April 12: Tappity Tap

The building was nothing special from the outside.  It was a dull grey bricked affair, with skinny windows that suggested late 80’s office architecture.  I pitied the people that had to work in such a place, and imagined drop foam ceilings, putty file cabinets and Bunn coffee machines with prepackaged coffee packets so that every cup of coffee tasted just like yesterday’s.  Like I said, nothing special.  But when I first walked into the room a sense of calm and well-being overcame me.  Maybe a subconscious reaction on my part because of where I was, but I didn’t expect it. This first experience sticks out in my memory even now, weeks after completing the Transcendental Meditation course.

Words are inadequate to describe TM.  How do you describe falling in love? How do you talk about the peaceful feeling that suddenly comes upon you when rain is hitting the roof? It’s intangible.  But the benefits I’ve experienced so far are not.  Remember in my last blog when I was having severe neck issues?  After my first day of instruction, my neck wasn’t crunching on its hinges when I turned my head.  I waited a few days to see if the soreness would return, but so far I’m still creak-free.  A miracle?  Maybe.  But I think it’s working.

So far I’ve been able meditate twice a day, as advised.  Now that I’m done with the course it’s a little more difficult – I have slightly less motivation to practice since I won’t be required to report my personal observations to anyone.  However, I’m determined to stay disciplined.  They say it will improve my prefrontal cortex and enhance cognitive skills.  The goal, ultimately, is to be stress free and live in a state of cosmic consciousness.  And by golly, who doesn’t want that?

Meanwhile, sensation is returning to the area of my head where the titanium mesh replaced my skull.  One day I ran my nails gently over that area and experienced a prairie grass wind tickling of my nerves. Weird, but not unpleasant – but mostly weird.  This has all been a weird trip, though. I dare say nothing really freaks me out anymore.  Except…this!  Behold, the tools of craniotomy!  

Ooh.  Shiny, shiny.  

Maybe someday  I’ll be brave enough to show my pre-brain surgery MRI images.  Doesn’t everyone at some point of their medical trauma blog?  Something with a disclaimer, like “The images you’re about to see will shock and horrify you.  Or not, if you happen to be one of the few that are morbidly curious about such things.”

Ha.  Maybe later, kids.

The swelling had gone down somewhat, but still decided not to put my contacts in.  I had never gone this long without them and wondered if there was a limit to how long they could sit in saline without eventually becoming one with it.  I couldn’t wait to get these weighty spectacles off my nose. They kept falling down due to the heavy lenses and my lack of proboscis.  

Some time during the day, I decided to keep a daily journal of my progress going forward.  I thought it would be helpful when my two week follow up appointment came up, as there were already things that I had questions on.  Like this smelling thing -I wondered how long it would last or if it was permanent.  And I still wasn’t feeling myself in a number of ways.

I passed the day as a child would, eating, sleeping and taking some time to write.  I was in between two journals – a daily one and the other one I had started to try and remember everything that had happened in the hospital, before I came home. I decided this would be my daily regimen, because one day these events would be hazy memories though they were still so clear in my mind at the moment.  I wanted to remember everything.  

We went for a walk again, and I made it two street corners further before I got too tired to continue.  I looked at the goal before me.  The main street we were following had a series of traffic islands, which made up a little track of sorts, and if you went all the way around and two islands more, it was about a mile.  How far away the other end seemed!  But I made up my mind to go all the way around very, very soon.

The day was passed in this manner, with two long naps in between activities just after I took my pain and anti-seizure medication.  I couldn’t write for very long, but it was something to do when I was really awake and focused.  I wasn’t allowed to look at the internet or text, and I wasn’t really in the mood to watch American Idol or Judge Judy.  We were expecting his best friend and his mom for dinner, so soon enough they came bearing bagels and lox, and Venus razor blades for me because my leg hair had become quite unseemly in a little over a week.

There were some things I had noticed that day.  Prior to my surgery, I had noticed a constant heartbeat in my right ear when I leaned over or if my head was pitched over slightly.  I had thought it would be gone once my tumor was removed, but no such luck, so this was a concern.  Another was the burning sensation in my left breast when I turned over, which was puzzling because it had only happened when the pain med was administered through the IV in the hospital.  Maybe that would go away eventually, but for now it was alarming and annoying every time I turned to lay on my left side.

But the most bothersome thing was happening – or rather, that hadn’t happened yet- was the fact that I hadn’t gone number two for over a week.  Part of it was a known side effect of the pain medication, but part of it was just the normal experience of brain surgery.  Apparently the lower intestine is the last part to wake up, so it was very important that I keep taking the stool softeners even though they didn’t seem to be doing anything.  You’d think I would feel myself getting backed up, but I just didn’t feel anything.  But I would be patient.  One less thing to deal with, right?

We had dinner, then his friend went off on an ice cream mission for our dessert.  It had been my husband’s intent to not leave me alone with his mom, who didn’t quite understand my speech difficulties and who would most likely ask me complicated questions I couldn’t answer in my current condition.  The plan was going well until my husband decided to go in the kitchen under the pretense of cleaning up.  

“Does it hurt?” she asked, a beat or two after he left the room.

“No, actually, it doesn’t.” I looked down at the remnants of my bagel and lox and wondered if I should feign a seizure.

“Really?  I wonder why that is?”  

“Oh, well…I think it’s because … you really don’t have nerves in your brain.  I think that’s why.”  Long pause as I fumbled for the next sentence, as I lost track of what we were talking about.  “Also I’m taking pain medication for any headaches I might have.”  Whew.  Got that out.

“And what kind of medication would that be?”  

“Um…something…that sounds like a whale?…Nor-something?…”  

My husband had returned, realizing I had been alone with his mom for an unacceptable amount of time.  I gave him my best stink eye, or what I could manage with a partially swollen face, and that was the end of my conversation with my mother-in-law for the evening.

Day three of my return home had gone well.  Well enough, anyway.  Maybe tomorrow my head would feel back to how it was and this teeth-tapping thing would stop.

Tap tap tap tap tap tap tap tap tap tap tap tap switch! tap tap tap tap tap tap tap….

April 11: Superhero Badass Ninja

I feel like I’m experiencing fall for the first time.  Honestly, I hadn’t expected such an emotional reaction to the colors of the changing leaves before.  It’s like a miracle I’ve been living with for years and finally noticing.  

Time stops as I gaze upon the vibrant reds, lustrous oranges, the golden yellows all combined tastefully into one vivid psychedelic vision.  It was not unusual for my attention to be completely arrested by  a particularly stunning tree, noting every nuance of every leaf and its every subtle bit of coloration and veining.  Maybe winter will hold new surprises. Perhaps the falling snow will bring tears to my eyes or compel me to do something diabolically creative.

Speaking of surprises, I’ve only had a minimal amount of new (or newish) issues lately, but nothing really worth reporting to my doctor who I feel would dismiss whatever I brought up as all part of the recovery process anyway.  Anything that’s not life threatening or personality changing seems to fall under this category.  Dents are deepening, and my scalp seems to be resettling.  I experienced a weird clicking sensation in the indentation above my left eye, where presumably a burr hole was located (Burr holes are created during a craniotomy to enable the surgeon to lift the skull plate.  Just writing about it makes me squeamish!)  I can only compare it to a bug adjusting its position under my skin and settling back down again,  or the crinkling of an empty bag of Doritos.  Ick!

I’ve also been having neck issues. I can only hold my head up or in one position for so long before it gets stiff and uncomfortable, and there’s particular soreness where it meets the back of my head.  I never had this problem before, and it seems to be worse in the afternoon or in the evening.  The most I can do for it when it happens at work is take a break and head down to the 5th floor and lay on a bean bag chair, where my head can be supported when I lay back, or ice it when I’m home if it’s particularly bothersome.  

I have also found out that I can’t quite take the organizing load that I could before – at least not all at one time. There’s a definite limit before my brain refuses to continue, like a runner stopping to catch their breath before moving on.  My strategy has been to give myself a little extra time for certain things,  like planning major events or making travel arrangements, and taking brief breaks doing mindless tasks when things get too much.  I get back to it right after, and stuff gets done.

And life goes on.

I’ve been wondering lately how many years the brain surgery has added to my life.  There is no question that I don’t have the energy or motivation that I used to for certain activities that I once enjoyed – such as the annual Dinner Crawl that my company had last Friday.   I actually wept the night before, thinking about how I couldn’t participate this year because I knew I wouldn’t be able to deal with the loud bars and walking.  I know, I ran a 5K and all that, but it wiped me out for the rest of the day, and it was 45 minutes of focused energy.  How would I deal with a series of bars, loud conversation, an onslaught of mental processing that would last maybe 4-5 hours?   It scared me, to be honest.  So I declined the calendar invite, and left feeling just a little sadder than when I arrived that morning.  

Halloween was also somewhat disappointing in that I really wasn’t feeling it this year. It used to be my favorite holiday and for some reason I felt no inclination whatsoever to participate.  Was it just a matter of time before I felt this way or did my craniotomy accelerate the emergence of old person thoughts in me?  Or are these the slight changes my surgeon was fearful of after tampering with my frontal lobe, the personality’s hearth and home?

Perhaps a combination of both.  Life goes on, and I’m grateful that it decided to do so.  Besides, who am I to complain when most of my Me has remained intact?

In the morning we discovered that my left eye was slightly swollen – not too Frankensteiny but enough to make me mildly unrecognizable to myself.  My eyes were tiny things, like a kitten at two weeks old.   My husband called the doctor’s office to ask if this was normal, and he was told yes, it was and not to worry and maybe put a cold compress on that side to help with the swelling.

I heard this conversation from my bed, as Octavia was padding over to me.  She sniffed my face as she did every morning, and I noticed I didn’t smell her breath.  It was the usual odor of cat food but now it wasn’t there to annoy me, which I found somewhat odd.

I heard the coffee grinder and wondered why I wasn’t smelling it from where I lay.  Maybe I never did?  Then I heard it brewing and wondered where that comforting aroma of morning coffee was.  Again, I briefly doubted it ever existed before realizing I just couldn’t smell these things.  

“How about toast and bacon?” my husband called from the kitchen.  Okay, this was the last straw.  Bacon should have been the next best thing to coffee and I knew he was making it and I wasn’t smelling it.  This was really harshing my reality.  What kind of post-brain surgery nightmare was this where I couldn’t smell things like coffee and bacon?

I got up slowly and made my way to the bathroom, making sure the door was unlocked.  This was a new arrangement in case of emergency, which I needed to get used to because normally I would have locked it behind me for privacy.  I went to the sink, and I washed my face for the very first time in my own bathroom with my own face products. It was such a damn good feeling to be able to do this simple act of personal hygiene… except I noticed I had a hard time feeling my face.

There was general grogginess and head numbness, inside and out.  The inside of my mouth felt quite peculiar, like we existed in two different universes and were thinly connected by sleepy nerve endings.  An odd tightness perhaps – indescribable. I found that I had started a compulsive habit of running my tongue against my teeth, top first then bottom, touching each tooth quickly.  I marveled at this sudden onset of OCD, unable to stop what I was doing until I had finished the task.  When I brushed, I did it furiously and forcefully, trying desperately to feel the sensation of bristles pushing against my palate.  Nothing but a hint of pressure and the sound of brushing, and the feeling of vast amounts of toothpaste foam building up.  

I spat it out and rinsed, then thought about putting my contacts in but decided against it after looking at the state of my left eye. I thoroughly dried my hands on the towel (and I do mean thoroughly – I found the sense of any moisture on my hands almost painfully distasteful) then ambled over to the dining room, reaching out for the door frame, then the chair then slowly sitting down at the table.  I was a sloth, setting motion to my own slow rhythm, unable and unwilling to go any faster.  I sat down, and felt the hardness of the chair, as if I’d never sat in it before.   

It was then that I discovered I had an acute awareness of everything around me.

It was extraordinary, this sense of crookedness, of the uneven wood floor that had felt so solid and flat when it was first installed.  I could somehow feel all the objects in the room – again, hard to describe, but there I was feeling like a superhero badass ninja.  “So this is what it’s like to be Bruce Lee!”  I thought, feeling the smooth polished surface of the china cabinets with nothing but the imagined tendrils of mental awareness. No wonder he had such lightning fast reflexes and seemed to have an uncanny awareness of attacking foes, even when surrounded.  (Neat-o!)

I closed my eyes for a second, reaching out with my consciousness.  It was nothing distinct, just a vague awareness of each piece of furniture, all the surfaces of the desk, the table, the carpeting.  I wondered briefly if I could talk to the cat with my mind Beast Master style , and tried to summon her by directing my thoughts at her head.  Much to my disappointment she didn’t respond, but maybe even telepathically she was ignoring me.  (Damnit!)

My husband interrupted my epiphany, placing breakfast items on the table in front of me:  coffee, toast, mango peach jam and butter.  I bit into my toast and was delighted at how I could taste each and every flavor as I chewed, and the mouth feel of the crunchy tender texture was the loveliest thing.  Everything was saying hello in the most cheerful way in my mouth, each food item rolling playfully over my tongue, each bite a repeat performance of the last cavalcade of flavors. (Wow!)

But when I bit into the bacon I was immediately disappointed.  It was mostly texture, but no flavor.  (What the ….!)  Missing my bacon high, I reached for a sip of coffee which was almost as incredibly delicious as the toast, and I could finally smell it when it was right under my nose.  Same with the bacon, which suggested to me that something in the brain could tell the difference between close objects and far away objects smellwise – which was even more puzzling because who the heck knew the function of smell was so complicated?  I concluded that something must have happened in surgery that had altered my sense of taste and smell. I hoped it wasn’t permanent. But if it was, I could probably live with the minor hardship of not waking up to the smell of coffee and bacon in the morning. A small sacrifice to retain my Me-ness, I thought.  Two days after brain surgery was hardly the time to be fully recovered, and I assured myself that these missing experiences would return in time.

Breakfast was a tiring affair, and so I spent some time in the recliner afterwards listening to some Pink Floyd as I waited for my sister-in-law and mom.  My husband had chosen a more recent recording, made up of unfinished sounding instrumental tracks that all faded at the end.  He hoped this wouldn’t overwhelm me, and it didn’t seem to.  I just sat there, quietly existing and waiting for my mom and my nephew’s wife so I could get my hair shorn.

They arrived and quietly came in and I soon found myself sitting in a chair with a big towel around my neck, covering my shoulders.  I showed my nephew’s wife the picture that I had intended for my stylist.  The model had a pixie cut, super short and ready for hot weather. She looked it over. “Cute!” With a spray bottle, she wet down my hair then commenced snipping. Through my medicated daze, I soon felt air on my scalp.  She gave me a mirror and asked me if it was short enough. 

“Shorter,” I said.

It was already quite a dramatic change and probably the shortest my hair had ever been.  She had used an electric shaver on the back of my head which was a first for me, and I enjoyed the feeling of my palm brushing up against the bristles afterwards.  High and tight, just like my brothers.

After they left, I took my first real shower – another awesome experience! Since I couldn’t be trusted to not get dizzy and fall over, my husband assisted.  Octavia sat demurely on the closed toilet seat and watched as he scrubbed me down and I braced myself between the wall and the open shower door.  The surgery area was treated gently, of course, and my hair and body were cleansed of everything hospital when I rinsed off.  I felt clean and purified.

Afterwards, my husband asked if I wanted to try and go for a walk and I figured I’d better get started on such things.  I carefully made my way down the steps to the side door and went outside, clinging to his arm as we embarked.  This would be the second time I’d been outside since I got home. 

Slowly, we walked to the end of the driveway.  The world was starting to overwhelm me.  Everything seemed strange and alien again, and yet familiar.  There was an effort to remembering which was probably why nothing was immediately recognizable.

We got as far as the corner, which was not very far at all as our house was only two houses away.  I had felt wobbly from the start of the journey, and soon found out I was unable to turn my head quickly without getting dizzy. And there was so much information to process!  We had been ambitious, and not bad for my first walk.   But I had had enough for the day and needed to be in the house again with familiar things around me, lying in my bed.  We toddled our way back home and I headed straight to bed and laid down, settling gratefully into the warmth of the comforter.  My, how wonderfully warm my feet felt under the cushiony goodness of my blankets!  It was profound, this contentment.  It was a new intense euphoria I’d never experienced before. 

Tomorrow, I told myself, you’ll go farther.  At least past that damned corner!