Shadow Play

Joel B. Levine, MD

Light and Shadow: Spoken and Unspoken

And thus the story of how illness is a shadow play; as if guided by the Dalang , Javanese shadow master, narrator and puppeteer, a hand moving the puppets, creating action and stillness, each part of the other. So too, a doctor’s art must engage both what is spoken and what is not.

“ I remembered when his hair was darker”..

I remembered when his hair was a darker, strands firmer, and my first impression was that this was only someone who resembled a man I knew. But, in that fraction of time that links logic to memory, it was the same man.

I looked at him hoping that my concern was not as visible as it felt.

“Well, good to see you again, “I said accepting, like a needle piercing my skin, how fearful this man makes me.

‘Yes, It has been a while,” he said. “We were in California but I needed to come back.”

I know too well how he brought me to this. The longer he had his disease; the more cells would escape to autonomy, a subversive silent running below his wellbeing.

Each yearly visit, he would tell me his story, a gazette of life between checkups. It was the version he wanted, always the one unedited. Patients need a narrative as a way of showing that they are more than their tests and numbers. We were opening the gate and his new, next, year could actually begin.

I always watched him with admiration. His disease be sapping his energy but he had learned to measure and dole, settling gracefully into a 50-minute hour. Yet, by just asking, “How are you doing?” his future would nestle within the honesty of his answer. Patients rarely lie but have fealty to the truth only when they sense that someone is really listening.

“Well, not as pain free as I was and maybe a little bleeding now and then.”

In the silences between words, in unintentional pauses, decisions are made. Each word can be turned, by the breath that has made it, to a certain end. Doctors were wind talkers skilled in hearing the spoken and the suggested, the sure and the doubt. Now words are just facts, only “evidence” is revealing. Lines can be drawn but left unconnected.

I cannot tell him what his words are really saying. He cannot know how hard it was for me the last time. He became so sick that even small victories were treasured secrets; a little appetite, a thought about something other than pain, a morning without a test. I always knew that there would a shadowy place where the disease could continue even as he began to feel better. A place that needed to be followed and recurrently biopsied, which we did, until one year, when he, or it, lulled me.

“Lets skip this year”, he said, “I do not want to come back and I really do not want anyone I do not know doing the biopsies.”

Biopsies made both of us feel secure. If we could take a little step back, we were past the point when such tiring vigilance was needed. I kindled his optimism when he needed my fortitude. I was weary and I simply let go.

But during that next luxurious year, his year of living dangerously, he started to sense something. His emails were hesitant and I looked past the darker side of his words. He flew back, symptoms increasing, and the belated biopsy revealed cancer in the spot that was our nemesis. Again, surgery followed, changing his body in permanent ways, imposing months of recovery and cycles of radiation and chemotherapy. He saw it as fate; I saw it as my failing. He finally went home and now, he has returned.

I remember that his wife could not sit still when we talked about his choices and, even during his treatments, some part of her was always in motion. She was like a metronome to his disease. He came with her the last time he was here, when the treatments were done. She looked as if she had just been inflated, filling out her personality and filling in her life. I knew that if I started ordering tests she would be in motion again.

I never told him that I thought it was my fault. That I should have known better. All the years had honed my sense of risk. When doctors are young, disease is new and they only see the surface. During training, you are shown the book back to front for it is the time for the obvious. But when you are older, you realize how misleading and frightening diseases can be. It is hard to prepare for how indifferent they are. For all of my experience, I became as scared as he was.

“And I am just a little more tired…. but I guess I should expect that. Getting older”

Please, Doc, tell me that what I am saying is true and nothing more. Sometimes I have been napping like an old dog in the middle of the day…sleeping out of necessity, not out of choice. I promised myself that I would never go through this again. I hated having cancer. I hated learning that I did. You hope that all the stories prepare you when those words are spoken. I guess doctors think that you focus on “ What are the facts? Is there a treatment?” It is a catechism for them but only for the logical part of your brain. The rest taps out the thousand “ texts” to yourself of things done and not yet done and loads endless images of people whose presence in your life may no longer be unbroken.

When I was told, my first thought was of the train; my folks took me on, each year, to our vacation in the South. The train was my constant, coming closer each day as the year moved forward to that moment of a heart as open a boy could have. When he told me I had cancer, that boy and his wonder went silent within me.

How can I tell my wife that this descent may be starting again? She never imagined seeing me fragile and weak. I was where she put her doubts when they needed to be diminished. We relied on each other in all the usual ways; getting the shirts, driving the kids, keeping the orderliness of two…and now, again, she could feel the vulnerability of one.

Last time, I tried to keep my end of the bargain…even when the chemo was doing its worst. Now, I am looking at him, waiting for the inflections in his voice…like a poker player waiting for the “tell”, the flinch or the pause that signals the bluff.

I had known time was not really my friend. I tightened my grip on each day, but each night held more of a sense of closure. Before all of this, I let days and even people slip by me as if the clock and I were not conjoined. After, I tried to distill life into syrup, thick and running slowly. I was waiting but not forgetting. Memory is a harsh mistress after you have been ill.

“ I guess you will be ordering some tests?”

“ Yes just some of the usual ones. “

His son called me asking about how his dad but rules about privacy trimmed what I could say to him. It was almost a relief, fearing that my voice would reveal either sadness or guilt. I told him that his dad looked good but that it was time for the routine tests. I do not know how I actually sounded when I said it, but I know that the words sounded shallow and I felt brittle.

I ordered the CAT scan and asked the radiologist to call me when he was interpreting it. I wanted to see as if through a window…to watch the images being born…a cylinder into which you slip into a process that seems even more intrusive being invisible. To be seen from the inside out, from within a sarcophagus, imposes a different sense of where the self begins and ends.

For so long, doctors were the careful observers, like Sherlock smelling the tobacco from Latakia or touching the worn heel of the shoe. To see so much that others did not was a mysterious skill. To be made more visible by another just reflected the intense humanity of it.

Now, push the button that slides the table that lights the computers, rearranges the pixels, and spins the cameras. The machine is a stranger, a painter of images without the pretence of art, an eye without tears. And it is to what this dry eye sees that I go. Telling the radiologist of this man’s story was my camouflage of medical facts but not the truth.

“See this fullness around the suture line?” Using a dial to reconstruct images into a meaning he has already determined. “Most likely a recurrence and the other thing that bothers me are these areas of density in the liver “.

“Do you think all of them are likely tumor?”, spoken but not needing to be. I was asking for affirmation, having him tell me so that the responsibility could be shared.

“Yes, and I would be surprised if he did not have some symptoms, either from the area almost obstructed or from the amount of cancer in the liver. Did he complain of anything?”, saying it not incredulously but to the mysteries of illness.

‘I think he did not want to accept them.” I lied for both of us.

I spent the night thinking about what had been seen. Of course, I knew the medical research, the forest of uncertainties that, at the same time, create hope and despair. Medicine can become efficient; the phone calls returned, the tests ordered, all making you seem attached. You are often but left unsaid, more to the process than to the bond. Yet for him, I was not just another part of the health care system. I was his doctor, his paladin.

I called him and told him to come to the office in the morning. I said I wanted to talk about the CAT scan. In the surety that greets bad news, he asked nothing. I said nothing. There is such power in the unspoken, the power in and have the shadow.

“ Was it as bad as I think it was?”

Sliding into the CAT scan, hearing it dissect me was so hard. I could avoid telling doc about how bad I really felt but I knew that I could not hide from it. The disease has come back and it has been back for a while. I could feel it, not in the way you feel most things but I could feel a difference in me. I was making an effort to do what was effortless, a change that to others sounded innocent but is not.

I have never told him that I really wanted him to push back when I asked not to be biopsied that year. I wanted him to tell me that fear was ok to have … that I must do the right thing even if I am so petrified that I could scream. I have done that on business trips, on nights alone in the Embassy Suites, into my pillow, screaming but not heard…

I guess we both gave in. I wanted to be free and I guess, in a way, so did he.

: “It is pretty clear the tumor is back and that there is cancer in the liver as well. We need to confirm that but does look that way. I am so sorry. There are still good treatments, new things that are promising in really prolonging life.”

I could not imagine I had just said that. I wanted some hand to reach out and grab those words on the way to his ears but they flew so quickly. To have someone come to harm is a terrible thing. My job is to protect against what illness brings. I have seen young men made old, dreams rusting while people wait for their health to return. It is so hard to be the fortuneteller of bad fortunes that, today, many young doctors retreat to the land of the “mostly well’s “, to the plays that do not end in tragedy. But others, like me, have lived looking for the dark shape that moves between the surface and the source of light, the illness not yet come.

I was this man’s sentry and failed him. He is, now, at the moment when the odds have changed, when the bookies start to shuffle their feet. I have made him more alone than in his first sea of colored ribbons. Treating him the first time was about winning. Treating him now, plays for the tie.

How can I make him want to go through this again, but if I do not, if I let the facts just speak for themselves, he will die and I will have the bitter remorse that comes when your patients death is at your fingertips. Time is the currency that I need him to accept. If I cannot make his disease fearful anymore, I can at least make it less proud.

“ Does prolong mean that any new treatments will only give me some more time”?

I can’t believe the word…” Prolong”, as if time was elastic and could be stretched to fit around a future that I had always imagined.

The last time, my son was so afraid that he could hardly speak to me. In many ways, he is still a boy and I am where he looks when his friends are not watching. Seeing your father ill, dimmer, has no natural place when you are not yet a man. I want him to only think of us at Fenway, during those days of endless light, when coming up the steps from the darkened entranceway, you see the green of the infield for the first time that year and thus forever.

For the first time, I have thought about dying, not as possibility but as an expectation. As hard as the last treatment was, I did it believing that illness can be kept far from death. Each day of being sick was simply ever closer to being well again. Now it will be a different distance and to be traveled as a slow decline, a traverse that will leave me, at the end, so much less of myself and so little illuminated.

“ Light and shadow: Inseparable.

The next day we met again to try to account for his new inseparable companion. He was different, as people are when the play is fully realized. My guilt had softened into the humility doctor’s learn when disease prevails. He spoke of that train when he was a boy, of the unexpected joy in waiting, of a heart willing to open again to a different future.

He had told his family but, this time, he came alone. I reached out for his hand and he mine. We held tightly finally knowing that we will not navigate the leeward side of life alone.

The dalang, smiling, always sits behind the screen.