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| Author |
Message |
| 25 new of 480 responses total. |
keesan
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response 245 of 480:
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Nov 10 01:02 UTC 2003 |
Our Chinese visitor emailed that she is not coming today (after we waited all
day) and it will be some time after the 19th, which is right in the middle
of the week I don't want visitors. I hope she can wait a week. I never
expected to be running my life in 3-week cycles.
I think I have figured out why I get a headache this time each cycle.
Last weekend was my low immunity, which knocked out my T-cells that fight off
viruses (along with the rest of my immune system). This let the viruses that
happen to be hanging around all the time in me multiply for a few days,
causing three days of diarrhea eventually (Wed-Fri) while the lymph cells
started to recover, and by Saturday I had lots of lymph cells which
accumulated in my lymph nodes as swollen glands causing a headache. But my
immune system is recovering faster or not going down as far each time (no
thrush expect from now on) so the headache is for fewer days each time and
maybe I won't have one next time at all.
THis could be totally incorrrect. I will have a chance to test it.
Watched a movie in which the pet dog got cancer and refused to eat so the
owners killed and buried it. I promised Jim to eat supper.
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keesan
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response 246 of 480:
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Nov 10 16:29 UTC 2003 |
Headache came back at night. I have a second theory about it. I get similar
symptoms (loose stools for a few days then headache) just before and during
my period, so perhaps they are due to estrogen levels dropping and then
rising, as the chemotherapy drugs kill off any developing ovarian cells then
more start to grow. The confusing part of this is Jim always starts sneezing
and taking hot baths around the time I get the headaches.
So I am having not only drug-induced menopause but also drug induced symptoms
similar to those I would get without having menopause. Also cyclical bleeding
the week of the prednisone which today has finally stopped (during
defecation). I hope until next treatment. It started a week before the last
one due to the barium sulfate for the CT scan. I am taking iron pills. Maybe
this is why my hemoglobin was a bit lower than last time.
I can still (or again) feel friction (not just pressure) on the middle of my
left palm and the arch of my left foot. Not my right palm. The pharmacist
keeps warning me that the next development could be dragging feet.
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keesan
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response 247 of 480:
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Nov 10 23:29 UTC 2003 |
Today we walked to the Maple Village shopping center and back. Jim found a
treasure while picking up trash - a yellow solar-powered LED light that only
needs something plugged into the two plug ends, such as a battery. There is
always lots of trash wherever we walk. The A2 News dumps more every Tuesday.
A friend stopped by to bring me walnuts (in the shell, good hand exercise)
which taste slightly salty and oranges (in the skin) which taste more sour
than I recall oranges tasting. She wanted to bring me pie and chocolate bars
and was disappointed that I don't seem to have a craving for sugar. So many
people would like to feed me the foods that they wish they could eat without
gaining weight.
I think things are tasting slightly more normal today but my tongue still
feels like I ate a couple of raw pineapples and the orange stings a bit.
Our friend described one allergy to something or other that lasted a year and
caused her to lose her fingernails. The skin peeled off the bottom of her
hands and feet. Sounds like a leukemia patient described her reaction to
daunorubicin pills. Much worse than laryngitis.
Our Chinese visitor is coming just after my last prednisone next cycle and
will stay at my apartment until I am sleeping better and probably send over
home cooked meals here. We have to get the kitchen back to usable condition.
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keesan
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response 248 of 480:
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Nov 11 02:34 UTC 2003 |
Apparently we have to put together a few computers before working on making
my apartment livable again. Jim has been trying to figure out why the 300MHz
curbside find won't work with any CD-ROM drive using any controller or cable
- anybody have any ideas? I have decided to use this computer for DOS, in
which case it does not need a CD-ROM drive - this will save a lot of time
trying to fix the drive. We have another 500MHz curbside find that won't take
ISA cards (the case blocks you from putting them in the ISA slots - clever
of Compaq) so will only work with either an external modem (which Jim has
already wasted days on) or a pci winmodem, so that is going to be Jim's Win98
computer to use with the CD-RW drive and scanner. We have to figure out what
is wrong with three other computers given to us recently - probably just dead
CD-ROM drives and super-slow onboard video - and then decide how to work
around that. This will save making lots of decisions.
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keesan
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response 249 of 480:
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Nov 11 19:15 UTC 2003 |
Today I can feel a little bit with the middle of my right palm, which leads
me to believe that once I finish therapy I will be one of the lucky 'fair
percentage' of people who recover from the nerve damage.
For Jim's birthday (this week) I offered to help him set up a Win98 and a
Slackware 7.1 computer. We just ordered the 3-CD Slackware (installation
files, source code, and something else) for $1 plus $5 shipping instead of
downloading, because the compiler is 120 M and it would therefore cost more
to download (at 50 cents/hour). Something to keep me from being bored until
January when I hope to be working again.
I have been having a harder time finding books to read at the library that
I can walk to. This time I looked in the Russian book section and found three
Harlequin romantic novels in translation. The translation is interesting but
the plot is not. The main library is twice as far.
Opera 7 lets you choose an 'accessible' screen without images (large black
typeface, pale green background) or a lynx-style text-only screen.
I wish I were strong enough to help clean the gutters. Can't risk it.
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keesan
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response 250 of 480:
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Nov 12 15:51 UTC 2003 |
Last night we walked to Zion church to a talk about computers and machine
embroidery. The speaker started by removing her jacket 'because of hot
flashes' then telling us she had had a hysterectomy (probably also
ovariectomy) and that she had been 'child-abused' and that her mother and
grandmother had breast cancer and she was sure she had a 90% chance of it.
She brought in her 'breast cancer' dress with cutouts to represent a
mastectomy and machine embroidered text about breast cancer arond the middle.
Then showed us how to trace a scanned pattern with a mouse after choosing the
type of stitch and color for each area, which was time consuming but you could
make a painting into an embroidery by then setting the machine to embroider
from a floppy disk, and changing the thread whenever the color was done.
She said half the screen on her computer went blank recently so she needs a
new computer. Jim said it must be a laptop - we have never seen half a screen
go blank on a regular monitor.
They had refreshments. I ate a bit of cheese and crackers and tried the
grapes, which tasted horribly sour, and a bite of apple (ditto). The water
fountain was broken, the cheese was salty as were the crackers.
Today we are picking up the CD writer software from the neighbor for whom Jim
dropped off the 50 CD-R's. After I answered his email, Jim remembered that
we also need to get back a few of them to learn on.
Jim was so happy that this is all in progress that he went out and cleaned
the gutters and then fixed the hallway light.
Every cycle my spleen starts to feel sore (mostly to the touch, but also if
I move) about 2 weeks after the chemotherapy. I wonder if this is because
my T-cells have recovered enough to be killing off all the antibody-labelled
B-cells from two weeks ago. Maybe the swollen glands in my throat a week ago
are also related to that? I did not have them the first cycle when I did not
take Rituxan. I will probably never know what causes all these symptoms.
The spleen is on the left side started just below the ribs and extending
beneath them. Sometimes my ribs also hurt around this time or before.
The liver is somewhere lower. I should look at an anatomy chart.
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keesan
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response 251 of 480:
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Nov 13 00:21 UTC 2003 |
Today's exercise was not a walk but two hours spent cleaning up my apartment.
Jim was too busy during the month he cooked there to do more than wash the
dishes. I was too tired or too bedridden from May through August and have
not lived there since. The kitchen table no longer is covered with a computer
and tools. The sink is as white as a 1920 porcelain and cast iron sink will
get. The bed is now visible and the sheets are there for my guest to put on.
Jim managed to use almost every bowl I own. I will never understand how he
managed to take the out but did not know where to put them back. I think
dyslexics have selective memories.
The computer workshop has moved from there to here. Polygon is supposed to
bring over a computer that won't boot into Windows tonight, and another grexer
wants to learn how to take computers apart tomorrow night, and we have orders
from them for working computers. No deadlines, which I cannot yet handle ;=)
We are recycling anything slower than a P133 - anyone want the parts?
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keesan
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response 252 of 480:
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Nov 13 01:28 UTC 2003 |
Totally off topic (not that I am often on topic) but Jim discovered that the
CD-ROM drive in one computer will read stamped CD-ROM disks, and some CD write
disks but not others. Why?
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keesan
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response 253 of 480:
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Nov 13 04:10 UTC 2003 |
The drive was reading one CD write disk only some of the time. This is
apparently a symptom of the cable not being plugged all the way in.
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keesan
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response 254 of 480:
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Nov 13 13:36 UTC 2003 |
How does one alter a Win2000 installation so as not to require a password,
without knowing the password.
Today I figured out why I had pain in the spleen area on both sides while I
have a spleen on only one side. This is actually sore muscles from cleaning
up the apartment. I also have sore hands from scrubbing the sink. Cancer
causes you to lose muscle. I still cannot easily cut my toenails with a
clipper. I am cracking walnuts for exercise.
As an experiment in how to eat foods when things taste sour, we made me some
pomegranate juice out of syrup and a bit of honey. The syrup is naturally
sour, so even if it tasted more sour than usual it did not bother me. Then
we added some salty pickled lime to my supper so that I would expect supper
to taste salty and that worked too. I will be eating lots of pickled lime
for a while.
The tops of my legs are sore, probably from crouching while cleaning. I
should do more of this as I am now strong enough to get up again.
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twenex
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response 255 of 480:
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Nov 13 17:33 UTC 2003 |
Hi Sindi. Sorry that this has been my first for a long while. Glad to see
you're feeling stronger.
Sounds like the sour + salt experiment worked a treat; brill!
You might be able to copy the registry of a vanilla W2K installation w/o
passwords enabled to your W2K machine. If you need to know how, I'll get back
to you as I'll have to look up the whys and the wherefores (not to mention
the how) myself.
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keesan
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response 256 of 480:
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Nov 13 18:05 UTC 2003 |
We don't have any other Win2000 installations, just one that came on a
computer given to us (via some other people) that requires a password.
Perhaps you can check your registry and see where the password is kept, and
also let us know which file is the registry and where to find it.
Jim's solution is to pass this computer along to a neighbor who also just
acquired a used Win2000 hard drive and let him figure it out. Along with the
56K winmodem that would not work with at least 5 enormous downloaded drivers.
I am supposed to go for a walk today. Should be fun in the snow.
First some hopefully fattening macaroni and cheese. The sour cheese tends
to drown out the sour macaroni flavor. 110 today with lots of warm clothes.
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keesan
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response 257 of 480:
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Nov 13 20:08 UTC 2003 |
Not a whole lot to look at on our walk besides the snow and some fat
squirrels. The only deciduous trees with leaves on them are the katsuras.
I just got a bill from U of M Hospital for another $3000. I had paid $4500
and thought I paid $6500 total. So called the insurance company and they
explained that I pay NOT the first $5000 and then 30% of the next $5000, but
30% of the next $10,000, or a total of $8,000. Time to cash in a savings
bond. Next year should be about $5000 plus 30% of $3000 for four CT scans.
Looks like medical expenses will total about half my earned income for the
next few years. I have to learn to fill in Schedule A.
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twenex
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response 258 of 480:
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Nov 13 21:16 UTC 2003 |
I was thinking of the "friend of yours who has w2k installed" route. I've no
objection to giving you one of our registries, but there are two potential
problems:
To be safe, you need to make sure said registry came from a machine with no
software or changed settings (the "vanilla" referred to in #255
We have WinXP - which I'm not convinced won't be a whole hell of a lot of
trouble if you put its registry on a w2k box.
Still, I'll poke around and let you know the result tomorrow (Friday).
Schedule A?
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gelinas
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response 259 of 480:
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Nov 13 21:41 UTC 2003 |
(Schedule A of IRS Form 1040 is Itemized Deductions. It's used when listing
every deduction will result in a smaller tax bill than the standard
deduction.)
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keesan
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response 260 of 480:
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Nov 14 03:34 UTC 2003 |
You get to enter medical expenses on Schedule A if they are more than 7% of
your income. This year my medical expenses are more than my earned income.
Then you subtract the total on Schedule A from your total income. If you
don't have anything to put on Schedule A, you subtract $4500 instead.
The Win2000 computer has gone to a friend who has a Win2000 hard drive but
also no installation files, and who says he knows how to edit the registry.
We also passed along two winmodems for him to play with. He got one of our
previous failures working but I think one of these is dead.
Tonight we combined parts from a PB 100 and a PB 233, on the theory that the
older CD-ROM drives and sound cards were built better and will last longer.
Not only that, but Windows actually comes with drivers for SB 2.0, and not
for all the fancy new pci sound cards.
I just got a nice 'speedy recovery' wish from a complete stranger who ran
across my website and also happens to translate Russian. I have been getting
lots of nice emails from friends who keep checking up on me. My turn to send
postcards to a few older friends who are in nursing homes or hospitals.
It helps to add peanuts to the funny-tasting rice because nuts all seem to
taste normal.
This week my fingers are shredding and getting a bit infected around the nails
- so far two fingers and a thumb. Last time 7 fingers were infected. I
cannot figure out why this waits 2 weeks after treatment to happen. It is
the skin just behind where the nails grow. My nails are growing fine. I was
supposed to expect problems with the nails.
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twenex
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response 261 of 480:
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Nov 14 11:59 UTC 2003 |
Re: schedule a: thanks. medical expenses: ouch.
That infection doesn't sound too rockin' either.
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keesan
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response 262 of 480:
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Nov 14 16:35 UTC 2003 |
]The infection is minor, more of a scientific curiosity.
The missing piece of case on the P233 was identical to the one on the P100.
Today my left palm has more sensation that for the past few weeks. I get to
enjoy this for three days, along with increased sleep (I have been waking up
every 2-4 instead of 1-2 hours) and a tongue that does not feel like I just
ate a raw pineapple, and things are starting to taste closer to normal. This
must mean the chemotherapy is wearing off and I am starting to regenerate.
Same thing happens every cycle. Monday I get more chemotherapy. Four weeks
from now I will be done with the drugs and only one more IV to go this year
(unless of course they decide I need 8 instead of 6 sessions).
The more accurate scale is a few pounds lower than the one I have been using
and says I weigh only 103.5 pounds, with clothing, before breakfast. Three
weeks ago at the hospital I weighed the same after breakfast. The doctor said
at least don't lose weight when I had gained only 1 pound, but I think they
are disappointed. Some of what I eat must go into replacing all those cells
killed by the chemicals. No wonder I am not able to walk any farther as I
have not been eating enough to make more muscle.
If I contine gaining only 1 pound every 3 weeks, it will take six months to
get back to the 112 I weighed last January. Got to work harder at this.
Today is Jim's birthday. Maybe we can get his CD-writer working for it.
Can you install Win98 over Win31 to keep the settings for the sound card?
This is an odd one, used by PB, which is SB 2.0 (8-bit) with a 14.4 modem
which we are encouraging the recipient to use for dialing grex directly as
the other modem will be a winmodem and it is much faster to dial from DOS.
But he would need a phone line Y splitter.
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keesan
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response 263 of 480:
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Nov 15 03:01 UTC 2003 |
I must have read the scale wrong (a 3 for a 5). It is a nonilluminated grey
on grey digital model, and there is only a 2 lb difference between scales.
I weighed 108 after eating on the lighter scale. I still don't know where
the weight is going. My hip measurement is 2" less than it used to be (down
from 35.5 to 33.5") and my waist measurement has not changed (29") I can
still reach around my thighs with two hands and touch thumbs and middle
fingers. I bet no other grexer can do that. I should try calculating body
fat percentage from the pinching the underarm method and report back.
Tonight the refreshments at the Kelsey Museum tasted nearly normal (except
for the horseradish cheese) so we went to Dinersty for Jim's birthday dinner
and had water spinach with fermented tofu sauce, which tasted about the way
we expected it to taste (not that we have had this combination before).
I looked at a few books on cancer at the library and learned that lymphoma
is more common among Russian-origin Jews. I wonder why. Maybe we produce
more B-cells to fight off the bacterial infections in ghettoes? What sorts
of diseases are bacterial other than strep throat? I also learned that many
people on chemotherapy are worried about gaining weight. There were two
copies of one paperback on how to cope with chemotherapy, with a large section
on nausea and also one on insomnia. Apparently some people lie awake
worrying. My problems in sleeping are more due to boniness. They did not
deal with that as it is not a symptom of chemotherapy. I left the books there
and brought home more cheering subjects such as environmental degradation,
a scientific explanation of diseases related to mad cow disease, and a history
of the first 3 billion years of life on earth.
Jim got two books on CD and realized that you need more CDs than you do
cassette tapes to record a book because you can record books on tape in mono
and get up to 240 minutes per tape, but CDs only 80 min per disk. And
he does not know of any way to make the CDs talk twice as fast like he does
with the tapes. Can you record a CD to hard disk and then listen to it
faster? If so, can you lower the pitch? Maybe the books for the blind people
will special order CD players that play half as fast.
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rcurl
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response 264 of 480:
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Nov 15 06:44 UTC 2003 |
Some bacterial diseases:
Anaerobic (Bacteroides fragilis) Infection
Anthrax
Aquarium Granuloma
Bartonellosis
Cancrum Oris (Noma)
Cellulitis (Aeromonas)
Cellulitis (Streptococcus)
Chancroid
Cholera
Diphtheria
Erysipelas
Erysipeloid
Gas Gangrene
Gonorrhea
Granuloma Inguinale
Impetigo
Legionnaire's Disease
Leprosy
Leptospirosis
Ludwig's Angina
Lymphadenitis
Meliodosis
Meningitis
Pertussis
Phagadaena Tropical Ulcers
Plague
Pseudomonas Infections
Rhinoscleroma
Salmonellosis
Scarlet Fever
Shigellosis
Staphylococcal Infection
Syphilis
Tetanus
Toxic Shock Syndrome
Tuberculosis
Typhoid
Vincent's Angina
Yaws
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twenex
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response 265 of 480:
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Nov 15 11:25 UTC 2003 |
...Republicanism?
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keesan
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response 266 of 480:
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Nov 15 11:39 UTC 2003 |
Now I know why I have not had anything on this list for a few years - I had
an excess of B-cells to fight off all the bacteria! I think infections of
the mucus membrane of the mouth are bacterial and I was getting sores in my
mouth the first three cycles when my B-cells were killed off by the chemo.
Yesterday evening grapes tasted normal (slightly more sour) but before some
grapes at a reception tasted awful. I tried an orange and it tasted more
awful. Jim tried it and pointed out that it was spoiled. Spoiled oranges
don't normally taste this awful to me. More bitter than sour. Is this just
due to losing some taste buds, or might I have become more sensitive to the
byproducts of whatever organism spoils fruit (some fungus? - there was no
blue fuzz on the skin, just that taste). People with less resistance would
benefit from avoiding spoiled foods.
This seems to be one of these mornings when I don't get back to sleep.
Maybe if I climbed lots of stairs (three times up and down?) I would get more
tired and sleep better?
Scrapie/BSE/kuru/Creutzfeld-Jacob disease (caused by prions, a type of protein
that folds wrong and causes other proteins it encounters to do the same)
somehow affects its victims by causing them to lose appetite and waste away.
I wonder how it does this. Cancer does the same. Appetite suppressant.
If you are a sheep, you are likely to get scrapie if you eat the placenta from
a ewe with scrapie that has given birth. It is not destroyed by normal
sterilization techniques or by the formaldehyde used to make vaccines from
attenuated viruses so a bunch of sheep got scrapie from a vaccine against
something else. I am glad not to be a sheep.
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rcurl
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response 267 of 480:
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Nov 15 18:29 UTC 2003 |
Prions destroy neurons, and the symptoms (and death) follow from that.
There has just been a report of an experiment in which mice were made
"immune" to prions by genomically changing them so neurons expressed an
enzyme that destroyed the *normal* prion protein. Without the normal
protein, the prions can't misfold anything, so neurons were not destroyed.
However at the same time the prions in other cells created the misfolded
protein, but that created no symptoms: other cell types were unaffected by
misfolded prion proteins. A rather ingenious experiment. This doesn't
provide directly a practical vaccine, much less cure, of course, but tells
a lot about the process of this disease.
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keesan
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response 268 of 480:
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Nov 15 20:23 UTC 2003 |
Apparently the normal prion protein is not essential, as someone was also able
to breed mice without the gene to produce it and they seem okay. If you don't
have that protein, it cannot be converted to prions. The protein resides in
the cell membrane until it is converted to the misfolded prion form, then the
cells die and the protein gets loose and converts proteins in other cell
membranes. The prion form of the protein has a section converted from
irregular to flat-sheet, which renders it inaccessible to the enzymes that
normally break it down, so it accumulates.
About 100 people (as of 2002) had died of BSE. About 100 people a year die
of salmonella poisoning in Germany, frequently from eating factory eggs.
Genetic engineering is saving people from this disease because it is no longer
necessary to process pituitary glands from dead people. One in 10,000 people
die of Creutzfeld-Jacob disease and companies used to process 20,000
pituitaries at a time to make human growth hormone. I think genetically
engineered bacteria now make it instead. They also make the drug which is
killing my B-cells (Rituxan). (Someone wants to chat now).
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keesan
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response 269 of 480:
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Nov 16 02:44 UTC 2003 |
This cycle I have only four fingers with only a little bit of shredded skin
and only one was bleeding at all. Last time I had 7 total that were more
infected. I still don't know what causes this.
This evening I timed the hot flashes. Every 45 minutes exactly. I could
almost set a clock by them. At night I wake every hour feeling hot so perhaps
they slow down then.
I put together a list of side effects for the doctor and was surprised to find
at least 15 side effects other than blood counts going down. Some of them
are no longer recurring this cycle. Some occur only the first week (with
prednisone) and some only the last week (pain in the spleen and ribs). The
laryngitis gets worse around the second week then a bit better each time.
The odd taste gets worse a few days after therapy, then somewhat better by
the end of each cycle, but overall is getting worse, along with numb hands.
The 15 side effects do not include those of prednisone.
Non-Hodgkins lymphoma is more common after age 50 and may be caused by Epstein
Barr virus but they tested and I don't have that. They tested for lots of
viruses and I don't have any of them. I wonder why they tested.
One more 'normal' day before chemo on Monday. Last time they said they did
not have a free slot for me but would notify when they found one. I have a
12 pm doctor's appointment and presumably a blood draw before that and they
will have to find a spot for me after those.
Today we did computers instead of walking. Jim is fixing polygon's Windows
problem by reinstalling Win95, using the serial number from the original
installation which he found in one of the files. The monitor that had
some problem or other looked like it was going to explode (and sounded that
way too) so Jim unplugged it. Larry picked up a computer we put together for
Sarah to play games and learn to write on, and when she learns to write we
will add a modem and Kermit.
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