Mourning the Loss of Paul Kalanithi

Paul Kalanithi, Molly Golbon, Andrea Gudmundsson, Lisa Goldman, Chris Draft. Stanford Stadium, October 2014.

Paul Kalanithi, Molly Golbon, Andrea Gudmundsson, Lisa Goldman, Chris Draft. Stanford Stadium, October 2014.

When I was first diagnosed, it was quite a fire drill. My biopsy was supposed to be an easy outpatient procedure, an hour, maybe two, tops. Instead, I didn’t set foot outside of the hospital for a week. I woke up the next morning to meet my new oncologist — I have no idea to this day how that even happened. Did someone call or do oncologists have some sort of homing system, showing up bedside when someone needs them, like a very un-fun toothfairy?

I remember a sort of a pow-wow. My room was filled with people: Eric, my parents, a family friend MD who was helping translate everything, my new oncologist, various nurses. I wasn’t given a lot of options. Basically, it was (a) get chemo immediately and pray it helps, or (b) die. So. Option a, I guess?

In shock, I shifted to auto-pilot. The athlete, the competitor in me trained to rise to a challenge, stepped forward. My reaction was very stoic, very practical, extremely focused. No time for research? No real choices here? Ok, then. Game on. Let’s do this. Curiously, I did not ask–and still have never asked–“How long have I got, doc?”

Two weeks after I was diagnosed, Paul Kalanithi published his article “How Long Have I Got Left?” in the New York Times. People started forwarding me the article in droves. They thought I’d find it helpful, uplifting even. But, I wasn’t in the right frame of mind. It scared me, this doctor/patient with my same diagnosis, speaking so bluntly about death. “Why the f*&k are people sending this to me?” I wondered. I’m not like him. I’m not going to die of this.

Eventually, some of the shock wore off and reality seeped in. I’m still not convinced I’m going to die of this (the other day someone cut me off on the freeway and I thought, “well, that’d be a plot twist”). But, now I appreciate Paul’s article – deeply. In truth, he captures the real crux of the issue, the absolute heart of what’s so difficult about living with a diagnosis of metastatic cancer (once the shock abates). Sure, all the physical maladies are hard, but it’s the mental piece that wears me down, brings me to my knees. I see fellow patients with my diagnosis beating the odds, living for years, but I also see people with my diagnosis perish with a speed that’s breathtaking (yes, literally). Paul was at the Super Bowl scarcely a month ago, and now he’s gone. How am I supposed to reconcile myself with that truth?

I could have years. I could have days. It’s impossible to sort priorities when I have no idea how much runway I have left. I’ve had lengthy conversations about this, both with others, and then, just endlessly in my head. I don’t ask my doctor, but day in, day out, I must make decisions how to spend my time based on how much I think I might have left. It’s a constant, almost minute to minute, calculation. Can I watch a little TV or should I write future birthday letters to my children? Should I chase every bucket-list item or try to recapture the mundane, normal life tasks, like volunteering in my kids’ schools, that have become so elusive? Preserve my energy, trying to heal, or expend it, squeezing the most out of what I have left? It is the drumbeat, the unrelenting subtext of anyone facing a diagnosis like this.

As many times a day as I contemplate these questions, I can never seem to find a comfortable resolution. I find myself living in a no-man’s land. A no-man’s land that Paul captured so well in another essay where he describes time as “static.” I instantly knew what he was describing in a way only others in this situation can. Paul wrote about the difficulty of verb conjugation, “What tense [am] I living in?” he asked, and I’ve asked myself the same. Facebook announces that I am presently a fitness instructor, there’s no option for “was and would like to be again.” I can’t bring myself to delete it entirely.

The world marches on, but I’m on a different track. Outside of medical appointments, I have very few obligations. You’d think this would leave me enough time to write a book, organize years of photos, maybe broker world peace, but many days cancer robs me of the energy to do so. Today I struggled to summon the energy to even watch TV. I laid in bed resting, staring at the wall as the clock slowed to a crawl. Static, indeed.

Paul’s passing has rocked me to my core. I admired his writing and I found it so helpful to my own journey, I hungered for more. I invited him and his family over for dinner a couple months ago because I knew he and his wonderful wife Lucy had insights and wisdom to share. I was disappointed when the dinner fell through and had hoped to reschedule. In the end, I never did get to know Paul personally, but he still made a difference to me. I’m so sad the world has lost his light. I’ll do my best to pick up the torch with the other survivors and carry on in his honor.