Hope Forward

I Never Thought I Could Get Lung Cancer | Samantha's Story

• Rexanna's Foundation

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#006 Samantha did everything right -- regular screenings, healthy lifestyle, and a non-smoker. Then she was diagnosed with lung cancer.

In this conversation, Samantha opens up about the misconceptions surrounding lung cancer, why biomarker testing is important, the power of second opinions, and how community has carried her through the hardest moments.

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SPEAKER_01

I honestly thought lung cancer was the only cancer I wasn't susceptible to. There's a big m misunderstanding out there that lung cancer is a smoker's cancer, and that's very much not necessarily the case at all. I was very on top of all my screenings, being aware of all these other cancers that might impact me. Lung cancer was not on my radar. There are many otherwise healthy, athletic individuals, non-smokers as well, who um get lung cancer. And I still think there's not enough education out there to make people aware, the general public, that lung cancer can literally impact anyone.

SPEAKER_00

Welcome to the Hope Forward Podcast. I am super excited you guys are here today. I'm Lisa Spain, the executive director of Rexana's Foundation. And boy, do we have a special day for you today. I am so excited. For those of you that are listening, thanks so much for joining us. And today we're so blessed, oh my gosh, to have my sweet friend with me, Savannah. Savannah, I can't even say your name. That's how nervous I am. Sorry. You make me nervous, Samantha. Samantha Merle. I am so glad that you're joining us here today.

SPEAKER_01

Thank you. Really happy to be here. Excited to share my journey, experience, and see if I can help other people at the same time. Samantha Morel, as Lisa said, uh patient advocate located in Utah.

SPEAKER_00

Yay. Well, I'm not gonna spend a whole lot of time on introductions because I have so many questions for you and I want to learn so much about your journey and learn from you. But I'm just gonna start off. Why don't you just tell us a little bit more about yourself?

SPEAKER_01

Sure. Um, so I am currently 39 years old, um, married for nearly 10 years to a wonderful man who was active duty army for over 21 years. He just retired. Um, my career has always been in public safety um and software development for public safety. Uh, and I have a wonderful German shepherd called Opie, who's nearly 11 years old. And I am an outdoor adventurer explorer. So, whether that be hiking, paddle boarding, just camping, backpacking, being outdoors, exploring nature, that is my happy place.

SPEAKER_00

Awesome. Well, we're definitely gonna have to talk about hiking trails because yes. Love to hike. Of course, I've seen some of the photos of you hiking, and I don't think those are the same levels of hikes that I'm on. I have a lot of work to do to get in better shape to be able to do that. But you guys that are joining us, you know that at Rexana's Foundation, part of our mission is to support and love and be there in the journey for patients and their families. And our Hope Forward community is just an extension of that. You know, our whole goal is that this community reduces the isolationism and it really brings some comfort and some education and sustability, maybe just some of that uncertainty. And Samantha, what we do at Hope Forward, usually I have a countdown of three, two, one, kind of a pattern we follow. But today I'm gonna break the rules and I'm just gonna jump in asking you questions. And at the very end, we'll do a kind of a speed round with our three two ones. All right. Okay, sounds good. Okay, so I want to start off by just um letting you educate me and our other people that are here listening a little bit more about the lung cancer diagnosis. So that's kind of be the theme of some of my questions right now, okay? And the first thing I want you to do is tell me a little bit about misconceptions of lung cancer that you wish people understood better.

SPEAKER_01

So I think the biggest misconception, you know, when I was diagnosed with lung cancer um with a HER2 mutation, I um I honestly thought lung cancer was the only cancer I wasn't susceptible to. There's a big m misunderstanding out there that lung cancer is a smoker's cancer, and that's very much not necessarily the case at all. I was very on top of all of my screenings, being aware of all these other cancers that might impact me. Lung cancer was not on my radar. There are many otherwise healthy, athletic individuals, non-smokers as well, who get lung cancer. And I still think there's not enough education out there to make people aware, the general public, that lung cancer can literally impact anyone. Anyone with lungs can get lung cancer, is kind of the saying. But that really is the case. And I still don't think if you polled people on the street, they would think that lung cancer might be something they would need to consider as something that they might get.

SPEAKER_00

Yeah, I agree with you completely. You know, Rexana's foundation's name for Rexana Hawkins, and she was a never smoker and diagnosed at the age of 47, 2006. And back then, um, it it was just horrific being diagnosed with lung cancer, and there was so little opportunity for treatments, and there was so little out there. So I know sometimes when I talk to patients, I have to warn them and temper them that my excitement over the opportunities are based on a 20-year history. Whereas sometimes from your perspective, it's like, hold on, time out, right? And I've seen the evolution. But I think that is important for people to know that we have accelerated the research, but we've got to do more where people understand if you breathe, you've got lungs, you have the opportunity to be diagnosed with lung cancer. Tell me about the biomarkers. So many people, you know, don't understand that. So, did you have any knowledge at all about biomarkers or genetic testing or personalized medicine before you got into this journey?

SPEAKER_01

So I very much knew about genetic testing because I um actually had some genetic testing done on myself when I was in my mid-20s because I kept on getting injured for ridiculous reasons. And they actually did some genetic testing on me to check for connective tissue disorders. And I actually ended up getting one, um, having one. So I I knew all about genetic testing. Uh, biomarkers was something I'd never heard of. Um, but as soon as I got diagnosed with lung cancer and I started researching lung cancer, different mutations kept prop popping up. EGFR and ALC in particular, which are two mutations that one can possibly get. And uh that led me down the rabbit hole of this biomarker testing, figuring out if you have a biomarker that's actionable. I still think there's a lot of confusion in the industry when it comes to biomarkers, in the sense of when you do end up having a biomarker, were you actually born with this? Um, have you had it since birth, or is it something that you got? And so I think there's still a lack of understanding in that area. But of course, it's something that you didn't inherit, you didn't genetically have it. Like biomarkers is something that you got that caused your cancer. But uh very well versed now in biomarker testing, I make sure that anyone newly diagnosed that I uh come into contact with makes sure that they have had biomarker testing because there's still areas of the country and in different hospitals that aren't doing biomarker testing for lung cancer. Um, and it's also not necessarily approved by insurance in some states. So it's a really important item because essentially it unlocks a selection of treatment options for you if you have certain biomarkers.

SPEAKER_00

Yeah, I think that's what's critical. We have to have people know because you're exactly right. It depends on where you're treated, who your oncologist is, what resources they have available to them, the educational levels that they have received extensively, I think makes a huge difference for the opportunities, right? Well, tell me, tell us the specific type of lung cancer that you have, and tell us about your education around that since you were so Yeah.

SPEAKER_01

So I got my liquid, I got a liquid biopsy done, and um that comes back normally quicker than the tissue biopsy to look for mutations, and um I came up with it said ERBB2 on the report, and I had never heard of it. I didn't know what that was. I started to spiral because I thought I'd educated myself on every mutation fusion that was out there, and so I researched it in Google, which was a really bad idea at the time. Learned, you know, the first thing you type in ERBB2, it comes up with her two, her two mutation, but then it talks a lot about breast cancer, right? So then you're even more confused because you're like, I have lung cancer, but come to find out, obviously it's it's different. This is a specific mutation. So honestly, I was really spiraling initially because um, you know, who HER2 is in two to four percent of lung cancers. It's extremely rare. I did not know a single person that had it, even in the groups that I had been introduced to. So I just felt, honestly, I felt really hopeless. I was in a panic. And it just happened to be that I got put in touch with various people as soon as I was told that I had her too, and they very much talked me off a ledge. Um, uh gave me a lot of hope on what was coming at the time I was diagnosed um spring of 2024. Okay. So a lot of things were on the cusp of uh trials, and uh, so my mindset kind of changed. But you know, Google says poor prognosis, says not great, not good, aggressive, all of these things. And you know, I'm sure we'll talk about it, but over the past two years, things have really changed. Those Google terminology should change soon. But uh initially it was not a good mental place for me to be in knowing I had her too.

SPEAKER_00

Yeah. Well, I mean, you're touching on so many things, and in a few minutes we'll talk a little bit about the mental perspective, right? But um, I do want to lean into this a little bit more because that is one of the first things I tell people, please don't start Googling everything because you've already just received a diagnosis that, you know, is not what anybody wants to hear, right? And then all of a sudden you start Googling and it starts just really making you spiral. I, though, what I want to lean into what you said about everybody kept telling you to wait. There's something on the horizon because I feel like I spend every single day. You know, earlier today, we were even in conversation. I was like, there's so much hope around the corner that research is evolving constantly, you know? And if you don't know what's out there, it's still coming. You've got to trust that. And I do you want to speak to that a little bit more? Because it's so important to understand people aren't kidding when they tell you just wait because the research is evolving so quickly.

SPEAKER_01

Yeah, absolutely. I I think it's really important when you're diagnosed to latch onto those things that could provide you hope. Um, it's imperative for your mental health. Um, if you don't think there's any hope, it's really hard to get through um the day-to-day. But knowing that there are things on the horizon coming, even now, you know, like things have been approved, more things are on the horizon, it honestly keeps me focused, keeps me going. And, you know, I'm in, as you know, in the weeds a lot more than most people with my diagnosis. And so from my education, I can provide hope to other people that might not be aware of certain things being done. And uh just grasping onto that is everything. All I say though is to these people doing, you know, providing hope is will you hurry up? But I but I know that things take time and there's rules and regulations and everything. But um, you know, it it does provide a lot of hope though, but it's also like I'm a patient right now, I would like this right now. Let's let's hurry this up too. Yeah.

SPEAKER_00

I don't think I ever talk to a single patient that's not like, where is it now? Let's get it, what's taking so long, you know? And that is what the hard part is, right? Absolutely. Yeah, for sure. But some of the reasons, and I know you kind of just alluded to it just now, but some of those readings are making sure it is safe on the side, making sure that they have taken it to every level of efficacy before it reaches the patients. Having served on so many different grant writing teams and being a patient advocate, you know, when they're looking at the levels of just impact on the patient, I think that that's really important too. But I'm with you. Sometimes I think some of the hoops that they have to go through for the FDA approval make me crazy. So I go I get that completely. So tell me, let's talk a little bit about what role second opinions and specialized cancer centers played in your journey.

SPEAKER_01

Wow. Um, all I want to say is life-changing. Um, you know, I go to an NCI hospital, it's incredible. I love my team, I love everything about it. But her two is so rare that I believe they only have a handful of patients, and they cannot be experts in my very, very specific mutation. And so it was critical to me that I be connected with someone who specialized specifically in my HER2 mutation. You know, they just they're in the research more, specifically around HER2. They know the drugs more, they just know everything more. And so to not have that as part of your team, I think is a really unfortunate circumstance because they can know something very unique and special that maybe your other uh main oncologists might not know because they're just not in the weeds every day. And that can be a game changer. And so second opinions are everything to me, third opinions, fourth opinions. I agree. I know some people that are on the on the like their fifth opinions. Um what I like about it is the oncologists really collaborate with with each other. It's not, I haven't found any situations. Well, I'm sure there maybe is somewhere, but they collaborate, they bounce things off of each other, they have conversations. And so to me, knowing that I have what I like to call like my tribe of doctors bouncing off thoughts and ideas specifically for me as a unique individual is everything to me. And I think that if you rely on one oncologist, even if you adore them, which I adore mine, it's one person. And they have hundreds of patients. They can't do everything for you, they can't research everything for you. And so having multiple oncologists is everything. And I highly encourage it, especially um, you know, community hospitals too, while they're amazing, they might not specialize in lung cancer. So they might not even have thoracic speciality. Exactly right. So even if you don't have a mutation, getting a second opinion at a specific thoracic oncology division is also just as important.

SPEAKER_00

Yeah, I I tell you, what I the example I use with with folks is, you know, if you are at a community hospital or another hospital who they could be amazing in their area, but they may only see one or two patients in a year that could be a HER2, you know, lung cancer or an out positive or an Exxon 20 or all these different, you know, specific biomarkers. They may see limited one or two. Yeah, you could go to a research hospital that's very specialized as a cancer center, and they could see a hundred in a week. You know, it's totally different, the enormous numbers and the difference of how they're doing it. Also, they really work from a perspective of a tumor board. So all of the people that specialize in HER2, radiology, surgeons, consolidative therapy, all the different, they are having conversations. So it's cool is just like what you described, as much as you love your oncologist, you've opened this entire team to your oncologists at, you know, your hospital that you're at, you've opened them up to these resources that are amazing to be a collaborator. I tell people if someone's ever hesitant about a second opinion, you need to go move on because you want people in this field of study of any type of cancer, I would say, but you want to have um people that want to collaborate, be experts because there are so many different ways to treat and so much going on in research today. Yeah.

SPEAKER_01

100%. And my biggest thing I want to convey is, you know, even I, who I'm quite outspoken individual, um, was nervous telling my initial oncologist that I wanted that second opinion. And it can feel awkward, right? It feels like you overthink in your head that, oh, maybe this is showing them that I don't really trust them or things like that. Very much not the case. And if you have a good oncologist, they're not gonna care that you're getting a second opinion. In fact, they may might actually really like it. Like I know my oncologist liked that I got a second opinion because he could bounce off of uh another expert. Right? That team. So please don't overthink that at all. If there's a problem with it, you need to just change oncologists. Yeah.

SPEAKER_00

Well, I agree with you completely. And I love how you said don't overthink it, because I think that's important. Here's the other change that that brings up in my mind, too, that I always encourage patients now. We have to change our mindset that you do have to become your own patient advocate. You have to be an advocate for your own care, for your life and what you are dealing with, so they understand how you live and what you want it to look like. Because I'll just look at myself, you know, many of us were raised to be yes, ma'am, no ma'am, please, thank you, all of these value systems. But we were also taught if a doctor said something, it was like, yes, sir, you know, and that's a hard thing. So when you're encouraging patients not to be hesitant for that second opinion because they're feeling like that's gonna be, I would say the same encouragement goes to you need to be willing to challenge the questions, you need to be willing to dive deeper, you need to be willing to say, help me understand. I tell everybody that should be your phrase, help me understand because you need to understand the details of everything that they're telling you. And um, I think that's important too, with that as second opinion to just advocate for yourself.

SPEAKER_01

Yeah, 100%. Um, and I and I always say at the end of the day, it's your life, like you said, it's your life. And um bring up whatever you want to bring up. It's your life, it's your time with your doctor. Um, do it, don't feel uncomfortable, just just do it. Um, you know, I I did an Instagram reel a while back saying like you've changed in quotes. And it's like, yeah, I've changed because I literally have to advocate for my life. And because of actions I have taken, I firmly believe I'll be around longer than planned. And again, it's because I was very vocal. Absolutely. And honestly, that's not really my personality, but I've turned that way because it's my life. And so if people are listening who are maybe more introverted, don't, you know, want to follow whatever the doctor says, find find that inner energy somewhere where it's like, no, I want to have this conversation or that conversation. And oncologists will be receptive, they will listen. And again, if they don't, find another one. Yeah.

SPEAKER_00

I know you have to find your voice. You have to find your voice. You know, I would say, and this makes me think of another thing, is just preparing for appointments. I have spent so much time with patients on how do you prepare for that appointment, what you need to do. I always tell them to write down all of your questions because you get that moment of time and you're frazzled, you are ready. Plus, you could be a deer in headlights. I also encourage them. You can ask the doctor, can I record your response to this question? You know, I mean, anything that you can to help you capture that window of time there. So you're organized, you're prepared, um, and you take some of the emotion out of that moment because it is such an intense moment of every visit. And even when you're receiving good news, it's the stress of waiting for the results, right? Yes. It's just the whole appointment can be very emotional. So, besides preparing in advance, having your questions, networking with others on questions that have been in that journey, asking to record, what would be a suggestion that you would give to a patient, maybe that I've left out on what to do? Prior to those appointments.

SPEAKER_01

I know not everyone can do this, but if you can bring someone along with you. Absolutely. I know that's not the case for everyone, unfortunately, but I, while I have my list of questions, I feel like I interpret everything my doctors are saying in a totally different way than what my husband hears. And I know he hears it more matter-of-fact than I do because I have emotion attached to it. And so while I'm in the appointment in a daze following my questions, I literally debrief with my husband afterwards because I feel like I just wasn't in that appointment. And so if you can bring someone along, whether that be a friend, spouse, what have you, to be able to be that second set of ears, I think that's everything. Like you said, you can also record it, right? If you go alone. But uh I like being able to bounce off what was discussed with the other person.

SPEAKER_00

Yeah, I think that's a great recommendation. And I get it, some people are not, you know, because I think that's the other unknown that people out there do not realize. You know, you always have like the meal trains and all the people at the very beginning, but this journey is multi-years, right? And um, Samantha, we're planning on you living a lot of years ahead of you. You've got a whole life ahead of you, but it is gonna be scans the rest of your life. You know what I mean? There's gonna be a component of checkups that are gonna be there. Sometimes we don't have the ability to have somebody there with us, but I think it's a great recommendation. Yeah. I also think that um now we're doing better jobs of having patient advocates that are available at different institutions. So that's another thing that a patient could ask for is to have a patient advocate. And I would consult with the nurses, the PAs, or anybody to ask if there's somebody that's a patient advocate that could meet there. Because again, that's one of the roles that I fulfill. And I have been a patient advocate for people just to be there and when they do not have someone else. Okay, let's talk about if you could tell caregivers, employers, friends something that you wish they understood about lung cancer, what would it be?

SPEAKER_01

You know, when I saw this question initially when you shared it with me, my I had an instant reaction. Oh wow So my instant reaction is because research has been so incredible in the lung cancer space, there are a lot of people who are doing very well, who are living longer. And to a member of the public, me walking in a supermarket down the street, I look like a completely normal person. And so what I really want those people to know is that we are going through a hell of a lot physically, mentally, emotionally, everything. And I think a lot of times people see us visually as, and I would say this applies to caregivers too. Like people see us visually, they think we're doing amazing. And while I, you know, for myself, I can say I am doing amazing, but that doesn't come with things still, right? Um, and I think it's hard for people to grasp that we're still going through it. It's almost like people just forget. Like you said, a lot of us, not everyone, but a lot of us are living longer and longer. This goes on to multi-years. And so people often forget is not the right word, but it becomes more of a side topic than the topic. And so then they kind of forget what you might be struggling with. And I mean, I have emotional breakdowns maybe once a week. I um, you know, have side effects from my drugs. I'm tired a lot, right? I'm not a in quotes normal person. And and so I want people to know out there that there needs to be some level of understanding that we're still going through a lot, even if it doesn't look like it.

SPEAKER_00

Yeah, and I think that that's a good point because your example made me have just a vivid realization when you were talking about in a supermarket or out somewhere, because um, I know talking to different individuals that are in the fight, they're gonna go out when they're feeling better. Because the second you're feeling better, you want to get out in the real world. You don't want to be thinking about what my next appointment is when I have to do the next drug or anything like that. So you are trying, it's the day then maybe you are putting on makeup or you comb your hair that day, or had one lady tell me that's the day that I'm gonna take a shower and I'm gonna feel like I'm living, right? Right. And so, but I think that is important to know and understand that you're trying your best to be as normal as you possibly can in this chaotic world that you find yourself in, right? And so that's the reason why it looks so different. I guess I'm gonna put you on the spot here. This is a different question, but it does bring up the question because it always comes up to me is so many patients are like the interaction is very different with my friends and people that know me because they're not comfortable in what to say, or it's like, oh my gosh, I don't want it to always be about how are you or what you're doing. And then the patients will somebody sometimes tell me, I don't want it to always be how are you feeling? I want it to be, can we just have a conversation about the latest movie that came out or you know, whatever. So, what would be some of your recommendations or tips that you give to people on what that communication could be like where they're still demonstrating the empathy they know you're still living with this and still helping you be as normal as whatever normal is?

SPEAKER_01

Yeah, that's a great question. My closer friends, you know, they'll call me and check in and they'll ask me how I am, and and it's a genuine how are you? There's a difference between, hi, how are you? I'm fine, how are you? I'm fine, and then you move on, right? And it's a genuine like I am checking in on you, how is everything going? Yes. Um, I think it's important to emphasize those kind of keywords rather than just like, how are you? Yeah, that's really good. And then, you know, we'll talk about it for however long and and then we'll switch to a different topic. And if the person going through the cancer as a patient is the one that's trying to change the topic, go with that. Because we, you know, we we want to start talking about it, we want to go to something else. But I will also say uh as as a lot of my friends like give me grace in the sense of they let me vent, they let me. If the whole conversation is 30 minutes of just talking about cancer, they will let me do it because they know I need to get it out. If they can sense that I don't want to talk about it after they check in with me and I want to change it to subject, they kind of lean on me for that direction. Um, so I think it's important as friends and caregivers to be receptive, feel that kind of energy. How talkative are they? Do they really want to talk about it, or are they kind of feeling forced to talk about it? So it's, you know, kind of feeling that out.

SPEAKER_00

It's sort of I think that's really good advice though, because I think the two things that I heard you say is really if you're gonna check in, really check in authentically and then be ready to listen. And then the second thing I heard you say is just take a lead from the person that's in the fight, right? Of what they want to talk about. Because just like the example I gave, some of my friends that I'm supporting are like, I just want a girls' day, or I just want a day off, or I want, you know, and so um just take a lead from that. So that's really great feedback. Okay, well, let's talk because that transitions us into the next area that I want to talk about is kind of navigating through this journey, you know. And so tell us maybe some of the first practical steps that now that you can look back on it, maybe you can give to others that are being diagnosed with lung cancer. What would be maybe the top three things that you would say that they should consider or they should do upon receiving a diagnosis? Um, biomarker testing.

SPEAKER_01

Yeah, for sure. I'm with you. Definitely the number one because again, it's not always brought up. So 100% biomarker testing. And then once you get those results, whether you have one or you don't have one, research who that who the experts throughout the country might be. Even if you don't have a mutation, but maybe you have a, you know, I have endocarcinoma, maybe you have mucinous or another type of lung cancer. Dive into who might be that expert. It's not hard to find online who those experts are. You can see like who's written papers on the subject, and you can find the experts that way, but they're usually out there. And so getting that second opinion from that expert, I think, is very important. And what's the next thing? I would say give your give yourself grace to grieve. There's a lot of toxic positivity out there. You know, you might hear when you're newly diagnosed, oh, I'm so sorry, but keep positive. You know, it's it will make such a difference in your journey. Just keep positive. And while I do think there's something to be said for finding po I call it pockets of joy, you know, throughout your journey, finding pockets of joy, being happy. You're also allowed to grieve your past life, your previous life, you know, because it really is a change in your entire life. It's okay to cry, it's okay to scream. I remember hiking to a really remote place, and I just screamed at the top of my lungs, just to get some of that energy out, yeah. Um, and that frustration and anger, and it's okay to be sad. It really is. And I think people need to be told that that's okay.

SPEAKER_00

Yeah, all three of those are just amazing advice and things to consider. I think too, just you know, understanding it is a journey, right? It's like a marathon of up and down, you know. Um that patients, you're gonna have moments of great joy when you get a great experience of something happening that you had a moment of joy, whether it's a scan or something happened with your family, but you're gonna have the ups and downs. And I think sometimes for patients, navigating down or an up is very difficult.

unknown

Yeah.

SPEAKER_00

The cadence really throws them off. And so I think doing that.

SPEAKER_01

I think it's go ahead. Yeah, no, I was gonna say it it's absolutely I think someone told me at some point to draw what the emotion felt like of going through this journey. And I literally drew a roller coaster because it really is the ups and downs, you know. Um, I've had progression um during my first line of treatment. I know what that feels like. I know how awful that feels like. I felt like there was no end and you know, no hope again, but then you latch onto this new thing, this new hope, and you're up again. And so uh yeah, it's definitely a roller coaster.

SPEAKER_00

Yeah, and I think that's where the key is is having a support system or people around you or a team that do not let you get too low when you're spiraling in those moments. Okay. Can get back. I know for me, and I would ask for the recommendation because my personality is going to do everything that I can to bring joy to the person that I'm around and be hopeful. I hear all the time what you said. It can't be this toxic joy, you know, and finding it. But what would you say to a person that is just trying to be positive because that's in it their innate personality? How can they balance that by the reality of what you're dealing with?

SPEAKER_01

I think it's I think it's great because um I'm sure other people like myself, we feed off other people's energy. So being around that happiness in turn will make you feel better. But I think, like I said, that that checking in, that true checking in. That's the difference. Um, and allowing that person to cry or or be sad. I I think just that basic check-in allows someone to feel what they're gonna feel, and then you can provide the joy and the hope and everything, right? But that initial check-in is almost checking to see where that person's mental state is. Are they sad right now? Are they happy right now? How do I kind of work with this? Right. Um, and I think that's a good starting point.

SPEAKER_00

Yeah, that's what I've told some of the caregivers before to something very similar. I'm like, you know, listen to where they are in that perspective right then, right? Yes. And if they're hesitant or there's not a feedback, then it's okay for you to say, hey, just because you assume I'm always gonna be positive, I'm okay with you having a down day. Talk to me. I'm okay with you being sad. I'm okay with you being upset. And I've found that really works well for me too. You know, I'm like, I'm here to hug it out till we get to the other side. Whatever we're gonna do. I think the key is just letting people know to be in authentic and intentional when you reach out. I think that eliminates that toxicity of just, you know, suck it up, get it going, right?

SPEAKER_01

Absolutely, absolutely. I think a lot of people, a lot of patients feel like they have to put on a front. That's right. That they are okay to either hold their family together, to hold, you know, the grandparents together, the parents, the kids.

SPEAKER_00

Yeah, and that's a lot on top of what you're already dealing with, right? It's a lot, yeah. I I will tell you that, you know, in 20 years now of supporting patients and being there, whether it's a caregiver of immediate family or just others, just you know, aligned with their journey. It's interesting to me too, and I'm saying this just because of podcasts in our audience, the males that I work with, they really take on this burden of being still the leader of their family and not breaking down and being emotional. And um, if Rex was on here, my husband talking about this, he would tell you that I'll receive calls late at night or real early in the morning, like four or five in the morning, from these patients, these gentlemen that want to just scream it out or to just tell their concerns because they don't want their families to see the vulnerability. So I would say for anybody, so I'm so glad you brought it up. When you you don't have to feel like you have to be all things to all your family, I do think that you've got to talk to them so they know you need to be able to be real of what you're facing. And the same for the men that are facing it, you've got to find a full tribe. Yeah, because of course, if you have younger children or whatever, there's different ways you navigate it. But I think you've got to have a tribe of people around you where you can voice those concerns and be authentic to what's going on. Absolutely. Well, um, tell me if there were specific questions that you wish you would have asked your doctors at the very beginning of the journey.

SPEAKER_01

Um, so for me, you know, we're talking about lung cancer, you know, I talk about this all the time. Um local consolidation therapy is a very big item for me. I'm very passionate about it because I went through it. Um and for those not listening, not listening? For those of you that are listening, hopefully, local consolidation therapy is essentially like you have been on treatment for X amount of time, you've had a great response, but there's still a few sites remaining in terms of activity. You can explore radiation or surgery as a potential option if you are the right candidate. It's very specific. Right. You definitely have to get an opinion on it. But I wish I had known about it earlier. I wish, you know, I knew surgery was potentially an option at stage four. It was still kind of talked about in 2024, but um I wish I had read more on what consolidation therapy meant so I could better talk to it about it with my care team. And so there are the different things like that where I felt like I wish I was more informed on that to see if I was a candidate. I wish I was more informed on certain new therapies that I wasn't aware of. So, and that's why I always say, like at the beginning of your diagnosis, finding those experts so that you don't find out about these things later on when maybe you should have done a course of treatment instead of the other one and all those things. So finding those experts that can really fill you in on all the important things that are going on today is imperative to ensure that your treatment course is as aggressive as possible and is the right course.

SPEAKER_00

Yeah, yeah, that's really good information. And I think that patients need to know and not be overwhelmed by like, oh my gosh, there's so much I have to learn, right? Yes. They've got to gauge that on their own. But that's where I said a tribe as far as your support team on the medical side, but support team like this, a network that you have out there, I think it's so important, you know, because it can be super overwhelming, you know.

SPEAKER_01

Oh, very overwhelming. And, you know, my we've kind of joke about this, but my mom has turned into like the non-doctor her to expert. And she's kind of like her her role in all of this is keeping track of trials, keeping track of the new things coming up. If I see an article, I send it her way. Because I don't want to read all this stuff. I'm already going through so much. And so she's kind of like my AI resource that she also uses AI, right? To like compile all of this stuff about her too. And what is relevant to me, what is not relevant to me, what should I bring up with my doctor, what should I not? Um, and she's been amazing. And I'm not saying that every single person has that, but if you if you do have a person that is willing to take that on, to take that off of you, it is everything.

SPEAKER_00

I I agree with that. That's huge, and that's what I was talking about of having that person in your corner because they could keep up with that information. They can look at it. I don't want us to miss the moment of what you said though, is you don't want to be reading and diving into all of that while you're dealing with it and living with it. And I think that's important. That is a lot, you're already dealing with a lot of mental stress, you know, and anxiety over everything, and you're trying to be, you know, engaging in life. And so I think that um that's so much, and you never know what you're gonna read, and whether you're understanding what it's saying, it's just chaotic, right? So I think that that's huge that you can do it. And there are plenty of organizations out there, you know, that I mean, even Rexana Foundation, we get questions all the time. And if we don't know the answers, we'll help them navigate that. But there's a lot of amazing organizations out there today that you can lean on to do that. Okay, let's um let's talk about mental health. We've brought this up several times, okay. We're just gonna talk a couple of minutes about this, but tell us you've already talked about your hiking and screaming at the top of the mountain, but is there something that does help you cope emotionally during treatment when you are dealing with an uncertainty or like a routine you put in place for yourself?

SPEAKER_01

Yeah, I um, you know, and I think this is one of your later questions, but around like scan ziety, getting anxious about scans. Um, in particular for me, specifically, I get anxious about certain blood work because it reveals things. I try and occupy myself as much as I can. And, you know, for me, that's hiking, going to the gym. I still work full-time, so working too, but I found that if I don't occupy my mind, my mind will wander, it will fester, and it will go to a really dark place. And I start worrying about things that I don't even have to worry about right now. You know, I'm a I'm a project manager as part of my background, and so I was always a planner. And now I've been told, like in my head, I keep telling myself, let's live week by week. Some people are day by day, some people are hour by hour. Yeah. But find things that can distract you. And you know, if you like gardening, if you like cooking, if you like hanging out with someone in particular, those distractions are everything. Um, and you know, if you do find yourself at home alone, not doing any activity, I found meditating has been wonderful for me too. Guided meditation that actually speaks to you. Non-speaking ones, my mind goes places again. Um, you know, it's it's different for everyone, but it's keeping occupied has been the number one for me. Like if I start to think I'm spiraling and I have nothing else to do, I'll start vacuuming. Okay. Yeah. Because because I just take, you know, I start focusing on vacuuming the floor instead of spiraling whatever I'm thinking about. And so um, you know, maybe that's putting the dishes away or um pulling out a colouring book and or painting, like any, you know, you could. Apply this to anything, but just just keeping your mind occupied is everything.

SPEAKER_00

You know, it's so funny. You just brought back a flashback of memory. And I always tell people that, you know, obviously we lost Rex Anna in 2006, but I have moments that are like flashbacks. Like sometimes they're flashbacks of joy, sometimes flashbacks of grief, you know. And when you were talking about keeping yourself occupied, I just had the greatest moment of like joy and remembering the anxiety because what she did, Rex Anna moved in with us for those last 60 days when she was being treated in Houston. And whenever she'd get anxious about an appointment or something like that, we always had traveled all over to all these restaurants. So we were like foodies, but here we were in the house because we were trying to keep her in because she was in a really state of, you know, contagious. We couldn't just be out. And anyway, she'd say, Let's bake. And we would be mixing something up and just that spoon and the bowl clinking it. And so you brought that vision to me. So literally, that's what she and I did. I would give her a bowl and something, and she'd just those poor bowls, it's amazing that stainless steel didn't have dents in it, you know, because she would just be going. But I do remember that was how we handled it, right? We'd make something new or we'd do a spread out, you know, but we were talking or we were interacting. Of course, obviously she had me there, but everybody, if you you can do it on your own, or you could call a friend over and say, let's do something, right?

SPEAKER_01

So absolutely. And I will say, and I know this isn't accessible necessarily to everyone, but acupuncture has been a game changer for me. Some people are not receptive to it and it doesn't work very well, but for other people, it is magical. I get acupuncture once a month, it's available at my cancer center at a much lower cost. So definitely people should look into what their cancer center offers if there's an thing like that. But acupuncture's been really good for my mental health. My acupuncturist puncturist has also become like my therapist. So that also helps as well.

SPEAKER_00

Although he didn't sign up for that. Yeah. But I think that you bring up a good point too, because that's another thing that's really evolved in just care in general. Now, I'm saying it's evolved. I think we have a lot of work to do to create a team of mental health experts, the physical help, the nutritionists. I think there's a lot of people we need to have on our team, okay, when we're battling this. But I will say, and I've had several patients right now that we've been supporting that are trying alternative treatments in collaboration with their medical treatment. You know, whether it is the cold, you know, the ice, there's just so many. And um, I think there's a lot to be said for some of that, whether it is for your mental well-being, if it's that space that you're doing something else just to make your body feel better. But I do think, and again, I think that's like everything else. I think people need to network with people that and organizations that have tried it and what there is, but I do think there are more alternatives that the alternative medicine is working with the oncologist. That we're working collaboration. And I think those are the type of questions you should add to your list, you know, absolutely, because I think that is good for your health, physical ability, and your mental. I think that's great. But I do want to move, I've already talked about, you know, Rex Anna's mission, you know, to support and love patients through their journey. And you know how important that is to me. That's where my heart and soul is is supporting them. So I want to just spend a couple of minutes talking about support systems and how you've been connected to different ones because I know they've played a role in your journey. So can you just start and talk about maybe the impact that patient advocacy organizations or networks that are out there have impacted your journey?

SPEAKER_01

Yeah, absolutely. Um, you know, I'm part of multiple um organized groups. Um, I'm part of the Young Lung Cancer Initiative, which is um people diagnosed with lung cancer under 50 years old. Um, they were actually one of the first groups that I found and joined. Um, and uh, you know, they had just established um maybe two months, three months before I was diagnosed. Um, but they gave me a massive list of questions I needed to ask my oncologists because I was a deer in the headlights. I had no idea what I was doing. Um so they very much guided me through my first couple of appointments, educated me on biomarkers, right? Um, and then when I got diagnosed with her too, um, HER2 is sometime, well, most of the time, related to Exxon 20. So I got introduced to the ESON group, and which has specific expertise around her too. Um and so then I got put in touch with XYZ people to talk about specifically about my mutation and what was available or what were in trials. And then I further connected with organizations like GoTo and Longevity, and they brought a lot of us together. Like I just came back from a longevity conference where I got to meet hundreds of people going through lung cancer. Um, and it was, well, it was a will and it was incredible because it's very isolating to have lung cancer. You know, there's a lot of stigma attached to it still. So I feel like it's one of the more isolating cancers compared to any other um one. So when you meet other people, it feels great. You can commiserate together, you can smile together, laugh, make dark humor jokes, you know, all the things. And so being connected to all these groups has really empowered me and educated me. It's empowered me to be a better advocate for myself, a better advocate for other people. Yeah, it really has been everything to me. And I, you know, a lot of people, you don't have to be as out there as I am. Like you can join these groups, never say a word in these groups if you don't want to, but you can learn from others. So it totally depends how many conversations you want to have. You don't have to have any. If you want to have some and be educated, you can, or you can learn from others. I tend to stay away from the less formalized groups that maybe were created by just a random patient. And the reason being is they're not as well moderated as some of these other groups, and there can be a lot of misinformation out there. So I think it's really important when you find these advocacy groups that they are more formalized and they do have the experts on hand that actually know what they're talking about so they can guide you through things.

SPEAKER_00

Yeah, I think that's key. I think that's really critical is to make sure, I would say make sure it's a formalized organization. I would check how long they've been around, you know, look at their references, look at their medical and scientific advisors, look at the doctors that are supporting them, look at their patient list, you know, that of the group members that are there. I think all of that's really important because you're exactly right, because there's a lot of misinformation that can happen, and you really don't have enough time to chase a rabbit trail that's not, you know, something that would be a value. Okay, tell me um if someone came up to you and said, Hey, let me know what you need or how can I help? I hear all the time that that is like it just lands there, you know, because you don't it's awkward to respond to that. Kind of maybe probably goes back to the conversation of when you're really checking in or you're just saying, How are you? Right? Exactly. So what would be your practical way to really have people support you or a loved one or a caregiver? What could they really ask? What could they say that would be beneficial to really get a response where you know it's really they want to do something?

SPEAKER_01

So I feel like if you know that person well enough, you'll know the different things they do or you know, their lifestyle, what they're struggling with, those kind of things to a high level, right? So use me as an example, you know, I have a dog. So when we're newly diagnosed, um, people would say, Hey, do you want me to walk your dog for you? Right. That would take the burden off me having to walk my dog when I had a lot to handle. You know, hey, uh, I don't know if you have a meal set up for tonight, but I'd love to send you a DoorDash or an Uber Eats. I'd love to set up a meal train for you. I'd love to come and clean your house, right? I had um a lobectomy. I asked my mother-in-law if she could come over and clean my house for me. So she did. Um I would say to people, also as the patient, don't feel awkward. You know, if you're comfortable with these people enough, whether your friends or your family, don't feel awkward being specific on your requests. And quite frankly, if they're weird back, then they probably didn't really want to help in the first place, right? They were just kind of extending the thought of like, what can I do for you? And not really having the intent. But if you are specific and those people truly do want to do some kind of action, they will be responsive and they will, they will do something that you're asking for. I also found that I think when I was newly diagnosed, I created like a list and an Excel spreadsheet of like all the things that I needed help with, and people would like go in and be like, oh, I can help with that, or I can help with this one. And so that was also another way of rather than me being like very direct to people, like I need you to walk my dog. It was like, here are the different options of where I might need help. Where can you provide that assistance if you really are willing to do it?

SPEAKER_00

I love that. I think that's such a great recommendation because I also hear from patients too that they're like, you know, I struggle with asking for help. Well, just initially, if you just have a list or you have some suggestions of what they can do and give them the option and let them run with it, then it's not stress on you as the patient and it's not stress on them. They can pick and choose what works for them in their life, right? Absolutely.

SPEAKER_01

So if you have like a caring bridge or anything or anything where you're providing updates, right? Whether that be Facebook or wherever you're doing those updates, if you are, um, you know, just post that link and be like, hey, these are my things that we need assistance with, might be driving me to my next appointment, right? Um, it might be sitting with me with the doctor, but how can you provide some help that will actually like really truly help me out? And and I'll tell you from the patient perspective, it means the world to get like direct assistance on the things that you need help with.

SPEAKER_00

Yeah. One of the things I tell people, because I'll do like calls or zooms and stuff with people that are supporting patients or caregivers or extended family, and they'll ask what to do. I'm like, you just have to take action. And what I tell them, and I loved how you put it, is you know the person. So what do they normally do that they normally need, then fill that gap, take action. You don't even have to worry about if they're asking, you already know. Just like you mentioned, walk the dog. Well, maybe they need the dog groomed, right? Or they need you to pick up dog food, those bags are heavy, right? Something like that. But I think it's just taking action on something that you know is part of their normal routine. Absolutely. That's big. Okay, what would you say to someone who feels alone in their diagnosis? Because sometimes it can be super isolated.

SPEAKER_01

I would say if you're feeling alone and that you're the yeah, if you're feeling alone to check out those advocacy groups, do some research. Um might also be that your local hospital also has groups, right? So if you're more of an in-person person, then look and explore those groups, or you can do the virtual path where you connect with advocacy organizations. A lot of the advocacy organizations can actually pair you with other people, right? Similar ages, similar experiences, kind of things like that. Or you just naturally meet people within these advocacy groups that you might get a bond with. I call her my cancer bestie, but she was diagnosed exactly the same day as me, both military families, both with the rare her 2 mutation. Like we have so many wild similarities that we just connected, right? And we talk nearly every day. And so once you find those connections, they will be invaluable to you. And while you might feel like people that you know locally, spouse, friends, etc., don't, while they're there for you, they don't get it, right? They're never gonna truly get it. So you really have to find, even if it's just one person, to be able to bounce stuff off of, talk to, text a little bit, and that makes you feel so less alone. I mean, I agree.

SPEAKER_00

So dramatic. I agree. I agree so much. At first, people are like, I don't know, or hesitant to meet somebody they think's a complete stranger, but I'm like, it's gonna be invaluable to you when you're thinking about how isolated you are.

SPEAKER_01

Absolutely. And I will say, and I will say with the with the local in-person things, while they are good, I think sometimes people struggle if they can't, if they don't find someone that has the same cancer as them. It can sometimes be frustrating or hard to relate or hard to understand their perspective. So that's the only downfall of those more local groups. And finding someone that has your lung cancer specifically does make a very big difference. And for all you know, through these advocacy groups, you could find people locally, right? Like obviously your doctor can't tell you who's around locally, but you can find them. I mean, now in my area, we have like five or six of us that get together regularly, we go hiking, we cry together, we vent together, you know. Um awesome. And it's invaluable. Uh and again, no doctors can do that because of HIPAA regulations. Right. But um, yeah.

SPEAKER_00

That's awesome. Well, I think too, you know, just that's where sometimes people don't understand. If you are her two or out positive, they're like two totally different cancers. Yes. Non-small cell, small cell, you know, they're all lung, but they're completely different. And so that's also why if you do know your biomarker and you can be connected with folks like that, that's huge. Yeah. Okay. Well, Samantha, I know I've already way taken so much of your time, and I'm beyond grateful. So I mentioned at the very beginning, we always have kind of a pattern, a three, two, one. And so we're gonna do this, and I'm gonna be, it's gonna be the kind of like the rapid fire. Okay. And so the first one is three learnings. So just tell us three learner learnings that you want others to know about your journey so far.

SPEAKER_01

Biomakas, second opinions, and community.

SPEAKER_00

Perfect. Yes, all of those. Two, give me two things that have been unexpected blessings that have come from the diagnosis.

SPEAKER_01

Meeting some absolutely incredible people that I would have never met otherwise, um, including yourself, Lisa. Um and then uh the second is um meeting some incredible doctors that truly treat you as an individual, personalized medicine to you specifically, that was not something I knew was a thing until I got into all of this, and it's incredible to see.

SPEAKER_00

Yeah, awesome. Okay, what's one thing, one message, one piece of wisdom that you want to leave to the folks that are listening to this podcast?

SPEAKER_01

You know, there's hope, right? I mean, as cliche as it sounds, there really is. For those listening, I I was given nine months to live from my original uh doctor and not realizing that I had a mutation, right? I'm here over two years later and doing extremely well thanks to drugs that target my specific mutation. And I would say this applies for anyone, regardless of what mutation you have, whether you don't, if you don't have a mutation or not, there are things being researched all the time. They are on the cusp of some incredible things. You just need to, in your sad, dark times, remember that there are researchers out there working their asses off to try and get the next thing through for us and to give us more life. And that is everything.

SPEAKER_00

Yeah. Oh man, that is awesome. Well, I told everybody this was gonna be absolutely amazing, and it was. Thank you so much, Samantha. You're absolutely an inspiration. I can't even begin to put into words. And for everybody listening, uh, if you go to rexanafoundation.org, we have a place, contact us if you want to leave some messages, leave some notes, ask questions. We'd love to hear from you. Any feedback you can put on YouTube as well. But you guys, the goal for this podcast has always been that we want to create a community and everybody that's moving and dealing and supporting with somebody battling cancer, somebody that is battling cancer, they get the clarity they need, the support, the information to be able to make those courageous decisions that they have to. And you know what, a community that fills their soul with hope, that would be my goal. So until next time, everybody just lean in, make sure you capture those moments. You know what, Samantha? I saw on one of your Instagram posts, it's my new favorite thing. Um, I want everybody to capture those micro joys moments. I loved how you learned that. So together we can collectively make sure we move hope forward. So thanks so much, everybody. Take care.