There was nothing fun about getting chemo. The anticipatory anxiety before the first infusion, not knowing what to expect or how I would feel. Being stuck with needles to access a working vein. The burn—or the chill—as the infusions began. The dizzy blankness as the Benadryl, used to help reduce nausea, hit my brain. The metallic taste of the poison as it seeped through my blood. The steroid burn in my cheeks as my body flushed the adrenalin and poison out. The uneasy feeling in my stomach as my digestive system dealt with the massive die off of cells lining my guts. The growing dread of each subsequent treatment, knowing exactly what to expect.
But there was something freeing about suspending all expectations and yielding to the couch as I did for a few days after each treatment. Of course, most of the expectations were self-imposed. All my life, I have set goals for myself and others around me. Do more, be better, try harder. But while undergoing treatment, I allowed myself to live in my mind for a few days each cycle. Just lying there, looking out the window, maybe reading a page or two, maybe dozing, I was alone in my thoughts for hours at a stretch.
Alone With My Thoughts
That wasn’t always a pretty place to be. Anxiety often sounded like scratchy violins over a steady rumble of drums. Was the treatment working? Would it cure my cancer? What if it came back and I had to do this all over again? But sometimes, not always, but sometimes, in rare moments, the suspension of expectations created a freedom in the long, languid, days of liquid infusion that was like listening to the slow movement of a sonata. The notes themselves were interesting, and I’d have to work to pick out the themes, but boy was it worth it when I did.
Now that I have some distance from it, the themes are easier to see. The first was a recognition of how lucky I am. Not lucky to get cancer, but lucky to live in a time and a place where it could be diagnosed early, where the right medical expertise and technology was readily available, and where I could have a reasonable expectation of a positive outcome. Cancer is ubiquitous, but access to information, care, and hope are not.
This was recently brought home to me when I traveled to Vietnam as part of a team training local clinicians and survivors on how to implement peer mentoring programs to support newly diagnosed patients. Helpful to all cancer patients, peer mentors are especially valuable in under-resourced communities where diagnoses come later, medical care is limited and information about the disease and treatment is hard to come by. And no one is there to ease the panic and fear. The challenges are greater still when the stigma of cancer and the cost of treatment lead patients to take their own lives rather than subject their families to the financial, physical and emotional hardships of the disease.
Luck and Gratitude
So, yes, I am lucky. I live in New York City where we have access to terrific medical care and am privileged enough to afford regular preventative care. The watchful eye of my medical team meant my cancer was not advanced when diagnosed, making treatment easier and a positive outcome more likely.
I am also tremendously grateful. Not only for the circumstances that provided me this good fortune, but for the love and support of friends and family that helped me get through. I have seen people go through it alone, and it’s not pretty. Regardless of your personal strengths, your emotional resiliency, your coping style, cancer causes emotional turmoil. It may be short lived or long lasting. It may be deeply buried or burning on the surface. But it generally begins at a time when one needs to function at the highest level, to make decisions and to manage a project that none of us want to take on. Loving support helps us meet those challenges and reduces anxiety and depression.
So, I am grateful. For my husband whose confidence in me and my recovery never wavered, lending me his strength when I had none of my own. For my daughter for the hours she sat with me on the couch, making me laugh and reminding me of a world beyond cancer. For my son, whose long-distance love was as palpable as the hugs he delivered in person. For the family and friends who visited when I had no energy or smile to share, who organized weeks of food delivery, who accompanied me to treatment, who took me on walks, who were patient when I numb, who called and sent loving messages of support. It all made a difference—not just in how I felt that day and how I recovered, but in what I understand today about the world. Kindness and love are such powerful tools of hope and positive change.
Two other themes play out in my cancer sonata as well, echoes of my personality amplified by my experience. Curiosity. I am hungry for knowledge of how people deal with the disease and other traumas in their lives, to understand cancer, it’s causes and it’s cures and our recovery. Why does it happen? How? What can we do to aid healing and prevent recurrence, not just of the disease but of the lasting impacts it leaves in our hearts? And, determination. The drive that kept me running through cancer treatment also propels my desire to ease the way for others. To share the insights and good fortunes, and to incorporate my experience into my life in a healthy and productive way.
As I move further and further from diagnosis and the horrors of that period in my life, I am never far from cancer. It’s not just that I have chosen to focus my life on helping others through the ordeal, but cancer is pervasive. I introduce myself to a new friend and learn she had colon cancer. On a plane, I chat with my seatmate and hear the story of his mother’s breast cancer. I exchange business cards with a colleague and learn her husband died of brain cancer. Wherever I am, I am in the world of cancer, and that is the theme of the soulful clarinet of my sonata.
I can’t write a sonata, but if I were Brahms, my cancer sonata would sound like this.