Stage IV lung cancer from symptoms to diagnosis | Jaymie shares the beginning of her cancer story.

[5tba30j33u]

[captions are auto-generated] Welcome to Chronic Love, a supportive space for people with chronic illness. I'm Robin a psychologist in New York City navigating the fallout of a breast cancer diagnosis some years in. And I'm on a personal journey to join together with others who have similarly found themselves facing life challenges in the wake of chronic illness. Together with the generous humans you're about to meet, we welcome you into our discussions. I just remember feeling like what the hell did I do? You know, like, how is it that... How? You know, like, I didn't even smoke. I never did hard drugs. I really lived a straight and narrow life. So I'm like, I don't understand what I did and why all of a sudden now this is my story. How did you come to understand your illness, the severity of your illness? Is it OK if we talk a little bit about that? The only way for me to really talk about that is to kind of go back to the beginning because my diagnosis was the whole procedure was crazy. So if you don't mind, I'll start at the beginning of how I got diagnosed and answer your question along the way, if that's OK. Is that OK? That's perfect, yeah. In April of 2018, I developed this wheeze that really was it was you know, not really that bad. It was something that only popped up when I would go to sleep at night. I would lay down to go to bed and, you know, I would just have this little, like, wheezy cough or whatever and it would go away. You know, and then I would fall asleep and everything was fine. It then expanded into something that happened more regularly. So then it started happening when I wasn't going to sleep. It started happening when I was getting off the subway. Mind you, all this is taking place in New York. I was diagnosed in New York. But it started happening on the subway. It would happen when I went into work. It would happen when I was sitting at my desk, when I was at home. And it became a thing where I was trying to pinpoint maybe it's something in the atmosphere, maybe it's, like, allergies, maybe it's the HVAC system. I'm trying to figure out all these different reasons why this wheeze has now started to follow me around. And then I decided that, you know, I got a cold and the cold went away but the wheeze stayed. And of course, in this day and age, we Google everything and so I, of course, Googled, you know, what happens if your cough stays and your cold goes away and they're like, oh, it's bronchitis and I'm like oh, OK, maybe I have, you know, bronchitis. And so very nonchalantly I went to the doctor just to see what was going on. And he was like, OK, well, you know, here's a breath test and they gave me the breathalyzer test where you like, breathe into a tube and it determines what your lung capacity is. So if you have asthma or allergies or whatever. So I took that test and it came back sort of inconclusive for either of the two, and so he was like, OK, well, I'm just going to give you this inhaler and whenever you feel like you have to wheeze just use the inhaler and you should feel better. And he's like, come see me in two weeks and let me know how you're feeling. I didn't really think anything of it, of course. And so I actually used the inhaler for two weeks, came back to him and I was like, it's not helping. It's not really helping at all to be honest with you. And so he was like, alright. Well, I'm going to write you a script for a cough suppressant and then he just sent me on my way. That was it. There was no X-ray. There was no further communication. It was just, you know, oh, the inhaler didn't work? OK, well, let's get rid of your cough. And here's a here's a medicine for that. And he just kind of let me go. At that point, I just realized, like, I wasn't really getting any help from him and I wasn't really getting any answers. And so I kind of just kept on living my life, you know, for a little while. I was, you know, 30 years old at this point. So, in a relationship, you get that 30 year old metabolism and comfortable relationship weight. And I was like, oh no, I gotta start getting into the gym. But for me, I never really liked going to the gym. And I wanted something more interactive. And so I ended up getting into kickboxing. And so I was doing a lot of high intensity cardio. And so I started to, you know, as my symptoms developed more, I started to attribute them to the high intensity workout that I was doing. You know, so the wheezing turned into a cough and some shortness of breath, which I assumed was, oh, you know, kickboxing. It's intense. You know, I'm not used to this kind of working out. And then the shortness of breath turned into, you know, some back pain. And I just started, I was making excuses for all these symptoms that I had. But I started to know that something was really wrong. There's always that turning point where you realize, like, OK, this is the thing that lets me know something is wrong. And that point, for me, was being in the gym with my, at the time he was my boyfriend, now he's my husband. But we were on the treadmill and, you know, I'm not the most in shape person but I know that I can run a mile and be OK. And so I got on the treadmill. And I was running right alongside him. And I got to about a quarter of a mile and I was like, like, I had to stop. Was like I have, I'm not breathing. And it's like it wasn't like one of those things where you know if you're a runner, you hit that runner's high and you're kind of good to go. It was like no, I'm actually not getting enough oxygen, like, I really, I have to stop. And I realized at that point that something was really wrong. And he was like, you know, you need to get a second opinion. You know, you need to go get this checked out. And I was like alright. And so I made my second opinion appointment. And because I'm a new patient, you know, they kick new patients out, you know, a month or two, like, for whatever reason, doctors are always a month or two booked. And so I didn't get my appointment until about December. So remember all this started in April. And so December came around and I went to my appointment and I told him what was going on and what was happening and he was like, well, have you had an X-ray? And I was like, no. Nobody's given me a chest X-ray. No. And he was like, OK, well, go upstairs and get a chest X-ray and he's like and when you come back downstairs we can talk about the results. And I was like, OK. He was kind of shocked. He's like, why have you not had an X-ray? And I'm like, no doctor has sent me to get an X-ray, you know, I just was like, no. I just never had one. So I went upstairs. I got the X-ray. I came back downstairs and I'll never forget the look on his face. It was like all the blood had drained from his face and he was, like, pale. He's like, are you feeling OK? And I was like, I mean, yeah, it's like, I'm tired but I'm always tired so I was like, but I feel fine. And he's like, your entire left lung is covered in fluid. And I was just like, what? And he showed me the X-ray and I couldn't believe it. I was absolutely, I was just shocked. I was like, I don't, I don't understand how this is even possible. And he's like, well, I need to admit you to the hospital like right now. And I was like whoa, OK, wait. Hold on a sec. Timeout. Pause. Wait. I was like, I was not expecting, you know, I'm not ready to get admitted into the hospital. I had a whole bunch of stuff going on. I was just like whatever this is, it's gotta wait another three days. It's just gotta make it through the weekend. And so he was like, well, in the meantime, let me send you for a CT scan so we can see if this is fluid or if it's, you know, a mass. So I went in and got the CT scan done and then I kind of went on about my business all through the weekend. And I went to work on Sunday and I remember that day being, like, particularly difficult. I just was like, I really don't feel good today, you know, like my back was hurting, I was, shortness of breath, I was tired. I think it was like, it's like you know they call it that, like, it doesn't hurt until you look at it type situation? You know, I was perfectly fine until I got the scan and then all of the sudden I was like, I just don't feel good now. I was like now my body was like, we know something's wrong and so let's start, you know, broadcasting it. But anyway, so on Sunday, I called the doctor and I was like, what was the results of my CT scan? You know, like what's the situation? They were like, you need to come in ASAP. And my best friend, my best friend Shardae was like, so you're going, right? And I'm like, yeah, I'm gonna go. She's like no, no, you're gonna go tomorrow. I'm gonna come up tonight and you're gonna go tomorrow, right? And I was like yes, yes. I'm gonna go, you know. Best friends are always like, get your behind to the hospital. Yeah, thank goodness. So she came up to New York and we went into the hospital and I ended up being in the hospital for six days. And they gave me a chest tube. It was awful. I was awake for it and I felt every bit of it. But they gave me a chest tube and they drained two and a half liters of fluid out of my left chest capacity area. I was basically carrying around, like, a two liter bottle of soda in my chest. Somehow. And functioning. Jaymie! So they drained that much fluid out. It took about three and a half days before it was finished. And they were finally able to take me off the machine or whatever. But while I was getting the lung drains, they tested the fluid. At first, they told me I was fine. At first they were like, yeah, the fluid tested fine. There was no malignancy. You're good to go, like, we're just going to drain this and you'll be fine. And I was like oh, OK, great. Phew. You know, like. Thank goodness. Then they came back and they were like, no, actually, your fluid is testing positive for malignancy. And I was like, well, malignancy is cancer, isn't it? And they were like, yeah. And I was just like, what? Like it, none of it, like, none of it made sense. I couldn't comprehend. People don't lie when they say they say they have out of body experiences. It's real. Like, you really experience things from outside yourself. Like, you're watching yourself get this news and you're like, what is really happening to me right now? Yeah. And so when they finished doing the lung drain, the lung didn't fully inflate because the fluid had crushed my lung down into like a ball like this. And so once they pulled the fluid out, the lung was working on expanding. And so they were like, oh, there's some spots on there that we don't like. We're going to do a biopsy and test and see what's going on. And I was like, OK. But in the meantime, they were like, we're going to send you home. So I went home with this knowledge that I have something going on with me, something cancerous going on with me. I don't know what it is and I have to wait five days for the biopsy test to come back. So that was December 15th or so? December 20th I had an appointment to go sit down and see what was going on. And that was when they told me yeah, you have cancer. It's lung cancer. You know, but we went ahead and did genetic testing and it's a biomarker, you know, biomarker testing and it's ALK-positive. You know, you're going to take some pills. Everything's gonna be fine. Totally totally nonchalant. I mean, we were joking in the doctor's office. He was like, you know, you should switch to a plant-based diet and I was like, oh man, I love my steak and he's like yeah, no more steaks. Like, we're just joking and having a grand old time like he didn't just tell me that I have, you know, a cancer diagnosis. But I walked out of his office thinking that I had some mild form, you know, of cancer and I was going to take some pills and, you know, do some treatment and everything would be OK. And I had no idea. And so I left. And, you know, kind of went home and honestly, I can't tell you. I don't. I don't remember what my thought process was after that. Honestly, I really just don't. I don't recall. But I know I started getting shortness of breath a couple of days later and so I panicked. Because I was like, oh no! Now I'm on, like, terror alert orange at all times for my breathing patterns. I'm like, I'm very much aware if I'm having breathing issues. Of course, yeah. And so this is right between Christmas and New Year's. And so I started having shortness of breath again. And I wanted to see my doctor but he was, you know, away 'cause it's Christmas, you know, he's with his family. Yeah. So I went to my original pulmonologist. The one that did my first original chest scan and let me know that there was something wrong. So I went to him and I was like, hey, you know, I'm I got an appointment. I sat down. I was like, I'm having shortness of breath again. I just wanted you to check and do an X-ray and see if, like, I'm good and what's going on. And he's like, oh yeah, with stage IV cancer, you know, you're going to run into that a lot. And I was like, I'm sorry? What did you just say to me? And he was like, yeah, this is stage IV cancer. Did nobody tell you that this is stage IV cancer? Robin, I burst into tears. Like, I've never burst into tears before. I burst into tears in his office. He mentioned it so casually in conversation, like he was asking me if I wanted cheese on my hamburger. You know, like it. He was like, yeah, stage IV cancer. It happens all the time. I was like. You know, like nobody, nobody said, nobody staged me in my original doctor's appointment. And so I got that news and I think I was in shock. You know, and I was like, of course I'm asking questions. And I'm like stage IV. I was like, how is this stage IV? I'm like, that's like, that's like end stage. Like, that's, there's no more higher stages than stage IV. I'm like, what do you? What are you even talking about right now? I was like, what is my life expectancy? And he's like, well, we've seen people live anywhere from, you know, three to six years. I'm like six years! I was like, are you trying to tell me that I'm not going to live to see 40 right now? Like, I was I was going through it in his office. And I just remember, you know, I just remember feeling like what the hell did I do? You know, like, how is it that, how? You know, like, I didn't even smoke. I never did hard drugs. I really lived a straight and narrow life. So I'm like, I don't understand what I did and why all the sudden now this is my story. So with my lung cancer, I have the ALK-positive mutation. And so with the ALK-positive mutation, you know, there's no cure. It's just treated and it's managed. And so I take four pills in the morning and four pills at night. And, you know, it basically keeps everything at bay. You know, it's gotten rid of any other extra areas. I had some few areas in my lymph nodes that went away. I had one that was down by my liver that's all gone. All the tumors that were in my upper back area are all gone. And the only thing that's left right now is just the main tumor on my left lung. And so that is my prognosis. I just take this medication until my body eventually develops a tolerance for it. And then I'll be put on to whatever the next line of medication is that's, you know, the next newest thing on the market. And so the way I find out if it's working is I either develop more fluid in my lungs again or I start to get back pain or I just I start to feel like I felt before I started taking the medication. And so the scans help to determine if the medication is still working. You've been through so much and everything we've talked about thus far, you know, details details a lot of that. How are you feeling now? I feel normal. Is that weird? Like, I almost, I, like, almost forget to take medication sometimes. The doctors said that this would happen. The doctor said there will be a point where I felt like there was nothing wrong. And I'm grateful. That's another reason why I'm grateful. I actually can actively forget that I have this sometimes. There are times where I can go through my day and just be like, oh, shoot. Yeah, I do have cancer. Damn. Like, I know there are people who don't have that luxury. There are people who are reminded every day, every second. And there are people who are, you know, living their last days with it. You know, and they're very much aware of what's happening. And so I'm grateful that I have the opportunity to even be in this in the space to forget that, you know, I'm dealing with what I'm dealing with. And I mean, honestly, I I'm just, like, that's and I hate to say that too. Like, that's one thing I hardly ever say. Because I realize how privileged that sounds. And that's never my intention to sound privileged. You know, especially in regards to what I have going on. It's merely just to reiterate how grateful I am for my path that I walk. You know, it is not to downplay anybody else's journey, anybody else's walk that they're on. Because I realize this is tough. And, you know, we all have our different paths to walk. And I never want to take away from anybody's anybody's story, anybody's journey or to diminish anybody's walk at all. So that's never my intention. It's really just to tell how grateful I am for where I am. I almost feel like like I can do this. If you're watching this and resonating with any of this, we want you to know that you're not in this alone. That you're never in this alone. Until next time, sending love. Until next time, sending love. If any of this has been helpful for you, we welcome you to go ahead and to click the like and subscribe buttons. If you'd like to join us for a candid discussion about your experience with chronic illness, or if you'd like to connect to simply say hello, we welcome you to reach out through any of the social media platforms or through our website. And all of our information is listed below.