The Elusive Wonder of Foreverland

Editor's Note: This is part of Amber's series Surviving Cancer: A Personal Journey. Please see other posts in this series.

Imagine: You’re doing life, walking along in the to-dos that are pre-planned and programmed for efficiency. You’re living life in its fullness as you live today for tomorrow and tomorrow for next year. You’re choosing your steps wisely and learning from the missteps. You’re adapting occasionally to the last-minute responsibilities that pop up. You’re setting goals to achieve the up and over. And of course, you’re chasing dreams. It’s lovely here. Not without its hiccups, but it’s manageable, and for the most part, straightforward. 2 + 2 is 4. The sky is blue, the grass is green, and rainbows come after the rain. Things make sense.

Then — a jolt. In an instant, you find yourself hanging right side up in an upside-down world. Everything just familiar enough but eerily distorted; normal but just off-center. To-dos flip backward. Life’s fullness suddenly constricted to now-ness. Footprints are handprints. Adaptation the norm, not the exception. Goals go inward. Dreams turn fuzzy. 2 + 2 is never again 4. The sky is green, the grass is blue, the rain never stops, and rainbows become elusive. Sense is now fixed at an odd tilt to the kilter.

You look around. You squeeze your eyes shut. You try to shake it off. You try to pray it away. You search for a reset button. You rationalize. You justify. You strain for the old sense of things because the new sense of things seems like nonsense.

In an instant, you find yourself hanging right side up in an upside-down world. Everything just familiar enough but eerily distorted; normal but just off-center.

This isn’t a new version of Alice in Wonderland, no. (But thank you Lewis Carroll for providing the perfect metaphor). Rather this is Me in Survivorship. If you’ve been following this blog series so far, I’ve shared my story from cancer diagnosis through treatment and, with that, some truths about cancer that often go unsaid and therefore, unheard. So, today’s truth: Cancer survivorship may be the most misunderstood experience of all. And the least talked about. And the least listened to.

I have a very vivid memory of my first encounter with the word survivorship. I was about to leave the office following my biopsy and the nurse navigator handed me a big accordion file folder to help keep me organized in the days, weeks, and months ahead. When I got home, I perused the file labels:

Diagnosis

Pathology

Treatment

Insurance

Financials

Procedures

Physicians

Reports

Survivorship

Words were spinning. And even though most of those words were recognizable to me, I struggled to find context and meaning for them. Mind you, I hadn’t even been officially diagnosed yet. But as it was, I found myself instantly thrown into this right-side-up, upside-down world. Everything seemed like nonsense. I was still unable to think about the concept of cancer, let alone what each of those words meant in cancer’s context. And then putting “me” and “cancer” together? Absolutely nonsensical. Anyways, there was a word that I’d never seen before: survivorship. The thought that came to my mind: “Survivorship? Wow, I guess I need to start writing letters to my surviving family members so that when I die, they can find them here and remember how much I loved them. And I better get that will done, now.”

Several weeks passed before my definition of survivorship was corrected — in chemo class actually, when the nurse mentioned the word and I asked her what it meant. “Oh, survivorship? It’s that phase that comes after treatment is completed,” she said. “Just focus on getting there and we’ll talk about it when it gets closer.” “Okay, then,” I thought. “I sure hope I get there.”

I left chemo class picturing survivorship as this space on a drawn timeline, one that I could color in when it was finished. Thinking that it was the last chapter in my That One Time I Had Cancer book. Imagining that it was No Mo Chemo parties coupled with “We DID it!” paraphernalia. Or that it was this statistical graph where those who survived herded to when they were “done” with it all. But here’s the deal: While that nurse’s definition may be partly accurate, from the actual INside of the cancer experience, it’s quite inadequate.

Rather, survivorship is in the whole cancer experience. It’s getting up and going to the next appointment, whether it’s appointment No. 2 or No. 282. It’s treatment. It’s surgeries. It’s putting one foot in front of the other even when the direction you’re going is unknown. It’s scanxiety. It’s the years and years later — symptom-free or symptom-full. It’s the upside-down-backwards-inside-out-transformation that comes the very second the words “You have cancer” are spoken out loud, no matter what follows, no matter the stage or the grade, no matter the statistical probabilities or the prognosis.

Survivorship is also lonely. Not because there aren’t people who care, but because everyone else exists in their non-cancer normal. Even the caregivers to a degree. But for me and many other patients I know, the free fall into this twisted unknown changed us forever; the not-so-wonderful Wonderland we landed in is now our Foreverland. We struggle to relate because our “before” will never be again. We often don’t measure up to the expectations of those around us to “be done with cancer” because Foreverland is our forever land. We’re unable to “move on” due to chronic effects that only we know about because, from the outside, we look all better — curves are where they should be, hair is back, our skin is all pink and not at all pallid. We feel misunderstood because if we speak up about our experience, it’s deemed complaining, “letting cancer define us” and “choosing victim not victor” instead of our authenticity being accepted as enlightening. We feel disconnected, wandering in a land that is uncharted, skewed, wonky, and uncertain, where progress is ambiguous at best because reference points don’t exist. Are the steps we’re taking forward? Backward? Upside down? Are we going in circles? Are we even moving at all?

Survivorship is in the whole cancer experience. It’s getting up and going to the next appointment, whether it’s appointment No. 2 or No. 282. It’s treatment. It’s surgeries. It’s putting one foot in front of the other even when the direction you’re going is unknown.

And survivorship is often dismissed. It’s reduced to a check box on a cancer list. Diagnosis, check. Surgery, check. Treatment (if needed), check. Survivorship (if lucky enough), check. But what if we changed the way we think about this experience? What if it is more than a phase or a check box or a thing to talk about if lucky enough to get there? What if we talked about survivorship from the very beginning — that cancer and survivorship and showing up to each moment are all one and the same, and that it actually has the potential to bring with it incredible richness?

Survivorship (aka all of cancer) for me has been extremely challenging. I’ve hit every snag along the way. I’ve been in the “this only happens to the rare few” column every single time. I’ve struggled with relating to the norm, not just in the physical sense but in all the other ways, too. And yes, while I survived treatment and am technically in the phase called survivorship, survivorship doesn’t come with an end date. I am, and will always, wander in my Foreverland. In my wandering, though — in my surviving — this is the richness I’m learning:

• To manage my responsibilities with a lot more intention and grace, and to extend the same grace to my family and friends.
• To preserve my cancer-wrecked-capacity so that my family gets the best of me first — to work more realistically, to hold more accurate standards for myself, to communicate my needs more effectively, and to be more diligent in creating and respecting boundaries.
• To keep speaking of my cancer authentically so that I can process its purpose, even though many are ready for me to conclude talking about it.
• To value the present moment in ways I never did before, to choose the slow lane, to leave space for self-care (for myself and for others), to connect more to my inner self and value her more than I ever did before, and to give myself grace when I struggle with the long view, the up-and-over goals, and dreaming for the future.
• To hold space for grieving what is lost, and for calling out what I’m grateful for, because both matter.
• To flex more patiently to last-minute changes because the out-of-control is more common than I used to believe; to continue being intentional about leaving my anger issues and tightly wound need for control behind.
• To get up and try again and again without the burden of shame.

What if we talked about survivorship from the very beginning — that cancer and “survivorship” and showing up to each moment are all one and the same, and that it actually has the potential to bring with it incredible richness?

Cancer has both destroyed and rebuilt me, but it’s exactly this that cancer teaches me: Both can exist together. The free fall can be freeing. Backward can be forward. And as Alice learned, Wonderland (twisted, upside down, and inside out as it may be) can also hold beauty in the most unexpected ways. Elusive, yes. Worth the hunt, absolutely.