Share Your Stories

My name is Lindsay. I am 42. I have two kids, a 20 year old daughter and a 16 year old son. And, I'm actually engaged as well. I just got engaged, and I have three stepchildren in March of 2022. I, you know, was very fit, working out all the time, eating very well. I developed some pain in my side and I thought, oh, my goodness, I just did something in the gym and, you know, pulled a muscle or something, and I went about three days to where the pain was just so agonizing. I thought, okay, well, I'm going to get on Doctor Google and see what Google says. Google said it was a, could be my gallbladder. So I was fully expecting because I also had some pain in my chest as well. And I thought it was just indigestion. And so I thought, well, indigestion, pain in my side. Kind of like right underneath my ribs. surely that's what it is. So I went to the emergency room, fully expecting them to keep me overnight. You know, take this gallbladder out. and he, the doctor came in and said, for sure, it's definitely your gallbladder, but let's do some scans. See what they say. they did some bloodwork. The bloodwork came back totally fine. then, they did a, chest city or not a CT, but an extra chest X-ray. And it showed that there were some fluid in my lungs. And so he was like, well, you know, have you been sick? I said, well, you know, I have had a cough, for a year, but I had just moved into this house and we thought it was mold. But I said, you know, I, I've had, this cough for a year. And he was like, well, you probably have pneumonia. That's why your chest was hurting. So he then did a CT of my abdomen. And then once that came back, he came into the room, sat down at the end of the bed and said, Miss Lindsey, we're going to have to keep you. you have cancer. And I was like, wait, what ever. My bloodwork just came back completely fine. You know, you just did this chest x ray. And he was like, well, we need to go further, into testing. His first thought was that I had ovarian cancer because he did a c, a 125 marker test that showed how the, an elevated level of, of the cancer marker for ovarian cancer and what he thought was in my stomach, the cancer that he was seeing was actually fibroids in my uterus. But in addition to that, he saw all the cancer in my liver. And when the, tested my seat of the abdomen, she just happened to get the bottom of my, lower lungs. And then that's when they saw all of the nodules in there as well. So once they got me into the hospital, kept me overnight. the oncologist came in the next day, and she agreed with the emergency room doctor that it was probably ovarian cancer that had spread. So she said, let's do a liver biopsy. And, you know, see, it was let's start to stage you. So they did the liver biopsy. She came back and she said, you you're not going to believe this, but you have lung cancer for excuse me. She was like, have you ever smoked? I said, no, I've never smoked a single day in my life. She said, okay, well now we're going to have to do a brain MRI and more testing, pet CT, all of that, and then that's when they found it all in my brain. and then and my liver, my bones, my kidneys. and that's that's how it started. So immediately we knew we were I was stage four. They told me I had a couple of weeks to live. At this point, I'm so frail. I'm 112 pounds. I can't eat. I can't sleep. I'm. I'm the dog bone. And, finally, two weeks later, they. I got the call with the, know colleges, and she said, you have, we've, you know, we've got your results back, and you have non-small cell lung cancer with ALK positive mutation, metastatic to bones, liver, brain, lungs. So, in the meantime, they had already been setting me up for brain radiation and different radiation and trying to do different chemo, but, they were really hoping to get the targeted therapy treatment if it was in fact a gene mutation. So thankfully it was. And I'm still here today. When they first told me I had lung cancer, immediately, as you know, the stigma around lung cancers, you know, I smoked. So I immediately said, I have never smoked ever in my life. How do I have lung cancer? And, you know, the ignorance that I had had no idea that this could be possible to anyone. Literally anyone with lungs can get it. So I was definitely taken aback. I was a single mom with two kids and you know, I had a have a full time job. And, you know, I thought, oh my gosh, what am I going to do? What are my kids going to do? You know, how am I going to get through this? thankfully I had a huge support network of friends and family, and so they're the ones that got me through everything. Once they found out that, I had the gene mutation, they put me on a targeted therapy pill called elective or Olson's. And, they started me off with 1200mg, and within two weeks, almost all the cancer was either gone or completely stable. It was. It was crazy. but then I had. And an insane amount of side effects, so that was difficult. However, I got so I wound up getting on elective in April of 2022 by September 24th, 2022. It had stopped working and I was in ICU for ten days. in the cancer had spread far worse than it was prior to that. So then, the cancer had spread to my brain in such a way that it was, they said, hundreds of tiny little millimeter lesions were all over my brain, which includes left home and into yours. So I also got the letter meningeal disease, which is basically the cancer of the in the fluids in your brain and in your spine. And then it was, it took over my body. The fact that I was still alive was outstanding. So I was at one emergency room in ICU. they couldn't figure out how to treat me, so they actually, my my boss at the time, who's the owner of the Boston Celtics, she actually transferred me to Emory University Hospital, and they saved my life. So I was again in there for about ten days or so. They said, you know, this is very difficult to treat because it's gotten this far, especially with lepto meningeal disease. Once you get that, the, the outlook isn't that great. From what they told me, but I got on. I was able to get on the second targeted therapy treatment called Laura Platinum and that worked also within two weeks. I mean, the cancer was pretty much gone. And that was I mean, I was in a deep, dark spot at that time because, I mean, they basically sent me home to die, but also had a glimmer of hope that this medicine would work. And sure enough, it did. Here I am, two and a half years later. Laura, a lot of it has saved my life 1,000%. I can't knock that because I would prefer to have the side effects. Then, you know, the the latter. I love my life, so I like to be here. But Laura a lot live is very aggressive. hallucinations. not only sight, but smell. incredible fatigue that sometimes it's impossible to get out of bed. So I have to be on other medication to counteract that. Stimulants. And, it causes a extreme amount of edema, so I have to be on the water pill every day, which in turn, messes with my kidneys, which then in turn, I take more medicine. another major side effect that people don't really talk about. And I think doctors, because this is still a newer medicine. They're not checking for cholesterol. cholesterol is actually like the number two side effects. So now I'm on a statin. but that's something that I had to bring to my doctor. And the only reason why, she even checked was because I saw it on my support group page. So, again, getting into the community is the best idea. other side effects are cough, pain. dizziness. I never had an issue with sight. My eyesight is going. So now I'm on a very heavy regiment and glasses or contacts. there's just there's a lot of different things. Lorna or platinum either causes you to gain weight from eating too much because you crave sugar, and or you gain weight from the edema. Or there's the complete opposite and you don't want to eat in. You lose too much weight. So the side effects are all over the place. but I would say the main ones are hallucinations, fatigue, cholesterol, all, and just kind of like a general unwell feeling. So I suggest if you are on erlotinib, drink lots of water. I try to drink a gallon of water a day. Try to eat well. Yes, I have some snacky stuff, you know. Chocolate. Can't get rid of that. And for all the haters that say, sugar feeds cancer, we need sugar. Sometimes. I'll continue to take laudanum for the rest of, it's it's it's efficiency. And then we'll radiate the pop up tumors. So anything that pops up will be weeding the garden, essentially. So I had a, I did a a treat, one treatment on one brain tumor. I've done, treatments on the top of my cervical spine, the, bottom of my cervical spine, my thoracic spine and my left hip. So mainly everything that's kind of popping up, so to say, is my bones and my brain, my lungs are completely stable. My liver is stable. kidneys are stable, so that is fantastic. but, you know, I've, I've gotten to be friends with the radiation techs, so it's been kind of nice having a second family. I get scans every three, 2 to 3 months, depending on what's going on. You know, if if, like, for instance, right now I have some radiation necrosis around the brain tumor, which can sometimes be worse than the actual brain tumor in some of the symptoms. You know, it's it's basically edema around the brain tumor. so because of that, we have to watch that. just to make sure it doesn't get, you know, out of hand. They think that maybe it's a possibility they didn't get the full tumor. And so that's why it's so causing. I got that. let's see, that was March, 2023. And so I still I'm having kind of an issue with it. So we're just watching that. So I get scans for that every two months. my hip, because I had, I had, five treatments on my left hip that is a little bit more stubborn because it was a bigger area. and insurance hasn't been great about, approving the sbrt. They just want to do full blown radiation. And I am only 42. I still have a full life to live, and I don't want to be completely crippled because of my insurance company, you know? So we just, keep on top of that and keep going with those scans and then, my lungs and my abdomen, we basically just do every three months now. What kept me going was my outlook on life and being positive and willing myself to live. Essentially, I have two kids to, to be here for, and now I have a fiance and stepchildren. and my family. But the biggest thing that I used really was journaling. sounds crazy to most, but manifestation. I woke up every single morning, and I still do. I wake up every single morning and I tell myself I'm cured. I'm healthy, I'm strong. And it has gotten me through some very dark times. you know, my friends, my entire unit, I don't know, 25 women who have been outstanding and helping me from day to day. you know, just my faith and believing that I'm going to be okay and honestly, helping others has actually helped me as well. So I have, a couple of friends who are influencers. social media influencers. And my friend Ali told me I need to start a TikTok page so that, you know, I can tell my story so that someone else out there can see that I've been through all of this, and I'm still here. So. So can you. So I get messages on all day, every day on TikTok and Instagram. And it's, you know, people who don't necessarily want to be, you know, making videos on TikTok or Instagram. They just want the information. So they're sending me messages and telling me I'm inspiring them. And I'm like, oh my gosh, never in a million years would I have heard that. You know, but it's for me when I had some people, when I reached out to some people that were also in the community, and I reached out to them and they gave me a helping hand. It truly meant so much to me that I wanted to do that and give back as well. So helping other people truly helps me every single day. My advice to someone who comes across, my page or anyone else's page with lung cancer. don't be scared. Don't be afraid. advocate for yourself. That is something that I can't tell people enough whether it's anyone with cancer or headaches or, you know, an eating disorder. Advocate for yourself. Advocating for yourself is the only way you're going to get through this. know all the information. Know all the facts. any a lot of cancers right now, there are gene mutations. So ask about that, ask about getting biomarker testing and really just stay on top of your symptoms down. You know, join different groups, join social media groups. I joined a, an ALK positive lung cancer, Facebook group. That's a so a great community of people that were able to bounce, you know, questions back and forth of and, you know, I want people to always know that they can reach out to me if with any questions. I really just want to, just to stress advocating for yourself. I had to go through four different oncologists before I found the right fit for me. because this person has your life. Your life is in this person's hands, essentially. And you have to know as many facts as you possibly can to get the best care for yourself. So continuing to advocate for yourself, and if you're not getting the care that you need, then move on. It's there's no shame in moving on to another oncologist. And even if it's in the same practice, if you're not getting what you need, this is your life. You are who's important. Who?