This transcript is automatically generated.

Betsy Post 0:03
Welcome. So I’m Betsy post. If you don’t know me, it’s my privilege to be here with everyone to host this evening’s program. So excited about our first ever transplant talks. The transplant talks is going to be a series, and we’re going to spotlight a wide array of topics relevant to living donor liver transplants for colorectal cancer patients, I’m the Community Leader for the metastatic neighborhoods in COLONTOWN, so if you’re not familiar with me, I help out in the liver Lovers Lane all the way over to Station. It’s my honor and privilege to do that for our patients. If you’re not familiar with COLONTOWN, we’re an online community of over 100 secret neighborhoods on Facebook for colorectal cancer patients care partners and survivors of all stages. We’re entirely patient and care partner led, and we’re known for our work with empowering patients and truly where hope meets science. So my privilege and honor to be here with you tonight. Also, it’s my privilege to introduce Carole Motycka from Bluem. Bluem is the newest non profit in the colorectal cancer space, and I wanted to give Carol just a minute to tell us a little bit about bloom before we hear more about what we’re going to learn tonight. And I introduce the panelists, and we get going with our program.

Carole Motycka 1:22
Thanks. Betsy. So I am Carole Motycka. As Betsy said, thank you very much, Betsy. The team at PALTOWN and the team at COLONTOWN, we’re really excited about having this opportunity to start collaborating, which is what we set out to do at Bluem. We’re mission oriented in the fact that we strive to provide direct, immediate access to newly diagnosed patients, to a website that features all of you. So we look forward to this partnership, and thank you for allowing us to be part of this. Betsy,

Betsy Post 1:57
You’re welcome. Thank you, Carole. So I just wanted to give a little bit of information to kick us off on the transplant Talk series. So tonight, we’re going to hear from three, we were supposed to have four. Unfortunately, our fourth panelist couldn’t make it tonight. She sends her regrets. She hopes to join us on a future talk. So we’re going to have three metastatic colorectal cancer transplant patients from across the US. We’re going to hear about their unique experiences and insights. And each one is so unique. They each have a different journey to transplant and transplant it at a different location. So I think that that’s really important. We’re going to get a really good cross section. So one important thing I want everyone to know, we don’t have doctors tonight, so we don’t have any medical professionals. It’s just us, just our awesome patient panelists. So we don’t want to take any hard medical questions. But the good news is, is the transplant talks is a series, so our next series, our plan is to get the liver surgeons here for you so you can ask those medical questions. But tonight, we really want to share the patient experience. That’s what COLONTOWN does, right? So basically, here we’re going to share their experiences, and if you have questions, please send those to me through the chat. So right now, the chat is defaulted, probably to send to everyone, but if you do have questions, you could send those to me privately in the chat. You could send them to everyone if you want. They might get lost. You could definitely send them to me for the end, and I definitely want to open it up to Q and A for you guys at the end. So with that, I really want to introduce the stars of tonight’s show, which are our esteemed panelists. I can’t thank you enough. On behalf of COLONTOWN and Bluem for joining us tonight. We so appreciate your time. Everything you’re doing to pay it forward in this community. So joining us tonight from Virginia is Kristie. Kristie joins us from Virginia. She was actually the first metastatic colorectal cancer patient to transplant in the Commonwealth of Virginia, and her story is one I think, that really showcases what an empowered patient and a really tremendous forward thinking medical team can do next. We have Scarlet. So Scarlet is joining us tonight from South Carolina. We love her twang, so she has a really unique story to share as well about how she transplanted in Rochester, New York, and kind of made her way there from Sloan Kettering. So she also has a really interesting story, very different. And then finally, Carole, I’d like to call Carole the OG of the living doner liver transplant. So she’s our OG. She joins us from Connecticut, but she’s a native of Ohio, and unfortunately, she’s a Buckeye fan. So that’s Carole. Carole transplanted at the Cleveland Clinic in April of 2018 that made her one of the very first patients to undergo this cutting edge option for metastatic colorectal cancer. So we’re really pleased to have Kristie, Scarlet and Carole. And the first thing we’re going to do is we’re going to give each one of these panelists the opportunity to tell you more about themselves, a little bit about you know, their background with cancer. Um, so we want to get to know them, and then we’re going to start asking some questions. So Scarlet, if you wouldn’t mind if you could kick us off and share with us your story.

Scarlet Kasperbauer 5:10
Hi everybody. I’m sorry if I start reading my notes. I am a little bit nervous. I was 29 when I had my first colonoscopy. Like she said, I’m Scarlet. I’m from South Carolina, and I have been here all my life, and I had a transplant in Rochester, New York. But little bit about how I got there, I was 29 when I had my first colonoscopy. I’d had never any kind of medical procedure of no broken bones, no stitches. I’d never been in the hospital, nothing, and just out of the blue, I started having some abdominal cramping. There was a lot of signs at the beginning, but as most young, 20 something year olds, I brushed it off to, you know, I swept it under the rug. We can discount anything, but looking back, there was a lot of signs that I should have seen. But nobody talks about colon cancer. Who wants to talk about poop? So in April of 2014 I had my first colonoscopy. I was 29 he came out. He said, you have cancer, and you’re going right now for more tests. And sure enough, I was diagnosed with stage four colon cancer with Mets to liver. They immediately did a colon resection. However, there was nothing they could do for my liver, but because there were too many and I started chemotherapy in June of 2014 and since June of 2014 we have done chemotherapy, radiation. I had microwave ablation, more chemotherapy, some more radiation, and you name it, we’ve done it. I was never a candidate for surgery. I’m trying to think. And 2019 we had pretty much ran out of options, and we had run its course with all of the different treatments. I still was not a candidate for surgery. We were very hopeful and a last ditch effort. We went to Sloan Kettering in New York and met with Dr. D’Angelica. And while he was unable to help me, he said, you actually might be a candidate for something new. We’re trying, and here we are.

Betsy Post 7:38
Thank you. Thank you so much. That was great. Scarlet is going to be sharing more on the Q and A she has a lot more to this story. And next, Kristie, we’d love to hear from you. We’d love to hear more about your story.

Kristie Finchum 7:54
Hi, I’m Christy Finchum. I live in Mechanicsville, Virginia, which is near Richmond. At 43 years old, I started to get some symptoms. And of course, I didn’t know they were really symptoms for this at time, I’d never had anybody in my family with colon cancer. And of course, I thought that colon cancer was for older people, which is completely not true. Unfortunately, I worked at a school, and there were a lot of people out sick with stomach viruses, and I had about over a few months thinking that I just kept catching germs. And I normally wasn’t a sick person, but I was having just some really bad luck, unfortunately. Well, the stomach viruses that I thought I was having, I would fall asleep on the bathroom floor because I was so sick on my right side. So when I wake up the next morning, of course, didn’t know it at the time, but my rib cage was hurting, which was my liver. Unfortunately, I told the doctor, hey, I fell asleep on my side, and that’s why I’m hurting. So can you prescribe me some anti inflammatory so I had already self diagnose. You know that nothing was wrong with me. That was all it was. I was having issues with my stools. Of course, I thought that that was hemorrhoids from having three children. There were all kinds of excuses, and I was busy taking my kids to soccer and show choir and everything else under the sun. They were in sixth, eighth, sixth. Eighth grade, eighth grade, and then sophomore in college, so pretty busy and then working, so ended up in the hospital with the pain they thought I needed going my gallbladder out. I was really nervous and didn’t want my gallbladder out, but as it ended up being way worse than having my gallbladder out, I had stage four cancer in innumerable nets to the liver. I hit rock bottom. I knew that something needed to intervene. I had always believed in God, but I think that just really my faith just really got strong, and I knew that he was the one that was going to have to help me through this, of course, with the people that he put in my path, medical. Professionals and all the treatment as well, but he really pulled me out of it. Was there with me through it all. I had chemo. I was told I could never have surgery, but I was able to get to where I had colon surgery. I was told that I was going to have liver resection surgery right after, but unfortunately, after the colon surgery, I had some more growth, and the doctor didn’t feel comfortable doing the liver surgery at that point, because he would have to take too much because I had met some both sides, back to chemo, more chemo. I had good response again, and had the liver resection surgery. I felt great about it. Unfortunately, the scans after showed once again, somewhere in that said had popped up. So I just kept believing, kept believing. And then it was funny, because at my appointment where I was in the in there with the surgeon, I mentioned transplant, because I learned it from this group. And I just thought, hey, this is something that’s, you know, crazy, but I’m just going to mention it to the surgeon, and he said, You know what? He said, it’s happening a little bit, but we’re just not there yet. So of course, back to chemo. Little did I know that they’d be knocking down my door in May, asking me to have the surgery. So I didn’t even need to pursue it. They they came to me, and I know God works it all out for me. And of course, there’s more to that story that I’ll probably tell you later, but don’t ever listen to the word incurable, because I was told that and that really I felt defeated. But it’s not true. It’s just not true. So

Betsy Post 11:37
Thank you so much for that. I know a lot of people listening definitely, I’m sure these stories they’re hearing are really resonating right now and then, last but not least, we’re gonna ask you, Carole to share a little bit more about your story.

Carole Motycka 11:52
Yeah, thanks, Betsy. So Betsy told me I only had like two minutes, because she knows how I like to talk, so I thought I would start when I was five. (laughter) Betsy, that’s okay, right now, I did, all seriousness, my story actually did start when I was five years old. I was diagnosed with a congenital heart defect, and I underwent heart surgery for that defect when I was a mere five years old. Little did I know 42 years later, fast forward, 42 years later, after losing my father in a car accident, after my heart surgery, that I would find out that I had a hereditary form of colorectal cancer that was caused well, it came from the paternal side, which my father took with me when he passed away. So he took the information so we didn’t know. Subsequently, I’m a big advocate for screening and for learning about your hereditary conditions that are relative to colorectal cancer. My sons and lot of family members that had were diagnosed with colorectal cancer or precolorectal cancer situations due to my diagnosis, I’m really thankful for that, that we were able to definitively just define what was going on with our family and save lives. So I didn’t have any symptoms. I was 42 healthy, as as could be hiking mountains and had a little pinch nerve in my shoulder, ended up in the emergency room. I was initially told I had six months to live, and I’m pretty tough. I’m pretty pretty I’m a I don’t take no for an answer, and so I went to bathroom myself. I learned how to advocate, I learned how to ask questions, and ended up after 19 surgeries, a HAI pump, 13 chemo treatments, I had liver drains due to my biliary stenosis, I had a liver aneurysm, and ultimately landed me at the opportunity to transplant at the Cleveland Clinic. It was something that they were exploring at that time, and it hadn’t been done to anybody, and I had the opportunity to go out with the bang or survive another day, and I had reason to be become okay with both of those things. And so I decided, let’s go for it. And I became the first person in the United States that Dr CEA transplanted at the Cleveland Clinic after metastatic cancer diagnosis. I’m glad to be here. And I think we’ll talk about more of our, you know, journeys, you know, later in this conversation.

Betsy Post 14:47
Definitely we will. So I have some preprepared questions, so we’re going to walk through some of those. I actually had some people that submitted some, and they were in line with all the questions we came up with. And of course, we will open it to Q A but hopefully these are going to be some questions that everyone has. So we’re going to start off actually, Carole, I’m going to give this to you, but I actually want each one of you to answer, if you would please, what was the status of your cancer at the point transplant was a consideration?

Carole Motycka 15:22
Um, that’s a great question. Betsy, so when I got to to the idea of having transplant, I had just had the HAI pump, and I’d had a six month treatment of a six months of the treatment of through the pump. And prior to that I had had a three stage resection and removal of my right lobe because I did have disease on both sides of my liver at diagnosis, and so when I transplanted, I had no evidence of disease at that time.

Betsy Post 15:53
So your transplant was due to a sick liver, if we’re not being too medical,

Carole Motycka 15:58
It had – it was sick from all the chemo and all the toxic chemicals that you know are associated, as we all know, with chemo treatments.

Betsy Post 16:09
All right, Kristie, we’d love to hear just a little bit, I think you told us a little bit, but if you could just tell us just a little bit about the status of your cancer when you decided to move forward with transplant.

Kristie Finchum 16:22
I was still in chemo, and unfortunately, it was the third time I was on chemo, and the chemo didn’t seem to be doing as well as it had done previously. They were having to tweak it. My platelets would be low. They were having to take things out, take Avastin out. They were have to lower doses of different things so I could tolerate it. And it still seemed that my CEA was creeping up and there was slight amount of growth. My surgeon actually considered me stable. But if you would ask me at the time, I didn’t think things were going well, so timing was all perfect, yeah, but I mean it definitely everything was active. And if I had, you know, laid off of the chemo at all, it was growing. So okay,

Betsy Post 17:09
I think that’s important for everyone to hear. I think there are a lot of misconceptions about, you know, can you have active cancer in the liver and maybe it’s not responding as well to chemo? So I think your story is really important for people to hear that and Scarlet, if you could just tell us a little bit about the status of your your disease at the time that you decided to move forward. I know we heard about it, but I’d love to hear a little bit more.

Scarlet Kasperbauer 17:46
So my cancer was actively growing, and they were just trying to slow it down. And in that in May of 2019, we that’s when we started getting pretty aggressive, and I checked all the boxes for a liver transplant, except for the fact my cancer was not stable, and before I could even be considered, they had to get really aggressive. So they started throwing everything at me until we were able to get to a point that the transplant was even going to be an option for us.

Betsy Post 18:29
Thank you for that. I’m going to jump ahead here just a little bit and ask about after transplant, or, you know, I know people have questions about that as well. We’re just going to hop around tonight, and I have questions coming through chat, so I know people are interested in it. So hopefully that’s okay. So after you had your transplant, I know folks would really love to hear about the recovery. So people really want to know about the recovery from transplant, what that looked like for you, and then also, if you wanted to mention just the time that you had to spend in the hospital, and then also how your donor recovered.

Scarlet Kasperbauer 19:19
So the first month was hard. I was actually in the hospital for 22 days after my transplant due to some little things that came up. And I know we’ve kind of gone into the fact that I’m in South Carolina, and I had my transplant done in New York, so that a living donor transplant for someone who has secondary cancer, which is what colon cancer was, for me, is not an option here in South Carolina. We have a great Transplant Center here, but that’s not something they’re doing here. When it was first broached, there was only four places in the USA that were even given to me as being on the radar. So I was 15 hours away from my home and my family, which was very difficult. It was hard, but I have to tell you, I would do it again in a skinny minute, simply because, as most of you know, you know how hard chemotherapy is, you know how hard radiation is, and as hard as those things are, the transplant was just as hard, but the the life that I’ve had after it has made every single moment worth it. 100% 100% I mean, the transformation is insane. Thank you.

Betsy Post 20:46
Kristy, do you want to tell us about that? For you?

Kristie Finchum 20:50
Yes, my situation was a little bit different, because it wasn’t a it wasn’t the normal living donor situation. I actually was provided a donor, and again, that’s just a miracle, so I’m very thankful for it, and that’s part of the reason, too, why I knew it was the choice for me, it was just, it was actually just a no brainer. I knew I was going to go through the transplant, and that was my way to being cured. But it was actually a three person scenario, what was called a domino transplant, and it hasn’t been done very often anywhere. So what happened was there was a 30 year old woman who had a condition called FH, and it’s called familial cholesterolemia. It’s basically a hereditary high cholesterol, extremely high cholesterol. But she also had a metabolic disorder where her body couldn’t process the medication for the cross cholesterol. So she basically had had high cholesterol since birth, had had heart attacks, had had her arteries were just just tiny and constricted, and she had all kinds of trouble. So she needed a liver. So her sister donated her two thirds of her liver. She received her sisters part of her sister’s liver. I received my donor’s entire liver, and I did inherit her cholesterol disorder, so it’s a little bit different, but that’s part of my reason in explaining I was in the hospital a lot longer. I was in the hospital three weeks, and I think I would have been out sooner, except I ended up having a clotted hepatic artery, and they had to do a second surgery on me, where I had to be reopened completely, back up. And I really think I would have been out sooner, but I’m three weeks and as far as the recovery goes, honestly, I look back and I didn’t feel like the pain was any worse than my liver resection. I think my problems came from all the medication that I was taking and, of course, not feeling wellness in the hospital, not eating. I lost about 20 pounds, but, you know, I do it again in a second, so feeling great now it’s been seven months. I think the medication for me was the biggest problem.

Betsy Post 23:01
Yeah, and we’re definitely going to talk about medication. And I’ve had several people send questions about medication, I see that we’re definitely going to go there. Carole, I just wanted to ask you about your recovery time in the hospital. Also, how your donor,did?

Carole Motycka 23:18
I’ll just give you a minute review. I spent 14 days in the hospital. My donor spent three, oh, he’s like a Titan. I’m fortunate that my donor situation was I put a note. I was the youth director of my church for many years, and we put a note in the bulletin. My pastor put a note in. And my donor was through my church, a gentleman that I’m friends with at the congregation. He did really well. He recovered very well, and we did, however, I think it’s important to note Betsy, that one of the, one of the this rules, I will say is that you do have to remain in the community for for a time being. So my donor spent a week and a half after transplant in Cleveland to make sure that everything was okay, and then I spent about a month in Cleveland after I was released from the hospital, just to be under advisement. There are a lot of and I can elaborate on this later, but there are a lot of doctor visits post transplant, and they want you to remain very close to them, so that if there would be a situation that you can be tended to very quickly. But I didn’t have any complications from surgery, and I would agree with the other girls, recovery and the feeling of transplant, although it is the most aggressive thing that you can do to your body. The recovery was quite similar to, you know, having the other surgeries that I endured as well.

Betsy Post 24:51
Awesome. Thank you. So I want to definitely talk about donors. There’s a lot of questions about how to find a donor and how. To deal with that. And I also want to talk about medication. People definitely have questions about the meds So, and I know all three of you have different experiences with meds, so we’re going to do the meds question, and then after that, we’re going to talk about donors. So I’d love for everyone to know just about the medications that you’re taking post transplant and how that’s changed over time. And I’m going to remind everyone, Carole is the longest so post transplant, she was transplanted in the spring of 18. Scarlet is about 14 months out, and Kristie is, what a seven months out. So when you’re hearing this information, know that this is going to change over time. There’s a lot of misinformation out there on this, and it’s something that I think everyone should hear. And again, Carole being 2018 kind of far out. Scarlet at 14 months. Kristy at seven. So you’re going to hear a little bit of differences here. And Carole, since you’re on the floor, you can go first.

Carole Motycka 25:52
So medication wise certainly is a huge question, because yes, we have cancer. So what does that look like when we’re taking immunosuppressants? Right? So that was a big concern that I had started out taking, I believe it was like 30 pills a day. It was ridiculous. But in three years and again, like you said, to your point, I’m three years out, so it looks a little bit differently for me. I’m very fortunate to be down to two, two transplant medicines. One is a bacterium, which is basically just a protector for an antibiotic, if you will, to keep me clear from any simple virus that I might get. And the other one is something I take called everolimus, and it’s, it is the immunodepressant that I’ll be on for the rest of my life. Other than that, I do take a Lovenox injection twice daily, because I do have some post transplant thrombosis. Other than that, I take a baby aspirin and then my typical vitamins and medicines that I would always take. There have been no limitations and no restrictions as to what I can take.

Betsy Post 27:02
That’s a really great I know people like to ask that question a lot so, and I think I just want to clarify before we go to Scarlet that you are no evidence of disease the whole time since you’ve transplanted.

Carole Motycka 27:15
Yes, correct, correct.

Betsy Post 27:17
So I know there’s a lot of information out there. People think you’re going to have an immediate recurrence. I know each one of them are going to talk that, but I think it’s really important to know she’s had no recurrence of her disease, and her meds have really, you know, weaned down over time, so to speak.

Scarlet Kasperbauer 27:35
Actually kind of go along with what Carole said. I started out taking, it was about 38 pills a day whenever I left the hospital, and at the time, I was like, Oh my gosh, this is going to be insane. It was a lot, but they help you get on track, and then as your body heals, you get to come off of almost all of them. Now here we are, since October of 2019 and just like Carole, I only have to take two anti rejection medications, and one is the same as Carole, the Everolimus, and then the other one, I actually take cell set instead of the back room. I was on the back room as well. But for each person, it’s a little bit different for everybody. So it’s, I will tell you, the pills are nothing compared to the chemotherapy that we have had to endure. So I’ll take those pills any day. But it definitely does get a lot better, and there is no limitations, like Carole said, we do take just our we need to let all take a Tylenol. We do not take ibuprofen, because, of course, we don’t want to put any additional stress on our liver. And I am a huge advocate of Benadryl. So I love my Benadryl

Betsy Post 28:46
I just want to make sure it’s clear so you’ve had no recurrence of disease. So even though you transplanted with active disease that was not necessarily well controlled, you’re still even with the medication, no evidence of disease today,

Scarlet Kasperbauer 29:09
No evidence, no evidence whatsoever. I give all the glory to God, because for the first time since I was diagnosed, I have been able to hear that there is absolutely no evidence of disease.

Betsy Post 29:23
Great, awesome. I know we’re all happy for you. And then Kristie:

Kristie Finchum 29:30
Just like the other girls, I was on basically a meal of medication. By the time I took on medication, I didn’t even want food because of course, I was taking just like one pill with sip of water. Well, then I started to learn to chug like 10 pills with a sip. So I’d actually be able to eat and have room for food. But yeah, I started out with 30 something pills a day. Now I’m on three different anti rejection medications, which is about eight pills total for that. And then I also take the Bactrim, and then I take the baby aspirin, aspirin every day. It I did have some issues with my stomach. I still am. I know that. I don’t know about the others, but if I don’t have a little bit of food in my stomach, at least, and sometimes if I do just have a little bit, I still get nauseous from the medication. So I’ve learned to make sure I eat something before I take it. But yeah, it’s just balancing. And I look forward to only taking a couple a day and then

Betsy Post 30:31
– No recurrence and a clean colonoscopy yesterday, actually, right?

Kristie Finchum 30:39
Yeah, no recurrence. I’ve had two sets of scans so far.

Betsy Post 30:48
We’re getting a lot of questions, also about insurance, financial assistance, things like that. So I definitely am going to get to those questions as well. But I guess if you want to speak to that, since you’re on the mic already, I’d love to just know, did you have any issues with insurance approvals or anything like that, and did you have to deal with any sort of financial assistance issues, or was that an issue for you?

Kristie Finchum 31:17
Everything went amazing for me, luckily, when my husband I’m on his insurance through the county, and when he was choosing his insurance, of course, he picked the highest plan, which at the time when you don’t need it, and you feel like you’re healthy people, you wonder if you’re wasting money, but you’re absolutely not. Because when I looked at my explanation of benefits, of what it would have cost, it was absolutely crazy, I want to say on almost 2 million or something like that, for everything, but no, no problems with our insurance. But of course, we’ve got one of the better ones, the higher tier plans. No issues.

Betsy Post 31:53
Thank you. I know Scarlet, this is definitely a question that you can talk to, because I know you had to pursue transplant out of state, and I know that there were some issues, so I know that’s something that you could talk to as well.

Scarlet Kasperbauer 32:08
Absolutely. Thank you. So as we’ve talked about, we actually had to go to New York, and South Carolina doesn’t offer what we needed. Thankfully, I was on very good insurance, and they were able to cover a lot of it however, going to another state that was very difficult. And I know I saw someone asked about medications, even now, there is different programs out there that you can apply for, especially these medications, the medicine companies, you can actually go to them, and they just want you to register with them, and they’ll actually cover your medication in full. One of the drugs that I take, they are covering it until my insurance actually kicks in. I know Betsy and I have talked about this in the past, because there is some questions about how to get everything covered, especially whenever you have to go out of state, everyone’s insurance is different. But the first thing I would do is write a letter to the Director of Transportation in your insurance department, keep calling. Find an advocate in your insurance company. Share your story, talk, talk, talk, talk. People want to help. It may take a lot of phone calls. It may take a lot of letters, contact your state legislators, be prepared to be vocal and public about your cancer. I mean, this, it is, it’s a war you’re fighting for your life. And we, we had to get very vocal, because going to New York, my insurance company here in South Carolina did not want to pay for that, because that’s going to cost a lot of money, and like Christie said, it is very expensive, but it is worth it, because we’re fighting for our lives, and I don’t really think you can put a price tag on what your life is worth. So you know, I would just start your own media talk about what you’ve got going on, because people want to help you.

Betsy Post 34:22
It’s really helpful. And this is being recorded so everybody can go back and listen to each piece and Carole. I wanted to also send that question over to you as well as quite I know that you specifically you and I had talked about coverage for your donor. So if you want to speak to the the insurance, financial assistance, donor coverage?

Carole Motycka 34:46
Yeah, so a couple great things my you know, like the girl said, transplant is very expensive, you know, work with your provider. I’ve written letters for people, and I’d be happy to do that. A lot of times you get a first and I. And then you had to, have to go to bat. And so, yeah, it’s expensive. I think mine was upwards of $2 million I had great benefits. I didn’t have any problems. The only things I would point out for me, I’m a little bit different. When I had my transplant, it wasn’t it I had, I didn’t have any disease, and so they had to look at it a little bit differently. And so mine was a little bit easier to get done just because I didn’t have the reoccurring disease. So I kind of set that set me out a little bit differently. The other thing I would tell you is, a lot of people ask me about the donor and, you know, like, what does it look like for them as far as cost goes? You know, there’s they’re they’re committing, they use their organ, but then they have to pay for it. And the answer is no. Most health insurances, and I would say, reach out to your your health insurance, but most health insurances as a part of transplant that donors fees are paid for. And when I say donor fees, I mean the health fees. I don’t mean the the the living out, you know, in Cleveland or wherever they need to stay. So as far as that side goes with it, you know, there’s for, in my case, there was a really great facility called the transplant house, and they open up apartments in the community to transplants patients and for their donors, which is really great resource. The most important thing, I would say, as far as resources go to find out. Help is make sure you ask for a patient navigator at your hospital. They know all the ins and outs of all those things that can help you, even in the post transplant situation, I know that my ever is, for example, it costs about $6,000 a month. But like, you know, like the girls said, there’s ways to find people that can help, but the best way to do that is to find, you know, to use that patient navigator, because that’s their job. That’s what they’re there for. They’re there to help you through it.

Betsy Post 36:51
Wonderful. I know that’s helpful, because we got several questions on that, and I’m just going to put it out there. Certainly we’re open to your ideas about the Transplant Talk series, and if you feel like this is a need that where we really need to talk about the finance, insurance, things like that, that’s something we can definitely put together for the future as well. We can expand on all of that. Just a couple other things I have here. I’m definitely paying attention to the clock. Does your transplant team work together with your oncology team after transplant?

Carole Motycka 37:26
So quick answer, absolutely. The really great thing about the Cleveland Clinic and large institutions that are doing transplant is it’s a very largely, very largely a collaborative environment, and so you have all eyes on deck. You know, they’re constantly reviewing and looking at you from all different it’s a holistic approach, a multi disciplinary team. So you’re not just involved in transplant. You have the entire team looking at you, which is something is very important as a transplant patient, especially in our setting of colorectal cancer.

Betsy Post 38:01
Kristy, a question for you. I might actually throw this to everyone, but what advice would you give to anyone that’s watching on making a decision about transplant? What advice would you give them weighing this as an option? Sorry,

Kristie Finchum 38:18
I would. It’s okay. I would say to definitely do your research first. The decision is ultimately yours, and I know the way my plan worked out, the transplant fell into my lap. Mine was kind of a miracle situation. But don’t let anyone pressure you into not doing it or doing it. I know my family was really worried when they found out that it was an option for me, but I knew that it was the way for me, and they came around and, you know, everybody’s so happy that I did it and through everything we had to go through. I definitely do it again in a second, but it ultimately is your decision, so make sure you keep that in perspective. It is scary, though. For other people, you know, they’re worried about you and they love you.

Betsy Post 39:07
Absolutely. And same question for you, Scarlet.

Scarlet Kasperbauer 39:14
I think it’s something you really have to pray about, and it do your research, be your own health advocate. I’m kind of in the same situation as Kristy. This was our only option. We didn’t have any other options. There is a lot of different stuff out there and but transplant might not be for you. It’s not for everyone. Everyone is different. Educate yourself. Liver resection, Y-90 pump, partial lobectomy. They have a lot of new inhibitors come in to market all the time. Other forms of treatment. There is a lot to consider, but be your own health advocate. Find a doctor who is going to be honest with you, but willing to advocate for you and fight. Find someone. Who wants to fight for your life as hard as you want to fight for your life, I know one of the questions was, does your oncology department work with your transplant team? I am in a completely different bracket than what Carol was in, because my oncology team is here in South Carolina. My transplant team is in Rochester. They’ve never met. They’ve spoken on the phone, but the the key for them both is they want to see me thrive. They want to see me live, and my well being is at the center of everything. And they have done everything that they could do as a team, even though we are 1000s of miles apart. They’ve done everything as a team to try to get me to that point. And you want to be a part of a team who wants to see you thrive. So if you’re with an oncology department who’s encouraging you to to live and we want to help you, you know this was my only option, having this transplant was the only way I could survive.

Betsy Post 41:07
And I have one follow up question for you, actually, because we heard about Carole’s donor that she found from church and using a flyer and word of mouth, Kristy really had a miracle. I don’t think I’ve ever heard a story like that. It’s really amazing. So I want to hear about your donor. Could you tell us about your donor?

Scarlet Kasperbauer 41:24
I forgot to mention my donor. I’m terrible. I was I’m so nervous. Y’all, I’m so sorry. So my donor, I come from a huge family, and I really thought my donor was going to be one of my siblings, and I had no idea what all they look for when it comes to finding a donor. I mean, like, literally, can they fog a mirror? I think they could be a good donor. It sounds good to me, but really, they check all kinds of things, and we had gotten to a point where we were running out of time, and everyone wanted to help. So many people wanted to come forward and help, but it really got to a point where I said, Hey, I’m putting this on social media. And that’s exactly what I did. I put it on Facebook, and by the first evening, I think it had been shared with over 50,000 people. It was incredible, and my donor is actually a City of Columbia fireman here in Columbia, South Carolina. And with the way it works out, I really couldn’t be involved in the donor side of it, just because of all the legal stuff that goes on behind the scenes. So I put it on social media, and I said, Hey, here’s the need. I need help. And if you feel led, and if the Lord lays it on your heart, and this is something you want to do, here’s Rochester son number, here’s my doctor, here’s my blood type, and I need you this year as soon as possible. And you know, I didn’t really know who applied. I didn’t know who wanted to help. I didn’t know who they were. And one day, whenever I was in Rochester for my post workup, I had someone touch me on the shoulder, and I turned around and it was Chaz Cannon, who is a firefighter here in Columbia, in Rochester, New York. And he’s like, Hey, Fancy meeting you here. And unbeknownst to me, he and his wife had gone up there, gotten approved, and had agreed to donate 70% of his liver to me. And because he was a firefighter, usually the recovery time is only three months. However, since he was a firefighter, the recovery time for him was much longer. Was actually six months. So it was just incredible the amount of outpouring and love from the community. When I say people love to help. They really do. They want to get behind you. They want to help because most of the time they’ve either been in a similar situation, or someone they know and love has been in the similar situation,

Betsy Post 44:14
Absolutely, and I know Carole’s story is very similar. I think she didn’t have any shortage of people coming forward to help her. And I don’t want to speak for Kristy, but I also know when Kristie started this, even her 16 year old daughter wanted to test so, I mean, I think guilt with a donor, people feel really bad at asking, but it’s really I think people are called to do it. I think it’s something that they want to do. When I talk to transplant patients. I mean, it seems like the donors, I mean, I don’t want to say it’s the easiest part, but it just seems to really fall into place. So I see that it’s 8:54pm, I feel like I’ve asked, like most of what people have wanted. I’ve tried one other question just came in, and that’s, are there any restrictions, such as lifestyle or food? Food after transplant. I’m going to give this one to Kristie.

Kristie Finchum 45:04
I know that I can’t have grapefruit, or there’s other types of these strange fruits. I don’t like grapefruit anyway, but there are some things they have effect on the blood work. So it’s hard for the doctors to tell whether you’re having rejection, or, you know whether the levels of everything that you’re taking are sufficient. I’m sure Carole would probably know more about that. I’m still kind of a newbie with that, but I know I can’t do that. Mine told me not to drink. I’m not much of a drinker anyway, so it didn’t really matter. But maybe the two of you have had something to drink after and it’s okay, I don’t know, because I’m still new.

Betsy Post 45:43
Carole, yeah, you want to, you want to speak from your perspective three years out, especially three years out and well recovered about any diet or lifestyle restrictions.

Carole Motycka 45:54
So star fruit, grapefruit and those are my only two things. As far as limitations go, I lead a completely healthy lifestyle. I hike and climb mountains and do crazy things. Jump from, you know, I, you know, do crazy stuff. My doctors actually tell me, don’t tell them until I’m done. But yeah, no restrictions. What was my other what was the other part of the question?

Betsy Post 46:20
I want to shift gears, actually, to talk about how you’re being monitored for a recurrence. So you know, if I would love to know how each one of you are being monitored, if you’re being monitored differently, or is it similar to what you were maybe doing in the past with regard to scans and things like that?

Carole Motycka 46:40
Yeah, that’s a really great question, because it does look totally different. And I know that, you know, we, you know, Betsy, like you said, that the time limit here is and I want to hopefully give time for questions for Q and A at the end, but I will, before I answer that question, I want to preface this with, I am an open book, and so I you can call me anytime you can find my information on, you know, Transportation Station. I’m on Facebook. I’m on Instagram, you know. So, just so that you’re clear, I this is my job. I want to help people get to this point. But going back to what they said, this isn’t the last this isn’t the first step. Please understand, it’s the last step. There are so many opportunities to explore before you get here. This is the last step. So, you know, speaking on, I just kind of wanted to, you know, throw that in to the mixing pool before that. And then you asked me, what was your question that you asked me, oh my gosh, I’m losing it.

Betsy Post 47:35
So someone actually asked if you have brain fog. So here we go. No, I’m just kidding, maybe a little bit. I don’t even have an excuse, and I have to think about it for a second. What was I saying? Somebody has to remind me now, yes, how you’re being monitored. You guys see my list here. See, I got lost how you’re being monitored for recurrence of cancer or liver meds or anything like that.

Carole Motycka 48:03
Yeah, so monitoring looks a lot different. I do blood work every week. Um, I do a CEA to CA19-9 every month, and then I do my scans, um, every three months at this point, and that has been the same since four months post transplant, before that, prior to that, they did CT scans like all the time. But then now it’s every three months.

Betsy Post 48:32
Thank you.

Scarlet Kasperbauer 48:36
So mine is sort of similar to Carole’s. I actually have blood work done once a month, and I used to have to go every a couple times a week. And then we’ve gotten down to just once a month, and they check my CEA, I am a true tell all with the CEA. Some people are some people are not. If my CEA number is going up, my cancer is growing, so that’s some good indicator for me. And we have scans every three months, and they just closely monitor actually have a appointment tomorrow. I gotta go get my port flushed. Still have a port and oops, very closely monitor you. I know some people are worried about cancer coming back after the transplant, and I really have to say, and I’m sure the other girls feel the same way. We are so closely monitored, it really is not something that I stress out about, because I know that even if it does pop up, they’re going to nip it in the bud.

Kristie Finchum 49:36
Yeah, same, same situation every three months. For me, they alternate. I get MRIs every three months, and then they alternate CT scans or PET scans every other Oh, on the CEA, I’d get the blood work done every month. It used to be what it felt like twice a week, but I graduated to the every month now. So. Yeah, I know they checked the CEA for me as well, and that’s a tell tale sign for me too. It was point five the last I checked and was up to 276. So yeah, they’re just really on top of things. Just always asking me a million questions and just probing me everywhere, and I’m getting my port flush tomorrow too. Yay.

Betsy Post 50:28
There were a couple questions on here that were slightly more medical in nature, so I will take those offline. I’m not trying to pump them. I do have someone that can help us answer those. I do want to get those answers for you, but I want to make sure I run those by a transplant surgeon, just to be sure and safe. And we are, if you didn’t hear that at the beginning, this is a series. We’re going to do a variety of topics, and we definitely plan to have some liver surgeons on here when we can. I see that we’re right at the nine o’clock Eastern hour. I want to do a final call for each one of the panelists just to see if they have parting remarks, and then we can stay on for a couple minutes after that, if anyone wants to come off mute or send more questions in chat. So I’ll let each one of the panelists kind of give parting remarks, and then we can take a couple more questions through chat or off mute, if you need to go, we understand. So thank you so much for coming. I really hope this was helpful. So let’s do our parting remarks, and then we’ll take Q and A

Scarlet Kasperbauer 51:39
Thank you so much for having me. I really appreciate this time. I really enjoy getting to share my story. And if we’re able to help just one person, then everything that we have been through has been worthwhile. It just takes one. I do believe this procedure, this surgery, will change lives. It will save lives. You have to be prepared to advocate for yourself by any means necessary. Just like Carole said, my life is an open book. We’ve been doing this. Our cancer journey has been for seven years. We have actively been fighting cancer for six and if, if you have any questions at all, I can only speak to what I’ve been through, and I can tell you about my situation, and not everyone is the same this you know, everyone is going to be a little bit different, but I hope you know that we’re here for all of you.

Betsy Post 52:35
Yep. Thank you so much.

Kristie Finchum 52:37
Thank you. I’m an open book. Anyone can friend me. You can read all of my posts. You can ask me questions, lots of chemo surgery experience, you know, but it’s like Scarlet said, Everybody’s different. I feel like there were so many other details to tell. And of course, I’m just shaky and nervous. And, you know, forgetting to say a lot of important information. And one thing I did forget to mention was I was MSI stable, wild type with KRAS. So I don’t know if that’s important to anybody, so really I didn’t have a lot of targeted treatment options. But yeah, and I want to thank Betsy too for inviting me and for putting it all together.

Betsy Post 53:16
Oh, thank you. You’re welcome. It’s my pleasure. It’s my honor. Thank you so much. I can’t thank you all enough,

Carole Motycka 53:25
Betsy. So my closing remarks are basically, you know, thank you, Betsy, for allowing Bluem to collaborate here. You did a wonderful job putting this all together and bringing the this into a series, a series that’s very important as far as medical advancements, and that pushing the needle forward the trajectory of medicine. I think that, you know, if we think about the the the long term, and the idea of moving forward with disease treatment, we consider things like this when, you know, five years ago, we didn’t even understand immunotherapy, and even one year ago, we didn’t understand CT DNA and liquid biopsy. So if you think about this, you know the next frontier could be saving lives. Looks like hard organ transplants. I’m really excited that I was privileged enough to be part of even a portion of affecting someone’s life and affecting the trajectory of how they looked at things. So I would encourage you with that said, to really, really be an advocate, knowing that you have to search for the answers. You can’t just sit back and allow life. You allow Your treatment to happen. You have to be engaged. You have to be educated, and I think that you have to have access to information. I think that’s what bloom and what COLONTOWN Both provides. I’m happy to be able to collaborate in this project together. And then finally, I would say again, I am an open book as well. You can find me here on Facebook anytime. Look me up, Friend me, message me. I will help you to the best of my abilities with anything I can as a resource to get. You the access that you need to care.

Betsy Post 55:04
Thank you guys so much. I don’t think I see any parting questions, other than, can you get chemo if you do have a recurrence? And I did answer that because I know Yes is the answer, and I know we have to go it’s 9:04pm, I don’t see any further questions, but I will tell you again. This is a series. This series is for you. We’re doing this for you. So if you have ideas, please send them to me. You know, shoot me a private message. Feel free. I will try to make it happen. Carole and I are collaborating a lot. Scarlet, Kristie, I know would come back and help us again. So we’re here for you, and definitely, we have more of these in the works, and we’ll be in touch. So thank you all so much for coming. We really appreciate it.