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

Date: 2011-07-22 03:04 pm (UTC)
From: [identity profile] beffeysue.livejournal.com
Thank you for posting these updates. I can take something away from each one and focus my good vibes on it and channel them on to T.

Date: 2011-07-22 03:58 pm (UTC)
From: [identity profile] miamadwyn.livejournal.com
I know someone in NYC who is using Chinese medicine to supplement his cancer therapy and it has evidently been an amazing benefit. I am not familiar enough to know what kind of cancer, what kind of Chinese medicine. All I know is it makes me want to find a Chinese practitioner in Dallas, just on general principle.

Thank you so much for this. Annie and I were talking this morning about the "miraculous" nature of so much that is happening. I mean, how often would somebody have a seizure with an EMT sitting there chatting with them? And how often would somebody away from home receive this kind of devastating news and have a loving psychologist there to ease the way? When these are all people who had never met face to face a few days before?

Yes, it boggles.

Date: 2011-07-22 05:30 pm (UTC)
From: [identity profile] anonymous-plume.livejournal.com
I've read studies about garlic dissolving tumors in some instances.

There have been a number of miracles, which I'm so grateful for. It's been a tremendous blessing for her to have you all there for this. Thank you for another kind update, M.

(also, can you convey the ctrl ++ thing that makes all the words on the computer bigafy so that she won't have to hope people remember to type in big fonts? or even the "zoom" function on her view menu. toolbar. thing.)

Date: 2011-07-22 05:54 pm (UTC)
From: [identity profile] aurette.livejournal.com
These updates really mean a lot to me. Thank you so much for taking the time. T really doesn't know me from Adam, but we have danced around in the same threads, and commented on the same ridiculousness often enough that this has hit me hard. Thank you.

Date: 2011-07-22 06:02 pm (UTC)
From: [identity profile] zauza.livejournal.com
Thank you for the update.

Please let her know that an army of Big, Bad, Ugly Balrogs is being sent to that nurse at this very moment by a very bad-tempered Gryffindor! :)

I'm so glad that she is willing to see Dr. Guo.

Date: 2011-07-22 09:57 pm (UTC)
From: [identity profile] clairvoyant12.livejournal.com
Thanks for the update, M. Westerners have discounted eastern treatments far too long. If it complements traditional western methods and does no harm, there's no good reason to avoid it.

And bless you, dear. My friends and acquaintances who have had cancer had spoke at length about their medical treatments, but they never really had mentioned receiving professional care for their mental and emotional needs. T is lucky to have you as a friend.

*hugs*

Date: 2011-07-22 10:16 pm (UTC)
From: [identity profile] junewilliams7.livejournal.com
Thank you for visiting T, and for updating us. And thank you for picking up the Peeves hammer! That nurse needed some sensitivity training, and you all drew on your Inner Snape.

Date: 2011-07-22 10:26 pm (UTC)
From: [identity profile] m-mcgonagall-65.livejournal.com
Thanks for keeping us in the loop.

Date: 2011-07-23 04:21 am (UTC)
From: [identity profile] tudorpot.livejournal.com
Thanks for the update. It might help Ms T if someone arranged for visual aid software to be installed. There are quite a few programs for posting and reading, text to speech and speech to text. There are also programs to make the screen text size larger- she uses a mac as I do, right now I am using the Universal access tool and it reads to me as I type. It also tells me what pages I go to. There is probably more to this, but I don't know enough.

Re TCM- I think that's a great idea, glad she is open to it. A note of caution though to all, Glioblastoma is a very aggressive cancer that is constantly changing, mutating biologically - that is why a treatment has yet to be found. We all want a miracle, we bargain, we deny - we seek a way out of this nightmare that let us keep Ms T.

Date: 2011-07-23 06:41 am (UTC)
From: [identity profile] sandlappershell.livejournal.com
Thanks for the updates! I have been thinking about y'all a lot and good wishes/prayers for everyone involved... The Chinese medicine is a BRILLIANT idea! I am a firm believer in looking at every viable option and I applaud you on offering T something else to look into! Please give her warm hugs from us here.

Date: 2011-07-23 09:35 am (UTC)
From: [identity profile] ozratbag2.livejournal.com
Anything that allows T to keep her independence, her usual routine (as she's able) is definitely a plus.

The TCM route is well worth taking - Glioblastoma doesn't follow any rules and is different for everyone, which makes it all the harder to manage.

As for the clueless nurse, my teeth are grinding. Surely, listening to handover isn't so difficult, or perhaps she was so speshul (read F.I.G.J.A.M) that listening is something she feels is obsolete. /seethes

F.I.G.J.A.M = Fuck I'm Good - Just Ask Me. :p

Date: 2011-07-23 10:56 pm (UTC)
From: [identity profile] blueartemis07.livejournal.com
Thank you so much for the update!

Date: 2011-07-24 08:52 am (UTC)
From: [identity profile] kittylefish.livejournal.com
i'm happy you are able to be there for her and also that she is open to trying the non-western approach. i hope it is able to help.
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