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| Author |
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| 25 new of 257 responses total. |
keesan
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response 175 of 257:
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Sep 12 23:46 UTC 2003 |
I could not find a spotted grexers item. Last week near the hospital we
spotted a recumbent bike with Scott on it and ended up at a light together.
(I passed him a fig). Today we spotted slynne because she brought over her
thermarest chair for me to try out. It needs a better-behaving mat (hers no
longer inflates) but we have lots of those. She admired Jim's luxury model,
tried the local pears, and left me a pile of interesting looking books and
videos. Our very first visit and Jim had been rehearsing how to clean p the
room and make the bed back into a couch but did not bother. It was nice to
meet slynne in person (Jim had already met her via the chimney).
I don't spot a whole lot of people otherwise. My view is of the grapevines.
Jim was out and picked a few tomatoes (pretty tiny, but that happens when you
do not weed) and reports that HIS pawpaw tree also has pawpaws. The Seckel
pears left on his tree are still hard and green. Is there any non-local news
I should know about? My world has shrunk.
Today's gourmet supper was grilled cheddar on some sort of Zingerman's 'rye'.
The scale is being creative. Sometimes I am 96 pounds, sometimes -437 pounds.
Jim says to try the other two and pick my preferred weight. Perhaps it was
not just the batteries that caused these to come to Kiwanis and get dumped.
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krj
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response 176 of 257:
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Sep 13 20:43 UTC 2003 |
((Sindi wanted me to wave hi at Grex from her lunchbox computer.
I'm over visiting Sindi and Jim.))
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keesan
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response 177 of 257:
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Sep 14 15:32 UTC 2003 |
It was a nice visit. We discussed hospitals in Aspen (where Ken said the food
was great but the stay was boring), PICC lines, feet, and various modern music
technologies and formats such as can you use Linux (maybe not on a 486) to
burn CDs. He made me three classical music CDs to listen to (not on the AIWA)
during the 4--6:30 news time and on weekends. Jim tried to fix the AIWA CD
player by putting a book under one edge but that did not help. We listened
briefly to the jazz CD that came with the cookies ('sounds just like
Kroger's'). In general a very nice visit but I had to lie down for half of
it.
I had promised Jim to go out for a walk yesterday. We made it nearly to the
corner of his rather long block and encountered another neighbor who goes out
walking every day. She had 5 strokes and says the first time she overdid it
walking and fell. Jim walked with us both in the middle so we could hold on
to him. Her problem is sidewalk bumps. Walked back to the other end of the
block where she lives and turned down invitations to look at her garden (which
some young friends in their 50's insisted on weeding for her) and to come in
and sit down (can't sit on most chairs yet) and came back and I collapsed.
We will try to do this every day and maybe make both corners some time.
I tried to change the toilet paper but the spring is stronger than I am. A
good goal for next week. I am up to 95.5 pounds on the unlighted scale while
the one with red lights suggests somewhere from 92 to 97 along with the large
negative number. I hope I am still hungry after tomorrow, which is what I
ended up thinking about instead of sleeping half the night.
They tell me I can sleep during transfusion of Retuxen (sp?) - sure, while
they are taking my blood pressure every half hour with that nasty machine
(which gives wrong results anyway). Maybe Jim can use a stethoscope on me
instead if he explains he took two years of nursing courses at WCC. I can
even take blood pressure (not my own, I don't think).
Today we need to come up with packable breakfast (to be eaten before
chemotherapy which should not be on an empty stomach) lunch and probably
supper for both of us tomorrow. There is always the refrigerator in the
patient lounge on floor 8A of another building, and microwave oven. I need
something I can eat with one arm tethered and this time I will make sure it
is my left arm tethered.
Ken said he had time to get bored in the hospital. Maybe I will have time
to get bored tomorrow. The bed will probably be sticky plastic again but no
hospital gown with snaps under my spine at least.
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keesan
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response 178 of 257:
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Sep 14 20:41 UTC 2003 |
Today we finally got the form signed for letting Jim make my medical
decisions, witnessed by the neighbors across the street when we took a short
walk (to the near corner). One of them offered to make me peach cobbler.
Her husband fixes very expensive Sony recording equipment and a few years ago
helped us fix a receiver by pointing out that a line was missing on the
schematic we were trying to fix it with (which led to our redoing a bad solder
joint that was destroying compnents).
The hike continued into the back yard, where I ate a ripe pear (they are
starting to fall) and admired the sunflowers, ornamental amaranth (which
somehow are thriving despite the weeds -big purple flower spikes), and lots
of cherry, yellow pear, and plum tomatoes plus some kale, cabbage, and all
sorts of bean species twining around in the leaves. I dont' think I will be
picking any beans off them this year. The jerusalem artichokes are slightly
shorter than the fruit trees and there is one clump of pawpaws.
I am experimenting grexing from the armchair today but it like most others
is for people with longer legs so I need to sit cross legged.
I have found the letter from my friend in Trieste about her sister having
stomach cancer. Her chemotherapy should have finished in July, and it
involved three days in a row of infusion every three weeks. Probably shorter
days than I will have tomorrow, when they are infusing four things in one
session. Her sister also had surgery, and was trying to get back up to at
least 46 or 47 kg (x 2.2 = about 100 pounds). Her sister is a few inches
shorter than I am and I think was less skinny to start with. My friend said
the symptoms started suddenly. Her sister cannot eat fats because they
removed her 'vranico' (I don't have a dictionary here) and has to eat a little
bit many times per day. I really have it easy as regards eating (except the
fuzz will be back on my tongue in a few days and I think the chemotherapy
removed my appetite). She says the first few days after therapy are the
worst. Can't be any worse than the hospital - at least I can sleep and the
food is a lot more varied. I get custom-order meals here. (Jim continues
to feed himself popcorn and my leftovers and lots of oatmeal). I should order
yellow pear tomatoes.
If you don't hear from me for a couple of days it was the chemotherapy making
me tireder again.
My friend (who is Slovene - I need a dictionary badly) will be surprised to
hear from me. We met in 1973 at a Slovene summer school, where she took pity
on me for not understanding a word and tried to help in English. Since then
we have been through the death of both our mothers (brain cancer) and her
father (old age). Seems she is always taking care of someone. I had asked
if she could meet me at the station in Trieste after the summer school and
help me find the youth hostel - I ended up their guest for a week instead.
Trieste is a lovely place to visit - it runs up the hill from the sea, with
many pedestrian-only stairways instead of streets, areas where the water
supply is outdoor fountains, a rocky beach, aquarium, museums. In the winter
you need to hold onto the railings which are conveniently attached to many
of the buildings on the steeper streets so the wind won't blow you away. My
friend is still in the apartment her parents had (there is a severe housing
shortage and you need state help to find anything) and complaining of all the
construction noise and dirt as all the surrounding apartment buildings are
being replaced with larger ones. She is not allowed to move. Her parents
raised three kids there. Kitchen, living room, 1.5 bedrooms (the .5 is more
of a storage closet but she slept there). Nobody slept in the kitchen. At
one point they took in her divorcing sister with her four kids. This building
is 3 or 4 floors of two apartments each. Downstairs is a bakery where they
start around 4 am, and you get your morning rolls.
She hopes I am having a more peaceful and pleasant time of it at the moment
than she is. She is in for a surprise. I hope her sister is doing well.
Her apartment reminds me somewhat of the one my grandfather had in Brooklyn
(rent controlled, $90/month in the early eighties) but they don't have a
central open area like the larger apartment buildings in Brooklyn so the
apartments all have clotheslines stretched out between windows in two
different rooms, on the street side, with pulleys. My grandfather would wash
his laundry in the bathtub and hang it out on some complicated clothesline
arrangement, and I think his building predated refrigerators as there was a
little compartment off the kitchen to put milk in in cold weather. Brooklyn
must have been a real step upwards for early immigrants from Italy. Jim
recalls our staying at his apt (without electricity - he was already in a
nursing home) and having breakfast in Italian pastry shops a block away while
we attended a translator's conference. The trucks passing by on the four-lane
highway in front let us see at night anyway. When I was a kid I found the
cockroaches in the bathroom interesting. He lived there since 1936 (and died
in 1985).
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dah
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response 179 of 257:
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Sep 14 21:16 UTC 2003 |
DID YOU SAY TAMPONS?!
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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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