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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.
After being my daughter’s caregiver during breast cancer, I now have a different relationship with my body, especially when I feel something different.
When I think of my life before my daughter was diagnosed with breast cancer at age 27, I try to remember how often I thought about cancer. There is no family history of any kind of cancer, so it certainly wasn’t on my mind when I would fill out forms at medical offices as I waited to see the doctor. I imagine it was like a little puff of cloud hovering miles away on the outer edges of my radar.
And now? It’s a hurricane.
I often see comments about how patients with cancer don’t trust their own bodies once cancer has invaded, how every ache or pain or itch shoots the fear meter from zero to Mach 10. I know that my girl’s mind sometimes goes to that dark place until she can investigate or find an alternative reason for the sensation. What I didn’t understand was how what happened to my child would change my relationship with my own body, too.
I was already at an age where cancer screening was a part of my annual checkups. I collect poop on sticks and send them away to labs. I go for mammograms to check for abnormalities. Pap tests (cervical screening) are a lovely yearly occurrence, and my spouse gets his prostate-specific antigen (PSA) levels checked regularly.
In the past when I would go to receive results or check MyChart to see what was up, I expected that all would be clear. I rarely experienced anxiety during the wait from the test to the outcome. Now, before I open an envelope or file or as I am waiting for my doctor to enter the room, my heart races, my ears ring and I feel nausea creeping in because my daughter’s diagnosis has taught me how indiscriminate cancer can be. Being so intimately involved in her life when I was supporting her through the aftermath has taught me things I wish I didn’t have to know.
In The Before, I had an idea formed from watching movies and television shows about what cancer treatment is like. I knew about losing hair. I knew about vomiting and weight loss. In The After, I know that the image I had only scratches the surface of how awful things can actually be. The truth of the matter is it’s not the cancer that scares me. It’s what it would take to give me a chance at life that fills me with dread.
I watched an oncology nurse get dressed in full protective gear before she could infuse a chemotherapy drug into my child’s body because it is so toxic that it can damage the skin if it leaks. My vibrant feel-the-fear-and-do-it-anyway daughter looked at me in tears after four of those treatments and said she didn’t think she could do it anymore. She was given IV antihistamines and steroids to combat a potentially life-threatening reaction to another chemo she was given. It was the same one that caused a loss of sensation in her hands and her feet for a while, and no one knew if it would be permanent.
We watched hopefully when she was on that drug, as her hair returned, for signs that it would grow back all over her head instead of leaving her bald forever as it does with some women. Her skin turned an angry red and blistered in some places from the radiation and she has issues with her teeth that are directly related to treatment. The miracle drug that helps with HER2-positive breast cancer, can also do irreparable damage to the heart and I know of at least one young woman who died from that complication. The only things my daughter had to manage that I wouldn’t have to worry about are the 10-year dance with chemically induced menopause and possible infertility because I am past that stage of life.
I didn’t have cancer, but the experience of being an intimate caregiver to someone who did makes me wonder with every ache, every pain, every itch, whether I will have to endure what people with cancer have to do when they opt to go ahead with treatment. I have an inkling of how much courage it will take for me to do it because I held my daughter’s hand every step of the way but as I often hear patients with cancer say — you can’t know until you know.
All I can do is cross my fingers that I will never find out.
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