For someone with a terminal disease who statistically shouldn’t be here, I don’t think I spend much time thinking about dying. It doesn’t upset me to think about dying, but I’m really much more focused on living. I’m way too busy to spend much time on the negative “what ifs” of this journey.
You see, I’ve just been given this wonderful opportunity to spend almost all of my days doing whatever it is that I choose to do. While I may not be well enough to do everything I may enjoy or want to do or sometimes think I need to do, there is so much I CAN do. Thanks to the doctors at Dana Farber and the clinical trial targeted therapy drug Lorlatinib, I feel quite well.
So instead of taking me down rapidly as this cancer named ROS1+ intended to do, it has provided opportunities that I may not have had or would not have taken advantage of. These opportunities are both tangible and intangible, and infinite I imagine. And so now a new path on the journey has just begun.
It began on that first day of school when it seemed like everyone else was going somewhere and I was not. No real plan, no real reason to do anything in particular. Every day could be a new adventure. I could read all day. That’s very satisfying. I could sleep all day. No, not unless I’m very tired. Or, I could bake! Oh dear, we’ve just completely stopped eating sugar, and are reducing how much wheat we eat. No, no baking for now. Well, how about making pickles? Haven’t done that for years and we’ve still plenty of veggies. Pickles it is.
Pickle making is science and art combined, a beautiful experiment each and every time, right up to the moment your guinea pigs (children, grandchildren, and other willing relatives) take the first taste. Since I started making pickles a few weeks ago I’ve made sour cucumber, garlic dill cucumber, bread and butter cucumber, ripe cucumber, garlic rosemary tomato, garlic dill summer squash, and bread and butter summer squash. Yup, it’s true. I’ve been making pickles! I’ve used tried and true recipes passed down from my grandmother or Dan’s mom, and ones I’ve found online. Some have been quite popular, others not so much, but all have found a home.
Now pickle making isn’t the only opportunity I’ve taken advantage of. I’m part of a trio (and that number may grow any day now) that goes on NOW WE CAN adventures. Now we can, and so we are! We’ve traveled near and far (nah, not really far), so far going to the Orono Bog Boardwalk, Common Ground Fair, and Nervous Nellie’s. Just the names make you know we had fun! Here’s some proof!
And then there’s the hundreds of soccer and baseball games I’ve been to this fall. Last year cancer kept me from going to many of the kids’ games, but now that cancer keeps me from working, and I’ve started Lorlatinib, I have energy enough to go. So, go we do!
And on and on it goes! None of us know what may happen in life, and I certainly never know what news the next scan or MRI may bring on this cancer journey, but right now I’m just too busy finding joy in the everyday things of life to worry about dying!
polepole ~ breathe 