Living with Metastatic Cancer Means Loss in the Midst of Love

Recently, in the space of about a week, I lost two friends to the same disease I have. One I met in 2017 at the Living Beyond Breast Cancer conference for people living with metastatic breast cancer (MBC). He was the first man I met with MBC and the first time I heard that men get breast cancer. The other I met several years later but it wasn’t until we were both in Utah, also for an MBC event, this one for Theresa’s Research Foundation, that I really spent time with her. We both had a love of the outdoors and physical challenges, though most of our interaction after that was across computer screens as we chatted and worked together on projects for the Patient Centered Dosing Initiative.

Further back—8 years ago—is the first time a good friend of mine with MBC died. I have had a lot of practice with friends’ deaths since then. I once told my therapist, because sometimes you need someone to talk to who will just let you talk, that it felt like my blood was just grief coursing around my body.

I have read a bit about this type of grief, the cumulative grief that happens when losses occur in relatively quick succession or stretch out over time or both, as in the case for me and many friends with cancer. There is research about cumulative grief in health care providers, and its effect on caregivers. But I haven’t found much that addresses what it means when you are living with successive losses of your friends long before the age when that might be expected to happen, especially if you share a diagnosis.

However, I was alive when AIDS tore through New York City, where I lived. I know firsthand that cumulative and layered grief is not something only my community has experienced. There are actions that help ease the burden:

Self-Care is Key

At this point, I have a whole slew of self-care techniques. Ice cream and mindless television rank high for numbing and curling inward. When I am ready to work through what I’m feeling, I turn to writing and anything that gets my body moving. I also try to not deny or push down emotions but that can be a challenge because it isn’t possible, and is probably unhealthy, to always be in a heightened state of grief. As a therapist once asked me when my mental health was plummeting: What helped last time? I try to hear her voice when I feel like it is impossible to move forward.

Step Further into the Community

Following the death of a friend with MBC, my first urge is to back away but opening up to others with the same diagnosis and building stronger bonds can actually be a better choice. It is never too late to join a support group or private Facebook group to express how you are feeling and get/give comfort. Even going on social media and watching videos from people with the same diagnosis can help you see that you are not alone in what you are living and feeling. However, do these only when you are ready, because disease progression and dying are a reality with metastatic cancer.

Honor Memories

Keeping someone’s memory alive does not mean you are stuck in place. In metastatic breast cancer, we sometimes see this in unexpected places, like names of lost friends displayed at Burning Man and memorial efforts at conferences. People who are active advocates living with MBC often say that ongoing losses drives action. That is certainly true for me, working for change while losing friends spurs me with anger and frustration, yes, but also relentless love. Whenever I am asked to speak or write something about MBC, I think of the people who have died and I speak names whenever possible. These people were here, they were loved, and now they are gone.

So, this is in memory of Kirby, who always had time to greet old—and new—friends and gave the warmest hugs, and Amy, who brought her scientist mind and sense of humor into so many MBC lives. Both of them deeply fearless and steadfast and gone too soon.

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