Reflections on my mothering
with terminal cancer, Part 1
“Parenting is a conglomeration of everything I’ve never learned.”
– John Willey @DaddysinCharge
“Where’s Mom?” queries my daughter. “Taking a nap, I think,” my son mumbles, headphones on, frenetically tapping his keyboard.
It’s true. That 20-to-30-minute nap most afternoons gives me that final boost for the rest of the day and evening.
People ask me how my cancer journey impacts my kids, and napping is one example. I never used to nap before receiving cancer treatments. I can’t speak for my children, but I can share with you my own experience of mothering with terminal cancer, which I sum up into three categories: cars, coiffures and catnaps. Parenting remains harder for me than cancer, including but not limited to enduring the Mine Diamonds song parody. On repeat.
At this time of my life, cars, coiffures and catnaps present tremendous challenges as well as joyous gifts.
“What’s worse than raining cats and dogs? Hailing taxis.”
No driving for me right now, due to the risk of seizure from having brain tumors. Which means every outing is carefully evaluated: Is it worth the effort of asking for a ride, or paying for a taxi, or shelling out for Uber or Lyft? No more impromptu outings for Jane’s Ice Cream at Wallkill View Farm, browsing through Manny’s Art Supplies, burning up gift cards at GameStop or simply getting to a playdate. It’s been over a year now, and I still find it hard to ask for ride help.
But a Vassar chaplain shared this gem with me while holding out two open palms, gesturing: “This one holds pain, suffering, challenge,” then nodding to the other, “This hand is not empty.” Ride reliance means my kids are cultivating their own independent relationships with my family and friends who drive them. These same people will be around after I’m gone, and my family needs their continued support. But that familiarity is so good for them, because they are experiencing an ongoing, long-term generosity of our community at such an impressionable age.
Sometimes people even reach out to us just to include us in their swimming plans for the day. You are how my crew got to day camp this summer. I have even sipped from the Fountain of Youth by stepping out of my comfort zone by riding the train with my kids to visit friends we’re used to driving to see. I was pretty resistant at first, terrified that I would get overwhelmed and lost – plus, I was re-annoyed about not being able to drive there myself. But it was our only option, and as soon as we arrived at Penn Station for our transfer, I immediately felt flush with the muscle memory of young energy: I have traveled by train throughout the world for decades. I am okay; I’ve got this!
My son just started riding his bike to town via the rail trail. All of this is to say that while I feel busy every day, I’m actually home more and doing less, which leads me to greater capacity to be more mindful in my parenting. I used to think that my kids were the cause of my impatience (and a zillion other unpleasant emotions). I had no idea how much my anger stemmed from stress and fatigue. I spend much more intentional time with them now. I am so proud of my efforts to be this better, truer person for both myself and my children.
“There are three ways people wear their hair: parted, unparted or departed.”
Whenever I’m on a hair-losing chemotherapy and shave my head, I invite my kids to help out. Maybe it’s weird to have a bald mom, but every time, both kids get used to the smooth shiny surface, or obsessively touch the kitten-soft regrowth on my head.
But my physical side effects aren’t limited to my noggin. When I am on steroids, I consume unusually large quantities of food. I volunteered to hold my son’s dinner plate one night so the dog wouldn’t get it while he grabbed a drink for himself. Then I proceeded to eat it. My own son’s dinner! My daughter has busted me twice for drinking milk straight from the carton. They witness behaviors that I deem unacceptable, yet here I am doing them!
I’ve had PleurX chest catheters hanging off my torso, big scars, huge yo-yo weight gains and losses, intense back pain; and, while my son and daughter are sympathetic, none of it really fazes them. And to be completely honest, any discomfort I’ve had over their appearance over the years has greatly diminished – like the first time my son cut his own hair around age 3 as we were leaving for a funeral, or my daughter’s insistence that matching socks don’t matter.
“Why would anyone go big when they could go home?”
My children witness my varying energy levels every day. I have missed countless soccer games, Girl Scout and 4-H meetings and birthday parties because I just didn’t have enough oomph to pull them off. But it’s not just physical energy that goes up and down; my social dynamics do that, too. For the first time in my life, I am feeling my own personal limits (usually after I have overdone them).
The beloveds I live with have strong introvert tendencies, and I have rarely understood how people live that way – until cancer. I used to try to connect with every person at a party, while my kids would stand behind me or along the margins of the room, reticent to engage. Nowadays, I tend to talk to only a few people at a given gathering because I don’t have the strength or reserves anymore to accommodate too many one-on-one exchanges. As I find myself on the social sidelines, I’ve been taking a page out of my kids’ book: Sometimes I just sit, and people come to me! I call them sympathy shifts. I always thought I had to “make it happen.” Nope!
I also used to find it tortuous to walk slowly with my children. Now that I periodically find myself in a mental or physical slowdown, every malignant mile dramatically increases my compassion and understanding of my kids’ own ailments and injuries. None of us chooses our bodies. We can shape them and change them, but as humans, we are alive and subject to ailments and infirmities over the course of our lifetime. I simply never had any before. I’m not just talking about illness-related changes; even aging itself can be a real challenge.
I am increasingly relaxed about my family’s (formerly exasperating) personality traits, activity choices and social interactions because, for the first time, I am living this quieter pace myself. I know not everyone needs to experience something directly, but it helps me a lot.
I close Part 1 with this request: Did you lose a parent when you were young (under 20)? If so, what do you wish that parent left for you, said to you or taught you? I am interested in anything you have to say; please share those reflections with me at firstname.lastname@example.org.
Head On and Heart Strong!
Kids’ Almanac columnist Erica Chase-Salerno was diagnosed with Stage IV breast cancer in the Summer of 2015. To read more about her experience, visit https://hudsonvalleyone.com/tag/ericas-cancer-journey.