[Applause]
fifteen months and four days ago I was
in a hospital I had just given birth to
a seven pound five ounce baby boy and I
was living in that newborn baby bliss in
Hays I was thrilled to not be pregnant
anymore as I had had a terrible
pregnancy but now my son was here he was
healthy and I was living in all the
excitement of what was to come
including him meeting his big sister and
our family moving here to Evansville
three weeks later fifteen days after my
son was born I once again found myself
in a hospital I had gone to the ER at
6:00 in the morning with severe
abdominal pain a CT scan followed by a
colonoscopy later a tumor was discovered
in my ascending colon two days after
that I had surgery to remove it seven
days after that I was finally released
from the hospital a day after that we
moved here to Evansville in two weeks
after that I started chemotherapy in
April of this year six months after
starting chemo I started feeling really
sick and we found out that the chemo
didn’t work and I had metastases to my
liver and small bowel a week after that
I started a new treatment immunotherapy
two weeks after that I was hospitalized
you do incredible malnutrition a day
after that I was put on TPN which is a
nutrition that can’t go straight through
your blood through an IV line and to
avoid eating if your digestive system
doesn’t work and five days after that I
got really hungry so I went ahead and
tried to eat and I kept eating I didn’t
feel nauseous anymore as I had the
previous two months and I started to
feel like my normal self and then in
July and again last month in September I
had scans that prove the immunotherapy
is working and things are drastically
improving now I still have a long road
ahead and two scans haven’t shown
complete remission but I am experiencing
a good enough stretch of Health that
some friends convinced me to give this
so what I really want to share today is
my perspective on cancer care and you
hear this word a lot as a patient care
now my idea of cancer treatment prior to
being diagnosed was that there was this
like wall of meds in the back of
oncologist office where doctors could
cherry pick to try to create like a
magic potion combination to cure that
person’s cancer what actually happens
for the most part is a standard of care
so specific treatments go through
rigorous trials to get FDA approval and
the result is a more formulaic treatment
plan you have states that colon cancer
you start with this chemotherapy regimen
as I did now this actually came to be
quite comforting to me you know the
treatment I was getting had been proven
to work best for my disease and so I
thought I was getting the best chance at
a cure what I also found however was
that the non-medical treatment so the
emotional supports people provide seem
to also follow a standard of care folks
had heard of the tried-and-true
support Megan mechanisms to offer
someone going through cancer and they
really employed them readily and this
did not end up providing me with the
same amount of comfort so I want to
address three specific groups now and
I’ll announce them like at the top of
each to make it easy for you to come in
and out of paying attention if you’d
like the first group I want to talk to
our family and friends of someone with
cancer and this might include a lot of
you in this room actually I was and
continue to be showered with cards texts
prayers gift cards books on cancer
casseroles from really supportive family
and friends now I will never complain
about this it has been humbling and
beautiful and just really lovely to
realize how well I’m loved but often
this Wellspring a support somehow left
me feeling more uncomfortable than
comforted well I was overcome with love
and appreciation for my people sometimes
it’s simultaneously made me squirm it’s
not that I didn’t need some of this help
I did I couldn’t lift my daughter for
weeks and carrying my newborn son up and
down the stairs is really challenging
forget trying to cook for myself or do
my own laundry it’s just it’s just
that’s the favorite kind of help for me
in the world it’s like exactly and
specifically that which I
for nothing more or less you simply must
know your audience when you’re trying to
help and I think some of my family and
friends may have forgotten like what a
control freak I am and that immediate
and visceral reaction to lend a helping
hand here’s what else I found about this
care it was so out of the ordinary had
made my whole situation feel so abnormal
and one thing I actually found so
interesting was how normal cancer felt
so quickly the day you get diagnosed in
perhaps a few weeks after is like a bomb
going off it’s an explosion but then the
dust kind of starts to settle and you
look around and everything’s really
damaged but you can kind of see through
it and figure yourself out and that’s
why I a day after getting released from
my initial hospital stay
my biggest annoyance was that my
underwear drawer had somehow gotten lost
in our move and was now in a storage
facility piled under like our kitchen
table and Christmas tree and it’s why
when I watch this talk back my first
judgment isn’t going to be about the
merits of my message or how I feel it’s
contributing to conversations about
healthcare or even how I feel you’re
receiving it it’s going to be about what
I as a woman have been taught to judge
first all my life and that’s whether I
look thin enough and this outfit yeah
funny but not funny
see I felt like there was constantly
this perception projected on me even
from family and friends that once you
get the diagnosis you seize the day and
you don’t sweat the small stuff and you
only think deep thoughts and there’s all
these big moments and you live like
you’re dying and for me that really
wasn’t true you know life went on so
normally most of the time with most of
my day filled with changing diapers
getting a little toddler girl into her
shoes and like pretending to play school
while scrolling through Instagram and
then there were just these little
interruptions for cancer stuff so oh I’m
gonna give you some advice on talking to
someone going through cancer maybe just
a little limit the long meaningful looks
all the things that scream oh shit it
instead try asking how they’re doing in
the humdrum way you might ask about the
job or a house project they’re working
on or what their plans are for the
weekend because in that moment their
mind may be on something else entirely
and while cancer is an obvious and
immovable part of their life that they
don’t mind and nology your stairs may
make them feel the need to feign emotion
and in time when they’re actually
feeling pretty steady and then they may
end up comforting you and for God’s sake
like we’re in target you know like and
I’m alone no kids are with me so don’t
okay great number two did you remember
we were doing groups next is medical
professionals so doctors nurses billing
specialist procedure schedulers of
Evansville it’s really nice to see you
again really made my way around your
facilities the past couple months um I
really want to thank you I you’re in a
tough and stressful job and I have
received it’s just such excellent and
compassionate care here but the grass
Loudmouth patients please don’t lead
with a line that goes something like
this
first off I’m just so sorry about what
you’re going through this makes me feel
like my disease is the worst in the
world and I’m going to die imminently
there is nowhere I need to feel less
special than in your hospital room the
most comforting thing in the world for
me right now would be for you to pretend
that I’m 131 year old patient with stage
4 colon cancer that you’ve cured this
year also when I ask a question and I’ll
I can tell when your eyes start to
narrow and your brow starts to furrow
your head starts to tilt but you take
great care to keep your mouth like
really neutral there are a few places
more vulnerable than supine in a
hospital bed not much makes me feel less
powerful than being in bed usually one
of the most private and intimate spaces
you can be in a gown with no snaps just
like open in the back and those like big
goofy gripper hospital socks hooked me a
needle from your body to an IV pump so
when I’m asking questions of which some
will be intelligent and insightful and
relevant and some will be stupid and
ridiculous please just humor my efforts
to create an equal power structure also
included in this group are policy makers
drug manufacturers insurance executives
before we all start to squirm I’ll
simply say this know that the patient’s
you are serving are not just patients so
please don’t think of them as such facts
of most of us would identify as patients
pretty far down the list behind our
identities as friends spouses siblings
professionals citizens so when you make
a commercial that shows a woman going
through chemotherapy being read to by
her male partner and then make a
parallel commercial where a man going
through chemotherapy can still evidently
complete a crossword puzzle on his own
know that there’s a patient using your
drug who identifies as a feminist as
well and is currently making a mental
note to ask her doctor if there’s an
alternative to your product know that we
read our explanations of benefits and
see that the drug we love so much that
it’s currently saving our life is billed
for our insurance every four weeks at a
rate of twenty two thousand nine hundred
and twenty dollars so we could obviously
never afford this if our situation
changed and there weren’t protections
for pre-existing conditions know that I
know I’m part of one of the most
privileged groups when it comes to
health care access and know that it kept
me up at night thinking about others
going through the same thing without
adequate insurance
access to FMLA with hourly jobs I could
keep them from appointments and without
trusted friends and family members to
watch their kids when they go no your
life can literally mean life or death
okay so the final group I want to talk
to you are my fellow patients and any
one of you who might find yourself in
that position in the future here I want
to apologize if nothing I’m saying right
now resonates with you all of my tension
with care as it’s currently provided may
be mine and mine alone I went to therapy
exactly one time in the past 15 months
though a lot of you might think a return
trip is a pretty good idea for me you’re
not wrong but the therapist I saw said
something really valuable and I’ve
thought about it a lot as I process all
this she said that what she sounded her
practice is that people handle crisis
situations fundamentally the same way
they handle everything else in their
life so if you find yourself feeling
more uncomfortable with your care than
comforted don’t be afraid to question
thank you [Applause]
fifteen months and four days ago I was
in a hospital I had just given birth to
a seven pound five ounce baby boy and I
was living in that newborn baby bliss in
Hays I was thrilled to not be pregnant
anymore as I had had a terrible
pregnancy but now my son was here he was
healthy and I was living in all the
excitement of what was to come
including him meeting his big sister and
our family moving here to Evansville
three weeks later fifteen days after my
son was born I once again found myself
in a hospital I had gone to the ER at
6:00 in the morning with severe
abdominal pain a CT scan followed by a
colonoscopy later a tumor was discovered
in my ascending colon two days after
that I had surgery to remove it seven
days after that I was finally released
from the hospital a day after that we
moved here to Evansville in two weeks
after that I started chemotherapy in
April of this year six months after
starting chemo I started feeling really
sick and we found out that the chemo
didn’t work and I had metastases to my
liver and small bowel a week after that
I started a new treatment immunotherapy
two weeks after that I was hospitalized
you do incredible malnutrition a day
after that I was put on TPN which is a
nutrition that can’t go straight through
your blood through an IV line and to
avoid eating if your digestive system
doesn’t work and five days after that I
got really hungry so I went ahead and
tried to eat and I kept eating I didn’t
feel nauseous anymore as I had the
previous two months and I started to
feel like my normal self and then in
July and again last month in September I
had scans that prove the immunotherapy
is working and things are drastically
improving now I still have a long road
ahead and two scans haven’t shown
complete remission but I am experiencing
a good enough stretch of Health that
some friends convinced me to give this
so what I really want to share today is
my perspective on cancer care and you
hear this word a lot as a patient care
now my idea of cancer treatment prior to
being diagnosed was that there was this
like wall of meds in the back of
oncologist office where doctors could
cherry pick to try to create like a
magic potion combination to cure that
person’s cancer what actually happens
for the most part is a standard of care
so specific treatments go through
rigorous trials to get FDA approval and
the result is a more formulaic treatment
plan you have states that colon cancer
you start with this chemotherapy regimen
as I did now this actually came to be
quite comforting to me you know the
treatment I was getting had been proven
to work best for my disease and so I
thought I was getting the best chance at
a cure what I also found however was
that the non-medical treatment so the
emotional supports people provide seem
to also follow a standard of care folks
had heard of the tried-and-true
support Megan mechanisms to offer
someone going through cancer and they
really employed them readily and this
did not end up providing me with the
same amount of comfort so I want to
address three specific groups now and
I’ll announce them like at the top of
each to make it easy for you to come in
and out of paying attention if you’d
like the first group I want to talk to
our family and friends of someone with
cancer and this might include a lot of
you in this room actually I was and
continue to be showered with cards texts
prayers gift cards books on cancer
casseroles from really supportive family
and friends now I will never complain
about this it has been humbling and
beautiful and just really lovely to
realize how well I’m loved but often
this Wellspring a support somehow left
me feeling more uncomfortable than
comforted well I was overcome with love
and appreciation for my people sometimes
it’s simultaneously made me squirm it’s
not that I didn’t need some of this help
I did I couldn’t lift my daughter for
weeks and carrying my newborn son up and
down the stairs is really challenging
forget trying to cook for myself or do
my own laundry it’s just it’s just
that’s the favorite kind of help for me
in the world it’s like exactly and
specifically that which I
for nothing more or less you simply must
know your audience when you’re trying to
help and I think some of my family and
friends may have forgotten like what a
control freak I am and that immediate
and visceral reaction to lend a helping
hand here’s what else I found about this
care it was so out of the ordinary had
made my whole situation feel so abnormal
and one thing I actually found so
interesting was how normal cancer felt
so quickly the day you get diagnosed in
perhaps a few weeks after is like a bomb
going off it’s an explosion but then the
dust kind of starts to settle and you
look around and everything’s really
damaged but you can kind of see through
it and figure yourself out and that’s
why I a day after getting released from
my initial hospital stay
my biggest annoyance was that my
underwear drawer had somehow gotten lost
in our move and was now in a storage
facility piled under like our kitchen
table and Christmas tree and it’s why
when I watch this talk back my first
judgment isn’t going to be about the
merits of my message or how I feel it’s
contributing to conversations about
healthcare or even how I feel you’re
receiving it it’s going to be about what
I as a woman have been taught to judge
first all my life and that’s whether I
look thin enough and this outfit yeah
funny but not funny
see I felt like there was constantly
this perception projected on me even
from family and friends that once you
get the diagnosis you seize the day and
you don’t sweat the small stuff and you
only think deep thoughts and there’s all
these big moments and you live like
you’re dying and for me that really
wasn’t true you know life went on so
normally most of the time with most of
my day filled with changing diapers
getting a little toddler girl into her
shoes and like pretending to play school
while scrolling through Instagram and
then there were just these little
interruptions for cancer stuff so oh I’m
gonna give you some advice on talking to
someone going through cancer maybe just
a little limit the long meaningful looks
all the things that scream oh shit it
instead try asking how they’re doing in
the humdrum way you might ask about the
job or a house project they’re working
on or what their plans are for the
weekend because in that moment their
mind may be on something else entirely
and while cancer is an obvious and
immovable part of their life that they
don’t mind and nology your stairs may
make them feel the need to feign emotion
and in time when they’re actually
feeling pretty steady and then they may
end up comforting you and for God’s sake
like we’re in target you know like and
I’m alone no kids are with me so don’t
okay great number two did you remember
we were doing groups next is medical
professionals so doctors nurses billing
specialist procedure schedulers of
Evansville it’s really nice to see you
again really made my way around your
facilities the past couple months um I
really want to thank you I you’re in a
tough and stressful job and I have
received it’s just such excellent and
compassionate care here but the grass
Loudmouth patients please don’t lead
with a line that goes something like
this
first off I’m just so sorry about what
you’re going through this makes me feel
like my disease is the worst in the
world and I’m going to die imminently
there is nowhere I need to feel less
special than in your hospital room the
most comforting thing in the world for
me right now would be for you to pretend
that I’m 131 year old patient with stage
4 colon cancer that you’ve cured this
year also when I ask a question and I’ll
I can tell when your eyes start to
narrow and your brow starts to furrow
your head starts to tilt but you take
great care to keep your mouth like
really neutral there are a few places
more vulnerable than supine in a
hospital bed not much makes me feel less
powerful than being in bed usually one
of the most private and intimate spaces
you can be in a gown with no snaps just
like open in the back and those like big
goofy gripper hospital socks hooked me a
needle from your body to an IV pump so
when I’m asking questions of which some
will be intelligent and insightful and
relevant and some will be stupid and
ridiculous please just humor my efforts
to create an equal power structure also
included in this group are policy makers
drug manufacturers insurance executives
before we all start to squirm I’ll
simply say this know that the patient’s
you are serving are not just patients so
please don’t think of them as such facts
of most of us would identify as patients
pretty far down the list behind our
identities as friends spouses siblings
professionals citizens so when you make
a commercial that shows a woman going
through chemotherapy being read to by
her male partner and then make a
parallel commercial where a man going
through chemotherapy can still evidently
complete a crossword puzzle on his own
know that there’s a patient using your
drug who identifies as a feminist as
well and is currently making a mental
note to ask her doctor if there’s an
alternative to your product know that we
read our explanations of benefits and
see that the drug we love so much that
it’s currently saving our life is billed
for our insurance every four weeks at a
rate of twenty two thousand nine hundred
and twenty dollars so we could obviously
never afford this if our situation
changed and there weren’t protections
for pre-existing conditions know that I
know I’m part of one of the most
privileged groups when it comes to
health care access and know that it kept
me up at night thinking about others
going through the same thing without
adequate insurance
access to FMLA with hourly jobs I could
keep them from appointments and without
trusted friends and family members to
watch their kids when they go no your
life can literally mean life or death
okay so the final group I want to talk
to you are my fellow patients and any
one of you who might find yourself in
that position in the future here I want
to apologize if nothing I’m saying right
now resonates with you all of my tension
with care as it’s currently provided may
be mine and mine alone I went to therapy
exactly one time in the past 15 months
though a lot of you might think a return
trip is a pretty good idea for me you’re
not wrong but the therapist I saw said
something really valuable and I’ve
thought about it a lot as I process all
this she said that what she sounded her
practice is that people handle crisis
situations fundamentally the same way
they handle everything else in their
life so if you find yourself feeling
more uncomfortable with your care than
comforted don’t be afraid to question
thank you [Applause]
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