Hi Tom and welcome to the club you'd never chose to join.
My experience with this disease has lasted almost 5 years now and for 4 of them I've been a stage IV. I accidentally found out that something was remiss when I went into urgent care after dragging myself through a week working my school job and just didn't have the energy to go waitress on Friday night. I was diagnosed with influenza B, but they saw something on my chest Xray and wanted to see if it was gone when I recovered. Needless to say, it wasn't, and I started the journey I knew absolutely nothing about. It was just a whirlwind of appointments, biopsy..... I ended up having my upper left lobe removed; my local oncologist at that time thought that all was well and didn't believe any more treatment was warranted. A year later I was told I was stage IV with a very limited life span unless by some very small chance I had a mutation. My family was devastated, I couldn't go for longer than 2 minutes without thinking of my impending demise. My life was consumed by the grief that comes from having to say goodbye to everyone and everything you love. I sought a counselor and ended up seeing a fantastic psychiatrist. We came to the conclusion that there was not a drug out there that would make me feel good about dying, but he did prescribe hydroxyzine and copied off many pages of legalities that I wanted to make sure I figured out (wills, health care directive..). Soon after that appointment I decided I could spend the rest of my life grieving and in fear or make the best of the life I love for the time I have left to love. Shortly thereafter I received the spectacular news that I have a ROS1 driver. I started a targeted therapy drug called Xalkori almost 4 years ago and I am here today enjoying my life. The side effects are not always pleasant, but they aren't that bad, and life is good! I know that someday my cancer will outsmart my drug and I can only hope that when that day comes another drug will be introduced that will continue the battle. I want to be a crusader in the fight for research dollars. Lung cancer is the lowest funded and the largest killer. I am hoping that by sharing my story with others I can do my part in raising awareness in the community of those fortunate enough not to know about this rotten scary disease. I am also hoping to share a message of hope to those that are like you, new to all of this and terrified of what's to come. I suggest to always bring at least one extra set of ears and embrace those people that love you and want to be there for you. I'm so glad you found this site and are part of the Mayo, which I believe is absolutely fabulous.
Hugs and hope,
Cindy

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