Saturday, December 22, 2012

The Demon Alcohol

Shiva and Avalokiteshvara don't seem to be
on speaking terms. Do you know which is which?
I think I haven't felt well, possibly, because I drank a glass of wine last Friday. I sometimes get ill a few days after I drink alcohol (no matter how little or what kind.) Gravely voice, my mouth totally parched, very thirsty, and completely knackered. I slept until 2pm and feel better. Might be time to get back to my three-things-a-day rule. I haven't been resting enough.

Many errands yesterday. Got my eyebrows - they were starting to resemble caterpillars - waxed, which was astonishingly painful. Tried to get my car looked at (emissions light on but not blinking, probably not a big deal). Also went to Kaiser to get my records forwarded to Dr. Block in Chicago. I figure if I do a phone consultation with him, I'll want to do it soon after I get back from Bali. There is also a 17-page questionnaire to fill out.

I asked the Patient Advocate what benefit I might be able to expect from doing a consultation with Dr. Block:
1.700 year old camel
The benefit from doing all the paperwork is that it gives us the entire picture of what you have been through and also they can make recommendations for things you haven't had yet that may work. If you do a phone consult, Dr. Block talks about many things like conventional considerations, off label considerations, suggestions for different monitoring, scanning, labs, and molecular testing. He also talks about integrative treatment options, overseas and experimental considerations, and recommendations for supplements, physical care components, and other things as well.  
People come from all over the world to get advice, and learn about different supplements, treatment options etc. They take this information and some continue to do treatment locally. Others come back and forth. Whatever works best for you, works for us :)
So that seems all right. I don't know where the line is is between realistic optimism and chasing down snake oil. Or, put another way, accepting death without being resigned to it. Where is the point at which a plummeting quality of life becomes not worth living? At what point does the search for medicine become a distraction? I have no answers.

I know I'm supposed to be optimistic, but I am not. I also do not believe it changes anything. After all, when I was first diagnosed, I was not hopeful, and yet I had a complete response to treatment. Then I was pretty pretty optimistic when the lung mets were found, but that ended up being groundless. However, should everything change, that would be fine. I can't bring myself to count on it. It's better for me to prepare for death, then all the life and love that happens is a bonus.

Photos are from the Asian Art Museum.

I am at the Westin Saint Francis on Union Square with Julie and 13 teenaged girls, for Morgan's 16th birthday. 

1 comment:

  1. So in the end you think it wasn't a cold? Also good picture of ole' Floppy Humps--he looked so crabby...