Crit Luallen, a colon cancer survivor shares her story with Jim Foster, host of the Cancer Interviews podcast about how a routine Colonoscopy led to the same diagnosis her mother had received years previously and how she survived colon cancer after undergoing colon resection surgery, chemotherapy and radiation therapy.
When Crit Luallen’s mother died of colon cancer, that inspired Crit, then in her fifties, to get a colonoscopy. She and her husband were shocked to learn that she, too, had the disease.
Crit is from central Kentucky and to this day lives in the farmhouse outside the state capital of Frankfort. She went to Centre College, a small liberal arts college and from there began working in political campaigns that ultimately evolved into public policy positions. Serving with seven Kentucky governors throughout her career, right before her cancer diagnosis, Crit Luallen was the state auditor, then rose to become the Commonwealth’s 56th Lieutenant Governor.
Crit was in good health at the time of her diagnosis. In her early fifties, she recalls she was not paying enough attention to diet and exercise. Post-treatment, all that has changed, as she engages in every single preventive test that is possible. These include mammograms, bone density tests, pap smears, and I go in for a colonoscopy once every two years.
There was a history of cancer in Crit’s family. Her mother had died of colon cancer. When going to gynecologist for an annual checkup, she suggested I get a colonoscopy because I had passed age 50. It was a routine screening and immediately it detected the cancer. Were it not for her gynecologist pushing for me to fast-track a colonoscopy, Crit asks, “Who knows what would have happened to me?” As it was, it was early stage, and it was treated.
Nonetheless, the news of her diagnosis came as a shock to crit and her husband because she had no symptoms and no warning. Crit was relieved to know that topnotch care was not far away at the Markey Cancer Center at the University of Kentucky. That’s where she underwent a colon resection to remove the tumor. It was Crit’s good fortune that she had a longtime friend who was a surgeon, one who provided a good overview of her options.
At the time, Crit was state auditor, a highly visible position and decided to make her cancer journey very public. When her mother was diagnosed with colon cancer, she didn’t want anybody to know because at that time, colon cancer, or any cancer, was considered a death sentence. In Crit’s case, she put out a press release detailing her diagnosis, treatment and recovery. Then she and her husband personally telephoned a long list of friends and relatives. She wanted to be as transparent about her journey as possible.
In addition to the colon resection, Crit underwent chemotherapy and radiation for a little over three months. Their side effects were the most difficult part of the journey, resulting in her being hospitalized for fifteen days. Her digestive system was destroyed and she couldn’t function properly. She was very sick and now admits she didn’t know if she was going to survive. Crit said the transition from having no symptoms to becoming that ill, was traumatic.
Through this very difficult time, her husband was her primary caregiver, and he did an outstanding job. He was right beside her every step of the way, and Crit said it was important that any time she was in any important discussion with her care team, he was there, too. This was significant because this way her husband had some level of familiarity with the treatment process.
Once Crit Luallen learned she was in remission, she was very relieved, but it took a long time for her to get thinking every day about her cancer’s possible return. Physically, things returned to normal after a few months.
Additional Resources:
Support Group: Colon Cancer Prevention Project Louisville, Kentucky
Transcription:
Crit Luallen…
Jim Foster: Hello and welcome to the Cancer Interviews podcast. I’m your host, Jim Foster. If you find the information from today’s episode to be helpful, we invite you to subscribe to our podcast and YouTube channel by clicking on the links below and clicking on the bell when we post a new episode. Please note that we do not provide medical advice on this podcast, and we recommend that you consult with a licensed medical doctor regarding your situation. On this episode, we have an amazing guest with us, whose story will hopefully provide a great deal of information and inspiration. She is a colon cancer survivor and is joining us from her farm outside Frankfort, Kentucky. She has enjoyed a long career in public service and has served under seven governors in the great Commonwealth of Kentucky, and ultimately served as its 56th Lieutenant Governor. So please join me in welcoming Crit Luallen to Cancer Interviews.
Crit Luallen: Thank you, Jim. It’s great to join you this morning.
JF: We’re very glad to have you and thanks so much for being here, and taking time out of your busy day, and sharing your story with us. If you are ready, let’s get right to it. Sounds good?
CL: Sounds great.
JF: So, before we get into your cancer journey, why don’t you take a few moments to tell us about yourself, like where you are from, what your life was like growing up, what your interests were, and what your work was prior to your cancer experience.
CL: Thanks, Jim, and I think it is great the work you are doing to hear the stories of cancer survivors. I think we are the ones who are best positioned to give hope to those who are going through the cancer experience. When I was growing up, I lived right on this farm where I live today. My family has very deep roots in central Kentucky, and I live in the old farmhouse where I was born and raised outside Frankfort, our capital city, and I have five older brothers, which I think helped me when I got later got into the political arena because it occurred to me that there wasn’t anything I couldn’t do that boys could do, that gave me a sort of training as I entered politics. I went to Centre College, which is a small liberal arts in college in Kentucky, then I began working in political campaigns that ultimately evolved into public policy positions. I served with seven Kentucky governors throughout my career. Right before my cancer diagnosis, I was serving as Kentucky’s state auditor as an elected position. I had run statewide and been elected that prior year to a four-year term when I had received my cancer diagnosis. After I was treated successfully, I was able to return to my career, I never stepped down from my job, I kept working, and later served as Lieutenant Governor of Kentucky. Now I am retired and serving very actively on various boards and involved in political campaign work on behalf of various candidates.
JF: That’s quite a resume of passion and public service. Over the years, what would you say was your most fulfilling role?
CL: Well, when I served as Lieutenant Governor, Kentucky had embraced enthusiastically the passage of the Affordable Care Act under President Barack Obama, and our governor at the time, Steve Beshear, saw it as a great opportunity for Kentucky to address our systemic challenges in the health of our people. We have some of the worst statistics for health in Kentucky, and that includes the highest rate for cancer in America. We have some of the worst statistics for heart disease, lung disease, obesity, we have a very rate of smoking that has of course been a factor in all of that. So, as Lieutenant Governor, I shared an initiative called Kentucky Health Now. It was our job to track the progress that was made when we began to expand health care to many more Kentuckians, about 400,000 Kentuckians were reached through that effort. We were really pushing the idea of more prevention, more screening, having more people that had never seen a doctor, having a medical home where they could get the appropriate checkups and preventive care. We saw that, and still see that as the real key to turning around Kentucky’s traditional health challenges for people. So that role that I played as Lieutenant Governor was very rewarding and I think we were making a big difference.
JF: As for your health, what was it like before your cancer experience?
CL: I was in good health. I was in my early fifties when this happened. As I look back on it, I was not paying enough attention to diet and exercise, all the things I know much more about now. I think we all, when we are younger, tend to think these issues won’t impact us, so after my cancer, I became much more focused and intentional about my diet, exercise, taking care of myself, making sure I am doing every single preventive test that’s possible, and just having much more awareness, but overall, I was in good health when this happened.
JF: Was there a history of cancer in your family?
CL: Yes. In fact, my mother had died of colon cancer, and that was the trigger for me to get my first checkup. When I turned 50, it was actually my gynecologist, when I went in for an annual routine checkup that said I should get a colonoscopy at 50 because my mother had colon cancer and I put it off for a year because I had no symptoms, I felt fine, I didn’t see any reason to rush into it, and when I went the next year for another checkup, she said you have to get a colonoscopy, you are very high-risk, so I did that, went in for a colonoscopy. I had no symptoms; it was a routine screening, and they immediately found the cancer. So, if it had not been for that doctor really pushing me to go ahead and get that colonoscopy, who knows what the outcome might have been. As it was, it was early stage, and it was treated.
JF: And that led to early detection. I know a lot of us tend to put those tests off. In your case, what was the sequence of events that led to your diagnosis?
CL: I was absolutely shocked. Both my husband and I were reeling from the news that I had cancer because we had no warning and no symptoms. I considered myself very healthy. We were immediately referred to the Markey Cancer Center at the University of Kentucky, which is a nationally accredited cancer center here and thankfully I was able to have a team of doctors at the Markey Cancer Center, who then worked with us on a scheduled treatment, and it was very helpful to be close to home. When my mother had colon cancer, she died in 1986, and at that point in Kentucky, everyone said you have to leave the state for treatment, we don’t have the skills here to treat you successfully. So, in my mother’s case, we were back and forth to the MD Anderson Clinic in Texas for more than three years prior to her passing away. Now we have an outstanding cancer facility at the University of Kentucky, we have another one, the Brown Cancer Center at the University of Louisville, and that’s a real positive development for the people of Kentucky because we have received topnotch care here locally. I had surgery and had a colon resection that was successful in removing the tumor.
JF: When you found out, your husband was with you, and you felt confident in your doctor and the proposed treatment. Did you pursue any other opinions, or did you feel completely confident with the medical team that you had in place?
CL: Well, I had a close friend who I went to grade school and high school with here in Kentucky and was a surgeon in Lexington. He provided me a good overview of what my options were, and he did some research on where the best skills and abilities were with my particular situation, and I had great faith in him, and in the end, he told me he thought I could find everything I need in terms of expertise here in Kentucky at the University of Kentucky. I was fortunate because I had someone who did that background work for me. If I had not had confidence in him, I certainly would have looked around on my own and gotten some second opinions, perhaps, but in that case, I had a very good, trusted friend who helped me make the final decision to be treated at the Markey Cancer Center.
JF: You were with your husband when you found out. Did you tell your friends and family right away, or what was that process like?
CL: That was an interesting process because at the time I was serving as State Auditor, which is an elected position. I had television advertising and had traveled all over the state, and spent a year running for office, so I was highly visible and I was serving in a position of trust on behalf of the voters of Kentucky and we decided we had to make my medical diagnosis very public because we didn’t want it to look like we were hiding the information from the public, or we didn’t want rumors started that were not accurate about what my prognosis might be. In politics, I have learned over time it is best to be as transparent as possible. So, we actually did a press release that laid out the details of exactly what my diagnosis was, what my prognosis was, we had a quote in there from my doctor explaining our path forward and that was difficult I think for my family, my extended family. My husband and I had to divide up a long list of relatives and call everyone and explain it personally before they saw it in the newspaper, and that was difficult. You know, one thing I have learned over time is we still have a stigma involving cancer that we all have to work to overcome. In my mother’s generation, she didn’t get the proper checkups and have the proper preventive care because she was afraid to know if she had cancer, because to her generation, it was considered a death sentence. Now we know so much more about it, and that’s why I think we all need to be transparent about our situations and talk to people openly about it. I remember one relative I told asked me if I had to tell people about this diagnosis, and I said yes, we have to tell people, and she said they will all think differently of me now, and I think that speaks to the stigma that surrounds cancer, and I think we all feel that when we get this diagnosis. People will feel great sorrow and pity for us, or they don’t know what to say or do, and I think the more we talk about it, the more open we are about it, the more that helps to dispel that stigma and let people know that this is something that happens in everyone’s life. I have done a lot of public speaking about cancer in encouraging preventive care, and one of the things I have said is if cancer hasn’t touched you or your family, it just hasn’t happened yet, because it is prevalent everywhere, and we know so much more now about how to prevent it and treat it, that we need to be very open about it and very transparent about all of it, so that’s what we did in my case and we very up front along the way.
JF: Ladies and gentlemen, our guest is Crit Luallen, former Lieutenant Governor of Kentucky and very fortunate colon cancer survivor. Crit, without going into huge detail, can you give us an overview of your cancer treatments? Was there surgery, chemotherapy, radiation treatment, some combination of those?
CL: Well, I had surgery and chemo and radiation, and in my case, it was the side effects of the chemo and radiation, which were the most difficult aspect of my cancer journey. I spent fifteen days in the hospital dealing with side effects of the chemo and radiation, and there was a time during that period I was very, very sick. Basically, the chemo and radiation had destroyed my digestive system and I just couldn’t function properly. I was very ill. There was a time there in which I wasn’t sure I was coming home, and to go from having no symptoms and not know I had a problem to suddenly being that ill, was traumatic. It was hard for my family; it was a very difficult time. There were a couple of lessons learned in my case, I think. One is, if you are a cancer patient, if you have a diagnosis of cancer, spend a lot of energy in the beginning making sure you have the team you trust, and then once you have that team together and you have analyzed all your options about who is going to treat you and where you are going to receive treatment, how it is going to be done, then put your faith in that team. I know in my case, I am sort of take-charge, want to boss people around type personality, and I had to put that aside, and put myself in the hands of my medical team, and focus myself on staying positive and hopeful. That’s my other significant piece of advice, is don’t ever think that there is not a connection between your mental health and your physical health. If you are positive and hopeful, and focused on the future, it really does help you fight this. The more you can keep your thoughts focused on the potential beyond the disease, to envision the things you will do and the places you’ll go, and the children and grandchildren you’ll spend time with when this is over, and not fixating on the anxieties and fears that are so difficult to battle every day, it really does help you get through it and it helps your family get through it. Sometimes I think these cancer cases are harder on the caregivers than the patient. We know how we are feeling and what we are going through, but spouses and partners and immediate family all are terrified for us to don’t know what to do to help, and anything we can do as patients I think to stay as positive as possible really helps the whole situation.
JF: You mentioned caregivers. Was your husband one of your caregivers?
CL: He was my primary caregiver; he took great care of me. We have grown children. Everyone was very helpful, but my husband was right there beside me and I think that is a key to recovery is being sure that your spouse is involved and engaged in every discussion with the medical team so that they understand and know what’s going on and why and can be as supportive as possible. I have friends who don’t have immediate family who have gone through cancer, and it is so much more difficult when you don’t have just the physical support and the care, and the emotional support of having someone you can share it with, someone you can talk to about it, and share your deepest fears and concerns. Every cancer patient needs to identify who are those people who are closest, who are emotionally connected, so you are not alone.
JF: Were you able to undergo your treatment close to home?
CL: I live about thirty minutes from the University of Kentucky Markey Cancer Center, so I was very fortunate in that regard. I was able to drive over easily for my treatments, so when I would have chemo and we would spend the day there, having infusions. I would go there for radiation treatment, friends and family would take turns taking me because I wasn’t feeling well once it started. And then spent fifteen days as an in-patient because I had had such severe side effects, so we were fortunate that it was close, because as I’d mentioned, when my mother was diagnosed, we were driving back and forth to Texas from Kentucky, which is not a simple task. That is one of the biggest challenges. If you can get your treatment close to home, it ensures not only that you don’t have the hassle of travel, but you also are also surrounded by your network of family and friends who can provide support and encouragement, and in my case that was extremely helpful. In my mother’s case, when I took her to Texas, last time we were down there, we spent three months dealing with her chemo treatments and her side effects of that, and we were totally isolated from her network of family and friends. She was 72 years old and had a lot of extended family here in Kentucky, so in the end, we brought her back home on an ambulance plane because she didn’t want to die there away from all of the people who cared about her.
JF: I know when I was diagnosed with cancer the first time, not only did I feel all alone, even though my parents were there and so forth, one of the big fears other than hearing the diagnosis was I gonna lose my hair? I did, both times, though it did grow back, so I have to ask did you lose your hair during your treatment?
CL: I lost a lot of my hair, but not all of it. I have very skinny hair, it’s very thin and scraggly, so then I wore my hair longer. I think women in particular have a lot of identity with their hair. I was not as affected as some people are. My mother lost all of her hair and took great pride in the array of wigs that she acquired. In my case, I was fortunate. I didn’t lose it all, but is a source of anxiety for us all because our hair is part of our identity because it is one of the pieces that make you feel like you are no longer in control of your life, and that is one piece of it that is highly visible. Some people’s hair grows back better, it comes back curlier or comes back thicker or you don’t know what the future might hold, but I tried to stay as positive about that as I could.
JF: Along your cancer journey, what was your lowest point?
CL: I think it when I was in the hospital dealing with the side effects of chemo because they were having a very hard time, and I felt like my health was deteriorating in a way that I might not be able to recover. As I mentioned, that seemed so shocking because I had not been sick, and I had not had any symptoms before, but my husband stayed very close to me through all of that. We were planning a trip to celebrate our 25th wedding anniversary when all this happened, so he would sit beside my hospital bed with a travel guide and say, “Here’s where we would have been today.” He would read me the description and say tell me which restaurant we would have gone to, just trying to encourage me to think about life outside of that hospital room. He really helped me get through it. As an anniversary gift, he bought two trees and had them planted in our yard. They were very small trees, and he told me I would be home to watch these trees grow to become adult sized trees, little things like that to keep you focused.
JF: As for your treatments, how long did they last?
CL: About three and a half months. I had to take a leave of absence for the last two months of that period as I began to have serious side effects. Then I was able to return to work once the treatments stopped and I was able to get things back in balance with my digestive tract and so forth. It wasn’t the cancer that made me so sick, it was the treatment. So I was able to return to work, and ever since then, I have been diligent about checkups because I still see a gastroenterologist at the Markey Cancer Center once a year. I do a colonoscopy once every two years, and I do every other screening I can get. I do a mammogram, I do bone density tests, I do pap smears, I do everything my doctor recommends because I am a walking, living example of the value of early screenings, especially for colon cancer. It’s the one cancer we can actually prevent with proper screening. If a colonoscopy finds polyps at an early stage, they can remove the polyps before they become cancerous, and if we can just encourage more people to see the value of that colonoscopy, even though it’s distasteful and embarrassing to talk about, people don’t like to think about it all those things, just do it. It’s so important.
JF: My doctor’s been bugging me the last three years about that---
CL: Jim, you’ve got to go do that!
JF: I am probably more at risk than most people, having Hodgkin lymphoma twice, so you are going to put me over the edge, Crit, I am going in. Thank you for that encouragement. Speaking of encouragement, tell us what it was like when you learned your cancer was in remission?
CL: It was an incredible relief, but I think every cancer patient also knows that you live for a long time afterward with a fear in the back of your mind that it is still there, or that it might come back tomorrow. It was a long time before I stopped thinking about it every day. It consumes you when you are dealing with it, and I think it takes a long time for our mind to adjust to the fact that you are really okay. Until then, you are vigilant about every little tweak that you feel, symptoms that you think might be concerning. Took me a long time before I stopped thinking about it every day.
JF: How long did it take before your life was back to normal?
CL: I was physically going about my business for a few months, but I think mentally, you are still challenged with this consuming anxiety and fear that life might get off track again very quickly if this comes back. So, I am going to say it as a couple of years before I really got to the point where I felt I was all right, and that I can focus on my future and not worry about this. It’s such an all-consuming anxiety that we go through as cancer patients, and it takes a while to get our bearings back.
JF: You mentioned your involvement with certain organizations. Can you name some of them?
CL: Well, one of them is Colon Cancer Prevention Project. Dr. Whitney Jones from Louisville founded and initiated that effort, and I found myself sitting on its board about three or four years after my cancer treatment. The Project’s efforts have been very successful at raising awareness about colon cancer screenings to those who are uninsured, and to spread the word about colon cancer screenings. In Kentucky, we took a major leap forward with the passage of the Affordable Care Act. That extended coverage to 400,000 Kentuckians. We still have a gap among Kentuckians who don’t have insurance at all or don’t have coverage for colonoscopies, so we have been working to get state government to fund a pool of money that is available for local health departments to help close that gap. Anytime I can get involved in public service discussions or interviews like this one to help raise awareness about the value of screening and to share from a survivor’s perspective some advice to those who are currently dealing with cancer. I am also on several other boards, including the state’s largest philanthropic foundation. All told, I am on about five or six boards, so I stay busy.
JF: Finally, imagine that you are speaking directly to someone who has just learned they have cancer. What would you like to say to them?
CL: I would say focus all of your energy into having hope and being as positive as you can possibly be. First, make sure you have the right medical team that can put your trust in, and then have hope and faith that you will get through this. Put yourself in the hands of that team and trust their advice. Then surround yourself with people you love and care about, and share everything you can with them, so that they are part of your journey, and be sure that that circle of friends and family that are close to you so that they can help you through it. You will be amazed at the incredible warmth and love that will come to you once they understand what you are going through and look to the future with great hope.
JF: Well, Crit, those are certainly words of wisdom, and it’s been a real honor to have you on the show today, and I am sure our listeners have learned a lot from you by sharing your journey with us. I know I have. Thank you very much for coming on the Cancer Interviews podcast.
CL: Thank you, Jim, it has been an honor to be with you.
JF: Your welcome, and if you would, please take a moment to leave your comments below, and take a moment to check out the links on our Show Notes, including lots of valuable information that Crit has shared with us today, and remember, you are not alone, and we wish you the best possible outcome with your cancer journey, so until next time, please take care and we will see you on down the road.
Support Groups:
Colon Cancer Prevention Project Louisville, Kentucky
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