
0:29
so I can
0:29
only
0:29
imagine
0:30
this
0:30
is
0:30
kind of a
0:30
hard
0:31
place
0:31
to get
0:31
treatment
0:32
for
0:32
ocular
0:32
melanoma.
0:33
do you want
0:33
to just
0:34
tell us
0:34
a
0:34
little bit
0:34
about.
0:35
I guess,
0:35
let's
0:36
just
0:36
hear.
0:36
How many
0:37
places
0:37
have you
0:37
gone
0:38
to for
0:38
care
0:38
so far?
0:40
Well,
0:40
thank
0:40
you,
0:40
danet for
0:41
having me
0:41
on.
0:42
I was
0:43
diagnosed
0:43
in 2018,
0:45
and, when
0:46
my retinologist
0:47
told me
0:48
that
0:48
I had
0:49
ocular
0:49
melanoma,
0:50
I had no idea
0:51
what
0:51
it was.
0:52
And,
0:53
he
0:53
started
0:54
to
0:54
describe to me
0:55
what kind of
0:56
a procedure
0:57
that I
0:57
would be
0:57
going
0:58
through.
0:58
At that
0:58
point.
0:59
He was
0:59
describing
1:00
brachytherapy,
1:02
and I
1:03
said,
1:03
is there
1:04
a chance
1:04
that I
1:05
would
1:05
lose my
1:05
sight?
1:06
And he
1:07
said, I'm
1:08
less
1:08
concerned
1:09
about you
1:09
losing
1:10
your sight
1:10
than I am
1:11
about
1:11
your
1:11
mortality.
1:13
And
1:13
at that
1:13
point
1:14
it became
1:16
so,
1:16
focused
1:17
in
1:17
my mind
1:18
that I'm
1:18
going to
1:18
figure out
1:19
what
1:19
to do
1:20
to save
1:20
my life.
1:21
And so
1:22
at
1:22
that point,
1:23
I went
1:23
to
1:23
Denver.
1:24
my eye,
1:25
my tumor
1:26
was
1:26
too big
1:26
to have
1:27
brachytherapy.
1:28
And I
1:28
ended up
1:29
in
1:29
Boston.
1:30
Massachusetts
1:31
eye
1:31
and ear
1:31
and I had
1:32
proton
1:32
beam
1:34
because
1:34
proton
1:34
beam is
1:35
not
1:35
available
1:36
really
1:37
in very
1:38
many
1:38
places.
1:39
from there,
1:40
I found out
1:41
that my,
1:41
tumor in
1:42
my eye
1:42
was class
1:43
two,
1:43
which is
1:44
the most
1:44
aggressive.
1:45
And my
1:46
prame
1:47
diagnosis
1:48
was negative,
1:49
which means
1:49
it's a
1:50
little
1:50
less
1:51
aggressive.
1:53
And then
1:53
I
1:54
went out.
1:54
Since I
1:55
was class
1:55
two, I
1:56
was,
1:56
eligible
1:56
for a
1:57
clinical
1:57
trial.
1:58
So,
1:59
there was
1:59
a
1:59
clinical
1:59
trial
2:00
open in
2:00
New York.
2:01
And, so
2:02
then in
2:03
2019,
2:04
I went to
2:04
New York
2:05
and,
2:06
enrolled
2:07
in a
2:07
clinical
2:08
trial
2:08
with two
2:09
drugs
2:09
called
2:09
opdivo
2:10
and
2:10
Yervoy,
2:11
which are
2:11
immunotherapy
2:12
drugs.
2:13
And
2:13
as you
2:13
can
2:14
imagine,
2:14
that was
2:14
a pretty
2:15
big
2:15
decision
2:16
from
2:16
Montana
2:17
to New
2:17
York.
2:18
And
2:18
I flew
2:19
every
2:19
two weeks
2:20
for seven
2:21
months to
2:22
to New
2:23
York.
2:23
This
2:24
kind of
2:24
a
2:24
decision
2:25
was
2:25
a decision
2:26
to be
2:27
pre
2:27
proactive
2:29
in order
2:29
to try
2:30
and
2:30
prevent
2:32
the
2:32
metastasis.
2:33
That
2:33
could
2:34
happen
2:34
with a,
2:35
with,
2:35
aggressive
2:36
tumor.
2:37
And
2:37
that was
2:38
something
2:38
that I
2:39
was
2:39
willing
2:39
to take
2:40
that risk
2:41
because
2:41
I knew
2:42
that
2:42
I was
2:42
giving
2:43
myself
2:43
the best
2:44
chance
2:45
at
2:45
hopefully,
2:46
reducing
2:47
my
2:47
chances
2:47
of,
2:48
a
2:48
metastatic,
2:49
occurrence
2:50
and also
2:51
hopefully
2:51
giving
2:52
the rest
2:52
of us
2:53
the chance
2:54
at a
2:54
breakthrough
2:55
of,
2:56
treatment
2:56
that
2:56
could
2:56
prevent
2:57
metastatic
2:58
melanoma,
2:59
ocular
3:00
melanoma.
3:01
So from
3:02
there,
3:02
my story
3:03
is a lot
3:04
the rest of yours.
3:05
I scan,
3:06
I scan,
3:07
I scan,
3:07
and
3:08
every time
3:09
it was,
3:09
you know,
3:09
I, I scan
3:10
every
3:11
three
3:11
months.
3:12
And
3:13
unfortunately,
3:14
I say,
3:14
well,
3:15
I will
3:15
say,
3:15
fortunately,
3:16
I made
3:17
the three
3:17
month
3:18
or the
3:18
three
3:18
year mark
3:19
with
3:19
no metastasis,
3:21
which was
3:21
a big
3:22
hurdle
3:22
to make,
3:23
considering
3:23
I was in the trial.
3:24
So
3:24
that was a win.
3:26
but at
3:26
five
3:26
years,
3:27
I did
3:27
develop
3:28
my first
3:28
lesion.
3:29
So, so
3:30
I've had
3:31
three
3:31
lesions
3:32
and,
3:32
they've
3:33
been each
3:34
treated
3:34
individually,
3:35
and I
3:36
feel
3:36
pretty
3:36
good
3:37
about
3:37
that,
3:37
you know,
3:38
that
3:38
were that
3:38
I have
3:39
a really
3:39
great
3:39
team
3:40
and I
3:41
worked
3:41
hard
3:41
to get
3:42
that
3:42
team.
3:43
So there
3:44
I am.
3:45
Here I
3:45
am today.
3:47
well,
3:47
Karen, I
3:48
am so
3:48
glad
3:48
you're
3:48
here
3:49
with me.
3:49
And I am
3:50
so excited
3:51
for our
3:51
listeners.
3:51
You guys,
3:52
Karen
3:52
has some
3:53
really
3:53
awesome
3:53
advice,
3:54
as
3:54
a patient,
3:55
and I,
3:56
I'm
3:56
thrilled
3:56
because
3:57
I feel
3:57
we are
3:57
kind of
3:58
two sides
3:58
of the
3:58
same coin,
3:59
and
3:59
we think
4:01
about
4:01
things
4:01
really
4:01
pretty
4:02
similarly.
4:03
And, so
4:04
I'm
4:04
really
4:04
excited
4:04
for
4:05
you guys
4:05
to learn
4:05
a little
4:05
bit about
4:06
from,
4:06
about
4:06
what
4:07
we have
4:07
to talk
4:07
about
4:07
today.
4:08
Oh my
4:08
gosh, I'm
4:09
really
4:09
excited
4:10
for
4:10
you guys
4:10
to learn
4:10
from her
4:11
about
4:11
what we
4:12
have
4:12
to talk
4:12
about
4:12
today.
4:13
so
4:14
one of the things
4:14
we were
4:15
chatting
4:15
about
4:15
earlier,
4:15
Karen,
4:16
was just
4:16
this idea
4:17
that,
4:17
when
4:17
we're
4:17
given
4:17
this
4:17
diagnosis,
4:18
one
4:18
of the
4:18
hardest
4:19
things
4:19
that
4:19
we cope
4:19
with is
4:20
this
4:20
uncertainty
4:21
and not
4:21
really
4:22
having a
4:22
set path.
4:23
Right?
4:24
So even
4:24
you
4:25
mentioned
4:25
that even
4:25
going to
4:26
the doctor
4:26
you don't
4:27
actually
4:27
get
4:27
an answer
4:28
right
4:28
away,
4:28
even when
4:29
you're
4:29
getting
4:29
your
4:29
diagnosis,
4:30
sometimes
4:30
it can
4:30
take
4:30
weeks,
4:31
months.
4:32
there's
4:32
a lot of
4:33
things.
4:33
We just have
4:34
the
4:34
answer
4:34
back from
4:35
our doctor
4:35
of well,
4:36
we don't
4:36
really know
4:37
yet
4:38
whether
4:38
it's
4:38
you're
4:38
dealing
4:39
with
4:39
metastatic
4:39
disease.
4:40
And
4:40
there's
4:40
kind of
4:40
this
4:40
watch and
4:40
wait
4:41
period
4:41
or at
4:42
the
4:42
primary
4:43
diagnosis,
4:43
there's
4:43
a lot of
4:44
these
4:44
periods
4:44
where
4:45
we have
4:45
to
4:45
kind of
4:45
just
4:45
sit back
4:46
and
4:46
our doctors
4:46
are well,
4:47
it's
4:47
actually
4:47
better
4:47
for me
4:48
to watch
4:48
and wait
4:48
first
4:49
or
4:50
I don't
4:50
actually
4:50
have
4:51
an answer
4:51
for you.
4:52
So
4:52
what did you learn
4:53
when
4:53
you were
4:54
confronted
4:54
with this
4:54
kind
4:55
of lack
4:55
of
4:55
information?
4:56
And,
4:56
you know,
4:56
all of
4:56
these
4:57
different
4:57
doctors
4:57
you've
4:57
seen
4:58
because
4:58
you've
4:58
seen
4:58
a lot
4:58
of
4:58
doctors
4:59
all
4:59
around
4:59
the country.
5:00
So
5:01
when you've
5:02
when
5:02
you've
5:02
been
5:03
confronted
5:03
with a
5:03
doctor
5:04
who maybe
5:04
is
5:04
telling
5:05
you,
5:05
well,
5:05
I don't
5:05
really
5:05
have
5:05
the answer
5:06
for you
5:06
right
5:06
now, or
5:07
maybe
5:07
they're
5:07
giving
5:07
you
5:08
answers,
5:08
you know,
5:08
what
5:09
are
5:09
some of
5:09
the
5:09
things
5:09
that
5:09
you feel
5:10
are
5:10
important
5:10
to do
5:11
initially
5:11
to get
5:12
those
5:12
answers
5:12
or
5:13
to just
5:13
kind of
5:13
get
5:13
feeling
5:14
better?
5:15
Well,
5:15
initially,
5:16
I said,
5:16
I didn't
5:17
know
5:17
how big
5:18
my tumor
5:18
was,
5:18
and I
5:19
went down
5:19
to
5:19
Denver,
5:20
and saw
5:21
Doctor
5:21
Oliver
5:22
and I.
5:22
I
5:23
can sing
5:23
his
5:23
praises.
5:24
He's
5:24
a wonderful doctor.
5:25
but
5:26
he only
5:26
performs
5:27
what is
5:27
called
5:27
brachytherapy.
5:29
And that
5:30
that is
5:30
one type
5:31
of
5:31
treatment
5:31
for a
5:32
specific
5:33
size
5:33
of tumor.
5:34
But
5:34
my tumor
5:35
was on
5:35
the
5:35
verge,
5:36
between
5:36
medium
5:37
and
5:37
large.
5:38
And,
5:39
brachytherapy
5:39
isn't
5:40
really
5:40
designed
5:41
to
5:41
treat,
5:42
the
5:42
larger
5:42
tumors.
5:43
And so
5:44
at that
5:45
point,
5:45
I was
5:46
getting
5:46
educated,
5:47
and so I,
5:49
I was,
5:50
finding out
5:50
that
5:50
there is
5:51
another
5:51
treatment
5:51
called
5:52
proton
5:52
beam.
5:53
And then
5:53
you go,
5:54
well,
5:54
how
5:55
do I find
5:55
where
5:56
does
5:56
proton
5:57
beam
5:57
is that
5:58
administered?
5:59
And,
6:00
I actually
6:01
went to
6:01
San
6:01
Francisco
6:03
and
6:03
found out
6:04
that
6:04
there is,
6:05
you know,
6:05
a
6:05
treatment
6:06
in San
6:06
Francisco,
6:07
but
6:07
their,
6:08
proton
6:08
beam
6:09
machine
6:09
was down,
6:10
their
6:10
cyclotron
6:11
was down,
6:12
and I
6:13
ended up
6:14
in
6:14
Boston.
6:15
So
6:16
there
6:16
was,
6:16
you know,
6:17
quite
6:17
a bit
6:17
of travel
6:18
now,
6:19
you know,
6:19
maybe not
6:20
everybody
6:20
is going
6:20
to go
6:21
through
6:21
that
6:21
travel.
6:22
but I did
6:23
research
6:24
ahead of
6:24
time
6:25
to say,
6:25
you know
6:26
what?
6:27
What are my options?
6:28
And
6:29
because
6:30
I didn't
6:30
want to
6:30
damage
6:31
my eye,
6:32
through
6:32
the
6:32
brachytherapy.
6:33
And I
6:34
wanted to
6:34
save
6:34
my eye,
6:35
you know,
6:36
it was
6:36
worth
6:37
going
6:37
through
6:37
that,
6:38
exercise,
6:39
if you
6:39
will.
6:42
the
6:42
asking
6:42
questions.
6:43
And
6:43
again,
6:44
I did not
6:44
know
6:44
about our
6:45
Facebook
6:45
group,
6:45
and I
6:46
just want
6:46
to say
6:46
that
6:47
in the
6:47
very
6:47
beginning,
6:48
once
6:48
I found
6:48
the
6:48
Facebook
6:49
group,
6:49
it was
6:50
just
6:50
doors
6:51
opened
6:51
for me.
6:52
So that's
6:53
where
6:53
a lot
6:54
of, help
6:55
has come.
6:56
Once
6:56
I've
6:56
done.
6:57
So
6:58
well,
6:58
it's
6:58
kind of
6:59
back up
6:59
to the
6:59
beginning,
7:00
right?
7:00
You get
7:00
a new
7:00
diagnosis.
7:01
And
7:02
as patients,
7:03
one of
7:03
the first
7:03
things
7:03
that
7:04
we feel
7:04
is fear,
7:05
right?
7:06
We feel a lot of
7:06
fear.
7:07
Did you
7:07
experience
7:08
a lot
7:08
of fear
7:08
at your
7:09
initial
7:09
diagnosis?
7:10
Yes.
7:11
Extreme
7:11
fear
7:13
I think
7:13
that's
7:13
pretty
7:13
normal,
7:14
right?
7:14
I mean,
7:14
especially
7:15
if your
7:15
doctor
7:15
tells you
7:16
something
7:16
I'm less
7:16
worried
7:17
about
7:17
your eye
7:17
and more
7:18
about
7:18
your
7:18
mortality,
7:19
right?
7:19
that's
7:20
that's
7:20
kind of a
7:21
maybe a
7:22
gentler
7:22
way
7:22
to put
7:23
it, but
7:23
also
7:23
still
7:24
very fear
7:24
inducing.
7:25
And
7:25
that's
7:26
the kind
7:26
of
7:26
information
7:27
that you
7:27
walk out
7:28
of,
7:28
you know,
7:28
that
7:28
that's
7:29
the scary
7:29
thing
7:29
of oh,
7:30
well,
7:30
I walked
7:30
in
7:30
expecting
7:31
maybe
7:31
to have
7:32
a surgery
7:33
to repair
7:33
a torn
7:34
retina,
7:34
and I
7:34
walked out
7:35
with a
7:35
cancer
7:35
diagnosis
7:36
that may
7:36
or may
7:37
not be,
7:38
mortality
7:38
inducing.
7:39
And how
7:40
horrifying
7:41
is that?
7:41
Right?
7:41
I think
7:42
we can
7:42
all
7:42
relate
7:42
to
7:43
feeling
7:43
the fear,
7:44
whether
7:44
we're
7:44
getting
7:44
a
7:44
metastatic
7:45
diagnosis
7:46
or a
7:46
primary
7:47
ocular
7:47
melanoma
7:48
diagnosis.
7:49
So it's
7:50
kind of
7:50
I mean,
7:51
for me
7:51
at least,
7:51
it's been
7:52
kind of
7:52
an
7:52
ongoing
7:52
process
7:53
to just
7:54
learn
7:54
to accept
7:55
the
7:56
unknown
7:56
or just
7:56
accept
7:57
that
7:57
the unknown
7:58
is
7:58
a
7:58
constant
7:58
part of
7:59
my life.
7:59
Now, I,
8:00
I joke
8:00
that
8:00
frozen
8:01
from,
8:02
let it go
8:02
from
8:02
frozen,
8:03
let
8:03
it go.
8:03
Let
8:03
it go,
8:04
but also,
8:04
into the
8:05
unknown.
8:05
Right?
8:06
that's
8:06
kind of
8:06
our life
8:06
is that
8:07
we just.
8:07
We're on
8:08
this
8:08
ride,
8:08
and it's
8:09
taking us
8:09
further
8:09
and
8:09
further
8:10
into
8:10
the unknown.
8:11
so
8:11
what are
8:11
some of
8:12
the
8:12
things
8:12
that have
8:12
helped
8:13
you
8:13
accept
8:13
the fear,
8:13
and
8:14
kind of
8:14
get to
8:14
that
8:14
place
8:15
where you
8:15
no
8:15
longer
8:16
are as
8:16
fearful?
8:18
Well,
8:18
that's
8:19
that's
8:19
a very
8:19
good question
8:20
because
8:20
I don't know
8:20
if we
8:21
ever
8:21
quite
8:21
get
8:22
there.
8:22
and
8:23
getting,
8:24
getting
8:25
comfortable
8:26
being
8:26
uncomfortable
8:28
and
8:28
that's,
8:28
that's
8:29
really
8:29
true.
8:30
we're,
8:30
we're
8:31
always
8:31
going to
8:31
be
8:31
scanning.
8:32
That's
8:32
just
8:33
going
8:33
to be
8:33
a part
8:33
of our
8:34
lives
8:34
and, and
8:35
always
8:36
going to
8:36
be
8:37
wondering,
8:38
is this
8:38
the time
8:39
that I'm
8:39
going
8:40
to get
8:40
that scan
8:41
that says
8:41
you have
8:42
a lesion
8:43
that is,
8:44
you know,
8:44
questionable.
8:45
And now
8:45
we have
8:46
to wait
8:46
till
8:46
the next
8:46
scan
8:47
to see
8:47
if it's
8:48
going
8:48
to grow.
8:50
And then
8:50
what are
8:50
we going
8:51
to do
8:51
about it.
8:51
There's,
8:52
there's
8:52
that
8:52
anxiety.
8:54
and
8:54
what I,
8:54
we
8:55
discussed
8:55
this
8:55
earlier,
8:56
being
8:56
comfortable
8:57
with your
8:58
oncologist
8:58
and your
8:59
medical
8:59
team.
9:00
to me,
9:00
that
9:01
gives me
9:01
a huge
9:02
comfort.
9:02
And,
9:03
knowing
9:04
that
9:04
they have
9:05
and will
9:06
take
9:06
care of me
9:07
and
9:07
they will
9:08
do their best
9:09
and
9:10
have the tools
9:11
to do
9:12
the
9:12
treatments
9:12
and will
9:13
will take
9:13
care
9:14
of me,
9:15
whatever
9:15
comes up.
9:16
So I lay
9:17
in
9:17
comfort
9:18
knowing
9:18
that
9:19
even
9:19
if that
9:20
scan
9:20
comes up
9:21
with
9:21
something
9:21
that I
9:21
don't
9:22
and I
9:22
as I'm,
9:23
you know,
9:24
anxiously
9:25
awaiting
9:25
it, I try
9:26
to remind
9:26
myself
9:27
that
9:27
my team
9:28
is here
9:28
to take
9:29
care of
9:29
me.
9:29
Don't
9:30
don't
9:31
think
9:31
that it's
9:31
all on
9:32
me,
9:32
you know,
9:33
that's
9:33
that's
9:33
you know,
9:34
I've
9:34
got to
9:34
solve
9:35
the
9:35
problem
9:36
often.
9:37
You know,
9:37
people
9:38
I will
9:39
call
9:39
myself.
9:39
I'm
9:39
a fixer
9:41
and
9:41
I want to
9:41
fix it.
9:42
I want to fix it
9:42
now.
9:43
Well,
9:43
I'm.
9:44
I'm
9:44
part of a
9:45
great team
9:45
that will fix it
9:46
and
9:47
help me
9:47
with
9:48
the process.
9:48
So having
9:50
a good
9:50
team
9:50
is important.
9:51
So
9:51
if you don't
9:51
trust
9:52
your
9:52
team,
9:52
find a
9:53
team you
9:55
So
9:55
important.
9:56
And I
9:56
love what
9:57
you said
9:57
about
9:57
how,
9:58
this is
9:58
something
9:58
that you
9:59
know,
9:59
you,
9:59
you know
10:00
about yourself
10:00
that
10:00
you're
10:00
a fixer,
10:01
but
10:01
recognizing
10:02
you don't
10:02
have to
10:02
fix it
10:03
alone.
10:04
That is such
10:05
a
10:05
good point.
10:06
And
10:06
that's
10:06
part of
10:06
why
10:06
we have
10:07
medical
10:07
teams.
10:07
That's
10:08
why
10:08
we build
10:08
a team.
10:09
And
10:09
I think
10:09
that's
10:09
maybe
10:10
one of
10:10
the
10:10
hardest
10:11
scary
10:11
feeling
10:11
things.
10:12
And and
10:13
you said,
10:13
it can
10:14
be
10:14
comforting.
10:14
But
10:14
at the same
10:15
time,
10:15
it's so
10:15
complicated
10:16
sometimes
10:16
to build
10:17
a team
10:18
of people
10:18
that you
10:18
trust,
10:19
people
10:19
that
10:19
you're
10:19
comfortable
10:20
traveling
10:20
to see,
10:21
be it
10:21
locally
10:22
or that
10:22
you have
10:22
to go out
10:23
of state.
10:24
It can take
10:24
time.
10:25
And one
10:26
of the
10:26
frustrating
10:27
things
10:27
about
10:28
time
10:28
is that
10:29
it
10:29
involves
10:30
you
10:30
sitting
10:31
you said,
10:31
and being
10:31
comfortable
10:32
in the
10:32
of the
10:33
uncomfortable,
10:34
right?
10:34
Because
10:34
it's
10:34
uncomfortable
10:35
not
10:35
to have
10:36
a solid
10:36
team
10:36
built,
10:37
but
10:37
it does
10:37
take time
10:38
to build
10:38
that
10:38
team.
10:39
It might
10:39
take you
10:39
the
10:39
better
10:40
part of
10:40
a few months.
10:41
It
10:41
might take
10:41
you years
10:43
to really
10:43
build
10:43
a team
10:44
that
10:44
you are
10:44
solidly
10:45
comfortable
10:45
with,
10:46
that you
10:46
refer to.
10:47
Okay,
10:47
hey,
10:47
I need you
10:48
to talk
10:48
to me
10:48
about this.
10:49
And
10:49
you're
10:49
my people
10:50
who I
10:50
talk to
10:50
about
10:51
this.
10:51
there's
10:51
kind of
10:52
a lot of
10:52
different
10:52
areas,
10:53
and
10:53
you can
10:54
kind of
10:54
accumulate
10:55
these
10:55
different
10:55
experts
10:56
along
10:56
the way,
10:56
so to
10:56
speak,
10:57
depending
10:57
on what's
10:58
going on
10:58
in
10:58
your story.
10:59
And it's
11:00
hard
11:00
for us
11:00
to say
11:01
exactly
11:01
what kind
11:01
of
11:01
experts
11:02
you are
11:02
going
11:02
to need
11:03
you guys,
11:03
because
11:04
your story
11:04
is going
11:05
to look
11:05
different
11:05
than mine
11:05
and
11:06
Karen's
11:06
and
11:07
that's
11:07
so
11:07
important
11:08
to
11:08
recognize
11:08
is that
11:09
it is
11:09
going to
11:09
look
11:09
different.
11:10
And so
11:11
please
11:11
take hope
11:11
and take,
11:13
you know,
11:13
take away
11:13
the hope
11:14
from
11:14
Karen
11:15
or my
11:15
story
11:15
or other
11:16
people
11:16
that are
11:16
doing
11:16
well or
11:17
that are,
11:18
you know,
11:18
doing
11:18
things
11:19
this way,
11:19
but also
11:21
feel the
11:21
stories
11:21
of other
11:22
people
11:22
and and
11:23
kind of
11:23
just mold
11:24
your own
11:24
story,
11:25
knowing
11:25
that
11:26
really
11:26
bottom
11:26
line,
11:27
you're
11:27
just not
11:27
alone
11:28
in
11:28
dealing
11:28
with this
11:29
and
11:29
dealing
11:29
with it,
11:30
and
11:30
navigating
11:30
with,
11:31
that
11:31
uncertainty.
11:32
you are
11:32
not
11:32
alone.
11:32
We're all
11:33
doing
11:33
this in
11:33
different
11:34
ways.
11:34
And so,
11:35
anyway,
11:35
Karen and
11:36
I are
11:36
trying
11:36
to,
11:37
hopefully
11:37
convey to
11:37
you guys
11:38
some ways
11:38
that you
11:39
can cope
11:39
with that
11:39
uncertainty.
11:40
Right.
11:40
And one
11:41
of the
11:41
things
11:41
that we
11:41
said,
11:42
excuse
11:42
me,
11:43
danet is,
11:43
is we
11:44
advocate
11:45
for
11:45
ourselves.
11:45
So
11:46
if you're
11:46
not
11:46
feeling
11:47
you have
11:47
that
11:48
support
11:49
is to, to
11:50
to
11:50
advocate,
11:51
to ask
11:51
the
11:51
questions.
11:52
And
11:53
again,
11:53
back to
11:54
if you're
11:54
not
11:55
finding
11:55
the support
11:56
that you
11:56
need,
11:57
do
11:58
ask
11:59
around.
11:59
Ask the
11:59
group.
12:00
Do you
12:00
have
12:01
you know
12:02
somebody
12:02
that you
12:03
would
12:03
recommend
12:04
because
12:04
it is
12:05
important
12:05
that you
12:06
feel
12:06
supported.
12:07
So to not
12:08
sit back
12:09
and feel
12:10
my doctor
12:10
is not
12:11
doing
12:11
what
12:11
I want them
12:12
to do
12:12
or
12:13
they're
12:13
not
12:13
supporting
12:14
me,
12:14
advocate
12:15
for yourself
12:16
because
12:16
so
12:16
important.
12:17
This is
12:17
very
12:18
this is a lonely disease.
12:20
Because
12:20
if
12:21
you're not,
12:21
if you're
12:21
not
12:22
supported
12:23
by
12:24
your doctor
12:24
and our
12:26
our
12:26
Facebook
12:27
group,
12:27
you know,
12:28
you
12:28
could be
12:29
out there
12:29
all on your own.
12:30
And
12:30
that's
12:30
not
12:30
a good
12:31
place
12:31
to be.
12:33
Yeah,
12:33
exactly.
12:34
Okay.
12:34
So we
12:35
talked
12:35
a lot
12:36
about
12:36
the idea
12:36
that
12:37
information
12:38
actually
12:38
can help
12:39
address
12:40
the fear.
12:40
Right.
12:41
And so
12:41
part of
12:42
part of
12:42
the fear
12:43
comes
12:43
from not
12:44
having
12:44
answers.
12:45
So of
12:46
course
12:46
time.
12:46
Right.
12:47
We know
12:47
that
12:47
time is
12:48
sometimes
12:48
needed
12:48
to get
12:49
those answers
12:50
because
12:50
maybe
12:50
you're
12:51
stuck
12:51
with a
12:51
tumor or
12:52
a, lesion
12:53
on
12:53
your liver,
12:53
or just
12:54
some
12:54
situation
12:55
has
12:55
arisen
12:55
where
12:55
there
12:56
is a
12:56
waiting
12:56
period
12:57
and so
12:58
time.
12:58
Right.
12:58
You have
12:59
to give
12:59
time.
12:59
But aside
13:00
from time,
13:01
how do you feel
13:02
information
13:02
has
13:02
helped
13:03
you in
13:03
dealing
13:03
with,
13:04
the fear
13:05
and just
13:05
the
13:05
uncertainty?
13:07
I would
13:08
much
13:08
rather
13:08
have the
13:09
diagnosis
13:10
of
13:11
anything
13:11
than
13:12
to be
13:13
waiting
13:13
with
13:14
no information.
13:15
because
13:15
then once
13:16
I have
13:16
the
13:17
information,
13:17
I can
13:18
make
13:19
a plan
13:20
and
13:20
and
13:21
create an
13:21
action
13:22
plan.
13:23
if it's a
13:23
good
13:24
or bad,
13:24
I don't
13:25
care.
13:25
I just
13:25
would
13:26
rather
13:26
have
13:26
the information.
13:27
And then
13:28
I can
13:28
move on
13:29
and and
13:30
make decisions.
13:31
If I'm
13:31
sitting
13:32
with no
13:32
information,
13:33
that's
13:33
the worst
13:34
for me.
13:35
Yeah.
13:35
It's a
13:35
limbo
13:36
feeling.
13:37
It's a
13:37
limbo
13:37
feeling.
13:38
And
13:38
I know
13:39
that
13:39
a lot
13:39
of people
13:40
on our
13:40
Facebook
13:41
page
13:42
will say,
13:43
you know,
13:43
I'm
13:43
not sure
13:43
if I
13:44
should
13:44
have the
13:45
biopsy
13:45
done.
13:47
I always
13:48
advocate
13:49
to them
13:50
to please
13:51
get the
13:51
biopsy
13:52
done,
13:52
because
13:52
then,
13:53
number
13:53
one,
13:54
you know
13:55
what you are
13:56
so that you
13:56
then can
13:57
get the
13:57
scan
13:58
schedule
13:59
and then
13:59
you have
14:00
options
14:00
to go
14:01
into
14:01
clinical
14:01
trials.
14:04
if
14:04
you don't
14:05
know,
14:05
you're
14:06
not
14:06
giving
14:06
yourselves
14:07
options
14:08
to be
14:08
proactive
14:09
for your life.
14:11
And
14:11
I really feel
14:12
sad if
14:13
people
14:13
don't
14:14
give
14:14
themselves
14:14
those
14:15
options.
14:15
So
14:16
information
14:16
is power.
14:18
Yeah.
14:19
Oh, I
14:19
love
14:19
that.
14:20
Okay,
14:20
so what
14:20
if you're
14:21
confronted
14:21
with a
14:21
doctor
14:22
who's
14:22
telling
14:22
you okay,
14:23
I don't
14:23
actually
14:24
know.
14:25
I don't
14:25
know
14:25
exactly
14:26
what's
14:26
going on
14:26
or
14:27
I
14:27
don't know
14:27
which
14:27
direction
14:28
you should
14:28
go.
14:29
I guess
14:29
I kind
14:30
of feel
14:31
what
14:31
I see
14:32
happen
14:32
for
14:32
patients
14:32
and
14:33
what I,
14:33
you know,
14:33
tend to
14:34
start
14:34
to notice
14:35
for
14:35
myself is
14:35
if my
14:36
doctor
14:36
tells me,
14:36
oh, well,
14:37
I don't
14:37
actually
14:37
really
14:37
know,
14:38
my
14:38
tendency
14:39
is to be
14:40
well,
14:40
then
14:40
I guess
14:41
there
14:41
isn't an
14:41
answer,
14:42
right?
14:42
And
14:43
I think
14:43
that,
14:44
you know,
14:44
we both
14:45
have come
14:45
to
14:45
a place
14:46
where
14:46
we recognize
14:47
if
14:47
our doctor
14:48
is not
14:48
giving us
14:48
an
14:48
answer,
14:49
not
14:49
because
14:49
they
14:49
don't
14:49
have it,
14:50
or that
14:51
it
14:51
doesn't
14:51
exist,
14:52
it's
14:52
just that
14:52
maybe
14:52
they
14:53
haven't
14:53
had
14:53
the time
14:53
to go
14:53
get it
14:54
right.
14:54
But
14:55
we have to
14:55
challenge
14:56
that,
14:56
whether
14:56
it's that
14:57
we
14:57
challenge
14:57
it and
14:57
we go
14:57
look for
14:58
information
14:58
ourselves
14:59
or just
15:00
trusting
15:00
the
15:01
this idea
15:02
of
15:02
figuring
15:02
things
15:03
out as
15:03
we go.
15:04
so
15:04
how's
15:04
that look
15:05
for you?
15:07
Well,
15:08
I
15:08
usually
15:09
come
15:09
into a
15:09
doctor's
15:09
office
15:10
with a
15:11
book.
15:12
You know,
15:13
I've read
15:13
my scans
15:14
because
15:15
usually
15:15
they're
15:15
available
15:16
before
15:16
I go
15:16
into the
15:17
doctor's
15:17
office,
15:18
and then
15:19
I ask
15:20
questions.
15:20
About
15:20
what?
15:21
The scan.
15:21
You know,
15:21
what I've
15:22
seen,
15:22
and I
15:23
question
15:23
what
15:24
I've seen
15:24
so he
15:24
can
15:25
clarify
15:25
them
15:26
for me.
15:27
And then
15:27
I ask,
15:28
you know
15:29
what?
15:29
What about this
15:30
treatment,
15:31
this
15:31
treatment
15:31
or this
15:32
treatment?
15:32
What do you think
15:33
about
15:34
those
15:34
treatments?
15:35
And I get
15:35
his
15:36
opinion
15:36
is this
15:37
is this
15:38
something
15:38
that
15:38
we need
15:39
to
15:39
consider
15:39
or
15:40
is this
15:40
something
15:40
we need
15:41
to
15:41
consider?
15:41
And then
15:42
he'll
15:42
give me
15:42
his opinion.
15:44
and then
15:44
we can
15:44
have
15:44
a discussion.
15:46
So that's
15:47
the way
15:47
it's
15:48
worked
15:48
with my oncologist.
15:51
so
15:51
I've not
15:52
ever come
15:53
to that
15:54
situation
15:54
where
15:55
my oncologist
15:55
has said,
15:56
I don't know
15:56
what to do
15:57
because
15:59
mine has
16:00
has
16:00
definitely
16:01
been
16:03
knowledgeable.
16:04
and I
16:04
trust
16:05
him.
16:06
So and
16:06
I think
16:06
that's a
16:07
good
16:07
point, is
16:07
maybe
16:08
to just
16:08
point out
16:08
that
16:09
maybe
16:09
we're
16:09
afraid
16:10
our
16:10
doctor
16:10
might say
16:11
they
16:11
don't
16:11
know an
16:11
answer.
16:12
Right?
16:12
Because
16:12
this
16:12
cancer
16:13
is so,
16:14
so much
16:14
of an
16:14
orphan
16:15
cancer
16:15
that we
16:16
don't
16:16
have all
16:17
the
16:17
answers.
16:17
We do
16:18
have
16:18
doctors
16:18
that
16:18
will readily
16:19
admit
16:19
they
16:20
don't
16:20
have all
16:20
the answers.
16:21
They're
16:21
still
16:21
trying to
16:21
figure it
16:22
out, but
16:22
I think
16:22
that's
16:23
the
16:23
point,
16:23
right?
16:23
That's
16:24
the whole
16:24
point
16:24
of that.
16:25
That
16:25
phrase is
16:26
they're
16:26
still
16:26
trying to
16:27
figure it
16:27
out.
16:28
Well,
16:28
let me
16:29
rephrase
16:29
that.
16:30
I'm not
16:30
saying
16:30
that
16:30
he
16:30
has all
16:31
the answers
16:32
about
16:32
what's
16:33
going to
16:33
happen in
16:34
the future.
16:35
That's
16:35
not what
16:36
I'm
16:36
talking
16:37
about.
16:37
He
16:37
you know,
16:38
he
16:38
can't predict.
16:39
But
16:39
if I'm
16:40
asking
16:40
about
16:41
what kind
16:42
of
16:42
treatments
16:42
would he
16:43
recommend,
16:44
we can have
16:44
a discussion
16:45
about
16:45
treatments,
16:46
but
16:47
what's
16:47
going to
16:47
happen in
16:48
the future?
16:48
There's
16:49
no magic
16:50
ball. No.
16:51
And and
16:52
there
16:52
isn't
16:52
any
16:53
proven
16:53
track
16:54
about,
16:54
you know,
16:55
what
16:55
works.
16:56
So for
16:57
instance,
16:57
when I
16:58
was
16:58
in the
16:58
clinical
16:59
trial,
16:59
is this
17:00
going
17:00
to work
17:00
or not?
17:01
No,
17:02
there's
17:02
no
17:02
answer.
17:03
even with
17:03
the
17:04
results
17:04
of the
17:04
clinical
17:05
trial,
17:06
we showed
17:07
improvements
17:08
of the statistics,
17:09
but
17:09
it's not
17:10
going
17:10
to be,
17:11
you know,
17:11
it's
17:11
not FDA
17:12
approved
17:12
yet.
17:13
So,
17:14
you know,
17:14
we can
17:15
make
17:15
inches,
17:16
we can make
17:16
improvements
17:17
and
17:17
inches,
17:18
but there
17:18
still is
17:19
no
17:19
answer.
17:21
Yeah.
17:21
You know,
17:22
that's
17:22
such a
17:22
good point
17:23
to,
17:23
And I
17:23
sorry
17:24
if I
17:24
misled
17:25
with what
17:25
I was
17:25
saying,
17:25
too.
17:26
It's it's
17:26
not
17:26
necessarily
17:27
a doctor
17:27
that's
17:27
saying
17:28
they
17:28
literally
17:28
don't
17:28
know the
17:29
answer
17:29
to your
17:29
question.
17:30
It's more
17:30
of a
17:31
maybe
17:31
your question
17:32
is one
17:32
that
17:33
they're
17:33
the only
17:33
answer is
17:34
left is
17:34
I don't
17:35
know,
17:35
I can't
17:35
I can't
17:36
give you
17:36
that
17:36
reassurance.
17:37
And
17:37
sometimes
17:38
that
17:38
can be
17:38
really
17:38
frustrating
17:39
to hear.
17:39
Right.
17:40
Because
17:40
that's
17:40
that's
17:41
where
17:41
that's
17:42
where we
17:42
get
17:42
stuck.
17:42
I think
17:43
sometimes
17:43
as we get
17:44
stuck in
17:44
the fear,
17:45
we get
17:45
stuck
17:45
in the
17:46
desire
17:46
to know,
17:46
well what
17:47
caused
17:47
this.
17:47
Right.
17:48
That's an
17:48
I don't
17:48
know,
17:49
a
17:49
question.
17:49
No doctor
17:50
can
17:50
tell you
17:50
for sure
17:51
what
17:51
caused it
17:51
to grow,
17:52
what
17:52
caused it
17:52
to
17:52
show up
17:53
in the
17:53
first place?
17:54
And
17:54
that's
17:54
one of
17:55
those
17:55
questions
17:55
that our
17:56
brain
17:56
goes
17:56
looking
17:57
for
17:57
answers.
17:57
That is
17:57
an
17:58
unhelpful
17:58
question,
17:59
right?
17:59
It's not
18:00
helpful
18:00
to stay
18:01
there
18:01
on the
18:01
what made
18:02
this
18:02
happen?
18:03
What caused
18:04
me?
18:04
What did I do
18:04
wrong?
18:05
You know,
18:05
any of
18:05
those
18:06
things?
18:06
Those are
18:06
unhelpful
18:07
questions.
18:07
And the
18:08
answer to
18:08
that is,
18:09
I
18:09
don't know.
18:10
but
18:10
if you
18:10
are.
18:11
Working
18:11
with.
18:12
Situations,
18:13
right,
18:14
that you
18:14
have to
18:15
watch
18:15
and wait
18:16
or you're
18:16
kind of
18:16
stuck
18:16
in this
18:17
waiting
18:17
period,
18:17
sometimes
18:18
challenging
18:19
the idea
18:19
of for
18:20
example,
18:20
when
18:21
I was
18:21
diagnosed
18:21
with a
18:22
liver met
18:22
the first thing
18:23
my doctor
18:23
told me
18:24
was,
18:24
well,
18:24
this is
18:24
too small
18:24
to
18:25
biopsy.
18:25
And
18:26
everyone
18:26
that I've
18:26
talked to
18:27
has
18:27
agreed.
18:27
It's in
18:28
a really
18:28
hard
18:28
location,
18:29
so we
18:29
kind of
18:29
just have
18:29
to watch
18:30
and see
18:30
what happens.
18:31
That was
18:31
really
18:32
uncomfortable
18:32
for me
18:32
because
18:33
I wanted
18:33
to take
18:33
action.
18:34
I wanted
18:35
to just
18:35
get rid
18:35
of it.
18:36
I wanted to
18:36
start
18:36
a clinical
18:37
trial.
18:37
I wanted
18:37
to do
18:38
whatever it was
18:38
that was
18:39
going to
18:39
be
18:39
the best
18:39
plan
18:40
for me.
18:40
And so
18:41
to be
18:41
stuck in
18:41
that
18:42
limbo
18:42
and not
18:43
have a
18:44
for sure
18:44
we could
18:44
do
18:45
something
18:45
now
18:45
kind of
18:45
an action
18:46
that was an
18:47
I don't know
18:47
that
18:48
I didn't
18:48
but
18:48
it was
18:48
also one
18:49
that I
18:49
could
18:49
challenge,
18:50
right?
18:50
That
18:50
I could
18:50
go into
18:51
doing
18:51
more
18:51
research.
18:52
I could go
18:52
into
18:53
learning
18:53
about my
18:54
present
18:54
situation
18:55
and
18:55
what could I
18:56
do?
18:56
What
18:56
kinds of
18:57
biopsy
18:57
was
18:57
I going
18:57
to look
18:58
forward
18:58
to if
18:58
I needed
18:59
it?
18:59
And it
18:59
just
18:59
became,
19:00
instead
19:00
of
19:00
getting
19:01
stuck
19:01
in the
19:01
I don't
19:01
know
19:02
when I'm
19:02
really
19:02
scared,
19:03
it became
19:03
okay.
19:04
I don't
19:04
know.
19:04
And I'm
19:05
still
19:05
going to
19:05
do
19:05
research
19:06
and
19:06
figure
19:06
out plan
19:07
Abcdefg
19:09
because
19:09
then
19:09
if we
19:10
need it,
19:10
we have
19:11
it
19:11
lined up.
19:11
And
19:12
thankfully
19:12
I have
19:12
a doctor
19:13
who knows
19:13
that I am
19:13
that kind
19:14
of
19:14
a patient
19:14
and he's
19:15
willing
19:15
to, talk
19:15
through
19:15
the
19:16
hypothetical
19:16
with me.
19:17
and
19:17
sometimes
19:17
that's
19:18
all we
19:18
need.
19:18
that's
19:18
also
19:19
something
19:19
that
19:19
disclaimer
19:20
you
19:20
can do
19:20
with a
19:21
therapist.
19:21
It's
19:21
really
19:22
a good
19:22
idea
19:22
to have
19:23
a
19:23
therapist
19:23
with this
19:24
diagnosis.
19:24
So
19:24
if you're
19:24
able to
19:25
have
19:26
someone
19:26
to
19:26
provide
19:26
that kind
19:27
of talk
19:27
therapy
19:27
support
19:28
or
19:28
psychological
19:29
support.
19:30
so little
19:30
disclaimer
19:31
there.
19:31
you
19:31
mentioned
19:32
a little
19:32
trick,
19:33
Karen,
19:33
about,
19:33
getting
19:34
in touch
19:34
with your
19:34
doctor,
19:35
right?
19:35
What
19:35
if you
19:35
have a
19:35
question,
19:36
you've
19:36
had your appointment
19:37
and
19:37
you're
19:37
well,
19:37
crap,
19:38
I forgot
19:39
abcdefg
19:40
on my
19:40
list.
19:40
I forgot
19:41
to
19:41
ask him
19:41
these things.
19:42
What have you
19:43
found
19:43
to be
19:43
the
19:43
best way
19:43
to get
19:44
in touch
19:44
with
19:44
your doctor
19:45
and your
19:45
medical
19:45
team?
19:46
Well,
19:47
I found
19:47
the best
19:48
is when
19:48
you call
19:49
the front
19:49
desk, ask
19:50
for your
19:51
doctor's
19:51
nurse
19:52
and say.
19:53
And
19:54
then once
19:54
you get
19:54
a hold
19:55
of the
19:55
nurse,
19:55
say,
19:55
could you
19:56
please,
19:57
have
19:57
doctor
19:58
so-and-so,
19:59
call me
20:00
back,
20:00
or
20:01
this is
20:01
the question
20:02
that
20:02
I have
20:02
for my
20:03
doctor,
20:03
and,
20:04
could you
20:04
please
20:05
pass it
20:05
on?
20:05
Because
20:06
you
20:06
get to
20:06
the
20:06
doctor
20:07
a lot
20:07
quicker
20:07
if you
20:08
get
20:08
to his
20:08
nurse
20:08
first.
20:09
If
20:09
you leave
20:10
that
20:10
message
20:10
at the
20:11
front
20:11
desk,
20:11
it
20:11
could sit
20:12
there for
20:12
a long
20:12
time.
20:14
Yeah,
20:14
and
20:14
another
20:14
phrase
20:15
for
20:15
those of you,
20:16
if you're
20:16
not maybe
20:16
your
20:16
doctor
20:17
uses
20:17
different
20:17
terms.
20:18
My doctor
20:18
uses
20:18
the term
20:19
medical
20:19
assistant.
20:20
He has
20:20
a medical
20:21
assistant
20:21
that
20:21
designates
20:22
all of the
20:23
messages
20:23
that
20:23
go to
20:24
and from
20:24
back and
20:25
forth.
20:25
So
20:26
medical
20:26
assistant,
20:26
your
20:27
doctors
20:27
nurse,
20:27
just
20:28
try to
20:28
figure
20:28
out who's
20:29
kind
20:29
of the
20:29
key
20:29
person
20:30
that your
20:30
doctor
20:31
talks to
20:31
so that
20:32
you can
20:32
be in
20:32
touch
20:32
with them
20:33
directly
20:33
and not
20:34
just,
20:35
you know,
20:35
somebody
20:35
way down
20:36
the chain
20:36
of, of
20:36
command,
20:37
so to
20:37
speak.
20:39
okay.
20:39
I love
20:39
that
20:39
trick.
20:40
Thank you
20:40
Karen.
20:41
So okay,
20:42
I want to
20:42
move on
20:43
to
20:43
talking a
20:44
little
20:44
bit more
20:44
about
20:44
kind of
20:45
the ways
20:45
that
20:45
we can
20:45
educate
20:46
ourselves
20:46
as
20:46
patients.
20:47
And
20:47
I love
20:48
what you
20:48
talked
20:48
about
20:48
earlier
20:49
when you
20:49
said,
20:49
you know,
20:50
there's
20:50
a few
20:50
different
20:50
sources
20:51
outside
20:51
of
20:51
your doctor
20:52
that you
20:52
look to
20:53
for
20:53
information.
20:54
So one of
20:55
the things
20:55
you
20:55
mentioned
20:56
was word
20:56
of mouth.
20:57
So
20:57
how have you
20:57
found
20:58
word of
20:58
mouth?
20:58
Because
20:58
you live
20:59
in
20:59
Billings,
20:59
Montana.
21:00
My suspicion
21:00
is you
21:01
don't
21:01
actually
21:01
have
21:02
local
21:02
neighbors
21:02
you
21:02
go and
21:03
talk to
21:04
at book
21:04
club
21:04
about
21:05
ocular
21:05
melanoma.
21:06
I'd So
21:07
how do you talk
21:07
to people
21:08
if you're
21:08
in the
21:08
middle of
21:08
nowhere
21:09
with no
21:09
patients
21:09
around
21:10
you?
21:11
Well,
21:11
honestly,
21:12
our Facebook
21:13
group,
21:14
has been
21:14
my one of
21:15
my
21:15
biggest
21:16
support
21:17
groups.
21:17
And when
21:19
somebody
21:19
gets
21:20
a treatment,
21:21
they'll
21:21
say, you
21:21
know,
21:22
what kind
21:22
of
21:22
treatment
21:23
they've
21:23
had,
21:23
what kind
21:23
of
21:23
experience
21:24
they've
21:24
had.
21:25
And
21:25
then I
21:26
have
21:26
the ability
21:27
to then
21:27
go
21:28
to the internet
21:28
and look
21:29
that
21:29
treatment
21:30
up and
21:30
find out,
21:31
you know,
21:31
specifics
21:32
about it,
21:33
where
21:33
it's
21:33
offered.
21:35
because
21:35
we don't
21:35
have
21:35
anything
21:36
offered
21:36
here.
21:36
You know,
21:37
I can't
21:37
besides
21:38
radiation,
21:38
which
21:39
I did
21:39
have one.
21:40
One of
21:40
my three
21:41
treatments
21:41
was done
21:42
here and
21:42
it was
21:43
radiation.
21:44
Most
21:44
of my
21:45
other two
21:45
treatments
21:45
were done
21:46
in New
21:46
York.
21:47
that's
21:47
that's
21:48
something
21:48
that I'm
21:48
I have to
21:49
face,
21:49
you know,
21:49
my
21:50
treatments
21:50
are going
21:50
to be
21:50
done
21:51
elsewhere.
21:53
danet
21:53
when
21:54
she had
21:54
her
21:55
histotripsy
21:56
she posted,
21:57
not only
21:58
about the
21:58
histotripsy
21:59
, but
21:59
there was
21:59
a podcast
22:00
that she
22:01
posted
22:01
about.
22:01
So
22:02
I was able
22:03
to go to
22:03
that
22:03
podcast
22:04
and learn
22:05
about the
22:05
doctor
22:06
and
22:06
specifically,
22:08
you know,
22:08
where his
22:08
clinic
22:09
was.
22:10
And so
22:10
I feel
22:11
that
22:12
through
22:12
our
22:12
Facebook
22:13
group,
22:14
online
22:14
has been
22:15
a huge,
22:16
huge,
22:17
support,
22:18
emotional
22:18
support,
22:19
people
22:20
that are
22:20
real,
22:21
that are
22:21
going
22:22
through
22:22
what you,
22:22
you know,
22:23
we're
22:23
all going
22:23
through
22:23
the same thing.
22:25
And then
22:25
also
22:26
we're
22:26
share
22:26
a shared
22:27
experiences
22:28
with the
22:28
with the
22:28
specific
22:29
treatments,
22:30
how those
22:31
treatments
22:31
have
22:31
affected
22:32
us,
22:32
you know,
22:33
what
22:33
kind of
22:33
side
22:33
effects.
22:34
And then
22:35
we can go
22:36
and
22:36
research
22:36
them
22:37
on our own,
22:37
which
22:37
I do.
22:38
And then
22:39
of
22:39
course,
22:40
you know,
22:40
going to
22:41
the
22:41
acureinsight.org,
22:42
page,
22:43
going to,
22:44
again,
22:45
the
22:45
doctors,
22:46
researching
22:46
the
22:47
specific
22:47
doctors
22:48
that
22:48
have been
22:48
mentioned
22:49
and then,
22:50
you know,
22:50
connecting
22:51
one on one.
22:52
So
22:52
I've done
22:53
that
22:53
quite
22:53
a bit.
22:54
So I've
22:54
reached
22:55
out to
22:55
people
22:56
to offer
22:56
that
22:57
are new
22:57
to
22:58
the page.
22:58
If
22:58
they want
22:59
to have a
23:00
one on
23:00
one talk
23:01
with me,
23:02
or if
23:02
somebody else
23:03
has had
23:03
a
23:03
treatment
23:04
that
23:04
I'm interested
23:05
in, I'll
23:05
reach
23:05
out to
23:06
them
23:06
and say,
23:07
how did that
23:07
go?
23:08
So that
23:08
I can
23:08
learn
23:09
from
23:09
them?
23:11
Well, and
23:11
it's it's
23:12
so
23:12
important,
23:13
I think,
23:13
to just
23:13
note here
23:14
that what
23:14
Karen is
23:15
describing
23:15
is not
23:16
I'm going
23:17
to
23:17
Facebook
23:17
for
23:17
medical information
23:18
and
23:19
I'll my soul
23:20
you know,
23:20
my soul
23:20
point of
23:21
contact
23:21
with how
23:22
I'm
23:22
learning
23:22
about
23:22
something.
23:23
it's
23:23
one thing
23:24
to take
23:24
medical
23:24
advice
23:25
from a
23:25
Facebook
23:25
group.
23:25
It's
23:26
another
23:26
to say,
23:26
ooh, that
23:27
sounds
23:27
interesting.
23:28
I want to
23:28
learn
23:29
more and
23:29
to go
23:30
and do
23:30
your own
23:30
research,
23:31
which
23:31
that's
23:31
what
23:31
Karen is
23:32
advocating
23:32
for, is
23:33
this idea
23:33
that you
23:33
can take
23:34
the
23:34
information,
23:35
the experience
23:36
from
23:36
other people,
23:37
and
23:37
you can
23:37
then
23:38
learn
23:38
from it.
23:39
And
23:39
it's a
23:39
little
23:39
bit of,
23:40
a puzzle.
23:40
Right?
23:41
You kind
23:41
of
23:41
have to
23:41
figure
23:42
out
23:42
the pieces
23:42
of the
23:42
puzzle
23:43
along
23:43
the way.
23:44
Karen,
23:44
is this
23:45
the kind
23:45
of thing
23:45
that,
23:45
just
23:46
let's use
23:46
Histotripsy
23:47
as
23:47
an example
23:47
because
23:47
you
23:47
mentioned
23:48
that.
23:48
Did you
23:49
just,
23:49
see that
23:49
one day?
23:50
And
23:50
then by
23:50
the end
23:50
of
23:51
the day,
23:51
you had
23:51
all
23:51
the answers
23:52
you
23:52
needed?
23:52
Or did it
23:53
take a
23:53
little bit
23:53
of time
23:54
to get
23:54
those
23:54
answers?
23:55
Yeah,
23:55
it took
23:56
a little
23:56
bit of
23:56
time.
23:57
first
23:57
you
23:58
shared
23:58
that
23:58
you were
23:59
having it,
23:59
and then
24:00
I don't
24:01
remember
24:01
how much
24:02
longer
24:02
it was
24:02
till
24:03
you
24:03
posted
24:03
a podcast.
24:04
Then I
24:05
joined,
24:06
another
24:06
Facebook
24:07
group
24:07
that's
24:07
specifically
24:08
for
24:09
histotripsy
24:10
patients.
24:11
you
24:11
don't
24:12
have
24:12
to be
24:12
a patient.
24:12
You can
24:13
just
24:13
join it.
24:14
Yeah.
24:14
Just say
24:14
it's an
24:15
interest
24:15
group.
24:15
I think
24:16
it's.
24:16
An
24:16
interest
24:16
group.
24:17
And,
24:18
since
24:18
this is
24:18
something
24:19
that's
24:19
new,
24:20
you know,
24:20
and
24:20
and it's
24:22
it is
24:22
FDA
24:23
approved,
24:23
but
24:24
there are
24:24
still
24:24
a lot
24:25
of
24:25
questions
24:25
out there
24:26
whether
24:26
or not,
24:27
you know,
24:27
it's
24:27
going
24:27
to be,
24:29
you know,
24:29
successful
24:30
or,
24:30
you know,
24:31
you know,
24:32
are
24:32
the lesions
24:33
going to
24:33
come
24:33
back?
24:34
You know,
24:34
there's
24:34
a lot
24:34
of
24:34
question
24:35
about its
24:36
effectiveness.
24:37
So,
24:37
you know,
24:38
people
24:38
are
24:38
asking
24:39
a lot
24:39
of
24:39
questions
24:40
and
24:40
rightly
24:40
so
24:41
because
24:41
we are
24:43
there
24:43
again,
24:43
coming
24:44
back to
24:44
the unknown.
24:45
We don't
24:45
know.
24:46
There are
24:46
there are
24:47
so many
24:47
new
24:48
things
24:48
being
24:48
tried
24:49
and it's
24:49
exciting,
24:50
but
24:51
it's also
24:52
we're
24:52
we're
24:52
a test
24:53
group
24:54
just
24:54
back to
24:55
what
24:55
I did
24:55
with the
24:56
clinical
24:56
trial
24:57
to try
24:57
and see
24:58
if
24:58
I could
24:58
prevent,
24:59
if
24:59
I could
24:59
help try
25:01
these
25:01
drugs
25:01
to help
25:02
prevent
25:03
metastasis.
25:04
You know,
25:04
we're
25:05
we're
25:05
trying
25:06
anything
25:06
to
25:07
extend
25:07
our lives
25:08
and,
25:09
and to be
25:09
a part of that.
25:10
So
25:11
I commend
25:12
you,
25:12
danet
25:13
and I
25:14
and
25:14
I think
25:15
it's
25:15
wonderful.
25:15
And I'm
25:15
very
25:16
curious
25:16
about
25:16
that
25:17
procedure
25:18
because
25:18
it,
25:18
it also
25:19
has side
25:20
effects.
25:20
And
25:21
that's
25:21
the
25:21
other thing
25:21
that we
25:22
deal
25:22
with,
25:22
with
25:22
a lot of
25:23
the drugs
25:23
in the
25:24
clinical
25:24
trials
25:24
are the
25:25
side
25:25
effects.
25:27
So the
25:28
lyrics
25:28
for the
25:29
song from
25:30
Oh
25:30
goodness.
25:30
What's
25:30
the movie
25:32
Zootopia
25:33
from
25:33
Disney?
25:33
it's try
25:34
everything.
25:35
Right?
25:35
I want to try
25:36
everything
25:36
and what
25:37
a what
25:37
an
25:37
empowering
25:38
way to
25:38
frame
25:39
that.
25:39
Right.
25:39
And
25:39
I think
25:40
that
25:40
that's
25:40
what you
25:40
and I
25:40
have
25:40
talked
25:41
a lot
25:41
about
25:41
is this
25:41
idea that
25:42
we can
25:42
either
25:42
frame
25:43
the unknown
25:43
as a
25:43
scary
25:44
place
25:44
or
25:45
as a place
25:45
that is a
25:46
bit of a
25:46
challenge,
25:47
right?
25:47
A
25:47
challenge,
25:47
a puzzle
25:48
to
25:48
be solved.
25:49
And
25:49
if we can
25:50
approach
25:50
our
25:50
diagnosis
25:51
from
25:51
the idea
25:51
that
25:51
this is
25:52
a puzzle
25:52
to be
25:52
solved
25:53
and be
25:54
hand-in-hand
25:54
with our doctors
25:55
and not
25:55
caught up
25:56
in the fear,
25:57
because
25:57
that's
25:57
where our
25:57
doctors
25:58
live.
25:58
You guys,
25:59
our
25:59
doctors,
25:59
live in
25:59
the place
26:00
where
26:00
they see
26:01
us.
26:01
They see
26:01
this
26:02
diagnosis
26:02
as a
26:02
puzzle to
26:03
be
26:03
solved.
26:04
they
26:04
believe
26:05
it will
26:05
be solved
26:05
or that
26:06
it can.
26:06
It has
26:07
the
26:07
potential
26:07
to be
26:08
solved.
26:08
Hard
26:09
to do.
26:09
That.
26:09
And
26:10
they're
26:10
working
26:10
so hard.
26:11
People
26:11
are
26:11
researching.
26:12
We've got
26:12
people in
26:12
clinical
26:13
trials.
26:13
We have
26:13
primary
26:14
investigators
26:15
of just
26:15
the
26:15
doctors
26:16
who are
26:16
running
26:16
these
26:17
clinical
26:17
trials.
26:18
We've got
26:18
doctors
26:18
just
26:19
kind of
26:19
throwing
26:20
noodles
26:20
at a wall
26:21
to see
26:21
what
26:21
sticks
26:22
with each
26:22
patient.
26:23
Right?
26:23
Everybody
26:23
is just
26:24
really
26:24
trying
26:25
everything
26:25
they can
26:25
think of
26:26
to
26:26
make sure
26:27
that
26:27
patients
26:27
have
26:27
the best
26:28
outcome
26:28
possible
26:28
and
26:29
they care
26:29
so much.
26:31
but
26:31
if we
26:31
come into
26:31
an appointment
26:32
and we're
26:32
so stuck
26:33
in fear
26:34
that all
26:34
our doctor
26:34
can do
26:35
is try
26:35
to
26:35
reassure
26:36
us
26:36
through
26:36
the fear,
26:37
then
26:37
we're not
26:38
really
26:38
having
26:38
an
26:38
effective
26:39
appointment.
26:40
And I
26:40
think
26:40
that's
26:40
part
26:40
of what
26:41
Karen
26:41
and I
26:41
want to
26:42
talk to
26:42
you guys
26:42
about, is
26:43
just help
26:43
you get
26:43
to
26:43
a place
26:44
where you
26:44
can
26:44
recognize
26:45
a it's
26:46
valid.
26:46
It's very
26:47
valid,
26:47
and it's
26:48
normal
26:48
to be
26:48
scared.
26:49
It's
26:49
normal
26:50
to be
26:50
stuck in
26:51
that
26:51
unknown
26:52
until not
26:52
how it
26:53
feels.
26:53
You don't
26:54
have to
26:54
how it feels.
26:55
But
26:55
I think
26:56
that the
26:56
big point
26:56
that we
26:57
want
26:57
to get
26:57
across is
26:57
you
26:58
are not
26:58
powerless.
27:00
You are not powerless.
27:01
And
27:01
if you
27:01
approach
27:01
your
27:01
appointment
27:02
from a
27:02
place
27:03
of
27:03
believing
27:03
that
27:03
you can
27:04
figure
27:04
this out,
27:05
that
27:05
together
27:06
with your
27:06
medical
27:06
team,
27:07
you guys
27:07
can
27:07
figure
27:08
something
27:08
out.
27:08
It might
27:09
just be
27:09
one
27:09
little
27:10
puzzle
27:10
piece,
27:10
right?
27:11
You
27:11
might not
27:11
get the
27:11
whole
27:12
puzzle
27:12
put
27:12
together.
27:13
But even
27:13
if you
27:13
just
27:13
take one
27:14
step
27:14
forward
27:15
and I
27:15
think,
27:15
Karen,
27:15
you said
27:16
one inch
27:16
forward,
27:17
that's
27:17
still
27:17
an inch
27:18
and
27:18
that's
27:18
still
27:19
a game.
27:20
Absolutely.
27:21
Yep.
27:21
And and
27:22
that is
27:22
and and
27:23
feeling
27:24
you are
27:24
engaged
27:25
in
27:25
your own
27:26
treatment
27:26
in
27:27
and that
27:28
and
27:28
the people
27:28
that you
27:29
meet
27:29
along
27:29
the way.
27:29
That's
27:30
the other
27:30
thing.
27:31
I met
27:31
wonderful
27:31
people
27:32
through
27:32
my,
27:33
clinical trial,
27:34
and
27:34
they all
27:34
cared
27:35
so much,
27:35
and
27:35
they cared
27:36
about me,
27:36
and
27:36
they cared
27:37
about
27:37
the other,
27:38
patients,
27:39
and
27:39
they cared
27:39
about
27:39
the outcomes.
27:40
And so,
27:42
you know,
27:43
I saw
27:43
that
27:44
and I
27:44
appreciated
27:45
that.
27:45
And
27:46
again,
27:47
that made me feel
27:48
I was doing
27:48
the right
27:49
thing
27:49
for me
27:50
and for
27:51
the rest
27:51
of us.
27:52
You know,
27:52
it it
27:53
made
27:53
me feel
27:55
that,
27:56
again,
27:56
this
27:56
this is
27:58
a scary
27:58
place
27:59
to be,
28:00
but
28:01
it is
28:01
something
28:01
that I
28:02
feel it's
28:02
worthwhile
28:03
engaging
28:04
in,
28:04
because
28:05
I'd
28:05
rather be
28:05
engaged
28:06
than
28:06
sit back
28:07
and be
28:07
afraid.
28:10
Yep.
28:11
And
28:11
I think
28:11
that one
28:12
of the
28:12
other
28:12
things
28:12
that we
28:13
have
28:13
talked
28:13
about
28:13
together
28:14
is
28:14
this idea
28:14
that
28:15
you can
28:15
be engaged
28:16
and
28:17
you can
28:17
still
28:18
live
28:18
your life,
28:19
right,
28:19
you can still
28:19
live
28:19
your life,
28:20
you can disengage
28:21
at will
28:22
from
28:23
cancer.
28:23
Just
28:24
because
28:24
Karen
28:24
and I
28:24
are
28:24
talking
28:25
about
28:25
doing
28:25
your own
28:25
research
28:26
about,
28:26
you know,
28:27
tapping
28:27
into
28:27
the podcast,
28:28
that
28:28
doesn't
28:29
mean
28:29
you're
28:29
spending
28:30
every
28:30
single day
28:31
and
28:31
making it
28:31
your
28:31
full time
28:32
job
28:32
all day
28:32
long to
28:33
research
28:34
ocular
28:34
melanoma
28:34
or
28:35
metastatic
28:35
treatments
28:36
or
28:36
clinical
28:36
trials.
28:37
be it
28:37
what
28:37
it is,
28:38
it
28:38
doesn't
28:39
mean that
28:39
it just
28:40
means
28:40
that you
28:41
stay
28:41
engaged
28:42
with
28:42
the process
28:43
when you need it,
28:44
and
28:44
when it's
28:44
the most
28:44
beneficial
28:45
for you.
28:45
Now,
28:46
I kind of
28:46
want
28:46
to add
28:47
a caveat
28:47
and
28:48
ask you
28:48
if maybe
28:48
you've
28:48
gone
28:49
through
28:49
this too.
28:49
Sometimes
28:50
when I'm
28:51
stuck in
28:51
a place
28:52
of
28:52
waiting,
28:52
right,
28:53
where
28:53
maybe
28:53
I have
28:53
a scan
28:53
result,
28:54
my doctor
28:54
doesn't
28:54
know
28:55
for sure
28:55
what's
28:55
going on,
28:56
and
28:57
we have
28:57
to sit
28:57
back and
28:58
watch
28:58
and wait.
28:59
That is
29:00
one of
29:00
the
29:00
hardest
29:01
things
29:01
for me
29:01
because
29:01
I want
29:02
the answers.
29:03
And so
29:03
then I go
29:04
looking
29:04
for
29:04
the answers
29:05
because I
29:05
too
29:05
am
29:05
someone
29:06
who feels
29:06
empowered
29:06
by
29:07
information.
29:07
So I go
29:08
looking
29:08
for
29:08
the answers,
29:09
and
29:09
sometimes
29:10
I dig,
29:11
really
29:11
deep.
29:12
Sometimes
29:13
I get
29:13
really,
29:14
really
29:14
bogged
29:14
down
29:14
and I
29:15
almost
29:15
kind of
29:15
get
29:15
tunnel
29:16
vision.
29:17
And then
29:17
I want
29:17
the next
29:18
answer
29:18
and I
29:18
want the
29:19
next
29:19
answer.
29:19
And,
29:20
and it's
29:20
kind of
29:20
the
29:20
definition
29:21
of pi,
29:22
right.
29:22
the
29:22
number
29:22
3.14 or
29:23
whatever.
29:24
it just
29:24
keeps
29:24
going on
29:25
forever.
29:25
you will always
29:26
find
29:26
something
29:27
else to
29:27
want
29:27
to find
29:28
an answer
29:28
to.
29:29
So
29:29
I think
29:29
that this
29:29
needs to
29:30
be
29:30
tempered
29:30
a
29:30
little bit
29:31
with
29:31
the yes,
29:31
do
29:31
your own
29:32
research,
29:32
but also
29:33
recognize
29:34
when it's
29:34
emotionally
29:35
or
29:35
mentally
29:35
becoming
29:36
too much
29:36
for you,
29:37
because
29:37
I think
29:37
we all
29:37
get to
29:38
that
29:38
point,
29:38
and that
29:39
point
29:39
is going
29:39
to look
29:39
different
29:39
for me
29:40
than it
29:40
looks
29:40
for Karen
29:41
or for
29:41
you.
29:42
so it's
29:42
really
29:43
important
29:43
to
29:43
recognize
29:44
that it's
29:44
okay to
29:45
unplug
29:46
and to
29:46
disengage
29:47
from the
29:47
cancer
29:47
world.
29:48
and it's
29:48
so, so
29:49
vital
29:49
that
29:50
you do
29:50
that.
29:50
I've
29:51
talked
29:51
about
29:51
this with
29:51
other
29:52
guests
29:52
on the
29:52
podcast,
29:53
but,
29:53
Karen,
29:53
what are
29:54
a couple
29:54
of
29:54
the ways
29:54
that
29:54
you feel
29:55
you're
29:55
able
29:55
to just
29:56
disengage
29:56
from
29:56
cancer
29:57
and focus
29:57
on being
29:58
present
29:58
and just
29:58
living
29:59
your
29:59
life?
30:00
Well, I'm
30:01
in that
30:02
situation
30:02
right
30:02
now.
30:03
I am
30:03
waiting
30:04
for
30:04
a call
30:05
from
30:05
New York.
30:06
I have
30:07
my results.
30:08
I have
30:08
questions,
30:10
and, it's
30:11
difficult.
30:12
for me,
30:13
it's
30:13
prayer
30:14
for me.
30:15
It's
30:15
family
30:17
for me.
30:17
Because
30:18
we have
30:18
some nice
30:19
fall
30:20
days.
30:20
Right
30:20
now.
30:21
It's
30:21
taking
30:21
my dog
30:22
for a
30:22
walk.
30:23
for me,
30:24
it is
30:25
being
30:25
active
30:26
and
30:26
and not
30:28
not
30:28
sitting
30:29
and
30:29
thinking,
30:29
you know,
30:30
it's
30:30
very hard
30:31
for me
30:31
not
30:31
to want
30:33
to send
30:34
an email
30:34
and say,
30:35
have you
30:35
heard
30:36
anything
30:36
yet?
30:37
You know,
30:37
to to
30:38
the person
30:39
I contact
30:39
back east
30:40
and, but
30:41
to sit
30:42
and
30:42
be patient
30:43
and
30:44
that is
30:44
very
30:44
difficult.
30:45
I,
30:45
I still have
30:46
troubles
30:47
with
30:47
that. So.
30:48
Well and
30:49
I think
30:49
that's
30:49
normal
30:50
it.
30:50
Yeah
30:50
it is
30:51
and, and
30:51
I think
30:52
everybody
30:52
goes
30:53
through
30:53
that.
30:54
But
30:54
again,
30:54
back to
30:55
that.
30:55
Trusting
30:56
in my
30:56
team,
30:57
trusting
30:57
that
30:57
that in,
30:58
in
30:58
their time
31:00
I have
31:00
to let
31:00
them
31:01
process.
31:02
And in
31:02
their time
31:03
they will get
31:03
back
31:04
to me
31:04
with
31:04
an answer
31:05
that is
31:06
appropriate.
31:07
And and
31:07
if it was
31:08
an
31:08
emergency,
31:09
I
31:10
you come
31:10
back to
31:10
the adage,
31:12
you know,
31:12
no
31:12
news is
31:13
good news.
31:14
If it was
31:14
a real
31:15
emergency,
31:16
they would be
31:16
already
31:17
in touch
31:17
with me
31:18
so that
31:19
that's
31:20
where I
31:21
have to
31:21
live and
31:22
I have to
31:23
give my
31:23
give me.
31:25
I have to
31:26
take
31:26
the deep
31:26
breath
31:27
and I
31:28
have to
31:28
say, it's
31:28
okay.
31:29
They're
31:30
working on it
31:31
and
31:31
they'll
31:31
get back
31:31
to me.
31:32
And I'm
31:32
coming up
31:33
against
31:33
the
31:33
weekend,
31:34
and I'm
31:34
probably
31:34
going to
31:35
have
31:35
to wait
31:35
till
31:35
Monday.
31:36
And
31:36
that's
31:37
not easy.
31:37
But
31:38
I have
31:39
plans
31:39
with
31:39
my family
31:40
this weekend,
31:41
and I'm
31:41
just
31:41
going to
31:41
have to
31:42
put
31:43
put this
31:43
on
31:44
the shelf
31:45
and go
31:46
do my
31:46
family
31:46
plans.
31:48
Well,
31:48
okay.
31:49
guys, you
31:49
guys
31:49
listening?
31:50
Let's all
31:50
just
31:50
take a
31:51
deep
31:51
breath
31:51
together.
31:51
So Karen,
31:52
I love
31:52
that
31:52
you did
31:53
that on
31:53
long
31:53
cameras.
31:54
Let's
31:54
do it
31:54
again
31:55
because
31:55
I'm sure
31:55
it felt
31:56
really
31:56
good.
31:57
Yeah.
31:57
Okay.
31:57
So in
31:58
through
31:58
your nose.
32:01
Maybe.
32:02
Hold it.
32:03
321
32:06
and
32:06
let it
32:06
all out.
32:07
And just
32:07
the act
32:08
of taking
32:08
a deep
32:08
breath is
32:09
so grounding
32:10
and it's
32:11
so
32:11
helpful.
32:11
We've had
32:11
multiple
32:12
people
32:12
who've
32:13
been open
32:13
guests,
32:13
guest
32:14
speakers,
32:14
guests on
32:14
the podcast
32:15
who've
32:15
talked
32:15
about
32:16
the importance
32:16
of just
32:17
giving
32:17
yourself
32:17
space
32:18
to
32:18
breathe.
32:19
and I
32:19
think,
32:19
you said,
32:20
just
32:20
trusting,
32:20
trusting
32:21
the
32:21
process,
32:21
trusting
32:22
that no
32:22
news is
32:23
maybe not
32:23
the best news,
32:24
but it's
32:24
also it's
32:25
not
32:25
an emergency
32:26
unless
32:26
they're
32:26
getting
32:27
an
32:27
immediate
32:27
contact
32:28
with you
32:28
and that
32:29
that is a
32:29
good thing.
32:30
let's
32:31
just kind
32:31
of
32:31
highlight
32:31
a couple
32:32
things
32:32
as we
32:32
kind of
32:33
look back
32:33
on our
32:33
episode
32:34
today.
32:34
Karen
32:35
talked
32:35
about
32:35
making
32:35
sure
32:36
that you
32:36
have
32:36
confidence
32:37
in your
32:37
physician
32:38
team.
32:39
If
32:39
you don't
32:39
have
32:39
confidence,
32:40
then
32:40
you need
32:41
to be
32:41
looking
32:41
elsewhere.
32:42
One
32:42
of the best
32:42
places
32:43
that
32:43
you can start
32:43
is
32:44
you can
32:44
reach out
32:44
to other
32:45
ocular
32:45
melanoma
32:46
patients
32:46
who seem
32:47
to be
32:47
having
32:47
good care,
32:48
and
32:48
you can ask them
32:49
where
32:49
they're
32:50
going
32:50
for care.
32:51
just
32:51
kind of
32:51
as a as
32:52
a note,
32:52
if you are
32:53
looking
32:53
for a
32:53
doctor
32:54
outside
32:54
of your
32:55
location,
32:56
that you
32:56
might
32:56
consider
32:57
asking
32:57
for
32:57
referrals
32:58
to
32:58
doctors
32:59
who can
32:59
see you
32:59
via
33:00
telehealth,
33:00
right?
33:01
You don't
33:01
necessarily
33:02
always
33:02
have
33:02
to be
33:03
in
33:03
the office
33:03
to have a
33:04
doctor's
33:04
appointment.
33:05
And
33:05
that's
33:05
one
33:05
of the
33:05
beautiful
33:06
things
33:06
that that
33:07
the whole
33:07
pandemic
33:07
situation
33:08
gave us
33:08
was the
33:09
possibility
33:09
and the
33:10
confidence
33:11
that
33:11
telehealth
33:11
can still
33:12
be
33:12
helpful.
33:13
and so
33:14
trusting
33:14
in
33:14
that as
33:15
an avenue.
33:15
but
33:16
I think
33:16
that,
33:17
the other
33:17
kind of
33:18
main
33:18
piece was
33:18
that,
33:19
well,
33:19
that
33:19
Karen
33:20
said,
33:20
you know,
33:20
take the
33:20
Facebook
33:21
group,
33:21
of
33:21
course,
33:21
but also
33:22
take it
33:22
to the
33:23
sources,
33:23
find the
33:24
research
33:25
articles,
33:25
find
33:26
the podcast
33:26
episodes,
33:27
find our
33:27
YouTube
33:27
channel
33:28
and hit
33:28
subscribe,
33:30
subscribe
33:30
by by
33:31
the end
33:31
of
33:31
the year
33:32
and
33:32
help us
33:32
get to
33:32
over a
33:33
thousand
33:33
subscribers,
33:34
you guys.
33:35
but,
33:36
we are
33:36
just
33:37
just a
33:37
to do
33:37
our own
33:38
horn
33:38
here.
33:38
We had a cure
33:39
in sight.
33:39
Have done
33:39
a lot of work
33:40
the last,
33:41
I don't
33:41
even know
33:42
how long.
33:42
Ten, 11
33:43
years
33:44
since
33:44
a cure
33:44
in sight
33:44
was
33:45
founded.
33:45
And
33:45
specifically
33:46
in the
33:46
last four
33:46
years,
33:46
we've
33:47
done
33:47
a lot
33:47
to make
33:47
sure
33:48
that we
33:48
as a team
33:49
are
33:49
bringing
33:49
you
33:49
the most
33:50
current
33:50
information
33:51
in the
33:51
ocular
33:52
melanoma
33:52
and the
33:52
uveal
33:53
melanoma
33:53
treatment
33:53
space.
33:54
We're
33:54
connected
33:55
with the
33:55
pharmaceutical
33:55
companies.
33:56
We
33:56
put out
33:57
information
33:58
in our
33:58
monthly
33:58
newsletter.
33:59
So
33:59
get on our
34:00
website,
34:00
go to
34:01
acureinsight.org
34:02
make sure
34:02
you
34:02
subscribe
34:03
to all
34:03
of the
34:03
different
34:04
channels
34:04
and places
34:05
you can
34:05
find us.
34:05
Social
34:06
media.
34:06
YouTube,
34:07
the podcast,
34:08
but also
34:09
subscribe
34:09
on the
34:10
button
34:10
to that
34:10
newsletter
34:11
so that
34:11
you can
34:11
get the
34:12
information
34:12
to your
34:13
inbox
34:13
once
34:13
a month
34:14
and
34:14
you can
34:14
see
34:15
what's
34:15
going on.
34:15
It might be
34:16
research,
34:16
it
34:17
might be events
34:17
where you
34:18
can
34:18
connect
34:18
with
34:18
patients.
34:19
but
34:19
we will
34:19
also just
34:20
make sure
34:20
that you
34:21
have
34:21
access
34:21
to
34:22
the resources
34:22
that
34:22
we are
34:23
aware of
34:24
as we
34:24
learn of them.
34:25
And
34:25
that could
34:25
also
34:26
include
34:26
things
34:26
travel
34:26
aid and
34:27
ideas
34:28
for how
34:28
you can
34:28
get
34:28
financial
34:29
aid if
34:29
needed.
34:30
because
34:30
people
34:30
Karen,
34:31
you guys
34:31
are in
34:31
the
34:31
middle of
34:32
nowhere,
34:32
and
34:32
it might
34:32
not be
34:33
feasible
34:33
to travel
34:34
cross-country
34:35
without
34:35
some help.
34:36
So
34:36
we want
34:36
you
34:36
to know
34:37
that that
34:37
stuff is
34:37
out
34:38
there.
34:38
So,
34:39
I guess,
34:40
Karen,
34:40
my
34:40
feeling
34:41
is,
34:41
you know,
34:41
the
34:41
ultimate,
34:43
the ultimate
34:43
question
34:44
that
34:44
we've
34:44
been
34:44
trying
34:44
to answer
34:45
is, okay,
34:45
I don't have answers.
34:47
And
34:47
that's
34:47
a really
34:47
uncomfortable
34:48
place
34:48
to be.
34:49
And so
34:49
what
34:50
can I do?
34:51
And
34:51
the answer
34:51
is that
34:52
there's
34:52
there's
34:52
a lot.
34:53
Right.
34:53
there's
34:53
a lot
34:53
you can
34:54
do.
34:54
Right.
34:55
You need to
34:56
reach out
34:57
to the,
34:58
other
34:59
ocular
34:59
melanoma
35:00
patients,
35:01
first of all,
35:02
because
35:02
there's a
35:03
lot of us
35:03
in the
35:04
group.
35:04
And that,
35:05
first of
35:05
all, is
35:05
your best
35:06
support
35:07
people
35:07
who
35:08
understand
35:08
what
35:09
you're
35:09
going
35:09
through.
35:10
And then
35:10
secondly,
35:11
make sure
35:11
that you
35:12
have,
35:12
and, team
35:13
B, your
35:14
medical
35:14
oncologist
35:15
and your
35:16
ocular
35:16
oncologist
35:17
that
35:17
you trust
35:18
and you
35:18
feel
35:19
you're
35:19
getting
35:19
the
35:19
answers
35:20
and the
35:20
support
35:21
that
35:21
you need.
35:22
And then
35:22
thirdly,
35:23
go out
35:24
and
35:24
research
35:25
the
35:25
things
35:25
that you
35:26
don't
35:26
understand.
35:27
If you're
35:27
not
35:28
understanding
35:29
from the
35:29
very
35:29
beginning,
35:30
your
35:30
diagnosis,
35:32
or
35:32
certain,
35:33
terms
35:34
there's
35:34
a lot of
35:35
new
35:35
language
35:36
that is coming up
35:37
and
35:38
we don't
35:38
understand
35:38
even,
35:39
you know,
35:40
what the
35:41
class
35:41
means,
35:42
or the
35:42
prame
35:43
diagnosis
35:44
means.
35:45
And then
35:45
going
35:46
down
35:46
the line,
35:46
you know,
35:47
what what
35:48
the
35:48
different
35:48
treatments,
35:49
you know,
35:50
the
35:50
ablation
35:52
or
35:52
histotripsy
35:53
See
35:54
if those terms
35:55
you don't
35:55
understand.
35:56
Then I go
35:57
to
35:57
the internet
35:58
and I
35:58
would find out
35:59
what do they
35:59
mean.
36:00
And then
36:01
further
36:01
than that
36:02
I would
36:02
go to
36:03
somebody
36:03
who
36:03
has had
36:04
those
36:04
treatments
36:05
and ask
36:06
them,
36:07
how have those
36:08
treatments,
36:09
how
36:09
have you
36:10
been
36:10
affected
36:10
by those
36:11
treatments?
36:11
So
36:12
I think
36:12
it's a
36:13
full
36:13
circle.
36:13
There
36:14
too,
36:14
because
36:15
not only
36:15
do
36:16
you want
36:16
to know
36:16
the
36:16
clinical
36:17
understanding
36:18
of them,
36:18
but
36:19
you also
36:19
want
36:19
to have
36:19
that
36:20
context
36:21
of how
36:21
has it affected
36:22
the person
36:22
who's had
36:23
the treatment.
36:24
So
36:24
I think
36:25
that kind
36:25
of
36:25
knowledge,
36:26
bringing it
36:27
all back
36:27
together,
36:28
has
36:28
helped me
36:30
understand
36:30
that it's
36:31
not so
36:31
scary
36:32
that,
36:33
you know,
36:33
yes,
36:34
we
36:34
are all
36:35
facing
36:35
this.
36:35
Yes, that
36:36
those are
36:37
possibilities.
36:38
we may have
36:39
not cross
36:39
that
36:39
bridge
36:40
yet, but
36:40
for me
36:41
to be
36:42
somewhat
36:43
prepared
36:44
that that
36:44
maybe
36:45
something
36:45
that I
36:46
might be
36:46
going
36:46
through
36:47
helps
36:47
me understand
36:48
that it's
36:49
not going
36:50
to be
36:51
so bad,
36:52
if
36:52
you will,
36:53
because I
36:53
do have
36:54
options
36:54
out there
36:54
and
36:55
there are
36:55
treatments
36:55
available,
36:56
and I
36:57
can
36:57
talk to
36:57
my doctors
36:58
about it
36:58
when and
36:59
when
36:59
and
36:59
if the
37:00
time
37:00
comes.
37:01
Yeah.
37:02
Well, and
37:02
and you
37:03
might
37:03
feel it
37:04
helps to
37:05
initially
37:05
when you're
37:06
diagnosed
37:06
I know
37:07
I was
37:07
this
37:07
sometimes
37:08
it might
37:08
just help
37:08
to talk
37:09
about
37:09
the
37:09
possibilities
37:10
with your
37:11
doctor.
37:11
Right.
37:11
And to
37:12
just have
37:12
that
37:12
conversation
37:13
of,
37:13
okay,
37:14
well,
37:14
hypothetically,
37:15
if
37:15
it were
37:16
as bad
37:16
as I'm
37:16
afraid
37:16
it
37:17
could be
37:17
walk me
37:18
through
37:18
what could
37:19
happen.
37:20
and I'm
37:20
pretty
37:21
sure
37:21
we have
37:21
patients
37:21
who are
37:22
therapists
37:22
or
37:22
psychologists
37:23
who would
37:23
tell us
37:23
that
37:23
some form
37:24
of CBT
37:25
or
37:25
cognitive
37:25
behavioral
37:26
therapy
37:26
to walk
37:27
yourself
37:27
through
37:28
the.
37:28
Okay,
37:29
yes,
37:29
let's
37:29
pretend
37:30
it is
37:30
worst
37:30
case
37:30
scenario.
37:31
What do we do
37:32
that and
37:32
give yourself
37:33
an
37:33
opportunity
37:34
to to
37:34
structure
37:35
a
37:35
hypothetical plan
37:37
that
37:37
that is
37:38
so
37:38
reassuring
37:38
to me.
37:39
emotionally,
37:39
mentally
37:40
that
37:40
helps
37:40
my brain
37:41
turn off
37:41
the fight
37:42
or flight
37:42
mode
37:42
and go
37:43
into the
37:43
problem
37:44
solving
37:44
mode,
37:45
which
37:45
I think
37:45
that you
37:46
touched
37:46
on
37:46
this too,
37:47
is that
37:47
you
37:47
you look at
37:48
your scan
37:48
results.
37:49
I wanted
37:49
to point
37:49
this out
37:49
before
37:50
we end.
37:50
You look
37:51
at your
37:51
scan
37:51
results
37:51
before
37:52
you go
37:52
see
37:52
your doctor,
37:53
and
37:54
I cannot
37:54
tell you
37:54
how many
37:55
patients
37:55
I have
37:55
told
37:56
that I do
37:56
that,
37:56
that are
37:57
oh, I
37:57
don't think
37:57
I could
37:57
do that.
37:59
And
37:59
I just
38:00
would
38:00
challenge
38:00
you
38:00
to try it.
38:01
You won't know
38:02
what
38:02
you can
38:02
actually
38:03
handle
38:03
until
38:04
you do it.
38:04
And while
38:05
it can
38:05
feel
38:06
really
38:06
frustrating
38:06
to get
38:07
results
38:07
before
38:08
you have
38:08
a chance
38:08
to
38:08
talk to
38:09
your doctor,
38:10
if
38:10
you do
38:10
have that
38:11
opportunity
38:11
where
38:11
that's
38:12
how it's
38:12
given
38:12
to you,
38:13
it can
38:14
provide a
38:14
unique
38:15
chance
38:15
for you
38:15
to go to
38:16
the
38:16
appointment
38:17
prepared
38:17
with
38:17
the questions
38:18
and
38:18
not be
38:19
in the
38:19
middle
38:19
of an
38:19
emotional
38:20
fallout
38:20
during
38:21
the appointment.
38:22
And
38:22
I think
38:22
that's
38:22
what I
38:23
have
38:23
appreciated.
38:23
The longer
38:24
that I
38:24
have gone
38:24
through
38:24
this over
38:25
the last
38:25
four
38:25
years,
38:26
I have
38:26
appreciated
38:27
being
38:27
able to
38:27
get past
38:28
the
38:28
emotional
38:29
turmoil
38:29
on
38:29
my own,
38:30
or with
38:31
my
38:31
therapist,
38:31
or with
38:32
my family
38:32
and my
38:32
support
38:33
people,
38:33
and then
38:34
go to
38:34
my appointment
38:35
ready
38:35
to take
38:35
action,
38:36
ready
38:36
to
38:36
problem
38:37
solve,
38:37
and
38:37
kind of
38:37
puzzle
38:38
piece
38:38
with
38:38
my doctor.
38:39
that is so important.
38:40
And it it
38:41
I mean,
38:41
it's very
38:42
empowering
38:42
to me
38:43
because
38:43
then I
38:44
walk
38:44
out of
38:44
that
38:44
appointment
38:45
feeling
38:46
at least
38:46
I'm on
38:46
the right
38:47
path,
38:47
right?
38:47
Or I have
38:48
a direction
38:49
and not
38:49
okay,
38:49
I don't
38:50
know.
38:50
Now
38:50
I have to
38:51
wait
38:51
again
38:51
to even
38:52
find a
38:52
plan.
38:53
That
38:53
kind of
38:53
limbo
38:54
place
38:54
that
38:54
helps me
38:54
get
38:55
through
38:55
the limbo
38:55
faster.
38:57
and
38:57
of course,
38:58
you know,
38:58
disclaimer
38:59
we do
38:59
know that
38:59
sometimes
39:00
the time
39:01
is
39:01
a factor
39:02
and you
39:02
do have
39:02
to wait,
39:03
and
39:03
that's
39:03
hard.
39:04
so
39:04
anyway,
39:04
just
39:05
holding
39:05
space
39:05
for that.
39:05
But but I
39:06
love,
39:07
care.
39:07
And
39:07
I love
39:07
that
39:07
you just
39:08
talked
39:08
about,
39:08
you talked
39:09
about
39:09
this idea
39:09
that,
39:09
you know,
39:10
despite
39:11
all of
39:11
these
39:11
things,
39:12
you have
39:12
control
39:13
over how
39:13
you
39:13
obtain
39:14
information,
39:14
over how
39:15
you do
39:15
the research
39:16
and that
39:16
taking
39:16
that
39:17
control
39:17
helps
39:17
you
39:17
get
39:17
out of
39:18
the fear
39:18
and the
39:19
unknown
39:19
and the
39:20
kind of
39:20
stuck
39:20
feeling
39:21
in that
39:21
space.
39:22
so, yeah,
39:23
whether this
39:24
works
39:24
for you
39:24
or maybe
39:25
it might
39:25
help
39:26
somebody
39:26
that,
39:26
you know,
39:26
please
39:27
consider
39:27
sharing
39:27
this
39:27
episode
39:28
and
39:28
share it
39:28
with
39:29
somebody
39:29
else.
39:29
Karen,
39:30
do
39:30
you have
39:30
anything
39:30
you
39:30
want
39:30
to say as
39:31
we end?
39:32
No, but
39:33
I just
39:33
want to
39:33
thank
39:33
you,
39:34
danet
39:34
for all that
39:35
you're
39:35
doing.
39:35
I mean,
39:35
you're
39:36
reaching
39:36
out and
39:37
educating
39:37
people,
39:37
and
39:38
this is
39:38
what we
39:38
need.
39:39
We need
39:39
to make
39:39
sure
39:40
that we
39:40
help each
39:41
other
39:41
through
39:41
this process
39:42
because
39:42
it is
39:43
scary.
39:44
It
39:44
there are a lot
39:45
of
39:45
unknowns.
39:46
And the
39:46
more
39:46
we do
39:47
things
39:47
this
39:48
to help
39:48
each
39:48
other,
39:49
the more ease
39:50
we can
39:51
bring,
39:51
our
39:51
fellow
39:52
OMies.
39:53
So
39:53
thank you
39:53
again.
39:54
Yes.
39:55
No, I
39:55
love it.
39:56
And I'm
39:56
sitting
39:56
here
39:56
going,
39:57
Disney,
39:57
we're all
39:58
in this
39:59
together.
40:00
I don't know
40:00
if
40:00
you know
40:01
High
40:01
School
40:01
Musical
40:02
for many
40:02
grandkids,
40:03
but you
40:03
guys we
40:03
really
40:03
are in
40:04
this
40:04
together
40:04
with you.
40:04
We are
40:05
so together.
40:06
So
40:06
if you have
40:07
any things
40:07
you want
40:08
to ask,
40:08
drop
40:08
comments
40:09
on this.
40:09
on this
40:09
episode.
40:10
Feel free
40:10
to share
40:10
this with
40:11
family
40:11
and
40:11
friends.
40:12
Make sure
40:12
to
40:12
subscribe
40:13
and
40:13
we will
40:13
see
40:13
you guys
40:14
next
40:14
time.
40:15
All
40:15
right.
40:15
Thanks.