I am a week today, post transplant and I’m feeling good.
I am told that I’ve been cleared to leave my two door, negative pressure, isolation room and go workout in the PT/OT gym.
Even though I am still neutropenic they (Dr. Burt and Amy) think it will do me good and I’m set to be picked up at 1:00pm.
I am put on a gurney for the seven minute commute because the gym is in
another building and I put on a mask but not a gown or gloves.
I am wearing my new wig for the big adventure.
I am greeted by the OT that set this up, a very young girl named Sam, still in her twenties.
She proceeds to build a resting hand splint that requires some molding and a few adjustments but the end result is a brace I can slip on myself and give these curled fingers a much needed stretch.
Once she was done, I was wheeled back into the main hallway and left there.
I was wheeled around two other gurneys that held very sick looking men that were bald with many IV bags and no one beside them.
We were lined up against a wall and left to wait.
I was in a plastic gown at this point, one of the OT ‘s had handed it to me earlier in the splint building, for my protection and I still had on my mask and the wig.
All heat trappers and all very uncomfortable.
I had mentioned how hot it all made me during the visit but I knew it was a
necessary precaution so you just deal, right?
I am in the hallway very exposed, feeling incredibly vulnerable and slightly scared.
What happened to my gym visit?
Exercises and fun new skills that I could learn and bring back to the room and practice.
I’m in a hallway outside the 7th floor registration lobby and the receptionist is so sick co- workers are coming by checking on her and lamenting on how she looks and sounds so much worse! What?
Was that her blowing her nose?
Coughing and wiping her runny eyes?
I am outside her doorway without a door and here she comes by me to go to the restroom. WTF??? Her nose is so red it looks like an apple.
The OT that ordered me down there and then sent me out comes by, I ask her “how long will I be here?”, she taps the foot of my gurney and says ” maybe now would be a good time to work on my patience”
I had been out there at for ten minutes at that time and all she did was turn and walk away. Condescension is ugly at any age but frightfully so on her.
There were now just two of us waiting on gurneys and I asked both receptionist if they could call and give me a time estimate, I was told no.
Panic sets in slower than you would imagine here and I think it’s due to the
extreme heat I’m experiencing and the incredible out of body “Is this really
happening?” tape I’m now playing in my head.
I am being passed by Dr.’s in lab coats, nurses in scrubs, techs and family
members wandering around trying to kill some time.
People on their way to work and some on their way home.
Time passes and I lay there desperate to be back in my room, safe from germs and especially away from “Typhoid Mary” behind the reception desk.
I cannot believe this is happening! I start to cry.
Just silent tears that feel very hot making my mask damp and even more
I feel like a bag of trash. I am invisible and no one stops to help me or see me.
My eyes have undeniably been my most complimented feature my entire life.
Strangers comment on a regular basis and have since I was a child. I guess the color being a light greenish blue is off set by my dark hair and very dark thick eyelashes.
Weirdly enough my hair is my second most complimented feature and has been since I was a little girl. So, as I lay on this gurney without help or hope it occurs to me I’m bald and my eyelashes are so thinned out from the chemo they are all but invisible too.
My stranger stopping features are no longer part of me, I’ve been altered and it shows on the blank faces that pass me.
My eyes have a half closed look to them that the drugs have done, I look sleepy all the time.
It’s obvious I am out of place but no one stops to ask why I’m there or if I need anything or any help. I am invisible and ignored.
I tell a passing OT that I am not feeling well, she says she can get me a basin but never returns.
I am there thirty five more minutes before transport arrives.
He sees my tears. He asks if I’m all right.
He asks how long I’ve been out there.
He gets me to my room quickly and calls for my nurse.
I collapse in a chair and sob. I call Michael and sob.
I sit alone and sob.
I put the back of my hand in my mouth and muffle the sound, bite down on the pain.
I swallow the shame and disgust at myself for being sick and helpless.
I shake with rage at the people who were witnesses and did nothing.
I lash out at the hospital and fill out an incident report.
I lash out at the patient concierge.
I want it noted. I want it in ink. I want it to never happen again. To anyone,ever.
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