Care Partners Compass: Navigating CRC

Elsa 0:05
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
So I've called this episode Home is where the healthcare is sometimes.

0:58
It took us about three and a half years after my wife was diagnosed with stage four colorectal cancer that there were some services that we had no idea she had access to and they turned out to be really helpful. I wanted to go through what those services were and how they helped her out during the past year.

------ CRS/HIPEC surgery ------ 1:20

Elsa 1:21
Last summer about, gosh, I guess it was almost exactly a year ago, we knew that Kristine would need to hopefully be able to get this really big surgery called CRS-HIPEC. What that stands for is cytoreductive surgery and hyperthermic intraperitoneal chemotherapy, which is a lot of confusing words.

1:53
Basically, what that means is if you have cancer in your abdominal area that's not necessarily in an organ or maybe it's on the peritoneum, which covers your abdominal area, or if it's in the pelvic area then this is the kind of surgery that can remove all the cancer that's in the area. There's a big abdominal incision that just goes all the way down. The surgeon takes out all the cancer that's seen and they put warm chemo in for 90 minutes.

2:28
So this is a huge surgery and it takes almost everybody a while to heal, to be able to get their strength back, to be able to get their stamina back. It's a really big surgery and we knew that going in. She had the surgery in October and she had it out of state. The surgery was nine and a half hours. She was in the hospital about five days and then for about a week, we stayed within walking distance. We knew from the get-go that there was going to be a lot of healing from the surgery and that it would take a long time. There were three really helpful services that Kristine was able to access from home That were paid for by insurance. I'll go into how each of them came about and why they were so helpful.

3:26
was home nurses, specifically wound care, home PT, physical therapy, and a really great nutritionist that was at the center where she had the surgery. All of these were accessible from home.

3:43
As she was healing, I cannot stress enough how important it was that they were accessible from home. To not have to go to another appointment, to not have to get into the car, not to mention the fact that it just takes a lot of time to get stuff ready, to go to yet another appointment.

4:05
The only thing with having a home appointment is that you do have to have the house clean. So that meant that I was doing a lot of vacuuming.

------ The importance of a nutritionist ------ 4:18

Elsa 4:19
I'm going to start talking about the nutritionist first. This was something that we knew was a resource available for us, but we didn't realize how helpful that she was going to be. This was a big surgery that involved all of Kristine's digestive organs. After Kristine's first colon surgery, which was back in 2022, there wasn't much that had to be done after that in terms of eating. She was able to eat normal food right away, even in the hospital. But with this big the nutritionist was really necessary. Not just helpful, but necessary. She helped set goals for protein, timelines for introducing when she could get high fiber back into her diet, which was over a period of probably six to eight weeks.

5:22
She was really helpful because there were issues with constipation. Kristine also has type 2 diabetes, so there are blood sugar issues.

5:33
Those are all things that have to do with nutrition and diet. Not to mention the protein. We're both vegetarian and Kristine needed to be eating extra protein to be able to rebuild muscle. It's muscle that she lost from the surgery, being in the hospital, and she needed extra protein to be able to build that back up. Not to mention for wound healing.

6:07
So weekly, and sometimes even twice a week, Kristine, would be able to talk to nutritionist, figure out what the goals were for that week, talk if there were things that had to change, what was working, what wasn't. Her appetite started off not nearly as robust as it was before the surgery. that was another thing that had to be worked on, was getting her appetite back. And part of that having more calories, again, having more protein. So we'd have high high calorie snacks in each room, really, so she could have a snack whenever she wanted to. Having access to the nutritionist really helped with getting her back on her feet, literally.

7:01
One of the takeaways I got from this was how important having a nutritionist is. Somebody that can be talked to without setting an appointment a month in advance. Somebody who you can just talk to on the phone

7:20
that can help with issues that cancer patients have, particularly colorectal cancer. And that is getting the right kind of nutrition, getting making sure about weight. I mean, that did come up quite especially with the surgeries. People a lot of times lose a lot of weight. And Not enough weight is a real issue in cancer land.

7:52
I highly suggest having a nutritionist available, whether it be preparing for a big surgery,

8:00
being able to talk to one after a surgery, or even just through chemo. Because there are issues that nutritionists can help that are more specialized than what an oncologist, a primary care can help with. It's about building more of a care team. And having one that could be called from home was unbelievably helpful.

8:36
So as Kristine was beginning to start to eat normal,

8:44
It was time to go back to chemo. But her oncologist was worried about her incision, that it hadn't fully healed yet.

------ Home wound care nurse ------ 8:54

Elsa 8:54
Her oncologist didn't feel comfortable having her start chemo until her wound was starting to heal. Because most of the incision, it was really big. It is a really big incision. But some of it wasn't healing. And that concerned him. He knew that the chemo would slow that down. So he put in an order for home wound care. And the wound care clinic that's associated with the hospital.

9:28
We did the wound clinic first. An that was an experience.

9:39
Not only would I have not wanted to go there three times a week,

9:48
have, they couldn't actually even help Kristine.

9:53
So luckily, the oncologist had also put in an order for a home wound care nurse.

10:01
And thank goodness that he did that.

10:07
So with home care, the first thing that they do is they come out and they assess what the patient needs. They looked at Kristine's wound. They determined that, yes, this is something that could be packed. And packed is a word that I now am extremely familiar with what it means and what it is.

10:30
Basically, they wanted to not have the wound closed before it closed on its own. So they didn't want the surface to close before it was healed underneath.

10:44
they thought, unlike the clinic, that something could be done about this.

10:50
So three times a week, we had a nurse come to the house she would take Kristine's vitals. She went through all of the medicines that Kristine was on. Each time she would go over a different one, which was really helpful. See if there's interactions. Check the wound. Once a week, the wound was measured between another hospital's wound care clinic that Kristine ended up going to maybe five or six times. Between every week and three weeks, they would kind of come up with the plan of what to pack and how to pack. And the home care nurse would do the packing until it was time for me to start doing the packing also. I'm a very squeamish person This was not in my wheelhouse. This was not anything I thought I could ever do. But I leveled up when I do. her wound started to heal. from the inside out, which is exactly how it should have. It took a while. It did take a while. I was doing a lot of vacuuming, let's say, but her wound has been healed now for a couple months

12:13
that made a huge difference. even while she was doing chemo, another chemo got added, that makes it even harder to have wounds heal, but it healed.

------ Home physical therapy ------ 12:27

Elsa 12:27
The last home service that I want to talk about that was really helpful was physical therapy, PT.

12:37
After Kristine's surgery, when we came back home, it was really difficult for her to walk. And this is somebody that does, you know, 10 to 15,000 steps almost every day. Somebody who dances a lot, somebody moves a lot,who does exercise classes. And between her back pain and her hip pain, it was really hurting her. And as a care partner, I don't think I fully comprehended how much it was hurting.

13:13
So when the home care service came out to assess both what Kristine needed and also what our insurance covered, we found out that she could get home PT. And that helped a lot. The physical therapist worked with Kristine to determine what she could do, what she wanted to kind of work on,

13:45
fitness, what she wanted to do.

13:49
So she knows a lot about yoga. She's done lots of yoga online classes and in person. And he was able to kind of talk to her through that yoga language about getting different stretches that let her walk again. We would, this was, this was during, there were a lot of winter storms this, this past winter. And we would walk around the neighborhood, gettin the snow boots on, whatever was needed and this was part of her healing process was to get out there and move. And the physical therapist is what really helped that to happen.

14:43
From surgeries with other cancers, physical therapy is an automatic part of the care team, but in colorectal cancer, it's not, at least not what I've seen.

------ The importance of building your care team ------ 14:56

Elsa 14:57
So the reason that I wanted to make sure that I talked about this stuff is to see what you have available. Just because somebody hasn't mentioned it doesn't mean it's not possible.

15:12
These are helpful services, whether you're getting ready for surgery, having had surgery, or just having problems with being on chemo or on treatment, or maybe it's all done. uh, you're a lower stage cancer, and you're having problems moving.

15:35
These services exist,

15:39
and hopefully it's something that can be covered by your insurance.

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

15:54
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16:07
The transcript of Care Partners Compass: Navigating CRC and additional links can be found on our website

16:19
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