Monday, January 17, 2011

the games of life

What do you get when you cross charades with pictionary, mapquest, what's my line, and the internet???  Two hours with John, trying to figure out the name of a store.  The clues were:  internet; national store but only one site locally; we've been there a thousand times: he'd go to one side and I'd go to my pictures;  near Governor's Square; had other small stores next to it.  I finally called Sharon and gave her the clues.  At one point, John kept saying Tennessee Street, but Sharon and I figured that was probably not right.  I was pulling up store logos online to eliminate things on the parkway or either mall.  We eliminated all food-related places, Barnes & Noble, K-Mart, the party store, Tallahassee Mall.  Sharon called back about half an hour later with Best Buy.  BINGO!!!!!!!!!!!  ding, ding, ding.  We have a winner!!!  John recognized the name when I said it.  Sharon was cracking up on the other end...."Thank you very much!" he said.  I pulled up their website and he confirmed BEST BUY was the store.  And all the clues fit perfectly.  Of course......
He wants me to get a new computer and wanted us to look at them online.  He wanted to enjoy me looking for one.  At Best Buy, he would always look at cameras and computers and I would go find a dvd to buy [why he said I went to my pictures].

The beginning of our day hadn't started quite so well.  John's incision had bled in the night; that one darn spot that bled a couple of days ago.  He wanted me to call the Hospice nurse, so I knew he was concerned.  I left a msg for her, then canceled my dentist appt for today, and called Mama to not come sit with John for my appt.   We changed his bandage after b'fast and it hadn't bled anymore and didn't even when I took the bandage off.  The nurse told he to use 2 bandages or a bandage with gauze on the outside, along with the headband he uses to hold it all on. 

While I talked to the nurse, he called his friend, Dave, in Atlanta.  He is a fellow carpet cleaner and longtime friend.  Dave and his wife are coming here in early March [John said if he's already gone, to come see me], and to Glacier this summer!  Yet another couple I've influenced into going there.  Maybe I can be there when they are.   Talking with Dave energized John.  He had a great morning once he ate and took his regular meds.  We didn't get up until around 9, which is too late for him.  Didn't realize the time; didn't wake up early enough.

Sharon and Marshall came by for a quick visit.  Made the boy chocolate chip cookies and then they were off to baseball tryouts.  He made a Babe Ruth team!!  Don't know which one yet.  Would be funny if it were the Yankees.  Not sure if BR uses major league team names or not. 

After supper, John laid down, slept a bit, then woke up restless.  He tried to tell me something he said he's told me twice before.  Couldn't figure out if it was about the PO Box, medicine, insurance, or Hospice.  He assured me it wasn't me, it's his lack of communication that frustrates him.  He got up and walked around the house some then went to sleep.  Before we ate, he prayed.  He thanked God for all he's done for us, thanked him that we can know him, and asked God to look out for me.  We both lost it.   John is incredibly thoughtful and sweet. 

Found the song to put to my video of pictures of us:  "Mrs. Darcy" from 'Pride and Prejudice".  This summer, John watched the movie with me, [or I should say suffered thru it with me...not a guy flick],  and I wasn't really sure how much he followed it.  At the end when Mr. Darcy asks what he should call Lizzie and she says Mrs. Darcy only when he's deliriously happy,  John kissed me and said, "Mrs. Cogdill.  Mrs. Cogdill."  He totally 'got' that part!  The song doesn't really fit a guy video, but it's perfect to me. 

Sunday, January 16, 2011

steps

What is it....5 steps you go thru when someone dies?
Guess the denial has been til now.  Not so much actual
denial but maybe not realization.  John has been so
'normal' until now.  Now I'm getting angry.  Why does
this have to happen?  to him?  It's not fair.  I don't
want him to go.  Why now? 

I hope I get thru this stage quickly because I don't
like it.  Nor do I want to spend energy being mad. 

trending down

Saturday was a much better day after all the trauma Friday.  John has less ability with his right side, and lays his hand in his plate and doesn't even know it.  He has mentioned for a while now that he can't "hear" me on that side, and I take it to mean he doesn't have much feeling there.  He almost fell over a couple of times while walking, too.

Today, it's been about the same.  He doesn't understand why he can't go on and die since he "can't do anything."  He lays around more out of boredom, listens to his Bible on cd, and watches tv some. 
Late this afternoon, a couple from church brought over homemade pork loin bbq.  They are the same couple who brought tons of goodies at Christmas.

This is what we need from Hospice:  someone to teach John how to get up from sitting since his side is weak; how to use utensils with his left hand, or strategies with other types of utensils/bowls/plates; how to get up if he falls.  I also need to know these things, and didn't realize how quickly we'd need this info.  I will have to call the nurse and see if they have pt services.  You don't know that you need to ask for these things until you're flailing in the thick of it.

Dentist appointment tomorrow.  Mama is coming to stay with John.  When I told him the other day about my appt, he said he figured Mama would come.
It's also MLK,Jr holiday tomorrow.  The local parade goes right in front of our house.  Maybe I'll be able to get John to watch it out the window if it's too cool to sit out.  I usually sit on the front porch and watch.

John has always weighed himself at Publix and when this whole ordeal began, he weighed about 235.  At the doctor in October, 209; Friday 201.  He still has his little stomach pooch, but his legs are thinner than I've ever seen.  He looks great on the whole.

There have been a few moments lately when shear panic have hit me:  very soon, John won't be here anymore.  It's surreal.  very surreal
I don't like it at all.  Told him again. 
The Golden Globes are on tonight and I told him several days ago I wanted to see them.  My carnal indulgence.  John had a chill about 15 minutes before the program was to start.  He drank water with his medication and it made him cold.  I laid in the bed with him while he warmed up, and he told me not to forget my program.  I wanted to stay in bed with him but he said I needed things to do, it was ok.  It was like he was saying your life is going on, you have things to do.  Don't stop them for me.  It was sweet.

We've taken pictures of the incision area all along the way.  In the picture around early November, the bulge is NOTHING compared to today.  We thought it was big then!  The pictures are not for the faint of heart, especially the latest ones.  I went back over the emails I've sent, too, and forgot tiny details in them.  Glad I saved them but I'm sure I missed some. 

Months ago, John made his own dvd "movie" for the memorial service.  We've made so many more pictures since then, I made my own yesterday.  Now to find the right song......................

Friday, January 14, 2011

cussin' kind of day

It began around 1:30 a.m. last night. 
I was awakened by a loud **sigh**.
Just when I doze off:  **sigh**.
This happens when John can't sleep at night.  The last couple of weeks he had gotten good about taking a p.m. or ibuprofen or something to relax him to fall back asleep.  For some reason, he wouldn't last night.  And just when I'd doze off:  **sigh**.
Around 6:30 a.m. I asked if he'd like to go to the couch because sometimes he sleeps better there.  He must have thought I was sending him to the couch because he had a little attitude about it, grabbed his pillow and headed out.  Not sure if he slept or not.

Which means he had a rough day.  He ate b'fast then laid back down, got up, laid back down, back and forth until around 11:30. 
For about 2 weeks, John has been trying to get me to make an appointment with his accountant to get quarterly tax info to him, and to ask questions about what is business/what is personal now that the business has sold.  I called the accountant Wed and he said come Friday [today].  I did all this in front of John, plus explained it to him after I got off the phone.  He gave me the 'thumbs up.'
But.......today, when he reminded me of the appt, and the time grew closer, he lit into me about 'how could we expect the accnt to drop whatever he was doing to get his quarterly done while we waited.'  I explained that we were only dropping things off and asking questions, NOT waiting for him to do the report today.  That appeased John for a few minutes, then he started in on the 'I never tell him anything' and 'we shouldn't drop in on the accountant.'

The lady from his health insurance company called for the fifth time wanting to know if he wanted the new program that waives a limit on Hospice coverage once your deductible and out-of-pocket are met.  I have explained this to him a gazillion times, and how we need it now that we're paying for Hospice.  He kept saying we didn't need it.  This, piled on to him being mad about going to the accountant put me over the edge.  I told John he was "frustrating the hell out of me." 
His reply,"You're always right; never wrong. blah, blah, blah"  He went to the living room and put his head between his hands and sat for a long time.  Wouldn't eat lunch before we left for the mtg.  I told him I was sorry.  I really did feel guilty for telling him he is frustrating because I can't imagine how frustrated HE must be, not being able to communicate.
He took bananas, water, crackers, and an orange, and ate in the car on the way and back.

The mtg with the accountant went well.  I have a few assignments to follow up on.  John insisted on paying him for the work he's done this year, to make sure he's taken care of because the accountant has been such a big help to us.  The accnt asked his secretary to pull John's file and see what the balance was.  She came in carrying a folder and said he didn't owe anything.  I looked at the accnt and he nodded and said that sounded right to him.  The secretary winked at me.  Not sure what's going on, but I KNOW he's owed for this past year.  John accepted his word and went on to the next subject.

On the way home, we went by the bank and the bank girl said John had some mail returned from them.  I confirmed his mailing address, but she said an account manager would call.  The lady did call later in the day and insisted on talking to John.  [I have already been to the bank and filled out a POA and told them what's going on with him and that he can't communicate very well.  If she can't see this in his 'file' then let her talk to him on the phone!]  I handed it to him when she called and they chatted.  Not sure how it went but I'm sure she came away from the conversation very confused.  too bad

We also stopped at the PO box and Publix.  Going north on Monroe, if you turn left onto the truck route, there is work on the road on up at the railroad.  Sign-holders have traffic stopped and it's only one lane traveling at a time.  There wasn't a sign telling you the street is blocked if you're going north turning left, so I did it.  Of course our lane was the one stopped.  They let oncoming traffic thru, then traffic coming out of Publix, which was where we were headed to check on John's meds. 
While we waited for our turn to go, the first car in line, about 4 cars ahead of us, asked the sign guy if he could turn into the Publix parking lot.  No one was coming, and cones divided what looked like a lane going to the shopping center from the one lane for traffic on the left side of the road.  A trooper sat on the side of the road where we waited.  The sign guy wouldn't let the first car scoot on.  Well.........once it was our turn, the sign guy on down the road motioned for us to go on the left side of the cones, but the first car went by one cone, then got in the right lane to go to Publix.  All the cars between us did the same.  The sign guys were having a fit because we weren't in the 'correct' lane.  But we all had on our right turn signals.  I knew where I was going. 

About that time, the trooper flipped on his lights and siren and was coming up behind me, the last car turning right.  The monologue in my head went something like this, "Bring it on, buddy.  With the day I've had, I'll win.  I'm not stopping."  I looked in my rearview again and he had turned off his lights and started backing up to where he sat before.  Ha!  We were doing NOTHING wrong.  I guess the cars behind us got in the left lane and did it right. 

John's medicine had no more refills and they are going to call the dr for more.  Like John said, it's on automatic refill.  They should have already done that.

Finally got home, ate, went to town to fax John's insurance permission to opt-in for the extra Hospice coverage because the accnt told John it sounded good to him.

Now John's head hurts but he's been asleep since 9 or so.  He went to bed around 6 but couldn't sleep.  I laid with him and while we talked, he said,"I know you're hurting.  Tell me what you think."  I told him again that I don't want him to go and I'll miss him a lot.  He likes it when I tell him that. 

Thursday, January 13, 2011

guys surprise

I'm so surprised at how many of John's guy friends call him and come by.  Where are all the old girlfriends who still chased him until recently??  Who cares.  I am impressed and kind of surprised that the men have faithfully emailed, called, and visited regularly.  You would think men are unemotional and non-relational, but quite the opposite has been proven around here.  Also shows the quality of friends and deep relationships John has.

Yesterday and today, John has had less words than before.  He is more frustrated that he can't communicate well.  He showed me several things today when I couldn't understand what he meant.  He walked laps around the house tonight, which he hasn't done in a long while.  I read an article to him about the essential doctrines of Christianity and it got him wound up thinking about God.

Wednesday, January 12, 2011

catching up is hard to do

Seems like forever since I've written.  Looking forward to getting in the groove again.


My first day home on leave and it was a busy one.  Mama and Daddy came by, and the Hospice nurse and Hospice social worker.
John's vitals are still strong.  He does drag his right foot more and he has less control of his right hand/arm.  His right eye is droopy and puffy underneath.  But he eats good, rests all night usually, and still cracks wise.  Lately, every noun is the word 'internet' so it's hard for me to follow some of his statements.  Such as, "If you go to the internet, we need internet on the internet".....literally how it goes, especially when he's tired.

The social worker came bearing bad news.  We hoped the Hospice higher-ups would let us be 'self-pay' and help us out with our bill, but since John has insurance, we can't.  This means we have to meet the deductible & out-of-pocket, then insurance will cover  up to his lifetime limit, which is about 1/3 already used.  There is a new part to his insurance, if we opt in, that would raise the limit for Hospice care--actually make it unlimited....after deduct/o-f-p.  Either way, we don't have the thousands a month Hospice costs, so we'll make payments.  Unless I can get him on SSDisability, which will enroll him in Medicaid, which will cover Hospice  totally, plus meds, I believe.  Will try to finish the SSD stuff tomorrow.

My replacement, Rebekah, did well yesterday.  She taught while I watched and tried not to interfere too much.  It was hard not to jump in when every little noise was made or kid got up or talked too much.  She will toughen up and do great.  Mama is going to keep volunteering. 
Sent a letter to the parents explaining briefly why I was taking a leave.
The bookkeeper helped me place the days for each pay period and my last leave day would be used up on May 8th.  It is such a relief to be home with John. 

One more broken item:  a glass bottle of makeup remover.  John was putting it back on the little bathroom table after his parents left Saturday.  I move most of our things out so they can have easier access.  It was a sticky, gooey mess on the tile but it came up for the most part.  Still finding little pieces of glass in the corner of the bathroom.

Rushed to get my report cards done last Friday.  Lame comments on most of them!  Managed to get several days sub plans done for Rebekah, loaded the treasure box and soap dispenser, updated the web page, ran off a gazillion worksheets, checked out books from the library, unrolled cotton balls, graded tests and uploaded scores, filled out paperwork on a troubled child, all since Friday.  Even taught a little in between.

John's tumor bulge is weirder and weirder.  It's getting longer, swelling at both ends, with more fluid pockets and one area in the middle of the middle that bleeds when I take the bandage off.  Today it looked like there were fewer fluid pockets and that one possibly leaked and is now a caked mess at the bottom of the bulge.  Sharon cut his hair Sunday and it's MUCH easier to wash his hair and pull the bandage off.  The last time she cut it, he thought that would be his last haircut ever.  nanny nanny boo boo  it wasn't

I'm taking pictures of the bulge every few days.  John says I need to sell them one day and make money.  I'd like to take my blog posts, email updates, and pictures and write a book about this experience.  We've had a lot of questions along the way, most of which received the answer 'everyone is different.'  No one, not even the doctors, would commit to a definite answer of what to expect or the order of decline.  Friends who have been through similar experiences with cancer are more help with information.  Imagine a book that walks people through the ups and downs and stages of decline, as well as services available, and what to do and not do.

John enjoys getting phone calls. He's so bored, even with me here.  He especially loves it when his niece calls. 

It's frigid again, in the 20's at night.  Tired of it and ready for spring. 

Friday, January 7, 2011

replacement parts

Met my replacement today and she is delightful.  She already has her paperwork and sub certificate complete.  She came today and spent time with me, but I was testing and not teaching.  Monday she'll shadow, Tuesday she'll teach with me in the background, and then Wednesday will be my first day off.  I'll be gone until after spring break at least.  We'll tell the kids and parents Tuesday.Wasn't expecting getting a replacement that quickly and smoothly, but like most steps along this path, God has orchestrated even the tiniest details.  I don't know how people function who don't know Him. 


We have a new governor.  Time will tell.

John's parents will head home in the morning.  He'll be home alone Monday and Tuesday.  Should be fine.  We'll all call him regularly.  Can't wait to be home.  It'll be like having 2 summers this year. 

John's niece called him again tonight and it thrills him.  Tickles him pink. 

Tired.  Going to bed.