Mia Baumgartner, chaplain at the Seattle Cancer Care Alliance.
Facing metastatic breast cancer can be frightening and isolating, a time when you find yourself questioning your religious or spiritual beliefs or feeling emotionally distraught and disconnected.
For the last 13 years, Mia Baumgartner has been a chaplain with the Seattle Cancer Care Alliance (SCCA), listening attentively and sitting with people who are facing serious illnesses like metastatic breast cancer, also known as stage IV or advanced breast cancer. Some metastatic breast cancer patients live for years if treatment stabilizes the disease, but eventually many patients run out of treatment options.
Being forced to face your own mortality often leads to deeper questions as well as fear and anxiety — the kind that wakes you up in a cold sweat in the middle of the night. Some people may feel lost in the dark, unsure how to process or handle their jumble of emotions. Baumgartner calls these spiritual pain points, and she sees her job as helping patients untangle their feelings and process what they are going through. By talking about their experiences, doing so takes the power out of overwhelming feelings.
“We give [people] the space and safety to say these things out loud,” Baumgartner says.
Here are four ways that you can take care of your spiritual and emotional needs when you have metastatic breast cancer, with one extra tip to share with caregivers.
1. Be aware of the full spiritual, emotional impact of having advanced cancer
SCCA screens patients for spiritual, religious, and existential distress, which may include feelings of hopelessness, a sense of abandonment, feelings of being punished, or anger toward God or the universe. Some people might feel detached from their religious community or feel that those around them have stopped connecting with them when they have metastatic disease, Baumgartner says.
Sometimes people are prompted to question their whole philosophy of life as their views or feelings begin to shift, and that can also be distressing, she says.
“We help people reframe and process this experience in an emotional and spiritual way,” Baumgartner says.
Those with metastatic breast cancer sometimes deal with philosophical questions. They may question how they could possibly have advanced cancer, especially if they feel fine physically. And they may grapple with what it means to have a metastatic breast cancer diagnosis and how that changes their sense of identity, purpose, or sense of meaning, Baumgartner says.
2. Feelings of loss and concern about the afterlife are normal
Women who have metastatic breast cancer may be dealing with anticipatory grief — or the feeling of impending loss — and those emotions can be especially strong if they have young children and are worried about leaving them, Baumgartner says.
Patients may wonder when and how they should tell their children about their diagnoses, she says. Sometimes Baumgartner and the patient practice having those conversations, so the patient feels more comfortable with what to say and how to have an age-appropriate conversation.
Processing these emotions sometimes involves showing people how to compartmentalize what they are going through, Baumgartner says.
She recommends making an appointment with yourself once a week to delve more deeply into the emotions you are experiencing. Some patients will do this through journaling, but it also could be done through having conversations or meeting with a counselor or chaplain.
“It’s crippling and paralyzing to be constantly thinking about your mortality,” Baumgartner says. “But it’s important to take time to talk about these matters. Some people may want to talk about the afterlife, the wonderment of it. What they think about it or what they don’t think about it.”
3. Focus on what you can control
As part of dealing with feelings of loss, Baumgartner often talks with patients about living in the moment and learning what can be changed and what can’t.
“We work on figuring out what you can control and putting your energy there,” she said. That can mean letting go of grand plans you once had, and focusing on things that are more attainable but also fulfilling to you.
She knew one metastatic breast cancer patient who found it helpful to plan one special activity a month. It was something she could look forward to doing with her family, like a bucket list, but all events or activities were local and easier to do than bigger trips elsewhere.
4. Be honest about what you need
Many patients grapple with how to interact and communicate their needs with those around them, Baumgartner said. This is especially true in relaying how much or how little patients may feel like discussing their cancer with family and friends.
Some people find it helpful to put information about their health and treatments on a blog or site like CaringBridge, so if family and friends have questions, they can be referred there.
5. If you’re a caregiver, take time for yourself
Caregivers also need to remember to take care of themselves. They are more apt to skip their own doctors’ appointments because they are so busy shuttling their loved ones to appointments. They are also less likely to make time to connect with a support network, Baumgartner says.
Oftentimes the caregiver for metastatic breast cancer patients is a spouse who is trying to juggle daily tasks, family obligations, and work. He or she may not be taking time to really talk to anyone about their own emotions or what they are going through, according to Baumgartner.
“Sometimes caregivers are trying so hard to be strong for the other person, they may not say what their fears are," she says. “But you need to be able to be real with someone, and that may mean finding a counselor to help get through this.”