The Hardest Conversation

02/05/2013 10:49 am ET | Updated Apr 07, 2013

From the time my oldest child Paige was born everyone kept telling me, "Just you wait."

When she made it through the terrible twos without much of a tantrum.

When she made it through elementary school and a move from NYC without trouble.

"Just you wait," they said, "girls are drama. You got lucky before. But the teen years? Oh boy... just you wait."

Today she prepared me a bowl of soup and brought it up to my bedroom. I was resting after my surgery yesterday, the room was dark. I invited her to come snuggle with me in the big bed. We've never let our children sleep in our bed so they think climbing in is a big treat. I asked her if she wanted to talk about what was going on, about my news about having metastatic breast cancer. She did.

And so it began: an hour-long talk that started with her first question, "Are you scared?"

She asked questions about genetics and risks of getting cancer to what kind of treatments I might need. She asked me again, as if to confirm for herself, "It's not curable, right?"

We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.

I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it's normal. That sometimes that fear makes you brave enough to do things you don't think you can otherwise do.

I told her that I understood that sickness could be scary, that I didn't want her to be afraid of me as I got sicker someday. "I would never be afraid of you, Mom. I'm only afraid of cancer," she said. My heart squeezed and thrashed and the tears flowed.

We talked about her desire to be a doctor, a surgeon. She wanted to know what all of my surgeries and treatments had done. She wanted to know the difference between cancer "stage" and "grade." We talked about the genetics of breast cancer and discussed the BRCA-1 and 2 genes (which I do not have). We talked about hormones and their role in puberty, menopause, and cancer. She wanted to know why outcomes are so variable. How will we know if treatments are working? I told her about the importance of her monitoring her own health, how hopefully we will have better screenings down the road but that it's important for her to be vigilant.

I told her that for now I want her to live her life, that I want our house to be as normal as it can be for as long as it can be. I told her she should try to focus on her schoolwork, her sports, and her friends. She told me that I was more important.

I told her that eventually I might need someone to help take care of me. "I will take care of you, Mom. You've always taken care of us," she said.

We talked about her brothers, ages 11 and 6 and how she was going to have to help them. And her dad too. "I'm really good with hospitals and medical things, Mom... I'm just like you."

She said she liked that I was open about it. That people knew. She thought it was best to be honest and appreciated the offers of support she'd received from friends and adults she knows.

I told her that what we were doing, lying there talking for an hour together about this, was the most important thing we could be doing today. I told her there wasn't anything more important to me than my family. My job is to help them deal with this. Whatever this is. And that what she needed from me would likely differ from what her brothers need; she is older and each of them would have different needs along the way. It's my job to figure that out and address it. For my husband, too. How I take the lead on this will be important.

She asked if that was a lot of pressure, to have so many people reading my words, watching what I was doing. I told her it was. I told her it was my way of trying to help people. The same way that she wants to be a doctor to help others... well, I have always tried to see if I could help in my own way here on this site. And the way we talked before about the unknown being what's scary? Well, my writing here means it's less mysterious. Knowledge helps. Even if the knowledge is not what you want to hear, knowing is better. Denial won't change the course of things, and often makes things worse.

Secrecy is bad. Sharing and supporting are what I champion. And I know that de-mystification is a constant effort. I will continue to teach my children daily. I said I hoped that somewhere in all of this she could see how important science and medicine are in my world. And that if she does decide to be a doctor that is a noble effort. She will make me proud in whatever she does. As will my boys.

The funny thing is how much better I felt after we talked. The conversation was the hardest one I've had. The topics are gut-wrenching. But shining the light on them, on this disease, on what happens next, is the only way I know to cope, to help, to keep going.

We talked on and on as I combed my fingers through her long hair. I stroked her smooth, soft cheek. She was giving me strength.

And what I realize about people saying I should just wait because she's going to eventually act out:

Waiting is a luxury. Waiting means having time. And that's what I want most in this world right now.