I didn’t sign up for this.

I think I have made my peace, or as much peace as I can right now, with the fact that I most likely will die much sooner than everyone else I know.  Of course this sucks, but I don’t find in myself a lot of feeling that it’s unfair. I don’t ask, “Why is this happening to me?” This–the likelihood of dying soon–is kind of what I’m signed up for at this point.  So I’ll try to make something good come out of it too.

What I have not made peace with is the amount of pain I am experiencing along the way, or the disability that comes from my peripheral neuropathy: the numbness, tingling, shooting zapping feelings in my feet and the numbness, constant cold sensation, weakness, and clumsiness in my hands–plus pain with most contacts of the left hand, which I keep tucked away in a mitten for protection.  I am basically one-handed right now and that one hand ain’t so great.

The back pain that was my daily torture for months has subsided substantially, and my daily headaches have pretty much gone away. Those are good developments.  But the extreme edema left over from my December hospital stay has caused a lot of foot and leg pain and made it even harder for me to walk.  Before the hospital it was hard for me to walk any distance, but since then I have a lot more weakness and pain in my legs–maybe due to something called steroid myopathy.  (Still working on getting off steroids.)  It is painful and hard to stand up and I am unsteady as I shuffle around.  And my knee still mysteriously hurts.  And my neck muscles spasm some mornings for an hour or so.  Why? Who knows.  (I am taking various drugs to address the pain with varying results.)

So when it comes to the daily pain burden and the increasing disability, I do wonder, “Why does my journey have to include all this? It’s not fair.  It’s too much.”  It’s harder for me to handle than the underlying fact of incurable cancer.  If there is a way I can keep on living despite this disease, does that mean years ahead of hurting this much every day? Of needing this much help with daily basics like getting dressed?  Wow.  I sure did not sign up for that.


2 thoughts on “I didn’t sign up for this.

  1. Deb

    I am so sorry that you are experiencing that much pain. And such debilitating things like not being able to use your hands. Well, I think it’s unfair, and I’m pissed off for you. Sending much love and ongoing offers to be there to help. xoxoxo

  2. Shelly

    You didn’t goddamn well sign up for any of this! You are handling it with an amazing amount of optimism and cheer, but that doesn’t change the fact that you shouldn’t have to handle it at all. I think it’s okay to say the whole thing isn’t fair. Adults always tell children, “Life isn’t fair,” and that’s true: It isn’t. But maybe part of what makes us human is a deep desire for fairness. Cancer isn’t fair. Not for anybody anywhere. If only it would stop hiding inside bodies and come out to face its victims for a “fair” fight. Pistols at dawn? Never mind: I’d rather shoot it in the back.

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