machshefa: (patronus)
[personal profile] machshefa
Hi everybody,

First of all... HUGS.

I'm in awe of this group and the love and power of the community. T is
thrilled and grateful to everybody and asked me to convey her thanks
and to tell you how much it means to her. Also, she does so love
having all the enthusiastic effort sent in her direction -- we giggled
over how much she enjoys that. So nice to see her smile.

I got to spend some time with her last night, both alone and also with
her husband and best friend. The best way to describe the evening is
to say that we talked about Life, the Universe, and Everything. Truly.

We talked about life and death and fate. We talked about guilt and
helplessness and "why me?" We looked at the AWESOME photo album with
her husband and friend (who were blown away by it). Her friend is a
scrapbooker and said something about how hard it was going to be to
top it. :)

We talked about her daughter, and she said that she wanted to be a
writer so that she could express her feelings and thoughts more
articulately. We decided that she would start working on her letters
to her daughter and I would work with her on them so that they
expressed things the way she wished. She was pretty excited about
that. I told her she's way more articulate than she seems to think,
but she just laughed at me. ;)

We talked about what to expect, psychologically, for herself, her
family, and her daughter. When I described what to expect from her
daughter, they all said, "Oh, she's already doing that!" :)

We talked about her uncertainty about how much she'll be able to do
once she gets home, and how overwhelming it is to have her friends
mobilizing around them to take care of her. She really wants to
continue to run her house (even things like laundry), but it's not
clear yet how much she can do. She is sitting and walking around a
bit, so she's hopeful that she'll maintain some good functioning...

I also put on my "pushy friend" hat and told her that there's some
good evidence that certain Traditional Chinese Medicine formulas slow
the growth of Glioblastoma cells. Here, in Chicago, we have a world
class TCM doctor who is also an MD Oncologist. She and her friend were
VERY interested and they are planning to override her husband's
skepticism and consult with him. I just hope he's not in China right
now. *sigh... If she goes today, I'm likely to go with her. She was
all about the personal connection (I've referred roughly a million
people to this guy over the years) and I'm happy to do anything that
makes her feel good about her care.

I am actually incredibly relieved that she's so open to this option.
It would have haunted me forever if I hadn't said anything (despite my
strong aversion to being pushy or intrusive... ack). Usually, people
wait until after conventional Western options are exhausted before
pursuing complimentary medicine and then it's often too little, too
late. She'll be doing radiation first and so including TCM doesn't in
any way interfere with the conventional treatment. It's the best of
both worlds. I really trust Dr. Guo, and if what he knows and can
offer will extend her life even a little bit... *clears throat

Anyway.

I'm sure I'm leaving tons of stuff out...

She looked tired, but good. Her vision is coming back a bit, though
there are random holes in her visual field. She can read text and
emails if they are double-spaced and large font, and she asked that
people who want to text, write, etc., feel free to do so and just fix
the spacing and sizing so it's easier for her to see. She's been
texting and just hopes that auto-correct doesn't change her words to
something ridiculous (she can't see what she's texted, so she goes for
it and hopes it makes sense. :)).

She also used the Peeves hammer on a particularly clueless nurse. The
look on her face when the nurse made particularly clueless/insensitive
comments (erm, perhaps read the chart before you talk to someone as if
they're in the hospital b/c of a minor surgery?) was priceless. We
each picked up the hammer at various points and the nurse left fairly
quickly after that. LOL

I think that's the gist of it all. I've probably forgotten something important.

*hugs and thanks again to everybody for their healing energy and support

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machshefa

January 2012

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