A podcast for care partners, cancer patients, and anybody who knows or loves somebody with cancer, particularly colorectal cancer (CRC). Care Partners Compass is told through the lens of a Stage 4 CRC care partner with occasional guests.
Season 1 will be primarily from my personal experience as a stage 4 CRC care partner. Topics will include diagnosis, biomarkers, clinical trials, second opinions, finding hope and joy, and more.
The podcast trailer is out now. Please listen and share widely.
Logo design: Kristine Dunkerton
Episodes will be dropping in March 2024 - Colorectal Cancer Awareness Month.
If you are 45 and older, or are any age and are experiencing anemia, unexplained weight loss, or other symptoms, please schedule your colonoscopy.
Disclaimer:
This podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions.
Reference to any specific product or entity does not constitute an endorsement or recommendation.
This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.
Elsa: Welcome to Care Partners
Compass Navigating CRC. My name
is Elsa Lankford. I am the care
partner to my incredible wife,
Kristine, who has stage four
colorectal cancer.
This episode is going to be
about chemo from a Stage four
Care Partners perspective. I
might end up doing more than one
episode about chemo because what
I'm concentrating in this
episode is about the first chemo
line that Kristine was on. I
recorded this episode already
for an hour in bits and pieces.
I had Kristine listen to it
because she has final editing
rights and she said that I was
being very informational but
slow and boring, and that it
wasn't, from my perspective.
that's humbling.
So I'm doing it again
I think each each person is
different and they're going to
handle the chemo part of the
cancer journey differently.
Elsa: This is what a typical
chemo infusion day would look
like. We would wake up early
because bloodwork would start at
about seven, 730. I would make
breakfast or help with breakfast.
If she wanted to cook, I would
get the cold bags ready with all
the icing supplies, when When
she was on the triplet chemo,
which is for FOLFOXIRI, She
needed to have icing supplies
that made it less likely for her
to be sensitive to the cold. And
also they found out through
studies that there's a chance
that it lessens the possibility
of getting neuropathy. So she
would have these icy gloves and
icy slippers and multiple pairs
of them. We'd get the supplies
packed up, get some some snacks
and then in the car we'd always
listen to a very silly podcast.
This was a way to kind of
keep of humor while, you know,
undergoing something that nobody
wants to do. Part of the day of
the chemo infusion would be
focusing on the routine because
that routine made things, I
think, a little less scary. She
would get her bloodwork done and
then we'd have 3 hours to walk
around That was part of the
chemo experience, was to eat
breakfast at home and then walk
around and get a second
breakfast. Some people fast for
chemo, and Kristine did the
exact opposite. Part of it was
really helpful because she
needed to gain weight she needed
additional calories and and
protein. And that worked for her.
we'd walk all around, do some
sightseeing, some shopping,
Elsa: While we were out, the
oncology nurse would call.
There's two things that need to
happen for the chemo infusion to
be a go, and that is that the
blood work numbers are okay and
the oncology nurse has basically
a checklist to make sure both
about what side effects the
patient is experiencing and also
that that there's not a safety
risk in giving the chemo. And
that information gets passed on
to the oncologist.
The day then would be bloodwork,
three hour gap infusion for five
6 hours.
Elsa: During chemo, she would
make sure that we did some
dancing. again, this is not
something that you're going to
hear from most people during
their chemo experience. But that
was really important to her. So
the reason for the dancing was
was kind of twofold. On was that
she wanted to make sure that
even on the infusion days, she
was getting her 15,000 steps. So
our walk in the morning would
usually be about 10,000 steps.
And then there'd be usually, you
know, 5000 dancing steps.
Elsa: Because the dancing
happened after the Oxaliplatin
infusion, where she had the
icing supplies on, it would let
her warm up. I needed to make
sure that during the Oxaliplatin
infusion that she had her icing
supplies going. as a care
partner, that made me feel like
I was doing something. And that
was, I think, really helpful.
And it also made the time go in
the infusion chair a lot quicker
because Oxaliplatin was a two
hour infusion and I would need
to just make sure that
everything was still cold,
switch them out when needed. The
very first time that Kristine
iced for Oxaliplatin, she was
too regimented in her approach
and ended up getting a little
bit of frostbite. So a hot tip,
a cold tip is to make sure that
your loved ones take their hands
out of the icing supplies, you
know, every 15 minutes or so to
make sure that that doesn't
happen. I was privileged enough
to be able to have enough sick
time to take off. Her infusion
days were Thursdays, so I would
take off work Thursdays and
Fridays. And that way I could be
there during her chemo infusion
and I could be there while she
still had her 5FU pack on if
you're new to CRC then 5FU is
one of the chemo drugs you
basically have to wear it for 46
hours. it doesn't get infused so
much during the infusion, but
your loved one will have it in
like a fanny pack for 46 hours
after the infusion. So that
means that they come home with
the 5FU. Some people with cancer
may not want their care partner
to go with them to chemo or they
may not want them to stay home
with them the next day. That was
something that worked for us. So
everything that I did as a care
partner was, you know, checking
with Kristine first and making
sure that that was what she
wanted.
Kristine would have her 5FU pack
and I would drive home. The
irinotecan which was the last
chemo drug to be infused, would
make her eyes really sensitive
to light.So she would put on
her sunglasses. I would drive
home For probably about a year.
Our friend Jill would come over
every other Thursday. every
chemo day, she would either pick
up dinner, make dinner, and we'd
eat together. And then after
dinner Kristine would always
have just a little bit of ice
cream. That was for a couple of
reasons. One, because she
deserved it and another because
it was a way to make sure that
she didn't have cold sensitivity.
Cancer has a way of making you
feel very isolated. And
especially when you couple that
with COVID. It felt like we had
an extra layer of support, which
was such a nice feeling.
Elsa: The 5FU would run for 46
hours two after the 5FU was done
the first couple of times a home
nurse would come and remove the
needle from Kristine's port.
Take the the empty chemo pack
basically off. After those first
few times I had to do that. the
end to the chemo infusion was d
accessing her port removing the
needle from her port and, you
know, properly disposing of
everything
just like there was a routine
about everything else. About
chemo. There was a routine about
stopping chemo. We would watch
the video about how to de-access
the port. I would lay everything
out on the table. And there was
a set of steps that would happen
to make it end. As a care
partner.
That part was, you know, always
stressful. The first time I had
to do that on my own.I was
really scared. I was scared that
I was going to hurt her as
scared I was going to mess up.
But it was fine. The second time
I got, I think, a little too
confident
and I ended up hurting her,
taking the the needle out when
we went to her next infusion,I
asked if I could practice. I
remember they gave me a glovebox
and a needle and I was able to
to practice taking it out
multiple times. So that way it
made me feel like I could do
better because I hated that, you
know, I was trying to help. And
then I hurt her. I had a little
mantra about how to remove the
needle, which now I can't even
remember. it was something that
we would say together, and it
made the process. less stressful,
both of us were so happy when
that needle was out.
Elsa: So with chemo, there is
what's called neoadjuvant chemo.
neoadjuvant means that you get
chemo before the surgery, and
adjuvant means that you get
chemo after the surgery. So in
Kristine's case, when we first
talked with the oncologist, you
know, the hope was that the
chemo would be effective and
that she could get to surgery.
She would then also need chemo
after surgery and would probably
need two surgeries, one for her
liver and lymph and another for
her colon and lymph. that was so
that was the initial plan.
Typically with the first line
chemo's and depending on the
person, the first line could be
FOLFOX. It could be FOLFIRI, it
could be FOLFOXIRI. There might
be other things added on like
Avastin or Vectibix.
So in her case, it was FOLFOXIRI,
which is 5FU. Plus Oxaliplatin
plus Irinotecan plus Avastin. So
it was kind of almost everything
all put together a very
aggressive chemo regimen.
Elsa: the initial thought was 12
rounds of FOLFOXIRI checking,
know, somewhere in between to
see how things were doing,
because that's the thing with
cancer you will never know
enough about what is happening
with the cancer So there's CEA,
which is a tumor marker. There
is, circulating tumor DNA
testing that ctdna that looks
for tumor cells that are in the
blood. And they base that on an
initial tumor sample and then
there are scans. scans are
typically every 2 to 3 months.
CEA is typically, you know,
might be every two weeks, it
might be every four weeks.
circulating tumor DNA. ctDNA can
be, you know, anywhere from
every four weeks to every three
months. As Kristine was doing
chemo, we had very little idea
of what was happening. the ways
that we knew that something was
working was that after she
started chemo, she couldn't feel
that bump on her stomach anymore.
S became more hungry. And the
oncologist thought that because
her liver tumor was so big, it
was probably squishing her
stomach and made her stomach
smaller. So as the liver tumor
was shrinking because of the
chemo, it allowed her stomach to
be able to expand. We were
getting CEA numbers, which
started off really high, 5500,
and that, you know, went down So
CEA should be three or less.
the CTDNA she had that started
before chemo and that started at
like over 10,000, which should
be zero. So these numbers are
going down. She can no longer
feel the tumor through her skin
The scan is really the best way
to know what's happening. And
that's what she needed for the
surgeons to decide to take her
case So she had been diagnosed
in July. She started chemo in
August, November. Her was when
she had, I believe, her first
scan and that it was good. They
were definitely seeing that
everything was getting smaller,
which was excellent. That is
when we started to talk to the
surgeons.
Elsa: So we were incredibly
fortunate to be at a cancer
center where surgeons were
involved from the get go. They
were part of the team. We didn't
talk to them before that, but
her oncologist was. So I'm just
going to say here and I say this
a lot throughout this podcast.
It It was only when I started to
get involved with online CRC
communities that I started to
realize how fortunate we were
that surgeons were interested in
her case, even though it was
super complicated. getting
second opinions and third
opinions and fourth opinions is
so important. Getting to talk to
a surgeon, not just an
oncologist, but a surgeon is
crucial, particularly if your
loved one has liver mets or
peritoneal mets, to be able to
talk to a surgeon can really
make the difference.
So I'm trying to remember back
to the first day of chemo I'll
keep it short because my memory
is really bad. I knew so little
about physically,where we were
going, what the experience was
going to be like and started off
scared, really scared for her
feeling really helpless.
Elsa: Kristine was very lucky
because even though she had all
these chemos put together, she
had very few side effects. The
main side effect while she was
getting the chemo was fatigue.
And then a longer term side
effect was like a chemo brain
fog. Some people have a lot more
side effects. They have GI
issues, they have nausea,
diarrhea. Hair loss. There can
be really a lot of different
side effects. you know, the
thing of being a care partner is
you can try to provide, you know,
everything. But I have found
that doesn't mean that you don't
feel helpless. you can do is
support your loved one in every
way that you can. And when
you're going into something
completely unknown, like chemo
for the first time, because I
hadn't gotten into any online
communities early. And I think
in one way that was better
because I didn't have any
expectations. I was just there
to make sure that whatever I
could provide for Kristine, that
I would. really all about just
doing anything that you can to
make them feel comfortable, to
make sure that they know that
you're there for them. That's
what being a care partner is
about.
Track 2: Thank you for joining
me for this episode of Care
Partners Compass: Navigating CRC.
Please listen up for the next
episode, which will come out
next week. If you subscribe to
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transcript of Care Partners
Compass: Navigating CRC and
additional links can be found on
our website
Carepartnerscompass.
transistor.