First comes the shock. In the (tongue-in-cheek) words of my friend, teacher and mentor the late James Tankard:
Cancer? Me? But I’m too special to get cancer.
People told me I was lucky — great doctors, good insurance, look at the bright side. People expected me to be positive and that’s when a disconnect happened.
Why didn’t I feel lucky? Why didn’t I feel positive? Who was I now, anyway?
I used to be someone’s wife, but I didn’t feel like a woman anymore. I didn’t even feel human.
I pictured myself as some strange creature dragging around the house. I’d stare out the windows for a while, and then go back to bed.
No one warned me of the horror of cancer.
I felt like I was watching a movie, only I was starring in the movie too, waiting for something to pounce from every dark corner. That was my daily reality.
Sometimes I’d wake up scared, and think: Thank god that was a dream! And then I’d look down and see the port-a-cath in my chest and I’d remember.
No one warned me of the loneliness of cancer.
A few months after my diagnosis, I went to dinner with my husband. Sounds pleasant enough, but as I took in my surroundings, I imagined another woman in my chair — the shadowy figure who would come after me. I barely touched my food.
Friends would talk about their lives, and I couldn’t quite follow what they were saying. They didn’t dare bring up cancer or my treatment. They were afraid they’d say the wrong thing.
A pancreatic cancer patient spoke of an invisible wall. She could see her brothers and sisters at the foot of her hospital bed. “I don’t want to be on this side of the wall,” she said. “I want to be on the other side, with all of you.”
I tried a support group, but that just made things worse. When I met a patient who was doing badly, I’d think: That’s me, six months from now. When I met a patient who was doing well, I’d think: I wish I was you!
People talked about the “new normal” and I felt like saying: I’ll bet every man who ever jumped off a bridge had some “new normal” imposed on him.
I’m sure some wondered why it was taking so long for me to become Lance Armstrong. My friends remembered the woman I once was, and on some level they resented what they got in her place. They understood I was not to blame, but cancer can wear down even the kindest people.
Some suggested counseling. I thought that was like telling people on death row that what they need is counseling. Or people in Darfur. Try telling citizens of Darfur the only thing standing between them and happiness is counseling.
But I knew what they meant. I knew I had to adjust because I couldn’t have what I really wanted, which was—to quote author Reynolds Price—my old life back.
But with a lover, you move on. It may seem like it takes forever, but eventually you find someone. With cancer, there is no moving on. In that way it’s more like the death of a child. You can have ten more kids, but you never stop mourning the one child you lost.
In this case, what I lost was the woman who’d never had cancer. She was gone for good.
On a soap opera I saw a cancer patient attend a large family gathering. The patient’s mother, father, brothers, sister and cousins were talking and laughing, oblivious to the woman standing behind them. The camera panned the long table that accommodated some 20 people, including the patient’s infant son, sitting on his aunt’s lap.
The cancer patient whispered through her tears:
It’s not that I’m asking: Why me? It’s not that I think I should live forever. I just want to see how it all turns out.
The show was as cheesy as they come, but even so, the words rang true.
In September I will celebrate seven years of survival. I was indeed one of the lucky ones. But now I’m trying to help a newly-diagnosed friend through this experience, and I feel utterly inadequate to the task.
I wrote to her:
The surgery is going to make all this a lot more real. So far it probably feels like doctors are poisoning you for no good reason.
You may be frustrated because you can’t unlock the door that will return you to the life you knew before cancer. Did you ever have those dreams where you couldn’t remember the combination to your school locker? You’d try one thing, and then another, but nothing worked.
What’s happening to you is a huge loss. You’ll just have to grieve for as long as it takes.
When I was on chemo, I’d pass a shop, and I’d remember how I had ice cream there three months ago, and then I’d think: You didn’t know how good you had it. You had all the freedom in the world. And then this terrible longing would overtake me.
Your surgery will be a burned bridge. You will understand then, in ways you can’t now, that your life has irrevocably changed, and a new life is beginning. It will be a bumpy beginning, but it will be a beginning.
But of course, this isn’t enough. Not nearly enough.
I’m reminded of the Twilight Zone episode called Little Girl Lost. A girl had rolled through her bedroom wall into another dimension. The increasingly desperate parents keep calling out her name, and while they can hear her answer, they can’t see her. They can’t touch her. They can’t help her.