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Game On! A Mother's Fight Against Colon Cancer

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Game On! A Mother's Fight Against Colon Cancer

Mar 16, 2016
Carri Lyons was only 39 years old when she was diagnosed with colorectal cancer. And that wasn’t even her first cancer diagnosis. This is Carri's story about clashing with cancer twice and how her “game on” approach has kept her going. She also talks about how she made the treatment decision she did, her advice for others diagnosed with the disease, and the importance of really knowing yourself in order to ask for the support you need.

Episode Transcript

Announcer: We're your daily your dose of science, conversation, medicine. This is The Scope, University of Utah Health Sciences Radio.

Interviewer: Carri is a marathon runner, a long-distance cyclist, a wife, a mother, an author of "Along Came Hope," it's a book about the death of her baby, clashing twice with cancer, and adopting her daughter. Carri, today we want you to share your story as a way of learning more about colorectal cancer and to give somebody that's in a similar situation a better idea of the journey ahead, from diagnosis to treatment and how you got through it. First of all, my first question is you're under 50. You're pretty young.

Carri: Yes, I'm only 41.

Interviewer: When people start getting their first colonoscopy, they're 50.

Carri: Yes.

Interviewer: So how did you even find out? Take me to that moment when you found out that you had a colorectal cancer diagnosis.

Carri: In 2009, I was diagnosed with endometrial cancer, cancer of the uterus. And through genetic testing and genetic counselors where I was treated, they said, "With your cancer right now, endometrial cancer, there are similarities between that and someone that might be diagnosed with colon cancer. From here on out, we want you to be tested, have a colonoscopy yearly because we just want to be cautious." I was like, "That's not going to happen to me. I'm 34, but whatever, I'll do the colonoscopies.

So I recovered from my endometrial cancer and then, a year later, they said, "Just to be careful, we're going to do mammograms as well." So I'm 34. A year later, I'm going to do the mammogram, I'm going to do the colonoscopy. There were a lot of things that were going on our lives. So by the time the third one was going to come up, I was like, "No. I'm not doing it." And so I just kept putting it off and putting it off.

So I put it off 2 1/2 years later. So in that 2 1/2 year mark, that's when I went in and I was like, "I better get it done. Fine. Okay." So I go in and I do it and, Okay. We found a polyp." Okay. That's fine. And I've had the same line of doctors and they knew my previous history and so I was at home with my two-year-old and she had the constant cough and we were getting ready to go the doctor. And she's running around and I'm like, "Let's go see [Dr. I]. Let's go see. He wants to hear your cough. Blah, blah, let's go." My phone rings and it's my doctor. My doctor and it's the surgeon. And surgeons never call you.

Interviewer: Yeah, I've heard when the nurse calls, probably okay. When the doctor calls, there's probably a problem.

Carri: Right. And then you answer the phone and he's like, "Hi, this is Dr. so and so." And I'm like, "Ugh." So in the meantime, I'm trying to get my two-year-old dressed, who's like wrestling an alligator and trying to get out the door to go see her doctor for a cough. And he's like, "The test results came from the polyp we removed and there are cancer cells, blah, blah, blah."

I say, "Blah, blah, blah," like I don't want to talk about it, but what really happens is when you hear those words, "These cancer cells turned into cancer. It's positive," it's like tunnel vision. Everything just kind of goes silent. But when you have a two-year-old, you don't have time to kind of let it sink in. I'm like, "We've got to go."

Interviewer: Yeah. It was just such a clash of two different things.

Carri: Yeah. And our daughter was very new to us as well. She was adopted and she had not even been home with us for a year. It was just a lot of different things going on within that moment. And I'm at her doctor's and I'm just sitting there like, "Ugh, I've got to through this again." It was stage one, which is very good. That means it didn't spread but they test lymph nodes and that is very common with all cancers and the lymph nodes were like glands. And I'm not a doctor at all so I'm like, "What are lymph nodes again? What did they do?"

Interviewer: That health class in grade school is a long time ago. Remind me.

Carri: So I'm giggling. I'm like, "What do lymph nodes do again?" Basically, that if the cancer cells or the cancer goes into those lymph nodes, that's bad. We don't want that to go in there, but they can't test the lymph nodes until they do surgery, until they remove the cancer in the area that it surrounds. And that's very typical of cancers. Basically, I wasn't like, "Well, let's just do another biopsy." It was kind of like, "Let's be preventative and let's talk about your options."

So the options are, "Let's remove your whole colon, let's look at your quality of life, or let's remove the part of the colon that we found the cancer so your quality of life can somewhat remain the same. But we won't know until we do the surgery and then when we do the surgery, we'll test the lymph nodes and that's we'll find out if it's spread."

Interviewer: So the decision of just trying to get the part where they believe the cancer is, the risk of that is that they might not get all cancer, is that right?

Carri: Right. So that's the . . .

Interviewer: That's the downside, but the upside is if they do get all the cancer, much better quality of life. They remove the whole colon, then you like to do a lot of endurance stuff, cycling, running, long hikes you wouldn't be able to do that because you have to go to the bathroom a lot.

Carri: Exactly and so . . .

Interviewer: Or the bag?

Carri: Sometimes what they do is when you go in for that surgery to remove the whole colon, they'll go ahead and they'll remove it and then they attach it to . . . this is very wrong, probably, but they kind of attach it to the rectum area. But they can't do it in one surgery so they do the surgery where they remove all of it and they gave you a bag and then they like you heal and then, once everything is good and it looks like it's going to repair, then they're going to go ahead and do another surgery where they're going to basically tie up where that colon was left off to basically your rectum and put it together.

So I would have a bag, but only temporarily. Some people, there could be an issue with the surgery and sometimes people end up with a bag for life because the surgery didn't go well. And it's really hard to determine what's going to happen.

Interviewer: How did you make that decision? How did you decide, "Let's just do part of it"?

Carri: Because I'm young and my quality of life my husband and I are very active and it's like, "What do you want to do?" But it's funny because right now, here today, I had my colonoscopy done last week and they found another polyp.

Interviewer: They did?

Carri: So basically, that's what they said what's going to happen. It's common for you to get polyps. And I'm still waiting for that polyp result to come back. Is it cancer, is it not? And I don't know.

Interviewer: How do you get through it?

Carri: I wrote a book. The book is called, "Along Came Hope," and in that dedication I put, "All it takes is just getting up and putting one foot in front of the other." And you can mean the smallest sense or you can put that in the largest sense. And sometimes, putting one foot in front of the other is just getting out of bed and putting your foot down on the floor and just saying, "Game on. Let's start the day." Your day could be like, "It's so hard and all I need to do is go to work today," and that could be your game on. I mean, sometimes, yeah, you want to go to sleep. When we lost our baby halfway into our pregnancy, it was either . . . I wanted to hibernate. I understood suicide. I really understood it, but that was my thing. Go to work.

Interviewer: That was your "do something" at least.

Carri: Yeah. Do something or just show up and game on because the opposite of that is go to sleep. And either go to sleep forever or go to sleep for three weeks or whatever. And I just couldn't do that. I had a husband and I couldn't let my family down. I couldn't let my mom down, my siblings down and my dad down. I couldn't do it and that just kind of kept me going.

Interviewer: In terms of support, you have done a lot of this on your own, but you've also had some great support. What did you need in terms of support and did you have to ask for that or were people pretty intuitive to give that to you?

Carri: Well, because I've been through my own challenges through various things, obviously, but losing the baby and then endometrial cancer and then having colon cancer, so my support system has always been my family, my husband, my dear friends, everyone has. But at first, when I was first diagnosed with this in 2009, I was like, "Facebook." I'm just reaching out because I can't hold things in. I know a lot of people just want to isolate themselves and not do that, but that's not me

But now, here I am today, waiting for a possible third cancer diagnosis. I just don't want to . . . here I am on the radio and I'm saying I don't want to to tell anybody about it, but I just want to keep it in and I think that people have to understand what it is, how they need help and own it. And just say, "I'm owning it and I need to isolate myself and I'll be fine. If you give me that, I'll show up in a week." Or, "I need to remove myself from social media," and just saying, "I'm not checking social media. I just need to be by myself." Or just saying, "I do need to talk about this and let me talk. I don't want to hear you talk. I'm going to talk about this."

Interviewer: So that would be a big piece for somebody else that's struggling, "Oh, what do I say?? Maybe just don't say, "How are you?"

Carri: Just ask them in a curious way. Not like in a judgmental way, but in a curious way. So how does that feel? What are your next steps? So tell me about lymph nodes. I don't even know what they are." So people that are listening and have a friend, a family member that are going through it, ask them in a curious sense and let them talk about it and just say, "How are you dealing with it? Are you okay with it? What can I do?" Meaning that in a very honest, genuine sense and acknowledging their grief, whatever it is.

Interviewer: Did you find any tools or resources that were useful that you would recommend to somebody else who's going through the same journey?

Carri: Like I said before when I said to stay off of social media and the Internet and don't self-diagnose yourself, that was me. For me, what was helpful was feeling it emotionally. Some people are logical and they want that information.

Interviewer: I think I would want to learn as much as I could about it.

Carri: They want to do that. And so if you're a technical person, you're a logical person and you want that, go online. Read all about it, but read scientific things. Don't read the, "This is what happened to me," because it may not happen to you. You might come through with flying colors and someone's story might be so dramatic that . . . for me now, being on this cancer journey for the past number of years, I can't read anymore because I feel like I heard so many stories, read so many different things that it drains me. And I can't allow myself to be drained because I know how negative I'll feel and I just can't afford that because that means I'll just fall into a cave.

Interviewer: How has this experience changed the way you view things, life?

Carri: It's allowed me to challenge my limits. It's allowed me to say, "I'm going to do this," and it allows me to when I say something and I'm going to tell someone, I'm going to do something, that means I'm going to do it because I don't want to not follow through with something. And that's challenged my belief system. It's challenged me to understand that I'm not in control of my life. I don't know what is in control of my life. It's challenged me to look inward and develop my own faith. And when I say, "my own faith," I don't mean religion, but it means for me to find my own God.

Interviewer: Any final thoughts?

Carri: Don't get colon cancer.

Interviewer: If there's anything you can do to prevent it. And get that colonoscopy right? You put it off for two and a half years.

Carri: I know.

Interviewer: And it's probably fortunate that it didn't get any longer than that.

Carri: So get the colonoscopy because I know the prep sucks and it's awful, but get the colonoscopy because no one wants that. Believe me, no one wants it.

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