Today I reach a momentous milestone in this cancer journey. FIVE, yup five, years since we heard the words, “You have a mass in your left lung.” Some people call each new year reached a cancerversary. I celebrate every day. But, this five year mark stands out statistically when you research Stage IV lung cancer. So, it is an important milestone. (Don’t rely on those stats though, thanks to research and new treatments they’re outdated before they’re published.)
Even though that five year marker is a momentous milestone generally in any cancer journey, it has a different meaning, I think, to those of us with metastatic cancer being treated with a TKI. Since my diagnosis the first medication I was on has been FDA approved for first line treatment of ROS1+cancer https://lcfamerica.org/lung-cancer-info/types-lung-cancer/ros1-positive-lung-cancer/, and the drug I am on currently (lorlatinib) has not yet been approved for ROS1, but has for a different gene rearrangement/fusion, so maybe soon. And there are now other drugs in clinical trial. So far each time that I’ve needed treatment (initially, and then when little Ros hopped in his speedster, traveled to, and settled in, my brain), it’s been there for me. The longer I live, the more treatment opportunities there may be when little Ros sneaks by Lady Lorlatinib. It amazes me that the testing and treatments were (and are being) developed for something that is in only 1-2% of lung cancer patients. Especially since lung cancer research is so underfunded compared to other cancers less prevalent. I am grateful for those who care enough to do this work. They and their work are what makes this day momentous.
For the first couple of years or more I didn’t speak or think in the long term (no “next summer, this fall, etc.”) Even though I was filled with hope, and felt very lucky to have ROS1 identified and a drug available to treat it, life had changed so suddenly, and continued to, that the present was too uncertain to think about future possibilities. And then I reached my first goal I set to be here for: to see our eldest granddaughter graduate from college and become a nurse. (She had just finished her first semester when I was diagnosed.) It was about the time of her graduation that I realized I had begun to look to the future, thinking about next year’s garden, next Christmas, the next outing. And now I think, “Why not make plans?” I still don’t know if I’ll be here, but no one really does. And life around us moves on anyway. Now I’ve seen two grandchildren graduate from elementary school (one is driving!), and have two more elementary school graduations to look forward to next year. I’ve seen seasons of gardens, summer with grandchildren, and hundreds of sunrises. I nursed my Rusty boy (dachshund) after a surgery one summer and then back from paralysis last year. I’ve numerous adventures “because now we can”. Our goats we got that first summer (after diagnosis) as kids are over four years old, our puppy is five. And now we’ve sheltered in place for ten months, trying to keep us and our loved ones safe in the pandemic. Seems incredible.
On this day I continue to feel filled with hope, peace, and gratitude. I live well, with cancer. I do not fight or battle it, I leave that part of the work to the rest of my team (medication, researchers, doctors). Yes, it’s true my med has some unpleasant side effects, and has made me a little more wacky and a little (quite?) chubby. I seem not to be able to do much about either of the latter two, so I make lots of fun things, staying busy busy busy, and I bought bigger, stretchy clothes. We’ve embraced the life we have, happy to have one another, our family, our goats and dachshunds, our home and camp. I’ve plenty of crafting supplies and ideas. I can watch the birds and craft all day. It is easy for me to find joy in the everyday every day. I am so fortunate.
My next goal is to be able to have a fun family cookout once we all are vaccinated. So far our family has been able to stay safe. I hope that for everyone reading this. Stay home if you can. Wear your mask and distance if you must go out.
The world is in such disarray, but I have great hope for our future. May we take the positive pieces of all that’s happened and work toward the future we want for our grandchildren and beyond. I hope you can find some joy in your day today. Thank you for your hopes, prayers, and thoughts. Love to all.