Caught in the U.S. Healthcare Maze
by Ute Carson
Bewildering Stories, Summer 2023, Issue 1005

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 GP 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, " 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 PA A arrived, his was the only reassurance I would receive from any medical professional, no sympathetic glance, no comforting touch. "Now run," were my GP'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, PAs 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? I was at the Center the small leak in my tricuspid valve which I had paid attention to from youth checked. "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, PAs 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 PA 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. Maybe Dr. C only intended a simple warning, explaining positive and negative margins, but to me it sounded like a threat. "If the margins around the cancer are not clear, a second surgery will be necessary and maybe a mastectomy." For once he held his breath long enough to stare into my eyes.

I made my way to the swamp again, sidestepping obtrusive thistles. The morning was drizzly but the dampness did not deter me. I had become obsessed with the possibility of a second surgery. I still had my first one ahead of me. Presenting the possible hazards was fine but why the intimidating remarks? When Dr. C had noticed my apprehension, he got tough. "Well, we have a pill for the demented and for old women. Do you want that?" I retreated and timidly shook my head. What I wanted was a lumpectomy. I had no choice but to trust him. On his way out he hissed, "Contrary!" Inwardly, I stomped on the cold examining room floor, with the heels of my shoes, and cursing!

I had moved to the edge of the lake, letting my feet dangle in the lukewarm water. I had devoured one oncological journal article after another. Only one had been sympathetic to my view. I ripped out pages and made paper boats and set them afloat. A chorus of croaking toads responded and swam toward the strange display. H beckoned. "Get on the diving board and take the plunge. You can't know the results in advance." She was right. I had to put a second surgery and a mastectomy out of my mind. I got up, balanced on bare slippery soles toward the end of the diving board, bent at the waist, ducked my head and jumped, disappearing among the algae. I came up for air. The abundant greenery soothed my eyes and my anxious body. Waterlilies floated with ease among unfurled leaves. I would take the dive into surgery. Maybe my margins would be clear.

What Dr. C thought of me and my contrary views aside, he did a flawless job. He had stitched up the scar with fine precision. It looked like needlepoint. The fog of the anesthetic lingered but the good news of clear margins penetrated. I was overjoyed. If only I could give that gift to other worried women. No matter how lopsided my breasts, how swollen, bruised and reddened my skin, I still had two breasts. I would heal from the lumpectomy. Leaving the hospital took me longer than expected. I had woken up slowly from surgery and was in no hurry to get dressed. "May I help you?" A kind nurse asked at the open door. "We have another patient coming in. Your room is recommitted. You have it for only half a day." I slipped into my shoes and departed holding onto my husband's arm.

As far as my oncologist was concerned I had been in the trenches, but only in trifling ones. Her concerns were with the severely afflicted. I couldn't blame her but I felt abandoned, "I know my cancer is not life-threatening, but it's mine." When she mentioned that on return visits I would see her PA, I balked. I had been from doctor to doctor, nurse to nurse, scheduler to navigator, in institutions run by five different corporations. I wanted my doctor, not a substitute, no matter how good their qualifications. In my wanderings from doctor to doctor, from clinic to hospital, I had more than once encountered different approaches to the same diagnosis. The right hand often did not know what the left hand was doing. There was little sharing of information between specialties or with my primary physician. My surgeon suggested that my swollen breast be drained, my oncologist advised against it. Whom should I trust? It was not medical information that guided me in these instances but my own intuitions. My breast had been poked enough. Let the body absorb the fluids.

I floated on a large waterlily leaf upon my swampy lake. I was drowsy. I had been given too many medications. My arms were looped over the side of my makeshift boat. I rowed with them. I also used my arms as stabilizers when we started to tip. I was lethargic and in a dreamlike state. Following a near pain-free lumpectomy, the complications began to appear, along with nerve pain and a rash. My immune system was down. I was told by a nurse that maybe I had shingles. As on a merry-go-round, the five doctors rotated by. There was a primary physician, a cardiologist, an oncologist and two breast specialists. Who would take care of shingles? The breast surgeons and the oncologist said, "We don't treat shingles." The cardiologist was worried about the stress on my heart but not about shingles. Like a ping pong ball, I was paddled back and forth. Stretched on my waterlily leaf, I was bait for swarming mosquitos, biting, leaving itching welts. Birds circled overhead diving to stab at my ribs with their beaks. Symptoms of shingles?

I propelled myself with all my might in the direction of my GP. The treatment of my shingles had been delayed for days. I worried about the wait. Finally I spotted him on shore. His shoulders slumped, his strides slackened. Had the navigator not warned me that all doctors were overworked? Desperately, I wanted to reach him. I considered myself a trooper at tolerating pain but the shingle attacks put me at their mercy. Finally my boat touched land. "I am waiting," my GP greeted me in a measured tone. He was not faultless. He forgot parts of my medical history, missed sending in a prescription. He dodged questions and ignored me when I pleaded for a conversation. When I cried out, "Where is this pain coming from, shingles or my healing breast?" he answered, "It's hard to say." But he followed through, trying out combinations of pain medications. And he stayed at my side. I was comforted by this but at night I felt the birds' stabs. And days were still a challenge. Would it get better if only I held out through one more resolution of the clock? Gabapentin, Advil along with Prilosec would do the trick. But my neuropathy also flared-up, a companion to the shingles' pain. One day my healing breast swelled and turned fiery-red. Was it an infection? Like sand running through an hourglass, guesses trickled in. The final diagnosis was an internal bruise. Shingles was labelled post-herpetic neuralgia. Advil was suddenly the enemy. Now only Extra Strength Tylenol could help with healing. My GP had solved as much of the puzzle as he could. I waved good-bye to him as my oxalated leaf drifted away from shore. From afar I saw him leaping into the air doing jumping jacks!

I rested, sprinkled drops of lake water on my blisters. "It all takes time," a nurse told me. Was I getting depressed? It had been ten weeks with little relief. Suddenly I felt a touch like the beating of a butterfly wing on my afflicted skin. PA A was hovering above me. "I retrieved a note from you from the letter box," she whispered. "I ambled by and the box was overflowing. I picked up the notes scattered on the floor." "And mine was among them?" "Indeed," she lowered her voice again. "I can explain why you had a neuropathy flare-up after the lumpectomy and why you continue to have shingles, nerve pain and a bruised breast. It's all connected. Did you ever mention your underlying neuropathy? "I swallowed, "Many times. They overlook it by pointing out that I'm not diabetic!" A's left wing fluttered but she continued to explain. And I was grateful that someone was finally taking the time to answer my questions. Then A had to leave. I touched one of her lactiferous wings ever so lightly. With a little help my body would heal itself. My lungs filled with the sweet steam rising from the lake. I was exhausted from juggling medications, different approaches, several doctors--and the pain. My eyelids grew heavy. I fell asleep, a deep restful sleep.

Being old, my recovery was slow. The healing dragged on and I lacked stamina. But I was lucky. No chemo, no radiation. Still, I needed a break before considering next steps. My cancer recurrence rate was projected at 18%. If I took a monthly hormone pill I could cut that percentage in half. But what do percentages mean in individual years? The side effects of a hormonal blockage are numerous. What would I do with brittle bones, hot flashes, weight gain or insomnia? How much was I willing to gamble? I found myself again at the lake's edge. The sun was setting. I stretched out in the evening lushness, smelled damp earth and reflected. A fly tickled my nose and the wind dried my toes. Since losing sight in my left eye, my balance had been wobbly. Would my bones turn fragile? Cancer-free, a fall, then in a wheelchair? What were the tradeoffs? A humming broke into my thoughts. It was A again. "Remember that there are hormone pill options. If one doesn't work, ask for another." And then she sighed, "It's a good time for young and middle-aged women to be treated for breast cancer. We can save many lives. For older women it's tricky, always other frailties to consider." "How true," I answered back in a low voice, quivering with gratitude. Why had no one mentioned the simple option of several drug choices? A melodious breeze swept through the grasses.

For me the cancer diagnosis was not a wakeup call. I had long placed my life's center with my husband and the desire to see our grandchildren grow up into fulfilling adulthoods. "Try the blockage for a month. See what side effects will bother you?" Dr. B suggested. Maybe that's what I'll do. Or I will toss any further treatment to the dancing winds. I remembered Dr. V saying after the biopsy, "You are in the driver's seat. Never forget that." Morning will arrive with a solution and a fresh start.

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