Friday, February 27, 2009

breathe

Well- nothing is normal. And nothing will be normal again.

Nothing.

I know that - in time- there will come a new kind of normal....

But- I wonder what one does in the meantime- in the netherland between what is and what willbe.....

It's a strange place to be in..... cloudy- no that's not it.... foggy maybe- fog swirling around..... not terribly uncomfortable but strange- like walking in a dream You can't see the next step- you know only to do the next thing..... totally dependent- like an infant- there is nothing to do but give it up to God...... there is nothing to do but let yourself be held..... at the same time..... life still going on- everyone is still involved in their own lives- and giving up big pieces of their own lives for ours.... dogs still need fed, kids still need up, the laundry still needs done.... Every decision seems to carry significant weight- like dominos- no- like a house of cards..... If I decide to go home, will this happen..... If my kids need me.....will this happen....

In the midst of it- people stop me and remind me to take care of myself..... to reground myself... what a blessing it is to have them..... this is a long road...... I think we are only at the first bend..
I can see no further than today- than this moment...... I take a deep breath....and another... third deeper yet.... I find gratitude.... another.... I find thankfulness.....another... I find faith...and another....

Thursday, February 19, 2009

blogging

so- I've discovered why I like to blog.....
I haven't really been sure- I don't like to get to personal on the world wide web....

but blogging seems to wake me up in my own life....

noting something- or giving myself a mini sermonette (is that redundant? I guess it would be mini sermon) seems to make me pay attention...

I could write the same thing in a journal- and promptly forget. When I put it OutThere- I seem to remember...

I was leaving N Canton to get on the freeway yesterday- and I heard - as if in the distance- the sound of bells....

I turned off the radio (rock) and lowered my window

Turned out to be bells from a nearby church- playing "Nearer My God to Thee...."

The bells triggered something in my brain
I got quiet
I thought about the things I had written yesterday
finally I could pray....

It's hard to know when to take off and when to work..... My brain is in Cleveland, even when my body is somewhere else..... I need to be connected- to be guided..... so- today I am on my way to Cleveland.... first things first..........

Wednesday, February 18, 2009

prayers

My beloved coach -Robin Chaddock- (google her- she's great!) asked me the other day- "how is your prayer life in the midst of this?"

I was absolutely stunned to realize that suddenly..... I don't have one....
I hadn't realized....

Funny too, because I have been in the car nonstop - and the car is often my communing place. I have prayed while driving back and forth to Cleveland- but not my normal conversational prayers. These have been the screaming prayers, the sobbing prayers, the bargaining prayers..
I put in a Casting Crowns CD one day- but turned it off abruptly and went back to my rock and roll (strange- cos I rarely listen to rock)

I've been mulling about this in my few "off" moments- There is a "should" in there- The little niggling of guilt.... but I toss it aside...... I'm learning that the "shoulds" are not much use.

Two things have occured to me- 1. God is an honest God..... The Psalms are full of rawness- David crying out to God. I love the 38th chapter of Job-where God is saying "were you there when I..........." this is who I am - this is who you are...... 2. This is what it means to have a body of believers.... I honestly honestly believe that I can actually feel the prayers that are going up in our behalf- that people are "standing in the gap" and praying for us when we cannot pray for ourselves.... I Feel it...

Natalie Grant has a song that is written for a couple who have lost their infant- it is so haunting- but it says "this is how it feels...... to be held...... when the sacred it torn....... and you've survived"
Held. Cradled in His hand..... He is God, we are not..... I can rest....

Friday, February 13, 2009

a moment

I was in the hall when the call sounded -Code Blue G70 -30. For the merest of seconds I paused, Dan's water pitcher clutched in my hand. For the merest of seconds my eyes met the eyes of the 20 something woman coming down the hall toward me, pushing an IV pole and holding the hand of her bald husband. That nanosecond is frozen in my mind. A bustle of white went by us, quietly controlled- no fuss, no muss. I turned and saw the elderly man across the hall, suspended for a moment before entering the room of his wife.

For the briefest of moments the three of us were one entity

Then, as one, we moved on..... back to our own worlds.... to our own battles....

Thursday, February 12, 2009

sorting through

I received a card yesterday that shook me up so much- I just need to write to enable myself to think it through....

It was a nice, generic card- but on the inside this person had written...."you know that God is so good that he will never let anything happen to you and Dan" and went on and on about leaning on my father....

It was like an axe cut through my brain, splitting it into 2 sides.... yes- God is good and yes I believe that...
On the other hand- obviously something bad, really bad is happening to me and Dan. They had told me at Cleveland Clinic to go ahead and contact Social Security and begin the process of qualifying for disability for him. I know from my nursing experience that takes forever and 2 days...... but they told me he had a "compassionate acts" diagnosis- and it would speed up the process. Obviously- if this is bad enough to speed up the Federal government- it is bad...

I think I have been living in a bit of denial..... and I think that's a healthy thing. I also think we have chosen to live in optimism and hope- knowing that this APL has a high cure rate and a cure is Indeed very possible. I do believe, with all my heart that there is a soverign God who knew this was coming. I believe that my instinct to seek joy- which started in Jan was from God..... I believe the fact that we put Dan on my insurance in Jan was from God...

The pressure in my brain is starting to lessen even as I type, even as I think this through...

God is a God of eternity- we are not made for time- we are made for eternity.

What I read in Isaiah yesterday comes back to me.....

A powerful God, a loving God..... not a fairy tale god.... A God who knows the beginning from the end.... a God who works with eternity in mind...... The God of the Psalms- where David cried out to Him from the depths of his anguish- and when David was honest with God- God answered him.... every time...

I think again of that old hymn.... "WHATEVER my lot- You have caused me to say, it is well, it is well, with my soul"....

I feel better- thanks for giving me a place to sort through this.....

Wednesday, February 11, 2009

morning thoughts

We set up a web site to keep people up to date on my husband's illness ( I still can't say leukemia) Leu ke me ia. There. I said it.

Last night a friend drove me to Cleveland Clinic- and when we came out of the hospital and into the parking deck- we realized we had No Idea where we had left the car. It was quite the dilema. We checked out a level- not it -up the elevator, down the elevator eventually we resorted to pushing the panic button and following the noise- "no it sounds like that way"- I'm sure we didn't disturb anyone........... and somehow we managed to have a good laugh... Imentioned this experience when I posted last night.....

This morning I had an email waiting from a high school friends of mine. She and I spent several weeks bumming around Europe with backpacks and naitivity shortly after college. She reminded me of the night we stayed with a lady in Paris ( we got her name out of a book-perfectly safe!) Anyway- there were 3 apartment buildings that all looked alike. We left, went out to see the city- and when we returned we had no idea what apartment building we were staying in. We spoke no French, of course. We had no phone number to call. All our possessions were in our backpacks in that apartment building. I don't know how long we wandered, in and out- up the elevator, down a hall- "is this it?" "I don't know" Back down the hall, down the elevator outside to stare at the buildings again.... Oh to be young again!

She reminded me of that memory- gave me a good laugh- a sorely needed laugh, and then she told me to find some quiet time for me. It seems that the people who know me best are telling me the same thing- find some quiet time.

So I did- I am- right now..... I opened up my bible- which I need to do more often. It opened to Isaiah 43 Here are a couple snippets .... this is what the Lord says- he who created you..... he who formed you... Fear not, for I have redeemed you... I have summoned you by name.... you are mine... When you pass through the waters, I will be with you and when you pass through the rivers, they will not sweep over you, When you walk through the fire, you will not be burned, the flames will not set you ablaze, For I am the Lord, your God, the Holy one of Israel, your Savior......Since you are precious and honored in my sight and because I love you.....Do not be afraid for I am with you

That is something I can hang onto today- at this time when I am so tired- and truly- so afraid..

Friday, February 6, 2009

morning

well, a day of wallowing followed by a night of actually sleeping - and this morning I feel better
maybe sometimes you just have to wallow in it for awhile

a good friend sent me a card once that said "sometimes in life, it just is what it is" That was the favorite saying of one of our favorite patients...... "it is what it is"

It was a week ago today that Dan was diagnosed. A week. Isn't time funny- I would swear it's been a hundred years

I read another blog last night just before sleeping "Miles" is the blogname. If you think of blogging as condo living, it was written by my neighbor (follower) to the right. I figure the blogs I follow are the people down the street! anyway- he was writing about bells and mindfulness....

I dreamed last night of the little white church down the road from the little country house I lived in when I was single. The bells would peal out every hour (I think- maybe it was more often) but I can remember swinging on my porch swing, listening to the sound drift softly over the hills and feeling so peaceful. It is a good reminder to me to be mindful today- to listen- to remember- to get still.

It is a good reminder to find some joy in this journey..... That's how this year started- with the idea of looking for joy. God must have known what was coming (!) and reminded me early to look for the joy along the way....

BTW- I found the checkbook. It was in Cleveland. In a coat pocket.... We had a good laugh. It helped.

Thursday, February 5, 2009

whining

well, may I just say it..... this sucks

there- I feel better.... a little

I can't find my checkbook. I never can, but there is no one here to blame. It seems wrong to call Dan in Cleveland Clinic and ask him what he did with the checkbook..... It rarely turns out to be his fault anyway- I'm usually the one who has stuck it in a pocket- but he can normally point me in the right direction.

I always knew I didn't want to be a single parent- and I was right! There has been nothing wrong with the boys..... It just feels like a boat load of responsibility. There didn't seem to be any point in setting the table tonight- but it felt wrong to sit around with plates on our laps...

I stayed home today- didn't go to see Dan. It's what he told me to do.... to get some rest.... It's 174 miles round trip- 4 hours in the car- It seemed like the logical thing to do- and I think it was the right thing to do.....the boys need some normalacy - I do too..... I just kept calling him all day...

I know we are in this for the long haul, and I have to pace myself. I wonder how many times I've heard myself say that to a weary caregiver. "Put your own oxygen mask on first" How many times has that come out of my mouth? I'm beginning to see why it's such difficult advice to follow....

On the brighter side- we certainly have found out what great friends we have. One of them came here the other night and took my house key- she's planning to come here and clean tomorrow. It might be the end of a wonderful friendship! I hope she knows what she is getting into! I told my brother that- half laughing, half crying. He laughed so hard I was sure he was going to wreck the car. "You're screwed" he said..... He knows me to well..... There is nothing like a brother. He had no sympathy when I told him I had gotten up at 5am to clean before she came to clean- he just laughed all the harder....
Others have brought food-people keep texting and calling. Every time I feel like I can't go another step - there is someone checking in on me to remind me that they care.... I think really-nothing else really matters

So- I've whined- and I feel better. Think I'll go to bed early so I can get up and find the check book.... and maybe clean a little too

Monday, February 2, 2009

hodge podge

Dan arrived at Cleveland Clinic Saturday evening. I am trying to pull together every thing I have ever learned....
This is just a hodge podge of thoughts...
First- be grateful. We have been innundated with phone calls, text messages, emails. I treasure every one. I let the love surround us, blanket us. I wallow in it.
Our friends, our family- I could feel it the moment they heard. We felt the shift in the atmosphere when the prayers started. I treasure every conversation and every message and I play them over and over in my head
I meet every Saturday morning with some friends to pray. We have met for years. Saturday morning, they walked in our hospital room. "It's Saturday morning- where else would we be?"
There are the people I know I can go to anytime- my lifelines.... People I can be 100% real with. I need those people...
There is our family- there is nothing like family.
The people I work with- that is another family and I am so grateful to have them
Our church family
Our community
There is so much surrounding us- invisible but real. Those little proliferating blast cells can be seen under a microscope- but what surrounds us is invisible and much more powerful than those tiny, immature cells...

I was helping in Nate's Sunday School class last week- part of the lesson was from Ephesians 6. Put on the whole armour- then stand. Note to self: read that today-
A friend called yesterday and said part of the music at church yesterday was based on Isiah 40:28 (I think) through 31. Note to self- look it up! She is writing it down and bringing it to us.

God- it feels so good to know we are not alone in this. One of my emails ended with that sentence "you are not alone" There is power there....

I can't keep sitting here thinking- I have to go.... I'm so glad that even though I am by myself, I am not going alone....

Kaboom

The only thing on my mind Friday morning at 9am was making sure my vacation request was coordinated with our friends vacation. At 3:30 pm, our little insulated world got blown apart by something that can only be seen under a microscope...... they are quite sure my husband has leukemia. I can barely type the word.
He had been "achey" I had been complaining because he was sitting around to much. Oh, the guilt....
He had seen Dr Hiestand the week before and gotten some antibiotics for a sinus infection. Everyone is telling me now that they thought he looked pale. Hindsight is 20/20 and I know now that he did. A piece of my mind had registered it, noted as I was rushing out the door.... By Friday, however, he looked like a ghost-we agreed he would call the doctor again....
I got the call as I was walking across the bridge into our hospital to see a patient. We agreed that my son would drive him to the hospital and I would meet them there. Family members were passing me on their way to the parking deck. I always watch faces, reading lines of dispair. It hit me..... I'm walking in as one of us- I'll be walking out as one of them.
I spoke with our family doctor on the phone. We all love him. I heard it in his voice, before I heard the numbers. He referred Dan to an oncologist, Dr Trehan. I was so very very grateful it was her.
We sat together-we cried. I don't have words for that time and space....Dan sent me home to check on the kids. Dr Trehan called me here and told me what tests she was ordering and went over the numbers again. I can hear the pain in her voice "I'm so sorry Sally"
I am so grateful that there was someone I could trust, who would also let herself feel. She took a piece of my burden and put it on her own back, as did Dr Hiestand, and Dr Hilyer who came in the next morning.
Each nurse that cared for him brought competance and concern. There wasn't any sugar coating, but there was compassion. We knew that they felt our pain. By Saturday- we could look at each other and say the word aloud. Leu-ke-me-a.
Bone marrow biopsy today. "They say" it will confirm the diagnosis. At the same time- right now there is still a thread of hope that it is not. I'm wrapping that thread around my finger and taking it along...