In the autumn of 2022, I found myself, at 42, sitting with my wife and our three small children in a quiet town in northwest Minnesota. A doctor at a new hospital approached us, visibly disturbed. He hesitated and said, “I don’t want to frighten you, but you might need to get your affairs in order.”
Throughout the summer, I’d been trying to overlook some odd symptoms: dark urine, relentless itching, and a strange yellow tint to my skin that I foolishly attributed to our cheap LED light bulbs. But then, the weekend before Labor Day, my eyes turned a vivid yellow—something I couldn’t ignore. A frantic search online suggested jaundice, likely caused by a gallstone, as the culprit.
When I visited the local ER, I expected a straightforward gallbladder surgery that would have me back to work by Monday. Instead, they transferred me to a larger hospital in Fargo, North Dakota. There, an MRI revealed not just a gallstone but also a tumor, measuring 9.5 centimeters, tightly wrapped around my bile duct and major blood vessels in my liver.
The gastrointestinal doctor was in the room with us when we received the radiology report. I witnessed his expression change dramatically as he read through it for the first time.
He was friendly and about my age. “We don’t typically see this in men our age,” he remarked.
Diagnosed with cholangiocarcinoma, or bile duct cancer, I learned it’s an especially aggressive form of cancer. The five-year survival rate is around 10 percent, and most who get this diagnosis aren’t expected to live past a year. I feared, quite reasonably, that I might be one of them.
The grim statistics were in part due to its rarity: only about 8,000 new cases diagnosed each year in the U.S. Cancer treatment progresses slowly, one patient at a time, each providing a new data point. With so few cases, it didn’t surprise me that we weren’t making much headway in the science.
“There are treatments like chemotherapy and radiation that might slow things down, maybe extend your time a bit,” the GI doctor explained. “But the only way to cure it is complete removal, through surgery or a transplant. Unfortunately, most patients are too far gone by the time symptoms appear.”
“Is it too late for me?” I questioned.
“I don’t know,” he replied.
My wife, Briana, remained by my side during my hospital stay. That night, overwhelmed, she went to the parking lot, sat in our car, and screamed. Before moving to Minnesota, she had worked with the Social Security Administration and helped create a program for fast approvals of claims for patients with dire diagnoses. Cholangiocarcinoma was included.
Eventually, the GI doctor confirmed my tumor was just under the transplant limit. He performed a scope procedure to take cell samples from the bile ducts, but oddly, all results came back negative.
This was baffling: if there was indeed a tumor, why didn’t the biopsies show it? Other doctors suggested the mass could be on the outside of the ducts, and thus internal testing would miss it. They proposed a needle biopsy through my abdomen and into the liver to access the tumor.
This infuriated the GI specialist. “Those guys don’t understand,” he stated firmly. “If it’s truly cholangiocarcinoma—and I don’t think it could be anything else—you need a liver transplant. If you stick a needle into the liver, they won’t perform the transplant, as the tumor will spread along the path of the needle.”
He urged me to go to the Mayo Clinic for a chance at fighting this. I knew the journey ahead would be difficult, though I couldn’t quite grasp how difficult.
Reaching Mayo in Rochester took about six hours, which gave me plenty of time to ponder everything. At 20, I faced a similar health crisis when a chest X-ray revealed a massive mass in my lung. Everyone thought it was cancer, but I was convinced it wouldn’t be. I didn’t worry about death back then; it seemed impossible while I was just a sophomore in college with finals approaching.
Fortunately, I was right. Surgeons removed the mass, and pathology confirmed it was benign—likely just an odd inflammatory response. It was a fluke, something the surgeons showcased at a conference later.
This situation felt vastly different, though. Now, I was middle-aged with a family and had lost friends to cancer. Fall was settling in, the flowers in our yard were wilting, and each chill in the air reminded me of death’s reality.
I often thought about the prospect of slowly deteriorating in front of my kids, eventually making the heart-wrenching decision to stop treatment. Our youngest was just 5, while the twins were 9, and I worried about how they would remember me—whether their last memories would overshadow the good times we shared. I thought of the conversations I would need to have—what I would say to each of them and if it should be together or separately.
With a transplant, my chances of seeing my twins graduate high school were about 1 in 4. Without it, I wouldn’t even survive until they reached middle school.
I also pondered the pain. The GI doctor had placed stents in my liver to alleviate bile duct obstructions, making me feel relatively normal at the moment. But how long would that last? When would the tumor grow sufficient to cause discomfort? Would it spread to other organs? I imagined a day arriving when I’d recognize it as my last good day before pain took over.
I joined cancer support groups on Facebook, finding solace in sharing medical horror stories with others who understood. Yet, over time, I had to back away—the pain and suffering shared by those nearing the end was overwhelming.
Perhaps, when faced with my own end, I’d be more capable of listening and accepting realities. But I still had a glimmer of hope, one I clung to fiercely.
The liver transplant protocol for bile duct cancer originated at Mayo in the ’90s, requiring a month of in-patient chemotherapy and radiation, followed by the surgery and extensive recovery.
“The idea is that the chemo and radiation keep the tumor from spreading long enough for us to find you a suitable liver,” the Mayo specialist explained. Unfortunately, about half the patients drop out before the transplant, either due to disease progression or an inability to handle the intense pre-surgery treatment. Of those who do have the transplant, only around half survive for five more years.
Complications can be severe, even fatal. Thankfully, my age and good health worked in my favor; PET scans revealed no metastasis. Yet, the size of my tumor was a pressing issue. It measured just under 10 centimeters, which was the upper limit for transplant eligibility.
“It’s kind of a random cutoff,” she said. “At 10 centimeters, it becomes much more likely that the cancer is spreading elsewhere. We’ve measured your tumor carefully, and you’re not there yet, which is promising. But if we proceed, it’s going to be cutting it very close.”
I asked her if the Fargo doctor’s warning about direct biopsies leading to cancer spread was valid.
“That doctor saved your life,” she said plainly. “If you had received a needle biopsy, our conversation would be very different right now—and sadly, we see this happen often.”
She mentioned a trial conducted in the early days of the protocol to safely perform direct biopsies before surgery. However, results showed tumors routinely returned along the needle paths, leading to the termination of the study for ethical reasons.
As a result, many patients having surgery for suspected bile duct cancer do so without confirming biopsies, she explained. I asked if they ever transplanted a liver only to discover post-operation that the tumor was misidentified.
“In my 20 years of practice, that has happened once,” she replied. “A woman received a liver transplant, only to find it was a lymphoma or something unusual. But that’s an anomaly—one in a million.”
Given that I had already defied odds once, I felt it wasn’t wise to bank on this luck.
I was curious about what would happen if I opted against the transplant.
“Well, we would focus on palliative chemotherapy, trying to extend your life a bit,” she answered.
“How long would that give me?” I pressed.
“Maybe months, or a year if you’re fortunate,” she remarked. “If I had ten patients like you, I’d expect only about four to be around a year later, with perhaps one or two the next year. You’re young and healthy, so your body might endure more aggressive treatment, but the truth is, without the tumor’s removal, none of these therapies are very effective.”
And that was the dilemma: with a transplant, my chances of living to see my twins graduate high school were roughly 1 in 4. Without it, I wouldn’t survive to see them even reach middle school.
“Then let’s proceed with the liver transplant,” I decided.
Looking back on that time, I’m still not sure how Briana and I managed to keep functioning—getting out of bed, sending the kids to school, and going to work, as though life itself wasn’t crumbling around us.
We talked to the kids about my diagnosis without delving into probabilities or the grim implications. We explained that dad’s liver was impacted by cancer, but the doctors at Mayo were going to replace it. They were somewhat familiar with cancer, given that one of the twins’ classmates had bravely battled a different cancer last year. The classmate thrived after treatment at Mayo, so we reassured them I would too.
Curious about connections, the kids asked if our cancers were linked, if perhaps our town had something in the air or water that caused these issues. There were certainly many cancer cases locally; flyers for fundraisers for those diagnosed often crowd the bulletin boards outside local shops.
Though I examined local cancer data on the state health department’s website and found nothing particular, it initiated a stream of thoughts. Pinpointing exact causes of cancer is notoriously tricky. Outside obvious factors like smoking leading to lung cancer, establishing causality is nearly impossible.
Still, various studies have reported possible associations between farm chemical exposure and different types of cancer. One suggested living in a pesticide-exposed community could elevate cancer risk comparably to smoking; others indicated that waterborne nitrates from runoff may also influence cancer incidences.
Our town, with about 1,400 residents, was enveloped by farmland, and the chemical smell from nearby spraying often filled the air.
“It’s those damn farmers,” I would mutter, searching for a target for my frustration. I wasn’t entirely convinced but didn’t dwell on whether I would’ve fallen ill had we stayed elsewhere.
To keep my mind occupied, I researched cancer and liver transplants. Numerous studies demonstrated that patients in better physical condition tended to fare better regarding both cancer and transplant outcomes. So, I set up a stationary bike in the garage and began exercising obsessively, logging mile after mile, day after day.
One article proposed that exercise enables blood vessels to infiltrate tumors, allowing chemotherapy to penetrate and kill them from within. I imagined my capillaries expanding within the tumor, surrendering by the heartbeat and each pedal stroke—finally, a counteroffensive after weeks of quiet suffering.
Your time is up, you little bastard. I was resolved to defeat this cancer.
Before getting officially placed on the transplant list, I underwent a weeklong evaluation at Mayo. Teams of specialists examined everything about me—physically, mentally, socially—to ensure I was fit enough for what lay ahead.
For someone in my situation, it was mostly a formality, the liver team noted. They were mainly concerned about size and location of the tumor, which they confirmed with prior imaging.
Briana accompanied me to Rochester. We booked a hotel room nearby and attempted to recreate the romantic getaway we had long desired since having kids. We dined at nice spots, went shopping, and explored museums while juggling hospital trips for tests and procedures.
As the week neared its end, we had a rare day off and visited a local park with trails and fossils. That morning, I’d felt a dull ache in my upper abdomen over where the tumor resided. I’d taken some Advil and tried to ignore it, but it escalated throughout the day. By night, despite a fitful sleep, I awakened in sheer agony, the dull ache morphing into sharp, stabbing pain.
Until that moment, I had been largely free from major discomfort, and I was unprepared for such abrupt and intense pain. Was this the beginning of the end? Had the tumor finally claimed its hold in a way my body couldn’t counter? Would every subsequent day deliver nothing but suffering until the transplant or my demise arrived?
Briana managed to calm me down in that dark hotel room, bringing me back to sleep. The next morning, the pain had dulled enough for me to move around. I called the transplant team, and they hurried me to the hospital for a quick CT scan, a prescription for painkillers, and antibiotics, while we awaited the last appointment with the surgeon who would perform the transplant.
This meeting was meant to be routine, primarily covering how he would conduct the surgery. However, when we arrived at the office, he bore the same stunned expression as the initial GI doctor encountered when reading my initial report. He took a moment to gather himself before speaking.
I had lived so much, but I was 42 and dying. I should have had a midlife crisis in my 20s. I would never know what it felt like to be old.
He began with reassuring news. The CT scan revealed my pain stemmed from the gallstone, which had shifted and caused a small infection. This would likely resolve soon.
“However,” he continued, “we also had another look at your tumor. Along this angle, it’s evidently longer than 10 centimeters.”
Briana gasped.
“And what does that imply?” I inquired.
“We’ve tried surpassing that limit before,” he explained. “In every instance, when we pushed past 10 centimeters, the cancer recurred. You need to understand how devastating it is for a patient and their family to go through the rigors of chemo, radiation, and transplant, only to have the cancer return. It’s devastating.”
“I want to clarify what you’re saying,” Briana insisted. “There won’t be a transplant?”
“I’m so sorry,” he replied earnestly. “We can’t proceed.”
I asked if there was any alternative plan, any last-ditch effort that could save me. But a transplant was indeed my only option, which now didn’t seem possible.
November had always been a month I disliked—gray skies, frigid drizzle, and a prelude to harsh winter.
Driving back to Red Lake Falls, we felt hollow, too fatigued even to cry. This was it—after all the hope, the countless tests, my desperate attempts to outpace the tumor. It all seemed pointless. I was still facing death.
It was merely a 1-in-4 chance. What had we been thinking? I’d once beaten the odds with my lung tumor at 20, but now it felt as though fate had come for its due. I’d managed to stretch my life out for 22 more years, and that seemed adequate. I’d found love and built a family, achieved many of my dreams. Wasn’t that enough?
I often wrestled with that question. But of course, it wasn’t. It could never be enough. I had so much to live for, yet here I was at 42, dying. I should have grappled with a midlife crisis two decades ago; now, I’d never know old age.
The thought of Briana and our kids continuing without me tormented me. I feared she wouldn’t want to raise three young boys alone. Eventually, she would have to move on, and someone else would fill my role—sharing laughter and love I hoped to give them. On yearly anniversaries, Briana would post tributes on social media, and the world would remember me through her reflections, yet I wanted my life to remain intimately mine.
“My father died when I was 5,” my son would repeat someday in his life, reflecting on his memories of my illness, wishing he remembered the happier times. It wasn’t a productive way to think, but I couldn’t help myself.
Some years ago, a now-famous New York Times essay depicted a woman facing cancer who wanted to assure others how wonderful her husband was. In her tale, he would find companionship again after she passed. It was beautiful and infused with humor and grace, while I felt none of that for myself. I wanted to hold tightly what I had, not let anyone else know how exceptional Briana and the kids were, how much they meant to me. This life wasn’t for anyone else.
Briana and I began exploring end-of-life care options. I was horrified to learn that medical aid in dying wasn’t available in Minnesota. Most states that allowed such measures had residency requirements, meaning I couldn’t simply go to Oregon in my final days. I realized I would have to endure the whole process, likely sedated by painkillers.
How was it that I would die in Minnesota, of all places? I had ended up here because of a ridiculous article I’d written a decade earlier.
“Reporter moves to the town labeled America’s worst place,” made for a great viral story; “Reporter succumbs to cancer in the same town” felt like cosmic irony that I couldn’t process.
Yet, knowing I wouldn’t have to fret over mundane tasks like work and bills in my final days was oddly liberating. In the game Hades, Eurydice sings about peace found in the underworld, free from earthly burdens. I wished for that experience during my end, even contemplating asking Briana to have the song played in the hospice room. I imagined she would vehemently oppose it.
In truth, Briana was suffering more than I was. I wouldn’t have to navigate the aftermath of my passing; she would. I was leaving her to shoulder the burden of guiding our children through it all.
During our younger years, I playfully suggested that if I were to pass, I wanted my ashes turned into a gem for her to wear. I’d tease about spending the afterlife close to her.
“Look on the bright side,” I joked during that wretched November. “You’ll finally get to make me into that gem I always wanted.”
Finally, I began to feel like a true cancer patient. The weight loss and fatigue engulfed me. I tried exercising on the stationary bike but struggled to keep up with previous achievements.
A few weeks after the transplant evaluation fell through, I returned to Mayo for a needle biopsy of the tumor. They were prepared for predictability, yet occasionally tumors had mutations making them more susceptible to treatments, allowing some patients to gain years instead of months.
“Are we no longer alarmed about the cancer spreading?” I asked.
“It’s already progressing,” he replied gently. “We just can’t visualize it yet.”
The meeting with the palliative oncologist was set for the following week. I was uncertain about chemo—what’s the value of a few extra months if they were plagued with misery? Perhaps it would be better to enjoy whatever time I had left—liquidate my 401(k) and go out with vibrancy. I had always wanted a family trip to Hawaii. Wouldn’t the kids love that?
That Monday, a day before Thanksgiving, Briana and I sat in the virtual waiting room as my biopsy results were expected. When my phone pinged with the report, I opened it, but it made no sense. It was lengthy, with contributions from many individuals. Briana urged me to share what it said.
“I can’t make it out,” I replied. “Something about hematology and lymphoma?”
“Lymphoma? What does that even mean?”
“Your guess is as good as mine,” I said, closing the app. “Maybe I have two cancers now.” A dark sense of irony settled in within me; bad news had become so routine that I couldn’t even process the possibility of good news.
Suddenly, my phone rang. It was one of the liver doctors, and he sounded rushed. “Are you seated?” he asked.
“Sure,” I replied. “I’m perpetually exhausted. I’m practically always sitting.”
“Okay, the biopsy results are in, and you won’t believe this,” he began. “We had to confirm with hematology because we didn’t want to relay the information unless we were entirely certain. You do not have bile duct cancer. The tumor is a lymphoma.”
“Could you say that again?” I asked. He repeated it. “Are you serious?”
“Dead serious. Now listen, I’m about to bombard you with numerous figures, but there’s only one critical detail: we can cure this. We can heal you. You’re going to be okay.”
Briana broke down in tears. “Lymphoma isn’t on the compassionate allowance list,” she murmured. I still couldn’t fully grasp what I had just heard. “And there’s no mention of cholangiocarcinoma? Are you absolutely sure?”
“We’re confident in this.” the doctor assured. “It’s astonishing, but we’re positive. You’re going to be okay.”
The medical term is primary biliary non-Hodgkin lymphoma, which is exceedingly rare—only 43 documented cases globally since 1980. As far as I know, I’m the 44th.
If one must have cancer, non-Hodgkin lymphoma isn’t the worst option. Although classified as Stage 4 for being outside the lymphatic system, my doctor later explained that with lymphomas, stages aren’t as significant. Treatments are systemic, targeting tumors in any location. Most patients—around 80 percent—emerge from treatment cancer-free and lead ordinary lives.
So far, that has been my experience. I completed six rounds of chemotherapy over four months. Early imaging indicated my tumor had vanished by the second round, though they continued treatment for thoroughness. I like to think that my frantic exercise sessions in the weeks leading to the transplant assessment may have played a role.
By early 2025, I reached a monumental milestone: two years post-treatment without signs of recurrence, at which point risks of relapse diminished significantly. I no longer needed regular scans or check-ups.
For a time, I found myself ruminating on the “what ifs.” What if the tumor had been just a little smaller, allowing for transplant approval? What if my gallbladder hadn’t flared up that fateful night, initiating an additional CT scan? What if I had allowed the Fargo doctors to perform a direct needle biopsy?
But those events had unfolded as they did, and here I am.
“What’s next for you?” the Mayo hematologist asked at my final visit.
“In two days, we’re moving back to upstate New York, closer to family and civilization,” I shared.
Her eyebrows raised in surprise. “What would you have done if the scans hadn’t yielded positive results?”
“Honestly?” I admitted. “I hadn’t even considered that.”
