Thursday, December 30, 2010

thriving thursday

tears, tears, and more tears
Selling the business finally hit John last night and he cried for a long time after we went to bed.  Once he finished, we both slept well.  He got up before me this morning [duh] and made coffee.  I could hear him sniffling.  He told me he had already had cereal, so I made myself a couple of fried eggs and sat at the table with him.  It was obvious he had been crying for a while. 
He admitted selling the business was getting him down, along with other regrets; not saving more money, not doing more to tell people about Jesus; etc.  It took another hour or so of talking and crying before he could stop.  But when the tears ended, John was himself.  He worked through it remarkably well.  I told him again how proud I am that he started a business and had it 20 years and worked it until he absolutely couldn't. 
We went outside to look at his equipment and what we were keeping and what was to be sold.  It probably helped to see everything, touch it, tell what pieces go with what.  I was surprised at how much I actually knew about the equipment.

Fun, fun, fun!  The Hospice music therapist came today.  She plays guitar and sings.  She played "Country Roads" by John Denver.  John recognized it.  She also did "One Day At A Time" which should be my theme song, except it's been so overdone I almost can't enjoy it.  I'm jealous because she has the "AFI Top 100 Songs" and it was amazing!  [I choked up when I saw "Come What May" from Moulin Rouge.]  Anyway....we ended up with me at piano and she on guitar, mostly instruments only.  Occasionally I'd sing.  Piano/guitar is an excellent blend.  John loved it.  She sightread over my shoulder from my repertoire of choruses.  At the end we did a horrible rendition of "Singing In the Rain."  When we finished, she asked him if he recognized it and he said, "No."  We busted out laughing because it's his favorite show tune from childhood.  "That bad, huh?" I asked. 
She'll come again in 2 weeks.

Then came the time to sell the business.  The buyer had everything in order; 3 copies of all the documents.  John had to sign his name a bunch of times, and he did pretty well.  Grabbed one of the neighbors to witness the signatures.  We had a long visit with the family who bought the business once the papers were signed.  Their daughter, and the mom, loved all my nesting dolls, so I gave them one I brought from Kyiv. 
Lots of people have asked me how I'm doing.  I say OK because I'm so busy in the middle of it all.  I'll fall apart later, I'm sure.  Don't have time now.

Emailed Pastor Bob's secretary and he wants to come over next week.  I asked if he'd do the memorial service and could we have it at Wildwood.  The secretary sent info on what the bereavement committee helps with, facilities, and program printing.  That's what I love about that church.  It's organized but with heart. 

Made an appointment for someone to look under the house and make sure we're not slipping away.  funkiness goin' on

It's been a stress-relieving day. 

Wednesday, December 29, 2010

wasting wednesday

We slept fairly well last night.  John was awake a lot but stayed quiet in bed, not tossing and turning like usual.  He got up ahead of me and made coffee, and when I got up, I knew something wasn't right.  His language took a dive in the night.  He seemed disoriented, kind of like he was after the seizures.  He hardly talked at b'fast and couldn't focus well, was really slow with eating.  After pancakes, John said he knew he was acting weird and didn't know why.  As the day went on, he slowly got better and perked up some.  I ran errands for almost 3 hours.  It felt good to be out and about.  Didn't feel guilty about leaving John home.  He rested and even nuked lunch.  I brought him Whataburger, which he ate later. 

The electric blanket I got him for Christmas [actually Sharon picked it up for me] didn't have the controls in the box.  I went to Walmart and they gave me the controls out of another box so we could keep the sage green one. 

Spent more time being with John today.  He wasn't very talkative until 8 tonight, and we talked mostly about God and what people believe and is he getting the message out about what Christ has done for us.  He is very concerned that more people don't know.

I emailed Pastor Bob today to see if he'd do the memorial service at Wildwood.  The lady buying the business is coming over with her husband tomorrow to check out the equipment and sign the agreement.  John is now stressing about every aspect of this.  Who will the check be made to?  Is he asking too much or too little?  Why can't she take the stuff tomorrow?  Will he have enough to pay taxes, his bills, and live on?  I can't imagine what it's like to be him right now.  He's really dragging his right foot today, especially when he gets tired.

The Hospice music therapist is coming tomorrow.  This will probably do me more good than John. 

When I asked if we could have everybody over Saturday to celebrate Mama's b'day, he gave me a thumbs-up. 

Trying to go to bed earlier in preparation for the sad day I have to go back to work. 
The last of the pretty leaves are falling off.  We're on a warming trend now, thank goodness.  Enough of temps in the 20's!

Tuesday, December 28, 2010

doing or being?

John made me stop today and lay with him on the couch.  It was nice.  Sometimes I get so busy doing things I forget to be with him.  I think since we're in the house together and I'm putzing around, I'm with him.  But he doesn't think so.  Since he can't read or write anymore, and tv is hard to follow, he's terribly bored.  So much so, he's called several of his friends to talk on the phone as best he can.  He enjoys it when his niece calls especially.  And speaking of the kids...............

Tim, Jennifer, and the kids sent us a 'junk and love box' for Christmas.  It arrived today and John absolutely wore himself out having fun with the contents.  They sent us toilet paper, shampoo, lotion, razors, shave cream, napkins, books from Idaho, maps, coffee filters, hot chocolate, a blanket, moose poop; all kinds of things.  For years, John has sent them a junk box for Christmas filled with items he finds during the summer cleaning rush, along with new things.  They also included a sweet letter about them being sad this is his last Christmas, and they wanted to send a box to him.  The kids also put in their Christmas stockings filled with stuff they chose; mugs from their town, post cards, hand drawn pictures/notes, and I got a picture ornament from a kids' meal.  
John said it was perfect; the bestest Christmas they could ever give him.  He called Tim and later Georgia called John.  He is slap wore out.  We took pictures of him/us with the loot, and also of him in front of the stockings hanging on our mantle.  
He now has a headache.  Back to reality unfortunately.  But it was an excellent break from it.
John's parents are coming Sunday for a week.  I'm so glad because I'll be able to work another week without taking days.  I'm not afraid to leave him by himself yet.  Mornings are a challenge though because he's slow waking up and getting going, but once he does, he's good.  Bored but good.  And he's taken rests when he feels tired, which he used to fight.  He can't wash dishes anymore.  His right hand is not trusty.  I've enjoyed our carefree days this holiday.  If we had someone to be here when he gets up in the mornings after I go to work, it would be perfect.  I'm going to try to line up some of his friends to come during the day, the week after his parents leave, just to visit and chat and maybe bring lunch. 
Taking it one week at a time, one day at a time.  Trying for more being and less doing. 

Monday, December 27, 2010

snowy sunday, mellow monday

Christmas was great fun as always at my parents'.  Sharon, Bobby, and Marshall beat us out there because John wanted to be clean and not gross to everyone.  We washed his hair, bathed, shaved, packed.  Got a thoughtful call from one of our high school classmates checking on us.  Marshall called while we were loading the car to see where we were.  When we got there, we let him go ahead and open his presents so we could eat in peace.  The adults opened theirs after lunch.  Only John and I spent the night.

In the night, John woke up with a headache.  He went into the next room and sat in a chair for a while.  Being the tough dude he is, he wouldn't take any pain meds.  It got so bad, he finally broke down and took 1/4 of a pain pill.  Half an hour later he took another quarter pill.  Nothing was helping.  After a while, 1/2 a tablet, accompanied by vomiting.  Morning came, along with snow.  The flakes were large and swirled in the wind.  Mama and I went out for something and Fluffy had snowflakes on her fur.  It snowed for over an hour.  During that time, I had called hospice and the nurse was on her way.  She ended up in Georgia because GPS sends you there on an incorrect route through the woods on a imaginary road to my parents' neighborhood.  When she finally found us, with Mama meeting her at the main road, John had fallen asleep thankfully.  While the nurse was there, we changed his bandage.  The tumor had grown and the bulge was touching the back of his ear.  This was new.  There was tons of yellow drainage.  I've noticed that when he has headaches, the next time we change his bandage, there's more yellow than usual. 
The nurse thinks it's puss and not brain fluid.  The stitch bled more than usual also, and made a mess.  She taught me how to give him liquid morphine and what pills to give him for nausea.  He took one and it helped for a while.  He didn't want morphine and chose to keep taking the pain med Dr. Chemo had given us.  I think John has a mental block against the 'comfort kit' of meds because those are for 'end of life' and he knows he's not there yet.  He wants to be, but every nurse that sees him says he's 'not there.' 
Daddy went to our house and plugged in the heater in the van so the tubes wouldn't freeze, and dripped faucets inside the house because it was cold and getting colder.  John wanted deperately to go home.  I figured out the reason was because we knew it was going to be in the 20's at night and the heater needed to be turned on.  When I told him Daddy had already plugged it in, John said, "I guess we can stay another night then." 
He slept better, got up at 3:30 to eat cereal and take more pain meds.  Got up around 9 this a.m.  Ate, laid back down, then got up and started getting dressed.  He was READY to get home.  We had a quiet day, back to 'normal.'
Our main Hospice nurse came.  John hasn't lost weight, had his usual sense of humor, and when we changed the bandage, the tumor didn't look as large.  Now 2 stitches are bleeding.  She gave me a 'spill' kit in case the tumor ruptures, but not using those exact words.  Don't know if having the kit gives me comfort or fear. 
Tonight, our preacher and Sunday School teacher came by for over an hour.  It was a great visit.  Very real.  John again told them all that matters is knowing Christ and what he did, and trusting him because we have nothing to offer God to redeem ourselves.  He is still eloquent when it comes to God.  very inspiring

Got a call from my dr's nurse and the osteo has spread in my body.  They want me to go to my endocrinologist [thyroid dr] because my thyroid issue is probably feeding the osteo problem.  I already have an appt to see her this summer.  In the mean time....I HAVE to start exercising again.  My hip always feels better when I'm moving regularly.  AND, the biggie..........drink less coffee.  Eat more dairy foods and dark greens.  I know what to do.  Just do it!!!!!

Friday, December 24, 2010

Christmas Eve

Last night was awful.  John woke up about 2:30 and couldn't go to sleep.  He got up and went to the couch.  That didn't help so he started his laps around the inside of the house.  He had taken ibuprophen or tylenol p.m. or something around 12:30 and didn't want to take anything else.  I walked laps with him, talking all the while, for about 15 minutes.  He tries to wear himself out doing it.  Then we went in the kitchen and he ate a bowl of cereal; back to the couch.  Tummy full, tired from walking.  It took until 4:30 then we slept fairly well.

Today John had even more trouble holding his spoon and fork.  He can't see what he's putting on the utensil when he uses his right hand, plus it's getting lazier.  It's equivolent to using his left hand; the right is weak and the left is not used to being utilized.  It takes him a long time to eat a meal.  But eat, he can.

One of the 'grandmas' down the street came over with a couple from church.  They brought pound cake, 2 kinds of fruit cakes, [about 10 slices total], candy, fudge, cookies, pecans, pickles, and chicken tetrazini.  Oh, and oranges.  I think that's all!  John hit the chicken tet 3 times today.  He loved it.  And has eaten 3 oranges, although I have to peel them.  We had a good visit with the trio.  "Grandma" has lived here a long time and knew some history on our house.  The man who built it was Jefferson, so it's called the Jefferson House.  He owned a furniture store; had a wife.  The sun room used to be an open front porch.  The rest of the house is original, one of the largest in town at that time.  

I spent several hours in the yard today for the first time in a while.  It felt wonderful to cut limbs, pull weeds, mulch leaves and put them in beds.  The weather was cool and slightly overcast...perfect for yard work.  The neighborhood animals all passed through at some point.  The dogs were looking for John because he gives them treats, and gave up on me pretty quick and went home.  

Had my first really good cry.  Hospice gave us a book about the steps of dying, and at the end is a short piece about how death is like a ship disappearing from your view.  It's still there for someone else to see, carrying its cargo just as it was when you last saw it, but it's now out of your sight.  John keeps telling me that, and I know it, because all people will live forevermore, either with God or separated from him, but living nonetheless.  I will see John again one day.  But I really don't want him to go at all.  He's snoring on the couch right now and it's music to my ears.  Looking forward to going to my parents tomorrow for Christmas and spending the night with everyone.  Won't be spending the night with Marshall tonight as I always have, but that's ok.  Next year.  

Merry Christmas to all and to all a good night.

Thursday, December 23, 2010

I'm bored out of my mind

John's favorite saying today.....I'm bored out of my mind.  Can't read, can't write, can't keep up with conversations on tv.  He took out some of his Bible commentary books and looked at the pictures in them.  I asked if he remembers the stories when he looks at the pictures.  He said pretty much, and pointed to a map of Israel and a particular place on it.  He remembers that Paul and Jesus spent time there, and in his head, he can recall this and loves those stories.  The sections of the books have large headings and I asked if he could read them.  Yes, in his head but not out loud.  The brain is an amazing thing.

We played checkers and I finally beat him!  Mama was our only visitor, and only because she left her jacket yesterday.  John's niece called.  He knew she was going to because his brother told him yesterday.  He got up expecting a call.  With the 2 hour difference, I wasn't sure how 'early' she'd call, but around 11 our time, I heard the phone ring and him say, "Oh, goodie."  They talked for a long time.  The highlight of his day.  We took pictures of ourselves outside under the gorgeous Bradford pear tree.  He wants the kids to see the beautiful colors of the leaves because all they have now is evergreens covered in snow; no colors.  

John and I changed his patch tonight, & I really think the tumor area is not as protruding.  I mentioned it to him and he said "good.  Maybe it's growing in now and it will end."  I just roll my eyes at him.  I know what he means but don't like it.  He got around well today.  Would do an activity then rest; do another activity and rest.  He stayed up until 10 p.m. and is snoring in bed now.

Talked to the accountant and lady who is buying the business.  Told them to talk amongst themselves because it's stressing me too much to deal with business-selling language I'm not familiar with.  I trust him to make sure the paperwork is correct, keep her protected, and get this done.  Although I'm sure once it's finalized, John will be at peace that everything in his life is complete and it will be the true beginning of the end.  

John had me buy him depends today.  He doesn't need them yet, and Hospice will give them to us eventually, but he doesn't want his first accident to be at my parents' when we spend the night there for Christmas.  Bless his heart.  He thinks of everyone and every thing.  I've never purchased them before, so I wasn't sure what size to get.  Hasn't tried them on yet to see how I did.

Almost Christmas Eve.  Mailed class drawings and a flag to Snowball at Glacier, and {finally} a copy of my book to the agent who asked for a copy back in March.  Should've done it a long time ago, but you know, life.   

Wednesday, December 22, 2010

wild wednesday

All of the sudden I have 19 posts.  How did that happen?  Have I written that much?  Have at least 19 days passed since I began this blog?  Time is going too fast.

Today was a BUSY, busy day.  One of our friends from high school came over this morning, and brought his son, the aspiring film school student, to film John talking about his beliefs.  We waited a week too long to do this.  Last week John could still talk my head off about God and apostles and details, but this week, he's lost a little more language and comprehension.
The filming lasted almost an hour and a half.  A lot of it was repetitive, but he got across the main points:  all you need to know about God is in the Bible; Jesus and his sacrifice redeem us from sin; miracles and tongues are not for today; it's our responsibility to study the Bible.  It's his trust in God and knowing he's redeemed by Christ, that gives John the peace to be ready to die.  "I hate to say it but I'm looking forward to going."
The tape will be edited and uploaded to John's youtube account. 
This was one of the last things he wanted to do before dying.  It is all-important for him to leave behind writing and video of him sharing God's message.

After these friends left, we ate lunch, John rested, then Mama came over.  The hospice social worker came back with more info on payment options.  We all feel much better after coming up with a gameplan.  There are still unknowns, but we can let it go until after the first of the year.  

A guy John has worked with for years and years came by with his baby girl.  She is a doll.  They sat in another room and visited and played with the baby while Mama and I talked with Hospice.  It was a nice diversion for John.  The friend is going to come back later in the week.  

Talked to a couple of friends/family today.  It's so nice to be off work.  But.......I find myself frustrated with John from being around him all day and night.  Mainly because he gets ornery if decisions are made that he doesn't understand.  He still doesn't want me to get him on disability yet, and when we talk about it, we fuss because we see it differently.  Sometimes I want to throw my hands up and say 'whatever' but I let it go and try again later.  
I can see clearly when he's tired and should lay down, but he fights it because he doesn't want to be up all night.  That's when he gets really irritable.  But all in all, there's not much to complain about.  He's handling everything well and for the most part, does listen to what I say.  Maybe I'm tired and don't realize it.

Tried to talk to his health insurance company today but they won't tell me anything because I'm not attached to the policy, so tomorrow I'm faxing a durable poa so they can tell me what the policy covers and doesn't cover; costs; copays; etc.

Another warm day.  We walked a little, and John went out by himself to walk twice.
The Bradford pear tree outside our windows is a spectacular unbrella of yellow, gold, orange, red, and every color in between. 


Tuesday, December 21, 2010

nothing in life is free

lost original of this due to crummy internet connection

Substitute hospice nurse came by and brought bandages; was shocked at John's tumor/incision site; is letting dr know it's leaking yellow & has one spot dripping blood.

Last night he had trouble getting up off the couch but today he's been very mobile.  Right arm, hand, and leg are getting weaker.

A management company he's done lots of work for for years brought a feast over today.
Thankful for everyone keeping us fed.

Was warm and sunny so we went walking in the street twice.  Our neighbor who also battles cancer met us on her walkway.  We're all taking one day at a time.

Still working with Hospice to find a way to pay for services once the new year begins.
nothing in life is free

Monday, December 20, 2010

errands, naivate', and meltdowns

Ran lots of errands today, saw friends, made phone calls, met Hospice social worker, cousins came over to bring food.  Makes me wonder how I work and get anything else done!

I am so naive to think Hospice is free.  I know I posted earlier about this, but I'm amazed that their services "require" insurance or the family pays.  They don't hound you to pay but nevertheless, the bill is there.  There's going to be a huge gap when John's deductible starts over at the beginning of the year.  Plus, his insurance's end of life care will only cover about 38 days, which unclear to us, began 5 days ago, at the time of admission.  And the days are spent/used/claimed consecutively whether you use their services or not.  Which means we just wasted 4 days.  Unfortunately, the days are not service days.  Which means we'll get 16 days in 2010, then come Jan. 1st, we'll pay because the deductible hasn't been met.  So, does that mean we lose the other 22 days?  Do we get 22 days before the deductible has to be met?  They are thinking about putting John on 'self-pay' so he can get medicaid to pay for it, provided I get him on SSdisablility by then.  [friend in high place can make it happen]

We had long discussion of this with the social worker and the financial lady on speaker phone trying to sort it all out.  Still isn't sorted out.

John was his usual jovial self while the social worker was here.  The guy asked if this was his usual demeanor.  "Yes," I said.  "He's a laugh a minute."  By the time the session was over, John and I were so stressed, we almost had our first fight.  He says I don't tell him things I do; that I make decisions and have conversations with people and don't tell him.  He even cussed.  I do keep him informed and let him know what I do and what's said.  He truly doesn't always hear me.  What he was mad about was the disability.  I told him I haven't told him anything about it because I haven't gotten it done yet.  It seems to be the one thing too much.  We have the letters from his drs.  After we talked a lot about it and got it clear, then we cried.  It was a stressful afternoon.  I'm SO glad I'm home with him these 2 weeks. 

Hospice nurse will be visiting for the first time tomorrow morning.  I'm so tempted to get every service I can before the end of the year, but I don't want to be spiteful.  Our 'team' is very nice and helpful and have gone out of their way to see to our needs.
The tumor bulge has a spot that drips blood.  I think it's where a stitch is.  Hopefully the nurse can make some sense of it, and help us bandage it better.  The ace didn't work too well because in the night, when John would roll his head, it would slip off.  Right now he's using an old stretchy headband of mine.  I told him he looks like he's ready to run a race.  Looks like a sweatband from the '80's.

Also tomorrow, one of the management companies John has done tons of work for is bringing dinner/lunch/food.  I'm learning to accept. 

Sunday, December 19, 2010

perfect present

Had a great time at the mall yesterday singing the Hallelujah Chorus with a big bunch of strangers.....and some old choir friends I haven't seen in years.

John's friend, Mike, was at the house and they were eating wings when I got home from the mall.  I left them talking, and walked around downtown Havana for a while.  It was drizzling, cold, windy, and depressing.  The Christmas music was slow and and unexpected downer.  Not many people were shopping Havana.  Everyone was at the malls.

John went to bed about 7:30 p.m., which meant he woke up around 2:30 and couldn't go back to sleep.  He walked laps around the house until he wore himself out, then went back to bed.  His morning was emotional.  He was still tired, the incision had leaked yellow again, and he was weepy. 
I never know what to expect with John because he is just like a kid when it comes to gifts.  He gave me my Christmas present after we finished breakfast.  It was an enlargement of a picture I took on our honeymoon to Cumberland Island in September!

A little backstory and explanation:
When we decided to get married, my friend, Kelly, gave us a set of little rubber duckies; a bride and groom.  I sent them on a honeymoon to Kiev at spring break with my friend, Cheryl.  They ride in my car; were at our wedding ceremony at Oven Park, went on our honeymoon to Cumberland Is.  John made fun of me taking their pictures....with horses in the background; with the Dungeness ruins; with the marsh as a backdrop; on the rail of the dock where we caught the ferry to the island.  This is the picture he chose.  He wanted a gift that was perfect and personal to us, and saw the picture on his computer recently.  Perfect.  "You've had them with us all the time," he said.  And it's a great picture.  No one else would 'get it' but we do.  Well, family and a few close friends know about the ducks. 

and here it is!

We're putting the gauze pad over the tumor, and now using an ace bandage to wrap around John's head to keep the pad on.  The sticky bandages don't work anymore, partly because the tumor is so big, and partly because a bigger pad is in his hair and pulls when you take it off.  He feels more secure with the ace.  Today the gauze had quite a bit of yellow drainage on it, and the incision had a nickle-sized dried yellow glob of drainage.  John wants me to call the Hospice nurse tomorrow and let them know.  Not that they need to visit, just let someone know.  Not sure if it's brain fluid or infection. 

The preacher's sermon this morning was on Jesus and how he gives life.  Ironic on the surface, if you took it to mean just a fuller life on earth.  And I remember what John is always telling me; I'm not really dying.  I'll be alive forevermore with Christ, which is the life Jesus gives.  Eternal life in him.  I found my mind wandering to death certificates and how many copies I'll need.

Have a list of errands to run tomorrow so I can be home (!) the rest of the holiday/vacation.

Friday, December 17, 2010

thrilling thursday & failing friday

Thursday:  a friend brought lunch to John.  When I got home, I asked him where lunch came from.  He thought for a second and went, "Moo."  I knew immediately.  Chick-fil-a.  After our friend left, Mama brought a chicken pot pie...homemade.  and Congo bars.  A must-have for chocolate lovers.  Also, when I walked in the door, John was dressed in a blue shirt and jeans.  He looked handsome.  First time he'd dressed in a week.  Was wound up and full of energy.  It was a very good, encouraging day.

During the night, he woke up and couldn't go back to sleep, so around 3:30 he took tylenol pm.  I knew when I got up for work he'd be zonked still. He told me "good night" when I left.  I called during the day and he sounded ok but not as chipper as yesterday.  When I got home, he hadn't dressed and was tired.  He was glad no one had come over.  His childhood friend, Mike, called and is coming tomorrow around lunch time.  John is happy he's coming.  Loves talking about God with Mike because he always has lots of questions. 

I'm glad Mike's coming over because I'm going to the mall with Mama to sing in the Hallelujah Chorus flash mob.  Also finishing up some Christmas shopping.  Hate leaving John alone so much.  Have a mtg Monday to have my name changed on my retirement while I'm still in the habit of getting up, then I should be home for the two weeks.

The incision looks much bigger today.  It seems to be spreading wider now, not just poking out more.  You can see the stress of the stitches.  A day at the time.  A day at the time.

Usually, John goes to bed before me because I'm the night owl.  Tonight he was again in bed before me and I said something about coming in later and he said, "yea, after I'm asleep.  I'd like to fall asleep holding you once in a while."  How can you deny that request???  I put on my pajamas.  He was surprised.  I said it was ok.  I'd get up and finish what I was doing after he fell asleep.  He laughed.  And I did get up.  I can tell when he's asleep because his fingers and hands twitch.  He also made a snarling face a few times.  Don't know if he was dreaming or his sinuses were bothering him.  We've both had a cold for a couple of weeks. Almost over, tho.

Didn't get much done today because of partying with my team on our break, but I did leave a msg with the Hospice social worker who wants to meet us.  Gave John's accountant a heads-up that we have a buyer for the business.  And me. 

Walking into the bathroom, I hit my piggie toe on the door jamb.  Don't think it's broken, but it hurts, and is swollen.  I've had my boo boo bunny on it off and on all evening.  bummer

Wednesday, December 15, 2010

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 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.

Monday, December 13, 2010

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! 

Sunday, December 12, 2010

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.

Saturday, December 11, 2010


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]

Thursday, December 9, 2010

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.

Wednesday, December 8, 2010

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. 

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....

Tuesday, December 7, 2010

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.

Friday, December 3, 2010

Friday Family Fun

John's brother, Tim, and his family got into town late Tuesday night, really Wednesday morning.  Tim has taken John to run errands, to Whataburger for lunch, and who knows what all.  Big help to me, but most importantly, they are spending time together. 

Last night, Sharon and I went to the Prism concert at Ruby Diamond Concert Hall.  The newly renovated auditorium's acoustics are music to your ears, but unfortunately also accents the chatter of rude auidence members.  Ninety minutes of non-stop music, ending with a gut-vibrating ending with the symphony and Chiefs together.

Enjoying being around niece and nephews and seeing John acting like a kid with them.  West, #2, asked me if I was going to keep living in my house once Uncle Dennis is dead.  I told him I was.  Jennifer said he's been full of questions, so I told him I'd answer anything he wanted to know. 

Tonight we ate dinner at Jennifer's mom's, then Tim, Jennifer, John, and I went to Marvin and Glenn's for coffee and cookies and queso.  We had a great time.  John had a hard time keeping up with the active quick moving conversation, but when we got home and he told me what he heard, he was right on it for the most part. 

Still haven't heard from Dr. Chemo.  He called yesterday but I wasn't at the house.  I'll have to call him Monday to see what all is going on.

Tomorrow, John's parents are coming from Daytona for a week or so.  They'll be staying with us.  I'll probably be going to the Christmas parade downtown with Sharon and Marshall tomorrow night.  Always fun.  That will give John and his parents some time to get caught up.

On the way home from Marvin and Glenn's, we saw a buck crossing Lake Shore near McGinnis Arm.  It had 3 nice points on the right side and 2...really 1  1/2 on the left.  Looked like the left side had been broken off.  Makes me want to hunt.   In 8 days.

Tuesday, November 30, 2010

Can't quite figure out how I keep getting these weird color highlights on some words.  technology

I look forward to writing every day.  weird   I haven't looked forward to writing in ages.  It's good to end the day in reflection and remembrance and leave it here.  Saw where you can have your blog printed into a book.   good idea

Today I called the auto glass insurance fix-it place and they're coming tomorrow to fix John's van windshield.  I also called Hospice and gave them more info to add to the file, wrote a letter to the anatomical board requesting his ashes be returned to us, went by the funeral home to meet and greet and find out what steps to take  "at that time."  Everyone we've worked with so far--Hospice, insurance, accountant, funeral home--has been very nice and helpful and patient.

When I took the class to the playground today, several of the kids stepped right over/around a baby snake on the boardwalk.  It was camouflaged and about 10" long.  I sent the other kids to another entrance and stood guard--but not too close--and called the office on my phone.  It seemed like forever before a custodian came and killed it.  Several adults identified it as a pigmy rattler.  [spell check is going nuts over pigmy but can't give me another spelling!] 

John is so excited about the kids getting here soon.  I really think once they leave he will give up.  He's had a good day; been right with me on conversation and saying words he hasn't thought of and used in ages. 

Time for NCIS, which we watch every Tuesday night. 

Monday, November 29, 2010

Marvelous Monday

Today, John and I both had dr appts.  He and Dr. Chemo decided to not do chemo anymore.  John gave it the old college try: surgeries, radiation, chemo......he's done with it all.  Dr. Chemo did give us info on another type of treatment, but John isn't interested.  I can understand...sort of. 
Tonight we filled out paper work for Hospice, the Anatomical Board for body donation, DNR, and read mail from the insurance company.  I'm mentally exhausted.  He got very frustrated while we filled out the paper work because he can't understand it all.  That's tough.
John has been so adament about cremation, which I'm not crazy about.  I still think donating his body for study will help someone else later.  They will return the body instead of cremation, too, but that's too creepy, and I wouldn't want to see it after they work on it.  I wish Dr. Surgeon could be there for the study and learn what went wrong with the metal plate, see how large the tumor got, see the destruction radiation did; etc.
Who better to learn from it?

Did a little decorating in the piano room last night.  I'll get done what I can.  Love decorating for Christmas.  Am thinking of doing a "Nutcracker" unit with my class this year instead of Holiday Customs Around the World. 

Snowball, the snowman at Glacier, was re-born yesterday!  And my, how he's grown.  He's a big boy this year.  My class will send him an American flag to hold, I've decided.
Today I came in late after my dexa and picked the kids up from lunch.  I brought in Marshall's old lava lamp and was chatting up the kids about their morning and went into what lava is; etc, then turned on the lava lamp.  In the midst of it all, the AP came in for an informal eval.  Haven't gotten feedback on that one yet.  It was a lively discussion with lots of big science words!

Going to bed!

Sunday, November 28, 2010

Satisfying Saturday

After being home with John for several days, it's going to be hard to go back to work Monday. 
No headaches for him today.  yay

Went to my parents' along with Sharon to eat [again] and watch the first half of the Gator game.
Watched the second half at home with John while I undecorated the fall stuff and redid the mantle for Christmas.  Got a late start so I'll have to do the other rooms a day at a time, especially with the Cogdill family due in starting tomorrow. 
Turned cold after the little bit of rain yesterday.  John has always been the hot one, but with chemo and some weight loss, he's chilled easily, and being post-menopausal, I've gotten warmer over the years. roll reversals

We both have Dr. apptmnts Monday, quite by accident, but good for me.  I'll drop John off then head for my dexa scan.  Oh no!  I just realized I forgot to leave sub plans for Monday a.m.!!!!!!!!
Like I don't have enough on my mind........probably why I forgot!

Thursday, November 25, 2010

Especially Thankful

Really, really thankful for so many things.  It's been a good day.  Lunch with the parents, dessert with them and their pastor & family, hunting, sister's family @ dinner.  Saw an armadillo, squirrels, birds, and the biggest deer track I've ever seen.  Now to find the buck leaving the print!
No early shopping or hunting for me.  
Love to all,

Wednesday, November 24, 2010

The Day Before Thanksgiving

Wednesday, the day before Thanksgiving.  Thanksgiving should be done every day.
A Hospice nurse came by this morning for preliminary meet & greet/answer questions, get us in their system so when we really need them, we're ready to go.  She was incredibly nice and patient with all our questions.  Of course, John made us laugh several times during the dreaded conversation.  He is amazing.  That is the peace that comes from putting your trust solely in God.

This morning, John reminded me again for the millionth time to remember the most important thing is to know what God has done through Jesus; given us redemption, salvation from eternal damnation/separation from God.  Only by accepting Jesus's death and resurrection can we be saved from hell and made with God.  Christ alone.  God's word alone.

About 3 weeks ago we had to put our cat, Smokey, to sleep.  He was at least 14 years old, and the best cat ever.  He never meowed until I actually got out of bed in the mornings, and many mornings I'd wake up with his nose an inch from my face, willing me to wake up.  I could tell when storms were over because he'd come out from under the bed.  Smokey and Spike the chiuaua were great pals.  His 'happy place' was in a kitchen cabinet.  It was 'his' from the day we moved into this house.  When he'd get his shots at the vet, he'd get out of his carrier and head for the cabinet.  If it was shut, he'd paw it open, climb in, and come out occasionally to fuss at me, then go back in for a while.  He hid his favorite toy mouse in the very back corner.  On cold days, he'd hide under the bed covers curled in a ball.  If you touched him, he'd grunt at you. 

Smokey has a large mass in his abdomen that grew quickly in a 3 week period.  He could have gone through surgery and chemo, but I said one man on chemo in this house is enough.  He wasn't eating and had lost 4 pounds; wasn't hopping on the couch with us or even onto his condo to look out the window.

And then there's the time HE hit a car.  Smokey's right eye had been put out in a fight years ago, so he never saw the car coming from the right until he hit its front hubcap.  I saw it happen, shut my eyes, and when I opened them again, he was gone--for good I thought.  I called John all in a panic.  He searched the neighborhood for an hour and couldn't find the cat.  Three days later, while I was on the phone with John, up ran Smokey from under the shed behind the house; his favorite place to hide out. 
We won't even talk about him tearing his ACL and having surgery to fix it............

We miss Smokey a lot.

John's accountant told us about donating bodies to FSU College of Medicine.  I've researched the process, and it's only a little more cost than regular cremation, which John wants in order to keep costs down.  I'd feel better about cremation knowing the use of his body could help someone else down the road. 
All donated bodies go to the Anatomical Board in G'ville.  If you don't specify a particular location for research, it goes to the next open spot.  We'll specify FSU.  The disclaimer says it takes 2 years after donation before you get your loved one's remains.  Two years is a long time.  But if it helps in the research to find a cure for brain tumors, it would be worth it. 

Tomorrow is Thanksgiving and the word doesn't even begin to be adaquate.  [Does that statement even make sense????]  But you know what I mean! 

Goofing around T'giving 2009

Tuesday, November 23, 2010

First Entry Jitters

Yesterday I bought a digital camera for the first time.  Today I'm blogging for the first time.  Guess I'm finally entering the 21st century. 
It's also been a very long time since I put thoughts into written words on a regular basis. 
My goal is for my entries to not be just about dealing with John's illness, but other aspects of life, too. 

We started dating almost 8 years ago.  August 31, 2009, John had his first seizure, caused, as we found out later, by a brain tumor.  It's glio-blastoma, or "the kind Ted Kennedy had."  The average life-span once it's diagnosed is 18 months.  We're 15 months from the original seizure, but I choose to think of it as a great year.  In February, 2010, they removed the second growth of the tumor, then in March, two incision revisions.  May brought another trip to the hospital because of air leaking into his brain from the incision.  Those stitches are still in his head.

In April, John proposed marriage.  We were married in May and June, and in September, we celebrated our honeymoon by visiting Cumberland Island, GA. 

This is part of an email I sent out Oct. 16th:

I went with John (Dennis) to see the brain surgeon yesterday.  The purpose was
to find out when he could have the incision redone by the plastic surgeon.

When Dr.  looked at the site and found out it rarely leaks, he said we should leave well-enough alone and not fix it. 

I mentioned that in the last 2-3 weeks, there has been a decline in his speech and
ability to process what's said; could this be tumor related or effects from surgery, and
Dr. said it could be either one.  I am very anxious to have an MRI done. 

John and I have talked more about him not having the corrective surgery and he's not
happy with Dr.'s decision.  After the MRI, we're to go back for the results, and at that time, John will tell the Dr. his feelings about not having the surgery.  He can't get that side of his head wet, and hasn't been able to since May.  He has to wear a bandage whenever he goes anywhere, and he's just tired of it.

We are waiting for an MRI appointment.  Chemo week is a little tougher
each time, but Dr. Chemo doesn't want to back off the high dose. 
John's attitude is good, and if you've talked to him, his sense of humor is still intact.  Not to say there aren't down days, but overall, he's a trooper!

Chemo in November went very well.  The MRI found the tumor had returned.  When John pressed the Dr., he gave him 6 months.  This started the conversations about cremation, Hospice, funerals, and everything else you can imagine.  It seems to help John to talk and plan.  Some days it drives me nuts.  Isn't there more to life than liquidation of everything you've lived?  If John wants to go to Burger King, we're going.  If he wants me to keep my hair long, that haircut can wait.  It's pretty much whatever he wants. 

In other postings I'll relay some from the conversations we've had and decisions we've reached.

Hmmmm...........this wasn't as hard as I thought it would be.