Caught in the U.S. Healthcare Maze
by Ute Carson
part 1
I am not criticizing individual doctors. All characters herein are fictionalized. I am writing this story for other old people who may be as bewildered as I was when trying to navigate the system.
My longtime gentle general practitioner placed a firm hand on my shoulder, “That lump needs to be checked.” His biceps revealed evidence of his muscle-building training. Maybe he intended to become his own bouncer, barring the endless stream of patients from barging through his clinic door. He cupped his palms over his temples and sighed, “Outsourcing... so much outsourcing. There will be many cooks stirring the brew. But first things first, a lab workup.” He tugged at the sleeve of my jacket on the way out, “We will do this together.”
Until several months later when physician assistant A arrived, his was the only reassurance I would receive from any medical professional, no sympathetic glance, no comforting touch. “Now run,” were my general practitioner’s parting words. He knew I had been a sprinter in my youth. I took off.
Not much skill was needed to draw my blood. I pointed, “There’s a good vein.” “Are you in the medical profession?” the technician inquired. “No, but I know a good vein when I see one.” No comment. “Who knows, though, I may have trouble peeing in the cup,” I joked. Silence and an extra-tight bandage.
The Breast Imaging Center, owned by a different corporation, was small, modern and friendly. The intake forms covered numerous mental health questions. Any mood swings? Do you have someone at home? Can you get help if needed? How do you feel about possible changes to your breasts? The Beatles’ “All the Lonely People” came to mind. I was fortunate. I had a loving and supportive family. Many other women might require guidance. Facing fear and uncertainty, who would stand at their side when difficult decisions had to be made? Maybe a referral to a counselor could be arranged.
How many times had my breasts been squeezed during mammograms? Nothing to it. The ultrasound was painless as well. The biopsy a week later was tolerable. Dr. V was a small woman with a determined chin and vibrating eyelids. She explained what she was doing as she performed the biopsy. She asked at each step, “Can you take one more? I usually take only three samples. I need to take seven.” Neither she nor the nurse minimized the severity of the situation.
Waiting for the results over the next few days was like pacing up and down a sidewalk when a friend is late. The unpredictability reminded me again of the many lonely people. How would they deal with negative results? How would I? I was more surprised than shocked. I was old, with no family history of any type of cancer. I could not believe it. The lump must be benign. It was not. I was incredulous. How could a tumor so small, so unobtrusive, be so threatening? But there it was. I had more running to do.
Straggly stalks of grass brushed against my legs as I began to navigate my new terrain. I met a veritable retinue of clerks, receptionists, technicians, schedulers, nurses, physician’s assistants and transcribers, all overworked but most of them agreeable, many ready to help. I learned from my conversations with them whether they were single, had children. They talked about their hobbies. One intake clerk told me about having been a firefighter. Now he was fighting cancer fires, he volunteered. A nurse teared up at the thought of having only three weeks of maternity leave with her baby on its way. “My boyfriend will help.” She tried to cover her watery eyes with a corner of her frock. I observed much, listened a lot. And, hearing my German accent, many employees, foreigners themselves, shared their stories. All the while, I kept my own concerns hidden and my family history private.
Next I needed clearance from my cardiologist. The Center was welcoming. There the heart was the symbol after all! And my lump was in the left breast, the heart-side. On the walls of one of the examining rooms hung Chinese drawings of monks carrying a heart on a platter. Maybe they eat the heart? A delicacy to imbibe one’s godless enemy? Was it an omen? Who were my adversaries? A small leak in my tricuspid valve which I had paid attention to from youth checked out. “All clear. You have a beautiful heart,” the cardiologist pronounced. When I mentioned my breast cancer, he replied. “I am sorry to hear that but look at your beautiful heart.” No concept of the whole body but one thing to be thankful for.
When did I first arrive at the swampy lake? With each busy day, the grass seemed taller, more leathery, whipping against my legs. One morning I slipped and tumbled into the water. My clothes were soon soaked. One boot filled with murky slush, I lost the other one. I struggled up the embankment under H’s watchful gaze.
H was the scheduler. She gave me a hand and pulled me out, “You’re not there yet,” she soothingly admonished. “The shed by the river is your most important stop. Tidy up. The way you look now, you won’t have a chance. They’ll take you for a penniless person.” She untied her red neck-scarf, and I wound it around my dripping hair. H gave me a conspiratorial smile. “You’re more likely to succeed if you are well-dressed.”
I stumbled toward the dilapidated building. “Papers,” the guard growled. They were tucked into my breast pocket. They were plastic, resistant to water. They glittered, silver, gold. “Oh,” the guard admired. “Step right to the front. You’re well-insured, thus loved by all the corporations.” Minutes later, I was politely ushered back out only for H to tell me, “You have to get in touch with the navigator. You’ll find him on the large barge over there.” She pointed to a wooden bridge over a canal. A lighthouse’s beams blinked off and on.
The navigator who was trailed by a long line of patients was a heavyset red-bearded man with a clipboard. Penciled in large letters was PATIENT PORTAL. “Hospitals, clinics, centers, names of doctors. I have all the locations, the garages where you can park, the floors where you need to get off and where to find the reception desks and the waiting rooms...” He handed me the address of my first stop, the Oncology Hospital. I needed new running shoes. My boots had drowned in the swamp.
I liked her immediately, the tall slender woman with a giraffe-like neck, and several teeth missing in her upper gums. She had a soft touch, like the muzzle of my mare. Maybe giraffes also have soft muzzles? It was easy to read Dr. B, my oncologist. She was personable and matter-of-fact, sharing details about her family. She also listened. She displayed a shrewd confidence born of her mastery of the knowledge of cancer. Her warnings were like the previous ones. “This is breast cancer. Your reluctance to undergo radical procedures is noted, but we can give no guarantees.”
Inwardly, I began to rebel, even against the woman I liked. A medallion in the form of a cross framed by tiny diamonds and surrounded by little brown flower seeds hung at her chest. I longed to grab the precious dangling jewel. I wanted those seeds. But maybe she needed to keep them handy to spread, one-by-one at a time.
On that visit I encountered more schedulers, nurses, physician assistants and, once, a medical student. I could no longer decipher their personalities. The least known among them was the transcriber who lurked like a mum detective at the end of an examining room, demurely hidden behind his computer taking copious notes. While a doctor did not have to remember any part of the conversation with a patient, the transcriber had to listen carefully, write down everything. He sat incognito, keeper of secrets.
A doctor’s main task was to solve puzzles related to sickness. Once he found the missing pieces and recommended a plan toward recovery, he could move on from room to room, patient to patient, disconnected from likes and dislikes. If he forgot a part of a story, the transcriber had to be his memory. The transcriber had to remain impartial to a patient’s story, at the same time concentrating on every detail. I tried to rise above fleeting encounters. I wanted a connection to each doctor, each nurse, and each assistant. The feeling of an assembly line lingered. What if there were fewer patients and more individual time?
When next I encountered the navigator, I voiced my concerns. “So little time to talk! Conversations cut short! When can I ask my questions? It’s frustrating to wait weeks for an appointment, for phone calls to be returned. When they are finally returned, the next appointment is never the doctor I saw but a physician assistance or a nurse.”
He lowered his head. “We have a letterbox,” and he pointed to a metal container in a far corner of the hallway. You can post your complaints and questions there.” And then he chuckled. “Maybe, just maybe, someone will take the trouble to reply. They’re all so busy!” He started to laugh, a belly laugh, and had difficulty stifling his outburst, dabbing saliva from his chin.
Soon I would experience what real business entailed! My surgeon, tall with polished self-assurance was a runner like me but one who seemed never to run out of steam, never to stop even for a minute. If I was a sprinter, he was a long-distance runner. I took breathers, noticed the swaying grass and even inhaled whiffs of fresh air in the swamp. He had no eye for incidentals. It was Dr. C’s restlessness I first noticed. He swished into the examining room and back out. No small talk, straight to the task at hand. Even after my lumpectomy he hurried down the corridor past my waiting husband, “I’m late. Surgery went well.”
Thin-skinned as he was, he became defensive when I inadvertently offended him. It started innocently. Saying that I could not have surgery on Halloween because my youngest grandson would be Obi Wan Kanobi, he replied curtly, “I have no Halloween. I work all day.” From then on we no longer conversed, we battled. I declined his offer to remove my lymph nodes.
“Will you take the risk then?” he challenged.
“As long as the nodes are clear and the cancer has not spread,” I retorted. In my middle years I had fought the same way for my uterus, refusing a hysterectomy. “Is the uterus cancerous? If not, she stays,” I had asserted. It had been my attitude then, it was mine now. No radical interventions as long as the cancer was confined.
Copyright © 2023 by Ute Carson
