Tuesday, February 7, 2012

Heading out

It seems we have been doing a lot of packing and unpacking and packing again.   We are headed out tonight to stay over at Kristi's to be at the brand-spankin-new Stephanie Speilman center tomorrow morning, 7:30 sharp -- with an immediate blood draw that I absolutely dread.  I have no issues with needles, just the written results on the pages.

I am praying for good neutrophils, good WBCs all the way around, good platelets so I do not have to miss another treatment. 

I then meet with my oncologist at 8am, and depending on the results on the blood work will move on to the "bust-your-(you fill in the blank- I was thinking gut)" double chemo IV day, carbo + taxal. 

God has watched over us greatly.

It seems with the steroids and chemo that I get a bit of what the "hat specialist" called "chemo-fog", so it is difficult to read or watch tv, so I have been trying to start memorizing portions of scripture again to keep my brain from turning completely into mud. 

This is the one I  have been working on..... sadly, I have only made it to verse 3..... 

Psalm 57

 1 Have mercy on me, my God, have mercy on me,
   for in you I take refuge.
I will take refuge in the shadow of your wings
   until the disaster has passed.
 2 I cry out to God Most High,
   to God, who vindicates me.
3 He sends from heaven and saves me,
   rebuking those who hotly pursue me—[c]
   God sends forth his love and his faithfulness.
 4 I am in the midst of lions;
   I am forced to dwell among ravenous beasts—
men whose teeth are spears and arrows,
   whose tongues are sharp swords.
 5 Be exalted, O God, above the heavens;
   let your glory be over all the earth.
 6 They spread a net for my feet—
   I was bowed down in distress.
They dug a pit in my path—
   but they have fallen into it themselves.
 7 My heart, O God, is steadfast,
   my heart is steadfast;
   I will sing and make music.
8 Awake, my soul!
   Awake, harp and lyre!
   I will awaken the dawn.
 9 I will praise you, Lord, among the nations;
   I will sing of you among the peoples.
10 For great is your love, reaching to the heavens;
   your faithfulness reaches to the skies.
 11 Be exalted, O God, above the heavens;
   let your glory be over all the earth.

Monday, February 6, 2012

My Apron





This is the first thing in my line of vision every morning.  It's my Grandma's apron.  She wore an apron every day of her life.  At least her life that I knew.

She would be a bit embarrassed that you can see some staining across the front and the fact that it is not ironed might get her "irish" up a little for she felt it was important to care for one's things.

But I love to look at it every day.

She was born in 1890.  She died in 1995.  I was at the tail end of her almost 30 grandchildren, and my oldest brother tells me that the rest of them "broke her in" - they tell tales of a sterner Grandma - I got the kinder, gentler one.

Maybe some things don't matter as much the older you get.  Maybe she mellowed with age and her walk with her God.  Maybe, and this is what I think, maybe she just felt a little more kinship with me because she was the one that I attached to when young.   My mother was busy with a lot of children and a new baby that was sick often; she had a large garden and was refurbishing an old farm house on a dime - but Grandma attached me to her side each morning, and we went about our "work". 

She stayed with us every winter of my growing up years - her house was big and drafty and my mother had invited her to "winter over" with us each year.  I think there were a lot of reasons hidden in that invitation, but I know the one I benefited from the most was that it was much nicer when Grandma was around.   

When I was really small and she would be peeling potatoes for supper sitting at our kitchen table, her chair was the one that I shadowed, the one that I hid behind, the one that could make me invisible when I needed it most in the late afternoon hours.  When it came time for bed, I was the only girl with my own room, so she got to sleep with me.  It was probably the most horrible sleeping arrangement of her life - but it was sweet rest for me.  I would snuggle up to her and it was good and warm and peaceful.

In some ways, she was a shelter and a shield for me a lot of years.

Every October I would start to beg my mother to mark a date on the calendar to "go get Grandma".  I would send Grandma a letter telling her to pack her suitcase, that I saw some snow flakes and she better be ready.  I would make sure the three drawers that were "hers" while she stayed with us were cleaned out.

My room always felt better when she was there.

When we would get to Grandma's house, no matter what my age, she would always grab my hand, look into my eyes and say "how are you, dear?"  We were not a "touchy" family.  I can count on one hand the times I was hugged growing up - and two of those times were when my favorite dog Spunky died.  But Grandma always touched me.  And looked at me.  And waited for an honest answer. 

She read to me every night.  At first it was one of the simple picture books you could pick up at the store for 79 cents named "Heidi".   Then as I started school, she had a hard copy of the book "Heidi" and a few pages of that would be our nightly portion.

To this day I still love children's books.  I re-read "Heidi" a couple of years ago and marveled at what an "empowering" girls book it was.  I held the book, read the words of a little lost girl who overcame great hurts and wondered at the gift and blessing my Grandmother gave me when she was reading that to me year after year.   

This was her unspoken message time after time whether through a children's book, or her "work" or her very life -- "no matter how bad it seems, persevere, persevere and keep moving"

My Grandma had the worst case of Rheumatoid Arthritis I have ever seen.  Her hands and fingers looked like a wretched zigzag - each segment going in a different direction at each joint.  Her toes were worse.  She hobbled when she walked and was limited in her movements.  Each morning, she ever so slowly came down each one of our 13 steps holding tight to the hand railing. 

I don't remember anyone ever calling her "crippled".  She just kept moving.

She read five pages in her Bible every day so she could read through it once a year.  Every year.  She didn't go to church - she couldn't climb the stairs - but she read her Bible every day.  She didn't talk about her faith a lot.  I'm not sure of her "insights" or her "words from God", she didn't talk about those things.

I am sure I saw her reading her Bible every day though.  And maybe her faith is a lot stronger than mine, because she didn't have a commentary.   She didn't have a concordance.  She didn't have "study" Bibles to "explain" all the things we don't understand.  She just read it and believed it for what it was - one Book, one Story, the Word of God.  If you don't understand it, you still read it.  Again and again.

She kept moving through it time after time.  I think God greatly blessed her for her faithfulness. 

Each one of her grandchildren has a hand stitched quilt made specially for them.  She baked and baked and baked and baked and knew everyone's favorite cookie.  When we would walk into Grandma's house I can still see the warm sugar cookies on her pull out work board - not frosted but sprinkled with a little bit of sugar and so good for dunking in a glass of milk.  

She baked more pies in her lifetime than most of Ohio has in the last ten years.  She felt the need to feed every person at the family reunion twice over.

She did all that with hands that wouldn't work the way she wanted them to anymore.  She did all that hobbling on hips that could barely move in the morning.  She did all of that going on 100 years of age.

When she died, being one of the youngest of her grandchildren, I did not expect anything from her household.  And to be honest, I thought she had given me far more than most already.  But I was surprised when nobody wanted her tin step back cupboard and I was so pleased when it was offered to me.

The day it arrived, everything was still in the cupboard drawers, just as she had left them.  Her little hammer that she had had for years was in the top drawer.  Some of her tin pie pans were in the bottom drawer.  In the middle drawer, some of her aprons and "oiled" dish towels that she used to cover her breads and cinnamon rolls were still there.  The aroma was still strong on them - it was Grandma's kitchen and I just sat and held them and smelled them and cried sweet tears of remembrance.

I put the towels in a plastic bag and for a long time took them out and smelled them every time I needed to improve my posture and stand up straighter; every time I needed to remember that one loved me and called me "dear"; every time I needed to remember that I was in a long heritage of those that can overcome almost any obstacle. 

So last month I intended to give that apron to one of my daughters for all those reasons and had washed it and hung it up there to dry.  It's still there.

I keep thinking of Grandma and know what she would say to me now:  first, a heartfelt "how are you, dear?" and then she would say "put your apron on, there's work out there you need to help with".......

She is proof that some people live more and give more in their last 35 years of life than some do their first 70.  She is proof that some of God's greatest blessings come in the most difficult of packages.

She is proof that no matter what may hinder you, you keep moving.  And her apron hanging up there reminds me how every day of her life no matter how much her pain she got out of bed, tied on her apron, read her bible and got to work.

That apron has probably rocked more babies, cooked more meals, baked more breads and cookies and cinnamon rolls - making others more happy than 14 of us put together. 

The aroma from her kitchen is gone from the fabric, but it's a proof I can touch and feel every morning.

Saturday, February 4, 2012

Back Home Again.....

 
Posted by Picasa

Hey, it's good to be back home again.

The long week is over.

We drove home in a veritable swirling snow storm. I71 was a slow mess.
But we kept sluggishly moving and the more we moved the more my body started to relax. The final few miles were beautiful snow covered roads with familiar fields and woods covered in a blanket of white, and my body just settled down inside my soul and smiled, knowing I was almost home.

We walked through the 4 inches of snow in our driveway, in through the door with Scott both carrying as much baggage as he could, and trying to guide my groggy body; and I walked upstairs, got undressed, got into my shower and just let the water wash over me and wash over me and wash over me, washing all the week off..... It felt so good to wash off what was still clinging to me from OSU and chemo and sickness and hair loss and try to return to "being" again.

I cried and cried - there was a well of tears inside me that demanded to be finally released. Scott peeked in to check on me and I told him I didn't want him to see me this way, still a little bloated from the steroids and pulling out handfuls of what is left of my hair, and he smiled and said "Babe, all you need is a comb and a little conditioner - I'll help you"..... We laughed - what man knows the word "conditioner"?? But he always knows the words I need to hear.

There are few things in life more humbling and more sweet than your husband drying your sore, mostly denuded head, and telling you "it looks just fine to me".....

He kicked all of our hospital smelling clothes to the basement to be washed later, and he set to work in the kitchen making me some food and prepared the couch for me to lay on, and he stroked my limp, weary body, and my almost hairless head and said "you are the most beautiful to me today".

Sometimes I am afraid to realize how much we mean to each other and how much we kind of "are" each other all through these years. I remember two years ago when he was being released from the Cleveland Clinic, and I was on I71 going north in a tremendous snow storm with most cars pulled off of I71 to wait it out, and I called him on my cell phone and told him I wasn't sure I could make it, and he said "I have to get out of here, Karen", and I made it.

He could barely make it into the house but I just remember him shuddering when he laid back on his bed; and he just held my hand for a long time.

I understand that so much better today. After you feel used up and empty and alone and sick, you have to return to your "home" - to the familiarity and sweetness and warmth of the one that loves you most here on earth.

There are "havens" and "refuges" that loved ones have set up for us and we are so grateful when we are there, but there is nothing like being home with the one that loves me and cares for me. The one that has worked to make a soft landing place for us, the "home" that is like no other. Maybe this is our "return" on our investment in this long marriage.

We are home for each other.


I feel these words so deeply tonight......

...."And oh, the time that I can lay this tired old body down
and feel your fingers feather soft up-on me
the kisses that I live for, the love that lights my way
the happiness that livin' with you brings me.

It's the sweetest thing I know of, just spending time with you
it's the little things that make a house a home.
Like a fire softly burning and supper on the stove.
And the light in your eyes that makes me warm

Hey, it's good to be back home again
Sometimes this old farm feels like a long lost friend
Yes, 'n, hey it's good to be back home again"




 
Posted by Picasa

Cinnamon Lake, Home Again.

Friday, February 3, 2012

My home for the last month


This is Greg, one of the guys that meets me with a big smile every morning and most times says "hey girl" and walks my "bracelet" with all my hospital info on it anyone can ever need to know about me with one little bar code..... but he walks it over to me while I am waiting, and sometimes he even puts a little *bling* on it for me. Then he says "your name Karen?" and laughs.





This is the sign that mocks me every time I walk into the Trial Phase One Lounge -- FREE COFFEE........



I'm not sure there are any other *oven-warmed-blankets* in the building....




Coach and I usually take the stairs (less germs)


I'm guessing Homer Simpson and I might both glow green when leaving....


These are the doors between the rest of the hospital and the trial lab rats that we are pretty sure are going to do me in even if I do survive the chemo....they have almost 'caught' me a few times....


Beyond these doors leave all vestiges of normalcy behind thee...



My anchor, my strength, my hope and help in times of need. My Jesus here on earth....

Good bye Ro!!

This is the last day that I will take the experimental drug Ro with my other chemo. At least that's what all these happy ladies are saying here at the last wing in the last hallway of Doan Hall.

Ro, dear fiendish friend, I will not be sad to see you go..... although your benefits may be a blessing the rest of my life. I'm glad to be done with you. For now.




I had a pretty bad crash yesterday - and they still somewhat sneak up on me - I was up yesterday Thursday morning - after chemo Wednesday, feeling good, walked into the back wing of our medical trial wing - smiling my *ITS SHORT DAY THURSDAY* smile, settle in to do the prerequisite blood draws and Ro pill; and then after we were sprung early, we decided to do what I had been putting off - stop to do a wig try on at the specialty boutique.... (THAT is something for a whole other blog event - trust me there are things about wigs that "full-disclosure-Richard-Simmons" never told....)

We then snuck into Old Navy - yes a STORE with lots and lots of other germy people in it and recycled germy air floating all about - but we had needs. So i walked in, complete with mask on, and when I explained to the kindly hip young sales rep exactly what I was needing - he.took.me.there. Oh glorious sales rack that I have not seen for 6 weeks - and it was such a good sale. Only Scott said it was a "she" - we decided gender neutral was some of the best sales care we could have imagined.

At least until *hairy-young-hippy guy moves into the next changing room and shazam! - my sales help had suddenly found someone more needy of "attentions" complete with sideways looks of admiration and arm taps. Sigh.

I stayed in the fitting room - nervously slathering on hand sanitizer by the palm fulls - passing out clothes until our best sales rep was suddenly overwhelmed by braun and beauty and changed allegiances immediately. (who am I to cough at cheap flirting and maybe love blooming???) I then passed them out to Scott and he was actually a dang good *finder* himself - if not as enthusiastic...

So anyway, I buy my button front henleys preparing for my upcoming port, and leave and by the time we get home to Kristi's, I am in crash mode.

Damn sneaky steroids......(I'm sorry - that's the nicest thing I can call them right now) They make me feel good then vacate my body with a smack down leaving a vacuum worthy of the outer vortex.

A big black frozen hole with no gravity.

I was shaky, emotional, shaky, cold, sick, shaky and Scott just once again put me into bed under like 36 blankets and plied me with water and juices.....And food.

Today I am kind of weak washed out tired, but the sun at least came up.

They plopped me in a bed with those wonderful oven*warmed*blankets and I am just taking it slowly and easily. And tanking up on lots of water.

They barely woke me up for the last 3 blood draws - imagine big open grin.

Thursday, February 2, 2012

and friends are friends forever........


In the early 1980s we met a couple named Chris & Diane. We loved them. I think they loved us. They were a transplant to our community having just graduated school and starting out life.

Scott & Chris met playing church league basketball. They introduced their wives and we invited them out to our little house that was half zoo, half neighborhood Kool-Aid kids spot, half mental facility (my poor 9th grade Algebra teacher would gasp at my fractions here...) and the "whole", was us just trying to understand life. Understand God. Understand evil, sin, blessing and fear.....

They came out to our place and I am pretty sure baby Scotty was a gooey mess when they picked him up and played with him. Kristi and Heidi were in awe -- they had on clean jeans and looked really young, successful and nice. They talked with the girls like they were family. The girls were smitten.

We loved them.

At least once a month they told us to save our pennies - that they were going to take us "someplace cool" in Columbus and have some good food. And they introduced us into the - make a solemn oohhhh sound with your lips here folks and click your teeth 3 times because this was not so 'church-accepted-cool' in the 80s, - but we were really into the *new* Christian rock music.

They introduced us to Keith Green, to Steve Camp, Petra, DeGarmo and Key. Taught us *head-bangers* how to worship with Sandy Patti. We went to every discounted, free or cheap concert advertised - and they were mostly in Columbus. They always drove. Every time.

Our kids loved them - Kristi and Heidi would play Barbies and they always said "say-like this is Chris and that is Diane" then they would go off in their Barbie car together and pick up people.

That's what they did - pick up people and love them and take them places. And become a friend that sticketh closer than a brother.

I remember I stopped in to their house the day the movers were way too quickly packing up their moving truck. There was nothing to say that we had not already said. We cried a little. My heart was rent in two.

They moved and have since lived all over the Midwest and South, moving with his job. When they left us it truly felt as if our shared garment of life had been ripped apart. We went for short weekends to their place - they came and stayed over at ours - which was very brave considering our son's early morning wake up antics at the time. He went through several phases - one was using his child-size compound bow, acting the stealthy apache complete with face paint, checking all over the house and whispering in your-dead-asleep-ear while it was just barely light enough outside cluing one into the fact that it might be 5:30am - but he would whisper such things in your ear as "there were enemies around"; or a cowboy or a soldier would suddenly appear - whatever 4 year old boys like to think up at 5am, while others sleep soundly in the early morning... one was his superman cape and it gravely appeared that there was a lot of saving to be done for everything in the whole wide world before 6am.

To have Superman suddenly jump on one's bed and declare that indeed the world was once again a safer place presented a challenge to any parental empathy and self control, let alone overnight guests.

But as years go, we were not so much in touch. I sent Diane this link just last December as I was trolling through some old songs - she and Chris sing and she has sung professionally, and they used to sing sometimes for our Bible Study and play their guitar, and this was the last song I remember them dong for us.



Diane had been a spiritual rock to me introducing me to things that I was not going to learn in Sunday School. She taught me the precepts of healing. She taught me a lot about believing when you pray. She taught me to loathe and hate evil but somehow to keep praying to God about it even when you don't feel like it. They know some of our deepest pains, deepest hurts. Chris was always such a gentleman and watching for people's hurts and trying to help do what he could to help heal them.

I'm not sure they have ever understood what their simple heartfelt giving meant to us way back then -- and now.

While I was dozing off my Benadryl injection today - and might I just say anytime you might be offered one of those, take it - and Scott was quietly sitting in the room trying to better his solitaire score - in walks Diane. And she brought along a powerful praying friend. For us. (and for the record, this lady knew her sanitizing techniques ;)

God is still teaching me about this *community* thing He thinks a lot about...... and using lots of others to get me there. I took them all on a "steroid-bounce
-walk" then we prayed and God has been ever so good to us today.

I didn't know that the unit would allow visitors other than drivers, and somehow Mary Poppins flew in with the sunshine and wind today and ministered to her old friends.



And friends are friends forever....... if the Lord's the Lord of them
And a friend will not say never,'Cause the welcome will not end
Though it's hard to let you go,In the Father's hands we know
That a lifetime's not too long
To live as friends



But we'll keep you close as always,It won't even seem you've gone
'Cause our hearts in big and small ways,Will keep the love that keeps us strong

These words mean as much to us now as they did then.......

And they mean so much because there are others that have woven in and out of our lives and the love that Jesus gives us is a "bonder" that only man can break.... When you can say out loud that there are those in your life that no matter the distance, no matter the times in between, no matter where they are spiritually, but when you meet them again the love grows deeper, it is truly one of the most miraculous things that God puts here on earth.

We were in a small group at a church one time and the leader was a gifted wood-worker. He brought in 20 small dowel rods that had been broken and then set and glued back together. He handed them out and said "this is what God does for us - where we are broken, He glues us and that weak spot once glued, cannot be broken again." And he was right - the stronger guys in the group could break the dowel rods again, but never in the same spot that the master woodworker had repaired them and made them whole again.

God has brought us into a lot of *community* over the years. We have been blessed at different times in our lives with deep, good friends. And as we have been placed in new groups of people so representing God's plan of community, I cannot say how good that is.

And I think that dowel rod goes both ways - in our latest house church in Matthew we learned that our relationship is both "vertical" with God - but also has to be "horizontal" with people - building community. Both broken bonds can and should be repaired or "healed" if you may. Because we have a lifetime to hurt and heal and break and bond, and when God puts ones in your lives that are "friends", but more than friends - they are eternal family, then get out the wood glue and keep them in unbreakable, bonded shape.....

And one more tangent I beg you -- when you put those vertical dowel rods (your relationship to God) and those horizontal dowel rods (your relationship with your spiritual family here on earth) and touch them in the middle - they become a symbol. The cross. The cross is not an easy thing to manage to begin with, but if we realize what God can do with His wood glue, it's kind of awesome.

That's why we can love and hug and cry with loved ones we haven't seen in a long time from far away. That's why we can sit in a wonderful house church with all kind of personalities and claim "bonding". That's why we can drink a glass of wine with those who are as close as brothers and sisters and feel the goodness that God gives to us - warmth, honesty, truth and love.

Our God is pretty awesome that way.

Love to all those that are walking this journey with us.

Wednesday, February 1, 2012

Quick Update - Back In!!!!!

Good News -- My doctor is back home, and I am back in treatment!!! My neutrophils responded nicely to me forcing calories and food down my throat this past week - resulting in me gaining two pounds making them much happier. (never in my life have I had to *work* at gaining two pounds....)

For those of you reading this chemo info that are a few steps behind me -- I had no idea how the whole idea of allowing chemo into my body affects so many different things. My nurses the last few weeks (and then this was almost verbatim confirmed by Nurse LeeAnn - my inside scooper) kept encouraging me to take my anti-nausea meds. They didn't realize they would have to define nausea for me.

When food is cooking and you have to walk away - that is a nausea trigger. When you are in a car and suddenly don't feel well, that is a nausea trigger. When your stomach just doesn't feel well - and I know this is a no-brainer but I needed tutored -that is a nausea trigger.

I wasn't taking my meds enough to stop the nausea so I was losing weight bit by bit, and that does nothing to help your white blood counts - especially neutrophils.

Plus, they said that the whole idea is to stop your brain from associating food with nausea because in two months your brain will be triggering you not to eat a lot of foods, making it much worse eating-wise and keeping your blood counts up.

Some people have been kind enough to share their own "secrets" to pumping up WBCs and drinking two glasses of orange juice a night was one - I did it. I had read a couple of places that beets and sour cherry juice helped - did that too. (thanks Scotty and Lee Ann for your research) There is nothing in the medical literature to prove this, but who knows.

We believe they came up most notably with a lot of prayer and the "finger of God".

I was at OSU today for over 10 hours, back tomorrow for hopefully a short day then a trip to the Stephanie Speilman Center after that; back at OSU on Friday all day and then a short day Saturday.

So I am especially watching good food intake along with taking my meds better and faster. And sleeping.

Thank you so much for your prayers - I think Scott was watching the window locks closely until I heard the news back.... (smile) We all had a little party and then the IV quickly went in.

(and Bill, thanks so much for the loan of "important equipment" - mucho, mucho gracious!!)