I saw how my family, including me, really felt about my husband
In 2000, my husband Brian was diagnosed with Stage III B Hodgkin lymphoma, which has since become a prominent part of our lives. My children and I belong to Gilda's Club, a cancer support community. And recently, we were asked to help record a promotional video to be featured at a fundraising gala for the local chapter and on the club's website.
I'm not a "spotlight" kind of girl, and I don't feel drawn to video cameras or speeches, but I've been going to two Gilda's Club programs-a caregiver support group, and a writing group - for nearly five years. Everyone is nurturing, supportive and so nice. My son Marco and daughter Gabriella also attend a group, where they do projects to help build resilience for kids impacted by cancer. It's priceless, and it's free.
If this is something I can do to give back, I thought, I'll do it. My kids were on board as well.
It was an interesting experience. In preparation for the video shoot, the optimistic and colorful "land" where the children hold their group was transformed into a makeshift studio. There was a backdrop, professional camera equipment, lights and hidden microphones.
Listening to Gabriella's and Marco's unrehearsed responses to the interviewer's questions, I learned quite a bit that I hadn't known before.
I found out that my daughter is afraid that her dad is going to die. I don't think about death too much, myself; I think about trying to live - right now. The side effects, meds, treatments, appointments, physical changes, bills, emotional changes - that's what consumes my thoughts, not the end point, not death. But, in her nine-year-old mind, Gabriella fears that her dad will die. And, unfortunately, she knows how final death is: This year she lost both her first dog (who died two months after being diagnosed with the same cancer that Brian has) and her grandpa.
My son, age seven, is different from his sister, as this video demonstrated. She talks, he turns in. She's boisterous and emotional, he's calm and collected. When the interviewer asked Marco how cancer affects him, he said, essentially, "Well, I don't really think about it that much." Meanwhile, my daughter was rambling on about death. Despite it all, I had to laugh.
Brian was first diagnosed at the youthful age of thirty, in his third year as a medical resident. Despite intensive chemo, the treatment failed within a year, and he underwent a bone-marrow transplant. Still, he returned to work soon after to finish his internal medicine residency and go on to a fellowship in cardiology. The transplant put him into remission for six years, at which time we had Gabriella. As he finished a second fellowship, in interventional cardiology, we almost caught a glimpse of what normal looked like.
When Gabriella was eighteen months old, and I was pregnant with Marco, my husband had a relapse. Our future had felt ripe with hope: Brian had started his first job as an interventional cardiologist a couple of months before, and we'd just moved away from the home we all knew. That made the news especially devastating.
Since then, we've been riding a relentless roller-coaster of cancer remissions and relapses. Brian's cancer has returned another six times.
The point is that my kids have never really known their dad without cancer. This is all they know. So asking Marco how he feels about it is like asking, "How do you feel about your dad having brown hair?" He doesn't feel the taboo yet; it just is what it is.
They asked both kids if they thought that Gilda's Club had helped me.
"She probably doesn't get much out of it," Marco opined. "I don't really think she likes it very much."
I looked at him cockeyed and said, "You think I don't like it? Why do you think we come here?"
"For your kids," he said. "You bring us here."
That was an eye-opener. Isn't that the typical image of a mother, relentlessly giving to her children? Since I do everything for their benefit, it seems, this must fall into the same category!
We recorded for almost two hours, and the resulting video was cut down to a five-minute segment, which the filmmakers sent to me.
I found it tremendously thought-provoking to see my face on film and to hear myself talking about our life with cancer. I know that I live this cancer thing every day, and I know that I try to be open and supportive with my kids. But watching myself sharing my natural, honest thoughts in this unscripted way, I saw an unsuspected vulnerability. I saw my kids talk about something that sucks. I saw my daughter smile and talk about her fears and her friends, and I saw my son snuggle up against me and, once, hold my hand.
I saw that we are three people who have grown closer by going through this and that we're braver still to share the experience with others. I never saw that side of me, until I saw myself from the outside.
At first, I felt weird, almost embarrassed, watching myself - seeing my mouth, which I'd never noticed is crooked when I speak, and my pale skin. And I remembered when the actual filming was done, feeling an overwhelming sense that there was so much I'd forgotten to say. How can you sum up cancer in two hours? I sit in that support group every other week, and we could talk for days without running out of things to say.
Toward the end of the playback, when the camera panned out, and I saw the three of us together, I started to cry.
Look at us, I thought. Parenting is so hard, but look what I've done so far.
In sports, the coaches always say, "Record yourself and watch it: You'll notice so much." Watching this film let me see my unalloyed vulnerability - a lane I frequently bypass in favor of simple self-preservation. I write and reflect a lot, but this was different.
If my kids took something from the experience, I hope that it was an awareness of a side of me I don't often show them because they're my kids, and I'm the adult. I hope that they saw that cancer really, really sucks for me too - even though Mommy takes them here and there and cooks and cleans and works and chats and seems normal. I hope they saw that when you get right down to it, we're the same, my children and I.
And we're in it together.
Melanie Di Stante is a dietician. This piece was originally published in Pulse - voices from the heart of medicine. January 24, 2017