Written September 7, 2010 9:06 pm

A conference was held with the Attending Neurologist this morning.  His diagnosis is that Anita is suffering from a case of Acute Disseminated Encephalomyelitis (ADEM), underlying cause unknown.  The report of the MRI performed on Sunday did not show any new lesion development or enhancement of existing lesions.  We are still awaiting the Myelin Basic Protein  (MBP) level results from the spinal fluid test, which will take another few days.  As previously noted, the results of the MRI test together with spinal fluid test results will confirm if the steroid/plasmapherisis treatment program has had/is having the desired effect.  Next treatment steps will be determined upon receipt of  Myelin Basic Protein (MBP) level results, i.e. continued high levels (indicating continued demyelinating activity) may require further drug treatment program (Cytoxan), lowered levels may result in continuation of the steroid treatment program to reduce lesion inflammation.  The tracheotomy bulb was temporarily adjusted today to check Anita's vocal chords, ability to speak, which proved positive, albeit her voice was somewhat weak/hoarse.  Anita's condition was also considered stable enough to move her from the Intensive care Unit (ICU) to a "Step Down" unit in the main hospital.  Anita visited briefly with family members in the afternoon and watched some TV in the morning and the evening, while resting for the rest of the day.

Communication. My Undergrad Degree is in Comm Arts.  I remember one of my professors talking about the complexity of speech.  The anatomy of the spoken word.  He got my attention when he orated, "Can you imagine eating spaghetti without your lips?" I would like to tag onto his lecture, Can you imagine a head full of thoughts, concerns, wishes, ideas straining to be heard, looking for a way out, but finding none. My lips work fine, but lip reading provides limited communication at best.

"We're going to adjust the bulb on your trach to check your vocal chords .  They may have suffered some trauma, so don't be alarmed if you can't speak." That scared me.  I already couldn't breathe or move on my own.  Now they were telling me I may not be able to talk.  Really?  John, the Respiratory Therapist and a few doctors were in the room when the kind therapist gently adjusted the tube coming out of my neck.  She has been my best cheerleader.  Always positive.  Always encouraging. "Try to say something."  I did.  "She sounds like Lauren Bacall!"  She was as happy as I was. I laughed.  I don't recall what I said, but I was relieved.  Grateful to have a voice. Talking was exhausting and the bulb was quickly adjusted back to its original position.  I was told it would be lowered periodically to allow me to talk.  Until then, I must corral my thoughts and pick and choose which ones get voiced.  Something else to do while I lie here.  Think of what to say first.  Now...for just a little while.

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.

Written September 5, 2010  10:05 pm

The first results from the spinal fluid tests showed a decrease in White Cell count and Protein levels as compared to earlier spinal fluid tests.  These results together with a slight neurological improvement (i.e. strengthening in right arm, slight movement in left shoulder) was seen as positive by the Medical Team, and could indicate that antibody demyelinating activity (i.e. lesion development/enhancement) has ceased.  An MRI test was performed in the afternoon, of which results will be available tomorrow.  The results of the MRI test, together with spinal fluid test results (remaining results expected over the next two (2) days) will confirm if the steroid/plasmapherisis treatment program is having the desired effect.  The next treatment steps will be determined upon review of these MRI and spinal fluid test results.  Anita visited with family during the morning, but was quite tired in the afternoon after the MRI test and rested for the remainder of the day.

 In the dream I am walking barefoot across a meadow.  I have on long jeans and the cuffs tickle the tops of my feet as I climb the small hills in front of me.  Pebbles, like glass, dig into the soles of my feet.  Each stride causes pain.  I am late for something and as I run across the meadow I am keenly aware of the contrast between the cool, green grass and the hard dusty patches under my toes.  I call these my rock dreams.  I have them quite often. Always in a different location, yet each elicits the same feeling of walking barefoot. Each step causes a knee jerk of pain, walking like a chicken pecking at its feed.  I actually enjoy the dreams.  In them I can feel my feet, see myself upright and walking.  They give me hope.

Walking was my favorite activity before this illness.  Every morning, rain or shine, I would hook Trudy to her leash (after she pawed me at least 10 times during my first cup of coffee) and take off.  Nature was my muse.  I noticed everything.  Hawk feathers on the ground.  Through the fog, I heard the geese honking before they lowered their feet, skimming across the pond, causing a small wake.  Frost patterns, like icing, spread across the wooden slats on the bridges and on the edges of the path. Pieces of driftwood by the stream that ended up in my pocket if they were small enough.  Trees. Rocks.  A heron wading patiently through the water, searching for food.  I saw an owl once, resting in the hollow of a tree.  We gazed into each other's eyes.  It was a haunting experience.  I left it feeling like I had witnessed something I wasn't supposed to see.

Each day was different.  We didn't always go the same way.  We fought the wind, Trudy's ears flipping back, me pulling my hood up.  Other times, the rain would catch us by surprise.  Trudy would walk a few steps and shake the wetness from her fur.  I hunched my shoulders up to my ears, as if that would stop the rain from soaking me.  Walking in nature was how I cleared my head.  Nourished my soul.  Now I just have to visualize it, remember it, long for it.  Dream about it.  Now...for just a little while.

Written September 4, 2010  9:16 pm

A spinal tap procedure was performed this morning to obtain spinal fluid for various tests to check if the steroid/plasmapherisis treatment program is having the desired effect.  Results of these tests will be forthcoming over the next 2-3 days.  Anita also had a blood transfusion, due to low hemoglobin levels, considered a probable consequence of the plasmapherisis procedure.  Anita was quiet tired thereafter and rested for the remainder of the day.  The current plan is to continue with the daily steroid program, cease (or postpone) the plasmapherisis procedures, review the spinal fluid test results (next 2-3 days) and determine next steps at that juncture.

Spinal Tap.  It's not just the name of a band.  Having several residents perform this procedure while side lying in bed, tangled in ventilator tubes is anything but pleasant.  I felt no pain, but the position was getting more and more uncomfortable with each, "Are you ok Mrs. Crean?" and "Sorry this is taking so long."  The thought of a long needle being inserted into the spine to retrieve fluid is daunting.  So....be mindful. Try to think about puppies and marshmallows.  I remember mouthing "help me" to John who was sitting in a chair facing me.  He just looked stressed and helpless.

Tests.  I sure do have a lot of them.  These procedures break up the monotony  of a hospital day.  Not something that is always welcome on the agenda, but they do take time.  I remember hoping and praying that I would pass all these tests.  I prayed that I would advance my way out of this bed and onto Rehab.  But I stayed here.  Now...for just a little while.

Written September 3, 2010  7:56 pm

The third plasmapherisis procedure was performed this morning, according to plan.  Anita was quite tired thereafter and rested for the remainder of the day, while briefly visiting with family members.  The current plan is to continue with the daily steroid program plus two (2) more plasmapherisis procedures on Sunday and Tuesday.  Further tests will be performed at that point.

"Happiness, not in another place, but this place...not for another hour, but this hour."  Walt Whitman

Mindfulness.  Living in the moment.  I remember learning how to mindfully eat a raisin at an OT continuing education class.  Pay attention to the wrinkly, tough exterior of the fruit rolling over the tongue, slowly softening to a gummy sweetness that sticks to the teeth.  Mindful raisin eating takes time.  There is no shortage of time when lying in a hospital bed  with no ability to move, talk or breathe on my own. Worry worms its way into my thoughts trying to fill up time and space. I know I need to chase it away.  Think good thoughts.  I am keenly aware of the sound of the ventilator, the noises in the hall, the sound of helicopters landing on the roof, the light that moves across the sheets at night when my door is opened. But these are hospital sights and sounds. Not good mindfulness fodder.

So my happiness/mindfulness comes in snippets and brief moments of insight.  A quick peak into the deep blue eyes of my husband.  The eyes that have seen me through many moments.  The touch of his hand on my cheek that anchors me to the present.  The familiar sound of my son's keys jingling from his belt loop as he strolls into my room. It reminds me that there is life outside these walls and for that I am grateful. The clean fresh scent of my favorite hand lotion that the nurses rub onto my skin disguises the hospital smell for just a little while. Sometimes I spy the moon from my window.  I find hope and magic in the moon.  I gaze upon it until sleep steals me away.

The human spirit is amazing. There are instances when I feel an incredible inner peace, full of hope and serenity.  I visualize walking in the woods with my dog, sure footed, over mossy rocks, breathing in the scents of composting wood and leaves, listening to the flowing stream that follows us, and feeling a damp breeze across my face.  I can't wait for that moment.  But I must be mindful of my current blessings.  My family, my friends and my faith to help me through.  Now...for just a little while.

Written September 2, 2010 8:06 pm

Anita got a good night's sleep and was quite alert today.  She watched "Good Morning America" in the morning and some "Soaps" in the afternoon.  She visited with family members for short periods in the afternoon and rested for the remainder of the day.  The plasmapherisis procedure/program will resume tomorrow morning.  We remain hopeful that the combination of this procedure and steroid treatment will set her on the path to recovery.

Today is my oldest son's 18th birthday.  He wants a tattoo for his gift.  I decided I should get one too, as I am curious and I love new experiences.  We didn't have an appointment.  I don't even know what I want inked or where.  Who knows if we really would have gone or not.  But I can't go.  I am stuck here.  All that I am missing is starting to sink in.  The final leg of the Eagle Scout journey, Senior pictures, college applications, tattoos.  And with my younger son, exploring photography, bands, music, girls. I want to be there to tell them it will be OK.  Tell them to take opportunities, seek the new and embrace the old.  Savor the moments.  Take nothing for granted.  I want to tell them I will be OK.  Wait for me. But I can't even talk to them. 

So I reflect on my own life.  I have been so fortunate.  I've experienced more than some, but surely less than some too.  I never climbed Everest, will never become a Saint for good deeds done, but I have lived. And I have tried.  I was an actress, a mime, a clown.  I went to clown church once.  I've been in the circus, on the radio and on TV.  I was even on the cover of a magazine once.  I rescued a one legged duck from mud that tried to suck me in like quicksand, only to finally reach the stricken fowl and watch him fly away.  I helped a veterinarian do surgery on an elderly lady's dog who had just been hit by a car.  I accompanied a friend to the morgue, and while she harvested the eyes of a twenty something year old tragedy, I sat in the front office and studied his belongings.  A watch, wallet and glasses sitting on the desk.  Not much to create a life story out of.

I was arrested once.  I drove cross country with a friend, but never made it to California.  Colorado was just to beautiful to leave.  I rode in a hot air balloon, kissed the Blarney Stone, did the Titanic pose on the front of a Fondue boat in Switzerland. I have loved and been loved and I have had the privilege to be acquainted with some incredible folks.   I flew an airplane once, hitched a ride once and rode a motorcycle once.  Some things need only be experienced once to leave a lasting impression.  But I'm not done.  I have many more people to meet and much more to do.  And how about that tattoo?  But I can't think about that.  Now.....for just a little while.

Written September 1, 2010

The second plasmapherisis procedure ("blood filtering", removal of antibodies from plasma) was performed this morning, again taking approx. two (2) hours according to plan.  The next plasmapherisis procedure will be on Friday morning.  The steroid treatment continued today with twice daily dosages.  Anita rested during the afternoon, meeting with family members and watching some "Soaps" intermittently.

Soaps. A constant.  A familiar.  A normal.  I've been watching General Hospital (GH) off and on since Middle School.  It's my guilty pleasure, my secret, that until now, was rarely shared.  But catching up on GH while in Neuro ICU was helpful on so many levels.  It brought a sense of familiarity and peace watching my old Soap friends.  My brain was working.  Despite my inability to hold onto a thought, I could recall the storyline, problem solve to catch up and predict the future ordeals that would befall the citizens of Port Charles.  Viewing GH gave me something to do, an appointment each day.  There was something else in the room  to take the focus off me.  Visitors could watch too or just watch me watch. It gave folks something to talk about with me, although I'm not sure my visitors understood this clandestine Soap Queen side of me.

Being mute made visitations awkward.  I tried to talk with my eyes, nodding my head, mouthing words.  Forming voiceless words is frustrating for the talker and the listener. I'm sure that's why babies cry. At least tears will get them soothing words and hugs.  I just got vacant looks or sad eyes.  Communication is extremely difficult when even gesturing is impossible.  John was the best at figuring out what I wanted or needed, but even he failed at times.  We had a notebook and if he held it at just the right angle I could scribble a few letters with my right hand, but they were mostly illegible.

My dear friend who works in Rehab became my communication champion. My advocate.  She captured any staff person with a name badge who entered my room and spoke adamantly about my need to talk and communicate with my kids, my friends, my family.  I will be forever grateful to her for fighting for me.  She new that my speaking was possible.  I was full of questions and wanted to be a part of conversations. But for today, I just watched my Soap, where I could talk to the characters in my head, dolling out advice and offering opinions on their lives, to forget about mine.  Now....for just a little while.