Cancer Journal: Nightmares

The Nightmare. J. Heinrich Füssli, 1781.

I’m up again early in the morning, waking from another nightmare. Sometimes these dreams feature an assailant who rushes at me out of the dark. It’s as if I have been flung out of sleep. In others, I’m not threatened so much as trapped. For example, I recently dreamt that I had to give a lecture, but I was stuck in traffic and couldn’t get to the venue. Or anywhere else.

It’s wild that I would have problems sleeping now. I slept better when the tumour was growing like a pandemic case count. I dwindled as it grew: A tumour eats you from within. During the first stage of my cancer, it inefficiently consumed 20 kgs of me to attain the size of a ping pong ball. I slept well because I ended each day exhausted. Radiation, my first treatment, had the same effect. Now, with immunotherapy, the tumour is in retreat, and I am withered but recovering strength. But some nights I can’t sleep.

The nightmares could be nothing more than an immunotherapy side effect. Everything is tied to everything else in the body. A whole subdiscipline — psychoneuroimmunology — is devoted to how the immune system and the mind affect each other. There is, for example, a theory that stress leads to depression through inflammation and the immune system. Perhaps, then, pembrolizumab, the drug keeping me alive, causes these dreams.

However, maybe I am thinking through my future in my dreams. This is a task that my waking mind avoids. That’s not quite right: I understand that it is unlikely that I have been cured. It’s more likely that immunotherapy has knocked down my cancer, but hasn’t defeated it. In a few years, possibly just months, surviving tumour cells will evolve a strategy to circumvent the treatment, and then I’ll have another recurrence. Perhaps there will be a new medication I can take, or maybe the next recurrence will be the last one. I’ve lost several close friends to cancer; this is what happens.

However, it’s one thing to say that time is short and another to believe it. I don’t live as if I will be sick again: I spin out new projects as if I will see them through to completion. Tomorrow will be like today, or maybe a little better.

Except my dreams suggest that below my relentless self-improvement, I’m frightened. My dreams are wiser than I am. Cancer returns by smashing in the door. Suleika Jaouad wrote about she discovered that her leukemia had recurred:

When I returned home, the cough lingered. I couldn’t shake it for weeks. When I went in for routine blood work, my counts were low, and I was worried. My medical team said that if it would ease my mind, I could get a bone marrow biopsy, though the chances of my leukemia returning so many years later were extremely unlikely. I felt anxious and longed for an answer, so I pushed ahead and made the appointment [for a biopsy].

Jaouad’s experience — and mine — is that doctors discount signs that things are turning for the worse. My surgeon kept telling me that the CT scans showing recurrent tumour activity were false positives. Until a biopsy proved that they weren’t. The same happened to Jaouad.

[W]hen I got the biopsy results, it felt like a sinkhole opened up and swallowed everything. Within 72 hours, Jon and I packed our things, found friends to care for Oscar and Loulou, gave copies of our keys to our neighbor, cancelled work and cleared our schedules, and were on our way to the hospital in New York City. We haven’t been home since.

Likewise, just days after my biopsy confirmed the recurrence of my cancer, we were on the road, living in motels and a borrowed house. Not because the disease had bankrupted us — this is Canada, not the US — but because my Ottawa doctors told me they were out of care options, and I wasn’t ready to die.

We found an option, Deo gratias. My dreams tell me, however, that we’re not done. It’s a close-quarters battle, and the next time cancer breaks the perimeter, I want to be ready. I want a plan, and to that end, I have questions. Specifically,

  • How quickly will things fall apart if and when pembrolizumab fails?
  • What treatment choices will I have, if any?
  • And if there isn’t another great treatment option, when and how do we start palliative or hospice care?

I need to plan which loved ones I need to see, what tasks I can finish, where I can get care, and how to marshal the funds to make all that possible.

Preparing patients to deal with treatment failure is not part of routine cancer care. I understand why. Oncologists have suffering patients who need care right now, and that’s a better use of time than talking with a patient in remission about what might happen in the future. Nevertheless, the only way to die well is to do it right the first time; you can’t learn from your mistakes.

Thor battling the monster in Midgard. J. Heinrich Füssli, 1790.

I’ve scorned the “fighting” metaphor because I can’t do anything to defeat cancer. Perhaps my immune system can be boosted by immunotherapy, but I’m just a witness if so. What I need to do is give up on “winning.” Recognizing that I will lose doesn’t mean I am giving up. I am arming myself to fight the long defeat.

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