
Saturday, March 31, 2012
Fairy Reminder

Friday, March 30, 2012
OMG I'm freaking weary.......
I agree with her--I am.
I goad. I demand. I harass.
Yes, she gets to tell the truth.
Yes, she was having difficulties prior to surgery with eating right.
Yes, she's dropped 60 some pounds in the last 6 months. And yes, I do think it's complicating things. So, yes thank you, I'd like to trade off those ten cases (240 cans) of Gly-whateveritscalled for 10 cases of the higher caloric 'stuff'. Okay--it's scripted and you can't take 'em back, we'll donate 'em so those who don't have insurance can benefit.....just bring me the higher caloric stuff, please and thank you. Ten CASES.....omg.....
7 cans a day is too much volume.......she'd spend her time with the tube feedings and have little time for living life! So--no, no break for her when she's toted off for the physician's appointment and he breaks it to her that it wasn't in the nodes HOWEVER.......it's the aggressive type and he wants her to follow up the surgery with radiation. Daily.....for six weeks........which she'll start in 4-6 weeks. Yes, she knew this was a probability prior to surgery. Yes, she was so focused on the loss of a tongue that she put that bit on the back part of the brain....so yes, it's been a 'lemme wrap my head around THAT one' moment in time.
And yes, dearheart.......it does get different. Ain't sayin' it gets 'better', but it does get different.
I'm freaking weary.
But I can't be more weary than she is.
She's up, moving, tending to herself independently--I can't remain here forever and we need to be sure she's where she needs to be to tend to herself. Life goes on, and while his employer has been wonderful, work is required for him.
It's rather comical to push him out of the house in the morning and assure him that she'll be fine while he goes to work. But I was a hated woman when I told him that I'd tag along to the grocery store the other day--he wanted to call the neighbor in to sit with her.
Ummmmmmm.....nope. We have the emergency plan set--she'll use it....and yes, I know it's only been 9 days since the surgery, two since she got home. NO rest for the one with the good genes. And yes, we're going to get a cuppa coffee AFTER we get groceries!
She survived. He didn't kill me.....so it's all good.
I'm leaving in 5 days.
She needs to be confident and he does, too.
But I gotta say, I'm freaking tired.......weary to the bone.
The good news is the house no longer looks like a hospital zone, as evidenced by the area I claimed for her meal stuff. And I have him thinking a bit differently than he was, which is good too. And she's doing awesome!
Up 75% of the day (yes, I nag), getting her own meals, tending to her own medical 'stuff' as needed. And the nurses that come to the home.....very awesome!
The good news is the pathology report showed no tumors in the nodes.
The bad news is she's going to be doing radiation sooner than she wants/thought....and she heard from the doctor that they're going to have a long relationship--that she's stuck with him for at least five years.
And I really, really, really like him.........
He didn't give her a choice on the radiation, he just said he was setting up the consultation and that was that.
LOL
Bit like me, I guess.
I just say how it's going to be and expect her to hop to it and DO it.
Yup.....her speech is pretty garbled and she's harder than hell to understand most times.
TFTD

Thursday, March 29, 2012
Today's Fairy Thought
Wednesday, March 28, 2012
Fairy Diddy

Tuesday, March 27, 2012
Reading for the Day

Monday, March 26, 2012
Today's Reading

Sunday, March 25, 2012
Sleep.....
I have my own room here in California. It's about to become hers...at least for a chunk of time while she's healing. I'm thinkin' ....waterbed....notsomuch! I've got a chunk of time, probably 24 hours, before they decide to kick her out of the hospital. Good grief they do things in rapid succession nowadays. Wow.....
Trache was capped, trache was removed.
The cast over the arm graft will get downsized and the drainage tubes will be gone.
Is she 'better'? Remarkably so....less than a week ago they sliced and diced her and today she's making the rounds down hallways, sitting in the chair and enjoying an occasional harassing moment with her favorite nurses. No, she's not taking food orally. And no, she's not understandable. But lemme tell you how wonderful it was to hear her squeak for the first time after surgery!!
O M G !!!! I thought I was gonna cry.
So--they're talking about kicking her out with in-home nursing. And I'm sticking around another week so it's good timing.
Bit tired after a fitful night last night. Pretty normal after they'd capped the trache and given her instructions on how to remove the cap IF there was an 'epic fail' and she ceased to stop being able to breathe through her nose/mouth. Even *I* wasn't planning on a decent nights sleep, given that information. But we made it 24 hours, capped and that sucker is GONE!
So I'm home--still without 'catch up' rest yet....dealing in loose ends around the house and getting stuff readied should they decide to send her home.
She's a bit panicked, but she's operating out of what was true 'yesterday'. And that's not true today.....and what's true today, won't be true tomorrow. Every day she makes more progress and every day she gets further in front of what was just a few short days ago.
I'm amazed.
I can't say enough about all the medical staff she's had helping her through this.
They're all rock stars......
I could go on about the icky moments--however....
I have things to do!
Today's a new day.
She's making noises and taking feedings through the g-tube.
And it's good.
Fairy Dust
Saturday, March 24, 2012
New Day
Sun's up--somewhere under that gray mass.
It's a new day.
A bit of uninterrupted sleep was extremely helpful.
The shower didn't hurt! LOL
I'm packed for the sleep over.
The nurses rock! And she's getting good care. But the ability to talk what it is that she needs, is frustrating and scary to her. Having'we who know her' around helps her feel safer even if we're not qualified nurses. (I'm learnin' a whole lot though! I do know how to suction a trache and how to suction her very swollen mouth....poor thing....)
So it's back to the surgical care unit I go. BIL will go home this afternoon for his turn at 'home rest'........earlier if I can push him out. He's done an awesome job. AWESOME......even when he thought he couldn't do something, he did it and shook like a leaf afterwards.
He sooooooooo loves the sister.
And she's moody, which is to be expected. But she has rock star nurses and physicians. Only a couple that I had to get in line. LOL For the most part, they've been wonderful. I favor the vocal, goading ones--mostly cuz I tell her I know it's not pleasant.....but suck it up, get her arse up cuz we're going down the hall to the beach. (we can see the ocean from the window!!) I've got seashells I'm lugging with me today to put on the sill cuz.......
Right.
Puppies are fed.
Laundry is done.
House is vacuumed.
Sea shells are in the bag with the change of clothing!
Ready, set.......go!
Today's Reminder from the Reading Fairy

Friday, March 23, 2012
Under the ancients.....
That's where I head after moments like today. Usually it's with a good cuppa coffee from the cafeteria. OMG they make the best coffee! And if you hit it right at closing time you can get the end of the last HUGE pot of coffee they brew.......and the guy at the counter smiles at you and says "For you...free!" How could you not love that cuppa coffee!!
So, when they 'downsize' the size of the trache (which is a horrid enough of a process) and decide to feed the sister through the g-tube hours after that........which results in a terror filled vomitting session WHILE trying to use the bathroom for the second time in days........it results in clearing up vomit, trying to be encouraging and sympathetic while trying not to gag or get tearful cuz that had to be painful on many, MANY levels..... Whaddaya do.....at times like that, time with the ancients is something that almost seems 'required'.
Sometimes it's in daylight.
Sometimes its in the dark of night with total disregard to the advice of others.
Sometimes it's in midafternoon with a bit of sun filtering through.
Time under the ancients has been a very helpful, calming thing.
It clears my head.
It opens my heart. (I haven't killed anyone yet!)
It centers me in what's true.
And it gives me that bit of time to just walk away from the situation in front of me, breathe.....and remember it won't always be like this.
It won't always be like this.
Some days it will actually be ickier!
Hold on........somedays have been ickier already.....
I meant....somedays will actually be BETTER!
Ohmygosh I sooooooooooo need a shower and a decent night's sleep!
Fairy Reading for Today

Thursday, March 22, 2012
Fairy Thought

Wednesday, March 21, 2012
Life on the 8th floor
11 hours of surgery.
3 hours in recovery.
And now we're on the surgical care unit.
It's with deep gratitude that the surgery was successful. Not only did they get, what they believe, was a 'clean' removal of the tumors in the tongue--the 'flap graft' was successful and the doctors believe she has a chance to relearn speech and eating, in time. We're waiting on biopsy results from the lymph nodes...and there's other 'stuff' that they got to do, all of which they're considering 'successful' and necessary.
I'd love to say it's been an easy haul since the surgery--it has not. But we're all a lot stronger than we give ourselves credit and she's got some 'stubborn' genes mixed in with those nice ones. We've living at the hospital, at least momentarily.
I'm home to shower, collect some things, get rid of a stupid headache and toss some laundry in the machine while I hope for the stupid headache to go away--or at least for the vomiting to stop. (typical migraine crud--HORRID timing, lemme just say that much!)
So--good news for this piece of the journey, even though it's continuing to be a struggle.
Nothing that we can't and won't handle as we wade through all this to get to where we know we can be with perseverance.
The view from the window...awesome!
The results of everyones hard work and efforts to date, equally awesome.
We ain't done yet--but we have a heck of a good start.
Today's Thought

Tuesday, March 20, 2012
Fairy Dust

Monday, March 19, 2012
TFTD

Sunday, March 18, 2012
The view in the wait
We stopped for a view--but with 50mph winds, surf was insane and going on to the beach...even more insane. Especially given it's a whopping 40 degrees. We stayed in the truck and I didn't think to snap a photo until we were headed back home. It's not that we didn't want beach time.....
She can't do the walk to the beach now.....even in perfect weather....
Mind you, I'm told it's in the high 70's in Iowa.
*sigh*
It's all good. I'm right where I'm suppose to be.
4:45am check in--surgery is at 7:30am.
We made mass and we got to meet with her priest and she was annointed, so she feels more prepared, more centered.
Still, the past few days have become more difficult.
I expected that.
I've come to know that.
It's all 'normal' I tell her.
And it is.
I just didn't want this 'normal' for her.
8-14 hours in surgery.
I'm hopeful it'll go without a hitch.
But that won't stop me from toting along the better angels--she needs their company.
And prayers.
So thank you, everyone....in advance.
Today's Reading

Saturday, March 17, 2012
Reading from the Reading Fairy

Friday, March 16, 2012
Not the same
Yes, I'm whining.....
What's the point in having pressed coffee if you get both cups to yourself and there's no one to steal from who really WANTS that other cup?!
*sigh*
NOT that I'm complaining about getting the two cups of pressed coffee!
.....just complaining that I don't get to STEAL it, dangitall.........
k.....that's just weird.....LOL
Fairy Dust

Thursday, March 15, 2012
Happy Buddah
In between visits to physicians and the like--there's weeding and trimming and massacring stuff. It's good to stay busy.
But handing me clippers and loppers and gloves is a verrrrrry bad plan.
She's just too gracious--even though I've killed her awesome geraniums that she's had for 9 years, she tells me that it's 'okay'....'time to plant different--the roots were going to damage the wall'.
k....Now a part of that could be true--I was trying to trim back poodle poofs.
Ya know...very long branch/stem thingy with a poof of flowers wayyyy at the end?
Yeah--poodle poofs.
Poodle poof geraniums...gone bye-bye!!!
No, that wasn't deliberate. But it was the end result.
Yes, I kill things.
And yes.......we'll be planting a Hope Garden in its place.
The neighbors were kindly and lent me their garden waste bins. (note that's plural--4 bins worth of ucky stuff just from the side flowerbeds....omg are there flowerbeds....)
They were collected yesterday. And that means........four empty bins to fill!
So yesterday I decided to disect the BACK patio flowerbeds!
Amazingly, I pulled off the first one.
Trimmed, weeded, cleared out!!
NO casualties even!!
And it LOOKS good.
Miracles DO happen.
But the one on the side?
Ummm.....started it!
Pulled out all the collected ocean rocks, weeded the mess, raked up the soil, slapped down some newspaper and dumped the rocks in place....and plonked down Buddah.
Buddah is 'happy' she says.
And the sister's smilin'(--in her own way because it hurts her to smile and laugh and talk....and eat...)
Of course, it's 'perfect' and she 'loves it'.
*rolling eyes*
Yeahyeahyeah....she's the one with the 'nice' genes.
Of course she loves it.
But there are two more beds in the back patio area.
And there are five in the front of the house--the ones that house her favorite roses.
And I mean her favorite roses.
The ones her honey bought for her that she's nurtured and loved for years.
:-/
If I can kill 9 year old geraniums, think what I can do to 15 year old rose bushes!
.
.
.
.
Oh boy.........
So....
I just know the decision was to not do the surgical biopsy which woulda delayed the other surgery that needs to happen.
So, monitor the nodes--another PET in 3 months--and keep moving.
We're on for surgery this upcoming Monday.
I've added a week to my stay--turning this adventure into nearly a month long one.
We've talked Advanced Care Directive, we've talked how we're going to help her communicate and HAVE a life with no ability to talk. And we're setting some things in motion today, setting some dates to attend some functions with friends that force her out and about.
We're having cards made to present to people she will get to do business with, making it clear she's not deaf-but that she cannot speak(can ya hear the people talking loudly!...oy....)--and we're setting up alternative communications so she really can take care of business in another way. She needs to maintain her independence. It's as simple as that.
It's those little things that make it real, I guess.
Tough stuff to move into.
But truth is, she won't be speaking for some time--if ever.
She will have a feeding tube--so yes, that's why we're buying new clothing with easy access.
And yes she will be proactive about some of this stuff--she needs to move into some of those adjustments now so she can live in the life she's saving.
*sigh*
Never a boring moment with me around, I tell ya........
Fairy Reading for Today

Wednesday, March 14, 2012
Fairy Reading for Today

Tuesday, March 13, 2012
Fairy Reminder

Monday, March 12, 2012
One of many
If I ever question, which I do not, the power of those whose paths we cross--there's another fine example.
There's a recipe box sitting on the top of the antique sewing machine--filled with decorated cards from online friends who send prayers and well wishes and positive thoughts. She posts on a board and 'seems' to impress people with her loving ways. Go figure that.....but she IS the one with all the 'nice' genes.
I got to meet one of those gals yesterday.
She's spunky and outgoing and fun-- and clearly cares about the sister, hugely.
There's no doubt about the love she's surrounded by.
If she bothers to doubt that, I'll just hug her and hand her the box.
And the album.
And the books.....and cards....
It's good to have things you can touch and see and hold on to.
But it's the unseeing, untouchable but abundant love that will lift her up in all this.
And there IS an abundance......
I'm so glad.
Hugely so.
Reminder for the Day

Sunday, March 11, 2012
And today....
Yes, it's been lovely.
Yep, a whole lot of trimming and weeding has been going on. She just hasn't been up to it.
Yes, it's difficult--but she's doing okay, really. Best she can do at this moment in time.
He's doing okay--actually he's stepped up to the task at hand. I was worried about him being able to weather this and he's gotten into the "I'll get that done if it kills me." mode, which is serving him well. And her.
And I'm gardening.
And cooking (yes, I know I don't do that well.....).
She's not ate anything solid in 7 weeks.
It'll be a very long time before/IF that happens again.
We're working out the details, talking about the hard stuff--mostly me doing the talking because it's too painful for her to do it.
And we bought her some clothes that fit. That'll continue to fit and work well with the feeding tube she'll have following the surgery.
Yeah--she's dropped a whole lot of weight.....she was trying to before she got diagnosed.
She looked gorgeous dressed up for church this morning--and told me she felt pretty, something's that been fleeting for her.
And tomorrow, it's the biopsy of the lungs.
The good news is this is a very slow growing cancer--cuz it's been seven weeks with nothing done to prevent the growth/spread.
*sigh*
But we're closer. And she remains in decent spirits.
I just don't know how the body will endure.......
Today's Fairy Thought

Saturday, March 10, 2012
Reading for the Day

Friday, March 09, 2012
I'm good with that....
Thought For The Day

Thursday, March 08, 2012
And so we wait...
Reading for the Day

Wednesday, March 07, 2012
Today's Reading

Tuesday, March 06, 2012
I'm anxious
Denial or reality--not enough time.
Fairy Reminder

Monday, March 05, 2012
About that salt jazz........

Yeah well.......
Today's Fairy Thought




















