April 8: The Strangest of Awakenings

My fingertips on my left hand have gone soft.  I have trouble opening jars and oddly shaped energy drink bottles.  Once upon a time, these things would not have given me trouble as I was a multitasking monster who played in three bands – playing bass really makes your hands strong.  I also had a baking business and was employed at a thriving tech startup in downtown Detroit.  My life was non-stop logistics – performing on the weekends,  delivering cakes to weddings and one noteable restaurant, or organizing company outings to exotic locations in the city.  Now I’m down to two of those things and can’t fathom taking on anything more.  Surprising for someone that had a brain tumor sitting in their skull, isn’t it?  But nowadays, I feel no need whatsoever to fill my days with activity and measure my success by how much I could accomplish.  Time to take care of me.  

My therapist has given me a lot of insight regarding my recovery, some of which I found a little disappointing.  It turns out that the healing process isn’t really all uphill once surgery is done.  Instead, it’s a rollercoaster of improvement and regression, mountains and valleys.  You think everything is fine then something you thought you had gotten over happens again.  This would explain why I have anxiety in noisy places and also started to re-experience some speech issues.  And why I find myself once again retreating to the empty fourth floor of my building  just to quiet the cacophony going on in my head.  I had taken breaks down there during the early days of my return to work, hoping it was a temporary strategy that I would soon find unnecessary.  It wasn’t. This new information wasn’t particularly encouraging, but it was at least helpful.  It provided a good reason as to was going on and emphasized my need to continually strategize and recreate my lifestyle.

I also learned and accepted the fact that the brain and spinal cord can’t really ever heal like the rest of the body.  Once these areas are traumatized, they’re unable to recover in the same way other organs can.  But the brain can reroute and recalculate.  It can create strategies and think of new ways to cross broken pathways.  In other words, it’s able to improvise and survive.

So I got that going for me.  

She also told me about this amazing TED talk by Dr. Jill Bolte Taylor, a neuroscientist who had suffered a stroke at the age of 37.  Ironically,  I think I recalled a similar podcast while on the treadmill a few days before going to the emergency room.  I hadn’t really thought much of it at the time, only that I found it fascinating that a neuroscientist should find herself in a situation where she could study a stroke up close and personal.  But as I watched her passionate and in-depth explanation of her unique experience, she began to mention things I had been through, particularly the right brain only euphoria. So that’s why I felt like a ninja superhero beastmaster that one day! How very interesting.

She was pretty trippy, and often closed her eyes during the parts of her talk, arms spread like wings, reliving the euphoric moments of her stroke.  It was such an amazing presentation that I bought the book ,A Stroke of Insight,  and I very much look forward to its arrival.  

I dare you to watch the TED talk.  In fact, I double-dog dare you.  If you’ll pardon the pun, it’s really quite mind-blowing.  (WARNING:  She does handle an actual brain so if you’re prone to fainting at the sight of human organs, just take a Xanax before watching and you’ll be fine.  It totally reminded me of that scene from Predator.  You know the one.)  Because, as we all know…

The brain is a beautiful, complex beast.  I can’t remember now if I had this epiphany before the surgery or right after, but there was definitely a pivotal moment around the time my brain was in a delicate state.   I recall that I was in the bathroom and saw something dark and menacing from the left corner of my eye. Then it was gone. And after that I realized that this must be how it is for schizophrenics or any mentally unstable person.  If I had to live with this mysterious, threatening presence all the time it would probably drive me to madness.  It was so very real that I could imagine it being voices, or a figure or a creature or anything at all a damaged brain could conjure up that would just become part of my reality.  This discovery both fascinated and scared the bejeezus out of me, because it could happen and I would never know the difference.

So when I first emerged from the dark nothing, not too long after having uttered “You’re going to put a catheter in me, right?” I had what I can only compare to as an out of body experience.  I was slightly above my body, seeing with surprisingly perfect vision a group behind glass, gathered around a darker-skinned person in operating scrubs, who could only have been my surgeon.  She was talking, explaining something, and then the scene disappeared briefly as I again slipped into the black void.  I rose a second time to witness the same scene for a few brief moments and I fell back again into unconsciousness.  About five breaths later, I woke up in a dark room, with no one around and wondering if I was still in post op, and if so, where the hell was my family?!??  

Do not panic, I instructed myself in a most Buddha-like manner.  Observe and gather data.

My head was heavily bandaged, but my mind, to my great relief, was my own.  In fact, I laid there in wonder as it slowly dawned on me that I had just had brain surgery and that I was so very alive and okay.  I was so very awake, too.  I expected some wooziness from the anesthesia, but nothing of the sort.  I actually felt better and more clear-headed than I had ever been.  I started planning and organizing random things to check if that function was still intact, and when it was there was a small parade in my heart.  But damnit, I wanted to fall asleep again, but I couldn’t!  Like a real sleep, not this doze off and wake up with someone poking my arm or checking my blood pressure.  I wanted to be enshrouded in the purple cloak of sweet slumber, to have the familiar heaviness of unconsciousness overwhelm me.  But alas, that was not to be.

A nurse walked in to check my vitals, and I asked her if this was pre op.  She said “You’re in ICU – think you’d get better care anywhere else?” or something like that.  Kind of like “How can you not know where you are?” sort of tone.  I guess I missed the whole post op episode unless…was that the vision I had just had?  If so, that was a serious amount of anesthesia they had given me.   She left, after seeing all my vitals were good.  I gathered more data.

Catheter? Check.  Glasses? Gone.  I remembered that my husband had taken them with him, so I couldn’t see anything.  I could make out the clear glass above the wall to the left of the door, the long counter that followed the wall, a computer screen, the nurse station just behind the glass and the machinery next to my bed.  I was, of course, attached to an IV. I then realized this was the ICU where my husband’s father passed away about five years ago.  Was I actually in the same room?  Well, that would be just a crazy coincidence, but it was entirely possible as this whole experience was rife with weird coincidences.  

Later, much later, long, LONG hours later, a second nurse entered to check on me.  She told me more about my surgeon, and like everyone else had the highest praise for her.  Apparently my doctor was also a Harvard grad on top of being a brilliant neurosurgeon, and coincidentally my nurse had gone to school with one of her assistants.  Such a small world.  Another piece in the coincidence puzzle.

I saw a group of doctors gathered outside my room, about to make their rounds.  I recognized my doctor and her assistant among them as they walked past  – I guessed it was about 6:30 – 7:30 am in the morning.  I panicked, thinking they’d be coming to talk to me soon and not being in any coherent condition to deal with anything as complicated as how my surgery went.  I asked a male nurse who had entered my room to take notes for me if she walked in.  He said sure, but I could also refer to the notes that she gave the staff as to what had been done and what was coming next for me.  Lazy ass, I thought, then realized it was actually a good suggestion and that he was just trying to be helpful.  I could just make out his form sitting there on a swivel chair in blue nurse scrubs, and I guessed he was checking the computer monitor for information on me.

I waited.  I was coherent enough to order breakfast, and kept it simple – just cereal, I think.  I spilled some on myself and immediately felt a wave of self-pity and helplessness, as I could only lay there in the mess I’d made and request a new gown, which never came.  But before that, I called my husband, who was really surprised to hear from me.  The shock in his voice was priceless, and I chuckled to myself a little as I hung up.  I mean, what was so unexpected about me calling him after brain surgery?  Doesn’t everyone pick up the phone after they wake up? 

When the doctor arrived with her assistant,  I greeted them with a cheerful good morning.   She turned to her assistant and said “Oh, good!  I kept her personality intact!” which made me laugh, like everything she said.  We had established this form of communication early on in our relationship.  She would tell me something like “We’re going to cut your head open and probably remove part of your skull” and I would giggle.  She found it amusing that I wold laugh at everything she said, but I found my situation so ridiculous that I couldn’t help myself.  I just found it all very funny.

She told me that they had gotten most of the tumor out, but it was bigger than she thought and part of it had grown into my skull.  That part of the skull had been removed, replaced with two layers of titanium mesh, and the tiny bit of tumor that was left behind would be taken care of with radiation therapy if necessary.  After some tee-heeing about the titanium mesh that was now part of my body, I got to the one question still on my mind.

“So…not cancerous?”  I remembered her saying something about a piece that would be taken to pathology during the operation to determine if it was benign or malignant.

Her answer was a very definitive “Nope!” and I was relieved.  But in the back of my mind was the thought “Wait until you get proof.   Then you can celebrate.”  Stranger things have happened in the medical world.  No matter how confident her answer was, I wanted to get some evidence that it was benign and that I could go on with my life, despite the fact that part of my head was missing.

We discussed my recovery.  I asked her if I could go back to yoga.  

“Yes, but no headstands.” Well, I could never do those anyway.  I asked her if I could go back to preparing for the half marathon that I had hoped to run in November.

“Sorry.  That’s out.”  So all my training up to that point had been a waste of time.  I sighed.

”What about playing bass?  Oh, by the way, I’m also a musician. I forgot to tell you when you asked what I did for a living.”

“Are you really?  You didn’t mention that.” She was genuinely surprised, but didn’t ask any more questions about it. “Six weeks,” she said, not needing to explain what she meant.  I quickly recalled the C Major pattern on the bass, and found that mental process still intact.  Whew.

She told me I’d be visited by a speech therapist while in ICU to assess me, and then a second speech therapist to schedule follow up,  and then a physical therapist to see if my motor skills were stable enough to be released.  Overall, she was pleased with my recovery and told me I’d probably be transferred to a regular room later in the day.  Well, I thought, I didn’t need anyone to remember all of this for me.  I did just fine.   I thought no more about the drying splotch on my chest where I’d spilled my breakfast, and took the briefest of snoozes after they left.

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