Care Partners Compass: Navigating CRC

S1Ep9 Surgery and CRC AKA "Chopped Liver"
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
Welcome to take three of the podcast episode on surgery from a Stage four Care Partners perspective. I'm reaching back in my memory bank, which is part of my problem, although it's a good problem to have that. There's been a lot of time since Kristine's first surgery. I want to focus on leading up to during and after her liver surgery. This was back in January 2022 she was diagnosed in July 2021, and she had a lot of liver involvement the main goal was to have chemo work, to get to surgery and there was a 20% chance of her getting to that liver surgery. a couple of months into the chemo,

------ Getting scans to see if she could get to surgery ------ 1:39

Elsa 1:39
there were scans and they were showing some progress that the chemo was working and her mets, her metastases were getting smaller, which is excellent. Her tumor markers, her CTDNA, her CEA, those are both going down in December. So that was about four months after diagnosis. The liver surgeon wanted a MRI of her liver. MRI's provide a much clearer view of the liver for a surgeon.

------ It was a go! ------ 2:09

Elsa 2:10
based on the MRI, the liver surgery was a go. So at that point there was about a month to prepare for surgery. when I say prepare for as a care partner, it's helping your loved one get ready for surgery Kristine has listened to the second take of this podcast. And one of her comments was that that was her biggest fear was surgery.

------ Getting over the fear of surgery ------ 2:36

Elsa 2:36
And while I knew that surgery was a tough obstacle for her, it really helped to put it into perspective how much of a emotional and mental roller coaster that was for her? She had never really been in the hospital before, and here is going to be this huge surgery. When they talk about risks for surgery, by the way, I always thought that risks meant the risk of what happens during the surgery. But when you're talking about cancer, it's actually the risk of what happens when you're off chemo for that long. She needed to be off chemo for for a month before and then at least a month after. And that kind of goes back to translation. And using a word like risk, that means something different to the doctor than it does to the care partner and the patient.

------ Preparing for surgery ------ 3:36

Elsa 3:37
so as she was getting ready for the surgery, there were some changes that were made. We had a month for her to get ready, and she really took this on herself. I was there more, wearing a little bit of a chef's hat and a little bit of a cheerleader hat. But really, she is the one that did the main work. She ate more protein, less carbs. She was already not eating that many carbs because she was diet controlled, diabetic and protein were both vegetarian. So just kind of working protein in as much as we could to the diet. She did a lot of core and abdominal exercise, sit ups, yoga, anything that kind of helped her core because this was going to be a big abdominal incision

4:38
and cardio. We live on top of the hill and she was running up and down the street in winter, not. Everybody is going to be able to do this for so many different reasons. But

------ "I am ready!" ------ 4:52

Elsa 4:53
this was part of what she needed to do to feel ready. because I could kind of see and hear as she was getting herself ready for the surgery. And that involved, her saying I am ready at first that would be, you know, somewhat hesitant. it was like a mantra to her. her voice would be more and more steady. And then it was more like a not exactly a shout, but you could kind of see over time as she was preparing herself.

------ Getting the house ready ------ 5:27

Elsa 5:28
There are also some things that we needed to get ready for the house. we have a two story house, and I didn't know if stairs would be a problem, but it turns out that that was not an issue. But we did get some wedge pillows because I had read and

------ Helpful for carepartner to get involved in cancer groups ------ 5:43

Elsa 5:43
at this point I was starting to get involved with social media groups about colorectal cancer. So I was learning a how much I didn't know because I thought I knew something and I really didn't. But I was able to see how other people prepared for liver surgery, what it entailed, and I was able to ask questions. before that, I had felt, like we were so isolated. And then finding a community of people who were also going through this. It felt a lot less alone. So I'm probably not going to talk about the surgery itself too much because my memory is bad I just will say that it was, from a care partner's point of view, very stressful.

------ The day of surgery in January 2022 ------ 6:27

Elsa 6:27
It was during a COVID peak, so I couldn't be in the waiting room. I had to be home and getting texts every 2 hours saying that things were going okay. it was a nine hour surgery. I was really going crazy at home. I was trying to distract myself with video games and, you know, talking to friends and and keeping them in the loop because that made me feel like I was doing something. But yeah, it was super stressful. And then I heard from the surgeon that the surgery was a success, During the surgery. They had done an ultrasound so that they could see if there was anything else. And they found another liver met on the back of her liver. they tried to remove that as much as they could, But it was up against a bile duct and he couldn't damage the liver. So that was a question mark. And also the fact that her original big liver met had been so big that that created its own complications as well. that's why the surgery took so long.

------ 2nd opinions - they are so so important ------ 7:36

Elsa 7:36
I'm putting a plug in here for second opinions if Kristine had gone to a different cancer center and just seen an oncologist, they may not have said that she could get to surgery because she had a very complicated set of factors in terms of how large her liver met was, that she had lymph nodes. getting a second opinion is just so important. You need to be able to talk to a surgeon and ideally have surgeons talk to oncologists. it was just so lucky that she was able to be at a place where from the get go, she had a medical team that was looking at her case and not just one person.

------ The day after the surgery ------ 8:15

Elsa 8:16
back to the surgery. She stayed in the ICU overnight and I was able to visit the next morning This was January 2022, so peak COVID Code Red at the cancer center. No visitors unless there's a special permission. I knew that she needed to walk, but it seemed crazy that she was able to walk a lap, just hours essentially, after this nine hour surgery. that next day on the fourth, because I know Kristine keeps her notebooks very organized. I have written down three laps, one ICU, two on the fourth floor. So that was where she was recovering and one dance. So that was the day after a nine hour surgery where she had essentially, you know, her entire abdomen cut open and yeah, it's it's crazy.

------ Getting to stay in the room - and why it's so helpful for a carepartner to be there ------ 9:11

Elsa 9:11
So luckily I was able to make friends with the person working on the hospital floor and I was able to stay there. I had my stuff in the car anyway, there's a definite benefit to the hospital and to the nursing staff and techs to have somebody there, because that way, she doesn't have to ring the bell each time for the nurse when she has to go to the bathroom, there's somebody there that can help communicate that can, keep track of what's happening because she was on painkillers and it really helps to have somebody there. I'm also highly suggesting

9:53
that if your loved one is going through a surgery to be able to physically be there for them, it is really important, I think

------ "Look over there!" how distractions can be helpful ------ 10:03

Elsa 10:03
Another note that Kristine gave me was about puzzles. it's all about distractions. And I'm going to do an episode actually with Kristine on distractions. But we did puzzles both, physical puzzles and online like word puzzles to help pass the time to help distract as kind of a meditative type of thing, both in the hospital and before and after the surgery at home. She needed to stay there a few days. The surgery was on the third. She was able to go home on the eighth and just

------ A couple of helpful items for after surgery ------ 10:43

Elsa 10:42
some, helpful hints for things at home that you can get for your loved one or help advocate for. What was really helpful for her was an abdominal binder. Because there is, this huge incision and

11:03
abdominal, which is really hard to say. Abdominal binder helped her kind of keep everything in and keep it together. and I think that helped her with pain, but also helped her, mentally feel more like things were more stable that was something we actually got at the hospital. But you can buy them online as well. Also bringing a little pillow with you so that when your loved one comes home, they can kind of protect their incision from the seatbelt. So just a small little pillow that can go between the seatbelt and the incision. Wedge pillows were really helpful. I had read about that before and we had ordered it prior because laying down flat for somebody that's had, a big surgery like that, having them be able to get up is really painful. whether you have a bed that can be adjustable with an angle or wedge pillows so it's easier to get into an out of bed, something that's really stable, like a side table or something to be able to hold on to, to be able to get up out of bed was also really helpful for her.

------ The importance of walking ------ 12:11

Elsa 12:12
walking was really important for healing. Walking is important to Kristine anyway. So not only was walking a way to get back to some kind of normalcy, it was also a way to help heal and healing is what happens at home. There was a on call doctor that had mentioned that, hospitals are good for monitoring, but home is where the healing happens because there's so many lights, there's so many beeps. But when you get home, the healing needs to start happening. And that involves moving around and keeping your loved one in a good, mental space. The way that Kristine did this was it was winter and she would take a piece of firewood and walk it into the house and and then she would walk it around the house. And then she would do that multiple times until so she was building up her strength. After you've had surgery, you can't lift very heavy things. There's a lot of things that you can't do. But this was this was something measurable that she could do, and that was helpful for her. And then puzzles. We did we did puzzles. And that really helped. Again, these are things that can be accomplished but also are distracting.

------ Getting back to normalcy ------ 13:51

Elsa 13:51
looking back at the notebook. And by January 18th she was back to remote work and January 20th back to 15,000 steps. This was a nine hour surgery on January 3rd. So not everybody needs to be like that. And yeah, but it is kind of amazing. So six weeks after the surgery, she went back to chemo with FOLFOXIRI again. The combination of five F.U and Oxaliplatin and

------ Meeting again with the liver surgeon ------ 14:30

Elsa 14:29
Irinotecan. We met again with the liver surgeon at the end of February, by that point her liver had completely grown back and had grown back way before that. When you hear the words that your loved one has a nice, healthy piece of liver. Those are things that you don't expect to ever hear or want to hear but are very helpful when they come from a liver surgeon.

14:58
So at that point, there had been a plan to do some number of chemo's and then go to colon surgery. She did have a primary colon surgery in May of 2022, so she had liver surgery then four chemo's and then her primary surgery in May.

------ Surgery is so important ------ 15:22

Elsa 15:22
the reason that I wanted to do this podcast on surgery, even though it's been a couple of years since this surgery happened, is that liver surgeries don't happen as often, I think, as they should. so part of this is continuing to advocate for getting multiple opinions, including opinions from surgeons, and also just to have a sense of what the process is like. hopefully from this experience, maybe as a care partner, you can get some ideas of what might help your loved one. There can be all different kinds of surgeries with cancer and

16:07
with colorectal cancer. Liver is definitely the most common and liver surgery changes the statistics. as a care partner, we need to help advocate for whatever gives our loved one the best chances.

Narration 16:25
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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