Care Partners Compass: Navigating CRC

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

the podcast on your favorite
podcast app, you will know

exactly when the next episode
comes out. I hope that you'll

share the podcast with your
friends and family. The

transcript of Care Partners
Compass: Navigating CRC and

additional links can be found on
our website

Carepartnerscompass.

transistor.