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| Author |
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| 25 new of 257 responses total. |
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 |
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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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cross
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response 66 of 257:
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Aug 29 03:57 UTC 2003 |
This response has been erased.
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keesan
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response 67 of 257:
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Aug 29 16:34 UTC 2003 |
Continued - my feet to hit the ground is the commode. The surface is a bit
hard so I put a pillow on it. This confuses people who come to empty it.
I am much much better. This morning I told the doctor with the
every-lengthening train of medical students on early rounds that the
IV in my right arm was preventing me from sleeping (I had to lie on my
back), eating (I am a righty and had to eat left-handed with a spoon
spilling food all over myself), brushing my teeth, etc., so after keeping
it for no good reason for a week they just took it out. I could not bend
my right arm until now - it is a joy having a right arm again. I have
clean teeth and will shower and I ate twice as fast and will be able to
sleep.
The other good news is the midnight shift person who takes blood
pressure has decreed it has to be done manually (stethoscope) instead of
with a murderous machine that cranks it up to about 160 systolic which
nearly broke my wrist and usually got impossible readings (100/90). My
normal and current pressure is 108/65. I used to scream when the machine
took my pressure. To prove her point, she took machine pressure (140/90)
and then took manual pressure twice (110/70 and something similar). So I
am forcing everyone else to do it manually. They take pressure every 4
hours. I am being allowed to sleep 4 hours at a time. I have begged
people for a week to take pressure manually. Clarisse to the rescue - she
has been doing this 16 years. I cite her as an authority. She also tied
the smallest cuff and a bulb to my bed because thereisa shortage of them
and they keep disappearing.
Today again they are injecting a diuretic - up every ten minutes for an
hour or three.
Anyway, these were my worst problems. I tested negative for 10 or so
viruses, no bone marrow involvement,I am breathing well, eating well. Jim
is trying to make me eat yogurt pudding. He brought in a full-fat model.
At 11 they came in telling me I cannot eat for 6 hours before 3 pm. I was
eating breakfast (too many interruptions) so they rescheduled for 4.
I have this cute little bottle of banana flavored Nystatin oral to combat
thrush which I willhave for quite a while. My tongue feels like fur.
Lumch just landed and is going to the refrigerator.
I found a curtain that I can pull between me and the door. Every time I
sit on the commode someone knocks and comes in the door without waiting.
Respiratory therapy just added humidity to my oxygen. Nice.
I have five hours to wrap up with saran wrap and try to shower with a hose
and then I can turn my pump to battery, hook up an oygen tank, and go for
a hike to the patient lounge to help with the edema. I have never felt
quite so connected to my surroundings before.
bp 122/60,
oxygen 94 (97 isnormal)
temp 98.1
No more pain pills - only thing that hurts is a wad of cotton that leftto
catch blood a few days ago thatthe piccnurse has to remove.
The liver ultrasound is because my liver blood test values went
mysteriously up, but they cameback mysteriously down. This is all an art.
They do blood tests every day and adjust things. Nomore allopurinol or
potassium. Only drugs are 2xprednisone (awful taste is blocked by my fuzzy
thrush) and my own vitamins and prilosec. Life is easy. The plastic
mattress is sticky.
I presume I am over my deductible so when they mess up the billing only
the insurance company will case.
Jim will take photos around here. I may try connecting via telnet in the
patient lounge - Jim got it working.
A friend who works here stopped by last night to visit. I am on a special
immune-suppressent floor with all private rooms. No flowers allowed
except via email.
I don't have to eat for five hours. I am tired of trying to get fatter on
low-fat food. Supper will be special - a baked potato with imitation
probably low-fat cheese (they suggested I get iton the side so I don'tneed
to eat it). Somewhere in the hospital there must be someone else who does
not want to substitute sugar for fat in their diet. They ran out of whole
wheat bread but gotanother loaf.
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tod
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response 68 of 257:
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Aug 29 17:44 UTC 2003 |
This response has been erased.
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gracel
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response 69 of 257:
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Aug 29 19:03 UTC 2003 |
When I was in the hospital overnight after wrist-fracture-repairing
surgery, each person taking vital signs was followed shortly by
somebody else taking my blood pressure, and often by somebody else
taking it again. It's normally about 100/60 and the anesthetic (or
shock, or pain pills, or who knows what) apparently depressed it
further, and they didn't believe the first reading. Ever.
I was allowed to use the bathroom in the room, but not to get out of
bed and walk over to it by myself, because they were afraid that with
such low blood pressure I would get dizzy and fall.
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slynne
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response 70 of 257:
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Aug 29 19:55 UTC 2003 |
I am glad to hear you are feeling better. I do appreciate all the
detail of your posts. People dont usually talk about their hospital
stays that much. It is very interesting.
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scott
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response 71 of 257:
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Aug 29 23:45 UTC 2003 |
Ditto on the "glad to hear things are getting better" front, Sindi.
Have Jim bring in a fine-point Sharpie, and write "no needles directly in the
skin" on your arms. While you're at it, also write "blood pressure only with
manual cuff". :)
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keesan
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response 72 of 257:
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Aug 30 00:16 UTC 2003 |
We wrote a sign that worked on the door this morning - something about
needingto draw blood only from the picc - it worked. There are dozens of
plugs here - Jim got hislongest cord with a bad end that kept pullingout but
he fixed it now. There are special plug-in things that wrap around your calf
and are set to squeee the calf to movethe blood. They hurt as bad as the
machine that takes blood pressure. After ten minutes of torture and calling
nurses to takethem off I removed them myself.
The reason I cannot use the bathroom isthat I have an oxygen tube thing
loosely attached to my nose, which I could reattach to an oxygen tank instead
of the wall but why bother, and the device that rehydrates me through a tube
in my arm can also be unplugged and run on battery and replugged, but why
bother. We just unplugged me from it andthe oxygen for the shower.
Today I finished breakfast at 11 - there were blood draws and morning rounds
and stuff in the middle along with vital signs. The med student came to
tellme not to eat after 10 (am) because of a liver ultrasound at 3. They
changed it to 4 and I got to skip lunch. I watched her take lots of photos
(in color) and maybe audio recordings of veins and arteries that sounded like
whale calls. Arteries are louder. You could also see them as electric waves.
All mine are running in the right direction. My liver enzymes wentto high
but wentdown partway again. Lots of mysteries. I can still breathe and I have
a pulse.
Got back to lunch-supper and discovered it was really a blood drawing party.
At 7 I packed up the remains for breakfast tomorrow. They are trying to make
me drink a 200 calorie 'milkshake' (4 oz) daily based on heavy sugar syrup
with skim milk added. I am going to refuse.
My doctor friend stopped by to watch me eat vegetables for a while.
Jim is falling asleep. Me too but they are going to wake me at 8 (it is
8:10)for vital signs so we are waiting. I dream of going somewhere that I
can sleep without vital signs, on my side, no sugar anything, no tubes, nobody
with needles in the morning.
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jaklumen
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response 73 of 257:
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Aug 30 07:05 UTC 2003 |
Refuse? I thought you needed to gain weight. What, so sugar tastes
nasty to you?
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keesan
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response 74 of 257:
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Aug 30 15:27 UTC 2003 |
I do not willingly eat refined sugar. I think it is crazy that the only
things offered to eat in this hospital are all reduced-fat, skim-milk, etc.
The weight gain 'milkshake' is heavy sugar syrup with skim milk and artificial
flavor added.
Today is a day of rest, apparently. No doctor on rounds. I got to eat
breakfast with only a few interruptions for blood pressure etc. I am getting
a backache from the mush mattress and can't sit formore than a few minutes.
They will let me go home when my oxygen levels are okay. Soon?
Not on the menu but available are whole milk and ice cream and one slice of
cheddar cheese per day. They don't want people to know.
I was not allowed to eat lunch yesterday due to the ultrasound. Came back
from the test to a multiply interrupted supper. Got so tired we just
refrigerated lunch-supper and they cleaned the refrigerator this morning so
I am not gaining a whole lot of weight. Can't do it all right at once.
We have applesand peanut butter.
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