Cancer Isn’t Over After You Ring the Bell

Article

A caregiver and mother of a breast cancer survivor explains the common misunderstanding people have when asking how her daughter’s health post-treatment.

Prior to my daughter Adrienne’s diagnosis 2019, I had almost no experience with cancer. There is zero history in my family, so I had no stories of death or survival to pull from as I tried to establish some frame of reference for what supporting someone through a breast cancer experience might look like. Most of my knowledge came from television and movies that had provided some context, but of course scripted life doesn’t come anywhere close to reality. In the majority of those cases, if it was breast cancer, the patient died, and if they lived, we said goodbye to their character as they left the hospital carrying a big bouquet of “I beat cancer” balloons, and off they rode off into the sunset.

There doesn’t seem to be a narrative where you are diagnosed with cancer and neither live the rest of your life not being impacted by the diagnosis or die. There are very few scenarios where you have had cancer, are in remission, but still wake up every day and have to take a pill, deal with side effects or figure out ways to manage the anxiety that comes with every second waiting for the results of tests to see if it’s back.

The most commonly misunderstood part of my experience as a cancer caregiver to my daughter is that once treatment ended, it was over. I cannot fault anyone in my life for looking at me wondering why I can still be brought to my knees in tears when I encounter a trigger and am whiplashed into the past, or when I am filled with anxiety waiting for an MRI report. Before I lived this trauma, I would have wondered the same. I also cannot fault anyone for not understanding that so many aspects of my daughter’s life, and with hers mine, are still informed as a result of a breast cancer diagnosis at 27.

Her life is still full of cancer-related “stuff.” Because she was so young at diagnosis, some of the later-term problems brought on by her treatment are much more likely to be something she will have to face than she if was diagnosed in her 50s or 60s. For example, her radiologist told her that one of the potential long-term problems of radiation treatment in the area of her body she had it in is an increased risk of lung cancer. He jokingly said, “But that’s 20 or 30 years down the road so you don’t need to think too much about that.” In 20 years, my child will not be an old woman facing a secondary cancer. She will be 47. I think maybe that is, indeed, something for her to think about as she plans her life, especially because she dreams of motherhood.

We are coming up to the point that she may be able to go off those once per day pills she’s taking to prevent recurrence and try to have a baby. Prior to chemotherapy my daughter lived inside that pregnancy innocence bubble where she assumed that when she wanted to start a family, she would be able to. Of course, there are a myriad of things that might have presented challenges to her achieving that goal, but none of them meant choosing to have something pumped into her body to save her life that she knew might stop her from becoming a mother. Her oncologist has told her that she gets a year to try, and then back on the ovarian suppression pills she goes. That year will be shrunk to nine months because she needs to wait at least three months before she can try due to the danger to an unborn child posed by the medication she takes to control her hormone output. That is her window. And even if it happens, no one can tell her at this point if her body has been too damaged to carry a baby to term. I cannot imagine being in her shoes.

As I have written before, I am neither a pessimist nor an optimist. I am a realist. I follow the different paths of possibility where they lead so I can think through how I might respond. It’s a self-protective measure I need to have in place because I am now fully aware that it will never be completely over for her as I so much hoped it would when she rang that bell. So if you look at me with tilted-head confusion when you ask how my girl is doing and I say, “She still has a lot she’s dealing with,” please understand that I’m just trying to fill in that gap for you between the absolutes of you die or you don’t. Yes, treatment ended a while ago, but the possibilities in that space between are many.And she lives a lot of them every day.

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