I was diagnosed with stage IV non-small cell lung cancer (NSCLC) in July 2016 following months of an unrelenting cough; visits to urgent care, an ENT, and my primary provider; and finally the E.R. where I underwent a chest CT scan and heard the word “mass” for the first time. A PET scan revealed that the largest tumor was located in my upper right lobe, with metastases to the lymph nodes in my chest as well as my spine, sacrum, and rib. When the pulmonologist said the words, “You have lung cancer,” I passed out right in front of him and awoke while begging him that he must be mistaken since I had never smoked. I quickly learned that anyone with lungs can get lung cancer.
After about 1.5 years on a first line tyrosine-kinase inhibitor (TKI), I had a sudden onset of very concerning symptoms. A brain MRI revealed approximately two dozen lesions throughout my brain, with the largest being in the cerebellum. I was switched to a second line TKI with the hope that this targeted therapy would have better penetration through the blood/brain barrier. This ‘oral chemo’ treatment, paired with brain surgery in the form of outpatient stereotactic body radiation therapy (SBRT), took care of all brain mets! These treatments have been so successful for me that subsequent scans continue to show stability in my disease progression.
In early 2018, I demanded another PET scan to address increasing pain in my right heel. I was convinced at the time that my cancer had spread to my heel bone. While the PET scan didn’t find cancer in my heel, it did find a whopping 8 cm tumor in my right femur that was previously unrecognized since previous PET scans had stopped at the mid-thigh. I underwent two bone biopsies followed by 23 rounds of radiation to those two locations.
Coping with what has been described as a “terminal illness” has been a huge challenge and definitely the most difficult battle I have ever had to face. The first year was very rough, both for myself and also for Randy. I have gotten though it with his support, some pretty amazing friends and neighbors, my therapist, and new friends and acquaintances that I have made along the way. My biggest fears concern my three young sons, and I try to put all of my attention towards them, making meaningful moments out of our daily interactions and activities together. I find it challenging to manage my family, a full-time job in a demanding career in mental health, and my cancer diagnosis, but I am determined to find balance with it all. I find cancer advocacy extremely important and have managed to weave that in among my other demands. It is so meaningful to be able to talk about my story, connect with other survivors and learn from one another.
Connections within the community of lung cancer survivors have led me to the Lungevity Facebook groups and HOPE Summits, the Bonnie Addario living rooms, the Lung Cancer Alliance congressional summits, the Chris Draft Family Foundation and the International Association for the Study of Lung Cancer (IASLC). The highlight of 2018 for me was being chosen for a Patient Advocacy Travel Grant by the IASLC, which allowed me to attend the IASLC 19th World Conference on Lung Cancer in Toronto! The strongest connections I have with other survivors were built through involvement with these groups. We all have valuable information to share regarding our journeys of side effects, progression and the roller coaster of emotions that goes hand in hand with this disease. If it weren’t for these connections, I have no doubt that I would not be able to say today that my cancer is stable.