The words that I could not bring myself to admit bubbled to the surface: I have been preparing for my mother’s death. I do not want her to leave me without preserving what I can. Even though I know it is an impossible task, I am trying to protect myself against regret.
In October 2018, my mother was diagnosed with ductal carcinoma in situ (DCIS). I tried to mirror my parents’ calm demeanors as they broke the news to my sister and me over a laggy FaceTime video chat. They asked us to kindly hold our questions until the end, as if it was some conference call. They talked through the treatment options methodically, my mom flipping through a gigantic white binder they’d already started containing her medical records and test results.
Polycythemia vera is terminal, but the outlook for patients can be as long as 20 years if caught early and controlled with specific treatments. It felt like just when we had the tumor under control, we were now staring down the long barrel of an incurable disease. It has felt difficult for me to let these sit side by side in my head—“terminal” and “20 years.” Not immediate, but no longer the open-ended kind of life I had envisioned for her.
After 2018, I started flying back to Atlanta more frequently, even if it was just for a weekend.
Recovery simply means a movement toward preferred ways of living one’s life. Based on a conventional medical perspective that you may have...