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Elsa: Welcome to Care Partners
Compass Navigating CRC. My name

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is Elsa Lankford. I am the care
partner to my incredible wife,

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Kristine, who has stage four
colorectal cancer.

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Elsa: In today's episode and in
a few of the episodes, I am

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joined by my friend Annie
Dolores. She's been a patient

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advocate for CRC for almost
seven years. She's very involved

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in colorectal cancer and KRAS
social media groups and

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communities. She selflessly
shares her wisdom and research

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at conferences and online.

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Elsa: It kind of started back in

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May 2021. Peak COVID. Era. So,
yeah, So she went to her primary

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care for her annual physical and
in the in the bloodwork, her

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iron was low.

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Annie Delores: She was 45 in
2021.

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Elsa: I think she was 48.

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So she was put on iron pills for
a month and had the bloodwork

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checked again and her iron was
even lower.

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Annie Delores: Wow.

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Elsa: So yeah, so there's
obviously something wrong,

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but it didn't seem like, you
know, a big deal.

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Annie Delores: Did she? So she
was anemic. Did she feel tired?

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Elsa: She does a lot of exercise,

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a lot of steps, a ridiculous
amount of steps for normal

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humans.

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So it seemed.

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Annie Delores: She might want us
to edit that out. But I think

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you should hold on to that one.
I think you can prove that

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legally, with over 10,000 steps
a day you're.

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Elsa: On, right?

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Annie Delores: It's clearly. Yes.

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Elsa: Yes. 15,000 steps a day as
your minimum.

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Annie Delores: Oh, my gosh. Wow.

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Elsa: Not normal, but she likes
it In. retrospect. She was

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losing weight.

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Annie Delores: Oh, interesting.

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Elsa: She was doing a ridiculous
amount of exercise.

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Annie Delores: So I was thinking
maybe it might be worthwhile to

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mention her health background at
this point.

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Elsa: So Kristine has been like
I have been vegetarian. I became

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vegetarian earlier than her.

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Annie Delores: Like two months
is no big deal.

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Elsa: Well, it was two years. It
was actually three years. She

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she became vegetarian at the age
of 16.

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Annie Delores: Oh, wow.

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Elsa: So so at that point then,
she had been vegetarian for,

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what, 30, 33 years in 2016, she
had been diagnosed as type two

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diabetic. And after a month,
well, I guess during the the

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month that she was on insulin,
she became diet controlled. She

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did not want to do medicine. You
know, it's like one of those

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things where when you look back
at pictures, then you can see it.

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But when you're living with
somebody and I mean, this was

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COVID, so I was seeing her every
day, all day,

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and it seemed completely normal.

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Annie Delores: It's 15,000 steps
a day. They lose weight like I

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would make cause effect with
that. So I totally understand,

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you know, that you want assume
something, but you're right.

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When you see each other all the
time, you're not going to notice

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what might be more noticeable to
other people or in photos.

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Elsa: Yes. So now looking back,
it's like, oh, wow, You know,

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she really had, you know, been
skinny.

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Elsa: So after those iron pills,
the next step was to check for

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blood in the stool. And they did
find blood in the stool,

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microscopic. Something that she
had told the primary care was

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that she felt a bump like
physically on her stomach. And

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she had she had not told me that
until this started to become

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more obvious that something was
wrong. It turns out that that

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bump was part of her liver tumor.
I don't want to spoil anything,

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but yeah, it was huge. I mean,
it was a huge tumor, the next

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step was to do a CT scan and we
went to where we normally get

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our mammograms. And did the scan.
There was what's considered now

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distant lymph nodes. But

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Elsa: the next step was to do
both a colonoscopy and an

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endoscopy, and the first
available date was on her

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birthday. So so we did that.
They said that they do the

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colonoscopy first, and if that
was clean, then they would do

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the endoscopies, but not to do
both, You know, if it wasn't

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necessary,

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Annie Delores: You were in the
waiting room and you found out

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more.

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Where do they bring you back to?
an office?

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Elsa: It was to like, No, it was
she was on the cot still or the

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gurney. Okay. You know, still
kind of, you know, waking up.

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And they said that there was a
that there was a tumor in her

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sigmoid part of her colon. And,
you know, they they they stopped.

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Annie Delores: How much
information did they give you at

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that point? Just that we're not
doing surgery. It's metastatic

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colorectal cancer with a liver
met. Is that sort of where you

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sort of knew you were at and the
lymph nodes, the.

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Elsa: Well, they didn't
necessarily connect anything

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together, but they did say that
there is a cancerous likely

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cancer. So I don't even know if
they could say for sure. But he

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knew

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Annie Delores: He had to send it.
to pathology.

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Elsa: But yeah, to pathology.
Yeah, but he knew that it looked

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at least cancerous.

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Elsa: When somebody has cancer,
you kind of assume that you just

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cut it out. When you see it, yo
cut it out that if you ask a

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doctor to cut it out, that
they'll cut it out. And it's

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just not that simple. I've had
to go on a huge learning journey

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during this process and in the
beginning it was like, okay,

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well, you came across cancer,
you got to see the cancer. Let's

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get rid of the cancer.

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Annie Delores: Look, when I
found out they they didn't take

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stage four primary cancers out
or usually not until later. I

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was like, What? What is that
about? But then when you realize

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it's going to take you weeks to
recover and they want to start

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chemo right away, if that's the
next step for stage four, they

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want to control everything in
all the metastatic settings and

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all the outside the colon
settings like that's that's the

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primary focus.

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Elsa: The tech had felt so badly
that she was being notified

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about, you know, this cancer on
her birthday that that he bought

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a you know, from the from the
vending machine bought a of Rice

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Krispies treat and wrote in
Sharpie like happy birthday I'm

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so sorry. I'm so sorry that
you're having a bad day. But,

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you know, it was very sweet.

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Annie Delores: Oh, that was so
sweet and, like, ridiculous too

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and lovely.

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Elsa: The thought of her or
anybody our age or younger

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having colon cancer, I mean, it
just seemed impossible. I had an

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impression that it was older
people, an impression that it

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was more older guys and it was
never, never on the radar at all.

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Annie Delores: Yeah, I think
you're so on the money. I think

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people do think of it as an
older man's disease over 60,

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over 70. And, you know, they say
that the biggest risk for cancer

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is age just getting older. And
now it's like it used to be that

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you'd had to be over 50 to be
more at risk. And now it's

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getting earlier for colorectal
cancer, where just being 45 is

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enough of a risk factor that
it's like, okay, I get checked

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out that the polyps removed, you
know, sure of yourself. And I

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mean, she was already taking
care of herself. You know,

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trying to get an annual physical
is a great step for anybody.

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Elsa: After I recorded with
Annie, I actually had to go back

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and look at the calendar because
between the colonoscopy and the

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oncologist appointment, it could
have been a month. It could have

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been a day. I it was such a blur.

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So it turns out that it was the
next week that we met with her

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oncologist.

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Elsa: When we met, I believe,
with her oncologist the first

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time. Well, everything was

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everything in the beginning
anyway, is overwhelming.

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Yeah. And it's it's hard
sometimes to remember that exact

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feeling because time has gone
past and other things seem

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overwhelming. But that was the
most. And when I hear from new

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care partners, when they when
they post on on message boards,

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I always get reminded of how
what it's like being at that in

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the beginning time and not
knowing what's what's going on.

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Annie Delores: Or what's
important.

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Elsa: Yes. Or anything. I mean,
I mean, I went in I mean, we

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both went in not knowing we knew
what it was, but he was mostly

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concerned not about the giant
liver tumor, but about her, her

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distant lymph nodes. And I
didn't understand why. But

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during this first meeting, tha
was what he was the most

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concerned about. He talked about
what plan he had he wrote it

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down I was taking notes, but I
couldn't understand what he was

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saying because he was using
acronyms. Even when he wasn't

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using acronyms, I didn't
understand how to spell words

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like Oxaliplatin and Irinotecan
and.

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Annie Delores: Really, you can't
spell them now. I think that's

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bizarre.

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Hats off to you for being able
to pronounce them.

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Elsa: Well, it was. It was We
got a lot thrown at us.

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Elsa: And he explained that
there is some recent studies

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that showed that because she was
young and because she was

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healthy, other than the cancer
that he thought that should be

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aggressive to try to get her to
surgery, that his plan was to

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put kind of all the chemo's
together and do the most

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aggressive attack on the cancer.

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Annie Delores: So like a triplet.

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Elsa: Exactly. And, you know,
and now now that I know better,

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it was a triplet. It was
FOLFOXIRI. So 5FU plus

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Oxaliplatin plus Irinotecan
typically 5FU is used with

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either Oxaliplatin or Irinotecan.
In this case, it's like putting

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it all together and then adding
Avastin to it.

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Annie Delores: I just want to I
want to ask one question. How

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like a spoiler, how did she do
on the chemo to cheat, tolerate

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it pretty well.

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Elsa: She tolerated it like a
champ. I mean, she had fatigue

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and that was it. This was a lot
of chemo. She was she was lucky.

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She also follows instructions
like nobody's business. She is

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the ideal patient

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for so many reasons, but she
listens to everything that you

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know that any medical
professional says and follows it

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to the tee.

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Annie Delores: So and the other
thing I wanted to bring up is

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that one of the things that is
available is the NCCN, like the

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National Comprehensive Cancer
Network, something like that.

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And they have actually
guidelines for rectal cancer and

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for colon cancer, Like I try to
like promote it and just say

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if you print it out and you can
use it to write notes, you can

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see that word oxaliplatin
written out or you can, you know,

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you can have that kind of cheat
sheet to figure it out because,

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you know, understanding what
it's what's being said to have a

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little head start or to be able
to like, look it up on a piece

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of paper. It's a it's a lot to
take in and it's a lot to write

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notes that aren't scribbles that
are indecipherable. And it's

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really well written.

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Elsa: I found that afterwards,
and I found it incredibly

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helpful. But of course it was
afterwards and it helped explain

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for me, it was like the the
Cliff notes of yes, what I wish

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I had had beforehand. But I by
ended up with after and yeah

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that's that is a great idea to
have it with you.

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Annie Delores: You know having a
notepad is one thing, but having

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like a cheat sheet of these are
probably the things that are

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going to come up the genetic
testing or the mutational

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testing or like all the
treatment things. I did want to

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go back, you know,

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Annie Delores: go a little bit
further with the meeting with

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the oncologist and like in terms
of understanding it or like

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having too much information, is

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Elsa: this had come up to the
tumor board. The tumor board is

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basically where oncologists and
radiologists and surgeons and,

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you know, a lot of different
medical professionals in the

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cancer center go through
patients cases. And they come up

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with plans. And that way it is
not just one person's point of

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view, it's getting the point of
view of multiple people and

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multiple departments. And it is
crucial!

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Elsa: So her case had come up to
the tumor board and he had roped

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in a liver surgeon and a colon
surgeon and they were already

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kind of part of the team. And he
had a plan that he was kind of

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working on with them. But for
that plan to happen, the chemo

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had to happen first and the
chemo had to work. And and it

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needed at least ideally like a
50 percent reduction, primarily

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the liver tumor, because that
her her big liver tumor was over

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half of her liver.

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Annie Delores: They thought it
was limited to two mets and that,

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you know, if they could get to
shrinkage, then she could be

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eligible for surgery. And so
that's why they had that as a

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goal. Does that sound right?

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Elsa: Yes. The remaining part of
her liver was healthy and the

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liver surgeon believed that he
could remove the cancer from her

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liver.

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Annie Delores: I guess the
takeaway is that it's. Like some

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people at first, they might not
even think they have a chance to

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get to liver surgery. But if you
have an exceptional response to

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chemo, you know, then you can go
to an expert liver surgeon and

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see if they think it's surgical.
It's it is like you said, it's a

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complicated disease and it's
anything can happen. And they're

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trying to prepare for anything
can happen. And part of it is

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preparing for something good can
happen.

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I think

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Elsa: I mean, he

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Elsa: was. Also very realistic
with her. And with us and said

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that there was a, you know, the
chance of her getting to liver

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surgery was 20%.

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Annie Delores: Oh, wow. Wow.
That that's amazing that she

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made it. 20%. Wow.

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Elsa: Yeah. Yeah. There's a lot
of statistics with this disease

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that are mind boggling

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Annie Delores: And some of them
you never forget.

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Elsa: That was one that I will
never forget

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Annie Delores: And you heard
that the first day. The first

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appointment with the oncologist.

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Elsa: Yes. Now, what I did block
out

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was when he asked if she wanted
survival statistics and she said

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yes. And there's a lot of crying

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from that from those numbers
that were said.

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They are

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humbling, to say the least, and
hopefully continuing to, you

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know, get better.

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But yeah, that 20% became the
hurdle to get past. That was THE

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goal. And that's that was that
was really like the only goal

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was get to liver surgery. Then
we'll see what's next. But we

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have to get the liver surgery
because it was very clear that

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if she didn't get to liver
surgery, that this was.

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This was going to be a...

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Annie Delores: This was not
going to end the way, you wanted

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it to.

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Elsa: No. No.

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Annie Delores: So Kristine asked
for that to be told.

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Elsa: He asked if she wanted to
hear it. And she said yes. I

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said no.

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Annie Delores: Oh,

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Elsa: yes. Oh, because he wasn't
asking me. But I still gave my

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opinion. Because I didn't want
to know.

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Reading them and then hearing a
doctor tell you are two

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different things. But also
reading them was also, you know,

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horrible.

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Annie Delores: And

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Annie Delores: is there anything
else about getting diagnosed

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that you want that we haven't
talked about or.

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Or that why you feel like a
podcast about getting diagnosed

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is important?

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Elsa: Everybody has a story.
Maybe not exactly like this,

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because it's Kristine's story.
Life changes.

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So.

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Incredibly much. You know, at
this point, every changed.

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Everything that I ever thought
was important all of a sudden

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became it. It was no longer
relevant. The only thing that

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was important was for her to be
in that 20% category, to get to

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that liver surgery. That was the
only thing that mattered.

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Outro: Thank you for joining me
for this episode of Care

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Partners Compass: Navigating CRC.
Please listen up for the next

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episode, which will come out
next week. If you subscribe to

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the podcast on your favorite
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exactly when the next episode
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share the podcast with your
friends and family. The

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transcript of Care Partners
Compass: Navigating CRC and

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00:20:59,833 --> 00:21:02,743
additional links can be found on
our website

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Carepartnerscompass.

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transistor.