whirlwind wednesday

Busy day. Lots accomplished.  Good insurance people are priceless.

Hospice nurse came back to the house for the first official visit.  Mama was there with John so I could work.  Answered a lot of questions about insurance.  My naivete about Hospice being free to the patient comes from lack of experience with this situation.  John's insurance will cover 38 days of Hospice visits, so we're going to hold them in reserve until really needed.  They're very helpful and willing to work with you however they can.  John needs a better bandage to cover the incision and they are going to find something.  I love the term 'tuck-in nurse'.  Sounds so comfy cozy.  She calls at night to see if you need anything.  There's also his RN who is available for questions or services. 
John was 'tickled pink' that the admissions nurse came back again today and gave us his patient number and answered more questions.  Gives him great peace of mind. 
The tumor doesn't seem to have grown any today and hasn't leaked in two days.  yay

I've been smiling all afternoon and evening.  Went back to Wildwood choir tonight for rehearsal and party.  Teresa, one of the best choir directors I've ever had, has resigned her full-time position there, and the choir gave her a beautiful music box and party to thank her for her years there.  It was great to see my church choir family again and to SING with them.  I wanted to sit under Teresa one more time, and we practiced the Hallelujah Chorus.  Doesn't get much better.  I didn't realize how much I missed everybody until I got around them again.  It was like no time had passed.  My chair next to Becky was still warm.

Tomorrow is first grade's Polar Express day!  We're wearing pajamas, drinking hot chocolate, and eating cookies.   I'm wearing my pink and green camo footie pj's John gave me for Christmas last year.  It's a fun day.  Today, Santa walked past our room on his way to Kdg for their parties.  The debate began......is he real or not.  As always, there are strong opinions on both sides.  But in the end, I think they all hope he's real.

mixed up monday

It was a weird day for John.  When I called him at almost 2, he had just gotten up, he said.  Then I remembered I made coffee for him before I left.  Didn't worry too much because it cuts itself off after a while.  Seems he got up as usual, put together my kids' Christmas goodie bags for me, washed dishes, was worn out, laid down, had a sinus headache, took a pain pill, and it knocked him out.  When I got home around 5, he was still in bed.  Got up, ate, talked a lot, went back to bed.  He's up now at 10:30.  We'll see how long it lasts. 
The incision is dripping some.  Has a 'pocket' of fluid at the bottom of it.  I'll call and tell them tomorrow.
Well, that was quick.  Already back in bed.

I'm getting together info for a prospective buyer of the business.  Man I hope it happens, and quick.  It would be a huge weight off John.

Really cold.  Tonight should be the coldest night, then warm up some.  My class Happy New Year party is tomorrow and I'll probably wear a turtleneck under my sequins! 

more liquidating

Today as I dressed for church, I put on the beautiful poinsettia pin John gave me a few years ago.  Another wonderful gift from a wonderful man.  We were leaving a department store one day and we passed a stand of pins.  This one caught my eye; beige/brown swirled cloisonne on the petals, burnt orange jewels in the center, gold backing.  I only mentioned in passing how much I liked it.  Was so surprised when I opened the box that Christmas.  He remembered the story, and the pin when I had it on today.  John said he went back the next day to get the pin.  He was glad it was still there.

Yesterday I picked up a catalog of carpet cleaning a friend had borrowed.  John has tried to inventory his equipment but needed pictures because he can't remember the names of items.  He went thru the catalog yesterday and circled what he has.  Today we wrote it all down with current prices, for prospective buyers.  Really need the business to sell before the end of the year. 

Enjoyed the Christmas musical at church this morning.  Have lots of activities this week; 3 parties on different nights, and will probably go to only one.  John sits home all day and I just can't go out and leave him alone at night.  He can't take the noise, movement, and commotion of groups, so he won't go with me.  It's ok.  I'll have other parties later.  I want to be with him right now. 

Last week of school before break.  Can't believe it's already here.  It's been a fast first semester.  The good ones go too fast.

casteerdia

Reminds me of stuppeeditey.  John's made-up words. 
Today was a weird day.  Mama and I went shopping this morning, and when we got home, John was lathargic and feeble acting.  We walked uptown, came home and he rested.  Then we went to Burger King.  While we were there, he asked me what gifts I remembered him giving me over the years.  Talk about putting a girl in the hot seat.  But he gives great gifts, and Sharon and I had just had this conversation the other day, so I reminded him of the footie/camo pajamas, turquoise bracelet, Yankee jersey.  He remembered a couple of necklaces, and th perfume 'he' got from Victoria's Secret.....Sharon really picked up the items because he won't set foot in that store.  He laughs when he talks about it.  He didn't want any help with the bracelet and was proud of what he got.  And it WAS an impressive gift.  We talked about a few other things, and places we'd been.  I wanted to come home and look thru pictures for more memories, so we did.

Later, John perked up.  He said his head had been hurting earlier and he knew he was acting and feeling weird.  We watched Andy Griffith at 7:00.  Had to mute the sound because John kept 'hearing' them talk about catastrophes.  He was rational enough to know they weren't but asked me just to make sure. 

His friend Dave called from Atlanta, and John told him bye and how much he has enjoyed knowing him.  It was bittersweet.  Quite a few of his friends have called lately and it's meant a lot to John.  Don't think he knows I've emailed many of them with the latest update.  John's determined to be 'gone' by the new year, and after watching him today, when he gives up, it will be over. 

I'm craving noise.  John likes it quiet, and as long as we've been married, he can't handle extraneous sounds like background radio/tv/movies.  I like something quietly going in the background usually, but can do silent also.  But lately, there is nothing in the background so my head is empty.  [haha  bad choice of wording]
chicken

curiouser and curiouser

It just gets more curiouser and curiouser.  The bulge under the incision

on John's head is the tumor protruding.  They took out the area of skull

where they did surgery, so instead of growing "in" the tumor is growing

"out" and pressing against the skin.

 

He isn't in pain unless you press the skin in that area. [it looks like half

a walnut under the skin]  His prognosis hasn't changed....6 months,

and this weird growing pattern has actually bought him a little more

time since it's not totally inside his brain wreaking havoc.

 

There will be no more treatments [chemo, radiation; etc] so it's just a

waiting game now.  He went for an hour and a half walk when we got

home today, ate, went to bed.  Can't imagine what it's like to be him

right now.  Although he's almost excited to meet God face to face and

be able to talk and read and teach in heaven.  Can't add anything to that.

chilly willy wednesday

Ready for bed so this will be short.  John had a ct scan done today of the bulge under the incision.  We'll go tomorrow to get the results. 
tumor vs. infection

Dr. chemo doubled the steroid Monday, and today, John has been wound up, and this evening, hearing bombs.  Not sure if he's hearing actual explosions or the word 'bomb' in conversations.  He watched the news with his parents, then when a talk show came on, he thought they were still talking about the same things on the news; internet, bombs, bombs.  everything was bombs
When he realized we weren't being bombed, he calmed down some.  He went to the bedroom and laid down until his parents went to bed, then came to the living room where I am.  Kept the tv muted and now he's napping.

A limb/bush fell on the utility light out back and broke the shade/cover for it.  The town guys came today and replaced it and cut back the limbs.  Too bad Daddy didn't get to do it with his handy dandy chainsaw on a stick.

Will be going to town hall to reserve cemetary plots next week. 
exciting,huh?

Snuck around this afternoon and picked up a couple of Christmas gifts.  Speaking of Christmas, or chicken, as it's known in my classroom......the day the calendar flipped to December, my kids went nuts.  All they knew about December was Christmas, so we made a rule.  No one could say the C word.  Then they suddenly figured out Christmas doesn't start with c-, but c-h.  So now they can spell....
Since the beginning of school, some of them will randomly blurt out 'chicken' and the rest will snicker [still haven't figured that one out yet].
When I say "C-h"-something or other, meaning Christmas, they say "chicken day".  Never a dull moment in camp cogdill.  Yesterday I told them I was the only one who could say Christmas because I was reading stories with that word.  They still say chicken and laugh; I say Christmas.  Next week I'll let them start saying Christmas, too.
I'm sure the kids have told their parents they aren't allowed to say Christmas, and the parents think their child isn't allowed to say the word 'Christmas' because it isn't PC.  Well, all I have to say to that is....
chicken.

It's been a fun, exhausting, emotional, busy week with Tim and Jennifer and the kids here, along with John's parents.  Last night, we had a delicious steak dinner at Jennifer's mom's, and reality
finally hit me in the face when it came time to go home.  Tim's crew was leaving for Idaho the next morning, and I realized Tim will probably never see John again. 
The realization dangled around as we took family pictures and silently overtook us all when we started giving good-bye hugs.
Jennifer's mom, Georgena, had her back to us doing dishes when we came in to tell her thank you again and give Jennifer her hugs.  When Georgena turned around, her eyes were filled with huge tears.  That's when we all lost it.  John, of course, was the strong one.  He laughed it off saying we were girlie girls or something like that.
Tim met us at the car and couldn't talk.  They shared "I love you's" and hugs.  A couple of people stood on the porch and watched from a safe distance. 
It was so surreal.  That's the only word I can call it.   surreal

John's parents took him to the surgeon today because of a walnut sized bulge under the incision.  They'll do a ct scan tomorrow and we'll get the results Thursday.  The debate is whether or not it's tumor coming out or infection.  Good grief. 

I was telling my massage therapist I about a discussion I had with myself.  "Which is worse, losing a spouse to divorce or death?"  My decision was divorce because it is so full of hate and meanness, stress and fear of a different kind, and going through this process of John's dying is so full of love and laughter, it feels totally different than divorce.  And I guess I mean 'worse' in a terrible way, not necessarily 'harder' or 'saddest'.

John has a hard time remembering the kids' names, so he's numbered them.  #3, West, asked me, "Will you still live in your house when Uncle Dennis is dead?"  I told him I would.  Jennifer said he's full of questions, so I told him I'd answer anything he asks.  He didn't have anymore questions while they were here, but he did give lots of hugs.

We've gotten paperwork signed and witnessed for Hospice, the funeral home, anatomical board, will, poa, dnr, and a bunch more.  John's family has been a big help hauling him around last week and this.  He said today when he handed me all the papers, "I'm ready to go now."
And he is.  I'm not ready for him to go, tho.