Roy Exum: Every Life Must End

Monday, November 22, 2021 - by Roy Exum
Roy Exum
Roy Exum
During my lifetime, with a colorful history of an infectious disease known as osteomyelitis, I have endured over 150 surgeries. I no longer have a right leg and my right arm is “ornamental,” as my longtime readers know. I have undergone surgeries in nine different states in an effort to corral the disease and the truth is I’ll have ‘osteo’ for the rest of my life.
 
Big deal. Unlike fellow struggler Napoleon Bonaparte, osteomyelitis cannot kill me due to magnificent modern drugs, and every surgery – without blemish – was performed towards my betterment. Yet I have wondered what would it have been like if just one doctor had sat me down and told me, “Nothing will ever bring your elbow back so quit it! Quit seeking the Holy Grail.
The fact is every surgery ‘wakes up’ the osteo gene and that can kill you,” might be the message. “Stop it now.”
 
Trust me, I have stopped – no more surgeries -- yet I am still fascinated by “the options,” if you please.
 
Over the weekend I was made privy to a wonderful story on medpagetoday.com entitled, “Walking a Mile in God’s Shoes.” I believe, as Paul Newman said in the movie, ‘Hud,’ “Nobody gets out alive, Dogs, horses, and all men … nobody gets out alive.”
 
Death is inevitable and while we can prepare for it, we cannot stop it … it is as natural as childbirth.
That established, you must read a story written by Rana Bitar, MD. She is a physician, poet, and writer who operates a hematology and oncology private practice near Albany, New York. She is the author of ‘The Long Tale of Tears and Smiles: An Oncologist's Journey.’
 
And here, she addresses “Stop it now.”
 
* * *
 
WALKING A MILE IN GOD’S SHOES
 
— ‘Someone had to blow the whistle and tell my cancer patient to stop, so I did’ --
by Rana Bitar, MD, MFA
 
(NOTE: This opinion piece appeared on the website ‘medpagetoday.com’ on November 19, 2021)
 
Someone has to call off the game.
 
She sits in the exam room, all pale and teary in her wheelchair.
 
"What are we going to do now?" she asks.
 
For years now, Ann Marie has been living with the cancerous monster that is eating her from the inside. One surgery after another; one chemo regimen after another; radiation to this part of her body, then to that part. She has visited many research centers and traveled to different institutions to receive treatments as part of studies. She comes back home when she fails a trial, and we go back to another chemo regimen.
 
Her family is on the computer every day, searching to find a study here and a trial there, and when they do, she packs and travels. She then comes back... and travels again. With every trip she takes, she comes back a few pounds lighter, a few smiles shorter, a little less life in her.
 
Ann Marie breaks my soul. She has not reached her fifties yet, and her face is round and small; her large black eyes are watery, as if tears are always stuck in them, never to be spilled out. She has a shy little smile but a loud, resonant laugh. While with time, her loud laughter has quieted down, her smile has never wavered and the tears in her eyes have never dropped. She holds them in as if her pupils are wearing two diamond broaches, sparkling with sadness. Pure, as pure as pain can be. No embellishment, no colors, no added features, but pure, as pain always is.
 
She has just left the hospital, where she had dialysis for acute renal failure brought on by one of the therapies she received. Today, she comes back to me and asks if there is any form of chemo we haven't tried yet.
 
"There is, there is Ann Marie, but it won't work. You will get sicker and sicker."
 
"My family wants me to fight. They say I should keep fighting, no matter what."
 
“At some point, Ann Marie, your fight stops being against cancer and turns to a fight against your body and your soul. Do you know what I mean?" I say.
 
Her face tortures me. Fear jumps out of it, lands in the center of my heart, and bites. Scared? Understatement. Scared is of bugs or first drives or dark, lonely nights. She is terrified of the knowing: Knowing that those bugs will eat her alive, knowing that there is a hell waiting to devour her at the end of the drive, knowing that the darkness of her lonely nights will dissect her molecules and pull her fibers apart.
 
She is terrified.
 
"Can you tell me then what am I supposed to do?" she asks.
 
There are so many things I want to say to address her face and to answer her question: What should we do now? What can I do? I want to tell her that I wish I could replace the sparkles of pain in her eyes with happy ones and bring her resonant laugh back.
 
I want to say:
 
I need to write a poem about you, Ann Marie. About your eyes so they can stay alive. But I can't be a poet in your presence. I lose all my knowledge and skills, the art of poetry and line breaks and syntax and description. I only have to say your name, "Ann Marie," to remember the failure of the world and the words and the failure of me.
 
That is what I want to say.
 
In the book ‘The Art of Description,’ they teach poets how to describe an object. They say stare at it for a long time to glean its essence. I stare and focus on her eyes, but nothing comes out. The more I stare, the less I can say. So I decide that the description of Ann Marie's eyes is this: They are indescribable.
 
My words hide behind her eyelids, and nothing comes out of my mouth. I fail. I snap back to her question, the real question that I have to answer: What should we do now?
 
Many years ago, I would have danced around the subject to avoid the ultimate answer and a confrontation with the unpleasant; to avoid being the decision-maker, the terminator, the borrower of the shoes of God. But now, I can't do that to her. Care has to be tough, has to be honest and straightforward; otherwise, it becomes a lie. I know what I have to do.
 
I stand in the room, firm, and my voice is solid. I tell her that more treatments will be futile, and that she should sign a DNR (do not resuscitate) order. I tell her she should not go to hospitals anymore, and with a straight face, I tell her that dying on a ventilator is not pretty. I tell her to stay home and die in peace and with dignity. I don't shake; I don't back off; I don't lower my voice.
 
She listens.
 
"You think so?" she asks. The diamonds in her eyes grow dim.
 
"I know so," I say.
 
She tilts her head down and freezes there for a few seconds. She then lifts her chin and smiles -- and the diamonds sparkle as a single tear drops from each eye.
 
"I trust you, doc. That is what we're going to do, then."
 
I nod in agreement.
 
"Thank you," she says.
 
We say our goodbyes, and she leaves the room.
 
I go back to my office. The burden presses harder and harder and breaks through my stoic demeanor. I close the door, and I start sobbing.
 
Ann Marie, someone had to call the shot. Someone had to blow the whistle and say stop, so I did.
 
* * *
 
How I wish thousands had a doctor as noble as Rana Bitar.
 

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