Andrea Cope

The phrase "But what about Rosie" helped Cope and her husband remember happier times as he experienced cancer. 

At the grocery store last week, I overheard a dad talking on the phone as we stood together in line. “Ma’am. Ma’am. You can’t be mad at him for yelling at the teacher. That’s just how he shows love.”

There’s a weird thing that happens when kids start hanging out with other adults. For both of mine, it hit hard in kindergarten. Our sweet, moderately obedient, generally reasonable children became crying, defiant strangers the minute they took their backpacks off at the end of the day. After six hours of following directions and taking turns and sitting quietly at circle time, they barely made it through the door some days. They saved their meltdowns for us because they trusted us to love them no matter what.

When you’re sick and unsure of how your future will play out — or cease to be — anger is a constant undertone. Never once did I hear Thom say he was angry about having cancer. Never did the “why me” shtick. Not one word about it in his journal. Instead, he was angry with me. And trying desperately not to be.

His glass of orange juice was too full. Or too empty. His water flask was too heavy, his plate too large, his towel too soft or too rough. Every food I tried to tempt him with was wrong. It tasted awful. It was too cold. It was too hot. It was too crunchy. The tape on his bandages were too short, except when it was too long. If I didn’t choose the same route, he would have driven to the few places we were still going to, even if I took the route he’d wanted the week before, he was frustrated and disappointed. In me.

No matter how many times I tried, I couldn’t recreate his mother’s molasses cookies — the one thing he wanted more than anything — knowing all the while that even had she dropped down from heaven and made them herself, they wouldn’t be able to overcome his ravaged taste buds. He couldn’t drive or carry a laundry basket or bend to pick up what he’d dropped, things I did easily and with renewed gratitude. He was dependent in a way he hadn’t been since he was a child and he hated it. I was healthy and strong and independent, no different than I’d been on the day before we knew. I think he hated that, too.

That wasn’t how I wanted to remember him.

In the limbo we lived in between stopping treatment and accepting hospice, we transferred to palliative care. It was a delay tactic and all of us knew it. At our first meeting, they ran through the services we were entitled to. MD Anderson has a team of counselors and social workers who know more about life in limbo than most of us will ever want to. Thom asked for an appointment. The team manager opened the door and asked a counselor to come in.

My instinct was to leave the room so that Thom could open up without worrying about how I would feel. It upset him when I cried. He insisted that I stay. We sat in separated chairs, each wrapped in guilt, regret and longing.

He told the counselor that his biggest worry was the effect his behavior was having on me. He asked for help, maybe for the first time in his life. He talked, I cried, my eyes just barely visible above the mask we all wore in those days. We had both come to terms with the reality of our situation, we’d certainly had the time and the knowledge to do so. We were living our lives for the memories by then and we wanted them to be untainted by anger or resentment.

The counselor kindly assured us it was all a normal response to circumstances. He suggested that we agree on a phrase that might cause us both to stop and smile when frustration was rising, a subtle way to remind us of the happy times we so desperately wanted to keep at the forefront.

Our daughter’s third child, Rosie, was just beginning to speak. We’d worried about her, being number three, each sibling two years apart, growing from baby to toddler in the midst of a pandemic, number four already waiting to be born. One morning, we were all together in our backyard. I leaned down to tell her older sister that I liked her shoes. From above, perched in her daddy’s arms, we heard a tiny little voice ask, “But what about Rosie?”

And that was our phrase, for as long as it worked. Eventually, nothing did. But by then I’d separated the present from the past. With each day, the Thom I loved was melting away, faster and faster. The tumor was a relentless bully, and it was winning, but I wouldn’t let it steal my memories. And sometimes still, on my saddest of days, I ask myself, “But what about Rosie?”

This post was written and submitted by Andrea Cope The article reflects the views of Cope and not of CURE®. This is also not supposed to be intended as medical advice.

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