S1Ep4 The Pivot (Part 1)

Welcome to the fourth episode of Care Partner's Compass: Navigating CRC on The Pivot (part 1).

Having backup plans, and being able to pivot quickly is essential, especially with a stage 4 colorectal cancer diagnosis.

In this episode, I talk about the need to pivot, what that entails, and some tips not just for care partners, but for friends and family. (Spoiler alert: Be there to listen and also do fun things)

Full transcription can be found on the website (http://carepartnerscompass.transistor.fm)

Host, producer/editor, and composer: Elsa Lankford


And all the thanks and hugs in the world to Kristine. You are amazing.

Please remember to share, subscribe, like, and rate the podcast.

Helpful links related to this episode:

• Colontown - they have great groups for liver mets and other metastasis locations, clinical trials, for CRC care partners and patients per geographical area, and some separate groups just for care partners, and just for patients. Very science-oriented.
• Fight CRC's Community of Champions - stories, Q&A, community, and resources for CRC patients and care partners.
• What's Next - Kristine's Spotify playlist for the first pivot. She creates a new playlist for each new part of this cancer journey.

• (01:40) - Confusion when entering CancerLand
• (02:47) - Thinking about backup plans, before you need them
• (03:52) - Ways to try to monitor CRC
• (05:32) - Reasons to pivot
• (05:56) - Keeping different timeframes in mind
• (07:13) - Hard to plan during a pivot, but hopefully friends and family can help and not create more stress
• (08:42) - Having your own care circle, like #TeamKristine, which may change over time
• (09:43) - Finding comfort in researching
• (11:18) - Finding the place between optimism and reality
• (12:06) - What do you need to do as a care partner during a pivot
• (13:00) - Our first pivot

Creators & Guests

Host

Elsa Lankford

I'm the host of Care Partner's Compass: Navigating CRC, a patient advocate for colorectal cancer, and a care partner to my incredible wife Kristine. I am an artist, composer, educator, and podcaster. I'm a professor in the Electronic Media and Film Department at Towson University.

What is Care Partners Compass: Navigating CRC?

A podcast for care partners, cancer patients, and anybody who knows or loves somebody with cancer, particularly colorectal cancer (CRC). Care Partners Compass is told through the lens of a Stage 4 CRC care partner with occasional guests.

Season 1 will be primarily from my personal experience as a stage 4 CRC care partner. Topics will include diagnosis, biomarkers, clinical trials, second opinions, finding hope and joy, and more.

The podcast trailer is out now. Please listen and share widely.

Logo design: Kristine Dunkerton

Episodes will be dropping in March 2024 - Colorectal Cancer Awareness Month.

If you are 45 and older, or are any age and are experiencing anemia, unexplained weight loss, or other symptoms, please schedule your colonoscopy.

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.

S1Ep4 The Pivot (Part 1)
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 0:48
Just like stage four cancer doesn't necessarily move in a straight line. This podcast chronologically isn't going to necessarily move in a straight line either. This episode is named The Pivot. Part one That's something that you have to get used to doing, particularly in stage four colorectal cancer. And I wanted to talk about what that looks like, what that feels like from a care partner's point of view and how it's possible to try to prepare ahead of time for doing a pivot. And this is by far the most times that I have said the word pivot ever. As I had mentioned in Episode three on biomarkers, it took us a while to know that there were biomarkers and then even longer to understand them.

------ Confusion when entering CancerLand ------ 1:40

Elsa 1:40
When you get dropped into cancer land, Your inner compass gets all turned around because everything about your entire life and all of your plans have just shifted. And then you get thrown into this other world where the vocabulary is meaningless and confusing. And when in the past it seemed as if there was always, you know, a medicine or an operation that could fix something. So it's confusing. And if you haven't had a whole lot of experience with cancer in your immediate family or your friends or you have accidentally been the kind of person that now you're so aware of where you think that you're giving somebody with cancer space when really you've kind of ghosted them.

2:35
Then you may not fully understand the limits of anything in cancer. especially in colorectal cancer,

------ Thinking about backup plans, before you need them ------ 2:48

Elsa 2:48
because cancer is really smart. And so much of this journey is trying to get rid of the cancer before the cancer outsmarts the tools that are available. And it's important to talk about this in the beginning because it's important to have backup plans.

3:10
Things in cancer are not always going to go the way that you hope. And there's nothing wrong with hoping and there's nothing wrong with keeping that hope and not letting the flame of that hope go away because it hasn't gone away in me. but the feeling of having to pivot before you realize that that's something that you might have to do can be devastating. So it's protecting your heart. It's stealing yourself up and in a way relieving some of the stress because, you know that there can be something to pivot to.

------ Ways to try to monitor CRC ------ 3:53

Elsa 3:53
So with colorectal cancer in particular, there's four ways of getting information about the disease. One is CEA, a tumor marker That can be looked at every two weeks to monthly Kristine. gets her CEA checked monthly on average.

4:14
There's CTDNA testing, which looks for tumor cells in the blood. And that can be anything from monthly to every three months or six months. There's scans which are probably every three months.

4:34
And then there's a biopsy or an operation where you have some kind of pathology report. a doctor has physically looked inside, and has a sense of what's happening with the cancer. These may not be great ways of monitoring the disease for everybody. CEA as a tumor marker works for about 60 to 65% of CRC patients.

5:04
CTDNA doesn't always work if there are metastases in the lungs or the peritoneum scans don't always show everything and not everybody gets to an operation or has an operation. So there are definitely limits to how the disease is monitored. But between monitoring and talks with the oncologist, there can be clues about the direction that the cancer is going.

------ Reasons to pivot ------ 5:32

Elsa 5:32
pivoting doesn't need to necessarily only happen because cancer progressed, it could be that new opportunities have come up. Maybe that's a new FDA approved medicine or tool? It could be that an existing treatment isn't keeping up with the cancer or it's trying something that's more or less risky.

------ Keeping different timeframes in mind ------ 5:57

Elsa 5:57
I have found that the way that I can keep backup plans in mind is by keeping different timeframes in mind.

6:09
Because especially at first, it's about getting through that day and for your loved one, it might be getting through that infusion or that biopsy or that operation. So sometimes just, you know, getting to and through that day is a feat in itself, and is a timeframe to keep in mind. And then there's short term and long term and in cancer land, these words have changed meanings. short term could be until the next important piece of information helps to confirm what's happening. So that could be one or two weeks. It could be a month. It could be three months. And then there's long term. And that's really dependent on where you are in the cancer journey. Is it the next scan? Is it the next month? Could it be multiple months? If you've gotten to NED which is no evidence of disease, where you're not getting tests all the time.

------ Hard to plan during a pivot, but hopefully friends and family can help and not create more stress ------ 7:14

Elsa 7:14
So a hot tip for those who are in the cancer circle aren't a care partner or patient is that it is really hard and at times incredibly stressful or impossible to think too far ahead. planning something that's months out is likely going to just be impossible to answer. But it's also going to likely cause stress. so if you're in a cancer care circle not the direct care partner, but maybe a friend or family member, ask if they can do something that day or that week. Be flexible. The person with cancer and maybe the care partner may not be sharing every single thing that's happening. You may not necessarily know if they're in the middle of a pivot or thinking about the need to pivot. But either way, if this change in direction is Communicated to friends and family. then be understanding. Be compassionate. Listen, And still try to make plans to do fun stuff. But again, to make them soon so that there's less stress. And don't rely on the cancer patient or the care partner to be always making the plans.

------ Having your own care circle, like #TeamKristine, which may change over time ------ 8:42

Elsa 8:43
it can be very hard and very scary to change directions, whether it be trying a new chemo, getting to a surgery, doing a clinical trial, or stopping any of those things. And a quick aside, we have a name for Kristine's care circle, and that's Team Kristine. Some people are really close friends and family members. Others are people that have become really close friends that maybe didn't start out as such, but they provided a level of emotional support that was so helpful and generous. there's the realization that in stage four cancer land, sometimes this journey is going to be sadly short. Sometimes it's going to be very long and there are going to be new people that come into the care circle and people that for their own reasons, need to drop out.

------ Finding comfort in researching ------ 9:44

Elsa 9:44
understanding that the oncologist is the one who has the medical degree and the experience. I still have found some comfort and some stress and anxiety relief in learning to research and looking into clinical trials. For instance, I keep a list of them that look interesting and I follow up on them to see if there's any data that's come in on them, bec that might be something that, you know, Kristine could do in the future. And it makes me feel like in the smallest way that maybe I'm helping. I don't necessarily share all of my research because it can be overwhelming. So I look at, possible clinical trials, promising drugs or procedures that are emerging. Not every care partner has the capacity to do this or the desire to do this, the time to do this. And it's possible that your loved one may not be interested in you doing that. So I think it's completely dependent on the person. But as a care partner, if you think that your loved one is interested in that information and you you don't feel comfortable or have the time to be able to look into it, then definitely pull somebody in to see if they're willing to help.

------ Finding the place between optimism and reality ------ 11:19

Elsa 11:19
Pivoting involves changing directions, and typically it's going to be because you need to go back to something that works or you need to try another line of chemo or another type of treatment to see if that works. The first time that it happened with us, devastating isn't even the word for it because We thought it was gone. We thought the cancer was gone. Both of us did. But it turns out that it wasn't gone. And it has a way of truly crushing your hopes. it's a difficult lesson in finding the the fine line between optimism and reality

------ What do you need to do as a care partner during a pivot ------ 12:07

Elsa 12:07
So this episode is about changing direction, but it's also about you defining your role as a care partner along with your loved one, to understand what you can bring to the table, what they would like you to bring to the table. Does the care partner circle need to widen a little bit? You know, I found that a care partner, at least in my mind, is part cheerleader, part researcher, part realist, has some translation powers, which is not just needed with medical staff, but also needed with friends and family. You're doing what you can to protect your loved one, and that might be protecting their time and might be protecting them from things that they just don't need to waste time or emotions or energy on

------ Our first pivot ------ 13:00

Elsa 13:01
So in Kristine's case, the first pivot was back in June 2022 she had had 12 rounds of chemo, two surgeries, and she appeared to be no evidence of disease. But those bits of information that we get not enough information. One of those bits of information, the CTDNA test, we were hoping it would be zero. We were hoping that the cancer was gone, at least for now, but the number was over 100. It was the highest it had been since diagnosis. And that led to a scan. And we saw that there was three tumours back in her liver. I'm going to try to do an episode just on liver mets. you get this information. as a patient and care partner, the information from scans, the information from test results goes right to the patient. And the patient typically sees this information before the doctor. there's good and bad about that. The ability to come up with questions, prepare questions, the ability to kind of let it process.

14:27
So because of that, I'll just say what needed to change. That was going back to chemo. That was a mental and emotional pivot of being able to think that things were done for now. and understanding that it was going to be biweekly infusions again for an unknown amount of time. So it was not just a change in the plan, although having that plan is so important, there's just a really big change.

15:05
And that happens to people in cancer all the time. Changing where your expectations are. But still keeping a lot of hope. that was the first pivot that Kristine needed to do. And it wasn't the last.

15:22
And it was really it was really hard to tell people. But I think in a way, telling other people

15:32
maybe helped soften the blow just a little bit and It took time. It took mental and emotional energy and it took A lot of really loud dance music There ends up being a lot of dancing here.

15:53
You do what you need to do to make the mental pivot, and then you start thinking ahead. Wh going to be the next step in the plan? And you need to figure out what's the best way to help your loved one, because they may not be communicating all of their fears to you, but you need to be there to support them.

Narration 16:18
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

16:53
Carepartnerscompass.

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transistor.