Musings of living, living with Stage IV lung cancer, a terminal disease…
I often feel as though I live in three lives or worlds. There’s my happy life that’s filled with joy, love, family, nature, and crafting. It’s the one I have some control over. Then there’s the world around us, the “real” world, the one that is way out of balance and ever so scary. I always say to not worry about things you can’t do anything about. I’m worried, and all I know I can do is to vote. It doesn’t seem like enough. And finally, there’s my cancer world. Right now that world is just plain sad. Sadder than sad.
I am lucky to be ROS1+ and to be in a clinical trial with a drug that has been keeping my cancer controlled for 2.5 years. Over the past four years I’ve become friends with many in the lung cancer community. This life too is filled with love and hope. In the past two weeks several people I know have died or made the choice to begin hospice care. When over 400 Americans die every day of this disease, I guess it’s not surprising. I’ve not “met” any of them, but we are friends through Facebook, the ROS1ders, our blogs, and advocacy. This is beyond sad. It is unnecessary . If lung cancer research was funded at the rate of other cancers, maybe they would still be here, like me, living with lung cancer. Or, maybe if their PCPs had taken their symptoms seriously, before the disease metastasized, maybe they would have been able to be cured. But no. I hope their transition was peaceful and filled with love. I grieve for their families, especially their children. My third world, my cancer life. Please urge your representatives to work to increase federal lung cancer research funding.
In reality these lives of course intermingle and I must find a balance that works for me. Just as anyone who needs to deal with the many aspects of their life. I feel blessed that I’ve been able to simplify my world significantly . I can’t imagine living with Stage IV cancer and treatments while working and raising young children, but I’ve friends who are. Please keep them in your thoughts and your prayers.
I continue to play. Here are some photos of my latest paper bag journal and a page in an ephemera folio I made. Love to all.