After the diagnosis, we started talking about finding our “new normal” and redefining ourselves but that’s a complex, obviously. Ken started saying that he was working on “Ken 2.0,” like this whole thing is a new software release. After a while, though, we decided that it’s more like he’s a refurbished model, a few nicks and scratches but the damaged parts were replaced and he works just fine.

For Ken, the scars are from life’s battles, the norm as we all fight through life.  I like to imagine that our scars are visual memory cues. The scar on my right hand reminds me that my sister and I played girl detective games (a la Nancy Drew) with the neighborhood kids when we were little (while running from (or after?) the bad guy, I fell over a case of beer in our garage and cut my hand open). The scar on my eyelid reminds me of how sick I was with the chickenpox I caught (from my sister) in college. The big one on my left knee takes me back 11 years to a soccer field near Monroeville, when I tore my ACL helping Tristan’s team warm up before the soccer game.

These days, scars remind Ken of cancer and colostomy bags (which sounds like bad poetry or maybe the title of a punk band).  I’ll confess that I’ve been struggling, really struggling, to understand his abhorrence for the colostomy bag. Obviously it’s not desirable but in my narrow focus, it’s way better than death. For him, it’s part of the conversation every cancer patient has:  if, to win the cancer battle, we have to metaphorically burn down the city, what have we won?  The quality of life conversation is a critical part of cancer treatment and we talk frankly about the many scenarios. For now, I will say — loud and proud — that I am emphatically still of the opinion that a colostomy bag can be part of a great LIFE and I’ll bet that most of the half a million people in the US who have a colostomy bag would agree. Nonetheless, I won’t shut down the conversations that he needs to have about death and dying.

There’s a Yevgeny Yevtushenko poem called Colours that I came across in my impressionable youth (oh, yes, I memorized it, as obsessed teens do). Phrases from it keep popping into my mind:

Fear hems me in. I am conscious that these minutes are short and that the colours in my eyes will vanish when your face sets.

Uplifting, right?!  Another poem that won’t leave my head is Separation by WS Merwin. If you are interested, both are easily available on the magical internet (again, yay, google!).