“That’s a really good question,” isn’t that what you want to hear when you ask your doctor, “What do I tell my kids?” after being diagnosed with cancer.
But that’s what I’ve heard, along with a collection of other useless non-answers from various experts, including, but not limited to:
“Well, it really depends.”
“There is no right or wrong answer.”
And my personal favorite…
“Only you, as a mother, will know what to say.”
“Really? ‘Cause I do not know what to say and I would like some help,” was my answer to that last question.
After I was diagnosed with stage 3 breast cancer in late 2022 and started figuring out how to tell my kids, I felt like the internet and social workers were reading bad fortune cookie liners to me. .
I also found a lot of conflicting information.
“Tell them it’s cancer.” “Don’t use the swear word ‘C’.”
“Prepare them for all possibilities.” “Don’t tell them anything they don’t ask for.”
Don’t millions of people have cancer? How have we silenced this part of hell? In addition to the insufficient and confusing information, the content itself struck me as stark. I bought all the books, read all the pamphlets full of jargon, but I couldn’t find myself in any of these books.
“Mom is going to be sick.”
“Mom will be bald.”
“Mom won’t be the same for a while.”
For a minute I wondered if I was in denial. At the start of the journey, I still felt like myself and knew that would change, but I certainly did not imagine myself becoming the same frail, pale, bedridden pencil figure pictured in the books I was supposed to show my friends. children. Every image of a mom with cancer reminded me of grandparents lying in “Charlie and the Chocolate Factory.” Couldn’t they at least draw my sad and sick future self in those terrible books in something other than beige pajamas?
Within weeks of my diagnosis, people in our lives were starting to ask me too. “Do the children know? How are you going to tell them?
I was struck by the fact that there was no playbook, so I started to piece together something that was more of the authenticity and truth that I wanted the conversation to have. I feared that the wrong words would instantly expel the innocence from their souls, immediately catapulting them from the wonderfully naive children they should be at 3, 6, and 8, and into heavy-hearted, burdened, scared little people.
I decided if it was the fight of My life, I used to tell my children My path.
My husband, Dave, and I first talked about what we didn’t want. I had a list of 3 things:
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We didn’t want it to feel like a bad TV movie. During dinner, the sound of forks on the plates, a bomb dropped by the parents starting with “Children, mom has news to share”, the traumatized children. We have all seen this scene. I didn’t want this scene.
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We didn’t want the conversation to be about mom being “sick”. My state of mind since the diagnosis has not been that I am sick, but that I am cured.
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We didn’t want secrets or panic. Back home we say “secrets make you sick”, so we agreed to tell them the whole story in a way that they could understand and also talk about themselves. There’s not a lot of “no panic” language when it comes to cancer. Words like cancer, chemotherapy, radiotherapy and mastectomy are quite heavy. We would have to be creative.
Knowing what we didn’t want, we had to land on what we were actually going to say.
As someone who has worked in marketing, consulting, and technology my entire career, my love language is a slide deck. In my professional life, that’s how I tell stories. I spent many sleepless nights “building bridges” for large meetings – I was going to do the same for my family. I found a template and got to work on the most important presentation of my life.
I decided to personify my disease and summarize a summary story for my children.
We named the dumbbell shaped tumor in my breast Barb. Barb was a nasty boo-boo in mommy’s boobs, and Barb had to go.
The acronym for the clinical trial drug I was going to take was MARGOT, so Margot was my superhero. I used to go to Boston every week to get special medicine for Margot through a magical tool called a port, and it would help reduce Barb.
The slides I showed my kids:
We chose a Saturday morning to have “the conversation”. We were determined on the day and time so the kids had the whole day with us if they had any questions (not on a school bus) and not so close to bedtime that their little minds could race alone. By strongly avoiding the sad scene of the TV movie – while we were around a table, there was no meal—we played a game together, which we do frequently. A funny one too (Kids Against Maturity – highly recommend). The mood was light and we were laughing.
No sad sounds of forks on the plates.
I presented the slides to the kids after we finished our game, telling them I had something I wanted everyone to know. We introduced Barb and Margot, and talked about Margot’s side effects, and what would happen in the weeks and months to come.
Bringing life to the cancer that was trying to take my life was ironically empowering. By doing this, you don’t hear us talk much about “mommy’s cancer” in our house. We’re talking about Barb (and hearing their little Boston accent say “Barb” makes me smile).
There are two words we decided to omit from our slides: cancer and death.
We wanted to give our kids the most important things first (what’s going on, what to expect) and decided to answer questions when they brought them to us.
A few weeks later, my 8 year old son asked me if Barb had cancer.
“Yes, she is,” I told him. He then asked me how we were going to get her out during the operation, if she had legs and if I could keep her in a jar.
“Can I still call her Barb, though?” He asked.
“Yeah, that’s who she is,” I told her. “It’s Barb.”
Last week I had a double mastectomy. As my second son says, “Barb has flown away.” I had traces of cancer left, but the majority of Barb (and the friends she made in 7 lymph nodes) are gone, as a result of the chemotherapy I received before surgery. I will start low dose chemotherapy and radiotherapy as an insurance policy to make sure nothing comes back. We told our kids, ‘Barb is gone, now we’re burning down her house so she can’t come back!’
The question I have not been asked is, “Could you die?” It’s a question I dread more than my treatments and surgery, one I know is coming and really doesn’t have a good answer.
While my prognosis remains curable, aggressive stage 3 cancer leaves me in a place where the unknowns can erode you quickly if you don’t calm them down. I don’t want my kids wearing this, and I don’t want to lie to them either.
My planned response is, “I don’t plan to!”
And this is the genuine truth.
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This article originally appeared on TODAY.com