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.

response 117 of 257:

Sep 3 12:43 UTC 2003

Re #116: I doubt it, actually.  If they'd been able to find a way to
avoid it, they would have.  Killing your customers is bad for business.

response 119 of 257:

Sep 3 13:14 UTC 2003

Sindi, I'm really glad you're out of the hospital.  (Not half so glad as you
are, I know.)

Which two stations did you mean?  Where you are, you should probably be able
to get WKAR (90.5) & CBC (89.9) as well as WGTE, which you referred to.  (Or
were those the two, and your other equipment won't get WGTE?)

response 121 of 257:

Sep 3 19:30 UTC 2003

get well soon and get cured.

response 123 of 257:

Sep 4 00:31 UTC 2003

Even stupider to make all the vegetarian food full of hot pepper so people
won't add salt. I have never heard of a vegetarian (except a recent convert)
with high blood pressure.

Many thanks to all for your good wishes.  Grex is something for me to look
forward to every day, and it is great for my back muscles now that I am making
myself sit at the computer (on a very padded surface).

I am getting all three classical stations but they sometimes fade out.  Cheap
antenna.  I seem to be part of the antenna.  It even works in stereo.  This
is great music week - Telemann, Vivaldi, Dvorak, Mozart, Beethoven.  I have
been swishing my vile thrush treatment to music, for distraction.

Today I was not woken until the hospital called to let me know that no, I was
not supposed to wander into the hospital Friday and let them take blood with
a needle, I was supposed to go to the cancer center to use the PICC line, wait
for results, get the dressing changed, and see if my hemoglobin count had
fallen (which would require a transfusion).  I feel okay.

I was supposed to have had a home visiting nurse yesterday to teach me (Jim
actually, I can't do it with one hand) to flush the picks (little green things
where the needles go in) on the PICC catheter.  Today they called to set it
up.  Then n a company called to report they were delivering flushing supplies
at 4 (they came at 3:15).  A huge box with lots of paper stuff, months worth
of blunt needles and heparin solution to put in every day to keep the lines
open.  A big pink thing to put the used needles in.  Tape to go over the Saran
wrap on the PICC line when I shower.  Jim saw the rest.

I get 20 home visits from my insurance each calendar year.  Next week she will
teach Jim to change the dressing and I don't need her again but can ask her
to come.  This is a very experienced hospital nurse who switched to visting
nurse two months ago as her husband has a bad heart and she can arrange her
schedule around him.  He needs a transplant.  I am lucky.  He is only 40. 
They have kids 9 and 10.

One of the translation companies where someone currently has breast cancer
and is doing radiation is sending me a surprise package which is not a
chocolate cake.

The autistic four year old from next door (his parents are both nurses and
will keep an eye on me while I am Jim's house) wants me to go upstairs to see
the red light he just put in.  Next week.

Jim's friend and previous neighbor from 25 years ago, who started his own
company and sold it for a lot of money, asked me to list "all" the foods I
like and he will bring a basket.  I have probably disappointed him by asking
for bread, cheese, cider and dried pears instead of chocolates and creamed
herring and everything else from the deli.

Jim brought in his first fallen grapes and pears (what the animals left).

Got to rest my back.  I am eating real salad (a whole tomato and cucumber
instead of two slices of tomato).

Bye for today.  Thanks to all.  Baroque music!