It took my doctors 9 months to diagnose me with lung cancer.
It started in August 2018. I was coughing, having trouble breathing, and rapidly losing weight. They tried everything: antibiotics, nebulizers, other medications, but I kept getting worse. I was coughing up blood and heard crackles in my lungs. I was coughing so much, I broke a rib.
My family and I were planning a trip to Cuba for the mid-winter break, and I decided I wouldn’t go on the trip until I got better since I was now coughing up blood. I went to a specialist, who did a bunch of tests. He thought my symptoms were being caused by allergies and recommended I make changes to my household to make it more allergen-free.
The specialist also got me a chest scan. The scan showed white flurries in my lungs. The doctor said it was tuberculous and I needed to go to the hospital right away. They put me in a quarantine ward for 10 days. My kids (who were 4 and 6 at the time) and my husband got tested. We all tested negative for TB.
They started going down the list of possibilities of what else could be causing all these issues. They kept telling me, “If someone saw this, they would think it’s lung cancer. But you don’t fit the criteria, so it’s not that.”
The following months, I continued to get worse, and they continued to provide new diagnoses with each hospital visit: pulmonary sarcoidosis, lipoid pneumonia, but never lung cancer. It wasn’t until I had a pleural effusion and they pulled six liters of fluids from my lungs that they finally diagnosed me with late stage lung cancer. They told me so many times that I didn’t have lung cancer, I couldn’t believe what they were telling me. I wished I could go back to thinking it was TB, sarcoidosis or pneumonia instead of advanced stage lung cancer. I remember writing in my journal the night of my diagnosis: “I don’t want to be one those people who has a short but meaningful life. I want to have a long and meaningful life.”
Looking back, I think there were five things working against me that delayed my diagnosis: I am an ex-pat living in Switzerland, so I speak French with an American accent; I am a woman; I am Black/Haitian-American; I am young; and, most importantly, I was acquiescent. I didn’t question things or push back, just trusted that the doctors had my best interests in mind. Since my diagnosis, I am no longer afraid of offending someone or concerned about sounding like I’m questioning them; I am willing to push back because this is my life, and I have to advocate for myself.
I started a targeted therapy on May 17, 2019. By May 19, I was feeling almost normal. It was like nothing had happened, but I guess I was right at the beginning of my “5 stages of grief” mode. Before, I was on oxygen 24/7. Now, I was up and walking around with no assistance. Everything was much better. I was still devastated by the diagnosis, but if all I had to do was take a pill in the morning and at night, it felt doable. For the first time, I left like I could live with cancer and not die from it.
By December 2019, I was NED (no evidence of disease); all the tumors in my lungs were gone and my tumors in my brain and bones were stable. It was amazing.
In February 2020, we went to Costa Rica as a family. We came home to COVID. For me, not much changed because of the pandemic; the rest of the world, however, got an inside peek at what it’s like to live with cancer. It felt like the year before the pandemic, during which I was facing my lung cancer, I was gearing up and preparing for quarantine, uncertainties, and fears of the unknowns.
Around the beginning of the pandemic, I found a lump on the left side of my back. I told my oncologist, but he wanted to wait until my next scan to check it out. He was worried about the hospitals being overfilled with COVID. However, I pushed back and said I wanted a scan now, and he relented. It was cancerous. They performed radiation in April 2020, and the lump went away. However, a couple of weeks later, I found another lump. They did a biopsy this time and found it wasn’t the same cancer in my lungs, but a rare, large cell cancer.
As it turns out, I am a rarity, a “one percenter” - young, non-smoker diagnosed with two subtypes of lung cancer: non-small cell and large cell neuroendocrine carcinoma. As my doctors say, “Of this already rare thing, you have an even rarer thing.” It’s rare to have lung cancer at 37(1%), it’s rare to have the ROS1 mutation (1% of all non-small cell lung cancers), and it’s rare for my cancer to transform to large cell (>1%).
I always knew that my targeted therapy would eventually stop working as cancer is notorious for "outsmarting" treatment and developing resistance, but I thought I would just go down the list of targeted therapies available. I didn’t ever guess I would have a second type of cancer that couldn’t be treated with pills. This second subtype of cancer, though, requires chemo, and any time I’m not on it, another lump appears. Now, I’m on a maintenance chemo that I will keep doing until a better option is found. I look back to a conversation I had with my cousin/best friend/daughter’s godmother/free therapist - you get it, she holds a lot of space in my life - and she said: “Who would’ve thought that you’d be diagnosed with stage IV lung cancer and in less than a year, the whole world would be experiencing this COVID-19 pandemic?!”
Even though I was disappointed I have to do chemo, I was and am willing to do it. I am throwing everything I can at this disease: chemo, radiation, targeted therapy, acupuncture, massages, dietary changes, energy healing, anything that might help. My thought is if I can just stay one step ahead, I can be an outlier. I can have a lot more years. I can be one of those radical remission people.
To those newly diagnosed, the best advice I can give you is to take it one day at a time. Find time to be with yourself to meditate or pray or just be silent. However, don’t try to be strong or play the “I can do this alone” card. You need all the help you can get, mentally and physically. Find a therapist. Find community. Find people who will understand. Find people who will just listen.
Also, to the newly diagnosed, I say: Welcome to the club that no one wants to join. We’re here, and we are going to make the most of it. Use the days you’re given. A cancer diagnosis will shake your world to its core but one thing remains the same: you’re just as terminal as everyone else. You just have a carrot dangling in front of your face as a daily reminder. Do things you’re afraid to do. You’ve been living life safe the whole time and you still got cancer, so why not live fearlessly?
Related Reading:
- Never Say Never
- Losing My Hair From Cancer Treatment
- The Importance of Community for Lung Cancer Survivors
Angie Brice Hessbruegge is a bona fide expatriate. Born in Haiti, she moved to New York at six, then off to Tufts University in Massachusetts for a BA in International Relations and Spanish, and finally across the Atlantic for her MA in Applied Linguistics and English Language Teaching from Kings College London.
Both Angie and her husband have worked for the United Nations and this resulted in her having lived and taught extensively in Europe, Latin America, and the USA. She has traveled to over 70 countries (pre-pandemic) and speaks five languages.
In May 2019, Angie Brice Hessbruegge’s life would forever be changed when at age 37 and as a non-smoker, doctors diagnosed her with stage 4 lung cancer. Cancer affects not just the afflicted person but their whole family. This is why Angie joined forces with her good friend and fellow ‘cancer mama’ Karlee to create their podcast. Together they are 2 busy moms, with 2 active kids each, living in 2 separate countries and diagnosed with 2 different cancers: lung and breast. Join them on their cancer healing journeys while raising kids in an expat world.
Follow their Instagram: @MommyHadALittleCancer