How do I define how tired I've been feeling?
Perhaps the best way is to say that when I came across this disgusting abandoned mattress yesterday morning a few blocks from my house, it looked kind of tempting.
There were times yesterday at work where I seriously considered laying my head down on my desk and resting for a while. When my coworkers ask my how I am, I say "Tired" and they nod knowingly. They're not surprised. I am. Being tired is the antithesis of my normal state.
The fatigue does indeed appear to be doing what I was told it would do - it's accumulating. I don't wake up in the morning having any more energy than I did the night before when I went to bed. I am tired all the time. Last night and this morning I was going to visit with friends, but had to cancel. All I want to do is sit in my Lay-Z-Bum chair and do things that require little effort.
*******
I had a room to myself this morning, when I got my 7th of 12 Taxol chemotherapy treatments. No little old lady roommate chasing my yarn balls and scaring the heck out of me.
The spouse and I got nifty new little Canon cameras, which take much better photos than the crappy camera on my beat-up cell phone.
I am so happy about the stubble. It makes me smile whenever I think about it. Its growth indicates this strange trip isn't eternal. My hair loss is not permanent. There's now a hint of normality in my life. Just a hint. Everything else is still whacko.
Granted, it'll be a long time before my hair's at a length I would call decent. But when I rub my hand over my head, it feels like my body's saying "Enough of this bullshit. Up next, those hag hairs on your chinny-chin-chin."
My nurse brought me my pre-chemo meds about a half hour after sticking the big-ass needle in my chest port and robbing me of some blood. She left and I was a bored, so I decided to pretend the empty med cup was a monocle.
I think I look a little like Colonel Clink.
My nurse eventually hooked me up to the chemo, and I sat and listened to Ray Bradbury stories while I started a new afghan for my husband.
After a while, I had to go to the bathroom. I got our of the bed, moved the IV stand as close as it would get to the bathroom and not be unplugged, undid all the ways my IV was attached to me (other than the needle), and barely reached into the bathroom. I was able to sit on the edge of the toilet with just enough of my butt hanging over the bowl. I couldn't shut the door because it would cut off the IV's flow and the alarms would start ringing.
Later, when my nurse was unhooking me from everything, I told her about this adventure. "You didn't unplug it?" she asked. Apparently the IV machine has batteries for just such an occasion.
Now I know.
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One of the side effects of Taxol is neuropathy. When I go in for treatment or an exam, I'm always asked if I have any signs of it. My fingers and toes do on occasion tingle. Last night my "jimmy leg" was very bad. My nurse told me that this is part of the neuropathy.
I take L-Glutamine three times a day. According to the Naturopath, my Oncologist and the RNs, it's supposed to help. Since I've been taking the Glutamine from the first day of Taxol, I have to way of knowing if it's helping. I'm not going to stop taking it, to experiment.
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I asked my RN if the chest port will be removed between my last chemo and my first radiation therapy. She said it's up to me. She told me that some people keep it in during radiation therapy because they don't like traditional blood draws out of their arm veins.
I am always interested in hearing what other patients do or how they respond to similar experiences. Today when I was leaving the Infusion Center, there was a bald woman in the waiting area, not doing anything to cover her head. I liked that.
Perhaps now that my hair's growing back, I'll be more comfortable being bald out in public. I resent looking like a freak, but now that the end is in sight, I'm more inclined to be okay with my freakdom.
If I had the energy, I'd do a little dance.
I will have this piece of equipment removed from under my skin the first moment I can.
*******
I've been thinking about ceremonies and parties.
I'd like to do something for the artists who did henna tattoos on my bald head.
I'd like to celebrate getting the chest port out.
I'd like to do something special when chemo's over.
I'd like to do something to mark the end of the poison, when radiation therapy's over.
I'd like to do something special when my hair's an inch long.
I'd wonder what a kind of party to have when my groinicological hair returns. Probably a private party.
And how shall I mark my first bicycle ride, which will no doubt be pitiful? A pity party.
*******
It's odd to be optimistic.
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