When the dawning sun threads through the tree branches and spotlights the early morning dew with amber, a leaf or blade of grass becomes a glittering jewel. The season’s first glint of snow or a mysterious pea soup fog reveals common-place scenes in a brand new light and we pause for a moment at the wonder of it. The world is a freshly minted coin when viewed through the wide eyes of first love. All is recreated, changed, as if never seen before.
The phrase “You have a brain tumor” has that effect.
Your breath catches. Thoughts freeze for a moment, unable to respond. Emotions wash in like an Atlantic storm, unbidden, unwanted. Stuttering pictures flash through your head as your brain reboots and tries to process. Pain and courage battle for control. You wait for the punch-line to the joke. You can almost feel the earth pivot on its axis.
More specifically, everything has changed. Past tense. History. Over in the space of two words, three syllables, brain tumor. Rushing past like a fast moving train, too massive and unexpected to stop. Too much inertia. Too little warning. Nothing to be done but stand helplessly in the noise by the tracks and feel the earth rumble, watch the cars sway precariously, the lights slipping into darkness as the horn mournfully falls in a moan. The receding wheels clack on steel like a massive clock dispensing with the trivial ticks of your life.
I steadied myself, turned to Suzie and we exchanged a look. It was all we had. If she had been able to talk, there would have been no words – because there are none for a feeling like that, shock like that. It is nameless, incommunicable, except in that look. Though I try, I will not forget it.
Her ever-changing hazel eyes appeared large and dark as a doe’s caught in headlights. I tried, once again, to clumsily reach over the bed rail and hug her, hold her, comfort her – or was it for me.
She doesn’t cry much, or often, or loudly, but tears rolled down her cheeks, wetting my sleeve.
“I’m sorry, Sweetie,” was the best I could come up with. “I love you.”
“I love . . . you!” she stammered purposefully. Shakespeare could have done no better.
Air caught in small spasms as she took a long, deep breath. If ever there was a moment for someone to fall completely apart, to collapse under the weight of emotion, to come understandably unglued, that was it.
She just breathed.
Was she conserving energy? Preparing to fight? Slipping into a black hole of depression? As I looked into her eyes, I couldn’t know. But I know who she reminded me of. The steely determination of her mother came quietly through. Though she was overwhelmed, it wouldn’t show. I don’t think she ever considered the possibility. It wasn’t heroics. There is no posturing in a moment like that. She wasn’t cold, hard, invincible or indestructible. She was as vulnerable and afraid as I had ever seen her, but not panicked.
Somewhere behind those eyes, unknown to anyone but her, there was a reason. Thinking furiously but unable to speak, hearing clearly but unable to respond, underlying the fear, there was something firm, a purpose. In her eyes was a stubbornness, as if she had a single focus – breathing.
Her thoughts, then and now, remain a mystery as memory slipped away. She could recall nothing after the doctor delivered his report like a gut punch. There was much more to be done, but not for her. She was a passenger, along for the ride, reduced to her essence. She had one job. She kept breathing.
Time passed as silently as an iceberg. We numbly waited for what the future held. “What if” thoughts raised their morbid heads and were pushed away. Closely held dreams began to fade away one at a time as our new reality unfolded itself.
For me, it started with our expectation of growing old together. Sitting in rocking chairs on that imaginary porch slowly dissolved in my mind. Sharing our grandchildren went quietly, sadly away. Sitting together as our children got married turned to mist. Watching their college graduation ceremonies and even high school cap and gown photographs vanished like smoke. Their first cars and dating and proms were beyond our view.
This didn’t happen all at once. Slowly, in the silent waiting, another horrible thought would appear. Until finally our future turned as dark as a moonless night, our dreams mocking us for our arrogance.
The curtain slid aside, zipping in its track, and a nurse appeared with our orders. Suzie’s case had been referred to Dr. Rosenthal, our friendly neighborhood brain surgeon.
“You’ll love him,” she said. “He’s great! A real character.”
“Character?” I said. Not exactly what you look for in a surgeon operating on your wife.
“Yes,” she gushed. “He’s from New York and he wears these funny orange shoes in the O.R. They’re like big foam slippers so he’s comfortable while he works.”
“Hmm.” I’d never actually thought about my doctor’s feet before but I guess it made sense.
“Seriously, you’ll love him. He’s the doctor I’d choose without any doubt. He’s the absolute best.”
Her enthusiasm was almost contagious. Suzie looked at me with one raised eyebrow, dubious but interested. I raised my eyebrows and shrugged, our non-verbal skills ramping up quickly.
“Well, that’s about as good a recommendation as you could get,” I answered. The nurse nodded a half-smile and disappeared behind the curtain.
“Clown shoes,” I said after the footsteps were far enough away.
Suzie snorted, rolled her eyes and gave me a crooked smile. It was the best thing I’d seen all day.
The nurses left us noticeably alone. We prayed together. We attempted some lopsided conversations to distract us. I tried guessing what was on her mind and asked questions to find out just how bad I was at it.
But we had some successes, even with complex subjects. We both understood that this might be our mode of communication from now on and it hurt. There were so many times that I depended on her perspective. There were so many things that she was better at than me.
Relationships and listening were where she shined. I have a terrible tendency to stop and try to offer advice or fix things. Her relationship with the kids would make me jealous except for the fact that she’s always there for them.
She listens to me drone on when I’m trying to solve a problem and it helps me think. Putting thoughts into words forces you to be clear about your thoughts in a way that doesn’t happen when they’re rolling around unchallenged in your head. Now I might not have that anymore.
She might not have that. Her brilliant mind would be stuck inside her head and she wouldn’t be able to talk things out with anyone.
One of the things I love about Suzie is how people love to talk to her. It’s the ultimate compliment to have someone hear your thoughts clearly and reflect them back so you know you are understood. I can’t count the times I’ve found her engrossed in conversation with a total stranger and she leaves them smiling.
So many times I’ve found out an amazing story about people I thought I knew just because she’s curious and makes them feel safe enough to tell their story. Now that might not happen anymore. Now it was my turn to listen for her unspoken thoughts, to try to mind meld and be her voice, to tell the story that she can’t speak.
As we explored this new language between us, we would hit the wall of my limitations. She would shake her head and try to communicate a complex thought in a few syllables. But then, we would have success. I would ask her a couple of questions to either side of her point and she would guide me with a raised eyebrow or squinted eye to the truth. The few successes felt so good it made me believe there was hope.
Just when I thought that maybe we can do this, the curtain softly slid aside and Dr. Gerald Burns appeared.
“What are you doing down here?” he said with a smile. Suzie shrugged and bit her lip. “I’m just kidding,” he said. “I’ve looked at the C.T. and I’m very sorry this happened to you. I know they told you but I’ve referred you to Dr. Rosenthal. He is a great surgeon. The best at what he does. He’s the one I would choose if I had to have brain surgery. I just wanted to look in on you before I went home. Is there anything I can do?”
We just shook our heads and thanked him for everything. He left for home and we didn’t.
“Well, you can’t get any better recommendation than that, can you?” I said.
“No.” She paused for longer than normal. “I’ll . . . miss . . . him.”
“I know, Sweetie. Me too. But it sounds like you’re in good hands”
She nodded and closed her eyes against the fluorescent lights. The E.R. was strangely quiet as the afternoon wore on. Nothing like T.V. No ambulances came. The few other patients were quiet. The nurses talked in low tones at their station.
Suzie finally slept. I stood beside her bed, praying, worrying and wondering when we would actually find out what’s going on.
Dr. Phillip Rosenthal, neurosurgeon, stepped up to the bed and introduced himself, followed by a pair of attentive nurses. He was younger than I imagined. He had dark hair and eyes and perfectly normal shoes. He shook my hand like a musician with a light grip that said don’t squeeze, these hands are important and talented, they save lives. I implicitly understood and matched his grip.
He exuded confidence and mastery of his art. Being from New York, he wasted no time. After he greeted me, he focused on Suzie. Now we’d get some answers.
He performed a cursory examination, checking her pupils with a pocket penlight, calmly reporting his findings in doctor-eze to a nurse. A clipboard appeared, notes recorded. He asked a few questions to judge her responses. He nodded at Suzie slowly, took a deep breath and began.
“The C.T. scan shows that you have a large brain tumor in the left hemisphere of your prefrontal cortex. I’m sorry.” He paused for a beat to give us time to take it in.
“It’s pressing on the speech center of the brain in a place where syntax happens. It’s not the place that controls speech, it’s where you collect the words and string them together into sentences. You think clearly and know what you want to say but the words get jumbled and won’t come out. Like when the word is on the tip of your tongue but you just can’t say it.”
“The tumor is growing inside your skull where there is a finite space so it’s compressing your brain. We’re going to give you steroids to reduce the swelling and ease the pressure. It may help your speech some.”
“O . . . kay,” Suzie said with a little hope.
“So, that’s why she can talk but only a word or two at a time?” I was trying to anticipate Suzie’s questions and ask them for her.
“Exactly. Frankly, it’s a place we never like to touch but in this case, we have no choice. Pressure will increase as the tumor grows. We have to get it out.”
We looked at each other, quietly absorbing the gut punch.
“The procedure is called a craniotomy. We will shave your head, cut a flap of skin above the hairline and fold it back.” He drew an imaginary line on his head to illustrate. His delivery was that of a man who does this all the time, which I guess he did.
“Then we will use a medical drill to make a burr hole for the reciprocating saw. It’s a special saw that cuts at an angle and vacuums the bone dust away.”
I winced reflexively then put on my poker face for Suzie.
I could tell it was a simplified explanation for our benefit making it seem like he was just changing spark plugs and checking the oil. As an engineer, I like detailed explanations and technical jargon but my brain was barely functioning from the shock. I appreciated the clarity.
“Next, I will remove the tumor, then replace the skull and close with stitches. The scar will be covered when your hair grows back in. No one will be able to tell.”
“That’s . . . good,” Suzie said.
“This will be much easier than your mastectomy,” he said. “Since there are no pain receptors in the brain, you won’t feel sore during recovery.”
“Great,” Suzie responded with a smile.
“Yes, most of my patients tell me it’s the easiest surgery they’ve ever had.”
“Wow, I never thought of that,” I said.
“Since it’s not an emergency, it’s too late to do it now. Most everyone is gone for the day. So, we’re going to move you to surgical intensive care where they can monitor you closely.”
“Al . . . right.”
“Do you have any questions?” He looked at me.
My job here was to ask everything Suzie would want to know but I couldn’t think of a thing.
It all went so fast that it seemed hurried but he’d covered everything and more. It just seemed like we should talk about it a little longer, I should ask more questions, kick the tires, like the responsible party that I was. What kind of mileage do you get on this baby? What could I really ask? Was this all there was to it?
He was standing, waiting.
“Are there no other treatment options?” I found myself saying, stalling.
He sighed, “Between the swelling and tumor growth, this is the best option we have. We have to get it out of there.” Before it kills her was the implied end of the sentence.
As this brilliant, busy man stood waiting, I finally realized that the decision was mine, alone.
I looked at Suzie. She looked at me and shrugged. There was no question.
“Okay, let’s do it,” was my eloquent and witty response. It had to be simultaneously the most significant and stupidest moment of my life. I’d taken longer deciding where to eat lunch.
“Alright. I’ll see you in the morning then,” he said to Suzie. “They will start your steroids now. We’re going to take good care of you.” He patted Suzie’s arm and nodded to me.
“Thank . . . You!”
“Thanks so much,” we said at the same time.
And with that, he was gone.