Although my daughter’s cancer scans currently show no evidence of disease, I am haunted by the fact that there is always a possibility it could return and uproot our lives yet again.
We’ve been asked to wait a lot in the last two years. Wait to celebrate, or to say goodbye. Wait to enter a store or a restaurant. Wait to travel to see loved ones, or just to have fun. Wait to see the dentist, or the optometrist. Wait to hold that new grandbaby for the first time.
For most of us, it has been an up and down rollercoaster of waiting and hoping for the best.
And I would live the rest of my life experiencing this type of waiting if I could never have to wait to hear the results of tests for recurrence of my daughter’s cancer ever…ever again.
When my daughter was first diagnosed with breast cancer at 27, I had an idea of what her next year would look like, but the reality was much more distressful than I could have anticipated, so I know now what life would be like for her if it came back.
It’s a special kind of purgatory living through those days or weeks waiting for results when she goes for screening. Because her cancer was still regional and not metastatic, she went into treatment with a good enough chance that her cancer would respond, and the medical team threw everything they had at it.
After three surgeries, months of chemo and targeted hormonal therapy and six weeks of radiation, grateful is a totally inadequate word to describe how I feel about her walking away no evidence of disease (NED). But that is today. She is NED today. And every year for the rest of her life they will run tests to see if today has become a woeful tomorrow.
The scariest thing about my daughter’s diagnosis is that if it comes back, she might not be lucky enough to find the lump like she did the first time, because it might have recurred elsewhere. The initial lump was close to the surface of her breast rather than hiding somewhere deeper where it would be more difficult to distinguish from normal breast tissue, so she found it relatively easily while doing a shower self-exam.
I understand that the symptoms of metastatic breast cancer may be different than those of early-stage breast cancer, which is what she had, but not always. And sometimes, there are no symptoms at all. At the end of treatment when I asked her medical oncologist about what she should look for going forward, he just said, “She’ll know because it will be different.” I actually looked at him and said “Well, that’s pretty disheartening.” And he had to agree.
My daughter has annual MRIs to check for local recurrence, but as of now, there is no test to run to see if it has traveled to another area of her body. So she has to wait for symptoms to show up that tell them what to test for. That means that every ache, every itch, every odd thing that happens could be her body telling her that the woeful tomorrow has come. She can go weeks at a time with cancer swept into the corner of the room, time when she forgets just a little bit and lives her life. But unlike a lot of us who can joke about a headache meaning a brain tumor, in her case, it might actually be one.
We don’t tell that joke anymore, by the way.
There are many things about my child’s cancer experience that I hate. The helplessness. The fear. The unfairness of it all. But I think the thing I hate the most is the waiting game we will be living for the rest of our lives.
I practice radical acceptance about this whole thing, which means I have accepted that this is the future, but that doesn’t mean that I have to make friends with it. And since practice makes perfect, when we’re waiting for test results, I have to work at it just a little bit harder and repeat that mantra a lot more forcefully.
“She doesn’t have cancer today. And that makes it a wonderful world.”
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