I received a diagnosis of invasive breast cancer six years ago, two weeks before I was due to go on a much anticipated 2 1/2 week trip with William and Natalie. I am so glad my surgeon realized that I not only wanted to still go on the trip, but that I needed to go. She realized I needed to feel emotionally prepared and at peace about having surgery. It also didn’t hurt that I had found a medical reason in my research (revealed below) that made sense to her.
I thought back to those emotional weeks in my life while reading an article in the New York Times this week about breast surgeon Dr. Laura Esserman’s thoughtful approach to care. Despite many thoughtful moments in my own care, there were more than a few times when I felt like a car being serviced. I absolutely love that Dr. Esserman sings to her patients! It made me stop and consider which song I would have asked her to sing for me in the operating room.
I think “This Little Light of Mine” — This light light of mine I’m gonna let it shine…
You may read the article about Dr. Esserman here: http://www.nytimes.com/2015/09/29/health/a-breast-cancer-surgeon-who-keeps-challenging-the-status-quo.html?smprod=nytcore-ipad&smid=nytcore-ipad-share&_r=1
Here’s my story:
The early packer in the family, my bag was zipped and ready to go on August 3rd (a full four weeks before our departure date) when I was scheduled for a breast ultrasound. I was not too concerned when I had found a dense area in my breast below my nipple, which when held between my thumb and index finger, I could move from side to side. My doctor was not too concerned either, but recommended an ultrasound due to a family history of breast cancer.
The radiologist first skimmed the imaging wand over the dense tissue and explained, “This is what we call a ridge. It’s fine.” The wand danced around the perimeters of the ridge. “But…” she said, as the wand paused on one side of the ridge, “I see something here…” She moved the wand to the other side and said “…and here that I would like to biopsy on Thursday.”
“Thursday?” I asked, trying not to panic. “You mean this week?”
William and Natalie had accompanied me to the ultrasound and were in the waiting room. I didn’t want to worry William or frighten Natalie. I took a deep breath before stepping out to meet them.
In the most normal voice I could conjure up, I said, “The doctor wants me to have a biopsy to check two tiny masses.”
“When?” asked William.
“Day after tomorrow?”
“She said there’s a 50% chance they’re fine.” This time my voice quivered. Natalie’s hand went to my arm and rubbed gently. William took my hand into his.
Over the next ten days, in the days before and after the biopsy, I traveled between two extremes: terror and calm. Most often, calm visited me as I read next to Natalie before bed. It felt like deep contentment and luck, for I lived with two people I liked and trusted so much. This calmness was a lovely feeling, which I tried to enjoy for as long it lasted. When I was terrified, I tried to reassure myself with hope. Hope that the cells wouldn’t be cancerous. Hope that if they were, they wouldn’t be aggressive. Hope that I would live to be an old lady. Hope. Hope is the thing with feathers that perches in the soul… and was making my heart anxious with the possibility of its disappointment.
The decisions one makes at such a time can be unexpected. I chose not to call my immediate family because I knew I didn’t have the energy to answer their questions, calm their worries, or respond to their emotions. I didn’t want a commotion that would use up my energy. I knew I needed to conserve my strength, and that I couldn’t afford to spill even a pinch of what felt like my teaspoon of courage.
Tissue samples were taken from the two tiny masses through a needle core biopsy two days later. Six days later, I received a call from the office of my primary care doctor at UCLA. The nurse who called wanted to arrange a time for me to come in to the doctor’s office. I had a sinking feeling that the cells I had hoped were harmless were not, but I made the first of many decisions that helped me feel in charge of my own journey. I did not want to hear the news in a sterile office. I wanted to be at home in my kitchen with a cup of tea. I told the nurse that I’d prefer a phone call from my doctor. It took five hours and a few phone calls before I was able to convince my doctor that all patients are not the same and that this particular patient wanted to be in her safe and cozy home to hear news I already knew was not good.
Indeed, the two tiny masses were cancerous. By then, the knowledge didn’t seem as terrible as the anticipation had been. All I knew was that I was being forced to go on a journey I had not chosen. The itinerary for our trip to Boston and England was on my desk. All of the destinations were clearly plotted out, along with flight details, train stations, hotel addresses, and our top-priority museums. I did not yet know the details of the breast cancer journey. I didn’t know the type of surgery I was facing — lumpectomy or mastectomy — and whether I would have to go through chemotherapy or radiation treatment. Genetic testing and an MRI would still need to be performed before more was known.
There was one piece of knowledge I had that I clung onto like a life raft. From the research I had done, I had learned that it could be beneficial to time breast surgery for the luteal phase of the menstrual cycle, that is, the second half of the cycle. Although the research results are not conclusive, there was some evidence that the recurrence rate was lower if surgery is performed during that time, when progesterone is dominant over estrogen. Careful study of the calendar led me to a make a decision that brought me tremendous peace of mind. My next luteal phase would be four days after our return home. No matter what we were facing on the unexpected journey, we were going to go on our planned journey.
And in the ancient stone circle of Avebury, I felt myself receive the dose of hope and courage I needed for the unexpected journey I was about to take.