If you’ve read Schrodinger’s Cat, then you might have been rooting for me.
I’m sorry to disappoint.
I stand a 72% chance of metastasis over the next five years. And as far as I know about ocular melanoma, that means I’ve got a profound chance of being screwed.
The math breaks down like this:
If you could get 100 Type 2 patients in one place (it’d take a while, there aren’t many of us)…
…within the next five years, 72 of us will go on to develop metastatic cancer of various kinds. Most–80%– will develop it in the liver. That means about 58 people. At the five-year mark, only 8 of those people will still be alive. The remaining 14 will be fighting other cancers, which have different odds of survival, but I’ll give them the benefit of the doubt. I’ll call them “alive.”
So, at five years…
Eight will have survived liver cancer.
Fourteen will have survived other cancers.
Twenty-eight will never have developed any cancer past the original OM.
That’s 50 people who’ve made it to five years in every possible human state from “perfectly fine” to “dead in hospice three days after the five-year mark.”
The other 50 people? Already dead of a secondary liver metastasis of intraocular melanoma.
So, I’ve basically got a 50/50 shot at livng theough this…whatever “it” turns out to be.
I won’t lie. I’m terrified.
I’m not terrified of dying. I know what happens then. I’ve seen it, felt it, and have no worries about it. (Sounds weird, yes? Welcome to my life. And yes there’s a story there.)
What scares me…
…is pain. I can cope with damn near anything but continuous, grinding pain. I’m learning to work around physical debility. I might even learn to work around mental debility. But pain? Put me through the wringer, God, but spare me pain.
What scares me…
…is the effect my journey is going to have on my innocent daughter, my already-barely-coping husband, my stressed-out family. Put me through anything, God–make me jump through every hoop there is. Just spare my family, would ya?
Yet just as soon as I make those pronouncements, guess what God will be tempted to hand me? When this horseshit started back in August with numbness in my feet, the very thing I congratulated myself on–“at least it isn’t cancer”–turned into the biggest self-fulfilling prophecy of my life. I can’t keep giving God that kind of ammunition.
So I can have no assumptions, no preferences, no estimates about how my life–and possibly my death–should unfold. I can only have what is.
And that’s going to have to be enough.
I’m sorry I hadn’t seen this post before now, Kathryn. I’m sorry the results weren’t more encouraging. But being in a similar boat in terms of uncertainty about the future, I know you’re finding a way to make it through. Whenever I go to something at my kids’ school or they come home and I’m here to hug them, I try to focus on the gratitude that I’m here to see or do it, that I got to have that moment. That isn’t always easy, especially when you’re feeling physically exhausted, but it is a constant goal of mine. Sending you love & light, Deborah