The only image occurring while I was awake was of a spiky, barbed, glinting protective and angry Spool of Words. I worked hard my whole life to gain words and they were leaving me, wrapping into themselves on The Spool and holding tight. I am sure my face reflected my shock.
I wanted them back – though I could not recall the alphabet or how to utilize it. I knew I needed it to write my name – I couldn’t put the pieces together of why or how. The mechanics of words was scrabbling me hard as I became more and more unfamiliar with the ability to communicate as every minute went by. It was one of the most frightening moments of my life.
I vaguely made a connection between the alphabet on the Army-green band of every elementary classroom chalkboard in “the day” and an array of lines I found on the Internet. I was thinking I could pick out the ones I believed I could “draw” my name with and “trick” The Spool into giving me my words back.
I struggled to make my hand do what I intended and was scared at how the attempt taunted me. My “signature” beat its mean little heart out on the paper as a collection of the most awful little flower petals. Somewhere between bewilderment, frustration, disbelief, anger and fear I tried again. Looking down I saw more daisy petals – tighter, meaner. I put down the pen and walked to the living room, Boo by my side, gently bumping me to the couch to wait for my husband.
Somewhere in my quickly disappearing memory I realized this was my reality again though it was different. Whatever was happening was happening very fast. It was as if there were two of me – one stuck inside screaming and the one out there was silent.
On the third day and after the second treatment, my husband brought me home. I began to slowly digest what had just happened. There really is no place like home – at least to me. When I came in the door, Tonto wriggled and went small – she is so gentle with me. I was so happy to see a look of relief in her eyes and feel how her energy had shifted from when we left.
“C’mon Mom, let’s fight,” her warm brown eyes sunk into mine. Boo just does this so deeply. I squeezed her tight.
It was just so good to be home.
My husband is incredible. He works too many hours between two small businesses and now he handles even more. He talked extensively with Dr. K. about my recovery and was determined I was going to be better. He made up recall quizzes I could answer with one or several words. I re-learned my birthday, the year, telling time and other stuff we take for granted and then moved on for more.
It has come to light a permanent issue may not be numbers but the concept of numbers which is odd. Nearly every job I had – though I performed various chores, my main job was general manager/problem solver/and…bookkeeper. Once you add a letter to math I’m stumped, though if it involves organization and money, I’m your woman.
My friend Carol sent me puzzles and coloring books and crayons to work on my motor skills. Have you felt the “new” Crayon yet? Like everything “new” and “green” they are very odd feeling – both to the touch and in use. Anyhow, retaining my brain function even if I couldn’t speak or be totally coherent was SO pivotal in my recovery and still is. If I get too confused or get “lost” – (I am going to have to work hard on word collection to describe this new meaning I have for the word “lost”) – I get my Crayons out and color flowers and concentrate on nothing except each petal and each Crayola I select. It is very calming and helps me direct my thoughts to one singular pattern and I shamelessly color my way through the anxiety or confusion. I truly believe not allowing my brain to be dormant during treatment and initial recovery has a lot to do with where I am at this point.
I am sure more will come from The Spool and we will meet again – maybe for the last time. For now the words are “re-stocking” very quickly. I am walking well, talking, writing, drawing, coloring more intensely, making meals, working with Boo and even able to do some light gardening, housework and get out door.
Life is good right now and right now – is my time.
I am dealing with some depression/anxiousness from the medication – Dexamethasone – a steroid. If you ever have to take it or know someone who has to, please tell them to saddle up for the ride – it truly sucks – don’t tell them it’s going to be easy and fight through – tell them it’s going to be hard and fight if that is the decision they made. It’s pure and simple cure versus cause and a fight for time. Also, if you know a cancer patient simply LISTEN – and remember that most often times we want to hear what you (and your dog/s…) are doing and just feel normal.
Going on over two weeks of ending it after a month’s worth of the Dex I am still looking like the full moon in the face, complete with the black eyes and various other complaints though still being here and fairly functional is awesome.
Boo hopped up that first night and slept with me on the couch for a while. This is not something she normally does and when she does I feel so very special. I wanted this time with her before I got too sick from the radiation. I buried my hands in her ruff and felt the warmth of her soft and beautiful soul breathing with mine. She put her warm, sleepy, furry face next to me and sighed – being home with her and my husband gives me strength to fight again.
I want more.
Our future word-smithing will be some of our best. Tonto and me are coming for you, Spool, and we’re going to spin your ass until you are just a simple piece of white cardboard.