OT Mary update

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. Shit 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 shit.
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.
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload
On Sat, 19 Feb 2011 03:17:42 -0600, Don Foreman

.....
Don, thanks for the update. Our thoughts and prayers continue to be with Mary and you. Give your honey a kiss for me.
P.S. You'd best hunker down for a good old fashioned MN snowstorm tomorrow
Karl
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

I don't know you from a bar of soap Don but I've been wondering how you two are getting on.
It's great to hear positive news!
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload
Dennis, my best wishes to you and Mary. I do not recall if you mentioned what her actual diagnosis is. Looks like she is getting good care.
i
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload
"Ignoramus9508"
message

".... and remember, I'm pulling for ya, we're all in this together". Red Green, keep your stick on the ice.....
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload
Not sure why I said Dennis, must be autocompletion ran amok
Sorry DON

Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

I had a big HUH? moment with that one. I read some things I type wondering who the hell did that after seeing it posted. Often too much enthusiasm and knowing what I intended to say which makes proofing difficult at best. As a coder, I'm sure you understand that.
Wes -- "Additionally as a security officer, I carry a gun to protect government officials but my life isn't worth protecting at home in their eyes." Dick Anthony Heller
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload
wrote:

Had me scratching my head to Ig!
Thankfully we are all well. ;)
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

As a longtime reader and 99% lurker, what he said!
You talked about Mary's edema and need for compression hose; three years ago I had to wear compression socks for a year due to edema from my blood pressure medication and I just wanted to pass on that the best place I found to buy them is at www.ameswalker.com. Great service, great prices, and lots of good info on their site about sizes and how to put them on. I wore there 120-xl knee-high (over the calf, as they say :-)) in white, and they were very durable and comfortable (they are a cotton and synthetic blend). I also tried the 111's, all cotton, and while they were a little more comfortable they stretched out so they were noticeable loose after just six months while the 120's were still snug after over a year. Not quite as cheap as zenni optical, but the best I could find :-). Best way I found to put them on was to roll them up and then unroll them onto my foot and leg. Then use a latex or nitrile rubber glove for traction to drag them the rest of the way into position. You don't actually need to put the glove on, just wad it up like a kleenex and wipe the sock upwards without damage. If you try to pinch the sock with your fingers and pull you are almost certain to cause local damage to the elastic.
Well, best of luck, and back to lurking.
----- Regards, Carl Ijames
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload
Don Foreman wrote:

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.
  Click to see the full signature.
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

Good. I'll say a prayer for her if it's PC with you.
I heard a cute story the other day.
Helen calls the hospital and asks how Helen is doing in room 713.
Nurse shuffles papers, and says, Helen is doing fine. Her blood pressure is stable. Her labs came back good. She's eating and resting well.
By the way, who is this?
Helen says, This is Helen in room 713, and I just wanted to call and ask how I'm doing. They won't tell me shit in here.
Best to you and Mary.
Steve
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

<snip>
Your story reminds me of an experience I had. While in St Louis University Hospital when my wife called me they wouldn't put her through to me, when my boss called me they gave me the call. The kind of crap I put up with at the hospital I'm not surprised about lawsuits.
RogerN
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

Don't you just love brain dead automation. My local podunk post office is on limited hours like sales counter open from 10:30 am to 2:30 pm. Reason being low volume of sales at my post office. Not being open for the working class is by design going to further reduce volume and get it closed which I am sure is the goal.
Two weeks ago, I stopped in to get my mail on the way to work when I took the first half of the day off as vacation and when the lobby is open for those with post office boxes. I gave up on rural delivery years ago. Between the county taking out my mail box with the plow every winter and the route driver refusing to deliver because a drift showed up in front of the box after I left for work and finding mail after the thaw froze into the roadway because the idiot tried to rubber band records to the box in the face of a strong west wind, I gave up on free delivery.
Anyway, I tried to open the lobby door during the window that it should be open. No dice, locked up solid. Call uncle to investigate later in day. Lock is on a time lock system, it got out of time so it wasn't open when it should be.
We are both old enough to remember the good old days when humans, maybe not rocket scientists but humans with reasoning ability were in the loop when entering doors or calling a firm. Technology has some down points.
I am very happy to read that your Mary is improving.
Wes -- "Additionally as a security officer, I carry a gun to protect government officials but my life isn't worth protecting at home in their eyes." Dick Anthony Heller
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

Me too, thanks, Wes!
Add pictures here
<% if( /^image/.test(type) ){ %>
<% } %>
<%-name%>
Add image file
Upload

Polytechforum.com is a website by engineers for engineers. It is not affiliated with any of manufacturers or vendors discussed here. All logos and trade names are the property of their respective owners.