Cancer Survivor Story: How I Got Diagnosed with Lung Cancer | Ashley R. (1 of 3) | The Patient Story

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i'm on this journey i was 36 years old i was tired but who isn't tired you know you work 40 50 hours a week but my husband was like do you need me to go with you and i was like no they're just checking the incision it's not a big deal i'm gonna zoom over go in let him check everything and come back and go to work that did not go down like that so he comes in the thoracic surgeon with this report and it's like are you by yourself and i knew right then what was about to come um i just had this dark cloud of empty that just left you know it was i can't even explain it but he showed me the skin it looked like the most starry night you've ever seen and my lungs and those are all little tiny uh tumors they concluded that this was an unfortunate case of non-small cell lung cancer at that point i was like okay i'm not gonna fall apart i'm gonna blow up i'm gonna do this i thought i was being punished for something you know what's wrong in my life that i'm being punished but ultimately i saw people that were living with this and i'm like oh there's hope i i can i can keep going i'm you know i'm not gonna be taken out of here tomorrow you know when i see or hear of somebody that's newly diagnosed with cancer regardless of what kind you know i feel compelled to reach out to them to say hey you've got this you're going to fight it's going to get rough but you're going to push through even when you feel like giving up because giving up isn't an option i am proud to tell people i've been here for 43 months to the person that just started last month or today or last week to just give hope this is not a death sentence we didn't know what tomorrow held before lung cancer and we certainly don't know what tomorrow holds with it so i try to keep that perspective as well [Music] hi everyone it's stephanie with the patient story and i hope everyone's doing well out there i'm so excited to introduce our special guest for this conversation today ashley who's here to share um your story ashley about lung cancer getting diagnosed with it and living life uh what that means for you so thank you for joining us today thank you and thank you for being here yeah i'm i know there's so much to go over but before we go into your cancer story i i really love to ask people to introduce a little bit about themselves outside of the cancer context because as we know we are so much more than a diagnosis so what would you like for people to know about you oh goodness this is always the fun part um i'm from mississippi i am an air force wife um i am a mom to a spoiled little datsun so if you hear barking it's just her um i was in higher education in my career for many years i was a registrar at my local community college and also worked in the registrar's office at the university of alabama i enjoyed students and all of that i've missed them sometimes um i love musical theater i've spent a little bit of time on the stage um i've hung up my heels though because i can't remember lines anymore so that's that um but yeah that's that's pretty much me in a nutshell not too exciting are you kidding that's very exciting everything about you is so excited that's so awesome i want to get more into the the theater and hopefully we get some pictures or something of you on stage but um i'm going to work that out yes please and thank you to your husband for his service and for you you know um as the partner and so appreciate that so much um i also wanted to you know really highlight sort of the beginning of your story into into how you found out you got cancer because um for some people it's asymptomatic right it's something that isn't obvious and for you it was a gynecological situation you had a bartheline cyst and um that's right there in the glands and so you had to go and and get that checked out how did it really well i actually know you said that you went to the hospital eventually because you had to get it really checked out um and it was a ct scan that was the first red flag so ashley could you talk about what happened at the hospital so um the doctor admitted me right away um due to the severity of the infection and he said but first i want you to go to the imaging center so that we can know exactly where the infection is and it's just typical of an abdominal ct to go up to the lower portion of your lungs and that's where nodules were notated they thought well it's not uncommon to have nodules show up in the lungs when there's infection in the body and so he was like we're not gonna worry about that but we are going to be solution minded and figure out exactly why so two weeks later you know we looked again and they were still there when i went back for follow-up but nothing in the hospital was mentioned about um the lung situation at that time we only dealt with the the issue um that i was dealing with right then and there and but he didn't you know he didn't forget it he was solution-minded he could have said oh it's from the infection we're not going to worry about it and sent me away and then i'm a ticking time wrong um but he was very solution minded and kept a watch on it um and then forwarded me i always say punted punted me to a pulmonary specialist to you know look into this and it was very rare and so he felt like it it needed attention it's so nice to hear ashley that you had someone who um was you know mindful and really paying attention and not just saying like ah you know you go home and you take care of this but kind of really led you to the next person and so the pulmonary specialist you see uh you know gives you a bronchoscopy so they're checking your lungs your air passages can you um describe that procedure just a little bit and what else was done at that point he initially did a breathing test which it was like if you know anything about how it's rated it was like a 94 i was breathing fine if you've never had one it's so hard to do all of that in and out and uh but anyway i made it um the bronchoscope i was um pretty much under anesthesia kind of in a twilight zone kind of thing um you know they did put me to to sleep but it wasn't like full-blown i didn't know what was going on but i woke up pretty quick too and um you know they went in got some cells evaluated those and it was non-diagnostic they couldn't um he did his own scans of course but um it didn't tell them anything it was non-conclusive and so then we went to a needle biopsy and um he you know obviously went into my back to the biggest nodule that i had i had over a hundred spread across both lungs little bitty tiny one millimeter or less and um there was one that was like three and so he went in to grab some tissue from that nodule that was a little larger than the rest and that too was non-conclusive non-diagnostic and by this time i'm like what is wrong with me um he thought he asked questions like did you do you work in the soil you know do you garden do you plant flowers or do you work in a um a plant of any kind and of course those answers were no and um he showed me the scan it looked like the most starry night you've ever seen and my lungs and those are all little tiny uh tumors but he didn't you know he said normally we would watch this for four months come back see if anything has grown if everything's the same then these are benign and we're just gonna watch them but he said this is very rare i was 36 at the time i'm 40 today and he said this is way rare for somebody that doesn't work in the soil doesn't work in any sort of plant doesn't work around chemicals um never smoked so he too was very solution-minded um in trying to figure out what in the world you know i thought okay well i have um some sort of fungus in my lungs because we he mentioned that and that you know who knows why you get that i thought okay i'm gonna get an inhaler and we're gonna blow this junk out and i'm gonna roll out i wasn't coughing i wasn't you know i was tired but who isn't tired you know you work 40 50 hours a week you know i wasn't losing weight i wasn't you know nothing had changed and so it was all those you know this is this didn't tell us anything and then that didn't tell us anything and so i was like oh so even though sometimes you don't want to know you at this point i wanted to know and that's when i was sent to a thoracic surgeon so my patience was on edge of course i'm like i need to know what this is and i need to know now and sometimes it's it's that i mean really the waiting period is the worst part right when you don't have anything to go on you're just can i get something so i can have a plan here i just want to understand what's going on and let me understand this um clearly so you weren't feeling any symptoms i mean you weren't like coughing or feeling anything shortness of breath or anything like that no none of that okay you know the occasional allergies i'm in mississippi i mean we have all sorts of stuff and so i have horrible allergies or get a sinus infection you know every year but you know nothing out of the um nothing abnormal at all okay and so you are sent to the thoracic surgeon um tell us about you know what he or she said to you in terms of what they wanted to do and if you could describe that that process well he wasn't there to be my friend at all he was all about business and cut and dry so that made me a little uncomfortable um but he was so knowledgeable and he was very the very best i feel like that i could have gotten in the whole entire state so he comes in he plops down and he's like okay here's what we're gonna do we're gonna collapse your lungs we're gonna put a tube down we're gonna go in and take out two or three sections of your lungs and we're going to send it off to mayo or we're going to evaluate it they didn't know what it was so it ended up going to me i'm getting ahead of myself um and so i was just staring at them like hold on back you're gonna do what and um i was like do we really have to do this and he said no it's up to you we don't have to do anything but if you want answers this is what we need to do he was one of those guns and i was like yes sir so we did it he's like let's do this next week whatever so um into the operating room i went and um it was um that was the first time i had ever had anything major done surgery-wise that was the first time i had experienced um you know real anesthesia not just the twilight stuff and um so i had a lot to to take in you know the papers that if they you know put the tube in and it did something else to something else in my body i could you know they weren't responsible it was possible that you know there could be an issue with my lung and they would have to go back in if certain you know if air got in there and so it was all the bad things they told me that could happen and i'm like okay i can do this they're the experts not me i won't know it whatever it is and so waking up i was in a lot of pain i felt like you know there were knives stabbing me in the chest but um a few hours with more a morphine pump and i was okay he removed the line remove the tube and um [Music] i was i was okay the tissue he called in his other um cohorts if you will to look and he told me he would be able to tell me what's going on by the time i left the hospital that next day but he did not know he said he'd never seen anything like it it was like ground glass looking nodules he said and um so that's when the path went to mayo clinic in arizona and they made that the final conclusion but even then i still didn't have answers and um it wasn't until about a week later when that pathology was returned to him from the mayo clinic that they um and i'm looking at it here that they concluded that this was an unfortunate case of non-small cell lung cancer that's a lot i mean just like you're waiting waiting and then boom right it's like it just then just happened so quickly um the so the lung tissue removal uh when you woke up do you remember how long that took it was just they gave me a little bit more anesthesia than normal i don't know if i was being difficult or what but um i it took me a little longer to wake up than most and so i think the whole process was maybe around an hour if okay and that's from prep to um you know in uh recovery and whatnot but i don't i don't recall exactly but it wasn't very long at all like you would think that seems like a daunting process but you know they're the expert and that was their first time and so and uh how long did it take for uh mayo clinic for everything to get back up with the results again it was about seven days a week okay they tricked me at the doctor's office because he said the nurse called and said he was going on vacation and he wanted to check those incisions on the side um and so i was like okay so you know told my job and i was just gonna run over there my incision was fine i knew it was fine but okay and then come back and here he comes in with that pathology report i was by myself but my husband was like do you need me to go with you and i was like no they're just checking the incision it's not a big deal i'm gonna zoom over go in let them check everything and come back and go to work that did not go down like that so he comes in the thoracic surgeon with this report and is like looking behind the door you know looking around this little tiny room and it's like are you by yourself and i knew right then what was about to come i knew um i just had this dark cloud of empty that just left you know it was i can't even explain it but um i was like yup i'm by myself and um at that point i was like okay i'm not gonna fall apart i'm gonna bow up i'm gonna do this and i say often that was the for lack of better words the gut punch the sucker punch of my life and many i know also can relate and would say the same but came out left field for sure um especially when you're thinking oh it's just benign nobody has lung cancer in my family i don't smoke this ain't lung cancer but it was i mean gosh like gut punch really sums it up i can feel it because you you know and yes a lot of people we grew up with the ads about you know don't smoke and the the lung cancer things oh you're not well if i don't smoke so there's that i know the campaign for a lot of people right now it's been going on is if you have lungs you can get lung cancer but it's not something that we grew up with maybe um and you're by yourself and so can you recall that moment i know you were trying to keep it together but i mean what was going through your mind like do you how i mean i'm sure you remember that moment so clearly it was almost like an out of body experience a dream i was gonna wake up from um and he was very uh not compassionate he was like i'm sorry darling this is lung cancer here you want this report she'll help you with the rest good luck pat pat on the shoulder out he went unbothered you know which i know it's not his job to feel sorry for me or to cuddle me or whatever but it could have been a little bit more i mean this is life-changing here but anyway he he did a good job bedside manners were not his thing but the nurse was very kind to me and said i'm gonna be praying for you you know um which i welcomed but i kept it together until i was in the room alone when she went to make the phone calls and i opened up my phone and text my friend that was a um hospitalist for that hospital and was like i have to see an oncologist who do i see and you know i was fight i could hardly see the the letters and numbers on the phone because i was like fighting tears and um the lady came back in and i told her who i wanted to see um as far as the oncologist goes based on the recommendation from my friend thankfully i had somebody on that side of things um that was in the know because i i didn't know any of them and um i remember walking out of that doctor's office and the ladies at the front desk or like hey how are you they had no clue what i had just heard they were just doing their job and being nice but i remember just not looking up at them not just i looked down and was like fine handed them my paper gave them my debit card to pay my copay or whatever it is i had to pay and i just like kept my head down walking out that door i can tell you exactly what those carpet tiles looked like even today and so i uh was dressed for work so i was i had on dress pants and heels and um i often say and this is the best way i know how to put it i felt like i had cinder blocks for shoes on my feet just putting one step in front of the other just to get the heck out of there just get me out of here and when i heard the click of my car door i lost it i lost my mind i was weeping and wailing if somebody was nearby they likely would have called a crisis intervention officer to come help me because i lost it and i cranked up my car and just sat there and then i had to call my husband and say this is what's happening and then i called my mother she's like do you need me to come and get you i was like no i can drive i don't remember the drive to her home but um i um and then i called my dad and so those are the three that i called um and then the next day was a pet scan to just make sure there wasn't cancer anywhere else in my body so it was a big two days i was on the phone the rest of the day telling people and people were calling me and people were sending messages because word traveled like wildfire and i was just mentally exhausted um from the whole thing and to have to um you know think about that and relive that in my mind it's like [Laughter] because it was you know people say well it's not a death sentence well of course i went straight to google and it was like oh you're you're out of here two percent or it was in the teens at the time you know survive beyond five years so i'm like i'm out this is the end and so that was heavy you know thinking about my own mortality i still am forced to think about it but i'm almost four years in and so i have gained a lot of strength in that amount of time for sure oh my gosh thank you for sharing that actually i mean what a whirlwind i mean that's an understatement but just wanted to know that you you hadn't even thought of this and then boom you're hit with this you're by yourself and and having to break the news to your your family um and then dealing with the you know the messages i'm sure you got after um i i want to definitely um talk about that too later on in this conversation just the support that helped the most like throughout this entire um you know situation um i do want to you know shift over now to um the next section the next segment which will be treatment decisions and that will include you know your decision on where to go as well as the genomic testing involved and the treatment so stick around [Music] you