Spring has sprung in George's world!!!

After I don’t know how many months of driving him back and forth to hospitals, doctors offices and other appointments, he got up yesterday, got himself dressed, grabbed his car keys (gasp!!) and took himself to get his bloodwork done! Whoo Hoo – HooRay---Yippee!!!!!
Even better, after he left the lab he decided to go to the local auto parts store, the bank and then he went to his favorite grocery store!
He picked up some odds and ends we needed at the house and wandered up and down the aisles, making a point of going to the office to see the owners (he used to always see these folks before he got sick) and speak with them. This is the first time he has actively sought out people he knows and the first time he's tried speaking to anyone outside of family and the medical community. He’s always avoided going where people who knew him before the surgery would be. What a big step he has taken. I am soooo proud of him and so very, very happy for him.

I need to apologize to all of you who have stopped by to check on us. I didn’t realize that it had been so long since my last post. It seems such a short moment since radiation stopped and recovery truly began.
In that time span some of the following things have popped up:

I was rooting through the sample bag the speech therapist sent home with George. In there were round and oval stickeys with a hole in the center and little plastic and foam buttons that snap into them (now I know they are called baseplates!). Ah…this is what the speech therapist was explaining. She said they just peel and stick. Ok- I peeled the backing off, stuck it on his neck, put the little button in…and watched as he tried to talk and blew the whole contraption clear across the room! Seems there is a liquid adhesive that goes on first to help the stickey stuff stick!!! An ah-ha moment if ever I’ve had one.

Somewhere in the back of my brain I thought that once the radiation burns went away and the IV fluids stopped that all would be well. Ummm Hummmm……did I really believe THAT?!?!?!?!?!?

Fighting – and pleading, and begging, and crying – with the insurance company is becoming a way of life. If they aren’t denying a claim (it’s still a NO for the teeth replacements) they are only agreeing to cover partial payments on the medication. Their opinion was that George only needed to take a certain medication every other day. I won that argument – and boy, was I proud of myself. I did it all without one curse word … not a hell or a damn or anything else that was on the tip of my tongue!

Our 15 year-old grandson decided to try longboarding (a form of skateboard) down an ice-covered street, got caught up on a chunk of ice, fell, slid across about 30’ of roadway, ripped the skin off his arm and wrist and tore the ligaments in his knee. He and his friends were filming it … something only a bunch of 15 year-olds would do…and once he was released from the ER he had to email me the footage. I think I liked it more when I couldn’t see what they were doing! 

My apologies to all that live in a cold climate but I have realized that I never, ever, want to live in Alaska, Maine or anywhere else that has true snowfall. Sitting around a warm, cozy fire while snow fell outside and blanketed the world in soft white down was always a fantasy of mine. Now that I have experienced 40+ inches of snow in less than 3 weeks I can honestly say the fantasy is over! I live near the ocean for pete’s sake – not North Dakota!!!! I’ve also noticed I am way toooo old to shovel snow!

Caregiving and snowstorms do not make for smooth sailing…unless, of course, one considers sliding across the bridge from one state to another to visit the surgeon sailing!
There we were, a man that can’t speak and sooo wants to, and a woman saying things that probably shouldn’t be said by anyone, sliding sideways over the bridge and through the snow; 4-wheel drive be damned, a death grip on the wheel, and a husband trying to mime how to handle the slide. Yep- I am not moving farther north…never……ever!!!!!

George is on the road to recovery. I think he is recovering faster physically than he is mentally. He is so very, very tired, still in a lot of pain and still learning how to adjust to all of this. Sometimes he wants to give up and then he has times where he can see better times ahead. The one-day-at-a-time approach is the only thing I know to help him through.

Thank you, all of my wonderful blog friends, for all your continued support for both of us. I have thought of all of you often and you are always in my prayers. I go about my day and think “Ah, I’ll have a chance to catch up tonight,” and then I get caught up in the minutiae of the day and before I know it days and days have flown by.


Now, I am going to post this and go visit your bloggie homes and say HI!

Wandering off the healthcare path...

Normally I write about my experiences with caring for my husband and the things I am learning as we journey through this disease. Today I am wandering from that path to share a slice of my day with you.
I was welcomed to my bathroom this morning by a very cold, very wet, very soggy, rug. One of the nuts holding the tank to the toilet bowl had broken off from the bolt and the water from the tank had drained onto the floor. Off went the water, the rug went into the tub and I cleaned up the flood. Ok- I’ll just throw on some clothes, pop into the local hardware store for parts, fix the darn thing and go about the rest of my day. Easy, right?
Well, after 3 trips to the store (how was I to know that toilet bolts aren’t one size fits all) I have the correct size and can replace both bolts. I go to my shed, get all the tools I need and I’m ready to go. But, first, I have to get hubby ready for the day and all settled in. And I have to get my morning coffee that I haven’t gotten to yet!!!
Coffee pot (single cup) is on and I’m helping hubby with his suction machine. Hmmmmm- it’s not suctioning right… hmph-let’s see what’s wrong… machine pressure is ok, tubes are clear, wand is clean…what the heck? Ahhhh- the canister has a hairline crack and there’s no vacuum. Off with the bad one, on with the new and all is well. Back for the coffee……yeck- it’s lukewarm….better start a new cup. In the meantime, back to the bathroom.
Agggh- got one bolt off but the other is being stubborn. There’s always one, isn’t there?
Got to get my coffee. I pull the cup out and instead of nice, fresh great looking coffee I see what looks like swamp water. Duh- I forgot to put in the coffee. OK- let’s do this one more time…..water..check, coffee…CHECK….cup…check. While I’m in the kitchen I make a quick lunch for hubby…..yes, it’s now lunch time. I’ve been to the store 3 times, gotten hubby dressed, fixed the suction machine, am working on the toilet and still have NOT had my coffee!!!!!!!!!
Back out to the shed for better pliers and back to the bathroom. I…cannot…get…this…thing…off!!! I’m now on my back, on the floor, under the toilet tank…ewww… I really need to clean back here a little better…and beginning to sound like a sailor. No luck. The darn thing is not budging. I WANT MY COFFEE!
Before I get to the kitchen hubby is asking for some help. No problem….I need a break anyway.
An hour later he’s all taken care of, settled back in his chair and I’m on my way back to the kitchen to make another attempt at some caffeine!!!! I dump the cold stuff into the sink and start ANOTHER cup.
Now armed with a can of WD-40 I enter the bathroom to continue the war with the toilet tank bolt. One spray onto the bolt and…damn, the phone is ringing. “Hello....no, honey, I’m not busy…of course I’ll pick you up from school. I’m on my way.” Time-out to rescue a grandson who has missed the last bus from school.
Ninety minutes later I’m on my way back to continue the war with the bolt. The WD-40 should have really soaked in by now. Ooops- forgot to give hubby the afternoon medications, now I have to make a special mixture to tube feed them into him. That WD-40 will really be soaked in!
Pliers, screwdriver, drill driver, wrenches,WD-40, bolts, nuts, washers, towels and a bucket all give my bathroom the appearance of a hardware store. And I still cannot loosen this bolt. One more time and then that’s it….I give up! Wait...Wait...can it be...is it really...yes, yes, it’s moving!!!! The nut is moving…..HOORAY- it’s OFF!!!!!!
Whew…
Fifteen minutes later both new bolts and all the washers and nuts are in, tightened down and the toilet tank is filled with water. The toilet works, there’s no flood on the floor and now it’s time for dinner. I’m going into the kitchen to prepare dinner and Get My Coffee!!!
The day probably would have gone so much easier if I had just gotten my coffee FIRST!!!!

Radiation is OVER!!!!!
For the first time in what seems like forever I do not have to get up in the wee hours and drive into the city. I am not going to know what to do with myself!
I hope this gives some type of closure to my hubby. I'm extremely happy that this part of our journey is complete. George doesn't seem to feel the same way- in fact - he seems rather removed from it. I imagine this is something that must sink in, something he must mentally kick around for awhile.
The doctor has also ordered some medication for his anger and depression- thank goodness - so that may have something to do with it.
Now, hopefully, George can get on with the job of recovering and will have a more positive outlook for the future.
It's been such a long, hard, road but we're both still standing. Recuperation and recovery still stretch out before us, but for today, we're breathing a sigh of relief and being thankful that we've made it this far.

He shuffle steps up the hall banging on walls with his hand and on the floor with his cane. Newspapers soar into the air, diving under the table as if looking for a place to hide. Innocent objects are hurled to their death as Hurricane George roars through the dining room. My husband is having a melt down. A Three-Mile Island, 10 alarm, all-hands-on-deck, meltdown.
Bang! Bang! Bang! The cane hits the floor over and over, harder and harder. To that sound is added the stamping of feet, the crash of glass and the crraack of a wall giving way.
As weak as he is he still has enough force to put his fist into the wall. The resulting crack and hole reveal more about his state of mind than words would ever divulge.
His energy spent, he stands amid broken glassware, shattered dishes, and pieces of wallboard. He is at once horrified and embarrassed. Salt, pepper and sugar add to the crunching under his feet as he makes his way to the living room.
Once on the sofa he collapses into sobs. His shoulders heave as tears roll down his cheeks but he makes no sound. My heart is breaking for him. He keeps mouthing “Why? Why?” over and over. I can’t hug him--his neck and shoulders are too burnt and sore to touch. I have no words to say that will soothe him. His anger and humiliation are too great for tender words or touches. He is not yet ready to allow me into his hurt. I can see he needs to feel this, needs to go through it and come out on the other side and he needs to do it on his own.
This is another kind of waiting I do. One that is so much harder than just sitting in a chair. This is the wait that says “It’s ok – I understand, I’m here.” It’s a wait that doesn’t judge or condemn. This wait says “I’ll be here when you’re through. I’ll be right here when you’re ready to reach out.”
He says he wants to die. He doesn’t want to be a burden on me. His new term is “Living Hell.” He lives there, with no relief, day after day after day. He wants it to end.
At this point I don’t know what to tell him. I can only imagine how he feels and why he feels that way and I don’t know how I feel about that. The things they haven’t told us still trump the few things they did deliver,
Nobody –and I mean No One – said anything about human hurricanes in my home…..I would’ve gone out and purchased storm damage insurance or at least had a storm party so there would be folks around to witness the phenom.
This is another one of those things I know will pass with time and will just become part of the blur that is recovery but…Whew……I didn’t know I was going to need armor! 

Here’s a bit of the healthcare system at its best!

George had to have all of his teeth surgically removed the day before the laryengectomy due to a jaw infection. Without this surgery the laryngectomy could not be performed and George’s life could not have been saved.
We have now been informed that the insurance company will not pay for the dental surgery. They do not cover dental procedures as they are considered cosmetic in nature.
I spent most of the day on the phone explaining to various customer service representatives, supervisors and a clinical care insurance supervisor (whatever that is) that his dental surgery was a medical necessity not a cosmetic desire.
Not only do they not want to cover the surgery but they will not pay for any kind of dentures, implants, etc. The one customer service rep told me the insurance company does not consider teeth to be a necessity! So -- here I am, on the phone, jaw now on the floor, trying to speak in complete sentences and wanting to put my hand through the phone and shake the life out of this woman; all the time trying to digest the reality that teeth are now a cosmetic frivolity not a quality of life necessity or a physical need.
This young woman then proceeds to tell me that among the things they will cover is the prescription medication Viagra. That “it is a medical necessity because it provides a fuller quality of life to the patient taking it.” SHE ACTUALLY SAID THIS TO ME!!!!
I guess God just gave us teeth so we can look pretty when we smile!
I’ve spent most of the afternoon shaking my head. It’s starting to be funny – in a sad sort of way – but this makes no sense. Somewhere, in some office, far, far away from the reality of life, sits an insurance executive with a mouth full of teeth and no love life! :-)

I finally spoke to the surgeon’s office and they are going to assist me in appealing the decision. Keep your fingers crossed….

Here's something I heard today on TV- one of the truly rare times anything on that vast wasteland made any sense -so I'm sharing :-)

"SCARS REMIND US WHERE WE’VE BEEN. THEY DON’T HAVE TO SHOW US WHERE WE’RE GOING."

Huggz,
Quieten