At 45 years old, I had a full-time desk job developing, editing, and publishing real estate continuing education courses. I lived on the west coast of Florida with my husband and our two sons, both in high school at that time. Maintaining a healthy lifestyle, eating a balanced diet, exercising regularly, and avoiding hazards that would jeopardize my health were routine. My annual well visits to the doctor were without incident.
In December of 2014, I began to experience shortness of breath, unusual fatigue, and excessive coughing during tennis matches. As symptoms continued near the end of the second month, I suspected the cause was a stubborn bronchial virus or infection. A change in my health insurance mandated that I visit my general practitioner before going to a specialist. Since my doctor had recently moved away, it was a two month wait for a new patient appointment. At that visit I was told to eliminate possible inflammatory foods from my diet, use an asthma inhaler, and follow up with a pulmonologist for suspected adult onset asthma. It was another five week wait to see the specialist. During that final month before diagnosis, a wheezing sound developed that was audible while I was sitting still at my work desk and the inhaler I was given didn’t help. I called the specialist’s office repeatedly looking for an earlier appointment, but was told that unless I had cancer or was coughing up blood, there was nothing available any sooner. When I asked if I should get a chest x-ray before my office visit, I was told that it would be done during the appointment, so I waited. After all, I was considerably young with no apparent health risks.
On April 30, 2015, five months from the onset of symptoms, a chest x-ray revealed a 3 cm tumor in the lower lobe of my right lung. Over the next 7 days, a CT scan, PET scan, bronchoscopy, and pathology report determined a diagnosis of inoperable, incurable, Stage 3B non-small cell pulmonary adenocarcinoma. Among other tumors, a lymph node at the base of my carina had grown multiple prongs into both the left and right bronchial tubes. At 45 years old, otherwise healthy and physically active with no known environmental or hereditary risks, I had lung cancer.
My treatment of daily concurrent IV chemotherapy and radiation began almost immediately. Despite being pushed by family members and friends to travel to one of the big research institutions, I choose to pursue treatment locally. I did my research and felt 100% confident with my choice of oncologist at Florida Cancer Specialists (FLCS). Factors that led to my decision included my oncologist’s directive to immediately seek a second opinion from a respected physician at a large research hospital and our ability to together compare the second opinion to the plan he proposed. My oncologist collaborated on my case with a local team of specialists as a similar team would have done at a larger institution.
Locally, I felt a connection with my community physicians, endured shorter commutes to their offices, and was able to spend more time with my family. My decision to stay local has been validated each time I reached out with a concern and it was met with swift action. My cancer journey has also included two clinical trials, one at a large research hospital and one at a community research facility. While test results were available 24 hours earlier at the larger facility, I couldn’t help but feel like a number in the herd. It was always a long day of moving from one department to another with too much wait time in between. Each visit was an 8-10 hour day with a long commute and it required a full second day to recover. On the other hand, Florida Cancer Specialists was a convenient drive with little wait time. The close proximity of FLCS and the shorter visits allowed me to add other activities to my day. The administration of treatment and lab results were the same at both facilities, but local facility allowed me the opportunity to live a more normal life, the goal of most cancer patients. Another rock star decision by my oncologist was to test for somatic gene mutations. Occurring in less than 2% of NSCLC, I was ROS1+. This surprising information opened the door to targeted therapy. My current medicine blocks a protein the cancer cells need to grow. While it can’t eliminate the cancer, it can control it to where no tumors are visible or NED, no evidence of disease. Although this is my current status and worthy of celebration, I still contend with daily medicine side effects, fatigue, and restricted breathing from scar tissue and damage in my lungs from both radiation and the original tumor growth. I also live with the knowledge my tumor will eventually mutate and the journey will start over again.
Almost two years later with five year survival rates at less than 5%, I am lucky to be alive. I have enormous gratitude for my doctors: Dr. S. Lunin, the brilliant captain of my journey, Dr. M. Patel, my wonderful clinical trial oncologist, (both of Florida Cancer Specialists), Dr. J. Seaman, the world’s best pulmonologist (Lung Associates of Sarasota) and Dr. L. Silverman, a precision radiation oncologist (21st Century Oncology). I am thankful for their support staff, the researchers who developed my miracle medicine, my friends and family, and my cousin Nikki who shared her insight and guided me during the first crucial months. My life has changed post diagnosis. Where family and friends have and will always be a priority, now I also focus on my physical health and choosing to be happy in each moment. I think I undervalued the small moments before and those are the ones that really make a difference. Sometimes I just stop what I’m doing, look around me, and breathe.