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April 4, 2001 - If I was still married to my first husband - this
would have been my anniversary - 4/4/64 was my first wedding date - I
don't remember the second one.
Last night my younger son, fighting Leukemia,
was awake until 6AM, complaining and wincing and uncomfortable. It was
a long, long night. I didn't get much sleep - just a quick drop-off between
headboard wall bangs. His method of summoning me. I haven't had much sleep
for three days.
I called doctors at 5:30AM - after trying
pain medication (no effect) at 3AM - I tried Tylenol (2 extra strength)
and called for help. They couldn't figure it out.
Try Benedryl - 50 mg. And 20 mg Potassium
- a horse pill.
He slept for 3 1/2 hours.
He woke up at 9:15AM and he was whimpering
- crying out, making horrid faces. This is not normal behavior for a 19-year
old.
He couldn't even lay on his side to eat -
so I fixed eggs (1 egg and 1 packet egg beaters) 1 English muffin, Smart
Balance margarine, and about 2 Cups of orange juice - and sat and hand
fed him.
We managed to put clothes on him - still no
shower. Been a few days.
I put the wheelchair in the hallway - just
by the bedroom door - and he hobbled, in pain, to the seat. I can't hold
him up since he cannot stand to be touched.
I wheeled him down the hallway and over the
threshold and on down the sidewalk to the car and he managed to get in
- in pain, wincing all the way.
He asked me to drive carefully.
Who needs the gym? I am hauling a heavy wheelchair
in and out of the truck enough to equal a few pulls! And it is no easy
thing to push a 222lb young man across carpet and over rough sidewalks.
While driving for the Dunbarton (and praying
no other silly 18-wheeler truck driver manages to spill himself and his
load all over the bridge like yesterday) I was fumbling for one dollar
and four quarters for the toll - since free carpools end at 10AM.
After that, it was fumble for 4 more
quarters for the parking at Stanford - but then they had the booth closed.
Score one for me.
He had winced at every turn and at the heaves
in the bridge road. Very mush overly sensitive.
I drove straight down to the lower level to
try for parking - noon is a very bad time in that mirror-eating parking
lot.
Right in front of me - a parking space! I
pulled in - tightly on my side (I barely could squeeze out of my door)
and was able to get the wheelchair up to his door on the other side.
He crawled into the chair.
I grabbed my purse (my work was in it) and
his backpack (sodas, Pasta Anytime, novel, knitting), left the egg-crate
foam pad and the fleece blankets (two) - it was warm today whereas yesterday
the temp was 10 degrees below normal and windy.
I wheeled him up to the elevator and into
the clinic.
From there, we went to the day hospital -
where we had spent all day yesterday (he did - I worked) getting chemo
and 3 units of blood, and from where we had left at 7PM last night.
The doctors came and looked - my son being
their "special patient" - they haven't written medical papers on him yet
- but they probably will.
They sent for lab work. Electrolytes. Since
the potassium had not worked. (Low potassium causes muscle pain - eat
bannanas.)
They hemmed and hawed.
They said the pain people would be in.
My son could barely lay down, could barely
tolerate their poking and listening.
About 2 hours later - labs drawn - they had
an idea.
Progesterone withdrawal.
He has Progesterone withdrawal - and they
didn't warn me or expect it. BEcause the last time he had the drug he
was on a whole buch of other stuff and the pain was masked. Well, this
pain. He had so much else going on.
Next time we stage the drug shutdown (we did
3 pills for 7 days and stopped cold this time)
This problem should pass by Friday-Sat - horrible
muscle bone and tissue pain - can't stand being touched, can't walk, can't
lay down, can't sit up, I spoon fed him breakfast
When I said he went from wanting to be cuddled
to "don't touch me", it triggered a response - they had seen a little
girl do that - and this is what it was.
So we tried Vicodan (narcotic) - low dose
- and watched. (Of course, they had the pill, went to give it to him,
went - wait! Is he allergic....?)
Yes - to a whole lot of drugs - but this not
one of them. Go for it!
We watched him for 90 minutes. We were playing
a game. Would I get out before the 5PM rush hour on the Dunbarton bridge?
The nurses said the doctor was checking traffic
- she'd come down after it got bad enough!
Funny!
Now he is home (just now) on Vicodan and loopy
as all get out, so I can't leave him to go to work. He is also eatting
like a horse.
I will dope the bejeebers out of him tonight
and lighten it tomorrow during the day.
Now, he still had not had a shower when we
got home. (This is a bone of contention for me - he is neutropinic and
needs to stay clean. His feet hurt right now and he's too weak to stand.)
But he had made it to the bathroom (actually
walked with help from the door to the bathroom - much better!).
So---since he was seated----- made sense to
me to take advantage of the situation......
Drop all clothes.....get the towels.....I
have a tile floor.
You got it - he got bathed sitting on the
can.
I had had the foresight to put on a bathing
suit ("No, Mom - you don't have a lot of muscles adding to your waist"
- poke poke - "that's just fat!" Smirk.)
Cute! Real cute!
While I was on my knees washing his legs he
quipped, "We sure have a lot of fun together!"
I poured water over the last part that needed
washing - using, you guessed it, the urinal. Now soapy and washed - makes
a good pitcher. At least, for that part of him!
I dried everything I could reach, got him
up and into a clean bed.
He decided that he would have my new feather
pillow - his new one was hypo allergenic
He has both of them now.
And a brand new white flat sheet on top -
right out of the package.
"Gee, Mom. Going to turn this one pink too?"
Very cute. (I also had to find an older sheet
- the new one was too scratchy.)
I dried the bathroom floor - fast way to clean
the bathroom.
Grabbed all towels, dirty sheets and clothes
and started a load of washing.
I handled all mails from work. I'll deal with
annoying phone calls tomorrow.
Right now, I'm making pizza. For my son. I'm
supposed to have Medifast - except they didn't deliver it.
Which means - we are still faced with my account
and some other woman's in the south being confused.
I get her orders - and calls about her bad
check! (Which is one of the annoying calls I need to deal with tomorrow.)
Not like I haven't told them about this before
- not like they haven't ID'd the person whose account is messed up with
mine.
But they still owe me money for a mail order
gone astray (They had UPS pick up her errant order however).
Now I think my order went to her!
Because it sure isn't here!
Which means I have to call and complain, again,
and demand that they get their accounting department's act together!
Annoying!
And my son is eating pizza. And I'm hungry!
I had gobbled a small salad (he had a dinner-plate
full) at the hospital, and a Starbucks Mocha (real coffee). Now I grabbed
a decaf - and turned beet red. ("Gee, Mom. You're hot!" referring
to my body temp of course.)
Allergic reaction.
("So----stop drinking coffee, Mom!")
No sympathy.
So I had a Benedryl.
I'll drug him later.
I just know that I am sleeping tonight!
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