In this episode of You’ll Never Believe Me But…friend of the station Amanda joins Cutter to talk about her exciting cancer diagnosis in Nicaragua and her Not Dead Yet tour.
You’ll Never Believe Me But… is a lighthearted storytelling podcast about what’s real, what’s fake, and what’s funny. Guests come on and tell two stories, one real one fake, and laugh and joke about it with host Cutter as they enjoy storytelling while he tries to figure out which story is the real one.
Good morning, good afternoon and good evening everyone. My name is cutter the you may know me as three bears in a coat on air on HD one, and welcome to this episode of, You’ll never believe me, but. “You’ll never believe me, but” is a storytelling podcast being produced here at WKNC about lying to me, every episode I have a guest on and they tell me two stories one real and one fake, and I have to decide which is real between them. For those of you that are new here, or for those of you that need a quick refresher, I’m gonna run down the three rules we have here before we get into today’s episode. Rule number one, your story should not do significant damage to anyone else or their character. We’re not trying to be outwardly mean to anyone other than ourselves. Rule number two, if someone else is featured in the story, you must either have their permission to say their name or use fake name for them. You agreed to come on the show and tell these stories but unless they agreed to have these stories told, just use a fake name. And rule number three, and this is the easiest one. All stories should start with. You’ll never believe me but and then a brief synopsis before starting the story just so we all know what we’re getting into, and it is a nice little nod to the show’s title. So with all of that housekeeping stuff out of the way, let’s go ahead and get into today’s episode. Today’s guest is Amanda a friend of the station and someone I’m excited to get to know as this is the first time that we’ve met Amanda, how are you doing today?
I’m Great. I’m really excited to be here. I was a college radio nerd myself. So it’s wonderful to be in a studio again.
Awesome. Where did you go to college and what radio station?
Undergrad, I went to George Washington University. So in DC, and we had very very, This is so much cooler, we had very little bandwidth to get very far. So I don’t think even all the dorms were covered by the radio station. Definitely did not have the listenership that WKNC has.
Yeah, I’m very lucky. WKNC is sizable. And it’s got a long enough history that I think that that definitely helps. That’s awesome. Well, I’m very glad to have you back in the studio, then. I was told that you have rehearsed your stories over a long drive on the way down. Can you tell me a little bit more about that?
Absolutely. So I live in Michigan, technically. And I used to live here in Raleigh and work at NC State. But now I live in Michigan, and I am here visiting. And so we went to Atlantic Beach for last couple of days. And that was pretty incredible. Yeah, I got a little beach time and it was good. It wasn’t busy. So that was especially nice. Oh, so yeah, had some time on the beach and swimming. And Patrick caught two sharks, which was very exciting. Little baby sharks,
And that is your boyfriend?
My boyfriend. Yep.
Awesome. That’s awesome. And so on the way back from Atlantic say to hear you rehearse your stories with Patrick, is that true?
We listened to the second episode of this podcast, which was wonderful.
Thank you. Thank you.
It was great to hear. And so we listened to that. And I just was like, Okay, I had a bunch of different ideas, and just kind of narrowed them down and talk through what was you know, what was going to be most believable as my fake story.
I feel like that’s a lot of pressure on me now. Like, like, the stakes are so high. Everyone’s getting so into it, which I am all for, by the way.
Absolutely, absolutely, it is a great challenge. It’s like, storytelling is so much more challenging than I ever thought it was. Anyway, I you know, I think I’m a natural storyteller, but I had to prepare for The Moth one time, I did The Moth on NPR.
Oh wow, Amazing.
And it was incredibly mentally challenging. Just they, you know, you can’t do use any notes at all. And my story was about 12 minutes. And so you just would, you know, practice with picturing what was happening and talking about it. And it was a grand challenge. But but really fun. So I’m excited to be here. This is a really fun idea. And I like can’t wait till I get to guess about yours.
Oh I am very excited. I think that that’s gonna be the most interesting is to see the development of it over time by the end of the season. So you, you talked about the moth, you do a lot of speaking Is that right? What all, Where all do you speak? What all do you do?
So I speak a lot to medical students and nursing students and just to regular groups of people and teach them about different medical topics, mostly about ovarian cancer. And I’m also always just kind of working on projects that, you know, put me where I’m trying to raise awareness or as an advocate for a particular political issue. I do a lot of work on policy. and things like that, too. So
amazing. That’s impressive. Well, I’m honored to have a NPR featured Storyteller here on my podcast. Unless you have any questions for me, we can go ahead and jump right into it. I’m very excited.
Sounds good. You will never believe me. But I was diagnosed with cancer on a trip to Nicaragua. And they had to get me to the hospital by emergency boat.
Emergency boat is amazing. And wow, I don’t even know where to start with that. unpacking it, I think the best place to start is just to let you tell the story.
Absolutely. So in my, my professional career, I’ve always run service and leadership centers at different universities. So like, helping nerds save the world is kind of my specialty. And I love getting to take students abroad on service trips, you know, often, it’s called, like Alternative Breaks at different schools and things like that. So a lot of people have done programs like that. We have them here at NC State. Amazing to go on to. And I got one summer, I had an incredible experience where I got to take 15 of my Stanford students at the time abroad to Nicaragua for like, about 8 weeks.
Oh, my goodness, that’s a long time.
It was pretty much the whole summer. And the really cool part was it was all themed around, like natural medicine. And just understanding kind of medicine in the context of this developing country, and in this different context. And so a lot of these students were really intense type a pre med students. So even preparing to travel with them was sometimes challenging,
I would imagine. Yeah.
Even down to like, what do you pack becomes like a whole exercise. Being prepared and everything but, you know, you get to know people really well, during an experience like that.
Absolutely, I mean, eight weeks is a long time long time
And we’re living together in homestays.
Oh, wow. Sure. Yeah.
It was usually like two or three of us at each in particular house, we would stay with a family in Nicaragua. And what was really amazing is, we were on this island called Isla Oma Teppei, which is in the middle of Lake Nicaragua.
Oh, wow. That’s awesome.
And it’s, you know, it’s all volcanic. Yeah. Beautiful, jungle, volcanic jungle. But this island is pretty remote. It’s actually there’s some statistics back then they used to say that about 40% of the people who lived on the island had never left the island.
Oh my goodness. And this trip was was when?
Oh, sure. This was 2008
- Okay, amazing
As an eight. And it was just a beautiful, we were having an incredible experience. A lot of what we were doing was like giving vaccinations to kids all around, we would have these like health fairs that we would set up and we would give vacunas por los niños We would also help they would we would set up for nurses and doctors to be able to give women checks for cervical cancer which was really big. Yeah. Which is like my favorite Spanish word. It’s Papa Nicolau. means like, pap smear, amazing, thats like my favorite spanish word to this day, we would do all these things. And we got to work on like a medicinal tea farm, just incredible experiences, and really got to understand the country and the people and, and just kind of see that there are so many different ways people think about medicine and think about health. And you know, a lot of what we do, even in our Western culture, you know, drinking water, and resting are two of the very best things you can do for almost any problem. No matter what. So it was really cool. Because there were things that you know, we maybe wouldn’t think of first in our in our medicine culture, but that we learned our staples in this other country, where a lot of people are also really well trained in medicine and just have different viewpoints and things like that. So it was incredibly cool this experience. And then there was this one day,
of course, every trip does,
and I started to feel the worst pain I have ever we were out volunteering, we were kind of at this natural medicine hospital and it’s it is technically a hospital, but they don’t have like surgical suites and stuff
And it’s also a place where it’s not like a sterile
Yeah, sure, sure
In that situation, they don’t have all the all the sterile gloves and all the sterile things that you need to really do surgery and things like that. Yeah. So it’s a hospital, but not for every kind of condition.
And so the main hospitals are not on the island, because this is a small island in the middle of a lake,
Absolutely. So, we were having a regular day volunteering, this is after lunch, and I just felt this pain. And it was a pain Cutter that was so bad. I don’t know if you’ve ever been to the hospital and they’ve asked you like, what number on the pain scale?
Okay, this was a 10 .
Oh, wow, that’s insane.
And I have had all sorts of things happen to me over the years. And I will never say 10 again, I hope because 10 it was so bad. That it either had to stop or I knew I was gonna pass out.
Yeah, no, I I have maybe hit like four. That is terrifying.
Yeah, I had a really bad break. And a dislocated elbow once.
Oh, my goodness. Yeah.
You know, that was a really nasty looking one and that was like a seven. So a 10 was tremendous.
And so the next thing I know, I’m on the ground.
Oh, my goodness.
I did pass out it hurt so bad.
Yeah. That is fair.
And you’ll notice I’m really good at laughing at cancer stories at this point, too. Cause this was also a long time ago, right?
And so I’m feeling this pain I’m passing out and I realize, okay, what are we going to do? Because I’m the one in charge. I’m the adult?
15 college students.
Oh, my goodness.
And I’m used to being the one to take care of them. And at this point, I’d had, I’d had a student get dengue fever, you know, and that was like, super stressful. We had to like, go to the hospital. And I had to take him back and forth between this hospital and this medical doctor. Because, like, they had to do a certain test at one place. And then they couldn’t read the test at that place. They read it at the other place, we’d spend like days going back and forth on the bus. So I knew that this was like, I’m literally laying there. And I’m thinking, Uh oh, I’m going to really have to get some help. And I don’t know that I’m going to be able to get it on this island.
And it’s still hurting like crazy.
And so very quickly, they said, Okay, We got to do something. And immediately The doctor came out who we had been working with this naturopathic doctor, she said, we’ve got to get you off the island. And so one student who to this day, I am so thankful for, right? Absolutely. We will call him Zack, and Zack is now actually legitimately an infectious disease doctor. So he I gave him a little bit of a test. But he came with me on the boat. It was a driver of the boat who we didn’t know. And it was one person like a kind of like a medical assistant that we worked with regularly. So somebody that we knew and we knew spoke both English and Spanish.
And we had, you know, my Spanish listening skills are pretty good. But my speaking skills aren’t really confident back then. Yeah. So it was it was like Zach was a great bilingual speaker too. And so there were, so I felt this terrible pain. But I felt like, okay, we’re getting in this boat we’re having. And now this is not like a big boat, we are talking a little speed boat. And the good news is there are only four of us. And it went really fast but then we had to get there. And then we had to find, okay, how are we going to get actually from there to the hospital? So they were literally from the island, calling ahead to try to make sure there was somebody that could get an ambulance right there to take me to the hospital. And so you just think of like, how many people had to be doing all of these things? Because the infrastructure is not like we have here.
I would imagine.
So there’s all these people working behind the scenes to help me get to this hospital, which is in a more major city in Managua. And so we get to Managua and they basically find out very quickly, okay, the first they think, Oh, this is appendicitis.
And then they think, Oh, it’s a kidney stone.
Okay. Also bad.
Yes. But it’s neither of those things because they start giving me more and more IV pain medication. And they realize, Oh, this really is a 10 on the pain scale because she’s in so much pain she’s still awake. Even though they are giving me these drugs that kind of should knock me out a little bit. And so then they did this other test. It’s like a kind of ultrasound. And they realized I had this thing called ovarian torsion. Now, this is a 10. On the pain scale. This is when you have a fallopian tube with an ovary on the end, and the ovary has twisted and so the pain you feel his actual gangrene. Like internally, gangrene is happening and your organ is dying because there’s no blood flow.
Oh my god.
And so that’s what the crazy pain was. Yeah. And so, you know, then they had to make this decision to they said, Oh, it’s no big deal. All we do now that we know what it is, is we make these little laparoscopic cuts. We go inside we untwist your ovary and then you’re done.
But basically, it didn’t happen like that. They had to because they noticed when they tried to go in and just really simply look at it. They noticed it had all these tumors.
Oh my goodness.
So they actually had to cut me open hip to hip. Oh, and I woke up in a faraway country. Yeah. At the time. I was by myself because my student who was with me was like, in a waiting room, you know? And I don’t have any contacts in because they make you take those out when surgery happens
Yep. Yeah, of course,
So I can see like nothing. And that’s and I was like, and then you know, I found out Oh, it’s you know, they did they do like a frozen biopsy while you’re in surgery. They like basically do this quick. Immediately they freeze part of the tumor and they cut it so that they can look right then and say, Okay, this looks like cancer, or no, it doesn’t. So that they can kind of like, figure out what direction you’re going next. Right? Sure. And so they said, Okay, this is cancer. So I was still like working on a trip abroad with 15 students.
How many, like how many weeks in are we? Because because we have a whole, like, a whole, like somebody else already had to go to the hospital. So how many how far along? Are we in this?
Almost to the end, we maybe had six days left?
Okay. Okay, six days is imminently survivable.
Except for me, I had about 12 more days left, because I had to stay in the hospital. Right. Luckily, by that time, the students were, you know, we had we also had in country staff, like from the organization that we worked with, sure. So they didn’t need to, like send anybody else in to or anything, they just, you know, they they may do and they’re already all settled, kind of with knowing how to do everything they needed to do in the country and everywhere. Yeah, we were just winding down. But I did hear about a few crazy things that happened on the trip after I was in the hospital. Later was like, Oh, yeah, you thought you could get away with it.
When the when the one staff is away. That’s so funny.
The craziest one was this wonderful girl on our trip. Who was a, she was always in the junior Miss pageant. She was like a pageant girl.
And she literally they were on the beach in this, this town called San Juan del Sur in Nicaragua. Yeah. And she fire twirled a baton.
Awesome. Oh, that’s so cool,
because I guess she knew she could do that. But it’s one of those things that as like the person in charge of her health and safety, I went over my dead body are you twirling a baton with fire.
It was over your hospitalized body, if that makes it any better.
So they really enjoyed telling me those stories when we all got back to campus
Absolutely. That’s so funny. I would imagine for for a group of like you said like a dozen. how many type a Stanford pre-med students who you said like if packing is a big ordeal. I would imagine that your staff member who’s there with you going to the hospital with eventually what turned out to be cancer would be a little more stressful, I would think.
And they were so sweet. They were so worried about me. But at the same time, it was so incredible because we were learning about all of these medical and health issues.
And these were like the kind of students who all wanted to become doctors or some other kind of health professionals. And so it’s very strange. But knowing them as I do this many years later, it’s like 13 years later.
Sure. Yeah, yeah.
I know that they are the right people to, that became doctors because they were there for me at a time when I was at my worst.
No, absolutely. That’s amazing.
Yeah, I was married at the time. And you can imagine how scary it must have been for him back in San Francisco, like, what is happening? Yeah, but it works out. Luckily, we had this. A lot of universities do this. We had like a special kind of insurance that like gives you access to these international doctors. And so you have sure you can, like call these people to make sure that everything that’s happening is like, in line with the, like, what we would do in the United States and stuff like that. Yeah. And I and frankly, there’s very, very well trained doctors there. So I was incredible hands. But it was it was pretty exciting. It was a little too a little too exciting. And you definitely don’t know what it’s like. I mean, very few people have experienced that level of pain. In a boat with like, you’re getting wet because it’s like a speedboat. Yeah. It was a very harrowing experience. We’re like, bumping along.
Oh, my goodness. Yeah. Wow.
It was a lot.
That sounds like a lot. Well, thank you to doctor Zach. Now, Dr. Zach, for that. Wow, what a what a What a life saving thing.
And he was just a freshman back then.
Oh, my goodness. Let if he doesn’t tell that story at every party, he goes to, I would be disappointed.
I’m sure he does, actually. Cuz he’s the one that also got Dengue fever earlier.
Why not? Yeah, why not?
The crazy thing with that was I was in the hospital with him when they said it looks like you have Dengue fever, which, you know, to an American sounds like a big deal. But in Nicaragua, it’s like, like, a Tuesday. Because it’s something that, unfortunately is so common there.
They just, they just go with it. Yeah.
And so what they told me, you know, and my Spanish was pretty good at the time. But they said something. And I look over to Zack, because his Spanish was really good. And I said, Did they just tell me to watch to see if your eyes start bleeding? And he puts his hand on my shoulder? And he goes, yes. And so it was like Oh, my goodness. And it was just one of those experiences in life where you’re like, I can’t believe this is my job.
That’s your job. Wow.
And I had to call his parents and tell them he had dengue a fever. I mean, that was very scary.
I think yeah. I cannot imagine doing that.
Absolutely, like a freshman in college.
Yeah. Yeah. Like, Hey, your kid has been in college for a year. They went to Nicaragua, they want to be a doctor. Also, his eyes might start bleeding here in a minute,
but I’m watching for it.
but I’m watching for it. So we’ll be good. That is terrifying.
Yeah, so that started the you know, almost 13 year journey I’ve been on since.
Wow, I would imagine. What an exciting story. I mean, to to not the best, you know, story in the first place. But that’s exciting to say the least exciting.
But I thought it fit really well with that. You won’t believe me, but
Oh, yeah, absolutely. That is difficult to believe. Just by the facts of the story. That’s perfect. exactly the kind of story we’re looking for. That’s amazing.
You’ll never believe me. But in 2015 I was left for dead by medical science. And I went on my hashtag not dead yet tour. And I’ve been on it ever since.
Yeah, I wish I wish that this is a video cast right now. I am mouth agape eyes wide. That. Yeah, please, please.
I just, it was I had just finished. Some really I’d already had a bunch of different surgeries for my cancer since the first diagnosis. And then I had a recurrence, and I had to have more surgery.
And then I had another recurrence. And that time I was living here in North Carolina. And they did, I had to do some really challenging chemo. That’s kind of like the standard that everybody with ovarian cancer goes through, which is just like six rounds of what they call Taxol and Carbo flattening. And you take these drugs intravenously, right? And, you know, these are more of the stereotypical cancer drugs where you lose your hair. And, um, you know, you feel nauseous and stuff like that. But it is important to remember that like, every kind of cancer drug that I’ve been on, at any point has different side effects. So that’s not that’s definitely not even the norm with cancer anymore. People can have really different experiences, but basically, um, I had to go to the doctor one day and they had to tell me that the chemo didn’t work. My kind of really rare ovarian cancer is called low grade serous carcinoma. Only like 4% of ovarian cancers. And most people are diagnosed with ovarian cancer, like the average age is like around 63. So in someone so young, I was I was 29 at the time.
Oh wow yeah.
So it was really shocking for the doctors. But the real problem is that this kind of rare cancer I have, it’s called low grade and that it’s good and that it grows a little slower than some of the other kinds of cancers but it’s really bad. Because all of the medicines, almost all of them that treat cancer involve trying to get to the fastest growing cell.
Yeah. So that seems to be to me at least a college freshmen at odds with one another
A really smart college freshmen I already know that.
Oh, well, thank you. Thank you. I mean, what can I say
An almost sophomore
Yeah, sure. Yeah. But yeah, those seem to be at odds with one another.
So the problem is, is that often, and you don’t even really know this as a patient, but like, sometimes they’ll give you certain drugs to take that, like, you know, there’s like maybe a 30% chance that it’ll work. And that’s just not the way like science will tell us. Okay, in 30% of the people this work, right, yeah. And you don’t really get it presented to you like that, necessarily. Because it’s the standard of care treatment. It’s what they do for everybody with this disease. And so they weren’t that surprised that it didn’t work. But I was because it was really hard to go through.
At the end of the day. I’m like, it didn’t even work at all. Yeah, cuz I was still trying to work at the time. And I was like, I was so sick. And you know, of course, you’re, you’re bald, and you look sick. And everybody’s kind of weird to you. It’s a very strange, strange way to live for a while. And this campus can be huge. And I was always trying to, like, run all over it and get everything done. And I was just exhausted.
And so I had this one day at the doctor where they had to say, like, and I was by myself, which was even harder. And, you know, they said, I’m so sorry, but like, there are no treatment options left for you.
and I was, let’s see, at that time, I was 34 years old. 34, 35. And I was like, left for dead by medical science. They, they said, okay, there’s nothing else we can do. You need to prepare for your death. And, you know, that’s one thing but then help prepare the people that love you for your death. It’s like a whole nother level. And it’s, it’s also just, it’s just it’s a lot to wrap your head around. But then you immediately are thinking, Okay, I got it. I gotta get on to like doing things that matter to me. Because I don’t know how much time I have left. Right? You know, and like, you always see in TVs and movies that they give you like, Oh, you have this long to live but most cancer doctors will not tell you that because there aren’t very good you know, the science doesn’t really tell us an answer. You know, it’s all guesses so I didn’t really know how much time I had left but I just decided okay, well I’m not dead yet. And I have always embraced ever since that whole Okay, I’m not dead yet that’s my that’s my saying I you know I have shirts to say it I’m like I went on my not dead yet tour. So my tour involved just some crazy stuff. I learned how to whitewater kayak.
That’s so cool.
For the fourth time when that when I had cancer for the fourth time, and I was like massively sick and bald in Montana
Yeah, why not?
And I I learned how to like, I mean, I’ve made it through class four rapids on you know, a huge river in Montana. The great fork and um, you know, I got to kind of go visit family and friends who were really important to me I stayed in Seattle for a while I lived in a cabin by myself in quarter lane Idaho because I thought like, I’ve never been to Idaho that looks cool.
At that point, especially just do it why not
And I can afford it and so I just decided I’m gonna run off there for a little and um, yeah, and then I came back and I ever since I’ve been kind of focused on you know, my life has been about has always even my career has been about how to make positive impact and how to help other people do the same. But it’s so different once you really are at the end of your life. And you have to figure out, Okay, how do I make this meaningful? And so, for me, it’s turned into so many crazy things I can’t even imagine, I never could have imagined doing. Yeah. So it’s been quite an adventure like my, my not dead yet tour has included, you know, I’ve spoken to, I work with doctors all the time on on patient perspective, and helping them understand, you know, what things look like from a patient’s perspective, it’s so funny, because, yeah, I have a lot of fancy education and stuff in my background. And sometimes they listen to me because of that. But at the end of the day, the things that I say that are really profound, these doctors are things that anybody who has had as many CT scans, as I have can tell you about a CT scan. You know what I mean?
It’s way different being in front of the machine than behind it.
Absolutely, So I work with the American College of Radiology, that’s one of the things that I do and I, I now for the first time this is this is kind of, kind of, I can’t believe it, but I actually am a medical researcher.
That’s awesome. That’s so cool.
I’m not a doctor. I never went to medical school. But as a patient one day on Twitter, I posted, okay, um, what i think i think the exact words were something like, I’m gonna focus on racial disparities this next year. Does anybody want to, you know, who’s in?
And the doctor in New York City, who is amazing. Got back in touch with me. And we have started this project. It’s called racialist, it’s called. It’s actually titled it has a big has one of those big long epic medical titles, centering the marginalized voices of black patients with gynecological cancer.
Oh, yeah, that sounds very medical journey. Yeah, absolutely.
And so what’s really exciting is we’re basically taking, you know, these patients who often face really terrible racial disparities in their care. And sometimes it’s directly because of racism in the system. Right? Yeah. And then sometimes it’s because of things like, you know, there are different kinds of genetic factors that are more common in certain populations and stuff. And so that can cause racial disparities. There are different things that cause them. But what we’re really working on is, how do you think racism itself and racial bias implicit racial bias has impacted your cancer care? And so basically, what we’re doing is we’re starting with the people most affected these patients. And we’re, and we’re directly doing focus groups to listen to them to say, How How have these things affected your care in your life, and then what we’re going to build to try to solve the problem is completely based on what we learned from them. You know, we’re not like setting up. Here’s what we’re gonna do. And this is the solution. We’re literally starting with listening, and it’s really exciting. We just got our first grant last week.
From Cornell, Cornell has already said your cool
Oh, wow. that’s a big, that’s a big stamp, too.
So, I mean, so I’m leading a medical research project.
So cool. Yeah. Why not? That’s awesome.
Yeah, and I’ve spoken to, you know, I’ve been a keynote speaker at, you know, radiology conferences, I’ve spoken to medical students, all over Michigan, especially. And, you know, I just did a conference two weekends ago, that was, that was a amazing national conference about how patients can connect to research. And it’s just kind of, it’s kind of, like, the thing that’s magical is my, like, my purpose in life was was I thought it was one thing. But then I realized that all my skills can kind of, I can use them in a different way, for a different purpose. And so, you know, but, but all the things that I’ve done have been so kind of bizarre and unbelievable, you know, like, like, Who thinks about like, you know, I was like, late 30s, and overweight from cancer treatment and bald and literally sick from treatment. And I was like, I’m gonna learn how to, you know, fight these rapids. Why not? You know, and so I think, I think what’s important sometimes it’s like, how do we challenge our mind and our body to remember that like, we really still can do things and with our bodies, especially, you know, I Can I have lost all or part of my left ovary, left fallopian tube, right ovary, right fallopian tube, omentum, Appendix, cervix, uterus, vagina, rectum, many pieces of large intestine, and so many lymph nodes You can’t imagine. So like my body is physically different.
And so what I think is so cool is like, you kind of when you’re disabled, you have to kind of sometimes try to turn it on its head. And remember that my body’s amazing, because it can do so many things, despite all those challenges,
And it’s, it’s hard, because it’s so different. And sometimes you just wish to be your old self. But you really, you really have to try to think about it like that, because it’s definitely, you know, there’s a lot that you can do. And I think, um, you know, for a lot of us cancer, terminal cancer, especially, you know, and I’ve been terminal for, like, I guess almost seven years now.
Oh, wow. Yeah,
um, you know, my expiration date was a long time ago. But like, I’m not dead yet.
Is this another stop on you’re not dead yet tour.
I’m honored to be a part, then. Amazing. Well, congrats on not being dead yet. There’s a lot of beauty in that. And that being like the the slogan and the tagline is
Yeah, your not dead yet too. There’s a whole lot of things that are possibilities, if you think about it that way.
That’s so beautiful. I really like that.
Oh man. I gotta figure out if you’re lying. That’s sucks, Now you pulled on my heartstrings. Well, that is that is lovely.
I mean, people, people challenge me a lot on it, because they think it’s too, you know, they think it’s inappropriate, or these are things you’re not supposed to talk about, you know, I’m often, you know, I think of myself as like a pretty, you know, kind and appropriate person. But I think it’s really important to be honest and direct about some of these things, you know, that are really about life and death. And so, you know, I’ll, I do get a lot of crap sometimes for the slogan and things like that, because people say, you know, that’s, that’s like, that’s too harsh. Like, you know, people always want you to be so positive about everything. Like, no, you’re not gonna die. Can’t you’re gonna fight cancer to the I don’t fight cancer. Cancer is like, literally some random cells in my body that decided to do something different. You know?
No, it’s not a fight.
It’s not a war. Yeah, I live with cancer, right?
your bad roommates.
And the whole thing is, like, you know, how people always say, like, they lost their battle to cancer. I think it’s the most insulting thing you could ever say. Because, like, at least it’s a tie. The cancer is definitely dead.
That’s true. That’s true. Yeah.
And it’s also just this idea that, like, we have so much control over things that we don’t really,
like, you know, saying, like you lost your battle
, first of all, is like, they, they’re, they’re dead from it that feels insensitive, and to also be like, you know, if only you had tried, like, then it kind of it kind of inspires that thought. And that’s clearly not true.
If you think for a second that any of those people who like had one and done cancer, like that they’re like, more impressive than somebody who’s been like, living with it for years and has been going through treatment, like 10 times as long. It’s so sad. It’s like, Oh, no, you want You’re awesome. And this other person, meanwhile, is like surviving every day. Yeah. You know, so I think I think there’s a lot of misconceptions, but I just hate how people are so you know, sometimes we call it toxic positivity.
And there’s also I don’t know, but people like you who haven’t had a cancer, we would like call you cancer muggles. You know,
I like it. I like it
Thats completely true. And there’s a lot of things we say about cancer muggles that are kind of like, you know, it’s just cancer muggle talk, you know, yeah, cause it’s true, because it’s just this kind of this kind of like, you can win if you try hard enough.
There’s very much a shared experience there. Yeah, among people who have cancer that, you know, I suddenly me is not a part of
absolutely and so I think, for me, it also kind of goes back to how I got diagnosed. Because like, that harrowing experience that happened to me in Nicaragua, it was so scary, but like, it connected me for the first time to like everybody else who has had a scary medical problem like that. And has had to be scared in a hospital by themselves. That immediately made it, that put me in a club.
Yeah, yeah, sure,
you know, and that was really powerful. Because it just, you know, it’s like, it’s like one of those things in life that no matter how different you are from other people, yeah, if you share that.
You’re you’re you’re similar, absolutely,
You absolutely are similar. And so it’s just, it’s always funny to think back to that moment. And like when that when I first heard that, I can say, you know what, I’m just in this place alone. And I’m hearing it in Spanish. And I’m thinking is this, you know, like, actually what they’re saying,
Right am I mistranslating it?
but you know, it goes back to that moment. And ever since that moment, I’ve been a survivor.
So it’s like, when we say cancer survivor, what we really mean is somebody who’s from the moment they get diagnosed until they’re dead, they’re a survivor. So I just have to tell you also this little fun fact.
Because if anybody was born with ovaries, or if you care about anybody that was born with ovaries, so that I think includes every human being
i would argue so yeah,
right. Yeah. So you need to know these four symptoms of ovarian cancer. Yeah, cuz it is one of those diseases, that there isn’t a test for like, when you go for your regular exam every year, they don’t, there’s no test for it. So this is something where you have any of these symptoms, you just go to the doctor and get it checked out. So the symptoms are pelvic or abdominal pains, bloating, feeling full quickly, like you ate, like, you’re really hungry, but you ate only a little bit and you’re full. Okay, and any kind of urinary issues, like you have, you have to pee all the time. You can’t pee anything, anything weird. So it’s basically like, if you have any of those symptoms that are new or unusual and last for like, two weeks, don’t panic, just go to the gynacologist, you know, don’t panic just get checked out, because those are symptoms of ovarian cancer, and almost all of us had some of them and weren’t listened to.
Of course, yeah.
before we were diagnosed like before I even went to Nicaragua, like for the year before. I was going to the doctor saying something is wrong with me.
Yeah. So interesting. It’s like, it’s how well we know our bodies to this stuff. Like that is so scary. That’s amazing.
It’s important to know,
Yeah good to know, everybody, listen up. If you experience any of those symptoms, new or different for two weeks, or longer, go get checked out, please
Go get it checked out, and just advocate for yourself. Nobody else is really gonna do it. You have to be your own advocate. Absolutely, absolutely. And if someone you love is complaining about one of those symptoms, you know, if they were complaining about you know that their heart they thought they were having a heart attack, you would take them to the doctor, but for some reason, some of the symptoms, people just think, Oh, it’s no big deal.
you still need to follow up and go to the doctor salutely.
Absolutely. Little PSA Thank you.
Thank you. I can’t help it. It’s just in me.
Oh, absolutely. No, I’m not gonna stop, I’m not gonna complain, amazing. Well, fascinating. Those are both amazing stories. I, I don’t even know where to start. Because both are so intense. I mean, like, you have your one story where you are, you know, in, you know, in a medical emergency having to be rushed off of an island by boat in a foreign country speaking language as you are, that is a foreign language to you that you know, but still, and then your other one is this, like, heartwarming, like uplifting story of like living with terminal cancer for seven years and then being on this, like big tour. And, and you’re, you know, now a medical researcher and all this is so fascinating and I don’t even know where to start. Because I love both of them. Right. And it’s similar similar to, you know, most of the stories is I want both to be true. Because I think both are amazing.
Thank you.Thank you. I think it’s important to remember that, you know, even things in life that are really challenging, you know, they teach you amazing lessons, and they can propel you in totally different directions than you thought possible.
Absolutely. I’m so I’m so fascinated, I kind of part of me just wants to like jump like I don’t want I guess to get it out of the way to jump to like, talking about it because they’re both so fascinating. I don’t know. I mean, it’s so tough because both, you know, the they’re both very compelling in and of itself. And they’re very, like, you know, you know, every story that you know that we get on here, just like it’s a lot of like serendipity. You’re like, Yeah, why wouldn’t that happen? But that’s like kind of the point of the show, so it’s not really good, a good metric you know, Oh, man. I Think here’s what I think. I think that there, I think that you have one completely true story and one story with some truth in it, that that is being like warped and changed in some significant way. Right. And I think just just from, I think the fact that you tied the two stories together is also amazing that you’ve like, made them contingent on each other. It’s so fascinating. I think. Now, you know, I’m gonna stick with this, I think that the Nicaragua story is is not true. And I’ll and I’ll, I’ll touch on that. I think, first of all, I, when I knew you were going to be one of my guests, right. And I didn’t know a ton about you, the first place that I went, which is, like a lot of people do is like, let’s let’s check social medias. Right. And so as I was, you know, roaming around social media, which is the only Twitter in particular, which is awesome, by the way, like, super cool stuff on there. I did see the not dead yet. In your bio. I did. I saw that hashtag at the end of your bio, which I was like, That part is at least true. And I know that you had done a lot with racial or talked a lot about racial disparities, disparities in cancer medication and cancer treatment. And so those parts to me are true. Right? And that’s amazing. By the way, congrats. Awesome, very cool. I know you’re, you’re a speaker, and you speak a lot of places. And second story is just so like, it’s so vibrant. And so like, it’s so matches, like your personality and how I see you is like having this big mindset change and like, wanting to live in Idaho, like for no reason is is awesome. And from you know, even just from this like conversation, I could totally see that happening. And that’s not to say that i i think the Nicaragua I don’t you know, it’s not that the Nicaragua story I find untrue. It’s that I find that second story is so compelling. And I and I want to believe it, like I think partially, it’s like, I want that second story to be true. So bad.
Oh, that’s so sweet, I mean, I do have terminal cancer in that second story that does kind of sad.
Oh, of course, definitely miserable. But like, yeah, that is a good point.
But like the mindset about it is so good. And it does match the way that you’ve like, you know, you just come off and you just come off. So it’s so vibrant and so excited to to be here, which is like kind of as you said, like not dead yet. I don’t know. I mean, I like the Nicaragua story. I believe that you probably went to Nicaragua if that sounds true. I don’t know just something about that second story feels so true and feels so like personal. Not that you couldn’t not I don’t think you could come up with it. Because like i’ve i’ve you know, continued to be impressed with with how good people are at lying to me. And I fear that I will be here in a second but it’s you know, it’s just that’s so I’m so impressive and it’s such a good mindset thing so I guess that will be my final guess I believe that some major part of that Nicaragua story is untrue. And that that is your full story and that all of this about your your journey and your you know, your four cancer diagnoses and and this like mindset and tour not dead yet Tour, which is an amazing like, I love that so much. I think I’m going to will it into existance and I am say that second story is true. That is my final guests
You want to know. Are you ready?
No. Yes. Yes, please.
Okay, you’re right. You’re one and one. You got one. So you didn’t fail this whole.
That’s all I wanted as long as as long as I got something in the win column.
No your totally right.
Amazing, right. So amazing.
The actual truth is that I got cancer for the first time, about two and a half weeks after I got back from that Nicaragua trip.
And so I kind of told you the story of my nightmare, because I constantly was thinking when it when I first got sick, I constantly was thinking, Oh, my goodness, thank goodness, it didn’t happen while I was in Nicarauga.
Oh, yeah, absolutely.
It’s still so true that the students helped me through it and still so true that they were so wonderful and supportive and stuff. But um, but Yep, that’s the truth. I didn’t actually find out then I found out when I was in Denver. Yeah, this is also a messed up story. But the real truth is, I was in Denver at a conference.
I was about to go down. And I was like, speaking at the breakfast plenary, which is not fancy at all.
It sounded very fancy.
It sounds fancy. And it’s an honor to be included in the program.
But it’s basically the time when everybody’s super hungover and they’re like fighting they’re like fighting over the the good type of bagel cream cheese.
Yeah, that’s from from the few conferences that I’ve like tangentially attended. Yeah, breakfast is the sluggish time,
So its not the best spot. Sure I was I was reaching down to get my bag and I felt that pain. And so then I ended up in the ambulance and off to the hospital and that’s tough. But what truly happened was they really did cut me open hip to hip and all that happened is and and basically when I was alone in the room in Denver by myself because I lived in San Francisco at the time. Wow. The the nurse comes in, she checks my vitals and she says to me, I’m so sorry to hear you have cancer. Nobody had even told me it was a possibility.
That’s the worst.
like nobody had even said, you might you might have even we might find tumors or something like that. Nope. Everybody said Oh, it’s just a super easy little little operation
This is just post the like torsion operation that it was supposed to be. Oh, my.
So she on accident told me that I had cancer.
I was just by myself for the next couple hours with no contacts and in Denver and being like, Is that true?
What is is this the world’s worst April Fool’s joke?
Did she just say that?
Rightm It was she talking to someone else? That is horrifying. I feel like if I’m her, that’s I don’t know that I can ever go work at that hospital again. Like I think I gotta leave.
She never knew
she never knew.
She never knew
if you were a nurse at the Denver hospital in 2008. And you told the woman that you apologize that she had cancer after she had had what was supposed to be a torsion operation. This is for you, by the way.
So yeah, so it still was completely crazy. But thank goodness, it did not happen in Nicaragua, because I definitely would have had to be evacuated on a speedboat.
Lately that’s terrifying. What a crazy It was so so Dr. Zack, I have to ask. He’s still a real person. Still a doctor’s
An absolutely wonderful doctor
got Dengue fever?
Yes. him. I have seen him I saw him the last time like four years ago. He was at UCSF.
Oh, nice. Yeah. Awesome.
super talented. Oh, yeah. So that’s all true I really did have to go the hospital with him and everything but but I just forever since then. I’ve always been like, thank goodness, it wasn’t.
I think that’s so fair.
My family, you can just imagine my family would have lost their mind.
You’re going there to like help with medical practices. And to like that, if that’s your stated goal, and then you have to have these medical practices done on you like that’s horrifying. Like, Oh, my goodness. Well, I’m very glad that that didn’t happen, obviously. Wow, that’s amazing. And then also all this all this, you know, not dead yet tour and and all these living these experiences, this mindset changes true, which Oh, yeah, I mean, warms my heart, honestly,
I’m glad I could give you a good one in that way. I just, it’s true. It’s like life teaches you so many things through all the challenges. And I wouldn’t wish any of the bad stuff on anybody. But you know, but I do think that like, one of the important things is that struggle can give you meaning, right and your life. And that’s really good for our mental health to have meaningful things to do. And so for me, that’s what I’ve been trying to work on ever since. And so even though I’m disabled, and even though I can’t have like my normal career that I used to be really good at I, I now have to find these other ways to make impact. And sometimes it happens just through Twitter and random things like that.
So you have adventures and you just live your life as much as you can. Because we none of us know how much time we have.
Everybody live your life as much as you can. No, I love that. I love that so much. Thank you. That’s awesome. Well, we’re gonna take a quick break so you can listen to my two stories. We’ll be right back with Amanda’s guess as to which of my two stories is true. Hey, real quick, while Amanda is listening to my stories. If you’d like the podcast, be sure to hit the subscribe button wherever you’re listening, whether that’s on Spotify, Google podcasts, or wherever else you get your podcast so you’ll never miss an episode. Also, just so you all remember my two stories. Here’s a quick recap. In my first story, I had a friend get his hand crushed by the blinds in his dorm room on the night before one of my finals and I had to take him to the hospital that night, then almost slept through my funnel the next day. In my second final I got to talking to a potential friend in a pre college zoom event, only to find out that it was her mom pretending to be her but it still worked out because her mom recommended to her daughter that we be friends. Alright, with all that out of the way. Let’s jump back into the action. So Amanda, you’ve just heard my two stories. What are your initial thoughts?
Okay, so I really love that these are like just a slice of college life.
These are so wonderful in that way, I feel so young listening, remembering the little haphazard craziness of communal living. And I’ve definitely I was so endeared to you before I even met you, because I totally remember that feeling of like, please let me make a friend in this first thing. Please let me have one person I can like email or follow up with or say hi to on campus, or whatever it is. Because that is such an overwhelming feeling. And during the pandemic, I can’t even imagine it
Yeah it was it was like I knew, you know, for a few friends of mine from high school or from you know, outside who were going to state. But even then I was like, like, I haven’t seen these people in in, you know, six months. And now I’m going to go like, Oh, hey, I remember in 11th grade, like we’re way past this point. So yeah, no, I mean, that was it was such a big thing. But you know, that obviously worked out in a very interesting way. But no, yeah, absolutely. That was a big part of it for me.
So I loved both of the stories. So in the first story, I’m wondering, tell me again, kind of the timeline.
I’ll do my best I know that that’s what everyone has come back to. And yeah, I get that, you know, and you get to you know, everybody’s like dissecting, which is totally fair. And that’s like the point of the show. If, if I recall, right from from all the timeline, it was a little past midnight, when I got the call from Justin, that, um, that he had dropped the blinds on his hand, which is such a funny sentence. And it would have been, it would have been we we called the the NC State like injury hotline pretty soon after, I think we would have left here it would have been close to one got to the urgent care, and then were sent to the emergency room, it would have been jeez like two, 2:30. And then I think I remember leaving the hospital like around, right around 4. I remember I got back here. I got back here. Like for 4:25. I think 4:30 maybe
And when was your exam the next day?
my exam was Oh, jeez. I’m gonna say it was it? Was it a 2:30 exam? I think. Yeah, I mean, that was I loved my econ class, but I was not worried about that exam. I could have totally written that email and been like I’m so sorry. I’m not gonna be there.
You don’t seem like that guy. No, no, you don’t think like that guy that would have written an email about, especially about a final. I’m just saying that doesn’t sound like you at all.
No, I wouldn’t. Yeah, that was my thought was like, that seems like a lot of work. Even for me, I don’t really want to, you know,
absolutely. Okay. And then tell me about the first time you met grace in person
I met grace in person would have been a while because of COVID. We were only on campus for four weeks. And then we got kicked off first semester. And so I had a class that that grace was in a Ben Franklin Scholars Program class. And so I even would speak to her occasionally in class, just in discussion. Not a lot casually. Um, and it would have been early second semester. I think I think when I met her in person after you know, we she was in my, in my engineering 101 class that we did, we flipped engineering 102 and 101 with the hopes of having engineering one on one in person. Obviously, that didn’t happen. So you know, weird thing, but no, so we had the same engineering 101 class. And so we would occasionally chat, you know, privately while that was going on, and just talk about the class. And I think it was after some some, like projects related to that class. We, you know, she said that she was going to tally with a few friends and I, you know, it was such a weird thing. She was like, Oh, I’m gonna go to tally, but it like, wasn’t an invitation. But it wasn’t not an invitation. And so I messaged her and I was like, are you inviting me? And she was like, I don’t know. And I’m like, that’s not helpful. So I ended up going, I’m like, Well, I’m inviting myself but whatever. And so I think yeah, it was the first time that we had met in person. And we started hanging out more after that, and then it was, man, maybe maybe like a week or two after that. Okay. Um, that she she messaged me and told me that she had the story to tell me.
Wonderful, wonderful. Okay, so I’m ready to guess,
please yeah, by all means.
Okay. With all of my Heart. Okay, I really want the story with grace to be true. So I’m picking that one.
Okay, so you think that one is true.
I love Grace’s mom. Yeah, I totally know that mom. Working in higher education for all the years I have. Absolutely totally know that mom, I can see the conversation going like mom, I have to go do this thing and mom is like, but your in this Ben Franklin Scholars Program and your gonna miss this important important event. Oh, man. Yeah, mom was probably freaking out. And she was like, Listen, I got to go to work. What can I possibly do? But you can’t miss it. And so they came up with this ruse, I’ll just go on this video and I’ll just pretend to be you. And I especially love that it was like you, you need to be friends with this kid cutter. That is so sweet. And my mom, definitely when I when I went to college orientation at George Washington University in two in 1997. Sure, a million years ago. What year were you born?
I was born in 2002. So You were out you were out of undergrad before I was born.
So basically, that I remember going to orientation and literally my mother meeting other parents. And she said the opposite. My mom said, oh, there’s this boy who his mother still calls to wake him up every morning.
That’s I mean, that’s
definitely do not hang out with him.
I agree with your mom on that one. That’s a big no go for me.
She was like this kid is such a mama’s boy. He cannot even handle like waking up.
Wow, that is intense.
So yeah, so she told me the opposite. So I can I totally know that mom. I think Grace is adorable. So please tell her pass this on.
If if she indeed exists, I will let her know.
I like the grace story.
You like the grace story. Oh I do too, are you kidding me? It’s phenomenal. So that is your guess. You’re the second person who’s guessed that story. I wonder if this is gonna be?
No, it didn’t influence me. I listened to Maddie’s conversation with you. And it didn’t influence me. I thought this beforehand. But then it was just, it’s just something about? I don’t know. It’s just so cute. I just want it to be true because grace and her mom are just adorable. Sure. Absolutely. And there’s something the other story for me is just, it’s just great. But it’s like, and I believe that pieces of it are true.
I just don’t think the whole thing’s true.
Fair. I think that’s very fair. Well, we shall see come season’s end. Well, that’ll do it for this episode. Amanda, thank you so much for joining me. I think we learned that while, you didn’t get diagnosed in Nicaragua. You almost did. But you’ve still gone on this amazing journey that I think we can all take a great inspiration from. So thanks for joining me, where can listeners find more of you?
You can follow me on Twitter. It’s actually Michigan should talk like MI Should talk. And on Instagram you can find me at MI like Michigan manda M A N D A. And on Instagram, you can especially see my art which I make and sell crazy handmade card that are all unique I’ve never made to like and that’s another thing that I do with my not dead yet time.
You make like cards?
I make cards some really wacky ones with lots and lots of like collages and you know lots of like paint and ink and all sorts of stuff.
Amazing. You learn something more even after those two amazing stories. Well, thank you so much for joining me.
Thank you This was so much fun and I wish you the best and I feel like we’ve known each other for years.
I do too. It’s been an honor. That we’ll do it for this episode. Our Intro Music is popped on get off of compositions 2 used under the Creative Commons license found on Free Music Archive. Our outro music is vintage news. Off of Production Music used under the Creative Commons license also found on Free Music Archive. I’ve been cutter. This has been You’ll never believe me but and thank you all for listening. Good day and good night.