Sandra Kelly
Inspired by a patient
Sandra Kelly talks with Bob Saltz about his care.
When Adam was in the intensive care unit (ICU) and his primary oncologist asked whether he wanted to keep up the fight or be kept comfortable, Adam's response was 'I want both.' It was classic Adam, and we were all able to celebrate that moment with laughter.
These words, which I spoke at Adam Friedman's funeral last March, were greeted with quiet chuckles and smiles. After the service, I hailed a taxi and returned to my work as a nurse practitioner in genitourinary oncology at Dana-Farber.
During the ride, I thought about how far I had journeyed in little more than two years — from a surgical nurse and nurse practitioner in urology at Brigham and Women's Hospital to the whole new world and language of oncology at Dana-Farber.
It was a risky move, but I had reminded myself that in my urology practice, cancer patients were the ones I had most enjoyed caring for. I wondered: Would I miss surgery? As I approached 50, was I too old to learn a new field?
These and many more questions plagued me during the early months of my new career working with patients facing bladder, kidney, prostate, testicular, and other cancers. Interestingly, as I ventured into this field with its strange language, I reached a level of comfort much sooner than I had expected. The skills I brought along from my prior experiences had shortened the learning curve, and I became a resource for colleagues with urology questions on behalf of their patients. This enabled me to turn to them freely with my own questions.
My senior physician colleague, Dr. Philip Kantoff, had eagerly awaited my arrival, orientation, and adjustment to the job. He had a tremendous patient load that he was very much looking forward to sharing.
Adam, along with his wife and parents, was among the first of many patients to be gently shifted to my care. He had testicular cancer and had been a Dana-Farber patient for nearly 10 years. Because he was doing reasonably well then, his needs were more social and psychological than physical.
Adam Friedman
Calming fears
For example, Adam seemed overly concerned with his tumor markers (blood tests that reveal whether or not the cancer is active). Every time he had a head cold, he insisted on chest X-rays or CT scans, and all his labs needed to be done right away.
I had always made a practice of swiftly telephoning patients with lab results because I knew many of them were holding their breath until they heard them. So much depends upon those numbers. My own experience with patients facing chronic, life-threatening problems was limited, however, so I had a lot to learn.
Adam finally relaxed enough to trust that I would order the proper tests and relay the pertinent information to him and the appropriate physician. I think part of that trust came from a growing understanding that I truly cared about him as a person. His quirkiness was endearing. We would often talk by phone about his worries, solving problems together.
When I became a nurse year ago, mentors advised me to avoid becoming too involved with patients and to maintain boundaries. These warnings fell away now. Adam trusted me as a friend and as a caregiver. Before hanging up the telephone, he would quip, "Love ya." Our relationship became part of his therapy, and I practiced what I call "prophylactic telephoning," calling every few days just to check on him. It is still something I try to do when my patients are having a difficult time; it helps them feel someone is watching over them.
About 10 months after Adam became my patient, he relapsed with skyrocketing tumor markers. He returned to his gut-wrenching, platinum-based chemotherapy regimens and was very sick. I would visit him every day at Brigham and Women's Hospital and sit with him, sometimes in silence, sometimes in conversation. He asked me about death and said he was afraid of dying because of the pain involved. I promised him that he wouldn't have pain, and then prayed I would have it within my power to keep my word.
'A community of caring'
Adam lived for 14 more months as a chronically ill patient, unable to enjoy his time with family and friends between treatments because of the disease and the emotional turmoil it caused. Dr. Kantoff struggled with losing a cherished patient. I knew that I had to maintain the equilibrium: caring for the patient, his family, and even the physician during the hard times ahead.
The final chapter was one of silence. Adam's cancer had spread into his chest, and he needed ventilatory assistance in the thoracic ICU at Brigham and Women's. I never dreamed that Adam would be unable to speak his thoughts and fears. It was unnerving, and I was ever conscious of my promise that he would not suffer pain.
Then, several days after we began planning his discharge to rehabilitative care, Adam had several episodes of lowered oxygen concentration in his blood. His family agreed to sign a DNR (Do Not Resuscitate) order, which means we would not revive him should he have a life-threatening event. The ICU staff was supportive and helped keep my promise to Adam. We became a community of caring, and he died quietly, peacefully, and without pain at age 35. A few days later, I was able to celebrate Adam's life with his family and friends, speaking from my perspective at his funeral service.
What nourishes me now, as I continue my work with cancer patients? I remember the words of Dr. Stephen Sallan, a pediatric oncologist [and chief of staff] who addressed my orientation group when I began working at Dana-Farber. He stated simply that our mission was to lighten the burden of cancer on our patients and their families.
When I lose a patient to cancer, my own grief is eased by the memories of warmth and laughter shared during good times and bad. I know that my presence has made a difference, and that knowledge keeps me grounded, strong, and wanting to come back here day after day. I have traveled full circle in my confidence, competence, and willingness to affect the lives of my patients. I am not too old to learn, and I have not for one instant regretted giving my nursing career this new focus.
