Stephanie Cole: She's a 1der
My lung cancer story does not have the typical lung cancer symptoms of cough or shortness of breath. Weeks before my diagnosis I began having neurological issues; difficulty with writing and typing. Then came the terrible headaches and head pressure. It felt like I had a severe sinus infection, but without the cough and runny nose. About a week later, I could not walk straight. I knew at that time something was seriously wrong with me. I made an appointment with my primary and she immediately did an x-ray thinking I may have a pinched nerve. The x-ray did show in fact I had degenerative disc disease in my neck. However, my primary was concerned there maybe more issues and ordered a brain MRI. Right after I had my MRI, the Tech told me that the Radiologist wanted to see me. I went in the little room where he was reading images and jokingly asked if my MRI lit up like a Christmas tree. Well, it did! Lots of brain metastasis. Not at all what anyone was expecting. The doctors figured it was most likely stage IV breast or melanoma. After my CT, the shock to everyone, was that it was lung cancer. I had a small tumor in my right lung with metastasis in my right mediastinal lymph nodes. My diagnosis was November 14, 2017. I was 45, healthy and a non- smoker. My thoracic oncologist waited after two biopsies (they didn’t get enough the first time) to start treatment, because she just knew I had a gene mutation. Well, she was right; ROS1+. I started on Crizotinib and struggled in the beginning with side effects. I had a few “treatment holidays” and eventually was reduced to the lowest dose. After a year, I progressed in the brain and had Gamma Knife again to blast the metastasis away. A couple of months after that, I developed more brain mets. Evidently, my brain is fertile ground for this cancer. I then decided it was time to change treatment to Lorlatinib. I experienced lots of side effects on the full dose. I was reduced to the lowest dose, yet again, and I have been truly blessed to remain stable for over 2 years.
Since being diagnosed, I decided to live whatever life I have and be a full-time mother to my 3 beautiful children. I went out on disability from my job as a Human Resources Manager. I was making mistakes at work and knew I could no longer keep up with the demands of the job. I loved my career, and it was difficult to leave the place where I am still a patient today, Medical University of South Carolina.
My husband and I, along with our kids, are very active and love the outdoors. We embrace nature and enjoy hiking, running, camping, and kayaking. I believe being active is extremely important and is such a benefit with the physical and emotional effects of having cancer. After losing my mother, who had lung cancer as well, this past fall, I try hard to focus on the present and make as many memories as possible. I remind myself that tomorrow is never promised and to enjoy the gift of life.