When Cancer Becomes Terminal, The Meaning of Hope Changes

daughter lived with cancer for over four years. Diagnosed at 11, she weathered the storm of puberty and her changing body under the oppression of her illness. In April of 2016, she had a very bad scan.

She learned that her cancer was growing, with new tumors appearing in her abdomen, pelvis, bowel and lungs.

Ana had anticipated the news even before we got the results. She’d said, “It’s going to be bad, Mom.” She was fourteen years old at the time.

I don’t know if this was some kind of sixth sense she developed from the many years of being acutely aware of her own body or if she was just able to face the reality of her disease far more honestly than I was. Either way, it broke my heart.

When I’d tried to encourage her to think positively, she’d shaken her head. That day, she didn’t put her earbuds in when her oncologist discussed the results of her scan. She’d listened in silence as the doctor explained the seriousness of her cancer progression. Then, after years of letting my husband and I do all the talking, she’d asked the first question.

“How am I going to die?”

The pediatric oncologist had looked at my child and explained a few of the ways people die from uncontrolled metastatic cancer.

“Will it hurt? I don’t want it to hurt.”

He’d told her they would give her medication to keep her as comfortable as possible. Then he suggested we reach out to the palliative care team. It was the moment I’d been dreading since the first day of her diagnosis. All I could do was sit in the exam room and cry.

There are stages of hope just like there are stages of grief. Here are some ways that the meaning of hope changed for my family during Ana’s nearly five-year battle with cancer.

You’ll beat this.

This is the “get to higher ground” stage. It sweeps you up and breathes new air into your lungs after the initial shock and horror of a cancer diagnosis has knocked the wind out of them. It’s the rallying cry of those who have yet to understand the full limitations of modern medicine and what “not enough funding for research” truly means.

Some straws are short — some are miniscule. Ana drew the tiniest of straws. She had the misfortune of being diagnosed with Inflammatory Myofibroblastic Tumor (IMT), a type of tumor that wasn’t technically considered malignant, though hers was a unique presentation that her oncologist had dubbed a “slow growing malignancy.” There was very little information about this tumor at the time of Ana’s diagnosis. Any information about treatment or prognosis focused on a handful of cases (and case studies) in medical literature.

Her doctors originally told us that a liver transplant would cure her because it would remove her tumor and it would never come back, it would never spread. They were positive that she would survive, so we had sadness and pain, but we also had unwavering hope.

You’re incredibly strong.

Ana had her liver transplant and begin to recover. Then, a scan revealed that her cancer had returned.

With this heartbreaking revelation, we entered the “what doesn’t kill you makes you stronger” stage. We entered this stage via an ice cold wake-up call of an MRI that Ana got seven months after she was declared cancer free. The MRI revealed new tumors near her transplanted liver. It also revealed metastatic disease in both her lungs.

The language of hope was nearly the same, though our faith in modern medicine wasn’t quite as unshakeable. After more surgery (the treatment of choice for IMT) and radiation, modern medicine once again came through for us. Genomic sequencing of Ana’s tumor uncovered a miracle drug that targeted one of the genes involved in her cancer. It slowed her disease to a crawl (without hair loss).

I don’t know how you do it.

This is the “long haul” stage. After another year of relative stability, the miracle drug stopped working and Ana’s cancer progression sped up. It was subtle at first. Some of her lung tumors began to grow again after being stable for months. There was a foreshadowing of what was to come when a large new tumor blossomed in her pelvis six weeks after a relatively clear scan in that area.

It was removed via surgery, of course, and she started 8th grade four days later as if nothing had happened. We still had hope — real hope that she would beat cancer or be able to live with it for years until a true miracle was discovered. We began calling it a chronic disease and clinging to stage one. She was going to beat this!

Have courage.

This is the “be positive” stage. After a year of stability, Ana turned 14, graduated from middle school and began high school on a new oral chemotherapy drug that made her tired and a bit too thin. In retrospect, the signs that her body was weakening had become apparent as early as September of that year, but she rallied. She looked wonderful. She seemed strong.

On November 25th, 2015 (the day after Thanksgiving), Ana stood up from the couch where she’d been watching TV with her sister and screamed in pain. What followed was a trip to our local emergency room, another CT scan, and the devastating news that her pelvis, which had been completely tumor free just six weeks earlier, was full of new tumors.

Hope faltered. People told us to stay strong, stay positive. One of her surgeons admitted that he felt more surgery was futile, that it would cause potential complications without any clear benefit. But we forged ahead with yet another surgery because the alternative — stopping treatment — was unthinkable.

The tumors in Ana’s abdomen were successfully removed by the same surgeon who had performed her liver transplant four years earlier. She recovered from that surgery in January of 2016 and had three weeks of radiation to treat two persistent lung tumors. By March, she’d begun to gain weight again and fall into the rhythm of daily life.

Hope meets despair.

I don’t have a label for the final stage of hope because it’s not any kind of hope I’ve ever experienced before. It was a hope that lived in the shadow of despair.

A friend and fellow bereaved parent once told me that, after weeks of watching her son slowly fade away, she found it excruciating to hold both the emotions of hope and despair together.

A scan in April 2016 revealed that Ana’s abdomen, pelvis and bowels were once again full of tumors. The cancer was gaining traction in her body. Hope seemed like a fading memory — just like life before cancer.

My child was such a big part of my life that the thought of losing her made me feel like I was unraveling. That’s when I found myself hoping for things that were previously unthinkable. I hoped that she wouldn’t suffer. I hoped that the world would know about her. I hoped that I wouldn’t disintegrate from the inside out as I tried to remain strong.

In the end, I hoped for a good and painless death for Ana. She’d been so scared of the pain and indignity of dying. She’d dreaded the thought of me sobbing and standing over her as she died. I made it my mission to stay strong for her, to help her transition from life to death without making it about me and my loss. I forced myself to remain calm and present so that she wouldn’t feel scared and alone.

I was by her side as she died, telling her I loved her. My voice was strong. My eyes were dry. When I told her it was okay to go, she looked at me one last time, sighed and closed her eyes. She died with dignity and a minimal amount of pain. In the end, that’s all I could’ve hoped for.

A version of this essay was published in Huffpost.com.

Occasional poet. Writer of sad essays. Novelist. Birder and amateur photographer. I enjoy trees.

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