ANNA SEZ HER SHOE BUDGET JUST INCREASED

I guess we'll be hittin' all the Payless Shoes BOGO sales now that she wears two different sizes.

They amputated the zombified part of the left foot this AM. The Doc took just about half of her foot, mid-metatarsal so there would be enough skin to completely close the wound so it will heal better.

So one less thing to worry about. She is already used to getting around on half a foot, so recuperation should be pretty quick.

AND WE'RE OFF...

The Wizard Of Rads called and said that they've worked overtime to get Anna's rocket seat ready and now we're getting ready to take off and nuke the site from orbit @ 1400 today.

It's good to be doing SOMETHING again. This sitting around on our hands stuff was getting old. So 6 weeks and 8000 miles from now, we should be at the finish line for the cancer. I figger the Yota and the Pony* are both gonna get new tires outta this adventure.

Somewhere in the mix is gonna be getting her foot fixed, Dr. This Little Piggy sez we should have a good idea how much is gonna survive in a coupla weeks. We have another appointment on Tuesday to see him.

(*Speaking of The Pony, I wanna say thanks to the folks @ Carmart for all their help in working with me on my payments during this time. I've been able to make my payments, but they've told me more than once to keep my money 'cause I have more important things to do with it right now. I don't wanna sound like a commercial, but if you need a good used ride, get it from them.)

Gotta go, more when we get back.

HERE WE GO AGAIN

We're back to square one. Gotta remake Anna's cradle, the form fitting "rocket seat" that holds her in position for the treatments. Because of this, her first treatment has been pushed back to 02 JULY.

So we're back to sitting on our hands for another week or so...

OFF TO SEE THE WIZARD OF RADS

Just a quickie to blow the dust offa the blog and let y'all know that we're fixin' to head to St. Louis for Anna's first radiation treatment...

OH, and Five Guys Burgers & Fries.

I'll check in later with an update.

Wish us luck.

UPDATE -

No nukey for you. Anna has lost enough weight that the aiming marks on her skin have shifted position and are no longer useable. So now we go back Monday to redo the marks and the form fitted cradle then get the rads.

To keep from being hammered flat by travel, we're headed up this PM and cribbin' out @ a nearby hotel and get an early start tomorrow. Only bad thing about early is Wash U. parking is a pain in the morning.

SLACKIN'

Yesterday Anna and crew went out for a coupla hours and dinner. Today, she's going in to work for a while just to get her feet wet and to get outta the house.

I can't help but think that were we at re-fac, today would be, "This is the way we wipe our butt, wipe our butt.. This is the way we wipe our butt first thing in the morning." day. FYI, you hot-lining butthurt lil' bitch, she's already dressing herself, bathing herself and wiping her own butt. AND she's getting her meds on time and her sugar is under better control now than when she was in hospital.

And speaking of butthurt trouble makers, it had to be someone affiliated with the hospital, because one of her meds was mentioned BY NAME in the report. The med that NOBODY around here carries on a regular basis.

That's pretty much the weekend summary. Of course Anna's bored to tears, but after that last month, I'm ready for some boring. So we just be chillin' at da crib 'til Friday when we go get our nuke on.

Later, taters..

SATURDAY

Billy came by yesterday evening with some most awesome grilled yard bird. Bill, feel free to bring that kind of slop by here anytime.

Right now just sitting here waiting for the bacon and biscuits to finish off in the oven. For anybody that is interested, the best bacon on the planet comes from Fruitland Meat. Hell, pretty much ANY meat from there will blow grocery store meats outta the water. It's all locally raised w/o all the artificial chemical "enhancements" that you find in commercial meat that will artificially chemically enhance your teenage daughter's equipment to appear 10 years older than it actually is.

And the prices are within a few cents of the grocery store. And another piece of advice, cook your bacon on a cookie sheet in the oven. 12-15 minutes @ 425 should be about right to give you nice, flat rashers of that most excellent of meats.

Speaking of which, I think that is why muslims are always pissed off and blowing stuff up... I mean, how happy would you be if your religion said you couldn't have bacon??

Anna has made more progress since she's been home than she made in the last week in the hospital. Being home and having friends and family coming by is the best therapy she could possibly be getting. She is more mobile and more mentally with it than she was before we got home.

I'm smelling bacon, so I gotta go. Will update later today.

HOME

Details later.
==============================

(I started this post on Tuesday, 05 JUNE, but just finished it today, 07 JUNE.)

Today we got all the various departments to give us their best sales pitch for staying in the hospital...

Veinous - Clot in her descending aorta is under control w/ the stent. How much of her foot will survive?

Can't tell yet, we have to wait & see. We still haven't figured out what is causing the clotting problems. We have tested for all the common causes and most all the possibles...

So it is safe to say due to the fact that you haven't drawn any blood work in the last 3-4 days other than clotting time tests, you've done all you can do unless somebody on the team has an "EUREKA!!" moment, it doesn't matter if we wait for that moment here or at home?

No.

As long as I know what to look for regarding changes/problems, and maintain her anti-coagulant meds and if I will report the first sign of something going south, any reason why we can't wait & see @ home??

No.

We're outta here.

Diabetes - It's under control with insulin and diet monitoring?

Yes.

As long as I follow the same regimen at home and report the first sign of things going south, any reason it can't be done at home?

No.

We're outta here.

Rehab - Explain to me what your program consists of..

We work on returning the patient as close as possible to the level of function she had "pre-incident".

How do you do that?

We work on getting her to be able to brush her teeth, comb her hair, bathing, mobility, wiping her ass, "puttering around the kitchen", dressing herself, speech therapy...

We have hair brushes, toof brushes, a bath tub, TP and a kitchen at home. She is already getting up and around with my help and the aid of a walker, both of which we have at home..

Well we have "experts" with years of experience...

Your experts may be able to get her from point A to point B quicker than I can, but we will get there...

We're outta here

(The re-fac lady also said that agitating Anna's emotional state would be counter productive to rehab, and separating us and placing her in a strange place surrounded by strangers, and relegating me to "visitor" status would do EXACTLY that.)

Then there was all the CYA legalese the hospital had to go thru before we signed the papers and GTFO Dodge. We stopped by the Med supply store to pick up test strips for the new glucose monitor, made a beeline to 5 Guys Burgers And Fries for what is quite possibly the best damn bacon cheeseburger I have ever stuffed down my neck, and hauled ass for Jackson and home.

We found our house full of Anna's friends and spent the next few hours just enjoying NORMAL. She made more "rehab" progress in those few hours than she had made in the last few days.

It is so good to be HOME.

ANOTHER DAY IN THE WAREHOUSE

Basically that's what's going on, we're being stored here 'til we can get into re-fac. There's a place up here that will take her, but only as a hospital transfer. And only for 2 weeks. And only after all the Medicaid and SSDI applications and accompanying paper work are submitted to to the Feral Gubmint leviathan for approval. One piece of good news, cancer cases get fast tracked, so it should only take months instead of years to process. Whoo hoo....

Found out that S.E.MO. hospital re-fac would take us, but their multi-gazillion dollar, state of the art, shiny bauble along side of I-55 cancer treatment center is much like a Whopper - Looks real pretty in the ads, but when you want it, it ain't all that. It's all for the best, she'll get better care here than anywhere within 500 miles. I must be slipping and letting my emotions and not my logic guide my thinking to even consider going anywhere but here.

If I can help her hold it together 'til we get to re-fac and outta here, it'll be better. Because she's only been able to grasp what's going on for the last 4-5 days, during which very little "treatment-wise" has gone on, she doesn't know why we have to be cooped up in this room. She doesn't realize everything that went on in the previous 2 weeks that got her back to where she is now, or just how deep in the kimchee she actually was.

They discontinued the I.V. today, but she still has the central line just in case the S.H.T.F.

That's it for today. Tomorrow I spend in the phone rounding up paperwork and sorting out bills.

Later...

WEEKEND AT BARNES - PT II: FIRST DATE

Not much to report today, Coupla docs stopped by this AM to check in. Anna asked one since nothing is happening until we get a re-fac placement, why couldn't she spend the time at home. The doc asked me if I could care for her there, and I said yes. I take the fact that he didn't say, "I don't think so Tim" as a good sign that it might be possible.

I don't see why not, she's only being warehoused here now. No more treatment is being done until radiation starts on the 15th. The only reason she still has an I.V. is to keep the central line open, and it's a hell of a lot cheaper to sit on our bums at home.

First Date = First time we have gotten outta the room without poking, prodding and testing waiting at the end of the trip. We boosted a wheelchair, ditched the I.V. for a little while and went cruisin'. Stopped by the cafeteria for a bite and took a ride all the way over to Wash U. and back.

Being Sunday, we pretty much had the whole joint to our selves. Compared to a weekday this place is deserted, we only saw 8-10 people the whole trip. It did us both good to get out of the room and have some time alone to do what we wanted.

That's about it for today, hopefully tomorrow we can get the ball rolling on some home time and finding a re-fac.

Later, taters.

WEEKEND AT BARNES - PT. I

Nothing much to report.

Doc came in this AM and said pretty much the only reason we're still here is the fact that they haven't found a rehab facility (hereinafter known as re-fac) to take us. The doc cited one of the problems as lack of insurance, but the social worker said the other day S.E. hospital re-fac was interested in taking us, so I may have to reconsider going back to Cape. Depending on Anna's determination and progress, in-patient rehab may only take 3-4 weeks, then out patient 2-3 times a week. Radiation treatments are 5 days a week for 6 weeks...

But can I trust S.E. cancer center....??? Anybody out there know anything about them or know anybody that has some info??

Anna is chompin' at the bit to get outta here, can't say I blame her. Being in Cape would allow for more friends to visit more often, and that's good for her morale.

Well, that's it for today, tune in tomorrow for another exciting episode of Weekend At Barnes...

TODAY BEFORE IT'S TOMORROW...

View of St. Louis Science Center looking toward "Dago Hill"

Today - Got to sleep in 'til almost 0730 before the docs started coming in. Nothing new to report on the diagnostic front, but they finally have the information they need to know what they're dealing with. The work from S.E. Hospital finally all arrived, the PET scan yesterday and a Radiation Therapy specific CT scan and MRI were done today. Now to get it all reviewed.

Optimally, a hysterectomy and surgical removal of the surrounding tissues possibly backed up with minimal radiation would solve the problem. But due to the heparin treatment for the clotting issue, that's right out. So the preliminary plan is for med-high level doses of radiation from internal and external sources, 5 days a week for 6 weeks. Tentative start date being 15 JUNE.

This plan also eliminates the idea of getting rehab in Cape. While there is a "cancer treatment center" affiliated with S.E. Hosp., same as the rehab center, I don't trust them to nuke a TV Dinner, much less a potentially life threatening cancer in my wife. They may be quite capable, but I ain't taking that chance.

Anyway, after hiking across the complex and back and a mini-eternity spent in Radiation, we get back to the room and I get the first chow I've had in 18 hours and the chance to sit, relax and digest the info I received from Doc Nukem. For some reason that escapes me, Anna's I.V. pump needed tending to. So I silence the alarm and call the nurse's station to report the alarm. After hitting the "silence" button 8-10 times, Not-Our-Nurse comes in to resolve the problem.

Somewhere in the process, Nurse Allthumbs yanks on the line hard enough to get Anna's Ativan addled ass to moan in pain, but fortunately the new line stays in place. And speaking of yanking on things, another Registered Nuisance that helped move Anna from the transport gurney to her bed tries to remove excess bedding from under her by yanking the hell out of it. Both of them were cordially invited to GTFO and I did it myself.

How is it that a former medic who hasn't dealt with a patient in over 20 years can get it right, but "Professionals" who look down their noses at me and allegedly do this every day get it so wrong?? I swear the next walking clusterf@&k that pulls one of these bonehead moves is gonna find out exactly just how impact resistant these 17th floor windows are....

Well, it's almost tomorrow again, so I'll wrap this up. It's the weekend, so I don't expect too much to be going on, but if you hear a news report about someone taking a swan dive off the top of Barnes, you'll know something happened.

G'nite.

YESTERDAY'S POST = O.B.E. (OVERTAKEN BY EVENTS)

Yesterday started off pretty uneventfully. Usual parade of docs, followed by trip to have a sonogram of her arms. This is S.O.P. in clotting cases like Anna's. They found an old clot in her upper right arm that the body has already built a bypass around, so no worries about having the same problems as with her foot.

Then it's off to PET scan. I understand they got good imagery so now we wait for somebody to interpret them and go from there.

Then it's back to the room to hang out until the therapy folks stop by to do their thing. We got Anna up on her feet for a minute or two and the goal was to sit in the chair for about an hour. It turned out to be over three.

The patient care tech nurse's aide came in to take her vital signs and I mentioned to her it was time to get Anna back in bed and could she get the nurse. She said she could help and we started getting set to move her.

Instead of going around the chair , N.A. Two Left Feet starts to step over the I.V. lines, and promptly demonstrates why you DO NOT STEP OVER I.V. LINES. Before I can say, "WTF ARE YOU DOING?!?!", she stumbles and stomps on Anna's lines.

In addition to the exquisite pain caused by jerking the hell outta something that is stitched to the side of the neck, the catheter* running into the Superior Vena Cava gets pulled almost all the way out. There is only about an inch left in her neck, just enough to keep the blood from pouring out.

(*The central line is actually 2 catheters, one inside the other. The outer one is stitched to the neck and the inner one is threaded thru it to the superior vena cava.)

So I hit the call button and tell 'em I need the nurse now, N.A. Nitwit sez, "let me take a look..", I tell her she's done enough damage, she's not to be near my wife again and to get the hell out. The nurse comes in and assesses the damage and sez she'll have to call the doc to find out what to do, and he'll probably want to...

"This is what's gonna happen. The doc is gonna hem and haw and have you jump thru hoops while he tries to assess the situation over the phone, wasting time and he will eventually come to the decision I already have - The catheter has been pulled too far out to try and re-thread, so she has to go back down and have a new one put in. Then more time will be pissed away while the team gets their shit together to do the procedure, then even more time is wasted while transportation gets their thumb outta their ass and gets someone up here to take her down, and all the while the therapeutic level of heparin in her system gets burned away and we are losing ground."

"Well, I'll check with the doc..."

"I just over ruled every doctor in this place. So you get back to the desk, get on the horn and let all concerned parties know the game plan and to get ready to get it done and hope I don't decide to make everyone's life difficult by raising hell about this incident, and PRAY there are no complications."

About 2 hours later we're back in the room with a new, sturdier central line in place and more apologies than I can shake a stick at.

===========================

That was yesterday.