Sunday, November 1, 2015

Adventures in Brain Surgery

10:42am Saturday morning.  I'm walking down the hallway of the 6th floor inpatient rehab center.  Singing a song about ants.  Pushing my mother in a wheelchair.  

"The ants go marching one by one, hurrah, hurrah.  The ants go marching one by one, hurrah, hurrah."  My mother chimes in on the hurrahs.  We're walking around to the windows that overlook that small park.  "The ants go marching one by one and the little one stops to suck his thumb (she giggles), and they all go marching down, to the ground, where it does not rain, boom-boom-boom."  More singing along with the "booms".  

We keep walking, well, I keep walking, and in between more verses in which I try desperately to remember what the littlest ant is doing in the fourth line, we take breaks to look out hospital windows and at the paintings lining the hallways.  

Hey mom, what's in that painting?
I don't know.
Are these red flowers poppies?  I point.

At the farthest point in our stroll is a large 6-story curved window.  The view is impressive.  She peers down at a couple walking on the street below.  "They looks so small from here, like ants," I observe.  She looks around for more ant-people.

On the morning of October 15, my mother underwent a left craniotomy for a brain tumor biopsy.  The scans showed a large cherry-tomato sized tumor, growing bilaterally from the base of the brain, damaging the nerve responsible for facial sensation, including the inside of the mouth, and ocular function, which controls eye and eyelid movement.  What the tumor was impeding in functionality was also producing huge amounts of nerve pain.  Entwining itself around crucial nerves, the tumor itself was inoperable, but it was deemed important enough to possible treatment outcomes to risk surgery and biopsy the tumor.  

The surgery was complicated by the location of the tumor.  Imagine a space nearly dead center in your skull, surrounded by crucial parts of the brain.  Yep, that's where it was.  The language center of the brain was shifted over to remove a large chunk of tumor.  Now the brain has to recover from the trauma of being poked and moved around.  So here we are at rehab.  

My mother requires 24/7 care.  Medically she is fairly stable, but she cannot walk without assistance and is very weak.  Short term memory is nil.  Certain aspects of speech and cognition are not available.  The nerve damage affecting the use of her eyes has not gone away, so she has very limited vision.  

Through all of this she is mostly cheerful.  Her world revolves around meal times, therapy and needing to pee, which is announced suddenly and urgently.  She often uses a sing-song, small voice, and sometimes the best way to get her to vocalize is to sing songs.  Hence singing about ants as we walked.  

Her pleasures are simple.  A sympathy card is carefully read and admired.  She reads every part, even the designer mark on the back and the postmark on the envelope.  A new puzzle with flowers make her eyes big and wide.  She oohs and ahhs over the colors.  Tell her she has a visitor and she lights up, full of smiles.  She may not talk much, but she's always following the conversation, nodding here and there.  The essence of my mother is still there with her generous nature and usually good humor.

In rehab she gets three hours of therapy a day.  It includes use of the walker, strengthening, dexterity and balance. We get training too, how to help her move safely, use equipment, etc.  One session is dedicated to speech therapy, which is sometimes the most frustrating session for her.   

Losing a piece of my mother in this way was not something I expected going into the surgery.  The biopsy results confirmed breast cancer metastasis.  We can't consult with the medical or radiation oncologists until she has progressed further.  I don't know how I'm going to balance working with caring for my mom.  Even doing shifts with my dad, this is a full time job.  

And the neuralgia pain seems to be coming back.  Over the past three days, she has gone from no pain, an unexpected blessing of the biopsy, to needing pain intervention.  How this will affect her rehab and brain recover is too early to tell.  We're repeatedly told by staff that stimulation and activity are needed to improve function, but how to balance stimulation, rest AND pain is another unknown.  

Today is another day.  We've briefly ventured outside with the wheelchair to look at flowers.  Now we are watching tv (her request).  It's fun to watch her reactions to the commercials.  The Colonel was telling us about his chicken, that its finger lickin' good.  She smiles and nods, "Yep".

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