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| Author |
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| 25 new of 257 responses total. |
keesan
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response 75 of 257:
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Aug 30 16:49 UTC 2003 |
At 11:30 the doctor came on rounds with only three people in tow.
I will have another 5-7 cycles at 3-week intervals, outpatient. Don't need
to take any more prednisone or prilosec. They will takeme off the fluids iv.
Only need to do oxygen and I can drag a tank around and go for a walk to try
to reduce the edema in feet ankles and legs. The fluid around the lungs is
not returning fast enough to be any problem. They turned the oxygen down from
5 to 3.5. They keep measuring my weight which is sort of random as it is
whatever fluids they put in and took out.
Lots of spinach for lunch, cauliflower, potato, milk. I asked if they could
add a piece of cheese and a boiled egg. Maybe in an hour or two.
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tod
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response 76 of 257:
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Aug 30 20:07 UTC 2003 |
This response has been erased.
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jmsaul
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response 77 of 257:
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Aug 30 20:37 UTC 2003 |
They've certainly got fatty vegetarian foods down in the cafeteria.
Deep-fried mushrooms and stuff.
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jaklumen
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response 78 of 257:
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Aug 30 20:54 UTC 2003 |
resp:74 If my eating plan continues to be a success (and low-carb
diets are right), then refined sugars really do pack on the pounds.
I'm a little bit leery of Dr. Atkin's notion that fat doesn't
contribute to weight so much, so I try to avoid it somewhat-- although
lots of reduced fat products pile on the sugar, supposedly to make up
for the taste.
What about other carbs? Pasta? You did mention the potato. Yeah,
Tod mentioned pancakes. Maybe pancakes could be good.
I hope all is well and this is over soon. This can't have been much
fun.
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jep
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response 79 of 257:
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Aug 31 02:45 UTC 2003 |
Jim took a picture of Sindi typing on her portable computer, and Sindi
asked me to post it. It can be viewed at:
http://jep.tonster.com/photoalbum/friends/umhosp
The thumbnail is rather unclear; the picture itself is better if you
click on the thumbnail.
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cross
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response 80 of 257:
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Aug 31 04:15 UTC 2003 |
This response has been erased.
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md
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response 81 of 257:
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Aug 31 13:39 UTC 2003 |
Sindi, I have mixed feelings about all this.
I admire your steadfastness. If you think you're driving the help
nuts, you should know that a study of hospital and convalescent home
patients found that, all other things being equal, the patients who
complain the most and are the most demanding are the ones who make the
best recovery and go on to live the longest lives thereafter.
At the same time, I can't help but wish that you'd just drink those
damn 200-cal shakes until they find you something better. You don't
want to be a martyr, I hope. (If I were your doctor, I'd tell the
nurses to use one of those funnels-with-the-hand-crank devices they
feed Strasbourg geese with, so be glad I'm not your doctor.)
But really I just want to see you get well and I'd love to see you do
it your way. "The philosopher is in advance of his age even in the
outward form of his life. He is not fed, sheltered, clothed, warmed,
like his contemporaries."
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tod
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response 82 of 257:
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Aug 31 14:37 UTC 2003 |
This response has been erased.
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lk
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response 83 of 257:
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Aug 31 17:08 UTC 2003 |
Certainly in the short-term it is better to eat bad food than no food.
But the good news seems to be that soon you will be eating food coming
out of your own kitchen!
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cross
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response 84 of 257:
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Aug 31 17:17 UTC 2003 |
This response has been erased.
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slynne
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response 85 of 257:
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Aug 31 18:26 UTC 2003 |
sugar is just carbs too
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cross
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response 86 of 257:
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Aug 31 20:52 UTC 2003 |
This response has been erased.
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md
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response 87 of 257:
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Aug 31 21:37 UTC 2003 |
I always read that refined sugar is more like high-octane gas. Empty
calories, pure energy that turns to Elmer's Glue-All in your arteries
if you don't use it. (That applies to glucose in any form, from
refined or unefined sources, but I don't want to get into that argument
here.) I'm not sure someone in Sindi's condition should be downing the
stuff in one gulp. But finishing it in sips over an hour or so could
supply the energy her body's been forced to steal from her egg and
cheese snacks. Think of it as another kind of medicine -- something
you need that you wouldn't consume in any other circumstances.
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jaklumen
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response 88 of 257:
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Aug 31 22:47 UTC 2003 |
resp:84 well, that's 2 for the pasta.
resp:79 thanks for the pic.
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rcurl
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response 89 of 257:
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Sep 1 00:51 UTC 2003 |
"Sugar" usually means sucrose, whether "refined" or not. It would help if this
were discussed in more precise terms. "Refined sugar" is nearly
meaningless. The sugar sucrose is a disaccharide of glucose and fructose
although it must be partly digested to release those monosaccharides.
If it isn't fully "refined" it is still sucrose, but with other substances
attached. These include compounds in raw sugar such as lactosucrose,
xylose, other polysaccharides, plus "colorants", which are a mess of
high molecular colored compounds of uncertain composition. The latter
color molasses. I'm not sure of the nutritional role of these various
impurities.
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keesan
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response 90 of 257:
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Sep 1 02:07 UTC 2003 |
The stuff they wanted me to drink is the usual mixture of corn syrup and other
junk. Jim conked out today (needed sleep) so I have not had the computer set
up. It is too heavy for me to manage as I am very weak. I think I will just
have him bring me food. The hospital diet is very different from ours -
about 1 / 10 the bulk. He will bring whole grains and beans and real salads.
Salad today was two slices of tomato, ours being three tomatoes and a few
cucumbers. Potatoes and carrots and a cupof milk is no way to gain weight
either.
Today they mostly left me alone, after first waking me upto draw blood last
night half an hour after I fell asleep. The order came in at 9:20 but the
nurse was busy until 10:30. The usual blood presure every four hours. The
very nice woman who takes it is not a union member so she is working 84 hours
this week and got 3 hours sleep between shifts. Another person is working 80
hours to pay off eBay She is into cameras. I don't know much about the
people who bring and collect trays and wastebaskets as their English is not
usually so good.
Typical day. 7 am. I get woken up to draw blood and ask for five minutes to
myself first. Substitute med student at 7:30. Breakfast tray. Take some pills
at 8. Take some different pills at 9. They want me to go for a walk to see
if my oxygen levels are steady. I bed off until lunch. Jim goes home and
sleeps the sleep of the exhausted. I fall asleep during lunch because they
gave me a diuretic just before bedtime and I was up half the night. They wake
me up and make me walk - keep your eyes open. Finally they let me sleep for
an hour, after which nobody has bothered me all day for anything. I even
looked at the television. Jim is here now. Four times a day I apply Nystatin
oral which really hurts my teeth - after every meal. Swish two minutes,
swallow, then try to rinse out all that sugar. Is the sugar (33% sucrose) a
preservative or dothey think people will like it. Banana flavor, as was the
barium contrast solution. Brushing my teeth and doing the banana stuff uses
up all my energy (as does eating half a meal - I decided to not bother with
the rest of supper and had ice cream later instead). They say maybe I need
more hemoglobin (transfusion). Maybe tomorrow I will have more energy. I
am flat on my back typing, can't see the keyboard but at least it is not
laptop. 286 lunchbox. A friend offered a lock for it.
I will have 6-8 cycles every 3 weeks. A friend who works here as a clerk had
both parents die of leukemia and he said the first week you feel worst, then
you feel better for a couple of weeks. I feel okay except for the thrush and
the utter exhaustion but I really need to gain 20 pounds (NOT sugar water).
Jim will bring me real food. He brought peanut butter to put on the woody
apples and has finished it already. He eats what I can't. Walking garbage
can. He cold not stand the artificially flavored sugar water either.
I should be asleep now. People tell me the weather is nice. Also that if
I can be mobile I can maybe get a meal ticket to the cafeteria instead of
potatoes and carrots and milk for every meal. Drag the oxygen tank along.
Zzzzzzz.
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jep
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response 91 of 257:
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Sep 1 02:31 UTC 2003 |
John III thinks you ought to eat, Sindi. I'm sure he knows all about
being told to eat things you don't like; he's a kid, and that's part
of the experience of being young. He said, "You need to eat when
you're not feeling well." I told him I'd pass that on.
I showed him the picture Jim sent to me to have posted on the WWW
page. He was glad you have something to do.
I censor the heck out of what I tell him. You're sick, they're taking
care of you, you're getting better, and Jim is there to help you.
He and I both wish you well.
Of all the people I know save one, I would have thought *you'd* have
the easiest time getting along with those who don't speak English!
Heh.
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klg
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response 92 of 257:
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Sep 1 03:23 UTC 2003 |
re: "I will have 6-8 cycles every 3 weeks. A friend who works here as
a clerk had both parents die of leukemia and he said the first week you
feel worst, then you feel better for a couple of weeks."
Had a tot. of 6 tx. of chemo. (C.H.O.P. + Retuxan) 3 wks apart. Took
2+ wks to feel "better" (comparatively), esp. toward the end. Dr. said
could have been up to 8 tx, but that's about all they wd do because of
toxicity.
Tx cd be delayed if physical evaluation/lab results not good. To boost
generation of blood cells, had to inject self with Neupogen - 3x/cycle @
$400 a crack. Made pelvis and long bones ache.
Followed by radiation: 5x/wk - Apr. thru 1st wk of May. Not bad at all,
compared to chemo, but wouldn't recommend it for fun.
Watch for mental effects of chemo. Felt like was 2 steps behind in
coversations. Forgetful. Ability to focus impared. (Totaled a car 4
mos after chemo ended - due to lingering effects???)
For cancer patients & caregivers:
Welcome to Curetoday.com
... FREE subscription xxxx. Back Issues Check out our back issues online
xxx. Write for CURE See how you can get your story published.
www.curetoday.com/ - 20k - Aug 30, 2003
Suggestions: Positive mental outlook. Focus on the big picture. Don't
complain; be as cheerful as possible. Take life as it comes, a day at a
time. Pray.
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scg
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response 93 of 257:
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Sep 1 07:20 UTC 2003 |
I don't know what Sindi's experience with refined sugar is, but I've found
in the last few years that it makes me feel awful. In addition, since it's
a source of quick non-lasting energy, it tends to make me hungry again very
quickly. I can eat a meal without much sugar and be happy for hours, or I
can eat the same meal, followed by a few cookies, and be starving an hour
later. Generally, unless I'm biking or something like that that is actively
burning lots of calories right at the time, I'm much happier avoiding it.
That said, eating sugar, assuming a constant supply of it, certainly appears
to me to be a good way of gaining weight. Those of you who knew me several
years ago may remember that I used to drink root beer pretty constantly. When
I stopped drinking soft drinks, I lost more than 60 pounds in five or six
months. I assume the wsame would be possible in reverse.
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slynne
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response 94 of 257:
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Sep 1 13:37 UTC 2003 |
Sugar makes me feel awful too. But not before making me feel REALLY
good for a little while. I think it is addictive. It also is very good
for gaining weight but I can appreciate that Sindi doesnt like it. If I
were to ever kick my sugar habit, I would be really pissed if I went to
a hospital and they offered me things with a lot of sugar. It would be
like getting out a morphine drip for an ex heroin junkie.
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oval
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response 95 of 257:
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Sep 1 14:41 UTC 2003 |
i also don't like sugar too much. it makes me feel crap too. this and being
mostly vegetarian also make it hard for me to gain weight. french fries and
pizza are a favorite fatty foods, as well as pasta with rich creamy sauces.
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bru
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response 96 of 257:
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Sep 1 23:33 UTC 2003 |
Drink the damned sugar, eat the damned food, and get the hell better! Then
you can concentrate on breaking the damned habits all over again.
Tell him to quit eating your lunches and bring his own. I am sure the nurses
and doctors are trying to evaluate your intake of food and the weight you
gain. He may be throwing it off by eating your food.
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keesan
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response 97 of 257:
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Sep 2 00:28 UTC 2003 |
Jim did not eat my lunches, he ate what I could not eat.
They walked me around in a circle yesterday, did it again today without oxygen
tubes in my nose. The IV rehydration drip disappeared a couple of days ago.
Today I could actually leave the room. (Also use the bathroom instead of the
'commode' - every time I sat on it someone was sure to come collect a
breakfast tray). I did a good job walking in circles without oxygen. I am
stabilized. The only awful things they did to me today (other than wake me
up to discharge me) were to draw blood while I was trying to sleep at 7 am,
and then shine lights in my eyes at 7:30 and ask how I felt (I felt like I
was trying to sleep).
I have to take a few pills, eat a lot, and try to exercise (meaning walk more
than 5 feet, sit up more - I have to lie down frequently) and I have two weeks
until the next chemo. Total of 6-8 every 3 weeks. I will feel better during
the last two weeks of each 3 week cycle. I will feel less knocked out each
cycle, with luck. The digestive problems will go away soon I hope.
I am eating Jim's home cooking. No low-fat anything. Stewed zucchini and
real cream cheese on whole-grain rye crackers. I will try to eat ice cream.
He got me the most fatty he could find.
I am home (by the way). I am about to fall off the chair. Good night.
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jep
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response 98 of 257:
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Sep 2 00:35 UTC 2003 |
Congratulations, Sindi! It's great to hear you're out of the hospital!
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slynne
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response 99 of 257:
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Sep 2 02:25 UTC 2003 |
I am glad you are home
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