[Music]
[Applause]
[Music]
[Music]
the dictionary definition of rare is
stated as this occurring far apart in
time unusual or uncommon and when we
hear the word rare our brains check out
and we automatically think that this can
never happen to me but not once and that
definition does it say the word
impossible okay coming back to that in a
minute I’m assuming that many of you are
not familiar with IBC and if you think
you are you’re probably thinking of IBS
which is irritable bowel syndrome the
two are very different but equally is
hard to talk about IBC is short for
inflammatory breast cancer and it is so
rare that society deems it as
unimportant because we are all a little
bit guilty of not fully caring or
understanding about something until it
is directly affecting us and that’s
exactly how I felt I’d never heard of it
didn’t know anything about it and
therefore didn’t care until November of
2016 when my mom was diagnosed i bc is
an extremely rare form of breast cancer
that makes up only 1% of the entire
population it makes up only about 5% of
all breast cancer diagnoses it is the
cancer of the lymphatic system meaning
that it will always attack the lymph
nodes but seeks refuge in the layers of
skin on the breast which makes it very
aggressive and seemingly undetectable
through normal mammogram or blood work
it is the breast cancer that consists of
no lumps and no common warning signs
just a rash some discoloration and pain
that will occur quickly in the span of
about three days to a week and although
it may just simply be a rash that can be
cured with a few creams or antibiotics
if it has not drastically improved with
about in about three days then you
should seek the help of a specialist
because there’s a chance something is
wrong
my mom’s story started with a small rash
on her left breast and we didn’t think
much of it because why would we it’s
just a rash then some time went on and
my mom developed a dull pain in the same
breast so being a little concerned she
did what anyone would
and went to our family doctor and he
assured us that it was just a case of
the wrong bra size so we went and had
her fitted for new bras no change new
doctor another routine check from a
second doctor and showed us that it was
simply a sunburn which made sense at the
time because we live in Texas which is
known for its blistering heat just try
and stay out of the Sun and if you do go
out either cover up or apply lots of
sunscreen easy enough right
no change new doctor and by this time my
mom had developed a little bit of fear
but it was not enough to push the
doctors for more answers because after
all it was just a rash another check it
from a third doctor ensured us that all
it took to rid her of this pesky rash
that had now transformed into a much
bigger one was a simple was a simple
change in diet which kind of forced my
family to change our eating habits and
go for the healthier options at the
grocery store which didn’t go over well
with my seven-year-old sister Daisy Mae
there was still no change and by that
time that dull pain turned into an
almost unbearable one that spread from
her left breast down her arm and all
throughout the left side of her body so
you know how everyone tells you never to
look up your symptoms online because the
results are always way worse than your
slight sore throat or cold well my mom
did anyway and it saved her life
she took to the Internet and what she
found was devastating because on that
website the computer screen flashed the
words inflammatory breast cancer and a
sense of panic overcame her but was not
enough to provide permanent fear because
after all we had had three other doctors
insurace that she was fine so a couple
more months went by and we returned to
our primary doctor with our new concerns
and he laughed I have been in this
profession for years and I have never
had a case of ibc with any of my
patients I assure you that is not what
it is it is just too rare but what do we
remember from the definition I
previously stated rare does not mean
impossible so my mom was not convinced
this was not just a tip
Rashed i would go away in a matter of
days it had already been months and it
was excruciating ly painful so she went
had a mammogram done it came back clear
she had some blood work all normal so
what was the cause of this rash and pain
we then set out the help of a specialist
an oncologist from Baylor Scott and
White Hospital in Dallas
she took one look at my mom’s condition
and sent her in for an emergency biopsy
and that biopsy confirmed what the
mammogram could not my mom had Stage
four inflammatory breast cancer in those
months she spent fighting and pushing
the doctors to do more tests the cancer
was spreading rapidly through her body
affecting not only her breasts but her
lymph node liver and bones the months
after my mom was diagnosed the house was
silent the only noise heard or the soft
sobs of each one of my family members in
different rooms of the house because no
one could bear to speak to each other
and no one wanted to come to the
realization but in a few years my mom
might not be with us when my mom was
diagnosed she said it was as if her
whole body went numb because the only
thing going through her mind was the
words on that computer screen that
flashed the words no survivors every
single case of stage four inflammatory
breast cancer has been fatal and the
reason that is is not only because it is
aggressive and quick to kill everything
in its path but because no one knows
about it according to the inflammatory
breast cancer research foundation the
treatment options for IBS er pretty
common with other forms of cancer
targeted chemotherapies radiation
treatments and surgery if that option is
available and by that I mean if the
cancer has spread to numerous parts of
the body like my mom’s case surgery is
virtually useless the only surgery my
mom had to undergo was a full moon for
ectomy which removed her ovaries and
tubes because that is the part of the
body that produces a lot of the female
sex hormone estrogen and my mom’s cancer
is estrogen receptive or er PR positive
which means that the
sturgeon ultimately feeds the cancer so
the surgery was to prevent any
unnecessary reason why the cancer could
spread and we had already gone through
countless hours waiting in treatment
holding my mom’s hand as the medicine
burned through her body killing both
good and bad cells and weeks and weeks
of this went by and we all knew that
what was next was far more frightening
than the original diagnosis it was the
appointment to see if the treatment had
been working and we waited for what felt
like an eternity and we finally received
a phone call that would change the
course of everything because it was
working the cancer had disappeared from
all parts of my mom’s body except the
liver so today she remains on an oral
chemotherapy which acts as an estrogen
blocker and keeps the cancer in her
liver at bay and she also has to work to
keep her weight at a healthy level
because that too can cause the cancer to
flare up and attack all over again
but overall her health is improving and
she is living her life to the fullest
you see the doctor gave my mom a
prognosis of three to five years of life
and we are making the most of them we go
on trips as a family we document moments
that make a smile and we keep each other
as our number one priority
and already she has become an advocate
with her work through love is greater
than cancer by talking to local people
in our community and local health
professionals who can learn from her PET
scans and biopsy results she has also
been featured in several news stories
and magazine articles all across the
world news stories that have been spread
from near and far in her local news
story has even won an Emmy Award because
of just one more person learns about IBC
it can spark a chain reaction of people
advocating their health and the health
of others take the story of Kate for
example kate is a woman who was sitting
at home watching TV when my mom’s a news
story went live she noticed that she was
having similar symptoms with my mom but
the doctors had already pushed her fears
of the rare disease aside a few days
later we received a Facebook message
from Kate telling us that she went back
to the doctor and pushed
her own answers and she was diagnosed
with stage 3c inflammatory breast cancer
which is one stage before stage four and
suggests that the cancer has spread to
her lymph nodes and nowhere else my mom
having the courage to speak up about her
experience about with IBC and Cate
having the courage to go back and fight
gave her a few more days on this earth
and my mom was given and who knows how
many other people went to speak to their
doctors and that is powerful and that is
using this tragedy for something good
but now I want you to hear it from my
mom herself I had no idea the response
that I would get and it’s been kind of
it’s not easy to talk about something
once I started talking about my journey
is no longer about me dad
that inhale it’s about everybody that
comes out and I just want to help them
[Music]
I still have a ton of hope and a very
and very strong faith I’m nowhere near
stopping my fight but to think that I
can maybe help somebody in theirs or
even better prevent someone from having
to go through what I’m going through
makes me feel like all this is is in a
weird way worth it
[Music]
you sort of go through life sort of
wondering what’s your purpose joined to
be the best mom the best wife the best
dot are the best friend so this is a new
role for me and I’m gonna do the best
that I can it it makes me feel really
good
that’s why I did that’s why I spoke and
put myself out there is for that
and I want to carry on that legacy and
pass on the message that when it comes
to you in your health
you fight for answers when you feel like
there is something wrong because the
only person who knows what you are
feeling is you you are your own advocate
and I know is tough to argue with
professionals but even they make
mistakes we are not angry with the
doctors who misdiagnosed my mom in the
beginning because it was an issue of
unawareness not lack of caring but even
then you must speak up and fight for
your life because it could potentially
save it there is a known barrier between
institution and intuition and people
tend to be afraid when the institution
is telling them that no you are fine
there is no need to refer you to a
specialist but speak up and have a voice
life is too precious to be second
guessing and not following your
intuition go with your gut and listen to
what your body is telling you and yes it
is frustrating to think that if we had
just caught it a few months earlier
there would not nearly be as much
heartache but then again I would not be
given the chance to stand up here in
front of all of you and speak about the
important issue of self-advocacy so
speak up and when they try and tell you
that it is just too rare look them
straight in the eyes and say but rare
[Applause]
[Music]
[Applause] [Music]
[Applause]
[Music]
[Music]
the dictionary definition of rare is
stated as this occurring far apart in
time unusual or uncommon and when we
hear the word rare our brains check out
and we automatically think that this can
never happen to me but not once and that
definition does it say the word
impossible okay coming back to that in a
minute I’m assuming that many of you are
not familiar with IBC and if you think
you are you’re probably thinking of IBS
which is irritable bowel syndrome the
two are very different but equally is
hard to talk about IBC is short for
inflammatory breast cancer and it is so
rare that society deems it as
unimportant because we are all a little
bit guilty of not fully caring or
understanding about something until it
is directly affecting us and that’s
exactly how I felt I’d never heard of it
didn’t know anything about it and
therefore didn’t care until November of
2016 when my mom was diagnosed i bc is
an extremely rare form of breast cancer
that makes up only 1% of the entire
population it makes up only about 5% of
all breast cancer diagnoses it is the
cancer of the lymphatic system meaning
that it will always attack the lymph
nodes but seeks refuge in the layers of
skin on the breast which makes it very
aggressive and seemingly undetectable
through normal mammogram or blood work
it is the breast cancer that consists of
no lumps and no common warning signs
just a rash some discoloration and pain
that will occur quickly in the span of
about three days to a week and although
it may just simply be a rash that can be
cured with a few creams or antibiotics
if it has not drastically improved with
about in about three days then you
should seek the help of a specialist
because there’s a chance something is
wrong
my mom’s story started with a small rash
on her left breast and we didn’t think
much of it because why would we it’s
just a rash then some time went on and
my mom developed a dull pain in the same
breast so being a little concerned she
did what anyone would
and went to our family doctor and he
assured us that it was just a case of
the wrong bra size so we went and had
her fitted for new bras no change new
doctor another routine check from a
second doctor and showed us that it was
simply a sunburn which made sense at the
time because we live in Texas which is
known for its blistering heat just try
and stay out of the Sun and if you do go
out either cover up or apply lots of
sunscreen easy enough right
no change new doctor and by this time my
mom had developed a little bit of fear
but it was not enough to push the
doctors for more answers because after
all it was just a rash another check it
from a third doctor ensured us that all
it took to rid her of this pesky rash
that had now transformed into a much
bigger one was a simple was a simple
change in diet which kind of forced my
family to change our eating habits and
go for the healthier options at the
grocery store which didn’t go over well
with my seven-year-old sister Daisy Mae
there was still no change and by that
time that dull pain turned into an
almost unbearable one that spread from
her left breast down her arm and all
throughout the left side of her body so
you know how everyone tells you never to
look up your symptoms online because the
results are always way worse than your
slight sore throat or cold well my mom
did anyway and it saved her life
she took to the Internet and what she
found was devastating because on that
website the computer screen flashed the
words inflammatory breast cancer and a
sense of panic overcame her but was not
enough to provide permanent fear because
after all we had had three other doctors
insurace that she was fine so a couple
more months went by and we returned to
our primary doctor with our new concerns
and he laughed I have been in this
profession for years and I have never
had a case of ibc with any of my
patients I assure you that is not what
it is it is just too rare but what do we
remember from the definition I
previously stated rare does not mean
impossible so my mom was not convinced
this was not just a tip
Rashed i would go away in a matter of
days it had already been months and it
was excruciating ly painful so she went
had a mammogram done it came back clear
she had some blood work all normal so
what was the cause of this rash and pain
we then set out the help of a specialist
an oncologist from Baylor Scott and
White Hospital in Dallas
she took one look at my mom’s condition
and sent her in for an emergency biopsy
and that biopsy confirmed what the
mammogram could not my mom had Stage
four inflammatory breast cancer in those
months she spent fighting and pushing
the doctors to do more tests the cancer
was spreading rapidly through her body
affecting not only her breasts but her
lymph node liver and bones the months
after my mom was diagnosed the house was
silent the only noise heard or the soft
sobs of each one of my family members in
different rooms of the house because no
one could bear to speak to each other
and no one wanted to come to the
realization but in a few years my mom
might not be with us when my mom was
diagnosed she said it was as if her
whole body went numb because the only
thing going through her mind was the
words on that computer screen that
flashed the words no survivors every
single case of stage four inflammatory
breast cancer has been fatal and the
reason that is is not only because it is
aggressive and quick to kill everything
in its path but because no one knows
about it according to the inflammatory
breast cancer research foundation the
treatment options for IBS er pretty
common with other forms of cancer
targeted chemotherapies radiation
treatments and surgery if that option is
available and by that I mean if the
cancer has spread to numerous parts of
the body like my mom’s case surgery is
virtually useless the only surgery my
mom had to undergo was a full moon for
ectomy which removed her ovaries and
tubes because that is the part of the
body that produces a lot of the female
sex hormone estrogen and my mom’s cancer
is estrogen receptive or er PR positive
which means that the
sturgeon ultimately feeds the cancer so
the surgery was to prevent any
unnecessary reason why the cancer could
spread and we had already gone through
countless hours waiting in treatment
holding my mom’s hand as the medicine
burned through her body killing both
good and bad cells and weeks and weeks
of this went by and we all knew that
what was next was far more frightening
than the original diagnosis it was the
appointment to see if the treatment had
been working and we waited for what felt
like an eternity and we finally received
a phone call that would change the
course of everything because it was
working the cancer had disappeared from
all parts of my mom’s body except the
liver so today she remains on an oral
chemotherapy which acts as an estrogen
blocker and keeps the cancer in her
liver at bay and she also has to work to
keep her weight at a healthy level
because that too can cause the cancer to
flare up and attack all over again
but overall her health is improving and
she is living her life to the fullest
you see the doctor gave my mom a
prognosis of three to five years of life
and we are making the most of them we go
on trips as a family we document moments
that make a smile and we keep each other
as our number one priority
and already she has become an advocate
with her work through love is greater
than cancer by talking to local people
in our community and local health
professionals who can learn from her PET
scans and biopsy results she has also
been featured in several news stories
and magazine articles all across the
world news stories that have been spread
from near and far in her local news
story has even won an Emmy Award because
of just one more person learns about IBC
it can spark a chain reaction of people
advocating their health and the health
of others take the story of Kate for
example kate is a woman who was sitting
at home watching TV when my mom’s a news
story went live she noticed that she was
having similar symptoms with my mom but
the doctors had already pushed her fears
of the rare disease aside a few days
later we received a Facebook message
from Kate telling us that she went back
to the doctor and pushed
her own answers and she was diagnosed
with stage 3c inflammatory breast cancer
which is one stage before stage four and
suggests that the cancer has spread to
her lymph nodes and nowhere else my mom
having the courage to speak up about her
experience about with IBC and Cate
having the courage to go back and fight
gave her a few more days on this earth
and my mom was given and who knows how
many other people went to speak to their
doctors and that is powerful and that is
using this tragedy for something good
but now I want you to hear it from my
mom herself I had no idea the response
that I would get and it’s been kind of
it’s not easy to talk about something
once I started talking about my journey
is no longer about me dad
that inhale it’s about everybody that
comes out and I just want to help them
[Music]
I still have a ton of hope and a very
and very strong faith I’m nowhere near
stopping my fight but to think that I
can maybe help somebody in theirs or
even better prevent someone from having
to go through what I’m going through
makes me feel like all this is is in a
weird way worth it
[Music]
you sort of go through life sort of
wondering what’s your purpose joined to
be the best mom the best wife the best
dot are the best friend so this is a new
role for me and I’m gonna do the best
that I can it it makes me feel really
good
that’s why I did that’s why I spoke and
put myself out there is for that
and I want to carry on that legacy and
pass on the message that when it comes
to you in your health
you fight for answers when you feel like
there is something wrong because the
only person who knows what you are
feeling is you you are your own advocate
and I know is tough to argue with
professionals but even they make
mistakes we are not angry with the
doctors who misdiagnosed my mom in the
beginning because it was an issue of
unawareness not lack of caring but even
then you must speak up and fight for
your life because it could potentially
save it there is a known barrier between
institution and intuition and people
tend to be afraid when the institution
is telling them that no you are fine
there is no need to refer you to a
specialist but speak up and have a voice
life is too precious to be second
guessing and not following your
intuition go with your gut and listen to
what your body is telling you and yes it
is frustrating to think that if we had
just caught it a few months earlier
there would not nearly be as much
heartache but then again I would not be
given the chance to stand up here in
front of all of you and speak about the
important issue of self-advocacy so
speak up and when they try and tell you
that it is just too rare look them
straight in the eyes and say but rare
[Applause]
[Music]
[Applause] [Music]
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