Aviva - Toronto
Marginal zone lymphoma

Aviva Rubin

Marginal zone lymphoma

Toronto ON

Aviva Rubin is a Toronto-based freelance writer of essay, memoir, social commentary and fiction. She was diagnosed with marginal zone lymphoma in 2016 and treated at the Odette Cancer Centre at Sunnybrook Health Sciences Centre, where she continues to be monitored every six months. Aviva has been a member of the Patient and Family Advisory Council (PFAC) at Odette for four years. She believes that patient and caregiver voices are critical to building the multitude of psycho-social supports that take us through and beyond cancer treatment and that patient perspectives will ensure a broad understanding of how cancer leaves those it touches forever changed.

"I crash-landed in what I call Lymphomaland  just over six years ago with marginal zone lymphoma – it’s small cell which is good because it’s more chronic than deadly, but it can’t be cured. It’ll be back. Sometimes when I say that, people tell me I have a bad attitude, that I should be more positive. Will being more positive keep it at bay? 

I get to call myself a survivor. I didn’t do anything to earn the title except make it this far. And it’s not because I’m strong or brave. It irritates me when people say that mental or physical strength is key to surviving.  

Surviving isn’t a question of muscle mass or positive outlook. Not that those things don’t help. They can make the day-to-day less icky. But you don’t die of cancer because you’re cranky. You don’t survive because you’re upbeat or great at pushups.  

The news of remission did come with a flood of gratitude and appreciation for life but it didn’t last long. It’s curious that if we went to hell and back with cancer we’re expected to feel more grateful than the average human. 

Some of us get mostly back to our “old” lives. Some of us don’t. Even if we’re told we’re cured or in remission, we all move forward with some leftovers like chemo brain, peripheral neuropathy, no boobs, financial pressures, resentful kids, fear of recurrence, sexual dysfunction, return to work anxiety.  

From the outside, I look like my normal self but inside I’m always on guard. Is that twinge in my lower abdomen ovarian cancer? Is that ache in my breast, breast cancer? that pain under my eyebrows, a new lymphoma tumour?  Are these reasonable fears?  Cancer spits on reason. And anyway, me and reason, we’ve never been that tight.  

When I’m not reacting to cancer’s provocations, I’m trying to sort out life’s big questions about balance, happiness, calm, fun, health, love. In the meantime, the little questions, like where are all my tax receipts, go unanswered.  

I took a mindful meditation course, made a commitment, worked up to twenty-five minutes a day and thought I’d never stop. Until I did. Now getting it back on my schedule seems near impossible. I know it’s a good thing to do, although often when people say you should meditate and be more positive, what they actually mean is please don’t talk about that icky stuff so much. And sometimes we really need to.  

Cancer may have taken away some of the control I had over my life, but mostly it peed on my illusion that I had much control in the first place. That any of us do. All we can control is our actions and reactions, not what befalls us. I was healthy, ate well and exercised, but cancer happened. It happens all the time. It intimidates and tells me where to go. Occasionally I need to do the same back. Listen Cancer you big bully, you don’t get to ruin everything. That’s a start at control. 

I lost and found many things throughout this trip. Some things are on both the lost and found lists. I lost weight. I found weight. Lost hope, found hope. I found fear, then I lost it, then I found it again, then it hid under the couch and jumped out at me. I found patience, then I lost it. I lost vanity…just kidding, I never lost that. But I did lose three pairs of Ray Ban sunglasses.  I found many cancer pals and dear friends who understand what I’ve been through and can laugh at the things other people think are really not funny. I guess it’s one of those You had to be there situations. 

The other thing I found, or maybe it found me, was an ability to be there for others through the really hard parts, without letting my own fears shut me down. I learned how to listen to a friend or a near stranger say, I don’t know if I can do this anymore, without responding, Of course you can, you’re strong, don’t ever say that. I consider this newfound skill to be a gift.  

Time heals. Not everything. Not cancer, but the sense of isolation and unfamiliarity that came along with it. It’s easier now, even if the mention of the disease (and wow does it ever get mentioned a lot) people getting it, dying of it, running races for it, wearing ribbons, buying lottery tickets so they can maybe win a free house for it, those things are still a personal affront. It doesn’t matter what kind of cancer, or who gets it, it’s always a little about me.  

There’s no right way to do cancer or its aftermath, what gets called survivorship. I chose to lean in, I wrote and talked a lot about my experience, got involved on a patient committee, made a lot of friends with many different kinds of cancer. Some, like my dear friend Ben who died just over four years ago of colon cancer had no interest in talking about what was happening cancer-wise, or very rarely, mostly because he couldn’t deal with people’s awkward sympathy and suggestions. He kept on with his PhD, his teaching gig and his business. Whatever works for you. 

Cancer taught me there’s no such thing as certainty. But one thing is certain – I can’t ever not have had cancer again. So what’s left is making the choice to move forward each day, to forgive my anxieties, to laugh at myself often, to connect with people who understand, to minimize my fears, and to maximize my hopes (again and again)."