Recently my friend Cynthia wrote that in a consultation with University of Colorado’s lung cancer guru Ross Camidge, MD, she was informed that the 5 year survivorship rate for stage 4 lung cancer is now 2%. In a recent blog my friend Linnea Olson revealed that when she was diagnosed 11 years ago, the 5 year survival rate was 1%. In 11 years survivorship has doubled. Honestly? That’s not much improvement but I am thrilled to be in that 2%. My question though is ‘WHY’? There is nothing special about me. There are no mutation testing or maintenance chemo. How it is I’ve survived to become one of the 2% of patients who survive this long?
My cousin Deb Letterman is my primary caregiver and an RN. I asked her why she thinks I’ve made it this far. Her answer? My attitude. She remembers things from the very beginning of this journey, things that I was too sick to remember. “You had the attitude that, okay, this is cancer, you couldn’t be cured but you were going to live the very best life that you could. You took care of the dead stuff and focused on living”.
That’s only part of the equation. And its true. When first diagnosed my oncologist told me I might survive 10-15 months with treatment. When Deb and I went back to see him the second time we were laughing and joking. He was a bit taken back I guess because he suggested maybe we didn’t hear what he had told us. I recited the statistics he shared and informed him that with that information I went out and paid for and planned my cremation and memorial service. I established Deb as my Durable and Medical Power of Attorney. I arranged for distribution of my belongings. I was done with all of that death and dying stuff and planned to focus on living. He must have approved because in 5 years he has never foisted me off on his Physicians Assistant. He always greets me with a big smile and wants to know what I’m up to.
I dug back in my memory to remember how my mom made a point of looking for beauty in the natural world and how she embraced the beauty she found. It helped her tremendously to focus on the positive things in her life in the brief 4 1/2 months she had between diagnosis and her death from the very same adenocarcinoma I have. It taught me that it’s easier to focus on the positive and far more rewarding. Finding the silver lining in any cloud became my specialty. Letting go of old grudges and anger made life more pleasant.
Another piece of survival came from the care I received, first from my medical team but more importantly from my caregivers, family and friends. When Deb or her husband David Letterman couldn’t be there my sister Jan Krist-Finkbeiner, my brother Dan Cutlip or my friend Carole Claire spent the night on my couch making sure I took my medicines as directed and that I didn’t fall and injure myself when I was so deeply fatigued from the combined chemo and radiation.
Later, other challenges to my health arose, my family was on the spot getting me into the ER or urgent care. Only once did I think “Uh oh. This is it. I’m going to die now.” I’d remembered reading that most people die from side effects of cancer treatment and this might be it. That was when I experienced a rapid increase in the size of my pleural effusion and developed a pericardial effusion. My family got me to the ER as soon as I mentioned shortness of breath and a pain in my shoulder. Their fast action got me in and prevented serious heart damage- perhaps even death.
As I start getting back into parts of my former life I was often greeted with the words that acquaintances thought I was dead and tell me I’m a walking miracle. I smile and tell them yes. I tell them that God answers prayers and I am living proof of that.
Connecting with others who had cancer made a huge difference. Especially other lung cancer survivors. They taught me that I am still a valuable person and that no one deserves cancer, smoker or not. With that I was able to let go of the guilt I carried for believing I’d brought this on myself. I was able to forgive myself and really focus on the business of living.
There’s no possible way to know if any or all of this contributed to that exceptional 2% survival status I enjoy but I embrace it.
About the picture: My sister Jan is on the left, my cousin Deb on the right. We were at a Tiger game and the home team came through that day..