Don Foreman wrote:

Finally some good news! Prayer warriors and senders of good vibes,
thank you!

First some background: Mary's edema has recently made collecting a
blood sample quite problematic. They tried to do it at the Allina
clinic on Wed and even the most experienced technician failed with
apologies. We went down to Mayo on Thursday afternoon, stayed
overnight at the Kahler Grand -- which ain't so grand, more on that
later. First thing on the agenda Friday morning was a blood draw for
lab work that the hemotologist needs to assess, prescribe and proceed.
Mary mentioned that they'd been unsuccessful in Minneapolis. The lab
tech just smiled as if to say "this is Mayo." And so it was. She
hit paydirt on first jab. She used several preparatory techniques
that Allina didn't seem to know about.

Lab work was done while we had lunch, bought some new compression
stockings at the Mayo store, and waited for a few hours. We then saw
Dr. Chee, the hemotologist. Hemoglobin count was good, platelet
count was good, Mg was a bit low ... and the concentration of amyloid
protiens was down from almost 300 to a single digit. YAY and OMG!
The chemo is working! That's the best news we've had for months.
Things looked good enough for Mary to have chemo again today. They
added Mg to the drip. The chemo was a quick push but Mg must drip
slowly so we didn't get outta there until after dark. I dislike
driving at night but it was easy tonight after good news. It wasn't
snowing, the road was dry and there was a full moon.

When we got to chemo, we mentioned that Mary's edema made finding a
vein quite difficult but that the techs in the lab had succeeded. The
chemo nurse grinned as if to say, "hah, that's the lab, this is
chemo. Watch this!"
We were not disappointed.

Mary is still quite weak from her several hospitalizations due to
internal bleeds (and chemo, of course) and the edema (from
transfusions) continues to be a problem and nuisance, but if her
heart and gut can hang in there for a little while with the kappa
amalyoid proteins under control by chemo, the damage to the heart
and gut will eventually begin to reverse. The disease is still
incurable (but then, so is herpes) but it may be managable enough to
allow some quality life to look forward to. **** defintely happens
but today's findings were very encouraging.

We planned her funeral on the ride home as a matter of conversation,
what she wanted to talk about. It's something couples our age should
discuss, who knows who will go first. We haven't discussed mine if I
should go first because I really don't give a ****.

I asked her if she was ready to give up and die. She said oh hell no,
far from it, just wanted me to know her preferences.

She clearly expects to die first. That purely sucks, he said
selfishly.

Dr. Chee, a very high-energy young woman, asked Mary how her energy
level was. Mar said with a grin that she could barely lift a foot six
inches from the floor but her energy level to keep trying was
undiminished. The doc actually laughed out loud, clapped and shouted
"YES!!!"

The rehab center (not Mayo, not hardly!) has an excellent rep for
rehab PT and OT which is why Mary is there. Mary is very pleased
with the rehab she's getting and the people that are providing it. As
a care facility, it definitely has some warts. Most of 'em do as you
no doubt know. First issue was, they are lockstep military rigid
about meds while Mary needs some leeway to adjust dosage of one med
according to prescribed guidlines. They weren't letting her do it.
Specifically, she needs to adjust her Lasix for gradual edema
reduction according to how much weight she loses each day with target
being 1 to 2 lb, not significantly more or less.

I can understand how they don't want residents with dementia making
decisions about their meds, but it's quite evident that Mary is far
from mentally deficient or addled. It became immediately clear that
trying to discuss this with the head nurse was a complete waste of
time. His receiver was turned off, smashed and the parts cast to
the wind. He da man in charge, shut up. Roger that, this needed
to be fixed. We discussed it with Mary's primary physician at
Allina. He was dismayed, but seemingly unable to figure out what to
do about it. So today we discussed the matter with Dr. Chee at Mayo
after she'd had a look at Mary the Michelin Woman.

I don't think I would like having Dr. Cheng Chee mad at me! She
wrote a freakin book of orders, crystal clear, precisely defining
bounds of prescribed discretion: how dosage should be adjusted on a
day-by-day basis according to specified conditions and measures,
putting the legal onus squarely back on the care facility if the CYA
buggers are driving: allow Mary to follow orders, or if you insist
on driving than you'd better follow orders flawlessly: screw this
up at your peril because we will definitely be paying attention. She
printed them out, gave us hard copies to deliver, bestow and serve
upon Herr Obersturmfuhrer nurze at Das Rehab Zentrum.

Mary has me there 3 to 5 hours a day, not to mention all day when
we're at Mayo. I think their staff could get her ready for bed as
well or better than I can, but she wants me to do it -- and she
directs like a melodious-voiced goddamned drill sergeant. She is
definitely organized. I purely hate being micromanaged but Gawd,
how I would miss that woman! I'm patient. Son Dave is sometimes
amazed at how patient I can be, though I do eventually put up some
mild-mannered resistance. "Mar, you're micromanaging." She
delivers a velvet rejoinder that gets returned like a tennis ball
that hit a smiling claymore. She says, "oh... yeah" for that round
only. We've been doing that for most of 30 years, nothing new. Life
with Mar is never boring.

The Kahler Grand: way far more amenable to our present needs than the
Microtel. Handicapped-accessible rooms, wheelchairs everywhere,
direct connection to the Mayo skyway/subway system. I can stop at the
main entrance, go in and shag a wheelchair, come out and load her up
and move her inside, then go park in the Kahler ramp. Once that's
done we won't have to mess with the car until we're ready to return to
Mnpls. There are several good restaurants at the Kahler and
elsewhere in the completely-wheelchair-accessible system.

But it has its warts. Things in the Mayo system are very clearly
posted and marked, and system maps are readily available. Within
the Kahler itself, an old hotel, ya pretty much have to recon it and
dope it out. There are many entrances to the parking ramp so you'd
better be able to recall and retrace which one is closest to your
car.

My key card that operated the door on our room would also serve as our
parking pass and would allow entry from the ramp to the hotel. That
was cool because I'd lucked into a parking spot right next to an entry
door on the 2d level. I checked no fewer than three times to verify
that the card would work after checkout, since we checked out this
morning but didn't depart until after our long day at Mayo. I
parked Mary at the access door near room 292 (I'd mentally notched
that tree on previous recon), went out confidently to get our coats
out of the car, start the car to warmitup, and return to inside to
collect Mary. The goddamned card wouldn't open the goddamned door.
ARRGGGHHHH. I tried both cards every which way from Sunday. No joy.
I decided to make a little noise just in case so I heel-stomped the
living crap out of that steel door half a dozen times and paused to
see if that might have any beneficial effect before walking two blocks
in the cold. (15 and windy) It did. Mary, knowing me well,
deduced what the racket was all about and enlisted the aid of a
passerby to open the door from inside. (It was at the top of a ramp
too steep for Mary to wheel herself up and assist from inside.)

Turned out the passersby she enlisted had a similar experience
involving climbing several flights of cold stairs, so they were
sympatico.

Loaded up in warm car, Mayo wheelchair #892 left to hopefully be
crushed by an errant Audi since we couln't open the goddamned door
with our goddamned keycard to courteously return it like good
Minnesotans, thence to exit the ramp. The guy at the desk, upon
inquiry after being told that we checked out this morning, had
assured me that the keycards would open the gate to release us from
the ramp.
It didn't. I tried that 8 ways from Sunday. No joy.

I noted what looked like an intercom with a pushbutton. I pushed the
button. I wondered if the button was really intended to push that
far, since I punched it with some vigor and was surprised at how it
yielded. No voice emerged from the plastic intercom grilll but the
gate opened forthwith. Mary said "drop the cards, go before it
changes its mind". Great minds, our trunk was past the open gate
before she finished her sentence.

Thence back to the rehab facility 90 minutes north, where I spent an
hour getting her moved back in and ready for bed. That's after
swinging thru Fridley to glom some clandestine Lasix in case Herr
Obersturmfuhrer nurze at Das Rehab Zentrum is too bloody thick to
follow orders. Winning here isn't about being right, it's about
taking care of Mary as job1. Mar has no problem with sneaky,
devious, alert cunning and sly when appropriate.

Thence home and some supper at 22:30. Phew! Mar ate in the car as
we left Roch but I don't like to eat while driving so I got by on
Caribou Coffee. You'd think a freakin' coffee shop would have more
than one kind of coffee, wooncha? Ethiopian light roast fercrissakes.
I have nothing against Ethiopians, but light roast?

Two messages on the answering machine, one at about midnight last
night and the other shortly thereafter. "This is xyz care center,
urgent that Mary McCann call ASAP." I laughed out loud. They'd
misplaced Mary and didn't know it until midnight, where the hell is
Mary? OMG, she's AWOL! I called them back and said if they'd like
to talk to Mary directly she's in bed in room 716 right down the hall.
The person that answered the phone that time was Demi, a very neat
young nurse. She laughed, said yeah, some wires got crossed and some
folks got a bit frantic the previous evening. What a laugh! Demi
knew that we'd been careful to make sure the desk knew we were
leaving, where we were going, why, and when we'd be back.

The place has excellent rehab therapy, that's why Mary is there.

Long day, but all in all a very good day. I will sleep much better
tonight than I did last night. The bed at the Kahler Grand was ...
well ... I've slept in better hammocks. But the accessibility is
good if the freakin keycards work.


Keep us informed, Don. The prayers will continue. From the way you
describe Mary, she might be the first one to beat this cancer.


Take your cutting torch the next time you stay at that so called
'hotel'. ;-)


--
You can't fix stupid. You can't even put a band-aid on it, because it's
Teflon coated.