Raising Colon Cancer Awareness, with Allison Rosen

Episode Transcript

Dr. Dac: Hello, and welcome to the Colon Health Podcast brought to you by Colonoscopy.com. My name is Dr. Dac Teoli and I’ll be your host for this episode where we’re gonna do things a little bit different. Today we’re gonna be having a roundtable discussion with the folks from the Colon Cancer Coalition. It’s my honor to introduce Allison Rosen, Chris Evans, and Erin Peterson.

Allison: Thanks for having us.

Dr. Dac: Thanks guys for being here. So I just wanna provide a little bit of a background for each of you. And go ahead, correct me if I’m wrong, but Allison’s board member at the Colon Cancer Coalition. She’s also project director at the Center for Health Promotion and Prevention Research. This would be over at the University of Texas Health Sciences Center in Houston. But there is a lot more to her story, and she’s gonna tell it a whole lot better than I am. So I’m gonna let her share her story very shortly. I just wanna keep you guys on the edge of your seat. I wanna head over to Erin here. So Erin serves as the mission and partnerships director at the Colon Cancer Coalition. And if I’m not mistaken, she should be about celebrating her 10-year anniversary with the organization. So congratulations on that.

Erin: Thank you.

Dr. Dac: Last but certainly not least, is Chris, who serves as the president of the coalition, after joining the organization in 2011 as the CFO, so that’s another 10-year veteran, huh?

Chris: It is. We stick around a long time.

Dr. Dac: Oh, my gosh. So that’s three very important people with a very important organization, which has a vital mission. Thank you, again, all three of you for making time to be here today.

Chris: Of course. Thank you.

Dr. Dac: I’m sure that there’s a significant amount of our listeners, especially the folks out in Minnesota, that have become quite familiar with the Colon Cancer Coalition. But for those that might not be as familiar as others, I’m wondering if we could start at the ground level and kind of work our way up with your organization. Would one of you be willing to share a little bit about the history and mission of the Colon Cancer Coalition?

Chris: Sure, I can do that. Erin, you can step in if I’ve missed something. But we were started by a woman, Kristin Lindquist, who lost her sister at age 42 to colorectal cancer. And she wanted to start events around the country where people would get together to support each other and talk about colon cancer in a very safe environment with the idea to let people know what the symptoms were and to get them screened. They have a very simple vision. And from that point of 1 race, we’ve grown to over 40 events a year. We have Gear Your Rear in Gear, walk, run events. We have Tour de Tush biking events, Caboose Cup golf events, we have a Blue Moon Gala and…yeah. You kind of get where we’re going in keeping it, as a friend would say, cheeky. But the whole purpose is very serious, and that’s just to get people talking, get people aware of the signs and symptoms of colorectal cancer, to raise money. And the money goes to getting people screened, and getting people screened in any way we can get them screened. It’s a really great organization and we were lucky enough to have people that stick around for 10 years, and who believe in it. We have local event directors, which Allison is also one. Allison has many hats today, who really drive the, I call it passion to action, and really drive our work in local communities. And it’s a really neat model. We’re really happy to be here.

Dr. Dac: You know, as you were going through the names of those events, it popped in my head, you guys really did kind of a genius thing there, because a lot of folks I imagine out in the community, they might hear something about…if it was called Colon Cancer Race or something like that, they might think, “Oh, that sounds scary,” or, “Oh, sounds kind of morbid, or something I don’t wanna spend my weekend doing.” But it’s hard to turn down something called Get My Rear in Gear or the Tour de Tush. That really kind of paints it from a different angle.

Chris: Yeah, it’s following our initial thing. We just want it to be something people talk about. And the more people talk about it, the more people get screened. So we’re very, very excited to start getting into some of our events again. They’re going from virtual to somewhat getting together and providing that support and that awareness at our events. It is really fun. Even though it’s a serious topic, it’s a fun day. It’s a supportive day, it’s an emotional day. We really like our events.

Dr. Dac: That’s tremendous. Thanks, again, all three of you for your involvement and keeping that going in, I guess, what, going on two decades, approximately now. So that’s awesome. And I was curious and hoping Allison, would you be able to share a little bit of your personal story about what brought you to the coalition, why colon cancer is so important to you personally?

Allison: Sure. Sure, of course. At the age of 32, after experiencing some symptoms that I had no idea were symptoms for colorectal cancer, I was diagnosed. I wanna say out of the blue, but essentially for six months I started having, you know, change in bowel habits, blood on my stool, I was fatigued, I was tired, I was anemic, I found out later. There was lots of different things going on, my bowel habits were changing, and I was really in tune with my body. I was very lucky that my doctor listened to me when I said something was wrong. I had a colonoscopy, and I was diagnosed with stage two colorectal cancer.

So stage two is, you know, relatively early, so I was lucky in that aspect as well. I still had to go through chemotherapy, radiation, surgeries. I now have a permanent ostomy bag that’s named Phil. But, you know, when I was first diagnosed, I needed support. I wanted to find other people like me. I needed a community of people that just understood me. So the truth is I went to Google, I said, “Colon cancer support, colon cancer race for Houston.” I live in Houston, and all my friends and family wanted to do something. And really, I didn’t want food, I couldn’t really eat that much. And I didn’t need any gifts, I just wanted to get back and meet other people. So when I googled that, the Get Your Rear in Gear Houston race popped up, and boom, I knew exactly what I was gonna do. It was, I think, two months. I’d had, you know, some treatment. I was still in active treatment. And I got all my friends and family members and the community together and formed a team. And it was great. And that was…God, I think that was like eight, nine years ago.

And going to that race and seeing other people, especially younger people like me, that had gone through it, were going through it, I really felt like I found my community. And so that led me to continue to do the race, to volunteer for the race, and now I run the Houston race. And I just love the mission of the coalition. I love the fact that I can give back to my local Houston community that gave me my life back, essentially. And that’s what drew me to the coalition. The people that run it are amazing. They’re my friends and my family actually. We have the same mission and I love doing everything I can exactly like Chris said, to spread awareness, to make sure no one else has to go through what I went through.

Dr. Dac: Wow. Thanks for sharing that. Diagnosed at 32 you said, huh?

Allison: Yeah. Very young. And I had no idea that I could get it. I had no idea. I thought just like a lot of people probably listening or that might listen, I thought it was for 50 and above, and I thought it was mainly men. And now I’m so much better educated about it, and realize that if you have a colon, you’re at risk. So the best thing you can do is be your own best advocate, and know the signs and symptoms, and know when something isn’t right, to seek medical attention.

Dr. Dac: Tremendous points, because so many folks, as you alluded to, think 50s, 60s, maybe I’m tired, maybe I’m having some blood in my stool, but nothing to worry about, I’m 40 or I’m 30, no big deal. But as you alluded to, and as you lived, it can be pretty serious stuff.

Allison: Yeah. A lot of people are afraid of a colonoscopy. And truthfully, I say this so many times out loud when I, you know, get to work in this arena, as well as advocate in this arena that a colonoscopy is so much better than chemotherapy. It’s so much better than cancer. And it’s the best sleep I’ve ever had. You have the prep the day before you go and you have the procedure. You either don’t have to do it again for 10 years, or they find precancerous polyps, or…you know, there’s different options that might happen but the best thing you can do for yourself is to get screened because it’s the only thing that can potentially save your life from this mostly preventable cancer.

Dr. Dac: Right. A lot of folks, they worry, “Oh, I’m due for a colonoscopy. Oh, no, that does not sound comfortable. I’m gonna put that off for another 5 years, 10 years because that sounds painful.” What was your experience, your recollection of it? Did you have a lot of pain at the time with that procedure, or like you alluded to, I think, maybe were you asleep for it?

Allison: No pain during the procedure. It was the easiest procedure I’ve had. And let me tell you I’ve had lots of procedures before that, and since that. The hardest part that people always say is the prep, and it’s really not that hard if you talk to your doctor about different things. If you clear liquids the day before. So there’s different tricks that I’ve learned along the way like a lemon icy. You feel like you’re still eating but it is essentially a clear liquid that you can have. And so I distract myself with work. I do the clear liquids. I see it as a cleanse. You know, you get to lose a lot of that water weight, a few extra pounds and then you just…I mean it is, like we said, cheeky. I really make it as entertaining as possible. Like I said, you know, I have soup, and jello, and all the things that you need to do. And I’ve learned along the way different tips and tricks using a straw, you know, holding my nose when I’m drinking the prep and pretending like I’m drinking something that is gonna make me lose weight. It’s all different things that you do but that prep really was no big deal. You’re just spending a lot of time in the bathroom, so you find a good book, you find a good movie, and you keep it with you for that night. And then you wake up the next morning, go in for the procedure, and it’s done so fast. And like I said, I felt like I got the best sleep of my life because I’m put to sleep. I need to have the anesthesia for most procedures just because of my medical history. So I’m put to sleep, I wake up, I feel like nothing has ever happened. Then I get to go home, I get to rest. And then when I wake up, I have a light meal, you know. I always make my mom get me a Wendy’s shake because I really want something sweet and that will be easy on my stomach. And that’s what I usually get after every colonoscopy.

Dr. Dac: Right.

Chris: The best part of the colonoscopy by the way is the first meal after the colonoscopy.

Dr. Dac: That’s a good point. You mentioned the prep a couple of times, and a lot of folks worry about the actual procedure and the scope. But then there’s another group that have heard the horror stories about the prep. And you alluded to it actually. Those are some pretty ingenious techniques of how to tolerate that. But I’m familiar with what it is, you’re familiar with what prep is, but for some of our listeners who might be wondering or googling even what’s prep, what’s that mean, can you share a little bit more about what that actually is?

Allison: Sure. There’s different types of prescription preps. And there are some even as simple as MiraLAX and Gatorade. So obviously talk to your doctor about whatever preparation they want you to do. And essentially, it is you drink a liquid, and it helps clear out your bowels because essentially, when people look in your colon to see if there are any polyps or any abnormalities, they can’t see it if there’s stool in there. So essentially, you’re doing a cleanse, like I said. That’s what I see it as, and that’s how I see it every time I have one. You’re drinking something and it makes you go to the restroom. But once you drink it, usually within a few hours you’re in the restroom and you’re just going to the bathroom for a few hours, and you’re going to the bathroom until what’s coming out is clear.

Once it’s clear, you know that when they put that scope up there and they look, they’ll be able to see everything. The cleaner the last thing that comes out of you, the better that colonoscopy will be because the last thing you wanna do is drink clear liquids, drink this preparation, and then have to have it again. So you wanna be as, you know, say cleaned out as possible so that the doctor can have a clear view of what’s going in your colon. And it can be…I don’t know. There are some that there’s lots of liquid, there are pill versions for colonoscopy prep. Like I said, there’s something, MiraLAX and Gatorade, some doctors do. But really talking to your doctor about the different options for colonoscopy preps is a good conversation to have.

Dr. Dac: Gotcha. And in order to do the prep, that’s not something that folks have to be in the hospital to do the prep or they don’t have to be in the doctor’s office to do the prep? They could just do that in the privacy of their own home, huh?

Allison: Exactly. Like I said, I go into a room, I’m really close to a restroom, get a book, put a movie on, and I just wanna be sort of left alone while you’re drinking this. Yes, you do not have to be in the hospital for this, comfort of your own home. It’s not until the next day that you go in. And a colonoscopy is outpatient. You never stay in the hospital. You go for the prep, you come home, and you take a long nap usually, and you eat a decent meal, and you’re good to go the next day, to go back to work or do whatever you like to do.

Dr. Dac: I’m so glad that actually you mentioned that too, because some folks worry, “Oh, you know, I can’t miss work for a week. I don’t have time to get this procedure done. I have to earn a living. I can’t miss work for that many days.” But it sounds like the next day or two, if everything goes well, they can get back on their feet and get back to work. Is that right?

Allison: Yeah. I mean, I usually try to get my colonoscopy to be early in the morning. So you have it in the morning, you take a little nap, you have a little meal. I’m always usually good to go by the next day. But usually you always get a phone call from people that did the colonoscopy just to check on you and make sure you’re okay. And if something is a little bit off, and you know your body really well, then you can tell them and they’ll figure out if something is going on. But they give you a list of all the potential things to look for. And you don’t wanna go out eat a cheeseburger and fries and, you know, a huge, heavy meal, because you’ve just been on clear liquids and essentially cleaned yourself out. So I choose to eat light for a day, and then the next day I sort of ease back into regular food. You can have solid food after the colonoscopy. But like I said, usually my favorite thing is to get a Wendy’s frosty and then I’ll usually have some eggs, and then later that night maybe, you know, some turkey or whatever you feel comfortable eating. And when you’re discharged and you leave the hospital, you will get a list of, just like if you were in the hospital, a list of things you shouldn’t do after your procedure. But mostly, everyone I know goes back to work the next day. So you miss maybe a day of work, and that’s it, and a day of work that could essentially save your life or save you from having to go through cancer treatment is huge. So it’s worth that day for sure.

Dr. Dac: There you have it, folks. Allison, I’m curious, because we’ve been talking about the colonoscopies and that is tremendous for the screening early on, catching things early, prevention, etc., but what about the folks that have already been diagnosed and maybe they’re at that decision point then of pursuing treatment, or not pursuing treatment, how did treatment go for you? It sounds like you had chemotherapy, and it sounds like surgical intervention as well. But any radiation or how did your treatment go?

Allison: Yeah. So I’m not gonna say that treatment was easy, but I had an amazing support system. I had an amazing care team. And they were there every step of the way. So I had a combination of chemotherapy and radiation for five and a half weeks. I had a little bit of a break, then I had surgery, and then I had chemotherapy again. And unfortunately, I’ve had a few extra surgeries along the way. But if something came up during chemotherapy, they would give me some medicine or treatment. If something came up during radiation, they would give me a medicine to help with that. So they really know what might happen, anticipate what might happen, and they give you medicine like nausea meds, pain meds, all sorts of different medicines to go along the way.

I’m talking now, I’m a nine-year survivor, and I’m living my best life possible with my ostomy. But at the beginning, it’s not as easy as, “Okay, this is no big deal.” Some people it’s easier than others, but depending on the stage and the type of treatment that you get, it can be a little bit hard. And this is when you want support. And this is why, you know, I got involved in the coalition. I met my first other patient survivor when I went to that race, when I was first diagnosed, and they just understood what I was going through and they helped me get…they were a perfect stranger, but they helped me get through some of the hardest times throughout my treatment because no one I knew at that time had gone through what I was about to go through or what I was currently going through. So like I said earlier, a colonoscopy, so much better than cancer treatment. But if you have to go through it, you do not have to be alone. There is support out there. There are resources to help you along the way. And really, connections with others and becoming involved in the community is really…I say this a lot, it’s what sort of helped save my life besides my medical team and my family and friends that were my support system.

Dr. Dac: That’s so huge, having that support system, family, friends, neighbors. And you kind of alluded to it, though, some folks, unfortunately, just don’t have those kind of resources and support network in place but, as you mentioned, they don’t have to go through the diagnosis, the treatment alone because of organizations like the Colon Cancer Coalition. And I’m curious, I’m just gonna jump right to that because I want an answer to tie this into. Other than in-person meetings with your organization, is there other ways folks can reach out and get in touch with other survivors or other people who are living with colon cancer? Is there some sort of whether it’s a forum, or some kind of a mailing list, or anything else similar to that, that folks can get in contact with, say if they live in rural West Virginia, or something along that nature?

Erin: Sure. This is Erin. I can take that. Well, Allison right now is kind of building a patient survivor network that works with our staff to help us with that and kind of develop a small community there. But then we believe that the Colon Cancer Coalition that if there are things that are being done well by someone else, that we don’t need to recreate that. So we partner with an organization called Colontown, they are on Facebook, and it’s a great online support system. And they have a large community that’s broken up into several smaller communities based on the needs of the patients. So there’s some geographical communities, there’s some communities that are based on the diagnosis, stage of diagnosis, location of…whether it is colon cancer or rectal cancer, there’s support groups on Facebook. There’s Colontown for…specifically for caregivers, or people with permanent ostomies, all of that exists. And we think that resource is truly incredible so we encourage the patients that come to us looking for that online support to work with Colontown.

Dr. Dac: That’s smart because hey, why reinvent the wheel? Everyone has a finite amount of resources and assets and there’s an excellent resource out there already that Colon Coalition can, you know, kind of point those resources elsewhere, such as your events that do tremendous for the community.

Erin: Exactly. And giving people screening too. So, yeah.

Dr. Dac: What else would you like to share with us? We’ve talked about some of these events. And again, I shouldn’t make you go through all those clever names for these again, that’s for something else. But what other resources would you like to tell us about or what else about your online portal?

Allison: I’ll let Erin and Chris talk in a sec. But for me why I also love the coalition is if you have an idea for something that you wanna do, or a race maybe isn’t in your city, and you reach out to them, they will help you plan it. This is why I love them. I say, “Hey, I need a graphic for…I wanna do a colon cancer awareness baseball game, you know, partnering with this group,” and they’ll help you plan that so you can reach people within your community, spread awareness, get people screened, do whatever. So they have the partnerships, they have the connections, and you ask, and they have the resources to help you make that happen. So maybe Chris or Erin wants to talk about some of the other smaller things that people do. But for me, if someone doesn’t wanna come to my Get Your Rear in Gear Houston 5K, but…because they can’t run or walk or don’t want to, they might be coming to my colon cancer, you know, awareness baseball game that I’m organizing with the minor league team.

Chris: So this is Chris. We did learn, especially over COVID, how important it was to allow people to do things in the space their own way. And the fundraiser ways like the baseball games, and we had a kid who cut his hair for a fundraiser, who raised a tremendous amount of money. And we’ve had nighttime glowstick games, and it’s like a zombie game, just anything that somebody can think of that’s their way to give back, we give them that vehicle on our website and with our staff. We feel like we started that with the Get Your Rear in Gear. There’s not one Get Your Rear in Gear that looks exactly like another. It has the personality of the person that started it. And I really like that about us. We’re not a very corporate-stamped event. It’s all very personal. And it speaks to whatever’s important to that person, whether it be the hospital, whether it be young-onset, whether it be some patient care or some awareness. Everyone has their own thing they wanna accomplish. And we’re there to do that. And I think Allison, that was very nice of you to say, by the way, Allison, I appreciate your feeling about that.

Allison: Of course.

Erin: This is Erin, if I can just add to what Chris was saying is we are very grassroots-driven, so we will kind of do what is needed in the community where it is. So when we talk about Get Your Rear in Gear events specifically, the lead volunteers there and the committees that are developed around them have a say in how the money that they raised is used in their local community, whether it’s for screening, awareness, patient support, and how that happens within Houston for example, or within one of our other communities, our volunteers become part of that network of the final funding, like the money that they raised through their race gets dedicated with their help. And I think that sets us apart from other nonprofit organizations and organizations within the colorectal cancer space in allowing our volunteers to have some say in that at the end of the day.

Dr. Dac: Right. Awesome. So say someone listening right now they have an idea for an event and it’s for their grandma or for their daughter or for their dad, what would be their next step then? They would go to the website or would they call you guys up directly, or can you walk me through, okay, I have an idea, what should be my step two?

Chris: Well, we will really take the inquiry any way they can get to us. You can always email info@coloncancercoalition.org or we have a lot of information on our website. If you go to coloncancercoalition.org and you look at Donate, there’s ways to start Get Your Rear in Gear events, fundraise your way events, but we like talking to people. So if there’s one, email us and give us that idea, we’ll help them through it. I don’t think there’s really been somebody that had a passionate idea that we didn’t perform for. So if you wanna call the number, well, we answer that too. You wanna reach out to us on Facebook, we’ll find you.

Dr. Dac: Perfect. And say, you know what, maybe I don’t have an idea for an event but darn it, I love your guys’ mission, and if I wanted to donate funds to the coalition, would I similarly do that, reach out in any particular way or any way?

Erin: The website is probably a bit easier. Otherwise, phone, or like Chris said, the info email line, we will get connected with you that way too.

Dr. Dac: Gotcha. Anything else the three of you wanted to touch on tonight before we wrap up? And again, I appreciate all of your time. And I’m curious, is there anything else you wanted to address whether it’s about your personal stories, about colon cancer, about the coalition, just general tips for life, any final words for us?

Allison: I think for me, from a patient perspective, you are your own best advocate, if you think something is wrong, please seek medical care. If one person ignores what’s going on, find a doctor that will listen to you, because screening can save your life. I go around talking and telling my story because screening did save my life. If I hadn’t realized something was wrong and seen my doctor, I’m confident I wouldn’t be here now talking to you. And I just want people to realize that it can save their lives, it’s really not that bad of a screening, you know, method to have. We didn’t even go into the fact that you don’t even have to do a colonoscopy to be screened, there are other screening modalities that are easy, affordable, at home, you know, stool-based tests that you can do as well. But screening saves lives. And then, unfortunately, if you are diagnosed, you’re not alone. There are organizations like the coalition that can be there for you, and people within the organization can connect you with other people and your voice, your story can be heard and help save lives, when you’re ready, but also the support that you need, they can help you find the resources that you need.

Chris: I think that Allison said well. I just wanna emphasize the point that you know your body, and if the first doctor says, “Don’t worry about it, you’re too young,” or, “It’s just this,” or, “It’s just that,” just keep advocating, just keep going to the guy who listens or the gal who listens to you, and really get the answers. And I think that we’ve had so many young survivors who are still with us because they had a physician that really, really listened and was aware that anyone of any age could get colon cancer. And I just wanna point that out because other people get ignored. And I really, really, really wanna say advocate for yourself. I’m underlining that for Allison.

Erin: I don’t have a lot to add other than if you are going through a scare about symptoms or have been screened and now are looking at treatment, the colon cancer community, the colorectal cancer community is an amazing group of people. I have never seen a group of strangers that are family the minute they meet each other as much as colon cancer and rectal cancer patients are when they meet other people in the same…I’m going through the same thing. So don’t ever feel like you’re alone, and that there are people that want to be there for you and support you and make you part of their extended family.

Dr. Dac: Good advice from all three of you. Allison, Chris, and Erin, I really wanna thank you for being on the show tonight but even more so for your years of hard work and dedication to this important community.

Together: Thank you.

Allison: Thank you so much for having us.

Dr. Dac: The pleasure is definitely all mine. And thank you again also to our listeners for tuning in today and listening. There you have it. Be sure to check out the Colon Cancer Coalition. They have a lot of resources, a lot of different options for you no matter where you are across the country. So you don’t have to be in Minnesota, you don’t have to be in Texas, reach out to them, just any way you can. It sounds like a tremendous organization. And thanks again for tuning in. Be sure to like this episode on your favorite podcast apps or your social media networks, and make sure you let us know what you wanna hear in the future, whether that’s healthcare-related issues or more about organizations just like the Colon Cancer Coalition. Have a good night, good health and we’ll see you next time.