Pretending everything was okay wasn’t working for us.
My husband Cameron, daughter Lily, and I celebrated my 12-year cancer-free anniversary in February. We annually throw a huge party we lovingly dubbed Lung Leavin’ Day, and invite all our friends and family. Since the first anniversary of my surgery in 2006 that removed my left lung to eliminate the cancer, the party has grown from a few people to almost 100.
I was diagnosed with malignant pleural mesothelioma, the cancer caused by asbestos exposure, when I was just 36 (very rare for this cancer), and my baby girl was only 3.5 months old. I never had a chance to simply be a mom and enjoy that new baby smell because after I started noticing symptoms I received a quick diagnosis and was swept up in a flurry of doctor’s appointments, surgical procedures, scans and fear.
No one can prepare you for a cancer diagnosis, let alone a cancer diagnosis as a new mom. All of a sudden I had my own health problems to deal with, along with trying to figure out how to be a mother to a newborn baby.
Our world was turned upside down. I had a rare cancer with about a 2% chance of survival past five years at the time of my diagnosis. This presented us with a whole different set of issues that we never dreamed of, namely the very real possibility of my husband raising our daughter alone.
We were faced with some tough decisions to make, the first option being to travel 1,400 miles away from our home where the best doctor was located who could perform a risky surgery that could save my life. But, our daughter couldn’t come with us.
We made the choice to travel for the surgery, because we both felt that this was the best chance I had to be around to raise my baby. Thankfully my parents stepped in and Lily traveled 600 miles across the state to go live with them while my husband and I got on a plane in Minneapolis to fly to Boston.
We missed Lily’s entire sixth month of life, while I fought for mine, watching her grow through grainy photos emailed by my mom and dad.
I’m happy to say that the risk was worth it. The surgery worked and the debilitating treatments did what they were supposed to. As of now, 12 years later, I have no evidence of disease.
This does not mean, however, that I am free from the effects of the surgery and treatments. Life as a cancer survivor is not all about “living life to the fullest.” I still have regular scans to stay on top of things, and still must travel 1,400 miles every six months to see Dr. Sugarbaker at Baylor University.
Lily was so young for much of my treatments and thankfully does not remember any of it. She doesn’t remember being raised by her grandparents for three months while I recovered from surgery. She doesn’t remember me laying on the couch after chemo, too tired to get up or play with her so I would close the doors to the living room and get all the toys out in hopes she would entertain herself. She doesn’t remember standing over me while I retched into the toilet every day during radiation, and her rubbing my back asking ‘Mama okay? Mama okay??”
But what she does remember is that I would leave every few months to fly to see my doctor. When she was young we would try to coordinate the trips with overnight stays with her favorite aunt, so it was something fun, not worrisome. We tried our best to not let it disrupt her world.
As Lily got older and started understanding things, my husband and I made sure to open the lines of conversation in a candid and honest way, so she would feel safe talking to us about the cancer. We never hide anything from her, and have included her in all our decisions. This works best for us.
I have many days when I simply don’t feel great as a result of radiation and chemo; even all these years later, the treatments still affect me. I’ve had hospital stays due to pneumonia and heart issues, all a result of living life with one lung. We communicate with her through these times so she understands.
We just assumed she was okay with things until she was around six. It was the day before I was supposed to leave for my scans, and she started complaining that her tummy hurt. I went through all the things a mom goes through when your child complains about a tummy ache, finally getting down on the floor to feel her forehead to see if she was feverish.
I’ll never forget the look on her face as she looked up at my with her big brown eyes and asked me; “What if your scans don’t come back clear?” My heart broke into a million pieces.
I gathered her up in my arms and did everything I could to reassure her that the reason I travelled so far to see my doctor was to make sure I was taken care of. I realized that we had just taken for granted that she seemed okay with things without ever really talking with her about it. That day it really clicked for me—kids are far more intuitive than we give them credit for, and they understand things better than we think.
From that point on, we started asking questions and we changed our overall approach. We made sure our whole family was on the same page—including aunts, uncles, and grandparents—so when she talked about it to them, they could answer with confidence. (Also, communicating with family members and friends about how you approach cancer conversations helps them cope as well.)
We enrolled her teachers and counselors at school in what was going on, so if she all of the sudden came to the nurse’s office not feeling well near the time I was gone getting scans, they could understand why she may feel that way. Days I don’t feel well turn into cuddle days, making sure she understood why I had to lay low that day.
Over time I’ve become a bit of a bragging piece for Lily. She tells people I have one lung and that I have survived cancer for 12 years. Mostly, she tells people she saved my life—which she did—because if not for her, I maybe would not have fought as hard to be here.
As parents, we want to protect our kids and one of the ways we tend to do that is by pretending things are perfect and fine, but sometimes, that isn’t realistic. My husband and I have found that open, honest discussion has been far better for us than trying to hide things from our daughter. She has a much wider world view and empathy for others, both of which make me so proud.
As a parent, you will know what is right for you and your child given the specific obstacle you have to overcome. In my case it was cancer. Your case might be tackling a divorce or a cross-country move or the loss of a grandparent. What works for one, may not work for the other, as each child processes things differently. It’s not a bad idea to enroll the help of a counselor if needed and utilize resources available.
Being a parent is tough in its own right, but throwing the upheaval of cancer (or another extremely difficult and delicate situation) in the mix makes it a territory few people talk about. By coming together, supporting one another and talking about the hard stuff, this can change.