Awards: Third Prize, 79th Annual Writer’s Digest Writing Competition, Memoir/Personal Essay category, October 2010.
Exhibitions: Artist Trust Celebration, Washington State Convention Center Gallery, Aug-Oct 2012
Publications: August 2010, “We Need Not Walk Alone,” the magazine of The Compassionate Friends, a national support organization for bereaved parents, and in an e-newsletter for hospice professionals. This essay also appeared in ChiPPs E-News, the newsletter of the Children’s Project on Palliative Hospice Services in conjunction with the National Hospice and Palliative Care Organization.
The Decision Tree
At 14, my son Andrew knew way too much about brain anatomy. In a dimly lit conference room at Children’s Hospital in Seattle, I watched his eyes as they tracked each new brain scan image being clipped to a viewing panel. He reminded me of me watching a Powerpoint presentation by one of my subordinates. Okay. Got it. Next slide. But he wasn’t looking at a marketing plan, he was looking at his brain.
The first slide clicked into place, showing the golf ball sized tumor deep in the core of his brain. The second, taken right after his first surgery the previous July, showed a dark, finger-thick slash, the path the surgeons had edged their way through with tiny instruments to extract most – but not all – of the tumor.
Andrew stood. He held the back of a steel and plastic office chair, his brown eyes reflecting the black, white and gray images.
The third image clicked into place, captured after ten months of radiation therapy and a round of chemo. Andrew’s eyes went back and forth, back and forth. As the radiologist began to speak, Andrew picked up the chair and slammed it back down to the floor. Bang! “Fuck!”
I searched the gray faces of the medical team. “What do we do next?” I saw in their eyes there was no answer. My gut knew, but my mind refused to let me feel the truth. It refused to let me feel my fear.
I shifted into the most comfortable operating mode I knew: problem-solving. I’d been trained as a problem-solver, trained to see every problem as an opportunity, and this was just another problem. I could handle this. Define the problem. Develop options. Analyze the options. Make a decision and go. I was 42, I had a Stanford MBA, I had 20 years of experience, I knew how to gather facts and generate options and identify the best ones, juggling them until an intuitive flash fused them into a breakthrough solution.
I could break through walls. I just needed options.
Over the next two weeks, I networked my way to CEO’s of biotech startups testing new chemos on mice, looking for leads. I tracked down researchers who’d put drugs through early-stage clinical trials, looking for facts. I interviewed nurses who’d worked with patients in those trials, looking for the subtle details that a quantitative analysis might miss.
“Options,” I kept saying, “I need options.”
My search took me to Boston to meet with brain cancer experts with promising early-stage projects. I wanted to look them in the eyes. Maybe their eyes would reveal something they might not say on the phone.
All I got was confirmation of what Andrew’s medical team had already told me. There were five chemos to try. At best, they could slow the tumor’s growth.
Not good enough.
If the docs didn’t have a cure, I’d find one.
“I need books on brain anatomy, cancer and immune systems,” I told a Harvard Medical School librarian the next day.
“Are you a doctor?”
“No, I’m just visiting.”
She arched an eyebrow. “Are you a medical student?”
“No. I’m a dad.”
Her nod suggested she understood. She helped me gather a starter set and pointed me to a study carrel. A stack of books, a pad and pen, a cup of coffee, just like a market share report, sales updates and a whiteboard.
Brain anatomy fascinated me. It turned out cancer biology had none of the neatness that a standard tumor classification system of grades 1 through 4 implied. The science of the immune system intrigued me. There was something there, I just had to find it.
Pages turned. A yellow legal pad began to fill with notes about brains. My own brain suspended facts the way a juggler puts spinning plates into orbit, waiting for them to come together in that intuitive fusion that would save Andrew’s life. When I took a break for lunch, I felt excited.
Four hours later, looking at the stack of unopened books, fanning out my paltry pages of notes, and remembering that we only had months, not years, all those spinning plates came crashing down around me. I slumped over the desk, the side of my face cradled in the open brain anatomy book, and sobbed.
Another meeting back in Seattle provided a new reason to hope. In the scans, the new growth looked operable. “Operable” meant some of the tumor could be removed. The smaller the tumor, the more likely it could be killed with chemo. We had five chemos to try. Okay, let’s do the surgery, but then what? Which chemo? The medical team’s strategy: Pick one, try it, see what happens. When it no longer seems to work, try another one. This sounded like Russian Roulette in reverse, hoping to find something that might save Andrew’s life.
No. Not save his life. That was too ambitious. Something that might buy some time. Time for another time-buying treatment to emerge from the world’s research labs. Buy enough time and maybe, just maybe, a cure might come along.
But the sequence dead-ended if you got inoperable new growth.
I did the math. There were 120 possible sequences. One had to be better than the rest. Which one? I got no answer. Fine. I would find that optimal sequence. I dipped into my MBA toolkit and pulled out a decision-support technique that hadn’t seen daylight since graduation: A decision tree.
Ten days later, I met with the head of Andrew’s medical team. A man of medium height, slender, with light brown hair and a beard, he had impressed me with his gentle manner and the fact that, in our planning meetings, he focused his attention on Andrew.
Half an hour before our meeting, I snapped the cap off a black marker and began drawing the results of my analysis on the conference room’s whiteboard. At the far left, I drew a box labeled “surgery.” From there, I drew five lines, the lines fanning out with a quiet swish, representing each of the five available chemicals. The marker’s mildly intoxicating vapor spurred me along. From each of these first lines, four smaller branches fanned out, swish, swish, swish, swish, representing the possible outcomes: Shrinkage, no growth, new growth, and inoperable new growth.
Along each of these smaller lines I wrote a number, decimal point X, the decimal point going on the board with a bump, X representing the probability of that outcome. A .2 probability means 2 out of 10 times that’s the outcome you get. The probabilities came from all the clinical trial reports on these chemicals, supplemented by phone calls and emails to question, clarify and confirm.
I popped the cap back on and snapped open the blue marker to do the next set of branches. I used green for the third, and so on until I’d filled the whiteboard.
As the doctor entered the room, I stood up in my corporate khakis and a blue Oxford shirt, with all the confidence I felt when making a presentation to my CEO. I was buttoned up.
At the whiteboard, I reviewed our options, using a pen as a pointer to tic down the list.
“Have I got them all covered?”
“Yes.” He folded his arms across his chest, his eyes intent.
I explained the decision model, where I’d obtained the probabilities and how I used them to optimize the sequence of treatments.
He nodded.
I walked him through the sequence that my analysis showed would win us the most time. Tic. Tac. Tic. Tic. I turned to him, waiting for the “Aha!”
He took a deep breath. “You know, all these probabilities you have up here, while basically correct, are essentially estimates. If I understand this model correctly, the ability to choose a best path assumes that the probabilities are highly accurate.”
He squeezed the edge of the table and leaned toward me, his voice kind and quiet. “They’re not. There’s wide variability in all of them. If you factor in that variability, what you conclude is that it doesn’t matter which path you take.”
I looked at the whiteboard. Something squeezed behind my eyes. A tingling bothered the back of my ears. There had to be an answer among the black, blue and green lines.
He looked down. “The bottom line is that Andrew’s odds aren’t terrific. We all know that. So it really doesn’t matter. Probably the biggest success factor, in my experience, is something you don’t even account for in this model. It’s Andrew’s commitment. How much does he believe in the treatment he chooses?”
I spoke the words back to him, rote training taking over, to paraphrase and show understanding, as my gut and my mind wrestled over the truth.
“Yes, that’s right,” he said when I finished.
I put the pen down with great effort. After managing a polite thank you, handshake and goodbye, I walked slowly out into the hallway. My body slackened. I saw a bench and dropped onto it, my head against the wall, eyes closed.
A nightmare I’d refused to acknowledge forced its way into my consciousness. I see myself hanging onto Andrew with one hand as he dangles over a void. It doesn’t matter how much I love him. It doesn’t matter how much he loves life. It doesn’t matter how smart we are or how much we try or how much we dare, our muscles will give out and gravity will win.
I watch him falling away from me, feeling utter hopelessness and despair. And shame.
“I cannot save my son.”
When I could breathe again, I sat up and wiped my face on my Oxford shirt. After revisiting every dead end of the maze we’d wandered over the past 10 months, I wandered forward in time. For how long, I wondered. Twelve, 18 months?
What could I do? Going to Boston hadn’t helped. Networking to all those CEOs hadn’t helped. The decision tree solved nothing. I’d even shouted at the sky and offered myself in exchange but nobody took the deal.
It’s up to Andrew, his doctor had said. Fine.
And then I knew. An intuitive flash fused all those failures into a new mission. I had a teenager facing death. The hardest thing for either of us was to confront and shed our fear of death. Andrew will not die afraid, I decided. This was the only way I could now protect him. I would help him get ready to die.
I had no idea how to do this. I wasn’t even sure it could be done. But I could walk with him toward his future, and talk with him. And I could try.
