A Life of Advocacy
Throughout my life, I have had to learn how to become my own advocate. I was diagnosed with more health conditions within my first few months of life than some have in a lifetime.
You see, I was born with a heart murmur, diagnosed with a benign sacral teratoma at 4 months, and then just 3 months later, was diagnosed with a yolk sac tumor. I spent my first New Year’s Eve under the bright surgery lights while my parents waited anxiously to see if I would even pull through the surgery.
Though this sounds like a lot for one person to go through, this was just the beginning of my health journey. The hardest part of having a chronic health condition as a child was that doctors would not take me seriously. They would make me feel as if I was too young to describe my symptoms adequately or that I was making them up or exaggerating about their severity. Luckily, my mom knew when I was sick, and she’d help me advocate for myself. She’s the one who taught me to speak up when I knew there was something wrong.
I remember telling my cardiologist that something wasn’t right after my first open-heart surgery in high school. Their response was, “you have to give your body time to heal.” It turned out that they were wrong, and I was right. I was scheduled for my second open heart surgery before I even celebrated the year anniversary of the first surgery.
Years later, when I was under the care of an adult cardiologist, I kept telling them that I was very short of breath and was tired all of the time. They told me it was because I was out of shape and needed to exercise more. However, when I went to my yearly checkup, the doctor said, “Oh Shit! You need surgery!”
Yet again, another doctor didn’t take my symptoms seriously. I was getting really tired of saying, “I told you so.” Isn’t that something a mother is supposed to tell their child? Not a patient to their doctor?
Advocating is Exhausting but Necessary
Over the years, I’ve learned how to advocate for my health. To be honest, though, it can be exhausting. It’s like a bad dream that never ends. I can’t even remember the number of times I have been dismissed. I have heard the same thing from other young adults and women. I’ve been made to feel like a hypochondriac. It’s tough because you begin to self-doubt after advocating so hard and for so long for so many different things. You begin to think, “am I just over exaggerating my symptoms?” However, time and time again, I’ve been right. Oh, how I wish I weren’t right.
In March of 2020, I started having chest pain and shortness of breath accompanied by low-grade temps. Of course, this happened to be when the COVID-19 pandemic hit the US. I felt like everyone thought I was being paranoid and making things up. I knew something wasn’t right, however, so I kept pushing. I was terrified of getting COVID-19, though, so I basically self-quarantined myself in my apartment to avoid getting the new deadly virus. I didn’t want to go into the hospital because I didn’t want to be potentially exposed to the virus.
Two months later, my symptoms were getting worse so I figured it was time to seek medical treatment. At that time, I thought I had pneumonia again. My doctor had me stop by radiology before my appointment to get an X-ray. According to the radiologist, my X-ray looked stable, and I was fine. However, when my doctor listened to my lungs, she could hear expiratory wheezes and could tell that I was not fine. She ordered a CT of my lungs and told me she’d call me with the results. Before I even reached my car in the parking lot, she called. My CT scan showed that I had ground-glass opacities in my right lung, and they were concerned it could be COVID-19.
So, the new journey began.
After testing negative for COVID-19, the journey to discovering what was causing my symptoms began. The following year consisted of way too many doctor’s appointments and tests. I was exhausted all the time, constantly short of breath, and it hurt to breathe. I was only 34 and shouldn’t be struggling to breathe.
I remember feeling hopeful initially, though, as they scheduled me to have a bronchoscopy right away. Looking back, they moved too fast, though. I tried advocating to wait a couple of days so I could come off my blood thinners and do the lovenox shots instead, so that way if they wanted to do a biopsy when they were doing the procedure they would have that option, but they said they didn’t think they’d need to do a biopsy. When I woke up after the procedure though, they said, “Well, if you weren’t on blood thinners, we would have done a biopsy.”
Just Say You Aren’t Listening
ARE YOU KIDDING ME?!?! I know I’m not a doctor, but why doesn’t anyone ever listen to me?!
No concrete results. Lucky me.
Since the pulmonologist I had been seeing prior had retired, they scheduled me to see the pulmonologist who was on rotation in the pulmonary clinic. Every time I’d go in, I’d see someone new. I was getting so frustrated because I’d have to go over my entire health history every appointment with the new resident, and, let’s be honest, it’s impossible to cover my complete health history in 5 minutes. I felt like I was getting nowhere and was just wasting my time. All I wanted to do was sleep, but I had so many appointments while also trying to make up for the missed time at my full-time job. This was wearing me out fast.
After pulmonology ran all the tests for what they thought could potentially be causing the ground glass opacities in my lungs, they then referred me to Infectious Disease(ID). The ID Clinic was set up the same way where I’d see whoever was on rotation. The one benefit to seeing multiple residents and doctors though was that they all had different ideas of what could be the culprit. They tested me for what seemed like everything under the sun, but still no answers. I will say though, the lack of getting a diagnosis wasn’t from the lack of testing. They just were testing for the wrong thing.
The Breaking Point
At this point, I was pulling at straws. The pulmonologist who happened to be on rotation next primarily treated Cystic Fibrosis (CF) patients, so I asked to be tested for CF. I knew the chances were extremely unlikely, but I felt like it was too sticky for me to get anything up when I would try and cough. Later we discovered this was because my lung cancer has mucinous features. Crazy, huh?! I know my body pretty dang well, thank you very much!
Next, they decided to refer me to see a rheumatologist. For those of you who have not had to deal with the healthcare world, it can take months to get in to see different specialists. They told me I wouldn’t get in until 3 months later. Didn’t they know that I had been trying to get answers for 8 months already?
So, what did I do? I advocated for myself yet again. I would call every so often to see if they had any cancellations, and one day I got lucky. They had an opening the next day, and it happened to be with the doctor that specializes in lung autoimmune diseases. I remember feeling so hopeful that I might FINALLY get the answers I was so desperately seeking. But, the same thing happened. They tested me for anything and everything they could think of – and all of the tests came back negative. I mean, don’t get me wrong, I was so happy to hear I didn’t have some of these terrible autoimmune diseases they were testing me for, but I knew there was something wrong, and we couldn’t figure out what it was.
I Wish They Had Just Listened
After 8 months of no answers, I begged my pulmonologist. What else could be done?!. I needed answers. He wanted to do a CT-guided needle biopsy on the 2 spots on my lungs, as he thought there was a small chance I could have adenocarcinoma – a type of lung cancer. He put in the referral, but the radiologist who would do the procedure pushed back, saying it was too risky. They feared it would likely cause a collapsed lung. So, they decided to go with another bronchoscopy with a biopsy instead.
WHY didn’t I advocate harder back then for the CT-guided biopsies?! We would have had answers sooner if the pulmonologist or I had advocated harder for the CT-guided needle biopsies all those months ago! I went through another bronchoscopy, and, you guessed it, everything came back negative once again.
At this time, I decided to take a break over the holidays. I needed time to recoup from the constant go of appointments and work. I also needed to get my courage up to change care.
I finally asked my primary to help me find a different pulmonologist for a second opinion. I hated this. I felt like I was cheating on my doctor, but I knew something wasn’t right in my heart. I needed answers and wasn’t getting any, so I needed a fresh set of eyes.
In January, I met with the new pulmonologist. He agreed with my first pulmonologist that the risks outweigh the rewards, and he recommended we do the CT-guided needle biopsies. So that’s what we did.
And that, my friends, is when I finally got the answers that I had so desperately been searching for almost an entire year before.
On February 12, 2021, I was diagnosed with Lung Adenocarcinoma with mucinous features. I had two tumors, one in the upper lobe and one in the lower lobe of my right lung. They weren’t sure if they were both primary tumors, which in my opinion was unlikely, or if the upper tumor had spread from the lower tumor.
As I look back on my year-long journey, it is exhausting just thinking about it. I had to fight so hard!! If I had taken the results of the non-cancerous biopsy from my bronchoscopy in November as truth, my life would probably look very different. In the lung cancer community, your chances of survival are much more promising if the cancer is caught early. If I hadn’t kept pressing for answers, then my cancer could have spread to other parts of my body, and my story would look very different than it does now.
We shouldn’t have to fight so hard for answers!
The moral to my story is you need to get to know your body. Know when something isn’t right. If the test results don’t add up to the symptoms, keep pushing. Sometimes tests aren’t always accurate. In my case, the biopsy they took from the bronchoscopy wasn’t in the right spot of the tumor to get the cancerous cells to give me an accurate diagnosis. Know it’s ok to keep pushing for answers.
Always be your own advocate, because if not you, who?
Rachelle lives in Omaha, NE, and enjoys kayaking, traveling, and being outside in nature. Her cancer journey began as an infant when she was diagnosed with a yolk sac tumor. In 2019 she was diagnosed with a benign meningioma, and after a year of trying to find answers, was diagnosed with adenocarcinoma of the lung with mucinous features in February of 2021. She finished radiation in April of 2021, and is currently NED! You can connect with her on Instagram @RachelleLynn88.
Thank you, Rachelle, for sharing such a valuable lesson with all of us!