I’m pretty sure that if I go back through all of my posts since 2018, there are quite a few about loss, about death. Frankly, I don’t have the energy to count them all up, but I know the posts are there because I think about and experience loss a great deal. At no other time in my life have I been surrounded by the experiences of loss this much and the longer I live with Stage IV Metastatic Breast Cancer (MBC), the more I will be.
Right around the beginning of 2023, we lost two women in an MBC support group that I’ve been moderating for the past several years through the 305PinkPack. These are the first deaths from a tight group of women and it has affected all of us in various ways. Each of these women had an impact on all of us, not in the way that they died, but in the way that they lived.
Beth Moran died on January 2, 2023, right after meeting her newest granddaughter. She’d set this birth as a goal to reach and she did, despite feeling pretty miserable. I met Beth in December of 2021 as she experienced progression and was struggling to decide what to do next through LBBC. During our initial conversation, she referenced a support group she’d recently been connected with, not realizing that it was the support group that I moderate. We had a bit of a laugh and then got down to business. Beth’s experiences with her medical team weren’t always the best and she often struggled with side effects; at the same time, she recognized the power of connection and kept showing up to the support group, even when she was calling in from a hospital bed. From the remembrance video linked above, it is clear that Beth’s pride and joy was her family and she often spoke of her husband, children and grandchildren when we got together. From Beth, I learned a lot about grit, setting goals, and to just keep going.
Silke Pfleuger died on December 31, 2022. Just typing those words brings a fresh wave of raw grief. In 2020, soon after the death of my beloved friend, Emily Garnett, I connected with Silke. We were both members of a Facebook group focused on the medication we were both taking at the time and she thought a Frequently Asked Questions (FAQ) document would be a good idea. As we worked on the document together and she needled me to get it done more quickly, our connection blossomed. After Emily died, I really struggled with whether I wanted to develop further relationships with others living with MBC. It was Silke who pulled me back, who reminded me how important it was to connect with others living with MBC. Silke had a variety of passions, from her knitting to drinking good wine to travel to the animals (Skippy and Fred and all their progeny) who loved to eat from her hands, and she shared all of these things with us. We joked about how often Silke called into our support group from various countries as she prioritized her love of travel. From Silke, I learned a lot about adventure (my word for 2023 in her honor) and doing all the things that feed my soul.
Earlier this year during the annual remembrance episode on Our MBC Life, Silke shared how she remembered those we’ve lost in 2022 during the annual Burning Man event, a particular favorite of hers. You can listen to the episode here, Silke’s contribution is about twenty-seven (27) minutes into the forty (40) minute episode. Silke’s advocacy was focused on individuals and everyone who shares about her talks about her texts and emails and messages. She shared of herself so generously and was not shy about telling people what she thought.
I had the opportunity to meet Silke this past October — we spent a lovely day beside the pool with two other friends who are also living with MBC, Janice Cowden and Beth Kulow. It’s still hard to imagine that I only got to spend that one day in her physical presence.
While each person is so individual and has an impact on each of us in the MBC Community in their own way, there are just those people who leave an indelible mark. While Silke wasn’t the one on the big stages at cancer conferences (although she could have been), her impact on so many is wide and deep. As an engineer, Silke wasn’t a huge fan of the “soft sciences;” at the same time, she appreciated the value of connection and always looked for ways to improve the lives of others.
Each time we lose someone else to MBC, after processing as much of the grief as humanly possible, I try to look for lessons. Living with a terminal diagnosis means that death is a rather constant companion and I’d like to think that perhaps we can get better at dealing with it. While the jury is definitely still out on whether one can get “better” at dealing with loss, here are a few nuggets I’ve gathered …
First, develop grief rituals. Given that we often know others in the community best on social media, it is often relatively rare that we’re able to meet in person and/or attend services or memorials. As a result, I think it is key for us to each individually develop ways of remembering and honoring those we’ve lost. For me, other than writing about the losses to process my grief, I have a bowl of rocks with each person’s name written on them. Included in the bowl are gifts or cards or other ways of remembering each person. I haven’t decorated a rock for either Silke or Beth yet. It can take me some time to sit down to do it; and I give myself the grace to do it when I can.
Second, continue to say the names of the people we’ve lost. The annual remembrance episode that OurMBCLife puts together each year is a wonderful way to honor those we’ve lost. The amazing people at GRASP also honor a research advocate in each of their events. Talking about how someone has affected us, how we reach for our phones to connect with them long after they are gone, posting pictures, remembering their birthdays or other important days; all of these things are important to keep acknowledging. While the person we loved is not here physically now, they were and our lives are forever changed from knowing them.
Third, don’t forget the families left behind. The way that each family handles the loss of their family member within the context of their connection others with MBC varies widely. Some families withdraw from the wider community, others embrace it. Whatever a family desires, don’t forget that there are those who care even more about that special person. A truly wonderful initiative is the Kady Haynes Beauty for Ashes project, which provides Christmas gifts for families who have lost a mother to MBC in the west Florida area. Soaring Spirits is an organization that supports partners who are grieving the loss of their special person.
Fourth, don’t should on yourself. Dwelling on opportunities lost or what could have happened may only create more angst and struggle. Between MBC and COVID, there are a lot of people who I wish I could have seen one more time. Wallowing or spending a lot of time thinking about what could have been hasn’t been a good place for my energy. Taking experiences and utilizing them to do better/different next time has been helpful.
Fifth, find the lesson. I learn something new from knowing each of the people I’ve encountered in the MBC Community. Each life and loss teaches me something else whether about what I want to do now or what I can do to prepare my family. There is always something to take from each experience.
However we do this living with loss thing, life has taught me that we all have to do it somehow. I don’t know much for sure. What I do know is that focusing on the way that someone has lived has been a better place to deposit my energy. Yes, we can all learn about the mechanics of death and how planning can help; at the same time, taking the lessons of the life is how we can each carry the legacy of our loved ones forward.
And that’s how I want to be remembered.