An introduction
Why I decided to start a Substack and go on sabbatical
I was diagnosed with rare sinonasal cancer at age 30. I’m turning 40 in a few days, and still haven’t reached an end point in my journey with this disease. The early years were marked by relatively simple surgeries and aggressive treatment protocols. My options became more limited with each recurrence and the treatment itself caused irreversible damage. We addressed it with complex reconstructions - borrowing and repurposing pieces from my own body, removing the rot and building new structures out of muscle and thread. Now a new tumor is slowly unstitching what was fixed, and the vicious cycle continues.
There is no cure for this thing and every measure taken is in an effort to buy a little bit more time. My surgeon told me the last round yielded two good years, and she’s right. There was a cost though - a rebuilt jaw and mouth never works as well as the original. I don’t mind having a prosthetic smile but it’s been life-altering and challenging at turns. Recovering from major surgeries, re-learning how to speak, how to chew and swallow…these experiences were deeply humbling and gave me even more determination and resilience. And yet, it’s simply a matter of time before we arrive at incurable and inoperable.
Lately, I’ve been giving serious thought to what a 5-10 year timeline on my life would really mean. A while back, I read A Year To Live, which is all about this question as a type of contemplative exercise. This isn’t conceptual for me, but practical. I have a disease that is incurable but also slow moving, and the likely result is that it kills me, almost certainly before age 50. So if I have a fair amount of confidence in this outcome, what, if anything, would I change about how I’m living my life? What do I want to be doing differently?
I want to fly more and work less
I want to tell my story because I think it’s interesting and maybe even inspiring
I want to spend time with the people I love and see more of the world
I want to read books and learn new skills
I want to be kind and gracious to everyone I encounter
I want to hear new things, and experience more art and music
I want to help others
I want Lindsay to have the best life possible after I’m gone
There are also worries:
I worry that I lack the wherewithal and resources to make these things happen in whatever time remains
I worry about self aggrandizement and self promotion (is my story really inspiring or am I deluded?)
I worry that I’ll disappoint myself
I worry about asking for help
I worry about another surgery
I worry about how all of this impacts Lindsay
Where do we go from here? Well, there’s a plan for the near term:
I’ll be undergoing surgery to remove the new tumor (relatively minor compared to the last few)
I’m taking an extended leave from work
I’m launching Unflappable as my primary creative project - kinda nervous but also excited to share it with you all
What happens after my cancer sabbatical is unknown, but I’m excited for dedicated time to refocus. Thanks for taking the time to read this.
Cheers 🍀🍻
Jonathan
