Right now, I’m at as good a place as one can be with metastatic breast cancer: I’m dancing with NED.
Who is NED, you ask? Let me explain. NED stands for No Evidence of Disease, which means that when they run a PET scan of my body and an MRI of my brain, they can’t see any tumors. Does this mean I’m cured? No. Right now, there is no cure for metastatic cancers–there is only treatment that keeps us alive as long as possible.
Somewhere in my body, there are cancer cells trying to learn how to overcome the treatment I’m on. Cancer is smart and sneaky, and someday it’ll figure out how to beat this drug, and new tumors will develop. But for now, the drug is keeping that cancer at bay, and so I keep on dancing with NED for as long as possible. I’m hoping what we’re dancing to is the equivalent of a Wagner’s Ring Cycle, rather than a 3-minute pop song, but there’s no way of knowing.
More importantly, what’s it like having an incurable cancer that doesn’t appear on scans? Does this mean I go back to my old life, to working full time and chasing two kids? Alas, no. You see, the treatments that keep me alive also come with pretty strong side effects. I’m lucky to be on an oral chemotherapy drug called capecitabine, which comes with fewer side effects than IV chemo, but it still leaves me seriously fatigued. People hear that word, fatigued, and they think it just means I’m kind of tired. But no, that’s not what fatigue is. It’s being too exhausted to even think about getting out of bed. It’s being too tired to be able to think clearly. It’s pretty hard to hold down a job when you’re living with fatigue. I know people who do it, and I think they’re superheroes, because I just can’t.
In addition, there are a lot of doctor appointments when you have an incurable cancer. For me, that includes monthly blood draws and check ins with my oncologist, brain MRIs and PET scans, counseling sessions, support groups, appointments with palliative care to help with those side effects…not to mention, learning as much as I can about my disease and the research on the horizon, so when capecitabine stops working, I feel prepared to choose the next treatment. Imagine doing all that when you’re fatigued, and you can see why I spend a lot of time in bed.
Don’t get me wrong, I’m over-the-moon thrilled about dancing with NED. Like I said, this is as good as it gets for metastatic patients. But it’s still not an easy life. That’s why I’m so passionate about research–because I know it has the potential to make this life easier, and longer, for me and for all metastatic patients. I hope that the work that SCCA and Fred Hutchinson Cancer Research Center are doing to understand and halt metastasis will bear fruit in time to save my life, before my dance with NED comes to an end.
Beth Caldwell is a blogger who tweets as @CultPerfectMoms. She is an activist, former federal civil rights attorney, lifelong Seattleite and a wife and mom to two fabulous children. This is her second blog on living with metastatic breast cancer. Read her first story, ” Diagnosis like mine: Love, support and living with metastatic breast cancer,” here.