In September of 2007, I learned that I had aggressive breast cancer and would have to undergo six months of rigorous chemotherapy immediately, double mastectomies, and weeks of radiation. It was hard news to hear.
In fact, that’s probably the understatement of a lifetime – it turned my entire world upside down.
The doctor’s words came out and the world slowed until every detail was in incredibly clear relief. I remember the pattern of the wallpaper in the doctor’s office, the color of the scarf I was wearing that day and the ticking of the clock hanging lonely on the wall. I remember the nurse holding my hand and the immediate urge to go to the bathroom and throw up. It was truly terrifying and oddly clarifying at the same time.
Suddenly I wasn’t worried about anything other than survival … and of course, about my 5-year-old daughter.
“Can I Still Have My Birthday Party?”
Telling my little girl that I was sick – really sick – was the single most difficult thing I’ve ever done in my life. I had just gone through a difficult divorce and her father wasn’t really reliable or available as a parent, so I was her “rock.” In truth, I was her only parent and her security in life emotionally and financially.
My first thought was, “I can hide this from her,” followed immediately by the realization that I couldn’t. I would lose my hair and be in bed for days at a time during treatment.
When I couldn’t wait any longer, I sat on her bed one evening and told her I needed to talk. She was cuddling our old beagle Hazel and reading a Dora The Explorer book. She looked up at me with her trusting eyes and said, “What are we talking about Mommy?”
Swallowing back tears, I told her that I was sick and that I would be taking medicine that would make me all better but would also make my hair fall out. Her eyes grew wide and her lip quivered. “Will you be OK? Why are you sick? Will I still get to have my 5th birthday party?”
I wanted to answer her questions in a way that wouldn’t overly scare her, but it was also very important to me that I told her the truth (or at least, a version of the truth that a 5 year old could understand). I didn’t want to lie and importantly, I didn’t want her to feel that she couldn’t ask me questions or express her fears and concerns.
“Yes, I am really sick. Yes, I am scared too. The name of my disease is cancer. No, you won’t get sick just because I am.”
The Only Mom With No Hair
The thing that scared her the most was the loss of my hair. To her, it symbolized the illness in a way that made it very real to her.
After my hair fell out, I chose to wear a bandana, not a wig. I didn’t want to hide or disguise the truth that I was experiencing, and my exterior needed to reflect my interior struggle.
I remember vividly the first day I took my daughter to kindergarten wearing my bandana … she was terrified and begged me not to walk her all the way into class. I told her that I wasn’t ashamed, and we walked into class.
I was immediately the object of fascination. A swarm of kids gathered around me, looking and pointing. My daughter was off to the side of the room watching her friends’ reaction.
When I kneeled down in the middle of the swarm and took off my bandana, revealing my bald head, the kids hesitated, then all reached over and touched my scalp. The giggles got louder and louder, the smiles and the shrieks of surprise echoed around the room.
My daughter then slowly walked over into the crowd, touched my head, said “This is MY mom!” and smiled a big smile as if she was proud. My heart swelled and broke in equal measure at that moment.
The Conversation We Still Have to Have
I was lucky. Seven years later, I’m cancer-free and thankful every minute of every day. But there is one cloud on the horizon – as hard as it was to tell my daughter I had cancer, there’s another conversation in our future that will be even harder.
I tested positive for the BRCA gene. If a parent has this breast cancer gene, each of their children, male or female, has approximately 50/50 chance of inheriting it themselves. I happened to get it through my father, whose mother, my paternal grandmother, died of breast and ovarian cancer the year I was born. Because I am BRCA positive, my daughter may also be BRCA positive.
This means that at some point, I will need to talk to her about getting tested and what that may mean to her life and her choices.
Right now, it’s too early to have this talk. She’s only 11 and I don’t want her to fear her developing body. But within the next few years, we will need to discuss her risk and have her tested.
Of course I’m not looking forward to telling her that she might be at high risk for cancer, but if she does test positive, there are many early intervention options available. Some women, like Angelina Jolie, even choose to get preventative mastectomies.
At the very least, I’ll be able to take comfort in the fact that she’ll have all the information available to help guide her decisions. And hopefully as a result, she will never have to sit on her own daughter’s bed and have the hardest conversation a mother could ever imagine.