response 225 of 257:

Sep 20 15:53 UTC 2003

Jim is still trying to fix the AIWA.  He replaced the CD mechanism with what
he thinks is a good one from another machine but it still would not spin after
putting in the CD.  (It spins without any CDs).  I think it is an electronic
problem and have asked him to put it back together so I can use the remote
control on it again instead of fiddling with the SONY dial tuner (where the
CD player does work).   We also have about 5-10 tape decks that it would be
nice to give up on to make space - won't run out of things to do while we are
both stuck at Jim's house.  (Then there is the mess upstairs and downstairs
once I can manage stairs).  I am already getting a bit tired of reading all
the time.

response 227 of 257:

Sep 20 18:56 UTC 2003

I don't think I have the stamina to read medical articles yet (I do a lot of
such research normally as I am a science translator, including medicine) but
will check out the google groups link at your site, for which many thanks.
Chemotherapy seems to still be as much an art as a science.

Today I walked twice as far as yesterday and did not nap, despite a sore
throat which I hope clears up before my immunity drops in a few days.  Jim
is off picking up more food and some warm clothing from my apartment and then
I will attempt to take a hot bath (sitting on and against lots of padding).

The hospital charges came today (to be discounted slightly by PPOM). 
Previously charges for blood tests, CAT scan and spleen biopsy total about
$8,000, and there will be a charges for a few more blood tests and doctors'
visits and chemotherapy in a private room with a bed (another $2000?).l

Hospital Inpatient Bill 
Admitted 08/23/03, Discharged 09/01/03 (Labor Day)

Daily Room Charges

Semi  3 days at 872                             2616
Private 6 days at 872                           5232
(no extra charge for private room if you are a cancer patient since they are
all private rooms because of the risk of infection due to low immunity)

Ancillary charges (procedures, tests, materials......)

pharmacy                                2795
drugs used with radiation                292
medical-surgical supplies               1140
sterile supplies                          71
laboratory                              8534
pathology laboratory                    2164
 diagnostic x-ray                        934
nuclear medicine                         932
cat scan                                1201
operating room/treatment rm/other       1384
blood storage processing                1089
imaging services                        1434
respiratory services                    1210
pulmonary function                      2410
 other diagnostic services               554

Total hospital charges              33,992 (plus change)

I have not quite succeeded in matching this up to what happened but
it is something like:

drugs - antibiotics and chemotherapy and saline/bicarbonate solution
drugs - antinausea pills used with chemotherapy?
(no charge for the vitamins, for some reason)
IVs and PICC line
dressings for above
analyzing all the samples of fluid and bone (lung drainage, biopsy)
X-ray of lung fluid, PICC line (maybe a few others, I lost count)
nuclear medicine - the MUGS scan (which involved radioactivity)
CAT scan - of chest
operating room .... the bone biopsy and lung fluid drainages?
blood storage processing - 3 units of blood as two transfusions
imaging services - the ultrasound that sounds like whale cals
respiratory services - the oxygen tube to my nose
pulmonary function - ? was this the fluid drainage (twice)
other diagnostic services - the blood draws?

This totals about $40,000 so far not counting a few more blood draws
done outpatient and the second chemotherapy session.  It will cost me only
$6500 plus maybe $100 for the drugs from K-mart (prednisone, allopurinol) and
mail-ordered (Prilosec) and the OTC things (antifungal, vitamins).  Not
counting the fact that I cannot work for a while and Jim is home taking care
of me.  I wonder how other people manage to support themselves while sick.
I have money to live on because my parents both died (my mother in 1990) of
cancer and I inherited half of what they had saved.  (I would rather have had
parents, of course).  A friend without insurance is filing for bankruptcy
rather than selling his house to pay for heart surgery (only about $40,000).

Maybe another $10,000 for four more chemo sessions and who knows what it will
cost me over the next ten-twenty years for annual CAT scans or whatever they
will be doing as followup.  Eventually Medicare will start paying something.

And the home nurse visit was $130 and that package of dressings could have
been another $100 or more.  I am saving the insurance company a bundle by not
going into a nursing home for a couple of weeks after discharge from hospital,
so maybe they won't object to paying for the mattress pad.  The nurse herself
got $20/hour for maybe two hours of her time, the $130 being a minimum charge
by the operation itself.

response 229 of 257:

Sep 20 19:38 UTC 2003

I found an interesting article about another (new, animal-tested only)
monoclonal antibody which when used together with Rituxan doubles the
remission time and cure rate.  It binds to proliferating b-cell or t-cells
which are mhc class II positive (probably they display some protein on their
surfaces) and can kill them even if your immune system is not doing well. 
I hope I don't need this drug 7 years from now but iut is nice to know they
are working on new drugs.  At the google groups link, thanks again.

response 231 of 257:

Sep 21 13:04 UTC 2003

Thanks.  Looks like I will be meeting my deductible every year at that rate
- $5000 for CAT scans and who knows what for the doctor.  How many years does
the 2x/year continue?

response 233 of 257:

Sep 21 13:36 UTC 2003

        *their argument*:  insurance companys pay near 100% of the time.
The un-insured pay at a much lower rate.
        Well,duh!

response 235 of 257:

Sep 21 22:19 UTC 2003

Jim went to special trouble to get low-sodium sprouted grain (and lentil)
bread which I cannot eat because it sticks between my teeth and I am supposed
to stop flossing soon to avoid bleeding.  I don't need low sodium this week,
I need mush.  Whatever I eat hurts my tongue and mouth and teeth.  I had to
give him back his crunchy brocolli and dried mushroom soup and eat baked
peeled red peppers instead.  (He got two enormous bags of them at market and
is baking, peeling, and freezing them as treats over the winter).  In
Macedonia at this time of year everyone is busy baking peppers and putting
tomatoes in jars and pickling beets so they will have winter vegetables.  They
bake the peppers over large metal pans (wood-burning?) outside and it smells
wonderful, as does Jim's kitchen.  He is also peeling, slicing, and drying
pears from the orchard.  I am not helping, my hands are shaking too much and
I don't dare cut myself.  I might try to peel cooled peppers later.

We also bought some commercial preserved red peppers in the form of 'ayvar'
which is ground up red pepper and eggplant and sometimes tomato and garlic
and other spices.  From Jerusalem Market.

I fell asleep three times today.  The prednisone wore off.  Last night I got
woken at the familiar hours of midnight and four am but not by blood pressure
readings - some large and very noisy truck running just across the street for
half an hour each time.  A mystery.  

I also lost the fluid gain and am still at 99 pounds.  This is probably the
week where people claim to lose their appetite.  Food not only hurts, I can't
taste through the fuzz.  But I don't think I have lost my appetite.  I am
eating less often because whenever I eat I need to brush, floss carefully,
rinse my mouth with warm saltwater, and it takes too much energy.

response 237 of 257:

Sep 22 13:09 UTC 2003

You are welcome to the 16 oz of my next one.  I smelled like it for 10 days
afterwards as it comes out in sweat.

No trucks last night but my runny nose kept me awake a lot.  Can anyone who
has had a cold recently tell me how long the runny nose stage is expected to
last when you have an immune system?  I won't have one by Thursday.  Jim is
still at the stuffy sinus stage - I caught it from him.  He says he is tired.

Today I looked at my tongue after brushing the white slime off my teeth.  My
tongue is yellow like the Nystatin antifungal solution I have had to start
using again.  Pretty persistent dyes but it seems to help some.

response 239 of 257:

Sep 22 17:46 UTC 2003

My platelet count also seems to be down (along with neutrophils).  I will
switch to toilet paper for my nose too and not blow too hard rather than
washing out the cloth handkerchiefs.

Jim is also napping.  I seem to have a double whammy on the tiredness this
week but my nose has slowed down a bit.

We were going to have a big excursion today to the local branch library and
the bank and Kroger (Jim might leave me at the library) but I will wait for
dryer weather.  I am doing my hiking in the house instead, feeling sort of
like a caged lion.  It is about 25 feet from one end to the other if you avoid
the furniture along the walls.  In my part of town a block is 300 feet, or
6 house-lengths.  I am walking 'one block' several times a day with no need
to lie down every 50 feet (or use a walker) and then doing some very shallow
knee bends.  Also stretching and leg lifts.  Jim's block is about twice as
long and I have been to both corners and back on the same day - 24
house-lengths at a time - but it is not as level as his floor.

As you might guess, I am getting a bit bored lying in bed reading.

Jim heard somewhere that it averages 10 city blocks to a mile - is this
correct for New York City, he asks.

The dried pears were cut so thin that they are like pear chips.  They came
out much sweeter than the pears.  The AIWA is now in pieces in two rooms. 
It is about 90% air and the rest contains an enormous transformer and heat
sink.  We could probably use it for the next block party and be heard a few
blocks away.  The speakers (at our one-room volume) don't sound as good as
some smaller older ones in the SONY.  They can probably take more overheating.

Jim wants me to start climbing stairs.  I can do three with help.  He has an
exercise bike in the basement that he was going to convert so that he could
use it to grind flour (with the hand-cranked flour grinder).  I wonder if I
can set that low enough to use it.  (Not that I can make it to the basement
or that there is space for it upstairs, of course).  We have a very highly
padded bike seat (from JEP, who discoverd that a lightly padded skinny one
was more suitable for real biking).  I run out of breath quickly.

response 241 of 257:

Sep 22 18:29 UTC 2003

New York City (Manhattan) has 10 city blocks to a mile east-west (between
Avenues) and 20 city block to the mile north-south (between Streets). As a
New Yorker, I usually think of the 20 blocks/mile figure, as there are
many more such blocks (and you can walk much further north-south than
east-west).

response 243 of 257:

Sep 22 22:55 UTC 2003

You're welcome!

response 245 of 257:

Sep 23 15:40 UTC 2003

Sindi's picture with the flowers is at:

http://jep.tonster.com/photoalbum/friends/sflowers

Sorry it took a while, Sindi; I was on vacation last week.  It looks 
like you're doing better, which is terrific news!

response 247 of 257:

Sep 23 19:21 UTC 2003

Thanks for posting the photo.  I don't know how you can tell how I was doing
in the first photo (of the back of my head in the hospital) but yes I am
feeling much better.  The flowers are also still doing well other than the
roses being past their prime.  Jim's two rosebushes each have a few 'last
roses of summer'.  Did fall start today?

We went on our big adventure to the bank and library, where I walked
tremendous distances alone through two parking lots and then around the
bookshelves and sat in a somewhat padded chair for two long.  I had the list
of book recommendations ready to go but ended up choosing paperbacks by people
whose names I recommended that were shelved above waist height to avoid having
to stoop (hard to get back up) or bend (made me dizzy):

The African Queen (the book)
Forsyte Saga
Barchester Towers
Wives and Daughters
Where Angels Fear to Tread
Buddenbrooks
One hundred years of solitude
Restoration of the Great Lakes:  promise
Why a painting is like a pizza.

Does anyone want to try identifying the authors of all but the last two?
The painting book is about how to understand modern art.

I also got some videos:  The lathe of heaven, A life less ordinary, Hester
Street, The Lady Eve, It Happened One night, Harvey (I have seen the last
three - may as well get something known good).

Jim went off to Kroger's and I amused myself watching people walk in and out
of the library.  In the morning it seems to be primarly retired men and young
women with small children.  Busy library.

For an added treat we stopped at the Dollar Store on Liberty and discovered
their stereo cables were only $1.  Kiwanis was charging $2 for used ones. 
They have a small hardware section, vitamins, toothbrushes, and two aisles
of food.  We got dried apricots and a jar of red peppers and hominy grits.
It was all 1 or 2 or 3 for $1 including things marked 99 cents on the bag.
Off-brand pop-tarts, jam from the Czech republic.  Plus the usual candles and
halloween decorations.  I am sure to have sore muscles tomorrow having hiked
for over half an hour.
My cold is much better.

response 249 of 257:

Sep 24 16:23 UTC 2003

Those numbers can't be pulse rates. Are they blood  pressures? 160 is
dangerously high.