A Survivor Story: Tori Tomalia
I am Tori, a 38-year-old mother of three, and I have metastatic lung cancer.
If you told me in early 2013 that today I would be a one-and-a-half-year survivor (so far) of stage IV lung cancer, I never would have believed you. The year 2013 began with me as busy as ever, directing a show written by my husband and I, studying in my third year of graduate school, working part time and raising our four-year-old boy and infant twins. I was also battling a nasty cough that kept getting worse.
As winter turned into spring, the show was seen by over 2,000 children, my previous production won an award, I completed my third year of my MFA, maintaining a 4.0, and my twin girls turned two. Also, my cough kept getting worse and I was exhausted. The doctors gave me several prescriptions for my “asthma,” but despite a string of medications, the cough and breathing difficulties continued to get worse and worse. They began to suspect that there was something else going on and sent me for further testing.
On May 29, 2013, I got the horrible, shocking news that the cause of my breathing problems was a large tumor that had wrapped around my left lung. Further testing showed that the cancer had spread to my spine, shoulder, hip, ribs and liver. I had stage IV lung cancer. No, I was not a smoker.
My world collapsed around me. My priorities flipped upside down as the social worker advised that I focus on making memories for my kids. I clung to every moment with my family, carrying the terrible knowledge that any day could be my last. Picnics, bowling and zoo trips were filled with love and tinged with heartache. I struggled through six cycles of chemotherapy, balancing side effects and meds while spending all the time I could enjoying my kiddos. Amazingly, my breathing started improving and the scans confirmed that the chemo was working. But, what next? My cancer wasn’t gone, and I couldn’t stay on this chemo forever.
Thankfully, we are now in the era of personalized medicine, and I am one of the lucky ones benefitting from cutting-edge therapy. A biopsy of my tumor revealed that it carries the ROS1 mutation, which can be controlled with daily pills. I still struggle with side effects, but they are manageable, and my most recent PET scan showed no active cancer.
I have received a stay of execution. For how long is anybody’s guess. One day this pill will stop working, and then I will pursue another treatment, a clinical trial or any options I can find. I got to see my son start first grade and my daughters start preschool. A year ago I didn’t think I would still be here, so who knows what my future will hold. I am aiming to see my kiddos graduate from high school.
I am alive today because of research, and I am counting on continued medical advances to let me see my kids grow up. Lung cancer kills TWICE as many women as breast cancer, but it gets a tiny fraction of the funding and awareness. It breaks my heart to think that the stigma surrounding lung cancer — that it is a “smokers’ disease” so its victims “deserve it” — could be what makes my kids grow up without their mom. Let’s fight this stigma and keep the research coming.
Tori blogs about her lung cancer journey at: lil-lytnin.blogspot.com
