By Kristen Brookes
I am a cancer mom. Like a gymnastics mom or a swim mom, but different.
At gymnastics, we would all huddle around the window into the gym, admiring the strength, grace, and coordination of our daughters. Seeing how hard they were all working. Sharing in the pride and excitement as one child did a beautiful beam routine or nailed a back handspring for the first time. We passed many hours in a very small room with long, rambling chats. We talked about our children together, and we shared stories of our lives. We were friends.
At cancer, although I smile at the familiar faces from weeks spent inpatient on the 8th floor, compliment the cleverness of a dad bringing a futon on the elevator, and show another mom a picture of how great my 13-year-old daughter looks in her new wig, I do not talk with other cancer parents. We are not cancer moms and dads together.
I am sure some people create community around their children’s cancer, but I do not see a lot of parents happy to see one another at the clinic, picking up their conversations where they left off or sharing the mundane details of their lives. I believe we are not cancer moms together because what we have to share may not be very nice. I do not want to know other children’s diagnoses. I don’t want to know how other children are doing because I do not want to be more afraid or experience more pain. I do not want to hear of more bad things that might happen to my daughter. I do not want to know children who might die. And I do not want to know their parents. I do not want to feel their loss. And I do not want the possibility of my own loss to be any more real than it already is.
Rather than connecting with the cancer moms, I google-stalk their kids, hungry, despite myself, to learn about their diagnoses and prognoses, finding out things I didn’t know. I feel a silent empathy for the mother whose child kicks and screams every time she has her port accessed, extending their clinic stay needlessly and aggravating even the most patient of nurses. And I feel both disturbed by and sad for the fifteen-year-old boy who tried to escape admission to the hospital and had to be wrestled into submission by security guards. I feel concerned when “Big Boy,” the tall young man who drives himself to his appointments, looks drawn and hollowed-eyed and even more when I hear a doctor lecturing him about his defeatist attitude. Relieved when I see him again, months later, looking much better.
Being a cancer mom doesn’t mean that you have a child who is a gifted athlete, who makes age group cuts, who has beautiful strokes, or who is still swimming hard at the end of practice when everyone else is slacking off. It doesn’t mean sustaining yourself during long meets with the hope that your child will beat her best time or with the dread that she might actually make finals and have to come back in the evening. It doesn’t mean becoming over-invested in the activity not only because you enjoy your child’s success but also because it is easier to endure six hours of swim meet when you are tracking her times against meaningful markers.
Being a cancer mom means, of course, that your child has cancer. It means that all the fears you ever had and laughed away were warranted. Your absolute worst fear—or maybe even something much worse than you ever dared to fear—has come true.
Being a cancer mom means having ripped from you the confidence with which you faced the world, the certainty that things would work out. And along with it, your ability to tell your child that everything will be okay. It means being left with a heightened sense of vigilance, an understanding that something terrible could happen at any moment.
Being a cancer mom means always having your bags packed, in case you have to go to the ER and then get admitted. Lecturing an alarmist resident, telling him that, for hematology/oncology parents, low hemoglobin is really not “of concern:” it just means she needs a transfusion.
Being a cancer mom means losing yourself in hospital time. It means spending six or sometimes eight hours at the clinic, sitting and sitting as the poison that is to save your child’s life drips into her body. Finding a fondness for the characters in the Disney shows you before disdained. Losing your ability to think, as your mind becomes filled with blood counts, chemotherapy drugs, and countless medications for side effects. And mostly with worry.
Being a cancer mom also means gently bathing your child’s head, gathering the clumps of loosened hair, as one cares for a baby, with love and as a matter of course.
And it means feeling close to and dependent on people you wish you had never had to know and whom you can’t wait to never have to see again.
I do not want to be a gung-ho cancer mom. A mom who takes up the fight, raises funds for research, organizes a team for the fun run for the local clinic. And I pray that I will never be the ultimate cancer mom, who, after the death of her child, creates and dedicates herself to an organization to help find a cure or to make easier the lives of children and their parents going through what her family went through. In her child’s name. To honor her child’s life. To keep her child’s spirit alive.
But I am a cancer mom. And being a cancer mom means being part of the magic of The Hole in the Wall Gang Camp. It means wearing a dog tag from camp around your neck as a reminder that joy can happen, along with an orange “positivity” bracelet for hope. Appreciating how beautiful your child looks bald and seeing what a great model she would make as she poses for Flashes of Hope and with a monster truck for a fundraising calendar. Being a cancer mom doesn’t mean a shining moment of pride when she earns an all-around gold medal at the state meet or drops 8 seconds in the 100 Fly. It means a long-term appreciation for how she is handling a horrific experience with as much courage and grace as possible. A gradual realization that she has become more much bold and assertive than before. It means gaining the sense that so much of what mattered so deeply before is not at all what really matters. And it means the unfortunate sense that the cancer team is not one you can just quit when you have had enough. I am going to be a cancer mom for a long, long time. God willing.
Author’s Note: This essay was written in October 2013, after my daughter had begun the maintenance phase of a treatment that lasted 857 days. She completed treatment this spring and is doing well. I now find myself engaging more with other cancer parents than I thought I would and better understand the incentive to create community (but am grateful not to have needed it). I still follow stories I would be better off not knowing and sometimes google, fruitlessly, for information that would bring me certainty about my child’s future.
Kristen Brookes, a teacher and writer, lives in New England with her husband, daughter, and puppy. In a previous existence, she published articles in early modern studies, on topics such as race and tobacco and gender, sexuality, and colonization. Kristen is currently working on a collection of essays about her experiences as a “cancer mom,” an identity from which she wishes to flee.
Photo credit: Team Photo.