The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.

After Cancer You 2.0

by Erin PerkinsSurvivor, Breast CancerFebruary 8, 2024View more posts from Erin Perkins

It’s not always straightforward. It doesn’t “end after treatment ends.” Of course, treatment doesn’t always end. Even when it does, the wonder at whether treatment will be needed again flickers continuously on and off in my brain. On. Off. On.

As an active young mom, writer, contemplative, and AYA cancer survivor, I think a lot. I run circles of ifs and probables, and I sit in carpool wondering about my friends’ kids whose mom can’t pick them up because she is gone too soon. Parts of me are gone, I think, but I am here. I don’t understand why I am and she isn’t. I don’t understand because there is no reason. It is as it is. I’m left to my thoughts, to my fears, to my curiosities, to my grief. It’s sad here in what I call “The Great After.” It’s real, it’s mucky, it doesn’t make sense, isn’t straightforward, isn’t safe, comfortable, or predictable. It’s not linear, and it can’t be controlled. It is as it is.

It is as it is. I had cancer, I lost a lot, and yet I live. Now what?

The circles of thought, the On and Off switch of wonder/what if/fear swirl along like a whirlpool in my mind as I go forward, dipping my toes back onto what looks like solid ground, cautiously hopeful, wanting to stand, move, live on. I’m wobbly here on this new ground; dizzy. I get tired quickly. Because the swirling is always there, my friends gone too soon are always there. The sorrow, the wanting to know why, the fear of what could come is always there. And yet I live.

I was recently at a sweet retreat with a few women from the young breast cancer community, and we were asked to fill out a Venn diagram to convey our mental health we knew about ourselves from before cancer and after. It was not the intention of the presenter that the before would be more positive than the after, but it felt like that was the “correct” answer. Reluctantly, not wanting to be the only one in the room to not understand the assignment (kind of an MO of mine…), I asked her about it. “Does it need to be positives before and then negatives after? Or what if I feel like I have become more mentally healthy because of cancer, is that okay?” HaHa. The answer is, of course, yes, it is totally okay, but is it what I normally hear? I don’t think it is.

For me, when I was planted on the hill of AYA Cancerland, I bloomed. After the pain of diagnosis and the fear of death calmed down to a dull hum, after treatment began and I found the courage to ask my prognosis, after the answer was positive, I settled into a little cancer nook. I found a place to sit and listen and learn, to research and advocate, to commiserate and encourage. It is oddly cozy here. It’s like the proximity to death’s reality was the soil I needed to bloom. I found the cadence of my voice. I became more confident in myself and in my fellow cancer-having community. I joined the chorus of diverse voices singing the song of our truths, our needs, our hope for cures to be found.

Old Erin merged with Cancer Erin and settled in. I call her You 2.0. She’s even more communal than Old Erin. She sees how we are all one. She set down a lot of baggage, and she is seeking healing for the things that couldn’t be left behind so easily. Her desires are clearer, easier to access, and she’s beginning to be able to explain them. Her heart is more open. She is trying to slow down, be more intentional with friends, in her marriage, and with her children.

I am the same as I always was: a quirky realist with anxiety, prone to laziness, Church-going, contemplative, community-driven, Christian, a loyalist, cautious, curious, friendly, funny, who does hard things even though I would rather do only easy things. And I am blooming, rooted deeper, opening up, growing. The felt expansion feels like peace. It feels like a deep breath out. It feels like clarity.

I have always been an advocate for vulnerable populations. I have stood with the most beautiful people through life’s cruelest circumstances, from fleeing a home country to seek refugee status in the United States to start over from scratch, to communities ravaged by rogue armies stealing children in the night and forcing them to fight, to people being sold into modern-day enslavement. If I haven’t sat next to humans in these situations, I have stood with them, and their strength to keep going is what has rooted mine. When I found myself entering the vulnerable population of Cancerland, I didn’t skip a beat and immediately joined the cacophony of voices advocating for us. First, I needed to be educated on breast cancer and all of its highly misrepresented nuances. I needed to meet people going through it, get connected with organizations, and listen in. I needed to sit in my new little nook and learn about AYA cancer too, about how we got here, and why there is still no cure.

What stood out most for me in this phase of learning was missed and delayed diagnoses due to race, age, and under-education. My own story was one of under-education. I was 34, I was nursing, my lump seemed to move around, my closest relative to be diagnosed with breast cancer was my paternal Aunt and she had no genetic mutations to note. Because I was not properly educated on the possibility of being diagnosed so young, and because we were in a global pandemic and I had high anxiety manifesting into a fear of germs, I waited to go to the doctor. When my cancer was found to be Triple Negative breast cancer (read: fast-growing, aggressive) and Stage IIB, I realized the waiting could have cost me my life. Through research and community, I found a small organization called The Young Breast Cancer Project and read the mission statement:

“The Young Breast Cancer Project advocates for early detection of disease through breast health education. We elevate young survivors’ stories and forge alliances with the medical community to reduce delayed diagnoses and help save lives.”

“YES! Let’s do this,” was my immediate reaction, and I haven’t looked back yet. I get to serve on the board of directors of The Young Breast Cancer Project now. I get to sit with creative minds who desire change and we make it together! Most recently we launched our new program called Survivor Student Alliance, where I got to stand next to my dear friend I met through the Triple Negative Foundation Zoom chats, and share with medical students (read: future doctors, oncologists, OB/GYNs, surgeons) about how vital they are in the process of early diagnoses. We got to tell them about our sisters who have died due to this immense oversite. We got to tell them we are here, we need their help, and we got to see them receive it with grace and intention.

There’s a new freedom here in survivorship. I know myself, and I can identify what I need to fill my cup so that I can pour out to my family, friends, local and wide community. I know how to stand so I feel strong, I know how to listen so that others feel heard, I know when to speak and when to stop (and sometimes I even get it right the first time… Nah, I don’t). All I can really say to describe any of it is that there is so much clarity. I’m focused here, determined, motivated, active, intentional, confident, and I am those things even in the midst of uncertainty, too much knowledge about scary things like cancer and death’s reality. I’m blooming here, and I’m doing it scared, alongside beautiful, vulnerable humans just like me. Like a deep breath out, I’m alive, and I’m living.

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