Usually, after my every-three-months scan comes up clear (and I’ve done this often enough now to be able to say “usually”), I breathe a sigh of relief and happily face a few months of reprieve. This time, however, I had a different response. Don’t get me wrong – I am truly grateful and can even say thrilled at the results. Many are not so fortunate. But the worry did not completely abate. Partly it is because my primary oncologist told me that he wants to continue scanning every three months for three years (from my surgery), instead of the two that I had anticipated. That isn’t the worst thing in the world, and I can only hope that I make it three years in remission. And I do understand that it is good to catch things early. He just reminded me that my rare cancer recurs frequently, and that my specific version was aggressive. This isn’t one of those “make it for five years and you’re pretty much home free” types of cancer. This kind (leiomyosarcoma) is a “you’re never home free” variety. I don’t think I’ve heard a single story of “one-and-done,” although that doesn’t mean that it has never happened. I suspect anyone who may have made it into that camp dropped out of the support group, and we just don’t hear about them. I do know of some twenty-year survivors. But the statistics aren’t good. You don’t want to know the five-year survival rate. Let’s just say, it isn’t great.
In addition, I had a melanoma cut out of my leg last month. My dermatologist says it was early stage, and she got clean margins. I assumed I was done with it, but when I went to my local oncologist after my recent scan, she told me to watch out for swollen glands and lumps in my groin, which would indicate the melanoma having spread to lymph nodes. Sigh…One more damned thing to worry about.
As Annie Lamott says, “Life is just too goddamn lifey sometimes.”
Despite my gratitude for it having saved my life, when I’m immersed in the medical world, I all too easily fall into fear of the statistics. I know the docs don’t really intend to scare you (at least not the ones I’ve dealt with), and I realize they have seen all the worst-case scenarios played out. And I suppose it’s better that they do inform you, unlike the old days when the truth was so often hidden from patients. But our emotional responses are not really their concern (and yes, there are still so many ways western medicine sucks).
If I allow myself to live in the grip of the statistics monster, I don’t know how to have a decent life with whatever time I have left. And right now my life is way more than decent, despite cancer, the pandemic, climate collapse and political chaos. I have a loving family, a good home, healthy food, poems to write, communities to be part of, and that medical care that I’m complaining about. And I don’t live in a war zone.
So, after dealing with all the doctors in their stark white, intimidating and impersonal exam rooms, I have to spend a few days shaking off the fears and the statistics. It’s not easy. I wish I were the kind of person who can more easily shrug things off and move on. Before I had a life-threatening diagnosis, I didn’t have a clue about what life is like for those who have. Now I know. Let’s just say, it’s a lot to come to terms with and I hope you never have the experience. I’m not writing this so you will feel sorry for me. You have your own bag of worries to carry around. But writing is something I do to help me let go of the fear. I debated about sending it to you, but I decided that it could help (me, if not you) to give you a glimpse into my world, into my lifey life. I don’t know about you, but I do appreciate hearing about what is really, truly going on in my friends’ lives and struggles. Maybe you do, too. No point in hiding, is there?
I do feel determined to not let these situations run me. I would dearly love to turn my attention outward and away from myself.
Here’s the poem that is part of my banishing the statistics demons:
Victimized by Statistics
The news is good,
I tell myself.
Free and clear for
three more months.
Then I enter
one of those horrid
little white rooms
where I am only
another statistic
waiting to tally.
My relief drains away
under the palpating
hands, and I shrink into
an uneasy and smaller
version of myself.
True, they royally grant
me my reprieve, but
along with it comes
instructions to be
vigilant and wary.
As if I needed
one more dose
of fear. As if
there is paltry hope
beyond their statistics.
As if it is of no concern
that once again
I feel like a
ticking time bomb.
After writing this, I decided to take one more step in healing this situation. so, I made a SoulCollage® card that is about moving beyond being a victim of the statistics. Here it is:
Sorry for the repetition for those who read this on CaringBridge.
