response 1 of 475:

Dec 24 21:26 UTC 2003

Today I had my fourth CT scan, this one to check whether there were any
changes in the size of lymph nodes or spleen masses since the last scan a
couple of months ago (where nothing was enlarged anymore except the spleen
masses).  They called yesterday to remind me it was today at 2 and not to eat
or drink for 6 hours before and to come at 1.  I said I was not planning to
eat after 6 am and would get up at 5 for breakfast.  Jim got up at 5 to cook
for me and I ate and at 6:00 realized that 2 pm minus 6 hours is 8 am, so I
ate again at 7:30 since I could not get back to sleep.  Jim forgot to eat.

This sort of set the pace for the day.  We got there an hour early to pay off
my hospital bill and discovered I should have brought the bill since they
could only charge me for hospital expenses and I still have to pay for
physicians' services, which I think I can do at the cancer center.

We were 1/2 hour early for the CT scan.  They told me to sit down and fill
out a form.  Am I wheezing?  Actually sometimes I am, with this cough.  I
refused to sit down to fill out the form because it hurts to sit.  They let
me sit in the hallway on something padded.  Then called me to drink 2 16 oz
'berry' flavored barium sulfate suspension drinks.  The first time they gave
me banana flavored, which stunk up my urine and sweat for 10 days afterwords.
Second time they gave me refrigerated 'berry', which made me shiver and was
hard to get down because it was so cold. This time they gave me a choice of
flavors and temperatures.  They also said to save 1/3 of the second 16 oz
bottle for use just before the scan.  Last time they opened another small one.
First time I was there they forgot to have me drink something (actually they
said it was not ordered) until after I got the IV for the radioactive iodine,
then I had to wait 2 hours after drinking because they were busy, with the
IV in my arm.  Ouch.

This time they waited until just before I was scheduled to put in the IV. 
I got the same woman who put it in the first time, and who redid it the time
someone else botched it, rather than the woman from last time who had trouble
and got blood all over my arm and the floor.  The IV went in right right away,
and she taped it up, and 30 sec later the technician came to fetch me to get
scanned.  First thing he said was that the doctor did not order the iodine
this time so we did not need the IV.  He offered to take it out after the scan
but I made him take it out first because it hurt and then I got to use both
arms for the scan.  It was a lot easier with both arms.  This was a new
machine that was about twice as fast as the old one, plus without the iodine
it goes three times as fast - no need to inject anything and no need to repeat
measurements with and without iodine.  He does not know if I will need an IV
next time but I am going to make sure BEFORE they put one in.

We recuperated by spending $50 on food at Jerusalem Market.  Yogurt is good
for people who have had all their intestinal flora killed off by drugs and
I got yogurt cheese as well.  Jim got pomegranates, figs, and a bunch of other
things that I will probably not want to eat because most foods are tasting
funny mow, especially fruits.  I got lettuce to put with the yogurt, because
vegetables taste okay.  My knees started to feel wobbly again.

Next Monday I get my blood drawn to make sure it is okay to have chemotherapy,
and THEN they decide whether I need chemotherapy again (and if not, there was
no need to get my blood drawn but that does not hurt much).  

Today I made the mistake of wearing clothing with metal in it:
a vest with a metal zipper pull that I had to take off, a hooded sweatshirt
with a metal eyelet for the cord, which I had to take off, and sweatpants with
a metal eyelet, which they let me keep on but pull down to my hips where I
was not getting scanned.  I will check more carefully next time.  I would hate
to have to switch to a summer-weight hospital gown in this weather.  

The nurse who put in the IV told me to drink lots of fluids to wash out the
dye, which they did not give me.  I wonder if I need to drink to dilute the
barium sulfate as well.  Nobody mentioned that.  I will drink just in case.
Last time nobody mentioned anything about drinking.  This nurse is competent.
She is also the one who kept phoning Jim to come get me the first time, when
he had accidentally unplugged the phone.  She remembered us both.  

response 3 of 475:

Dec 24 22:23 UTC 2003

I think Cindy should follow the example of Valerie Mates, who moved her
on-line diary to a private place without facilities for rude people (tod) to
post.

response 5 of 475:

Dec 24 23:15 UTC 2003

For someone who reads all my posts you have a funny way of spelling my name
;)  I don't get the correlation between metal eyelets and umbrellas.  I did
not realize my sweatclothing had eyelets since I never use the cords.  The
zipper on my vest is plastic but the pull is metal.  

response 7 of 475:

Dec 25 02:03 UTC 2003

(now linked to the Health conference)

response 9 of 475:

Dec 25 14:41 UTC 2003

The new machine was definitely faster.  According to the technician, I only
had to breathe in and hold my breath for 12 instead of 17 seconds.  On the
old machine I thought I might not be able to make it.  And the platform where
you lie down is now motorized, which means they lower it for you to get on
instead of asking you to climb up with a stepstool, using the arm without the
IV in it.  
        The technician also said sometimes they don't use the contrast dye
(which is administered via IV) for followup exams, just original diagnoses.
But I had it for the last exam which was not a diagnosis.  He also suggested
that sometimes they use it every other time.  In either event, this is either
8 or 19 fewer IVs over the next 10 years, and I cannot imagine anything nicer
having happened to me yesterday.  The IVs for CT scans might be larger needles
than the ones for infusions, since they hurt more and are harder to put in.
They come with a syringe attached (containing saline solution?).  
        Today I woke up sneezing but not coughing at 6:30 instead of 5:00 and
my hands are hardly numb at all now.  Food tasted slightly better yesterday.
I get to enjoy the next 4 days (it would have been 6 but I got 2 days behind
schedule) until this starts all over again.  With luck, the cold will be gone
(it has been 4 weeks now) before my immune system is knocked out again, so
it won't come back in a week like it did last cycle.  
        The berry stuff tasted a bit odd but much better than orange juice is
currently tasting and I managed a whole 32 oz of it since it was not cold.
The plastic mug that I brought to drink it with now smells funny despite
repeated washings.  I wish that they had an unflavored version.  
        Today if I stop sneezing we might attempt to walk all the way to Main
St. (1 mile) and find some place warm to rest, maybe a Chinese restaurant,
before hiking back.  Jim offered to make banana fritters for breakfast first.

response 11 of 475:

Dec 27 02:38 UTC 2003

Today Jim dragged me out for another walk, even though my legs are sore.
Today's destinations were the hardware store and the dollar store to look at
toilet bowl cleaner.  You can get it with hydrochloric acid (acts instantly,
or dilute it if you want it to act more slowly) or sulfamic acid (whatever
that is).  Phosphates are now a no-no so the traditional phosphoric acid is
not used for removing 'lime deposits'.  Jim has to take the toilet up to get
out all the deposits in the lower part, starting with a chisel or screwdriver
on the thicker ones, but he needs to replace the gasket anyway.  I got tired
by the time we reached the second store and sat on my folded up coat while
he admired hose clamps.  We also got some pickled peppers (acetic acid, which
would also work on lime buildups but even more slowly).  

I am still coughing and washing a lot of handkerchiefs but my taste buds are
nearly normal and my hands hardly numb at all today.  I have three more days
to enjoy this.

We are putting Linux on Jim's other computer so that I can use the first one.
If you have a video chip that uses SVGA instead of an accelerated driver, and
it is a fairly new one, what are the chances it will display more than 256
colors?  SiS and Trio3D.  

response 13 of 475:

Dec 27 16:02 UTC 2003

Most of the SiS cards on the list said not to run clock probe but this one
did not say that.  They are all SVGA not accel. Thanks, we will try running
xf86config today.  This is our newest computer, circa 1999.  I put linux on
Jim's Win98 computer so that I could use the other linux computer while he
learned to program in C/C++ with gcc/g++.  It also has the CD/RW drive and
someone in the linux mail group just steered me to a site with THREE DOS Cd
burner programs listed.  DOSCDROAST is available command line only, or in a
much larger version (4.5MB) with mouse/gui support and it will copy music
and data files, with or without a second CD reader, and play audio CDs and
copy DVDs, and it is 0.85MB download without the gui.  CD Recording Utilities
is shareware and is 1.2M download for DOS and does not do anything audio, just
copies data from reader to writer, or via hard disk, and will finalize a CD.
(I thought only music CDs needed to be finalized and it does not do those.)

The linux group member suggested the DOS version (ported to DOS) of cdrtools.
This is 1.4M.  I tend to start with the smallest download, which would be
CDROAST in this case.  cdrtools might be gui.  DOSCDROAST (non-gui) is 0.85MB.

You need aspi.sys in config.sys to use the writer.  

I woke up again in the middle of the night coughing but in the morning am just
blowing my nose.  Today I have a cold sore starting (herpes simplex) on my
lip.  I have not had those for years.  I hope it is gone in less than a week
before my resistance is gone - anyone remember how long they last?  This cough
has been two days short of four weeks now.  


I can feel but not see my eyebrows.  I look like Mona Lisa.

response 15 of 475:

Dec 28 15:05 UTC 2003

Last night I did NOT wake up in the middle of the night coughing, and I am
not coughing this morning.  I am sneezing a lot instead and have a sore throat
but this is at least a change.  Tomorrow they knock out my immune system
again.  I wonder what the cold sore will do when my neutrophil and lymphocyte
counts go down by Friday.  

Where does hair grow back that it used not to grow?  I read a book once about
someone whose profession it was to create head models from skulls, and he did
King Midas (they found his burial site in Lydia).  Midas supposed had pointy
ears with hair on them, which is a rare genetic disorder.

The SVGA driver with our SiS onboard video chip did only 8-bit color.  So did
the S3V driver with our S3 Virge card.  The S3 Trio64V+ card with S3 driver
for X did 'no screen' and would not display anything, so we put back the SiS
with 8-bit color (and only 1280 max resolution tho the card does 16 and had
8M onboard RAM).  Then someone suggested since it is VESA 2.0 it can be used
with the xxfb frame buffer driver.  What is a frame buffer?  This should give
us more colors.  

Jim now wants me to put linux on a third computer for him.  First I want to
finish compiling lynx and antiword and put linux on a first computer for me.
Before tomorrow if possible.

Maybe the chemotherapy will stop the herpes in the cold sore from multiplying,
or perhaps it only acts on real cells.

response 17 of 475:

Dec 28 17:48 UTC 2003

Using the fraembuffer just relies more on the video chip's memory. The frame
buffer is used to store the images of screens. That's why, on some graphics
cards, (like mine), the first thing you see when loading up X, when the
graphics (as opposed to text) mode has been initialized but before X comes
up, you see an image full of dots, or full of the last screen image before
the graphicsw screen was turned off, if you reboot.

(Note: by "dots" I don't mean "snow", like you apparently get when you use
Linux with CGA cards, but a pretty, random, pattern.)

response 19 of 475:

Dec 28 19:12 UTC 2003

Re: aspi.sys: put the line:

DEVICE=ASPI.SYS

into config.sys (not autoexec.bat)

DEVICE must be in uppercase, i believe.

My Dad had chemotherapy when he had cnacer. His hair fell out; the hair that
came back was mostly grey, but he never grew hair back in places he'd already
gone bald.

response 21 of 475:

Dec 29 03:05 UTC 2003

I have not coughed since yesterday, the cold sore has already started to ooze
a bit, and I expect to be done with the last but one chemotherapy tomorrow
by 9:15 pm (or 5 pm if they don't run as late as usual).  Last time we were
at the hospital, Dec. 24, they did not charge a parking fee even before 9:15
pm.  I just realized I did not get a headache this cycle, and my ribs have
not been hurting.  My left hand stopped hurting intermittently only yesterday
so it must be high time to jab it again.

Tomorrow they tell me if the chemotherapy has accomplished anything visible
since two months ago.  If yes, I continue therapy, unless maybe there is no
longer any sign of lymphoma in my spleen.  If no, they have to decide what
to do next.  I will try not the think about it for the next nine hours.  
Tune in tomorrow evening.  

response 23 of 475:

Dec 29 06:01 UTC 2003

I thought all doctor's appointments always ran at least two hours late, at
least that was our experience with two private doctors and afternoon
appointments.  At the U of M, when I had an 8 am appointment it was never more
than 1/2 late, same for 9 am infusion.  By 1 pm they are running 3-4 hours
late.  Understaffed and too many patients for the number of chairs.  They
started a few people on chairs from the waiting room instead of recliners.

The blood draws are relatively painless but the IVs are larger needles.