The Next Chapter: Reflections on Living Five Years with Stage IV Cancer

Engage with the West Michigan Woman Community!

I was sitting at home, refreshing my healthcare portal page waiting for blood test results that were taking an exceptionally long time to come through, and I finally decided to give it a rest and do something else. The test result I was waiting for was my tumor marker, which, if it has risen notably, can be an indicator that my cancer has progressed. I switched to Facebook to check in with my recreation group and accidentally clicked on my global metastatic breast cancer support group instead. I don't visit this one often, as it can be overwhelming at times, and deeply unsettling at others.

The top post was from a woman who is dying.

At five years in with Stage IV metastatic breast cancer, being stable the entire time and still on first line of treatment, I try to imagine that this won't be me anytime soon. I remind myself that I have friends who have made it longer. Eight years; eleven years. So far. But here it was, right in my face, while I was already feeling incredibly anxious about my bloodwork, and also worrying I had jinxed myself by talking too much about my five-year cancerversary, as well as having the audacity to schedule a celebration around it. Surely, I would alert the gods of pestilence and they would turn their focus to me, a hubristic middle-aged woman living in West Michigan.

The post from the woman who is dying, rather than being depressing or scary, was a bit freeing in that moment. She talked about how knowing she was near the end had provided her a greater capacity to love, and how that love would live on long after she was gone. She also talked about how fear gets in the way of making deep connections and living our lives to the fullest. And that really hit me, because my own fear—of the unknown; the known; my mortality—has paralyzed me at times. While waiting for my results, I was heading down a complex path of what-iffery, and it was definitely getting the best of me. This woman's writings gave me aspirations of peace.

But, I was still waiting.

In these moments, when one test result could tell me whether my future will be long or short, it all feels very arbitrary. Like a coin toss. Like the universe could intervene as it spins in the air. But, the reality is, it either is or it isn't. And it would be silly to think otherwise; but, I can tell you, many of us in this situation do.

Living with a cloud of impending doom and thoughts of mortality is one of the harder parts of this disease. So is reading about the people who haven't had it so lucky, and are suffering through harsh treatments or facing death, or have died.

As hard as all of this is ...

It's easy to become complacent. When I was first diagnosed with Stage IV cancer, everything changed. I once wrote about the shifts in my outlook and priorities in one of my posts in a series our friends here at West Michigan Woman granted me the privilege of writing. But, the longer I go, the more I lose a bit of urgency, it seems. I argue about and fuss over petty things. I take my relationships for granted. I say "yes" to projects or activities I want to say "no" to. I find myself, at times, living like there are many more tomorrows. All the things I promised I wouldn't do anymore once I learned I had incurable cancer. Just now, when I re-read that post about living more thoughtfully, I thought, "Oh, sh!t!"

It's easy to forget it's happening. There are times when I don't remember I have cancer. And then I'll sit up abruptly in the night in realization and it's like awaking to a nightmare versus awaking from one. Other people forget, too. And, someone recently asked me, "Can't that be a good thing?" It was really difficult to rebut that. Of course, I don't want to be defined by my cancer. I want to look well and feel well without the limitations many, who are also in active treatment like I am, experience. But, the other part of me wants people to know that my worries are weighty—and to treat me more gently and more empathically with that knowledge. And, truth told, my ego wants people to be impressed with how well I am handling things (when I am handling them well, that is). That's just the way I'm made.

It's easy to get cancer fatigue. I'm tired of it. I sometimes tell people I don't want to do it anymore: get blood work, go to appointments and get squeezed and poked and analyzed like a specimen, have scans and the accompanying scanxiety. I just want to be normal. But that's unrealistic—and impossible. And, I don't want to give up by any means; I'd just like a break. I get the sense that people in my life get exhausted by it, too. So, I feel pressure to balance out the "I'm not fine" moments with measures of humor, mundanity and snapshots of me having a gay ol' time. This makes me feel better, too, so it's not like it's just for everyone else.

It's also easy to feel incredibly fortunate. I'm thankful for the opportunity to be able to vent the difficult emotions I've been feeling at the five-year mark. Gratitude and surprise and optimism have also come with such a big and unexpected milestone.

What's next then? That's what I've been asking myself as I've been writing this.

I think it would be easy to beat myself up for not sticking to all the proclamations I made in my past writings, or to scold myself for not yet having mastered healthier living. But, the word of intent I chose for 2024 is "Forgiving" and that's where I'm going to try to place my focus going forward. To try to not hold myself to expectations I don't put on others. To try to accept that a big part of living is LIVING and that comes in many forms—some of which may be ill advised, but also a lot of fun. To try to acknowledge that being afraid is normal and not something to feel ashamed by. And, wanting others to feel sympathy for me is, too.

In short, I'm going to try to just allow myself the grace to be me and everything that comes with it.

Allison Kay Bannister has been a West Michigan resident since 1987 and a professional writer since 2002. A GVSU alumna, she launched her own freelance writing business in 2017. Allison is a cookie connoisseur, word nerd, aspiring gardener, and metastatic breast cancer thriver who loves traveling in Michigan and beyond, and enjoys art, world cuisine, wine, music, and making homemade preserves.

 Photo Courtesy of Allison Kay Bannister. 


More stories you'll love