Yep, I’m still here.
Last week, I recorded a talk for The Cholangiocarcinoma Foundation, and I want to share it with you — the text, that is. In January, before masks and social distancing; before stimulus checks and cancelled airline flights; back before the murders of George Floyd and Breonna Taylor and Rayshard Brooks lifted a veil and made me realize that doing nothing was no longer an option for me… before all of that, the CCF asked if I would attend their annual conference in Salt Lake City and speak from a caregiver’s perspective.
When March rolled around and the Foundation prudently cancelled the conference, I was relieved to compartmentalize that part of my life, so I could focus on remote learning and teaching Jake and Kate at home. But the Foundation rallied to plan an entirely remote conference this year. And when I had to reserve my spot for my ‘talk’, I hesitantly reopened that compartment. Instead of opening a Pandora’s box, I surprisingly felt comforted by what was inside.
So here is what I said. I don’t know if I will be able to eventually share the video, but if I can, I will. Although I’ve never been to the CCF conference, I was told that the audience includes patients, caregivers, doctors, researchers, and pharma.
Thank you to the Cholangiocarcinoma Foundation for the coordination, dedication, and love poured into making this conference completely virtual for the first time. Thank you for allowing me to join you.
I will guess that I am not unlike many of the other patients and caregivers in attendance: several years ago, I could not have foreseen myself as part of this community. Three years ago, I had never heard the phrase percutaneous drain. I thought jaundice was something only babies got when they were born. I vaguely remembered learning about bile ducts in high school science class. And I definitely had never heard of KRAS or a paracentesis or ascites. But a new and unwanted chapter of my life began when my husband turned yellow one Saturday morning in April of 2018.
But before he turned yellow… before I started using words like paracentesis and ascites, I was going about my normal life as a wife, mother, and high school English teacher. One of the many reasons I love being an English teacher is because I get to read, study, and bear witness to other people’s stories. And not just stories in books, but the stories of people I love, and even my own life story.
I have enjoyed being a main character in my life story — even with, and perhaps even because of, the bittersweet chapters. My first chapter began in the early 80s, but I’ll skip ahead to the year 2000, when my college chapter began. It was going to be tough to beat my freshman year, with Drew Brees as our quarterback and a Rose Bowl appearance. But during my sophomore year, I became a tour guide for the office of admissions, and was at a routine training session when I looked across the room and spied a 6’3” guy, who was as sarcastic as he was cute. I was hooked. Eight years later, we got married.
I often told Jeff that we were as close to ‘happily ever after’ as they come. We both knew that love and marriage took work, but it was that mutual investment that made our love run deep. I loved Jeff as a friend and as partner, and when we became parents, that love became an ocean.
Our chapter as parents began in 2014, when our son, Jake, was born on a hot summer afternoon in August. As the nurse wiped his head, Jeff and I were both surprised to hear her say, “You have a redhead!” “What?!” we both said. But there he was, like he was always supposed to be, our little red-headed Jake.
And then, that chapter continued quickly when Kate was born in 2016 on an unusually warm spring day in April. As the nurse wiped her head, she said, “You have a redhead!” And I said, “Another one?!” But there she was, like she was always supposed to be, our little red-headed Kate.
Life was busy, and full of crying — from both the kids and us — but also all of the joy, challenges, and catawampus of being young parents. Jeff had a demanding job as an engineer and we had our fair share of fights about work-life balance; about the demands of parenting and of financial choices; and about whether or not Jeff should drive six hours round trip for a bottle of rare bourbon called Pappy Van Winkle. (The answer was, ‘Yes.’)
But the chapter of our lives in 2017 was one of my life’s sweetest chapters. I was content in the deepest way — Jeff and I had made choices that gave us spiritual footing; financial security; parental joy; and true love as a married couple. Kate didn’t need a bottle anymore; both kids were napping regularly. Life was good.
I expected that chapter to last much longer than it did. But the plot took a sharp turn in April of 2018. As I was furiously balancing grading papers and gathering last-minute items for Kate’s second birthday, Jeff complained of abdominal pain. A triathlete and a dedicated healthy eater, Jeff seemed like the last person to have any sort of serious health issue. We woke up on a Saturday morning, and Jeff said, “Do I look yellow to you?” And – with those words – an unexpected and unwanted chapter of our lives began. For Jeff, it would be the penultimate chapter. For me, it would mark a turning point in a narrative that would continue after Jeff’s had ended.
As most of you likely have seminal moments in relation to this disease, I will never forget when Jeff told me he had cancer. After waking up yellow, Jeff had gone to the emergency department. Nothing showed up on an ultrasound, so he was sent home and told to follow up with his primary care physician. This lead to a CT scan, which lead to a biopsy which lead to an initial diagnosis of liver cancer. Jeff got the phone call on a Saturday morning, and for two days, he didn’t tell a soul in the world. His bilirubin climbing to 32, he was itchy and miserable, but I was still blissfully ignorant and hopeful that all of this was a blip on the radar. In my world, the most important things involved paper plates, catering, and pictures for Kate’s second birthday party.
I went to school that Monday, and at some point between 5th and 6th period, my department chair came in my classroom and told me that Jeff was at school. And I knew.
She walked me to the door. I walked from the door to Jeff’s car, which was waiting next to the curb. I got in his 2011 Nissan Altima and he said, “Bad news, Jess. I have liver cancer.”
I screamed. The news was apocalyptic. I knew that – no matter what happened – life would never be the same. I knew that – in that moment – Jeff’s and my relationship had fundamentally shifted. I had watched my grandmother die from lung cancer, and I knew that what lay ahead was painful. After I stopped screaming, I collected myself. I looked at Jeff and said, “Okay — what do we do?”
We scheduled an appointment with the University of Chicago. Then, I sat on the couch and cried. I cried, and Jeff held me. He looked at me and said, “Jess, I’m not dying.” But I felt like he was already dissolving in front of me. And just like we had to do so many times during the eight months he lived with cholangiocarcinoma — and just as I have had to do so many times in the years since he died — we put all of our emotions on hold, and picked up our two-year-old daughter and three-year-old son from school. They — like I had been just hours prior — were still blissfully ignorant. In the weeks that would come, Jeff and I navigated new territory of how to help young children with grief. We explained what a percutaneous drain was. We explained why Daddy couldn’t hold them and couldn’t wrestle with them. Immediately, Cancer had become the main character in our chapter, and I wanted it out.
Even as we made the hour-long trek to University of Chicago for the first time, I partially convinced myself that they were going to tell us it was all a huge mistake. Instead, they clarified the diagnosis — it wasn’t liver cancer: it was bile duct cancer. As Jeff’s care team — who turned out to be humans first, and doctors second — explained the anatomy of a bile duct and liver; as they explained the difference between intrahepatic and klatskin and extrahepatic tumors — I kept wanting to interrupt them and say, “You have the wrong person!” We drove home, talking about options, and I said, “What do you want? It’s your body.” And I loved him when he looked at me and said, “I know it’s my body. But it’s our lives.”
Any chapter with Cancer as a main character is disorienting — because most of the characters are new and come out of nowhere. Doctors are main characters. Nurses are main characters. Pharmaceutical companies are main characters. Drugs are main characters, and their names that look like alphabet soup. Paradoxically, the number of characters shrinks and tightens in a way that is both liberating and suffocating. Searching for foreshadowing, I clung tightly to Jeff’s doctors, overanalyzing their facial expressions and voice inflection. I searched endlessly for nameless characters who were conducting clinical trials that might change where I saw our narrative heading. A cornucopia of new cast members had joined my story. I was full of rage for having not invited them in, but deeply humbled and grateful that Jeff’s care team at U of C turned out to be characters I’d want to know anyway — people who care deeply for the humans in front of them, and the families that they go home to.
After Jeff’s diagnosis, it seemed that all that could go wrong, was going wrong. He had a portal vein thrombosis; a primary mutation of KRAS; spontaneous bacterial peritonitis; ascites; varices; and infection after infection. In fact, of the 231 days that Jeff knew he had cholangiocarcinoma, he spent 54% of those days in or at the hospital. He spent 27% of those nights in the hospital. He had 15 emergency department visits.
Early in this chapter of our lives, Jeff and I agreed that we would keep the kids’ lives as normal as possible. For a good portion of his diagnosis – mercifully – I was on summer break. I kept our kids enrolled in preschool, and I would drop them off in the morning before driving to UChicago or coming home to care for Jeff. Prioritizing the kids over time with each other was something both of us knew was important, but it was hard. I love my children and unquestioningly put them first, but I missed my husband. I resented that Jeff couldn’t help, and I resented our kids for needing help. I would spend two hours at night, putting our kids to bed, only to come downstairs, and administer at-home IV antibiotics or provide moral support while Jeff gave himself another shot of Lovenox. Had it not been for our kids, I would have lived at the hospital. But the truth is that our kids kept cancer from swallowing me whole.
As 2018 waned, and the leaves began to change, so did Jeff. Although he didn’t want to admit it, his final chapter was beginning. He lost his ability to walk unassisted. His ascites increased even as he looked like a skeleton from the sternum, up. I eased up on normalcy for the kids, and started bringing them to the hospital whenever I could. One of my favorite memories is trick-or-treating on Halloween — the kids walked around the oncology floor at University of Chicago, surprising doctors and fellows and nurses with candy. Jeff dressed as the old man from Up.
On Thanksgiving – after playing a round of CatchPhrase and going back for seconds of turkey and pumpkin pie – Jeff and I sat on the edge of our bed, side-by-side, weighted down by the heavy air around us. I was thankful when Jeff finally said, “I think this will be my last Thanksgiving.” I said that I thought so too. “What will you do?” he asked. And I said, “I will find a way to be happy.”
Jeff died on a sunny morning, a week before Christmas and three days before my 38th birthday. We buried him before Christmas, on a cold, overcast day. Jake and Kate brought shovels to his burial, and shoveled dirt onto his casket. Maybe because one of their earliest chapters introduces death as a main character, they are tender, curious humans who know that there is something beyond us all. Jeff’s death seems too high a price to pay for any lesson – even that one – but it is a gift that he has given all three of us.
After Jeff died, I questioned whether I could live up to what I had told him at Thanksgiving. I wondered if I could ever be happy again. I doubted my ability to raise two children, and felt like I walked around with a scarlet W on my chest, and everyone knew that I was a widow, a single parent, and that I had no idea what I was doing.
Make no mistake about it: many of us are here because this chapter of our lives feels like someone put us in a Vitamix blender and hit purée. And even though many of us are here because we choose to learn from this — to make it meaningful and to redeem the pain by participating in this community — most – if not all – of us would give it back to erase this chapter and start a different one. But we have made peace with the fact that we can’t barter that trade. And so, we’ve chosen to redeem the irredeemable.
Time hasn’t healed all wounds, but I can say that I am content. I am resilient. I find joy in things, and so do my children. This chapter of my life has the same main character, but she is a different version of herself. Wherever Jeff is, his story continues. He will always be a main character in my story, even though he doesn’t have any more dialogue. The headstone that bears Jeff’s name also bears mine.
Since his death, the tone of my story has shifted — and, as I always tell my students — when the tone shifts, pay attention. Something has happened. Something important and meaningful and usually, something we can learn from.
The kids and I are doing better than I thought we would. Life has a way of finding a way, and I have used the stories of others to guide me with how to walk the path of grief with my children. Now, Jake is five, and about to start kindergarten. Kate is four, and is in preschool. If you were to talk to them, they would tell you that their Daddy died from bile duct cancer. They would also tell you that he loved to play airplane, and that he got in trouble as a teenager when his car caught on fire. They would tell you that he loved concerts; that he could waterski on one ski; that he loved snowboarding; and that he held them as babies in the red recliner chair. They would tell you that he loved the snowblower; that he swam in the baby pool with them; and that he could run reeeeaaaalllly far. Their memories may not be their own, but stories have a powerful way of becoming part of our identity — and my kids feel connected to their father even though he died before they could remember him.
It is strange to say that I was excited to be invited to join you, but I was… and I know that it’s not because I rejoice in our shared suffering, but because our stories are connected. We are characters in each others’ stories, regardless of whether we have names or dialogue.
Thank you for inviting me here to share my story with you. I am humbled to bear witness to yours.