Growing Up With Cancer

Posted: 09/20/2015 8:33 am EDT - Jacqueline Dooley - Huffington Post - The Blog - See Original Here

"You're obsessed with cancer," my daughter told me the other day. She was annoyed, embarrassed, even hurt. "It's all you think about."

"That's not true," I'd told her. "At least, not the second part." I think about other things--bills, writing books, the untamed jungle of our yard that I need to mow...

But she's right that I'm obsessed with cancer. No matter what else is happening in my life, no matter what I'm thinking about at any given moment, I'm completely obsessed with cancer. Any parent who has heard the words, "your child has cancer" knows what I mean. It is a beast that casts its shadow over everything.

My daughter was diagnosed a few months after her 11th birthday, three years ago in August. I've been obsessed with cancer ever since the white-faced Emergency Room Attending pulled my husband and me aside to tell us they found a tumor on my child's liver--a large one--and that, yes, it was most likely malignant.

Three years is a long time in anyone's life, but in a child's life, it is an eternity. She never attended middle school without feeling like the "cancer kid." At 14 years old, she barely remembers a time in her life before she was sick. Cancer has woven itself into my daughter's childhood with ruthless persistence. It dominates her memories--as vivid as Halloween costumes and Christmas mornings. Days in the hospital, long months of recovery from surgery, the time all her hair fell out as I brushed and brushed, trying to untangle it--a pile on her bed beside her stuffed animals and pink throw pillows.

So, yeah, I'm obsessed. I've spent hours on the phone talking to doctors, insurance companies and other parents. I've read countless web pages about treatments and procedures that may or may not be the key to stopping the slow progression of tumors that even now invade my beautiful daughter's lungs.

I am not present with you, my fellow parents. I'm unable to focus on the same issues that consume you--helicopter parenting, high fructose corn syrup, common core testing, too much screen time and wondering if she is too coddled, too used to getting a participation ribbon instead of earning a proper trophy.

She can never be too coddled. She can never have too much of what makes her happy. There is no way I can shelter her enough from the real world, not after what she's been through, what she's still going through. She's in pain every single day. I am separate in my obsession. I am focused only on the space in front of her.

There is no use worrying about college prep right now, not when she has another scan coming up in three weeks. They will peer inside her lungs where the dark shadows grow and tell us if the drugs stopped working again, or if she has more time before the next treatment, the next scan, more time be a normal teenage girl. This is what she really wants--more time and normalcy-- things I can't give her.

"How do you do it?" People often ask. "I can't imagine."

What can I say? I have moved through the past three years on pure adrenaline, burning with worry, doing what the doctors tell me to do, clinging to hope.

I don't think I'm doing any of it particularly well. I am obsessed, as my daughter pointed out. I am mentally exhausted. I cry at the smallest provocation. I read about cancer, watch videos, follow the journeys of other children and I ask myself why.

Why? Why my child? Why anyone's child?

I am not okay. It's been three years and counting and a part of me has forgotten how to look forward, how to plan. Each day she is here is a day I desperately don't want to end. It's a twisted way of living in the moment.

Do you want to imagine? I mean, really imagine what it's like?

Imagine you are surrounded by teenagers, healthy and strong. They feel invincible. They think they know everything. The arc of their lives is stretched out in front of them like a dazzling rainbow. They are beautiful--every single one of them. They will go through the rough seas of high school and come out the other end into dewy eyed young adulthood. They will go to college. They will fall in love.

Ten years will tumble forward and they will have grown up. The exact path will be fuzzy. No one can read the future. Nothing is certain. But most of these fumbling, glorious teens will grow up and become.

Now take one of these shining stars and pull her away from the group. She's your child. She is everything. You want her rainbow to glow the brightest, of course, and stretch out the farthest. But you can only see a few feet of that arc and no matter how hard you try, no matter how much you squint and pray and shake your fist, there is nothing beyond those few dazzling feet of color. Nothing but darkness. Nothing but uncertainty.

You would switch places with your child. You would make her darkness your own and give her that arc of certainty, but that's not possible. You can't take the journey with her or for her. You can't make it better. All you can do is acknowledge her pain and sadness and try to hold onto hope.

The days can be like this. The weeks can be like this. It is difficult, after all this time, to stay positive and present in the world.

So yes, I'm obsessed. She's absolutely right. She speaks truth as only a teenager can. I am ashamed that I'm not stronger, not eternally optimistic. That's what it's like having a child with cancer. It's being lost in the woods. It's wandering a lightless tunnel. It's carrying a heaviness with you wherever you go, whoever you're with, and whatever you do.