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Don, 1979

It’s 3:00 am. Deep in the bowels of the hospital, bright fluorescent lights softly buzz overhead in the windowless snack bar, where a row of vending machines give off a low hum.

Don, my sixteen-year-old patient, and I sit huddled in orange plastic chairs at a tiny Formica table. He is ranting, and I am listening. Neither of us can sleep. Don is awake because he is mad at the world, and I’m awake because I’m the pediatric resident on call.

Don’s left sleeve hangs limply, his arm amputated at the shoulder. A top-notch athlete, he broke his arm sliding into second base. The X-ray revealed an unexpected tumor, a weak spot that led to the fracture. Horribly, irrevocably, it was osteosarcoma, and the whole arm had to go, in an effort to save his life.

His parents are grateful that the tumor was found, hopeful that it’s been amputated in time, holding on to the idea that their boy will grow up.

But not Don; he is pissed. Consumed with fury. He hates how the empty sleeve flaps. Looks stupid, he says. He hates the fact that he can’t button his shirt one-handed.

“I despise those slip-on sneakers my mom bought me! Me and all my friends wear Adidas lace-ups, and I am not going to be seen in dumb slip-on sneakers! Slip-ons are for babies,” he growls. But he’s stuck; he can’t tie his shoes one-handed, and he is not going to ask for help tying his shoes.

He rails against the soon-to-come baldness from the upcoming chemotherapy. He angrily wipes away tears.

I listen. Sure, I’ve studied Kübler-Ross and the stages of grief, but I haven’t lived them or watched them up close. Academically, I know that anger will give way to bargaining, depression and finally acceptance, but none of that is any help as I bear silent witness to Don’s grief. We are too close in age; I’m only ten years older. My friends have little brothers his age. It is too real.

So I just listen and nod. And buy more candy bars for us to eat as he rages. Don fumbles with the Milky Way wrapper, stops himself from hurling it against the wall in frustration, finally rips it open with his teeth. I know better than to help him.

And so the hours pass. Finally he winds down, and I get called away to see another patient. Don returns to his room to try to sleep.

This will be the first of many such nights for Don and me.

But on this night, I know something that Don and his parents don’t know. His latest chest X-ray shows a spot on his left lung—a sure metastasis of the osteosarcoma, a death knell.

We haven’t had a chance to tell Don and his parents yet, but I know that it is highly unlikely he will be alive in two years. In spite of the amputation, in spite of aggressive chemotherapy, the cancer will mercilessly spread and kill him.

At home, I sometimes try to get dressed while buttoning and tying with only one hand. I can’t do it. I try to imagine what I would do if someone told me that I had only a year or two to live. I can’t do that either. I read about osteosarcoma, trying to find one tiny bit of optimistic information that the whole oncology team doesn’t happen to know. I find nothing.

When Don’s parents are told about the lung metastasis, they crumple like tissue paper, not bothering to choke back their tears. They eagerly sign permission for the recommended chemotherapy, the last shred of magical hope.

But not Don. In another late-night snack-bar session, he confides in me, his anger white-hot.

“They think they’re going to give me chemo. Nope, not me. I’m going to go out in a blaze of glory! Remember, my parents gave me a car when I turned sixteen, before this dumb tumor—and I can still drive one-handed.”

The threat is clear. In his anger and grief, he has reincarnated himself as a daredevil. What does it matter now? No need to be careful, no need to worry about getting speeding tickets, no need to fear a car accident. He vehemently refuses chemotherapy, consenting only to some palliative radiation to his chest.

I want to argue. I want to plead with him to take the chemo, to get him to give it his best shot. His parents and his attending physician try. But I don’t have the heart. Who knows? I might do the same thing in his place. So I listen.

I see him in the clinic sometimes, his bushy hair and thin adolescent beard a defiant banner among the bald chemotherapy patients. I expect to hear that he’s died in a one-car high-speed accident. But no: The Fates have something else in mind. Something less dramatic, more plebeian. His lung metastases grow, and he gets short of breath and lands in the hospital, with oxygen and narcotics for pain.

With his loving parents by his side, he fades away in a haze of painkillers. Not a blaze of glory.

He is buried in his baseball uniform, wearing his lace-up cleats. I can’t make myself go to the funeral; I want to remember him alive, feisty, a spitfire.

Today, decades later, I still think about Don. Late-night candy bars, fast cars, particularly elegant baseball players and angry teenage boys all bring him back to my mind.

For him, there was only ever anger.

No bargaining.

No depression.

No acceptance.

Was it better that way? I still don’t know.

Ann Beach is a pediatric hospitalist turned writer, a lover of diagnostic dilemmas, and a student of the history of medicine. She was lucky enough to have a wonderful thirty-nine-year medical career (Children’s Healthcare of Atlanta, Emory University School of Medicine, Morehouse School of Medicine) and enjoyed almost every day of it. “While working, I dabbled in writing and had several essays published. Now retired, I’ve turned my attention to completing a long-dreamed-of book on pediatric medical mysteries.”

Comments

17 thoughts on “Don, 1979”

  1. Katherine White

    Thank you for writing this and sharing it with us. You met your patient where he was. Such a powerful story, and so well told.

  2. So heartfelt and beautiful. Being a doctor is hard. The compassion and respect for your patient’s autonomy are the essence of a good doctor, as much as the scientific and technical expertise!

  3. Marian P Harrison

    I believe that Don’s angry defiance was his way of fighting back against his cancer. He wanted to live his life, no matter how short it was to be, rather than suffer the indignities imposed by chemotherapy. I say kudos to Don for his personal choice! I am a retired Intensive Care nurse of 43 years and I applaud Don and your story!

  4. I first confronted osteosarcoma 50 years ago as a student nurse at NYU hospital. My patient was a 14 year old boy whose tumor was in the frontal bones of his skull. He died – a good kid only 5 years younger than me at the time. To this day I still remember his full name and his smile.
    It was from him that I began to grasp the meaning and gift of life. Thank you Teddy …

  5. Moving story !
    Doctors never forget these sad cases.
    In general cancer mortality has decreased in last decades, but metastatic osteosarcoma remains a serious condition to treat.
    Thank you for sharing this painful story.

  6. Louis Verardo, MD, FAAFP

    Dr. Beach, I can’t answer the question you asked at the end of your essay, but I do know that when that angry young man needed someone to listen to him and be truly present, you did that for him. You allowed him to react to that terrible diagnosis in his own way, and that is very impressive. You are a very good doctor.

    1. Thanks! It’s finished, and I’m seeking a literary agent now. Called “Sick Kids:Solving Medical Mysteries in Children”, it is 50 short chapters. Each one is the true story of a child who was admitted to the hospital with one diagnosis and went home with a different one. Hopefully it’ll be published one day!!

  7. Sara Ann Conkling

    This is a poignant story. As a cancer patient myself, I also find it refreshing to read about someone having something other than a “good patient” reaction to their cancer diagnosis. I’m likewise thankful that his parents, and the medical establishment, respected his wishes. I wonder, if you knew he had a metastasis, and that he would refuse chemo, would his arm have still been amputated? It seems that when push came to shove, he made a distinct choice for quality over quantity of life. Maybe his quality of life at the end would have been even better if he had been able to keep more of his arm? Was that even a possibility? Just wondering. For myself, when I have to have something removed I ask if part of the organ can be spared (I’ve had to do this twice, in situations where most surgeons would have removed the whole organ, because it was an easier surgery). I’ve thus been blessed to keep part of a kidney and part of an adrenal gland — something that I attribute to the very skilled surgeons who respected my wishes.

  8. The truth of this comes through hard and clear; which, sadly, we need in order to be useful to one another. Thank you.

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