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This Is What It’s Like Inside My Brain During Scanxiety

October 9th, 2017 |
Survivorship

by contemplatingcancer | Caregiver: Soft Tissue Sarcoma    Connect


This was originally published on ContemplatingCancer.com

My finger trembles as I push the elevator button. I know the floor number, but I don't want to go. Maybe we can still turn back. Do we really NEED to know the results? Let's pretend it's good news. This is the longest elevator ride of my life. Are we trapped in here? Maybe we will all die in this elevator, cancer or not.

Oh.

The door opens. My legs feel like jello and concrete at the same time, but somehow they carry me off the elevator and into the waiting room.

The receptionist seems especially cheerful. Maybe she's compensating for bad news. Maybe she guessed it from the doctor's tone of voice. The MRI tech said, "Good luck." Why do we need luck? Something must be up. New tumors, growing tumors -- I might as well put the mortuary on speed dial.

Deep breaths. Everything's going to be fine. We'll beat cancer for good and live a normal life. The doctor will say that everything looks great and send us home to celebrate. Of course it's good news. Why are we even here? We came all this way when everything is fine? They should have sent the results via text message.

We have reason to worry and reason to hope. Our fears and optimism are both justified. We are supposed to live in the uncertainty zone, but I don't like it here. It's horribly uncomfortable, and the anxiety is suffocating.

What's the worst that could happen? Well, death, to be frank. People die of cancer all over the world, and all the positive thoughts in the world cannot change that fact. These worries linger whether we acknowledge them or not. They can fester in our subconscious, or we can confront them head on, but there is no avoiding them.

As hard as it is to admit, we know the truth. This might happen.

Or… maybe it won't.

What's the best that could happen? A long and healthy life. Maybe our story will become one of long-term survivorship. Maybe we will provide hope to cancer patients for decades to come. Maybe we will celebrate with tears of gratitude and a night on the town. We might fill our life with adventure, love, friends, family, work, and hobbies instead of incessant appointments. We could return to truly LIVING.

This scenario is also possible.

So, like a pendulum, we swing between the two extremes. Life or death. What's it going to be today?

Except, bad news might not mean death either. Active cancer wouldn't define an expiration date. It would change things dramatically, but second remissions or living with chronic cancer is sometimes possible. There are treatment options, should we need them. Once we have results, we can move forward, but the not-knowing feels intolerable.

There is a reason it has its own term: Scanxiety. It's not just worry, or nervousness, or even fear. It's a feeling in my gut and head and heart all at the same time. It makes me want to cry, vomit, and scream. It makes me want all the answers right now, but also, never. I want to run as far as I can, while unsure my legs can even take a single step. I want to know all the statistics and stories, but block them out at the same time. I don't even know what I want, short of three simple letters.

N.E.D.: No Evidence of Disease.

Scanxiety is not just fear of what COULD happen, but also remembrance of what HAS happened. Everyone dreads a cancer diagnosis, but they don't really know what it will be like. But now that we have been through the depths of cancer hell, we REALLY want to stay as far as physically possible. We remain hopeful, yet we also know we have no control. We have to wait and see.

I tap my toes on the floor of the waiting room. I run my fingers through my hair and clench my fists. The beeper buzzes, and a woman with a clipboard calls us back. We are left alone in Room 5. The doctor knocks and opens the door. Deep breaths. This is it.

We'll let you know how it goes.

What thoughts go through your head while you're getting to your doctor's appointment? Share them in the comments below!

Image courtesy of Valeria Boltneva
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Caregiver: Soft Tissue Sarcoma

Julieann is a 26-year-old chemist and mom living in Salt Lake City. Her husband, Ken, was diagnosed with mesenchymal chondrosarcoma in early 2016. Her blog, contemplatingcancer.com, examines life through the lens of an aggressive cancer diagnosis.  

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