Writing my way through my cancer trip, I've let pretty much everything hang out – from lady bits to emotional fits. But ever since I was diagnosed last October with indolent marginal-zone lymphoma, the one thing I've steered clear of is talking about my children.
Almost anything can be made more palatable with humour. I'm not sure I'd make it through Lymphomaland with my sanity intact if, say, I couldn't imagine Fred Flintstone, one foot on my back, using a corkscrew to extract bone marrow. But my kids – well, that's just not funny.
In fact, for the longest time it felt unbearably unfunny – raising the subject of cancer with them, talking through their fears, controlling my own, failing to ask for their help, figuring out what they need. It remained the only box I left closed to the public. In my head, however, it's always been open – wide open.
But I know that too many of us struggle with managing kids while we manage cancer. And besides, it helps me just to write it through – to lay out my experience of what works, and what flops.
It's the truth that everything changes when you have kids – you're no longer the centre of your own life. And so it goes with cancer. Now, two things compete for attention: I used to be terrified of getting the disease; now I'm afraid of its effect on the kids. How it might ruin their lives. How I'm going to spoil everything.
So first, I waited out suspicions, frustrations, appointments, examinations, biopsies, reports, and confirmation, until I had enough information about my cancer, and the prognosis (they will treat it, it will go away; when it comes back in a bunch of years, they will treat it again). Then, I told my two sons, on the couch in the living room, just the three of us. I waited until I felt strong, wouldn't crumple and leave them devastated and confused. A moment I could be fully mom.
In Lymphomaland, I'm still a child – a kid with kids, on a wacky family trip with no GPS, no seat belts, lots of video games, and only minimal discussion about where we're going. Time with my mature, adult self has not always been easy to find, but the situation demanded her attendance. The conversation went okay. I was calm, so they were calm. Like me, they focused on the excellent prognosis. Aside from a layer of anxiety I know is there, their days don't look much different from before – exuberance, ass-dragging, obliviousness, rudeness, self-absorption, laughter and love. Their fears take a range of forms across a continuum from sweet and caring to pissed off and cranky.
"You're going to be all right, right mom? It's going well?" my 14-year-old asks – offering me the only answer he wants to hear. Now and again he reaches over, pats my hand and smiles, to reassure me he is there for me – and that I am there.
My 10-year-old now likes to sleep with me, not every night, but once or twice a week. He'd never done that before. In the darkness, he often processes his worries. Mostly, they have little to do with me. But occasionally he cries and tells me he doesn't think he can live in this world without me. I remind myself he's the dramatic one, who used to love watching himself cry in the mirror and monitor the dramatic impact.
One day, in the dead of winter, the 14-year-old was heading to school in running shoes.
"Put on your boots."
"It's ridiculous; those shoes are mesh. You may as well be wearing flip-flops."
"Germs." I yell. "I'm sick. After chemo, my white-blood-cell count drops. If you get sick, I get sick. Do you want to make me sick?"
Did I really just play the cancer card on my kid? He walks out, and I slam the door behind him. He doesn't care.
Why is he doing this to me? But of course, he's not doing anything to me. He's simply doing what 14-year-olds do.
For months I didn't consult others for guidance on this. But when I began to wonder whose needs I was trying to meet, and if imposing chores was somehow an expectation that they should take care of me, I started seeking advice.
My mother focused primarily on the practical. I'm her kid; she's looking out for me. "You're sick. They should be helping out way more." Frankly, she was saying that last part long before I got cancer. Still, I can't help feeling judged.
I try to explain to her that pitching in is not the issue. The issue is my own emotional demands: I'm weighing their love and support against their willingness, or lack thereof, to help. I'm using guilt to leverage labour. Where's the balance between having them pull their weight (they're old enough for that) and burdening them? Surely, flushing the toilet or putting their clothes in the hamper isn't too much to ask.
Another time, I got annoyed when my older son asked why we have to eat "other people's leftovers."
"Actually sweetie, this is food my friends have generously, lovingly made especially for us, to make things easier because I HAVE CANCER."
The problem's not the food; my boys just want everything back to normal. They don't want me to need their help, or anyone else's.
My friends who have cancer and kids are all grappling with the same issues. What damage will be caused by the exhaustion, pain, doubt, vulnerability, weepiness, and bad cancer-triggered behaviour on display? How much should be kept hidden? I talked to a friend who was diagnosed with a brain tumour four and a half years ago, when her children were 2½ and 6. She's chosen not to use the word cancer. Not then, not now. She's clear with them about being sick and tired through chemo, but she and her husband have decided not to create the kids with the mom who has cancer.
My choice was different. I may not agree with theirs, but these decisions are profoundly personal.
Is there a right way to do this?
I got together with Andrea Warnick, an educator, grief counsellor, nurse, and thanatologist (an expert on death), who helps families psychologically and emotionally prepare children for everything from illness to dying and grief. "Honesty" and "openness" were her first words. In her experience, ever since Terry Fox, children associate cancer with imminent death. Saying nothing, trying to hide it away, will not keep sadness at bay. It will invite anxiety, and kids are creative when it comes to fear.
They rarely miss the obvious, but if they think silence is what we need, they'll try to protect us as much as we try to protect them. Warnick talks to eight-year-olds whose parents think they have successfully shielded them from the horrible truth. "Oh, yeah," they'll say. "My mom has cancer."
I'm lucky my prognosis is good, although I still have four weeks of daily radiation ahead, with unpleasant side effects and no guaranteed positive outcomes. I try to explain what's coming to my older son. He grimaces.
"You don't really want to hear about this, do you?" I say.
"Sorry, not really, mom."
Warnick suggested telling them that "if anything changes" (now that's code) I'll let them know. Please let me never get there.
When I asked about my pitching-in-with-the-chores dilemma, she insisted it should be discussed, but not mid-blowup. On his way to school, snow gusting in through the open door, was not the time to ask my son to take some responsibility for my well-being. Warnick even suggested a signed contract, laying out chores and expectations. So rather than screaming at them about dirty dishes in the basement, I can point to the contract. (Then, maybe, I'll yell.) Parenting through cancer is messy business, as filled with unknowns and best guesses as the disease itself.
Fearful as we may be about the potential damage, there is growing research into something called "post-traumatic growth" – the positives that come from hardship: things such as resilience, empathy and kindness. These may not always be natural outgrowths of trauma, but where we have the opportunity to prepare our children, to build their ability to cope, as we strengthen our own, we should take the time to do so. It's less a question of, "Can they handle it?" than of, "How can they handle it best?"
Cancer sucks, but I'm not going to let it spoil everything. It's a new normal. It has seeped into our vernacular. My 10-year-old now says, "I'm more tired than if I'd had chemo." We'll be different people than we would have been without cancer. But the kids are going to be fine. And if they're not, it's not going to be my cancer's fault.
Aviva Rubin's four-part series, Adventures in Lymphomaland, appeared in The Globe and Mail in March. Read the first installment here. She blogs about enduring, enjoying, bemoaning and lampooning life with cancer at nothinginmoderation.ca. Follow her on Twitter at @aviva_rubin.