response 91 of 257:

Sep 1 02:31 UTC 2003

John III thinks you ought to eat, Sindi.  I'm sure he knows all about 
being told to eat things you don't like; he's a kid, and that's part 
of the experience of being young.  He said, "You need to eat when 
you're not feeling well."  I told him I'd pass that on.

I showed him the picture Jim sent to me to have posted on the WWW 
page.  He was glad you have something to do.

I censor the heck out of what I tell him.  You're sick, they're taking 
care of you, you're getting better, and Jim is there to help you.

He and I both wish you well.

Of all the people I know save one, I would have thought *you'd* have 
the easiest time getting along with those who don't speak English!  
Heh.

response 93 of 257:

Sep 1 07:20 UTC 2003

I don't know what Sindi's experience with refined sugar is, but I've found
in the last few years that it makes me feel awful.  In addition, since it's
a source of quick non-lasting energy, it tends to make me hungry again very
quickly.  I can eat a meal without much sugar and be happy for hours, or I
can eat the same meal, followed by a few cookies, and be starving an hour
later.  Generally, unless I'm biking or something like that that is actively
burning lots of calories right at the time, I'm much happier avoiding it.

That said, eating sugar, assuming a constant supply of it, certainly appears
to me to be a good way of gaining weight.  Those of you who knew me several
years ago may remember that I used to drink root beer pretty constantly.  When
I stopped drinking soft drinks, I lost more than 60 pounds in five or six
months.  I assume the wsame would be possible in reverse.

response 95 of 257:

Sep 1 14:41 UTC 2003

i also don't like sugar too much. it makes me feel crap too. this and being
mostly vegetarian also make it hard for me to gain weight. french fries and
pizza are a favorite fatty foods, as well as pasta with rich creamy sauces.

response 97 of 257:

Sep 2 00:28 UTC 2003

Jim did not eat my lunches, he ate what I could not eat.  

They walked me around in a circle yesterday, did it again today without oxygen
tubes in my nose.  The IV rehydration drip disappeared a couple of days ago.
Today I could actually leave the room.  (Also use the bathroom instead of the
'commode' - every time I sat on it someone was sure to come collect a
breakfast tray).  I did a good job walking in circles without oxygen.  I am
stabilized.  The only awful things they did to me today (other than wake me
up to discharge me) were to draw blood while I was trying to sleep at 7 am,
and then shine lights in my eyes at 7:30 and ask how I felt (I felt like I
was trying to sleep).

I have to take a few pills, eat a lot, and try to exercise (meaning walk more
than 5 feet, sit up more - I have to lie down frequently) and I have two weeks
until the next chemo.  Total of 6-8 every 3 weeks.  I will feel better during
the last two weeks of each 3 week cycle.  I will feel less knocked out each
cycle, with luck.  The digestive problems will go away soon I hope.

I am eating Jim's home cooking.  No low-fat anything.  Stewed zucchini and
real cream cheese on whole-grain rye crackers.  I will try to eat ice cream.
He got me the most fatty he could find.

I am home (by the way).  I am about to fall off the chair.  Good night.

response 99 of 257:

Sep 2 02:25 UTC 2003

I am glad you are home

response 103 of 257:

Sep 2 06:10 UTC 2003

lk is a fag.

response 105 of 257:

Sep 2 21:13 UTC 2003

Jim is vegan and does not eat ice cream. He had  ball at Kroger's choosing
ice creams' for their calorie content.  Breyer's French Vanilla - on sale for
$3/half gallon right now.  Jim is keeping track of my calorie intake.  I am
not allowed to eat anything until he measures and calculates it.  Half cup
Breyer's is 80 calories.  Half cup milk is 75.  He added black walnuts from
our tree -60 calories per ounce.   
Breakfast - 1.5 tsp black walnuts 60 calories.  Bless our tre.
Oatmeal (the real stuff with husks that stick on your teeth, not the
predigested 4 oz of the hospital):  1 cup cooked (1.5 oz dry) 160 calories.
(Jim ate three cups of oatmeal).
Two cups milk - 300 calories
Banana (from the hospital, lots of sugar, 2 oz) - 50 calories
Ice cream - 4 oz - 80 calories - on the ice cream

650 calories.  How does this compare with hash browns and bacon?

Cheerios from the hospital are only 2/3 oz dry weight - 60 calories
Shredded wheat - whole 1 oz - 120 calories
They are both whole grain.  The refined stuff is required to put back the
vitamins.  They put additional vitamins in these, also in raisin bran (which
is mostly sugar).  They put oat bran in the cheerios.  Same calories per ounce
as oatmeal but the portions are miniscule.  I gave up on hospital omelets -
terribly salty and probably they left out the egg yolks to be healthy.

Lunch was 'stone soup'.  Yesterday's zucchini in tomato juice with additions
for flavor (I can sort of taste through the thrush which will get better for
two weeks I hope).  Chinese sweet potato noodles, garlic.  Olive oil one tbp
is 120 calories!  It goes in everything from now on.  May try full-fat
no-sugar no thickener yogurt in the next bowl of this for flavor.


SOmeone I translate for is doing radiation for breast cancer.  Someone else
I translate for called this morning (I managed to sit up and talk for 10
minutes without falling over) wanted to let me know her experience with breast
cancer.  She had two mastectomies, radiation, and chemo, and has been fine
since 1996.  The first chemo is the worst - it makes you really tired.  (I
am tired for plenty of other reasons too).  Second is not bad, the last ones
hardly bother you at all.  She does not remember thrush or diarrhea.  She said
she had surgery (I did not not) in October and was all done with treatments
and back to work by February and has felt fine since.

So all I have to do is force-feed, treat thrush four times a day, live with
diarrhea, regain my muscle (my legs feel like someone else's) and try to
forget that I have a tube in my arm with little green things dangling from
it.  I can bend the arm and sleep on it.  Have to saran wrap and tape it to
shower.  

I have room to eat a whole meal at a time now - the spleen tumor is
disintegrating and making space.  I have to take allopurinal (gout medicine)
to help dispose of uric acid from the DNA breakdown this cycle.  Maybe not
the next cycle.  And Prilosec to reduce stomach acid and vitamin pills.  They
wanted me to use their vitamin pills.  I have my own.  Theirs probably cost
$5/each.

The Nystatin for thrush comes in banana or cherry, depending on which
artificial color and flavor you prefer.  Mylanta simethicone for gas (from
beans, bran or brocolli) comes in mint or cherry.  The Nystatin is 33% sucrose
and kills my teeth.  You are supposed to leave it on as long as possibly. 
I do  minutes and rinse off the sugar. The pharmacist said it would taste bad
otherwise without sugar.  The mylanta has dextrates, also sugar that hurts
my teeth, and does not do anything for gas from chemotherapy. It did not claim
to do so.  Cherry candy anyone?  


Jim found a (broken?) stereo system at the curb that plays radio and has a
remote control.  I can lie on my back and change stations (there are two with
classical music) or turn it louder or off.  There are other choices (some for
the presumably broken CD and tape deck).  

How would I use time, sleep, clock, disk direct play, edit/check, prgm,
video/aux, MD (?) karaoke, vocal fader/multiplex, T-bass, GEQ,
direction-preset (perhaps I can preset my two stations?0.  There is also
power.  Turn it off and the lights keep dancing by themselves.

Jim offered me a slide show of a bunch of slides Kiwanis was throwing out,
of Europe (in the sixties?).

I keep being grateful for small things, like no more hospital gown.  They snap
up the back with the snaps directly on your spine, no fun to lie on.  I would
unsnap the back and keep the room uncomfortably warm.  I can warm.  I can wear
real clothing again and sleep under a sheet.  My clothing fits me as if it
were Jim's clothing.  I need to sleep on the futon with the foam in it so I
don't feel my ribs.

Jim's house is full of chairs with level seats and back support, which let
my feet touch the ground.  I had the choice at the hospital of sitting on the
edge of a high mushy bed (getting a back ache) or the commode with a pillow
on top (still too high) so rarely sat at all and ended up lying on my back
all the time and lost my back muscles too.  I am forcing myself to sit as long
as possible (helps to grex) with a pillow behind my lower back.  A few more
minutes every day.   I hate being on my back.  Hospitals are not good for the
health.  They expected you to be lying at max 45 degrees in  bed to eat or
read or anything instead of sitting.

The CD-player is of course not working.  We don't have CDs anyway but Jim'
likes to fix things.

Someone tried to send me flowers.  Not allowed in the hemo-chemo ward as they
can bring in germs.  The 4 year old neighber sent me a drawing of flowers and
butterflies and sun and rainbow and her name printed legibly.  We build stick
houses and things together and every week she has chosen a new career.  She
is very serious.

I get blood drawn Friday (standard tests) and a consultation Sept. 15 and am
free to eat and SLEEP the rest of the time until the next outpatient chemo
infusion.  The stuff is so toxic they put in a special plastic PICC line that
goes into a large vein to diffuse it.  Three chemicals - cytoxin 4 hours,
vincoblastin and something else briefly.  The nurses wear plastic aprons so
it won't burn their skin if it splashes.  I survived it, they tell me much
better than average.  Life will only get better.  Jim may even get the tape
player working.  It works!

Enough back muscle exercise.  I may not have too much else to report for a
while unless people want a running calorie count.  90 pounds and going up.
The person who called and went through chemo said she gained 20 unwanted
pounds and I should eat chicken soup - good for vegetarians.

My taste and appetite are not affected except by the fuzz on my tongue - this
loss of appetite business is either a myth or I am lucky.  Not a bit of
nausea.  Before chemo they gave me a triangular pill to prevent nausea.  I
am terrible at swallowing pills - was lucky with the triangle.  Stupid shape.
Half of my pills stick halfway down and I start coughing.

5 pm - I am not interested in another 650 calories at the moment.  This is
going to be a real chore eating continuously .  I have to clean/brush really
thoroughly after eating so forget snacks.

response 107 of 257:

Sep 2 22:19 UTC 2003

-60 calories?!

response 109 of 257:

Sep 3 00:21 UTC 2003

O< THAT"S H OW SHE GETS -60 calories!  She's eating diohorrheeorrea inducers.

response 111 of 257:

Sep 3 01:56 UTC 2003

Sindi, your new stereo sounds like an Aiwa (right down to the dead
CD player).  There is a little button on the front of Aiwas called
"demo" that turns the attract mode off.

response 113 of 257:

Sep 3 03:02 UTC 2003

Yes it is an Aiwa. Jim just hit the 'demo' button and all the colored lights
went off, just in time to go to sleep in the dark.  Thanks.  Is/was this an
expensive model before the CD player died?  It sounds good and can tune
Toledo.  It wants Jim to set the time now.  

I ate 1910 calories, probably enough to gain weight considering my activity
level.  I am working hard at being able to sit up longer as I am sick of lying
on  my back, but I run out of energy as well as muscle strength.

Just let my brother know I was in and out of hospital.  I did not hear fro
him again after letting him know my diagnosis except he gave me his cell phone
number and vacation schedule.  I have to get Jim signed up for medical power
of attorney real soon.

I am an idiot to stay up this late  (``11 pm) but no garbage trucks tomorrow
and no blood draw at 7 or breakfast tray at 7:30.

Jim needs to open up the living room futon to a bed and then goodnight.