Fighting--and Winning--Against a Rare, Deadly Cancer

Show Transcript

A Deadly Cancer: Fighting Back and Winning

[00:00:00]

[00:00:00] Bob Gatty: There's a horrible deadly cancer that not many people know about. It's called cholangiocarcinoma. We learn a lot about that today from Jan Meyer who lost her mother to this disease. And has been fighting cholangio herself for a long time. 

[00:00:20] Jan's a retired, registered nurse and was diagnosed with stage 4-2B intrahepatic cholangiocaarcinoma in February, 2018.

[00:00:33] That's five years ago. She underwent a liver resection and then received chemotherapy for six months. She's doing well now and she's spending her life helping to raise money and awareness for cholangiocarcinoma research. Now on May 20, Jan and her husband, Dean, will hold their fourth annual 5k.

[00:00:57] It's called The Quack Out. That's quack out Q U A C K, quack out Cholangio 5k Run Walk to Crush Bile Duct Cancer, with all proceeds earmarked for research. Janice, welcome to Lean to the Left. 

[00:01:17] Jan Meyer: Oh, thank you so much for having me today, Bob. I really appreciate you helping us raise awareness about this deadly aggressive, rare cancer.

[00:01:26] It originates in the bile duct, which is like this thin tube that's about four to five inches long. Yeah. And it takes bile from the liver and moves it into the small intestine to help digest food. Okay, so it's a difficult cancer to diagnose. It can take up to a year sometimes to diagnose and then sadly at that point it's diagnosed at a later stage and certainly has a very high recurrence rate with limited treatment options.

[00:01:57] Now, certainly that is changing. Thankfully, some great companies have come on board with some incredible new medication and drugs to help. But it still remains that it has a poor life expectancy. 

[00:02:11] Bob Gatty: Jan, how do people suspect that they might have this? What are some of the symptoms?

[00:02:16] Jan Meyer: The symptoms can be quite vague and confusing because they often mimic symptoms from other diseases. You could have chills or clay colored stools, a darker urine. Fatigue, itching, maybe a loss of appetite or a pain in your upper right quadrant where your liver is, yellowing of your skin is another one.

[00:02:38] Your eyeballs and just some unexplained weight loss. 

[00:02:43] Bob Gatty: Okay, if you experienced some of those factors, what should you do? 

[00:02:48] Jan Meyer: I would get to your doctor immediately and just keep pushing. And I always tell people, consider Cholangio always. We recently put up billboards here in Delaware to help to say just that, with the symptoms, they're vague and they don't really point to anything specific. So consider Cholangio always. The short form for Cholangiocarcinoma is CCA, so we've played on those words. Consider Cholangio Always. And certainly you need to get your liver function test done. You need to have an ultrasound at the very minimum, preferably a CAT scan and maybe even an MRI.

[00:03:23] But the most important thing at that point is to get to a doctor that specializes in cholangiocarcinoma, and certainly that's where I think patients do very well if they recognize they need to get to somebody that specializes in this rare cancer. You know when you only have a population of approximately 10,000 they, think it's much higher.

[00:03:43] They suspect it's much higher than 10,000 per year. But when you only have that many in a population of the whole United States, you do sometimes have to seek out an expert, which can mean traveling quite a long distance. Now, certainly we had to leave Delaware because there wasn't an expert here in Delaware, so we went up to Memorial Sloan Kettering in New York City.

[00:04:02] Bob Gatty: Okay. What are some of the risk factors that contribute to cholangio, is it genetic? Because I know that your mom had it. 

[00:04:15] Jan Meyer: It's genetic is actually considered to be a very low risk to get cholangio carcinoma. It's usually some forms of liver diseases in the past, maybe some primary sclerosis cholangitis, Fatty livers, liver fluke infections. Vets over in Vietnam and over in Asia eating contaminated fish and getting liver flukes, viral hepatitis, bile duct stones, cirrhosis, and actually genetics plays a small role.

[00:04:46] Now. There are some other signs other things that can put you at risk like obesity, diabetes. Aging, excessive alcohol use and a family history is really just a slight increased risk, but sometimes like an irritable bowel syndrome or even smoking can increase your risk, but those are more minimal than certainly the others.

[00:05:08] Bob Gatty: Yeah. Okay. So in your own case Jan how has this affected you? First of all, Maybe you could talk a little bit about when you first got it and what you did and how you've been coping because you're five years into this thing and you seem to be doing fine. 

[00:05:35] Jan Meyer: Yeah. It is a difficult struggle Some days I can put on a good face.

[00:05:39] In 2018, in 2017, it's really all this started. I decided I was gonna have weight loss surgery. Dean was talking about when we were gonna retire, when he was gonna retire, and I thought, okay, now's the time. So I went through extensive medical testing for about six months, including CAT scans in my abdomen, extensive lab work.

[00:05:59] And then I was on the operating room table to have the actual surgery and the, thankfully, Dr. Peters, the surgeon, he flicked the camera up. He said, I'd just like to flick the camera up and look at the liver before I start, and he saw a shadow, so thankfully he aborted that surgery, which probably saved my life, and he immediately biopsied it and we got the biopsy off.

[00:06:23] And got that, got the definitive diagnosis. You always get those calls in the middle of the afternoon when no one's home and they're like, is somebody there with you? Dean was at work. And so they said, you have Cholangio. So it began this whirlwind of what are we gonna do?

[00:06:39] Thankfully my family doctor, Dr. David Maleh, was really on top of it and he said, Jan, don't worry. We're gonna get you to a center of excellence. I had two appointments one at Memorial Sloan Kettering. I went up there and Dr. Jarnigan's what would you like to do? And I said, I want this the out of me.

[00:06:57] And he said, okay. And then he took it out. And then six months of chemotherapy for mop-up chemotherapy. And then just surveillance. So now it's at this scary point because I'm at five years, so insurance companies, et cetera, I want you to go to six month scans. So I only have scans every six months.

[00:07:17] So that window in between. I've now started doing this new thing called signator testing, where they take a piece of your original tumor, they develop your own lab test, and then they check for circulating cancer in my blood every, whenever I want to do it. So it's, I use it as a safety net.

[00:07:41] There's some discussion whether or not, It shows any kind of success and early detection for cholangio carcinoma patients, but a few of us do it, trying to prove it is or it isn't a good tool to have in our tool belt. So I just did it and it came back zero, which is fantastic. And I just had scans my five year scan.

[00:08:03] So it's, unnerving because I get nervous almost right away after you have the scans that are clear, you think any ache, any pain? And certainly the side effects from chemotherapy are long-lasting. I have still have hand, I still have terrible neuropathy in my feet, in my hands. I drop things all the time. I'm living, and so we try and make the best of it, and certainly that's part of my inspiration to keep going, is to raise more money for research and more awareness so somebody else maybe gets to a center of excellence in a more timely manner. 

[00:08:39] Bob Gatty: You, you're doing all this work to raise money and I know it takes a hell of a lot because you do this annual, this is the fourth annual 5k, and you do other things besides that.

[00:08:51] I know that you and your husband have contributed a ton of money for research and, so you've been working to raise that, some of that money. But you have other health challenges, don't you? 

[00:09:03] Jan Meyer: Yeah, I had an accident about 15 years ago. I'm in a wheelchair permanently, so that's just a small, I don't really talk about it too much.

[00:09:10] Like people when they come to the race and meet me and we've communicated for months or a year, and they're like what happened? And I said this isn't new to us, it's new to you, but you downplay it. And certainly we hold charity wine tastings, we do meals at restaurants where they give you a part of the proceeds.

[00:09:31] And I was very fortunate, like last year I was awarded the Marco Clements Award for Excellence and community advocacy and community impact. And it, means a lot to you and you can I use those. To spearhead getting more money. And then this past December, I was honored to get the Delaware governor's outstanding award for volunteerism.

[00:09:54] And it does help. And then I, we decided, Dean and I decided we were getting a lot of nos from sponsors for our 5k. And it was because we weren't officially a five oh. And so we formed a 5 0 1 at the end of last year and it is seeming to, it is helping a bit get us a bit more money and ultimately when you meet all these warriors and you they become family and so you do it.

[00:10:22] I always think of it like I'm doing it for them because. You know these young warriors that I've met that I've had some good friends very young in their twenties and thirties who have passed away from this terrible cancer. And certainly it used to be a cancer of men, mostly over 65, but it's now being seen in much younger men and women.

[00:10:43] Vets returning from Asia nine 11 responders. It's, sad to me that cancer patients and caregivers and those who have had somebody stolen from clan by cholangiocarcinoma are left to fill these gaps of insufficient federal funding for rare cancers. And it's a shame I think, that patients just can't be patients.

[00:11:06] In our community, we're very fortunate. We got a huge amount of community support for our event, donations and, just support for volunteers. The Rotary Club's involved from Newark and they, were absolutely amazing. We have a young boys running club, the Let Me Run Club. They pick our races. The race they do every year, they're a lot of fun. They bring a youthful enthusiasm that some of us old people don't have at the race, and we're honored that they come. But the facts are that the government is historically the largest public investor in cancer research and play a critical role in our ability to promote new discoveries in a disease like cancer that's expected to take about 600,000 lives this year.

[00:11:51] So many rare cancers are, also grossly underfunded, not just cholangiocsarcinoma. But they're grossly underfunded relative to the number of new cases, deaths, and the number of years lost in total. And federal funding has only stagnated when the cost of research has gone up. And so we I try and say that on every, opportunity I get if I speak to somebody that I think could have some influence about that, because we definitely need to start funding cholangiocarcinoma research because JAMA predicts that by 2040 liver cancer and intra hepatic cholangiocarcinoma will be the third leading cause of cancer death. So with drugs taking 10 plus years, even with accelerated approval I always, my tagline is, this is a crisis because it is 2040 is gonna be honest in no time. And I I'm just hoping other families don't have to go through what we've gone through, what I've seen other families go through.

[00:12:52] Bob Gatty: That's incredible. Jan, I, it to me, I just cannot understand how it is that you can have the energy, let alone the positive outlook that you have. How, you can have the wherewithal to do all this work that you're doing to raise money for this research that's so badly needed. 

[00:13:19] Jan Meyer: I'm certainly a very small cog in the wheel though.

[00:13:22] Bob Gatty: Yeah, I know you are, but nevertheless, you are. It takes a ton of energy to do what you're doing. Yeah. And how do you do it? I don't understand. How do you do it?

[00:13:34] Jan Meyer: I, take it as my full-time job, yeah. I we're fortunate that I don't work and I probably couldn't. I work in the capacity of an RN now, all this stuff. It was a steep learning curve to do fundraisers.

[00:13:46] I had never participated in anything like that. And so all that stuff, the first couple years was pretty stressful. Now I've got it down to a fine art, although Covid kind of threw a wrench. In February. I'm usually way far ahead as where I am, but we had a month off with Covid. We both had Covid, so that kind of knocked us down.

[00:14:06] But we're getting back on track and certainly now I have a team of people that I don't really have to worry about the day of event. I have lead volunteers and the all the volunteers come back, which is quite it's quite an honor that they I say, can you please come back? And they're like, absolutely.

[00:14:24] And you would make a fun event. We have we have food trucks, we have live music cuz a, young lawyer was Here in Delaware passed away from Cholangio, Keith, and his friends come and play on his behalf for, and they're the be some of the best musicians in the state. And then we just have a new 13.1 foot duck that we got last year.

[00:14:49] And everybody dresses like ducks or wears duck costumes and. It's a fun day. It, goes I, equate it to a wedding though. You plan it for a whole year and then it's over like that and you think, oh, that's all it was. But it really is like a big wedding and everybody wants everybody wants to talk to you and it's overwhelming. And the warriors actually come in for the whole weekend. They come in starting Thursday before the race. And then they stay through, some of them stay through till Tuesday. Okay. So we do dinner at our house the night of the race, all the warriors come to the house. The next day we all go for brunch.

[00:15:27] Then we all come back to the house and pack up the virtual packs and we've got it now down to a fine art what we need to do . 

[00:15:34] Bob Gatty: Do you have a big house? 

[00:15:36] Jan Meyer: No. Not that big now. No, no. 

[00:15:40] Bob Gatty: How many people, how many, how many people are you talking about having for dinner for that event? 

[00:15:46] Jan Meyer: About 30 to 40 this year?

[00:15:49] Bob Gatty: Who? Who 

[00:15:51] does the cooking? Don't tell me you do the cooking. 

[00:15:54] Jan Meyer: No. No, We actually cater it and we do Thanksgiving dinner cuz we're so thankful. Okay. And the lawyers have requested it again this year that time is so special at our house because there's not all the other people that are at the race participating.

[00:16:11] Okay. And it's a time for I always say the caregivers, nobody thinks about the caregivers, but to be honest for them that it's a tough go. They. Especially for men who are used to fixing all the problems and then their spouse gets something and you just can't fix it.

[00:16:27] Bob Gatty: Yeah. Our job. As a man is to fix things. Yep, that's true. 

[00:16:34] Jan Meyer: And it is tough. And I saw it take a toll on Dean and it was tough. But now he's on the board of the cholangio Carcinoma Foundation and we're very engaged and we'll do anything for them. And we, have a couple fundraisers after this coming up too locally.

[00:16:52] So we're excited and we like, we'll do, somebody will say what about this for money? And I'll be like, okay, let's do it. Cause I'm just determined to find, I just wanna fund more research fellowship grants. And so our money, what we raised at the 5k, and that happens on May 20th this year in Newark, Delaware.

[00:17:10] You can do it live or virtual. You can sign up at races, the letter, the number two run.com and just look for the quack out on May 20th, it's $30. We don't take a lot of that money out of the race. We pay for the bare minimum out of the race money and we donate the rest and we fund.

[00:17:31] Last year, the people who started the race had lost a spouse that had been at our race the year before. And so those two husbands now, we're honoring those two warriors this year. And the research fellowship grant is being named in their honor. 

[00:17:47] Bob Gatty: Okay. I wanna make sure. Sure. I wanna make sure that people understand.

[00:17:52] You are saying Warriors, not lawyers. Yeah, 

[00:17:56] Jan Meyer: warriors. Sorry, I might Canadian. Yeah. 

[00:17:58] Bob Gatty: Okay. Yeah and, we call them warriors because. 

[00:18:03] Jan Meyer: Some people don't like that term. Sometimes some people call them self fighters. I say, you name it, it's your cancer. You call it whatever you want. Some of them gave, give their tumors names.

[00:18:14] I just call it warrior it's like you're fighting for something. You're fighting against it. Yeah. And it can be tough. When you're first diagnosed, they tell people like, go to the Cholangiocarcinoma Foundation's website page, and that's CureCCA.org. Reach out to them and find, go to their find a specialist link.

[00:18:35] Make sure you go to a specialist that specializes in cholangiocarcinoma. Then get a second opinion because second opinions save lives. A good doctor will worth his weight and salt will not be offended if you go for a second opinion when you have cholangiocarcinoma. The leading doctors actually encourage it, 

[00:18:54] Bob Gatty: and then why do you care if they'd be offended anyway?

[00:18:57] It's your cancer. 

[00:18:58] Jan Meyer: That's true some people my mom probably would've been would've been worried about that younger people aren't as concerned about that. 

[00:19:06] Bob Gatty: Yeah, Now my mom would've. My mom would've too. Yeah. Yeah. 

[00:19:10] Jan Meyer: And my mom would've never. 

[00:19:12] Bob Gatty: She's all worried about what people thought about things.

[00:19:17] So to what do you attribute, if I could talk to, what do you attribute your apparent success in dealing with this disease? Jan? 

[00:19:30] Jan Meyer: I honestly think it was sheer luck and being on that operating room table and him seeing that shadow, because certainly when I was diagnosed and I went to New York City he said I can take it out, but there's one stipulation.

[00:19:46] You have to have an mri, full mri, and it can't be anywhere else. You just have to have that lo one lone isolated tumor. So thankfully I did, it was three centen, 3.1 centimeters, so they took out five by seven in my liver. And then I I fought it. They said, I'm gonna lower your chemotherapy. Your feet are terrible.

[00:20:07] And I said, no, you're not. And then my oncologist would say, you need to send me a picture of your feet. I want to see what your feet looked like. And we had a deal that if they broke, the skin broke. But I had blisters and they were beat red and, I said no, because I had seen cholangiocarcinoma firsthand.

[00:20:25] So I knew that we had to fight it with everything we had. And we did, and I, attribute it too to having a great caregiver. I had somebody who was up in the middle of the night with me at one o'clock in the morning, like clockwork throwing up for three hours on chemotherapy and never a complaint.

[00:20:47] He always just felt bad that he couldn't help me. But it was a tough you, need a good caregiver. Like some of the patients I feel bad for, they don't have that kind of support system. Sure. And it really does, I think, affect how well you can do with this. And also I think I'm just hardheaded.

[00:21:03] I get that spot. That's my Scottish in mean like you're, I'm not gonna go down without a fight. Just keep fighting. I just keep fighting and, then I started doing the fundraising and the awareness stuff and it gave me a mission rather than not doing anything. It gave me something to get up in the morning to I get up and I start working on it right away.

[00:21:29] Especially from January till the race, it's a chaotic, life at the Meyers, but it's worth it. 

[00:21:37] Bob Gatty: You had to learn a ton of stuff about social media and technology and all this kind of thing. Oh yeah. In order to do what you do, right? 

[00:21:46] Jan Meyer: Yeah. And the cool thing was we had this young kid working at our house when I was just diagnosed and I said to him, so if you do this full-time or you do something else, he goes, no, I'm in school full-time for film.

[00:21:58] And I said, really? And I said, you want a project? So he and I started making little mini movies with the Warriors and he comes to our race. We've been to his wedding, we're now honorary grandparents of his kid. And wow. It's really created a wonderful circle and I truly am blessed like some of the people that have come into our life after I've had cholangio and a local wine shop owner. During Covid, we had so many outdoor events at his place at Frank's wine and he helped us raise a lot of money for Cholangio carcinoma. Sometimes for three hours we'd make it $1,500. That's a lot of money in that short period of time.

[00:22:38] Bob Gatty: Yeah. Jan, how much did you raise last year with your 

[00:22:42] Jan Meyer: We raised just over 76,000. So for a 5k, that's pretty good. 

[00:22:46] Bob Gatty: So what's that? Like a record for you? 

[00:22:49] Jan Meyer: Yeah, that's, we it's, slowly going up. It was 25 for the first year, but it was virtual because COVID had hit, the next year we were just over 50 something thousand.

[00:23:00] So this year we're hoping to be over a hundred. 

[00:23:03] Bob Gatty: How do you do a virtual race? I don't understand. How's that work? 

[00:23:06] Jan Meyer: You can sign up for it. Then we send you your t-shirt, your medal, and your bib, and you can walk at your house, at your discretion anytime, and then you can enter your, you can still enter your time.

[00:23:17] It's mostly for me, I let the virtual part happen mostly because of the warriors maybe or the people that have cholangio across the United States. They can sign up. Some people in Canada sign up. This just gives them a way to participate cuz there's so few cholangiocarcinoma fundraisers. This is probably the biggest walk in-person walk.

[00:23:41] And we had just under 600 people, probably about a hundred of those were virtual, so about 500 people. It was a lot of people on site, but it was, and then all the people watching and it's, a lot of fun. It's a lot of work and it's very appreciated by the community. And we we've had the support of friends and friends that have stepped up in big ways for that.

[00:24:04] Bob Gatty: So I, I guess you probably have NBC s comes out and cover it for you, right? 

[00:24:10] Jan Meyer: We've tried to get publicity for it and it's not the easiest thing unfortunately, this was the first year I managed, I've written the Eagles every year, and this was the first year we got their solar panels lit green for World Cholangiocarcinoma Day.

[00:24:24] Certainly back five years ago I started getting proclamations. For Delaware, I got did the proclamation to declare even like that had never been done before. That's how you know, it's this rare cancer that nobody knows about. So now luckily I have been on CBS once and I've been on a few stations at I'm fortunate local radio guy here, he's he reached out to me and he adopted cholangio, and he comes and he's our mc at the race and certainly a local magazine. That's, cool. In Greenville, they've been very kind and done lots of articles about Cholangio. Some days I open the magazine, I think, oh, Cholangio again. I'm sure the neighbors are just thrilled. You do, you can, and we moved into a new neighborhood just in August and I sent a note out to the whole neighborhood to say, Hey, I'm sorry it's Cholangiocarcinoma month.

[00:25:18] I have this deadly cancer. And cuz we had flamingos all over the front lawn, green ones with a big sign that says What the Flock is Bile Duct Cancer? And then all these ribbons and then you're, and then these green lights and you're thinking these neighbors are gonna love us. But I'm telling you, the outpouring, they were so kind and the outpouring of love, they put checks in the mailbox and I was like, who are these people?

[00:25:45] They've been so supportive and kind but, and tolerant. But we took them down. Trust me. The second it was, why 

[00:25:52] Bob Gatty: Why do you call it quack out? Why do you use a duck? 

[00:25:56] Jan Meyer: We use the duck because there's a, warrior out on the west coast named Mindy. And Mindy had a duck and she started calling it her bile duck. And so it's just a clever play on words. And now our whole community kinda embraced the duck. So I credit, I think it's quite clever, really. 

[00:26:15] Bob Gatty: You sent me these little ducks and I didn't know really what the origin of them was. 

[00:26:22] Jan Meyer: But now I understand this, is this.

[00:26:25] Oh, 

[00:26:25] Bob Gatty: let's see it. Come on. All right. That's good. Yeah. There it is. 

[00:26:29] Jan Meyer: That better? Yeah. Yeah, yeah. So we give those out and they're a, every year we have them custom made, so we're trying to make them like a trend that everybody wants the latest bile duck. So this is bile duck number three. Or four. Yeah, three.

[00:26:46] And so everybody's signing up just to get their bile duck, to be honest. 

[00:26:51] Bob Gatty: Oh, okay. So let's talk your, on your 5K coming up again, the date is May 20 it's in Newark, Delaware. 

[00:27:02] Jan Meyer: Yep. Newark, Delaware at Midnight Oil Brewing Company. They've been an excellent partner with us and super supportive of us having the race there.

[00:27:10] We get great sponsorship. Insight once again insight's, one of the main people that have been with us since the beginning. They've sponsored our 5k, so they're the main cancer quacker, and then we have. We have Servier and we also have Taiho Oncology came on board this year, but we have like champion trophies.

[00:27:34] Cholangio now is hitting and affecting more and more people, and so champion trophies here locally sponsor and give us a big discount on our medals, and we get really nice medals as a result. But they do that because they honor his friend, bill Hayes, who was stolen by Cholangio. And then our insurance company, nationwide Insurance, they sponsored every year.

[00:28:01] Kirkin Roof. This year they were putting on our roof and they said they would sponsor it. And we're, very fortunate that Herrs, Wawa we got some kicker hitters.. 

[00:28:13] Bob Gatty: How much does it take to sponsor to be a sponsor? 

[00:28:17] Jan Meyer: We, do various sponsorship levels anywhere from $250 to 20,000.

[00:28:23] Okay. Yeah, so we've done sponsorship for 250, but we only do one at 20,000 and then we cap, we only let one person do it at that level, and then the rest 10,000 and down. We're hoping to get more sponsors. I certainly send out, I sent out about 400 letters that I type out myself and print and send.

[00:28:48] And then you have to get all the prizes for the people that are in the race. So we're very fortunate. A lot of the local businesses come on board and give us gift cards, and some of the chains give us gift cards. So then that's our prizes. So at least we don't have to put, take that out of pocket or out of the race.

[00:29:04] Bob Gatty: That's very good. So how can people get involved 

[00:29:08] Jan Meyer: to say we, are, we're still looking for a few volunteers, but otherwise you can, you could email me at TeamCureCholangio@gmail.com. T E A M C U r, EIO, C H O L A N G I o@gmail.com. And certainly you can sign up at Races the number two run.com and it's $30 for virtual and 25 in person.

[00:29:34] And anybody coming in person, we give you a voucher and you get your meal free. So we have a, you get a free beer if you're over 21 from the brewery. We give you a free lunch. We try to keep people on site so they can learn more and maybe meet some warriors and stay connected to the community.

[00:29:50] Bob Gatty: What about finding a place to stay?

[00:29:53] Jan Meyer: We have actually, if you go to our web website for the race, we have we negotiate discounted hotel rooms. So we have two hotels on the website and once they fill up we ask them for more rooms. And we actually get, we had 26 states participating last year and we had people come from Texas, Chicago.

[00:30:13] People come from Michigan, they come from a long distance. Cause it's such a rare thing to be able to have that kind of community. 

[00:30:20] Bob Gatty: Okay. All right. Is there anything else you'd like to add before we close up? 

[00:30:27] Jan Meyer: I just think if you do have cholangiocarcinoma or you get diagnosed, it's overwhelming.

[00:30:32] It's really scary. If you're not scared, you should be, and that should motivate you to go to CureCCA.org, get a mentor, request a mentor. They'll help you, guide you through all the craziness that happens when you're first diagnosed. Find a specialist on the map, get a second opinion, make sure you get mutation testing.

[00:30:53] That's critical with our cancer because it opens up a whole new world of treatments for you. And just find older warriors. You can find them on social media, on Facebook, and you, find them there and it they can give you some hope, certainly. I found hope from people that had the cancer loan before me, and many of them are still here.

[00:31:14] So people are living longer with Cholangio. And that's, the best part. It's hope. We always say that donations equals research. And research equals new treatment options and new treatment options equals hope. 

[00:31:29] Bob Gatty: Janice you mentioned a little while ago, the Cholangiocarcinoma Foundation.

[00:31:37] That's a partner of yours, right? 

[00:31:40] Jan Meyer: Yeah. Actually we, don't, we kind of volunteer for them, Dean's on the board with them, and we had a very separate, we have Team Cure Cholangio and our mission is to fully, we're not trying to reinvent the wheel. Those people are incredible. They have it down to a fine art.

[00:31:57] What you need to do, there's a yearly conference. The physicians respect that charity, all the patients respect that charity. So all we did in forming our 5 0 1 was just in order to give them more money to facilitate more research. Okay? So we only raise money for research though we kind of stipulate that we feel that research is so key that, so we, any money we get, When we give it to them, it has to go to research.

[00:32:24] Bob Gatty: So they fully support what you're doing, right? 

[00:32:26] Jan Meyer: Oh, yeah. Huh? They're amazing. Yeah, they're amazing. They're, I think they think, I have some wacky ideas because we just sent a thousand just under 900 ducks all over the United States in boxes to people for them to hide, and then they had a QR code on the bottom of them, and then you could scan the QR code and you could find out about cholangiocarcinoma, I think out of the box. And I think some people like it. Some people are like confused by it, but I don't know. I like thinking out of the box. I think it's a real, 

[00:33:00] Bob Gatty: you should have been in marketing. You do a great job.

[00:33:03] Jan Meyer: Oh, I know. That's what Dean says.

[00:33:04] Dean's like, why were you a nurse? And I'm like, what? Kinda like nursing, but Yeah. 

[00:33:09] Bob Gatty: But you told me you didn't like blood. 

[00:33:12] Jan Meyer: Yeah, no, not so much. I worked in radiology the last couple years of my career. Oh. I really enjoyed radiology and there's something really special about being in healthcare.

[00:33:23] You get to meet patients that they're most vulnerable and when they're so open and I don't know, you get to see families and get to know them in such a special way. I really, that was a really a special time for me. I lifeguarded all my school years and then I went into nursing and I don't really know anything else.

[00:33:40] So now I guess marketing. But why 

[00:33:43] Bob Gatty: You've learned a lot about marketing cuz I've seen the results. Yeah. The shirt is one of them. 

[00:33:51] Jan Meyer: Oh yeah. We love that shirt. I'm very proud of this shirt. All the names on the front are warriors that were currently fighting at the time of the race.

[00:33:59] And then on the back are all the warriors in the cancer ribbon that had been stolen by, I say stolen. Cuz that's what happens. It takes people way before their time, way before they ever should be because it's such a aggressive cancer that has a really high recurrence rate. And it is I don't take, I don't take it for granted that I'm still here.

[00:34:19] And I think that's why I keep focusing on doing more because I can. I'm and we have a deal though, Dean and I, that if I was to have a recurrence, which could happen, I don't ever dispute that it could that I have to stop doing all this immediately. All this would stop. There would be no more until I and I have to focus on my health.

[00:34:42] But until then, we keep going and we keep raising money and we just did an event for Delaware, did a fundraiser for the state in 24 hours. The state, it's crazy amount of money, 2.5 million they raised for all the charities in Delaware. Wow. In 24 hours. Wow. And so when I signed up, the fellas said, I don't know if you're gonna get much money.

[00:35:05] You're signing up late to the game. But I hadn't heard of it before and we made 1500, so I was pretty happy with that. Sure. Like we placed a hundred out of 333 charities, small charities. So I was like, for the first time, but next year we're going for more. Next year we get all the bonuses.

[00:35:25] Bob Gatty: Oh, it's 1500. You, wouldn't have had otherwise. 

[00:35:29] Yeah. Yeah, Okay. All right, Jan. Listen until the next time. I appreciate you coming on with us and maybe we'll do one more right before the race if you want to. 

[00:35:41] Jan Meyer: Sure. That'd be great. And I listen, Bob I really appreciate when people take the time to learn about Cholangio and spread it because you could save a life, you could get someone.

[00:35:51] Who has some vague symptom, maybe think, oh, I should consider Cholangio, and then they push it with the, problem is when you get these symptoms, you really have to push and advocate for yourself. I don't know very many patients who don't. And getting this out into the public is so critical right now.

[00:36:09] Especially. If you Early detection isn't possible cuz there's no detection tool. So it's basically, once you get it, then you know, you, hopefully you find it incidentally, which certainly is what I feel was the benefit for me incidentally following him. Okay. 

[00:36:26] Bob Gatty: All right Jan. Thank you so much 

[00:36:28] Jan Meyer: Appreciate.

[00:36:29] Thank you very much, Bob. I appreciate you. 

[00:36:31]