Daisypath Anniversary tickers

Daisypath Anniversary tickers

Tuesday, July 28, 2009

Still Kickin'

Thanks for the recent emails and calls, wondering where I am... I didn't realize it has been so long since I posted. I appreciate everyone's concern. It's hard to stay in touch when I'm feeling low, so I appreciate when you reach out... it was good to hear from everyone. I'll try to catch up with individual replies soon!

I'm OK. Not great, but OK. The first couple of weeks on Taxol I felt like I'd been hit by a Mac truck and I got pretty discouraged and frustrated trying to deal with the pain.

The script pain meds they gave me for the pain knock me out but I take them at night so I can sleep... and it's a good, restful sleep, not a drugged-up groggy sleep, so that part works out well. For during the day, I've come up with my own plan: as much walking as my body will let me do (which isn't a lot, but moving and being out in nature feels good, no matter how short a distance or how slowly I move!), plus a bit of stretching and a bit of yoga. Meditation, too, when I can do that.

Sitting is the worst thing for the pain so work aggravates it but as soon as I get off, I start moving around, meditating, etc.

Seems to be doing the trick. This third treatment was much more tolerable, with the pain kept down to a bearable level.

The bad news is (hey, there had to be a flip side -- every time I start to get up, I get clobbered by that durn 2x4 again!) :) neuropathy is rearing its very ugly head. This is one of the side effects I've been dreading the most. I'm taking large doses of B6, B12, and l-glutamine -- no definitive evidence that any of those help, but there is some evidence that they may help, and they won't hurt. And of course I'm avoiding the things that can make neuropathy worse.

And I'm thinking lots of positive thoughts! (thanks, friend!)

Most people will recover from neuropathy within a few months of discontinuing chemo, but it's not unusual for it to last several months or years. In rare cases it's permanent. I know one woman, a PhD, who is facing permanent disability because she can't work in her field -- or much of any field. What do you do when your fine motor skills are gone? I can't imagine not being able to type, knit, button buttons, turn a key in a lock, sign my name... but these are all things that happen with neuropathy. They happened to mom (but not from Taxol); fortunately, by the time her neuropathy appeared, she was done with the chemo that was causing it. And because she was done with that chemo, her body was able to start healing immediately.

Fatigue is with me but my afternoon naps (1-3 hours!) and a long night's sleep keep me doing pretty well with that. I wear out easily but I also can function without feeling like I'm moving through molasses all the time. I actually had a couple of hours Friday where I just felt -- almost normal! It was amazing! It's good to be able to enjoy activities, being out and moving around, etc.; it's nice to just chat with someone without it draining me of what little I have.

Of course, the chemo caught up with me Saturday and I slept a lot over the weekend, but it was OK.

Now to just get rid of this tingling in my fingers.

I have 9 more treatments to go. I'm being monitored closely.

On with the show!

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