What my cousin’s cancer taught me

Originally published in the Montreal Gazette on January 18, 2014.

“I’ve never seen anybody as sick as me,” my cousin Sammy once told me in one of the many hospital waiting rooms we would frequent together over the course of four very short months. “Neither have I,” I told her.

It might sound insensitive, but I promised myself I wouldn’t act like she wasn’t as ill as she was. Not that I went out of my way to remind her, but if she felt like talking about it, I would avoid platitudes. I’d never say things like, “It’ll be OK,” because I didn’t want to tell her things I didn’t know for sure. Besides, she knew first-hand how sick she was. It was condescending to sugar-coat it.

Before all this, Sammy and I weren’t especially close. We come from a large family, we hadn’t spent much time together as children since she lived in Témiscaming and I grew up in Moncton, and there was a nine-year age gap between us. At a family reunion in August 2012, I saw her for the first time in over 10 years and found out she lived in Trois-Rivières, not too far from Montreal. I invited her to call me, but never heard from her.

Exactly one year later, my mother told me Sammy had cancer, and after several phone calls, I found her hospital in Trois-Rivières and went to see her the next day.

Back in April 2013, Sammy learned she suffered from a very aggressive primary mediastinal B-Cell lymphoma (PMBCL), with the mass lodged behind her lungs and heart. She had just returned to school to get her GED and steer her life in a new direction. All that had to stop when she became sick.

By the time I saw her in August, radiotherapy and chemotherapy had already not been working for four months. I instantly decided to be one of the people by her side. I felt compelled to because I could, because I’m a freelance writer with a flexible schedule, and I live nearby.

It was a privilege to be part of her inner circle at a time when she was so vulnerable, but I admittedly got to know Sammy when she wasn’t her usual smiley, high-energy self. What frustrated her most about her condition was the way people, myself included, fidgeted around her. It was a reminder of the independence she’d lost. She missed exceedingly normal things like making herself a salad or tending her garden. When she started to grasp just how bad her disease was, she dreamed small: one more winter was as high as she aimed.

Sammy was only 29 years old, with an 8-year-old son. She couldn’t hold him tightly because the radiation therapy had wasted away her muscles. She once showed me her pendulous calves and swung them from side to side. It’s why she couldn’t walk for very long or go up a few steps without great effort.

Her voice was down to a whisper and consistently phlegmy. She couldn’t carry on conversations without becoming tired, getting short of breath, having a coughing fit, or all three.

When I first saw her like this, I didn’t feel sad or angry: just helpless. There wasn’t anything I could do to make her pain go away, or make her not sick, or make it so she was 92 instead of 29, with a nice long life to look back on. I couldn’t take her mind off cancer because it was in her body all the time.

Healthy people like to offer a lot of unsolicited advice. “She just has to keep a positive attitude, she has to *want* to get better,” they’d tell me. They wouldn’t have said such things if they had spent five minutes in her body. Nobody wanted to live more than Sammy did, but her disease called the shots. Just the same, when she wasn’t smiling, she was busy fighting.

That’s the first thing Sammy taught me about cancer: it’s a full-time job. The bulk of her duties involved indulging her illness’s every whim. Is cancer letting her eat? Is cancer going to make her nauseous? Will she get motion sickness while travelling to the hospital? Is she going to respond well to this latest drug? Did she sleep? Is this one of those days where she can walk? Does she have all the meds she needs? Meantime, the family and friends who could be there would drop everything to help her.

In September, we heard about a treatment that might work but wasn’t covered by Quebec’s health insurance plan, which meant she had to go the private route. At $15,000 per dose, it wasn’t feasible, so I started an Indiegogo fundraiser to buy the treatment. Raising that money became my full-time job.

Cancer was on my agenda every single day: Learning new jargon, speaking to the media about Sammy’s cancer, planning the day based on what the cancer would allow her to do, and making phone calls to update people.

“Tell me honestly, Olivia, is she going to die?” people would ask. And the honest answer was, I didn’t know.

The second thing Sammy taught me is that cancer forces you to conjugate every verb in the conditional. There are so many maybes and so few certainties.

If this expensive treatment works, she might live another few years. If her lymphoma doesn’t come back, she’ll live longer. If all the radiotherapy and chemotherapy don’t have terrible long-term side effects, she might even have a healthy life. If today’s a good day, she might be able to swallow food and pills without choking. If today’s a bad day, we might have to ask a nurse to drop off the meds we need because she won’t be able to leave the house, and we can’t leave her side. If she isn’t too tired, we might take her for a stroll outside. If she feels up to it, we might take visitors today. If she’s not too doped up, we might be able to draft her will.

The word “remission” is used instead of “cure” because being cancer-free is far from a promise — it’s a “for now.” If you’re lucky enough to get to remission, you might utter the word with caution rather than triumph.

Two people with exactly the same kind of cancer can receive the same treatment, and both may have completely different outcomes. If doctors give you five months, you might barely make it past three or plow through two years.

The one certainty is death, and even though it’s a fact that we all die, it’s different facing that inevitability as a very sick person.

The fundraising campaign was a success, but Sammy didn’t respond at all to the treatment. And just like that, every option had been exhausted. For the first time in many months, we knew something for sure.

The third thing I learned from Sammy’s illness was that if there’s one area where religious accommodation is completely reasonable, it’s in helping someone deal with death in the manner they choose. No one else is in a position to even suggest how they process it.

Back in August, Sammy said to me, “I don’t want to die.” A few weeks later, she was baptized in a Catholic Church. She’d always been spiritual; perhaps the baptism was pre-emptive, or maybe it was a ritual that gave her comfort. Truth is, I never asked because it was her business.

After the treatment proved ineffective, Sammy’s condition worsened. On Nov. 1, she was moved to a room in the palliative unit of the Jewish General Hospital. At that point, our full-time job was to keep her company and make sure nurses gave her more meds when she needed them. In the few moments she and I had alone, she often wanted to talk about death.

“Do you believe in an afterlife?” she once asked me.

“No, but that doesn’t mean I’m right,” I said.

She wasn’t letting go of her life, even if it meant prolonging her pain. I tried reassuring her, and told her she didn’t have to hang on, that if she was worried about her family, we’d be sad but we’d be OK. That her son has a wonderful father, and he’s such a healthy, balanced boy, so he’ll be sad but OK too.

She was hanging on because she was afraid to die. “So am I,” I had to admit. My agnostic stance felt clumsy and futile. The hospital’s priest offered prayers rather than counsel.

I struggled with how to adopt a more spiritual vocabulary without saying things I didn’t believe.

I sought help from my friend Omer and from another cousin, Shelly, both of whom are religious scholars. Omer suggested asking Sammy to tell me what she liked about life. “Have her tell you stories. And you have to either record them or write them down,” he suggested. “So, if you had to tell her story for your friend Omer in Chicago, what would she want Omer to know?”

This exercise, Omer said, would give her the impression of persistence and survival. Theologically, he advised, “for her relationship with the one who created her, have her ask him to accept her and forgive her. If you want, add one second thing: ask him to take care of the things she wishes she could take care of, for her.”

Shelly made similar recommendations, and added that I should ask Sammy what it was about death that scared her, because sometimes spelling it out for someone else helps you organize your thoughts around it.

The next time I visited Sammy, I was armed with these tips. It was Nov. 25, just 10 days after her 29th birthday. I had a notepad and pen in tow, ready to talk about death on terms that I hoped would be more suitable for her.

But it was too late. After she nearly suffered a heart attack that afternoon, doctors increased Sammy’s morphine and she was sleeping when I arrived, heaving heavily, looking more like an infant than a young woman. Barely 45 minutes later, she was gone.

It’s a shame I never got to share Omer and Shelly’s wisdom with Sammy, but the importance of the exercise was in trying to understand what she needed, and doing what I could to provide it for her.

Talking about death is never easy, and that applies to all beliefs. Most people are scared of dying. There’s no guarantee that anything I might have said to Sammy would have changed that. Still, in those last moments, I looked for the kind of answers she needed.

She’ll never know that I went to the trouble, but I do, and there’s nothing about this experience that I can un-learn.

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