This summer I experienced a cruelty I hope no one should have to endure. On Saturday my mother passed away, just three months and two days after my dad did the same. 

I was in my office cubicle working on this newsletter when I got the news about my dad. He was a cancer survivor of nearly two decades, and he had been in and out of the ICU at least three times in recent years, so each call I would get from my mom or my aunt would cause a jump scare. He always bounced back from impossible odds, until this June, when he didn’t.  

After my dad passed, I went home to Illinois to help my mom, who was undergoing cancer treatments. She was diagnosed with lung cancer in 2018, but earlier this year, the treatments stopped being effective. I remember the call: Happy Mother’s Day, the drugs aren’t working anymore.

Except for two weeks when I went back to Washington, D.C., I spent most of my summer in my hometown of Springfield, effectively becoming full-time help for my mother, cooking her food, doing her laundry, and when things got really bad, helping her walk—all while working full time. She was on a new treatment regimen, Keytruda, and for some the drug has been a godsend. For her, it wasn’t able to stop the disease. 

I’ve found being back home for these couple months bittersweet. It has been heartbreaking to watch my mother decline, to see the woman who was always the life of the party, a former probation officer during the crack epidemic, hide from family pictures and say only a few words. But I am also glad I was there with her until the very end. She never wanted to talk about death, so instead, our last couple of conversations were about life, what I found digging into family history, the sleeping arrangements at Thanksgiving with our large family, the upcoming corn harvest, and the unique beauty of the Midwest. 

Easily the toughest part of all this was how my mom and my dad both shut down conversations about death. She barely talked about my dad once he passed, and she would always change the subject when it came to her own illness. Some years ago, I asked her why this part of life was so tough for her, why she never liked to discuss my dad’s cancer, and she told me that she wanted to shield me from the world. My dad nodded along in agreement. But I knew they were actually talking about themselves, not me.

However, it would be foolish on my part to deny that my career has been indelibly shaped by their medical histories. Yes, my dad was an economist who worked for the state of Illinois. But he was also a survivor of cancer largely because he was part of an experimental therapy. The reason I care about innovation is because I know what it means to extend good life years. 

My Dad’s Cancer.

My dad was diagnosed with non-squamous cell carcinoma when I was teenager, still living at home, and I initially coped with it by just turning away. My dad chewed tobacco for most of his adult life, but only did so after having a beer, which doctors said reduced his saliva and contributed to his developing neck cancer. The treatment was brutal and experimental. Chemo and radiation every other week for months, leaving him with third-degree burns in his mouth, until surgery, which cut out a third of his neck. The doctors who treated my dad also treated award-winning chef Grant Achatz, and they saved his life. 

At some point in those early months, when it was unclear whether my dad would survive, my mom had a brutal conversation with me about being more present. It was truly a reckoning. For years, I felt shame from that conversation, about how I reacted when my dad first got sick, but I now see the entire experience as her gift. She gave me what she never had—an ability to freely talk about life’s realities and to appreciate the limited time we all have.

A little over a decade later, my mom was diagnosed with lung cancer, and her prognosis was just as dire. We would later find out that her disease was caused by a defective ALK-positive gene. Thankfully, she could manage the disease by taking a tyrosine kinase inhibitor (TKI), a type of therapy that came to the market in the early 2000s. The drug was a lifesaver. It gave her the time to see her grandkids being born, to travel, and to live a normal life. 

In policy, we often talk about extending life years. But to me, even as I was living them, I knew those extra years my mom and dad had were incredibly precious. TKIs were nothing short of a miracle for my mom, but not everyone is so fortunate. Economist Alex Tabarrok calls it the invisible graveyard: 

I have long argued that the FDA has an incentive to delay the introduction of new drugs because approving a bad drug (Type I error) has more severe consequences for the FDA than does failing to approve a good drug (Type II error). In the former case at least some victims are identifiable and the New York Times writes stories about them and how they died because the FDA failed. In the latter case, when the FDA fails to approve a good drug, people die but the bodies are buried in an invisible graveyard.

Technology and innovation combined with smart regulatory regimes can extend lives. And there is lots of good evidence that it has. The likelihood of dying from cancer is on the decline, and I am hopeful that new advances in AI will keep on pushing death rates down. 

Still, it is everyone’s task to make those extra days meaningful. 

Almost two years ago, I pitched a version of this essay to both my parents and asked them if it was okay to talk about their medical histories. They both were incredibly supportive and told me that if our story can help others, then yes, please write about it. But when I tried to bring it up later, they both deflected.  

Though it may seem like this essay is an appeal for sympathy for me, it is not. I have already received an outpouring of love and support from friends and colleagues, including at the American Enterprise Institute and The Dispatch.

This essay is really an appeal for sympathy and love to others. No one is perfect—I fail at this all the time. But you never know if that person making you mad just lost their mother. 

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