Third and hopefully final part of a daily description of how I am being
treated for 'diffuse large B-cell lymphoma', a cancer of the immune system
which was diagnose in July-August.  I probably have two more chemotherapy
treatments, having done six already.  Also discussions of life as a cancer
patients  and lots of drift about how I am amusing myself while waiting until
I feel well enough to go near other people and work again.

475 responses total.

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.  

This response has been erased.

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.

This response has been erased.

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.  

I seem to recall a while back you used to sign as C. Keesan, unless that
wasn't you.

(now linked to the Health conference)

C. is short for Sindi.  That was me.

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.

Today we broke the one mile barrier!  It was downhill to Main St.  This is
the day of the year with the least cars out so we walked on Liberty and looked
at all the mid 19th century houses there and at what was on their porches.
Lots of swings, fewer chairs and tables, and a few benches, and bicycles,
hoses, etc.  About 10 sleds on the slope behind Slauson school.  We wandered
around a bit and had a quart of soup at Dinersty and hiked back uphill.  There
were a few other people wandering around downtown and one other open Chinese
restaurant on Main St.  Now I know I can make it to the main library.  My
world has enlarged again.  
        Tangerines taste tolerable again, as does bread.  Not for long.
I am still coughing.

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.  

very good, depending on (a) how you define "fairly recent"; and (b) how well
the particular video card is supported by XFree86; SiS cards seem to be a
particularly large minefield

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.

One good thing about losing your hair:  It's exciting when it starts 
to grow back - even in places it hadn't been before the chemo began.

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.

  re #15:  "Midas has ass's ears.."

  (there's actually a folk tale about Midas' misshapen ears..)

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.)

When loading X we see a grey dot pattern.  I tried the fbdev driver and was
told I don't have /dev/fb0.  I give up, this is beyond me for a while.  Jim
will edit photos in 8-bit color on this computer.  

How do you put aspi.sys properly into config.sys or autoexec.bat to use a DOS
CD burner program?  

The person making models of heads from skulls said he got the idea of the
hairy ears for Midas by noticing someone in the lab had hairy ears. It is a
rare condition.  

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.

My mother's grey hairs came back brown, odd.
When loading oakcdrom.sys you need to add a switch d:/oemcd001 or the like
- does aspisys need this?  Only one of the two drives can write.  But we only
had to do oakcdrom for one drive and it found two, unit 1 and unit 2.
I will try out what we have after I package a couple of things for linux. 
I just tried out ltools for DOS that lets you do things on the linux drive.
The 2M download was that huge because it was full of guis and other things
for Windows/Java/browser use, files for UNIX, and source code.  I got the DOS
part down to 75K zipped and it works.  This will be handy on a combination
DOS/Linux computer in case I download with linux and want to use thefile with
DOS.

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.  

(It is interesting to read about your experiences with chronically late 
appointments and problems with venopuncture at a government hospital.  
In the private sector, the experience was that appointments were kept 
within 1/2 hour of the set time and venopuncture was essentially 
painless.)

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.

Doctors "overbook," just like airlines.  Their time is valuable and they
know at least some people are likely to not show up, but if everyone
does they run late.  The earlier in the morning you schedule the less
likely you are to have to wait.

That is strange.  The Infusion Center to which we went was emptying out 
by 1 or 2 p.m.  Lots of open stations.  And a 4:15 doctor's appointment 
was generally not more than 15 minutes delayed.

re 16:          I thought the ears where some accident with
the early attempts at a mechanical rice picker.

This response has been erased.

Every time I had infusion scheduled for 1 pm they were running several hours
late.  At one point 9 of us were waiting for late appointments.  They put me
on every time at 4 pm because I need 5 hours and they close at 9.  Other
people have to wait even longer.  The put two of us with long infusions into
a room normally only used by very ill people because it was free.

Today I had my blood drawn at 10:00, and got weighed and vital signs taken.
Respiration 20, pulse way down to 60.  In the hospital it was 120 and on prior
visits 70-90 or so.  I might have helped that I was half asleep because I was
awake until after 2 worrying and the garbage trucks attack Jim's street first.

The nurse asked about my cold, noticed my cold sore, and said my lymphocyte
and neutrophil counts were down and that was either caused by the cold or was
the cause of the cold lasting so long and had something to do with my bone
marrow wearing out from treatment.   So they decided to postpone the next
chemotherapy a week.  Jim was predicting I would not be treated today but for
the wrong reasons.

The doctor came to tell me that the CT scan was excellent, with no more fluid
around my lungs.  I had guessed this because I had no rib pain and I was
breathing normally.  My spleen had also stopped hurting and he said the masses
there had shrunk even smaller but not disappeared.  After the eighth treatment
they will do a CT/PET scan, which involves injecting radioactive glucose,
which is concentrated in highly active dividing tumor cells.  This will be
3 weeks after the final treatment, not two as before.  And then I wait 3
months for my next CT scan to make sure things are still okay.

While waiting I talked to someone in for his biannual checkup who had had
Hodgkin's lymphoma.  Six months chemotherapy during which he was nauseous a
lot.  He said the steroids made him hungry so he gained a lot of weight, after
losing 36 pounds in 6 weeks before he was hospitalized and treated.  At his
3 month checkup they found he was no longer in remission and gave him 6 more
months of some 'more aggressive' drugs (harder on the tumor cells and on
general health).  He could not go back to work as a research geologist for
3 months after all his treatments, which included radiation and stem cell
transplant, because the drugs kept him from thinking straight even enough to
read a magazine.  I am a lot luckier, but he is fine now for five years.

The doctor said to remember there is a light at the end of the tunnel and in
my case it is a large one.  Large light or large tunnel?  

Anyway, I get a whole week that I can sleep without steroids, and maybe my
taste will become more normal.  We celebrated by eating in the cafeteria for
$6 - one cheese pizza (made with hot sauce so Jim ate it) and three vegetables
with roll (they let us take a brown one from the salad bar).  I am supposed
to drink a lot the whole cycle.  My ALT and AST counts were very high normal,
which I think means I have a lot of dead cells being cleaned away.  It can
take three weeks or more to clean up after each chemotherapy which is why they
are waiting 3 weeks for the PET scan.

I went to the bank and cashed a savings bond (since I won't be paying income
taxes this year and there is interest on the bond) that I will use to pay for
the insurance deductible for 2 infusions and a PET scan in Jan-Feb.  The
insurance pays for the next three CT scans after that.  

I napped two hours and can think straighter again.  The nurse said my hand
will probably stop hurting after they stopping sticking needles in it, but
the numb area over the spleen might stay numb due to the biopsy.  I don't know
if it is the biopsy itself or the anesthetic that causes.  It is not a problem
- I did not even notice it until now.  

Jim recuperated by falling asleep in the tub.  We unpacked the applesauce and
mortar and pestle kit which we will use next time to mash up benadryls and
tylenols, and the tapes and CDs and books.  

Re 15,16,26,27:
    Is this the everything-he-touched-turned-to-gold guy?

drew is a SEX CRIMINAL!

Type:  PEDERAST

Yes, according to mythology.  He probably just lived some place with good
mines.

Someone who is helping me with software says PET scans involve antimatter.

If there is anto-matter involved , it is because the dilithium crystals are
out of sync.

This response has been erased.

It is not a 'kit' - it is Jim's mortar and pestle, made of glass.  I have also
seen ceramic ones.  Try an Indian food store?  The 'kit' is a tupperware
container containing the mortar and pestle and some apple sauce.  The sauce
is made from Rane's windfall apples and it is pink.

I think my cold sore is healing already.  Maybe they should have given me only
four days reprieve, but I will make sure to enjoy the whole week.  Still
coughing.

The radioactive glucose is made radioactive by attaching radioactive fluorine
to it, which emits positrons.  It can also be used to study brain active. 
Fluoride allergy is unrelated to this.

Jim's neighbor brought over some clementines as a gift.  Same neighbor that
gave us 12 packages of cheese.  Jim does odd (literally) repairs for her.

        Like every other repiar, on the odd beat?  Repair #13, then repair
#15?;)

No, things like making her plumbing continue to work, finding child gates for
her dogs.  The next odd job here is to make a gasket for the nonstandard
toilet that is 10" instead of 12" from the wall so cannot easily be replaced
and is leaking into a bucket instead.  Or do some fancy cutting of cast iron
drain pipes and tiles and rebuild the plumbing system to take a standard
toilet that does not need water dams to cut down the water usage from 5 gal.
The old toilet matches the 1930s sink and tub in Jim's original bathroom.

I am up coughing again.  The coughing does not start until I lie down.
I am reading a very large book from the Dallas Art Museum deriving from their
exhibit of American tableware of this century, which analyzes dining trends
such as casserole dishes, barbecue, TV dinners, and other special events that
required special dishes.  Melamine dishes were a big hit in the fifties and
sixties.  My mother had two sets - parve and meat.  Brown and pink.  We never
did casseroles or fondue or cocktail parties or barbecues - did you?
The brown and white dishes matched the linoleum floor tiles, which she would
repair with scotch tape.  Some people are more into duct tape or electrician's
tape - does it reveal anything about their personalities?

I will try again to read myself to sleep.

(She never served dairy?)

- Backtalk version 1.3.30 - Copyright 1996-2006, Jan Wolter and Steve Weiss