Home Culture Books & Authors An author’s trip ‘from diagnosis to survivorship’

An author’s trip ‘from diagnosis to survivorship’

'Lost and Found in Lymphomaland' by Aviva Rubin
'Lost and Found in Lymphomaland' by Aviva Rubin

In 2013, Aviva Rubin’s greatest fear and her greatest dream both came true.

She was diagnosed with marginal zone lymphoma, and was then asked to write about her experiences in the Globe and Mail. “I’ve always worried about cancer; I’ve always wanted to write for the Globe.”

Now, Rubin, 56, a local freelance writer and blogger who has two sons, has recently completed Lost and Found in Lymphomaland, a memoir about her “trip from diagnosis to survivorship.”

Making people “laugh and cry at the same time”

With a teaching degree and a  master’s degree, Rubin worked in various areas of the Ontario government for more than two decades, including her last stint as a senior health policy analyst at the Ministry of Health.

“I was weirdly over-informed when I got my cancer diagnosis,” she said.

She completed her book about a year after she finished active treatment, although she still receives maintenance chemotherapy, “which is supposed to help stave off the next occurrence. This kind of lymphoma can’t be cured, it can only be treated, so it will be back. No one knows when. Aside from a truckload of fear and anxiety, which now follows me everywhere, I’m feeling pretty well.”

Reaction to her book, Rubin said, has been wonderful and affirming. “It seems I can make people laugh and cry at the same time. A little levity is a good thing when you’re dealing with something as heavy as cancer.”

She didn’t put a lot of thought to writing about cancer, she said. “I just started blogging right away about everything that was happening. I couldn’t help it. It was what I needed to do. All the gory, hard, weird, funny, painful, annoying, boring details. I wanted them out there. A friend suggested I turn it into a book.

“I’m told I capture things that are universal in the experience of cancer – of illness, and of shocking bad things that come along out of nowhere, wreak havoc, and change the course of life forever.”

She said that she is often asked if writing about her experience has been cathartic. “Not really. Nothing about cancer changes because you write about it. I feel hugely grateful for the ability to put the hell of this experience out there, and have people tell me I’ve captured what they’re going through. It’s hard for folks to understand what it feels like. I hope my writing shines a light on that.”

As a patient in Ontario, she said, “I’ve got all sorts of thoughts and comments about improving the health-care system – about administrative mess-ups, errors, misinformation, lack of information between one area and another, waiting and waiting and waiting.

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“But overall, I’ve been impressed and hugely grateful for the medical and emotional treatment I’ve received throughout this ordeal. We are extremely lucky in this country, in this province, in this city. The Odette Cancer Centre at Sunnybrook [Health Sciences Centre] is full of smart, competent, caring and empathetic health-care providers.

“Cancer, however, is a waiting game. It’s pretty relentless. When it’s not scary waiting, it’s boring and tedious waiting. Once you know what you’re dealing with, diagnosis and treatment-wise, it does get somewhat easier. I tried not to start the worry mill spinning until 24 hours before any results appointment. Sometimes that worked. I surrounded myself with people who had deep pockets of support and patience for me.”

Now that active treatment is done, she said, “things feel somewhat normal – a new normal. I’m back to active hands-on-ish parenting [to her 16- and 12-year-old boys], I’m running occasionally, travelling, having conversations that are not about cancer, enjoying myself, making dinner parties and relaxing, although that’s something I’ve never been good at.”

Lymphoma is always in the corner, Rubin said. “Sometimes I can shove it in the basement of my mind and not look at it, kick it back down the steps when it sneaks up. Me and lymphoma, we’re in it for life. Finding a way to coexist and respect each other’s space is now my greatest challenge.”