treatmentsJust over a year ago, I learned I have a very rare, aggressive form of soft-tissue sarcoma that metastasized after treatment. Phyllodes tumor is so rare that half the oncologists, surgeons and doctors I’ve seen have disagreed about exactly what category of tumor it is, what treatments are available and whether it can even be considered a breast cancer. (The consensus among my oncologists: It is a cancer in the breast but not of the breast.)
Phyllodes tumor is so rare that when I received my diagnosis, all the scientific literature agreed on just one thing: If it metastasizes, the prognosis is “universally fatal within three years.” When the first biopsy showed that that tumor was benign, pathology after surgery revealed it as high-grade malignant and then I faced metastasis within a matter of months, a lot of people seemed surprised that I laughed and joked through the entire experience.
My family had to get used to my dark jokes about my own death and mangled body after surgeries and treat- ments that may or may not work. My oncologists seemed relieved that I could still laugh and look to the future. My primary care provider was concerned that I might not be processing my emotions. My nurses smiled and told me that “attitude is everything.”
Here’s the thing about my diagnosis: Yes, it was shocking and dismaying and daunting at times. But it was also an opportunity to acknowledge the absurdity of life in general and really learn about letting go. It became a wonderful opportunity to remind myself to laugh, because whether I have a week left or three years or, miraculously, even longer, I don’t intend to have that amount of time pass in misery, fear and stress. I intend for my time to be filled with joy and stupid jokes. I intend to see this time as the ultimate lesson in how ridiculous life can be, and I’m going to embrace that. Because let me tell you, life is ridiculous.
In the span of one year, I went from being an athletic dancer and model to having body parts cut out of me and wondering what music I would want played at my funeral. I went from “thank goodness it’s benign” to “oh dang, looks like we’re at ‘universally fatal’ status.” I went from being relieved at finding out AIM chemotherapy — Adriamycin (doxorubicin), ifosfamide, and mesna — was actually working on my metastasis to being told we couldn’t continue chemo because my body wasn’t rebounding fast enough. I went from healing from additional surgery and chemotherapy to finally having a chance to rebuild my life … straight into lockdown for COVID-19.
Did I mention that life is ridiculous? The week my blood counts were finally recovering adequately from chemo and I was about to go back to work, dance and my other activities is the same week that COVID-19 emerged in the United States, in my state, in my region. I went from self-quarantine and wearing a face mask everywhere straight into … self-quarantine and wearing a face mask everywhere.
I like to joke that “A Series of Unfortunate Events” was supposed to be a cute fiction, not an accurate description of my life. When people compliment me that I don’t “look sick,” I joke that it’s because I’m dying on the inside, not the outside. I love jokes and dark humor because while I’m laughing, I know I’m still living.
We can’t control everything that happens to us, but there is one thing we can control: how we react to it. And I intend to laugh. I’m going to laugh in the face of death, and I’m going to laugh as long as I live. We can’t always know when we are going to die, so we might as well smile until it happens.
If we’re really lucky, we might even be smiling when it happens.