Imagine you are a nonsmoker who has just retired and planning on enjoying your new life across the country and you discover you have stage 4 lung cancer! That pretty much sums up what happened to me. I was just getting ready to move from NY to WA state when I started coughing up little bits of blood. I went to the doctor, who sent me to an ENT specialist who sent me for a chest xray and then a catscan because a nodule was found in one of my lungs on the xray. They couldn’t rule out cancer; however my health was excellent and so they told me to follow up with a pulmonologist when I got to Seattle.
I saw the pulmonologist who scheduled another catscan and performed a bronchoscopy. The nodule had not changed and the bronchoscopy was negative for cancer so the pulmonologist told me I did not have lung cancer but I should continue to get scans every six or eight months.
About eight months later, I started having bad neck pain so I went to a physiatrist who took more images and sent me to an orthopedic surgeon who finally told me that he thought I had lung cancer that had metastasized to my neck.
It was a terrible shock to both me and my family and I really thought that I was dead in the water. Luckily, after surgery to remove and replace the cancerous neck bones. a biopsy showed that my lung cancer had a mutation that was treatable with a targeted pill. That lasted three and a half years because had radiation to a few little progression spots. But then last May, I started having headaches a week after my petscan and then pain in my neck so I had a brain MRI which showed a new spot in my neck. A biopsy revealed another targetable mutation so I could avoid chemo again with a pill.
Luckily, I had COBRA for 18 months and then it was extended. Even though it was expensive, without it, all that I had saved up for retirement would have been gone. Medicare then kicked in and I have been so lucky to have affordable and accessible care. Can you imagine fighting cancer while worrying about having enough money to pay huge medical bills?
Currently how long this pill will last is the “emotional gun to my head” as I know that the average time on this pill before cancer progresses is about a year. After that things start getting ugly with chemo and clinical trials.
This disease is so aggressive that I have lost many other lung cancer survivor friends…many of them younger non-smoking women with little kids …and some pregnant women as well. I’ve learned that lung cancer kills more people than most cancers but is the least funded of major cancer types. I know that my days are limited so I try to live with that and spend as much time as I can enjoying my life while I still have quality of life. My advocacy for lung cancer will continue as long as I’m alive because RESEARCH =SURVIVAL and that is my only hope for living longer.