I am ever so grateful for my ROS1+ FaceBook group and my fellow ROS1ders. They are my greatest source of information, inspiration, and support (outside of my network of family and friends). In addition to this group, I follow several blogs of fellow lung cancer survivors, groups, and foundations. From all of these sources I glean varied things that help me in a multitude of ways.
After we began this cancer journey, and I’d completed radiation, started Xalkori and begun to regain strength, we were finally at a place where we could stop, take a deep breath (well, Dan could – not so much me…), and reassess where we were. That’s when we began to hear the term “New Normal”. I know it is meant to be a helpful term, I think it’s a way of saying that you can find normalcy in this world of cancer. I think it helps people think of managing a chronic disease or living with metastatic cancer as a change in how things are done that can actually feel normal.
I’m fairly certain my first few months, as hard as they were, were much easier than many in my condition and situation because of Dana-Farber doing the genomic testing that found my ROS1+cell mutation. Instead of chemotherapy , after my radiation I was given a targeted therapy drug, a pill taken twice a day. So while Xalkori(crizotinib) was shrinking the tumor, my ribs were healing, my esophagus was recovering, and I was slowly regaining strength. That’s when we tried to embrace this concept of New Normal. Yes, we settled into new routines and adapted to the changes quite well. Taking a backpack with a change of clothes, Imodium, and adult wipes with me whenever I leave home has become my normal. Taking medication regularly, something I’d managed to escape in 58 years, has become normal. But, try as hard as I can, I do not think of our everyday life as normal.
Normal: (noun) the usual, average, or typical state or condition. (adjective) conforming to a standard; usual, typical, or expected.
We (my support system) do an incredible job of living life fully and finding joy in all the normal things of life. Yesterday Dan and I had the chance to “high five” three of our four youngest grandchildren at a soccer event. The fourth was playing baseball (we watched him last week and likely will next week). Upon seeing a pic of her little brother playing soccer, our eldest grandchild spoke wistfully of “those times” while at college studying. That’s all normal! It’s what our family does. And, Dan and I find lots of “normalcy” in our days at camp, seeing the sun rise and set, happy and in love as we’ve been for well over forty years.
Maybe I’ve made normal a “feeling” and it really shouldn’t be. But I refuse to think of some aspects of this journey as normal. Especially, not my normal. Things from the complex to the very simple. For example, hurrying up the hill. I’m convinced it is not normal to huff and puff going up our hill. That may be what happens to me right now, but even for me, in my condition, it isn’t going to be my normal. You see, I’m going to get these lungs in such great shape that I can run up that hill with no puffing! Okay, so maybe that wasn’t as simple an example as I thought. Here’s another – that cloud that hangs over you when you have metastatic cancer and you have scans every six to eight weeks to monitor medication effectiveness or disease progression. Now really, does anyone consider having to deal with that normal? Yes, it is now a routine that we’ve figured out how to manage without it intruding upon everyone’s daily life too badly, but normal?
All in all, we live a pretty ordinary life. It’s an incredibly rich life, filled with joy. That has only been enhanced by this cancer journey. My new normal? Being present, joyful and grateful every moment of every day!
polepole ~ breathe 