Very Well Said

Lost in Translation after Cancer

by Suleika Jaouad

 

It took me a long time to be able to say I was a cancer patient.

Then, for a long time, I was only that: A cancer patient.
Now that I’m done with my treatment, I’m struggling to figure out who I am.
On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger.
The constant flood of doctor’s appointments, blood tests and phone calls from concerned family
and friends have trickled to a slow drip.
But off paper, I feel far from being a healthy 26-year-old woman.
 

My disease has left countless invisible imprints in its wake: infertility, premature menopause,
chronic fatigue and a weakened immune system.
And that’s just the short list.
Then there are the demons of depression and the fears of relapse that sneak into my head
just when I think I’ve gotten a grip.
The rattle of a cough in my chest.
A strange bruise on the back of my leg.
A missed call from my oncologist.
Each of these triggers rips me out of my fragile, new reality leaving me to wonder:
What happens if the cancer comes back?
Will I ever feel normal again?
And most daunting of all, how do I move forward with my life?
 

Writing about all of this has not come easily to me. It is hard not to speak in clichés about cancer.
It can be even harder not to feel as if I have to live up to those clichés.
I sometimes feel a deep sense of guilt for not doing a better job of making lemonade out of metaphorical lemons.
I know that I am one of the lucky ones, and I am deeply thankful to be alive.
In writing about the problems I am facing now, I worry about sounding ungrateful — or worse yet, insensitive to my friends in the cancer community who may never go into remission.
 These fears color the unexpected challenges that emerge during life after cancer, and can overwhelm the need to talk about them.
After all, I’m supposed to be better.
So why don’t I feel better?
 

When I finished my last cycle of chemotherapy friends and family congratulated me on being “done.”
What they couldn’t know was that in some ways the hardest part of my cancer experience began once the cancer was gone.

While in treatment, I had been surrounded by the world’s best army: my supportive family and friends and a brilliant medical team who had worked tirelessly to keep me alive.
The goal had been to cure the cancer.
Now that I had survived the “cut, poison, burn” of the disease, I no longer had the cavalry running after me.
Suddenly, I found myself standing dazed and alone in the rubble, wondering what had happened and where everyone had gone.
 

The inner scaffolding that had kept me strong and brave during my treatment had crumbled.
I no longer wanted to be anyone’s inspiration.

I’ve spent the last year of my life searching for the B.C. (before cancer) version of myself.
I’ve looked for her all over the city — the stores she used to frequent, the coffee shop where she had her first date, the apartment on Canal Street that she shared with 10 roommates her first summer out of college — but the more I look, the more I’m beginning to realize she no longer exists.
There is no going back to my old life.
The problem is I don’t know how to move forward either.
For many, the experience provides a renewed sense of life and purpose, but the task of rebuilding your life after something as devastating as cancer can also be a deeply disorienting and destabilizing one.
 

I have learned since the day of my diagnosis that cancer affects all of who we are.  There was no aspect of my life that wasn’t torn apart as my body was literally torn apart. In my case, after my treatment ended, I experienced mental health issues that were more intense and more debilitating than I’d ever experienced before in my life. This thing that we experience that is casually referred to as post-treatment depression is much more than just that. It has many facets: spiritual, psychological, social, medical and financial, among many other things.  I was diagnosed with chronic low-grade depression and anxiety caused in part by Tamoxifen, a medication that is intended to reduce the risk of developing breast cancer again and I will be taking for several years.

We like to think of the end of cancer treatment as the closing of a chapter, but what most people don’t realize is that the emotional struggle continues long after.  This time I’m finding that there are no protocols or discharge instructions, no roadmaps or 12-step plans to guide me back to the kingdom of the well.

The road back is going to be my own.