How I Became a Cancer Mom
Nothing can prepare a mother for her child's cancer diagnosis. But connecting with other Cancer Moms made this mother feel less alone and ready for the fight.
Tomorrow, I become her again. Cancer Mom. Or just Mom. "Everything okay in here, Mom?" the nurses ask. "I don't know, is it?" I laugh, reaching for the pink puke bucket. The nurses know my name, and they're used to my jokes. But when my six-year-old son, Lou and I check-in for more treatment, I leave my name at the door.
I became a Cancer Mom days before Lou and his identical twin brother, West, turned one year old. Lou had been on a steady decline. He'd stopped nursing, eating, and eventually sleeping, whereas West was fine. Unable to sleep myself, I'd stare at Lou, our eyes locked in the dark, as though waiting for a bomb to go off.
Finally, I made an emergency appointment with a new pediatrician. I also agreed to play a show. "Tonight?" my husband, Ian, had asked. Yes, it was an act of madness. I'd felt a desperate, irrational need to be my old self—a singer-songwriter—even for two hours, to escape what I knew was an oncoming disaster. Strapping Lou to my chest, I left my guitar and a sparkling dress that probably didn't fit me anymore by the door.
What happened next comes back to me like pages in a flipbook. I stood on the corner, my nose in Lou's sweaty hair. I was to meet the pediatrician in the ER, but I couldn't move my feet. I knew the minute I took a step forward my life would be divided into Before the Walk and After the Walk. I thought of my guitar and sparkling dress. I wanted to run backward. Somehow, I walked up the block.
The neurosurgeon looked like a young George Clooney. It felt like I was in an old episode of ER. We're sorry, Mom, but your baby has a hemorrhaging brain tumor the size of your clenched fist. I wanted to punch George Clooney! But this was real life. I handed Lou over, not knowing if I'd get him back.
Lou was diagnosed with choroid plexus carcinoma, an extremely rare form of pediatric brain cancer. Until Lou's diagnosis, I had known nothing about cancer, having only been around it peripherally. I'd liked pictures of other mothers and their sick children on Facebook, adding my own x's and o's after #hashtags like LittleWarrior and MamaStrong. But now my baby was the warrior, and I was definitely not Mama Strong. I felt like hashtag Get Me Out of Here.
I had no idea how to be a Cancer Mom. The social worker gave me a book called When Your Child is Very Ill but it didn't tell me how not to cry when the nurses accessed Lou's port, or what to do when kissing Lou's head left me with a mouthful of hair. Nor did it un-convince me that Lou's cancer was my fault. Karmic payback, something I ate, the sparkling dress, my guitar by the door…
One morning, after yet another sleepless night, I'd broken down at the coffee cart. "I can't do this!" I'd cried to another mother. "What, pour coffee?" she laughed. "No, be a Cancer Mom!" But soon I was laughing, too.
Maria changed everything. She was also a twin mom, switching off nights with her husband, trying to give her son Matthew at home as much love as Mikey in the hospital. (And she, too, used her copy of When Your Child is Very Ill as a doorstop.) The nurses said we looked like sisters. And we were. Our lives had been divided into Before the Walk and After the Walk.
When Maria and Mikey were discharged, she gave me a small amethyst stone. It was a rough cut, with sharp edges. "Hold it when you're scared," she'd said, and I did. In her absence, bearing witness to Lou's suffering, I'd clench the crystal so tightly it cut through my blue rubber gloves.
I held on to Maria's stone for the four years Lou was in remission. I tried to pass as a normal mom, albeit one with a crystal in her pocket. But often, my time in the hospital would creep up on me. Like in the grocery store when a baby wouldn't stop crying. My heart would beat so fast I'd leave my cart and run for the door. I always called Maria.
But this spring, when George Clooney confirmed that Lou had relapsed, I didn't call Maria. I kept putting it off. Telling Maria meant that this was really happening, that I was Cancer Mom again.
I thought cancer would be easier the second time around. "We've got this," Ian and I kept saying, despite our terror. I'd been "her" before, I could be "her" again. But it was much more complex seeing a six-year-old through surgery and chemo than it was a baby. Lou and West were used to normal life; we all were. And it had just been taken away from us. I felt like I was on the street corner again, unable to move.
Back in the hospital, the old loneliness sunk in. "How are you doing, Mom?" the nurses would ask. "Oh, you know, just talking to my crystal!" I'd joke, but truly I needed a friend.
There was the mom who'd been wearing the same AC/DC pajamas for days. When I passed by in my sundress and lipstick, she looked like she wanted to kill me, everyone really. I got it, she was still in the angry phase. Then there was the older mom in the high tech running clothes. I'd complimented her sneakers. "I have to be ready, at a moment's notice, to run," she'd said. Her panicked eyes told me she was grappling, as I had, with hashtag Get Me Out of Here.
Then one night, a new family was admitted. The mother was curled up in the hall window, crying. I saw that she was using a new edition of When Your Child Is Very Ill to prop up her laptop. She was frantically Googling, looking, she told me, for everything she could find about her child's new diagnoses. I knew that what she really wanted to find was proof that it was going to be okay. I also knew I was witnessing someone else becoming a Cancer Mom.
"I'm Alexa," I said.
"I'm…" she stopped. "Oh my God!" she laughed, "I'm Michelle. I seriously forgot my name for a second!"
I listened to her. How she had been on route to Chicago for a conference when the call came. How she can't forgive the part of her that wanted to stay in Chicago. I held her hand. I told her about my guitar and the sparkling dress by the door. "It's not your fault," I said.
I was looking forward to seeing her the next morning, but the nurses said she and her son had been transferred in the night. My heart sunk. I had wanted to give her Maria's rock, a passing of the torch.
"I'll watch, Lou," a nurse said, seeing the tears in my eyes. "Go do something nice for yourself, Mom." So, I stepped outside. I stood on the corner, the familiar feeling of not knowing where to go. The deli? Trader Joe's?
I held the rock in my hand, and then I called Maria.
Alexa Wilding is a writer, singer-songwriter, and twin mama.