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Letters From Cancerland: Dress Rehearsal
By: April Nelson; Published: January 23, 2019 @ 8:11 pm | Comments Disabled
“Would you like to meet with our palliative care team?”
I didn’t even hesitate. “Yes.”
A meeting was arranged for the next day. I had a choice of a meeting by phone or in person. That was easy: in person, please.
Before you jump to conclusions, this meeting was not for my palliative care. Rather, it was for my Aunt Ginger, who had been in an area hospital for 10 days, not recovering from the surgical repair of a broken hip.
It was an enlightening and, ultimately, uplifting experience.
The meeting with the palliative care team was held in a small room at the hospital. Two staff members, a social worker and a doctor, made up the team. Initially, the two staffers carefully broached the topic of palliative care. Did I understand that this would change the treatment my aunt would receive? Yes. Did I understand that active treatment of the underlying medical problem (the broken hip) and any subsequent issues that may develop (pneumonia) would stop? Yes. I then added that I was not uncomfortable discussing end of life and death, and that we could talk openly about what some consider to be difficult topics (such as dying and death).
I could feel the room relax.
Then the doctor asked the question that fully opened up the discussion. “Do you know what your aunt’s wishes are or might be?”
Absolutely.
My Aunt Ginger and I were very close all our lives, starting from my early childhood. As she aged and grew more dependent, I became her mainstay, both legally and personally. (She had never had children, and I was among the youngest of the many nieces and nephews.) I saw her often and we talked at length about many, many topics, including her thoughts and wishes concerning end of life.
So when the palliative care doctor broached the question, of course I could answer it. I explained that she would not want medical intervention once she was moving past the point of no return. Comfort care was important to her, I added.
Both the social worker and doctor quietly took notes as I spoke. One of them asked me what kinds of things Aunt Ginger had said that made me feel she was committed to this position.
I had several examples. When she had a lumpectomy for breast cancer several years ago, while she was still very competent, she refused the strongly recommended radiation treatment afterwards. “I don’t need to put my body through that at my age,” she declared. And two years ago, when a hospital stay revealed a small tumor in her lungs, she was unwilling to follow up with a pulmonary specialist as was ordered by the hospital.
I explained to the palliative care team that she and I had discussed the pulmonary recommendation in small bits, as her dementia was advancing, and I wanted to make sure she had some grasp of the situation. Oh, Ginger grasped it right away. “That could be cancer, couldn’t it?” I told her it could be. “And how would they find out?” With a biopsy, most likely. “I’m not going to go through a biopsy,’ she said, adding, “Even if it is cancer, I’m not treating it and I want you to tell them that.”
After I told them these discussions, we were all quiet for a moment. The social worker said, gently, “You and your aunt must have had a wonderful relationship.” I nodded, tears crowding my eyes. Then the doctor said, after a small pause, “I’m so glad you two had this discussion so openly. We have no doubt that palliative care is what your aunt wanted and no doubt that you understand what it means and are in agreement with it.” The team, the social worker explained, would put the orders in place immediately.
I left the hospital that morning with a sense of relief and peace.
That was on a Friday. Two days later, I took a call from a hospice doctor at the hospital: my aunt was dying. Maybe a few hours, maybe a day or so, but she was dying. We were in the middle of the last holiday concert for our symphony; by the time we struck the stage and drove the 30+ minutes south to Columbus, Ginger had died. It had just happened: my husband Warren and I were the ones who notified the nurses. After they confirmed the obvious, they left us all alone. We sat with Ginger in the silence of the room, Warren standing close by while I held her hand, still warm but cooling. It was a silent, peaceful goodbye.
Besides being the executive director of our local symphony, Warren is also a classical musician, playing with our orchestra as timpanist and with another regional ensemble as percussionist. Rehearsals have been a part of his life since his college days decades ago. As his wife, I too have learned the rhythm and pace of the rehearsal schedule. With our symphony, it is typically three rehearsals, then a dress rehearsal, then the performance. While all four of the rehearsals are working rehearsals, it is the dress where our gifted conductor takes the musicians through the full performance, stopping only to tweak or work out problematic bits, but primarily letting the program unfold and swell.
Dress rehearsals are always intense and often emotional.
And that is how I see Ginger’s dying days and death as: a dress rehearsal for what Warren and I will be going through, probably sooner rather than later. (Look, at 14 years since my multiple myeloma diagnosis, I have no illusions about longevity.) Aunt Ginger's ending days have opened up a lot of quiet, emotional discussion between me and Warren. He knows my end-of-life wishes. He knows how I feel about stopping medical treatment, refusing extraordinary intervention, palliative care, and hospice care. He knows me as deeply and surely as I knew my Aunt Ginger. We both feel the depth of love and gratitude and impending loss between us. There are moments where we both fall silent, holding hands or touching shoulders, blinking back tears, and taking deep breaths before turning to other tasks at hand. It is indeed our dress rehearsal.
Aunt Ginger lived to be 89, and most of that time, except for the last two weeks, her life was full and complete. She would often say, in her last months, that she had lived a good life.
I hope for nothing less.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].
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