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Grex > Health > #89: Sindi Keesan's Lymphoma Journal Part 3 |  |
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| 25 new of 475 responses total. |
keesan
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response 374 of 475:
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Apr 14 00:25 UTC 2004 |
This past weekend I was able to walk to both Scott's grex potluck and Aruba's
grex staff meeting (which prompted offers to drive me home and attempts to
feed me). My legs are still weak and I am trying to do a few deep knee bends
once in a while, holding onto something. Last time I did 3 and I will try
for 4. Biking is easier.
Fingertips still a bit numb, no noticeable change, no problem.
My voice was worse for a week which I think is due to a cold but today it is
getting better despite the sneezes. I just listened to my own voice on a
cassette tape and it sounds high pitched and weak compared to now.
I did some more reading on hot flashes at several sites. They start in the
neck and face and progress to the chest and waist. They start in the waist
and chest and progress to the neck and face. You should wear cotton and not
wear turtlenecks. (I am wearing several layers of wool over a turtleneck).
You should take off layers to cool off, or stick your hands in ice water. I
just take off one or two wool hats and unzip my wool vest. The hot flashes
can be several times a day early morning and late evening. Or as often as
every 90 minutes. I was getting them every 45 but at last timing it was just
over 2 hours. They are brought on by a long list of things like alchol, spicy
food, stress, and overheating. I don't do any of that. They occur at
irregular intervals. I could almost set a clock by mine. They last 2 months
to 2 years. 2-3 years but up to 6 years. A few months to as long as 15-20
years. They are triggered by exercise. They are reduced in intensity by
exercise. It helps to have more fat cells which make estrogen-like hormone
out of something else. Muscle cells make estrogen-like hormone. You should
stay in a cool 68 degree room. We don't have any rooms that cool, ours are
50-55 degrees. It is worse in summer. I have only been through a winter and
hope it does not get worse in summer.
I get the impression that people have highly variable reactions to 'the
change'. Sudden menopause due to radiation, surgery, or chemotherapy,
including prostate surgery and chemotherapy, leads to more severe hot flashes.
It still hurts to sit but I don't know a good way to translate standing up,
and besides that makes my feet hurt.
Tomato sauce still tastes quite sour. I am up to 117 pounds with lots of wool
and cotton clothing, after three days of feasting, which I think translates
to about 115 without clothing or maybe a bit less and is more than I have
weighed until now in 4 years.
Tamoxifen can cause hot flashes. You can get hot flashes when you stop taking
tamoxifen. Luckily I don't have to take any drugs any more. Hot flashes
might be useful in air conditioned buildings, I suppose.
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keesan
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response 375 of 475:
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Apr 17 02:00 UTC 2004 |
Two months since the PET scan, almost 3 months since the last chemotherapy.
Supposedly it takes at least 2-3 months to feel normal. This week has been
somewhat of a watershed. I can bike again (or I could until Jim started to
move all the parts from my frame to one that is less worn out). So I am back
to walking, and today we went through Eberwhite Woods, which is full of
patches of yellow trout lily and some small white flowers which I think are
Spring Beauty (claytonia) or anemonella. Two days ago we biked to Dolph Woods
and saw bloodroot (large white flowers) and just-emerging mayapple leaves,
like folded umbrellas.
Today's trip was to bring a carton full of Chinese restaurant take-out
boxes to the local Chinese restaurant to trade for two spring rolls. They
decided to give us two free soups in addition. We walked back via another
woods near I-94, where there is a pond full of calling frogs (difficult to
hear over the highway racket) that might be chorus frogs. We startled a
garter snake. The easements next to Maple Road are carpeted with purple
violets that you can sometimes smell over the highway fumes, and a few white
ones. We stopped at the Chinese food store for vegetables. The guy at the
register knew the numbers in English (4, 3) so I showed off my numbers in
Chinese and he gave us some Chinese peanuts and I said 'thanks' and 'goodbye'
which he repeated properly.
I trudged back. One mile still wears me out, but my muscles look they
are back. I am up to 115 pounds after supper, which is probably about what
I was before I got sick last year January (112 before breakfast then). I
wonder where it has gone as I can't see any body fat and I am still short on
muscle.
This week's big progress is that my voice seems to be back. It was
not quite back on Sunday and I was starting to think it might stay weak.
I am still hoping it won't always hurt to sit and that my digestion
will eventually recover and my fingertips stop feeling numb, but these are
not serious problems. Still sore in the area over where my spleen probably
got enlarged to, nobody knows why. Scar tissue? I am going to try to do the
Huron River canoe cleanup tomorrow. We might skip the mattresses this year.
And I might just snag things with a pole instead of climbing onto the bow and
leaning over. With luck there will be turtles. Today we saw orange and black
butterflies (monarchs migrating?) and what looked like but is too early for
a swarm of fireflies (no light).
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mary
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response 376 of 475:
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Apr 17 11:54 UTC 2004 |
Were the Chinese take-out boxes used? Will the restaurant reuse them?
I'm glad you are feeling so much better. It's a long recovery.
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keesan
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response 377 of 475:
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Apr 17 14:51 UTC 2004 |
New boxes. They were in stacks with brown paper wrapping. The neighbors who
were moving had bought a bunch to use somehow at their wedding.
Today I plan to bike an old 3-speed into Kiwanis, and then walk to the river
if it is not raining. We will bring in the Japanese wordprocessor too.
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keesan
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response 378 of 475:
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Apr 18 01:05 UTC 2004 |
We biked to Argo Park where we got our canoes last year, by rather a long
roundabout route, southeast to Broadway Bridge because Jim did not want to
lift our bikes over the railing so we could cross at Barton Dam. Turns out
there is no longer a building to rent canoes from at Argo, so we had to bike
back to Broadway Bridge (past Barton Dam, which was at some point converted
to a walk/bike bridge with shallow ramps instead of just stairs/railing).
About an hour later we arrived at Gallup Park where they let us take canoes
out for two hours after the cleanup ended. Jim's first beercan had something
wriggling in it which turned out to be a crayfish. We headed towards Ypsi
because nobody else had done that stretch, but it was pretty clean already
and we only found a bunch of cans, plastic and glass bottles, assorted
plastic, and part of a kite and some candy wrappers, in two hours. We passed
up two large dead fishes and a very heavy looking rolled up wire fence that
looked more than the 650 pound limit for our canoe.
Our only interesting haul this trip was a very rusty flattened trash
can in the water, covered with mussels, which Jim got onto the canoe and then
out of the canoe at the other end. When I asked what to do with our trash
the guy said to bring it to the trash can. I said it would take two people
to bring our trash can there.
We then biked most of the way back and up a hill to the music school
for an early music concert. Jim finished off the decorative collard greens
with hummus at the reception. Great concert. I somehow made it all the way
back. Not bad for my second bike trip of the year (not counting the one to
my apartment). Jim picked up a few interesting finds on the way back (a large
yellow flashing light etc.) and then someone steered us to an after-yardsale
giveway. We passed on both microwave ovens but got three phones, a scale,
a nice warm hat and gloves and boots..... This reminds me of our last bike
camping trip when we stopped at yard sales to get dry and came back with 135
pounds on our bikes (not counting ourselves).
I can't imagine biking only for exercise, not to get somewhere.
Food still tastes odd, or maybe it is just that tortillas don't go with
Chinese broccoli and orange juice.
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cmcgee
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response 379 of 475:
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Apr 18 01:51 UTC 2004 |
I believe you are talking about Argo Dam, not Barton Dam.
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keesan
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response 380 of 475:
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Apr 18 02:11 UTC 2004 |
I believe you are right. Barton Dam is farther northwest from Argo Dam, and
has a large power plant building with waterfall and is walkable to Bandemere
Park and Bird Hills Park. I would love to go there soon. What is the name
of the third dam, where you have to cross a really bad road to continue
towards Parker Mill when biking southeast?
I hear pink is the 'in' color this year. We are both pink. Jim wore his bike
helmet with visor in the canoe. I wore my new hairdo - second time out this
year without a hat.
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gelinas
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response 381 of 475:
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Apr 18 03:03 UTC 2004 |
That sounds like Geddes Dam, Sindi.
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slynne
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response 382 of 475:
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Apr 18 19:56 UTC 2004 |
Sindi, I am really glad that you were feeling well enough to go on your
annual canoe trip. You know I couldnt resist an entry into Mnet's agora
conference. It isnt as good as some of the previous ones but I still
think you might enjoy it so here it is...
My parody of resp:378...
It is once again time for our annual spring expedition into the wild
lands. As usual, we have chosen to travel on the river in canoes. We
biked to Argo where we got our canoes last year, by a rather long
roundabout route due to obstacles the natives have put up in the past
year. When we arrived at Argo, we discovered that there is no longer a
hut to rent canoes there. What happened to it? Did a rival tribe
destroy it? We had to bike to the next point of civilization on the
river, a place called Gallup Park. Luckily, they were able to provide
us with canoes even though our arrival was late. Once in the canoe, we
could continue our annual journey to see what offerings the natives
have left on the banks of the great Huron River. Jim s first beercan
had something wriggling in it which turned out to be a crayfish and not
the traditional fratboy which one usually finds attached to beercans in
this land. We headed towards Ypsi because that is a nearly undiscovered
part of the river. However, the natives down that way are not very
original in the gifts they leave on the side of the river. We only
found a bunch of cans, plastic and glass bottles, assorted plastic, and
part of a kite and some candy wrappers. We passed up two large dead
fishes and a very heavy looking rolled up wire fence that looked more
than the 650 pound limit for our canoe.
Our only interesting haul this trip was a very rusty flattened
trash can in the water, covered with mussels, which Jim got onto the
canoe and then out of the canoe at the other end. When I asked what to
do with our trash the guy said to bring it to the trash can. I said it
would take two people to bring our trash can there. The natives are so
naive and so innocent!
We then biked most of the way back and up a hill to the
native s music school for an early music ceremony. Jim finished off
the decorative collard greens with hummus at the reception. I am sure
the natives appreciated the way Jim shows them respect by eating their
traditional food. Great concert. I somehow made it all the way back.
It was a great journey. Jim picked up a few interesting finds on the
way back (a large yellow flashing light etc.) and then someone steered
us to an after-yard sale giveway which is apparently another native
custom we haven t experienced before. We passed on both microwave
ovens but got three phones, a scale, a nice warm hat and gloves and
boots..... This reminds me of our last bike adventure in a foreign
land when we stopped at yard sales to get dry and came back with 135
pounds on our bikes (not counting ourselves).
I can't imagine biking only for exercise, not to get somewhere.
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keesan
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response 383 of 475:
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Apr 18 22:14 UTC 2004 |
Jim said not a trash can, a 50 gal oil barrel, covered with things that were
squirting at him all the way back. All these little worms were on there
slithering around. It was really interesting. They look something like
crickets without tails. Actually more like silverfish.
Someone else this year got the couch cushions, and we passed one cleaning lady
who found an unopened beer can.
Wow, we have been republished within 24 hours by the great Mnet press!
Today the curb gods put out a real antique laundry wringer that would have
fit on my concrete laundry tub, but by the time I got back from singing it
had metamorophosed into a cheap kenwood receiver. We are off to see if the
bike with mangled front wheel is still out for trash pickup.
At Shape Note Singing today I talked to someone who had intentionally lost
30 pounds and was trying for 20 more (size 2). She no longer has high
cholesterol or any need for diabetes medications. She said her mother has
very slow lymphoma and has been treated 12 times already, once for 8 months.
Her brother-in-law has gone back to school to get a nursing degree, after doing
most of the care.
Mine was a very fast sort ('rapidly fatal without treatment') but I think it
was relatively dormant since 1995, when I started having symptoms which I no
longer have. Maybe 'diffuse' means it has escaped from control by the immune
system.
Sorry we could not have had a bigger adventure more suitable for parody. It
is flattering to know what I write is appreciated that way.
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slynne
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response 384 of 475:
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Apr 19 00:54 UTC 2004 |
Oh well, you will probably be more healthy next year and you can go on
a bigger adventure then. It is just nice that you were feeling well
enough to go out at all this year. :)
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keesan
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response 385 of 475:
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Apr 19 01:34 UTC 2004 |
Yes it was nice I could bike and canoe. A real milestone.
We had another adventure on the way back from picking up the bike with the
twisted front wheel (which Jim put his head through the frame of to carry -
he is happy that it has a pair of battery-operated LEDs like what we paid a
lot of money for about 10-15 years ago). Near where the wringer used to be
was a trash can with some 2x6s, and next to that another trash can (not oil
barrel) full of interesting things like a lot of video tapes (to give to te
library sale), two half-tubes of caulk, some antibiotic cream, sunscreen,
shoes (too small for me), and half a bag of Doritos. We moved some large
metal items from the trash to the recycling bins (which were mostly full of
returnable cans and bottles). For some reason people don't think to recycle
shoe racks, aluminum pots, or curtain rods, though they weigh more than all
the cans. We are the curb gods! I even got two new sponges and a dustpan.
We left the swiveling office chair (too big for me) and a large red object
that might be a rototiller.
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gull
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response 386 of 475:
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Apr 21 16:37 UTC 2004 |
I was amused, last Sunday, to find the parking lot at Gallup Park
completely full, with people parking in NO PARKING zones and backing up
traffic, when less than a mile away at Furstenburg Nature Area the lot
was almost empty. It's doubly amusing since the two are connected by a
bicycle path.
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scott
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response 387 of 475:
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Apr 21 17:33 UTC 2004 |
Are bikes allowed on that boardwalk?
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gull
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response 388 of 475:
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Apr 22 02:42 UTC 2004 |
Not on the boardwalk, but on the path alongside Fuller Road.
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keesan
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response 389 of 475:
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May 6 06:17 UTC 2004 |
Yesterday someone commented that she liked my new haircut. I reminded her
that it was not a haircut. I have not had my hair cut since September. It
has grown back about 1.5" in the past 3 months and looks intentional now.
Still no eyelashes. Body hair is returning as well.
My voice is quite normal now, for the past two weeks.
My sense of taste is pretty normal but fresh oranges are still quite sour.
I am drinking orange juice.
I am now able to swallow iron capsules, now that my voice is back and
presumably the pharyngitis that caused it is gone. I have been taking iron
pills due to rectal bleeding which also seems to have stopped as my internal
membranes heal. My nose is still a bit runny, as are my eyes, but my saliva
does not seem sticky any more.
The main residual problem is it still hurts to sit. I think I must have
inflammation around the sit bones due to sitting so long without any padding.
I can bike, which hurts no more than sitting on a padded chair.
My muscles are not back to normal. I can't walk fast, or run, and I hold on
to the railing to climb stairs and pull myself up. I need to use my arms to
get down and up off the floor. My hands are stronger and I can cut my nails
easily now and put the toilet paper roller back without help.
My digestion is still not recovered, which interferes with sleep, as do the
continuing hot flashes every 1.5 hours or so, which is an improvement over
every 45 minutes but getting to be more of a nuisance in warmer weather.
Luckily the fad is for bare middles, which is where I seem to be warmest.
I may be the only 53 year old with my midriff bare this summer.
The sore bones also keep me from sleeping in any position but my right side.
Insomnia is also a symptom of menopause, which is one reason why I tend to
post in the middle of the night like right now. I did some reading on
chemotherapy induced menopause and as usual there are conflicting facts.
Menopause is defined as 6 months, or as 12 months, with no periods. Mine
stopped suddenly last June when I was down to 103 with clothes on. I am now
up to 113 after breakfast, which is more than I weighed for 3 years before
I got sick. Weight loss can cause loss of periods (amenorrhea) which is
temporary.
Chemotherapy is more likely to cause permanent menopause if:
1. You were close to menopause already. I don't know if I was. You are
supposed to get irregular periods for a few years first. I did not, it just
stopped due to weight loss. My mother kept a diary and her periods got
irregular for a few years from about age 54-57 and then she had radiation so
they stopped.
2. A larger total dose of cytoxan (which I had), or 6 months rather than just
3 months of drugs.
3. A combination of drugs (I had a lot of drugs, three of them generally
toxic to growing cells).
But it is unpredictable for individual cases. One site said my periods could
come back 4-5 months after ending treatment, and 6 months of no periods was
menopause. Presumably the 6 months of treatment does not count as menopause,
or as part of the total 6 months.
Another site said 12 months of no periods is menopause, and it could take 6-12
months after treatment ends for periods to come back. Again, if you include
the 6 months of therapy, this comes to more than 12 months, in fact it comes
to 18 months of temporary menopause followed by resumption of periods.
One other site said drug-induced menopause can last months or years.
If nothing changes by 12 months from the end of January this is menopause by
anyone's definition.
The sit bones are more of a nuisance than the hot flashes and I would much
rather have my voice than my periods back.
I am going on increasingly longer bike rides which is supposed to be good to
prevent bone loss. Supposedly I should worry about weight gain. I am still
trying to gain weight. I don't think weight gain runs in my family, just
cancer.
Only other remaining symptoms are that my fingertips and the soles of my feet
are still a bit numb, as is the area where I had the spleen biopsy (which got
infected), which is also a bit painful at times, usually just when I poke it.
The doctor thought this might be scar tissue and not to worry. Someone else
said it took 6 months for the nerves to recover so the numbness would stop,
and sometimes it still comes back. Nerves don't reproduce, but they do grow
new shoots. I wonder if some of my nerves died and the others are taking
over. Maybe the doctor knows this.
Excuse any middle of the night typos please.
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scott
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response 390 of 475:
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May 6 12:27 UTC 2004 |
Glad you're still with us, though.
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twenex
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response 391 of 475:
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May 6 13:42 UTC 2004 |
Indeed.
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keesan
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response 392 of 475:
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May 19 04:05 UTC 2004 |
Today I had my first of many CT scans to make sure that the lymphoma has not
returned. They remembered I did not want my barium sulfate smoothie
refrigerated and I was allowed to use my own cup (but the bottle has a large
mouth so you can drink directly from it too). I thought I was not supposed
to have any more IVs but they had me sceduled for one. I was told long
sleeves were no longer allowed, they were somehow causing problems with the
machines when people moved threw them (getting caught?). Jim let me wrap up
in his heavy flannel shirt while waiting, after the IV. I got a team of two
doing the IV and they also did my blood draw to save me a second jab and an
hour of waiting around, and took the samples where they would be analyzed,
and were all very cheery and considerate and said hardly anyone else ever
thanked them for doing such a good job. The IV hurt no more than the average
blood draw, they put it just where I asked (after phoning the technician to
make sure the left arm was okay), and hardly any blood got out that was not
supposed to. I got the new machine that takes half as long, and did not feel
like I was going to go blue in the face holding my breath.
Someone is doing a study of former and present smokers there by offering them
free X-ray and CT scan checkups, to see which works best. They have detected
a few early cancers that way but no conclusions yet.
I got in and out on time and we took our Zingerman's bread to the hospital
cafeteria and had a picnic of bread and water. At 3:30 there was no food
there to buy except hamburgers and pizza type stuff. At others times you can
buy 'three sides' of vegetables as a cheap meal. We tried to identify the
various flags hanging from the ceiling.
I biked there and back, first time I did not need to be transported. I waited
2 hours on a stretcher for my first CT scan. This time I sat and talked with
other people about their problems. I have graduated to a small pillow which
friend made for me to sit on, and Tim gave me a larger foam one today that
is higher at both sides (lower in the middle). We had a nice scrabble game
with him (Jim won, with a little help) as I was too worn out from the usual
worrying to go back to work tonight. (I don't get much sleep before hospital
visits.) Results within 3 days. I am supposed to drink a lot to get the dye
out of me. We got juice.
I have a big translation probably related to a drug company which will (if
I finish this batch and accept two more batches) pay for my medical deductible
this year. Nice to get back some money from a drug company. My 8
chemotherapies were $5000-6000 each for just one new drug.
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keesan
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response 393 of 475:
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May 20 04:45 UTC 2004 |
A doctor friend sent me the results and I am not sure what to make of
them. I was hoping for something better than this and will know more
Monday. No enlarged lymph nodes is nice, enlarged thymus is a puzzle, and
'splenic masses which .... probably represent splenic lymphoma' does not
sound good, but last time they showed up (which I don't think was in the
PET scan) the doctor said they might be scar tissue if they were not
changing in size, in places that used to have lymphoma. I do NOT want to
be doing more biopsies now.
15590798 Name: KEESAN, CYNTHIA C DOB: 06/04/1950 Sex: F Age: 53
Years User Id: 0878
Radiology and Nuclear Medicine Results Text
Status Req. Nbr. Date Source System
FINAL 3680269 05/18/2004 RIS
CT chest, abdomen and pelvis with IV contrast.
History: Lymphoma.
Procedure: Helical CT from the lung apices to the pubic symphysis
following the uneventful administration of oral and nonionic IV
contrast. Via fovea 30 cm
Impression: Comparison with prior CT dated 12/24/03.
Chest:
No enlarged lymph nodes. Interval increase in size and volume of the
thymus, without discrete rounded masses. The thymus is now much larger
than normal for the patient's age. This may represent rebound thymic
hyperplasia. Thymic lymphoma is thought less likely.
Unchanged 5 mm nodule in the lower left lung laterally on image 47.
Abdomen:
Unchanged multiple hepatic cavernous hemangiomas. Unchanged small
splenic masses which are indeterminate in CT characteristics but
probably represent splenic lymphoma. Pancreas, adrenal glands and
kidneys are normal.
No enlarged lymph nodes except a 1 cm unchanged gastrohepatic ligament
node.
Pelvis:
No enlarged lymph nodes or other significant abnormality.
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keesan
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response 394 of 475:
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May 20 05:25 UTC 2004 |
I just did some reading on how the thymus gland is atrophied (gets smaller)
due to chemotherapy and then often grows too big afterwards. It did not say
how long things took to get back to normal size.
Then I read about NonHodgkinss Lymphoma and PET scans. 56 out of 67 patients
with CR (complete remission) according to the PET scan were still in remission
653 days afterwards, and 11 had recurrences an average of 404 days later.
Of those whose PET scans showed FDG (radioactively labelled glucose) uptake
all 26 had relapses, on the average in 73 days.
So I am in the group where about 83% were okay for close to 2 years
afterwards. (It did not say what happened after that).
Then I read that 30-60% of NHL patients especially with large masses have
residual masses that are fibrosis, not tumor, and only 18% of that group
relapses (I did not see a time scale on this).
So I have a 5/6 chance of being okay for the two years, and an even higher
chance of being okay for the next year. I read earlier that my chances of
5-year survival without symptoms are about 65%, and there is a second-line
chemotherapy with 50% odds after that.
I will try to stop worrying between now and Monday so I can get enough sleep
to do a big translation for a drug company that might pay for half my
insurance deductible if I work fast until June 1. Or 30% anyway.
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tod
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response 395 of 475:
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May 20 17:20 UTC 2004 |
This response has been erased.
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keesan
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response 396 of 475:
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May 20 19:00 UTC 2004 |
How did you know my birthday is coming up? Happy birthday to you too, Tod.
I am still waiting for the bill for Jim's insurance so I can pay both of ours
at once. I just noticed that one reason they give for the annual 15% increase
is the increasing cost of drugs. One of these costs appears to be very high
lawyer bills for arguing about who has the right to make what. Eight
translators have been working on this job I am doing since maybe January, full
time. 99% of what we are translating is probably irrelevant but lawyers have
no interest in minimizing costs and time of other people as they get a
commission on it. All the jobs for lawyers are to translate 'everything'.
One job for a lawyer insisted on translating the Polish translation of an
English original authorizing a school to send transcripts, also the
instructions about how to fill out the application form for admission (they
sent ALL the school documents). Another one sent me menus and candy wrappers
- they must have cleaned out someone's desk. It was not enough to tell them
'this is a candy wrapper', they wanted every word. I don't like lawyer work.
Got to get back to cranking out 3000 words a day now about nutrient broths
and mineral salts, a welcome change from profit analyses.
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tod
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response 397 of 475:
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May 21 23:03 UTC 2004 |
This response has been erased.
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klg
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response 398 of 475:
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May 22 02:30 UTC 2004 |
Drugs manufactured in Canada?
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