“Did you find everything you were looking for today, ma’am?”
“My name is Twila. MY MOM HAS CANCER!”
“No, no, no, remission. I’m in remission from cancer.”
“Oh, okay. Are you a member of our savings club?”
It was just a typical errand for my five-year-old and me. People have no idea how to react to her unnerving proclamation. She beams with pride when she shares her truth. She’s showing me off in her own way.
My husband and I have been of one mind since all this began. We are honest with Twila and keep our explanations simple. If the questions keep coming, we answer them. Being open about my diagnosis has brought so much support to my family.
I was diagnosed with AML Leukemia in 2014. My daughter was only four. I was lucky that my first six-week stay was before cold and flu season and she could visit most days. She was by my side through much of my treatment. I decided not to shield Twila from what was happening to me on a physical level. She was a witness to my dedicating my whole self to healing and the full-time role of cancer patient. The only part of my treatment she missed was my transplant. No one under 13 was allowed on the floor at that time — stupid cold and flu season. So I decorated my room with her pictures and her art and called as much as we could.
For me, parenting during treatment was very much hands off. I handed over my mom role to my husband and mother. For me, 2014 was dedicated to resting, covering myself in plastic wrap to take showers, post-shower naps and placing pills into my double wide plastic pill organizer. I was not reliable to stay awake long enough to make it through Bubble Guppies and I didn’t have the energy to negotiate the right amount of bites necessary before a meal was done.
Once I was off immune suppression and beyond the constant fatigue, I was released back into normal life. I returned to work and my mother returned to her own home 800 miles away. Snapping back into the routine of parenting was much more difficult than I expected.
I came back to work with something to prove but coming back to parenting was more emotional. I was not entirely ready, it was overwhelming and filled with “BS.” As a cancer patient I learned to loathe wasting time on unimportant things. I have a deep distain for anyone who complains about the weather. My daughter complains about her socks and how her sandwich was cut. My first steps back into the real world were a shock to the system.
Discipline was the hardest. I just didn’t have the heart for it. I internalized that I was the reason she was acting out. She needed limits but I just wanted to hold her.
I’m grateful to have an excellent therapist in my doctor arsenal and a parenting support group. I’m not the same person I was before diagnosis. I’m still not entirely comfortable being in remission. The first five years are like living in limbo. So much uncertainty is difficult to digest for adults. How do you explain the unknown to a now-five year old?
My time each week talking through and reflecting on my feelings was key to moving into a new chapter. Gilda’s Club facilitated the parenting group and at the same time provided a support group for children. I met parents who had been through the worst and were making things work; and others who were in the middle of bad behavior and chemo. The group helps me feel less alone. I have tips and tricks to share and a great deal to learn from those who have been there.
My daughter is also in therapy. It is nothing like my sessions. She plays on the floor of a social worker’s office each week. They paint, draw and play Uno. Children’s therapy is a long and slow process. It is an afternoon that my daughter looks forward to and an allegiance that I cherish. The teachers at Twila’s school are quick to evoke the word trauma when assessing her behavior. Having a professional to confer with and coach me has been essential. I am grateful and fortunate to have found mental and physical support for my family.
I know my illness has shaped my daughter in ways that I may never fully comprehend. I try to focus on how her capacity for empathy and medical knowledge has grown. I may have created a future doctor or nurse. She also is very young and may remember little of these relentless years. I hope she can see that we are powerless against uncertainty, and that love and community are how we survive.