Care Partners Compass: Navigating CRC

S1Ep10 Just Say Yes
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 0:46
Today's episode is about saying yes, which is important in cancer land, but outside of cancer land as well. When I thought about who to record a conversation with about just saying yes. Liz a friend and fellow stage four care partner from Vancouver, came to mind and she was gracious enough to say yes.

Liz 1:13
So I am Liz Dustan and I

1:20
am the mom to Hannah and Haley. They are twins. Haley was diagnosed shortly after her 19th birthday on June 1st of 2022 with stage four colon cancer.

Elsa 1:36
Do you want to talk a little bit about how we met?

Liz 1:40
Yeah, definitely. we met through a stage four care partner support group in Colontown, which like a Facebook support and advocacy group we had a phone call early on in Haley's diagnosis and I was still in a bit of a diagnosis, fog I think just the talking to you, I think was important. It wasn't even the information, it was the talking and getting the support of other care partners. that was what kind of got me through, was having support of people in that group. I saw maybe your post in the group about does anyone want to play Among Us? And then I said yes, even though I had never played before. but I thought, I really like these people. This sounds, fun so there was a bunch of us that we started playing Among Us, and I did not really get any better.

2:46
I enjoyed it immensely. And then us and one other care partner and Kristine all started playing Overcooked together I think we played weekly for about six months. Yeah. And it was just like a really, good self-care and connecting with people who get it. And I think from that we sort of built this really lovely friendship and then you came up and visited me And your guys support has been so helpful all along this journey and that group in general

------ What does "say yes" mean to you? ------ 3:27

Elsa 3:27
what does "say yes" mean to you.

Liz 3:30
So say yes to me means that everything in cancer land is so uncertain. We can't plan more than three weeks to three months out because we don't know how things are going to go. So say yes really means to me, if an opportunity presents itself, you go for it. You just take it because you don't know when another opportunity will come up or even if you'll have time for another opportunity. Becaus you don't know if you or your loved one will be around to do that thing ever again. for us, that included a lot of small things and some really big things. So for small things, basically if Haley had the energy to do something that day, we were going to do it because we didn't know if she would have energy the following day or the following week. if she woke up and was like, I want a cheeseburger for breakfast, then we were going to get cheeseburgers for breakfast. And if she woke up and said, Let's go on an adventure to the city today, then we went to the city. we were super fortunate to be able to have support from a foundation called Melanie's Way. And they help fund experiences for young women with stage four or recurrent cancer in Canada. they were able to help us get to Disneyland with us and our best friends, which was such an amazing experience.

Elsa 5:29
that's awesome.

Liz 5:31
Yeah, it was really incredible. we had booked our trip to go for June of 2022, and then Haley was diagnosed on the 1st of June, so we weren't able to go on that trip. All eight of us. And so Melanie's way made it happen in April of 2023. So one year ago today, we were actually in Disneyland. And it was just a really amazing trip, made really beautiful memories for all of us together. Oh, we got to see the Stars of Drag Show. So we saw a bunch of Haley's favorite drag artists, she went to a bunch of concerts with her girlfriend They also went to Disneyland, the two of them, and then they went to Maui shortly after really it was just about Life is short. Yeah, let's do it, you know? Yeah,

Elsa 6:29
That's incredible. I think particularly with this intersection of COVID and cancer, it made saying,

Liz 6:36
her

Elsa 6:36
yes, be a little more tricky at times. But

6:42
I think that getting into that mindset is really important it's so easy to say no,

Liz 6:49
right?

Elsa 6:50
You just put it off and. Yeah, yeah, yeah, I mean, I think going to see you guys up in Vancouver was definitely, well, that was I guess another experience for you. Yeah. Yeah.

Liz 7:04
Oh no, it was amazing.

Elsa 7:06
It was so cool usually when we take a trip, we plan ahead of time. But with cancer, like you said, planning means something completely different, right? it needs to be, when there's energy, in between treatments, between doctor's appointments

------ The Three Month Schedule ------ 7:23

Liz 7:23
I don't know how it is for you guys there but here in Vancouver at BC Cancer, basically we do everything on a three month scale. All right. So she would have a CT or an MRI every three months. And so that was kind of like how we knew how things were going and what her cancer was doing. her general day to day we would monitor as well. She'd have bloodwork every two weeks. you really can't plan anything. past that.

Elsa 7:53
Yeah,

Liz 7:53
Right. Three months was kind of like the limit because we knew within that time, unless she had some sort of infection or whatever that took us back to the hospital, we were probably going to be able to do whatever it was. But outside of that, she might need, a different treatment schedule or a surgery or whatever. So yeah, yeah, you kind of learn to work on this three month schedule of your life, which is really hard. But in a lot of ways it puts things into perspective. let's do everything we can in these three months because we don't know what the next three months is going to hold.

Elsa 8:33
Yeah, definitely.

Liz 8:34
Yeah,

------ People in cancerland can't really plan too far ahead - be flexible ------ 8:35

Elsa 8:35
yeah. It's hard sometimes to try to get friends and family members that aren't in direct cancer land to be understanding of that point. And they'll either try to plan something super far ahead or like oh we should do something sometime. It's like, okay, when let's put on the calendar,

Liz 8:57
I need a day, I need that time because we have, like 400 doctors appointments between, oncologist and general practitioner and, pain and symptom and counselling and, bloodwork and all of the different things I need to plan this, like let's put it in the books.

Elsa 9:17
Yes.

Liz 9:18
So pick a time and then I can work the rest of my life around it.

Elsa 9:21
Exactly.

Liz 9:22
But I also know that we may have to cancel because maybe that day she doesn't have the energy for it Haley had a rough time as she was fighting this infection for most of her cancer experience. She ended up getting C diff. She was just in and out of the hospital a lot.We did a lot of weekends to three week kind of stays at the hospital. we ended up having to cancel a lot of plans. you kind of have to you have to plan things, but also be incredibly flexible and know that things might have to change on a whim. it's a hard place to be. It's a hard way to live life, I think.

Elsa 10:05
yes, period. And yeah. And also if you're used to planning ahead, which I think but most people are, I mean just today I went to the dentist and I booked like three appointments, so I was booking an appointment in February of 2025. Whoa. Which was like, Oh, yes. Like, that's

10:36
nuts. but yeah, it's it is definitely a different way of thinking.

------ Haley's diagnosis at 19 ------ 10:45

Elsa 10:45
So I know that Haley was diagnosed at stage four.

Liz 10:50
by the time she was diagnosed, it had spread. Not only was it enveloping her colon, it kind of had it it spread to her liver and her lungs. And it was in both of her ovaries. I believe her spleen and kidney potentially. And it was like the tumor that was enveloping her colon was also enveloping her uterus. S and peritoneum. So it was really extensive. By the time that we caught it. her outcomes from the beginning were not looking great. Oh, I think we at the beginning were really hopeful. She had a really amazing response to treatment and she was young and healthy otherwise. So we were really, really hopeful for about eight months, I think maybe nine months. And then her first line of treatment stopped working and we switched her from the chemo that she was on from FOLFIRI on to FOLFOX. And she had a few months of that We think maybe it slowed down her cancer, but it didn't really do a whole lot.

12:24
Her cancer was super aggressive and it would sort of like be dormant for a while and then it would just sort of explode and grow.

12:35
Immunotherapy was not an option for her. So after FOLFIRI and FOLFOX, her next option was Lonsurf. And Lonsurf is sort of the last line of defense.

12:54
for colon cancer. And so she did two months of Lonsurf

13:02
and was just getting ready to start her third one when she was hospitalized because of confusion. And they found a pretty significant small bowel obstruction, which was where the confusion was coming from. And at that point it was decided that she would need to be moved to hospice. So she went into hospice. on October 15th,

13:30
2023, and she passed away on October 27th, 2023. So we got 12 days in hospice with her, and that was 17 months after her initial diagnosis. So very fast. Yeah,

13:50
Yeah, it was a, it was a whirlwind.

Elsa 13:52
Yeah.

------ Haley's impact on her medical team ------ 13:53

Liz 13:53
And it was just really, really, really hard. It was

13:59
incredibly difficult time for everybody, for her, my husband and I, for our other daughter, Hannah for Haley's partner Mac and for Haley, Right. Like Haley, she was a trooper. Her like we would we would go to the cancer center and people loved her. You know, she was super chatty, super bubbly. She would chat with all the nurses who would be, doing her blood work and, you know, they'd talk about all of Hayley's tattoos everybody loved when Hayley would come in. She had this incredible relationship with her palliative team, her doctor and her nurse and her oncologist as well.

14:55
And she just yeah, she would light up a room at at the cancer center, which was incredible to see. But then there was also this really, really hard side of it when you we would go home and we would be sitting at home in the evening and we'd be alone, just me and her or me and my husband and her And she would just cry, you know, She was just she was so scared and so sad. as a parent, I think there's nothing more awful than seeing your child dying and there's nothing that you can do about it. yeah. So it was just it was a really, really hard time for all of us.

Elsa 15:48
Yeah, Not sure what to say after that. It's just. It's so fucked up.

Liz 15:54
It is fucked up. It is. It's super fucked up. because she was so sad and she was so depressed. It made it even more important for us to say yes to those opportunities when they came along to really balance out as much as we could that really hard

16:17
experience, you know? I don't think we knew from the beginning that she was not going to make it. We had a lot of hope and a lot of optimism, but probably around her first Christmas, like Christmas 2022, I started to realize that this was not going to go well. And then when her first line of treatment stopped working, we really kicked it into high gear because we knew that she wasn't. She really, barring a miracle, was not going to make it. Yeah. so we wanted to fit as much life into whatever time we had with her. And I think, you know, we did right. it's never going to make up for the fact that my kid died when she was 20 and she's never going to have the rest of her life. But, you know, we did some amazing things in those 17 months, and I think we made it as as good as it could be, you know?

------ As a carepartner, saying yes for you ------ 17:31

Elsa 17:32
in terms of from a care partner point of view, do you ever say yes for you?

Liz 17:39
Oh, probably not as often as I should.

17:46
When Haley was going through treatment, I think pretty shortly after she was diagnosed, actually joined a pottery studio. And it's something that I have loved. I have really found joy there. And so I think that it's definitely something for me that I have done. But there's also just so much guilt around it. I think. there's so much wrapped up in cancer care, you know, all like I said, all the appointments, all of the everything.

18:27
And so it is hard to carve time out for yourself.

18:35
I think for Haley,I don't know what it's like for Kristine, but definitely for Haley. She was very afraid of being alone, so she didn't want to be alone with her thoughts because that's kind of when the dark thoughts would, would creep in. And so

18:53
she always wanted someone with her. And

18:59
I was off work for most of her treatment. I tried to go back, I think, for about six months and then it just I couldn't do it. So

19:10
a lot of the time it was me. I was with her during the day. while, my husband was working and yeah, it was hard to sort of set those set those boundaries with your kid who's. Yeah, really sad and really sick. Right. Yeah. So, yeah, it was tough. It was definitely tough.

19:34
now with trying to take care of Hannah, our other daughter, while she's grieving, it's also still hard to, you know, kind of carve out that time for myself. And now, you know, I'm just. I'm depressed, so that makes it extra hard. Yeah, but, yeah, no, it's. It's definitely a tough one for sure.

20:02
What about

Elsa 20:04
My my carving out time for me is, is mainly when I play plants versus zombies. Totally game and listen to Taylor Swift. Those are things that Kristine doesn't want to hear Taylor Swift.

20:26
Yeah I think we're in different situations But yeah as care partners, we're in this kind of impossible situation of not having any control over anything. Oh, yes. Which really sucks. So I think there is an extent where you can go too far, the care partner needs to take care of themselves because otherwise you're going to be a really bad care partner. I enjoy the same things that Kristine does.we're not used to being spontaneous beings, but like, let's live in the truly now and yeah, and so it's always doing fun stuff, which I think helps all the way around. It's I don't think it's just a distraction. And I just think that it's just so necessary.

------ Haley's Big List of Life ------ 21:16

Liz 21:16
Absolutely. Yeah, I'm going to bring up a picture so that I can look at it of Haley's bucket list, Haley made this bucket list. We called it Haley's Big List of Life. So it looks like she made it in July of 2023. and we posted it on Instagram. We had this Instagram account that we could keep everybody updated on what was happening with her, and people were outstanding One of her things was to go paddleboarding, and I think we had eight different people reach out to us and say, I have a paddle board looking on board any time like we have one. So it was amazing. And

22:10
yeah, I think we finished her entire list. yeah, just like I'll just read some of the stuff out, like swim in the ocean, go to a concert, get a new tattoo, paddle boarding, obviously go to a museum or art gallery, go to a baseball game,

22:35
do a road trip, read a book, cover to cover and tell people I love them. Like one of the things on her bucket list was to pet a Bernese Mountain dog. it was just one of those serendipitous moments. We were at the park and this man walked by with two Bernese Mountain dogs. And Haley was like, Hey, can I pet your dogs? And he said, Yes. So, you know, it was just it was a lovely a lovely thing. I think she did it all like she she did all of the things that she wanted to do. And it's tough to look back on and feel like that's all she'll get to do, you know, when it gets hard, when a life is finished and there's so much more potential, you know, But, oh, but the life that she lived with was extraordinary.

23:36
Like some of our favorite moments were just, you know, the four of us hanging out together.

23:47
Hannah was living on Vancouver Island throughout Haley's

23:53
diagnosis. And so when she would come home for the weekend or we would go over there to visit her for the weekend, it was just really special. I got to,

24:04
you know, spend some quality time, just the four of us, and make memories, you know, like, yeah, super important. Um, I think one of my favorite times with Haley was we were outside and it was snowing and we, like, threw snowballs at the dog and took a bunch of selfies. And those pictures are some of my favorite pictures that I have of me and Haley together.

24:41
another, facet of saying yes is Really saying yes to that. Care for yourself. we were saying about, my pottery classes and stuff, but also saying yes to joining support groups and making friends and reaching out to people who get it and going to counseling if you can afford it I think encouraging your person, your cancer patient. Yeah. To say yes to things. So for Haley,

25:16
I strongly encouraged her to join things with other cancer patients. So she at my pushing, went to a couple of events with a group called She Defines Strength. So they provide support and community for young women with cancer in Vancouver. And she met some amazing people there who she really connected with and was able to sort of have that shared experience of being a young woman and having cancer and kind of like what that means for

25:58
relationships, both romantic and friendships and kind of moving through the world when all of your friends are in university and you are sitting at home connected to a chemo bottle, right?

26:14
So I think that was incredibly helpful for her. my husband took up sword fighting during Haley's diagnosis, which has turned out to be so healing for him. And he has found really amazing community there. I think just finding those things that sort of like bring you calm and joy in this really uncertain and crazy time of life, you know?

Elsa 26:48
I want to thank Liz for being able to do this episode such grace and openness. I know this wasn't easy for her to do, but she immediately said yes to doing this podcast and I think that she has a very important voice and story to share. A quick note that this is the next to last regular episode of this season. Please join us next week where I will have as my special guest, Kristine, who will talk with me about healthy distractions A.K.A. trying to not think about cancer all the time. Thanks to everybody that's been listening to the podcast, I am going to definitely do a second season that is going to start in August. There might be a couple of summer podcasts released as well. So if you subscribe on Spotify or Apple or YouTube or wherever you're subscribing, then you'll be notified when the next episode comes out.

Narration 27:58
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

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Carepartnerscompass.

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transistor.