Ten months after giving birth to her second child, my friend, who was nursing, felt a lump, but assumed it was a clogged milk duct. She was 35, had no family history of breast cancer and had recently had a healthy pregnancy. Then she became short of breath and tests revealed lung cancer, as well as tumors in her eyes, spine, neck and hips.
That lump wasn’t a clogged milk duct. It was pregnancy-associated breast cancer, a form of the disease that affects 1 out of every 3,000 pregnant women annually during and up to one year after birth, according to the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. Ten months after her diagnosis, my friend died. During her illness, she struggled with what to tell her older child, who was 2. I followed her lead to keep my own 2-year-old on the same page. We could have benefited from Jessica Reid Sliwerski’s “Cancer Hates Kisses,” a book that depicts moms with cancer as superheroes to put their battles in terms young children can understand.
Besides the kid-friendly illustrations, short sentences and straight talk about hair loss, exhaustion and other cancer-fighting side effects, what grabbed my attention was the author’s own story. Sliwerski, 35, was exploring her three-months postpartum body when she found a lump in early 2015. Her gynecologist blew it off as a cyst, but Sliwerski wasn’t sure. On March 31, 2015, she was diagnosed with Stage 1A invasive breast cancer. She caught it before it spread, and after a double mastectomy and three months of chemotherapy, has been in remission since April 23, 2016.
I spoke with her recently about the book and her experience with cancer. Here are edited excerpts from that conversation.
What made you get a second opinion on the lump?
I’ve met a lot of other women who are new mothers who either found lumps while pregnant or found lumps shortly after having their babies and were dismissed, and they didn’t have the tenacity that I had — or the neuroticism, or maybe both. By the time they finally got someone to take them seriously, they were looking at Stage 3 diagnoses.
Was it pregnancy-associated breast cancer?
No one ever talked about my pregnancy. It was always something that was discussed insofar as they asked how I found the lump, and I would talk about how I had just had a baby. Once I knew that my pathology indicated that my breast cancer was hormone-positive, I started developing a theory that this was probably something that was there and maybe not invasive, and my pregnancy blew it out. I was a year and a half out from my last chemo and I had moved from New York City to San Francisco, and I went to see a gynecologist in the Bay Area who specializes in breast cancer patients. We were talking and when she heard my story, she said, “Oh, you had pregnancy-associated breast cancer.”
Meanwhile, you were dealing with being a new mom to your daughter, Penelope. How did you cope?
[In addition to medication and mental health sessions], I started to just focus on my daughter. I couldn’t sit around and feel sorry for myself when there was someone more helpless than me that needed to be taken care of. Cuddling with her and reading to her and going for walks with her and spending time with her was my place where I went to escape.
How did the book come about?
I had this woman tell me about her daughter who saw her bald and was so angry and said, “Why would you do that? You’re ugly!” And this woman was so hurt by what her daughter was saying. As I listened to this story, I was thinking, “Right, because your daughter doesn’t understand. There’s no frontloading in this situation. She doesn’t understand why one day you had all of this beautiful hair and then suddenly you’re bald.”
I started to, in my mind, put together this narrative of myself and these other women I was engaging with who are also mothers and trying to figure out how that narrative could become a story that could be read by mothers to young children to demystify cancer, and to reframe the person going through treatment not as “oh, this poor person going through cancer,” but as this fierce, freakin’ warrior, this brave, beautiful, courageous woman who draws her strength from her children. I wanted children to understand that they have a currency and they can, through hugs and kisses and love and laughter and snuggles, help their mothers heal.
What other lessons do you want readers to take away?
To talk about it. Cancer is so complex. How do you begin to explain to your kids in a way that won’t totally freak them out what’s going on with you? I spent a lot of time trying to figure out how I break this down into the most simple explanation that honors how intelligent young children are. We use the words “chemo” and “radiation” and “surgery” in this book, but also don’t give them so much information that they’re totally lost and they don’t get it.
We don’t know what kind of cancer the mom in your book has, or if she beats it. How come?
I wanted to create a story that could work for any mother undergoing cancer treatment. For example, even though I’m a breast cancer survivor, this story is not about breast cancer. It’s just about cancer. If I made it about breast cancer, then what about all of the other mothers who are going through this really difficult experience?
I think there can also be an unpredictability about cancer, and so I didn’t want the book to end one way versus another. I wanted to leave it open to interpretation. You just don’t necessarily know what is going to happen.
Stephanie Kanowitz is a freelance writer based in Northern Virginia. Find her on Twitter @StephKanowitz.