Chapter 88: No such thing as “back to normal”

Incredible image with my backyard Tibetan Prayer Flags taken by Shari Fleming Photography.

A few days ago, a colleague and friend asked me a very direct question, “Do you ever have a day when you don’t think about cancer?”

“Never,” I replied instantaneously, no thought required. “It’s exhausting, honestly. I think about cancer multiple times every day, no matter how good I’m feeling or how stable my recent scans are.”

I appreciated this question tremendously. As many people living with cancer or chronic disease might tell you, there comes a time when others stop checking in, stop asking. Sometimes, I think this happens when we start to look normal- when our hair has grown back, when we are working our full-time jobs, when we no longer take days off for chemotherapy, when we get through the day without obvious difficulty.

This bothers me. There is no normal when you’re living with cancer or chronic illness. There will never be normal again. There is no day when I wake up and forget I have cancer. There is no blissful ignorance that I am perfectly healthy, and nothing can hurt me.

“Do you ever have a day when you don’t think about cancer?” Never. Never, ever. Not even one.

And let me tell you, this is exhausting.

During the COVID-19 pandemic, the entire world momentarily lived with the unknown that a person with cancer lives with every day. Yet now, “normal” is back and with “normal” has come the realization that I don’t have the same “normal” to return to.

Thankfully, my scans are relatively stable and I’m not currently poisoning myself with chemotherapy. But, two brain surgeries and brain radiation still have a lasting effect.

I get tired easily. I must sleep far more hours than I ever had to pre- diagnosis. I’m slightly more sensitive to loud noises, lights, and weather changes than I was before.

I know this about myself, and I adjust. But, as things return to back to “normal,” it has become harder for me to accept my new normal.

Cabin trip for the weekend? Sure, but only if you promise I will have a dark, comfortable room to get a full 8-hours of sleep in…

Want to watch fireworks tonight?  Sure, but I’ll need at least two hours afterwards to recover from the headache they will induce….

Another beer? Sounds great, but I’ve reached the limit my medications allow me…

Want to try wakeboarding? I would say yes, but do you happen to have a medical-grade helmet in your boat to prevent head injury in a post-craniotomy patient? No, oh I guess not then….

This weekend, I did go to a cabin full of wonderful people. I did watch fireworks and have a beer. I didn’t wakeboard, but I did spend a lovely day on a boat. I did a lot of “normal” things, but I also realized very clearly how my “normal” is not what it used to be.

So, what’s the good news in this post? Where is the Courtney positivity we like to read about?

It’s still there, but it’s hiding behind a thick layer of fatigue, headache, and frustration that as the world goes “back to normal,” it unfortunately doesn’t include me.

When I asked my significant other to leave our cabin weekend a day early, he graciously agreed.

On the drive home, in the middle of rural Minnesota, I finally stopped complaining about my “new normal” and looked at the view in front of me.

I saw green, leafy trees stretching for miles on either side of me. I saw white, fluffy clouds casting a purple-tinged hue on the expansive sky before sunset.

As I looked at the clouds above me and the trees alongside me, I started to think about impermanence, and how impermanence can include the ever changing “normal” we live in.

Impermanence, a topic I’ve written about many times, is a profound philosophical and spiritual idea. Impermanence is a key concept in Buddhist philosophy, but is also found in many other religions (including Hinduism) and philosophical teachings (including Greek philosophy in the writings of Heraclitus). I’ve also related the concept of impermanence to the science of thermodynamics. Energy is transformed, but never created or destroyed. Everything lasts for a limited period of time; it does not simply start or cease to exist, it changes.

On the drive home this weekend, I saw clouds. I remembered that clouds are made of water vapor, and when the get heavy enough, the water vapor transforms into water and falls as rain. When rain falls, it lands on trees. This water combines with carbon dioxide in the process of photosynthesis to create oxygen and glucose (a sugar plants need to grow and produce more oxygen).

My favorite part of this scientific thought experiment is to think about the impermanence of each factor in this process. Clouds are not permanently clouds.  Water is not permanently water. Clouds are made of water vapor, which turns into liquid water and forms rain. Rain does not permanently stay as water. Rain, through photosynthesis, changes into oxygen and glucose. Oxygen and glucose help us and most living beings create energy and survive.

I said all of this to my very patient significant other and as soon as I finished my diatribe about the impermanence of rain, it started to rain. I swear to you. It was sunny, yet it stated to rain.

 1) In that moment, I

1) Realized I definitely have magical powers, but more importantly

2) Remembered that impermanence is beautiful.

3) Thanked my partner for letting me spend a significant amount of time looking up and reading aloud scientific studies on the transformation of oxygen and hydrogen in the atmosphere rather than listening to road trip songs like a normal person would.

What is “back to normal?” And why do we want this? Everything changes. Everything transforms and grows and this is beautiful. Change is beautiful. Change quite literally creates the oxygen we breathe and the energy we need to live.

I don’t need to go back to normal. I have a new normal, and it will constantly change. My normal will be difference with every season, with every new relationship, with everything I learn and everything I un-learn. My normal will be whatever I decide it to be. Normal is fiction. Impermanence is reality.

My normal today is: 5% exhaustion, 5% thoughts about cancer, 10% longing for the past, 10% appreciation of today, 10% hopefulness for the future, 30% happiness, 30% contentment.

Tomorrow, I’m sure my normal will be different. So will yours. My normal is impermanent, my normal is changing. It’s not always easy to embrace the change. It’s usually really, really hard.

“Do you ever have a day when you don’t think about cancer?” Nope, but maybe someday I’ll have a new normal and I will.

Fondly, Courtney

©CB2021