Krista S., SC

In December 2020, I developed a lingering cough. Some days it seemed to improve, so I didn’t get it checked out. It continued into January, when I developed a raspy voice for no apparent reason. I didn’t feel sick, and it came on so suddenly that I thought it was strange. But since we were all wearing masks due to COVID-19, I blamed that for why no one could understand what I was saying.

I even got a new phone, thinking it was the problem—never once thinking something was wrong with me. I continued working full time as a school-based occupational therapist, while also being a mom to my two preteen girls and a wife to my husband.

After about a month of having a raspy voice, I made an appointment with an ear, nose and throat specialist. I had to wait to be seen because I was a new patient. By the time the appointment came, my voice had started to improve—I almost didn’t go. But I went, and the doctor diagnosed me with a partially paralyzed left vocal cord. He ordered speech therapy and CT scans of my head, neck and chest—just as a precaution, he said.

I remember telling that exact thing to my husband on the phone: “Just a precaution.”

Four days later, I was back in the ENT’s office, and I had appointments scheduled with an oncologist and pulmonologist for the next day. My scans had come back showing "uncontrolled metastatic disease"—too many tumors to count in my lungs.

Fortunately, my oncologist suspected a genetic mutation. A month later, I was diagnosed with ALK-positive lung cancer at age 50, with no history of smoking. It was the last thing I ever expected. I had kept up with all of my cancer screenings—mammograms, colonoscopies and more.

I’m on a targeted therapy that, so far, has kept my cancer from progressing. But having a cancer driven by a mutation at such a basic level—two genes fusing together—and being dependent on a medication that hasn’t even been available for 10 years is nerve-wracking, to say the least.

I live from scan to scan, hoping for the best each time. I get repeat PET scans and brain MRIs every three to five months, since there is no blood marker for my cancer. But I know that at any time, my medication could stop working. The cancer could outsmart the drugs, begin growing again, or re-mutate. It’s always in the back of my mind. It never goes away.

I’m reminded of it every time I look at myself, having gained more than 50 pounds in four years. I’m reminded with every step I take, dealing with daily muscle aches and pains—another side effect of the medication.

But I continue to work and try to keep life as normal as possible for my family.