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| Author |
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| 25 new of 257 responses total. |
albaugh
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response 31 of 257:
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Aug 25 18:36 UTC 2003 |
Does anyone else find the comment in #22 ironic?
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jep
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response 32 of 257:
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Aug 25 19:05 UTC 2003 |
re resp:30: Scott, why does klg's preference matter? I created this
item, at Sindi's request. I'd appreciate having this item linked to
health because I think Sindi would appreciate it.
No offense meant to klg! But I wouldn't think any user could come
along and veto a request to have an item linked.
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klg
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response 33 of 257:
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Aug 25 19:23 UTC 2003 |
Was that a veto or merely a response to a question?
Why not have a single conference instead of sorting them by subject
matter?
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scott
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response 34 of 257:
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Aug 25 20:12 UTC 2003 |
New linked to the Health conference as item 86.
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senna
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response 35 of 257:
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Aug 25 20:29 UTC 2003 |
U of M, PPOM, all kinds of fun insurance words. Sindi, make sure you read
all your bills--insurance billing often works like a charm. The more bills
go out, though, the greater the chance that something will go horribly wrong.
Keep your eyes open.
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rcurl
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response 36 of 257:
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Aug 25 20:29 UTC 2003 |
Re #10: usually the liver eventually takes over the function of the spleen
after the spleen's removal, so antibiotics and stricter avoidance of
infection are only needed temporarily.
Lymphoma is a cancer of lymphocytes, which can be confined to a single
lymph node or can spread throughout the body to almost any organ. One of
the functions of the spleen is to produce lymphocytes, so it is not
surprising that it could be a site for lymphomas.
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keesan
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response 37 of 257:
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Aug 25 21:42 UTC 2003 |
Here is a summary. Add to that CT scan at 8 (can't eat first), bronchosopy
tomorrow (cant eat after midnight) something like prednisone and transfusion.
Heart scan, catheter maybe tomorrow. The steroid is supposed to keep me
awake.
Hi. They sent me home Wed. from the spleen biopsy with a temp of 101 after
a Tylenol (it was 102 ). After two days of severe pain at the biopsy site
I called to ask about a pain killer and my fever. They said to go to the
emergency room. I called my friend who is a doctor. He prescribed
Tylenol with codeine and the next day put me in the hospital. You cannot
sleep more than 1/2 hour in the hospital. The first night (11:30 to
12:30) they drained 2 liters of fluid from one lung (just as much left).
They had taken chest x-ray s but took another at 1:30, after which someone
kept coming in to take vitals on me and my roommate, 1/2 hour apart. I
have a high pulse rate and still am not breathing deeply. Lots of blood
samples, IV with saline and antibiotic. This morning I got to sleep a
bit. They just did a bone marrow biopsy and next is a CT scan of the
chest and a transfusion and prednisone and supper (can't eat for a while).
Jim has been bringing me useful objects such as a kitchen chair and now a
computer for email.
I am writing you all at once as this is a really awkward setup.
Tomorrow a catheter. They will get bone marrow results and maybe start
chemotherapy. I have to eat more but they don't let me eat before CT.
My just-left roommate had severe psoriasis.
This is b-cell lymphoma and ifit has not spread should be treatable.
Nothing feelable in the upper lymph nodes.
It is sort of nice here. Someone chose my vegetarian food for the first
day. Breakfast - zero fiber. Soy milk, juice, rice krispies, melon.
A big insulating cover over the entree - one hard boiled egg.
They brought me a pasty bagel which Jim ate and prune juice and a cheese
omelette.
Lunch (marked vegetarian) was chicken and stuffing and corn and potatoes
and iceberg lettuce.
Supper was vegetarian. One slice of white bread. One iceberg lettuce
thing. The covered entree was thawed green beens. They added beets for
me.
Saturday supper was enormous: green beens with tofu-spaghetti sauce which
Jim ate because it was full of black pepper. They brought me a
replacement with plain spaghetti sauce. A mashed potato. Potato salad
which Jim ate. Pasty roll which nobody ate. Canned peaches. Milk. A
mixture of sugar, cinnamon and a bit of cooked apple which Jim ate.
I got to choose shredded wheat today. They are providing snacks too. Got
to get back 10 pounds.
Tomorrow they put in a catheter and maybe start chemo. Need more test
results bac
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cross
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response 38 of 257:
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Aug 25 21:55 UTC 2003 |
This response has been erased.
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klg
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response 39 of 257:
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Aug 26 00:42 UTC 2003 |
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??
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scott
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response 40 of 257:
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Aug 26 01:39 UTC 2003 |
Sindi, feel free to ask for help. I'm still in town and fairly unscheduled.
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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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