Saturday, April 01, 2006

Rash Update

The rash is still there and spreading slightly, but it does seem to respond to the steroids and benadryl - the redness goes away in my face and the rash gets better on my arms and legs. I have much more energy and a more normal appetite. The steroid will probably also contribute to that as well. I can see why athletes like these so much. Most of the scalp and other itching has gone away. One of my feet was really sore from being on "my dogs" for so much of yesterday. Better wear my "crocs" today.

(By the way, if you don't know, crocs are the most wonderful shoes - take this from a woman with bunions. And great retail therapy. After getting bad news from the oncologist on two occasions, I went immediately to the mall and bought crocs which really helped deal with devastating information. I have an orange and pink pair, and hope to get blue, green, and red on my next trips. We reserve crocs for the bad news days, so if I have any luck, orange and pink are all I'll ever have.)

I asked my doctor to take blood on Thursday which is rare for me because I hate needles and having blood drawn. Everything looked normal with the liver enzymes. He did want to check a a tumor marker which was elevated in February, but we didn't have that result yesterday.

So for now, I get to continue with the sorafenib. I am studying blogs of other cholangiocarcinoma patients to see what chemo is working for them, because if the sorafenib doesn't work out, that will be the next option most likely.

I have another scheduled monitoring check-up next Tuesday for the clinical trial. This will be with my local GP. My next CT scan is mid-May.

I worked a good 12 hours yesterday, as I had so much energy. I did two hours of bookkeeping for the bookstore at home, and then our employee called in sick so I did ten hours in the bookstore and got a lot done. (This is the first time this employee has called in sick in 5 years.) I hope he can make it in today becaue I woke up about 3am and when I couldn't go back to sleep, I got on the internet to catch up with everyone. I know I'm gonna need a nap later on.

Tomorrow, I'll do my oldies radio show on KURA-LP. 98.9 from 1pm - 4pm MDT. (Don't forget to set your clocks forward.) I cover the 40's - 50's in the first hour, the 60's in the second hour, and the 70's in the third hour. I may even do an extra hour as the girl with the 80's hour right after my show may be gone tomorrow. Sometimes I play songs about how I feel about having cancer, like the Beatles "I Feel Fine" or "Getting Better". Or Tony Bennett's, I Left My Heart in San Francisco, to which I like to sing, "I left half my liver in Denver, Colorado." Or Sly & the Family Stone's "I Want to Take You Higher" only I sing "Don't Ya Wanna Live Longer" instead of "Don't You Want to Get Higher". And so on. Tomorrow, I think I'll do Jefferson Airplane's "Go Ask Alice" and sing "one pill gives you diarrhea, and the next one constipation."

Okay, enough of that.

More later, Caroline

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