Before my diagnosis, I was sophomore at Pennsylvania State University studying kinesiology. I was in a new relationship with an amazing guy, playing intramural basketball, and raising money to fight childhood cancer when I had time away from my hectic class schedule. Then one day, I sneezed, and for some reason, the sneeze was so forceful that I pulled a muscle in my back. It seemed so random, and I tried to brush it off, but the pain didn’t go away. I went to the campus doctor to get a muscle relaxer for my back.
The doctors decided to do an X-ray of my lungs, just to be safe, to make sure there were no cracks from when I sneezed. Instead, they found a large tumour on the upper right lobe of my lung.
“What? Why? How?” I asked. I had never smoked a day in my life, and I wasn’t even having any symptoms. In fact, before the pulled muscle, I felt great. I couldn’t believe this was actually happening, and there was so much more I had to find out.
Within a few days, I had a bronchoscopy and a PET scan, which showed that my tumour was cancerous. I was referred to Penn State Hershey Cancer Institute, and I met the doctors there that would become like family for what I didn’t know would be several years.
It was there that I learned that I had stage II non-small cell lung cancer. Translation: There were malignant cancer cells in my lung tissue. The doctors did tumour biopsies and sent them away to test for special genetic markers and abnormalities with my cancer. They found that my cancer was caused by a rare condition called the anaplastic lymphoma kinase (ALK) gene mutation. If that first doctor at the student health centre didn’t do that X-ray and see the tumour, it could have spread to my other organs before I found out about it. That could have been fatal.
Less than a month after I found out about the tumour, I was on the operating table. To get rid of my aggressive tumour, surgeons had to remove it, and they took a part of my lung with it. I had an upper right lobectomy, which was a surgery that removed the upper right portion of my lung.
When I woke up after surgery, the tumour was gone. The surgery was a success, but it left me with shortness of breath and decreased lung capacity, the effects of which I’m still feeling five years later. I still had cancer cells in my lungs that needed to be treated with four rounds of intravenous chemotherapy, plus radiation for nine weeks, five days a week. A part of my lung was gone, but my fight with this disease was only beginning.
There were days where I couldn’t get out bed. I couldn’t do anything to help me feel more like myself, and I couldn’t get past how unfair this all seemed. Before all of this, I was the picture of health, and the fact that I had lung cancer, after never having smoked a single cigarette, was at times almost too much to handle. I was always tired from the chemo and radiation, and I had no appetite. I lost 14kgs, which took a huge toll on my 5' 1" frame.
On top of that, I had to leave college, and I grew apart from friends who, I now realize, didn’t have the maturity to deal with my sickness. They didn’t know how to be there for me when something so terrible was happening, so they faded away.
I was lucky to have a family that was always there for me. The disease took a toll on them, too. I’m the oldest, my parents’ first baby, and they were hurting right alongside me. My boyfriend was my saving grace in all of it—I can honestly say I don’t think I would have made it through without him. He was at every appointment that he could be at, and he knew my symptoms, my treatment plans, and my emotional state just as much or more than I did. With my support system by my side, I made it through all of the gruelling treatment and, finally, into remission.
I could finally breathe again knowing that I had beat cancer. Of course, I knew there was always the chance it could come back, but I didn’t think I had to worry about that. The tumour was gone, the cancer cells were gone, and I was ready to get back to my life.
So that’s just what I did. My boyfriend proposed to me and we got married. I got back to working out and training to improve my lung functioning. We travelled around the country for golf tournaments (he’s a professional golfer), and we moved around until we started to make a home in Scottsdale, Arizona. But before we could get comfortable, I went back to Pennsylvania for a routine scan. Three years after I went into remission, the cancer was back—and this time it wasn’t just in my lungs. It had spread to my brain and my spine, too.
When I called my husband to tell him, he got in the car and drove 36 hours to be with me. My team of cancer doctors, who had been with me since my first round of chemotherapy, sat and cried with me. This time, it would be even harder to get rid of the cancer and even more physically and emotionally draining. It wasn’t just one tumour and remaining cancer cells, it was several pea-sized tumours in my lungs and other tumours in my spine and brain. It’s fairly common for lung cancer to metastasize, or spread, to the brain, but I never thought it could happen to me.
The next few months included three sessions of high-power radiation for my spinal tumour, radiation therapy on my brain with a laser, and after my brain tumour gave me seizures and hindered my ability to form sentences, brain surgery to remove the tumour. The surgeons woke me up during surgery while they were still inside my brain to make sure everything was going smoothly. It was a success—the tumour was removed, and I’ve been able to speak with no problems since then.
My lung cancer, though, isn’t gone yet. Two times a day, I take an immunotherapy pill specifically for lung cancers caused by the ALK mutation. I call it “oral chemo,” and though it makes me nauseous and fatigued, it helps my body fight the cancer. At any point, I could stop responding to the medication, and I’ll have to switch to a different immunotherapy until my body stops responding to that one, and so on. I’ve been on my current medication for 15 months now, which is great. In a sense, I’m lucky. I know people who have stopped responding to immunotherapies after just a few weeks.
Throughout all of this, I’ve tried to stay positive. I know how important positivity is, but I also let myself have moments of sadness. I let myself cry, I let myself fear, and I let myself just say “this sucks.” I’ll remember a lot of great memories of my early twenties, but I’ll also remember the pain, the exhaustion, and the “scanxiety” I get every time I have to get a scan. I’ll remember my doctors telling me it’s probably too risky for me to ever carry a child, even though my husband and I desperately want to be parents.
It’s been five years since my diagnosis, and I’ve learned so much since that first X-ray. I’ve learned how important it is to have a support system like I do in in my husband, my family, and my team of doctors. I’ve learned that lung cancer can affect anyone, not just smokers, although the first question almost everyone asks about my diagnosis is if I've smoked. I've learned that no one, smoker or non-smoker, deserves this cancer, which is why I'm working to end the disease with the American Lung Association’s LUNG FORCE initiative.
And I’ve learned how strong I am. Strong enough to beat a spinal tumour and a brain tumour, and I know that I’ll come out of this stronger than my lung cancer, too.
As told to Carly Breit. This article originally appeared on Women’s Health US.