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
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