so at the age of 38 I was diagnosed with
inflammatory breast cancer I had never
even heard of inflammatory breast cancer
until I googled my symptoms when I
called the doctor’s office the nurse
said she had never heard of inflammatory
breast cancer the doctor said that he
had seen four cases throughout his
career and he assured me that I did not
have inflammatory breast cancer but the
reality is I did we had been living in
South Dakota for five years on the
Rosebud reservation so we were three and
a half hours away from a major Medical
Center so the doctor had said that we
might want to consider going back to
where we were from for treatment it
turns out that only three to five
percent of all breast cancer is
inflammatory and there may be times in
life where you want to be special but
this was not one of those times so we
consulted with an oncologist here and he
agreed that we were in trouble and we
needed to get help quickly inflammatory
breast cancer is highly aggressive and
Thomas of the essence so we left that
oncologist office and we went to North
Carolina that night to seek treatment
the doctor that we had in North Carolina
was familiar with inflammatory breast
cancer and he wouldn’t speculate as to
our odds of beating the disease but he
did say that we would have to go through
treatment for a year and that during
that year I wouldn’t need to be at the
cancer center a minimum of one day a
week so we realized then that really our
best option was to resign the jobs that
we loved and leave the state that we
loved and go back to calling North
Carolina home that
was not a pivot in our life that we had
expected
we had three daughters they were 17 12
and 10 so you can imagine how difficult
that was so all through treatment I
would just say to myself Doris this is
just a bump in the road of life you’re
going to get through this and one day
you’re going to look back and it’s just
a bump in the road so a few weeks into
treatment my hair started falling out
well I had wanted to hold on to my hair
for as long as I could I had gotten a
wig but I just wasn’t ready to let go of
my hair and we had been invited to a 4th
of July picnic at the home of some
friends and unbeknownst to me their
daughter was a beautician and she had a
beauty shop in their backyard in their
garage so at the picnic she very
graciously and lovingly ran her fingers
through my hair and said Doris it’s time
she said it’s coming out in handfuls and
it’s not going to get any better so that
night after it got dark she took me in
her beauty salon and she shaved my head
now one of my friend said what did she
say when she shaved her head and I’m
like what was she supposed to say she
told me I had a beautiful head so I left
the picnic that night with her mother’s
scarf on my head and so the next morning
we were getting ready to go to church
and I was not sure what it would be like
to wear my wig for the first time in
part because when I went to get the wig
I remember standing in the wig store
thinking wow I can get whatever kind of
hair I want I had been gray for years so
I had always heard that blondes have
more fun
so this is what I came home with so I
just wasn’t sure what that would be like
so being from the south my family were
all NASCAR fans and Dale Earnhardt jr.
was our favorite driver
and at the time he drove the car number
eight so somehow about morning we
decided that it would be a good idea in
part because we knew that we would see
our friend Jim at church he had a great
big heart and he had taken us to the
Daytona 500 earlier in the year so we
decided that we would take a red sharpie
and put a big fat number eight on the
back of my bald head
so our oldest daughter did it and my
husband signed his name to trying to
look like his autograph
we put my wig on and off we go to church
so after Sunday school we called Jim
over and we said hey Jim and Jim’s a big
guy and he’s looking down at me and I
said did you hear what they found when
Jennifer shaved my head last night and
his face lost all color I felt bad for
just a minute but then I turned around
and lifted up the back of my wig and
showed him my new junior tattoo when I
turned back around his face had gone
from ash white to beet red you know a
merry heart is good medicine when you’re
hitting bumps in the road so all through
treatment I heard people talk about this
new normal you know you think you’re
going to get to the end of treatment
life’s going to go back to normal they
talked about the new normal almost like
it was a promised land like I expected
to hit this place where everything was
good I felt good and things seemed
normal again well you can imagine how
much anticipation you have for that when
you’re going through cancer treatment so
I had been told that the amount of time
it took for the medicine to get into
your system was the amount of time it
would take for the medicine to come out
of your system for the side effects to
leave so for me that was about a year so
you can imagine my surprise when I hit
the year-and-a-half mark from the end of
treatment and not only
my side-effects not gone away they had
gotten worse I was having intense pain
and my jaw my shoulder my neck and so of
course in the back of my head I’m
thinking it’s cancer so I go to the
oncologist and he did some tests and
he’s like nope nope it’s not cancer I’m
like well then what is it
he’s like I don’t know so I bounced
bounced around to different doctors and
nobody could really tell me what was
going on and so then they decided that I
had anxiety and I was like seriously
like you people can’t tell me why I’m in
so much pain you gave me anxiety so it
was mostly out of frustration that I
started researching and what I found in
my research was something I was not
prepared for do you guys know that one
in three cancer survivors suffer with
chronic pain one in three now one thing
that I’ve learned is that we are really
really good at coming along beside
people when they’re in the fight I am so
thankful for the people who came
alongside me I could not have done it
without them but I also know that when
we get to the end of treatment people
around us tend to expect us to just move
on you know you finished you survived
you’re done it’s good if you’re 1 in 3
that suffer with chronic pain moving on
is not so easy this is my friend Renee
Renee was a NICU nurse for 26 years she
was three and a half years away from
retirement when she was diagnosed with
breast cancer she had to leave her job
because she could no longer be at her
best for her patients these are her
words people tell me every day how good
I look I wish I felt that good because
this pain is no joke
chemotherapy saved my life but the
side effects are awful I usually wake up
around 3:30 with really bad pain my body
hurts so bad at times neuropathy is bad
especially in my right hand and left
foot
I have lymphedema and my right arm I
really don’t like to take all this
medicine but to be able to walk and try
to have some kind of normal life I have
to who should tell her just to move on
but somebody recently said you look so
good why aren’t you back at work now I
want to say it’s not easy for me to talk
about these things for a lot of reasons
but I choose to talk about it because I
didn’t know until I walked on this road
I had no idea so there are some things
that I would like to give you to think
about many cancer survivors take
medicine to prevent a recurrence or
reduce the risk of recurrence a lot of
those medicines have very very difficult
side effects along with the side effects
or the cost of the medicines my
out-of-pocket expenses last year for
treatment related issues was over $5,000
that breaks down to about $100 a week
a fellow ibc survivor said the longer I
live the poor weekend if you are one of
those survivors it’s not so easy to act
like that’s not your reality then
there’s fear most breast cancer
survivors find that they are at a higher
risk for leukemia and other types of
cancer so not only do you deal with the
fear of breast cancer returning you also
deal with the fear of a secondary cancer
popping up these things are not easy let
me just give you a little glimpse into
what some of my daily life looks like
you see I have this Lee
on my arm I wear this sleeve because my
arm hurts and the sleeve helps it not
hurt it’s a compression sleeve so I’m in
the grocery store minding my own
business
getting my groceries perfect stranger
walks up to me now let me just say
before I had cancer I was a very private
person I would not want to be talking
about my body parts to total strangers
right person comes up oh what’d you do
to your arm well I’ve tried to answer
that question a bunch of different ways
haven’t found a good answer yet
so sometimes I say I had some surgery so
I have to wear this sleeve Oh what kind
of surgery did you have well I had
breast cancer did they take your breasts
off now I’m just gonna tell y’all you
take off your shoes you take off your
coat you hang them in the closet you
don’t just take off a breast and if this
is my breast and I don’t know you why
are you inquiring about the status of my
breast that’s just weird right I mean we
don’t ask people why they wear glasses
but yet I get asked about my sleeve more
times than I can count so there are
obviously things that survivors deal
with not every survivor deals with pain
or financial issues but a lot of them do
one fellow survivor said I don’t
understand why they call us survivors
when we finish treatment because I’m
still fighting long after I recently
polled a group of survivors and I said
if you had the opportunity to have
people know one thing what would you
want it to be their answers were
astounding because most of the answers
the most common thread was people don’t
understand my family my friends my
coworker they think I’m playing the
cancer card they think I just
move on or I’m just being lazy I spent
some time working in the Cancer Center
that I got treated in and working in the
Cancer Center I really realized how many
survivors suffer in silence and the
question that I have is why you know
we’ve come so far in cancer we talk
about it we’ve made advances we are
better outcomes
early detection more treatment options
but why is it that when we get to the
end of treatment we expect people to
move on and we don’t give them the
opportunity to voice what they’re
feeling one survivor said it’s possible
to be really really happy to have
survived and to be alive but it’s also
possible at the same time to be really
sad about what you’ve lost about losing
a body part or not having your normal
life back again those things can be
really difficult so I’m standing here
today as difficult as it is to say to
you please consider listening to the
survivors in your life I can’t tell you
how many times I have people say to me
but you’re alive aren’t you so the fact
that I’m alive shouldn’t take away my
ability to speak my truth especially not
in society today where everybody’s being
encouraged to speak up why is cancer
survivorship different so I’m
encouraging you to listen to the
survivors around you and when you listen
don’t listen to hear what you need to
hear right because everybody wants to
hear that you’re good you know
everything is good but really listen
– what they have to say because even the
most optimistic person should have the
right to have a bad day right so listen
with your ears to what they’re saying
and what you hear let it move down into
your heart and move your heart with
compassion and when I say compassion I
don’t mean sympathy because most of the
survivors that I deal with do not want
sympathy they just want understanding
and let that compassion move from your
heart to your hands and to your feet so
that you can be a support to the
survivors that are around you because if
your coworker your friend your family
member if they are struggling your
understanding means everything it’s
priceless so let that move to your hands
and your feet to support the people
around you and realize that every
survivor has a story and just like
you’ve listened to part of my story here
today I’m encouraging you to listen to
theirs
thank you [Applause]
inflammatory breast cancer I had never
even heard of inflammatory breast cancer
until I googled my symptoms when I
called the doctor’s office the nurse
said she had never heard of inflammatory
breast cancer the doctor said that he
had seen four cases throughout his
career and he assured me that I did not
have inflammatory breast cancer but the
reality is I did we had been living in
South Dakota for five years on the
Rosebud reservation so we were three and
a half hours away from a major Medical
Center so the doctor had said that we
might want to consider going back to
where we were from for treatment it
turns out that only three to five
percent of all breast cancer is
inflammatory and there may be times in
life where you want to be special but
this was not one of those times so we
consulted with an oncologist here and he
agreed that we were in trouble and we
needed to get help quickly inflammatory
breast cancer is highly aggressive and
Thomas of the essence so we left that
oncologist office and we went to North
Carolina that night to seek treatment
the doctor that we had in North Carolina
was familiar with inflammatory breast
cancer and he wouldn’t speculate as to
our odds of beating the disease but he
did say that we would have to go through
treatment for a year and that during
that year I wouldn’t need to be at the
cancer center a minimum of one day a
week so we realized then that really our
best option was to resign the jobs that
we loved and leave the state that we
loved and go back to calling North
Carolina home that
was not a pivot in our life that we had
expected
we had three daughters they were 17 12
and 10 so you can imagine how difficult
that was so all through treatment I
would just say to myself Doris this is
just a bump in the road of life you’re
going to get through this and one day
you’re going to look back and it’s just
a bump in the road so a few weeks into
treatment my hair started falling out
well I had wanted to hold on to my hair
for as long as I could I had gotten a
wig but I just wasn’t ready to let go of
my hair and we had been invited to a 4th
of July picnic at the home of some
friends and unbeknownst to me their
daughter was a beautician and she had a
beauty shop in their backyard in their
garage so at the picnic she very
graciously and lovingly ran her fingers
through my hair and said Doris it’s time
she said it’s coming out in handfuls and
it’s not going to get any better so that
night after it got dark she took me in
her beauty salon and she shaved my head
now one of my friend said what did she
say when she shaved her head and I’m
like what was she supposed to say she
told me I had a beautiful head so I left
the picnic that night with her mother’s
scarf on my head and so the next morning
we were getting ready to go to church
and I was not sure what it would be like
to wear my wig for the first time in
part because when I went to get the wig
I remember standing in the wig store
thinking wow I can get whatever kind of
hair I want I had been gray for years so
I had always heard that blondes have
more fun
so this is what I came home with so I
just wasn’t sure what that would be like
so being from the south my family were
all NASCAR fans and Dale Earnhardt jr.
was our favorite driver
and at the time he drove the car number
eight so somehow about morning we
decided that it would be a good idea in
part because we knew that we would see
our friend Jim at church he had a great
big heart and he had taken us to the
Daytona 500 earlier in the year so we
decided that we would take a red sharpie
and put a big fat number eight on the
back of my bald head
so our oldest daughter did it and my
husband signed his name to trying to
look like his autograph
we put my wig on and off we go to church
so after Sunday school we called Jim
over and we said hey Jim and Jim’s a big
guy and he’s looking down at me and I
said did you hear what they found when
Jennifer shaved my head last night and
his face lost all color I felt bad for
just a minute but then I turned around
and lifted up the back of my wig and
showed him my new junior tattoo when I
turned back around his face had gone
from ash white to beet red you know a
merry heart is good medicine when you’re
hitting bumps in the road so all through
treatment I heard people talk about this
new normal you know you think you’re
going to get to the end of treatment
life’s going to go back to normal they
talked about the new normal almost like
it was a promised land like I expected
to hit this place where everything was
good I felt good and things seemed
normal again well you can imagine how
much anticipation you have for that when
you’re going through cancer treatment so
I had been told that the amount of time
it took for the medicine to get into
your system was the amount of time it
would take for the medicine to come out
of your system for the side effects to
leave so for me that was about a year so
you can imagine my surprise when I hit
the year-and-a-half mark from the end of
treatment and not only
my side-effects not gone away they had
gotten worse I was having intense pain
and my jaw my shoulder my neck and so of
course in the back of my head I’m
thinking it’s cancer so I go to the
oncologist and he did some tests and
he’s like nope nope it’s not cancer I’m
like well then what is it
he’s like I don’t know so I bounced
bounced around to different doctors and
nobody could really tell me what was
going on and so then they decided that I
had anxiety and I was like seriously
like you people can’t tell me why I’m in
so much pain you gave me anxiety so it
was mostly out of frustration that I
started researching and what I found in
my research was something I was not
prepared for do you guys know that one
in three cancer survivors suffer with
chronic pain one in three now one thing
that I’ve learned is that we are really
really good at coming along beside
people when they’re in the fight I am so
thankful for the people who came
alongside me I could not have done it
without them but I also know that when
we get to the end of treatment people
around us tend to expect us to just move
on you know you finished you survived
you’re done it’s good if you’re 1 in 3
that suffer with chronic pain moving on
is not so easy this is my friend Renee
Renee was a NICU nurse for 26 years she
was three and a half years away from
retirement when she was diagnosed with
breast cancer she had to leave her job
because she could no longer be at her
best for her patients these are her
words people tell me every day how good
I look I wish I felt that good because
this pain is no joke
chemotherapy saved my life but the
side effects are awful I usually wake up
around 3:30 with really bad pain my body
hurts so bad at times neuropathy is bad
especially in my right hand and left
foot
I have lymphedema and my right arm I
really don’t like to take all this
medicine but to be able to walk and try
to have some kind of normal life I have
to who should tell her just to move on
but somebody recently said you look so
good why aren’t you back at work now I
want to say it’s not easy for me to talk
about these things for a lot of reasons
but I choose to talk about it because I
didn’t know until I walked on this road
I had no idea so there are some things
that I would like to give you to think
about many cancer survivors take
medicine to prevent a recurrence or
reduce the risk of recurrence a lot of
those medicines have very very difficult
side effects along with the side effects
or the cost of the medicines my
out-of-pocket expenses last year for
treatment related issues was over $5,000
that breaks down to about $100 a week
a fellow ibc survivor said the longer I
live the poor weekend if you are one of
those survivors it’s not so easy to act
like that’s not your reality then
there’s fear most breast cancer
survivors find that they are at a higher
risk for leukemia and other types of
cancer so not only do you deal with the
fear of breast cancer returning you also
deal with the fear of a secondary cancer
popping up these things are not easy let
me just give you a little glimpse into
what some of my daily life looks like
you see I have this Lee
on my arm I wear this sleeve because my
arm hurts and the sleeve helps it not
hurt it’s a compression sleeve so I’m in
the grocery store minding my own
business
getting my groceries perfect stranger
walks up to me now let me just say
before I had cancer I was a very private
person I would not want to be talking
about my body parts to total strangers
right person comes up oh what’d you do
to your arm well I’ve tried to answer
that question a bunch of different ways
haven’t found a good answer yet
so sometimes I say I had some surgery so
I have to wear this sleeve Oh what kind
of surgery did you have well I had
breast cancer did they take your breasts
off now I’m just gonna tell y’all you
take off your shoes you take off your
coat you hang them in the closet you
don’t just take off a breast and if this
is my breast and I don’t know you why
are you inquiring about the status of my
breast that’s just weird right I mean we
don’t ask people why they wear glasses
but yet I get asked about my sleeve more
times than I can count so there are
obviously things that survivors deal
with not every survivor deals with pain
or financial issues but a lot of them do
one fellow survivor said I don’t
understand why they call us survivors
when we finish treatment because I’m
still fighting long after I recently
polled a group of survivors and I said
if you had the opportunity to have
people know one thing what would you
want it to be their answers were
astounding because most of the answers
the most common thread was people don’t
understand my family my friends my
coworker they think I’m playing the
cancer card they think I just
move on or I’m just being lazy I spent
some time working in the Cancer Center
that I got treated in and working in the
Cancer Center I really realized how many
survivors suffer in silence and the
question that I have is why you know
we’ve come so far in cancer we talk
about it we’ve made advances we are
better outcomes
early detection more treatment options
but why is it that when we get to the
end of treatment we expect people to
move on and we don’t give them the
opportunity to voice what they’re
feeling one survivor said it’s possible
to be really really happy to have
survived and to be alive but it’s also
possible at the same time to be really
sad about what you’ve lost about losing
a body part or not having your normal
life back again those things can be
really difficult so I’m standing here
today as difficult as it is to say to
you please consider listening to the
survivors in your life I can’t tell you
how many times I have people say to me
but you’re alive aren’t you so the fact
that I’m alive shouldn’t take away my
ability to speak my truth especially not
in society today where everybody’s being
encouraged to speak up why is cancer
survivorship different so I’m
encouraging you to listen to the
survivors around you and when you listen
don’t listen to hear what you need to
hear right because everybody wants to
hear that you’re good you know
everything is good but really listen
– what they have to say because even the
most optimistic person should have the
right to have a bad day right so listen
with your ears to what they’re saying
and what you hear let it move down into
your heart and move your heart with
compassion and when I say compassion I
don’t mean sympathy because most of the
survivors that I deal with do not want
sympathy they just want understanding
and let that compassion move from your
heart to your hands and to your feet so
that you can be a support to the
survivors that are around you because if
your coworker your friend your family
member if they are struggling your
understanding means everything it’s
priceless so let that move to your hands
and your feet to support the people
around you and realize that every
survivor has a story and just like
you’ve listened to part of my story here
today I’m encouraging you to listen to
theirs
thank you [Applause]
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