Doctors Thought I Was Going To Die - Eugenia | Stage 4 Lung Cancer | The Patient Story

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If I went home, I knew I was going to die. So sometimes you have to make hard decisions to get to where you need to go. My name is Eugenia Horan and I am 51. I'm from Syracuse, New York. I have been an artist my whole life because I'm weird and I like to make things that are weird and, When I was 46, I was diagnosed with poorly differentiated non-small cell lung cancer. I think it started Christmas of 2018. I woke up sick with a cold or flu or something. I wasn't too happy about that. And it took a while to get over. But I did get over it, but not completely. And I started noticing tightness of chest and little specks of blood that came up when I coughed. And I was nervous about that because, like everyone else in the world, I googled it and it's oh, it's really nothing to worry about. But there was one night in particular where I wasn't coughing. I called it the equivalent of a nose bleed out my mouth. Blood was just coming out my mouth, and I would soak through tissues, and I put them in a pile and so forth, and I thought it was an anterior nose, because yet again, still on Google. And I took a picture of it and I'm like, I gotta go to the doctor. And so I wrote, my doctor's nurse, who was a friend of mine, because you have the level of anxiety and you make friends with the nurses because they are your best friends. And she got me in that week, and I'm not someone. This was, February 15th, 2019 at this point. And I went and I did everything right and made a list of my symptoms. Tight chest with had some weight loss, but the things I found concerning was my pulse was 150 vtm, and it had been high like that for a while. And I thought, I'm just really freaking nervous. And but yeah, the blood that I coughed up was concerning. And I thought, well, this is something I can't fix myself. I'm going to go to her. She's going to tell me it's something and fix it, because getting me to go to a doctor's office in February. No, I'm a germaphobe. And, so I went and I talked to her and I told her everything. I'm like, I'm adulting and super honest. I showed her the pictures. She listened to my lungs. They think it's anxiety. I think you just get yourself all worked up. I'm like, sure that blood comes out my mouth. She's like, these things happen. So I asked her as she was leaving, I said, hey, why don't we do some blood labs? Because getting me to do blood labs also was not easy. And she's like, that's a great idea, isn't it? And, so my friend the nurse came in and she drew blood and I thought, I've done everything I can. And my husband and I drove home and the phone was ringing. By the time we pulled in the driveway. I had not done great, the blood work, but I had mercilessly failed something called the D-dimer, which measures your blood clotting. And if there's anything wrong with your blood clotting. And apparently mine was wrong. And so all of a sudden, my doctor thought I might have something wrong with me. So she thought I had a pulmonary embolism, and she wanted me to get in for a scan that day. And so I waited on that. And I did get in that afternoon. First routine scan. Terrifying. And she had us wait there for the results. And then all of a sudden, Monday, everything is blowing up my phone. All these things because she's like, I want you to go see this thoracic surgeon I was on Monday. It turned into cancer or probable cancer. And I had, an attitude about it, if you can imagine, because nothing had changed between Friday and Monday, and they kept booking me for Pet scans. I kept canceling them because I have well, I have two disease, I have cancer and I have panic disorder. But as soon as I had lung cancer, I was supposed to not have panic disorder anymore. And they were very frustrated that that didn't magically happen. And then I didn't just get cool and calm and climb into a Pet scan. I'm like, I can't do it. Like, I don't know what language to tell you that. And then you understand, I physically cannot do this. I finally got to do it. This is 2019, so I telehealth because I couldn't get there if I agreed to talk to me on the phone. And he said, well, you've got a, five centimeter mass at the apex of your right lung, and you've got another mass sitting on top of your right main bronchi, and it's crushing. It's only a third of the air is getting through, is it? What I want to do is going to take in those two upper lobes, take them out. And unfortunately I won't be able to get to the cancer on top of your bronchi, but you'll be in and out and I'll be no problem at all. And when he said that, I'm I, I don't believe anything you just said because it didn't make sense. I said to my husband, we're going to have to figure this out ourselves, because every treatment that we were offered wasn't curative, it was palliative. And I'm like, it doesn't make sense because I, I want to live. I made an appointment with my mom has, p-h, which is a different lung disease, and she's got a story to, I made an appointment to see her doctor and finally showed up. And I'm super nervous because this is the first time I've seen an oncologist for months after diagnosis. And I really even haven't been diagnosed yet. Just you know, there's a tumor or tumors. And that doctor didn't show up. But a different woman who I would take a journey with as we say, was there. And she agreed to see me, and she saw me for about two minutes, and she admitted me and I spent, some time in the E.R. in there. I finally got the biopsy that had sort of been at the top of everybody's mind for a while, because this doctor wasn't sure if it was lung cancer or lymphoma. And, I got I did the biopsy. It it really sucked. And when it came back, it was useless because they said they hadn't pulled any useful tissue. And later when I got my files, when all is said and done, it was because they had biopsied the wrong lobe of my arm. I was. So those are to blame you, not me. Like you didn't give us any useful tissue so we don't know. We won't do radiation. We don't really know what to treat you with. So at that point, the tumor had gone through my bronchi and was going over my trachea. So, my doctor, my new oncologist said, I want to start chemo and I want to start it today. And I said, no, no. And she said, well, I want you to think about that because she's like, do it. Don't do it. I don't care if you do it. You probably have three months. If you don't do it, you have a month. And so I thought about it and along with panic disorder, I had something called a metaphor phobia, which is a pretty severe phobia. Vomiting I always I was somewhat hesitant of, the chemo, but I couldn't figure out how to get out of where I was because at this point I couldn't walk anymore. Said I am 74 pounds, I am not. Everyone is treating me like I'm dying and I'm. And I'm really, really confused by that because I hadn't seen anyone that was sort of like, it's over, except for one hospitalist that was just in, and he happened to be on his last rotation, and he was amazing. But he went in there and he got down on his knees and he would talk to me, hold my hand. He's like, you got this. He's like, this is just a chess game. He's like, you just have to wait. And he said, it's all up here. Is it? And he was the first person to just give me hope and say that he thought I could do it. So ultimately, that and being out of choices and my mother and my husband staring at me saying, you know, chemo made me change my mind. And because I didn't have a plan B, like if I went home, I knew I was going to die. So sometimes you have to make hard decisions to get to where you need to go. And so I was started on what was called my doctor called Baby Doses because she was afraid that the trachea tumor would break off and choke me to death. I did start that. And and that's started that day in my room, the 5:00 on a Friday. Two nurses showed up to administer chemotherapy in my room. I started my weekly doses and. I got a bit of an appetite back. So I got better a little bit, but I managed five weekly doses with the one week off. And then that started. I went to the hospital June 5th, I started chemo. June 7th I passed out and I hyper cap neck respiratory failure episode July 16th and staff rushed me to the E.R. again so that tumor had gone and we would soon find out it was covering 95% of my trachea, and it was a friable tumor, so it was bleeding. People said there was no fix, but, my husband and my mother like me. So they asked if I could be transferred to a higher level care center. And so from there there was brachytherapy, which is internal radiation. I was doing external radiation, repeated cryotherapy, and then the piece of resistance, the CyberKnife was executed. And they did get that tumor out by the two two train method of I think I can, I think I can why don't I keep trying? So it took nine days, but they did get it out and they learned something. And then I never saw them. So, the last thing they did was the cyber night and they put me on a trick, or they inserted a trick. They didn't put me on it. After I was awake for three days, man came into my room at bedtime because that's the best time to give some bad news. And he said she has a blockage in her bowel, that if we don't get it out in three days, she she have about 72 hours to get it out or she's going to die in three days, because at this point, life was ugly. Like I, I laugh telling my story because that's how I get through things. And I'm looking and I can't talk, I can't walk, I can't sit up anymore. I can't turn over. And people aren't really being nice to me. I just stared at them and cried because they knew they were giving me a surgery. I didn't want, I didn't need, and that's what happens. So when people ask for advice and I don't ever let them take your voice, I woke up from that situation to the news that the blockage in my bile was cancer. And so I turned stage four in the ICU, which you don't want to do. Because when that message was delivered, I actually watched my nurse erase my entire treatment board, and I struggled to ask her why. So we don't treat you now? You're stage four. And I couldn't figure out why. And I couldn't ask why. And so it was very eye opening at that point. I was about, my weight was in the 60s because if I, if I jump ahead the entire time I was in the ICU, which would be 25 days, I was only fed four times. And that is not enough. This resident, she said, I had matched with something called Keytruda and I was like an 80% match. And going forward, if there was a forward, that would be a really good thing for me to try. So as it meant that eventually I got sick enough that the palliative nurse put in a note that maybe it's better that I go to to hospice. So I just celebrated my fifth hospice day because we celebrate Hospice Day because it was one of the happiest days of my life, because I got there and I was like, I'm going to live because that's what normal people say when they get out of the ICU. But I didn't doubt it. I never wavered, I'm like, I'm going to be healed. And I was super happy. And everybody else, I sort of pinch faced and worried. I returned to the original oncologist, do chemo, don't do chemo, I don't care. I returned to her and, still sort of 60 pounds ish and I couldn't even hold myself in a wheelchair. So I got him holding me in a wheelchair, and I'm there with my mother. And I said, I'm here to to ask you for Kateryna. But she said, I'm afraid the Katerina will kill you. I said, I am, two weeks past two weeks to live, so I'm not so much afraid of that. I'm more afraid to just dying. And she finally just sort of broke and agreed to do it. I started Keytruda August 29th, 2019. I tell people for Hope that all of this stuff happened and what. I will say cured me was two hours worth of infusions as four 30 minute infusions for these people that did not know what could save me. It was their medicine that I used. And then I asked for that. I was refused, but I don't take no for an answer. I'll leave them with a pet peeve of mine, which is the word incurable. And I've heard this word so many times in the past five years where people come up to me and they say, my doctor said that my cancer is incurable and I'm terminal. Think, what the hell did you think? They said to me, it's been five years. I was a lung cancer patient that was going to die and that's all they ever saw.