Dealing With Uncertainty From Metastatic Breast Cancer

I was diagnosed with advanced breast cancer in March 2012.

It wasn't the first crisis in my life, but it was a major life disrupter. Naturally, I was afraid. I was afraid of how the cancer would affect my family and friends. I was afraid of recurrence. I was afraid of the stigma of cancer and did not want to be labeled or treated differently. I was afraid I might die. Many friends called me resilient, as I endured 9 months of disruption, from harsh chemo treatment to hair loss, nausea, fatigue, neuropathy, chemo-brain and a handful of other side effects.

I focused on how life would improve once chemo, surgery and radiation treatments ended— and I had faith I would survive. Now we are living in a world with COVID-19: hunkered down, riding an emotional roller-coaster, dealing with grief from the losses and trying to be patient for the quarantine period to come to an end. The disruption reminds me of the way I felt during cancer treatment 8 years ago. There is much we don't know, can't control, the uncertainty creates anxiety, and we just want to feel "normal".

May 17th was the 4th anniversary of my diagnosis of metastatic breast cancer. Not only did I learn the cancer had spread to my bones, but the largest tumor had crushed two vertebrae in my thoracic spine pushing into my spinal cord and putting me at risk of paralysis. I had no clue what I was in for but prayed I would not end up paralyzed. Within days, complex surgery removed the largest tumor and replaced two vertebrae with a metal box and rods. I spent a week in the hospital followed by three weeks in rehab for pain management, occupational therapy, speech therapy and physical therapy while undergoing radiation and beginning chemotherapy. I lived in a neck and body brace for an additional 2 months, completely disabled, depending on assistance for just about every movement.

In the summer of 2016 I learned what it was like to lose complete control of my life. I took a huge leap into the reality of living with uncertainty. Would I be able to walk, talk, bathe, cook, clean or even drive again? Would nausea, fatigue and pain ever go away? So many unknowns, but I had hope, support and the determination to improve and go on living— whatever the new normal would bring.

Living with metastatic cancer is different. I've spent plenty of time lamenting over "what I can no longer do". This anticipatory grief takes many forms and can be tough! I've learned to live with uncertainty and that the stress of cancer is normal. What is certain in my life is that my cancer cannot be cured. When I choose to focus on what is certain, I end up in negative space— that anxiety of not knowing when my end will come. How I can be hopeful at a time when my world continues to unwind?

Hope is flexible.

I am open to various possibilities, yet know the need to change outcomes as my reality changes.

I am realistic about my changing prognosis, incorporating the gray areas of living with uncertainty into my daily life.

I make time for prayer, meditation and reflection. When I can't go out, I can go "in"!

I focus daily on what I CAN do— and what I am grateful for.

I stay connected and focus on the relationships in my life. I know my chances of survival have been increased because I am surrounded by family and friends whom I love and who support me.

Living with metastatic cancer has prepared me in dealing with the fears and grief that are associated with uncertainty. I have a competent and integrated health care team that helps me understand my options so I can make data-based decisions regarding my treatment plan. Clarity helps mitigate my fears, and hope emerges. HOPE is the key to living with a terminal illness. I can hope there will be another treatment option that will slow down progression, that I will be able to tolerate the side effects, that my quality of life will not be further compromised, and that I will have more time. I still dream about and have hopes for the future but try to focus on "the now" the time I have.

I have learned that expression beats depression. When I express myself, creating, writing, singing, laughing or crying, I can suppress the fears and find some joy or meaning each day. Despite the confinement, big changes to our daily lives, and fear of what tomorrow may bring, I have much to be grateful for and try to make the most of each day. I have HOPE!