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Relief And The Plastic Brain

Posted on November 18, 2012, 1:00 AM
Relief And The Plastic Brain

By Nancy Sharp

We are pleased to share an excerpt from SU2C advocate Nancy Sharp’s memoir Both Sides Now. The book is based upon Nancy’s experience giving birth to twins and learning the same night that her husband’s brain cancer had returned. The larger frame explores what it is like to hold life and death in the same moment.

You were so sick and so tired that you almost welcomed the diagnosis. You were relieved to know that you weren’t crazy. We saw the demon tumor ourselves, in vivid contrast, tacked to the fluorescent white board in your surgeon’s office. It was the size of a small rodent. A mouse or a dwarf rat.

No sooner did Dr. Balmaceda break the news to us (life really did combust in that moment), than she escorted us upstairs to the ninth floor, where your young neurosurgeon-to-be, Dr. Michael Sisti, greeted us in his plush office. He had a kind face, a soft voice, and bright blue eyes.

We stood looking at your brain scans as Dr. Sisti explained that the mass was lodged around the lower part of your cerebellum and down into your left medulla. We had no real knowledge of the inner workings of the human brain, how it is made up of over 100 billion nerve cells capable of 1000 trillion connections—all happening in a squishy, three-pound lump the size of a cantaloupe.

Neither one of us had ever seen an MRI of the brain before, and here was yours: black, white and abnormal. What focused our attention was when Dr. Sisti raised the possibility that your tumor could be benign. “You might not need chemotherapy or radiation at all if it’s an ependymoma.”

“Come sit,” he said gently, sensing your physical exhaustion. I remember how you and I hung on those words: it could be benign. Dr. Sisti made no promises; the actual tumor would need to be confirmed by a pathology report, after your surgery, which we scheduled, for the following week.

We sat in matching blue armchairs. You kept staring beyond the good doctor, out the window at the Hudson River. You couldn’t follow the conversation and had a pained look on your face. I was fixated on a pink, plastic, life-size model of a brain on his large mahogany desk, half-listening as he told us about all the intricate cases he had operated on and how he would approach yours. Dr. Sisti tried to reassure us even as he laid out multiple strategies for dealing with tumors in the posterior fossa, wherever that was. Again, he speculated on how the large size and location of your tumor was consistent with ependymomas. “But if it’s malignant, that’s another story.”

I started to take notes since the conversation was so surreal. As clear as the words lesion and fourth ventricle and cranioectomy and chemotherapy looked on paper, I felt disconnected from them, the pen a foreign object in my hand. I forced myself to jot down the words since I would never remember them otherwise.

My foot fell asleep, and as I began to twist it awake, I felt an odd tension within my body—an airy, untethered rustling. Part of me wanted to bolt from Dr. Sisti’s office, to run from this dark curtain he was opening. I wanted to escape back in time, to unwritten scripts. Not youth, so much as possibility. The future with children and a house with a white fence and you mowing the lawn and grilling on weekends and me cooking vegetables grown from our garden. Life had turned for us in this moment, regardless of the outcome of your surgery.

It might have been naïve and vain to feel this way, that life would never cut us unexpectedly (no one deserves terrible things to happen), but, really, we had been lucky up until now. I stayed in that blue chair in Dr. Sisti’s office because at last there was some explanation for your declining health, and he appeared genuine and knowledgeable about how to help you. At some point he told us that he was likely the only neurosurgeon from New Jersey who neither played golf nor liked Bruce Springsteen. “I’ll forgive you,” you said.

Dr. Sisti weighed the variety of possible tumors and treatment protocols, from good to moderate to bad. Under normal circumstances, I’d have drilled down into every perceived scenario. Not this time. I kept looking at the brain on his desk, half-expecting it to run and leap from the window into the Hudson River. Reality was shifting for me in this moment. I couldn’t understand why the plastic brain stayed static or the desk hadn’t budged. Why did the view of the river remain unobstructed? Why, when the earth dropped the way it did for us, was nothing moving?

***

Counseling gave me an outlet, and for you, balancing work and your intensive treatment schedule was enough. You went for full brain and spine radiation every day for six weeks, where you wore a carbon mask and slid into a cradle that immobilized your head and neck, while shielding the rest of your body from toxic rays. They blasted you with 3,600 shots of radiation to your spine and another 5,400 units to your skull, enough to stunt growth and cause learning difficulties in children.

Brain cancer is impossible to hide. You had a two-inch scar on the back of your head, you were bald and without eyelashes, and much as you loathed to admit it, you needed your cane. “Look at me,” you said one night in front of the bathroom mirror.  I kissed your forehead and assured you that I loved you just the same. Yet you didn’t feel loving toward yourself, which was another loss to accept. You never left home without a cap. The hats became your armor, and they gave you strength. 

We buried you in your navy blue Olympics cap, the one given to you by my friend, Gwen, a cancer survivor. She bought it at the 2002 Winter Olympic Games in Salt Lake City.

***

How was it that the incision on the back of your head leaked small traces of spinal fluid, but it was my scars that felt raw and exposed? I felt a tightness across my mouth, as if my lips were sewn together. Everywhere I went, kind people commented. “You look tired. You look sad.” Fear was always bobbing in my head, particularly at night, when the recurrent image of a noose around my neck would startle me awake.

I wish that I hadn’t felt so suffocated by your disease. That I might have kept my confidence during that first long year. Rarely, you allowed yourself to think, “What if I’m not cured?”
With the exception of hurting someone you love, there is no right or wrong way to cope with a life-threatening illness. I came to see that you were right to feel the way you did. We go where we need to go. For your own survival you had to leap ahead, to a place beyond the internment of your cancer, where you could live and dream like a healthy man. Was this a form of denial? Perhaps it’s what Susan Sontag meant in Illness as Metaphor, when she wrote:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

We go where we need to go.

Nancy Sharp is a writer, speechwriter, blogger and keynote speaker. She has been published in a variety of national media and frequently speaks to medical groups about courage. Nancy is the author of two blogs - Vivid Living…Life in Full Bloom…Thorns and All and Tasting Life with Nancy Sharp.  - both of which can also be seen on the Huffington Post

To pre-order Both Sides Now see http://www.nancysharp.net/?page_id=447

SU2C filmed Nancy’s story, which you can watch here: http://www.youtube.com/watch?v=hAnF4aWCwUw
We also filmed her young twins, Rebecca and Casey Zickerman: http://www.youtube.com/watch?v=dW27gtkEyQI


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Comments

Posted by Rachel | January 27, 2013 10:00 PM

Hi Nancy,
My Husband was diagnosed with Stage 4 melanoma cancer.
He under went the same type of treatments and tried a couple of different chemos. The last few weeks of his life, it felt like everything was against him. I voiced my concern to his doctor about the changes he had been going through, I felt like I went unheard. He lost his ability to walk so at recommendation by the radiation doctor I had him admitted to the hospital close to him. Had I known he was going on a two week vacation I would of sent him to our regular hospital. We spent two weeks fighting to keep him in the hospital, they wanted to send him to a nursing home. NO doctor there seemed to be monitoring him and no one spoke to us about what was going wrong. They did do an MRI of his spine and told us had a tumor, they decided to put his full brain radiation on hold while they dealt with the spine. It ended up being his brain edema and rapidly growing brain tumor that killed him. The last few day of his life he was in great agony. On a cold Thursday January 3rd, he begged for hours for help. He was in so much pain, I felt so powerless to help him. I felt the doctors and staff moved too slow. It felt so inhumane what he went through.Friday late afternoon I finally go a neurosurgeon to speak to me about his condition. She was cold and heartless and just flat out told me he is going to die. The thing is I knew he was dying, my goal was to have him pass with as little pain as possible.
His tumor and brain edema was pushing his eyes from the sockets. He kept reaching for his head.
He was settled with pain meds and sedatives but I can tell it only muffled him.. He passed January 5th just after 8 in the morning. They were not monitoring him so they do not know the exact time. They didn’t call me. I walked that morning trading shifts with my father in law. I walked in his room and found him with a sheet over his head… I felt relieved at first, then the pain of what just occurred hit me like a ton of bricks.

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