Every morning she wakes up between 4 am and 0930. Her sleep is not natural as pills determine the night or days slumber routine. Weight is something she cannot gain and although there would be some envious of this side effect it is anything but glamourous. Her eyes work somedays while others they are filled with a blurry focus similar to gazing through a plastic milk jug. Her breathing is labored at times and she needs oxygen throughout the day and night to help keep her lungs strong. Pain is everywhere and nowhere, moving from an arm or a nervous leg to her back, sides, head, teeth and eyes. Medication is everywhere, we have pill bottles around every corner (figure of speech) waiting to either empty or crack open in dire need. 23 little pills, swallowed three times a day. Each pill with a specific purpose, each pill supporting another as they cross paths within her tired system.
Each day is a new adventure, wandering from upstairs to down. There are moments of greatness! A trip to the basement, or a stroll to the tree outside, down the road. Muscles yearning for mass from not that long ago, arguing with her central nervous system over usage, proper form and desire. Prioritizing each need hoping it can guide her successfully towards a much needed strong finish.
The garden yearns for her touch, her flowers and fruit trees scream for attention! There is one big draft horse and its little Donkey friend who stare at the house wishing she could come out and play. Little do they know she stares right back?
Her teaching job calls to her as she misses each and every child who ever graced her classroom door. Their quirky attitudes, laughter and stories, making each day special in its own way. Instruction, knowledge sharing, testing, creating, and showing each child no matter their background that her classroom was always a safe place to be, a wonderful place to learn.
Friends come and go, happy to see their friend has made it to this place of reclusion. She moves about between the kitchen, living room and bedroom. Little stints in each area much like a 7th grader changing classes. Sitting just long enough to learn and appreciate either her surroundings or emotional moments shared between herself and her children. She laughs and loves to have endless conversation with her friends. She knows she will pay for it as with any two hour visit there is a three hour nap post get together with her pillow. But when she awakens she smiles, for a visit is something special when not more than three months ago there was talk of her not surviving.
She longs to be free. Free from this damn GVHD! Free from this home that has somewhat imprisoned her for hours on end. She longs to hop in the car and drive herself to the fabric store, feeling that independence so taken for granted not that long ago. Oh occasionally she spreads her wings and drives to a softball game, or over to the produce market. They are after all straight shots and if her eyes get to bad I am but a minute away. But it still isn’t the same.
The feeling of exhaustion from walking to the car, shortness of breath after lifting a couple bags or fruit, closing the cars hatch and finally sitting back behind the wheel. This is a mental war with her physical being that’s being fought and has escalated rapidly. There are times she wishes she could just tell herself to knock it off and get with the program! This runner, swimmer, biker mom who could out move most people on their best days now needs help just to get up the stairs. She is cooking dinner again and slowly starting to do laundry (because she wants too!). Anything to make her feel normal, like nothing has happened and life is just as it was or should be. She is sewing and drawing which are two things she very much enjoys. She is constantly trying her hardest to gain just a little more ground. No matter what that ground may be.
People constantly ask me how she is doing. My response is always the same.
No better, no worse, just one tough lady who is happy to be home.
Jacy survived chemotherapy, she survived remission, then recurrence; she survived chemotherapy once again and then watched with the strength of a thousand draft horses as a new immune system entered her body during a BMT transplant. She has survived every GvHD (Graft vs Host Disease) complication known to man and lived after putting her big girl panties on willfully accepting a new trial drug to combat her symptoms. Her doctors tell us each time we visit that we are in uncharted territory. She was not expected to survive but when asked what her thoughts were she said; I am not leaving my family! End of story! You can do what you want, but I am not leaving my kids or my husband.
And she hasn’t.
My wife has always been a fighter. She fought for our relationship in the beginning, she continually fights for our children; she fought for our daughter and fought for hundreds of children in Haiti. She fought this thing call Leukemia and now fights GvHD. She is currently fighting a bit of trapped in the house depression, along with an ability to hold onto hope for herself and her future. She fights against the elements, hoping one little organism isn’t out there with her name on it, waiting to attack! A nasty little bugger giving her something else to fight for with her back up against the ropes. She fights for herself and her need to succeed. She fights because that’s who she is and what she does well. She fights while keeping a patented Jacy smile affixed firmly upon her face.
She fights to come back to church, and pray.
She fights to have some semblance of her old life back.
She is my hero and that’s why I will always fight for her.