November 11, 2021 | by Aspen Heidekrueger
Wrapped up in that one little word is the power to elicit every emotion from the deepest pain to the greatest joy and everything in between. It is a word that embodies a battle that must be fought and hopefully won.
But that battle—while different for every survivor—is more complicated than most people realize.
Ever since I was diagnosed with Leukemia, my life has been inexplicably altered. When I make references to my life now, it feels as if every event is placed firmly into one of three separate categories: Before cancer, during cancer, and after cancer. All three stages together make up my life, and each is individually significant, but I want to focus on the “after” portion today.
What words or phrases usually come to mind when people hear the term “cancer-free”? Most people are going to think along the lines of how:
- The survivor now has a clean bill of health!
- That person can now go forward and thrive with a new appreciation for life and wisdom gained as they fought cancer!
- It’s time to celebrate and be happy because the hardship has passed!
- The battle is finally over!
That’s what cancer-free means, right?
For me, when I was declared officially cancer-free the first time, it meant I still had a year-and-a-half of chemotherapy left to target any potentially dormant, undetectable leukemia cells that could be hiding in my tissues or bone marrow.
The second time I was declared officially cancer-free after nearly 3 years of intensive chemotherapy and high-dose steroids, I felt like the farthest thing from healthy, strong, or able to go forward and live my life.
My body had been damaged nearly beyond recognition by the treatment that saved it from cancer—a treatment that affected my body so negatively the doctors expected the chemo to kill me in the initial weeks of my treatment. Since I survived all the way to the end, I was a walking miracle. A miracle that was now left with severe damage to her kidneys, liver, heart, joints, respiratory system, nerves, thyroid, and just about every other major body system you could name. After my treatment ended, I was alive, but just barely. The health problems that chemo left me with—problems that most doctors didn’t understand— were the new threat to my life. The battle was still far from over.
Additionally, I was so traumatized from everything that had happened that I didn’t even really want to be alive.
Things like strength and an appreciation for life wouldn’t come until years later, after much time, energy, and strife were spent trying to heal my body and mind from what it had endured.
The story of how a cancer survivor beat the odds, finished their chemo, survived cancer, and went on to have debilitating physical and mental problems as a side effect of their treatment is not the most popular narrative.
For me, when my treatment ended, a whole new battle was beginning.
I once wrote another blog post, titled “How Surviving Cancer Can be Like a Journey Through Hell (AND BACK)”. In that piece, I liken battling cancer to travelling deep into the circles of a Dante-Inferno-style hell. In this analogy, in order to survive your disease, you must enter the first circle of hell to find your first dose of your medicine. Then, you must keep going deeper and deeper into hell to find the next life-saving dose.
Let’s imagine this:
You are seriously ill, but you don’t have a choice but to embark on this journey. If you survive the frequent attacks from demons, a landscape designed to kill you, and the occasional hellfire that rains down along your way, you might find your final life-saving dose at the very center of hell, within the final circle.
You take the final dose, and you are cured. You are cancer-free. The catch? You are still standing in the center of hell. You are also completely exhausted, injured from the trials you faced, and uncertain if you have the energy to make another journey and face any more demons, and… you don’t actually know the way out.
Of course, the battle against cancer can be a bit different for everyone. Maybe some people encounter bigger and stronger demons on their journey through Dante’s Inferno. Maybe hellfire rains down more frequently or some find shortcuts to take. Maybe some have a map to guide their way through the circles and others don’t. In the end, it’s all still a challenging journey through hell.
When I took my final dose of chemo, I felt like I couldn’t make the return journey. Fighting cancer had broken my body and beaten the rest of me into dust. I had been in hell so long, nothing else seemed to matter. I wanted to give up right where I was and let it all end. That was my reality.
I created this “going into hell” analogy to emphasize something that seems to get lost in translation somewhere between being declared “cancer free” and life afterwards: The battle rarely ends after the cancer is gone.
I’m not just referring to the ever-looming potential of a relapse and the “scanxiety” that comes during every appointment to renew your clean bill of health. I’m also referring to the long-term physical impacts of radiation, surgeries, and chemo that is so “hazardous” nurses can’t even let it come into direct contact with their skin. I’m referring to the mental and emotional impacts of long-lasting trauma and stress, and the grief that comes with the loss of health and your ability to participate fully in life for a long period of time.
There is also something psychologically damaging and claustrophobic about living in a body that is dying, sick, or generally just not functioning well, for months or years, especially as a young adult.
Thanks to all these factors, my “after cancer” period has involved debilitating chronic illness, anxiety, depression, PTSD, and generally struggling to ground myself after everything that happened to me during my chemo treatment.
I could write a whole book on all the reasons cancer survivors are justified in not being “okay” the moment their treatment ends, and in that novel, I would likely emphasize things like:
- When a bag of IV chemo falls on the floor and breaks open, a hazmat team is required to clean up the stuff—stuff that was supposed to be injected right into your vein. You can imagine that it has the ability to do long-term damage to your body.
- The best of us start to feel like we are losing our sanity after a week of having a cold. Just a simple cold. Imagine that cold being about 50 times worse, threatening your life, and extending for months or even years.
- (I’ll get off my soapbox now)
Suffice it to say: If you survive cancer, it can take a long time to recover. Sometimes, a full recovery is impossible—sometimes there are physical and mental complications that can’t be remedied.
It’s not easy to acknowledge that someone could go through something as awful as cancer, fight tooth and nail to be okay, and then continue to struggle. It’s an unpleasant reality, but it’s an important one to acknowledge.
Living through a life-threatening illness and trying to recoup in the aftermath is a feat that is not for the faint of heart. Whatever that recovery process looks like, be it struggling to get out of bed each day, finding the will to keep going, or rallying yourself and reentering society as a fully functional human being, able to acknowledge and embrace everything that happened to you, is something to be admired, acknowledged, and praised. Just surviving is often a feat within itself.
At six years cancer free, I am still trying to recover and embrace the physical limitations my cancer treatment left me with. Some days, I almost feel normal. Other days, I feel the full weight of everything my life has been. Each day, I do my best to deal with everything cancer has left me and make the most of it. I’m proud of myself for that.
I have realized over the last six years that battling cancer may not end in one final moment of victory, where you can put down the sword and say “it’s finally over”. Maybe surviving cancer, for many people, looks like coping with the physical and mental impacts as best as they can, and hoping for the day when they can learn to thrive despite whatever lingering challenges cancer left them with.
I like that version a lot more than the one final moment of triumph where it is onward and upward from there.
It feels like the truth.
It feels real.
Aspen Heidekrueger is a leukemia survivor who underwent three years of chemotherapy treatment during high school. She is currently an Intern with Cancer for College, and has been a CFC scholar for the last two years.
In tandem with pursuing her bachelors in Philosophy and working with wolves at the Colorado Wolf and Wildlife Center, Aspen is a social media influencer. She is determined to use her experiences to connect with people from different walks of life. Her goals include creating content that can help share her story, spread awareness, encourage, and support other cancer survivors and those who battle chronic illness. You can read about her experiences with cancer on her website and blog Complicated Cancer or watch her relatable videos about what it is like to be a cancer survivor on her TikTok.
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Photo credits: Darina Belonogova, Paul Gilmore, Malicki M Beser, Logan Armstrong, Aspen Heidekrueger, Heidi Fin