Written September 6, 2010 7:35 pm

Preliminary review of the results of the MRI performed on Sunday did not show any new lesion development or enhancement of existing lesions, which is positive.  The full MRI report will be available tomorrow.  The results of the MRI test together with spinal fluid test results (remaining results expected over the next days) will confirm if the steroid/plasmapherisis treatment program is having the desired effect.  The next treatment steps will be determined upon final review of these MRI and spinal fluid test results.  Anita watched some TV in the morning, visited briefly with family and rested for the remainder of the day.

There is an elephant in the room.  It has a long tube, like a trunk, attached to my trachea. The ventilator.  I give everyone and everything a nickname. Not this beast.  I wish I weren't so aware of it.  Frightening.  There are no words to fully describe a ventilator experience.  The air being forced into my lungs, keeping me alive, fills me with an angst, a terror I have never experienced before. The whooshing noise of the machine is not something that lures sleep.  It's a messy business.  There is suctioning that must be done often to keep my airway clear of mucous.  It's an arduous task performed by nurses or respiratory therapists.  The ventilator tube is removed and a sterile tube is pushed into my trachea causing a cough like gag, bringing up secretions, which are then suctioned out.  Nasty. The trachea itself houses a  plastic cannula that needs to be changed daily. This is not only scary, it's painful.  I'm not sure how it works.  I don't want to know.  I only write about it here, hoping I can wrap this memory up, tie it with a black bow and hide it in a corner of the attic.

Helpless.  Feeling a need to be suctioned to clear the airway.  It's the middle of the night.  No one is here.  I edge my right hand and stretch my fingers to find the call bell (a special pancake shaped device designed for those with limited dexterity).  "Can I help you?" Damn straight you can.  I can't talk, but I need some suctioning in here. Having a hard time breathing. "Can I help you?"  Another pause.  "Someone will be right there."  Each second seems like a minute, each minute, an eternity. Someone help me please.

I can't even cry.  I can't talk abut this to anyone but myself. The words roll around in my head like die in a cup. Thoughts start to form but they are suctioned out before they make a lot of sense. I stare at the Wash Hands sign for hours.  I wish I could scream.  I want the lights on.  I want the lights off.  Turn the TV off.  Change the channel.  Turn me. I'm not comfortable.  Can anyone hear me?  I'm scared. Really scared. I want to die.  I want to fight.  I need to fight. God help me. Please.  Keep me in this moment.  One second at a time.  That's all I can do right now....for just a little while.

Thanks for listening.