It has been ten years since my life changed forever.

In September of 2014, I was a young mother of a 1 year old. I went in for a routine eye exam and the eye doctor discovered a spot on my eye she wanted me to have checked out. The next day, she send me to a retina specialist who told me the spot was a tumor. He send me to an ocular oncologist who ordered a chest CT scan, a mammogram, a brain MRI and a PET (positron emission tomography) scan. The scans show a tumor in my lower left lung and in the lymph nodes in my lungs along with a couple spots on my bones that lit up on the PET scan. On Christmas Eve, I got the phone call saying I needed surgery to remove the tumor in my lung. The surgury confirmed by biggest fear: cancer. How could I have Stage IV lung cancer? I was 31 years old. I was a former member of my college track team, and I had NEVER smoked anything—never even tried anything.

I was referred to the best oncologist in the area for lung cancer, and she was just as shocked as I was. She KNEW I must have a gene mutation that was driving my cancer. The only question was, which mutation? She ordered tests on my tumor for the most common mutations; they all came back negative. While we were waiting for further test results, we decided to start chemo to start fighting the cancer. I went through 3 rounds, during which time I lost all of my hair. I continued my full-time career as a high school math teacher and continued to coach our varsity track team. My doctor ordered the next test, which finally showed some results, promising for a mutation. After one more test, it was finally confirmed, I had a mutation: the ROS1 gene mutation. A first for my oncologist.

Fortunately, ROS1 is a mutation that can be treated with medication. At the time of my diagnosis, there was one medication available. I took one pill twice a day to keep my cancer at bay. I was able to stay on the first medication from March 2015 to March 2017. It was great, I didn’t have any side effects and most importantly, I felt healthy! The only drawback was I had been told the medication would definitely fail at some point, but we didn’t know when. It is hard living with that fear and not knowing what’s next.

On Valentine’s Day, 2017, my brain MRI showed more than a dozen small tumors. In a cruel twist of fate, my cousin, another athletic non-smoker, was diagnosed at age 44 with lung cancer around that same time. She has a different gene mutation than I do and is currently doing well with her treatment options. The best option for me was to switch medications and the one I needed was only available thorugh a clinical trial in Boston, Massachusetts.

I have been traveling from Garner, North Carolina to Boston ever since 2017. I was on the first clinical trial drug in Boston from March 2017 to August 2021, at which time several new bone metastasis showed up on my scans, which meant this line of treatment was no longer working. I was able to stay on that first medication for so long because it was it was working in my lungs. During that time, I underwent 10 rounds of radiation ot my hip bones, 10 rounds to my femur, 5 rounds to my tibia and 2 rounds to a new brain tumor. The next clinical trial drug only lasted 1 year. It was not very effective for me as further metastasis formed in my bones.

In August of 2022, I switched to the clinical trial I am currently on. This was a first for me…a Phase 1 trial. This new medication, which didn’t even have a name yet (only numbers and letters), was showing great promise for ROS1 positive lung cancer. For this trial, I had to travel to Boston every other Monday from the beginning of August through the end of October. After that, it was every 4 weeks, then every 8 weeks and now every 12 weeks.

I am very good at writing sub plans for all the days I have to take off from teaching!

Although traveling so often is touch, I would do anything to have more time with my loved ones. At the beginning, I was worried I would not see my little girl make it to kindergarten. Now, I am watching her from the sidelines as she plays middle school soccer.

I am blessed to be alive, to be able to travel to an amazing doctor over 700 miles away and to have the Lung Cancer Initiative—an organization that gave me hope all those years ago through survivor gatherings.

My hope is that science and research will continue to stay one or two steps ahead of me so I have something new to try when this round of treatment fails and that one day, a cure will be found.