April 10:  Home Again, Home Again, Diggity Dig

Six months later, and my injured brain can’t get enough.  It is voracious for new experiences and new information, anything from running my first 5K to rewarding myself with a visit to the local library where I got two books by Oliver Sacks, the famous neurologist who passed away this year, and also the Art of Comforting by Val Walker, a topic I’ve always felt a natural propensity towards.  And, I’m once again excited about trying new foods and experimenting with unfamiliar recipes – including the Lion’s Mane mushroom, which apparently has neuroregenerative properties.  No wonder I was attracted to it!  My social worker said this renewed gusto for living is typical of people who have just survived life-threatening experiences – a result of their recent reminder that life is short, and meant to be lived fearlessly and fully.

One strange thing going on, though – I seem to start dreaming before I’m asleep.  The name for it is hypnogogia, and it’s hard to describe. Crazy but plausible scenarios pop up in my mind just before I’m unconscious, like Sean Connery being my father’s brother or something like that, and then my sensibilities interrupt and tell me “This isn’t real – wake up!”.  It’s kind of fun when the script is harmless, but sometimes it can be unsettling.  Very interesting since I’ve never experienced it before the surgery.

My follow up MRI went without incident, though I didn’t quite remember the experience as well as I thought.  The noises had been similarly industrial sounding, but I was still half-asleep during my first two as they had occurred at an ungodly time of day – one at midnight and one in the early morning after my surgery.  I did notice that each image had a different tone, and I pondered how their waveform would look on an oscilloscope.  Very Aphex Twins, I observed, or NIN.  This was sufficiently entertaining for about 45 minutes, then I found myself getting cranky and eager to get the hell out of there and in a quiet place.

And as I suspected, my follow ups with my oncologist and neurologist were uneventful.  MRI images revealed things were stable and unchanged since the surgery, and no radiation therapy would be necessary.   A yearly MRI was recommended, which I would most likely instigate on my end.  Whew!

Also did much better than I thought I would in the 5K I had signed up for.  It really does make a difference when you run with another person – I actually shaved off three minutes from my regular time!  Amazing what you can do when you have a goal and a rib dinner the night before.  And amazing where I am, six months after my brain surgery.  I was feeling quite alive as I sprinted hard toward the finish line.  I was loving the Universe for balancing itself in the positive this time around – it had been a long time coming.  High five, Universe!

This brings us to one of the highlights of my story – the part when I come home from the hospital.  Read on, and celebrate the highs and lows of my return!

The following morning, my mom and sister-in-law arrived sometime after breakfast to help me get ready for my release.  They were there and witnessed the following before my husband arrived to take me away.

First, Todd the occupational therapist had to deem me fit for release.  He was a bespectacled stout fellow, sporting a van dyke and looking like he’d be comfortable in a plaid flannel shirt over a Pixie’s t-shirt.  He took out a brand spankin’ new white therapy gait belt, still stiff from being unused, which he tied around my waist.  Then he instructed me to accompany him to the hallway for a preliminary stroll.  

My enthusiasm undermined me.  I went slowly at first, then got over confident and moved too fast resulting in me losing balance and almost taking a tumble onto the linoleum.  This made him a little skeptical as far as my release went.  We continued our way around the hallways, his hand a little tighter on the gait belt and as we approached my room, we were surprised to see about eight or nine doctory looking people in white lab coats.  They had stopped in front of my room and were all there to see me!

“Hello, there!” said the doctor in front, with a thick Nigerian accent.  “We are here from oncology doing our rounds and wanted to meet with you and see how you were doing.”  When he said “oncology”, I thought, in my inner Yosemite Sam voice that I reserved for such occasions, “Aw, no – ya ain’t comin’ for me, ya dang varmints!  Dr. G said it was benign so go on, git!”  But they all stood there, smiling, being awkwardly friendly and the Nigerian oncologist said “Here is my card. You make sure to visit us!”  I stood there, befuddled by it all and unable to speak my mind because I was still finding it difficult to talk.  I think it was Todd that finally moved me through their collective vulturous gaze and back to my bed where my mom and sister-in-law were equally puzzled at the presence of such a multitude of cancer doctors.

“Jeez!  It’s like the paparazzi!” Todd joked.”Ok, get rested and we’ll try it again.  Sometimes the first time up after surgery is too much at first.”  

I sat on the edge of my bed and recovered, then after a few minutes I was ready to go another round.  I did better the second time, moving decidedly slower and calmer, and avoided turning my head quickly.  As we made our way through the fairly busy hallway,  I told him a little about myself, how I was a musician and been active in the local music scene, and hoped to get back to playing as soon as I was recovered.  We talked about mutual shows we’d been to, which caught the ear of a male nurse as we passed.  I kept walking as a friendly discussion started between them about bands and music and concerts, Todd with his hand on the gait strap around my waist, me in my hospital gown attire moving like molasses, and the nurse attending to whatever he was doing.  It was a perfectly normal, pleasant moment in the neuroscience ward.

We returned to my room and I collapsed on my bed, exhausted but exultant.  “Good job,” said Todd.  “Now I feel better about signing your release.”  My mom rewarded him with one of the beanies she had knit for me, which he promptly put on his head.  “Thanks, it’s really warm!” he said, looking like either a member of U2 or an ex-convict.  I thought, well, I bet he didn’t expect a new hat when he came in to work today, and watched him leave, knowing we’d never cross paths again and hoping we had somehow given him some kind of job satisfaction that day.

Unfortunately, I wasn’t done with oncology yet.  An underling popped in to ask me a few questions, calling out my name before breaking through the privacy curtain.  He asked a few frightening things, which made me paranoid again that my tumor might be cancerous.  He talked about the possibility of it coming from somewhere else, doing another CT scan to make sure that hadn’t happened, and also the possibility of radiation therapy.  (Yipe!  Can’t you people leave me alone already?)

Then my neurosurgeon’s assistant came in to discuss my release, and upon hearing that I was visited by oncology once again stated quite adamantly that I had nothing to worry about.  It was quite a rollercoaster of emotions, which I knew wouldn’t end until we heard from pathology next week.  However, she said it with such certainty that it alleviated some of my fear, and I could get excited about leaving again.

She went over my release instructions.  

“No texting or television for 2 weeks.  If you’re going to watch TV, make sure it’s not mentally challenging.  Try something like American Idol or Judge Judy.”  Oh, boy. Those programs were perfect.  “And no Internet or computer anything, or any reading.”  

I guess they wanted to make sure my injured brain areas weren’t overstimulated in any way.   Sleep was encouraged, which I was delighted to hear. I did mourn the part about not getting on the Internet. What if I had a burning question to answer, like who played the second Darrin in Bewitched? But then again, it would be nice to be unplugged for awhile.  I looked forward to experiencing quiet, both within and outside of my mind.

A very nice male nurse named John facilitated my release, and made sure I had all my papers together and any extra equipment to help with my recovery.  A wheelchair was sent for. Meanwhile, the real oncologist who had been assigned to me came just after my husband had arrived, and he gave us instructions to follow up with him as far as further treatment – whether it had been decided that I should have radiation treatment or not to get rid of what was left of the tumor.  He had a more agreeable bedside manner than his underling and was not so gung-ho about getting a CT scan, which was great to hear as I was really tired of getting scanned by anything by then.  

This was my first experience with multiple doctors being involved – no one seemed to have their story straight.  It was much like the experience my father had before he passed away.  I came to the conclusion that doctors are just trained to make educated guesses, and the rest was luck and good genes.

Finally, FINALLY it was time to go.  I had my release papers, my instructions, my flowers and cards, and any clothes that had been brought from home.  I bid the neuroscience ward farewell and thanked John for all his help.  My mom and sister-in-law wheeled me down to the main floor where my husband was getting the car, bringing me close enough to the doors to feel the warm breeze that was wafting through.  It was all very alien and strange, but I was quietly blissing out. Though I had stayed in the hospital less than a week, I had gone through so much.  I was also unsurprisingly having difficulty processing everything that was coming at me – the interior of the car as I was assisted in, the passing scenery as it whipped by.  I had to close my eyes, as it was all very overwhelming.  Everything seemed a strange yellowy, 70’s Polaroid color, and all the smells were strong but not compared to the sounds that were close to impossible to take in.  We drove in silence, as the radio was too much for me.

We turned into our street, and I stared at the houses, alien yet familiar, like coming back after a long vacation.  We pulled into our driveway, and I hopped out of the van and walked with assistance up to the side entrance.   I’m home, I thought, standing in front of the doorway back to my life.  I’m home!

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