No Evidence of Disease, Today
A couple of weeks ago I read a Tweet from someone that said being in remission from cancer is overwhelming and underwhelming at the same time. I haven’t had cancer so I can’t speak from personal experience as to whether or not this description is true from the patient’s perspective. What I can tell you from my experience as the mother of a twenty-something woman with breast cancer is that the emotional context of having my child be in remission totally reflects that up and down, simultaneously calm and terrifying existence that is my life after watching my child go through cancer treatment and survive.
I wasn’t with Adrienne when she first heard she had cancer and I wasn’t there when she went into the doctor’s office to get the results from her first post-treatment MRI. Both of us were in the tank leading up the appointment, full of anxiety waiting for the results. And when it was good news, that there was no cancer to be seen, there was a moment of elation and then… nothing. No dancing naked in the street (which all of my children are grateful for by the way because, well, I’m their Mom and all that). No taking out a full-page ad or climbing to the top of a building and flipping the bird at the cancerverse. Just a moment to take a deep breath and carry on. To carry on being fully aware that there are many more tests and appointments to come to see if the cancer has come back. To be underwhelmed by the knowledge that the beast was still dead.
When I look at Adrienne, sometimes I feel like the responsibility of being in remission must be enormous, especially when we look around breast cancer support groups and websites and see how many young women are living with metastatic disease. There is the underlying sense that she has to do something with the gift of extra time she’s been given, that she owes it to those whose treatment failed them to make it count, REALLY count. That living an ordinary life is no longer her right because living has become a privilege. And as her mother, I feel like I can’t give myself permission to sweat anything, especially the small stuff, because I got to keep my baby when so many others had to say goodbye. That it is left to both of us to view life through a different lens. To be overwhelmed with the weight of all that comes with being one of lucky ones.
There are so many things that I have learned in supporting Adrienne these last few years that make me think that when you’re told you’re in remission, while it’s true that you no longer have cancer, you don’t really NOT have cancer either, because cancer is a never-ending story. It’s like wandering in a sort of emotional wilderness that lies between the old and the new, when you have to come to terms with the fact that the person you were before no longer exists and it’s necessary to figure out what the new version of you is going to look like. How you’re going to manage looking to a future without the youthful certainty you once enjoyed, years that will be full of reminders of what you went through and tests to see if your luck has run out. How you’ll achieve a balance of enthusiasm and realism as you sit in a job interview and contemplate your answer to the question they so often ask: “Where do you see yourself five or ten years from now?”
Before the first post-treatment result came back, I looked up some definitions of remission and, as I was reading them, too many had the word “temporary” in them for me to want that to be in my dictionary of cancer terms. I think it’s why although remission is a much more familiar description in the public sphere, the term most often used by medical professionals dealing with cancer patients is No Evidence of Disease, or NED. I think something needs to be added to that, though, for me to be able to reconcile the reality of all the poking and prodding in Adrienne’s future, for all the stress-filled days and sleepless nights waiting for test results to come back. For helping other people in my life who see my anxiety mount as I play the waiting game understand why I hear the good news and just go on with my day. One that borrows from many programs that offer support to people who are in transition from one life stage to another and are feeling underwhelmed and overwhelmed at the same time.
The word that needs to be added for me is Today. No Evidence of Disease – Today. NED-T. With that word added, I can wake up every morning and say, “She doesn’t have cancer today, and that makes it a wonderful world.” And feel myself take one more step out of the wilderness… while flipping the bird at the cancerverse, of course.
Mother…Grandmother…Librarian…Military Spouse…Caregiver…Family Life Educator…take your pick! Debbie Legault was born in British Columbia, Canada to a former RCAF airman father and a Scottish War Bride mother and has lived in other Canadian provinces, Germany and California. She has been married for 36 years to a Canadian Air Force Veteran and credits him with filling her life with adventure. When Debbie Legault’s children look at family photos they often comment on how many different hairstyles she has had and that pretty much is her story, that her life has taken as many turns and led her down as many paths as her hair has changed! Her latest role is as the author of Mom…It’s Cancer, the story of supporting her 27-year-old daughter as they experienced breast cancer diagnosis and treatment.