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The Year I Was Supposed to Die
At 42, with young kids, I got a devastating diagnosis. I knew I was in for a harrowing journey. I didn’t know quite what kind.
In the fall of 2022, when I was 42 and living with my wife and three young kids in a small town in northwest Minnesota, a specialist at an unfamiliar hospital approached us with some test results. He seemed genuinely shaken. “I don’t want to scare you guys,” he said, “but this is the kind of thing where you are going to want to have your affairs in order.”
I’d spent much of the summer trying to ignore a bizarre constellation of symptoms: dark pee, constant full-body itching, an odd yellowish cast to my skin that I convinced myself was just a trick of the cheap LED light bulbs we had gotten from Amazon. Then, on the last weekend before Labor Day, the whites of my eyes turned a bright, unsettling yellow, the type of thing it’s impossible to rationalize away. Some frantic Googling suggested that jaundice, brought on by a gallstone, was the most likely explanation.
I had gone to the local ER, expecting a run-of-the-mill gallbladder removal that would have me back at work by Monday. Instead, they shipped me down to the big regional hospital in Fargo, North Dakota, where an MRI showed a gallstone, yes, but also a 9.5-centimeter tumor wrapped tightly around the main bile duct and several major blood vessels in the liver.
The gastrointestinal specialist was in the room with my wife and me when the radiology report came back. I watched his face drop and his entire demeanor change as he read through it for the first time.
He was an affable guy roughly the same age as me. “We just don’t see this in guys our age,” he said.
I was diagnosed with cholangiocarcinoma, or cancer of the bile duct. As far as cancers go, it’s an especially brutal one: The five-year survival rate is around 10 percent, and most people diagnosed with it are dead within a year. That was going to be me.
Cholangiocarcinoma is deadly in large part because it is so rare: There are only about 8,000 new cases in the U.S. each year. Cancer treatment advances patient by patient, clinical trial by clinical trial. Each patient is a new data point. When there are few data points, the science advances very slowly.
“There are some chemo and radiation therapies that can slow it down a little bit, maybe buy you some extra time, but nothing that can kill it,” the GI doc explained. “The only way to cure it is to cut it out completely, either by surgically resecting the liver or doing a full-on transplant, but by the time most people are showing symptoms, it’s too late for either of those.”
“Is it too late for me?” I asked.
My wife, Briana, was by my side during that entire hospital stay, and later that night, she went out to the parking lot to sit in the darkened car and scream. As it happened, she had worked in the disability policy office of the Social Security Administration before we moved to Minnesota, and helped spearhead the agency’s compassionate allowances program, guaranteeing rapid approvals for patients with such hopeless diagnoses that they were usually dead before the regular paperwork went through. Cholangiocarcinoma was one of them.
By the end of the visit, the GI specialist had determined that my tumor was under the transplant limit by just half a centimeter. He sent a scope up my bile duct and biopsied some cells from the duct walls and a nearby bile duct to confirm the radiologist’s suspicion. Confusingly, they all came back negative.
The uncertainty was maddening: If there was actually a tumor in there, why weren’t the biopsies showing it? Other doctors told me that the mass was probably on the outside of the ducts, and that if that was the case, the cell scrapings from inside the duct were bound to come back negative. They wanted to directly biopsy the tumor from the outside, passing a needle into my abdomen and through the liver to reach it.
This made the GI specialist furious: “Those guys don’t know what they’re talking about,” he said. “If it’s really cholangiocarcinoma, and at this point I don’t think there’s anything else it can be, your only option is the liver transplant. And if you puncture the liver with a biopsy needle, they won’t do the transplant, because the tumor will grow back right along the needle path.”
He told me if I wanted to have a chance of beating this thing, I needed to go to the Mayo Clinic, so I did. I knew I was in for a harrowing ride. I had no idea quite what kind.
Mayo was in Rochester, six hours south of our home in Red Lake Falls. I had a lot of time to myself on the road to think about things. When I was 20, I had gone through a similar medical crisis after I got a chest X-ray to investigate a persistent cough, and it ended up showing a mass the size of a softball in my right lung. Everyone around me was convinced it was cancer, but I was certain, with the serene confidence of a 20-year-old, that it would actually be benign. I didn’t worry about dying at all: It was inconceivable that I could be on the brink of death in the spring of my sophomore year of college, when the flowers were blooming on campus and I had finals to think about.
I was right, in the end. A team of surgeons opened up my chest cavity and removed the mass, along with about half of my right lung. The pathology report showed that it was benign, likely just a bizarre, out-of-control inflammatory response to an unknown irritant that might have happened years earlier. It was a medical oddity, a statistical fluke. The surgeons presented my case at a conference later that year.
This time felt different, though. I was middle-aged and had a family, and I had seen enough of my peers pass away to know that I wasn’t invincible. Summer was crashing to an end, the flowers in our yard were dying, and there was a cold bite to the upper Midwestern air. Death seemed very much a real possibility.
I thought about it constantly, of wasting away in front of my kids and having to decide that enough was enough and it was time to pull the plug. Our youngest was 5, and the twins were 9, and I wondered how they’d remember me, and whether the horrible final days would crowd out memories of the good times. I wondered what my last lucid moments would be like—what I wanted to say to them, and what I would say to my wife. Which conversation would I have first? Would it be better to do it all at once, or would there be things I’d want to say privately to each of them?
I worried about pain too. The GI specialist had placed stents in my liver to open up the bile ducts, and at the moment, I felt more or less normal. But how long would that last? When would the tumor get big enough that it would start to hurt? Would it metastasize elsewhere, shutting down organs or colonizing my bones? What would that feel like? Would there come a day I’d recognize after the fact as the last good day before pain simply took over my life?
I joined private Facebook groups for bile-duct cancer patients and their caregivers. There was something therapeutic about swapping medical horror stories with strangers who knew exactly what I was going through. But after a while, I had to stop visiting. The anguish of the people nearing the end was too raw for me to handle.
Maybe when I was closer to the end myself, I would be more receptive to their words, less wrapped up in my own shit and ready to make peace with whatever was coming. But I still had a sliver of hope of beating this thing, and I needed to hold on to it as tightly as I could.
The liver-transplant protocol for bile-duct cancer was developed at the Mayo Clinic in the 1990s. It involves a month of inpatient chemotherapy and radiation, followed by the transplant itself and months of recovery.
“The general idea is that the chemo and radiation keep the tumor from metastasizing long enough for us to find you a liver match,” the Mayo liver specialist explained. About half of the cancer patients entering the program dropped out prior to transplant due to disease progression or to their bodies being unable to withstand the intense chemoradiation bombardment. And among those who got the transplant, only about half would still be alive five years later.
Hellacious, debilitating complications were more or less routine, and sometimes fatal. My age and good health were factors in my favor, the doctor said. PET scans showed no metastases anywhere in my body. But the size of the tumor was a major concern: just a hair under 10 centimeters along its longest axis, the upper limit of what was considered a transplantable tumor.
“It’s kind of an arbitrary cutoff,” she said. “But at 10 centimeters, it just becomes much more likely that the cancer is already growing undetected in other places. Now, we’ve measured your tumor every which way, and you’re not there yet, which is great. But if we pull this off, it’s going to be just under the wire.”
I asked her if what the Fargo doctor had said was true, about direct biopsies causing the cancer to spread.
“That doctor saved your life,” she said bluntly. “If you had gotten a needle biopsy, we would be having a very different conversation right now, and unfortunately, we see that happen quite a bit.”
Doctors at Mayo had done a trial back in the early days of the protocol, she said, to see if they could safely get a direct biopsy before putting patients under the knife. But the tumor came back along the needle path in every single one of the first group of patients entering the trial, and they had had to end it early on ethical grounds.
Because of that, many patients who get surgery for suspected bile-duct cancer do so without a confirming biopsy, she told me. I asked if they ever transplanted someone’s liver only to find out that the tumor wasn’t what they had thought it was.
“I’ve been doing this for about 20 years,” she said. “There was one case. One case. We transplanted a lady’s liver, and it ended up being a lymphoma or something weird like that.” But that was a freak occurrence, she said. One in a million. An outlier so extreme it was statistically indistinguishable from zero.
Given that I had already played my 1-in-a-million card on the mass in my lung, it didn’t seem wise to pin my hopes on this.
What would happen if I just didn’t get the transplant? I asked.
“Well,” she said, “we would do palliative chemotherapy, try to buy you some extra time.”
“Months, maybe a year if you’re lucky,” she said. “If I had 10 patients just like you, I’d expect to still be seeing four of them a year from now, and then maybe one or two the year after that, and then—that’s it, really. You’re young. You’re healthy. Your body could probably withstand more-aggressive treatment, keep the cancer at bay for a little longer. But the problem is that short of cutting the thing out completely, none of these treatments work very well.”
And that was the crux of it: With a transplant, my odds of surviving until the twins’ high school graduation were roughly 1 in 4. Without it, I would be dead before they got to middle school.
“Then let’s do a liver transplant,” I said.
Looking back at that period of our lives, I’m not sure how Briana and I did it, how we kept getting out of bed and sending the kids off to school and going to work as if the whole life we had built together wasn’t crashing down on top of us.
