By Gina Hollenbeck, as told to Stephanie Watson
In 2015, I was a labor and delivery nurse and clinical director of a free prenatal care clinic in Memphis, Tennessee. I was 38 years old and in peak physical condition. I ate healthfully, ran half-marathons, and played tennis competitively. I’ve never smoked or even been exposed to secondhand smoke.
Because I was a nurse, I paid attention to what was going on in my body, and I knew something wasn’t right. I had a cough that just wouldn’t go away. Because this was in June, my doctor assured me that it was nothing more than seasonal allergies and sent me home with allergy medicine.
Then I started to have pain behind my left shoulder blade. An orthopedic doctor found nothing wrong with my shoulder and prescribed a muscle relaxer.
Still worried, I went to an ear-nose-throat (ENT) specialist. He passed a scope down my throat and told me I had gastric reflux. Yet I had this nagging feeling that something was very wrong with me. I begged my doctor’s office to do a chest x-ray. They said I didn’t need it.
Finally, I asked my friend who worked at a local imaging center to do the x-ray, which I paid for out of pocket. The image revealed a huge shadow on my left lung. At first, the doctors assumed it was a bacterial or fungal infection because I was so young and healthy.
After a biopsy and MRI, I finally learned the cause of my symptoms – non-small cell lung cancer (NSCLC). The cancer was wrapped around my windpipe and it had spread to my brain. In other words, it was incurable. As I sat in the doctor’s office, the weight of my diagnosis overwhelmed me. My two little boys were just eight and 12 years old.
When I found out I had stage four cancer, I knew I was going to fight it with everything I had, and I knew it was going to be ugly. In January 2016, I had craniotomy surgery to remove the large tumor in my brain. That was relatively easy, but the radiation therapy that followed kicked my butt. I was so exhausted.
I have a rare type of NSCLC with an ALK fusion. That means part of a gene called anaplastic lymphoma kinase (ALK) is broken and attached to another gene. I was fortunate in that there are targeted treatments available for this cancer type, and the therapy I received melted away my cancer. Then I had surgery to remove the left upper lobe of my left lung to prevent a recurrence.
So far, so good. But late-stage NSCLC has a habit of coming back. Seven months later, the cancer had returned to my brain. I went on a different targeted therapy. That worked for about three years, but then the cancer reemerged around my heart and pancreas. This was last March. One week I was running and doing bootcamp classes, and the next week I couldn’t walk up the stairs. I was pretty sure I was going to die.
I’m president of the nonprofit organization, ALK Positive, and a member of its support group, which has more than 2,000 members. I’ve seen a lot of people die after the treatment I’d just failed on. Fortunately, my doctor genetically sequenced my tumor, and the one remaining targeted therapy was a perfect match. The drug cleared up my cancer.
On Memorial Day of this year, I started to feel dizzy. I went for an MRI, which showed a few spots on my brain. My cancer is back. I don’t know what the plan is from here, because I’m out of targeted therapies.
My experience has made me a lung cancer screening advocate. I’m just one of many people who are diagnosed at a late stage without any smoking history. If I’d had early screening, my cancer would have been caught much sooner, when it was still curable.
I’m going to keep advocating and helping others with this cancer until the day I die. I love spreading hope and lifting people up to help them get through this incredibly scary journey. Regardless of what happens to me in the future, I know I’m going to win.