When I was diagnosed with cancer, my children were ages seven and nine: old enough to know something major had struck our household.
Before I told my children what was going on, I decided to speak to others who had been in my situation. I was put in touch with the mother of a two and four-year-old who had just finished treatment. She had decided not to tell her children; they wouldn’t have understood. She also had a different chemo regimen than I had and managed to keep the better part of her hair with cold-capping. One less red flag.
I had also been connected to another mother who had chosen not to tell her daughters eleven years before when she had been diagnosed, opting only to tell them recently, over a decade after she’d finished treatment. She wanted to protect them. She didn’t want to add stress to their young lives. I got that. I still get that. Everyone has to share — or not share — their cancer diagnosis in the way that best fits her family… and their comfort level. Many of us aren’t sure how to process the news, let alone help our children navigate the news at the same time.
Personally, my kids are forever up in my business: Where are you going? Why are you wearing that? Why do you get to eat chocolate before dinner? How come you cut your hair like that? You looked better before… There was no way I could hide cancer. That said, I really, really didn’t want to tell them. Telling them would mean breaking their little hearts. However, even if I put on my best brave face and tried to go on about my life like cancer wasn’t happening to me, getting my treatments while they were in school, having my mother and my husband cover for me when I was out of commission, they’d sense my fear. They’d feel the change. They’d see that their unshakable mommy was shaken.
As someone who has tried my hardest to be my kids’ gold standard for fearlessness — laughing at monsters hiding under beds, sighing with indifference even at the most spectacular of tantrums, standing my ground when broccoli was served — I wanted my kids to see that I wouldn’t bow to cancer either. If I was able to handle something like that, then maybe they’d know they could do the same when the world hit them with something powerful. Perhaps it would provide them with useful tools for the future. Going through it with them would also force me to put my best foot forward and stay positive. Sure, I’d have moments of weakness, of tears, of anger, and they’d see that was okay too.
But how much did they need to know? What did I need to tell them? What could I skip?
When I was first diagnosed I was overwhelmed with all the information being thrown at me: the course of my treatment, the possible side-effects, the chances of my survival, the likelihood of recurrence with and without endocrine therapy... How sick was I about to get? What would I end up looking like? How scary would I be to my children? My head was spinning and I was asking questions that no crystal ball could answer. When I shared my concerns with my medical oncologist, she referred me to a social worker at Memorial Sloan Kettering, which is where I was treated. The social worker and I spoke about two weeks after I received my diagnosis. After I spoke with her, I was ready to share.
This is basically how my conversation with the social worker went:
Social Worker: How old are they?
Me: A precocious seven and nine.
Social Worker: Okay. So they already know that cancer is scary. Here’s what you do. You tell them there are all kinds of cancer. Some cancers are big like a watermelon, some are small like a grape. You have the grape. The good news is, your cancer is treatable. You’ll have some side-effects, but you’ll be okay. That’s the message. Let them ask questions and answer them. No need to tell them more than they ask. They may not have any questions right away… they may come up with questions two months later… or five years later. Just keep communication open. Answer what they ask you in the words they will understand.
Here’s how it went with my kids:
Spouse: Hey guys, we’re going to have a family meeting in the dining room.
Seven-year-old: What’s a family meeting?
Nine-year-old: It means something bad happened and they need to tell us.
Spouse: Well, yes. We do need to talk to you about something.
Nine-year-old: Oh no. Did someone die?
Spouse: No one died. It’s that your mom got some bad news a couple of weeks ago. She…
Me: I have cancer, but I’m going to be okay.
Seven-year-old: How? You don’t look sick at all!
A gigantic, lone tear rolls down my nine-year-old’s cheek.
Me: Well, when you have an early stage cancer like I do [I was diagnosed with Stage II invasive ductal carcinoma], you actually don’t feel sick. Cancer can be big and advanced, like a watermelon growing inside of your body, or it can be tiny and invisible. Mine is like a little grape hiding in my breast tissue.
Nine-year-old: So they are going to take it out? How will they get rid of it? Will they cut it out?
Me: Yes. I’ll have surgery, but first I’ll have something called chemotherapy. Then after my surgery I’ll have another treatment called radiation.
Nine-year-old: Wait! I know about that. Isn’t that when they inject blue energy into your veins and it kills all the bad cells? I think Marie Curie discovered it...
Spouse: Umm, I’m pretty sure you know more about radiation and chemo than I do...
Me, laughing: Wow! Yes, that’s pretty much a combination of what happens: I’ll have chemo, which is medicine that’s injected into my veins that kills my cancer, and then I’ll have radiation which is a kind of invisible energy, I guess, which nukes any remaining cancer cells. I believe that’s the Marie Curie one!
Seven-year-old: Will you look different?
Me: Yes. For a little bit. But then I’ll be all back to normal. The medicine is pretty strong, so it not only attacks the cancer, but other cells too…
Seven-year-old: Like, how will you look different?
Me: The main thing is that my hair is going to fall out.
Seven-year-old collapses to the floor. She is sobbing. At this point, I’m crying too. No one wants a bald mama. I went to her and put her on my lap.
Me: Baby, it’s going to be okay. I’ll get a super realistic wig… real hair just like mine, I’ll wear cool hats… turbans… bandanas… then before we know it, my hair will grow back. You’ll see…
Seven-year-old: But I don’t want your hair to fall out! No!
Both my daughter and I had almost waist-length hair at this point. It was one of our uniting features.
After this, a few other questions were asked. For example: Will we tell their teachers for them? Yes. Do they have to tell their friends? Only if they want to.
Cancer is a process. Each progressive step of treatment prepares you for the next. Unless you choose to shave your head, it’s not like you have waist-length hair one day, and are bald the next. It all takes a bit of time. I tried cold capping, when it was clear it wasn’t going to work with my ACT chemo regimen, I just cut my hair short and started wearing scarves and turbans. This seemed to help my kids, “easing” them into it.
Overall, my nine-year-old son was pretty quiet through the process. He hugged me often, asked me if I was feeling okay, but generally went about his day-to-day the same as he had before. He chose not to tell any of his friends that I was sick, though a few knew through their parents.
My seven-year-old daughter acted out a bit more, crying more often than usual and having moments of pure, unadulterated anger like I’d never seen. She’d scream and say pretty horrific things, especially when she was tired. One thing I found that helped her early on was taking her with me to buy my wig. While we were at the wig store, I asked her opinion as I tried on different pieces, and I also let her choose something for herself from a rainbow of clip-in hair extensions. She got herself a pastel pink and baby blue streak that clearly made her feel quite cool. I won’t say this made the experience “fun,” but it definitely took the edge off.
My point is that you know your children better than anyone. You know what they can handle, you know what they need, but speaking to a social worker at your hospital can help you better maneuver this tricky situation and give you suggestions based on your child’s age.
Kids are strong. They are resilient. There is no greater reason to push through treatment than for those little humans. Now that I’m past that moment of my life and have a few years of hindsight and experience, I honestly believe my kids have more empathy and understanding today because of what we went through together.
Things might hit us, but together we are indestructible.