It is such a difficult word to think about and talk about, let alone consider for yourself and those you love.
Firefly Sisterhood is incredibly grateful that writer and author Donna DeGracia, MPAS, PA-C, is willing to share her blog about this topic following her own breast cancer diagnosis.
Anyone who has been diagnosed with breast cancer can remember the gut-wrenching moment when the pit of your stomach registered the reality: “I could die!” No matter how quickly we move on from fear, or how skillfully we mask it, it is there, the dark cloud hanging over us.
Sharing the fear
We are not alone in our fear. I called my daughter to give her my biopsy results, but she was in the shower. When she heard my message, she fell to the floor in a puddle of tears and lay there crying, still naked in her bath towel until her young son woke from his nap.
Kelly’s daughter was younger. She seemed to do fine while her mother was going through treatment, but a year later, when Kelly was healthy again, he daughter developed severe anxiety and didn’t even want to go to school.
Dick took care of his wife through her long struggle with breast cancer. Near the end of her life, he couldn’t sleep thinking about her impending death He finally got up and wrote her memorial. Afterwards he could sleep.
A few months after his wife’s death, Dick developed fear surrounding his own health. He learned from his counselor that this type of reaction is common.
All of these stories illustrate the connection we have with our loved ones, so much so that they often have physical reactions to our disease and to the fear that we might die. The sad thing is that most of us never share our fears with those closest to us and they hide theirs from us. We are trying to protect each other, but does it really help or does it block communication and separate us more?
Fear of the unknown is the worst fear. Experts agree that talking through any problem and developing a plan helps dissolve fear. Even when there is little hope of survival, a plan is reassuring. It gives us something positive to focus on, something to do or to hope for. Allowing loved ones to talk about their fears and to be involved in the plan helps them and helps us and helps them process their own feeling. We need their support. Trying to protect them from our fears fails to acknowledge their pain and robs them of the opportunity to support us through ours. Mutual support can be therapeutic for everyone.
A plan can take a lot of different forms. Lisa had stage 4 disease and belonged to a group for metastatic breast cancer. One member of her group discussed her plan to donate her body to the medical school after she died. When she died, her best friend in the group made the decision to donate her body as well. Other group members followed suit. The group found the discussion therapeutic.
When my mother was near the end of her life, I bought her a journal and asked her to write down thoughts, advice, and stories that I could cherish. She never managed to write in the journal, but I do have a hand-written cook book containing some of her favorite recipes. Each time I open that book, see her handwriting, and make one of the recipes, I am transported back to her kitchen.
There is something called a legacy letter that allows a person to leave advice and information for future generations. I have also heard it called an “ethical will” as it sometimes includes rules to live by. What a treasure to leave behind!
Advanced directives are a good way to choose end of life care before it is needed. It allows the individual to direct their care, even down to details like favorite music. It is a gift to family, sparing them difficult decisions when a loved one is dying. It is also very helpful to healthcare providers when faced with difficult choices about medical interventions.
I am reminded of Jeannie who took her beer and her oxygen tank along in the sidecar of her motorcycle when she went fly fishing in the last weeks of her life. She lived fully to the end and her obituary was full of joy. Whether death is eminent or simply a distant fear, we can make the most of whatever time we have. Whether it is a bucket list or just a refusal to be deprived of the joy of living, creating memories should be part of the plan. Even with an excellent prognosis, breast cancer reminds us of what is important in life. We need to live to the fullest extent possible and invite our loved ones not only to join us in celebrating life, but also in sharing our journey. We can cry together, but we can also laugh, play, and grow together.
Donna Sidwell DeGracia is a physician assistant and an educator whose life and work have taken her from distant corners of the globe to intimate conversations about aspects of life that patients may not have shared with anyone else. Sometimes it is her own experiences as a patient, or as one acculturating to a new culture, that give her the insight needed for difficult conversations. As an educator, she is adept at breaking difficult topics into easily understood components. Her writings reflect her experience and perspective as well as the humility of one who has had the honor of walking with others through their pain. She recognizes both the need for and the fragility of hope as well as the difficult task of reestablishing or reconstructing hope that is lost. Her book, Reconstructing Hope, is available for purchase.