Care Partners Compass: Navigating CRC

S2Ep6 Cancerversaries From a Stage 4 CRC Care Partner Perspective
Care partners Compass: Navigating CRC
Elsa Lankford

Elsa 0:01
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. As a 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 0:45
So this is the episode about Cancerversaries, and I think I'm on take four so I am recording directly from the heart, as opposed to an outline, which, means that I will likely be recording this multiple times. It's not that I haven't tried to put stuff on paper. It's just, cancer and, and illness, and talk of death are things that, as at least Americans, we tend to gloss over and not think about until we absolutely have to. And because of that, none of us are prepared when a cancer diagnosis happens. Not that we should be prepared, but

1:41
to say that it's difficult, especially with a stage four diagnosis, when your loved one gets that, it changes your world.

1:51
Um, since this is about Cancerversaries, and Kristine just had her fourth Cancerversary this past week, I'm reflecting on four years of being a care partner, and what I've learned, what I've learned and forgotten and

2:11
and probably in there is things that I wish that I could learn.

2:18
yeah. So four years is quite an achievement, but, knock on wood, I'm knocking on my hard head. This is going to be the earliest of Cancerversaries, and there'll be plenty more to come. Stage four colorectal cancer is a disease that needs a lot more of everything. I've said this many times. I've typed it many times. I feel like I could, wear this on a every and people may not still get it. This is a disease where stage four colorectal cancer has an overall survival of 30 months. And that is a messed up number. That's me using my filter. That is a messed up number.

3:15
And we've known multiple people that have passed before that 30 months. We've been really good friends, almost family, with somebody who we lost to this disease.

3:33
So one thing I'm going to say about Cancerversaries is a very quick political message. And that is that cancer is not political. And there's a lot of stuff that's been going on in the federal government regarding cancer research and staffing.

4:01
And that has become, other than being a care

4:08
know, advocating for colorectal cancer research, this is

4:16
my everything. This is the hill for that's not necessarily regarding a Cancerversary, but that is what allows people to have more Cancerversaries.

4:30
Cancer research funding and staffing.

4:34
And I'm trying not to get mad here. it looks like there's some promising movement happening despite efforts from the executive branch. And I hope that, if nothing else that you learned from podcast, all the episodes, is how important research

4:57
is.

5:00
Because that 30-month statistic

5:04
It's slowly gone up. It used to be six months.

5:10
And it got longer because of research. It's going to continue to get because of research.

5:22
So that's now out of the way.

5:26
so back to Cancerversaries.

5:30
I learn every day about how different every single person's cancer is with stage four colorectal cancer. There's different mutations. the metastases are in different organs. People have different tolerance to treatment.

5:52
And people have different ways that they are able to live with their diagnosis. So

6:01
while in the very beginning. There was just a 20% chance that, you know, Kristine would make it past two years if she could get to that liver surgery. She did, and she got past two years, and we're at four years, and she still has cancer.

6:21
In the beginning, like other people that aren't, part of cancer land, I thought that cancer was more black and white. You have it, then you don't have it, or you have it, and then you're dead, and there's this in-between that a lot of people with stage four have, and that's that you have it, and you're trying to get it down so that

6:57
you can, know, hopefully get to another surgery, another procedure. That research has come up with a targeted treatment or an immunotherapy that works better for microsatellite-stable colorectal cancer, and some of these things are happening. there are some promising immunotherapy drugs that are out there that are in trials, multiple of them that have almost a 20% response rate,

7:35
and saying all these words, is another thing that I've learned. I've learned a lot

7:43
Reading and searching and pouring through cancer research articles and presentations and posters and biopharma finance stuff.

7:59
The podcasts that I listen to are unbelievably boring to anybody other than me, I think. My YouTube is just, everything that I watch and listen and read is cancer related.

8:16
And I'm actually okay with that.

8:22
I now on our dining room multiple issues

8:28
um, oncology medical journals that are coming in the mail, because I'm an as a patient advocate. I felt like I needed to learn all this stuff because, because this, because this disease needs hope and options, that comes out of research, and

8:52
there are a lot of trials that are happening, but how do you keep up with all of that? How does one human being? How does a doctor keep up with all of that? I'm not saying that,

9:07
I guess also I need hope. I need to see that there's options. It helps everybody to see that there are some things coming down the pike that might help.

9:22
So other things that I've learned is to know that there's going to be

9:30
smaller blocks of time where we know what the cancer is doing, or we know that the drugs are keeping the cancer down. both, both of us are planners, and it's really hard to plan when you just don't know what the future is. So doing really fun things as often as possible, but keeping them scheduled closer. we may not what the treatment schedule is then, or if there's going to be a scan then.

10:07
thinking of time in different kinds of blocks, if we want to say that we want to do something, then we should do it pretty soon. Because we know that, you know, both of us are feeling because as a care partner, I need to take care of myself. And so I need kind of make sure that I'm feeling good. But I need to be healthy and healthy so that I can help Kristine and be able to do these, you know, fun things whenever we want to. Trying to find people that understand that are in similar situations

10:49
that they get it.

10:52
Because there's a lot of ups and downs. if you look at, you know, test results, if you look at all these things, it's like a little mountain range, you know, there's a lot of ups and downs with this disease. So people that understand that

11:10
things don't always go in one direction, they go in both directions,

11:20
So due to my no outline method of working on this might seem a little jumbled, although, you know, there's the beauty of editing. Maybe I will, I will very likely

11:36
fix some of this and probably take this part out.

11:44
I'm going to step away from the fact that this is about what a cancerversary itself And more that it's been four years since her diagnosis. And as a care partner,

11:57
how have I changed over these four years? I've become far less work oriented. Work used to be not my entire life, but a big part of my life. And now it is

12:14
what provides my, and her insurance and my paycheck. But I am not consumed by work like I had been because I know my priorities and I have one, and that's Kristine. Well, two, I do need to take care of myself. So I have two priorities.

12:44
I am stronger than I thought I was, not in the physical ways that I'm working on.

12:53
I've been able to do some things that I didn't think I could ever do. I'm very wimpy with

13:00
medical and body stuff. And I've really become a lot better in that sense. So I'll do what I have to do. I have become an advocate for patients and care partners for this disease, a disease that I barely knew. And now I'm way too aware of. And that patient advocacy has really

13:28
become most of who I am. I I hate that we have to put ourselves into, um, into categories like that. I'm not just a care partner. I'm not just patient advocate,

13:45
but they're a really big chunk of my life. And I'm really happy about that. I mean, that's one of the good things that's come out of this, I think, is that I hope to make some kind of difference, even if it's the smallest difference. I'm trying to think of what else I've learned

14:05
I'm a different person than I was four years ago. There is no doubt about that.

14:14
I

14:16
know heartache much more than I ever could have known. I know hope more than I ever could have known. And this isn't, I hope this does not come off as me trying to get sympathy, because that's not what this is. I just hope that people get a better understanding of what it's like.

14:40
I'm not the person with cancer, so I can't talk about that. But I deeply love and care for somebody who has it.

14:53
And it's a cancer that is a real jerk.

15:01
And it's smarter than I would like it to be. But

15:10
we're four years in.

15:15
Part of me, while I hoped that we would get to this point, knew that it was a distinct possibility that we wouldn't.

15:28
So here's to way more than four years. And here's to fully funded and staffed cancer research. Because that's the only way we're going to do this. F-cancer.

Intro/outro 15:46
Thank you for joining me for this episode of Care Partners Compass: Navigating CRC.

15:57
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