Scanxiety. Hold tight.

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Scanxiety……they say it’s the fear of scans after your cancer treatment or the fear of not what’s to come or what could be but, a reminder of where you were.  It’s a fear non the less.  One that is true and valid and warranted by illness and pain.  It’s not just cancer we are afraid of but the pain it has caused him.  It’s not death that will come by the disease, but how long will it take if it does?

This picture was taken before we knew what was really wrong with Adler.  He had been misdiagnosed and we didn’t know that yet.  He was being treated with heavy doses of steroids causing the bloating and weight gain.  It was all the knew to do for his pain.  No management of it then because they thought I was crazy.  No 4 year old could be in that much pain and that often.  I remember this night. I remember holding him in tears.  Both of us.  And we held on.  We held each other tightly while the pain took him over.  I had the music playing, incense lit and the bubbles handy.  My arsenal of distraction.  (We all still have them today).

It was awful.  It’s a memory I hate but it’s all part of it.  The memories, the present brought to you by todays BE PRESENT moments that were shaped by the past.  Yes, we have changed.  Yes, things have changed and for the most part, it’s all for the better.  The pain is better, not gone but, better and his cancer is stable and his other 2 potentially life threatening illnesses are basically in check.  Although, any one of them could rear it’s ugly head and take us all down.  I keep the puke bucket and bowl near by and his heating pad is still always on.  I have been sober one year and lost 55 lbs.  Aaron is a supervisor at his work now and I have resigned from my position and am now Adler’s full time caregiver.Adler is in kindergarten full time and almost done with this year.  So I guess things are pretty different yet all together familiar and current with our times. But every 90 days we go through this tiny hell of the dreaded but ever necessary MRI.

Yea, it’s only 90 days.  That isn’t much of a break in between.  It’s like you get settled and by that time, we have to get ready to go again.  It’s never easy yet become routine and we have it pretty much down to a science.  Packed and ready the day of and the Hilton people know us and we are a friendly face to them as they are to us.  My parents go up and stay in their apartment just down the street and we all congregate for the actual scan and the appointment with results the next day.  Adler has special requests for food and room service and hotel movies to pick from and we always pack his wheelchair to give him the option because well, a sedated MRI is a lot.  It’s 2.5 hours under.  Yea, he can catch a ride after that.  Ipad, 3DS with games, Legos and super heroes accompany us and he picks his special team of stuffed animals to go in the tube with him.  This time I am bringing essential oils to put in his mask for the scent instead of the bubble gum or cherry or strawberry they offer.  He said it’s unpleasant and he’d like something else.  So we’ll see if this is acceptable.  I have also arranged for a Child Life Specialist to be there with us to help us along.  They are distraction experts and a good friend to have with us.  This is his first MRI with out a port and it will be done a little differently.  Though he did have 3-4 pre port but that was 2 years ago and I mean come on, we are all way different now. He is scared.  We are scared. It’s the same but different.  This is also his 6 month post treatment MRI, so we are worried about tumor growth.  We always are but this time there’s no buffer of chemo there at all.  We are preparing for the worst but hoping for the best and that’s just keeping it real.  We are on edge and emotions are raw and sensitive.  I pity anyone who pisses us off, just saying!!  It’s not our fault either, we can’t help but be like this on these days.  No magic pill or drink to take it away or thoughts to drown out the fears.  I mean I do try and appreciate all distractions that can come in many forms (Xanax and sexy books and feel free to drop a hot pic on my Facebook news feed!)  And music, music is necessary here.

So I will hold him close tonight when we fall asleep together in that Chicago sound filled hotel room.  The sounds of the city and the lights shut out by the curtains drawn and the fluffy pillows propped for the best head position and my meds taken to ease me into dreams that I hope are pleasant and refreshing.  I have held him in his first moments of life and I have held him in near death when he was drowning in his own fluid on his brain and we didn’t know it.  I have held him for comfort from pain and fear and from sadness and anger from his disease.  I have held him for fun, picking him up and swinging him around and laughing and spinning until we are both dizzy.  We have laid on the bed at night and held each other and looked into each others eyes and he’s touched my cheek as I touch his and he likes to run his fingers through my hair because at one time he didn’t have any.  Those times I HOLD ONTO when I get like this.  I hold him in my mind.  Eye’s closed and take long deep breaths for the truth with come with a crawl or come swiftly and it matters not but what does is the time in between and how we spend it.  And we choose to spend it holding on and holding tight.  So ring the bells and walk the deck my son because the Captain is ready to set sail.

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