response 65 of 480:

Oct 7 15:03 UTC 2003

But I don't need to go around with some foreign matter in my arm, and wrap
it up with saran wrap and tape to shower, and I can use the tub instead.

Yesterday they agreed to give me just one Benadryl instead of two (but two
Tylenol) before the Retuxan (I had no side effects and my pulse sitting is
now 72 or 80), and I stayed wakeful in the recliner chair (which was as usual
too big for me so I sat cross-legged).  Benadryl in applesauce tastes so bad
I almost gagged on it.  The three antinausea pills before CHOP were tasteless.
They infused Ativan (sp?) to protect me from the next three anticancer drugs.
That acts like prednisone - 5 lb fluid retention and keeps you awake.  At 10
pm the Benadryl won out (I felt asleep on my feet) assisted by the 5 hours
sleep the night before.  For the next four days prednisone (with Prilosec an
hour before to protect the stomach lining) will keep me from sleeping and
cause slight constipation, followed at discontinuation by rebound symptoms
after which oral thrush for three days while my immune system recovers.

They say the first week is when people are most tired, and the tiredness is
cumulative.  So far I am okay.  Got to clean up my apartment for a guest.
Jim is off to purchase four days' worth of prednisone.  They won't give us
a larger prescription because some people take them too long by mistake.  The
first pharmacy did not have them, Village Pharmacy did - not on the list that
the insurance pays for at $10/month supply but they are only $8.

While waiting from the 1:00 blood draw until they found me a space at 5:00
pm, after the doctor's appointment (he said I am doing amazingly well) and
talking to the pharmacist (who thinks the laryngitis will clear up next year),
we met a man who JIm asked if he heats with wood (he does) from Grass Lake.
He has multiple myeloma and has been coming for treatment and sometimes
hospitalzation for 4 years and gets infused every other day.  This was the
wrong day - he was waiting for nothing.  There is an occasional week off. 
He says he lost 75 pounds and was in a wheel chair for a while and still
cannot crouch but they are trying a new drug and he is hopeful.  

We got out after 9:00 pm and the cashier at the parking structure was no
longer taking the $2 fees so I bought bread with it instead.

Got to get off by 11 for jor.

response 67 of 480:

Oct 7 16:10 UTC 2003

Perhaps a better questions is, "Benadryl comes in liquid form, doesn't 
it?"

response 69 of 480:

Oct 7 19:24 UTC 2003

They thought about giving me liquid benadryl but had already checked out the
pill and besides I needed two (solid) tylenol so Jim just mashed them all up
together.  I choke when I swallow even plain liquids - something probably
related to the pharyngitis/laryngitis.  The pills would stick and choke me
too.  Heating the liquid a bit seems to help but I just choked a bit on warm
tea I was using to get down the Prilosec that I need to take an hour before
the prednisone which I need to take with FOOD (says the bottle).

Jor stopped by, dialed mnet to check his email, talked to us over a brunch
of more oatmeal than he normally eats at one time, and went off to get a cell
phone so people can find him until he gets settled again.  We went off walking
to Village Pharmacy about 3/4 mile each way with a short rest at Vet's Park.
At the pharmacy I talked to someone purchasing Neuopgen for his neutrophils.
He has had AIDS symptoms since 1982, treated with various regimes since 1989.
I hope I last that long.  Someone in the chorus that I can't sing in this year
said her mother was treated 18 years for lymphoma and found it helped to go
on increasingly longer walks and also do weight training.

Kiwanis Club sent flowers.

Near the pharmacy is Value Village.  They have $5 printers, a $4 scanner, and
a $8 6-CD Pioneer CD player.  My 1-CD Pioneer used was $80 in 1991.  Perhaps
we don't need to fix CD players any more.  Also found a stainless steel
pressure cooker like our two aluminum ones in which the lid has the gasket
on top and is pushed up instead of turning.  It should be easier to use and
not wear out as fast but I doubt we can find replacement parts.  

Also found half an apple tree at the top of the Vet's Park hill - the trunk
is over a fence.  Nice tasting.  Three blah red delicious at the movie
theater, with pink flesh.  The sour green apple tree near Jim's house still
has most of its apples.

I am supposed to drink 12 glasses of water a day but I think oatmeal and
apples and lentil stew will count towards that and besides I am smaller than
their average patient who is probably 200 pounds.  Have to flush out the
chemotherapy drugs and whatever cells they killed.  Three down plus 2 cups
of oatmeal.  Lemon-grass tea seems to make me choke.

Jim is taking aphoto of me dressed for winter with the new flowers.  The
batteris seem to be dead.

response 71 of 480:

Oct 7 22:09 UTC 2003

Two cups oatmeal, one cup lentil stew, one cup tomatoes, two cups milk, two
cups tea.  The 12 glasses was at some website and may be appropriate for
someone who lives on meat sandwiches (not much liquid in them) and weighs
twice what I do.  I am going to the bathroom pretty frequently already.
Water comes in foods, not just cups.

We had a nice late lunch with jor, who is willing to learn to install Win98
so he can show Jim how, and also to help weed the yard while he can see to
do so.  They are out right now trying to fix the starting problem on his car
then we will show him my apartment.

response 73 of 480:

Oct 8 19:36 UTC 2003

We are eating mostly organic fruits and vegetables, if that is what you mean.

Yesterday before taking jor (john) to see my apartment we fed him breakfast
and lunch and Jim 'fixed' his car until 7:30 pm (cleaned spark plugs and added
some fluids) at which point I started feeling the effects of all the drugs
so let them go without me.  They came back at 8:00 - my help is needed to
uncover the bed and kitchen.  John is staying in Jim's small spare bedroom
instead on a futon that Mary Remmers gave us.  He spent the morning automating
the m-net idle-out program and now they are trying to install Win98 on a
curbside find 500MHz pentium on which Jim managed to kill Redhat 9 (which was
too slow anyway).  We will take him to outpatient surgery Friday and if he
feels well enough afterwards, bring him back here to save the cost of an
uninsured hospital room for the night.  (same cost as three months in Jim's
small room used to be last time he had a paying roommate).  He is a perfect
guest and even likes Jim's cooking (including the Indian hot pickled lime).
By Saturday I should be feeling enough better to help more.

The chemotherapy drugs are, I think, what is giving me hot spells.  The
prednisone that I took at 4:00 pm (one hour after taking Prilosec) wore off
about 10 pm so I started losing the retained fluid and had to go to the
bathroom every half hour until 2:30 am.  We walked to the pharmacy after a
very late breakfast, about 3/4 mile each way, and got back to discover that
instead of 8 pills (2x50 mg per day) they somehow multiplied to get 16 pills
but charged for 8 so next month's supply is here in advance.  Today I woke
at 7:30 and took the pills by 9:30 and then napped.  The jitters hit again
around 2:00 so we went for a jittery walk.  The man-eating ladybugs are out.
We found another wind-up clock where the first one was, and a lot of old Win31
and even Win20 disks and a snow shovel (just in time).  I had to choose my
streets carefully to avoid the sun (which can cause a reaction due to one of
the drugs).  Jim also found a bunk-bed frame but left it there.

Anyone know why there were a lot of very slow bees crawling all over the front
steps at Zion church Sunday afternoon?

Jim wonders where to buy cheap recordable CDs so the neighbor can download
and copy him some software for use with Win98 (picture editing).  Would K-mart
have cheap ones?  Something within easy biking distance please.

I am eating rather tasteless but wet and fibrous and potassium-containing
yellow watermelon from a friend's organic farm.  Jim got all the cracked ones.

Prednisone tastes only half as bad as Benadryl.

response 75 of 480:

Oct 8 23:33 UTC 2003

        re 72:  getting flowers

response 77 of 480:

Oct 9 12:15 UTC 2003

What is Zantac for?

I have emailed the cancer center nurse to ask if I can take half as much
prednisone.  I got to sleep after 1:30 and woke before 3:30 am last night.

Scott, thanks for the offer of the CD but I don't want to take the faintest
chance of catching your flu before at least January.  

Is Comp-USA within a couple miles of Jims house near Zion Lutheran Church?

We will see if another friend can drop off a CD today.

I will probably have to start again tomorrow with the thrush treatment.  Maybe
some people consider the fruit/banana taste delicious due to the 33% sucrose?
Someone else suggested that maybe just a salt water gargle would work instead.

response 79 of 480:

Oct 9 16:02 UTC 2003

Jim is not going to bike to Best Buy area.  AA-Saline road is one of the worst
roads to bike on - full of cars and trucks, shoulder is thick gravel.  We will
get a CD-R from a friend, no hurry.   

Jor is looking for linux scanner software for Jim's latest scanner.  I have
a pointer to the correct linux software for my BW scanner (HP).

I slept from 9:30 to 11:30 (part of it, anyway).   Jim is pushing watermelons.

I have to wait until after the prednisone period ends (through Friday) before
doing the salt water gargle.  Last cycle the thrush started on Friday
(overlap).  Maybe I can just rinse all the salt out?

Tomorrow is a Zion rummage sale to walk to.  Wonder where to go today while
avoiding that nasty sun.  We are planning to get jor to surgery around 10:30
and pick him up late afternoon once he wakes up.  Maybe he would like to
listen to Jim's books on tape for a few days.  Jim made a big pot of oatmeal
this morning but finished it after jor went off on errands (finished cooking
it, and finished eating all but my small bowlful!).  

response 81 of 480:

Oct 9 19:31 UTC 2003

But what did they want from the church steps?

Today we set off on foot for the library but I was so tired we just did a loop
through the 70's chicken-coop-style neighborhood, where people have planted
a lot of interesting things.  I am going back to sleep again now.  Prednisone
also causes muscle weakness in addition to lack of sleep.  I will do library
next Tuesday when my immune system comes back.  I might sleep until then
starting Saturday when the prednisone wears off.

Jim put the living room back together as a living room now that I am in a
bedroom.  Still waiting for the 3' wide 3" thick mattress topper.  They think
they mailed it a week ago and UPS takes 2-3 business days to deliver.

We met a new neighbor who was out working in her front garden and Jim tried
to convince her that it was the easiest thing in the world to add a basement
toilet.  The houses on this block are mostly built the same way.  You just
need to bash a hole in the basement floor in the right place and cut a hole
in the cast iron drain, he says.  A day's work, maybe two.....  She has
planted four small burning bushes.  The one next door is about 8' in diameter,
or maybe 10'.  Lots of new fall color - maples, dogwoods, sumac, berries. 
Jim's 12' tall jerusalem artichokes that came into the front yard along with
compost for the last housemate's cabbages are covered with yellow flowers.
They are bigger than some of the trees.

response 83 of 480:

Oct 10 00:08 UTC 2003

Zantac?  Heartburn, right?

response 85 of 480:

Oct 10 03:23 UTC 2003

I asked the price of the Nexium purple pill - $7 each!
The Prilosec is supposed to keep the prednisone from making my stomach lining
bleed.  Only one more of each to go this cycle before I can sleep again.

Today things are starting to taste funny including water which probably means
the thrush will be here tomorrow. I gargled salt water.

Are there cheaper cell phone services than 15 cents/min evenings?

response 87 of 480:

Oct 10 10:32 UTC 2003

Thanks, I will tell jor.  He got something in a hurry so people could find
him while he was in transition.  Regular phone service is still cheaper unless
you make lots of long distance calls and few local ones.  (I pay 5 cents/min
to call Hawaii but 15 cents for Michigan.)

Today I managed to sleep between 12:30 and 5:30.  It gets light about 7:40.

I checked my first cycle blood values and today is when they will probably
drop in half and then keep dropping, but half of my last value is still low
normal.  Normal is 1.4-7.5 k/mm3 and I was 4.2 on Monday.  I expect to be up
to about 5.4 next Thursday based on past history so Tuesday might be low
normal again.  This is sort of interesting, more so on 5 than 2 hours sleep.

The prednisone also induces hunger.  I expect to be sleepy and not very hungry
when I stop taking it Saturday.

The 4.2 blood value is neutrophils (which fight off bacteria).  My platelet
count is high normal (stops bleeding) so I can still floss my teeth.

response 89 of 480:

Oct 10 19:52 UTC 2003

He  could be a "home technician".