Stories of Lung Cancer

We tell ourselves stories in order to live.     ~Joan Didion

Trauma & Lung Cancer | Aug 10 2024

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The summer has not been going according to plan.

Things started well. Clear scans (YAY!). Bicycling trip along the Danube River (Austria, Hungary, Czech Republic): amazing. Then things went south. A positive Covid test the day after we arrive home meant a low fever for a bunch of days, a coldy feeling, and keep-you-up-at-night muscle aches. No coughing or other lung related symptoms. (Yay!)

Until a small celebratory bike ride about ten days after. Then we’re talking ridiculous SOB (Shortness of Breath), coughing, lying awake at night listening to my breathing gurgle. Oh, hello, it’s my old friend asthma. Manifesting in completely new ways, it laughs at my rescue inhaler. Laughs. I haul out the big guns, AKA the nebulizer, every 4-6 hours. Increase inhaled steroids. Slowly, things improve. Bicycling? Out of the question.  

Then, a dear friend, a 16+ year survivor of lung cancer, dies. 

It’s too much. I spend July in a private tailspin. It’s grief but it’s also more than grief; I can’t wrap my mind around what’s happening. I ask CancerShrink what the hell is going on. He says, “Trauma response.” 

Information, for me, can be a helpful counterweight to emotional mayhem. I set out to learn.

Trauma and Lung Cancer

Trauma is usually not directly discussed in lung cancer circles– in any circles, if we’re being honest. And it needs to be discussed openly so that cancer survivors (and other people) can be free to live the lives they want, not just the lives they are able to cope with. So, let’s start with definitions. 

Psychology Today writes, “The word ‘trauma’ literally means wound, shock, or injury.” 

The Cleveland Clinic’s explanation goes deeper:

 “Trauma or a traumatic event is anything that severely threatens your existence or sense of safety.” 

They continue, “It doesn’t have to be a single event (like a car accident) — it can be long-term trauma like living through war or frequent abuse. Trauma also doesn’t have to happen directly to you — you could witness a traumatic event.” 

Examples of traumatic events include (but aren’t limited to): Serious accidents; severe injury or sudden illness; war and military combat; natural disasters, such as a tornado, earthquake, fire or flood; physical abuse; verbal abuse; sexual assault or abuse; bullying; the sudden death of a loved one. 

Trauma specialist Dr. Bessel van der Kolk is a renowned researcher, clinician and author of The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. van der Kolk describes trauma as “not just an event that took place sometime in the past; it is also the imprint left by that experience on mind, brain, and body.”

Imprint? 

Once, Dr. Radiology suggested what I’d been through– diagnosis, treatment, life-threatening pneumonitis, 7 or 8 months of high-dose steroids, a pulmonary embolism–had been traumatic. I was stunned. Trauma had never crossed my mind. I mean, I hadn’t been through war, I just had cancer. (Cue eye roll here.)

And yet. While pneumonitis and pulmonary embolism threatened my life differently, each stole my identity in exactly the same way. I knew, know, myself and my world because of my movement through it. When I couldn’t breathe, couldn’t move the way I always had, the self I knew shriveled up and blew away. And then it was as if there was nothing, a cacophony of anxiety, fear, and blackness shot through with danger.

I think of that as trauma. A kind of annihilation, which can be psychological, emotional, spiritual, or all of the above, all at once. Once experienced, it can be triggered again. That’s the imprint. It’s the emotional spiral June and July became. 

Trauma and the Brain

This is the section where I struggle to explain brain science, because it’s the brain that takes the brunt of trauma and spreads it across the body.

In his book, van der Kolk makes our neurology sound like a network of highways. One route goes through the primitive brain. All the information from the senses— sight, sound, movement, etc.— about the environment and the body rushes in. The thalamus processes the information and routes it to the amygdala, which determines the emotional significance. Is it a threat? It calls the hypothalamus: flood the body with the hormones cortisol and adrenaline to fuel the body’s fight or flight response. 

The thalamus sends the same information on a second route: through the middle brain, the center where the hippocampus regulates motivation, emotion, learning and memory, and on to the prefrontal cortex. There, it’s time for high-level assessment of the danger. But this happens a few milliseconds after the primitive brain has already burst into action. The intensity of that response can overpower the thinking brain, especially if that higher brain has been weakened.

MRI research shows the prefrontal cortex does seem weaker in the face of trauma– or even perceived trauma. Because as the amygdala becomes increasingly hypersensitive, everything looks like a threat. The amygdala wants the fight or flight floodgates wide open, all the time, which takes a long term toll on the body’s immune system. The powerful flow of emotion splinters memories, making it harder to recall a whole picture or what’s been learned in the past. That’s due to a decrease in size of the hippocampus. And, the prefrontal cortex looks smaller and is less quick to react. No wonder trauma responses are so deeply and fearfully emotional. Our perceptions have changed because our brains are different.

While each person experiences trauma differently, there are distinct expressions of it. Most common is a sense of dissociation, the experience of losing connection between thoughts, memories, feelings, surroundings, behavior and identity. There can be anxiety, avoidance of similar situations, confusion, exhaustion, fear, feeling or acting “numb”. 

What can trigger a trauma response can be very small: a sound, a smell, a location. Many lung cancer patients who have regular scans note that they feel increasingly anxious as scans approach. In our circles, this experience is encapsulated in one word: scanxiety. People report irritability, sleeplessness, a sense of looming doom, panic. You guessed it— a trauma response. 

It’s why, after Covid and asthma, my friend died and I went numb.

Diagram of how trauma affects the brain

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Coming Back to Center

In the months before he died, my friend and I spoke often about our local group. “We never talk directly about death,” I observed. He said people often faded from the group just when they needed the most support; when death happened at a distance, we could tal

k about the person without touching the big D. In our group, with him growing weaker every month, the more pressing question became, what you say to someone who’s dying?   

Not long after he died, I hoped we’d feel our way toward the topic before the meeting closed. Was I surprised. Barely 10 minutes into the meeting, BAM: death was on the table. “It’s with me every day,” one woman said. There were nods across the screen (we meet online). One man wondered how you know it’s time to stop striving to stay alive. 

We touched on Oregon’s Death with Dignity legislation (and I since I’m being treated in a cancer center in a Catholic institution, I’d better be clear with my doctor that this option must be on the table.) The conversation turned from death to how each of us copes. 

It makes sense. In a group of people who have Stage 3 or 4 lung cancer, how much is there to say about death, really? Much more interesting– and relevant– to talk about how to live, to the fullest.

Moving forward, my gift to my friend, and myself, will be to help facilitate the group. Gathering with others helps mitigate some of the unconscious fear, which makes it easier to think more clearly about what matters. 

van der Kolk writes, “Our research showed that calming the fear center decreases trauma-based problems and improves executive functioning.” How do you do this? (Prepare yourself.) Mindfulness practice has been shown to physically alter the amygdala. 

Writing can also help create a lifeline to the present moment. Putting emotion into language helps strengthen the brain’s thinking center. Gradually, it becomes clearer that the amygdala’s demand for fight or flight is neither sufficient nor inevitable. Our group agreed that part of what you do is learn to live with it while you do your damnedest to live well. You keep your focus on thriving. 

I got the first sense of fall the other day. The light is becoming richer, more butterscotch than the shiny white of spring. I’ll spend today baking some things to bring to tomorrow’s celebration of my friend’s big, beautiful life. I am coming back to center, learning to carry and reconcile the complexities of trauma as I continue to stretch my life. 

It’s been a long post– thanks for reading. I hope you are having a wonderful day. 

Oh! I forgot! Somewhere in all of this, I had brain scans. And they were A-OK. What a lovely relief.  

Partial Bibliography

 

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Thank you so much for this post and for sharing what you’ve learned about the trauma we experience living with LC. Your blog has been a touchstone for me since being diagnosed with EGFR LC a little over a year ago. My condolences for the loss of your friend, who also meant so much to the LC community.

Wow! A lot to process. Many of us (like me!) get through whatever we need to and then break down. I’m thinking about things like 9/11 and my own brush with cancer.
Thanks for helping us name this as trauma.
Glad that your scans were “A-OK.” We prayed for you at FPCY today.
Peace,
Connie

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