good morning the yin-yang symbol for me
this represents my emotional side and my
analytical side most of my life these
have been in good balance but this was
my yin-yang symbol on November 3rd 2014
when I learned I had ovarian cancer my
emotional side took over completely it
was about a year before I could even
talk about my cancer diagnosis without
bursting into tears but gradually my
analytical side returned and when it did
I started making observations these
observations have led to an idea and it
is this idea that I bring to you today
the idea is not based on statistical
statistically significant data it is the
first part of the scientific process it
is based on observations it is an idea I
am extremely passionate about and I
believe it is an idea of worth spreading
a little about what makes me tick my mom
was a woman ahead of her time she still
is a woman ahead of her time she
graduated from Florida State University
in the 40s when most women did not go to
college there was no football team it
was an all woman’s college at the time
my dad’s career was in the field of
radiological physics he did cancer
research for radiation oncology he
worked at Johns Hopkins
Columbia University and Albert Einstein
Medical College our dog got cancer
breast cancer in the 70s and benefited
from this connection and was able to
participate in one of the experimental
treatments
I liked observation and observing things
and detective work from a young age I
can still hear my mother’s voice reading
Sherlock Holmes stories out loud in the
car on long car rides and in high school
I belonged to a treasure hunt club my
professional background is in GIS
geographic information systems spatial
analysis database code program debugging
software its own form of detective work
between the ages of 15 and 33 for people
very close to me passed away from cancer
my Uncle Eddie died of lung cancer
my cousin cookie passed away from breast
cancer
my cousin Liz passed away from
pancreatic cancer and in 1990 24 years
before my diagnosis my roommate in
Boston passed away from ovarian cancer
all of these deaths had a huge impact on
me and I was determined to do what I
could to prevent my self from having to
experience the ravages of a cancer
diagnosis so my analytical side stepped
back made some observations I saw some
risk factors so I made conscious
lifestyle decisions I ate well ate close
to the ground I exercise regularly I
never smoked and I’ve been doing yoga
and Tai Chi way before they were
featured in commercials
[Music]
teal teal is the color for ovarian
cancer my story of my diagnosis begins
in the spring of 2014 I experienced
three vague symptoms I had a bizarre
abdominal distension every evening that
was gone
every morning I had a persistent pain a
dull consistent persistent pain in my
right side in my lower back wouldn’t go
away physical therapy stretching you
name it ice heat nothing and then once
or twice a week I was nauseous after I
ate something for no particular reason I
went to the doctor and nothing was
identified about three months later I
was at my annual GYN checkup and my
gynecologist felt something suspicious
she ordered an ultrasound and it showed
there was a growth on my right ovary she
explained that you know there were
really good odds it was a benign ovarian
cyst but there was a chance it was an
ovarian cancer so cat-scan blood work
and an appointment about three weeks
later my husband and I are sitting in
the doctor’s office in the little room
at the oncologist office and my doctor
was explaining that in the world of
ovarian cysts and ovarian cancers they
actually do not do a biopsy because if
it is cancerous that procedure can then
spread the cancer he then went on to
reassure me from all my tests and all my
cat scans and his knowledge over the
years he was very very good odds
it would not be cancer that there was
only a small chance that it would be
cancer
so three weeks later I was being prepped
for surgery and I was praying and my
mind was racing please don’t let it be
cancer please don’t let it be cancer
later that same day in my hospital bed I
found out that it was cancer I was a
wreck I was inconsolable all ration went
out the window
all my determination all my intention
had not protected me from an overt from
a cancer diagnosis I was devastated both
physically and emotionally
since my diagnosis I have learned that
most people know very little about this
specific type of cancer hands in the
room please if you or someone you know
has had prostate cancer okay thank you
same for breast cancer thank you if you
or someone you know has had pancreatic
cancer and if you or someone you know
has had ovarian cancer Oh baby well my
next line is hands in the room reflect
the overall odds but actually they don’t
that was way more for pancreatic and
ovarian than the average statistics show
so as you can see ovarian cancer is one
of the less common cancers and there is
still a lot to learn about this type of
cancer they only found out a couple of
years ago that it actually starts in the
fallopian tubes and at this time there
is no screening test there is some great
research going on all over including the
stand up to cancer group just added last
year a dream team for ovarian cancer and
as I mentioned it has vague symptoms so
it often goes undiagnosed for months
it actually has very good survival rates
when it’s caught early but as you can
see it’s not usually caught early I was
fortunate I was stage 2 my doctor says
he almost never sees it I had my surgery
I did chemo and my prognosis is
excellent I was also fortunate in many
other ways I have a wonderful husband
who was at my side the entire time I
have family support I have true friends
who sat with me during chemo and then
visited me the day after chemo which for
me was the hardest day I also have great
co-workers and I had good health
insurance I mentioned my roommate
earlier Michelle who passed away from
ovarian cancer in 1990 she was
originally diagnosed with stage 1 at the
age of 28 because she was young and the
cancer was only on one ovary they
removed the cancerous ovary and they
left to help the ovary and 12 years
later it returned to stage 4 and she
passed away within the year this is the
daughter of a friend of mine it is my
sincere hope that when her generation
turns 28 there will be a change in the
world of ovarian cancer and it is my
intention to do what I can as a survivor
to help that world change
so as an ovarian cancer survivor because
there are fewer women diagnosed with it
and then because a number of the women
diagnosed with it do not survive I meet
very few other ovarian cancer survivors
if there any in the room today but break
please find me
I have met some at a support group and I
volunteered at the teal run here in
Albany and I met
women they’re wonderful women at both
places but in my go about my own world
everyday life I have met for other
ovarian cancer survivors and certainly
no one expects a cancer diagnosis and no
one deserves a cancer diagnosis but some
diagnoses are more shocking than others
and every one of these was shocking
people in the room are probably familiar
with this this is a list of things that
can increase your risk of cancer from
the American Cancer Society webpage the
four women I met had this world under
control and you’ll notice that most of
those are what I call actionable items
something you can actively do something
about this is the list of risk factors
for ovarian cancer today from several
different websites and there are a
couple of actionable items but most of
them are what I call not actionable
items all four of the women I met were
fit women under 63 non-smokers ate close
to the ground exercised regularly two
were serious runners not on prescription
meds and none had any previous cancers
these are the names of four other women
who’ve had ovarian cancer I have not met
any of these people and unfortunately
two of them have passed away including
Anna who’s pictured there she was
diagnosed with ovarian cancer at the age
of 23 my emotional side was reeling this
just can’t be coincidence there has to
be a missing piece to this puzzle so my
analytical side came back it’s alive
again
and I mold all this over for a while and
then it came to me
there must be unidentified risk factors
what if some what if the world of
fitness is actually a double-edged sword
what if the activities these people are
engaging in that lower their risk for
heart disease and dementia and stroke
what if something in that world actually
increases your risk for ovarian cancer
certainly I know I grew up with someone
who did cancer research cancer is
complicated and it has a randomness to
it but I think of the recent case of the
soccer players several young fit soccer
players were diagnosed with different
types of blood cancers people thought at
first it was kinda random then the
University of Washington coach started
gathering names she now has over 200
names on that list and over half the
players were goalies so now that data
has been collected and they’re making
connections and they’re starting to do
research what if the same is true for
the world of ovarian cancer what if the
data is out there waiting to be
collected waiting to be analyzed and
what if that analysis can lead to risk
factors that are actionable what
activities might compromise the
fallopian tubes
maybe tampon usage maybe tampons are a
risk factor and maybe active women wear
more tampons or Fitness clothes which
are made out of synthetic fibers and
worn tight-fitting or maybe yeast
infections are a factor and maybe
athletic women get more yeast infections
who knows but finding and identifying an
actionable item that can
power a woman to decrease her risk for
ovarian cancer prevention is the Holy
Grail so how to take my idea based on
anecdotal observations of for to the
next level how to gather more data and
at first I was stumped and then the
September 29th edition of the NPR TED
radio hour was on citizen science
citizen science is a broad term that
encompasses many things but it involves
a person who is it involves citizens
helping science move forward in a number
of different ways – from the
conservation world that you might have
heard of ri naturalist and eBird so with
that I was inspired to bring my idea to
you my idea is to do an online survey to
move from four to three thousand analyze
that data share the results and
hopefully inspire some Cancer
Foundation’s some scientific researchers
to do a full-blown study who knows what
they might find science is amazing so as
I mentioned goal is three thousand women
three hundred ovarian cancer survivors
90-day window share results in time for
world okay but world ovarian cancer Day
on May 8th so each of you is a data
point
and the goal is to use connections and
spread and get more data points reach
out to active women you know runners
rock climbers swimmers dancers anyone
you know who’s in any kind of active
world so I am extremely honored to be
here today to talk on this TEDx stage
today also marks the first step in me
honoring the promise to myself that I
would use my cancer experience and the
fact that I have survived that
experience to make a difference in the
world of ovarian cancer so I have a call
to action for everyone in the room
women complete the survey men recruit
one woman to complete the survey
everyone talk with six women and
encourage them to complete the survey
spread the word share the hashtag share
the URL for the website like the
Facebook page if everyone in this room
actually does that will reach a quarter
of the goal of the survey so I thank you
in advance for your help
with this extremely deadly cancer
[Applause]
you
this represents my emotional side and my
analytical side most of my life these
have been in good balance but this was
my yin-yang symbol on November 3rd 2014
when I learned I had ovarian cancer my
emotional side took over completely it
was about a year before I could even
talk about my cancer diagnosis without
bursting into tears but gradually my
analytical side returned and when it did
I started making observations these
observations have led to an idea and it
is this idea that I bring to you today
the idea is not based on statistical
statistically significant data it is the
first part of the scientific process it
is based on observations it is an idea I
am extremely passionate about and I
believe it is an idea of worth spreading
a little about what makes me tick my mom
was a woman ahead of her time she still
is a woman ahead of her time she
graduated from Florida State University
in the 40s when most women did not go to
college there was no football team it
was an all woman’s college at the time
my dad’s career was in the field of
radiological physics he did cancer
research for radiation oncology he
worked at Johns Hopkins
Columbia University and Albert Einstein
Medical College our dog got cancer
breast cancer in the 70s and benefited
from this connection and was able to
participate in one of the experimental
treatments
I liked observation and observing things
and detective work from a young age I
can still hear my mother’s voice reading
Sherlock Holmes stories out loud in the
car on long car rides and in high school
I belonged to a treasure hunt club my
professional background is in GIS
geographic information systems spatial
analysis database code program debugging
software its own form of detective work
between the ages of 15 and 33 for people
very close to me passed away from cancer
my Uncle Eddie died of lung cancer
my cousin cookie passed away from breast
cancer
my cousin Liz passed away from
pancreatic cancer and in 1990 24 years
before my diagnosis my roommate in
Boston passed away from ovarian cancer
all of these deaths had a huge impact on
me and I was determined to do what I
could to prevent my self from having to
experience the ravages of a cancer
diagnosis so my analytical side stepped
back made some observations I saw some
risk factors so I made conscious
lifestyle decisions I ate well ate close
to the ground I exercise regularly I
never smoked and I’ve been doing yoga
and Tai Chi way before they were
featured in commercials
[Music]
teal teal is the color for ovarian
cancer my story of my diagnosis begins
in the spring of 2014 I experienced
three vague symptoms I had a bizarre
abdominal distension every evening that
was gone
every morning I had a persistent pain a
dull consistent persistent pain in my
right side in my lower back wouldn’t go
away physical therapy stretching you
name it ice heat nothing and then once
or twice a week I was nauseous after I
ate something for no particular reason I
went to the doctor and nothing was
identified about three months later I
was at my annual GYN checkup and my
gynecologist felt something suspicious
she ordered an ultrasound and it showed
there was a growth on my right ovary she
explained that you know there were
really good odds it was a benign ovarian
cyst but there was a chance it was an
ovarian cancer so cat-scan blood work
and an appointment about three weeks
later my husband and I are sitting in
the doctor’s office in the little room
at the oncologist office and my doctor
was explaining that in the world of
ovarian cysts and ovarian cancers they
actually do not do a biopsy because if
it is cancerous that procedure can then
spread the cancer he then went on to
reassure me from all my tests and all my
cat scans and his knowledge over the
years he was very very good odds
it would not be cancer that there was
only a small chance that it would be
cancer
so three weeks later I was being prepped
for surgery and I was praying and my
mind was racing please don’t let it be
cancer please don’t let it be cancer
later that same day in my hospital bed I
found out that it was cancer I was a
wreck I was inconsolable all ration went
out the window
all my determination all my intention
had not protected me from an overt from
a cancer diagnosis I was devastated both
physically and emotionally
since my diagnosis I have learned that
most people know very little about this
specific type of cancer hands in the
room please if you or someone you know
has had prostate cancer okay thank you
same for breast cancer thank you if you
or someone you know has had pancreatic
cancer and if you or someone you know
has had ovarian cancer Oh baby well my
next line is hands in the room reflect
the overall odds but actually they don’t
that was way more for pancreatic and
ovarian than the average statistics show
so as you can see ovarian cancer is one
of the less common cancers and there is
still a lot to learn about this type of
cancer they only found out a couple of
years ago that it actually starts in the
fallopian tubes and at this time there
is no screening test there is some great
research going on all over including the
stand up to cancer group just added last
year a dream team for ovarian cancer and
as I mentioned it has vague symptoms so
it often goes undiagnosed for months
it actually has very good survival rates
when it’s caught early but as you can
see it’s not usually caught early I was
fortunate I was stage 2 my doctor says
he almost never sees it I had my surgery
I did chemo and my prognosis is
excellent I was also fortunate in many
other ways I have a wonderful husband
who was at my side the entire time I
have family support I have true friends
who sat with me during chemo and then
visited me the day after chemo which for
me was the hardest day I also have great
co-workers and I had good health
insurance I mentioned my roommate
earlier Michelle who passed away from
ovarian cancer in 1990 she was
originally diagnosed with stage 1 at the
age of 28 because she was young and the
cancer was only on one ovary they
removed the cancerous ovary and they
left to help the ovary and 12 years
later it returned to stage 4 and she
passed away within the year this is the
daughter of a friend of mine it is my
sincere hope that when her generation
turns 28 there will be a change in the
world of ovarian cancer and it is my
intention to do what I can as a survivor
to help that world change
so as an ovarian cancer survivor because
there are fewer women diagnosed with it
and then because a number of the women
diagnosed with it do not survive I meet
very few other ovarian cancer survivors
if there any in the room today but break
please find me
I have met some at a support group and I
volunteered at the teal run here in
Albany and I met
women they’re wonderful women at both
places but in my go about my own world
everyday life I have met for other
ovarian cancer survivors and certainly
no one expects a cancer diagnosis and no
one deserves a cancer diagnosis but some
diagnoses are more shocking than others
and every one of these was shocking
people in the room are probably familiar
with this this is a list of things that
can increase your risk of cancer from
the American Cancer Society webpage the
four women I met had this world under
control and you’ll notice that most of
those are what I call actionable items
something you can actively do something
about this is the list of risk factors
for ovarian cancer today from several
different websites and there are a
couple of actionable items but most of
them are what I call not actionable
items all four of the women I met were
fit women under 63 non-smokers ate close
to the ground exercised regularly two
were serious runners not on prescription
meds and none had any previous cancers
these are the names of four other women
who’ve had ovarian cancer I have not met
any of these people and unfortunately
two of them have passed away including
Anna who’s pictured there she was
diagnosed with ovarian cancer at the age
of 23 my emotional side was reeling this
just can’t be coincidence there has to
be a missing piece to this puzzle so my
analytical side came back it’s alive
again
and I mold all this over for a while and
then it came to me
there must be unidentified risk factors
what if some what if the world of
fitness is actually a double-edged sword
what if the activities these people are
engaging in that lower their risk for
heart disease and dementia and stroke
what if something in that world actually
increases your risk for ovarian cancer
certainly I know I grew up with someone
who did cancer research cancer is
complicated and it has a randomness to
it but I think of the recent case of the
soccer players several young fit soccer
players were diagnosed with different
types of blood cancers people thought at
first it was kinda random then the
University of Washington coach started
gathering names she now has over 200
names on that list and over half the
players were goalies so now that data
has been collected and they’re making
connections and they’re starting to do
research what if the same is true for
the world of ovarian cancer what if the
data is out there waiting to be
collected waiting to be analyzed and
what if that analysis can lead to risk
factors that are actionable what
activities might compromise the
fallopian tubes
maybe tampon usage maybe tampons are a
risk factor and maybe active women wear
more tampons or Fitness clothes which
are made out of synthetic fibers and
worn tight-fitting or maybe yeast
infections are a factor and maybe
athletic women get more yeast infections
who knows but finding and identifying an
actionable item that can
power a woman to decrease her risk for
ovarian cancer prevention is the Holy
Grail so how to take my idea based on
anecdotal observations of for to the
next level how to gather more data and
at first I was stumped and then the
September 29th edition of the NPR TED
radio hour was on citizen science
citizen science is a broad term that
encompasses many things but it involves
a person who is it involves citizens
helping science move forward in a number
of different ways – from the
conservation world that you might have
heard of ri naturalist and eBird so with
that I was inspired to bring my idea to
you my idea is to do an online survey to
move from four to three thousand analyze
that data share the results and
hopefully inspire some Cancer
Foundation’s some scientific researchers
to do a full-blown study who knows what
they might find science is amazing so as
I mentioned goal is three thousand women
three hundred ovarian cancer survivors
90-day window share results in time for
world okay but world ovarian cancer Day
on May 8th so each of you is a data
point
and the goal is to use connections and
spread and get more data points reach
out to active women you know runners
rock climbers swimmers dancers anyone
you know who’s in any kind of active
world so I am extremely honored to be
here today to talk on this TEDx stage
today also marks the first step in me
honoring the promise to myself that I
would use my cancer experience and the
fact that I have survived that
experience to make a difference in the
world of ovarian cancer so I have a call
to action for everyone in the room
women complete the survey men recruit
one woman to complete the survey
everyone talk with six women and
encourage them to complete the survey
spread the word share the hashtag share
the URL for the website like the
Facebook page if everyone in this room
actually does that will reach a quarter
of the goal of the survey so I thank you
in advance for your help
with this extremely deadly cancer
[Applause]
you
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