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.
Elsa: In today's episode and in a few of the episodes, I am
joined by my friend Annie Dolores. She's been a patient
advocate for CRC for almost seven years. She's very involved
in colorectal cancer and KRAS social media groups and
communities. She selflessly shares her wisdom and research
at conferences and online.
Elsa: It kind of started back in
May 2021. Peak COVID. Era. So, yeah, So she went to her primary
care for her annual physical and in the in the bloodwork, her
iron was low.
Annie Delores: She was 45 in 2021.
Elsa: I think she was 48.
So she was put on iron pills for a month and had the bloodwork
checked again and her iron was even lower.
Annie Delores: Wow.
Elsa: So yeah, so there's obviously something wrong,
but it didn't seem like, you know, a big deal.
Annie Delores: Did she? So she was anemic. Did she feel tired?
Elsa: She does a lot of exercise,
a lot of steps, a ridiculous amount of steps for normal
humans.
So it seemed.
Annie Delores: She might want us to edit that out. But I think
you should hold on to that one. I think you can prove that
legally, with over 10,000 steps a day you're.
Elsa: On, right?
Annie Delores: It's clearly. Yes.
Elsa: Yes. 15,000 steps a day as your minimum.
Annie Delores: Oh, my gosh. Wow.
Elsa: Not normal, but she likes it In. retrospect. She was
losing weight.
Annie Delores: Oh, interesting.
Elsa: She was doing a ridiculous amount of exercise.
Annie Delores: So I was thinking maybe it might be worthwhile to
mention her health background at this point.
Elsa: So Kristine has been like I have been vegetarian. I became
vegetarian earlier than her.
Annie Delores: Like two months is no big deal.
Elsa: Well, it was two years. It was actually three years. She
she became vegetarian at the age of 16.
Annie Delores: Oh, wow.
Elsa: So so at that point then, she had been vegetarian for,
what, 30, 33 years in 2016, she had been diagnosed as type two
diabetic. And after a month, well, I guess during the the
month that she was on insulin, she became diet controlled. She
did not want to do medicine. You know, it's like one of those
things where when you look back at pictures, then you can see it.
But when you're living with somebody and I mean, this was
COVID, so I was seeing her every day, all day,
and it seemed completely normal.
Annie Delores: It's 15,000 steps a day. They lose weight like I
would make cause effect with that. So I totally understand,
you know, that you want assume something, but you're right.
When you see each other all the time, you're not going to notice
what might be more noticeable to other people or in photos.
Elsa: Yes. So now looking back, it's like, oh, wow, You know,
she really had, you know, been skinny.
Elsa: So after those iron pills, the next step was to check for
blood in the stool. And they did find blood in the stool,
microscopic. Something that she had told the primary care was
that she felt a bump like physically on her stomach. And
she had she had not told me that until this started to become
more obvious that something was wrong. It turns out that that
bump was part of her liver tumor. I don't want to spoil anything,
but yeah, it was huge. I mean, it was a huge tumor, the next
step was to do a CT scan and we went to where we normally get
our mammograms. And did the scan. There was what's considered now
distant lymph nodes. But
Elsa: the next step was to do both a colonoscopy and an
endoscopy, and the first available date was on her
birthday. So so we did that. They said that they do the
colonoscopy first, and if that was clean, then they would do
the endoscopies, but not to do both, You know, if it wasn't
necessary,
Annie Delores: You were in the waiting room and you found out
more.
Where do they bring you back to? an office?
Elsa: It was to like, No, it was she was on the cot still or the
gurney. Okay. You know, still kind of, you know, waking up.
And they said that there was a that there was a tumor in her
sigmoid part of her colon. And, you know, they they they stopped.
Annie Delores: How much information did they give you at
that point? Just that we're not doing surgery. It's metastatic
colorectal cancer with a liver met. Is that sort of where you
sort of knew you were at and the lymph nodes, the.
Elsa: Well, they didn't necessarily connect anything
together, but they did say that there is a cancerous likely
cancer. So I don't even know if they could say for sure. But he
knew
Annie Delores: He had to send it. to pathology.
Elsa: But yeah, to pathology. Yeah, but he knew that it looked
at least cancerous.
Elsa: When somebody has cancer, you kind of assume that you just
cut it out. When you see it, yo cut it out that if you ask a
doctor to cut it out, that they'll cut it out. And it's
just not that simple. I've had to go on a huge learning journey
during this process and in the beginning it was like, okay,
well, you came across cancer, you got to see the cancer. Let's
get rid of the cancer.
Annie Delores: Look, when I found out they they didn't take
stage four primary cancers out or usually not until later. I
was like, What? What is that about? But then when you realize
it's going to take you weeks to recover and they want to start
chemo right away, if that's the next step for stage four, they
want to control everything in all the metastatic settings and
all the outside the colon settings like that's that's the
primary focus.
Elsa: The tech had felt so badly that she was being notified
about, you know, this cancer on her birthday that that he bought
a you know, from the from the vending machine bought a of Rice
Krispies treat and wrote in Sharpie like happy birthday I'm
so sorry. I'm so sorry that you're having a bad day. But,
you know, it was very sweet.
Annie Delores: Oh, that was so sweet and, like, ridiculous too
and lovely.
Elsa: The thought of her or anybody our age or younger
having colon cancer, I mean, it just seemed impossible. I had an
impression that it was older people, an impression that it
was more older guys and it was never, never on the radar at all.
Annie Delores: Yeah, I think you're so on the money. I think
people do think of it as an older man's disease over 60,
over 70. And, you know, they say that the biggest risk for cancer
is age just getting older. And now it's like it used to be that
you'd had to be over 50 to be more at risk. And now it's
getting earlier for colorectal cancer, where just being 45 is
enough of a risk factor that it's like, okay, I get checked
out that the polyps removed, you know, sure of yourself. And I
mean, she was already taking care of herself. You know,
trying to get an annual physical is a great step for anybody.
Elsa: After I recorded with Annie, I actually had to go back
and look at the calendar because between the colonoscopy and the
oncologist appointment, it could have been a month. It could have
been a day. I it was such a blur.
So it turns out that it was the next week that we met with her
oncologist.
Elsa: When we met, I believe, with her oncologist the first
time. Well, everything was
everything in the beginning anyway, is overwhelming.
Yeah. And it's it's hard sometimes to remember that exact
feeling because time has gone past and other things seem
overwhelming. But that was the most. And when I hear from new
care partners, when they when they post on on message boards,
I always get reminded of how what it's like being at that in
the beginning time and not knowing what's what's going on.
Annie Delores: Or what's important.
Elsa: Yes. Or anything. I mean, I mean, I went in I mean, we
both went in not knowing we knew what it was, but he was mostly
concerned not about the giant liver tumor, but about her, her
distant lymph nodes. And I didn't understand why. But
during this first meeting, tha was what he was the most
concerned about. He talked about what plan he had he wrote it
down I was taking notes, but I couldn't understand what he was
saying because he was using acronyms. Even when he wasn't
using acronyms, I didn't understand how to spell words
like Oxaliplatin and Irinotecan and.
Annie Delores: Really, you can't spell them now. I think that's
bizarre.
Hats off to you for being able to pronounce them.
Elsa: Well, it was. It was We got a lot thrown at us.
Elsa: And he explained that there is some recent studies
that showed that because she was young and because she was
healthy, other than the cancer that he thought that should be
aggressive to try to get her to surgery, that his plan was to
put kind of all the chemo's together and do the most
aggressive attack on the cancer.
Annie Delores: So like a triplet.
Elsa: Exactly. And, you know, and now now that I know better,
it was a triplet. It was FOLFOXIRI. So 5FU plus
Oxaliplatin plus Irinotecan typically 5FU is used with
either Oxaliplatin or Irinotecan. In this case, it's like putting
it all together and then adding Avastin to it.
Annie Delores: I just want to I want to ask one question. How
like a spoiler, how did she do on the chemo to cheat, tolerate
it pretty well.
Elsa: She tolerated it like a champ. I mean, she had fatigue
and that was it. This was a lot of chemo. She was she was lucky.
She also follows instructions like nobody's business. She is
the ideal patient
for so many reasons, but she listens to everything that you
know that any medical professional says and follows it
to the tee.
Annie Delores: So and the other thing I wanted to bring up is
that one of the things that is available is the NCCN, like the
National Comprehensive Cancer Network, something like that.
And they have actually guidelines for rectal cancer and
for colon cancer, Like I try to like promote it and just say
if you print it out and you can use it to write notes, you can
see that word oxaliplatin written out or you can, you know,
you can have that kind of cheat sheet to figure it out because,
you know, understanding what it's what's being said to have a
little head start or to be able to like, look it up on a piece
of paper. It's a it's a lot to take in and it's a lot to write
notes that aren't scribbles that are indecipherable. And it's
really well written.
Elsa: I found that afterwards, and I found it incredibly
helpful. But of course it was afterwards and it helped explain
for me, it was like the the Cliff notes of yes, what I wish
I had had beforehand. But I by ended up with after and yeah
that's that is a great idea to have it with you.
Annie Delores: You know having a notepad is one thing, but having
like a cheat sheet of these are probably the things that are
going to come up the genetic testing or the mutational
testing or like all the treatment things. I did want to
go back, you know,
Annie Delores: go a little bit further with the meeting with
the oncologist and like in terms of understanding it or like
having too much information, is
Elsa: this had come up to the tumor board. The tumor board is
basically where oncologists and radiologists and surgeons and,
you know, a lot of different medical professionals in the
cancer center go through patients cases. And they come up
with plans. And that way it is not just one person's point of
view, it's getting the point of view of multiple people and
multiple departments. And it is crucial!
Elsa: So her case had come up to the tumor board and he had roped
in a liver surgeon and a colon surgeon and they were already
kind of part of the team. And he had a plan that he was kind of
working on with them. But for that plan to happen, the chemo
had to happen first and the chemo had to work. And and it
needed at least ideally like a 50 percent reduction, primarily
the liver tumor, because that her her big liver tumor was over
half of her liver.
Annie Delores: They thought it was limited to two mets and that,
you know, if they could get to shrinkage, then she could be
eligible for surgery. And so that's why they had that as a
goal. Does that sound right?
Elsa: Yes. The remaining part of her liver was healthy and the
liver surgeon believed that he could remove the cancer from her
liver.
Annie Delores: I guess the takeaway is that it's. Like some
people at first, they might not even think they have a chance to
get to liver surgery. But if you have an exceptional response to
chemo, you know, then you can go to an expert liver surgeon and
see if they think it's surgical. It's it is like you said, it's a
complicated disease and it's anything can happen. And they're
trying to prepare for anything can happen. And part of it is
preparing for something good can happen.
I think
Elsa: I mean, he
Elsa: was. Also very realistic with her. And with us and said
that there was a, you know, the chance of her getting to liver
surgery was 20%.
Annie Delores: Oh, wow. Wow. That that's amazing that she
made it. 20%. Wow.
Elsa: Yeah. Yeah. There's a lot of statistics with this disease
that are mind boggling
Annie Delores: And some of them you never forget.
Elsa: That was one that I will never forget
Annie Delores: And you heard that the first day. The first
appointment with the oncologist.
Elsa: Yes. Now, what I did block out
was when he asked if she wanted survival statistics and she said
yes. And there's a lot of crying
from that from those numbers that were said.
They are
humbling, to say the least, and hopefully continuing to, you
know, get better.
But yeah, that 20% became the hurdle to get past. That was THE
goal. And that's that was that was really like the only goal
was get to liver surgery. Then we'll see what's next. But we
have to get the liver surgery because it was very clear that
if she didn't get to liver surgery, that this was.
This was going to be a...
Annie Delores: This was not going to end the way, you wanted
it to.
Elsa: No. No.
Annie Delores: So Kristine asked for that to be told.
Elsa: He asked if she wanted to hear it. And she said yes. I
said no.
Annie Delores: Oh,
Elsa: yes. Oh, because he wasn't asking me. But I still gave my
opinion. Because I didn't want to know.
Reading them and then hearing a doctor tell you are two
different things. But also reading them was also, you know,
horrible.
Annie Delores: And
Annie Delores: is there anything else about getting diagnosed
that you want that we haven't talked about or.
Or that why you feel like a podcast about getting diagnosed
is important?
Elsa: Everybody has a story. Maybe not exactly like this,
because it's Kristine's story. Life changes.
So.
Incredibly much. You know, at this point, every changed.
Everything that I ever thought was important all of a sudden
became it. It was no longer relevant. The only thing that
was important was for her to be in that 20% category, to get to
that liver surgery. That was the only thing that mattered.
Outro: Thank you for joining me for this episode of Care
Partners Compass: Navigating CRC. Please listen up for the next
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transcript of Care Partners Compass: Navigating CRC and
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