We Wish

at lung cancer was a disease that would never affect me. Like many others, I believed that only smoker’s developed lung cancer and that I was immune. In May of 2009, I learned how wrong I was. I went to the ER for what would prove to be a pulled muscle in my back. While in the process of determining what the pain was from, the doctors ordered a CT scan that revealed a nodule in my lung. My doctors tried to reassure me that the nodule wasn’t likely to be lung cancer, citing that I was only 49 years old and had never smoked. After having repeat scans over the next 6 weeks that remained unchanged, I had a CT-guided needle biopsy in July. I will never forget the moment when my pulmonologist called me to say that the “nodule” was a malignant tumor. He told me I had non-small cell lung cancer. I was shocked. I immediately started searching the internet for information and, after reading it, I was surprised to learn that up to 80% of the newly diagnosed cases of lung cancer each year are in never or former smokers, and that most people diagnosed at stage IV will only survive 6-8 months beyond diagnosis – both very sobering statistics. I was convinced that I was going to die within the next few months. My daughter was 12 years old and my son was just finishing college. I believed that I would never see her graduate from high school, and never see him get married or start a family. It was 2 days before the 4th of July when we gave them the news. My daughter was young and didn’t truly understand what we were telling her. My son; however, looked as though someone had punched him in the stomach. I was fortunate that the tumor in my lung was the only cancer visible in my body, and my doctors recommended that I have the upper left lobe of my lung surgically resected with a curative intent. After my surgery, no further treatment was needed, because I was staged at 1A, and we all felt confident that I would be among the 70% or so people who would be cured from the surgery. I tested positive for the EGFR mutation, information that was going to be “kept in our pockets” so to speak. Over the next few months while I was recovering, my father became the 4th member of our family to be diagnosed with lung cancer. Dad was 80 years old and diagnosed at Stage IV, with several tumors throughout both lungs. The good news was that he was also EGFR positive and was able to begin Tarceva, a targeted therapy. Over the next few years, every scan that I had showed NED and my doctor was lengthening the intervals between scans, and was starting to use words like “cured” on occasion. It had been almost 3 years since my lung cancer diagnosis and I had never had a recurrence or spread of the original single nodule. However, my father was slowly progressing during that time. In early 2012, it became clear that he would be unable to live alone and would need to move into my home with my family. He joined us in April of that year. It was a difficult time for all of us. It was hard to watch my father go from the strong dad that I had looked up to and leaned on my entire life, to the man that was becoming more and more frail and dependent, and needed me to take care of him. It was difficult to watch him struggle with leaving the home he had built 59 years earlier and lived in with my mom until her death. It was even harder to watch him failing more and more every day. After Dad moved in, I started to have debilitating headaches. I made an appointment to see my doctor’s Physician’s Assistant, and she felt that the headaches were due to anxiety and stress. She prescribed me anti-anxiety medication, but it didn’t work. On July 4th, I had a headache so severe that I literally lay on my couch and cried, unable to move. My husband took me to the ER. The doctor there thought it was probably a migraine, but wanted to do a CT scan to rule out an aneurysm. When he came back into the room, his face was so white and his demeanor had changed so dramatically that we immediately knew that something was terribly wrong. It was then that he gave us the news that I had a brain tumor at the base of my cerebellum that was the size of a golf ball. He had called an ambulance and I was to be transported to Presbyterian Hospital. While we were waiting for the ambulance, I remember sitting with my husband, with the realization hitting us that I was now Stage IV, and wondering how we were going to tell our kids that this time, their mother WAS going to die. Again, I was fortunate. Even though I was Stage IV, the brain met was a solitary met and was able to be removed surgically, followed by CyberKnife. The doctors were no longer talking about “cure” and one of the Fellows told me that I only had a year to live. My neurosurgeon and oncologist assured me that there was no evidence of disease anywhere else in my body, and that I didn’t have an expiration date anywhere on me. While I was recovering from this surgery, my father was failing more and more each day and he passed away in November of 2012. Before his death, we had several conversations about end of life issues, and many conversations about what our family could do to be sure that my brothers and sister, niece and nephews, and more importantly to me, my children, would not die from this disease. I knew that I had to become an advocate and speak out, so my family founded We Wish, a non-profit organization dedicated to funding lung cancer research and patient education. As you’ve read, July 4th has not always been a celebration for my family, but this past July 4th marked 5 years since my initial diagnosis and 2 years since my brain met, and I am still here. Our daughter graduated from high school in June and is attending college. Our son has established himself in a very successful career. We couldn’t be more proud of the adults they have become. Although I will never be cured, I take Tarceva daily and my scans continue to show no evidence of disease in my chest, brain, or any other part of my body. My doctor says that I am an anomaly, and I am ok with that. I feel confident that I will be here to celebrate many July 4ths with my family.