Twelve years. That’s as far as the survival curve went.
First it step-laddered down to about 75 percent at five years.
That’s good, I thought, right?
But then it steepened, plateauing at 40 percent.
When you’re diagnosed, they warn you not to pay much attention to survival curves. One step at a time, they say.
Fresh from surgery to remove a football-sized liposarcoma from my belly, my scar ran straight from breastbone to pelvis. Would my path be as linear? Or would it curve downward to early death?
I hoped to land on that 40 percent line.
But why did it stop at year twelve? Did the researchers think it was useless to count further?
I was just 26 years old. Had I already lived two-thirds of my life? How long would I extend?
Five years. That’s the number friends and family associated with cancer.
“Oh it’s been five years! That’s great! So you’re in remission then?”
They know of the stereotyped stories of cancer – the routine of chemo, radiation, surgery – then the rhythm of scans until five years arrives. Then, if you’re still around and cancer is still gone, you win the remission race.
You’re supposed to drop with gratitude at the finish line, kiss the cancerless ground, change out of your cancer clothes and rejoin the cancer-free world.
Five years is tidy, certain, comfortable even. You can tie a bow around it.
But for so many of us, there is no five years, or even ten. Our cancer is chronic – a relay, a marathon, a meandering stroll. It’s messy, uncertain, uncomfortable. It confuses people.
“Wait, you have cancer again?” they asked me. I had made it four and a half years. A recurrence cancelled my cancer-free party.
I started to wander off the curve.
Most people didn’t know what to say when cancer came back again three years later.
“It’s kind of like a chronic disease,” I told them. “Tumors can come back whenever.”
They wrinkled their brows.
Now it’s been another four and a half years – a graceful period of clear scans.
“So you’re in remission again?” people ask.
It can’t be called remission. My doctors call it a disease-free interval.
I call it time to be seized, or denial, sometimes worry, often respite, definitely another chance, maybe even hope.
It is time that allowed my brain to get some degrees, my feet to travel the world, my heart to get married, my hands to help others, my body to birth two children.
My first tumor arrived twelve years ago this month. I am healthy and grateful, but still not nestled in the comfort of cure.
Twelve years. I am at the end of the curve. From now on, I venture beyond it.
Stephen Jay Gould reflects on the limits of survival statistics in The Median Isn’t the Message.
Interpreting survival curves.
5 thoughts on “Twelve Years”
Thanks for the uplifting post Dr. Julia. I sent to my oncologist/liposarcoma specialist at U of Miami. I am three years out.
John D (liposarcoma survivor and NU grad)
Thanks John! Congrats on three years!
Thank you for this, it’s so we’ll expressed. I’m 18 months post treatment for synovial sarcoma. Here’s to more time, another canserversary, and a cure.
Thank you. Sending love & strength to you.
Julia, your wonderful parents are friends we met years ago at Chautauqua.
Our family has a cancer journey: John born 1062,was diagnosed with parotid cancer,treated with chemo and radiation. A year later a lesion was removed from his lung. No cancer for 3+years.
Grandson,Tommy diagnosis’s day with Smallroundcelldesmoplastic in Nov 2016. Treateed with chemo, radiation and surgery at JohnsHopkins andSloanKettering He died Nov2018He was a remarkable young man of Faith And Grace. John is uncle to Tommy(blood relative). As pediatrician we thought you woul interested in these 2 rare cancers.
We pray for your continued blessings and health
Comments are closed.