It's a busy life! As an OB/GYN working full time (deliveries, operating room, office hours, etc) with four other physician partners and staff, a single mom of two teens and maintaining and renovating my 3500 sq ft home on two acres of property, the diagnosis of non-small cell adenocarcinoma of the lung hit me like a brick wall! Furthermore, it was at stage IV when diagnosed! How could this happen to me? I never smoked! I always lived a healthy lifestyle with nutritious food, an exercise routine and was not even exposed secondhand smoke.
I received the diagnosis only been two weeks after running a 5K, albeit I had a cold during the 5K which really interfered with my timing, but I did finish it. It was the persistent cough after the cold that caught my attention. After 10 days, I contacted my pulmonologist asking for some inhalers as I thought it was post-viral bronchitis. He agreed but pointed out that I had not had a CXR in 18 months, having missed my annual CXR in March 2016. We were following an area of atelectasis that persisted after a near fatal bicycle accident in August of 2013. I was too entrenched in my busy life and couldn't believe I had missed my annual CXR. That is so unlike me!
After the genetic mutation in the 800cc of fluid taken out of my right lung was identified (with results arriving after a painstaking two weeks), I embarked on the recommended course of treatment with targeted therapy, oral medication which would function by blocking the mutation and therefore, prevent the continued growth of the tumor. My testing six weeks later showed the lung infiltrate and underlying tumor, the brain lesions (four total), and the spinal lesions had all decreased in size! We were off to a great start! Side effects from the medication (cracking, dry skin which caused deep, burning slits and took forever to heal, decreased appetite, diarrhea, etc.), although bothersome, were tolerable. I continued to work with some accomodations, like being sheltered by my colleagues from the oncall office so I wasn't running around between Labor & Delivery, the Emergency Room, the Operating Room and the office.
I settled into a routine of taking my medication at 3 p.m. by using an alarm on my smartphone as it needed to be taken at least two hours after lunch or one hour before dinner. The first six months went fairly well, until I started getting the headaches. It was a known side effect but it was miserable! I had had regular two or three month imaging and nothing new was found. So after going to physical therapy, seeing a neurologist and being diagnosed with occipital neuralgia, I was becoming increasingly concerned.
By this time it was October, the nausea and decrease in appetite became scary. I couldn't eat, even when I knew I had to. New symptoms started, like my gait felt "off," like I was about to stumble when walking. That was followed by confusion which impaired my ability to make decisions. I was at a loss. After calling the oncologist's office, I was seen promptly and yet another brain MRI was ordered, just six weeks after the last one. Leptomeninges was the diagnosis. My stage IV NSCAC had progressed!
From that point, I was just too symptomatic to work. I couldn't tolerate much noise, my head felt heavy and nothing made sense. Steroids, a change in targeted therapy and proton therapy finally took effect but it took months to feel better. I've been on medical disability since November 2017, retiring in November 2018. It was the most difficult decision to make. Being an OB/GYN identified who I was, doing what I was meant to do. I spent 24 years creating relationships with patients, some of which became my friends. But I also knew I couldn't be confidant with my abilities. I would never risk doing any delivery or procedure on anyone unless I knew I was 110%.
Nine months following my retirement, I had a symptomatic progression with re-accumulation of fluid in the right lung and new lesions on my left lung. There were no additional oral options, so following a pleurocentesis to relieve the symptoms, sending the fluid again for any new genetic markers, and no new mutation identified. Chemotherapy was started. I'll be starting my sixth ( and hopefully last!) cycle. These days I spend a lot of time reflecting on what I could have done differently, how I could have avoided lung cancer? My thoughts then wander to my children, now 17 and 20. As this disease continues to consume my body, how much time do I have left to be with my children, or my family and the many friends locally and the ones I've maintained contact with from childhood, high school, college medical school and residency?
I can't believe this is my end. I have so much more to do, and I don't only mean with others, but FOR others. The recent start of chemotherapy and the approaching month of November motivated me to "make some noise!" November, Lung Cancer Awareness month, was my "Living With Hope" fundraiser to bring awareness to all that you need not have smoked to get lung cancer, that lung cancer is the #1 cancer death, more than the combined annual deaths from breast, prostate and colon cancers. In addition, knowing that radon is the #1 cause of lung cancer in non-smoking individuals, making people aware of the need to reassess their mitigation system on an annual basis.
I also want to make people aware of the discrepancy in funding between lung cancer and these other cancers. Knowing there is a stigma with lung cancer, not to mention low survivability for advocates to sustain a voice, I needed to make some noise and to be heard. Boy did I! I'm proud to say that my LWH fundraiser generated over $15K with bracelet purchases, retail events and the amazingly generous individuals and families in my community. More importantly, I was able to open some eyes and dismiss some of the stigmas associated with lung cancer. I'VE BEEN HEARD AND WILL CONTINUE TO BE HEARD!
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