Time, Dia de Muertos and Living with Advanced Cancer

Around daylight savings time, I always remember a fascinating talk that was given to the medical residents and nursing staff when I was working at the University of Colorado. Deanna, a curandera, was there to inform us about her role, as a curandera and a mental health practitioner, in her community and what she did with her years of training and apprenticeship. She started the conversation with, “Before you rush to judge me, and what I am going to say, I want you to think about a culture that takes an hour from the top of the day and moves it to the end of the day and thinks the day is longer.” Thus, ideally, many in the audience were open to expanding their perceptions, more open to understanding her work and how situations, language and culture influence our perceptions and so much of our lives.

Most would agree that in the United States we have a very linear perspective of time. The Greeks, who utilized two different words for time, would refer to this as Chronos or quantative, structured time… the clock ticking… keeping your schedule, organizing your day, time marches on, running out of time. But the Greeks also had a second word, Kairos, which was a different concept of time. Kairos is time that has a sense of qualitative significance, of “being in the moment.”  One can be lost in the moment of time, can be open to receive what is in that moment and what it offers, and know that some moments in time are opportunities for transformation. Some Native Peoples believe that time is circular, more like the sea, tides come and go and there is a rhythm and a connection to other elements including the moon. Many of us have experienced a special time and then just a week or later from that time have a feeling as if it occurred so long ago!

“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
- J.R.R. Tolkien, The Fellowship of the Ring

I still feel the benefit of that lecture from all those years ago and know too, that as I try to learn a new language and live in a new culture, I feel fortunate to realize the there are many ways of “seeing.”

Some of you might be familiar with the tradition in Mexico of celebrating Dia de Muertos.  It falls along the same days as Halloween, All Saints Day and All Souls Day but is really quite different. To some, the riot of skeletons dressed in fancy outfits, the faces of young and old painted like Catrinas and the fiestas might seem strange. Similar to the early origins of Halloween (Festival of Samhain), there is the thought that the “barrier between the worlds gets really thin” at this time of year, and we are afforded a time to be close to those that have passed to the other world. 

What I see, as a foreigner being in Mexico, is the recognition of death as a human experience. I see the celebration as honoring the cherished moments spent with those who have gone before and recalling those special memories. I see the ritual of acknowledging with gifts and laughter and yes, even special bread, that those loved ones are always part of our community, part of the shaping of who we are, and they are not forgotten. There is a celebration of those bonds, a celebration of those gone before with offerings of what they enjoyed - good food, loving people, laughter, music, beauty. Yes, in many ways it may be mocking death but it is also reminding us to live as fully as possible and practicing not to be too afraid of something that inevitably happens.

A painter, a skier, and a miner looking at a mountain from the same side will see different mountains.
- Thanissaro Bhikkhu, The Paradox of Becoming

So what do perceptions of time and Dia de Muertos have to do with living with advanced cancer?

I think that anyone who has experienced a diagnosis of a potentially terminal illness will tell you that yes, their perception of time has been altered. For some it may include anxiety about how much time they have. Some might find themselves grieving a future they thought was theirs. I have worked with many people facing and living with metastatic disease and know that for those individuals and their families, time can take on a whole new way of thinking, of being. I know that each person, each couple, each family is challenged to navigate this time with their own sense of what is important. I know there is not enough support for those living with Stage IV disease. I know that in our culture there is a hesitancy to talk much about what metastatic means or about the hardships that one faces after cancer and when living with advanced disease. We are hesitant to talk about death. We are hesitant to talk about what people want as they see their time shortening. I do know that we do not provide enough support for the men and women living with advanced cancer. We do not provide enough support for their loved ones. We do not talk about living with advanced cancer. We steer away from the hard parts of this story. Fortunately, thanks to advances in medicine, as well as many integrative therapies, some individuals live for years, even decades with advanced cancer. It is a time of striving to live fully but often with the Sword of Damocles overhead. For many there is a sense of isolation, sometimes fear, sometimes anxiety, and most often uncertainty. One might be hesitant to talk about what they are thinking about or going through for fear of upsetting others or for not being positive enough. And of course, there is always the crazy things that people might say to you! Yes, it is a heavy, sometimes scary and dark topic. How might we approach this difficult topic with more openness? Is humor helpful? Might we be able to shift our perspective a bit?

Supportive care and palliative care are making progress in challenging health care providers to be more aware of these needs and encouraging them to have conversations. But why not provide more space for people to discuss their concerns, their fears, their desires, their wishes long before they are talking with their health care team about potential lack of medical options and changing goals of care? For a fascinating way of getting the conversation about metastatic disease started check out Nalie Agustin.

Fortunately, social media provides a beacon for many when it comes to support for cancer.  I follow three young women who continue to teach me about holding “all of time” as important, not being afraid to talk about the vulnerabilities and the realities of living with advanced cancer, the importance of community, the importance of knowing what is important in your life and the importance of pursuing those dreams. They play, they laugh, they adventure into the areas important to them… with relish! They also share their fears and vulnerabilities. Despite how “their time” will play out, they are fully committed to creating a sense of significance in their moments... and fortunately are willing to share with all of us.

Please take a moment to check out their blogs and Instagram post and please do share with any one that you think might be interested, and don’t forget your health care providers! I am so thankful for the wisdom of these women!

Nalie Agustin   
Read her recent blog post about time
Instagram @nalieagustin   

Ada Osoy
Read about her on ESPNW here
Instagram @nanuschas 

Brenna Murphey
Blog: A Beautiful Life
Instagram @brennamurphey 

Wishing you all lots of quality time, both to get the things done you dream to do and to experience those magical moments in life, humor to help with the darkness and enjoyed in the light, and lots of love, support, curiosity and connection.

With love,
Liz

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