Even I Have Limits

March 23, 2010 at 2:27 pm (Uncategorized)

I can’t keep getting chemo.

This realization came to me from my body. I awoke yesterday with absolute certainty that I must make changes to my treatment plan. It was as if the muscles in my neck that are knotted from dry-heaving, the depleted armies of my blood cells, and my blasted neurons had all summoned enough energy to deliver a telegram. I opened my eyes, took in the S.O.S. call, and decided that I must give my body a break from the poisons I’ve been willingly taking.

Such clarity is unusual for me. I spend most of my waking hours in my head. This isn’t necessarily a bad way to live. After all, I’m a writer by training and trade. My job is to convert experiences into language, to condense the physical world into symbols and structures the brain can comprehend. But I tend to over-think issues. Unless I keep myself sternly in check, I can turn the making of any decision—from which brand of Camcorder to give my father for his birthday to which doctor to entrust with treating my sarcoidosis—into a fretful, time-consuming mess. I can over-research and over-think myself into a frenzy. Thankfully, I’ve learned that turning every decision into an existential muddle doesn’t ultimately lead me to the best solution—just to a solution along with a tension headache, two wasted days, and everyone I’ve consulted about the topic sick of me and the decision.

Still, I’m not accustomed to such total, visceral certainty.

I wasn’t even consciously mulling over whether to keep going with the chemo. However, I was growing more aware of the physical cost chemo was extracting from me. For the past few months, I have been seriously ill for almost a week after getting a chemo infusion. For example, today is Tuesday—six days after my last dose of Cytoxan. I’m still having trouble keeping food down and staying hydrated. My bowels have liquefied—as if my lower gastrointestinal tract doesn’t want to be excluded from the attention my upper GI is getting with round the clock barfing. Dehydration only magnifies chemo exhaustion. Lifting my arms to wash my hair is more than I can do. Holding a glass of water is hard work. I’ve been sleeping seventeen or eighteen hours a day for the past week, but I don’t feel at all rested. But I’m awake long enough to feel like my life is collapsing around me. Andrew climbs into bed and plasters himself next to me. When Jay has to uproot him—for dinner or school—he sobs. I try to console him, but my tongue is thick and heavy in my parched mouth. I’m nonsensical from the anti-nausea medications. So I wave to him as he stomps out of the room. Before I can worry about him, I’m back asleep.

It’s a testament to how important my epiphany is that I’m even trying to organize my thoughts and type this.

Isn’t there an elephant in the parlor—sitting rather quietly and demurely for an elephant, but sitting there, nonetheless, right next to my blinding realization? What if chemo is helping keep at bay the worst of my neurosarcoidosis? Shouldn’t I talk to my sarcoidosis specialist about this (and maybe get a second opinion) before deciding to stop chemo?

I will consult the experts. I will consider whether enduring a few more weeks or months of chemo hell might finally blast the sarcoidosis out of me. I might even make a list or two.

But after hearing the clarion call of my own flesh, I understand with new depths that the field of sarcoidosis experts includes me.

4 Comments

  1. Sandra Ahten said,

    My vote is to give you intuition at least as big of vote as your doctors or your logic gets.

  2. Cheryl W said,

    “The field of sarcoidosis experts include me…” Boy did you hit that nail on the head!

    I also struggle with the treatment decision and so far I’ve resisted. However, when the disease scares the wits out of you, you run to the nearest doctor for the meds.

    There has to be a better way Rebecca and I pray we all find it. I support your decision, I think if it were me I would decide against the chemo as well. Let’s hope the dietary changes, Rituxin and the other cocktails will keep the nasty NS at bay!

  3. Nancy said,

    Have thought of you and am sending you some strength and clarity – sounds like one kick in the head too many, Nan

  4. To Poison Myself on Wednesday—Or Not to Poison Myself on Wednesday « Chronic Town said,

    […] a good question. When I wrote “Even I Have Limits,” I made specific my hitherto generalized unhappiness about my semi- monthly doses of Cytoxan. I […]

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