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| Author |
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| 25 new of 257 responses total. |
jep
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response 41 of 257:
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Aug 26 03:09 UTC 2003 |
Thanks for the update, Sindi. There are a lot of people here who care
about you. I was going to call Jim if I didn't hear something pretty
soon.
It sounds like they're intent on starving you. Can Jim bring you
food?
Klg's response in resp:39 describes his previous experience with
chemotherapy and provides what appears to me to be positive advice.
You might want to read that one.
Let me know if you want visitors. Are you in U-M hospital, or St.
Joe's?
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slynne
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response 42 of 257:
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Aug 26 16:03 UTC 2003 |
I am sorry to hear that you are in the hospital. Everyone I have ever
known who had to stay in the hospital complained about how hard it was
to sleep. My father said that the last time he was in the hospital,
they charged extra for cable TV but allowed patients to watch certain
free videos that had health information. Anyhow, his roommate just kept
watching the breast feeding instruction video over and over. Hahaha.
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keesan
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response 43 of 257:
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Aug 26 16:50 UTC 2003 |
U of M. How do I read 39 whenI have klg ignored?
Yesterday lots of blood samples, a CT scan at 9:30 pm (don't eat or drink
first), told I would have a bronchiospy so don't eat after midnight,
transfusion 1:30 to 4:30 am (don't sleep), blood withdrawal at 7:00 am, don't
eat, nurses think I have bronchiosopy, doctors don't, got breakfast, called
away to a MUGA heart scan for an hour (on my back, nothing to drink, started
breakfast around 11, lunch came at noon. Veg. stew consisting mainly of hot
peppers. Jim ate it. They will try for plain veg soup or a cheese sandwish.
Real hole wheat bread. How do I gain weight when Ican't eat supper and then
can'teat after mignight?
They are waiting for a bed in chemo.
I am taking some drugs bought genericat kmart 10 dollars for a monthsupply.
The general price is $7 each at kmart and probably triple that here.
I just got pizza. It looks bland.
,
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goose
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response 44 of 257:
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Aug 26 18:22 UTC 2003 |
Can you talk to the nutritionist? You've got some pretty specific dietary
requrements and talking directly with them might help.
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goose
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response 45 of 257:
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Aug 26 18:24 UTC 2003 |
This is klg's #39:
==================================
re: "#35 (senna): Sindi, make sure you read all your bills"
Good advice, normally. But impractical. First, because there are so
many. Second, because reading bills is the last thing someone
undergoing treatment would have interest in.
Bone marrow biop. Boy, that sure was fun!! Too bad the sedative didn't
kick in.
Had a thoracentesis, too, a couple days before chemo started. Looked
like Old Faithful.
Important to eat a lot - especially fattening foods. Lost sense of
taste and desire to eat. Dropped from 178# to about 152#. There are
books of what to eat when you don't feel like eating and there are
nutritional supplements, neither of which were especially appealling.
A month after chemo started developed a blod clot in r. calf. Probably
due to inactivity. (Never felt so tired. Even sleeping 12 + hrs./day.)
Spent New Year's Eve in the hosp. Confined to bed with a heparin drip.
Ask the dr. about starting on blood thinners now.
Suggestion: Cut your hair real short. Wasn't fun to have most of my
hair circling the shower drain. (Took about 2 cycles before it fell
out, though, and never lost it all.) One bonus, some hair grew back on
top of head where there wasn't any before the chemo.
Are you reading this or are you still blocking my responses??
=====
end of #39
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gull
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response 46 of 257:
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Aug 27 01:17 UTC 2003 |
I think this shows the dangers of using a twit filter.
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klga
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response 47 of 257:
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Aug 27 02:26 UTC 2003 |
First chemo (Day after Thanksgiving, 2001)
Arrived @ hosp 6 a.m.
Checked into patient room.
Bone marrow biopsy.
Chemo Treatment- C.H.O.P. & Retuxan. Infusion rate set very slow to
monitor for reactions. Only problem was a feverish feeling - which
caused nurses to slow the drip even more. Had all meals in bed.
Discharged to home at approx. midnite.
Next day felt pretty good - no nausea or anything. Thought "this is
going to be a piece of cake." (Hah!) Only 5 more tx left to go (@ 3 wk
intervals).
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senna
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response 48 of 257:
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Aug 27 02:30 UTC 2003 |
Reading bills may be a hassle, but getting billed for things you aren't liable
for is worse. Trust me, I've seen it. You don't have to check them all line
by line, but make sure you know what they're billing you for.
My mother describes herself as the only person who has ever kissed the floor
of the U of M hospital, thankful to finally be back with her husband.
Apparently, the hospital they used in Miami was somewhat unimpressive--be
thankful you live in Washtenaw County, one of the best places to get sick in
the United States.
Well, thankfullness is probably not on your short list, but hang in there.
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gelinas
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response 49 of 257:
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Aug 27 02:47 UTC 2003 |
(I am impressed; klg got a new login for this item. Good job!)
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keesan
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response 50 of 257:
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Aug 27 03:55 UTC 2003 |
typing with one hand. transfusion until 430 this am. just started chemo feel
okay, they promised i can sleep 1-430 5 to 8, i am losing my vocabulary.
ct scan, xrays, muga scan of herat. ct contrast solution iis banana or berry.
i passed. bone marrow no wose than fluid drainage and done in daytime.
klg how long is a cycle how many cycles they only told me abourt today. have
not washed hair for a month may not bother now.
got a piccone less iv. one each arm how to sleep?
feeling much stronger can breathe. jim is eating lots of hot sauce and sugar
for me. the will try two weight gain milkshakes one from gfs. if i wre not
taken away whenever supper arrived i woud eat more. sleep blessed sleep.
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cross
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response 51 of 257:
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Aug 27 19:28 UTC 2003 |
This response has been erased.
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senna
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response 52 of 257:
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Aug 27 20:36 UTC 2003 |
Depends on what chemo you're on, Sindi. My dad started on chemos that were
every three weeks. At one point he had an arrangement where he was on two
different three-week cycles, meaning he was in two weeks to receive different
chemos and not in one week for every cycle. As he progressed through chemos
(My dad never repeated a chemo he stopped using, Dan, and it was never
considered, so I think they didn't want to try an old one again). Later, he
switched to a chemo that he took every week, and there were one or two that
he actually took by pill. That was further along, though, and you will
hopefully never have to deal with that.
Who's your primary oncologist?
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keesan
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response 53 of 257:
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Aug 28 00:43 UTC 2003 |
Krizanowski? I don't ask what they are doing. I am trying every spare moment
to get some sleep. Got 3 hours at night and twice 1/2 today.
Summary of recent events.
I am very busy here. Supper came at 5:30 and they said I had to change
rooms by 6:30 last night Jim packed up supper. I had a PICC catheter put
it (little plastic thing to take blood etc in and out of) and then at 9:30
I ate two bites of supper and was taken to X-ray to be sure it went in
right. From 10 to 11 pm I could eat supper than they did chemo until 2 pm
while Jim kept me company. I stayed awake to be sure no reactions to 3
chemicals. Went well. At 2 pm they said I needed 2 units more
transfusion which went from 3 am to 7 am. I managed to sleep a bit. They
woke me every four hours for taking pressure and oxygen and temperature.
The medical student woke me at 7:30 along with breakfast. Oxygen too low,
put on a mask The new nurse gave me the mask and went away. I buzzed. No
idea how to put it on and no air through it. The old nurse put it on. I
begged for an hour of sleep and every half hour someone came to wake me
up. Social worker, floor cleaner, snack. I had a do not disturb sign on
the door. At 1:20 the med student told me I need more fluid off the
lungs. I begged for an hour of sleep first. At 2:10 the new nurse
(incompetent) woke me up to look at my tongue and tell me they wanted to
clean my room (do not disturb?). At 3:30 they taught the med student how
to drain fluid from lungs. No fun. I have given up trying to sleep.
There is a loudspeaker/monitor 2 feet from my head calling for Melissa to
come to the desk that they can't turn off. Every four hours vital signs.
Every 6 ours wake me up for a pain pill. I am trying to get them to
coordinate a bit. Both should be here right now at 8 after which I need
to learn to sleep on my back, IVs in both arms now. I can brush my teeth
by holding my arm stiff and moving my neck. I will shoot anyone other
than the vital signs person or pain pill person who come in here before
7:30 am and after 8:30 pm. Four of five nights with 2-3 hours sleep. I
am calling my elbows ankles.
Jim brought the 286 plasma screen lunchbox computer with normal keyboard
but I need to pound on the keys.
They are hoping the chemo will stop the fluid before they need to take
more out.
Someone came to draw blood from needles. The head nurse had just left
after doing it from the PICC. This has happened 3 times now. I am
defensive. Just now another one tried. The latest nurse says I need an
X-ray tonight. They can wake me up (last time was 1:30 am). Nobody keeps
promises.
Hospital food - I asked for two pieces of whole wheat toast and cheddar
cheese for lunch. Got something from Texas that is coffee colored, with
American cheese, artificial butter, and a list of chemicals about 50 long
which Jim ate. I am ordering extra shredded wheat and bananas and lots
of mashed potatoes and vegetables. Hospital vegetarian food entrees are
all inedible in my current experience except the non-hot soup. The bean
soup was barely beany but lots of meat. Jim found ice cream in the patient
lounge, and a patient at the computer.
I can breathe much better now with all that blood but they keep taking
some out 2-3 times a day to analyze.
The chemo - 2 hours of cytoxin and then two shorter things. Until 2.
Transfusion 3 until 7. Wakeup at 7:30. I never thought I would sleep
through a transfusion. Jim got home 3:30 and got woken at 9 by our doctor
friend who asked if he woke him. I left him alone until 2:30 then asked
him to hold my hald through the half hour of fluid removal. I have no
hope of sleeping here in the daytime so I force fed myself supper/lunch
and it is 8:15 and they promised to only wake me at midnight and 4 am and
7:30 am and I could get as much as 8 hours sleep if I can learn to sleep
on my back.
Minus the X-ray and maybe another transfusion.
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slynne
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response 54 of 257:
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Aug 28 03:45 UTC 2003 |
oooh. that sounds miserable :( I hope you get to go home to some peace
and quiet soon
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jep
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response 55 of 257:
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Aug 28 04:33 UTC 2003 |
It doesn't sound like boredom and loneliness are your biggest concerns
right now. (-: I would guess you really, really don't want visitors
other than Jim.
I've gone 4-5 nights with 2-3 hours of sleep before, and it was
miserable, in and of itself. I haven't spent a night in the hospital
since I was 6, except when my son was born. The combination sounds
dismal. I hope you are getting your 8 hours tonight!
Best wishes, Sindi. Do you have enough meanness to enjoy the distress
you're causing to the kitchen? (I do.)
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tod
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response 56 of 257:
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Aug 28 13:31 UTC 2003 |
This response has been erased.
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oval
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response 57 of 257:
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Aug 28 14:54 UTC 2003 |
can't one of you guys drop her off some decent grub? geez.
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cross
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response 58 of 257:
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Aug 28 15:34 UTC 2003 |
This response has been erased.
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oval
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response 59 of 257:
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Aug 28 15:59 UTC 2003 |
strange ..
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tod
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response 60 of 257:
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Aug 28 16:26 UTC 2003 |
This response has been erased.
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keesan
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response 61 of 257:
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Aug 29 00:32 UTC 2003 |
Hello, this is Carliss who came to take blood pressure, temperature and oxygen
saturation and she has worked here 16 years and I love her even every four
hours in the middleof the night. She calls me sweetheart.
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keesan
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response 62 of 257:
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Aug 29 01:20 UTC 2003 |
This time it's Sindi. A very uneventful day except for the thrush all over
my mouth. They ordered Nystatin to swish around for 2 min then swallow.
Thrush is a fungal disease caused by the chemo messing up my normal defenses.
Someone is one putting three little bags of potassium into my IV because the
levels are down for some reason. I am working on eating supper - a bit at
a time as the tumor does not leave much room to eat into, or maybe it is the
fluid. My feet at still edemic
Lasic (diuretic) at noon and four pm and I think the potassium came out
the and needs to go back. `
Long gap when I had to get up to have the nurse listen to my heart and lungs
which meant moving the table and computer as the cord is too short, so I could
get out of bed. The only chair I can sit on to grex which is low enougy for
my feet to hit the floor (edema requires this) is the 'commode' which I have
to use since my IV cord (for rehydration) won't reach the lovely private
bathroom which I am paying for and have not seen the inside of because I would
have to call the nurse to unplug the cord and put me on battery. I will wash
my hair at the sink in the room. I have two plastic tubes - the IV and the
oxygen (little progns that go in my nose) which help in addition to two
removals of lung fluid.
From what I am writing it sounds like I should not have survived to this point
but it is at present more of a nuisance to be tethered to all these tubes.
Can't quite make it to the room door. I am supposed to be walking around to
reduce the edema - it is a very short walking pattern.
The food is under control. Jim keeps bringing me yogurt pudding (which I
never normally eat). They said they could find me full-fat unsugared stuff
here (but probably not unpuddinged) to try to put on my vegetables.
Protein - full-fat milk (not on the menu), hard boiled egg breakfast,
cheddar cheese slice and two breads lunch, cheese omelet supper. All the
other milk products are low-fat high-sugar including some weight gain stuff
- imaging maing weight gain products by using skim milk? They will find me
some real ice cream instead of 'frozen yogurt'. I showed the doctors and row
of med students that I found one more non-low-fat food - hard boiled egg.
The rest is plenty of really nice fresh vegetables. Jim brought peanut
butter. I am supposed to keep my teeth very clean. The IV in my right arm
(unused since the first transfusion Sunday) is preventing me from bending my
elbow. I am eating left-handed (put it in the spoon with my right hand, move
to left hand) and spilling all over a towel. Taking drugs left-handed - put
the drug in the mouth, transfer cup from right to left hand. Brushing teeth
left handed (slowly but surely). Flossing takes two hands and isa challenge.
I am forced to sleep on my back by having an IV in one arm and tubes in the
others. Amazing how much inconvenience once IV can cause. They were not
supposed to stick it in the crook of my arm. The head nurse here says he will
be back Sat. and the unused IV comes out then (after one week) doctor's orders
or not. I never sleep on my back but have no choice now and have had a
backache since I had to.
I hope people are finding this detail interesting - I would never have known
what hospital life is like and what the minor nuisance details can be after
you get the more painful stuff over with.
We are meeting all sorts of people. The guy who swept the floor (parents from
Haiti, grew up in NYC) says they will pay most of his tuition at the local
comunity college. He wants a GED and to learn carpentry. The guy who empties
the wastebaskets says U of M will pay for a GED but the degree needs to be
medically related. Then there are people who deliver lunch, who deliver
snacks, who remove trays. Nurses, techs, three shifts. The team to take
'vitals' every four hours also do bedpans (as least Carliss does, cheerily).
They are putting in fluids and have to measure whatever comes out so I sit
on this little graduated device with sharp edges). Twice today they gave a
diuretic which meant a lot of sitting. Not sure what they are going to do
with all the milliliter measurements but hospitals like to keep good records.
Jim brought me a bill this morning from St. Joe's for a test that was done
at U of M. St. Joe's said to call the doctor, it was not their fault.
Doctor's office said they had nothing to do with submitting the bill with
their name on it (from the general exam) an refused to talk to me or the
hospital. I actually started to yell at the accountant there, who obviously
goofed. I carried the specimen personally to U of M and then the the doctor
had St. Joe's billme. I called St. Joe's and got someone else who said the
first person was entirely wrong but kept no record of her haveing received
my call and promised to put a team on itto figure out what had happened.
Never again do I go to the doctor who did the general exam (and sat on the
lab results for three weeks because he was busy with other things - I could
have been in here three weeks sooner feeling a lot better to start with).
I am starting to understand that there are indeed billing problems. Twice
now U of M has billed the insurance company directly instead of PPOM. First
time I called to correct this. I will let the three of them battle it out
without me. I pay when they get it straight. I already paid the doctor.
Six times people have come by to stick needles in my skin to draw blood after
this is no longer done. One came at 6:45 am. No way to stop them but I can
chase them away. Tomorrow or later I find out if I have Epstein Barr,
hepapitis or 5 other viruses (I forget why but they are checking for viruses
- maybe just in general). Liver function? Sort of vague.
The thrush feels a bit less fuzzy. Artificial berry- banana flavor with lots
of artificial dies. I feel very chemical. They are letting me take my own
vitamins. Kelloggs shredded wheat (nothing refined) decided to add 10
vitamins and minerals. I agreed to a 4 oz choc or van 'milkshake' which is
low-fat milk with five kinds of sugar and more vitamins and 200 calories (4
oz milk is only 75). Never heard of fortifying whole wheat before.
The meat entries are beef stroganoff, salmon patties, beef chop suey, spicy
shrimp creole, etc. A bit more variety than my bread and cheese and omelet.
I wish they had left the hot peppers out of the veg entrees some of which look
pretty good. Friday I might try the special 'baked potato' for vegetarians.
I can put low-fat cream cheese on it or maybe wangle a piece of cheddar.
There is a rumor of swiss cheese existing.
Someone told Jim they had a whole bag and a half of whole wheat bread. Not
any more. The dietitians come and talk to me sometimes for amusement.
Enough for now and I am going to sleep.
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polytarp
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response 63 of 257:
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Aug 29 02:02 UTC 2003 |
The response before this is too scary to do more than read to a scan.
And this one too: Two responses before this one, one before this one.
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jep
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response 64 of 257:
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Aug 29 02:39 UTC 2003 |
You sounded a lot more chipper Thursday when I read your update than
you did on Wednesday late evening when I read those updates. I'm glad
and I hope it means you're feeling much better.
Yesterday it sounded like you weren't coming out of the hospital.
Today it sounds like you're going to rip through your chemo and be
back home in a couple of days. I haven't got a clue which impression
might be accurate but I am certainly cheering you on.
John III knows you're sick, says he's worried about you, and wishes
you the best.
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jmsaul
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response 65 of 257:
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Aug 29 03:14 UTC 2003 |
Need some cheddar cheese? I can drop it off.
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