Treatment Decisions- Colorectal Cancer – Jayme W



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Video Transcription

After being diagnosed, I had to make some treatment decisions and ask myself, “What next?”. I decided to go with radiation treatment, chemotherapy treatment and surgery. I had about five weeks of radiation treatments. I went five days a week before school, and I had chemotherapy after school one day a week. And I went in and had IV treatments. Lasted anywhere from two to four hours depending on how much I was getting that week. I took Xeloda, an oral chemotherapy treatment. I had the 5-FU. I took the pills five days a week, and then I had the IV treatment one day a week. Eventually, after surgery, I had a IV treatment one day a week, and then I had a pump that I wore for three days after my doctor’s appointment in the office. I kept it on for three days, and then I got to take it back. And that was always a happy day when I got to get rid of it. I ended up having an ileostomy after my surgery. I had that done in July. So I had a little bit of time to get used to it before I had to go back to work, and that was nice. I didn’t ever get used to it. It was awful for me to try to deal with. I never got used to the ileostomy. I didn’t ever really figure out how to work the whole thing. I had a lot of difficulty keeping it attached. I don’t know. Probably was partially due to the fact that, the size of my body, I had lost a lot of weight. And I have a pretty tiny frame as well. My ostomy nurse and I finally decided to go with child-size products, which was great. After we switched to the child-size products, I had a lot more success, but I had a lot of explosions. I ruined a lot of bedsheets. I ruined a lot of clothes. I went through a lot of gloves. I went through a lot of bags. I went through a lot of tape. I went through a lot of everything. And I went through a lot of towels and washcloths as well. I’m pretty sure that my cats thought that I lived in the bathroom at that point because they were always banging on the door trying to get in, ‘Hey, what are you doing in there?’ But I spent a lot of time in the bathroom cleaning up messes and changing bags. And it seemed like as soon as I would get one on, boom, there it would go and I’d have to change it all again. I participated in a research project through the Dayton Oncology Clinical Research Program. The people that followed up with me there, they were great. I would totally recommend doing a research program if you’re able to. I felt like having an extra set of eyes keeping track of what was going on with me was an amazing feeling, to know that not only were my doctors and nurses and caregivers taking care of me, that I had this other whole entity and they were looking out for me, too. That was pretty comforting to know from time to time. And also, I think for me, I thought that a research program was a good fit. Because as an educator you’re always encouraging your students to do research and figure out the best new thing and do the best they can. And, for me, I felt like if I could help somebody do this research and if I could help somebody find a treatment that would help other people, then that’s definitely something that I really needed to do to give back. And I wanted my students to know that I’m participating in this and I’m doing this and I want you guys to be involved as much as possible. So the research program kind of provided me a way to do that and try new treatments and be able to hopefully say down the line that maybe somebody’s having a great success or a good treatment or a positive outcome because I participated in this program. It’s definitely something that I think is important for me to do to give back. The nurse navigator was great. She was really helpful in making sure that everything was lined up, my appointments, everything worked around my schedule. My doctors’ offices were always, always working with me to make sure that I could have my appointments before school or after school so I didn’t have to miss work. And, people scheduling my appointments and taking care of all that stuff and dealing with insurance and dealing with all the other stuff that goes on that really I didn’t want to have to think about, that was great. That was fantastic to have those people who were able to do that for me, and I’m so thankful that they were there. One of the most helpful things that I’ve had happen while I was at the hospital was, the ostomy nurse and I, while we were trying to figure out what was going on, while we were trying to figure out that I needed child-size products, while we were trying to figure out the best way to teach me how to work this ostomy thing, was a housekeeper from the floor I was on was going through the same thing with her father at home. They were dealing with the ostomy issues. They were dealing with all those new questions and things going on. And she came to my room on one of her breaks, and she talked to me about the things that they were trying and the things that they were doing at their house. And her advice to me was so much more real. They were going through it. It was real. It was so helpful to me. And it was the thing that I was able to take out, and it was the thing that I used the most in dealing with my ostomy issues. So having somebody who’s going through it, who’s been through it, was so much more helpful than a clinical nurse who is very, very important in your treatment, who knows all the ins and outs, who knows the textbook way to do things but has never had to deal with it themselves. And it’s a totally different thing when you’re talking to someone who’s had to deal with it themselves. And that, for me, was the most important part of my ostomy treatment. After I had surgery, I had chemo treatments about once a week for a while. And then it went on to every other week. And then it got to be dependent on my levels and my counts. But that was when I had the pump was after my surgery. It tapered to every other week, and then even longer as my counts went down. The longer I went the more weight I lost, and the more weight I lost the more often I would have to have blood draws and counts and the less often I had treatment. And then I eventually had to come to a place where the doctor and I had to sit down and decide whether or not treatment was something we needed to continue. My treatment plan was for me to keep going. That was what the doctor determined was the best treatment for me. That was the plan. But I had to make a decision, because I was losing so much weight. And I needed to go in and talk to the doctor and have a really, really serious heart to heart. And we both determined that the best course of action for me was to stop treatment. Luckily that worked out well for me. I was able to stop treatment. And now I’m three years out, and I’m still clean. But it was a really tough decision. When the doctor says that you need x amount of treatments and this is the best way to make sure that it doesn’t come back, and you have to look at it halfway through and go “I just can’t do this anymore”, it’s a tough decision. And it’s one you need to really make seriously and make with your doctor and make sure that you weigh all the options.