Hope Hurts

My wife, Jo, had a cancer no research hospital could identify. “Only two percent of cancers are of unknown primary origins,” Dr. Rita, her oncologist, informed us.

“Christ. I knew being an overachiever would kill me,” Jo replied dryly.

I was stupefied. How could it be that there were telescopes that could see galaxies light years away and electron microscopes that could reveal the invisible building blocks of life, but there was no lens that could identify this cancer? Without knowing the kind of cell that had mutated, it was impossible to select an appropriate drug to combat it. Jo’s prognosis, in the absence of a known cancer type, would be three to four months.  

After a few moments, Dr. Rita asked Jo, “What do you want to do with the time you have left?” 

Without hesitation, Jo replied, “Go home. Live my life until I can’t anymore.”

“Really?” I asked. “What about that road trip to the Grand Canyon we’ve been talking about? Or maybe Hawaii, again?”

“Sounds exhausting,” she said. “I just want to go home. I love our life.”

Of course, she wanted to go home. It was peaceful there. Peach dahlias popped up over the front fence. Jasmine rambled over the arched entry, the scent pulling you in to be greeted by two plump hydrangea bushes. We enjoyed creating a cheerful home for our family of two humans, one ill-mannered rescue dog, and two adopted dwarf hamsters.  

Our relationship, like the 1932 cottage we called home, was built out of old growth redwood. We were sturdy and resilient yet suited to survive in only one unique environment.  We enveloped each other in a nurturing mist and rooted the other’s ambitions in a nourishing soil.  Laughter kept us resistant to resentments. We thrived in our ecosystem on F Street.    

But when Jo said she wanted to go home, my first thought was how much work it would be.  Responsibility would land on my shoulders like a yoke on an ox. Cooking, cleaning, groceries, medication, appointments, errands, our business. The to-do list was daunting. 

I wanted to run away with her, to a place where someone else would care for us; leaving me every minute to be with her curled up on a sofa reading a Walt Longmire mystery to each other, foraging for wild berries as we ambled along a mountain trail, or hanging in a hammock rehashing the last several weeks trying to make sense of our inconceivable fate. But no one asked me what I wanted to do with the time I had left with my wife.  

“OK,” Dr. Rita’s voice brought me back into the room. “Understanding what you want helps me know what treatment strategies to recommend.”  

“Treatment strategies? I thought this was an untreatable cancer?” Hope surged into my veins.

Even though it was an untreatable cancer, there was one option we could try; a chemotherapy that was effective on other fast-growing cancers. Because Jo was young, strong, and healthy, other than the mutant cells running rampant in her lymph system, she might be able to tolerate such an aggressive approach.  

This cocktail could compromise her organs, making her last months’ much more onerous, therefore, it had to be administered at Stanford Hospital, over the course of three days, under close medical supervision. But it could buy Jo a little more time.  

“How much time?” I asked eagerly. 

“A little; definitely not a lot,” Dr. Rita stated plainly.  

 “What about all those people you hear about who get a terminal diagnosis and are still around five years later? Couldn’t Jo be one of those people?” I persisted. 

“Those people do not have this cancer,” Dr. Rita stated unequivocally.

Jo rested her hand on my lap, a well-established cue for me to let the conversation move on.

“OK, no chemo,” Dr. Rita continued, she touched Jo’s arm and added, “I think that’s a good decision.”  

That night, when we were both snuggled up in her hospital bed, Jo said, “Person, your hopefulness is too much pressure. I can’t outwit an aggressive cancer no one has ever heard of.” 

Her words landed on my heart with a thud.

“I feel like a failure for not choosing chemo,” she continued. “The words cancer and fight always seem to go together but fighting feels like a horrible way to spend my time.”

Hope hurts. 

The thought popped up like an angry blister on my conscience.  

My unrelenting hope was crushing my wife.

Jo had accepted that she was dying and wanted to go home and get on with living.

Lying there in the dark, I took “a hit of oxy” (tocin). That was what we called the rush of love that flooded our brains when we were reminded of how fabulous the person we loved truly was.    

“I am grateful you are OK with no chemo,” she whispered.

“I am grateful you are patient with my hopefulness,” I replied.  

“I am grateful you are working to holster that hopefulness,” she shot back.

We were jostled awake early the next morning. Even though she hoarded the blankets and I flopped around too much, nestled next to each other was the most comfortable way to spend the night. The recliner the nurses had wheeled in for me sat vacant. As we worked our way out of the groggy fog, a wiry man stood at my side of the bed.

“I’m Dr. Oscar, the head of oncology. I’m doing rounds for Dr. Rita, it’s her day off.” He took a seat on the arm of the empty recliner.  

We sat up. I wiped the sleep from the corner of my eyes and fumbled for my glasses on the side table.

“So, how are you feeling?” Dr. Oscar questioned, kindly touching my hand that was now on the side rail of the bed. 

“I am doing OK.” I replied still not completely alert. He was the first doctor to ask how I was doing. It felt odd and really nice.

“So, you’ve decided not to do chemo?” he said looking directly at me.

It was like a bucket of cold water to the face. I scrambled to pull my words together. “Well. I mean. It’s not just me.” I stammered. “I am just trying to be supportive. Ultimately, it really is up to Jo.” 

Jo, understanding what was happening, jumped in. “I’m the one with cancer,” she volunteered. And then, to diffuse the embarrassment that instantly registered on Dr. Oscar’s face, she added, “This is just what she normally looks like in the morning.”

We all chuckled.  

Jo continued, “I’ve only got a few months. I don’t want to spend them in the hospital. I am wasting time I don’t have.”

Dr. Oscar was direct. “I think no chemo is a mistake.”

We were taken aback.  

He proceeded, “Because this is an unknown cancer, we don’t know how it would react to chemo. The effect could be positive. Even a small response might be enough to extend your life, or at minimum, keep it from taking over your major organs for a bit longer, extending the quality of your life. Of course, no one can know for certain.”

We stared back at him.

After a few moments I said, “We knew chemo could jeopardize Jo’s organs, but you are saying that cancer will compromise them anyway?”

“Yes. It will. It is already in her lungs and on her spine. It will continue to grow. I think it is a mistake not to do at least one round. You are already here. We can start chemo while we try to find an effective pain management regimen. It would make good use of your time.” 

I could see the neurons firing in Jo’s brain as she considered this reasoned opposing view.

I stayed silent. I knew she would speak up and stand her ground. And if she didn’t, I knew she was giving me space to do what she knew I would do. 

She didn’t say anything, so I did. “You are healthy right now. If we are going to try it, we should do it while you are still strong.”

“It makes sense,” Jo said evenly.

“You’re sure?” I asked.

“Yep. May as well,” she replied.

Dr. Oscar said he’d make arrangements to start chemo the next day.

I tried to holster it, but hope suffused my being. 

Heavy curtains hung across the only window. The furnishings were utilitarian, meant to be laden with baggage. The bedding, stiff. The pillows, rigid. I was angry that we were in a cheap hotel.

Jo was standing at the sink, brushing her teeth, fully dressed, ready for the call. One bony arm was planted on the countertop; she needed this kickstand to hold her weight.  She wore a knit cap to keep her bald head warm; it was late July. Her clothes hung off her body “like socks on a rooster,” her favorite quip when I used to wear her sweatshirts. I tried to look busy, but really, I was keeping an eye on her.

The car ride that brought us here should have taken six hours, but instead it had taken us two days. We had to stop at the half-way point so she could rest her back for the night. And still, when we finally arrived in this ugly place, I had suggested a sit-down meal out. 

I needed to get away from this disagreeable room. I wanted time with her, the way things used to be: a nice meal after a long trip. A beer for her, an iced tea for me, someone waiting on both of us.  

She had tried, like she always did, even riddled with cancer, to give me what I wanted. But sitting in the crowded Chinese restaurant was too much. The upright chairs further inflamed her already angry spine. We had left without ordering. 

Now, back in the repellant room, brushing her teeth was taking more endurance than it should have. She switched arms. 

Three months into a hostile cancer with no cure, she was still trying to give me what I needed.

I am a tumor; always pressing, sucking, clinging.

“Did we bring dental floss?” her voice pulled me back.

I rummaged around for it, relieved to have a task.

Standing at the sink while I tried to find the floss was too much for her legs. They were trembling. I helped her onto the bed. It did not give under her weight. 

I stepped out. To find “us” dinner. I knew she would not eat anything I brought back. For the past few days, she’d been unable to keep much down.  

“I have the phone. If they call, I’ll come right back,” I reassured.

Alone in the car, I sat in the quiet. The heat from the cab soaked in and opened my mind. I didn’t know what had happened to my wife, but I knew it had happened quickly. 

“Why are you leaving?” A quiet, confident voice pierced through the confusion in my head.

I walked back into the room. 

She was curled up on the bed, her knees and arms clung to a pillow that was as stiff as a sack of flour.  

Why is this room so goddamned uncomfortable!

Only one side of her mouth had the energy to greet me with a slight upturn, the size of a comma.

I took off my shoes and climbed into bed. Leaned against the headboard, I wanted to ask, “What is happening?” 

I remained silent. 

She closed her eyes.

Her brow furrowed.  

Pain had her in a vice grip.

I didn’t know what to do. 

“Have they called?” her voice, barely audible, jolted me.

Even though I had the ringer set on high, I checked the phone. There was no call from the oncology unit. We had been waiting all afternoon to be told a hospital bed was ready for her fourth round of chemo.

“I can take you to the ER?” My solution came out like a question.

Her eyes were wedged shut, but a tear squeezed out, clung for a moment to the few lashes she had left, and tumbled onto the pillow.

I sat, watching her. Unable to ease her suffering, I watched.

She asked, “Is it OK if we don’t do chemo anymore?”

Her eyes opened to see my reaction.

All they saw was me searching for the answer.

“I am sorry,” her eyes told me. 

“I can’t bear to disappoint you,” they apologized.

“I need your permission,” they implored.

I knew this day would come. I thought it would be a doctor telling us it was time. 

You are the only person I have ever trusted.

Until this moment, I never knew this was true.

She unfurled her gangly arms and legs, pushed away the pillow and motioned me into that space that held pain.

I laid my head on her chest, but I didn’t let the full weight of it go, afraid it would crack the bone that protected her heart.   

“Of course,” I said. “No more chemo, Person.”  

Tension seeped out of her body.

I shifted and pulled her into the crook of my arm.  

I cradled her head.

Kissed her forehead.

Pressed my cheek against her fuzzy cap.  

The voice was back, but this time it came out of my head and took shape in this unforgiving room, “We will be OK. No matter what happens; we will be OK. Because even apart, we are always together.” 

Her sharp angles sank into my resilient flesh.  

“Thank you,” she said. 

My tears landed on her wet cheek.  

Thank you?

Emily Weber

Emily Weber is a writer, observing and documenting the effects of love and loss on the ecology of her internal landscape. She turned to writing as a salve for grief after the death of her wife. She lives in Humboldt County with her new love and draws inspiration from the resilience of the meadow outside her window. She won second place in the Write On the Sound Annual Writers’ Conference 2021 contest in the non-fiction category.