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Marilee J. Layman

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12:20 pm: Cytoxan
So since I had the NeBuPent yesterday, I started the cytoxan today and also started decreasing the prednisone. It would be nice to stop the prednisone because necklaces that used to sit a couple inches under my neck now cut into it, and my glasses make dents in the side of my face. I'm supposed to drink (and then pee) sort of constantly so I'm flushing the cytoxan as soon as it works. The last time I had it, my hair fell out, and that's a common side effect, so maybe we should have a lottery for when it happens.

I just had a very difficult discussion with Lucila. When I cleaned the utility room, I got the microfiber cloths off the shelf and washed them. She uses Pledge on everything and I only have one thing that's actually all wood. The problem with the Pledge is that it makes things slippery, and I sometimes use the furniture to catch myself or not-fall and that doesn't work when it's slippery. She kept saying "just a little Pledge?" and I kept saying no. So she's trying to do without.

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From:(Anonymous)
Date:May 5th, 2009 04:40 pm (UTC)
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Oh dear, that's a lot going on right now, isn't it? I hope you can stop the prednisone and that the hair won't fall out and that the new meds will work.
Good luck also with Lucila. I think I need somebody like her .......
Take good care,
Doris
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From:mjlayman
Date:May 5th, 2009 04:46 pm (UTC)
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Well, the meds are all linked. The cytoxan is to help me stop the prednisone, and the NeBuPent is to keep the cytoxan from letting me get pneumocystis pneumonia. The NeBuPent may give me cancer, but we'll just watch for that.

It would probably work better with Lucila if one of us spoke more of the other's language!
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From:dd_b
Date:May 5th, 2009 05:00 pm (UTC)
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Possible long-term cancer (which might be treatable) certainly rates lower than immediate hard to treat stuff, especially when living long enough for the cancer to become a problem is one of the issues being addressed. Intellectually it's quite clear-cut, straight-forward, etc.

Intellectual distance is a very useful thing sometimes.
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From:mjlayman
Date:May 5th, 2009 05:15 pm (UTC)
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Yep. Particularly when the immediate stuff is my already-damaged brain.

The nurses yesterday commented on how well I was taking all this and I told them what I always tell people who say that: If it would help to be angry and upset, I'd try it, but there's no indication that it would, and I'm naturally a happy person.
From:(Anonymous)
Date:May 6th, 2009 03:52 pm (UTC)
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Happy is better than angry in so many ways. Been there, done that.
Take good care,
Doris
(no subject) - (Anonymous)
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From:mjlayman
Date:May 6th, 2009 06:15 pm (UTC)
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Thanks! Yeah, and everybody except the nephrologist is worried about my lack of calcium & vitamin D. She says just to come on the 15th and we'll talk about it. I may have to see if we can have a conference call instead of me emailing each doctor separately.
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