In May 2018, I was a mother of 29 at the beginning of the third trimester of my second pregnancy. A few years earlier, I was diagnosed with Crohn’s disease, a chronic inflammatory bowel disease that can cause unintentional weight loss. So, when I stopped gaining weight as quickly as when I was first pregnant, my doctor and I realized that this was the easiest explanation.
But a few months later, in mid-August 2018, I woke up with severe chest pain. I couldn’t breathe or move without excruciating pain. My husband had already left for work, so I took our 2 year old daughter to school and Google my symptoms. I called my obstetrician and primary care doctor, and they told me the same thing: Go to the emergency room immediately.
After a chest X-ray, the doctor came and told me that I had a calcified granuloma – a small patch of normally benign (non-cancerous) inflammation, usually caused by infection – on the bottom of my left lung. In most cases, they do not cause symptoms. Everything else was clear, so the doctor diagnosed me with lung pain from pregnancy and sent me away. Basically, he believed that my chest pain was a normal response to the pressure of carrying a growing baby.
In October 2018, I gave birth to a healthy baby girl. A month later, my husband bought me a Peloton bike and I jumped as soon as I was allowed to exercise again. For three months, I cycled almost every day and then fell off a bit when I went back to work in February 2019.
In April, I decided it was time to get back into shape, but I tried hard the first time.
During my lunch break, I jumped on my Peloton for a 15-minute walk, just a kind of exercise. But it was very, very difficult. As a former college basketball player at a Division 1 school, I have never had such a hard time exercising. I thought, Oh my God, I’ve never been so out of shape in my life!
That night, I was getting ready for bed and brushing my teeth when coughed up blood.
It was a light pinkish-red color. I looked at my husband and said, “Oh, shit.” The next morning, the same thing happened. I called my doctor and went to make an appointment. She heard my lungs and, surprisingly, said they looked good. I had a little breathlessness, but she couldn’t hear anything. She realized that I probably had an infection like bronchitis, and my lungs were inflamed. She prescribed an antibiotic and told me to come back if I still had symptoms in ten days.
In about three days, I stopped coughing up blood and, while my cough didn’t go away completely, it was also not a hassle for the whole day. I thought about going back to the doctor, but I still had an appointment for the next week, so I postponed it a little. Retrospective is 20/20, but it was Derby Week (a big business where I lived in Louisville, Kentucky), and I wanted to enjoy my weekend. Then I pushed by it.
But then I started coughing up blood again. Not to be too thick, but the consistency has changed. It started light pink, not much. Now, it was a brighter red color and I was cough gobs that were roughly the size of two quarters. This sucks, I thought. I think I just need stronger antibiotics?
On Monday morning, I went to see my PCP again and she was quite perplexed. I mentioned that I was also losing more weight than I expected. I was in the postpartum period – so some weight loss I was normal – but I seemed to be losing weight faster than after my first pregnancy.
After a series of exams and CT scans, they finally referred me to a pulmonologist, who underwent a bronchoscopy to examine my lungs and collect samples. For the first time, I worried if I could really get lung cancer. I had a feeling it was bad.
The following Monday, I received the call: did have lung cancer.
I remember the doctor said that I needed to sit down. He said he was sorry to do this over the phone, but we had to start finding out as soon as possible to cure my cancer. I texted my husband. I got the doctor to call him to give the details. Besides, I hardly remember anything. I think I blacked out.
After a series of tests, scans and a second opinion, I was diagnosed with stage IV lung cancer that has spread to my liver and my bones. I had three points on the spine, rib cage and pelvis.
When the doctor broke the news, he was visibly shaking and upset. To anyone outside that room, I looked like a healthy 30-year-old. Like most people, when I heard “lung cancer”, I thought about smoking. I had never smoked a cigarette a day in my life. I do not to feel like the typical patient with metastatic lung cancer. I was numb.
I had developed lung cancer, despite not having any of the typical risk factors.
My oncologist suggested that I obtain a comprehensive genomic profile (CGP) to help identify what genetic mutations I had, so that my doctors could better plan my treatment. About three weeks after my diagnosis, my test results showed that I had ALK-positive lung cancer (anaplastic lymphoma kinase positive, or ALK +). Of all patients with non-small cell lung cancer (the most common form), only about one in 25 are ALK-positive. ALK-positive lung cancer patients tend to be like me –younger people who has I never smoked.
The ALK mutation causes lung cells to grow abnormally like cancer cells and, over time, can also spread to other parts of the body. Compared to other mutations that cause cancer to grow, ALK is generally more treatable and tends to respond very well to targeted therapy, such as taking a pill that blocks the action of this mutation to stop the spread of cancer cells. This overcame the alternative we were considering: traditional chemotherapy.
Although I had no idea what ALK-positive meant before that meeting, I found that it was, literally, the first good news we received since my diagnosis. My doctor explained that there was a pill that I could take and predicted that it could work for years. This was really great news – a silver lining. For the first time, we had hope. I started taking the targeted therapy medication immediately and continue to take it today.
Within a few days, my lungs started to clear and I stopped coughing.
In July 2019, a few months after my diagnosis, I had an exam that showed no evidence of illness. In the spring of 2020, my cancer came back, but after chemotherapy there was no more evidence of the disease in December 2020.
Today, I continue to take pills for targeted therapy, but otherwise I am back to a normal life. When you look at me, you probably see a healthy mother of two, 31, who may just be a little tired because, well, she has two kids that keep her busy.
I want the girls to understand how important it is to be your own advocate and take your health seriously – because I didn’t.
I didn’t think cancer could happen to me at 29. Although I knew it didn’t make sense for a 15-minute bike ride to be so difficult, I could never imagine that I had lung cancer.
As young, healthy women, we often ignore strange symptoms and are repelled by doctors. But if you think something is wrong or realize that your fitness level is not where it should be, it doesn’t hurt to take a look and follow up until you find out what’s going on. Keep pressing for the answers and treatment you need.
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