Friday, February 13, 2009

Wild child

Josh is on a roll lately.

His post about a painful complication struck while removing a chest tube resonated, er, deeply with me. (You could say it tugged on something in me.) He writes, "It would have been somewhat comical if it didn't hurt so damn much. I did feel macho the way the doctor complimented me on my pain threshold (even as I sucked on some fentanyl). Inside I was crying, though. Sometimes the big things like the amputation or enzymes flushes into my lungs don't get to me as much as something minor that should go a lot smoother."

I want to say something serious about this later, free of tasteless jokes, in context of trying to explore hospital-related post-traumatic stress disorder. There's so much truth in that last sentence. For now, though, one thing that stuck with me about Josh's story and some of my own experience is how personal this kind of agonizing snafu starts to feel, about how you sort of move from an odd sort of disembodied remove from your own body to suddenly having the latest disaster or discomfort tie into every grievance in your life. Every disappointment, every shortcoming, every failure, every loss. It's such an overwhelming sensation, it doesn't make any rational sense, and yet there it is. There's a reason why doctors call injuries and illnesses "insults" and "complaints."

The temptation as a sick adult is to want to revert to childhood; you develop such an agonizing longing to give up all agency and just be cared for, a desire that is often completely at odds with your adult responsibilities and is certainly at odds with the complex process of self-assertion and effort needed to optimally manage a complex and rare disease.

This hunger to regress may be why so many of people dealing with cancer are so sensitive when people talk about how we are "so brave" or they "admire us." You don't feel brave because you didn't choose this and wouldn't choose it in a million years, and inside of you there is a hurt child that wants to drop everything and be held.
Maybe this should be a separate post, but I had a less teary riff responding to another part of Josh's post. In the dark way of a sarcoma patient, I felt some bitter amusement at Josh’s experience with dialing an alternative cancer-care center:
Finally, as we're at this turning point and trying to find what's next, I thought I'd give Seattle Treatment & Wellness Center a try. They bill themselves as the place to turn when conventional treatment fails. But I didn't see it as some hocus-pocus alternative either. Good people have told me about them and I know from reading their literature that they combine traditional chemos with naturopathic remedies. So I called and left a message detailing my disease, where I'm at, and that I'm turning to them because I'm low on options. They phoned back pretty quickly and basically said, 'we can't help you.' Epithelioid sarcoma is so rare that they'd send me back to SCCA. Oh well. Kim laughed when I told her I got no hope from 206 FOR HOPE. It was worth a laugh at least.
Starting with, "You know it's bad if you get no hope from (206) FOR-HOPE," I started writing "you know it's bad" riffs...

You know it’s bad if Mother Theresa is too depressed to pray for you. 
You know it’s bad you send alternative medicine people looking for alternatives. 
You know it’s bad if Dick Cheney starts sounding encouraging. 
You know it’s bad if even Barack Obama lacks the audacity to hope on your behalf. 
You know it's bad if you start hoping "you're too big to fail" and looking for stimulus.
You know it’s bad if… you can't laugh with your wife.

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