Letters From Cancerland: Dress Rehearsal
“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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
That is a beautiful column, April. I am sorry for your loss of your aunt, but by honouring her wishes you gave her the peace she wanted in her last days. I have known three friends from the myeloma world who died in hospice now. I was too late to visit each time, as a friend. I think that many patients use that option when all else has failed medically. They may not literally refuse medication, but there may be no more medical options available, and they have gone through so much suffering that at least they want a peaceful ending. Take good care of yourselves, and enjoy the symphonic music that you are part of! I think of Schubert's lines from his song 'To Music:' 'Thou lovely art, My joy and consolation, Whose wondrous power drives all our care away....'
So sorry for your loss. It sounds like you had such a special bond. What a wonderful thing to cherish. I think that knowing what a person wants at the end is very important. My husband and I have had that conversation, and it's a relief. Take care.
April,
A fine dress rehearsal indeed. I am so glad that you and your husband are having these discussions. My husband died from multiple myeloma two years ago. Though he had it for 5 years (and was an MD), I think he always thought he'd beat it, or a cure would be found. I think he also thought he'd know when the end was approaching. He died of sepsis. At the time, his wishes were "full code." I was quite certain he was dying, but I wanted to respect his wishes (in case he didn't!). Instead of lying in bed with him, or even holding his hand, he died while on a vent, on dialysis, and with something attached to all of his extremities. I got trapped in the room by the crash cart while they were attempting chest compressions. My family firmly now knows my wishes.
April,
We know more than most people. We know death can be soon. So what? So we can be prepared. So we can put fear behind us. So we can prepare those who love us (as much as we can). And so we can live each day fully in the face of it all.
Love to you and Warren
Dear April, what a thoughtful and thought provoking column. I am glad that you were able to fulfill your Aunt’s wishes. I wish for some peaceful and happy days for you and Warren. Best wishes.
Dear April, I'm so sorry for your loss. Your column was (as usual) well written and clearly written from the heart. Thank you for sharing such a deep and personal experience. It is clear that you have found a way to make peace with mortality...both that of others and of your own. By doing so, you are free to enjoy the life you've been given and be loved and love others. Of course, that doesn't diminish the loss you feel when you lose someone near and dear. I hope you can take comfort from the memories. God bless you and your husband.
Beautifully written April, my condolences to you both for your loss of Aunt Ginger. She did live a full life, and she was blessed to have you as her niece and advocate. May God bless you in your grieving.
Such a beautiful, albeit sombre, article. My deepest condolences on the loss of your Aunt Ginger. She was lucky and blessed to have you in her life, and the closeness you both enjoyed is very palpable. I know she felt loved and cared for to the very end.
Talking about imminent death is not easy, especially discussing some details. My dad passed on in May 2018, after a 10-year battle with multiple myeloma. It was rough at the end, and sadly he had not been free in discussing what he would want at the end. For him, it felt like passing that death sentence discussing such issues, and it is sadly so in our African setting.
That you and your aunt, and also with your husband discuss the end is a dress rehearsal for an event that is inescapable. It is a tough discussion, but at least it brings a sense of preparedness for whatever comes.
Sending you love and light.
I have been reading your articles, as I am a new subscriber. I very much enjoy them, and your decisions to be so involved in your treatments is wonderful. You are facing the future with your eyes wide open, and an attitude to give life your best shot. My husband, who is 85, has has myeloma for only a year, being diagnosed after falling and breaking 5 ribs. I was amazed to read that you had multiple myeloma for over 14 years.
Thanks for giving a picture of one persons perspective on this nasty disease.
I'm sorry for your loss, April. This is a very powerful column. Thank you. It is a very good reminder that all of us need to think about and plan for our passing. Not just myeloma patients, but everyone. It is a hard subject, but one that needs to be discussed before the emergency so clear heads and hearts will prevail.
I cannot say enough about the comments made on this column. My heart is full from the outpouring of support and love for my aunt's death. My heart also reaches out to those of you who have gone through losing someone (well, we all have) in less than ideal circumstances, Terry Mokua and Marianna Singer especially. Dealing straight up with dying and death is never "fun," but I am grateful to be able to have that conversation with those close to me and with all of you.
And, just for the smile--we are having bitter cold weather in Ohio this week and today I wore to work (over my dress, over my winter scarf) a bright red sweater that belonged to Aunt Ginger. We were not at all close in height or size but her very favorite sweater fits me exactly. It was a nice hug of a memory.
Yes when we are a caregiver for another, it is a dress rehearsal as you say. I hadn’t thought of it that way until reading your column and then reflected on my caregiving relationship with my mother-in-law. Her daughter, one of my best friends, was the main caregiver; but when Sis was not available, sailing in the summer months or travelling across many states to her own daughter’s home, I was second in place (Mom had signed papers designating both of us). This was such an awesome responsibility/gift as Mom had five other children. Mom and I had an excellent relationship and she trusted me implicitly. She suffered a massive brain bleed when Sis was away; so I had the responsibility of telling the doctors to hold any further treatment when it was obvious that her life would be more compromised than it already was at the age of 92. Sis arrived in time to spend the end with Mom, and we were all with Sis when she was able to tell Mom that it was OK to let go and to say goodbye. My own mother’s death from a fall was unexpected, but I also had the responsibility of telling the doctor to hold any further treatment. My mother and I had discussed what she wanted at the end several years before. I have had MGUS and now high-risk smoldering myeloma for 15 years and am probably soon to start treatment. I had already signed documents years ago stating what I want at my own ending. My husband of 53 years and I had both signed our papers but neither one of us imagined a cancer diagnosis or heart problems.
We now need to really discuss what the ending could be and what we will need to give to each other when the time comes. The gift of letting go, without the trappings of modern medicine invading our last precious moments together, is one of the most important gifts we can give each other.
April, thank you for sharing your “dress rehearsal” and reminding us to plan ahead.