April 10: Home Again, Home Again, Diggety Dig, Part Two

In my last session with my social worker, I described the uneasy feeling that overcame me whenever I came upon a certain patch of tree shadows during our nightly walks.  From a distance they were harmless and unremarkable, but as we approached and our angle under the streetlights shifted, they morphed into something alien and menacing. My steps would become apprehensive and I would cling more tightly to my husband’s arm, the anxiety quickly escalating as we got closer then disappearing altogether once we crossed into safer territory.

She said a physical therapist would give me advice about vestibular issues, which I seemed to have been plagued with as I had mentioned balance problems before.  She suggested I look at a stable, vertical object such as a house,  and not at my feet where the evil shadows were.  Which actually made sense – I would try that instead of avoiding the street or being guided to safety, eyes tightly closed, being guided by my husband’s voice.  Sure it was cute hanging on to him like that,  but also it made me feel like a blind person being assisted across a busy intersection.  I vowed to take her advice and conquer this new fear, like everything else that had been an issue since my brain surgery.

Was this really the last thing I had to deal with?  I had run out of incidents happening out of nowhere, and I was feeling quite confident about my general well being and ability to cope with life.  She seemed to read my mind and asked if I had thought about stopping.  I said I had, which was true. I didn’t feel the therapy was necessary in my current state, which as previously mentioned was as close to normal as it had ever been since this whole affair.

We both agreed it was the right time, and so it ended up being my last session with this wonderful woman who had helped me get through the mysteries of my recovery.  I was truly grateful for her advice and guidance, and so glad I swallowed my pride and put myself in the hands of another person more experienced with head traumas.  Somehow through the magic of emotional intelligence she understood my intentions, and all my damaged brain attempts at explaining things. It was so rare to meet someone like that, who could just figure you out with minimal effort on your part.  It was a very comfortable relationship we had, and so I wasn’t surprised that she picked up on my contemplations regarding ending my sessions.

I wasn’t scaring her, as she put it, and she was totally comfortable with me taking the wheel and driving the rest of the way on my road to recovery.  She also mentioned that some people taper their sessions off, or stop for a while and come back when they need a “tune-up”.  I said I was fine  with ending things immediately, and so she agreed to give me a discharge from her services. Fortunately, this was towards the end of our time so we wrapped it up by expressing our mutual fondness for each other, and she gave me a hug and wished me good luck.  

Or parting was a little bittersweet.  I had come to look forward to our Wednesday sessions, describing new neurological oddities I was puzzled or upset about, and getting some kind of plausible explanation from her.  I could tell she enjoyed her job,and I found this inspiring. She was damn good at it.  But she was a comfort that I would no longer have, because now I would have no one to talk to about my brain surgery that would really understand things from my point of view.  I had gone to group therapy and found it a little wanting, as no one there had my specific head trauma and I really just wanted to find someone – anyone – who had also undergone a craniotomy.  So despite the fact that we all shared similar experiences, I just couldn’t connect, though perhaps I should have given it more time.  Plus there was 11-14 people in the room, which was far too many for an introvert like me to be comfortable communicating with.

Therefore, I felt a little panic as I drove away, wondering if maybe I had made the right decision to stop.  Or maybe it really was time for me to move on and this would all become an unpleasant memory, soon to be forgotten by the gentle erosive fingers of time.  Even now, certain details and timelines are lost that I swore I’d never forget, but you know – life happens.  And some things need to get tossed to the side to lighten the load.

I walked carefully up the stairs, steadying myself on the railing.  I headed straight for our bedroom, holding on to the walls until I laid down. I was feeling light-headed from the medications and still a little unsteady.  

“I’ve hidden your laptop, just in case you get any ideas,” he said. Oh, he knew me so well.  I’m sure he thought if he hadn’t taken this action I would defy my doctor’s strict instructions and peek at my Facebook once he left. 

“Will you be okay?” I detected a hint of worry in his voice. He had to leave for a round of afternoon meetings, which I knew he was hesitant to do.

“I’ll be fine.  I’m just going to sleep now, I think.” The doctor had said sleep would encourage healing so I was keen to get on with it. He kissed me on the head, and left.  I laid there, in the quiet of the sunny early afternoon, grateful to be back in my own bed.  The comforter was comforting,the air was clean and free of hospital smells. But something wasn’t quite right.  I felt an odd crookedness laying there, like I was being tipped backward. I checked my position and there was nothing wrong – nothing had changed in the mattress.  Weird, I thought.  

Octavia, my darling little ragdoll cat, had been observing from a distance when I came in.  I had been gone for quite a while by cat reckoning, and she sensed something wasn’t quite right with me.  When she jumped up on the bed, she sat a little distance from me, observing, processing.  Just looking at me, as the silence grew around us, human and cat.  Was she going to come up to my face like she usually did, and give me a playful nip on the cheek or eyebrow?  I was actually terrified that she would, because I didn’t have the strength to deal with it.

She seemed to come to a decision and simply laid down, not too far away from me. I drowsed for a bit, then when I woke up she was still there.  She had concluded that I was wounded, and that needed to be respected.  Perhaps the white gauze taped over my six inch suture was her first clue, but I’m sure my smell and body chemicals were all different to her now.  

We slept.

A little later, I was wide awake and the sun was shining, diluted but cheerful through the blinds. I still felt crooked and wondered if I should just keep lying there (um, yes) or do something. I looked at my cell phone, and thought, oh, what the hell.  Just a few seconds. Just a quick peek at my Facebook to see what everyone was saying about me.

I ended up checking my Facebook (something close to 300 Likes from my husband’s last update, which was astounding and some touching messages) looking briefly at my emails from work (they had started attempts to survive without me) and a quick look at some texts that had been sent since I went under the bone saw.  I don’t know how long I took doing this, but it didn’t feel like any more than maybe five or ten minutes.  I wondered what the big deal was about not looking at my phone or the internet, as nothing serious happened after I put the phone back down.

My husband came home and commenced making the best pork chops I had ever had.  Maybe it was the fact that it was the first non-hospital food I’d eaten for a while or maybe he’d finally gotten the hang of cooking without my guidance, but they were perfectly seasoned and barbecued to juicy perfection.  I hadn’t felt hungry until I took a bite, and then I was suddenly RAVENOUS.  I ate off a breakfast tray as we decided to wait until the next day before I moved into the dining room. My husband was so pleased with my appetite which thankfully hadn’t been affected, and brought me sliced apples with honey drizzled on top for dessert.   Each bite was perfectly sweet and crunchy, and the honey was a bonus parade in my mouth.  I’d never eaten anything so wonderful, it seemed.  Flavors and textures were insanely and blissfully magnified.

With all that sleeping during the day, I thought it would be difficult to sleep through the night, but I had faith that my Norco and Keppra would put me out about a half hour after taking them.  My husband came in with a glass of juice for my pills, and as I sat up to take them I suddenly got incredibly nauseous and faint.  I broke out in a cold sweat and felt like I was going to pass out if I hadn’t lain back on the bed.  It scared me how it had come on so fast, and I tried to figure out what could have caused it.  Maybe I ate too quickly?  Or maybe I shouldn’t have disobeyed my doctor’s instructions to not look at my phone or any internet.  Obviously my brain really wasn’t ready to be that stimulated yet.  The overstimulation must have made my body behave in this manner – it was frightening how quickly I had gone from normal to almost losing unconsciousness, which I had never experienced before. I didn’t tell my husband that I had disobeyed instructions earlier, as he would have been quite upset with me.  After this, I vowed to follow doctor’s orders until I saw my neurosurgeon again in two weeks.  

I asked for a cold washcloth for my forehead, which eventually calmed my nausea and took care of the cold sweats.  Back to being excited about tomorrow. More sleeping, eating, maybe even a real shower (Huzzah!).  Also my nephew’s hairstylist wife had offered to shave my head to match the incision area, or at least cut my hair close enough to ensure that all areas were reasonable close to the same starting point.  I actually had planned on cutting it in a pixie style that Saturday, but of course I had to cancel that appointment the day before my surgery,  hoping my voicemail sounded like it came from a sane person.  

But I couldn’t sleep.  My husband had turned on the TV in the kitchen, and it was making me crazy.  He turned it off, and I put in my ear plugs to keep out other sounds – the house, the cars passing outside, everything.  I wanted silence. About 30 minutes passed before I was in drugged slumber again.

I dreamt of darkness. Somehow I knew I was in Maui and sensed it was our honeymoon or ten year anniversary trip.  It was pitch black until we started climbing up a narrow mountain path.  Suddenly the path upwards was illuminated by a glowing salmon-orange color.  There wasn’t much else in the way of imagery – some shops appeared, set up against the mountain side, but only two or three and they were simple thatched roof affairs. The dominant dreamscape was the angled salmon-orange slash against inky blackness which I found quite beautiful in its simplicity but profoundly eerie at the same time.  These were the only things that my previously fertile imagination could come up with.  And also, I didn’t recall ever dreaming in the hospital – probably because I had never actually fallen asleep long enough to get to the dream state.

I woke up at about 4:30 am, super awake and enthusiastic about telling my husband all about my dream.  At first he was happy I was awake at all, then not so much.  He asked for the time and when I told him he expressed surprise at how talkative I was, and asked that we continue the conversation in the morning. He rolled over, snoring fitfully seconds later.

It would be a few hours until the sun came up.  I never really fell back asleep, but that was fine as I would have a whole day of it.  Sleep, and the silence I had longed for since my predicament.  I couldn’t wait.


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!

April 9 – Post Melon Muddling Oddness

For whatever reason, my brain refused to let me write since the last post.  I’ve come up with some worthwhile openings but the grey matter didn’t give a hoot if my posts became erratic and not so scheduled.  It also doesn’t pay to write ahead, as I often change my mind as each day brings some new experience that I feel worthy of discussion. I decided that I can improvise just fine, as long as I have a good start.  Like Hayao Miyazaki, who didn’t quite know how Spirited Away would turn out, I would create as I went along, with no set plot to guide me.  The mind knows what to do if I listen to it.  Things will work out in the end.

So I listened, took some major naps and some time for myself and have had marvelous results.  I’ve actually felt closer to being my old self minus some emotional baggage, and set my attention to other things – like going to my first free talk on transcendental meditation.

Yes, it’s the meditation technique the Maharishi Mahesh Yogi guy taught the Beatles.  But it’s also a thousands of years old practice, and that alone convinced me it’s nothing like scientology.  I wasn’t really interested until a friend of mine from work came up to me shortly after my return and described his experience with such enthusiasm and went into animated detail about how his life had changed. He definitely wasn’t the type to be brainwashed or be conned into something that went against his beliefs, so I thought maybe there’s something valuable about transcendental meditation after all.

This also ties in with finishing the book Stroke of Insight by Dr. Jill Bolte Taylor. She described her right hemisphere experience during her stroke as euphoric, and felt a oneness with everything.  I had a similar experience in the early part of my recovery, and was eager to regain that blissful wholeness with the universe again.  Which is why I bought the book, hoping to gain insight on how she managed to achieve it voluntarily.  After pages of reading about her recovery, the relationship between the two hemispheres as they function instantaneously to form our perception of reality, and occasional flights of delirious repetition about how wonderful it was to be in a state of right brain bliss, it turns out that all you need to do to drink the happy pink punch of the right hemisphere is meditate.  This was kind of a let down, like some gentle explanation offered by Glenda the Good Witch of the North: “Silly brain tumor survivor,  the power has been inside you all along!  Now off with you, and quit complaining. ” (Or maybe the Ghost of Christmas Present in Scrooged is a better choice here).

Anyway, it’s possible that TM is my portal back to that world.   I had never felt so joyful and complete and capable.  I was actually about to attempt algebra problems just to see if I could figure them out – that’s how confident I felt in that state.  I grieved when I first felt the signs of it receding from my waking life and negative parts of my old self returning.

I also hope to gain back some years that the craniotomy took from me. My social worker told me that any time the body is traumatized by major surgery or illness, you age faster than normal.  I had told her I felt so old, and so tired. But I’ve also noticed that it has gotten remarkably easier to let worries go, which is the bonus of all of this forced aging.  I’m experiencing a certain maturity that I’d never had before – which may have been inevitable but instead of happening in the next five years, it’s happening now.  I’m ok with all of this.  And once I get going with the TM my brain will light up like the night sky on Independence Day, and I’ll really be something else.

I discovered immediately that the back of my closed eyelids were completely different now that the sun was up- which was unexpected and kinda horrifying.  They were no longer the usual orangey  color when a light was on, but had changed to a very faint, light green, with dark blue and dark red veiny lines going across. I opened and closed them again to make sure it was real.  (Oh, yes.  Very real.)  I wondered if this was permanent, and what other surprises awaited me as I recovered.

Meanwhile, Nurse Starlord was replaced with Nurse Ponytail, as he sported salt and pepper long hair tied into a neat pony tail.  He was coldly efficient, lacking the warmth of his predecessor.  I had become very sensitive to such things – which nurses gave me comfort and and security, and who were patient and understanding as I stammered, unable to get my sentences out  They wouldn’t  finish my sentences for me like a few of the other nurses, whose impatience I keenly felt. They didn’t bother saying “I’ll find out for you” and responded with “I don’t know, the orders haven’t come yet” when you had a question about your care.  At this point I had developed an intuition about who was truly in the moment of caring and who was distracted by life things that kept them from being more devoted.  Call it a new empathic skill, I guess.  Or heightened sensitivity.

My mother and sister-in-law came to visit, and I hadn’t seen my sister-in-law for at least five years.  We’d had a little disagreement a while ago, my tendency for holding grudges prevented me from communicating with her up until now. But all that fell away as soon as she walked in and squeezed my hand.  Through this one gesture, I sensed that she was willing as me to start over with a clean slate.  It was one less burden in my heart, which I was glad to let go of.

My doctor and one of her assistants came in to remove my head bandages and discuss my release.  I felt like the Joker as I felt the gauze come off, and hoped I wouldn’t be met with something that would drive me so insane that I fell into a life of criminal mayhem.  Although, it would be nice to have an army of henchmen at my command, wouldn’t it?  From what I saw the bandages were bloodless and clean, and once off she examined the wound.  

“Very nice,” she murmured, gently prodding the sutures.   “These will eventually dissolve, so we won’t need to touch this area again.  Just let it heal on its own.”  My husband asked about showering and she said just be gentle and don’t let any water or soap hit the area directly yet.  I was dying to wash the dried gel from my hair, which at the moment gave my hair a bouffant sort of shape.  Also I was glad to be able to wear my glasses again, and see what was going on.

Much to our collective joy, plans were in the works for releasing me the next day, which was pretty unbelievable as far as I was concerned.  I had expected more recuperation after brain surgery, but this was good news as the whole hospital scene was getting very tiresome.  I was also very ready to be back in my own familiar bed and reunited with my fluffy ragdoll cat.  They told me an occupational therapist would visit sometime in the morning, and the outcome of that visit would determine how ready I was to go home.  

This is probably the closest I’ve ever been to feeling homesick, and I would show the occupational therapist how more than ready I was to be released.  I was getting to the bathroom with little assistance, and I had emerged with my personality intact.  What more could a person want after having their melon muddled with?

Tomorrow couldn’t come soon enough, and as my husband carefully washed my hair that night before bed I realized this was just the first phase of my journey.  The second would come tomorrow, and then I would see how I would get along with life outside.