When I began writing publicly about living with brain cancer, another healthcare-related topic was growing in awareness: Physician burnout.

Physician burnout was/is not a new phenomenon. The cult medical classic The House of God (1978) is a lot of things, but chiefly, it is a treatise on physician burnout and the grueling existence of a medical resident, transitioning from medical school into attending physician.

The book is also a romp through the worst misogynistic and patriarchal qualities of 1970s medical residency.

It is a book that is beloved while it is deeply problematic in its use of language and revelation of hospital medicine. No, this is not a 60 Minutes expose, this is a raw reflection on medical training and residency at one of the country’s best hospitals, told through the experience of a physician who lived it. And who lived it in the 1970s.

House of God is funny and heartbreaking and bracing and informative and deeply sad, while readers laugh through the tears.

In other words, it is deeply human.

I feel similarly about The House of God as I do about Charles Bukowski’s work.

I love Bukowski.

I’ve consumed Bukowski.

I’ve stuffed Bukowski in backpacks and messenger bags and dog-eared the pages and spilled wine and coffee and whiskey on Bukowski. I’ve recited Bukowksi. I’ve quoted Bukowski. I’ve considered betting on horse racing becuase of Bukowski—never have, though.

But Bukowski is a flawed man. He is a man who acts immorally from a moral center. I suppose should I have to choose, I’d choose that over a man who acts immorally without a moral center. There are plenty of those around. But not everyone is a Bukowski.

Distinguishing the person from the art is a familiar dance. When I write, the first person voice may diverge from the biological author. You are reading me and my experiences, but there is a me who is behind the keyboard who doesn’t show up on the page. Which one of us is to be judged?

***

A favorite childhood book was Pickles the Firecat, apparently titled only, The Fire Cat.

Pickles is a stray cat who gets into some mischief but ultimately becomes a helper with the local fire department. The climax of the children’s book, or at least the part that stays with me all these decades later is this matter of fact entry that I’m surely paraphrasing and misquoting:

Pickles wasn’t a good cat, and Pickles wasn’t a bad cat.

Pickles was a good and bad cat.

Pickles was a mixed up cat.

I’m a mixed up cat. I figure most of us are. Or not. Maybe I only wish to absolve myself of my sins by generalizing to equally distribute the weight of wrongdoing across the surface area of general assumption.

The assumption being that we’re all sort of mixed up cats.

The House of God is an immoral book with a moral center.

A mixed up cat.

Like me.

Like Bukowski.

It’s what makes all these works human, from the childhood cat, to the cynical doctors, to the drunken Bukowski.

***

When I started writing about brain cancer, the physicians were writing about another insidious and devastating condition: Moral Injury. I have been living without a curative therapy available to me to receive healing, and doctors are living without means to overcome the administrative and profit-driven motives that stand in the way of delivering healing.

Both patient and physician are locked in the same status with respect to insurance, administration, and private equity.

Profit.

Power.

Political sway.

The need for healing entails the need for healers, and shared burdens stand in both our ways.

***

Both of my M-name friends were getting ready to head out when I showed up for my uncharacteristically late-in-the-day scheduled MRI yesterday afternoon. Even the registration person was like, “What are you doing here so late?”

We’re going every four weeks on the MRIs again after the last scan showed possible tumor growth. The month gets busy when you get chemo, scans, and labs all requiring some attention every four weeks. Add a job and family.

It was awesome to see my crew on their way out. I was walking down the hallway to radiology, and they were zipping hoodies and tugging down stocking caps. M moved for a stop-and-chat, and M* fist bumped on the way by.

When you’re a friend, you’re psyched to see your crew clock out.

(I wasn’t going back to work after this either, know what I mean?)

But the perspective when you’re a patient changes. You know that seeing your crew clock out means you’re about to have your scan done by some randoms.

The guy who placed the IV was cool enough. We exchanged the appropriate small talk and connection so far as it goes for two dudes with beards and one in a backless gown.

Dad joke ping pong.

What are you getting your MRI for today?

Um. [stuttering; caught off guard] For, brain cancer. [I gesture vaguely to my head]

I figured, but I just like to ask.

[Collecting myself] I mean, an IDH mutated grade four astocytoma. Diagnosed glioblastoma in 2016… [I shift back in my chair; uneasy. It’s always important to me that I express enough medical knowledge with enough confidence and sarcasm to convince the clinician that we’re on the same team. I’m not just another patient. I’m Adam, this is my 47th MRI, I know things. Respect me.]

Last scan wasn’t great, so we’re checking on possible growth today.

The conversation trailed off from there. “Let’s get this IV in” or something. He walked me to the scanner. Last I saw of him was through the booth window in the porthole from the submarine. (This imagery applies to head MRI patients only.)

Boom boom boom. Bing Bing. Rumble rumble. Beeepbeepbeepbeepbeep.

Scan concludes.

Two students pulled me out from the scanner.

Who are these two?!

“Hey guys,” I murmured.

I’ve had all my medicine done to me, including brain surgery, not to mention, Whit’s delivered all three of our kids, at teaching hospitals.

When you’ve had some kids, and you’ve got some aging parents and grandparents, and you’ve got some brain cancer, you’re just used to being around medicine.

And for us, being around medicine means we’re used to having students around.

Being around students is the chance to show up in a big way for future patients you’ll never know about.

Think of it this way: Whatever experience you had with a nurse, doctor, tech, aid, clinician. Whatever experience you’ve had, maybe it was good, maybe bad, maybe you felt seen and respected, or maybe you felt other’ed and distanced. Here are those in training to one day create an experience for someone else. What can you do in this moment to help create that experience, or prevent it from happening, for a future patient?

I am the very nicest to students. I respect my care team no matter what, it’s what I’ve found makes sense as a cancer patient that kindness, patience, and respect goes a long way in a healthcare setting, but above all, I am nice to students. I get one encounter to influence somebody’s medical practice. Make it count.

***

It was scan number 47 yesterday. Like an idiot, I joked that I should get my 50th free. That’s the anxiety talking.

It’s actually terrible.

Brain cancer, I mean. And all these scans.

I hate this. I’m tired of it. I’m tired of the IVs. I’m tired of the emergency squeeze ball. I’m tired that I have some hair on my back and maybe I don’t want you to see it when I get up from the MRI table. I hate the wait for results. I’m tired of trying to pass around scan images to a team of incredibly talented physicians who give enough of a shit about me that they’re willing to randomly read a scan every so often, but I can’t get the goddamn hospital systems to talk to each other with right technology to even push a scan to the cloud that is easily readable and downloadable across institutions.

I can load vbucks on my kids’ Fortnite account from my laptop and it shows up within seconds on their Nintendo Switch, but I can’t get lifesaving second opinions on my medical imaging without fed-exing a CD through the mail.

***

There is anger in illness, too. And I never much talk about the anger here.

I am angry, friends. This disease has swallowed eight years of my life.

It will, ultimately, end my life, robbing my wife of her husband who has shared some bad shit in our lives individually that bound us together collectively. She’ll be robbed of the person who she shares the most inside jokes.

Imagine losing the person with whom you share the most inside jokes. I hate that for her. It really will suck. Conservatively, 95% of our discourse are one-liner inside jokes that evoke an entire package of emotion that we communicate layered and complex feelings in a few words.

My kids will lose their mistake-prone father who screws up parenting but also gives them twenty minutes worth of context for any question they ask. Their mom loves them in ways I can’t replicate, but so do I, in a way that a future guide will fulfill but won’t recapitulate.

There is a tension when I express these emotions. The tension is this. To state the frustration of eight years of living this exhausting life is also to be mindful that many families would give anything to have eight more years with their loved one, exhausting or not. The frustration of my long-term survivorship confronts the guilt of long-term survival. Many patients don’t live long enough to develop contempt for their survival.

I have some contempt for survival. That’s a mindfuck.

Maybe it’s all immoral in the end. Life, I mean. Mixed up cats doing their best in circumstances we can’t control. When we develop a moral center, we tolerate the moral injury of life, and we do our best to operate from that center. But it takes intention and effort. And systems seem to do everything they can to get in the way of humanity; to chip away at the moral center we seek to develop. Two steps forward and one step back because BlackRock bought your hospital.

***

I try to be nice to the med students and techs and aids in their clinical rotations. They’re also in circumstances largely out of their control, and they face future obstacles to healing. The best we can do is offer a little encouragement.

That probably goes for all of us, in all our interactions with others, in healthcare and out.

Stop and chat. Give a fist bump. Be nice to others. We all have a chance to influence the next interaction.

We’re all a little mixed up.

This blog post was published by Glioblastology on January 4, 2025. It is republished with permission.