Colorectal (Colon) Cancer Videos - Carol H



Watch as Carol H takes us through her journey with Colorectal Cancer.

Do you have experience with colorectal (colon) cancer? Join now to share your journey!

Video Transcription

Diagnosis

My diagnosis was colorectal cancer stage three. I wasn't sure what the node involvement was because no one ever thought I had colorectal cancer. When I had the tumor removed, that's when they found the cancer. Before that, they just thought I had a tumor and it wasn't cancerous. So because I had the surgery a little bit backwards, I never knew what my node involvement was.

Coping with Change

Change is tough and I think any type of change, it's a loss. I had to change a lot of things about my life as much as I fought through it. I did work through the entire time I had chemotherapy and all my surgery, but a lot of things have changed. I get tired much more quickly than I used to. I'm not able to do as many things as I used to. I can't eat everything that I used to. So in order for me to adopt a change, I just decided that this is the new me. I'm happy to be alive. I'm happy to be healthy and if I can't do exactly that I did before, I can at least be happy that I'm alive and push forward.

Financial and Out of Pocket Costs

Cancer can have a really, really devastating financial impact on a lot of people. I was very fortunate that I had great insurance. I had an HMO plan so I was limited to what providers I could see. But because I had an HMO plan, I had a very low deductible and all of the cancer treatments that I decided to have were all covered with my insurance. It's really tough because there are a lot of options now for your cancer treatments. For example, I opted to have traditional chemotherapy where you can also receive your chemotherapy by a pill. But if I had received the pill, I would have had to pay high co-pay for the prescription every month, as opposed to just receiving the pump and having it for free. I think it's really important that you understand your benefits. Cancer can be very emotional. You want to have the best care that you can possibly have and some people, they feel like they need to just go to the best place and that place may be out of network and that's going to end up costing you a lot of money. So the most important thing you can remember, is try to stay within your network. Cancer treatments across the country are standardized now. It's not one person is doing something better than the other. So if you can stay within your plan or your network, you're going to be much better off and less likely to have a huge financial impact. If you don't have insurance, it's really important to talk to a social worker right away because there's lots of government support and support through the hospital in order for you to be able to get the care that you need.

Fear of Cancer

Wow, fear of cancer is tough. I still fear of cancer. I know that I'm at a high-risk to develop metastasis to my lung and my liver and I have to try to keep in perspective I'm alive and I made it through my initial cancer treatment. If I made it through that, I can make it through the next. You never know when cancer's going to come upon you. I lived a very healthy life. I exercised, didn't smoke, drank a little bit, but nothing that would cause cancer, ate a great diet and I still ended up with cancer. But I think the most important thing to remember is that there's so much technology and so much research that has been done, that cancer isn't necessarily a death sentence anymore. People are living with cancer and people are surviving cancer and if you just keep that in perspective and remember that, I think you can do it too.

Gifts for Cancer Patients

I think appropriate gifts for people with cancer are the little things. I was very independent prior to being diagnoses and the things that I needed the most help with were just doing chores like laundry, or dusting my apartment, or cleaning my apartment, or going food shopping. I have a really good friend who arranged all of my other friends to take care of me. So every other week and the week that I had my chemo, a friend would email me or call me and just ask, "What could they bring me, what can they do for me?" and I had people bring me fresh flowers, go food shopping for me, one friend made a CD with inspirational music that I would bring to chemotherapy treatment. It was those little things to take care of those little details. Because there were quite a few weeks when I would work, come home and nap. My nap would go into bedtime. I'd get up the next morning; go to work and I would just repeat that cycle. So the best gifts were gifts that just take care of me. didn't need fancy flowers, or lots of food, or pajamas or anything like that. I just needed someone to help me take care of my everyday needs and that was the biggest helper that I could get.

Life Before Cancer

Before I experienced my first colorectal symptoms, I was a picture of perfect health. I was very active at exercising at least seven times a week and I also ate a high-fiber, low-fat diet.

Lost Options

There are lots of things when I was being treated for colorectal cancer that I wasn't able to do. I'm a huge swimmer, but when I had to wear the pump for six weeks, I couldn't go in the pool and swim and then even when I was recovering and going through chemo and I didn't have the pump on all the time, I got very short of breath and I wasn't really able to exercise at all. Those are about the only things I wasn't able to do, is do a lot of hard-core deep exercise. I managed to go ice-skating every once in a while. I managed to go for walks and I think the cold was also a big restriction for me. But I just kept remembering, you're going to get better and you're going to be able to get back to the things that you used to do and sure enough, I am.

Lowest Point

I think the lowest part of my cancer journey was just being so tired all the time and not being able to take care of myself. When I say, take care of myself, I mean, clean my apartment, go food shopping, do all the things that I normally did. It was tough to learn to let people help me and to ask for help. But I think as I noticed that it made people happy to be able to help me, that it made it tolerable to ask for help because people are happy to help me. People wanted to do things for me and I just had to learn to let them help me and I think the other thing is, I had to learn to embrace naps. When I first started napping all the time, I was so hard on myself, "Why are you napping? You shouldn't be napping." But as soon as I learned to embrace the nap, I rested better. I felt better after napping and I think it helped me get through what I needed to.

Metastases

I had a tumor inside my rectum. It was about four centimeters away from my anal sphincter and it was about three centimeters round. It was removed in late July and then I started all my care for cancer.

Perspective on Life

Cancer can have a huge impact on your life. For me, it's changed the way I think about things. I always used to dream about doing things and now those dreams are much more important. I don't put those things off for, "oh, someday I'll do this," or "someday I'll do that." I have a dream, I'm going to go for it. I also have become much, much more patient. Things don't bother me as much as they used to. I kind of let them roll, or as I learned, "I ride the wave."

Place of Care

I received all my cancer care at UPMC Passavant. It was the best place I could ever receive care. When I had to go for my daily radiation treatments, the team had on my favorite music, Jimmy Buffet. The cancer center was amazing and the best part was that my surgeon and my oncologist were right on the same floor so I knew that they were talking to each other all the time. I had a chemo nurse. Her name was Nurse Judy. She was the best person to ever have. She was my cheerleader and just a great down-to-earth person and everyone in the cancer center knew her and don't touch her patients because she wanted to take good care of them. I still keep in touch with Nurse Judy because she was amazing. When I had my surgery, I had a beautiful private room and the nurses were fantastic. I would do loops around the floor trying to walk and the nurses would all say "hello" and cheer me on. I'm really, really happy I went to UPMC Passavant.

Questions for Doctor

There are lots of questions that you should ask your doctor when you're diagnosed with colorectal cancer. Before you even get to asking the questions, the most important thing to do is to write down your questions before you get to the doctor's office. A lot of people get intimidated by the doctors or the doctors may make you feel like you're rushed. So if you have the list of questions in front of you, you'll be sure to get through them. The second thing is, if you can, being somebody with you to be a second set of ears. Sometimes you're so focused on asking questions, you don't necessarily listen to the answer, or you may have heard something a little bit different than someone else who's a little less emotionally connected to the diagnosis, and then you can get a really solid answer. So some of the most important questions to ask are, what are my limitations going to be? Am I going to be able to work? Am I going to be able to take care of myself? What are the common side effects I'm going to have and then, what are the treatments for the side effects? For example, if I was getting a lot of diarrhea, so what were they going to be able to do for me, not just to stop the diarrhea, but to treat the sore butt too, and then, what is the long-term prognosis and what is my long-term picture? Yeah, it's one thing to get through with chemo, but then what is going to happen afterwards? What is the follow-up care? Those are all really, really important questions.

Quotes

During my journey for cancer treatment, there was one slogan that I had and that was, "just ride the wave." When I was first meeting with my colorectal surgeon, he met with me and he knew that I was really upset and he came real close to me and he said to me, "Carol, you just need to ride the wave." At that moment, I didn't know if I wanted to cry or kick him in the shins. I'm very scheduled, very detail-oriented person and to be told to "just ride the wave" was just really hard for me to hear. But I'm really glad he gave me that advice because when my schedule got messed up, or I didn't get my chemo on time, or my surgery was delayed a week, or I didn't recover as quickly as I wanted to, I remembered, "just ride the wave," and it really made the whole experience much more manageable.

State of Condition

My colorectal cancer is in remission right now. When I had my surgery to have my initial ileostomy and J-pouch done, all the pathology results came back negative. So everyone asked me, "Why are you having the second round of chemo, the FOLFOX, which is the worst chemo you can have for colorectal cancer?" and I kindly named it the "keep-away" or "and stay away" chemo. I wanted to make sure that all the cancer cells were out of my body so I went forward and had the chemotherapy before I had the reversal of my ileostomy. So I consider myself in remission. I have lots of follow-up care. I have to have a colonoscopy every six months for the next three times and then it goes annual and lots of CAT scans as well. But that's just to keep me in check to make sure that it doesn't come back.

Side Effects

My colorectal cancer treatment consisted of receiving a six-week continuous infusion of 5-FU. I wore around a little cassette with a pump and I received daily radiation treatments. Once that was completed, I had about a six-to-eight week break and I really needed it because the radiation caused a lot of diarrhea and burning. I had an ileostomy placed with a J-pouch. The reason I had a J-pouch was because they needed to remove my rectum and descending colon. After I recovered from the ileostomy I went about having FOLFOX, which is the common cancer treatment for colorectal cancer. I had a lot of side effects with the FOLFOX including hypersensitivity to cold things. I couldn't drink anything cold or be exposed to the cold at all. It was the worst experience ever. I felt like I was swallowing glass. I completed all of my chemotherapy treatments within a timely manner. The biggest side effect that I had during my treatments was that my platelets dropped. So right before my last treatment, I actually got a bloody nose that couldn't be controlled and I had to go to the ER. They packed my nose and my platelets were really low and I had to wait an extra week before I could finish chemo. I then had the reversal ileostomy and I had to learn to deal with my new plumbing inside so I went through a time of having a lot of diarrhea. But since then, I've been doing really great. The long-time side effect is that my feet are numb. They feel like I have sand in my shoes all the time. They tell me it's going to go away in about 18-months. We'll see. I still feel everyday my feet are numb.

Symptoms

My doctors never thought I had colorectal cancer. I always complained of an upset stomach and I either had diarrhea or constipation. I had every single test you could possibly have and no one could figure out what was wrong. So my physician finally told me I need to have a colonoscopy. I put it off for a while, but I finally had it and that's when they found the colorectal cancer.

Treatment Decisions

Once I found out I had cancer I just wanted to find out what I needed to do to be done with this. I had no time in my life to have cancer. My doctor told me it would be about a year-long process of radiation and chemo, surgery, more chemo, more surgery and then I would be cured.

WhatNext

WhatNext is a fantastic website. I had just happened upon it. I was on the American Cancer Society looking for information about FOLFOX and what the side effects were going to be for that chemo agent and I happened to see, "Chat with people who have been through what you have," and when you have cancer, there are lots of people that want to be supportive to you. But until you start talking to people who have really been there and done that, the rest of your friends, they just don't understand. WhatNext enabled me to connect with people who are going through the exact same thing I am. So I was able to connect with people who are just a couple weeks ahead of me in the treatment. So they were explaining to me what was going to happen before it happened. They could do it better than my physician or my nurses and then I was happy to give the support back to people who were just behind me, cheering them on because I had people in front of me cheering me on. It's a fantastic website. I can ask any question. No matter how minute the detail is, there's always somebody there's going to answer it.

Patient Doctor Relationship

I was very fortunate with my oncologist. I don't know if it was because of my age, I'm really young to have colorectal cancer, or what it was, but I had a very special connection with my oncologist. He would come and see me and talk to me like a real person. He made me feel very comfortable with the treatment I was receiving at UPMC Passavant. I could have went to one of the major cancer centers in the area, but I opted to go to a local community hospital and even though I was receiving care at the community hospital, I knew that I was getting the same care that I would if I went to one of the larger cancer centers. He took time to answer all of my questions. His nurses were fantastic. I never hesitated to call and he really cheered me on throughout the process. He was also very concerned about all of my side effects and really wanted me to call him anytime one of the side effects was bothering me. I'm really glad that I had my oncologist that I had.