Finding Parallels Between the Crisis Phase in Fighting Cancer and COVID-19
After my mom died, I remember how every morning in the days that followed, I would wake up and for a few moments, I would be free. For just an instant, I would forget she was gone.
And then with a jolt, it would explode to the surface, “Oh my god, she’s gone.” And a day of fresh grief would start anew.
Same with a cancer diagnosis. I would finally find sleep, but would wake up during the night to use the bathroom, and on that five-foot walk there I would suddenly remember, “Oh my god, have cancer, I have cancer!” And the grief, the agony and the spin would start anew.
Also during cancer treatment, I would regularly have bad dreams. A nightly one was where I was running in a marathon. Running and running and running, I would arrive at each mile marker, yet no one would tell me which mile it was, or how much farther I had to go. In the dream, I had no idea how many miles I had come, yet I knew I was exhausted.
This week, about three weeks into our COVID-19 stay at home order, I posted on social media. I explained that while I had been doing OK so far, this week I had hit a wall. I was surprised how many replied, “me too, me too.” Everyone it seemed was saying that they had done OK with it – until now.
It was a wall hittin’ weekend for a lot of folks.
I can think of a lot of reasons why this happened.
First, like in my running dream, it is very hard to do something when you don’t know how long it will last. Uncertainty is draining.
I am a girl who likes to pace myself with difficult tasks. No matter what is ahead of me, I want to know how long. A dental impression, a long flight, I always ask how many minutes, how many days will it be? With each element of an MRI, I ask the people in the booth to count me down, to tell me the lengths of each new segment and how many minutes are left in each one.
Mentally it makes it more doable for me. I can eat an elephant a bite at a time if I know how much is left.
But it seems with COVID-19, a new viral strain that can lead to serious or fatal health complications, we are finding that number, the “how long,” is always changing, ever fluid. We think we know what mile marker we are running toward, say 14 days, but the goalposts keep getting moved. And with numbers being floated that it could be 18 months, it’s exhausting to imagine.
I remember a day when I thought the first part of my chemo treatment was finished. It was a particularly nasty chemo drug that made me very, very sick. I got up that day and happily went to chemo, mentally feeling ready to swallow the last bite. I remember my chemo nurse Marcy gently breaking it to me, saying, “No Lauren, you have six more weeks of it.”And I absolutely lost it. I thought I had scaled the first wall, only to be told, no Lauren, there is still another 100 feet to climb.
I hit the wall hard that day. I bounced off it and laid on the ground for a long time.
And I wept.
So many of us have hit that wall these last days. We made it through the first difficult weeks, only to find there is more ahead. We had paced ourselves and mentally prepared thinking, “Oh I can do this for a month, I can stay inside and I can homeschool, and I can stretch my finances for that long.”
And then we were told nope another month. At least. Another month. Maybe more.
And we hit the wall hard.
And we wept.
Uncertainty is exhausting. Not knowing “how much longer” is one thing, but uncertainty about the outcome is another. Uncertainty about our health and our family’s health. Uncertainty about ever finding normal again? It takes a lot out of you.
I was horrified when I was told my chemo protocol was 18 months. It seemed impossible and undoable. It was overwhelming to imagine what those 18 months would be filled with — no hair, social isolation, icky treatment and the loss of all the things I would miss out on as a mom of young kids.
The uncertainty about outcome ping-ponged in my head on the daily. “Will I live? When will I feel safe from this again? Will my family make it through?” I had no idea, no assurance that if I did A & B, I would get rid of the big C. Each hour was constant mental darting between “I’m gonna die from this,” and back to, “it will be OK, your odds are good if you do what you are told.”
We have hit the wall of wondering about the uncertainty of these things with COVID-19. We are exhausted and the goalposts have been moved. We are longing for normal.
The crisis phase of grief is busy and loud. We are just now rounding out of that phase with COVID-19.
While the shock of finding out I had cancer was exhausting as it stole sleep and headspace, the “doing” of early cancer diagnosis was even more taxing. The prepping and navigating all the things that had to be done under a downpour cloud of, “Oh my god I can’t believe this is happening” — things like finding an oncologist, preparing my kids for what was ahead, getting a port put in and sorting finances.
Each day it seemed was a new crisis to manage, a new adjustment in my life, a new thing to grieve, a new fear, a new facet of what would fill the 18 months ahead. It was a time filled with waking up each day feeling “normal” and then, remembering it was happening. Each day was overwhelming grief about losing my normal.
The busyness of that initial phase made what was ahead seem even more impossible to imagine. Living 18 months while sustaining this exhausting level of anxiety, chatter and adjustment seemed impossible.
With COVID-19, we have all been in crisis mode. Zapping our energy with the hunting and gathering of our supplies at a frantic pace, making arrangements to get kids home from college, learning ZOOM and canceling big social events, while grieving their loss.
We have been busy busy busy learning about COVID-19, learning to sanitize and wash our hands, packages and groceries.
We have been adjusting to the loss of social contact and are using up tons of mental energy for hypervigilance about distancing. We are unable to restore energy as many are having the bad dreams, waking up only to remember, “Oh my god COVID-19 is happening.”
The crisis phase is filled with lots of chatter, a lot of noise, a lot of talk about nothing but COVID-19. I remember in my crisis phase of cancer there came a day when I told my dad on the phone that I was calling a moratorium on cancer talk.
I realized that every square inch of my brain, 24/7, was being taken up with cancer talk, cancer information and cancer thoughts.
Cancer Cancer Cancer.
I had cancer fatigue.
COVID COVID COVID.
I now have COVID-19 fatigue.
We all do. COVID-19 fatigue comes from anger about why aren’t people distancing or taking it seriously.
It comes because sustained fear is exhausting.
Worry is exhausting.
Anxiety is energy-sapping.
Hypervigilance is draining.
It comes from the constant chatter. The noise in our head, the noise outside our head.
It comes from the constant mental pinballing back and forth between this is deadly serious vs. I am overreacting.
COVID-19 fatigue arrives with the abatement of the initial surge of adrenaline needed to get through the crisis phase.
It comes from climbing a wall with raw scrubbed hands while in isolation, only to wonder, will there be an ICU bed and vent for me?
It comes from our dissection of and the freak out at every cough or sneeze. Every hot flash, every body ache is suddenly a big thing to think about.
COVID-19 fatigue comes because of uncertainty about how many walls are ahead of us, or how much longer this will last.
It comes from using up all the immense energy in having to learn a completely new way to live. The busyness and all the prepping for this new thing.
And COVID-19 fatigue comes from grief, and the longing for normal again. It’s exhausting and terrifying to have people say “This is the new normal; get used to it.” It’s like getting a plate of poo and being told you will like it. Yeah, not so much right now.
COVID, COVID, COVID.
I remember too, the defeat I felt on the day when I finally scaled that first cancer wall and triumphantly looked out ahead. I was thinking I would see the promised land of Normal, but all I saw were more and more walls ahead, some of them even bigger than the one I had just climbed.
It made me hit that first wall with my fists and weep, “I can’t do this! It’s not fair!” But I did it. Because the alternative wasn’t so spiffy.
And COVID-19 fatigue or not, you can do it too.
I promise you, you can do this. Here is how.
During cancer, a friend sent me a note early on that said, “You won this battle, now win the war.”And that was how I learned to pace myself through the ordeal. Not by oh my god 18 MONTHS! But instead by simply navigating each “battle of the day.” A bite a time.
I climbed only the wall in front of me and trained my brain to avoid thinking about those ahead, allowing myself to see only as far as the headlights could shine that day.
I refused to focus on the uncertainty of “how much longer” and “what will happen?” anymore, because no one had the answer. I knew 18 months was a likely endgame and that was it.
I cut myself some slack and allowed for rest. I allowed that I was mentally exhausted from those early weeks of the crisis phase. With COVID-19 fatigue, you have bounced off that wall. It’s OK to lay there for a bit. It’s a lot to navigate, so it’s OK you haven’t cleaned closets, or written a novel.
Balance will come, I promise.
It’s OK to feel you can’t follow the advice of well-meaning friends. I had so many people tell me how to “do cancer.” Eventually, I discovered there are no Cancer Police. Similarly, there are no COVID-19 Police. You have to find a way to navigate COVID-19 that works for you. You do you. Find a way to fill your cup and cope, within the confines of COVID.
In hindsight, I learned this important truth: the first wall is the hardest.
Each wall thereafter isn’t easier because they are smaller or lesser, but because you build both the mental and physical muscles to climb them. You gain dexterity, as climbing becomes more the norm, so it’s not as taxing and fatiguing. In crisis, I didn’t have my “cancer legs” yet, and it made me imagine that all walls ahead would be as hard and tiring to climb as the first one. But they weren’t.
We are just getting our COVID-19 legs. The rest of this ordeal will be less exhausting, more doable, and will be, I promise, more normal feeling.
I learned not to add unnecessary weight to the climb. A head full of junk and noise and fear and worry was heavy enough, without me adding other stuff (I’m talking to you CNN and Twitter) to the climb. Sometimes information/news is not the rocket fuel we think it is, but sludge that exhausts and weighs us down.
And finally, here is the golden rule I learned about getting through the hard stuff. Never look at swimmers in the other lane. Let me say that again, never look at swimmers in the other lane.
I learned there are a thousand different types of breast cancer tumors, and it did me no good to look at the other swimmers to inform me of my outcome or progress. Looking at the other swimmers only served to fill my head with heavy junk that made me sink.
With COVID-19, resist the urge to read up on who has died. And for the love of God, stop comparing their pre-existing conditions, age or weight to yours. Just swim in your COVID lane. Do you. Take care of yourself and your family the best you can.
Lastly, embrace that worst-case scenario on the duration of this. I know that sucks right? But hear me out.
I can confirm that once I wrapped my head around and swallowed the bite of “OK, it’s 18 months of chemo, I can do that,” it got a lot better. It was then I knew how big the elephant was. New energy arrives when you put down the sword and anger about it and just decide to live in that space. Remember, struggling against something will drown you.
This week, after listening to experts I simply decided in my non-medical brain, 18 months is a good estimate for a definitive endgame for COVID-19 and quarantine.
In 18 months, we will likely have a vaccine. And yes, we may even have a cure/treatment earlier, and that would be dandy. I can do 18 months, just as I did before, considering the alternative.
We can do it by reminding ourselves that each day is one day closer to some super smart person coming up with a treatment or a vaccine. We can do it by remembering if we do what we are told and stay home and wash our hands — if we do A & B, we will rid ourselves of C.
Each day will be easier as you build your COVID legs, and will seem more normal. It’s doable if it keeps you healthy.
While it’s too early, and we are too tired and cranky to “feel the good” that will come of this, know it will come. Lean into the early snippets of it that you come across each day.
Remember this, you are never as far from “normal again” as you are in the crisis phase. From here on in, you get closer to normal each day, each minute, each second.
You have won this battle, now you can win the war.
I promise you, you will once again have a day where COVID-19 doesn’t greet you each morning or shake you awake from dreamy innocence. A brain free from COVID-19 thoughts will greet you for a few moments each morning, and then will linger a few moments longer, and eventually it will start to stay around all day. COVID-19, like cancer for me, will become something that happened long ago.
And you will have lived your way into normal.
But the funny thing about the normal we long for? It’s sometimes not the same, it’s even better. But that’s another story for another day.
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Getty image by Popmarleo