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On Surviving a Brain Cancer Death Sentence

03/20/2013 06:14 pm 18:14:58 | Updated May 20, 2013

Valerie Harper received a death sentence. Just like my father.

And while I hope that she lives as long as she can, comfortably and with dignity, "surviving" these types of cancer does not always mean what we would like it to. We may treasure the image of the celebrity medical survivor in (pre-doping scandal) Lance Armstrong, Sharon Osbourne, Melissa Etheridge, or any number of other public figures who make triumphant or even quiet returns to their old public lives.

Yet we don't often talk about what it means to survive without thriving.

To live on, yes, but to no longer live well.

On Dec. 5, 2005, my father -- a finance executive servicing multimillion-dollar accounts -- returned to his office from lunch only to feel a sudden pain in his head. He went to the parking and began repeatedly pressing an invisible key into the door lock, before finding his way onto a couch in the lobby for the next five hours, imprisoned in a trance zone from which he has never returned.

The old Phil Schneiderman, in a sense, died that day, the victim of a malicious brain tumor, glioblastoma multiforme, although a different one from Harper's leptomeningeal carcinomatosis. In the days after his diagnosis, my family learned everything it could about this tumor. The news was grim: This is terminal cancer that kills quickly and effectively. There are different classes of tumor and patient, but median survival time without treatment was then four months. With treatment, we were told, survival might be extended to just over one year.

Maybe.

We chose treatment. He had brain surgery, followed by radiation and chemotherapy. These regimens, which greatly weaken the body and destroy the immune system, were complicated by the tumor's placement in his speech center.

Once the tumor was removed, the speed of his language went from dancehall rap to Gregorian chant. His vocabulary collapsed, as a flat map of the world might be folded to the size of a napkin. His now-diminished ability to follow a logical progression of ideas, once seemingly infinite in his job as finance executive and his role as Civil War enthusiast, became further complicated by an aphasia that causes him to "lose" some words completely while also switching gender pronouns as if these placeholders careen on a constantly spinning roulette wheel.

He almost always loses.

When he returned from a 14-day stretch in the hospital in May 2006, in a bout of constant small seizures that left him on massive amounts of anti-inflammatory treatments of Decadron, he sat at our kitchen table in the grips of intense paranoia brought on from "Decadron madness." He took the discharge instructions from me and began to study them. He could read little and understand less, but he struck upon the words "no diving" in the pre-printed papers. We spent a tortuous 90 minutes discussing how this danger was of no concern, as we would not be near a pool. His interpretation was that he was going to die, and that "diving" -- now a strange word and a trigger for the end of his life -- meant any activity he might undertake at home.

He worried about death, but he didn't die.

Even so, he spent his first months with cancer on the telephone, saying goodbye to the seemingly endless parade of relatives, friends, and coworkers from his past. They were collectively shocked to find the decline in my father's mental faculties.

And then he still didn't die.

After fighting off a first recurrence under the care of the exceptional team at Duke University's Preston Robert Tisch Brain Tumor Center, he has settled into a routine that involves a cabinet full of pills timed to buzzers on my mother's phone, an endless series of naps brought on by a mass of anti-seizure medications, more doctor's appointments than anyone should submit to in an entire lifetime, and periodic hospitalizations for a pervasive Clostridium difficile (C. diff) infection that requires constant antibiotics to stave off. He suffers pains and rashes. He walks unsteadily with a cane and falls in the middle of the night when rising to shut off his ceiling fan.

He spends most of his time watching 24-hour news channels, with the volume audible from several blocks away. He cannot understand what is being said in his presence, the subject under discussion, or how he might somehow give himself permission to let go of the anxiety that this non-understanding causes him.

My mother is his primary caretaker, and his extensive needs have taken their toll. My family spends time -- so much time -- explaining and re-explaining and simplifying otherwise complicated stories into their talking points. Here's a typical transformation:

Idea: "The physical therapist said that if you sit for 30 minutes a day in an armchair and then gradually increase the time each day, you might experience a cessation of your back pain. Your back muscles are weak from you resting in bed so much, and while this is not guaranteed to help, it might, and so we would like you to try it."

To my dad: "The doctor says you must sit in the chair."

"Don't go to the funeral until the day of the funeral. Live this day," Harper said on Good Morning America. America admires her spirit, of course, and I can't think of a better way to face such a diagnosis. She shows bravery in the face of the unthinkable, and I hope that she maintains this courage and dignity as long as she is able.

My father is now a long-term survivor who has completely defied the conventional wisdom about his disease. He has survived for seven years: seven years living with a disease whose five-year survival rate for the most favorable patient class is a dismal 14 percent.

His survival past the initial prognosis -- the same as Valerie Harper's -- and then beyond taught me something important. After it became clear there would be no forthcoming funeral, the phone began ringing less often. A small set of friends still calls, yes. Others, though, don't speak with him at all. They understand, as I do, that the Phil Schneiderman they once knew so well, a man who charmed and told stories and seemed always in control and who would, yes, often dominate every conversation, has been replaced by this stranger who communicates trough an idiosyncratic echo chamber.

I loved my old father, but I love this stranger even more.

He says what he never did before -- "I love you" -- each day as we hang up the phone or I leave after a visit. I sometimes drive him to Lake Michigan so we might stare, from the car, into the empty expanse. We watch the waves, the seagulls, and sit together in a way would have been impossible with the man he once was.

When I heard news of Valerie Harper, I asked my dad if he remembers what his life was like before cancer: when he was still the old Phil Schneiderman. He is silent for a moment, and then looks at me, the words jumbling inside his tumor-ravaged brain:

"You mean then, before I died?"

I hope Valerie Harper lives as well as she can for as long as she can.

Sometimes, though, we must mourn the dead without ever attending the funeral.

For more by Davis Schneiderman, click here.

For more on cancer, click here.