For three weeks I slept.  Except for a few now-and-then spoonfuls of soup or jell-o, I slept — sometimes quietly, sometimes with the small sounds of one in discomfort falling over the bridge of my lips.  Prescription pain medications gave me horrid bed spins.  My only help was a couple of Extra Strength Tylenol every few hours.

Then on a Wednesday morning, three weeks to the day after my surgery, I woke up.  Not the dreamy half-awake I’d been in, but rather, a vibrant awake that shook me with its awareness.

I.  Was.  AWAKE.

I could hear a bird outside my window.  I could see sunlight without wishing for it to be dark.  With my new post-surgery slurry words and diminished volume, I called for my helper.  “Get me into my wheelchair,” I said.  “I want to go outside.  The garden.  Please.  A bird.”

Twenty minutes later, we emerged into the morning.  My apartment overlooked the pool area with its carefully-maintained flower garden.  With some effort, we bumped my wheelchair down the stairs and out to the garden area.  I looked up.  Toni’s apartment was in the building next to mine, also over the garden.  It was in that garden and across our balconies that we had become friends.

“Toni,” I called from below her balcony.  “Look at me.  I’m awake.  Hey, Toni Baloney.  Look — I’m awake!”

It was Wednesday morning.  Toni was at work, but I called out anyway.

When it was clear that I was getting nowhere yelling up into Toni’s balcony, I switched to a different thought.  “Take me around the complex,” I said.  “I want to take a walk.”

“You’re sure?  It’s hot.”  It was evident from her turned-down mouth that my helper was uncomfortable with my behavior and “hot” was a good excuse to take me back to the relative obscurity of my apartment.

“I’m sure.  Take me around.  Please.”

With a shrug of resignation, my helper wheeled me through the winding corridors of the apartment complex.  There I was — bald with a Frankenstein scar running from ear to ear across the top of my skull.  Although I had feeling in my legs, the connection between brain and leg had been misplaced.  Further, the connection for clear, distinct speech was also missing.  I was a garish little bald woman with a horrid scar being wheeled through an apartment complex, yelling gibberish out to anyone who might be within earshot — a magnificent smile plastered to my face.

I.  Was.  Awake.

The following day, my helper quit.

The body is a brilliant creature.  Every system, each organ, the totality of its container and all it contains is designed for survival.  It fights.  It flees.  It heals itself with near miraculous efficiency.  It grins and grimaces through it all, but nevertheless, the body moves through each day breathing and beating.  Rivers of fluids travel back and forth, up and down, expertly through miles of corridors all in perfect balance.  Cells grow, die, are replaced or sloughed away.  The body contains thought, imagination, dread, elation.  It restores itself within its own dreams.  The body is a vessel of strength.

The body is also frighteningly fragile.

With my head carefully wrapped, tubes dripping life-sustaining fluids to keep all my innards in balance plugged into my arms, while other tubes removed unneeded fluids, I must have looked a sight.

Yet, there was my friend, Toni — her face two inches from mine, cheering me on, telling me I was beautiful.  Some time later, she told me that I looked luminescent.  “They gave me glow drugs,” I told her.

The glow was from a fever, but there was a dripping medicine for that.  I had a moaning headache — another drug helped with that.  I was allergic to the first two seizure medications — they offered a third.  Eating was a difficulty — they had someone who did nothing but hold up spoonfuls of soft food for me to take in like a baby bird.

On the third day after my surgery, it was deemed I was past the danger point for brain swelling or hemorrhage.  Home care was arranged for me; I was loaded into my wheelchair and sent home to recover.  They needed my hospital bed on which to lay another bandaged head.

Three days!

Yes, the body is brilliant.  Sparklingly, brilliantly, crazy fierce.  And fragile.

The night before brain surgery is supposed to be a fitful tracing along the corridor of one’s past; an examination of a life before its intersection with an event that will forever change the examiner.  For me?  I slept.  I was all out of prayers and last chance thoughtfulness on my own behalf.  I’d made my peace, settled my affairs, given away what tangibles I had.  I was ready.  I would wake, or not.  I would be changed, or not.  There was heaven, or not.

The following morning, July 6, 1994,  was a bustle of needles, last-minute questions, IV solutions, checking and re-checking my armband.  Was I who I said I was?  Was I the craniotomy or the appendectomy?

At last cocooned into soft blankets, with a final good luck pat on the arm, my gurney was threaded through corridors, elevated two floors, and landing softly next to a surgery table.  One, two, three … lift.  I was transferred to a table (its cold truth instantly screaming up my back) where life was to be transformed.  I would wake (or not) with a very bald head, 6.5 centimeters of growth completely removed (or not) from deep inside my brain and (hopefully) a rounded space left behind in which to fill back up with imagination, personality and a brand new essence of whatever would be.

Thank God for good drugs.  I needed every drop of mind-numbing liquid available in the anesthesiologist’s quiver.  Frankly, I was still scared in spite of my previous night’s reconciliation with all things brain surgery.

Eight hours of surgery later, I was quietly wheeled to an ICU for careful monitoring.  They’d be looking for evidence of brain swelling, bleeding, complications.  I didn’t wake until the following morning.  Slowly, I was aware of something like a stocking cap fitted over my head and the worst headache I’d ever experienced.  But this was great!  I woke up.  I hurt like hell.

I was alive.

In my face, I could barely make out the features of my friend, Toni.  “You did it,” she cooed into my floating, wandering, fuzzy eyes.  “And you should see yourself … you’re absolutely beautiful.”

“Sssaahh,” I said.  Yay, I meant.

Apparently the mouth sleeps longer than the eyes.

With a big squirt of Valium sluicing its way through my body, it seemed there was no end to the “wheee” on that surgery table ride.  Surrounded by a staff of hand-patters and atta-girlers, the process of finding a blood source to my brain tumor was nearly delightful.  But then again, that depends on whether you’re the embolizer or the embolizee.  Being in the latter role, my job was to turn my head as directed, breathe, don’t breathe, hold still, move, be very, very still, sniff back threatening tears.  The injected dye gives one the sensation of heat.  Hot heat.  Liquid lava hot heat.

Nevertheless, it wasn’t so bad.  After numerous camera angles and grimacing poses under the bang, bang, bang X-Ray machine, the radiologist came out from his shielded position behind a large protective screen and pronounced me done.  “I’m done?” I asked.  “Did I live?”  Good old Valium — the drug of silly mouths and ridiculousness.

“You did great,” the doctor said.  “The good news is, we didn’t find a blood source to your tumor.  But then, the bad news is we didn’t find a blood source.”

“What does that mean?” I asked, trying to be serious in spite of the happy drug still bubbling through my body.

“It means my job was easy today, but your surgery tomorrow probably won’t be the easiest.  It means your tumor will be much harder to remove, but then again, you won’t have as much worry about bleeding into your brain.”

“That’s a good thing, right?”

“Half good, half bad,” the doctor said.  “We’ll hold good thoughts.”  Without belaboring the point any further, he disappeared to wherever radiologists go when they’re done dropping bombs onto drugged-up women.

For the next twenty minutes, one nurse applied vice-like pressure to the opening in my groin, while another nurse — the one apparently assigned to patting hands — patted my hand.

Now nicely bandaged, I was moved to my room and instructed to stay still in my bed for the rest of the day so my groin wouldn’t open and geyser all over the place.  Oprah and copious Popsicles helped my body stay quiet.  I can’t say as much for my mind that seemed to still bang, bang, bang like that X-Ray machinery.  Not even Oprah could stop me from thinking about that good news, bad news pronouncement over me.

Toward evening, the surgeon stopped by to give me a smile and a thumbs-up.  That was nice.  I figured he’d been informed of my little blood-supply-to-the-tumor issue, so I just smiled and gave him a return thumbs-up.  It was all in his hands now.

His amazing hands that were brave enough to enter the nether regions of people’s brains every Monday and Wednesday morning.

I was his Wednesday morning.

July 4, 1994:

The day before I was to enter the hospital, the dear folks in my apartment complex got together and threw me a surprise “It Was Nice To Know You” party.  Hot dogs and hamburgers on the grill with all the fixings.  Tubs of beer (I wasn’t allowed) and sodas (make mine a Coke, please).  I lolled on a lounge chair beside the pool like I was Queen of Something-or-Other, while the peasants partied around me.

After dark, we lit fireworks.

Everyone figured it was my last day on earth, and they behaved as such.  Someone gave me a stuffed pillow in the shape of an angel.  Someone else clipped a rangy bouquet of flowers from her patio garden — she couldn’t look at me, but just stuck out her offering before quickly shuffling back to the barbeque grill to obscure her disolving face inside hamburger smoke.  Everyone drank a bit too much.

It felt like I was presiding over my own wake and, in spite of not being able to crack open a beer in solidarity with the now blurry-eyed, swaying, partying group, I was having a blast!  It was a true Irish wake for this soon-to-be either very dead or very different Irish girl.

Holding out a sparkler to write my name on the night, I had never been so happy as I was in that moment.

That happy queen of the world feeling lingered a while longer as I made the next morning’s 5:00 a.m. hospital sign-in.  My surgery wasn’t scheduled until the following day, but this was prep day — which included the scariest test one could ever have the pleasure of receiving.  I was to undergo an angiogram to search for any blood supply to the tumor in my brain.  Through a major vessel in the groin, a line is threaded through one’s body and up, up, up into the brain.  Once in place, photographic dye is injected and its course followed via special X-Ray machinery that tracks overhead and bang, bang, bangs along its course of scenic picture-taking.  When a blood source to the tumor is located, an expanding gel-foam material is injected, thereby giving the patient an embolism to cut off the blood supply.  Yes, I said, embolism.

Before the test commenced, the radiologist gave me a run-down of all the quirks and oddities of purposely giving a person a brain embolism.  The stand-out feature of this swell little procedure is that (as the doctor explained) they miss their mark half the time, causing all sorts of fun brain thingys such as strokes and sudden death.  After hearing the ultimate in TMI (too much information), I was handed a gown and told to meet them in the surgery room after I’d changed.

Whoo boy!

I went to a small bathroom where I was directed to change, softly closing the door and taking a quick look at my reflection in the mirror.  I sure didn’t look like someone about to be embolized into eternity.  I changed, then reached for the doorknob to head into the surgery.  A funny thing happened on my way to that surgery table, though.  No matter how hard I willed it, my hand absolutely refused to open the bathroom door.  I was stuck between the physical toilet and the proverbial toilet.

In that small bathroom, with just enough room to turn around, I performed the only reasonable act in my small arsenal of tricks.  I fell.

My legs buckled and I fell onto my knees.  Damn, this was dumb.  They were supposed to work on my head and I was about to present them with two skinned knees that seriously needed boo-boo bandages.

It’s interesting how one becomes suddenly spiritual when given the choice between schmoozing with God … or not.  There on my very skinned knees, with hands that refused to open the bathroom door and a crew of doctors and nurses waiting on me, I did the ultimate, yet quick, suck-up to God.  “Okay, God,” I said aloud into the small echoey space where I knealt between the sink and toilet.  “If you’ll be so kind as to make a brilliant doctor out of that man who’s out there waiting to poke things into my brain, I’ll do my part and trust.  I’ll stand up and open the door and we’ll get this thing done.  Deal?  Deal.”

With that, I stood, opened the door and climbed up onto that Table-o-Fortune for what promised to be another turn on the ride of my life.  Ready or not, there I was.

Tomorrow’s episode:  Say What?

Diagnosis night I took my MRI films to show off to my neighbor and friend, Toni.  We drank tea and made up the lamest brain jokes we could devise.

Knock knock.

Who’s there?

Brain.

Brain who?

Hahaha.  Fooled ya!  Lights are on but nobody’s home.

We were a couple of adolescents making up ridiculous jokes and spitting tea through our noses with each successive knock knock through comedy land.  We did our best to ignore our terrified faces and trembling fingers.  The goal was to laugh and forget and make the night go quickly.  It worked.

The next morning I met with the surgeon who would remove the top of my skull.  He was a gentle person with magic hands that dipped and swirled into the brains of his patients every Monday and Wednesday morning. The rest of his days were spent convincing the likes of people like me that we wanted his hands in our brains.

He explained the procedure, carefully guiding me across the chasm of pitfalls and the sheer gravity of brain surgery.  I listened carefully to every sentence.  His words were meant to comfort, inform and soothe.  In succinct language, he outlined what was to become my new normal:

1. If all goes well, you’ll need a permanent wheelchair.
2. Your speech will most likely be affected.
3. You’ll have seizures the rest of your life.
4. The biggest immediate dangers will be brain hemorrhage and swelling.
5. You may have personality changes.
6. Sudden death is likely.
7. I can give you a face lift if you want when I close up.

With the thought of useless legs, slurry speech and sudden death clanging in my head, I stupidly said, “Don’t worry about a face lift.  I’m still young and I just want you to save my life.”  WHAT?  What woman in her right mind would turn down a free face lift?  Already, my mouth was betraying me and I hadn’t even entered the hospital.

Surgery was scheduled for three weeks hence, which would give me time to give autologous blood for the transfusions I would most likely need.  At least two pints would be my own blood returned back to me.  I ordered a nice blue wheelchair to match my eyes … and carefully wrote out my will.

Except for during the initial shock of diagnosis, I didn’t cry.  Not once.

Over the next three weeks, I stayed very busy.  My first task was to reconcile the disappointment that I wouldn’t be going on to finish my law degree.  Although I’d completed my AA with a 4.2 average (with an undetected brain tumor squatting in the bottom of my brain, I might brag), my college days were over.  I was to be a word-slurring, wheelchair-riding flunkie … IF I survived.

If I survived.

I arranged for temporary disability payments and, swallowing hard, informed my office of my condition.  All this time, I’d quietly kept my medical issues to myself.  My colleagues were stunned.  They offered to loan me the difference between the puny amount of money the state would pay in disability and what I was currently receiving in my paycheck for the next six months.  We created a legal agreement (leave it to attorneys!) and I gathered my desk items together just in case I didn’t return.

Then they gave me a cake and a Get Well Soon card.  Nothing like a brain tumor party to perk up the ole spirits.

Still, those pragmatic California water law attorneys sat with me in the conference room, fidgeting with their feelings, but nevertheless smiling, patting my back and passing around slices of triple chocolate cake.  Damnit!  Those suckers made me cry — they gave me a loan to help me survive financially.

These unlikely people helped me forget all the pondering over who and what I might become once the lid of my brain was pried open and all my contents were revealed.

They gave me a cake.

That afternoon I called the surgeon’s office and requested that he play classical music in the operating room.  I said I wanted gentle stuff.  I also asked him not to utter “oops” at any time, for any purpose.  I reminded him that my brain would hear everything he said.

Next, D-Day minus one.

A herd of deer congregate each morning and evening on the golf course outside our hotel room.  We stand on our second floor patio, holding a glass of wine, and marveling at their tender habits.

I wished to take it all back — the MRIs, the too-kind receptionist, the serious dark eyes of the neurologist as she seated me at her desk, my hands trembling on my lap.  I knew something was wrong because everyone was too nice and although Sacramentans are known for their good nature, there was an undertone of pity and I knew it … I knew it.

“I’m sorry to tell you this, but you have a very large brain tumor,” the doctor said, her face pinched with the gravity of her words.

The drive to San Antonio from Phoenix takes about fourteen hours and travels through flat Arizona Sonoran desert terrain to the uniquely beautiful Texas hill country.  We delay the gratification and stop slightly more than halfway in Van Horn, Texas.  I do most of the driving because I seem immune to fears of threading our small car through the gamut of 18-wheelers on rain-slicked hilly roads at 80 miles-per-hour.  I’m fearless.

Terror hit me.  My hands wanted to cover my mouth to keep it from crying out.  Instead, they sat quivering in my lap.  I suppose my eyes widened, but I said nothing.  How could I?  What does one really say when a doctor hands you a 6.5 centimeter brain tumor?

She slapped an MRI image into a light box and pointed out a roundish lit-up area.   She explained that my tumor, although larger than a golf ball, was, nevertheless, in an operable position.  It squatted deep at the bottom of my brain and, from my perspective, didn’t look so … what did she say? … operable.  By then, my eyes had filled with tears.  She came around the desk to pat my hands, which only made my eyes flood more.

Below street level, the San Antonio River runs through the center of the city.  It’s the famous River Walk and we’re excited to explore its myriad shops and restaurants — a tourist trap for sure, but still it’s rife with history and color.  We follow a winding staircase down and step into a guided gondola with a gum-chewing jokester at its helm.  Halfway through the tour, we decide we’re trapped on a boat being wheeled around by a smart-mouthed pipsqueak.

I left the neurologist’s office with an appointment with a neurosurgeon scheduled for the following morning.  I carried with me an armload of MRIs and a mouthful of jokes to replace my earlier tears.  Brain jokes.  Tumor humor.  A staggering comedy act hardly fit for the days ahead.

I didn’t want to scare anyone.  I was frightened enough for us all.

Tomorrow, we’ll explore the staggering importance of a steady-handed neurosurgeon.

My shoes.

With nothing evil or sticky on the bottom of my shoes that would indicate the reason for my new loopy walking stride, the doctor followed the standard protocol that every California HMO has on the first page of their play book — he ordered up a course of physical therapy.  No tests.  No X-Rays.  No MRIs or even simple blood work drawn.  Just a six-week course of Physical Therapy!  Certainly, I’m an advocate for physical therapy; it’s helpfulness is more-than beneficial for most.  But this is usually for people who’ve been diagnosed with something to therapy on.

Nevertheless, I went to PT hopeful that, with a few helpful exercises, I’d resume the ability to walk and chew gum again.  After completing twice-weekly visits for those six weeks, the physical therapist sent me back to the doctor with a note saying, “This patient has deteriorated.  I don’t recommend further physical therapy.”

By then, I walked like a person buffeting the winds inside their own personal tornado.  As hard as I tried to walk normally, after a step or two, those darned legs would wind themselves up in a tizzy and simply refuse to work like a coordinated set of bi-peds.  About that time, my right arm decided to drop out of the group and hung at my side like a limp string.  I’d purposely get it swinging, but I couldn’t keep up a normal leg-arm routine for more than a few strides.  It was clear that the right arm no longer wanted to play with the rest of the gang.  And the rest of the gang seemed to be having a break-up of its own.

The doctor was clearly annoyed.

After one more look at those shoes … Those Shoes … he pinched his lips into a tight circle and grudgingly wrote a referral to a neurologist.

The neurologist — a lovely woman with dark curls brushing her shoulders and eyes that could smile you right into a feeling of being endlessly hugged — had no interest in my shoes.  Instead, she pondered over my right arm.  “Let’s address the issue of your arm not swinging in a natural gait,” she said, all the while watching with those soothing eyes.  “We’ll do an MRI of your head and neck.”

At last!  A Test!

I was scheduled for two days hence and sent on my lurching, loopy way.  I spent the rest of my day busy at work, happy that I was to have a real, honest-to-goodness test.   No more shoe examinations or weeks of unproductive physical therapy.  I didn’t even care if needles were involved (as long as they had lollipops at the end).  I was to have a test.

Hooray!  A Test!

Four days later, I wished I could have taken back that test and … lollipops or not … never have had it.

Please note:  Tomorrow’s post may not occur tomorrow.  I’ll be traveling and at the mercy of the hotel internet access gods,  It’s more than possible that we may need to wait for Diagnosis Day.  Just think of it as a form of annoying this-isn’t-working Physical Therapy.

Again, please enjoy the music while your party is reached.

I believe we each entertain the notion that we’re immortal.  Being a card-carrying member of the Donna Summer, I’m-Gonna-Live-Forever crowd is part of our American meme and I lived that distinction with grand gusto — until one day fifteen years ago when I started walking funny.  Not ha-ha funny, but rather, kind of odd-funny.  As my grandfather might say, I had a hitch in my git-a-long.  My legs seemed strangely disconnected from my upper carriage.  To put it plainly, I didn’t walk — I lurched.

It was my habit at that time to arrive at my office an hour early, park my car and walk eight blocks back to a little coffee shop that not only had killer morning coffee, but also produced fine breads and muffins deep within the mystery of a large, hulking oven.  People came for miles to buy their specialty breads, most notably their pungent asiago cheese bread.  That morning ritual of walking the 16-block round trip coffee and muffin route was not only part of my exercise routine, it was also my time to gear up for what was always a grueling day in legal-land.  I worked as a paralegal for a couple of really sharp, very busy environmental attorneys.  The work was long, hard and deeply satisfying.

Until I started to lurch.

Walking those morning blocks soon became a challenge … not only for me, but for passers-by who felt compelled to avert their eyes from the lurching lady with a bouncing, scalding coffee in one hand and a swinging bread bag in the other.  They gave me a wide berth and I couldn’t blame them a bit.

Something was obviously wrong and the more I wobbled, the wronger I felt.

It didn’t help that this was midtown Sacramento, an area populated by a wealth of eccentric and gregarious homeless individuals.  With my lunging gait, I could have easily been mistaken as a well-dressed member of the morning crowd looking for a quick nip to overcome the previous evening’s bottle-in-a-paper-bag festivities.  The more I wobbled, the more accurate that assessment might have seemed.  Men shook their heads at me and women pulled their children close to their legs whenever I passed.

When one’s brilliance is darkened by the small gesture of a mother’s protective hand in response to a stranger’s ungainliness, it’s time to haul those lurching legs to the doctor for a consult.  My doctor’s response?  He grabbed the shoes off my feet and examined their soles as if therein contained the answer to all things medical.  My shoes?

My shoes.

In case you’re paying attention, above are rough and skimpy notes chronicling the early days before my diagnosis with a brain tumor nearly fifteen years ago.  I get nostalgic this time of year when I approach the anniversary of the removal of The Tumor.  (Note, the capitol letters — IMHO, tumors are big deals and deserve to be treated as such.)  I’ve recently been asked to write about my experience by a couple of friends — one who’s just been diagnosed with her own bright and shiny new brain tumor.  To honor these kind, yet push-me-from-the-nest, requests, I’m hereby starting a string of posts about surviving a brain tumor and learning to live with the New Normal after brain surgery.

Please enjoy the musical interlude until tomorrow’s post.