S1Ep2 Chemo and CRC

I had Kristine listen to it because she has final editing rights and she said that I was being very informational but slow and boring, and that it wasn't, from my perspective. that's humbling. So I'm doing it again I think each each person is different and they're going to handle the chemo part of the cancer journey differently.

This is what a typical chemo infusion day would look like. We would wake up early because bloodwork would start at about seven, 730. I would make breakfast or help with breakfast. If she wanted to cook, I would get the cold bags ready with all the icing supplies, when When she was on the triplet chemo, which is for FOLFOXIRI, She needed to have icing supplies that made it less likely for her to be sensitive to the cold. And also they found out through studies that there's a chance

that it lessens the possibility of getting neuropathy. So she would have these icy gloves and icy slippers and multiple pairs of them. We'd get the supplies packed up, get some some snacks and then in the car we'd always listen to a very silly podcast. This was a way to kind of keep of humor while, you know, undergoing something that nobody wants to do. Part of the day of the chemo infusion would be focusing on the routine because that routine made things, I

think, a little less scary. She would get her bloodwork done and then we'd have 3 hours to walk around That was part of the chemo experience, was to eat breakfast at home and then walk around and get a second breakfast. Some people fast for chemo, and Kristine did the exact opposite. Part of it was really helpful because she needed to gain weight she needed additional calories and and protein. And that worked for her. we'd walk all around, do some sightseeing, some shopping,

While we were out, the oncology nurse would call. There's two things that need to happen for the chemo infusion to be a go, and that is that the blood work numbers are okay and the oncology nurse has basically a checklist to make sure both about what side effects the patient is experiencing and also that that there's not a safety risk in giving the chemo. And that information gets passed on to the oncologist. The day then would be bloodwork, three hour gap infusion for five 6 hours.

During chemo, she would make sure that we did some

dancing. again, this is not something that you're going to hear from most people during their chemo experience. But that was really important to her. So the reason for the dancing was was kind of twofold. On was that she wanted to make sure that even on the infusion days, she was getting her 15,000 steps. So our walk in the morning would usually be about 10,000 steps. And then there'd be usually, you know, 5000 dancing steps.

Because the dancing happened after the Oxaliplatin infusion, where she had the icing supplies on, it would let her warm up. I needed to make sure that during the Oxaliplatin infusion that she had her icing supplies going. as a care partner, that made me feel like I was doing something. And that was, I think, really helpful. And it also made the time go in the infusion chair a lot quicker because Oxaliplatin was a two hour infusion and I would need to just make sure that

everything was still cold, switch them out when needed. The very first time that Kristine iced for Oxaliplatin, she was too regimented in her approach and ended up getting a little bit of frostbite. So a hot tip, a cold tip is to make sure that your loved ones take their hands out of the icing supplies, you know, every 15 minutes or so to make sure that that doesn't happen. I was privileged enough to be able to have enough sick time to take off. Her infusion days were Thursdays, so I would

take off work Thursdays and Fridays. And that way I could be there during her chemo infusion and I could be there while she still had her 5FU pack on if you're new to CRC then 5FU is one of the chemo drugs you basically have to wear it for 46 hours. it doesn't get infused so much during the infusion, but your loved one will have it in like a fanny pack for 46 hours after the infusion. So that means that they come home with

the 5FU. Some people with cancer may not want their care partner to go with them to chemo or they may not want them to stay home with them the next day. That was something that worked for us. So everything that I did as a care partner was, you know, checking with Kristine first and making sure that that was what she wanted. Kristine would have her 5FU pack and I would drive home. The irinotecan which was the last chemo drug to be infused, would

make her eyes really sensitive to light.So she would put on her sunglasses. I would drive home For probably about a year. Our friend Jill would come over every other Thursday. every chemo day, she would either pick up dinner, make dinner, and we'd eat together. And then after dinner Kristine would always have just a little bit of ice cream. That was for a couple of reasons. One, because she deserved it and another because it was a way to make sure that she didn't have cold sensitivity.

Cancer has a way of making you feel very isolated. And especially when you couple that with COVID. It felt like we had an extra layer of support, which was such a nice feeling.

The 5FU would run for 46 hours two after the 5FU was done the first couple of times a home nurse would come and remove the needle from Kristine's port. Take the the empty chemo pack basically off. After those first few times I had to do that. the end to the chemo infusion was d accessing her port removing the needle from her port and, you know, properly disposing of everything just like there was a routine about everything else. About

chemo. There was a routine about stopping chemo. We would watch the video about how to de-access the port. I would lay everything out on the table. And there was a set of steps that would happen to make it end. As a care partner. That part was, you know, always stressful. The first time I had to do that on my own.I was really scared. I was scared that I was going to hurt her as scared I was going to mess up.

But it was fine. The second time I got, I think, a little too confident and I ended up hurting her, taking the the needle out when we went to her next infusion,I asked if I could practice. I remember they gave me a glovebox and a needle and I was able to to practice taking it out multiple times. So that way it made me feel like I could do better because I hated that, you know, I was trying to help. And then I hurt her. I had a little mantra about how to remove the needle, which now I can't even

remember. it was something that we would say together, and it made the process. less stressful, both of us were so happy when that needle was out.

So with chemo, there is what's called neoadjuvant chemo. neoadjuvant means that you get chemo before the surgery, and adjuvant means that you get chemo after the surgery. So in Kristine's case, when we first talked with the oncologist, you know, the hope was that the chemo would be effective and that she could get to surgery. She would then also need chemo after surgery and would probably need two surgeries, one for her liver and lymph and another for her colon and lymph. that was so

that was the initial plan. Typically with the first line chemo's and depending on the person, the first line could be FOLFOX. It could be FOLFIRI, it could be FOLFOXIRI. There might be other things added on like Avastin or Vectibix. So in her case, it was FOLFOXIRI, which is 5FU. Plus Oxaliplatin plus Irinotecan plus Avastin. So it was kind of almost everything all put together a very aggressive chemo regimen.

the initial thought was 12 rounds of FOLFOXIRI checking, know, somewhere in between to see how things were doing, because that's the thing with cancer you will never know enough about what is happening with the cancer So there's CEA, which is a tumor marker. There is, circulating tumor DNA testing that ctdna that looks for tumor cells that are in the blood. And they base that on an initial tumor sample and then there are scans. scans are typically every 2 to 3 months.

CEA is typically, you know, might be every two weeks, it might be every four weeks. circulating tumor DNA. ctDNA can be, you know, anywhere from every four weeks to every three months. As Kristine was doing chemo, we had very little idea of what was happening. the ways that we knew that something was working was that after she started chemo, she couldn't feel

that bump on her stomach anymore. S became more hungry. And the oncologist thought that because her liver tumor was so big, it was probably squishing her stomach and made her stomach smaller. So as the liver tumor was shrinking because of the chemo, it allowed her stomach to be able to expand. We were getting CEA numbers, which started off really high, 5500, and that, you know, went down So CEA should be three or less. the CTDNA she had that started before chemo and that started at

like over 10,000, which should be zero. So these numbers are going down. She can no longer feel the tumor through her skin The scan is really the best way to know what's happening. And that's what she needed for the surgeons to decide to take her case So she had been diagnosed in July. She started chemo in August, November. Her was when she had, I believe, her first scan and that it was good. They were definitely seeing that

everything was getting smaller, which was excellent. That is when we started to talk to the surgeons.

So we were incredibly fortunate to be at a cancer center where surgeons were involved from the get go. They were part of the team. We didn't talk to them before that, but her oncologist was. So I'm just going to say here and I say this a lot throughout this podcast. It It was only when I started to get involved with online CRC communities that I started to realize how fortunate we were that surgeons were interested in

her case, even though it was super complicated. getting second opinions and third opinions and fourth opinions is so important. Getting to talk to a surgeon, not just an oncologist, but a surgeon is crucial, particularly if your loved one has liver mets or peritoneal mets, to be able to talk to a surgeon can really make the difference. So I'm trying to remember back to the first day of chemo I'll

keep it short because my memory is really bad. I knew so little about physically,where we were going, what the experience was going to be like and started off scared, really scared for her feeling really helpless.

Kristine was very lucky because even though she had all these chemos put together, she had very few side effects. The main side effect while she was getting the chemo was fatigue. And then a longer term side effect was like a chemo brain fog. Some people have a lot more side effects. They have GI issues, they have nausea, diarrhea. Hair loss. There can be really a lot of different side effects. you know, the thing of being a care partner is you can try to provide, you know,

everything. But I have found that doesn't mean that you don't feel helpless. you can do is support your loved one in every way that you can. And when you're going into something completely unknown, like chemo for the first time, because I hadn't gotten into any online communities early. And I think in one way that was better because I didn't have any expectations. I was just there to make sure that whatever I

could provide for Kristine, that I would. really all about just doing anything that you can to make them feel comfortable, to make sure that they know that you're there for them. That's what being a care partner is about.