A Spork in the Road

Fortunately my neuropathy has been, overall, more interesting than painful, for which I’m very grateful.

The first couple of days after chemo, I often experience tingling in my feet, as if they’d fallen asleep. My mouth can be a little sensitive, which may be caused by a number of factors. My body in general feels a little numb on the surface: sensation doesn’t register quite as vividly as normal, except for light, which is blinding.

Then over the weekend, after my steroids wear off, my back radiates a mild pain from the spine outwards, between my shoulder blades. Massage worsens it in the short term, although seems to improve it a little bit overall. If I sit very still and avoid pressure points, the pain dials down to nearly nothing.

The following week I get a symptom that’s not painful, but bizarre and annoying: loss of positional sense.

I’ll be sitting at my desk typing, and I’ll pause in my work, and I’ll realize that I don’t have that instinctive sense of where my arms are.

It’s not numbness. It’s deeper than that. A neurological glitch that is nearly impossible to describe to someone who hasn’t experienced it.

Close your eyes. Do you know where your limbs are?

Now imagine that you still have sensation — if you move a limb, or something touches it, you register the sensation normally — but as long as you remain still, the limbs are in limbo; they’re off your brain’s radar. It happens most frequently when I’m sitting at my desk, wrists on my wrist-pad and fingers poised over the keyboard, pausing to think. Movement returns my positional sense, but if I sit still for a few seconds, it’s as if my arms and fingers fade from my brain’s body map.

Sometimes it’s just a distortion of positional sense: my arms and torso might feel very loooong, like Alice’s when she eats the one side of the mushroom. An entirely appropriate literary allusion, if you consider how many drugs are coursing through my body.

But let me tell you, as neuropathy goes, I’ll take the hand I’ve been dealt, quite happily.

So I’m not over my needle phobia after all.

Well the thing is, I got to be okay with having blood drawn over the past month. Even IV needles weren’t bugging me too much. But I’m still getting used to having a port, and it still kind of freaks me out. The port is a small round thingamajig about the size of a stack of quarters that’s implanted under the skin below my collarbone. It has a thin catheter that runs up under the skin and feeds into my jugular vein. This way I have easy access to a major vein and they don’t have to shoot up my arms every time I go for chemo, blood tests, etc.

The port is truly wonderful, but you understand why the whole system is a little freaky if one thinks about it too much.

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