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Debbie Legault is the mother of a young woman who was diagnosed with breast cancer at 27. Debbie chose to share the experience of being a full-time caregiver to her daughter during treatment in a blog called “Mom … It’s Cancer” and published the compilation of those thoughts in book format when active treatment was completed. Legault soon realized that the end of treatment was actually just another beginning and continues to write about the realities of survivorship both from her perspective as a caregiver and from her daughter’s point of view.
As a mom, I have the “worry gene,” though it got much worse when my daughter was diagnosed with cancer.
When I had children, something happened to me that I can’t change back. I love being a mother and I wouldn’t give it up for anything, but there is this one design flaw that I really wish I had even a little bit of control over. Something that was dormant but got activated the moment I heard that first cry. It comes with the territory, and I used to find it reasonable to manage, but since Adrienne was diagnosed with breast cancer at 27 it seems to have gone up a lot of notches and I keep looking for a switch or something that would let me dial it down.
I call it the “worry gene.”
I’m sure there is no scientific test that can demonstrate that it exists but ask most mothers out there if worrying about their children slips into the conscious and unconscious mind all…the…time and I’m sure they’ll smile and nod and say, “yup, that’s my life now.”
There were so many things to worry about when Adrienne was going through cancer treatment. The side effects, the danger of infection, the hope for funding for very expensive medications since she wasn’t insured. And the biggest one of all was will it work? At the end of all of this pain and misery will my baby be able to walk away with her life?
The grand news is that she did. She is NED-T, no evidence of disease — today. She’s in survivorship and I am beyond grateful for that.
The not-so-grand news is that once cancer triggered my worry gene into overdrive, no amount of mindfulness or meditation or self-talk seems to be able to pull it back. I learned so many things that I wish I had never had to learn, I saw statistics that stopped my heart for a second, I connected with the cancer community and see updates regularly that speak to how often breast cancer goes from early stage to recurring as stage 4. I know beyond any shadow of a doubt how big a role luck played in how things turned out.
My girl right now is one of the lucky ones, but what I live with in survivorship is a realistic understanding that the problem with luck is that it can run out.
She recently had an MRI, and I went with her to her regular recheck appointment with the surgeon to get the results. As I stood in his office, the miracle baby we were gifted with in February sleeping on my shoulder while Adrienne was in the exam room, it took all I had not to run. My stomach was upside down, the ringing in my ears back in all its hateful stress-induced glory. I hadn’t slept in three days, tossing and turning with the helplessness dreams coming over and over again. And there it was, the results sitting on an open file folder on his desk.
I couldn’t bring myself to look.
He came into the office as Adrienne was getting dressed and came over to marvel at the little one then when Adrienne came in he sat down and looked down at the results. “Your MRI looks good. It’s a BIRADS 3, but with your history that’s as good as you’re ever going to get.”
Her luck held one more time.
This is what it is like to mother a child in survivorship. It’s a never-ending struggle of trying to let it go and enjoy the now knowing that you’re going to be standing on the edge of the abyss for the rest of your life. I’m not always looking down. There are times when a layer of fluffy cotton candy joy floats over the abyss and it disappears for a while. There is laughter and love and warmth and perfection, and then her back will twinge, or she’ll have a headache, or a new study will come out and there it is again, waiting to swallow me up.
This is something that, other than on this page, I choose to keep to myself because no one else is me. I can’t expect that the depth of my irrational thought processes could be understood even if I had the words to describe them. In survivorship I have become an actress of award-winning distinction and only my dreams know the truth.
And still, I wouldn’t trade being her mother for any other role I could be offered. Irrationality be damned.
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