Since Cassie’s diagnosis, we have frequently used the word “lost” to describe our situation. We’ve both felt lost within our own lives. We’ve been disoriented, unmoored and confused. And we’ve felt really disconnected from the pace, cadence and intensity of activities and interactions that marked our lives pre-Metastatic Breast Cancer.
This sense of being lost has been greatly exacerbated over the past years by Covid and by the pretty sudden and dramatic changes we’ve both made professionally. Cassie has stopped working altogether and Dan has cut his work back by around 90%. While we are both extremely grateful (and recognize how privileged we are) to be working less, and spending more time together, it’s yet another way that our lives have been upended and that we have felt lost.
Sometime last year, Cassie had a challenging but clarifying conversation with her oncologist about why she often feels so bad even though the cancer is stable. The doctor succinctly explained that it’s both because she has late-stage cancer and because she has been on toxic meds for three-plus years. The good news: The meds are working. The bad news: They regularly make Cassie feel like crap. That’s life with MBC. Full stop.
Previously a conversation like this would have sent us reeling, spinning and questioning. “What do you mean there’s nothing we can do to make Cassie feel better — how can that be? Isn’t there something we can try?” This time though, we didn’t go into a tailspin because we knew what we had to do. Slow down. Be even more intentional about our time. Ask for help. Lean into things that bring us joy.
That’s when we came to the realization that we weren’t lost any more. We might not like the place where we find ourselves, but we recognize it and understand better what it means to be here, in this place, with this disease. It can still be pretty disorienting at times since so much is so different for both of us, but it’s no longer unknown. We’ve discovered some sense of footing.
At the same time, we also came to realize (with some help from Dan’s new therapist) that while we might not be lost we are still feeling immense loss. We miss the life we used to have pre-cancer, the things we used to do when Cassie had more energy and the ways we interacted with the broader world. As sad as this all can be, we are coming to realize that we need to allow ourselves to grieve these losses. Let ourselves feel the pain, experience all the seasons as our lives continue to change and not push this form of “living grief” away. Ironically, not feeling lost has actually made it easier for us to access, understand and grieve these losses. That includes our relationship with work that we both found meaningful and the loss of a pace of life that we both loved. Loss but not lost. It’s just one letter’s worth of difference but it’s provided us with a whole lot of perspective.
