Labyrinth
Published in Harmony Magazine, the literary journal of the medical humanities program at the University of Arizona.
On May 12, my husband was diagnosed with stage three mantle cell non-Hodgkin lymphoma. For the next 62 days I was a mouse in a maze, trying to get two healthcare businesses and one insurance company to hold hands and cooperate to save the patient. I nearly failed.
Leif’s symptoms had materialized under wide sunny skies in the previous weeks—he first felt a pain in his side but didn’t pay much attention. We were far from home, thriving on an artist’s retreat in a modest Mexican town. He’s an accomplished painter, strong and active, with lucid blue eyes and a sly humor. Over several weeks his voice got thinner; he lost weight and started feeling run down. Then he began peeing blood.
We cut our residency short and I scrambled to find flights home to Seattle. Three days later, Leif had prostate surgery. A few days after that, his diagnosis filled the surrounding air like a thunderclap.
Allow me to enumerate:
100 years: The Polyclinic, where Leif always liked his doctors, was physician-owned for a century. They quietly changed their maxim to “physician led” in 2019 after being bought by UnitedHealtcare, the largest health insurance carrier in the U.S. Leif had to switch to that insurance last December so he could continue seeing his doctors. Now physicians at the Polyclinic seem to be leaving in herds—unhappy, rumor has it, with the terms they were offered by the new owner.
Five months: In February, his primary care physician (PCP) left the Polyclinic. Leif chose a replacement but the soonest appointment was five months later, in August. So in May, when my talented husband was diagnosed with lymphoma, he hadn’t yet met his new doctor.
~
Two days after his diagnosis, Leif found the page on the Fred Hutchinson Cancer Center website that reads, “You do not need a referral to seek care or a second opinion at Fred Hutch.”Encouraged, he filled out the webform to request an appointment.
Top 10: Seattle is home to one of the best cancer centers in the U.S. for treating lymphoma. Fondly known around here as the Hutch, it’s recognized for leading patient care and research, so if one’s disease is successfully treated but later relapses, they are advancing novel therapies.
Every five minutes, my lovely husband of 30 years has been hacking to clear his throat in the other room. Listening, wondering if it was pinched by swollen glands, my gut tensed. I was on a roller coaster, ratcheting up.
~
Eight days after his diagnosis, Leif called Fred Hutch to follow up on the appointment request. He was told they’re waiting for an authorization from his primary care physician. Grumbling, he called his Polyclinic doctor’s office to make sure it was sent over.
60 types: Non-Hodgkin lymphoma (NHL) is cancer that begins in the lymphatic system, part of the germ-fighting immune system. White blood cells called lymphocytes grow abnormally and can form tumors throughout the body. It’s one of the most common cancers in the U.S. and there are many subcategories. Leif was told he has mantle cell lymphoma, a rare type that starts in cells located in the mantle zones, the outer ring, of lymph nodes. This type of cancer often grows slowly before accelerating and spreading to other parts of the body. It’s like that roller coaster, inching gradually up, then speeding out of control.
Stage 3 or 4: By the time they’re diagnosed, most people with mantle cell lymphoma already have widespread cancer because many symptoms are common ailments like lower back pain, fatigue or signs of flu. There is no cure, and it’s one of the most challenging types of NHL to treat. There are therapies that put the disease into remission. But mantle cell lymphoma can return after months or years. With time, the relapse cycle occurs more quickly until treatment no longer results in remission.
~
10 days after his diagnosis, a pain in Leif’s side became excruciating and his fever spiked. At 7:00 a.m., I took him to the emergency department at the University of Washington hospital. Once you enter, you’re on ER time: even if your pain is nine on the 1-10 scale, it takes unbearable hours to receive medicine to ease it. Sometime around 10:00 a.m., Leif groaned, “If this is what mantle cell lymphoma will be like, I would throw in the towel.”
I kept marching into the hallway, asking for the nurse with the meds. Eventually, a full dose of Dilaudid brought his pain down to manageable. A CT scan showed an abnormality in his bladder but no infections were found. Nine hours and a medley of tests later, he was discharged with instructions to take Tylenol for the pain. That’s it, Tylenol? Thanks to opioid abuse, they don’t prescribe stronger pain relief these days, do they? Fortunately, his pain subsided the following day.
This is a new heaviness, lifting my head to confront dying—not the cerebral concept of death, but the living, daily contemplation of losing Leif, maybe soon. My funny fellow adventurer in life, my confidant, my lover, marvelous travel mate, the father every woman wants for her kids. And, it must be said, sometimes depressed and disagreeable. But he appreciates me, as I am grateful for him. I will always know we were home to each other, that we never gave up on the other. But I can’t see ahead and fear leaches up through my days.
~
12 days after his diagnosis, Leif again called his Hutch contact about his appointment request. No one answered. He left a message.
“The worst part of these delays is the anxiety it’s provoking,” he said, “as I feel myself slipping away each day with no treatment plan in sight.”
Every day or two: I itemize my dread as a way to grapple with it.
Every day or three: My palliative diversion, a few sips of scotch to loosen my grip on vigilance for an hour.
~
19 days after his diagnosis, with Fred Hutch still non-committal, my sweet husband saw the Polyclinic oncologist. The appointment had been scheduled after Leif’s prostate surgery when the lab found lymphoma cells. The doctor agreed that with this challenging disease, he should be treated at Hutch. In the meantime, he scheduled an alphabet jumble of tests: a CAT scan, PET scan, an ECG, blood tests and a bone marrow biopsy.
At home, Leif began to make dinner—it’s been our habit to take turns—but he sat down with fatigue before it was finished. As I watched him holding onto chair backs to get around, as he tried to cough up an obstruction, I heard a ticking clock. I strained to understand his words as his voice kept getting softer and the ticking got louder.
~
21 days after his diagnosis, he received a friendly voice mail from Hutch saying they were, “still waiting for approval from your insurance company before we can get you officially scheduled with our providers.” Leif was given a different fax number, which he relayed to his PCP’s office, making sure the paperwork was faxed while he waited on the phone.
His neck and back blossomed with hives. He got winded flattening a milk carton to put it in the garbage. I choked up, noticing his curvy, confident handwriting getting jittery.
Two years and counting: A friend of a friend reached out. Hanna was diagnosed with NHL two years ago. “I was told I had three months to live,” she said, “but the lymphoma team at Hutch was unbelievable and my treatment options are nowhere near exhausted. By the time a drug becomes less effective, there are new drugs or clinical trials I can be in.” She was in New York when she called, roaming art galleries. “They’re helpful in other ways too, like nutrition and psychological support. I have a ‘patient navigator’ who coordinates all the help my family I and need.” Hanna sympathized with our frustration over the insurance and provider bureaucracy. “I switched to a concierge doctor,” she said, “and they’ve solved all that hassle. I can see my doctor whenever I have to and if I need a specialist appointment, it takes a day or two.” She shared her doctor’s contact information.
$1,200 to $10,000: Concierge medicine came about more than twenty years ago—doctors go into private practice to be able to care for fewer patients, giving them more time and attention than is allowed in today’s healthcare system, which mostly rewards patient quantity over quality of care. Concierge practices charge membership fees, which average $1,500-$3,000 per year, though I’ve read they can run up to $10,000. The physician bills private insurers or Medicare for certain services, so patients still pay for insurance. This model, by its very nature, caters to more affluent patients. And, as more doctors give up on the increasingly constrained medical system and go this route, it reduces the number of PCPs at a time of doctor shortages. Leif and I, we’re not wealthy but we have savings we live on, supplementing social security. Facing Leif’s crisis, what could we possibly spend it on that’s more important than immediate, responsive care? He started a search for a concierge doctor.
~
28 days after his diagnosis, Leif got a voice mail from Hutch saying his PCP, “is no longer working at Polyclinic and you will need to schedule an appointment with a new primary care provider to get a referral.” This, after Leif’s replacement PCP, who he couldn’t see until August, had faxed the paperwork twice. “We will need the referral to be submitted to your insurance so we can get an authorization for you to be seen here at the Fred Hutch.” Leif called back several times before he got through, and was told they were holding an oncologist appointment for him on July 10th but they needed a “pre-authorization” from his doctor. He understood it would be given to their finance people so the appointment could be confirmed.
Leif is barely audible now, so I called the finance department to clarify what they needed. I was told they didn’t require a referral or anything else from the insurance company.
~
31 days after his diagnosis, my frail husband held onto the stair rail and said, “If I had three months to live, our healthcare system just used up one of them.”
I sat down to write, spun a tepid sentence or two, then went to make Leif a smoothie. I headed downstairs to my art studio while he was napping and stared at my work instead of mixing paint. What can I do right now to solve this paperwork puzzle? Who can I contact to ask for help? My life on hold, I cast about like this at many moments through the day.
I scrubbed the bathroom, scoured rooms of dust and detritus. I baked soft healthy muffins that Leif couldn’t swallow. My days used to be fully engaged with writing and art, activism, seeing friends; now I struggled to stay focused. Now I searched for the levers of my resilience; enthusiasm and curiosity eluded me. In this new reality, this existential anxiety, I crawled through the healthcare system’s labyrinth of absurdity.
~
33 days after his diagnosis, I spent 80 minutes on the phone with the insurance company. A sympathetic agent told me, “With Leif’s plan, he doesn’t need a referral—he can just make an appointment with any doctor or clinic.” Then, while I was on hold, she called the doctor’s office; “They said they would resend the paperwork,” she related. On hold again, she explained to a Hutch staffer that they didn’t need a referral. She relayed that the Polyclinic had faxed paperwork to Hutch three times. Back and forth she went. Eventually, the support rep had done all she could. Aggravated and apologetic, she encouraged me to nail down exactly what Hutch required to get Leif’s appointment confirmed.
“No,” the Hutch staffer said. “Our finance department needs a pre-authorization from the insurance company—then his appointment can be scheduled.” After all those hours, I was exactly where I started, helpless in a Möbius loop. I suspect these businesses each have a secret handshake they don’t share with outsiders.
35 pounds: The weight Leif has lost in the last three months.
~
37 days after his diagnosis, Leif came into the kitchen and gave me a kiss, blended some fruit juice and poured it into a glass. Then he had to lean on the table for a moment—he was short of breath. While we waited for his Fred Hutch appointment, wondering if he’d get to keep it, Leif grew weaker. As lymphoma cells spread, as his symptoms multiplied, our anxiety metastasized.
18.5 minutes: “Patients aren’t people. They’re ‘Relative Value Units,’” my medical-assistant sister said. She works in a women’s clinic. “Our corporate owners directed doctors to see 26 RVU’s per day.” That’s 18.5 minutes per patient, assuming physicians do nothing else all day.
~
40 days after his diagnosis, Leif saw his new concierge PCP. Dr. Keen entered like a man on a white horse. Tall, narrow and calm, he had read my husband’s medical records—not glanced at them, not skimmed them, he read and understood their implications. He spent an unhurried hour asking questions and listening while an assistant took notes. He sent Leif to a specialist who could scope his throat the next day to learn what was blocking it. And Dr. Keen knew people at Fred Hutch—he would connect with them. Then he followed up and did what he said he would do.
To our relief and resuscitated spirits, Leif’s appointment at Hutch was confirmed within a day. It was still three weeks away, but he was getting care while we waited.
10-20 minutes: The typical time PCPs spend with patients. But it could be much worse. For half the world’s population, average doctor consultations are five minutes. In China, it’s two minutes. In Bangladesh, it’s 48 seconds.
Almost 20 minutes: The average wait time in the office, even with an appointment.
24 days: The problem isn’t just short doctor visits, but how long it takes to get an appointment. In 2022, Americans waited about three and a half weeks, on average, to see a primary care provider. If you were ill, you just got worse.
~
I imagine Dr. Keen is interacting with patients the way most doctors would like to. What does it say about capitalist medicine that attentive care is such a privilege? It’s intolerable that people with fewer resources, even with insurance, suffer in comparison to those more fortunate. And, as much as I despise this unequal system, with Leif teetering on the edge, I couldn’t choose not to take advantage of this alternative.
Here’s how the system breaks down:
Fewer physicians: Even before the pandemic, PCPs faced a higher burnout rate and lower pay than many specialists. They increasingly feel their jobs are impossible, and thankless. In one study, one-fifth reported they will likely leave their current practice in the next two years.
More people need care: Our population is expected to gain 18.6 million people in this decade. Due to the Affordable Care Act, 35 million more people have health insurance as of 2022. And in ten years, older adults, most on Medicare and often needing more complex care, are projected to outnumber children for the first time in U.S. history.
More patients per doctor: PCPs usually rely on insurance reimbursements as their main source of revenue. Most don’t become primary care doctors for the money but as hedge funds and insurance companies buy up medical practices and hospitals, chasing the growing pot of government money funding Medicare, doctors are pressured to take on more patients.
More patients = overbooked schedules, meaning ever longer wait times for an appointment. When Leif’s previous doctor left the Polyclinic in February, it took a month to find another and then he couldn’t see my husband for five months. Now more people delay getting care, so they’re often sicker when they finally see a doctor.
Bottom line: Emergency rooms are becoming the quickest route to medical attention.
Nowhere in this tangled system are the costs to patients accounted for, not only for their “administrative burden” time—sorting communication between clinics and insurance, waiting for appointments and referrals, reconciling bills and denied claims—but the cost to their health while they wait.
~
47 days after his diagnosis, Leif had a PET scan; we’d waited four weeks for the appointment. He leaned on walls along the hallway and had to rest before changing into zipless mint green drawstring pants.
As Leif’s symptoms worsened, I’ve perched at my desk writing a word, a phrase at a time. I mashed a piece of avocado into baby food consistency—he couldn’t swallow it. He was down to sipping water and homemade vegetable broth. Or he had the dry heaves; he wanted sparkling water and ice chips. There was a heap of dirty laundry; cat hair collected in the corners. I took him to appointments as he was too unsteady to drive. This was my new full-time job. I was riding hard on a stationary bike, being chased by a pack of wolves.
~
48 days after his diagnosis, and still 12 days away from meeting the lymphoma oncologist at Hutch, Dr. Keen instructed, “Take him to Emergency now—there’s nothing more you can do for him at home.” He’d seen Leif’s endoscopy showing a large tumor closing his throat. “He needs nutrition and his tumors are growing quickly. You need to be his fierce advocate and make sure he’s admitted to the hospital where, hopefully, he can begin treatment immediately.”
I supported Leif walking into the ER, crowded with waiting patients. He was led to a room, past people threaded with tubes on gurneys in the hallway. Before long, he received fluids and steroids intravenously; hours after that, he was admitted. That night, the oncologists at the hospital and those at Hutch were conferring. In 24 hours, the steroids were reducing the tumor in his throat so he could swallow healthy concoctions like protein drinks. His voice revived. They kept him in the hospital for three days, running more tests while the team hatched a plan for beginning treatment. I exhaled the breath I didn’t realize I was holding.
~
I need to scream. I need to throw things. What’s patient-centered about this labyrinthine system?
Six mixed messages: The Hutch website said no referral was needed. Then they needed an “authorization” from his PCP. Later an “approval” was needed from insurance; then, “We will need the referral to be submitted to your insurance so we can get an authorization for you to be seen here.” Another said, “Our finance department needs a “pre-authorization” from the insurance company.” Finance said no referral was needed.
Three times the Polyclinic faxed over referrals. The doctor who reported the original diagnosis scheduled key tests; otherwise, no one cared to problem-solve. The replacement PCP never surfaced.
Zero headway: UnitedHealthcare told me that with his plan, Leif could see any doctor without a referral. A determined agent tried to resolve the impasse between providers but nothing she said made a dent in the wall.
Zero transparency: Finally, after paying extra for a new concierge PCP, Leif’s appointment with a lymphoma oncologist at Hutch was confirmed—I never did learn the secret handshake. Apparently, all it takes is money to get medical care. But by then, my husband was in the emergency room.
~
62 days after his diagnosis, Leif finally met his Fred Hutch oncologist and soon began chemotherapy. Who knows how his body will handle the drugs over time, what side effects he’ll face. Now that therapy has begun—and now that he can eat—his determined spirit is fully engaged. My hope is reviving that he’ll recover, with time. But incurable will, sooner or later, be fatal.
“His entire right kidney is lighting up with a tumor,” Dr. Keen had told me. He was keeping an eye on Leif’s test results. “It’s unfortunate he languished so long before getting an appointment at Hutch. I think the cancer is progressing rapidly.” Unfortunate is a grave understatement, I think. “The weaker he gets, the less he’ll be able to tolerate any treatment.”
~
81 days after Leif was diagnosed with an incurable form of lymphoma, his Fred Hutch oncologist called him, her voice brimming with good news. Early on, she said she’d have additional tests run on his biopsy tissues; now she came back to say, “You don’t have mantle cell NHL. You have diffuse large B-cell lymphoma—which is curable!”
How can I quantify my gratitude for a doctor who didn’t take the path of least resistance by accepting another’s finding? Instead, she sent his tissue samples to Minneapolis, asking more experienced pathologists to run additional tests. Based on the correct diagnosis, she changed Leif’s chemo regimen so he’d get the most effective treatment for the specific type of cancer he has.
How common is the administrative gauntlet we faced? And how much muscle should it require for anyone get the care they need?
And how often does an oncologist get to deliver good news like that?
Image: licensed under the Creative Commons Attribution-Share Alike 4.0 International license.