How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
My family milled around the hospital room waiting for me to sign all the paperwork. This part should have been quick and easy — a few signatures, dates, and initials.
But my pen hovered over the paper, frozen, as I stared at the words written in bubbly handwriting under the heading “Procedure.” Craniotomy.
Tears spilled down my cheeks, and I looked up at my dad desperately. “My name is written on the same page as the word ‘craniotomy.’ How did this happen?” I pleaded.
“I don’t know,” he responded, with a look of fear and heartache that I have become all too familiar with in the 8 years since I was first diagnosed with stage 3 breast cancer back when I was 25 and stage 4 breast cancer when I was 29.
A few hours before I held that terrifying piece of paper in my hands, I was considered NED — No Evidence of Disease. I had no detectable cancer in my body.
Yes, I had been a stage 4 metastatic breast cancer (MBC) patient for over two years, so I knew that I would always have breast cancer cells floating around my body; that I would be in treatment every day for the rest of my too-short life; that at some point, the treatments would stop working and the disease would kill me.
But for now, as of that afternoon, my treatments were working. Or so we thought.
And then I got a headache that didn’t go away for a week, so my oncologist ordered a brain MRI.
Within hours of the scan I was signing the paperwork to give a surgeon permission to cut a 4 centimeter tumor out of my brain — one of 3 tumors that had been quietly growing while I naively celebrated being NED.
The next morning a surgeon did his best to return my brain to its precancerous state. Recovery was a beast, but two years later I am still here to tell my story.
After my brain surgery and radiation, I returned to my usual treatments — which I will be in some form of forever. Right now that means taking handfuls of daily pills and receiving a monthly injection with a needle so large that the first time the nurse saw it, she audibly gasped.
Every 3 weeks I extend my arm for an infusion that, by the last drop, makes me want to rip my skin off just to let the sea of chemicals within me spill out.
Through it all I watch MBC friend after friend die around me, and I keep one eye glued to the calendar as my expected expiration date comes and goes.
It’s as if I’m stuck on a high wire, and all I want to do is collapse onto the safety of solid ground — the safety of a modicum of certainty that at any moment I am not going to teeter over the edge, my balance lost to an unexpected gust of wind.
But stage 4 disease does not allow for the luxury of this safety.
Instead, the disease is constant upheaval. Just when I feel somewhat settled, I find out that the cancer has spread to my brain. Or I suddenly find that I cannot stay awake for more than 5 hours at a time, or I develop such searing back pain that my husband must scoop his arms underneath me every morning to lift me out of bed.
Another day I find out that an area of my lungs looks abnormal on my latest scans, but it’s unclear whether or not it’s a tumor, so I am left wondering: Do I have lung mets now, or not? Has the cancer progressed, or not?
And once again my life is chaos.
This is my normal.
But then I wake up to a little jar of flowers on the kitchen counter next to a note from my husband that fills my heart for the entire day.
I pick up my nieces from school one day and watch their faces brighten with joy as they sprint across the shaded dirt toward me, flinging themselves into my body for what their younger selves used to call “the biggest hug in the world.”
On the way home I hear a tiny 2-year-old voice say, “Auntie, I just love you so much,” and I think to myself: Perfection. This is perfection.
In these moments it does not matter if I know whether or not I will see my next birthday. All that matters is that those girls are in my arms — that my husband is by my side.
The chaos, the pain — it may feel all-consuming, but there is so much beauty and joy to be experienced in this metastatic life, too.
When the fear creeps up my body like a rising tide, I snuggle closer to my husband and listen to the soothing thud of his heartbeat — a metronome of life. I am learning that getting lost in the rhythm of his heartbeat saves me from drowning in my fear. It pulls me back onto dry land.
If I wake up in the morning feeling nothing but despair, knowing that I have yet another day of appointments ahead of me, I’ll do my best to ignore my near constant headaches and take my nieces to the forest in between clinic visits. There, we traipse around ferns looking for fairies and trolls, and all feels right in the world. Cancer be damned.
Of course there are days when my fatigue knocks me over like a tidal wave, or the pain simply wins, and all I can muster is survival that day, let alone a forest adventure.
I have also learned that I will pay for every forest adventure with days in bed, heightened back pain, more intense headaches.
But in between all the side effects and symptoms, the adventures are still there — are always there — waiting to be had.
It can be exhausting to constantly swing back and forth between the extremes of human emotion like this — between heartbreak and joy, brain surgery and love notes.
But the alternative is to simply live in the darkness of cancer, and I’m not willing to do that.
So instead I let the pendulum swing — and some days I nudge it along — because when those moments of sweetness hidden beneath the chaos come into view, they change everything.
They are what get me through the constant upheavals and disappointments. They remind me that in the end, all the pain, all the hard work that I must put in to survive, it’s all worth it for even the chance to keep living this complicated, beautiful, uncertain life.
Diagnosed with stage 3 breast cancer at 25 and stage 4 metastatic breast cancer at 29, Rebecca Hall has become an impassioned advocate for the metastatic breast cancer community, sharing her own story and calling for advancements in research and increased awareness. Rebecca continues to share her experiences through her blog Cancer, You Can Suck It. Her writing has been published in Glamour, Wildfire, and The Underbelly. She’s been a featured speaker in 3 literary events and interviewed on several podcasts and radio programs. Her writing has also been adapted into a short film, bare. In addition, Rebecca offers free yoga classes to women affected by cancer. She lives in Santa Cruz, California with her husband and dog.