Four years ago, in March 2013, when I discovered I had breast cancer, that is, the early days of that diagnosis, my doctor referred to the time as a "bump in the road." She implied that after a lumpectomy, I would return to my tidy little life and never look back. That was before they found three lumps, and before the MRI lit up the cancer that had spread to two of my lymph nodes under my right arm. This was also before my ONCO score of 27 (30 being high) warned my cancer was aggressive and had a high probability of spreading. But even after all of that, I continued to hold fast to the fact that it was only a "bump in the road."
As I tolerated the difficult treatments that year there was always an end in sight and the headlights of my optimism always seemed to lead me safely home. But now, with my new diagnosis in March, 2017 of Stage 4 Breast Cancer...Metastatic Breast Cancer...Terminal Cancer...Chronic Cancer with no cure (I'm still searching for the term with the least sting) I feel as if I have been left on the side of the road with no map, and only the faint glow from the tiny little battery operated flashlight that hangs from my key chain to guide me. I keep waiting for my eyes to adjust hoping to make out a familiar path home.
I'm trying to learn from my friend, Ann Marie, who has been sightless since birth. When I am with her I am awestruck by the way she navigates the sidewalk as she walks her dog - and with heat-seeking precision picks up the dog's poop. How she moves from room to room in her home gathering photos of her daughter--whom she raised alone--for me to see. And the way she draws upon magical powers when encouraging me to have another cookie--that she herself baked perfectly--because she has somehow, in complete darkness, determined I have only eaten one. How does she do it? What forces does she draw upon? How has she learned to offer her entire body to the dance of living and her full being to the power of trust? All the while living in a blackened world with no chance her eyes will ever in a million years adjust to light.
So, here are some of my observations as I attempt to navigate my own disoriented version of darkness.
First: Don't move the furniture.
One of the reasons I have decided to continue my care at City of Hope in California, where it all began, rather than transfer to a cancer center in Lexington, Kentucky where I now have a home, is because I am trying to avoid change that will disorient me. I know and trust those who care for me at COH, and I'm also familiar with the back hallways and shortcuts across that campus leaving me feeling as if I, like Ann Marie in her home, can almost navigate with my eyes shut.
Second: Clear the path.
I have begun the sometimes painful task of clearing my life of the people, places and things which will cause me to stub my toes. At a time like this it seems more important to surround myself with only that which feels safe and nurtures my soul. I am fortunate to be retired and house sitting an adorable beach house in San Clemente just a few blocks from the ocean. I am treating myself to those things which make me smile, like walks on the beach, croissants filled with chocolate, bouquets of flowers, and as many orchid plants as will fit in my cart from Trader Joe's. I am listening to my inner clock rather than obeying the demands of the fickle numbers on my phone. If it's 2:00 a.m. and I'm awake I'll get up and do the dishes I didn't have the energy to wash the night before. If it's 10:00 a.m. but I feel like a nap, I'm going back to bed. When up before the sun, I'll sit on the patio with a cup of coffee listening for the first excited chatter of the birds. I tend a flower garden, watch movies, read, or talk to friends and family on the phone. I'll give into tears that seem to arrive unannounced, or itch the rashes and hives which hitched a ride on the drugs I'm currently taking.
Third: Observe without sight
Eventually, observing life becomes an experiment for me. So, it's not much of a stretch to pay close attention to my own reactions to my current situation. Initially I cried a lot, then cried some more. I think one of the reasons I cried was because I just didn't want to do this. I didn't want to watch my friends and family suffer. I didn't want to take medication that might extend my life, but wreck its quality. I was also frustrated because I wanted to prepare; to predict and plan for the outcome. I suspected a good way to gather information in order to feel as if I had some control, even though deep down I know I don't, was to join a couple of Facebook groups where members were dealing with Metastatic Breast Cancer, or who were also taking the drugs I take. How were they coping? How could I be of support? I idealized the possibilities of befriending others like myself. But it didn't take long for me to observe I am just too sensitive and don't cope well with sad. Many of these women are young, many are mourning the death of their friends with metastatic disease. Many are in pain or dealing with tremendous side effects from their treatments. Most are anxious out of their heads as they approach the routine scan days. Turns out they don't call it "scanxiety" for nothing. I've also noticed they cling to the Cancer Marker numbers that predict whether or not the drugs are working, and fall into deep despair when the numbers suggest they are not. They all know they are dying, but the numbers will help them predict just how fast that day is approaching. I had hoped gathering up these details would be comforting, but I find it hasn't helped much. At least not yet.
Four: Befriend the darkness
I love the Eckhart Tolle quote, "Whatever the present moment contains, accept it as if you had chosen it." So today I sit in the darkness where the mysteries and the questions reside, alongside my dear friend, Denial. I will be strong until I no longer can be strong. I will have faith until faith betrays me. I will trust until I lose my grip and can only rely on the power of God and the gift of grace to keep me from falling into despair. I recently was reminded that fear and faith both believe in a future that hasn't happened yet. Today I choose faith, for I honestly believe that in the end everything is going to be okay.
Nancy was diagnosed with breast cancer in 2013 after a routine mammogram illuminated a mass and positive lymph nodes. She was treated with a mastectomy, chemo and radiation. In 2017, she learned that her cancer had metastasized to her lung. She began taking two oral drugs, one just approved by the FDA, which successfully carried me to remission. She now lives a full and productive life and feels optimistic that her cancer will be happy sleeping for many years.