At 37 years old, after exhausting multiple standard treatments for stage four lung cancer, Natalie was faced with a life-altering decision. This episode shares her incredible true story of undergoing a double lung transplant for lung cancer—a rare and radical procedure that offered a glimmer of hope. But what happens when the fight isn't over? Natalie joins us to discuss her entire journey, from a persistent cough that led to a shocking diagnosis to the unbelievable challenges and surprising turns she faced after her transplant.
In this powerful and honest conversation, Natalie details the full spectrum of stage four lung cancer treatment options she endured. Her journey began with a persistent cough and fatigue, initially dismissed as asthma, before a biopsy revealed adenocarcinoma. With no targetable mutations found during biomarker testing, she started on a grueling regimen of chemotherapy and immunotherapy. When those treatments eventually stopped working and several clinical trials failed, her medical team presented a final, high-stakes option: a double lung transplant for lung cancer. Natalie bravely relocated to Chicago for the procedure, navigating the immense physical, emotional, and financial challenges of the surgery and recovery process. In a devastating turn of events, she later experienced a cancer recurrence after transplant, with the disease appearing in her new lungs and spine.
Despite these immense setbacks, Natalie's spirit remains unbreakable. She has transformed her experience into a powerful mission of lung cancer patient advocacy, determined to educate the public that anyone with lungs can get lung cancer. She speaks candidly about the importance of a support system, the pain of "cancer ghosting," and offers practical advice on how to support someone with cancer in meaningful ways—from sending a gift card to simply being present. This episode is a raw look at the realities of living with advanced cancer, the difficult decisions patients face, and the resilience required to find hope and purpose in the face of uncertainty.
About Our Guest:
Natalie is a courageous lung cancer warrior and passionate advocate. After being diagnosed with stage four lung cancer at 33, she underwent a life-changing double lung transplant. Now, she uses her powerful story to educate others about the risks of lung cancer, advocate for patient care, and share the realities of cancer recurrence and survivorship.
Episode Resources:
Introduction
Eunice: Hi, I'm Eunice. Welcome to Before Our Visit Ends, a space where we take a moment to get to know the whole person beyond their cancer diagnosis. Along the way, we'll gain meaningful insights on living a life that is not defined by cancer. These stories are sometimes heavy, sometimes unexpectedly light, but always honest. During this podcast, my guests and I will be sharing personal experiences and discussing medical information. That said, the information we share is based on our own lived experiences, perspectives, and personal understanding. This podcast is not intended to replace medical advice. Please consult your own healthcare provider or licensed practitioner with any questions or concerns about your diagnosis or care. Before our visit ends, it's not responsible for any outcomes related to information shared in this podcast. Each episode is shared with the hope that someone listening might feel seen, better understood, or more informed. And with that, let's begin today's episode. Today, we have Natalie. Hi, Natalie. Thank you so much for joining us.
Natalie: Hello. How are you?
Eunice: Great. So before we start, Natalie, I'm really excited to have you on today. Can you tell us a little bit about yourself, your background, things that you like to do for fun, what your life looks like right now? And then we'll jump into your medical background and your cancer diagnosis. But before that, love to get to know you.
Natalie: Currently, I reside in Chicago, Illinois, but I'm actually from Atlanta, Georgia. And the reason that I am in Chicago is because I got a double lung transplant. But since I have been up here, I have actually grown to love the city of Chicago. And I've created this bucket list since I've been in Chicago of everything that I'm actually trying to do while I'm here. So you can imagine my list is pretty long. If you've ever been to Chicago, you probably know how that is. But aside from living in Chicago, I have a love for travel. Haven't been able to, unfortunately, travel as much just because of the things that have transpired in the last year. But I plan to get back to it as soon as I get back home.
I have a love for animals. I do have a puppy or a dog rather named Hershey. And I actually miss Hershey very much. I didn't bring him with me to Chicago. So I'm hoping that the poor dog even recognizes me when I come back. So we'll see how that goes. But Hershey actually has inspired me to want to volunteer at the animal shelter. So when I get back, I think, hold me to it. But I think that that's something that I am going to check out just to give my time to the animals. And plus, my husband wants a second dog. So maybe if I'm going to volunteer, this will kind of fulfill that need so we won't actually get a dog. But aside from that, I love to educate and advocate for lung cancer. I've been an advocate for about five years, but maybe I would say in the last year, I've pretty much gone a little harder than I typically do. Reason being is because I did have a double lung transplant, as I stated, and I want the world or I want people to know that a double lung transplant is possibly a life-saving option or a life-extending option for some people. So in my spare time, I'm going to just work on increasing, advocating, and educating.
Eunice: I am going to ask you more about double lung transplant because I think our listeners are going to be interested in what that means, who can get a double lung transplant, what are the reasons why someone might need a double lung transplant. But I'm excited to hear about Hershey. I believe you're going to get another dog. I'm going to hear about another dog. Really cute name. What are some fun things that you've done in Chicago since you've gotten here?
Natalie: Well, my definition of fun might be a little different than yours, but I've been to the Museum of Ice Cream. I think it's so fun. It was actually more adults there than kids. Kind of odd, but that was very fun. I've done a few architectural cruises, basically going up and down the river to try to teach you the history of Chicago. Of course, I've been to the infamous Bean several times. Every time someone comes to visit, we kind of have to go visit the Bean. It's just a thing to do. And then I have a list of restaurants that I had been to and that I still want to go to. I'm actually leaving in about six weeks. So I got to try to knock out the rest of these restaurants on this list. I don't know how I'm going to have the time to do it. I definitely want to do it.
And then another thing that I would love to do, they have this nice dinner cruise called the Odyssey Chicago River. I think you can do brunch and lunch, but I want to do dinner. It's this glass boat. And it's just very nice. And then Chicago also has a lot of museums. One of my favorite ones was the Field Museum because it had this dinosaur exhibit. And I'm a huge fan of dinosaurs. So that was really fun for me.
Eunice: Those all sound amazing. But we can dive into your medical background. So can you tell us a little bit about your diagnosis, taking us back to when you were first diagnosed, what prompted you to get the diagnosis? What were the tests that were done? What were your symptoms?
The Path to a Stage Four Lung Cancer Diagnosis
Natalie: So I was first diagnosed in June and July of 2020, pretty much when the height of COVID was crazy. And it was very interesting because I had to go to a lot of appointments alone. A lot of anything, emergency room, you name it, just because everything was going on. So that was scary for me from a mental aspect because I couldn't have a lot of people with me. But what originally prompted me to get checked out is I had a cough that would not go away and it was really, really bad. And then I was also experiencing fatigue. And I thought, hey, I have a cough. I have fatigue. I was starting to work out twice a day. So I'm thinking that this had something to do with working out.
But starting in December 2019, urgent care told me I was having, I don't know if I'm pronouncing this right, bronchospasm or something like that. So I went with it for a while. Things eventually just started getting worse. So I went to my primary care doctor and she said, oh, it's just your asthma because I did have asthma at the time.
Eunice: No x-rays, no CT scans.
Natalie: No, not yet. So she said I had asthma and then they said I had allergies. And then I said, OK, wait a minute. We keep going through all this and apparently none of this is working. So what do you recommend next? So she recommended to go to a pulmonologist. So once I got to the pulmonologist, that's when the pulmonologist actually did an x-ray. They did an x-ray and those breathing tests. You know how you go sit inside the machine and all that type of stuff. So anyway, as soon as she did the x-ray, she walked back in and said, whoa. And then we'll forget this. And I'm like, what does woe mean? And she said, you have a lot of something going on in your chest, but I can't tell what it is. So then she asked me, had I traveled to a foreign country lately? She asked me about tuberculosis, malaria, all kind of whatever diseases. And I'm like, no, that's I don't have any of that either. So finally, she said, I think that we should do, we need to do a biopsy. So I said, okay, of course, that was the next thing. So we did this biopsy.
And then they called me and they're like, hey, the good news is it's not cancer. The bad news is we don't know what it is. So I said, okay. So I was all happy and excited. I'm like, yes, at least I don't have cancer because I figure anything else I can deal with. Well, that wasn't quite the case. So I got another call back saying we actually did not get enough tissue samples. So we need to do another biopsy. So I said, okay, so we had set up the biopsy already, but it just so happens that I had pneumothorax from the first biopsy. So I ended up going to the emergency room anyway. And it's been admitted, but they ended up doing the biopsy while I was actually in there, so we could try to get this fixed. Next thing you know, I wake up from the biopsy. My husband is looking at me like his eye of the watery and the doctor is in there. And I'm looking like, why? What's wrong with you? As you know, I'm just waking up.
And so the doctor said, we need to talk to you. We see, I can't remember his exact wording. I think he said we see adenocarcinoma. I think that's how he worded it. And I'm like, well, what is that? I said, I think I saw that online, but what is it? Because keep in mind, I had already been on Google way before this second biopsy, just like everybody else had. And I had seen these words and I kind of thought to myself, if I do have cancer, I'm thinking it's I'm staging my own self now. I'm thinking it's stage two or at the most three. But it shouldn't have been on Google in the first place. So the doctor says that and my husband at this point, his eyes are just watery. So I know that this is just not good, whatever it is. So the doctor says, I'm going to recommend you to an oncologist. We're going to get you set up and so forth. So I'm looking at my husband, I'm saying, OK, if he is recommending me to the oncologist, I think that means I have cancer. But it still just didn't click all the way. So here we are going into the oncologist's office. A couple of weeks later, we walk in and she's looking at everybody, just looking at everybody real strange. And she says, you have stage four lung cancer.
So at that point, I don't know if I passed out. Something happened to me. All I know is I was sitting in the chair and I just started kind of leaning over to the left. My body, air had went out of my body. I just don't know what happened to me. But all I can remember them saying was, catch her, she's falling over.
So immediately the doctor says, you didn't know it was stage four. Did they not tell you any of this in the hospital? I said, no, they never actually gave me a stage or anything. So here I am sitting here with stage four cancer. And I'm, what was I, 36? I was 36. 33 years old and have no idea how I got it, why I got it, thinking the typical things that everybody else thinks. Well, I work out, I eat pretty good, all of the things. But of course, none of that stuff really matters when it gets down to it.
Navigating Early Treatments: Chemotherapy, Immunotherapy, and Clinical Trials
So I asked the oncologist, I said, well, hey, can we start chemo today? She said, it doesn't work like that. You can't start chemo today. I said, well, what do we need to do to move forward? I need to figure this out. She said, well, first of all, we need to make sure that it hasn't spread to any other parts of your body because the only thing that they knew is it was in lungs and lymph nodes they didn't know brain they didn't know anything else so naturally that was another few weeks of testing that I had to wait. But my husband did tell me that she said my doctor said that the goal was to keep her comfortable. I never remember her saying that. That's what he told me years later. So I'd get all this testing done, finally she tells me, the good news is, I mean situation still sucks. But the good news is, it had not spread outside of the lungs or anything like that. So we're going to do what we call biomarker testing. And she explained it. Well, she explained it as a blood biopsy, but in biomarker testing. And she explained it in terms that I could understand. She said, this will help us with your treatment. So we still got to wait just a little bit. It was just a waiting game and everything was just so slow at this point.
But finally, we did all these tests. Biomarker comes back. I'd have no mutation, whatsoever. And she is completely shocked because.
Eunice: You're so young.
Natalie: Right. That's exactly what she said. She said someone of your age and everything, there's just no way that you don't. So I think they did it again. And then it came back the same way. So unfortunately, not unfortunately, but I started off instead of a targeted drug, like probably most people do. I started off with two chemotherapies and I started off with immunotherapy. And I was under the impression, I didn't realize that, hey girl, they're not going to be cured, you're just going to be treated. But I didn't realize that at the time. So I'm thinking, yeah, I'll be on this treatment for about 12 weeks and then the cancer is going to be gone. And my husband's like, no, Natalie, that's not how it works. And I'm like, yes, it is. So I'm in denial.
Eunice: When did you realize that this is not curative? When did you realize this? This is a good question for people to ask. When I'm getting this treatment, what is the goal?
Natalie: What is the intent? Yeah. Well, my husband said that the doctor laid out everything on the line and said everything up front. I don't recall any of this, I guess, because I was so whatever in my brain. So I probably did not realize this until my third treatment that we were, this medicine was not to cure. It was just to treat. And so then I felt some type of way. I started like, oh my gosh, I'm definitely going to die. I'm definitely, my whole attitude changed again. Attitude changes probably once a week dealing with this. And at that point, my mental health was just not good at all. Not good at all. And then of course, I didn't know a lot about lung cancer. Didn't know anybody who had ever had it. Didn't know anything. Cause I'm thinking in order to get lung cancer, you have to be 80 and smoke a bunch of cigarettes, but clearly that's not the case.
Eunice: For your situation, which I know we just talked about, it's like you're young and you don't have any biomarkers, any mutations that can be targeted for a targeted treatment. And so you do the chemo, you do the immunotherapy, and then what happens after you're done with that treatment?
Natalie: So after I do that treatment, I did have a few. I had a little shrinkage. I had a mix bag, mix can. Like some got smaller, and then some just, some got smaller, and then some stayed the same size at that point. So I was, I don't want to use the word, okay with it. I was okay with the ones that got smaller, but the other ones, I'm like, why isn't everything getting smaller? Because I'm thinking, once again, I'm on this medicine that is going to shrink everything. I had no idea what the word stable technically meant. So common in the cancer community. I didn't know anything about that. So I was I think I was, I wasn't content, but I was trying to understand what happened. So I was on this treatment for 12 weeks.
And then supposedly, I guess the regimen that I was on or the cocktail I was on, you only stay on it for X amount of time. So then we switched, not because I had progression, but we just switched to something else. And I was on that for quite a while, ran into, I'm not going to say a lot of complications, but I would say the biggest side effect for me throughout all of this was the fatigue. The fatigue was so bad. I had never experienced or felt anything like that in my life, but I was still working. Keep in mind, well, no, this particular job, they knew about it, but the job after that didn't. But anyway, I'll get to that later. So basically what I was doing, I was so fatigued, could barely walk, talk or anything. I would literally go put on some makeup, go jump on a meeting. This was, keep in mind, this was 2020, so nobody was in the office. And I would take a meeting. And as soon as I got through the meeting, I would fall straight to the floor and just take a nap, wherever I was. And then I would wake up, had another meeting in two hours, would do it again. So I'm just at this point running off of, I don't even know at this point. So I was on the second regimen for a little while. And then I asked my doctor, I said, hey, let's make a deal. I said, if my next set of scans proves to be stable or better, can I drop chemo for a while and just do immunotherapy? Because the chemo was just wearing me.
So that happened. I dropped chemo for about 10 months, maybe. And 10 months, I was living my life just being on immunotherapy. I think I was on somebody's plane almost every month. And most of it was not for work. Just doing crazy stuff because I felt so good. Well, some things come to an end. Good things come to an end. And my immunotherapy ride came to an end because I started experiencing progression, unfortunately. So I had to get back on another type of chemo. And it was stable for a while, which, like I said, stable is still okay. So I did that for a while. And then after that, I started to actually progress to the point where I was getting concerned like, hey, what are we going to do because I'm progressing? And then that's when they introduced me to clinical trials.
Eunice: What were the symptoms that you were having while you were progressing?
Natalie: So let me put you in the mind for how bad my cough was. So I had a cough tracker on my phone. Didn't even know that was a thing until my doctor told me about it. So I monitor how often I coughed. I coughed two to three hundred times an hour to the point where I was cracking and breaking ribs. So I was in a lot of pain just because you can imagine I'm just fracturing stuff everywhere. But to answer your question, my cough started to get worse and I started to get tired, more tired than I already was. So I could tell that something was happening.
Eunice: I think it's tough to know that these things are happening in your body and then knowing that you've gone through several rounds of treatment and you're progressing through each round of treatment. And so this is where the discussion about getting on a clinical trial came up after a couple of rounds of different treatments. And how was clinical trials for you?
Natalie: Overall, clinical trials were a fail. None of them worked. So I've been on three, three including the double lung transplant. That's considered a clinical trial. But all three of my clinical trials failed. One was local and it was a phase one. And it was terrible. It made me extremely sick. I had to get admitted in the hospital. It was just awful. So in my mind, I'm thinking, well, hey, since I'm getting this sick, maybe it's actually working. Oh, no, it was the complete opposite. It was not working. So I dropped that trial and then I had to go out of state for a trial, which was it wasn't super far, but it was far enough because I couldn't have any my dad drove me sometimes, but that was a lot. So sometimes I was actually flying back and forth to go get this treatment. I was on that for a few months and then unfortunately that did not work either. So at that point, I'm like, OK, what do we do? Because I feel like we have exhausted X amount of chemos. I don't have any type of mutation where I can take any targeted medication.
The Life-Changing Decision: Pursuing a Double Lung Transplant
Apparently, immunotherapy alone is not working. What do we do? So my pulmonologist, I actually had a follow-up with my pulmonologist just because my cough was out of control. And she said, hey, have you ever heard of a double lung transplant? And I'm like, no. And she said, I think that you might be a good candidate for this. I'm gonna give you some information on it. Go home and read it. Give me some feedback. And if you think it's a conversation that you would be willing to entertain, I can refer you. So, of course, I went home.
Talked to my husband about it. The biggest thing with a double lung transplant is that you have to relocate for one whole year. You cannot. Well, you can come back home with special permission. But the whole gist of it is for you to stay up there for one year because they want to monitor you. They do not provide any type of housing. So you have to pay for everything out of your pocket. So that was a whole nother. That was the whole situation. If we do this, how are we going to do this? How are we going to do that? So eventually we said, well, we're just going to have to figure it out. So let's do this. Let's have a consult with the hospital. Let's see what they say. And then move from there. So great. So I, we had a consult with the surgeon after he got all my information. And the surgeon basically said, your lungs are trash. They are completely filled with cancer.
And if you do not get the double lung transplant, basically you can try to find another trial or we might can try to put you back on a chemo that you've already been on, but it's only just buying you time just because you have so much cancer in your lungs. It's just really bad. So once we heard him say that, we said, okay, tell us what we have to do. We want to try this process. It's basically at this point, just whatever it takes. And whatever it takes was for me to do a two to three week testing screening process. And the testing was crazy. I have never had this much testing in my life. I had never done or heard of a swallow test. It was so much that I had to do. And keep in mind, my cough is starting to get worse, which means I'm starting to get weaker. I'm starting to get tired. So me having to fly there, at this point, I can't even walk in the airport. I never needed oxygen, but I needed a wheelchair. So my health had started to decline. I'm not going to say rapidly, but it started to decline to the point where I needed a wheelchair in the airport. So I completed all these tests and.
I honestly did not think I was going to pass because I felt like they were going to find something that disqualified me. Because if they find the requirements for a double lung transplant is that everything has to be confined to the lungs in the lung area. Anything literally outside of it, you do not qualify. So I thought that they were going to find something. The whole time in my head, I'm thinking something negative. But after about three weeks of wild testing, I got a call and said that I actually qualify for this double lung transplant. And as soon as I get to Chicago, they can put me on the list for lungs. So I basically packed all my stuff really quick and went to Chicago and I'm still here.
Building a Village: The Power of Support and the Pain of "Cancer Ghosting"
Eunice: What an amazing story. You talked about your dad when you were on the previous clinical trial. You talked about your husband. How has the support been for you? Because there's a lot of changes that have happened moving to Chicago. What's the community been like for you? Have you all also found support to help you with some of the funds? Who has been there for you? And what is the people that have been there for you? What does that look like?
Natalie: So the community has been amazing, I would say. My village, you need a village to get to pretty much anything in light these days, in my opinion, especially with this particular situation. So my husband has been my rock since day one. He's just done everything. I can't even say enough about him. But aside from him, my family has pretty much been supportive. My friends have been pretty much supportive. The way that I'm trying to explain it is that I've had so many different phases of this throughout the last five years. So people have been present or more present throughout the course of the time. So say, for instance, I'm in Chicago and I might have people who aren't necessarily able to show up for me in the way they want to because I'm in Chicago, but they showed up doing a clinical trial or they showed up when I was at home. People have showed up in strong areas.
But I will say throughout the whole process, the Chicago situation has by far topped where I needed the most support. Because, I'm here by myself now. My husband, he can't come up here. He visits me, but he still has to work. So obviously he can't move up here. I've had friends that come up here and visit me. Thank goodness. But I do have two friends in particular that either fly up here every other month or every other month. And that's a lot for them as well, because they have lives, they have things that they have to do. So for them to take time out of their life to come fly and see me, you still got to buy a plane ticket. So that's a lot. So yeah, my community has been awesome.
And a lot of people, like I said, have been to visit me, which is good because going through this, it helps me when I have visitors. I like visitors because when people come up here, it makes me happy and then they like to do things. So that makes me active. So when people come to visit me, we're normally walking maybe between eight and 12,000 steps a day, which is good for me because I need to be active. So when you hear me say somebody's coming up here, you know that means I'm about to be walking. So I need to basically get ready. But yeah, to answer your original question, I think community has been amazing. I will say there are some relationships that have fallen off that I am surprised of. I'm sure you've heard of cancer ghosting, which is a real thing. So I've lost a lot of friendships that I never will understand why I lost them or how I lost them. Or if I haven't lost them, people have changed drastically throughout this cancer process. So I'm still learning, even though I've been doing this for five years. I'm glad to still be here. I've just learned so much in five years about just people and relationships. It's just really interesting.
Eunice: I've never heard the word cancer ghosting. I wonder if...
Natalie: Oh, you haven't.
Eunice: No, I haven't. So this is actually a new term I've heard. I wonder if some of it and not really even trying to excuse it is people don't know how to be there. That's the other thing for the podcast that I'm trying to help folks who people who have someone else that's diagnosed with cancer. And what are the ways to stay in touch, even if you're not in the same location, sometimes just asking, how are you doing today? How are you doing this month? To me, I think that goes a long way. And I don't know if you would agree as well, because sometimes people don't know how to be there. And so I'm hoping that we can try to, you know, share some of the ways that people have been there for you. Maybe not everyone can fly in, but what are some other little ways that they can stay close to you? Because it is really hard for people that were your friends, you're going through this really tough diagnosis and you're fighting for your life essentially. And these people are not in your life anymore.
Natalie: It is very difficult. And I do agree with what you're saying. Kudos to the ones that are able to fly in. But if you're not able to, I have a lot of friends, family, cousins, whatever, co-workers, ex-co-workers. If you know things that I like, do that for me. So say, for instance, I like Starbucks, if anybody's listening. I like Starbucks. So I might have a friend who might send me a $25 Starbucks gift card to say, enjoy coffee on me for the day or for the week. Or I might have somebody regularly, randomly Uber eats me cupcake because they know I like cupcakes. So it doesn't have to be anything that's big. Or when it comes to communication on the phone, somebody just sending me a text message just saying.
Hey, just thinking about you, hope all is well. We don't even have to get into a conversation, but just by saying that, it at least lets me know that you're thinking about me. Or it doesn't have to be a text. If you wanna send me a message on social media, it doesn't matter where the message comes from. It's the message that actually counts.
But I've heard a lot of people say, well, I don't know what to say to you, so I don't say anything, which I can now understand where they're coming from, but it hurts me that you just don't say anything because you don't know what to say. But I'm a very transparent person. So if I have a situation like this, I'm literally going to text you, hey, I don't know what to say to you right now. Literally, that's what I'm going to text out, but just know that I'm here for you and so forth.
Also, another thing that people can do, instead of saying, what can I do for you? I hate when people say that. I know they mean well, but I'm the type of person that doesn't like to ask for help. So if you send me a message and say, hey, what can I do for you? I'm going to say, oh, nothing. Let's change the verbiage. Let's say, hey, I'm going to send you some groceries. Are you going to be home tomorrow? Let me send you a gas card. Tell me what you're going to do instead of asking me, what can you do? Because I'm going to automatically reject you. And that's just kind of common with a lot of people. I actually had a friend, I texted it out on a friend who had someone in her family to pass. And I said, hey, let me know. I said, what can I do for you? And she's like, oh, nothing. I'm good. And I know she's not good. So I said, you know what? I remember her saying, somebody in her family had transportation issues. So let me send her a Lyft or Uber gift card. I feel like active listening is also important when you're in time like this. So if you don't know exactly what somebody likes, just kind of do something like, or you can do a chemo kit. I've had people go on Amazon, buy me little kits. Those are so helpful. They come with socks, lip gloss, all that type of stuff. So there's so many things that you can do. So really, there should be no excuse for somebody to just disappear on you because there's too many different avenues of things that you can actually do.
Eunice: Yeah, I completely agree with you. And I think a lot of times people ask, what can I do? It's hard for a person to then have to think about, well, now let me actively tell you what I need, even though there are things that they need. So I agree with you, active listening and just thinking about what would you need, right? A gift card for getting food that goes a long way you're in Chicago by yourself who never wants to eat food. So I think that's a good point and also as the giver I think people do generally want to give and I think as a receiver it's always also okay to say actually I need this or I need because it makes the person feel great to know that they're able to contribute and they're giving you something that you may need. It's conversations that we will always continue to have. And I think it's helpful for everyone to hear from the person that's going through the diagnosis and the treatment and the people who want to be there and what are the best ways to do that. I wanted to go back to your double lung transplant. We talked about getting onto the trial, the process. What was it like to have the transplant and what was the recovery like?
Inside the Operating Room: The Reality of Double Lung Transplant Surgery and Recovery
Natalie: The transplant, and I'm only just speaking for myself because I know a few of us have had these, it was rough. It was probably the most intense surgery and or procedure that I've had in my life. I was in the hospital for two weeks, which doesn't seem like a long time, but the people that I've met, they only stayed in the hospital an actual week. So I was in the hospital for two weeks. One week I was in ICU and then the other week I was on a regular floor. And I'm really speechless just because the procedure was just that difficult. And my lungs were so, I guess, filled with disease or whatever medical jargon you want to use that another surgeon had to come in and pull or yank my lungs out. So they said that I was going to experience a little bit more pain than normal because they couldn't get the lungs out. So my pain level was just like I haven't and I tolerate pain pretty well. I metabolize like fast. And I was told that the reason that I didn't get released from the hospital sooner is because they couldn't, they literally could not get my pain under control. So I had a fentanyl epidural and I was able to push it out every 15 minutes and I needed it every 15 minutes, literally. It was just that terrible.
I actually did well in the hospital, so they say, but I don't think I did well. I lost so much weight because I was, of course, on a feeding tube for a whole week, so I couldn't eat anything.
And it was just ridiculous. I'm not going to say ridiculous, but I just really don't know what to say. That's just how crazy it was. And so I did have to go to therapy once I was out of the hospital. I think I went to therapy maybe two weeks after the hospital.
And therapy was pretty rough because I couldn't really do a whole lot. But I did, I did OT, PT, and then we did speech and cognitive because I'm sure you've heard of chemo brain or chemo fog, which is a real thing. So they were working with me to try to help with that, which I think it helped a lot. But going to therapy was a lot. And so I started having issues.
A Shocking Setback: Facing Cancer Recurrence After Transplant
So just spoiler alert. So my cancer ended up coming back. And I'm just going to put that out there. This is why I'm telling you this. So I started having back issues.
And they told me, oh, well, the reason that your back hurts is because you just had surgery and you haven't really been moving around. Then they told me my back was hurting because of therapy. So I went with the story for about two weeks. After that, I'm like, something's not right. My back is hurting way too bad. None of the medication that they were giving. I was taking pain medication still from surgery. But then at one point, the pain got so bad, I ended up taking the pain medication for surgery for my back. So it just so happened that because, of course, I still was going to have to get scans just to make sure I was good to go. But just to backtrack, I had just had a visit with the doctor like a month and a half ago. He said that all signs of cancer were clear and gone, and he did not suspect any cancer to return. If it did, no time soon. So I'm living this happy-go-lucky life. It's like, I can't believe I don't have cancer anymore. And that changed quickly. So once we actually did these scans, the doctor called me. I never will forget it was on a Friday and I knew something was wrong.
And just I just had this, this feeling. So they called me and said, can you come in in an hour? I said, my cancer's back, isn't it? And they were like, well, we can, I just want to wait until you get here. And so I said, okay. So I called my husband and I'm crying. I'm like, the cancer is back. I know it. And he's like, don't say that. So I hopped on my chart and I saw a few words and I was like, it's back. I actually have a friend who lives in this same building as me. Thank goodness. I'm not even sure how that happened, but it happened. She lives in the same building with me and she was able to go with me because I needed some mental support. I was about to lose my mind. So I get there and basically the doctor is like, yeah, it looks like you got cancer in your spine. It looks like your liver, your disc, your dad. And I'm just like, wait a minute. What is what are you saying? I'm like, how is this even a thing? And he says, we don't know. We're just as surprised as you are. So to give you the final result, so the cancer is currently in my new lungs on both sides. It's not filled, but it's there. And then I have cancer in my spine. I have four lesions in the lumbar area. So that's what the final result of it was.
And they think that the cancer in my spine was already there, but because of how the cells, the cancer cells shed, it didn't show up on a scan. I had been having lumbar, lower back pains, whatever, all in that area for the past two and a half years, but nothing ever showed up on a scan.
Eunice: Nothing on a PET scan or CT scan?
Natalie: Nothing. Literally, my back used to hurt. It was to the point where, if I didn't fly at least comfort plus on a plane, I couldn't get on one. It just would bother me. Or if I was in a car for over two hours, burning, just out of control. So we think that it possibly was already there. It was just kind of fighting. That's the only thing that we can kind of think of, which is a good and bad thing. Because if it would have appeared prior to, I wouldn't have been able to get the surgery. Believe it or not, the surgery actually has helped me because I don't have a cough. I do have energy now. So I can tell a big difference. Even though there's a cancer there, there's still a huge difference between the surgery, me getting the surgery and not getting the surgery. So, it sucks, but it still helps. My lungs don't have nowhere near as much cancer in them as they did before. They were like completely filled with cancer. So it is still a difference.
Eunice: Because your conversation is, I'm sure, like you were saying, how often you were coughing compared to now. We've had this whole podcast, you're not coughing. You haven't had a cough.
Natalie: Oh, yeah, I wouldn't be able to sit through this. Before the surgery, I could not sit through this without cough drops, without, I had to have everything because I couldn't get through it. It was just, and it was at one point, I didn't even want to talk to people and share my story because I couldn't stop talking.
Eunice: What is the plan now for your care?
Natalie: So the plan right now is I'm currently on chemo. I'm still stage four, unfortunately. It's like I was stage four and I was hoping I at least dropped some stages, but that's not the case. So I'm still stage four, unfortunately. I am on chemo three times a month. The good thing about the chemo is it barely has any side effects that I know of. It might be affecting something internally. It's not. I would know I ask questions. I barely have any side effects. And then radiation as needed, if needed. So I've had radiation twice. I had it once when I got diagnosed because I was in so much pain from the cancer in my spine, I couldn't walk. So when I got the radiation, boom, they're still there, but the pain actually went away. So now I actually have a lesion that has grown a little bit over the past month, maybe. So I just got radiation again. It hadn't even been two weeks. We're focused on that one little area where it actually grew. So I'm going to give it time again to see hopefully the radiation helps.
I mean, it's not, I don't want to be a Debbie Downer, but it's probably not going anywhere. People always want to say, they believe in miracles. Don't be negative. The intent is to treat. Let's just be real. The intent is to treat, especially when you start getting bone mitts. Things are just a little harder to treat, but there is a shot that I learned about. I didn't know anything about this shot until I just got it yesterday. But there's a shot that basically helps people with bone meds to help to supposedly prevent the spread or prevent it from getting worse. So I'm hoping that at this point in my life, if it goes away, number one, I don't know if I'm going to believe them because I've been told a couple of different times I didn't have cancer and it was gone. So I don't know if I believe them. And then I don't want to say I'm okay with it being stable, but if I can live like this and my pain be pretty much under control and it just doesn't grow, at this point, I'll take it because I've had a rough five years, really rough.
Eunice: Yeah, it sounds really rough. But the other thing that I noticed just from our conversations is you're positive. You seem to really remain positive. Where does that come from? And I want to get into your advocacy work and what makes you want to advocate for other people who are going through this diagnosis.
Natalie: So this is probably going to sound wild because I have never been the most positive person when it comes to things. I truly, I try to figure this out. I literally think about this once a week. How are you so positive and you got all this stuff going on? It's simple. My husband. My husband is a very positive person. And sometimes I wonder, I'm like, are you doing toxic positivity stuff? But then I'm like, no, you're not. But he's he just he's super positive about things. And he just makes me feel better about the situation. I don't try to sugarcoat it. Yeah, it does suck. I'm allowed to say that. Sorry.
But he just he just makes things. He just makes things so much better and just trying to help me to become a better person. His thing is OK, Nat. Like a month ago when the doctor called me and told me that it necessarily, it wasn't, I didn't have progression, but I just had growth. I was super down. I started crying. He was like, look. I hate it. You hate it. But cry all day today. Don't do nothing. Sit on the couch, eat ice cream, hot Cheetos, whatever you want to do. Let's sit in it and then let's move forward to try to figure out, hey, what's the next steps? So that's been my thing. I sit in what I have going on for that moment or that day. And then after that, I kind of move on. So say, for instance, a few days ago, someone in the lung cancer community that I had started to grow close with, she got diagnosed when I did. She's about five years older than me. She passed away. And I found out probably five o'clock that day. And I was just messed up for the rest of the night. Because when you have people in your community that pass away, you always think about yourself. So that night, I literally, I cried and I got my, I sat in it. And then after that, the next morning, I was back to my normal self. Don't get me wrong. I was still thinking about her, but I just I don't have time to sit and sob because with me, I'm thinking about the next thing. I'm already talking to my doctor and I'm like, well, we know how cancer is. Cancer most of the time. At some point it will grow.
So once, well, the bone issue and the lung issue, they're kind of treating it the same but different. But I'm asking them, hey, so what happens if things in my lungs start getting under control? What's the next treatment? I need to know. And so they're like, okay, boom, this is what we're going to put you on if you have certain progression. So that's the type of stuff I'm thinking about. What's next is what I'm thinking about.
From Patient to Advocate: Why Natalie Shares Her Lung Cancer Story
And I think you asked me what makes me want to advocate, right, in the community. I need and I want people to know, number one, that as long as you have lungs, you can get lung cancer. I don't want people to think like me, which everybody probably does think like me. Like I said, they think that you have to be much older and smoke a lot of cigarettes in order to get lung cancer. They don't know if so many other ways. There can be environmental factors, risk, radon. There can be so many other things, too, other than smoking.
Also, I know a couple of people that do smoke or did smoke, rather, and they actually got lung cancer and they feel some type of way that saying that they deserved it. And I get where they're coming from, but nobody deserves to have lung cancer or any cancer, in addition to that. So my thing is, I want people, like I said, to know what just by having lungs, you can get this. No matter how healthy you think you are. I also want people to get checked out. I am noticing, especially the older that I get, a lot of people try to self-diagnose themselves. And I know I'm speaking, I already tried to stage myself, so I know I can't have room to talk. What I've learned from that.
If something does not feel right, go get checked out. We are not doing that. We are trying to self-diagnose ourselves, and then it's just turning into something terrible. A lot of people who I meet, they have late stage cancer because they didn't want to go get checked out or they were afraid of what they were going to find out. And I really hate that because I feel like things can be prevented or if they can't be prevented, maybe instead of catching it at stage four, you can catch it at stage one or something and just have surgery. And I feel like it's important, especially in my community and for my age. I feel like I want to advocate. I'm in this group right now with a bunch of women and they're so extremely supportive. I think we're an age from about.
Probably 35 or maybe 32. So about 35 to I think about 55. And we all have either had or have lung cancer. And we basically come together and we have these monthly meetings and we get together and we discuss, life. We discuss cancer, but we also discuss life outside of cancer also. So I believe that it is important that you try to find your community or your cancer friends. I hate to label them as cancer friends, but I think it is important that you have your regular friends and your cancer friends, because it's going to be two different conversations. They're going to be able to relate on two different levels. Also, I've learned that my friends have learned a lot about my condition also. So not only am I advocating, but I have turned my friends into advocates also. So I think that's extremely important too, because I've been dealing with this for five years. They've learned so much. So they're able to go out and advocate with or without me, which I think is extremely important also. So not only am I teaching myself how to advocate, but I'm teaching my friends. They're learning from me. And I want to continue to do this. I've missed tech sales. I'm not going to lie, I do. But if I can make advocacy and being a speaker. I love speaking, by the way. I have two speaking engagements coming up, one in October and one in November. And I just like to speak because I want people to hear my story. And I'm going to be pushing more about long transplants, even though it didn't necessarily work out for me, does not mean it's not going to work out for you. So if you qualify, please ask the questions is kind of what I'm working on.
Eunice: Yeah. And just to piggyback off of that, I mean, it didn't work for you in the sense that your cancer had grown to other areas. But compared to what you've mentioned, and now it clearly does work. So I agree with you that this is something that really needs to be, people need to know about. And we're coming up a little bit on time, but I still have two questions. Are there resources for people who are going through cancer, could be full-on cancer or any other type of cancer that you have found to be very helpful that you would like to share with our listeners?
Finding Your Community: Resources for Patients and Caregivers
Natalie: I have very long social media to be, my biggest resource, if you want to say. I have met so many people on social media that not only have lung cancer, but have different types of cancers. And by meeting these people, they actually connect me with other people and other groups. And I'm able to form this huge community just based off people I know. I like to reach out to people, as you know. So I like to reach out to people. And if I come across your, let's just say, Instagram page, and in your headline, it says, lung cancer survivor or cancer survivor. Nine times out of ten, I'm going to reach out to you and say, hey, introduce myself, let you know a little bit about my story, and then kind of get a feel to see if you want to give me info on your story, and then we can kind of connect. Everybody does not want to talk about their situation. So if I get the vibe, and I can't really say what the vibe is, it's just a feeling that I get. If I get the feeling that you don't want to share, you don't want to talk, I'll just move along. If you ever want to reach out to me, you can.
Also, I think that, so LUNGevity Foundation, when I first got diagnosed, LUNGevity Foundation, and I think a lot of other organizations, they have these mentor mentee programs. And basically what they do is they'll pair you with someone who has a cancer situation similar to yours and you basically can mentor them. So I was doing that for a while and I thought that was extremely great until all of my mentees kept dying on me. So I was like, I got to stop doing this. So I stopped doing that for a while because I would get so close to somebody and their family and then they would die. And so my husband said, I think this is a little bit too much for your mental. You need to fall back. So I fell back. But eventually I signed up again. I guess it's just something that I wanted to do. So I did sign back up for the program not too long ago. I haven't had anybody that they paired me with yet. But to answer your original question, if you are on social media, I think that it's a great outlet or a great resource, especially, I know Facebook is like an older, maybe old school thing or whatever. But Facebook is really good for maybe TikTok is. So I'm not a huge TikToker, but I know Facebook, there's a lot of groups. So I'm in a lot of lung cancer groups. So that helps me out a lot. If you're not on social media, because everybody is not, I wouldn't just try. ChatGPT has become my best friend in Gemini. So I look a lot of things.
And just kind of read about different things. Not to diagnose me, but just try to understand more about what I'm dealing with. So say, for instance, in the beginning, I had more questions about biomarker testing. Even though my doctor explained it well to me, I would go online to try to get different examples and different definitions of what it is. So I think online research could potentially be a resource, but just don't try to diagnose yourself based off Google if you don't have social media.
Eunice: That makes sense. And if there are any resources that you have, we can always share with the community in terms of the specific groups or the organizations. The other questions that I had is, you know, it's sort of tied in together. You've learned a lot throughout your cancer diagnosis, throughout your cancer treatment and even where you are now. Are there things that you've learned about yourself that you didn't even know before? That maybe you're a stronger person than you even realize and some lessons from there. And tied in with that, with any advice that you would give to our listeners who are listening, who may be going through a cancer diagnosis, a family member newly diagnosed, tying in the lessons that you've learned with any advice that you would give to them as they're going through cancer.
Lessons in Strength and Self-Advocacy: Natalie’s Advice for the Cancer Journey
Natalie: So something I've learned about myself is I am extremely strong. Over the past five years, not only have I endured cancer, I've endured a double lung transplant. This year, one of the most probably, I don't know even what word you want to insert, but my grandmother was like my best friend and she died. She died on the same day as my father-in-law and I could not go to the funeral. It was such an impact on me. It kind of set my recovery back because I cried so much, my chest cavity and everything was just messed up. So at that point, I realized that I am a strong individual. All this stuff has happened to me. And I'm pretty much by myself. I go to doctor's appointments by myself for the most part. Keep in mind, when people are up here, they go with me. But when they're not, I go to doctor's appointments. I have learned how to be so independent. It's not even funny.
I'm not going to just say I'm built different. I think I am built different, to be honest with you. I'm just going to toot my own horn for a second. But being a cancer survivor in general, cancer survivors, patients, warriors, whatever you want to call them, we are built extremely different because a lot of people look at me and they say, I don't know how she does it. I look at a lot of cancer patients I know and I say, I don't know how she does it. So we're all set up here saying, how do you do it? How do you do it? We are built extremely different. Not that we want to be tough or we're trying to earn a trophy, but it kind of just happens after a while. A lot of people become numb.
And by numb, say, for instance, I used to have what they call skin anxiety, which they would be nervous about getting skin results. But I don't have skin anxiety as much as I used to now. I've been dealing with this for so long. I'm kind of more prepped when it comes to getting skin results. So I think that says a lot. And like I said, what my husband said, I think advice for people would be start not to just sit in the situation, which that's going to be extremely hard. It's going to take time. I'm not saying you get diagnosed today and then tomorrow, go take a trip to Italy or something, because that's not even the type of that's not what I'm trying to put out. But I am trying to say that eventually you will learn or you can learn to sit in it and then kind of keep it moving to see what the next plan would be. Also, I would say make sure you have a good health care team. I've had so many patients. I think I've had like five oncologists for the last five years, probably one for every year now that I'm thinking about it. But my health care team has been absolutely amazing. I have nothing bad to say about anybody except for some of the emergency rooms. so that's enough story. But I just have nothing bad to say.
Make sure that when you go to these doctor's appointments, my husband told me about this app. I'm having brain fog right now. I can't even think of the name of it. But I have an app on my phone and I take it into the doctor's office with me. I ask them, do I have their permission to record? And I record it because I can't remember a lot of things, especially if I'm by myself. So it records the whole conversation. And then what I can do is come back, wait for it to transcribe, and then I can send it to people. If they ask me, how is my doctor's appointment? Because I'm not going to sit up here and explain to 30 different people how my doctor's appointment was. So that's one thing. Make sure you have your questions. if you do have an app that you can download or you can record on your iPhone. I heard that was a new feature. I don't even know. I don't have a new iPhone yet. But make sure you try to record it and just make sure that you have a good health care team because you're dealing with such a serious illness. Your health care team is really going to become like your family. So you need to get used to them. I talk to my people like we're to the point now where they know my favorite color. So we've literally become like family. It's not just, this is a nurse. This is like my nurse who's like my sister or who's like my mom. It's just, it's really amazing when you have a good team. It makes things a whole lot harder when you don't. And I would say speak up, advocate for yourself. Now, I have had to advocate for myself quite a bit throughout this process. Just giving you an example.
One of the doctors, one of the transplant medications, I was thinking of transplant medication, you have to take transplant medications for life because you don't want your lungs to go into rejection. So I had a doctor who said, hey, I want to put you on three different blood pressure medications. And I was like, you don't need to do three. Let's try to find one that works that doesn't make any sense. So I kind of did this trial and error thing with them. And they were like, you know what? You're right. It doesn't make sense to put you on three. Let's just put you on one. So sometimes you have to advocate and speak up for yourselves because a lot of people will get mad at doctors, but doctors have so many patients. It's not like you, I'm not gonna say you stand out, but my doctor has a lot of cancer patients. So I don't expect them to give me special treatment. I just expect them to listen to me and treat me well. But there are a lot of things that I have to ask them on my own. So just make sure you're not, if you don't know, you don't know, but just make sure you're not relying on your doctor for everything. If you have questions, try to either join a support group and find out some of these answers and then take them back to your doctor. Just try to give the doctors a little grace also.
Eunice: Yeah, I love that. So being your own advocate, but also giving grace at the same time. It's amazing. Thank you so much, Natalie. It's so great to have you.
Natalie: You are welcome. Thank you.
Eunice: Thank you. Although this visit has ended, I hope this story stays with you and you can share it with someone who might need it. Until next time, take care.
