Thursday, October 28, 2010

The Chair

The following is what happens when you are a 37 year old woman with too many Ally McBeal reruns and not enough sleep---no employees or small animals were hurt in the writing of this fantasy.............

It's a Thursday (1:30 AM) Alli and I are in ICU--both very tossy-turny--both unable to sleep. I've given up the battle of sleep. I'm done- "put a fork in me."

But it seems unfair to declare defeat to the public when the battle has not been fully explained. How can you claim defeat when there has apparently been no fight to start with? Oh, but there has. Let's see...

Sunday night- Allison was admitted to the ICU at St. Jude to begin the first round of her antibody treatments. I jokingly noticed that my bed for the next 5 nights would be a large, very cumbersome, blue recliner in the corner of this small room. Now- if the recliner had been in proper working order- the thought came to mind that I might could make it. But since it wasn't- my battle cry began to wane..however, not wanting to put a damper on the already unsure days to come- I "Manned-up" take one for the team kind of attitude-ed it away!

First 24 hours without sleep aren't really that bad. Sleep is overrated- a statement you may hear me say more than once in this little story. It became comical to me. How could a place so dedicated to patient care have forgotten that in order for me - the parent - to participate with them in that care I might require a place to sleep- that was a tad more comfortable? A feeling of guilt came over me- It's St. Jude- they've gone above and beyond to help us- to give us back our child. The picture in my head was a cartoon where the King (St. Jude) comes by and throws out crumbs to the peasants...(I was a peasant) ...and we are SO grateful to get them that we lap them up never looking at them to see what they truly are............rotten broken pieces of a dilapidated recliner!!

After 48 hours of no sleep....it was hard to try and "man-up" and take one for the team or see the "King" in his good light. Daddy is staying here in Memphis and comes to sit with Alli so I can shower-but on his Tuesday visit- I decided to nap at the Grizzly house and he decided to take this opportunity to get my broken chair fixed. Why? Because that's what daddies do. They protect their daughters from things that go "bump" in the night, boys with bad intentions and unacceptable acts of torture by furniture!

I'm not quite sure how the conversation went but I'm sure there was a lot of ideas flying about the room of what was wrong with the chair and exactly how he would fix it before the maintenance fellow actually took the old blue chair away. And as with all things, when something leaves- something else usually arrives to take it's place. This was just the case on this particular Tuesday.

Upon my return to the hospital, my feet and spirit dragged up the elevator and down the hall way toward the room with the "blue chair" I heard a pounding in my head shouting- "NO--not back to the chair!!" Sounds of drums reminiscent of a beheading- But alas, when I entered the room it was the first thing I saw- beckoning- me from across the room. It's bright silver casters with locks on the bottom to indicate Red - for locked or Black - for unlocked. It sparkled so that I had to cover my eyes to guard against it's blinding radiance- It invited me to sit down in it's deep lap and to curl my feet up on this flat smooth surface. It's arms enveloped me with a feeling of familiarity; like I was made to sit in this chair and it had been vacant in it's purpose until I rested my posterior in it awaiting upholstery. I inhaled it's fragrance--it smelled like victory- it smelled like sleep.

I took a moment- gathered my composure, almost feeling embarrassed by the gratification my senses were enjoying, and thanked my father for all the wonderful things in life he had provided us. But mostly, at this moment, for the chair he had single handily acquired! "Oh-Father- there is none so great and powerful as you." I told him- Men will spend ages attempting to understand and emulate the father you are. (I must take pause here..the emotions are just too much!)..............

Thank you - It is here in our story that I would like to pause and say that there is a "Happily ever After" in the making but not just yet. After "Father" left, I sat and began to really get to know my new friend. Every inch of it's red leather, sparkled and begged "Please sit here." I was glad to oblige. But I no more had begun to enjoy it inviting comforts went to my shock I looked up at the door to see the maintenance guy with .........THE BLUE CHAIR!!!

I jumped up "What's this?" He walked by me- grabbed the RED chair and wheeled her out the door. Her arms reaching out to me- mother and child separated- lovers torn apart - childhood friends driving away holding onto that last rearview window gaze......I felt......despair..."what do I do?" --I acted quickly-- as he unloaded the BLUE immovable chair. No shiny metal casters for him. Just planked wood bottom to slide and scuff floors, splintering his victims as they sit. I said to him "Is is fixed?" SHOT---at that moment-- he went for his six-shooters. His eyes shut to a sly slit- he rested his navy blue pants in the BLUE chair--suddenly...he pulled the lever--preparing for relaxation and victory---he got...neither!!

I felt good- smug-- I laughed at his jammed lever- his gum-shoe hands and six shooter attitude. It was still broken. As he tucked his tail and BLUE chair was carted away--I reentered the room with a sigh of relief. This victory had been secured....all was well.

As night fell I gathered my things. It was at that moment that the most wonderful thing happened. The sleep that had eluded me for nearly 72 hours began to return to me. As the sun faded behind the horizon- my eyes too began to disappear behind a curtain of lids.

I awoke- feeling more refreshed than the days before- my outlook was bright- optimistic of the day to come! Breakfast was better- the eggs tasted more eggy- the bacon more bacony- the grits-more grit like--the coffee drank smoother--warmed me deeper- all was right. As I indulged my senses and wrapped my body in the warmth of the arms of the RED chair- there came a knock at the door.

I rose unwillingly from my euphoria and pulled back the curtain to reveal the glass door. There- I stared in shock-as screams- voices yelling "NO!!" - horror music played in my head- was THE BLUE CHAIR!!

I stammered as I watched...he walked past me...eggs, bacon and grits sputtering forth as I tried to understand - why? "It's fixed." He said - smuggly-- "WHY can't I keep this chair?" I asked- exasperated. "Because" he said "my job is to decide who gets what chairs, and I decide- you don't get this one." --There it is folks---plain and simple--He had bigger guns-- and more so--he had me by the guns.

I mean--what do you do in a situation like this? Sure, pictures of me falling on the floor being dragged away with the RED chair crossed my mind. I pictured my self standing on the deck of the Titanic saying "I'll never forget you," as he wheeled her away...........

In my disgust I returned to the room- emotionally wrought--wondering--will I ever see her again? What job was so important that she couldn't be mine? Is she alone tonight- wondering were are the rumps to warm her ample seat? I would like to tell you that there wasn't mourning but there was. We all felt it- even the nurses came by to check on me- to stare at the monstrosity of BLUE that had been left in the wake of RED magnificence.

The BLUE haunts me now- stealing my sleep- laughing creeks as I try to recline and he folds me up again and again. The jerk in his recline reminds me of the smooth glide of her lean. Never a bobble, just smooth- relaxed. His is forced- grouchy- old -irritated. And although he may have won this time; him and his master of navy blue pants, ruler of the recliners. Rules are made to change.....RED chairs were made to be loved...........I will find her........I will bring her back........I will rest again!!!

Wednesday, September 29, 2010

Barnabas---Son of Encouragment

Feeling a little down and confused I was pleasantly uplifted by my Bible study this morning. It was about Barnabas and how he was an "encouragement" to Paul. Barnabas' name was actually Joseph. But he was such an encourager to the disciples that they re-named him Barnabas!! That is SO COOL---

This made me reflect on the past 8 months of our "Cancer Journey." As I looked back I began to think of the over 155,000 people who have stopped by Alli's site, the people who have emailed us, sent packages/letters/donations, who have organized fundraisers. Those people who have taken the 6 hour treck to Memphis to see Alli, who have called just to pray with me on the phone and check on my mental state (which we know only had room for improvement-ha)

The PRAYER WARRIORS who have NEVER stopped praying!! (I have a special one who I chat with in wee hours of the morning....thank you my special friend!!)

Encouragers.........each and everyone of you out there have been a GREAT and FAITHFUL encouragement to me and my entire family!! .............you Barnabas' (is that correct grammar?)

I LOVE YOU!!!!!

As I close let me leave you with some words of Mrs. Beth Moore

"Dear Lord,
Open my eyes to new opportunities to encourage others daily. Help me to give people the courage to be the people YOU have called them to be................Help me to be................
AN ENCOURAGER!!"

Today, will you be the encourager or the discourager??? Jesus has called us to lift one another up...............

All my love and thanks to everyone out there....all 155,000 of you!

Paula

Tuesday, September 28, 2010

Little Orphan Annie...........by Rachel Mullan

This is a story told to me by Miss Rachel Mullan from Covington, LA. It is an old folk tale told to her by her mom many years ago................


Little orphan Annie has come to our house to stay
and wash the cups an saucers up and brush the crumbs away
and shoo the chickens off the porch and dust the hearth and sweep
and make the fire and bake the bread and earn her board and keep
and all of us other children when the supper things is done
We sits around the kitchen fire and has the mostest fun.

Alistening to the witch tales that Annie tells about
and the goblins will get ya' if you don't watch out!!

And once there was a little girl who would always laugh and grin
and make fun of everyone even her own blood and kin
and once when there was compnay and the old folks were there
she mock'em and she shocked'em an she said she didn't care
but just as she kicked her heel to turn and run and hide
there was two great big black things astanding by her side

and they snatched her through the ceiling before she knew what she's about
and the goblins will get ya' if you don't watch out!

And once there was a little boy who wouldn't say his prayers
and when he went to bed at night way way upstairs
his mama heard him holler an his daddy heard him ball
but when they pulled the covers down he wasn't there at all
and they seeked'em in the rafter room and chimney flew and press
an seek'em in the cubby hole and everywhere's I guess

but all they ever found was just his pants around about
an the goblins will get ya' if you don't watch out!

So little orphan Annie says when the blaze is blue and the lamp wick sputters
and the wind goes whoooooo and you hear the crickets crick
and the moon is gray and all the lightening bugs and dew is all squenched away

You better mind your parents and your teachers fine
and dear and cherish those that love you and dry the orphans tear
an help the poor and needy ones that clusters all about

or else...........the GOBLINS will get you if you DON'T WATCH OUT!!!!!

Wednesday, September 22, 2010

Cancer..........How I really feel

The following words were written during our stay on the BMT floor at St. Jude Childrens hospital during Aug. 2010...............these are the days I pray she never remembers.......

The wretched smell of chemo. The grotesque, colorful world of vomit- A thin naked body, bones laying in wait under the skin-waiting for muscles to wear away exposing their pointy surfaces, like faces under a mask--Panty hosed bandits with noses- smashed against skin the color of brown nylon fabric - (another affect of the chemo). another reminder of the drugs she must endure.

Limbs so tiny- its like holding the thinnest of glass. Her body convulses with dramatic bursts, as her insides erupt forward like burning lava--it burns as it passes upward past the open oozing sores of her throat and mouth.

The white thickness of their molten pores spilling into her mouth cluttering her voice with spittle. The harsh gagging sound of the suction- she puts it in her pursed lips- clears a path for air and voice.

As I hold her to me- vomit runs down my back and into my hair. She gently pushes my hair from my neck- so she can rest her face there- her favorite spot. A dark place-hidden from light and staring faces. A place of shelter from the maddening world of cancer.

Today she doesn't lift her face and smile and say "mama, you smell good." Today the only smells we smell are of cancer, chemo and stem cells.

They look like something from a sci-fi movie. Cush-sh-sh-sh the silver canister seems to say as it opens it's mouth; bringing forth the red frozen body parts. A popsicle of cells, stilled in growth ready...........as they are submerged in a warm bath- their frozen state begins to be replaced by the revival of life. Jellylike, they are ready to be returned to their donor.

As they are infused their odor is subtle. But gradually it becomes overwhelming- rusted tomatoes she begins to cry and get angry. As the tiny cells invade her taste buds-her lungs- her every pore. Even her now rapid breath reaks of the horrid smell of iron. Every cell now stained by the very thing meant to save her.

I'm so tired....tired of blood counts, masks, and everything cancer. I'm so tired of blood, vomit and crap.......My body and mind have aged millions of years- I see the stress on my face; I feel it in my body. The soul of my 5 year old is that of an elderly woman. My baby is no longer a baby- she is a survivor!

As I gently raise her from the tub she rests her body on mine and says "Mama, I'm sick." I just want to scream, to throw-up, to hit something or someone!! As she sits naked on the edge of the tub- holding my hand her spirit- that strongwilled spirit still shines through. "barking orders" telling me the 'correct way' to hold the vomit pail- still fragile- I am proud of her spirit of the fight in her. God please never let her lose her fight.

Those eyes- big, blue- from the moment she was born- Alli has always had the ability to stare right through you with them. A sea of bright blue that can charm, deceive and laugh- all at the same time.
But today there is no charm no laughter; that bright blue sea has turned to a black cauldron of nothingness. They stare at you but it is as if they have no soul. of all the things cancer has done; this is one of the worst. The blackness in her eyes is a reminder of the monster within..........

Dreaming..........

There are things that I will post here that I won't post on CB or FB because I feel like people who seek out this page are really seeking more of my thoughts than words and updates of Alli and cancer. This is my spot to speak my mind and not worry about updates and procedure but to rather just be me!

Not long ago I had a dream....I was in a horror movie. I was in an old abandon wood house with gaps in the wood sliding that allowed just enough light in to give it the dramatic feel of a hollywood horror movie. I was on my knees praying beside an old rusted iron bed-very well aware that something or someone was watching me- but I was not afraid.

As I rose from my knees I entered into a room that must have been the living room. Just then, up from the floor-bursting through- came satan!! He wasn't the red devil image of books and Halloween but a dreadful looking creature of gray-death like color. Long clawed nails, wings wide open, horns, gnashing teeth--horrible!! Then he reached out and grabbed my arm--and I FELT SOMETHING GRAB ME!! (I've never had a dream like that before) In my sleep I could feel something had a hold on me and I was wrestling with it. At that moment I looked into his face and said- without fear- "You have NO place here..get thee behind me!!!" I wasn't afraid--but I was mad. As I wrestled ot get my arm away from him I heard the most joyful sound..

Behind me to my left was the most beautiful white light. Within the light was singing and laughing..a voice of an angel. There behind me was Allison singing "Jesus..He can move the mountains...My GOD is mighty to save, He is mighty to save....." Along with her was my sister Amanda. I turned and was in complete peace that Alli was there with me...singing and knowing that Jesus is ever present. I looked right at the devil and started laughing.....I knew-(had a conscience thought) that I have no reason to be angry at you....YOU HAVE NO PLACE HERE!! At that moment I started laughing he disappeared like a puff of smoke and was replaced with the most beautiful field of flowers. Then I woke up! I wasn't upset or afraid...but at complete peace.

Do with that what you will..........I've NEVER had anything so real happen to me before in my life.
Paula

Tuesday, August 24, 2010

Just another day in........BMT

So today has been pretty uneventful--praise GOD! Alli woke up around 6:45 AM needing to potty and about to throw up. She was having a hissy-fit pointing and demanding the tissues and throw up pan; when right in the middle of all her drama she starts grunting, with a mouth full of spit. I said Alli you have to tell me what you want............she says, through the spit, "Nice shoes."

I said get up!! there is nothing wrong with you. Spit or swallow that spit!! GROSS-- After that she lay back down and decided to sleep a while longer. I, of course, couldn't go back to sleep and decided to grab some breakfast and get finished with some thank you notes I needed to write. Then I took them to the post office and ran up town to pick up mine and Doyle's Alli stickers for our trucks. They are perfect.

As of right now I am enjoying for handrolled sushi--complements of St. Jude cafeteria yummy..and Doyle picked up McDonalds on his way back from RMH.

It's funny that it's already 1:00 and I can't really account for where the day has gone. Hoping we are on our way out of here pretty soon!! We'll see what tomorrow brings............

Monday, August 23, 2010

Cancer

Just wondering...........why is cancer such a beast?? I had a stupid dream the other night about a big black bear trying to get me and the girls. She wasn't like snarling, foaming at the mouth but just climbing through the car. I am frantically trying to get the girls out of the car and into the house. But they are "lolly-gagging" around. Finally in the house and up the stairs the bear just keeps on coming; meandering along, but still after us. In the house she comes so out the window onto the deck we go..still dragging the girls who seem oblivious to the bear!!

So, Amanda looks up the significance of black bears in my dream on a Christian web site!! (OMG) She tells me that this stands for a fear of some sort. That it represents something I am afraid of. YOU THINK?? I don't know if I believe all that but I will say that it gave me some perspective.

I asked her "do you really think men like David and Abraham had NO FEAR?" She said " I think they had fear I just think they had more faith." Well, that makes sense. She and I looked at it like this.............while everyone else chose to stay in their tents, David chose to face his fear and step out in front of that giant with just a sling and a stone. Knowing that GOD was BIG ENOUGH to give him the courage he lacked to complete the task.

Amanda also stated that her pastor said something very profound this past week. "Death has a mortality rate of 100%" - Only one man has survived it and even HE had to be dead for 3 days!!

Anyway, I don't know what all this really means except that I have a new perspective on fear. First, the thing we fear most is the one thing that we can count on happening!! 100%! Secondly, we can either choose to live in fear of things or we can step out on faith knowing that GOD's plan can and will only be accomplished when we face the giants that loom before us.

.........personally......I choose to be a David!! So bring on the bears---I'm ready, willing and able to fight--with just my sling and a stone!

Tuesday, August 10, 2010

Monday, August 9, 2010

Good Morning,
Alli is trying to eat something and that is music to my ears. However, she is complaining of her throat hurting and her "booty" hurting which indicates that she is beginning to develop the muscositis. It's not bad and I am praying that this is the worst of it.

Her ANC is back to 700 today, Hemoglobin 7.7 and platelets ??? I don't know. Her liver enzymes were up yesterday but are looking better today and her other blood chemistry (Mg, K, etc..) are ok.

Today is her last day of chemo and then tomorrow is the "the day of rest." On Wednesday they will administer the stem cells and then.......we wait!!

This morning during my Bible study I came across this statement.
"Although there will always be some lingering influence of the flesh until we meet the Lord, we have no excuse for sin to continue to corrupt our lives..We have the resources of the Spirit of Christ within us to resist and put to death the deeds of the body, which result from living according to the flesh." ...John MacArthur.

......it made me realize that there will be moments, and have been moments, in Alli's journey that my flesh takes over and I am downtrodden and have feelings of no hope. However, it is the ongoing battle between flesh and spirit that causes these feelings to arise. In that realization I also know that when these times arise it is up to me to seek the counsel of the Holy Spirit and the Word of GOD to win the spiritual battle for Christ.

Today, as you face the daily routine of life where will you turn when spiritual warfare arises? Who's side will you choose to stand and fight on? Warfare comes in all shapes and sizes. For some it may be food, depression, gossip, lust...(whatever). But the thing to remember is that it is a daily battle and it is up to us to "put on our armor" DAILY and wage war against the powers of this world, all the time persuing the prize of heaven!!!

God's love and mine,
paula