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| Author |
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| 24 new of 257 responses total. |
keesan
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response 234 of 257:
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Sep 21 17:43 UTC 2003 |
More insurance company statements - for some things they are getting more than
50% off. I have not seen their discount for the room yet. The blood tests
get discounted about 80% or more - one test was $7 instead of $70 or so.
Yesterday I took my first bath in a few months, sitting on something padded
that kept floating upward if it got loose. A bath is warmer than a shower,
takes a lot less energy and balance (no need to hold onto the wall and I can
use both hands) but still took me about an hour as I kept running out of
breath and energy. It may have helped my cold, which has progressed from
stuffy nose, chilly, sneezy and sore throat to blowing my nose all the time.
Last cycle the blood draws showed that my imunity (neutrophils) started to
drop exponentially (from 23 to 15 to 8) on the fifth day. Today is the
seventh and I have thrush (fungal infection of the mouth) again and my gums
and tongue and lips ache a bit and it hurts my teeth to eat and this will be
treated with Nystatin for the next 12 days or so. My neutrophil count on day
11 will be about .1 then start to double (1.2 three days later).
They city has returned the $5000 bond they took from us in 1994 for the house
we are building and I will pay the deductible with it. They agreed that the
house is now properly enclosed (it had no walls in 1994) so they won't need
the money to tear it down if abandoned. It was returned to sender and came
back again for some reason. We are not supposed to stop working for more than
6 months but I explained that I would have trouble working this winter.
Jim is calling me for lunch.
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keesan
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response 235 of 257:
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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.
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klg
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response 236 of 257:
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Sep 22 01:27 UTC 2003 |
Don't know about the future CT scan schedule. Gotta ask the doc in Nov.
Those CT smoothies are really good, tho.
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keesan
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response 237 of 257:
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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.
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tod
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response 238 of 257:
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Sep 22 15:24 UTC 2003 |
This response has been erased.
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keesan
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response 239 of 257:
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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.
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keesan
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response 240 of 257:
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Sep 22 17:51 UTC 2003 |
My pen pencil at the desk reads 'without faith there is failure'. The pen
reads 'The Future is Now 1996'. The newer drug I am taking is 1997. It is
not listed as having any side effects. My hands are still trembling from one
of the old ones and will probably continue to do so through January.
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rcurl
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response 241 of 257:
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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).
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keesan
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response 242 of 257:
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Sep 22 22:36 UTC 2003 |
Thanks, I will tell Jim.
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dah
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response 243 of 257:
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Sep 22 22:55 UTC 2003 |
You're welcome!
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keesan
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response 244 of 257:
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Sep 23 05:38 UTC 2003 |
After the rain stopped we walked to the farthest corner of the long block (3/4
of the block which runs N/S) and then turned the corner and walked the short
block and came back. Around the block would have involved a roller-coaster
section of the next two blocks, which includes the orchard. Maybe tomorrow
I can make it to the pear tree.
I am noticing many things that I normally did not see while walking around
here before. There is a birch tree and some nasturtiums. You forget there
is a world outside after being cooped up inside.
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jep
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response 245 of 257:
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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!
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tod
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response 246 of 257:
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Sep 23 15:45 UTC 2003 |
This response has been erased.
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keesan
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response 247 of 257:
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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.
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keesan
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response 248 of 257:
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Sep 24 12:29 UTC 2003 |
Despite sore legs and tremor in my hands I was able to peel peppers standing
up last night for a little while. I run out of breath fairly quickly and my
pulse rate goes up to 100 (from its resting low of about 90). In the hospital
it was 120. If you don't exercise, your resting pulse gets higher, I think.
Jim's is 160.
We have Macedonian, Serbian, and Bosnian recipes for ajvar, which is made of
red peppers etc. The Serbian recipe only added garlic, the others also
eggplant and onion and lemon juice. The Macedonians bake their vegetables
and then add olive oil (lots of it). The others fry the baked vegetables in
olive oil until the mass gets thicker. We will experiment. Ajvar is only
$2.50 for a large jar but all the commercial ones are made with hot peppers.
You can get it from Macedonia or Bulgaria or Hungary.
The skins peel well if you have an oven you can set to preheat (both top and
bottom elements on) at 475 and then cook the peppers at the preheat setting,
but the peppers also cook more than they did on just broiling in the broiler
oven and wont' freeze as well as plain peppers.
We will probably freeze some ajvar. Jim is worried about a texture change.
The Maceodonians heat up the jars of it in an oven with oil on top as the only
preserving method but sometimes they spoil.
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rcurl
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response 249 of 257:
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Sep 24 16:23 UTC 2003 |
Those numbers can't be pulse rates. Are they blood pressures? 160 is
dangerously high.
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keesan
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response 250 of 257:
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Sep 24 18:44 UTC 2003 |
I meant Jim's resting pulse is 60, not 160.
Today my pulse after walking was 120, which is what my resting pulse was when
I entered the hospital. My resting pulse is down around 85 (lying down?).
What keeps me from exercising longer is my pulse going up, I think. Amazing
how it only takes a few months of inactivity to lose your ability to move.
We set off for the near corner admiring how on Jim's block there are a lot
of small (900 sq. ft). Cape Cod houses built out of mostly the same materials
(the same two front doors, three models of window - 6 over 6, 6 over 1, 2 over
2 panes) but with minor variations in window size and placement and whether
there was a front porch and of what type or a decorative gable over the front
door. Jim is lucky his was the first or second, before they felt obliged to
paste on unnecessary features, and he got the largest living room window
(double size) before they ran out of building materials during WWII.
These houses continued around the corner to the left (without a hill) so we
did too. We passed what is left of a small wooded area (things turning red),
looked at some larger and less interesting houses from the 50s and 60s, turned
left, and made it all the way around the block past the local park by
distracting my attention from my wobbly legs to more of these similar houses.
I should be able to make it to the pear tree soon.
Saw a catalpa tree and two climbing hydrangeas on a fence. Jim has one and
they must be the slowest growing vine ever planted. His grew two feet in ten
years and had its first flower this year.
Fava beans (in the pod) and finger potatoes (from a friend's farm) for lunch.
Delivered to the computer.
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mary
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response 251 of 257:
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Sep 24 22:48 UTC 2003 |
It's the anemia that's pushing our heart rate up. If your
blood volume or components aren't allowing for adequate
oxygenation then the heart happily pumps faster, to compensate.
I'm glad to hear you are feeling better, Sindi.
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mary
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response 252 of 257:
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Sep 24 22:49 UTC 2003 |
Er, *your*.
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krj
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response 253 of 257:
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Sep 26 00:57 UTC 2003 |
With Sindi's approval, I've started a new item in the fall Agora.
Conference agora47, item 28. ( item:agora47,28 )
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davel
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response 254 of 257:
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Sep 26 13:38 UTC 2003 |
Could it maybe be linked to Health, please?
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gelinas
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response 255 of 257:
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Sep 27 16:04 UTC 2003 |
("Things turning red" are likely to be poison ivy, especially if it is on the
tree but not part of it.)
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denise
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response 256 of 257:
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Sep 7 01:57 UTC 2006 |
Sindi, I just read through this item and had no idea you had to go through
such an ordeal!! I know its been about 3 years since the last posting [at
least in this item; I haven't skimmed through the other one yet]; how are
things going for you now?? I do know that you and Jim do a lot of biking!
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keesan
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response 257 of 257:
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Sep 26 13:24 UTC 2006 |
I passed my April tests and am fine. No long bike trips yet, just a few to
the lake 12 miles away to swim a mile. Three more years of CT scans then at
least 5 of just blood tests annually. We just met someone else who had
lymphoma 10 years ago and says it tickles when they check his lymph nodes.
This was at a party given by someone in his 80s who just got diagnosed with
a less curable cancer, and he is probably too old for surgery. I was lucky
I did not need surgery or radiation. Someone else whose melanoma came back
is supposedly trying to treat it with wheat grass. (Her odds are not a whole
lot worse, I guess).
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