response 437 of 594:

Aug 18 05:03 UTC 2003

Thank you all for your wishes.  My brother in Boston suggested I get some sort
of power of attorney form to give Jim the right to make medical decisions for
me (and visit in the hospital).  Where do I find one of those?   Jim's brother
is a radiologist.

I have yet another pulled muscle.  I hate lying down.  I am trying to get back
some back muscle strength and now it hurts to sit again.  I seem to be okay
at the office chair in front of the computer that Jim set up for me.  The
board is from JEP and now it does not do random resets.  It did not like its
Cyrix cpu.  It is happy with an Intel MMX.  It also has no Com2 but we don't
use a modem and mouse at the same time.  It has replaced two Compaq 486s with
noisy power supplies that drowned out the radio.  This case (from a 286) also
has a noisy power supply that drowns out the radio.

Jim fixed me up a really nice little room here, with a mattress instead of
a camping map (that was pretty uncomfortable to sleep on, especially with no
body fat) and more than 16" next to the bed.  I have a chair, a lamp (compact
fluorescent so as to heat less, thermometer (so I will know why I am too hot
to use a top sheet, until yesterday), little boombox on the wall.
Armchair out in the bigger room to eat at and play scrabble and I can sit for
an hour at a time in it.  Nice little bucket in a milk crate with a toilet
seat on top of it.  (There is a rainwater flush toilet downstairs but I am
not up to stairs right now).  The stuff they gave me to drink Wed. is still
coming out - it stinks.  Even in my sweat.

During the blackout I had a portable radio with little speakers plugged in.
And a fancy round battery lamp on the wall that you had to push just right.

You need body fat to sleep.  I keep waking up after an hour with a very sore
bottom shoulder.  Any ideas?  We put a thick polyester sleeping bag on the
cotton mattress.

Hope this is amusing for people.  Jim has been awfully nice about dragging
all sorts of gadgets for propping yourself up in bed and bed tables here and
he even somehow carried over the armchair (on his head or his bike?).  My apt
is over a block away.  It is too noisy to sleep there - the upstairs kitchen
is over the downstairs bedroom.

response 439 of 594:

Aug 18 11:31 UTC 2003

Check the web for a "living will", "durable power of attorney" etc.  Because
you and Jim are not married, you may need an attorney to double check that
your family cannot override your wishes if you are not able to make decisions
yourself, like being under the influence of strong narcotics, unconscious,
etc.  A simple form may not be sufficient for your situation.  

response 441 of 594:

Aug 18 11:53 UTC 2003

Also, consider that the most critical issue may not be "which treatment to
give" but whether or not to _withhold_ or withdraw a treatment.  Families can
get downright hostile when one person decides that the doctor's recommendation
to withhold or stop a treatment be followed.  

That happened recently to a friend who was suffering from cancer.  His
family's grief and anger about the cancer got focused on his live-in lover,
who had been there for the 6 months of diagnosis and treatment because his
family lived too far away.  When hospice decisions needed to be made, even
though he was pretty rational, his family displaced a lot of their hostility
about the decisions on the lover.  

response 445 of 594:

Aug 18 22:12 UTC 2003

I'm sorry to hear about that, Sindi.  What hospital are you attending for
treatment?  Cat Scans aren't all that pleasant, but you learn to get used to
them and in the end it's not all that bad.  My dad had to get them every six
weeks, and he would barely mention it if we didn't ask about it.

I know of several people who currently live normal lives following various
lymphomas.  Even more serious cancers, such as what my dad had, are only
obstacles to be overcome.  Good luck.  If you want to read something rather
inspiring, read Lance Armstrong's book.  Consider, when you read it, that he
just won his fifth consecutive Tour de France this year, tying the record.

I hope things go well.

response 447 of 594:

Aug 19 02:00 UTC 2003

Good luck Sindi.  Though I don't know much about the medical issues, if you
have insurance issues, pop me an email since I do a lot of medical billing.

response 449 of 594:

Aug 19 15:26 UTC 2003

Didn't sleep well last night, and somehow also picked up an extremely sore
neck in the process.

response 451 of 594:

Aug 19 17:51 UTC 2003

Dammit.  Back to the can't-go-to-sleep, then can't-wake-up cycle.  I was
really hoping to be through with this.  Especially annoying because I'm
totally exhausted by the time I can call boy, but too tired to make sense,
but can't fall asleep if I hang up either.  Bah.

response 453 of 594:

Aug 19 20:21 UTC 2003

I'd tell you to cocoon in some blankets and the sleeping bag, but it's too
hot.  :(

response 455 of 594:

Aug 19 21:30 UTC 2003

I deal extensively with insurance billing myself (what do you do, exactly,
jiffer?  I'm mostly registration and problem-solving), so let me know if you
have any questions.  Particularly if you attend St. Joe's, Sindi, because I
can tell you who to talk to if I'm not the guy to help.

Then again, my mum could tell you all about the U of M oncology unit, so
there's more resources out there.

People talk about "losing the battle" when someone dies from a disease.  I
find that to be innaccurate--everybody dies, not everybody loses.  My dad won
his battle with cancer, and it wasn't something the doctors could do for
him--it's all about spirit.  Keep yours up, Sindi, and it will do you a world
of good.

response 457 of 594:

Aug 19 23:49 UTC 2003

He's still around.

response 459 of 594:

Aug 20 02:05 UTC 2003

Yikes.