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| Author |
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| 25 new of 257 responses total. |
keesan
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response 180 of 257:
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Sep 14 23:32 UTC 2003 |
Instead of typing !ignore I can edit the .cfonce file but there was some way
to do pico without line wrapping -what is that? -w?
Jim went out to pick tomatoes and peppers to feed us tomorrow.
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dah
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response 181 of 257:
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Sep 14 23:49 UTC 2003 |
This is not the technical problems item, dearie.
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glenda
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response 182 of 257:
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Sep 15 00:30 UTC 2003 |
It may not be the technical item, but it is her item. I would say she can
discuss anything she would like to discuss. With or without your approval.
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dah
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response 183 of 257:
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Sep 15 00:57 UTC 2003 |
Yeah, sure, we all can, but not without possibly violating the rules of TACT.
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keesan
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response 184 of 257:
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Sep 15 02:01 UTC 2003 |
Has anyone ever needed approval to say something on grex? If so, all twits
have my approval to say anything they like but don't expect any response from
me as I won't see it.
Where did/do other people's grandparents live?
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slynne
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response 185 of 257:
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Sep 15 02:03 UTC 2003 |
I only have one living grandparent, my mother's mother. She is almost
90 and lives in Farmington Hills.
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gelinas
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response 186 of 257:
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Sep 15 04:23 UTC 2003 |
My maternal grandparents lived in Georgia, near Fayetteville and Jonesboro,
while my paternal grandparents lived in Massachusetts, near the Rhode Island
line. That is, that's where they were living when I knew them; they'd lived
other places earlier in their lives (all in North America, though).
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polygon
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response 187 of 257:
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Sep 15 04:40 UTC 2003 |
None of my grandparents are living.
My mother's parents lived in Chicago during their working lives, but I
never saw any of the places they lived there. Around the time I was born,
they moved to Fontana, Wisconsin (near Lake Geneva), and lived in a
smallish ranch house on a parklike piece of land with many trees.
My father's parents split up about 1930, and I never met his father. His
mother (my grandmother) lived with her parents before and after that, on
the East Side of Manhattan, NYC, above my great-grandfather's shoe repair
shop (he owned the building, which is long gone now). My grandmother
remarried in 1942 and lived for many years in an apartment on Grand
Concourse in the Bronx, NYC. My great-grandfather lived with her until
his death in the 1960s. Later, she moved to another apartment in a
complex in Manhattan called Stuyvesant Town. Still later, she moved to
southern Florida. The apartment in Stuyvesant Town is the only home of
hers I ever saw.
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tod
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response 188 of 257:
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Sep 15 06:22 UTC 2003 |
This response has been erased.
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davel
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response 189 of 257:
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Sep 15 11:53 UTC 2003 |
My father's parents lived in Wichita Falls, Texas; my grandfather owned a
bookstore which still had his name some years after he'd sold it. (When I
met some folks from there in the late 60s they brought it up.) My grandmother
died (breast cancer) in the late 60s, my grandfather (ultimately results of
many strokes, I think) in the 70s.
My mother's parents lived in Kirkland, TX when I was young; at that time this
was a town with official population somewhere around 10. My grandfather had
been postmaster there for many years. The house did not have indoor plumbing;
there was a cistern for water, & I can remember a truck delivering water to
it during a dry summer.
When I was maybe 9 or 10 they moved to Childress, population 10,000 or 15,000
or so.
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scott
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response 190 of 257:
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Sep 15 13:23 UTC 2003 |
"man pico" says that -w disables word wrap (as astartup argument), so maybe
remove that from your .cfonce line with pico?
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edina
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response 191 of 257:
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Sep 15 17:49 UTC 2003 |
My living grandparents live in Tecumseh.
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keesan
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response 192 of 257:
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Sep 16 13:13 UTC 2003 |
Apart from the obvious case of the house without the indoor plumbing, do/did
your grandparents live very differently from you? Did they like to do things
the way they did them when they were young, or did they prefer to be modern.
My grandfather was certainly not the modern sort but his second wife (after
my grandmother died in her 70s of a heart attack) tried to be modern. They
got new bedroom furniture around 1970 (the other furniture was probably 20s)
which included a couple of armchairs and a couch that stayed covered in
plastic to protect them (so every sat on the old couch instead) and which
nobody wanted when they died. She would wear a purple sweatsuit with the
words 'World's Favorite Grandma' along with her hairstyle and earrings from
the teens (they were both born around 1895). She and he were an odd match
- he was a peasant type and she tried to drag him to the opera. Neither of
them were ever interested in modern prepared foods. He worked as a baker,
and before that a suitcase maker. He made us all alligator skin belts in the
fifties before that was incorrect, and knew how to sew and knit his own
sweaters. In the nursing home he did needlepoint paintings.
Back to topic - the second chemotherapy was entirely uneventful, none of the
promised side effects, ended in 6 hours instead of 8, in a nice private room
with a bed. The pharmacist heard of one other case of my throat/voice problem
(the med students have been collecting cases for him) which he thinks, having
checked out the side effects for all my drugs, is due to one of the chemo
drugs (one that is red and turns urine pink), with onset 10-15 days after
(matches mine) and the med students did not say if it ever cleared up.
I come back for the third treatment in October, and only one blood draw in
between. Next time I sit in a reclining chair that is too big for me in a
room full of TVs. I will try drowning out the noise with a radio and
headphones. This will hopefully also distract me from the mild pain in my
hand from where they put the IV in a larger vein as the stuff is caustic and
needs diluting. The nurse wears a plastic cover for protecting her clothing.
They gave me lots of Tylenol and Benadryl in case I reacted to the drug
Retuxan (Retuximab) which they just added, an antibody specific to
b-lymphocytes (the cancer, but I also have other b-lymphocytes that are not
cancerous and are part of my immune system, however I will remake those).
They could not do that the first time because I was already having to deal
with a lot of lymphocytes being killed. They say the first time went really
well - my lymph cell count dropped from very high to normal. So this meant
a lot less cells to reaact with the antibody and cause fever/chills or low
blood pressure. Next time should be even fewer so they can infuse faster and
I can be out in 5 hours.
They have a little patient kitchen with juice, bagels, cupcakes and microwave
ovens so we can cook lunch next time. Jim wanted to try one of everything.
I have no obvious symptoms the next day other than that I slept 6 straight
hours instead of 40 minutes at a time. I think I need another 2 soon.
I am still hungry. The current instructions are to use the Nystatin for
thrush only the second week or as needed (as opposed to previous instructions
of every day for the next four months, or 4x first week 2 x second two weeks).
Four days of prednisone (anti-cancer) with prilosec (protection against
prednisone causing stomach bleeding). I should send Jim off to kmart for it.
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keesan
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response 193 of 257:
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Sep 16 22:22 UTC 2003 |
Prednisone was available at K-Mart only in 20 mg form. I needed 100 mg/day
so they sent me to the nearby Village Pharmacy which had 50 mg (cheaper that
way too - it is less than the $10 which it would have cost with insurance).
If possible, prednisone (2 tablets) tastes even worse in applesauce than
Tylenol (2 tablets). I chased it down with milk and then bread and cheese.
Only three more of these this cycle. It was supposed to make me agitated but
I went to sleep for an hour instead. I don't think I am caught up yet on
sleep from the hospital.
My doctor friend called and said to drink lots of fluids today to wash out
the chemicals. I don't know why I weight 5 pounds more than yesterday as they
only gave me about a pound of chemicals, but one of them may be causing me
to retain fluids. Prednisone did that to my mother but I weighed the extra
five pounds before taking it. They said they infused something similar to
it yesterday (which the nurse assured me was for nausea - nobody seems to
agree on things).
We took a stroll to the corner and the 2% grade got me very out of breath.
I am about to find out the nanme of the red stuff that is changing my voice.
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keesan
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response 194 of 257:
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Sep 17 13:38 UTC 2003 |
The five pounds weight gain is probably from the prednisone, as is the fact
that I cannot sleep. Oh, well, only three more days of it and it is making
me hungry. The other chemicals supposedly will suppress my appetite.
The new drug is spelled Rituxan (generic name retuximab I think) and has only
been approved for general use since 1997. It specifically targets large
B-lymphocytes which display CD-20 protein on their surfaces (95% of them do,
hopefully including minde). The cell makes this protein to let the body know
that it is cancerous. The drug is an antibody that attaches to this protein
and then the body attacks the whole complex.
They started me off at Monday's chemotherapy session with this new drug, after
first giving me a private room with a bed in case I had side effects which
were expected to be fever/chills and swelling. They gave me Tylenol and
Benadryl in case of side effects. Tylenol tastes terrible mashed in apple
cause. I cannot swallow pills due to my throat problem (which the pharmacist
looked up - due to one of the chemo drugs, starts 10-15 days after
administration, only one other case known to him but the med students who
reported it did not say if/when it clears up). I have a high-pitched voice
and a very dainty cough and sneeze. There is a small patient kitchen that
provides juices and cupcakes and bagels (Jim tried them all) and the cranberry
juice took away the awful taste. I had no side effects other than being
sleepy from the Benadryl. They kept me awake taking blood pressure readings
every half hour because another side effect is blood pressure dropping.
At the doctor's appointment before the infusion they informed me that my tumor
(mass on the spleen) could no longer be felt (I could not feel it either)
which was unexpected and very good news. The tumore was composed of
lymphocytes. My blood lymphocyte count had dropped from very high to low,
then back to normal (the normal count presumably being regular noncancerous
lymph cells made by my bone marrow - they are part of the immune system).
I am a big success but need to go through all 6-8 cycles. They will give me
anothe CT scan of the abdomen after 3 cycles.
I am starting to get price lists for these procedures (to be discounted by
PPOM before billing). CT scan about $2500. Spleen biopsy including two $1000
analyses and $1425 for 7 hours in the recovery room about $5000. The
insurance company pays all but $6500 of this. No bills yet for the hospital
room (about $10,000 for 10 days) or all the test and procedures done in the
hospital. They will let me wait for it to reach $6500 and pay all at once.
The needle for the biopsy was only $350. The biopsy took 20 minutes. The
recovery room included a box lunch (turkey loaf) which Jim ate for me and one
free Tylenol.
I go back in 10 days for only one blood draw this cycle, then another
chemotherapy in 3 weeks which will go faster as they started the Rituxan off
very slowly this time in case of side effects. I need to also take prednisone
pills for four days which are keeping me from sleeping.
I will post info from the web about the three chemotherapy drugs which they
infused (after breakfast - the prednisone also makes me hungry). With
expected side effects.
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keesan
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response 195 of 257:
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Sep 17 17:32 UTC 2003 |
CHOP is the standard cancer treatment and I have not figured out the acronym
as it consists of:
Cytoxan (the C) - generic cyclophosphamide. This drug may cause permanent
sterility. At age 53 I hardly care. My periods suddenly stopped when I got
down to 103 pounds. I have not looked up other side effects yet.
Adriamycin (doxorubicin) - the H? - this is the red one that stains urine pink
and has affected my voice. It is injected directly from a syringe into the
IV. It interferes with DNA replication and may cause nausea for up to a day
(it did not for me). It causes partial or complete hair loss including brows
and lashes (so far I am only losing a few hairs at a time from the head)
starting 3-4 weeks after the first treatment (on schedule). I should avoid
direct sunlight for a few months after the last treatment (should be easy to
do in the fall and winter). The primary effect is to reduce bone marrow
activity - lowers the number of platelets (which prevent bruising and bleeding
- probably why I had blood in the nose) starting in about 7 days, and also
reduces the production of red blood cells and the neutrophils which fight
infection. I should avoid crowds especially from days 7 through 14. This
will make me tired for up to a year after the final treatment.
Vincristine (oncovin - the O) which is what is making my fingers tingle due
to nerve damage. One site says this will go away, another that it may be
permanent. If I am lucky it will stop in a few weeks (after the last
treatment?).
Prednisone (the P) which I take for four days as pills and it seems to be
responsible for a 5 pound weight gain (fluid retention) and generally
jitteriness when I want to sleep. I am about to take another one after lunch.
It tastes even worse than Tylenol (in applesauce).
The Rituxan is not part of CHOP. It can cause severe reactions if you are
not lucky. I was quite luck and had no reactions, possibly because there are
so few cancer cells left for it to attach to.
I was going to look up more info on the other drugs when we started having
brief power interruptions and I gave up after the second. Did other
neighborhoods also have three power interruptions this week?
The doses are calculated by body surface using tables of weight and height,
which is why they keep measuring me. I had two syringes of Adriamycin and
500 ml Rituxan.
If I had a more advanced stage of cancer (high-grade) they might be giving
me enough of these poisonous chemicals that it would increase my risk of
developing other cancers over the next 20 years - lung, grain, kidney,
bladder, and Hodgkin's disease. These are all caused by the Adriamycin.
Lunch is ready. I have to gargle with salt water whenever I eat or drink,
or maybe that is only the second week. My teeth have stopped hurting perhaps
due to increased immunity or perhaps due to not having to swish the thrush
treatment around four times a day (the 33% sucrose). It was hurting the roots
of my teeth even to drink room temperature water for a while.
Adriamycin blocks topo-isomerase, whatever that is.
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keesan
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response 196 of 257:
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Sep 17 22:35 UTC 2003 |
Prednisone side effects: retention of sodium and fluids (5 pounds) and muscle
weakness. I did not walk all the way to the corner today. Potassium loss
- I am eating lots of fruit and vegetables.
Cytoxan side effects - nausea (I was lucky) and like the other drugs bone
marrow depression, hair thinning or loss. I should drink a lot in the first
24 hours to avoid bladder irritation.
Vincristine - abdominal cramps and constipation - drink a lot, eat fiber, mild
exercise (how do I exercise when I have muscle weakness?). Tingling and
difficulty with buttons. May also cause hair loss, fatigue, bone marrow
suppression, reduced fertility, and reduced sense of taste. (Sort of hard
to tell if I can taste things with fuzz on my tongue the second week, but this
week seems fine).
I also read about different grades and stages of lymphoma. You can have early
stages for a long time without symptoms (stage 2 is enlarged lymph nodes in
2 or more regions, stage 3 enlarge spleen which I had, stage 4 the liver is
affected - which I don't think mine was but I will ask). Low-grade is easiest
to treat, I might be intermediate grade. NHL - non Hodgkin's lymphoma -
affects 50,000 Americans every year with incidence increasing due to people
with HIV. Epstein Barr virus may also cause it. I had a really bad case of
some virus 7 years ago when the city building dept. forced us to work through
the winter.
Signs - enlarged lymph nodes, spleen and liver, anemia, low platelet count,
infections, fever, weight loss, night sweats. I had all but the infections.
They forgot to mention fatigue.
Diagnopsis is by biopsy of the affected organ (my spleen), biopsy of the bone
marrow (mine was not affected fortunately), and blood tests.
Time to wobble back to bed.
I had no trouble with buttons but it was hard to thread a needle and my
handwriting has become even worse than usual (which was pretty bad).
I will hold off on the next shower until after the prednisone period.
I am trying to train Jim to sneeze in the other direction.
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dah
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response 197 of 257:
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Sep 17 22:53 UTC 2003 |
I've seen wives treat their husbands like children before, but keesan really
takes the cake (DE: away from Jim when he acts up).
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tod
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response 198 of 257:
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Sep 17 22:59 UTC 2003 |
This response has been erased.
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dah
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response 199 of 257:
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Sep 17 23:02 UTC 2003 |
Yeah, but treat dumb kids like me as dumb kids like me and grown adults like
Jim like grown adults like Jim.
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tod
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response 200 of 257:
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Sep 17 23:04 UTC 2003 |
This response has been erased.
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dah
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response 201 of 257:
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Sep 17 23:07 UTC 2003 |
k.
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klg
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response 202 of 257:
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Sep 18 01:29 UTC 2003 |
#173 of 201 by klg (klg) on Fri Sep 12 12:55:15 2003:
CHOP is four chemicals, although the Pred is taken as pills:
CHOP chemotherapy agents
C Cyclophosphamide (Cytoxan ) DNA-Altering
H Doxorubicin (Adriamycin ) or Rubex or Hydroxydaunomycin Antitumor
Antibiotic
O Vincristine (Oncovin ) Blocks Cell Duplication
P Prednisone (Deltasone ) steroidal: anti-inflammatory,
Immunosuppressant
RITUXAN - a monoclonal antibody (Mab)
Can't remember being told to stay out of the sun by anybody except the
radiation oncologist. who said to keep the skin of the target area
covered by at least a tee shirt for about a year. Never had any
problems.
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keesan
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response 203 of 257:
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Sep 18 19:15 UTC 2003 |
I was just informed that I have intermediate grade lymphoma and it is stage
IV because of abnormal lymphocytes in the fluid around the lungs. (I vaguely
remember someone coming into the room where they had left a couple of bottles
of it and asking my permission to take one for analysis). So Stage IV does
not depend upon liver enlargement.
Also that any symptoms that I have now are due not to lymphoma but to the
chemotherapy. The fatigue has hit as expected. Morning nap again. I should
phone if I run a fever. My temp this morning was 97.2. Jim has been
sneezing and my nose is stuffy but I have until Monday to fight it off (when
my resistance is at its low point). I am keeping very warm. Visits will be
planned around my blood count. If it runs only 6 treatments I am done by
Christmas.
The doorbell just rang. Flowers from someone I have done a bunch of free
translations for but had to turn down last week. (I did send them a copy of
a translation similar to what they needed done for themselve and suggested
that they change the names and dates and forward to another translator I know
who would print and notarize the result. I did not want to make a special
trip to the bank for this.) Jim will take a photo of me and the flowers and
the computer I am typing at (a 486 in the bedroom with amber monitor).
My sense of smell is working fine today. Roses, baby's breath, goldenrod,
something purple..... ferns. Jim took three shots and went off to download
(with our 60K DOS software for downloading from Epson or Olympus of which i
have a copy for Linux as well - you can carry around a boot disk with the
software and still have room for some photos on it, and bypass Windows and
the hard drive on friends' computers. Jim uses DOS 3.3 for his boot disk as
it won't recognize the hard drives on recent computers - they are too large.)
Today I ordered a 3" twin size mattress topper which we can put on the harder
futon in the bedroom so Jim can have his living room back. (I put the 2"
model on his living room futon/couch as it has some foam padding in the middle
of it already). $126 uncovered, $220 covered according to the website. I
ordered uncovered at which point the salesperson said I could have a covered
one (quilted, mostly cotton, with zipper) for $44 extra instead of $220, plus
$20 shipping, standard UPS in stock 2-3 bus days. This is the factory.
Various distributors wanted $395 for the same thing, the local store $530.
The place that quoted me $130 covered revised it to $180 (higher density).
The insurance might pay - only costs the same as 1/2 hour of recovery room.
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keesan
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response 204 of 257:
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Sep 18 19:29 UTC 2003 |
I have asked John Perry to post the new photo of me with flowers, which
includes the front of my head this time. Or you can copy it from my home
directory until I delete it: sflowers.jpg. They smell nice.
Time to slice and dry the pears from the orchard at the end of the street
(Orchard St.). Jim is first fixing the fruit dryer (which I thought worked).
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