When you get through cancer treatment, is it time to take your “clean-bill-of-health-for-now card” and bolt…or something else? Aviva Rubin chose something else. Her beautifully written and intensely personal exploration of what being a “survivor” means to her exemplifies the Patients’ View Principle of Empowerment.
In the fall of 2013, I was diagnosed with Marginal Zone Lymphoma – an incurable but treatable small cell lymphoma that I’m assured will be back. For no good reason, I’d spent my entire adult life terrified about cancer, (not lymphoma -no idea what that was) chasing imaginary tumors around my body. Until I found one.
In Spring of 2014, I finished active treatment and started almost two years of maintenance chemo. That came to an end a few weeks ago. I’m scared to no longer be chemically tethered by an IV needle to the Odette Cancer Center in Toronto– a place I both hugely appreciate, and actively hate. I’m scared about the results of my upcoming MRI and CT scans. But maybe all this will mark the end of a jerky, stop and start, less than productive life. I will officially be labeled a survivor.
Surviving is a weird concept in the world of cancer. It’s not like surviving an accident (although the trauma and the PTSD it engenders make it similar). That kind of survivor status doesn’t get taken away. With cancer you’re a survivor until you’re not. Since I’ve been guaranteed that my cancer will be back, the post part of post-traumatic, is a bit of an illusion I work to sustain. It’s pre and post at the same time.
My spidey cancer sense, my super symptom-spotter, works overtime and is ridiculously unskilled and trigger-happy. It’s in your leg, no it’s in your head, no wait it’s over there in your boob. I recently went for a routine mammogram. (I have no reason to think my lymphoma has mutated into breast cancer, but I once met a woman who got breast cancer years after lymphoma, so why ignore the possibility. Always be vigilant.) In the waiting room at the Mt Sinai breast imaging center, I had a panic attic. It was building for the weeks leading up to the appointment. I changed into the blue robe, dropping clothes as I tried stuffing them into the locker. Lost my requisition form. Ran back to the change room, crying. Found it in my pants’ pocket. In the waiting area, women avoided eye contact. This one is wacked. She’s stressing us out. Routine? Once you’ve had cancer nothing is routine.
It’ll be back. No one says otherwise. But in the meantime, which could be two years or five or ten, I’m on the survivorship, floating – me and my anxiety, trying to find order in the post traumatic chaos. Sadly and happily, this place is packed (newcomers hourly) with folks that hoped, expected and never expected to be handed the survivor card. No one arrives with boating skills. Really, it’s not a ship at all, more like a flotilla, each of us alone on our own little boats, bobbing about together.
This would be the time to take my clean-bill-of-health-for-now card and bolt. Lots of people do. Instead, I applied for a spot on the PFAC (Patient Family Advisory Council) at the Odette Cancer Centre, I taught a blogging your way through cancer class at Gilda’s Club, I volunteered to do peer support at the Lymphoma and Leukemia Society. I published a memoir about my experience. I belong in this place. I can’t seem to let it go.
But maybe staying here in some capacity, trying to help others navigate the shock, the fear, the boredom, the exasperation, the ridiculous, the rocky isolation of cancer, is a post-traumatic bonus that I’m privileged to receive. It’s not simply about giving back.
Bits of connection, wisdom, friendships, compassion, humor and patience do come out of crazy-awful places. There’s a name for what I’ve gleaned in the hellhole of cancer: Post Traumatic Growth. It’s an actual thing that now gets studied – like survivorship. It’s the well-hidden flip side of the PTSD coin and no one told me how or where to find it. If anyone had tried to suggest there were positives to be had, I can only imagine the language I might have fired back. I had to stumble on this myself. And no need to worry that I’ll forget the lessons. This lymphoma comes with refresher courses.
I’ll be ready – Just kidding, I won’t.
Aviva Rubin is a freelance writer and lymphoma patient from Toronto, Canada.