|
Grex > Health > #89: Sindi Keesan's Lymphoma Journal Part 3 |  |
|
| Author |
Message |
| 25 new of 475 responses total. |
albaugh
|
|
response 124 of 475:
| 
Jan 23 18:07 UTC 2004 |
Where would the msconfig program normally be located in Win2K? My Win2K PC
at work says "can't find it"; I wonder if it was deliberately removed by IT
to keep people from turning off things...
|
keesan
|
|
response 125 of 475:
|
Jan 24 02:46 UTC 2004 |
We have the DVD player in Realone and a 500MHz computer. We tried to get this
working on a 233MHz computer and it was missing some drivers. We downloaded
three different drivers for that model DVD drive and found nothing that
appeared to be usable. Two of them were some hardware identification program.
How large is a DVD driver supposed to be? Samsung made lots of different
models - do they have something generic as do CD-ROM drives made since 1995?
Tonight we had a visitor - jep brought over his dead aquarium lamp and he and
Jim managed to replace the switch and then discovered that it still did not
work and needed new contacts, which had corroded away to nothing. We
attempted to fix an Epson printer that required a 40 min download for the
basic manual (on a fast modem), and tried to fix a dead cartridge or two, and
had supper and a lot of fun hearing about submarines and fishes.
This afternoon I shoveled Jim's walk and three of the neighbors' walks. It
was light fluffy snow, but I was impressed that I could manage this. Just
four months ago it was an accomplishment to walk to the corner and back.
It is still work climbing stairs.
Tomorrow we may have another last day on the town before I go into retirement
again for 10 days. The library is having a 50 cent booksale (down from $1
or more) and we will see what they have in outdated linux books.
Jim compiled a program about how to count calories in order to lose weight.
You are supposed to stop drinking orange juice and eat more bananas.
|
keesan
|
|
response 126 of 475:
|
Jan 24 21:08 UTC 2004 |
Today we went to the library book sale to get linux books. There was one
Redhat which we left there but Jim found a lab book for C++ and I found a
Norwegian-English pocket dictionary which I could not pass up. I have little
trouble getting to town but coming back it is uphill and my legs get tired
and they are sore again. I should do this more often. On the way back my
neighbor from where I usually live came out the door of her futon store so
we stopped to visit.
Futons now come not just in cotton but in cotton with foam core, all
foam, cotton over foam over cotton over innerspring, and polyester fiber over
cotton and who knows what else. They have one frame that incorporates a
tatami mat for those who don't want to put their futon on the floor (and
matching seats and bedside tables topped with bits of mat). It counts as as
futon if you can bend it. One futon was on a frame which lets you crank up
the end like a hospital bed. One was cut in two pieces (all foam inside) with
sort of a hinge - without the hinge it would be a 'mattress'. The latter are
harder to move through doorways and attic hatches.
No more social events scheduled other than Monday's chemo session and
the several hours of waiting around when I talk to other people there and
don't feel so weird for a while without much hair or voice. My voice is
actually a lot closer to normal today which means I am due for another session
very soon. It will probably be better on the day I see the ENT doctor just
over three weeks from Monday. Who cares, the insurance is paying for it since
I am going to be over $8000 again. The last CAT scan (no contrast solution)
was only about $3000 instead of $4000. They can charge what they like. It
is three times as much for abdomen-pelvis-lungs as it is for just one, but
does not take much longer to do.
|
keesan
|
|
response 127 of 475:
|
Jan 25 23:19 UTC 2004 |
Food is tasting sort of okay today. I had mustard greens, which are always
bitter, and grapefruit juice, also bitter, and neither was sour. Tomorrow
things go back to what has become 'normal'.
I usually phone my brother on his birthday, which will be Tuesday, but I won't
have a voice for a couple of weeks after tomorrow so I tried today. The
babysitter does not know when they will be back. I finally got her to take
a message.
Jim just made sure the car starts. We already used it a week ago. It needs
the exhaust system patched at its other end and some belt tightened but it
will get us 2 miles and back tomorrow. Too cold to patch things today.
The bathroom space heater died, maybe from overwork.
Jim's wcc internet connection has been dead all day. My ISP (which I was
going to drop but it is hardly worth it to save $5 month through Nov.) was
running at 0-500 bytes/sec. The file we need to download to install a small
version of Slackware 3.5 to which we can add a small compiler that will fit
on a small hard drive on a laptop computer is at two URLs to which the links
are broken. Jim wants to take DOS and linux compilers to school in his
backback, on the bike, since they have only Windows there. He could not get
his assignment from the website today or Friday. We had been planning to get
a lot done today before I go down for the week tomorrow. At least I don't
have to plan my life around a 3-week cycle again after this last one.
Jim is pleased that he got DJGPP to compile the same 1/2 page program that
gcc and Visual Basic could manage. He had to change PI to Pi or else not
define it as a constant. The output was 600K and the program that compresses
and strips it will run only under Windows and that is what the DOS compiler
is supposed to use. Odd. He is looking into linux nasm assembly language
to write smaller programs. I tried to compile openssl so that I could compile
lynx with ssl and it failed some test, meaning I might need to compile some
test program since.
It is nice all of this did not go wrong a couple of weeks ago when I was not
getting much sleep, and that none of it is important.
Jim might rob the thermostat out of the dead heater to replace the one in the
new heater that runs constantly in a 60 degree room and overheats it.
|
keesan
|
|
response 128 of 475:
|
Jan 27 04:08 UTC 2004 |
10:00 blood draw ran 1/2 late. We met a woman from Alpena who took 3 months
off her job to come here to stay with a friend who is getting a bone marrow
transplant and is too weak to care for herself. We met another woman from
Alpena there with her husband who was getting a bone marrow biopsy. She was
very nervous. They are togethre 54 years. She taught music - piano, violin,
drum, etc. Whatever they wanted she would teach herself first.
I ran into the Cuban lady who had a remissiong and is getting a new treatment
that requires spending 3 days in the hospital each time, every 3 months. I
met someone I had seen before with T-cll lymphoma who had 6 treatments and
then after 2 months a remission and this time they are doing two treatments
if ICI (3 days in hospital) and then 1 month in the hospital for bone marrow
transplant, maybe her own. I gave her my phone number if she wants company
or outside food. I saw three small bald children some with masks.
The people working in reception had hearts and cupids all over the place, even
on their heads, and were blowing bubbles at one baby.
They were crowded so at 3 pm they gave me a bedroom and brought in a CD
player. I knew the nurses from my first time in 'bedside'. One of them
ignored my suggestion to use the large vein in my right hand that worked last
time and tried one in myleft hand - failed (no blood backed up). She heated
my left hand and tried another vein (not the large one) - failed. The failed
ones hurt more. She called another nurse who heated my right hand and used
the large vein. It was okay and hurt less. By now my left hand also hurt
in two places and hurt more from teh pressure of a little pad bound on
tightly. They sped up the rituxan to just 2 hours instead of 3 (ro originally
5) and I had no problems with it, and then the rest was done by 7 pm and we
celebrated by decorated a pineapple with straws and eating it. One nurse took
a piece.
I talked the doctor out of making an appointment after the PET scan
for him to explain the results. It can be done by email. But he wants to have
an exam after the CAT scan 4 months from now. No more IVs in teh CAT scans
after this next one Feb 17. Jim will skip school to fetch and carry and hold
my hand.
The 1 benadryl is still putting me to sleep but I ought to eat
something first.
Excuse typos. I am too nervous to sleep much before this and the
chemicals may also be affecting my brain.
We celebrated my last chemotherapy by going to the coop and getting
lettuce, an avocado, chocolate, and tofu. I will go eat some salad now.
|
keesan
|
|
response 129 of 475:
|
Jan 27 13:12 UTC 2004 |
The benadryl was putting me to sleep but I stayed up until after midnight when
Jim finally went to bed and woke about 6, probably from the prednisone.
Today I seem to be making fewer typos.
They don't do more than 8 sessions because the doxorubicin (adriamycin) not
only causes laryngitis but can cause heart problems due to inflammation.
Maybe that is what the prednisone is for, since it reduces inflammation.
I need to take one in 1/2 hour. They can't taste as bad as the
benadryl/tylenol combination, which nearly makes me gag when mashed in apple
sauce.
|
keesan
|
|
response 130 of 475:
|
Jan 28 23:47 UTC 2004 |
Monday my second nurse was the one interested in pawpaws. She also walks the
2 miles to work and lives not too far from Jim, so today we hiked over to her
house to give her some ice cleats. She traded us cookies. Said her home email
had stopped working so we phoned U of M and got the mail website and figured
out her passwords (I could now use her mail, as if I don't have enough of my
own accounts). She has an AMD 5x86 75MHz and we offered her something at
least 5 times as fast with a working CD-ROM drive that is shorter. She gave
us a tour of the 1942 house she has been fixing up. Jim's is 3 years older
but very similar floor plan. She added dormers. Her mother has been staying
with her while doing chemotherapy. We invited her along to visit the guy
making pawpaw wine when she mentioned she is interested in making wine and
beer. They are both quite tall - good thing I don't have to keep up with
someone any taller than Jim when walking.
|
keesan
|
|
response 131 of 475:
|
Jan 29 14:45 UTC 2004 |
I think my inability to remember things (old or new) was caused by Monday's
drugs, not the lack of sleep due to prednisone, because even though I got to
sleep after 3 am I can think straighter today. I was having to write down
everything yesterday or it would disappear.
The winery tour is on for some time in February. I will stay busy until then
with linux. Still compiling lynx - it turns out I need to compile zlib first
in order to get the static libraries instead of the shared ones that came with
the precompiled version. Same for openssl - which took longer than lynx to
compile and was tricky. Lynx had to be pointed at the ncurses directory but
I got a static version of ncurses from a later slackware (8.0) with the right
libraries in it. You need one file from zlib to use .gz help files with lynx.
I need to ln -s /dev/hdb /dev/cdrom (or vice versa) to play CDs with linux
and to download 22M midi patches to play midi files. In DOS 2M RAM seems to
hold all the equivalent wavetable files. Real8 is said to work with links
not just with opera.
|
twenex
|
|
response 132 of 475:
|
Jan 29 15:59 UTC 2004 |
Wavetable files are not as advanced as minid files, i.e. they do not encode
as much info.
|
keesan
|
|
response 133 of 475:
|
Jan 29 16:46 UTC 2004 |
Does that mean they don't sound quite as good? They are a lot better than
FM synthesis sound, which is like a kazoo.
I compiled zlib and now lynx configure program can't find gzopen or -lz
and still won't link zlibrary. I can manage without .gz'ed help files, in
fact I can manage without help files at all if need be. What is gzopen and
why did it not come with zlib?
I am about to try getting links to play CDs again. It is much easier just
to push the play button on the drive but this is a test.
|
twenex
|
|
response 134 of 475:
|
Jan 29 16:49 UTC 2004 |
It does indeed mean they don't sound as good. I believe they encode sound as
stereo, whereas a wavetable file sounds like those little pocket piano things
you can get for kids.
|
keesan
|
|
response 135 of 475:
|
Jan 29 17:48 UTC 2004 |
I am not sure that even good midi files are worth a download of at least 4
hours for 22M, or 3 days at current connection speeds due to virus loads.
Realplayer 8 for linux won't run - gives me 'segmentation fault' - why?
It is a large .bin file. I did chmod u+x on it as instructed. Does it need
to be somewhere on the path perhaps? I am trying to run it from /tmp where
I can run other programs that are not on the path if I go there.
|
twenex
|
|
response 136 of 475:
|
Jan 29 17:56 UTC 2004 |
/tmp is probably not a good place to run programs from. a segmenmtation fault
is the equivalent of a windows GPF or "illegal operation".
|
keesan
|
|
response 137 of 475:
|
Jan 29 18:09 UTC 2004 |
What makes it illegal to run a program from /tmp?
|
gelinas
|
|
response 138 of 475:
|
Jan 29 18:11 UTC 2004 |
Not "illegal", just not a good idea, because /tmp gets cleaned out at
irregular intervals.
|
polytarp
|
|
response 139 of 475:
|
Jan 29 18:55 UTC 2004 |
But only on some systems, which even I didn't know, and that caused me to
accidentally delete /var/tmp on a work computer, and oh my gosh did I ever
hit my forehead hard.
|
gull
|
|
response 140 of 475:
|
Jan 29 19:49 UTC 2004 |
On some systems /tmp is even a ramdisk.
|
polytarp
|
|
response 141 of 475:
|
Jan 29 20:01 UTC 2004 |
Wack.
|
keesan
|
|
response 142 of 475:
|
Jan 29 20:06 UTC 2004 |
I clean out /tmp when I think it needs cleaning and I try out programs there
before moving the working ones somewhere else. I put realplayer8 in its own
directory and it still gives segmentation faults.
I need to add another \ to my lynx compilation script so it will compile
statically and then compress the output.
|
keesan
|
|
response 143 of 475:
|
Jan 30 01:22 UTC 2004 |
It told me command not found when I added \ to the first line of the script.
I am supposed to figure out what command was not found now.
Today I have numb shaky hands, I am sleepy but cannot sleep, my legs are
wobbly, etc. This gets worse until Tuesday at which point my tongue and lips
will hurt and things will taste worse again. My hair is falling out again
but not making much mess because there is little left to come out. I don't
care, it is the last time (I hope) and in two weeks I will be nearly normal
except for the laryngitis and things still tasting funny. Hot flashes might
have been a little milder for a couple days but are hotter again now. At
least I know what to expect as it is the 8th time, and my blood counts are
better than for the last couple times, and I am not coughing nor is Jim. He
is recovering from 12 hours of chasing around school by taking a very long
hot bath.
I cooked for myself. Hands not up to chopping but I made a peanut butter
sandwich, and warmed some soup, and boiled two medium eggs and used the water
for noodles and ripped up some lettuce. The noodles taste a bit odd. I put
cheese on them for disguise.
Now that we figured out how to upgrade two motherboards from 100MHz to 133MHz,
I learn that Kiwanis is throwing out 200MHz cpus. Maybe they will save us
some to make a really blazing fast computer for my nurse. The one I upgraded
to 166MHz has an F0 0F bug - what is that? At least it does not spread.
|
keesan
|
|
response 144 of 475:
|
Jan 30 11:37 UTC 2004 |
This week I am now consistently waking at 5 am or before (plus a few other
times during the very short night) after getting to sleep somewhere around
1 am. I got up and managed to break open my own capsule and mix it with
applesauce.
I am having the usual temporary shaky hands, which are a little more numb.
This will not last long. The 2-day slight incontinences is over - the poisons
must cause bladder irritation. I have pains in my upper arms, which should
be gone in a day or so, and sore leg muscles, ditto. Tongue is getting a bit
sore and that will last around a week. Eyes are runny but that gradually gets
somewhat better during the cycle.
Things that I expect to get worse - immunity and fatigue (will start to
improve around Tuesday), sense of taste, sore tongue, mouth, and lips.
Will get slowly better - laryngitis and hopefully some day the hot flashes.
This is really minor compared to what many other people go through and I am
even cheerier about it than the last 7 cycles since I expect it to be the last
time on all of this. And if not, people have survived worse.
Maybe I will have more hair by the time it gets warm enough to go out without
a hat. I may celebrate somehow around May 20 if the first checkup goes well.
Two people I talked to did not make it that far but they had different types
of lymphoma.
It will be nice to be able to bike again and spend time at my own apartment,
which I have not been able to do since July. Things are a mess there but at
least I don't have the pile of computers any more, it is here as are the hard
drives, sound cards...... Most of the food, many of my dictionaries, some
clothing. I wear the same few articles of clothing all the time so as to save
space here (and nobody sees them but me and Jim anyway). I still need to drag
myself up by the banister to climb stairs and my apartment has stairs to the
basement bathroom so it is easier here. But my piano is there.
The two people who did not 'make it' to the first checkup are not dead, one
of them did just fine with his second round of therapy and the other is not
looking forward to it (two 3-day treatments in hospital, bone marrow
transplant of her own marrow) but is feeling a lot better about it now that
I told her that the other guy has been okay for 5 years and was in bad shape
to start with. So far at least 4 of the 5 people I talked to with recurrences
had lymphoma of some sort. My mother had a recurrence (and two radiation
treatments) but hers was not treatable with chemotherapy and it was 20 years
ago. I will try to enjoy the next two weeks, hope for the best on Feb 17 PET
scan, and assume that the next CAT scan 3 months after that will go well.
The doctor expected me to come in to see him a few days after the scan so he
could explain it to me, but agreed to let me skip that appointment unless
there was something wrong after I told him I translate this sort of thing for
a living and my doctor friend was sending me copies of my scan results. I
still have to have blood draws and checkups every 3 months as well as CT
scans.
The hospital has started charging for 6 instead of 5 units of Rituxan now that
I have gained back 15 pounds, meaning an extra $1000 each infusion for just
that one drug. It would have been a lot cheaper to stay skinny. And they
charged me for 3 hours infusion of it most times but 2 hours once. It took
an extra hour to get the IV in last time - will they charge $500 extra for
that? They were busy with other patients while I just waited around in the
room. They charged for 3 kytril antinausea pills one time and I only get two,
so I might ask them to fix that and the insurance company gives a commission
on overcharges that I report.
I should get some more interesting reading matter. Yesterday I sorted out
all the pieces of paper that I keep getting from the insurance company and
the hospital - bills, receipts, etc. They are in sort of random order as they
get billed at various times after things happen depending on the category,
so that some later events went towards my deductible while earlier ones got
paid by insurance.
I paid them $8000 last time to cover both infusions and the PET scanin advance
and I hope they don't apply it to last year as it is this year's deductible.
The woman there made various notes about this, and a phone call. I cannot
phone in my debit card number, only use it in person, and only up to $1000,
so I wrote a check.
I also have a sore spot again where the spleen biopsy was - that seems to get
worse after each infusion for no reason I can think of. And sore spots in
both hands where I was jabbed, with blue blotches around two of them. The
first needle may have missed the vein and hit a nerve as no blood came out.
The nurse said no blood was coming into the needle of the second one so she
removed it - I wonder if she went all the way through as lots of blood came
out when she removed it, and lots went into my hand. The third one worked
but is also blue blotchy. None of this is terribly painful, just annoying
but I assume it will eventually all stop hurting and if not, who cares, it
is nice to be alive and feel things.
I may wake Jim (it is already 6:30) to cook breakfast, or have a peanut butter
sandwich with my last mashed 7 10 mg prednisones. This time they gave me a
special non-child-proof bottle which I can actually open myself. My hands
are still not as strong as before.
|
scott
|
|
response 145 of 475:
|
Jan 30 15:18 UTC 2004 |
Sindi, a couple of Pentium II motherboards from my old office are still
available... you turned them down a couple years ago, but perhaps they've aged
enough to be useful?
|
twenex
|
|
response 146 of 475:
|
Jan 30 15:33 UTC 2004 |
The illegality of the segmentation fault and the not-a-good-idea-ness of
putting a program in /tmp are two separate issues. A segmentgation fault means
the program is somehow broken.
|
keesan
|
|
response 147 of 475:
|
Jan 30 16:43 UTC 2004 |
I am trying to run RealPlayer8 for Linux - I doubt that they would post a
broken program. Maybe it requires a Pentium II to run? We have a Pentium
II and I will try it on that next.
What I would really like is Pentium I 200MHz cpus to put in our existing
boards. The PII need special cases and we don't have those, but I think we
have one that we could modify to fit by adding a panel so yes thanks, however
our current prospective new owner of a computer wants a small case and we are
thinking of setting her up with the PI 166MHz that you gave us a year or two
ago, which will fit UNDER her 14" monitor instead of the 25" 486 that
she has on the floor next to the desk now. It will take a 200MHz cpu if we
can find one for it. Do you have any of those? Kiwanis throws them out.
I got 2 more hours sleep this morning after my last (awful tasting) prednisone
so am up to nearly 6 hours and feel relatively great!
Jim did his homework already. He switched yesterday from a morning class
taught by someone who is not teaching the way he can understand, to an
afternoon class. The first instructor is learning to use the new MS program
and posted the assignment at the 'blackboard' website. Apparently the second
instructor makes up all the assignments and supplies them and the answers to
the other two instructors. His first instructor also posted the answers, in
fact she posted an entire directory. Jim has been having an easy time doing
the programming but the typing takes him forever and I need to fix all his
spellings. He will just change the first line in this one - he thought about
changing a few spellings too. His favorite spelling is volumn which does not
rhyme with column.
I am still trying to compile lynx with zlib. I may have an extra space in
my script for configuring it. openssl is at least under control.
Jim is microwaving apples to make them taste better so I will continue to
force fluids. Time to start gargling salt-and-soda water for a week. If I
can avoid catching the flu for one more week (by not going near anyone) I have
it made. Assuming Jim does not pick up something in class, which is not until
next Tuesday. His new class is full (24). The old one was 12 and dropping.
|
keesan
|
|
response 148 of 475:
|
Jan 31 14:19 UTC 2004 |
No more prednisone! It has been over 24 hours. Now I can spend a few days
being sleepy instead of nervous.
Today I got my first hate mail from someone at grex that I never heard of.
I forwarded it to uce (spam) before bothering to read it. Strange. I presume
the sender is rather young and does not know how to do 'forget'.
libncurses.a is only half-size. I wonder how long it will take to compile
ncurses in order to get that one file the right size. THere must be an easier
way to get the file. What is an .a file?
|