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| Author |
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| 25 new of 480 responses total. |
klg
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response 166 of 480:
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Oct 23 16:53 UTC 2003 |
no
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keesan
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response 167 of 480:
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Oct 23 19:12 UTC 2003 |
Today we walked across Liberty and then back, and around some new areas. We
found a rose tree with large fruits which Jim sampled, and nearby a large
paper wasp nest high in a tree. Still no frost.
Jim says he is getting out of shape as I get into shape because he is not
biking many places, or working on the house. These short slow walks with me
are not exercise for him. He wants to go dig up the yard (burdocks). First
he is looking over my translation to help figure out if things are slots or
notches (I apparently have both), explaining the use of a cam, and pointing
out that the drawing of the gadget is missing a few lines and could not
possibly work as drawn. I finally sent the insurance company receipts for
the mattress toppers (but forgot to include a copy of the prescription).
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keesan
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response 168 of 480:
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Oct 23 21:18 UTC 2003 |
Jim helped me turn a socket fork wrench into a spanner wrench and then went
to bed complaining he felt sick. I feel fine and am about to start a second
translation, also medical. Finally sent off two receipts and a prescription
for mattress toppers.
We discovered that if someone sends something on the superfine setting to a
fax machine without this setting it reverts to standard setting. You learn
something every day. So we plugged in another 'broken' machine from the same
friend that does superfine. He did not want it back after Jim got it going.
I am back on vacation starting Monday. If anyone wants to visit do it before
then.
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keesan
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response 169 of 480:
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Oct 24 02:40 UTC 2003 |
Jim's brother the radiologist tells me that lymph cells divide as often as
once a week and that it would take 20 weeks for one abnormal cell to grow to
a 1 cm tumor. In July I had a mass (tumor) in the spleen 8 x 13 cm which is
now down to 4 x 5 cm, implying that the tumors started at least 6 months
before that CT scan was done, back in the winter or before that. He says good
CT scan results are necessary if a cure will be possible. What is a cure?
5 cm is 2 inches. When this was larger I did not feel like I had much space
in my stomach. The spleen lies on top of the stomach (from the front view).
Jim and I have been trying to make sense of a translation where they kept
changing what was 'down' or 'under' depending on the viewpoint.
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tod
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response 170 of 480:
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Oct 24 20:12 UTC 2003 |
This response has been erased.
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keesan
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response 171 of 480:
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Oct 24 21:56 UTC 2003 |
I was wondering if a cure was lack of tumor cells or lack of symptoms.
Today Jim wore a pedometer when we walked to the Chinese buffet west of
Stadium Blvd. 3/4 mile there, 1.9 miles total including walking around in
the restaurant and to the library. I could probably make it the mile to Main
St. but might have trouble coming back, plus there is nothing much to do on
Main St. and the library and market are still further away. Next cycle?
There are irregular quarter-sized black spots with white borders on many of
the Norway maple leaves again this year. Some fungus? Jim sampled the red
sumac flowers and says they taste lemony. We said hello to a neighbor on his
street whose husband died of liver cancer 12 years ago tomorrow.
Jim sorted half the grapes (removed stalks, moldy ones, and beetles).
I may try turning the handle of the squeezo juicer for arm exercise. I was
able to crack my own fresh pistachio nuts (in the husk) using both hands.
I have been doing occasional vertical pushups against the wall or door,
and leg lifts. I tire quickly (and get bored too). But I no longer get
exhausted just trying to sit up in a chair. It gets easier.
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keesan
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response 172 of 480:
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Oct 25 01:13 UTC 2003 |
I just did some more online research. Rituximab targets not just cancerous
B-lymphoma cells but regular ones as well, if they have CD20 marker, which
over 90% of lymph cells have. I think they tested my abnormal cells to make
sure they had CD20. So this explains why my blood lymphocyte count (which
is small and medium lymphocytes, while the tumor cells and other lymph cells
in my lymph system are large-cell lymphocytes) is continuing to be slightly
low. It will take 9-12 months after therapy for my lymphocytes to recover,
meaning I am more susceptible to infections until then.
There are two types of lymphoma - indolent or slow growing or follicular is
the first, and often they don't treat that until the symptoms become a
problem, and what I have is called aggressive or diffuse which grows faster
and can be fatal in six months if untreated. (I would have either starved
to death or stopped breathing due to fluid around the lungs.) But the latter
is potentially curable and chances are up to 90% if I make it for two years
without any 'events' (recurrence of symptoms?). My chances of making it
event-free for two years are higher with the Rituxan (57%). Two year survival
is 70% on average but higher for me since I had a good CT scan. It sounds
like 'cure' means all the tumor cells are killed. These statistics are for
people over 60 and my chances are higher since I am somewhat younger.
If there is a recurrence of symptoms then they treat you again, often with
different chemicals than before, and your chances of being around five years
afterwards are not so good. My mother made it about 3 years after the first
treatment and 2 or less after the second, with just radiation for brain
cancer (which I think cannot be treated with chemotherapy due to the
blood-brain barrier but I am not sure.)
I guess I will know more after 3 more treatments.
I fell asleep in the early evening again yesterday and today. I wonder what
causes the fatigue. My hemoglobin is back to normal, that can't be it.
Tumors cause loss of 'lean body mass' (muscle). I am back up to 107 or 108,
same as in April when I had plenty of muscle, but I still don't have much
muscle. I cannot figure out where the weight is going. Maybe internal
muscles? Internal fat?
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keesan
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response 173 of 480:
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Oct 25 01:57 UTC 2003 |
I checked my blood counts and my lymphocyte count is within normal range at
the end of each cycle: absolute count is 1.1 and normal is 0.8-5.0. So I
am low normal already and therefore will not need 6-9 months to return to
normal. The other counts are also low normal but monocytes (neutrophil
precursors) and neutrophils (fight off infections) were normal-normal.
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keesan
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response 174 of 480:
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Oct 25 15:15 UTC 2003 |
I forgot there are two types of lymphocyte and I probably have plenty of
T-cells and not many B-cells. The counts do not distinguish.
I just got an encouraging e-mail from the author of some DOS software that
I use, who went through two years of hormone therapy for prostate cancer and
said he had male menopause - hot flashes, emotional instability, etc. I am
still getting hot flashes (having to take off a layer for a few minutes every
hour or so). What other symptoms are expected from menopause? I don't think
I have any of them so maybe the hot flashes are related to the drugs? I did
not have them before chemotherapy and I think it has been only a few weeks.
Apparently each type of cancer is treated differently.
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keesan
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response 175 of 480:
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Oct 25 23:34 UTC 2003 |
We had a nice visit with polygon and Sarah. Sarah drew us a rainbow and some
poems (which only she could read) and enjoyed Jim's collection of assorted
toys, shells, feathers etc. Larry tried a pawpaw and we discussed fruiting
trees and life in general. He will bring over a computer for Jim to fix.
Jim was supposed to fix a floor lamp but it insisted on working on arrival.
In the middle of the visit we got a phone call from another grexer who just
gave us two computers and had a third, which Jim biked over to pick up. Sarah
would like to use it for email but she can't read many words yet. Next year?
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keesan
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response 176 of 480:
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Oct 26 17:21 UTC 2003 |
In addition to reducing swelling, prednisone suppresses the immune response
which includes keeping lymphocytes from replicating as fast, which is why they
give it to cancer patients with lymphona or leukemia. Says Jim's brother the
radiologist, who also explained why I am getting so many different drugs -
each lymphocyte reacts differently to each drug (some probably developed
resistance to one or more of them). I will ask tomorrow if I can reduce the
dose and still get the desired effect.
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keesan
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response 177 of 480:
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Oct 27 01:03 UTC 2003 |
We took advantage of the dry weather on my last 'normal' day to check out the
parking lot apples that we usually pick last day of October. Most of the good
yellow ones must have been early as they were gone. We got some small red
apples off two trees and some sour green ones. Jim picked while I stayed in
the car out of the wind. Then he wanted to check CD-R prices so we went to
Sam's and Meijer's and also a new Chinese Foodland store on the way, which
had green mung bean noodles, and jujubes, and taro root, haw candy, preserved
duck eggs, shrimp chips and squid chips (to impress his sister with at
Christmas - she liked the duck eggs last time despite the brown whites and
blue yolks). He got parts to fix the vacuum cleaner that our friend ordered
and that we found on yesterday's walk at the curb (needed a new belt and
bags). I got my exercise walking from one end of Meijer's to the other.
A friend writes that her father in law has leukemia, which is much harder to
cure and he is also 78. I keep feeling lucky.
What is a good price for CD-R's? Is there some way to use driverguide with
lynx? You need to copy some code number and in lynx it looks like 2D&3F&....
not a code number that they would want. Jim is trying to get an Aztech
winmodem working.
I have to go order supper now and pack for tomorrow's therapy session. They
provide radios with CD players to each chair and we have CDs from krj.
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tpryan
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response 178 of 480:
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Oct 27 02:55 UTC 2003 |
Common retail prices include $12.99 for a spindle of 30, and
$19.99 for a spindle of 50. I wait for no-rebate sales to get the
spindle of 50 for $12 (sometimes Target) or $9.99. I got a price
check to get the spindle of 100 at Office Max for $14.99.
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davel
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response 179 of 480:
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Oct 27 14:36 UTC 2003 |
But for quite a while it was pretty common to see ads (office supply stores,
etc.) for them at about those prices, but with a mail-in rebate for the entire
amount. I haven't seen one of these for a few months now, but I got both CDs
& jewel cases almost free through these. (free less tax & cost of mailing
in, also inconvenience of copying/mailing and waiting for refund)
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keesan
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response 180 of 480:
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Oct 27 15:41 UTC 2003 |
Thanks to all, and we may check Target. Sam's was $13/50 plus 10% and $23/100
plus 10%.
Today I got two emails both Nigeria spam. The author of one of them said he
selected my name by praying over the names. I have three other people also
praying for me: a translator who needed my Hebrew name for the prayer, a
dairy farmer friend that we met in 1991 while biking who is Protestant, and
now Jim's Catholic sister. I told them to go ahead and pray if it made them
feel better.
Yesterday I got an email from a high school friend, whose father in law age
78 was just diagnosed with acute leukemia. A phone call from a friend who
offered to fetch me food and library books and has a friend with cancer. A
phone call from my aunt who keeps calling on the rare occasions when I am not
there in the evening. Her daughter died of Hodgkin's lymphoma at age 30 in
about 1985, and her husband of prostate cancer shortly after that. She tells
me how lucky she is to have such good sons. A phone call from Jim's sister
who says his nephew still has tongue cancer. His father the radiologist has
been explaining to me how prednisone etc. work. There must be someone
somewhere who does not have a friend or relative with cancer.
On the way to pick apples we stopped and got figs at the Produce Station and
discovered that my former neighbor across the street sells bread there. She
and her partner wondered why they had not seen us since July before they
moved. They will bring over some home canned produce from their garden,
canned with a pressure canner we gave them after we decided canning was not
worth the bother since we have a dryer and three freezers.
Got to pack up the mortar and pestle (took three tries to type that one) and
applesauce for the seven pills, lunch, CDs and books, maybe a blanket as I
seem to have some virus that makes me cold, and go give blood etc. before the
fourth infusion this afternoon.
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klg
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response 181 of 480:
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Oct 27 18:05 UTC 2003 |
For the Hebrew prayer for healing of the sick, the "Hebrew name"
generally consists of the sick person's Hebrew name and that of his/her
mother.
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goose
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response 182 of 480:
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Oct 27 20:20 UTC 2003 |
I hope you don't mind that I've prayed for you Sindi, not to make me feel
better however, but to make you feel and get better.
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tod
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response 183 of 480:
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Oct 27 20:27 UTC 2003 |
This response has been erased.
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keesan
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response 184 of 480:
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Oct 28 02:37 UTC 2003 |
I feel better to know that people are doing what they think will help me, even
though I am not religious myself. All this support is wonderful. And I am
definitely getting better.
Today was the fourth infusion. I had hoped to sleep an extra hour but woke
up on daylight savings garbage truck time at 6:30 am. We packed up bread and
apples and a mortar and pestle for the premedication pills, got blood drawn
(painlessly this time), and waited from 12:00 to nearly 3:00 for the 12:30
doctor's appointment.
Not-so-good news: I need to have four CT scans/year for 2 years, then 2 for
3 years, and then 1 for a few years as checkups to make sure treatment was
succesfull with no regressions. Ouch, and it will be expensive (up to
$6500/year at $2500 per scan plus doctor's visits but I only pay the
deductible of $6500). Which means about 20 more IVs and 20 32-oz barium
suspensions to drink.
Things that went wrong today: The infusion nurse, though I told her the last
three attempts to put IVs in my lower arm all had to be redone, tried again,
and had to take it out. She could then not use that same hand so had to put
the next one in my right hand. It was medium tolerable for the 4.5 hours and
I made a mess eating left-handed.
Then Jim found a flat tire as we were about to leave. He put more air in.
We got back okay.
Things that went right. The doctor says my CT scan results were amazingly
good, so good that the radiologist phoned to let him know. No enlarged lymph
nodes, and the residnal masses might not be cancerous, just voids or scar
tissues. If they don't enlarge (or if they srhink more) we can ignore them.
Good early results increase chances of a cure.
The funny taste (acidic, metallic) is from some drug.
The laryngitis might be due to nerve damage from the Vincristine, which is
also making my hands numb, so he cut that does in half and will send me to
an ENT specialist.
The chemicals should be out of my body in 1-2 days so I don't have to drink
large amounts of water after that.
If lymphocytes replicate once in 7 days, each treatment will only catch a
fraction of them, but the Rituxan should tag them all.
Someone else came in for interferon, a 5 minute procedure. My neighbor on
the other side was getting 20 min of donorubicin ? for Leukemia, four days
in a row every week for a few weeks, then after a month and some tests they
give her pills. Last time she had those pills all her skin peeled off and
she had a fever. She lost 25 pounds, is still chubby, but was advised to
regain the weight. She cannot understand why. She also still has trouble
with stairs after a month in the hospital.
Everyone I talk to has some different diagnosis.
Klg, exactly what were they treating you for?
One patient, age 90, has to come every day three weeks out of four for
treatment of incurable skin cancer.
I played some of the CDs that krj made me on their player with my headphones,
to help mask the TV noise on both sides. I was going to read a good book on
that Jim rounded up.
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keesan
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response 185 of 480:
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Oct 28 15:56 UTC 2003 |
Something got lost in the typing of the last paragraph to the effect that it
is hard to concentrate on serious reading (the book was a scientific study
of the harmful effects of genetic engineering) when your hand aches so I
looked at a bunch of pointless magazines that Jim borrowed from various
waiting rooms and attempted to talk to my neighbors but my voice was too weak.
I just realized that, unlike the previous CT scan when they fed me artificial
banana flavored barium drink, this time it was artificial fruit flavor and
the smell is NOT coming out in my urine and sweat for ten days. I am really
sick of banana flavor but have to use it again next weekend for the thrush.
So I don't have to look forward to 5+ years of stinking for ten days at a
time.
I was having hot flashes for the past two weeks, about one every hour, but
chemo seems to have eliminated this. I noticed this last cycle, too.
Prednisone (decadron yesterday) might be responsible as it is hormonal, but
it also eliminates the ability to sleep. Got to take the first one in half
an hour. The third pill before the traditional chemo drugs was Ativan, which
is normally given for antianxiety but also is anti-nausea, like the two Kytril
pills (at $73). Still no nause. I can remember most occasions in my life
when I was nauseous and it was never from drugs - I had altitude sickness
twice (Colorado and a Bulgarian post office across the street from a clinic
that treatment me for free), heat or sunstroke in Ann Arbor, flu but not for
many years, when cigar walked by me in an airport after 10 hours in a plane
where smoking was allowed (I threw up into a large ashtray).
What makes other people nauseous?
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davel
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response 186 of 480:
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Oct 28 15:57 UTC 2003 |
What goose said: I also pray for you, Sindi.
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klg
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response 187 of 480:
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Oct 28 17:43 UTC 2003 |
Medialstinal non-hodgkins lymphoma
Wow. A lot more CTs than my drs are ordering.
My drs. & txs are a lot more prompt.
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keesan
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response 188 of 480:
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Oct 28 21:13 UTC 2003 |
Can you tell us something about mediastinal lymphoma, which I have not even
heard of before? Perhaps it grows slower than what I have, which I am told
can double every week, which is why they would want to check more often.
THanks to everyone for good wishes of any form, including prayer.
Today I still have the muscle strength to walk 1.5 miles to the library and
back. Sort of dreary and drizzly out so we did not spend much time admiring
the trees. The wet leaves on sidewalks are pretty. Jim will be busy making
me low-sodium high-fiber meals for the next week (and he still has not juiced
the grapes, having become distracted by three new computers with bad software
on them.) We found two possible winmodem drivers at the library and looked
at his daughter's website complete with falling hearts (flash macromedia) that
interfere with reading the text. She has links to lots of hotels and B&Bs
in Newcastle Ireland, and offers wedding attendees a vegetarian menu. Jim
checked off Not coming and Vegetarian Menu at the RSVP page.
If we can finish building the house in two years, then I can go on a vacation
of up to 6 months between checkups. Wishful thinking. The second checkup
each year would be in July. I have an uncle who spends winters in Jamaica.
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keesan
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response 189 of 480:
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Oct 29 15:45 UTC 2003 |
I have been chilled (temperature 96) since the weekend - is this some new
virus going around? Together with the prednisone (which kept me going to the
toilet every half hour from about 10:30 to 2:30 am) this kept me awake until
around dawn. I think I fell asleep at 7:00 which gave me almost two hours
sleep before the neighbors' cars in the driveway woke me. Good thing I don't
need to concentrate between now and Sunday. Next prednisone in 20 minutes
(with food) since I took the prilosec 40 min ago, then an hour's nap before
it takes effect again. I can stop drinking so much this evening - 48 hours
after infusion.
Jim wants to try making tapioca from the pear juice. The nasty tasting pills
taste a lot less bitter in pear sauce than in apple sauce. I wonder why.
I am up to 111 pounds on one scale and 109.5 on two others, of which 5 must
be fluid retention. It goes back down by morning.
We have not yet made grape juice because the kind grexer who gave Jim one
computer a day for three days just gave him three more while I was taking a
bath last night.
Yesterday I got another hospital bill for $138 for Jim's lab tests. Turns
out the doctor's accounting person never did send in the correct code numbers
for preventive (wellness) instead of diagnostic and PPOM won't pay anything.
She says she talked to the hospital and they told her it was going towards
the deductible. I tried, very slowly, to explain that our policies allow up
to $400 for preventive care (of which PPOM pays 80% and we pay 20%) if she
would only bill it as preventive and she refused to do so and said I was
taking up too much of her time. I pointed out that she was at least getting
paid for her time and I had wasted at least 10 hours trying to deal with at
least three different billing errors already. She said to have the insurance
company phone her and I should never phone again and she hung up on me. I
am thinking of writing PPOM suggesting that they drop this doctor from their
list as they cannot follow the rules. I will call the insurance company again
today to find out what happened. And maybe PPOM as well.
I had explained the insurance policy before we ever made an appointment.
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keesan
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response 190 of 480:
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Oct 29 17:59 UTC 2003 |
My pulse was down to 70 when they measured it Monday. This is good.
But it still goes over 100 when I go out walking.
I think we can trade our 40G drive and 17" monitor for all these computers
that Jim keeps receiving. Nice to find a home for them.
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