Friday, April 30, 2010

Still waiting. Dum dee dum dum....ZZZZZZZZZZ.



Still waitin and waitin and waitin.

Will Tuesday get here before our lil QV (Queasy Vaquero) falls asleep in his cowpoke attire and tips right over?

As my good friend asked me today, "Would it not have been wise for some doctor somewhere to have asked to have had him seen during this long interim when he is so ill?"

"Would seem so to me," saideth me. I was watering my seedlings outside while we talked, which often makes me uncharacteristically laconic.

"His kidneys maybe could've gotten looked at during this waiting time, with those bad function scores?"

"Would seem so to me."

"His nutrition checked in case he needs supplements, with losing all that weight and still being unable to eat, and anemic, this long after the surgery?"

"WSSTM." Here I go from laconic to acronymical to emphasize the ongoing correctness of her serial observations.

"And to look into the wisdom of going this long without chemo?"

"WSSTM."

"WSSTM, too. WWHD?"she asked, the acronymical laconicity having become contagiously appropriate. (Along with my amusement at making up words like laconicity as I write this blog.)

"WWHD? WDYM?"

"I mean, what would House do?"

"ABT."

"ABT? You mean 'Anything but this'?" she asked.

"WSSTM."

"M, too," she agreed.

Doesn't it SSTY,too?

Thursday, April 29, 2010

Our Lithping Robot



As briefly mentioned yestermorn, we have a lisping robot living in our kitchen.

More specifically, she is a robot, and she lisps. Cannot get the "s" sound right to save her mechanical life.

The home nurse people installed her and plugged her into our phone line. She sits on a countertop in a corner of the kitchen. She is wired to a square scale that sits on the floor. (Directly in front of my pots and pans cabinet, requiring me to keep my pots and pans in a large attractive BOX throughout the remaining tenure of the Lisping Robot. My housekeeping skills being poor to begin with, the pans-in-a-box look adds much to the scenery in our home.)

So every morning at 10 am, we, and several of our dogs, are catapulted into the air with shock when a LOUD VOICE in the kitchen suddenly yells out: GOOD MORNING! IT ITH TIME TO TAKE YOUR VITAL THYNTH! Oh, for a font option that would let me type those words in the size that the Lisping Robot speaks them at 10 am. You could read them from across the room.

So Bill hobbles out and steps on the scale, and finds out his weight. Then he is instructed to sit in a chair, during which time he applies medical gizmos to his arms, finger, mouth, etc. and finds out his oxygen levels, his heart beat speed, his temperature, and his blood pressure. Then Mademoiselle Robot asks him if he is especially tired today, if he wants his clinician to call, and a few other questions.

After all the information is in the possession of our Lisptress, she automatically dials the home health office and transmits the information to them, and they forward a copy to His Bladderious Curmudgeonry at Duke who, I suspect, uses his trash receptacle to forward this important information to the nearest landfill.

The thing is, she lisps.

What kind of casting agency would select a woman who lisps for the job of being the Voice of the Kitchen Robot?

Yet, there is something about a lisp that begins to endear itself. We have not only grown accustomed to her lisp, but we have come to strangely adore it.

"Playth the blood preth-er cuff on your arm and retht your arm ath inthructed by your clinician,"
she commands.

Oh, thay it again, PLEEEETH thay it again!

I suppose that the most important thing we have learned from our Robot is this: When you place two adults in a small house in the mountains and give them absolutely nothing to do but sit in a quasi-morose, mindbendingly boring silence, waiting for nothing more exciting than the next doctor appointment to transpire, said two adults will become so desperate for amusement that Lisping Robots will begin to seem compellingly fascinating, to such a degree that said Robots can even end up as the headline topic of an entire blog post.

Loving you from Robotworld,

Cowpuncher and Diamond Lil

Wednesday, April 28, 2010

Holding Pattern

Maybe we're feeling news-less because we are in the old holding pattern, waiting for the potentially Big News next Tuesday when we go to Duke and get test results and find out if the cowboy can start chemo. And stuff.

My daughter Sarah flew in from LA yesterday. She will be here a month. Today is her birthday! She helps me out with such things as the nefarious tasks upon which I have procrastinated into the kingdom of smithereens. Such as taking the dogs to the vet. Or taking the dogs to get grooming things done. Man, I hate doing those things! Sarah is a professional singer/songwriter and computer consultant. My son is a professional singer/songwriter, too. I was, too, way back when...

Anyway, back to Mister Buckaroo. I'll let you view Bill through Sarah's newly-arrived eyes:

"Oh my gosh, you are so SKINNY!" she said, after seeing the 50-pound-weight-loss pony boy lying in bed. "At least you aren't as white as you were in the hospital," she also noted.

He was lying there grinning. "Hi, Sarah!" His eyes looked big and round, and his smile looked tired, but always sweet. Like him.

"You look great being so thin!" she added. "Want mom to make you some dinner?"-- the latter question somewhat compromising the compliment.

He made a big face like, "Ohhhhh, don't talk about food."

And in a few minutes, he was asleep again, like he is most of the day.

In the next post, I hope to tell you about our ROBOT. Yes, we have a sort of Mrs. Robot machine living in our house, keeping tabs on Bill. Oh, it's not a person. It's really a machine.

And she has a lisp.

More soon! Don't go away!

Monday, April 26, 2010

Trying not to bum everyone out!

We were going to post something today, but it was another bad day.

I asked Bill if he, as I do, feels bad about how it seems like we are always putting up negative posts.

He does feel bad about that. I do, too!

So I told him to try to think of something positive to say. He thought for about 30 seconds, then he said, "Maybe tomorrow."

So.

Maybe tomorrow.

Love to you.

Will post something new here in a few hours...

Not THAT new...but at least an itty bitty Monday update!

Till then....

Friday, April 23, 2010

We're Boring

We accidentally skipped two days of posting, while we waited for Something to Happen so we'd have something to post about. And by Something, I don't mean Anything in Particular, I just mean Anything. At. All.

But here we are, with nothing new to report.

In un-new news: Bill feels about the same, but no worse! He is still pale, still losing weight every day, still has tachycardia. He still has equipment problems with his post-surgical gear, which problems keep him up a lot of the night. Still tired, can't eat much, sleeps all the time. Nothing new, as you can see.

We look forward very much (naiive hope-addicts that we are) to the Duke Day, because of the hope of getting more information. We plan to force His Obdurately Nonforthcomingness to give us the REAL facts--as in a prognosis--a best-case and worst-case spectrum prognosis.

At first I thought Bill wouldn't want to be present to hear the "worst-case" part of the guessing, but that ol' cowboy still has tricks up his cowboy sleeve. He surprises you! He DOES want to hear the whole truth. He says.

If he throws up his cowboy beans after hearing anything scary, he won't be allowed back in.

The only other kind of bad thing going on is that Bill's kidneys have now been malfunctioning for more than three months, which (according to my doctorate from the School of One Hour of Googling on the Subject) qualifies him as having Chronic Kidney Disease. His kidney function has been down since chemo, and right now his blood tests show that he is in Stage 3 of five possible stages of kidney-funk. Or whatever they call it. (Kidney Funk means I had to make up a name for it because I forgot the real name.) And if my guess is correct, it means that his kidneys might be causing most of his current symptoms by not Squirting out a Particular Thing (you can see I picked up all the medically accurate nephrological terms while I googled) which Thing is supposed to make his bone marrow make red blood cells. Thus, anemia. Thus no appetite, and small fevers, weight loss, whiteness, extreme fatigue, etc.

On one hand, it would be nice if all his current weirdnesses could be attributed to Kidney Funk and not to Something Worse. But at the same time, we both hope that Kidney Funk does not disqualify one for chemotherapy.

Well, now you've seen a quality of mine that Bill has put up with for lo, these many years: Even when I have absolutely nothing to say, I still talk.

Love to you!

Tuesday, April 20, 2010

The Great High Prince of Bladderdom Re-enters the Storyline



Yes. His Most Great High and Ever-Regal Master of All Bladderdashery has re-appeared in the storyline.

This noteworthy moment arose following a telephone call placed by the humble cowboy.

"What a coincidence," they said at the office of His Celestial Bladdersphere. "We were JUST mailing this information out to you this afternoon!"

Mmmm-hmmm. Sure you were.

So May 4th, the cowboy and Diamond Lil pack up the ponies and trot down the mountain again to Duke to give them one more chance to make us into believers.

On that day, they promise, Bill will gets "lots and lots of tests." And at 1 pm, we meet with His Humbuggian Harumphness to get those results.

One great thing that might come of it: Last time Bill got chemo, Duke's Mighty Surgeon of Majestic Unmentionables transferred Bill's entire care to the Oncologist at Boone. Files and all. Should that happen again, we would certainly see if we could, thereafter, STAY with our beloved Oncologist in Boone. Or at least figure out a way to have permanent access to her, for the day to day problems that are, at present, not really getting addressed.

Yesterday ended with Bill being unable to eat pretty much anything at all, due to dramatically increased nausea. Today, the home nurse comes to check on him.

Love to all...

Monday, April 19, 2010

Things Could Be Worse

Things could be worse. You could live in this cute little Icelandic farmhouse.

Or you could be a patient at Duke. (They STILL haven't called us back!)

This morning, his cowboyness woke up craving orange juice. Normally, in this house, we have enough orange juice to carry us through till the 22nd century. But of course TODAY, did we have any?

Nopers.

So I put the puppies in the SUV and drove to the bottom of the hill and got him some.

He drank a whole serving! He normally hates orange juice. Hooray for the awakening of healthy cravings!

As for bad news, he has a fever today and his heart is still racing. Also, an equipment attachment malfunctioned at 5 am, which he found upsetting, but I won't go into details on the amount of work required to fix that situation. And how much he didn't feel like dealing with it at 5 am.

And I am beginning to worry more each week about the fact that he isn't getting chemo, while it has been a whole month since his surgery. I try not to imagine his cancer finding itself on an uninhibited month-long shopping spree in his body, with nothing to take its credit card away, and no rips being given by his doctor.

[Yes, Monty B., a pox on the devil-may-care Blue Dont-Give-A Devil attitude his aptly sobriqueted doctor is evidencing.]

But as for better news, our boy seems much stronger. Like when he gets up and walks to the kitchen, he isn't wobbling and bobbling and grabbing on to every door post. SOME door posts, yeah, but not ALL of them.

Love to you, and if nothing else, Happy Not Living in Iceland Day!

Sunday, April 18, 2010

Sunday

It's been a quiet day at the Getting-Closer-To-Okay-Corral, and quiet is good.

The cowboy feels about the same, but no worse! That's progress.

He has only eaten the equivalent of about five bites of food all day and had to take medicine to stop the resulting queasiness, but he kept it all down. Yay!

He's on the couch (this is an improvement over being always in bed) and watching a golf game.

So I just now said to him, "Hey, Billy, what would you want to say on your blog? I'll type it for you."

So he said this: "Nothing new, really. A lot of lethargy, a lot of sleepiness, uhhhh, life punctuated by naps, uhhhh, washed out but still feeling better."

Then he added this:

"I feel well enough that I care that the Phillies lost today."

Well there you go. You can take the cowboy out of the baseball game, but you can't take the baseball game out of the cowboy.

And before you spend one second of your valuable time trying to figure out whether the previous sentence actually made sense or not: it didn't. It just sounded good. Actually, it didn't even sound that good, but I'm too lazy to erase it.

Torrents of love to you. Hope you're having a lazy Sunday, too.

Saturday, April 17, 2010

Inside our house...


This is a picture I drew of the inside of my kitchen.

But I digress.

Today, Bill and I are both full of apologies to you. We are apologizing because we now have to pull back quite a bit on our communication with everyone, starting today.

I will continue to post progress, probably daily, on this blog, but we both have to bid a love-full but necessary adieu to everyone--just for now...

Bill and I are both having a very difficult time, physically and emotionally, right now, and we both need to rest. Just like the saying that one can't be too rich or too thin, there should be a saying that you can't have too much love in your life.

I don't agree with the "too rich or too thin" part, but it simply IS true that you can't have too much love in your life!

And because of you, we have SO much love in our lives right now, when it means the MOST.

The only trouble we're having is that we have found that we are not keeping up with all the communications we are receiving, and we feel like we are letting you down.

In other words, on one hand, we are thrilled out of our minds that so many people care so much about Mister Billy!

But we are FALLING DOWN ON THE JOB at doing our part to respond to your beautifulness!

We are failing to return the phone calls we wish we could return, and failing to write back to emails or to respond to cards--we're not even keeping up with replying to offers of food and kindnesses like that! You see? We are being TERRIBLE!

So this morning, we decided to just let everyone know that we are taking a break from communicating--and simultaneously, we are apologizing like crazy...

We both KNOW that you will completely understand, but still, we hope that this doesn't offend anyone even in the tiniest way.

Meanwhile.......

In today's health news, Bill isn't having such a great day. Duke never did call us back. And Bill still has tachycardia, is losing weight, is pale as the North Pole, and had quite high blood pressure today. He feels a tiny bit stronger, he thinks, but still has to take medicine to keep from throwing up after he eats, and he almost faints when he walks, and--you know--it's getting so old.

But we do understand that healing from surgery takes a LONG time--and all his problems could be related just to anemia which could be resulting from his kidneys not being at their peak, due to the lingering effects of chemo and of surgery and complications and such.

So we aren't feeling doomed.

Just a little bit adrift, medically, and mind-warped that Duke never called back about the follow-up appointment which was due this past week at the latest. Please think TWICE before encouraging anyone you know to EVER go to Duke for hospitalization of any kind.

So forgive us--and we know you already do--but we can't come out and play right now.

I pray to heaven that you haven't felt ignored by us--that would be tragic, because you have been angelic--and we need your love and your prayers, but we can't (hey, let's really mix up the metaphors) return the tennis ball right now.

More tomorrow, here on the blog.

We love you. That's the thing. We love you so much.

Friday, April 16, 2010

Did somebody say the word, "butter"?


Did some certain someone just say, "I feel BUTTER"?

OR DID THEY POSSIBLY SAY, "I FEEL BETTER!"?

Thursday, April 15, 2010

Sometimes a hug is all there is to say...


As much as I wish I had better news, there ain't none today.

Bill says he continues to feel "worse every day." He lost more weight today, has a low grade fever, has no improvement in his tachycardia (heart continuously racing over 100 beats per minute) or his lack of appetite; he still looks so white, and sleeps almost all the time.

We've still heard nothing from Duke, but it's turning out to be just as well, because he is too sick to ride in the car for three hours, at this point.

The one good thing Bill has right now is that YOU just took the time to check on him because you care about him, and that is the little light in his life that never goes out--the fact that you care about him.

May every blessing come your way, and may the kindness you have shown in your thoughts and prayers for him be returned to you a thousand-fold. THANK you so very, very much.

Wednesday, April 14, 2010

Shrinking Cowboy



Thinner and thinner is our lil cowpoke! I'm just about bigger than he is, now, as you can see from this photo.

News of the day, so far, in Q&A format:

QUESTION: Did Dr. Bladderbrain's office ever call me back in response to the two--TWO--messages I left reminding them that Bill was supposed to have his followup visit within 10 days of leaving the hospital so as NOT to forestall the beginning of chemo so as NOT to allow any wandering cancer cells to set up housekeeping anywhere in his body?

ANSWER: No, the Bladderbrain office did not return my call. I sat here ALL DAY yesterday, waiting for the phone to ring. Nothing.

QUESTION: Did Bill lose three pounds yesterday?

ANSWER: Yeppers.

QUESTION: Is Bill's heart still beating too hard, and his blood oxygen level registering at a low number?

ANSWER: Yeppers.

QUESTION: Nonetheless, did Bill say that yesterday he felt a tiny bit better for the first time?

ANSWER: Yeppers.

QUESTION: Is there good news about the healing of his incision, and some improvement in his abdominal situation?

ANSWER: Yeppers. Things are improving in his abdominal situation.

QUESTION: Was Beth googling Wake Forest Oncologists this morning, as part of a newly hatched scheme to potentially get away from Puke--I mean, Duke--and try to find a medical situation where he actually receives FACTS and CARE? (He still hasn't been given the complete information in his pathology report by anyone at Puke. The only reason we know what his pathology report says in its entirety is because I got a nurse to print a copy off of her computer in the hospital.) Did I make several calls and attempts trying to get the pathology report some other way? Yeppers. Were those all ignored by the Bladdermeister and his staff? Yeppers. Is this a DIRECT QUOTE from Dr. BladTheImpaler Himself when asked if he would please just send a copy of the pathology report to Bill in the hospital: "No! We're not running a FEDERAL EXPRESS office around here!"

However many questions were in the preceding paragraph, I'll let you guess the answers.

Hint: The first letter is "y"...

Tuesday, April 13, 2010

Monday, April 12, 2010

Cowgirl Foiled!



Cowgirl didn't get the job done. Tried awful hard, though.

Phone call attempts:

Dr. BladderKing: out of town.

Dr. BladderKing's on-call bladder acolyte substitute: in surgery all day, can't be reached.

Dr. Hometown general practitioner: on vacation all week

Dr. Hometown general practitioner's stand-in: bingo! We got worked into the schedule.

They took Cowboy Billy's blood. He looked so white, we were making Dracula jokes. And the poor cowboy felt so physically terrible that he couldn't even sit in a chair in the waiting room and wait for the blood results--had to go lie down in the car.

But the blood test results weren't what we expected. Bill really wanted to score at least one transfusion, desperate to feel better.

But according to Dr. Hometown general practitioner's stand-in, even though TWELVE of Bill's blood test results came back abnormal, the doctor didn't feel that any treatment was necessary.

WHAT!

His kidney function was down to stage 3 (stage 5 means dialysis) of filtration, with a Urea Nitrogen of 26, when the normal range is 7 to 18. Plus his creatinine was high (kidneys).

His liver function was fouled up with an ALT score of 55, where normal is 10 to 40. This is the first time he has shown liver problems.

His red blood count was low. Hemoglobin was low. Also low were HCT, MCH, and MCHC, which, according to my pitiful attempts at googling test score meanings, show that he is missing red blood cells, and that the ones he has are "pale." This might be called hypochromic anemia. Either that, or I've messed up the name of it, which I saw on wikipedia, about 24 research pages ago.

Finally, his platelet count was really high. The normal range is 165 to 385, and his score was almost 500! This means he has a much-increased risk of a blood clot.

Well, our cowboy was disappointed to find out that he was sent home empty-handed. He was ready to kick a cactus! Lasso a lizard! Rattle a rattlesnake. Stomp on a heifer's hoof. (Somebody stop me.)

And I felt like I didn't win the stuffed pony for him. Nothing I did today led to any relief for him.

So plan B: Tomorrow, His Royal Bladderness is back at work, so I'll call his nurse in Durham and see when we can get down there for the followup visit. At that time, I'm sure they will take blood, and maybe they can find some way to help the bruthuh out.

Cause the bruthuh needs helpin' out real bad.

Love to all.

Sunday, April 11, 2010

Tired Sunday



The Cowboy still feels reeeeeeeeeeeeeeeeealllllllllly tired.

But he didn't lose any more weight yesterday, and his temperature is normal today. Hooray for that!

He still can barely eat, and even suggestions of food make him sort of queasy, but he is trying to drink Ensure, and eat the occasional scrambled egg or piece of toast. A little soup once.

I'd say he is still coming in just over 500 calories per day, which is way insufficient for him.

Oh yeah, and he drinks decaffeinated green tea on ice, unsweetened, and likes that.

We both look forward to tomorrow, when ol' Diamond Lil gonna pull on her boots, bust out the lasso, and wrassle us up some decent medical care--blood tests, maybe an IV, maybe some O2, and whatever else our brave boy needs.

Till then!

Saturday, April 10, 2010

No News Ain't Always Good News

If you want the story point-blank, here it is.

And it probably won't have much humor in it today. The blues are upon us both.

But I will say that God was brilliant when he thought of throwing dreams into the mix for sleeping time. What a nice break from reality! Last night, while I was dreaming, I was suddenly able to rub gravel between my hands, and it would turn into glowing multi-colored stars and float up into the sky. But then a certain famous magician in our neighborhood came by to watch me do this, and it wouldn't work any more. I think I was inhibited. hahaha :)

But THEN, in the same dream, my next-door neighbor Jill called and said, "Don't forget the party that's starting in one minute! You're bringing the duck!" A PARTY? IN ONE MINUTE? DUCK? hahahah So (this is still in my dream) I looked in my oven, and there was this beautiful roasted duck--didn't know I could cook a duck!--and I carried it over to their house, and there was a big party, and all we all did was laugh, which is what happens at their house in REAL life, too. So darling neighbors, thank you for eight wonderful hours of partying, and ducks, and magic gravel last night!

In real life, another neighbor is being particularly angelic in a variety of ways. You know who you are!

And every neighbor has said, "Anything you need!"

We are simply dumbfounded by the outpouring of love and care!

I'm telling you, for going through suffering, THIS is the neighborhood to be in!

Anyway, in more sobering news, Bill's status is actually deteriorating. Not even not-improving, but actually getting worse. He is losing weight at an astonishing rate--three pounds Thursday, four pounds Friday. Almost 40 pounds since mid-March. He has had a fever between 99 and 100 since he got home. He can't eat, less than 500 calories a day is all he can manage, he can't catch his breath when he walks, his heart is pounding, he is so white and yellow, and his oxygenation is low.

Thank heaven we have home nursing services. They are having him treated Monday, and getting him on some kind of more aggressive care.

I personally think (like I know--but I feel free to pontificate nonetheless) that he needs (1) a transfusion for extreme anemia; (2) an IV for nutrition; (3) maybe some oxygen until he gets his body back together.

He said he would rather literally die than go back to Duke. Both of our experiences there were really pretty terrible. We can't recommend it.

But if he can get a referral back to the Seby Jones Cancer Center in Boone, we both LOVED that place, and they do everything there, and we can switch his care to Boone for a while, and that marvelous, marvelous place (Seby Jones). (Bill's surgeon is on vacation, so we can't reach him at all, so we have to get a local doctor to give him a referral).

Anyway, Bill is very sad right now, and exhausted, and is struggling to keep up his hopes. My energy is back, but the care requirements are kind of around the clock, so it's not a picnic in Central Park or anything. But I'm not in that shock I was in until yesterday.

Still, I'm not yet able to keep up well with email replies and phone and such, but I say that with anxiety: anxiety that anyone would think we didn't profoundly appreciate the love that everyone is pouring toward us, and the prayer, and the thoughts! Ohhhhhhhhh, it's all that's keeping us going! PLEASE KNOW THAT!

And THANK YOU for continuing to care for the Cowpoke, even though we are being kind of invisible right now, and even though you might not FEEL as appreciated as you deeply deeply ARE.

WE LOVE YOU!

God is light.

Wednesday, April 7, 2010

No News

Nothing new, just waiting for Roy Rogers to start feeling more perky.

I'm not feeling too perky, either. I saw my analyst/my MD about how I feel, which is that I feel not good at all. Consensus is that I am experiencing a big episode of burnout, from going through too much for too long a time, half of it being unexpected events, and that I need to rest for a while until my adrenalin comes back. I also need a lot of time to think, to process a lot of things that happened over the last three weeks--things and facts that I didn't expect. That's probably all I should say about that for now.

So our house is very quiet.

If I don't answer your emails quickly, or return calls, etc., it's only because I'm so tired right now. We both adore your every word, and couldn't have gotten through this without your overwhelmingly beautiful love!

Nighty-night from the quiet ranch.

Tuesday, April 6, 2010

Po' Lil Cowpoke--Not Up for Visitors Yet



In case you were wonderin'--our boy isn't up to having visitors, yet. We've had some inquiries, so I thought it would help if I would start to keep you up to date with his ability to have company.

Not quite yet.

It's all still a little bit hard, and a little bit sad, and a little bit scary around here. And it's taking a lot more getting-used-to than either of us ever imagined.

But you probably already figgered that. Or, if you've done something like this, you knew it would be this way.

We didn't.

I'll keep posting, though. Stuff is still funny around here, sometimes.

Love,

Your adoring cowpokes (and at least one of our puppies--see photo)


Here's kinda how Cowboy Billy looked yesterday when he arrived home on his hoss.

A little worse for the wear!

He's so blissfully happy, though, that he can't stop saying, "Do you REALIZE how GREAT it is to be in your OWN HOUSE?"

But if you were to see him, I would prepare you: He has lost 35 pounds (!!!) in three weeks, and he is white as a herd of Montana sheep, and his eyes look as big and round as a plate of cowboy beans. But the yellow is gone!

Yesterday, his home nurse came for the first time. She taught me how to change his ostomy and how to stuff gauze deep into his abdomen incision where the stitches came out. At first I had vowed that I would never, ever, ever, ever be able to do any of those things, or even watch while someone else did it.

But when I realized I was cornered, I excused myself, and ran into my prescription medicine cabinet, and an hour later had learned the important life lesson that almost anything can be mastered after a valium.

Of course, I may never eat again.

In which case, by the time you see us, we may both look like piles of sticks after an ice storm. But you'll know it's us, and not really sticks, when you see the deputy badges, and the cowboy duds, and hear our spurs a-jingle-jangle-jinglin.

Bill will be the one with the bag.

Monday, April 5, 2010

HAPPY DAY!



He's coming home! He'll be here by 5 pm. That's all I know right now!

OH HAPPY DAYYYYYYYYYY!!!!!!!!!!!!

(Please, Lord, could we try it with no ambulances this time?)

Sunday, April 4, 2010

We've Got Daffodils!




Bill emailed me to advise that bouquets of daffodils began arriving--with just a little help from laxatives--at 11:50 a.m. today and have continued! Here is a picture of almost-Bill and almost-his-nurse REJOICING at the floral effusions!

They are talking about a release tomorrow if he does well with a dish of pasta tonight.

This is joy unspeakable and full of glory!

I have never loved daffodils so much.

Or my copiously green-thumbed Cowboy!

WOO HOO! Great joy! What an Easter!

I'll let you know the minute I hear the good word: released!

Thank you for continuing to read along. You bless us so very much.

Think: Daffodils, daffodils, daffodils!

Love to all.

Pick A Daffodil





Okay. So that's NOT actually Bill in the photo. But try googling cowboys and daffodils and you won't find squat. So that was the closest I could get to a cowboy picking a daffodil.

ALSO...before you think this post is going to be a gooey, sweet Hallmark card about springtime and daffodils...that's not going to happen, either.

In fact, after you read this post, you may never pick another daffodil in your life.

Here's the deal.

Emma is with Bill at Duke, and she is faithfully sending reports that I can post on the blog for you. Below, you will see her first two posts.

However...because Cowboy Billy's problem has to do with an intestinal blockage, there is the delicate problem of how to express his progress in....what would indelicately be referred to as "going potty."

So I have come up with a euphemism for that. I tried to pick a nice, clean, pretty euphemism, seasonally appropriate. And what I've come up with to express the thing that Bill needs to do, and which laxatives help with (you know what I'm saying, right?) is that Bill needs to "pick a daffodil."

So in Emma's reports, where the wording requires it, I have inserted brackets with the phrase [pick a daffodil].

Here are her first two reports:

x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0

Friday night

Beth, you just take as much time as you need. you still have months of
this, i would like to do as much as i can while here. play with the
pups, take naps, eat green foods.

we had a nice day today. he slept most of the morning and then woke
up with some serious energy. took a couple laps, shaved, changed his
clothes, almost [picked a daffodil] (but didn't). then we played gin rummy and
listened to bluegrass for hours. he is sleepy from all the action so
now he is watching a basketball game and napping off and on. he
thinks maybe after another stroll tonight he might possibly [pick a daffodil].
fingers crossed! if he does, and if the x-rays tomorrow look good,
he could potentially be sent home tomorrow. my guess would be monday,
however.

i'll let you guys know if anything happens.

love to all!

======Saturday night==============

everything went really well today. getting closer and closer to [picking a daffodil]
he thought he had to [pick a daffodil] a few times and his stomach is all rumbly and
he is passing gas regularly - all good things. we convinced the
intern dr to put him on something, in hopes of letting
his bowels stay active.

so, they gave him something different
tonight. the doc said she was waiting for his kidneys to be tip-top
before giving him a different kind of med and they are in great
shape!

a wonderful nurse took over duty tonight and was taking SUPER
good care of him. changed his bandages in record time and gave him
numbing pads for his tummy. when i left he was happily watching a
duke game and nodding off. they said his x-rays today looked pretty
similar to yesterdays but maybe the ones tomorrow would show enough
improvement to start talking about leaving.

he is getting fairly stir crazy and i think another day is more than
he can handle but OH WELL! we will play more cards and stay as
distracted as possible. maybe there will even be an easter mass in
the chapel?

hope you are doing well and not overwhelmed.
talk to you soon!

loves
x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x0x

Why are these people smiling?

Saturday, April 3, 2010

"I Mad You Lovely."

Bill is still at Duke.

Emma flew in from Wisconsin and is staying in Durham, taking care of him in the hospital like I was doing.

I finally fell apart emotionally Friday night and had to come home. It all hit me at once, and what a blessing I held together until Emma arrived. I came back to Blowing Rock early this morning, got my crying and hysterics out of the way alone, on the road, and let the reality of the whole thing begin to really sink in. So now I'm resting intensely until Emma brings him home, whenever that may be, and I'll be ready to pick up taking care of him here.

His status: They just don't know what is going on. His pain is better, but he still has terrible cramps.

He still isn't allowed to even sip water, is being fed intravenously, clear sugar/salt water.

They're testing him for lots of things, including the dreaded C-Diff, the new hospital-acquired superbacteria. They DO know that his kidneys are not functioning exactly right, and his white count is high, but they can't find the infection.

He feels relatively peaceful, but looks absolutely exhausted and drained and thin. And so yellow.

As he and I like to say to each other, "What a long, strange trip it has been," an old hippie quote, I think.

We talk by phone now, and as we were hanging up today, I said, "Remember that I love you madly."

He said, "I mad you lovely."

"Did you mean to say that?"

"Yep."

"You are the funniest man I've ever known. I mad you lovely, too."

And I do.

Happy Easter/Blessed Pascha.

Friday, April 2, 2010

First Post from Duke, Chapter 2

Bill was in ER until 2:30 pm today, Friday, and has been returned, now, to the 6th floor, to a really deluxe private room.

There is no treatment yet except his continuing suction of his stomach and small intestines through his nose, with no improvement in the blockage.

The doctors are at a loss to figure it out, at this point. That's a real confidence builder, isn't it? We have no idea what will happen next.

He is back on IV fluids and has pain if he is jostled at all. It's all in a new area, his left side, where the blockage was detected by xray, right near the spot where they yanked out the big stomach tube a few hours before sending him home.

He is exhausted, has no appetite, tired, but seems better than last night. The nose tube suction has a really helpful effect on removing everything at the top of his digestion system. It's like having a clogged drain and nothing will go past the clog, but they don't know what the clog is or where it is.

Still, my guess is they will take a laparoscopic look in there to see if they can find the cause/source.

He's being kind of naughty right now, though. They told him if he walks more, he might get home sooner. So he took that to mean he should go out and walk really fast, a really long way, until his side started killing him.

I said,"Bill, what are you doing?"

He says, "I figure it's like situps. If you do it till it hurts, it makes you better."

I made a noise of Great Exasperation and explained that situps and an intestinal blockage are not comparable. He wouldn't listen.

So, I'm still kind of exasperated. Also, a doctor asked him how he is, and he said, "I feel great."

I said, "Why did you say that? It's not true." [Insert: sound of Beth sighing dramatically...again]I suspect (he denies) that he thinks this kind of answer will get him home faster.

Do you see the lack of logic I'm dealing with on this point?

If he "tricks" them into letting him out early and it happens again, I don't know if I could go through all that again, and come over here again. The last 24 hours was something I hope never to repeat!

Maybe Emma can scorn some sense into him when she gets here. I'm out of ideas!

No, wait. I DO have an idea.

Maybe if I take away his cowboy outfit till he starts behaving in a medically responsible manner...now there's a plan.

Back to Duke We Go

I'm calmer, rested this morning.

Thought I'd leave that last post in its unedited form so that, in case you ever started thinking I was cool-headed in a crisis, that post alone can set you straight.

I called Duke early this am. Bill is in the Er, where he was taken by ambulance at 3 am from Boone. His blockage is not improving at all. They are admitting him and he will be there through the night just for starters, and that's all the nurse told me, except she said not to drive like a maniac, because he's okay with them, not in like critical condition, etc (my interpretation of her calming words.)

So I'm leaving in about a half hour and will check into a different hotel that has a working elevator. (In my all-night insomnia, I counted out that I had done 900 stairs yesterday with my luggage due to the broken elevator and the absent assistant they promised me. It was 50 stairs down to the lobby, and I had 9 pieces (mine and Bill's both) and had to go up and down 50 stairs (100 actual step actions) for each piece of luggage. My kneecaps are missing and my calf muscles are speaking French.)

Wow, see that digression? I guess Im still fried.

So Emma will meet me at the hospital tonight, and we don't know anything else.

I will have laptop and found the plug, and found phone plug, so will be equipped.

Prayers.

Thank you all so much.

((((((((((((((((halp!))))))))))))))))))))

most fried post ever

ive been up all night, cant think straight! Local medical center just called me at home; he is in ambulance on way to Duke. They said his pain was getting out of control. Everyone is getting him off opiates in case that's contributing. His daughter gets here Friday night. I don't know what to do, my decision-making power has left me, it's all too much, I can't think! What should I do? Go to Duke right now? With no sleep, could I drive safely? My dogs, my dear neighbor will help with, others can help. No one said if he gets surgery. Could this be fatal? Don't I need to get there right now? He doesn't have cell phone. My charger is packed, can't find charger. Oh, I'm in way over my head. I wish I knew what to do, but if I get five different opinions, I still won't know what to do. I guess I should say, "Beth, he is in a medical place, they will take care of him, so do your best to get there, but dont' be hysterical, because YOU'RE not the one that has to do the surgery, so you don't have to be there by daybreak."

Okay, I dont know if I will have laptop with me if I go. I sure plan to. Don't know where anything is, all jammed in suitcases. Okay, will try to sleep for an hour, then do something, I don't know what.

Thank you for caring!!!!! Don't call cell if you can help it, because I can't find the cord, and I'm losing power.

Love!

Thursday, April 1, 2010

Get Ready to NOT Believe This!

Bill is back in the hospital.

And I don't even know where!

This has to be brief, because this one was of the hardest days I have ever lived through, and my brain is fried. I promise more details tomorrow.

Basically, we drove home. Halfway home, Bill started having worse and worse pain in his abdomen, near the area where they had pulled out his stomach tube last night at 2 am.

They then released him from the hospital this morning WITHOUT HIS HAVING EATEN SOLID FOOD! Yeah. He went from an IV bag to the CAR!
Is that even LEGAL?

So halfway home, he starts having these increasingly bad abdominal pains.

Skipping all the details for now, we get home after a long drive (that issue didn't happen because he asked for a pain pill before he left Duke, and since it was an opiate, it had the identical effect of Imodium, which they refused to give us. YOU figure it out, because I can't!)

So thank GOD we didn't have that all the way home. It was a miracle. Really.

So a half hour after we get home and greet our happy pups, a home health nurse comes by. She is about to admit Bill into home health care, but she looks at him, and he looks really bad--yellow again, enlarged abdomen, hard abdomen, and in excruciating pain like, he says, he hadn't experienced in all the time in the hospital!

She says, he has to go to the ER right now. Something is really wrong.

So I said I'd drive him. She says, No! Im calling an ambulance.

Are you KIDDING ME? Am I dreaming this?

Next thing I know, a bunch of EMTs and a stretcher are in my house, Bill is yelling in agony, sweating, pale, horrible situation, and they take him to Watauga Medical Center in Boone, to the ER. I follow by car.

By 9:30 pm, they found out he has a whopping intestinal obstruction and apparently should NEVER have been released from the hospital!?

Next thing I know, they talk to Duke and the last thing I heard was that they were about 100 percent sure they were taking him by AMBULANCE all the way back to Duke!

They took xrays and saw the blockage. The doctor said, "It's worse than an ileus."

Oh, STOP!

So they give him morphine for his pain, and install a stomach pump down his nose to attempt to suction the contents of his stomach and small intestines out of his nose.

OF COURSE, THIS IS ALL A DREAM, RIGHT?

THEN they announce that something has gone wrong with his kidneys and they are malfunctioning, have dropped a lot since that same morning (I guess that was today, THIS morning--seems like a week ago!).

So he is either staying at Watauga and if the nose tube resolves it, then he can come home at some point, but the doctor said they don't want to start on a complicated case like his when they don't even have his records, so they'd prefer to send him back to Duke, but I am not allowed to drive him.

So at this moment, I am home, completely exhausted. Bill's daughter Emma gets here tomorrow (planned long ago, and excellently timed, as it turns out!) and on Saturday, I guess she and I will go back to Duke if he is there.

The blessing would be that he doesn't have to go back, and he gets fixed in Boone, and can just come home.

I have all the phones in the house beside my bed, and will post again tomorrow when I know what is going on.

Wow.

Unreal.

And did I mention that this is unreal?

Riding Home

This is the last post from Durham (I hope!). We expect to be driving home by midday.

You'd think we'd be experiencing pure bliss. But we are both very concerned about one particular aspect of how this three-hour ride is going to work.

I'll delicately state that we have some issues with Bill having a ten-second warning before he needs to get to a restroom, and that this happens about every half hour. And by "ten second warning" I mean "nine second warning". I simply cannot imagine how this trip is going to work, and neither can he.

He can't stand up straight. He can't walk without a walker. He can't walk alone. I can't go into men's restrooms and help him. Nine seconds of warning--even ten seconds if we're lucky--isn't enough time to find an exit.

The doctors refused to give us Imodium of any kind.

And on top of all that, the doctor is sending him home WITHOUT restitching his two-inch gap in his surgical incision, so can you imagine the cleanliness issues with THAT?

In gas station bathrooms?

The only solution I can see, and he'll never do it, and probably shouldn't, would be to give him a skirt of mine to wear so we can just pull off the highway during the nine-second warning, hike up the skirt quickly and let 'er rip on the side of the road.

Not in twenty million years will he ever agree to this plan.

Oh, one side point: the elevator broke in my hotel, expected to be out for a week. All my luggage and Bill's, down three flights of stairs by myself. What a day this is going to be.

Well, off we go. Lord, help us.

And thank you for every prayer, every thought, every minute of your life you donated to Bill's recovery while we were here. I know that we will never know how much some of you have prayed. We are both humbled, and all we can say is THANK YOU, and hope that those two words are some kind of tiny start in expressing our gratefulness and amazement.

Most of all, thank you, God.