Liver Transplant is Priceless Gift for Woman Battling Advanced Colon Cancer

Podcast Transcript

Kyle: Welcome to The Comeback, I'm your host Kyle Michael Miller. During this episode we're talking with Carole Motycka, a mother of four fighting stage 4 colon cancer. We'll tell you how a living liver transplant played a major role in her care. Also joining us is liver transplant surgeon Dr. Cristiano Quintini, but first, here’s Carole in her own words.

Carole: My name is Carole Motycka. I'm 44 years old and I live in Northwest Ohio. In 2016, I went to the hospital with shoulder pain. They ran some tests and I expected to be treated for muscle strains, but I was shocked when the doctor told me I had stage 4 colorectal cancer. I came to Cleveland and was treated with a variety of treatments and was doing well for two years. And then my liver began to fail. A liver transplant was my best option. Eight months after the failure, I received a living donor transplant from a friend at church. Today I'm feeling fantastic and look forward to abundant life with my family.

Kyle: Carole, Dr. Quintini, thank you so much for joining us today.

Dr. Quintini: Thank you for having us.

Carole: Thank you.

Kyle: Carole, you have been on quite a wild ride the past couple of years. How are you doing today?

Carole: I'm doing quite well. I'm feeling great. I'm back to doing all the things that I used to do before all of this started. So yeah, I feel I feel fantastic. Just got back from California as a matter of fact!

Kyle: That's great. So we're going to dive into your medical journey a little bit. A few years ago back in 2016 you were healthy, you were active, you had just had a 17-mile hike and then you started experiencing pain in your back and shoulder. Did you have any idea how serious your condition was?

Carole:  No. I had no symptoms whatsoever, I was asymptomatic. I felt like I'd fallen from walking on uneven surfaces - I must have stumbled and not noticed. I'm not usually one to rush off to the doctor.  I went to the emergency room a week later and thought that I had pulled a muscle or done something to my shoulder. I found out that it wasn't in fact that, but it led to discovering that it was a much more critical situation that I was in.

Kyle: And what was your diagnosis?

Carole: I was diagnosed with stage 4 colon cancer that had metastasized to the liver.

Kyle: When you heard those words come out of the doctor's mouth, what was your first reaction? How do you respond to something like that?

Carole: The first reaction was probably fear. I'm a human being, so of course fear of the unknown was primarily the initial feeling that I felt.  But then as things progressed and as I was put into the hands of amazing physicians and human beings like Dr. Quintini, his team, and the Cleveland Clinic, I realized that my fear was unrealized. I could take my fear and turn it into something very positive. I always felt comfort in knowing that they would take care of me regardless of what happened, they would see me through.

Kyle: Dr. Quintini you were one of the many physicians that helped Carole get better. It seemed like her diagnosis came out of nowhere. She was really active and healthy and young. Is it odd for somebody like her to face something so serious?

Dr. Quintini: It is in a way. On the other hand we know that colon cancer, particularly aggressive forms of colon cancer, are becoming more and more prevalent particularly in the younger population. It’s something that is catching the attention of a lot of doctors and scientists to try to understand why.  At the Cleveland Clinic we see a lot of these very young patients presenting with very advanced disease. In general, it is not very common but this is something that we see a lot in our practice.

Kyle: Can you walk us through Carole's initial treatment plan?

Dr. Quintini: Carole presented to us at a very advanced stage colon cancer. As Carole mentioned it was stage 4. There are different types of stage four. The moment you develop spread, that's by definition stage four. Spread can mean many different things. It can be a small little nodule on your liver or it could be different sizes. Carole presented to us with what I would define as very advanced metastasis to the liver to the point where when she presented to us there wasn't much we could offer to her in terms of surgery. Surgery is the mainstay of treatment in metastatic colon cancer along with chemotherapy. It's really a treatment plan that includes the oncologist, radiologist, surgeons and colorectal surgeons. They all work together to time the treatment and help each other’s’ treatment. But clearly when she presented to us the situation was quite, quite desperate. Again, it's not something that we never see. We see this quite often and because of the effectiveness of modern chemotherapy, I knew that there was a lot of hope because of the progress made in the past 10-15 years with chemotherapy - it's an excellent partner to surgery. The first thing we did is to check with our colleague oncologists to see if there was anything they could do to help shrink this tumor in the liver and obviously help the colon cancer as well.

Kyle: Carole, when you woke up from surgery your family asked you a certain question. They wanted to make sure you were okay. Can you take us back to that day, and what did they ask you when you woke up?

Carole: Sure. I think it was the nurse that first asked me what day it was. I think I told her what day it was and she wanted to make sure that I knew where I was. Then she asked me who the president was and I think I told her who the president was. I said oh but wait, I can do way more than that. I can tell you every president in order, and I did! Right after I woke up from anesthesia.

Kyle: Dr. Quintini, shouldn't we test her knowledge today?

Dr. Quintini: Yes.

Carole: No!

Laughter

Dr. Quintini: I'm not sure I could prove her wrong though.

Kyle:  Well I have a list with me. So Carole, rattle them off for us. Let’s see.

Carole: All right. Washington, Adams, Jefferson, Madison, Monroe, Quincy Adams, Jackson, Van Buren, Harrison, Tyler, Polk, Taylor, Fillmore, Pierce, Buchanan, Lincoln, Johnson, Grant, Hayes, Garfield, Arthur, Cleveland, Harrison, Cleveland, McKinley, Roosevelt, Taft, Wilson, Harding, Coolidge, Hoover, Roosevelt, Truman, Eisenhower, Kennedy, Johnson, Nixon, Ford, Carter, Reagan, Bush, Obama, Bush, Trump. Did I get it?

Kyle: You forgot one.

Carole: Who did I forget?

Kyle: You forgot Clinton.

Carole: Clinton! Oh sorry.

Kyle: Okay, 43 out of 44. That's pretty good.

Carole: Sorry, sorry Mr. Clinton.

Laughter

Kyle: Carole, you don't seem like somebody who would want to stay in the hospital very long, just based on your lifestyle, your energy. How is your recovery process?

Carole: It's been good. I remember one of the surgeries I woke up and he was there and he said heal quickly and no more medicine because you need to get out of the hospital. I think the Cleveland Clinic is really great about formatting a plan right away to expedite patients’ release as long as they're doing well. I was always of that mindset to get out of here faster than not get out of here, probably sometimes to my detriment because I really wanted to get home. I was probably a little bit more expeditious in getting out of here, wouldn’t you say?

Dr. Quintini: I would say you're one of those patients that always makes the doctor look good. Three or four days after a major operation they're walking around, moving around, doing things. I think you're right, Carole, I think the attitude is what makes a huge difference in the recovery process. There’s something magical about attitude where you have these major operations and even the pain at times is significantly affected by your outlook, your energy level, and your spirit for sure.

Carole: Dr. Quintini was a catalyst in helping me in some of the times when I did go to those dark places and felt down. Cleveland Clinic has a lot of opportunities there as well and they're there to help you through those times too. It was because of people like this guy, my family, and the Lord that I was able to rise up even on those dark days by having a positive attitude.

Kyle: So Carole, by January of 2017 you were cancer free but later that year you started experiencing a lot of other health issues. You didn't feel like yourself. What was going on that year?

Carole: I was weak, tired and I think I just went into basic liver failure.

Kyle: Dr. Quintini, is that something that's normal for somebody who went through the different treatments that Carole did back in 2016?

Dr. Quintini: One of the things we did with Carole is to use the strongest treatment we had available at every single stage of her care. One of the side effects of all the medications and all the treatment options that we use in cases like Carole’s is that the liver can ultimately suffer. The cancer gets treated, the cancer cells die, but normal liver cells die too at some point. We know that's one of the potential side effects of what we do. That's pretty much in a nutshell what happened. Carole’s treatments that we used were very effective in treating the cancer but at the same time put her liver over the edge. We knew that was a possibility and we had a backup plan. That's one of the nice things about the program we’re in is that it allows us to use very strong and very powerful treatment options and technologies, knowing that if things don't go as we all hope there's always a safety net. In her case, the safety net was the possibility of doing a liver transplant.

Kyle: That's because Carole was a perfect candidate for this new protocol where transplantation is used for people who have advanced colon cancer. What can you tell us about this new protocol?

Dr. Quintini: Liver transplantation has been recently introduced into the field of metastatic colon cancer. A group in Norway has pioneered this field. They discovered in a small transplant population that transplanting livers of patients with metastatic colon cancer prolonged significantly the life of these patients and therefore was a potentially viable option. Several places around the world started to implement this protocol, there are not many places, and Cleveland Clinic is one of those. Essentially, transplanting patients with colorectal metastatic cancer is based on the fact that the treatment options sometimes reach the point where the liver is damaged. Particularly chemotherapy is a very damaging treatment for the liver. The idea is to replace the liver whenever the chemotherapy has caused tremendous damage to the liver or when the cancer is not removable with conventional surgery. In those instances liver transplantation can be an option in selected patients and in selected centers. Clearly the field is much more complex and there are many more criteria that have to be fulfilled. Essentially we are replacing a liver that is diseased with either cancer or disease because of the consequence of chemotherapy, and we are replacing it with a new one. There's a chance that the cancer will come back after the transplant and that's why we monitor the patients very closely. There are some promising results that even in those patients where the cancer comes back, there can be a significant prolongation of life. Chemotherapy options change and you can have new treatments and to some extent these could be a very viable option for these patients.

Kyle: Carole when you found out that you had to have a liver transplant were you still positive, were you disappointed, or were you just ready to go and tackle the next obstacle?

Carole: I trusted him completely. Dr. Quintini has never let me down. I even make him pinky swear and he's always averse, ‘oh here we go’. But again, that's part of Cleveland Clinic.  You feel like you actually are a human being here. Besides these being amazing physicians, these are amazing human beings who care about you. I've always felt that way. I always felt a trust.  The minute he walked in, the first time we met, I felt confident and I think that's what you need in your physicians. I always felt confident that he knew what to do. He always said if this doesn't work I always have a backup, I always have something else. I knew that with him saying that he was always thinking ahead. He wasn't just sitting on this one option. He was always advanced in his thinking. When he said liver transplant, certainly it's scary but what were my other options? So again, it goes back to my faith and trusting in Dr. Quintini.

Kyle: Then you began a grassroots campaign to find a donor.

Carole: I asked Dr. Quintini if I could put it on Facebook garage sale that I was looking for a donor. I don't think he was too keen on that.

Laughter

Kyle: That was not a good option?

Dr. Quintini: Not a good option.

Carole:  We started a grassroots campaign. I’m the youth director at my church and so my pastor had asked if it would be all right to put something in the church bulletin regarding the need. I live in a very small community, 8,000 people. Most people when you go through a tragic event know what's going on and are keenly aware of your whole life story. That's when Jason came forward and offered to donate a portion of his liver to me.

Kyle: Did you think that putting something in the church bulletin was going to lead to finding your donor?

Carole: I didn't know. I prayed about it a lot that God would just guide and allow it to happened. I had resolved myself to the point that I knew if my purpose was finished here I wouldn't be provided it, and that God had some other direction for me somewhere else. I've always had that frame of mind. Even with the journey that I was on before I knew that it was purposeful. I had to resolve to the fact that my okays weren't necessarily God's okays but it was all okay regardless. I felt the same way with transplant. If it was meant to work out and it was meant to come to fruition, that it would happen.

Kyle: And it did!

Carole: It did.

Kyle: I think what's interesting is you didn't really know Jason beforehand. He is a private guy and he didn't tell you that he was being tested until the very last minute.

Carole: Yes.

Kyle: When he told you that he was heading to Cleveland Clinic to get tested, what did you think?

Carole:  I didn't believe it to be honest. I was kind of in shock I think I would say. I didn't believe it. I tried to say, ‘no we need to really know before we get excited and really think this is going to happen’, so we didn't get excited right away. Not until he'd went through all of the preliminary screening to know that he actually would. There's one thing to say that you're a candidate and then to really be a candidate, there are two different realms. That was a lot, I'm sorry.

Kyle: No, that's good. That's good. How are you and Jason feeling today?

Carole: We're both good. The best part about the whole thing is the quality of life. I don't know today if I have a year left or two months left, but the best part about living is that promises never change. The promise of my life and God's promise to me is that here's today and then tomorrow we focus on tomorrow's things. Jason and I have become great friends. He and his wife and my husband Trent and I have become such good friends. It's just a bonus that God has blended and intertwined and weaved this story so amazingly.

Kyle: You spent Thanksgiving with his family?

Carole: We did! We had Thanksgiving together. We're going to go on vacation this summer out west. We have a family house in Montana so we're going to go out together to do some fishing and hiking and all the things we love to do. It's beautiful. It's a wonderful story and I couldn't be more blessed that I get to be a part of it. I'm just one little, little piece of the whole purpose that this story is meant to share. It’s cool.

Kyle: We're going to play a little game of ‘Go Fish’.

Carole: Oh no.

Kyle: We have a fishbowl in studio. Why don’t you take the lid off?

Carole: Me?

Kyle: Yes.

Carole: I feel like Dr. Quintini should go first.

Dr. Quintini: Well, let's see what the game is.

Laughter

Carole: What’s the game?

Kyle: There are questions for both of you. Who wants to go first?

Carole: Okay, what do I do, just pick one up?

Kyle: Pick a question, read it to us, and then give us your best answer. Don't worry these are not Ph.D. questions so you don't have to get nervous.

Carole: I’m just the little teacher, he's the wizard over there.

Laughter

Carole: What's your best advice for someone facing a tough health situation? My first advice would be to turn your fear into faith. My second piece of advice would be to trust your physicians and to find physicians who are willing to go to bat for you. I always felt like these physicians at Cleveland Clinic were willing to go to bat for this girl they didn't know. I would say that same thing, find physicians who are willing to advocate for you and willing to take you on even though you drive them crazy. Also advocate for yourself. Always advocate for yourself. If you hear a no, make sure you understand what that no means.

Kyle: Why don’t you pick one for Dr. Quintini?

Carole: I can pick one for him?

Kyle: Or maybe he wants to pick it? 

Dr. Quintini: I’d rather pick it!

Carole: Okay, I’m so nice.

Laughter

Dr. Quintini: What's the best gift someone has ever given you? Carole is the perfect example. At the end of the day it goes down to why I'm a doctor and why I’m thousands of miles away from my hometown and my whole family. It’s the fact that I have a passion. The passion is to try to do my best to help people. Obviously when you have the chance to do so, and sometimes it works sometimes it doesn't, but having that feeling that the patient and the family that you care for are grateful to you and your team and your institution. That sense of peace is more than gratitude. That sense of peace is exceptionally rewarding for what we do. If I can have other patients like Carole I think I'm happy.

Carole: Aww! That was all the feels.

Kyle: Carole do you want to pick another question?

Carole: Twice?

Kyle: Then Dr. Quintini will get one more too.

Carole: There’s two so I'm going to pick which one I like better.  Oh, I like this one. If you could choose one place to go on vacation for the rest of your life where would it be? It would be Montana. That has my heart. Montana is beautiful. There's a certain peace with Montana when you get up into the mountains, high up in the altitudes at 13, 14000 feet, where you can't go anywhere else. You feel like you can just about touch the face of God and that's about as close as I can probably get in my life to actually being there. It's there that I find peace and joy and fulfillment. It softens me and it keeps my perspective. Through this battle I've been able to go quite a few times and it's always brought me back to that place when I got ahead of myself and felt like there was not hope anymore. It's just a good resolve for me. So, Montana.

Kyle: Last question.

Dr. Quintini: What's the first thing you should do after being given a cancer diagnosis? I think it's very important to find support. The moment you are diagnosed with cancer you're starting a journey. When you start the journey you don’t know what’s going to happen. You need somebody who is with you each and every single step of the way. One thing unfortunately we see sometimes is that there are very tough cases we take on and the family and friends support is not there. You really feel for the person you are caring for because you clearly understand that is not what should be. With Carole and many other patients, we are lucky because it is not just the doctor or the patient fighting cancer, it’s the whole family and friends. That's why we are in a society in the first place. That's why we have communities. We’re here to help each other. I think that is even more true when it comes to a cancer diagnosis. So find somebody that can walk with you and stand by you knowing that there will be tough times. Knowing that sometimes you're going to get upset with the people that are helping you through this. That's just a normal human reaction to fear and unknown and uncertainty. Just find a good partner and it's just important as and perhaps even more important than finding a good place to go.

Kyle: We just have a minute left. Dr. Quintini, do you have any final thoughts for us?

Dr. Quintini: Every time I see her she looks better and better so I guess that's the final thought. I mean this is an amazing story and I'm blessed to be a part of it. It's just fantastic for us and everybody has been a part of it.

Kyle: Carole, how about you?

Carole: Final thoughts? I'm just so thankful. I'm thankful to God for placing these people in my life. I don't think it's without purpose. I think He works intentionally to administer what He feels is the right thing. We didn't know what to do at that time. We were scared and anxious. God just worked His miraculousness and put Dr. Quintini and Dr. Hull and Dr. Hashimoto and Dr. Aucejo, the team of nurses and IRs. There are just so many doctors and nurses and staff involved. Jim, my transplant coordinator who I text every day, who is probably like what did I get myself into? Just everybody. That's my final thought is just thank you to Cleveland Clinic and these amazing people for allowing me to continue to live and thrive. Bottom line.

Kyle: Thank you guys so much for both being here today. Thank you everybody for listening. You can find additional podcast episodes on our website clevelandclinic.org/ podcasts, on iTunes, SoundCloud, Stitcher and Google Play.