Before I learned about “anticipatory grief,” I learned about a brain cancer called Glioblastoma. In 2022, my husband Tom, the love of my life and my partner of 20 years, was diagnosed with this terminal illness. Glioblastoma has no cure, and now, after 20 months of battling this disease, Tom’s cancer has returned. We were fortunate to have those 20 months, as it could have been as little as six without his successful surgical resection. Tom has done well and continues to do well; he just finished radiation and has started chemotherapy for the second time. We are managing the challenges of eating, swallowing, seizures, and stress.
There had been no obvious warnings before Tom’s collapse on April Fool’s Day. I thought he’d had a stroke, and I knew time mattered as I ran for help. Tom had always been fit and healthy, never ate junk food, and was always active. His fierce independence made it even harder to accept this diagnosis. I have felt anger—not just for Tom but selfishly for myself. Being a caregiver for a loved one with cancer is incredibly difficult. Life revolves around arguing with insurance, negotiating with medical staff, researching what isn’t mentioned, tracking medications and appointments, and constantly monitoring Tom. His consultants often ask me about his well-being, not because Tom isn’t aware, but because I took on the responsibility of caring for him 24 hours a day. I watch for different facial expressions, slurred words, hand weakness, stumbles, and struggles. Tom has become better at admitting how he’s feeling, trusting his medical team—thanks to the surgeon who gave him another shot at life.
We made the most of this chance by traveling to Canada and Alaska, a trip we had planned for years. We were fortunate to have the means and time to make it happen and to make the time we had count. Early in Tom’s diagnosis, I met a man who told me how blessed he was to have five years with his wife after her terminal cancer diagnosis. He said they used the time as a gift, and although I was skeptical then, I now understand what he meant. Despite the daily challenges and the impending hardships, we have been given a gift. We are getting to know each other again in hyperfocus.
Poet Mona Arshi wrote in Coming to Terms, “Death is common but the expectation around how we might grieve makes us feel uncommon.” She described how patients and their loved ones “rehearse their own separate mourning” as they prepare for the inevitable end of a terminal illness. This is anticipatory grief. I’ve read about “good” mourning—doing small things in the right order—versus “bad” mourning involving drugs and alcohol. As someone who wears their emotions openly, I tend towards the alcohol and chocolate side of grief—not sure if that’s good or bad, strong or weak, but it is what it is.
I appreciate friends and family checking in on Tom and me. It lifts our spirits, even if I’m terrible at reciprocating and often don’t feel like talking, or more specifically, flooding the phone with snot and tears. I know some people don’t know what to say, and often, neither do I. I get confused when Tom or others say, “be strong,” because I find it offensive. I’ve given myself permission to weep, and I believe that’s a form of strength. I’ve also given myself permission to be honest about what comes next. This isn’t the same as giving up hope or being negative. Hope remains ever-present.
In a blog I read, Bill Scott wrote, “There came a time when I had to accept ownership for this difficult path before me. All the prayers and concerns of my family and friends helped, but they did not change the reality.” Tom and I have had many positive conversations about death and its logistics—a place I never thought we’d be on that April Fool’s Day. For me, being strong means recognizing my pain and acknowledging that things will never be the same again. It means navigating this journey with as much grace as possible. Scott concluded in his blog, “I decided to stop beating myself up over it, and ‘relax’ into it.” While I can’t say I’m relaxed—that’s a stretch—it’s good to recognize how you’re feeling about the hand you’ve been dealt.
This is our journey, filled with love, hope, and the strength to face each day together.
Debbie Drews
Belgrade, MT
About Meet Hope Head On
Because of the generous support from people like you, the ABTA has given over $35 million for brain tumor research. The ABTA’s campaign, “Meet Hope Head On,” created for our 50th anniversary, is focused on raising $50 million, in part to fund critical brain tumor research. This campaign is vital for continuing the kind of work that led to the recent FDA approval of vorasidenib, a breakthrough treatment for low-grade glioma.
