Jessie Creel Returns: Advocating for your Health

When our close friend, Jessie Creel first appeared on Everyone Is..., she was battling what she thought was pneumonia. That persistent cough eventually led to a shocking diagnosis: lung cancer, despite Jessie never having smoked a day in her life. 

In this deeply moving conversation, Jessie shares her journey from that initial realization—losing an ocean swim she should have won—to assembling a world-class medical team at City of Hope and Stanford. With remarkable clarity and even moments of humor, she explores how cancer treatment intertwines with mental health, family dynamics, and systemic healthcare challenges.

"Anyone who has lungs can get lung cancer," Jessie emphasizes, pushing back against the stigma that often accompanies the diagnosis. She reveals startling statistics—40% more women die of lung cancer than breast cancer—while questioning why mammograms are standard preventative care but lung CT scans aren't.

Join us for this conversation about advocacy, community support, and finding strength in vulnerability.  

Also please donate to https://wegotthis.org/ an organization that helps individuals with cancer.

www.slightlyprod.com

Transcript

Jessie Creel 0:00

I have found it. You know the patience in the question and the wheel of life and the tensions between light and dark and river and borders and all of these like pairs of opposites and being able to hold things at the same time. The duality of life, like all of these things have really like come up and there's so much a part of like what I love about storytelling that I really feel like there's been a merge between my life's, calling my career and how to survive.

Jennifer Coronado 0:30

Hi, welcome to Everyone Is. I'm your host, jennifer Coronado. The intent of this show is to engage with all kinds of people and build the understanding that anyone who has any kind of success is successful because they're a creative thinker. So, whether you're an artist or a cook or an award-winning journalist, everyone has something to contribute to the human conversation, because everyone just is. My name is Jennifer Coronado and I'm here with my friend, jesse Creel, who we interviewed in last season of our podcast Everyone Is, and Jessie is a really awesome, dynamic producer and for those who listened to that episode, which I know there are so many of you, during that episode Jessie had pneumonia and she was coughing quite a bit and since then she's actually discovered that she actually has lung cancer. And, jessie, I wonder if you could really talk about, like, how did you suddenly go? This is more than just pneumonia, this is more than bronchitis.

Jessie Creel 1:35

What were your realizations? Oh well, this is going to sound arrogant, um, but I lost an ocean swim that I shouldn't have. Um, and I remember going what Like that would have embarrassed all of my coaches Like what was happening, and I was just like I couldn't catch my breath. I had done a week of this amazing nine to 12 lifeguard training. That in the California coast is usually done for junior guards, but in down here they decided to offer it for adults and I was like the Guinea pig and I got a few friends to do it. Andrew was one of them.

Jessie Creel 2:06

Andrew won everything, by the way, and he, matt did it, also my husband and they were just like, did you get walloped by a wave? Like what happened? And I was like I don't know what happened, but like I got home that day, it was the final day and I go, I can't lay on my right side. How funny. This was the end of August and the first week of September I texted my therapist and I said I just think I have stage four lung cancer. I can't explain to you why. Should I go to a pulmonologist or should I take an Ativan?

Jennifer Coronado 2:46

And what made you text your therapist versus like your primary care physician, Like did you just want to check that you were not overthinking something?

Jessie Creel 2:56

No, it's because I hadn't felt heard by my primary care physician. But it wasn't his fault, it was a lack of knowledge about my disease. And the fact is that even before I went for my bronchoscopy, my lungs sounded fine. So the only way to really see lung cancer is to do a CT scan. I called my friend Kenny Lin, who works at UCI. He's an MD-PhD scan. I called my friend Kenny Lynn, who works at UCI. He's an MD PhD. But his path to success was Stanford undergrad, harvard MD, mit, phd. Oh, just little schools. I said, hey, I need a pulmonologist. He said you should go see Dr Coley at Paloma Medical Group. He's the best. Dr Coley at Paloma Medical Group, he's the best. He's just like. He's who you want. So I called and he was booking out to the middle of February and I was like, well, that's not gonna do. So they said but we can offer you an appointment with his partner tomorrow and I said, great.

Jessie Creel 4:01

And the reason that I went from? Oh shit, I had to have major mouth surgery and that's why I delayed the pulmonologist, because I had such severe regression that I was about to lose two lower teeth. So they had to do a connective tissue graft and I had already punted it once because of the pneumonia and I was like I've got to get this done because I knew deep inside that it was a box. I had to check if there was worse things down the pneumonia. And I was like I've got to get this done because I knew deep inside that it was a box. I had to check if there was worse things down the road. Because oral health is so indicative of overall health. Can we talk about that really?

Jessie Creel 4:34

quickly Like yeah, why is your mouth and your eyes not part of your body, especially when your eyes are part of your brain, right, like I don't know, I don't know, I do not know that I just found out that New York is requiring insurance to cover cold capping, which cold capping, which is something I can't do because of the type of cancer I have, but it's helped a lot of people save their hair, and I was like go New York, go, like way to go. And so, you know, incrementally, I'm hoping that well, it's not. It probably is not going to happen in the next four years, but I will live long enough, I promise, so that I can see all of these changes that I want through, um, because I'm, I'm so close to it and I'm so I just, I just have such I don't want to say clarity of vision, because that sounds completely arrogant, although there is an arrogance that you have to take on, I think, with cancer. But I have, you know, I'm being treated at the City of Hope with a tandem team at Stanford who came up with the same protocol without yet talking to each other, which makes me feel really good to call without yet talking to each other, which makes me feel really good. And the doctor who Carl's wife is consulting with is the chief oncologist at Stanford and she is the doctor who is in One Breath Becomes Air.

Jessie Creel 6:00

And he said well, I think the reason that your oxygen like the amount you can blow out is because you have so many sutures in your mouth. And I said I don't think so. I said I've been coughing out sutures. I've been coughing, I said the amount of sutures I've been coughing out and this is probably such. This is hopefully where I'm not going to lose your audience but I was like it was like you know, a tally at like a bar you know what I mean. Like it was like something that like, oh my God, I could tell how much I was suffering.

Jessie Creel 6:36

And I and I, like you know, I kind of grew up in a home like a jock who was like walk it off, swam, swim meets with ear infections, you know, played like soccer games with hurt knees, but it was something that just said no, he said I know you have to get to physical therapy because my body was aching and I was doing physical therapy and I said, yes, but he goes, but come back tomorrow morning for the six minute walking test. So I came back, did that? So I came back, did that? Like blew it out of the water and so not a good way to tell if you have lung cancer. So so far, listening to lungs Clear and a six-minute walking test didn't do it.

Jennifer Coronado 7:18

But you kept pushing because you knew there was something wrong with your body.

Jessie Creel 7:23

Which I've come to learn is interoception, slash the patriarchy. So I have a list of five things that I want to read. Not this is not I'm not going to read all through this, but five things that I want to read at the end of this podcast so that people who are especially in healthcare deserts which is an access problem, a geography problem, a whole slew of reasons I want to help them learn some of the things they need, to advocate for some of the lexicon and to follow their intuition. So, luckily, this doctor, dr Rauser. He said you know what, I'm ordering you a CT scan. You're complaining, you're in pain, your pulse is a little high, and so I'm ordering you a CT scan.

Jessie Creel 8:12

So the next day, so, but that was, oh my God, I did the walking test on election day, so my pulse was like way higher than it should have been, but I had walked the pier in my little beach town. I had like no problems with that kind of thing. And so the week following that, wednesday, I get the CT scan and Dr Rauser called me and says I need you to come in. And that's never a great call from a doctor.

Jennifer Coronado 8:36

No, because they could tell you you're fine over the phone.

Discovering It Was Cancer

Jessie Creel 8:40

But now my husband was away. He was at Stanford, ironically enough for a philanthropy conference, because apparently we like spend a lot of time at Stanford. Now, even though ironically would have never, he would have gone in there. But I didn't pay enough attention in school to get high enough marks. But I just had this brave face and I went and sat with the doctor by yourself and by myself, and he said I just want you to know we have the most amazing cancer care here. I was like, well, that's a way to start. And he said but you need a biopsy and I'm not the one to do it, so Dr Coley's the one to do it. And Dr Coley is like in the next room and he'll be in here in five minutes. And Dr Coley, who's initially who I wanted to get Right. And so he comes in and he's this very charismatic man who is so finely dressed and like really confident, and he's Sikh and that's very much a part of him, and he wears a beautiful turban and he comes in and just his presence made me feel better and he was like, well, let's look at the scan together. And I'm like I don't want to look at the scan, like I'm so scared. He said there's no reason to be scared. Um, let's look at it. And so he said I am slotting you for bronchoscopy surgery on Wednesday.

Jessie Creel 10:06

And this was on a Friday afternoon, matt's getting home from the airport and meanwhile Dr Rauser had called Matt who was going through TSA, being like I just want you to know the conversation I have with Jesse. It was like cinematic, how crazy this was. He's like you hear TSA coming through and he's like cancer, like what. So we go and matt is pretty good at like I don't know. He was just like the like, even keeled, like college athlete and high school quarterback and he's like he's really good at evaluating things, whereas I'm like, yeah, it's cancer, I know it's cancer, like it's my body, it's cancer, I know it's cancer, like it's my body, it's cancer. And he's like we don't know that it can be other thing. So the next day, saturday morning, dr Cooley calls me. He says you know what I need to get you in on Monday.

Jennifer Coronado 10:55

Tell me about that, when you're approaching a biopsy like that, like what are you feeling? What like that? Like what are you feeling? What's the prep for that? Like like yeah.

Jessie Creel 11:15

So I just like I don't want to be an ageist at all, but I am I am starting to notice that I'm a fish out of water. So I'm waiting in the pulmonologist waiting room and I am 30 years younger than everybody else. Yeah, you know, I'm waiting in line at the um endoscopy and colonoscopy place for the bronchoscopy and I am the only person who doesn't have to have assistance into any of the beds or you know anything. Yeah, um and um, I like there's just something I'm starting to sense. Okay, like, okay, like you, this is where I like arrogantly put myself on the hero's journey and I was like, okay, I definitely had a call to leave the cave when I was in Albuquerque visiting my parents this summer and I passed a huge blood clot through my lungs. Like that was like a huge, huge thing.

Jessie Creel 12:06

There was a time when I was camping and I had to sit upright to catch my breath and then there was that time when I couldn't lay on my right side and it turned out it's because the tumor had collapsed my right lung. So those three things I had completely ignored until my pride got the best of me and I'm like I should have done better in that ocean swim. Um, now, was that really it? I don't know. It was my mask, you know, and that was like it was what I was wearing, um and I. So I, so I left the cave alone. When Matt was going through TSA is when I really felt like I left the cave and I started to meet my mentors. Um, immediately, dr Coley, as I said, you know, got me into the bronchoscopy Tuesday. He pushed, he was actually in Boston teaching a class and he pushed for the path committee to review it because the next week was Thanksgiving and I was supposed to go to Austin to visit my very sick 92 and a half year old grandmother.

Jennifer Coronado 13:09

So he pushed and he said he called Matt and he said it's cancer, it's adenoid carcinoma, I'm guessing, it's primary cancer of the lung and I have gotten you in with the clinical director at the city of Hope, irvine, and I just was like I knew it and Matt was like you know that was the shock, and that's when a person and you want to help them and you want to take care of everything, but you're still a person with agency and you want to do the things you want to do and you don't want to be told all the time what to do, but also sometimes you need help. So it's that balance right.

Jessie Creel 14:18

And I was very public. I mean, I sent to my closest like 30 contacts, the people I love, the people who I don't want to disappear from this earth without having contact with, of which you were one. I sent the email about my cancer and I started to say there's so much shame in this game. I don't know if it's our puritanical heritage or why we try to assign behavior because people are like what? You have lung cancer, you've never smoked. Like what the hell? And I'm like. Anyone who has lungs can get lung cancer. And also, 40% more women die of lung cancer than they do of breast cancer. Why do we demand mammograms but not CT scans?

Jessie Creel 14:59

Right, because CT scans cost more money um, and, and philip morris has done a good job burying those statistics um, so there's, there's a whole lot of just gross, like machiavellian shit that happens in washington dc that we don't even know about, the den of thieves. I mean, we, we know about it more now than ever, but, um, you know, it was one of those things where I, my friend, Jessica Yellen, who's this amazing I guess they call them creators now, but she was a journalist and multi body winning amazing journalist and she called me and she said what can I do for you? And I said I don't know, I'm just learning. You know, I'm learning. I had sent the results to Michelle up at Stanford. And she goes oh my God, I'm so sorry, Um, but you're going to fight and you're going to win and we're going to get you to win. And Carl was like, you know, he was echoing what Michelle was saying and he was like we're talking about you a lot in his house. And, um, you know, it's just, you're going to fight and you're going to win. He goes you've got this and we've got you.

Building a Medical Support Team

Jessie Creel 16:03

So Jessica calls me and says you know, I would love to introduce you to Ann Wojcicki, who I can't say the last name of, but she had founded 23andMe and her sister, Susan, who is the CEO of YouTube, passed away of this exact cancer in August. Not the exact cancer, the non-small cell lung cancer. She had a different mutation and that mutation wasn't found in enough people to warrant the amount of investment in a targeted therapy that it should have. And so Anne hooked me up with this wonderful woman, Marsha Horne, who's the head of ICANN, which is the International Cancer Advocacy Network, and she was like you have to talk to her. And this is happening at the exact same time that I'm meeting with my oncologist for the first time at the City of Hope. And so I get out of that meeting and he says I just have a feeling, I know what this is, but we have to send this out for genetic testing to see how to, if we can target therapy. And so he goes, and then tomorrow you're going to do a PET scan and the next day you're going to do a brain MRI. And I was like, wow, I'm going to be at the city of hope quite a bit, Okay. So I leave and Marsha calls me and she says I just talked to Ann and I want you to know there's two names in the game with this kind of cancer Dr Nishan at City of Hope and a doctor at MD Anderson and I said, oh my God, I'm Dr Nishan's patient.

Jessie Creel 17:37

I said I was just with him for two hours. How did that happen? I have no idea. I said I was just with him for two hours. How did that happen? I have no idea. I have absolutely no idea. But it made me think, oh my God, how do we multiply him so that the poor OBGYN in rural Idaho isn't doing a bronchoscopy on a patient, you know, because of healthcare access, trying to cover it all and realizing like, oh my God, like I got the like LeBron James of this cancer. So I was kind of like, wow, you know, amazed. And then the PET scan revealed that I had some bone mets. The brain MRI revealed that I had six spots in my brain, because apparently the cancer goes to the most fertile place first, which happened to be my brain.

Jennifer Coronado 18:25

Of course.

Jessie Creel 18:26

And so I was like, yes, thank you, trying to see the silver lining in everything. But my whole goal was to get clearance to go to Austin and to see my grandma. So I get the clearance. We're sitting with Dr Nishan and he's like so sweet. But you know, like this is the guy who graduated top of his medical class and like he's just on it and he's also a blood doctor and I have a blood disorder. So he's always seeing that in the background and it's amazing.

Jessie Creel 18:56

And I have to give props to the woman who runs my general, my GP's office, because she hand delivered all my medical files Chantelle Shore, coco is her nickname and she drove the files over. And Dr Nishan goes who are you? I've never had files delivered by hand before. As soon as, like they learned of the diagnosis, they like she was on it, like she was just like whatever you need, she waited till I was out of that appointment, um, but so Friday he's like yeah, you can go to Austin and I go is, are you telling me this because it's the last time he goes? No, I want you to go next year too. And I was like, hmm, okay, like I'm gonna take that as a positive sign and I'm going to let that seed grow.

Jennifer Coronado 19:44

And you should, because another thing that people don't know about severe illnesses is a big part of it is the head game. So if we're going to go back to Caitlin Clark and we're talking about athletics, athletics is physical, it is a head game and it's the same thing with combating an illness right. So you have to feel like you have the possibilities or it can really take you down.

Jessie Creel 20:11

Hope. And guess what? Guess what nurtures a good hope is my Zoloft prescription and having the Klonopin when I start to go down those really dark alleys, or having, you know, the breathing treatment when I become short of breath, having my inhaler. Having access to millennial doctors by the way, dr Coley and Dr Nishan both give me their, their um cell phone numbers and I can call them anytime. That is a new thing. That is a wall coming down between the hierarchy of patient and doctor and I call them by their first name. You know what I mean. It's just wonderful.

Jennifer Coronado 20:55

And sometimes that's you, jessie, I have to say, sometimes that's you, you just bring that out of people.

Jessie Creel 21:01

I broke them, but I will also say that they really, both of them, believe we deserve better in this country healthcare-wise, and we do. And so I was like raging, you know, because it was right after the election and I was going to Texas and I was like, but I was going to Austin, so thank God, but I was just like raging about it all and I said something like I just can't believe how hard it is to advocate for yourself as a woman in this healthcare world. And Dr Nishan looked at me and he goes. You know what the hardest hit group by that is the black women with sickle cell who are not believed. And he goes, and I've seen it firsthand. If I could have magic wand to, like you know, flip the switch, I would. And, my God, like our patients, what they're telling us is is first in line, you know, and everything else we do is supporting of that narrative, and that goes back to the head game thing that you were talking about. Of that narrative, and that goes back to the head game thing that you were talking about, which, again, like I know, you know I'm facing mortality.

Jessie Creel 22:09

What I had to decide pretty early on part of me leaving the cave and meeting my mentors, of which I have the most amazing team and Wajidzki is like you know.

Jessie Creel 22:16

Marsha Horn is the woman to talk to whenever you're feeling down, because she knows what studies are coming down the pike and she knows what trials you can get into. And she knows Dr Nishan and she knows me and all of this wonderful stuff. But I was just like I'm meeting my mentors and tomorrow I start chemo, which I'm looking at as my time in the underworld. You know where the hero's journey goes, into the bottom. The mentors send you in and then you go and you start learning what your magical power is at the end and you go back to the cave with it and you help serve others. That's the story of a thousand faces. And yes, for me to put myself on that, I drew that for my sisters when they found out. I drew that for Matt. I've drawn it in Pac-Man terms for my kids. But I think that putting yourself in the bigger picture of humanity for a fight like this also helps alleviate some of the pressure on it, because it doesn't feel so individual.

Jessie Creel 23:19

It doesn't feel so individual. I really feel so individual. I really draw the line at having to console other people over my diagnosis, because that takes energy uh-huh, I totally agree, and here's, here's the thing, and you can answer this or not.

Jennifer Coronado 23:32

Yeah, but you mentioned your kids. Yes, and you have three kids beautiful, lovely, different humans, yes, and human beings in their own right, as Judge John Honchun would say on his podcast yes, yes, yes. And they're pretty young. So you talked about talking about this journey in Pac-Man terms. How did you tell your kids?

Telling the Children About Cancer

Jessie Creel 23:56

So you know what's funny I told my kids through a Zen story called the Farmer's Luck. It is the story of a man whose son breaks his leg and this guy comes over and says what bad luck you have. And he goes, we'll see. And then the next thing happens, you know there's a sequence of events and the son doesn't end up having to go off to war because of all of this that happened, which had been such bad luck, and the dad was unwilling to commit to feed either side of that. I think that, like you know, there's a patience in the question, and so I read my kids that story and they had dealt with me coughing for five months. I read my kids that story and they had dealt with me coughing for five months and I said you know what, guys, my cough is the farmer's son's broken leg, because most people with this cancer don't have a cough and they don't have a sign, and so they wait and they wait and they wait and it, you know, gets a lot worse for them. And I said so I want you to see that this cough that's in your memory from camping and from all these trips, like it was a blessing in disguise and it was echoed by the City of Hope doctors who said we actually have something we can like. You haven't heard me cough that much, right? That's amazing, like I never would have dreamt that pre to Greece. So I couldn't get through one sentence without coughing. I'm probably going to start coughing now.

Jessie Creel 25:25

But I had three completely different reactions. Um, my 10 year old said like okay, like okay, I'm glad we have this information. And I said yeah. And I said Clemmie, your best friend, cecilia, her dad information. And I said yeah. And I said Clemmie, your best friend, cecilia, her dad, andrew, the studio I'm in, survived leukemia 20 years ago and got pulled off a rock tour. I really am going to prop comic it now, because if you want that story, it's his book Three Pianos, which is amazing, and he has this foundation called Dear Jack and they just raised $1.2 million this past year for adolescents and young adults facing a cancer diagnosis. And I said and he got through it. And I said and your friend, you have another friend in your class whose mom had cancer and she got through it. And Clemmie goes yeah, that's right, and you're as tough as they are. So that was that was.

Jessie Creel 26:21

You know how she dealt with it and she's stoic and she's an athlete and she's just like, just even keeled right my middle said well, their cancers, their cancer, like how are their cancers? Similar to yours, my seven-year-old, who did two laps around kindergarten and has thoughts of why are we made of stardust? Like how do we know dinosaurs looked like that, like you know, like she has these big thoughts and then it's like doesn't want to use the and and in sentences at school, like. So she asked me the hardest questions. And Josie, my five-year-old, named after that Josie Wales. He said can I watch TV now Because he's little? He's little, he's in kindergarten.

Jessie Creel 27:03

I had to have conversations at their age but I had to not cheat any of them out of the, out of the realness of what we're experiencing as a family. But I wasn't gonna like like I wasn't gonna take their childhood wonder, I wasn't gonna give take their childhood wonder, I wasn't going to give them anxiety. And I very quickly said you know what? I've never smoked, but even if I smoked three packs a day, you don't deserve cancer. Said we're not going to start judging people's behavior. I said that didn't work in the AIDS epidemic and it's not going to work for this. And they were like what's AIDS? And then we went down that whole thing but yeah, so like that. But then I thought like what is something that we can do? But what is AIDS is like? Oh my God, what a miraculous question. When I was growing up I never thought that would be a question.

Jennifer Coronado 27:54

I thought it would steal all of us. Yeah.

Jessie Creel 27:57

Yeah, the shame game, and just this, like living in, oh, so, like, what a question. And that gave me like this. But then I said, you know what, like you know, um, that's, that's what we'll do. And so that's what we did. And then they were like, well, we got shot, so don't we get ice cream now? And I was like, oh, they're back to normal, okay, that's good. I had alleviated stuff and then I started the oral medicine and I caught pneumonia yes, um, again, you know. And I was able to get a CT scan and they never get to measure to Griso at 14 days because they don't think it's had a chance to do its work yet. And they already saw that my like pleural effusion, my water around, like everything, had started shrinking. And then I had a brain MRI Friday and my brain mets have gone from peanut M&Ms to M&Ms and it's like holy shit, like so I'm going into chemo in a really good position.

Jennifer Coronado 29:11

Can you talk to me about what Tigriso is? You mentioned it. It's obviously a treatment.

Jessie Creel 29:16

Yeah, so I have the EGFR mutation. Yeah, egfr, and it is basically what caused this cancer. It's as my oncologist says when anybody comes up and says what did you do, like, did you, you know, consoling them. Basically, what people are asking me to do is tell them that they are going to live forever, and that is not something that anyone I mean even the great faiths can't promise that.

Jennifer Coronado 29:46

Right.

Jessie Creel 29:46

So to agree so is funny, because the thing that caused my cancer is why we can target it. It has been developed in the lab and it's been on the market a few years and my oncologist said that in vivo which means in the lab or something Carl or Michelle could correct me Um, but it means basically, like they, they sprinkle the Tegrizo on the cancer cells and they watch the cancer cells just melt, um, and so I take it every day at 7 am. I cannot touch it. The pharmacist said that I have to wear gloves and I yell when I take it. I yell Tagriso, and the whole family knows that I've taken it and they all picture the you know, I mean it's a fun word and you, you know and they all picture um pac-man, and it's become so normal, um, that like, and I'm very, very grateful that it's you know, today and not five years ago, yeah, or 10 years ago yeah and the stuff that's coming down the pike.

Jessie Creel 31:00

Um, I know from my community that I've built quickly or I had built and then I could call on, is really positive. And Dr Coley and Dr Nishan put me in touch with two women who are a few years ahead of me in this and they've been so helpful, a few years ahead of me in this, and they've been so helpful. Um, I have my friend, naima raza, who, um she you might know the name, naima who used to produce for caris wisher, yes, yeah, so she made a podcast for me with her friend feday, um all for me, which was 30 minutes of Fede giving she's a year out, she's a year ahead of me advice and she's a mom of three kids and it was the most beautiful thing. My husband and I are listening to it. I look over and he's sobbing. He's like I'd never seen such a beautiful gift that they would give themselves to you like this to give you information, and I was like we can share it and that was amazing. I've never met Sede but we have been so close since then and she's like you know what, take your hypothalamus and make it an animal and I said, okay, I'll make it my favorite dog ever, hooch, who was like the mayor of any city but sometimes would get so scared that he'd hide in the corner of a room shaking. And I said that's me. So I'm going to talk to Hooch and she was giving me all these tricks and I was like this community is so amazing and we share so much, so, even though the wisdom, I haven't gone back to the cave, it's kind of like the circle isn't such a neat circle, you know, like we can shout from the underworld and help others on either side. And I think that, yeah, I think it's been. It's really been a tremendous growing experience.

Jessie Creel 32:55

I don't like when people say that my therapist by the way, I've been seeing her for 12 years I'm like a little different. And you called about cancer advice, what? Yeah, exactly yeah. So she said to me because I go, piper, like Dr Walsh is how most people refer to her but I'm like Piper, like it's just my hero's journey, like what are you talking? Like it's just my hero's journey, like I'm going to meet my mentors, I'm going to go. And she goes oh, no, no, no, no, no, no. It is fucked that you have cancer is fucked.

Treatment, Community, and Mental Health

Jessie Creel 33:29

Like I don't want you to be in this denial, like, and she was like calling me out on wow, I was in serious denial but I was like but it's a good place to aim for is to like put myself on that like roundabout, like what can I do? I feel like that's the service of mythology is, we can do it in real time. You know, like Joseph Campbell obviously looked at it backwards but I have found it. You know the patience in the question and the wheel of life and the tensions between light and dark and river and borders and all of these like pairs of opposites and being able to hold things at the same time, the duality of life, like all of these things have really like come up and there's so much a part of like what I love about storytelling that I really feel like there's been a merge between my life's calling my career and how to survive.

Jennifer Coronado 34:19

Yeah, Well, I mean, there's several things in there that I hear like all through this right, and number one is yeah, it is fucked that you have cancer. I think it sucks and I'm going to help you any way I can.

Jessie Creel 34:33

Thank you and. I know you are not just saying that you are the best.

Jennifer Coronado 34:37

But it is your hero's journey, because that's the mental place you choose to launch yourself for how to deal with this, and that's okay too. Yeah, so both can be true. But also, what I hear too, is you've spent a lot of time building a community that, weirdly, has surrounded you in a way. That's very helpful for this journey that you're on. It's insane.

Jessie Creel 35:03

Yeah, I mean like the, you know the, just the, when breath becomes air. Um, his widow, um blurbed Carl's book projection. So the whole reason I paid attention to Carl's book was because Andy Ward, who's an amazing nonfiction editor at Random House, who's the top of the line there, was on board for Carl's book and I'm a producer enough where I love reading book news manuscript form. This one I had found when it just came out and I saw that Lucy who to say? But unfortunately, like Paul, was stolen from us by this cancer and Lucy had to finish the book. But it was a unbelievable feat that they got this out there.

Jessie Creel 36:07

And a Pulitzer Prize finalist. I mean, it's just such a beautiful book and he's so vulnerable. But he doesn't feel sorry for himself and I definitely am not that good. I definitely feel sorry for myself, especially when the sun goes down. I don't know why it might be my benchmark of okay, another day to fight. You know, I get a little, I get a little sad and it's just, it's unbelievable. They see life and death every day.

Jessie Creel 36:33

Some of my like biggest mentors I got. I may I cuss because one of them today, who I've never heard cuss, who is like the finest human being, married, father of three girls. His wife is just amazing. They're just rock stars. His wife's on the board of Planned Parenthood up your way, so we love them. And he said today's your reminder to fuck everyone and fuck everything and just get better. And I was like, wow, like that's coming from someone I revere and like this is kind of the message that I'm getting now and so I'm looking at this podcast as kind of my like closing message before I go into the fight, of my like closing message before I go into the fight. Yeah, and I appreciate you giving me the time to do that. I didn't realize the such close relationship between cancer and mental health and it's going to give us a new POV for our scripted series. Yeah, and I said to Carl like you know, how much did you leave out of the book with cancer patients? And he's like probably as much as what's in the book. I said okay, well, that's a new call for me. I'm hearing it. I'm hearing it loud and clear.

Jessie Creel 37:46

His wife is a MacArthur Genius Award winner because of her work in cancer, pediatric oncology, and the biggest gift of all that she gave me is that she has now so she does pediatric brain cancer. But because of our friendship and this, she has now started studying non-smell cell lung cancer in her lab, which is just unbelievable because she's got a brain that I mean I'm surprised it fits in her head. To be honest with you, I mean she is just brilliant and she's creative as hell and compassionate and she's an amazing physician, and now she's going to be able to dedicate her huge lab to seeing the neuroscience of cancer, which is what she's a pioneer in. And what she has really discovered is that cancer is really a microscope of human biology. And you could she was became the expert on long COVID because of her knowledge of brain cancer and addiction and all of these things. And so what, like I hope to come from all of this too, is that you know we can harness technology to really start to understand human biology and get in front of these things, um, and get in front of these things in in um, in the sociological way too. Yeah, you know like say like, oh, my god, there's not a hospital there for like a hundred miles. Like, um, let's build one. And you know, let's make sure let's pay somebody enough to live there and serve them. Or you know what I mean. There's just so much solutions Like people don't need a bigger plane, they don't need a bigger yacht. How rich is too rich is a question Naima is going to handle on her new podcast. But like I'm starting to sniff it pretty that there's a lot of people who are too rich and so, like I, there's this clarity that comes with cancer of like well, if I think I'm going to survive, my God, it's such a gift to be here, like it's a gift to survive. How am I going to give back Now?

Jessie Creel 39:48

Andrew, in his wonderful book prop comicking again, did not have it so easy. He took his last dose of chemo with a shot of jägermeister and he talks about the dark expectations put on you, or the light expectations that cause a darkness put on you when you survive an illness, like he did, um and so like that is helpful too. And when I was diagnosed I called him. He came over and I cried in his arms for an hour and he was like I feel bad for the disease that meets your body. He goes, I, like you know he just said he goes, jesse, like we've got you. And then he introduced me this is an amazing prop comedy to we got this, where he bid on this ring for me that says we Got this, it's lit.

Jessie Creel 40:42

So I joke to my Lakers, people that don't be jealous. But so this is an amazing organization that offers registries for cancer patients, so like things they might need, and so I don't mean to like promote it. I have, very fortunately, been surrounded by so much. I live on a like we live on a tiny, I mean a congested street, but we're all so close and I can't even I was dropped off so much homemade broth yesterday that like I have to store it in neighbor's fridges, like I am inundated with things. So people are saying like how can they like, what can they send? And I'm like, no, go go buy somebody a juicer in my name on this registry.

Jennifer Coronado 41:29

Hold that a little closer to the camera. I want people to be able to see that we got this.

Jessie Creel 41:32

Yeah, I'm like go and do you know what, like in my name or in somebody's name who had cancer or another horrible disease or had to face mortality from addiction or whatever, like go and just like give that way, because we live in a 1400 square foot house and we, like I really can't take anything more, Like I cannot take anything more on. In fact, we have people coming tomorrow called the germicidal maids and they are coming to like I'm going a little control freak and they're coming to like Q-tip our vents. You know, I just want to come back from chemo tomorrow afternoon or tomorrow evening, get in my bed and know that like we're set up for success. I mean, come on, Do you need that? Probably not, but it's my mental game.

Jennifer Coronado 42:20

It's partially mental. Going back to the sociology of illness, the thing that I want to say that I think is super important is we tend to like punish people for being sick as a society, yeah, like we put a scarlet letter on them. Illness we need to not bankrupt people through illness. There are so many things that we can do as a society to just help our fellow human beings. One of my favorite writers is Kurt Vonnegut, of course, and he talked about and I can't remember, I think it was in one of his essays and it was about what if we divided humanity into groups and you're all responsible for A? Everybody in A group has to help everybody in a group. So if you see somebody struggling in a group, that's your responsibility and that's why you don't feel responsible for everybody, but there's always somebody caretaking for somebody, right, yeah? And I feel, I personally feel that that is why we are here as humans on this planet. We are here to help and support other people and engage with other people, and if we get other stuff out of it.

Jessie Creel 43:43

Orders are imaginary. Yeah, great.

Jennifer Coronado 43:47

But the feeling you get from being part of a community and helping other people through things is something that could benefit so many people who I think get disconnected right.

Jessie Creel 44:00

Oh yeah, absolutely. I think that you know. I think Kurt Vonnegut oh my God, did you see his documentary Magical? And that's a reminder that this was a deeply depressed man who lived on the hedge of comedy. You know what I mean. He found that tension and I feel like anybody like I have.

Jessie Creel 44:23

I can have deep moments of melancholy, I can relate to that and where he was like just so funny, was like where you'd stop and say like, if this isn't nice, I don't know what is, you know just these reminders, or the fact that I this is going to go on record I the no shame in our lice game. We've had lice six times in the past 12 months. And I Matt was like, oh, I'm going to make a nice dinner. You know it'll be like the last dinner before you start this. You know we start this fight. We're going to sit as a family. And he called me before the podcast started and he goes uh, I need the name of our lice lady. I just got a call from school. All three kids have knits in their hair. So, uh, we are going to be doing that for dinner. And it's like laugh, you know, like laugh, you make plans and God laugh.

Jennifer Coronado 45:15

Exactly Right.

Jessie Creel 45:15

And you know, and so it was like I could romanticize this night, or I can realize I'm a mom of three who you know, life happens, so, um, I I want to like I know that we're going short on time, and so I want to like be able to read the.

Jennifer Coronado 45:35

I can thing for people.

Five Essential Tips for Cancer Patients

Jessie Creel 45:36

Yes, please do. I hope that anyone facing a diagnosis like this can get their body into the fight state in a way that keeps their nervous system calm. And I think the first phone call should be to a therapist and a psychiatrist, because we cannot do this alone. And if I did not have my Zoloft prescription or my therapist, piper, or my nurse practitioner, patty or Carl, a text away, I would not be as strong, and everyone deserves this strength. I really, really believe it. We are a very isolated population. Loneliness is at the top. I can say that, yeah, I think Kurt Vonnegut's essay, I know exactly what you're talking about. I think religion operated in that space for a long time but created really tough boundaries between the groups and and really that coming down has been, has been, a beautiful thing, but nothing, not much, not enough, has replaced it, and so I I couldn't agree more.

Jessie Creel 46:46

Yeah, and I really I think what I've seen is like the cancer community takes care of each other. Like I, you know, anonymously, like not anonymously, I someone called me and said hey, I know you're going through shit right now, but I have a friend who has a cough who's at the hospital and nobody will listen to her, and can you talk to her? And I said I can talk to her and I'm going to get her a good doctor. She starts chemo tomorrow with me at the same place.

Jennifer Coronado 47:10

Wow.

Jessie Creel 47:11

This was the week before Christmas, so the like, and I had never met her. So the point is see yourself in others. You know what I mean. Like, what cancer has taught me is it's so much bigger than that. This is a blip. We're going to get through it and like we're going to help each other.

Jennifer Coronado 47:28

That's what we have to do. Yeah, we have to do that.

Jessie Creel 47:30

And so here's five tips. I feel like Letterman, but here's yeah, here's five tips. So know your biomarker. This is the five principles of ICAM, international Cancer Advocacy Network, given to me by Marsha Horn for cancer patients and specifically in getting, if you are in a healthcare desert, get out of it, and these are ways that you can get out of it. So know your biomarker. If you can't describe your biomarker, maybe your cancer hasn't been analyzed fully. But you need to know your driver mutation or biomarker and memorize what that is. Breast cancer patients it could be HER2 positive, non-small cell lung cancer patients like me. Egfr mutated, with a particular mutation found in many never smokers who've done everything right and who are very physically fit. Thanks, marsha, for writing that little compliment. So you know pancreatic cancer are you crass? Pronounce K-R-A-AS. There's just so much wisdom there. So just remember biomarker and Google it Like we all have Google, I hope, my God Okay.

Jessie Creel 48:44

Second opinions are key. 90% of cancer patients are treated by community oncologists, but not every community oncology center has time for or research infrastructure to conduct a clinical trial. So call ICANN and get your name on the list, because they will get to conduct a clinical trial. So call ICANN and get your name on the list, because they will get you into clinical trials and they will get you approved within three or four days where insurance would take four weeks. This is an advocacy network and they raise money to do this and Dr Nishan knows them. They're just. They're just a really. And they, you know, granted money to Dr to Michelle's lab at Stanford. They're just a really. And they, you know, granted money to Michelle's lab at Stanford. They're just an incredible organization. I didn't even know they existed before I had cancer.

Jessie Creel 49:23

Number three is clinical trials and compassionate use. Virtually every commonly diagnosed cancer and many cancers with ultra-rare biomarker-driven cancer are the focus of clinical trials in the US and abroad. The topic of what clinical trials are you most interested in for me should be broached at each appointment with your oncologist where your disease has grown and your team urgently needs to find a different treatment going forward. This is a huge reminder that you are your own best advocate. It's also a reminder that you don't have to be married. You don't have to have a spouse by your side, but, my God, bring someone along, because sometimes, when shit hits the fan, you have like your questions fly out of your face. You know what I mean. You're just like what you like. Watch them float away.

Jessie Creel 50:09

Then, number four communication with the oncology team. Nothing is more important than open communication with your oncologist and oncology nursing staff at the medical center where you are getting treatment. Show gratitude to everyone each time you're with them your oncologist, the team and the infusion nurses. Don't ever ask about life expectancy. Because of the robustness of the drug pipeline and because of more and more options nowadays for cancer patients virtually every cancer they really cannot make an educated guess. The goal is optimizing your survival and your quality of life. Side effects Don't be a hero. Report. Medicine has come along so much that they want to help you. There's not. We're trying to recede the idea of nobility of suffering. They're going to load me up tomorrow for an hour and a half with pre-drugs to help get me through the chemo drugs and then on Friday do it again. They want this to be not blissful. It's not going to be like a ayahuasca retreat.

Jennifer Coronado 51:14

Yeah, you're not getting a facial Right.

Jessie Creel 51:15

I mean, it is not getting a facial, right, I mean, it is so amazing in 2024. Now I'm going to tell, I'm going to add a number six because you know me and my opinion. So the oncology nurse said don't get pregnant. And I said, of course not, like that's not a possibility for me, but like that sounds really scary. During chemo, what happens when a stage four metastatic patient comes in pregnant? And she says, well, in California we're okay, but in a lot of the country the fetus now drives the decision. And to me I'm thinking, oh, that seems like a really big problem. And so I hope that these conversations now I am a big believer, I'm a oh my God, I couldn't be more pro choice because I'm getting to make every decision informed consent, super informed consent.

Healthcare Rights and Final Thoughts

Jessie Creel 52:19

But like the idea that a woman would have to face that is despicable and it's just, it just launches me into like so much of of my again. That's like combined, like everything seems to be weaving itself together and making sense. But here's a, here's an absolute area where it hit me in the face like this is something that like for the first time. It's like, yeah, if I don't want to have a kid, I'm not gonna have a kid. I did in vitro, like I'm just not gonna have a kid, um, but yeah, it was.

Jessie Creel 52:55

Oh my God, like it does affect everyone. You know, like, if this isn't an us versus them, this isn't me giving a Planned Parenthood, being like like girls, I got your back. This is like a major violation of my human rights. Um, and, and seeing it firsthand, so bodily autonomy, like it, it just it. It shook me and I wanted to make sure to use this platform to be like, hey, everyone who's voting for people who are pro-life which is not a term I like to use, because being pro-life and cancer is is being on the side of the cancer patient. But, um, I, I want you to elect people who let women decide what's best for their body and let their doctors decide. You know, don't let these fat cats in Washington decide. Fat cats, what am I?

Jennifer Coronado 53:48

like, mickey Rooney, but you know what I mean, mr Smith.

Jessie Creel 53:52

Yeah, exactly, exactly. Oh my God, jimmy Stewart. I won't give you my Jimmy Stewart impression, but Mary Mary, you did that.

Jessie Creel 54:01

There it is I know I can't, I can't, I didn't, sorry, um, but anyway, I just wanted to like tell you guys how much I loved you. I love your podcast. I don't miss it. I'm so grateful these creative souls are out there. Don't miss it. I'm so grateful these creative souls are out there. I'm so grateful that you go from interviewing the cast of Wicked to interviewing me. I just I feel honored to be able to share this story. Yeah, I just I feel like there's no shame in this game and I'm living this out loud as much as I can. If it starts to take too much energy doing so, I won't. But for right now, I am buoyed by my community, my medical team, my friends, my family and yeah and I'm looking at this as the washed up jock that I am like a big swim meet tomorrow. Okay, let's go, let's do this.

Jennifer Coronado 54:57

Yeah, well, the thing that I want to say to you, as a sort of final wrap up which, that is, a better wrap up than I could ever do is, when it gets dark and the day starts to end, just remember that there is sunshine tomorrow and that the sun does come up, you know.

Jessie Creel 55:14

That helps me so much. And we are at the time of the year when the days are getting longer, yeah, and I tell my kids every day that I have less cancer today than I did yesterday, and I will have less cancer tomorrow, and that's our meditation. I can't promise anything else, but I can promise that else, but I can promise that. And so that is you know what. I hope we all, um, we all can take some sort of format of that. Um, you know and and understand that like, yeah, this is, this is what's happening.

Jessie Creel 55:48

And I had a little bit of guilt that that I was doing this to my kids, um, and then I was like, no, this is going to make them awesome, like look at you, jen, like you were like out there because you, you saw firsthand what it was like, and you are constantly like helping I don't want to say the downtrodden because again, apparently I'm in a time machine like really far back, You're out there, like you're out there always, like helping the people whose voices need to be amplified. And that's from a deep sense of empathy and that is earned, from having been close to a parent who is really ill. And so you know, is it something you wish upon your kid. No, but like, let's, let's take the. You know they're going to be tough cookies, yeah.

Jessie Creel 56:36

And they have amazing friends so far. They think cancer is pretty rad. They got to go to a Lakers game and then, you know like I mean, they just think they're like, wow, what we got sent this. Like, oh, my God wait, we get to eat cake for dinner. What? They're Pavlovian a little bit. But things are going to get real for them soon enough and I am going to need my community and I'm grateful that you and Erin are in it, and thank you for letting me bloviate for another hour on this podcast. Yeah, I will be kicking cancer's ass in the meantime.

Jennifer Coronado 57:11

Well, I think that the thing that I will say about illnesses, because, my mom had multiple myeloma and to me and she didn't have health insurance and it was very difficult and it was pre-ACA and I was in the room when she passed and I felt her heart stop beating and I thought then it is not fair for people to have to go through things like this without the care they need and we need to do better. So I appreciate you sharing it.

Jessie Creel 57:42

Well, I love you for sharing that too, and if you ever want to do a second podcast with me, we can go toe to toe with these insurance people I'd love to talk to some of them. Yeah, with these insurance people I'd love to talk to some of them yeah, boy, you're not kidding, I mean my God. Anyway, I love you guys. Thank you so much.

Jennifer Coronado 58:05

Love you too, jesse. Thank you for listening to everyone is. Everyone is is produced and edited by Chris Hawkinson, executive producer is Aaron Dussault, music by Doug Infinite. Our logo and graphic design is by Harrison Parker and I'm Jen Coronado. Everyone Is is a slightly disappointed Productions production dropping every other Thursday, so make sure to rate and review and like and subscribe. Thanks for listening.