Power of Nurse Patient Storytelling: Rhaea's Story
That red brick fireplace, its ledge was strong but not that comfortable. Cold in the summer, warm when there was a roaring fire. It was the perfect spot to get close to her when she was sitting in her chair, I could hold her hand. It was our confessional, our little corner of the world where we could talk, where nobody else existed. Grandmother and granddaughter. My mom, a nurse and my dad, a dentist, would occasionally break into our bubble, to hand her a dixie cup filled with milk and another cup with chemo pills. In these moments, as a fifteen year old, I started to think about a healing profession and how nursing would allow me to help people.
But we had projects, my grandmother and I! We sewed, read the paper, ate stale junior mints and just existed. Her hands were always busy folding laundry, saying the rosary, crocheting for hours on end. The world existed around her, and she was the center of our hearts. Metastatic Breast Cancer, diagnosed in the month of October. Columbus Day to be exact. Wow! How has it been 26 years since that day? Oh how I still hate the anticipation of that month.
The summer had disappeared over the horizon and the winter chill set in during those first few months of her diagnosis. The big C, the diagnosis, the day, so vivid in my mind, we were told she had 6 months to live. It felt like she was taken away already but only for a brief moment. Can you catch cancer? Could I hug her? Could I love her the same? Why was I so afraid? All the things that a 15 year old conjures up, staring cancer in its ugly face for the first time.
My very devoted and religious, Polish grandmother, Kathryn Piotrowicz, went on to live well with terminal cancer for 10 years after her diagnosis. Living independently in Philadelphia when she could and then back with our family when she became sicker. It was a gift in so many ways but it was extraordinarily hard on my mother, who was her primary caregiver while also managing a multi-generational household. It was emotionally tough.
July 21st, 1995
The day was a scorcher, 3 H’s, hazy, hot and humid. One of those nights when the evening cooling wouldn’t make its way to the morning. Coming from Boston with my baby sister, driving as fast as I could to my family’s home. I passed Exit 6 on 95, it is imprinted in my memory forever. This is when I stopped crying for about 5 seconds to realize maybe our Babci Kathryn wouldn’t wait for us.
The lessons learned from caring for the sick provide us humility. They also hopefully help us to focus with intention to live a life with no regrets. But I have carried one regret around with me since her death.
I wish I had known. I wish I had known that it was ok to get close to someone when they were dying, that they could hear everything you were saying to them. That hot July night that our Babci died, we made it to her. Opening the back door to the house, it was normally full of life, but it was so distinctly quiet. I followed 10 feet of oxygen tubing on the ground that led me to my childhood bed that had been moved downstairs for her. I knelt by her side, she was tucked in with her sleeping cap on and she looked so small. I was so afraid of the silence, the darkness, the aloneness. I left her side not knowing how to talk to her, what to say.
They say hearing is the last to go. To this day, I still regret that I didn’t stay longer by her side to tell her how much I loved her, how proud I was of her and what an incredible gift she was to our family. Her imprint on our lives would be forever. She passed away 15 minutes after my sister I had arrived from Boston, that hot, hot July night.
I have to believe all these years later, that her story is part of my story. She was a teacher, heaven sent with all the lessons I was to take from her to become a compassionate nurse. To understand the complexities of ethnicity, poverty, perseverance and most importantly love. My grandmother struggled. Her husband passed away when she was 50 and she went on to raise 2 children with limited financial means, yet she moved forward. Despite people’s differences, you can always use love as a thread. As a nurse and nurse practitioner for almost 21 years, her experience has helped me tremendously with every patient interaction. Her story has helped me stay centered and to always remember there is a person behind a diagnosis or long term illness.
April 30th, 2020, it was the height of the pandemic. It was my Dad’s birthday. The skyline of Beacon Hill, the gold dome on the state house glimmering in the distance. Coming from infusion on Yawkey 8, I hurried down the stairwell onto Yawkey 7E, to return to clinic. All of our patients were worried about the virus, never mind a cancer diagnosis. Pre-pandemic, the halls would have been buzzing with energy, patients waiting to check in, sometimes music playing, maybe even a painter giving patients painting lessons. Now, it was eerily quiet, no noise, no conversation. Almost like a holiday, but it wasn’t “ I need to call dad later to wish him a happy birthday,” I thought to myself.
I heard my phone ding, a text message from my college roommate and dear friend, Annalisa. I call her Al. Her mom had been living with metastatic ovarian cancer for over 5 years. “Carol is not doing well,” she wrote. “I need to talk with you. I need your advice.” Annalisa is not an alarmist in any way and had been doing a beautiful job of managing all things medical for her mom. She is deferential and private and really never asks for help unless it is important. My heart sank. Not now, not during this pandemic.
A year prior, I had convinced Carol to get a second opinion and to consider one more line of treatment, an oral chemotherapy medication, and she had done incredibly well with very little in terms of side-effects, until now. Carol was a go getter, a busy lady, up early, late to bed with a smattering of things she did everyday. With faith as her central anchor, she was living her best life during her cancer diagnosis, she learned to redefine her life after her beloved Roger passed away 10 years ago. I was almost shocked to hear all of a sudden she was in trouble. Why now?
As healthcare professionals, we are often asked our opinions. What would you do, how would you manage this? April 30th, 2020, I did not want to give an opinion. Not during a time when the medical world was making decisions around a surge of Covid cases, a virus that we didn’t understand, space availability, patients passing away without loved ones by their side. Professionally, I knew that Carol needed to come into the hospital to deal with her symptoms or she may pass away quickly. Dizziness, weakness, shortness of breath. I suspected hyponatremia and potentially a pleural effusion or fluid in the lung. Progression is what I feared, but I also knew Carol had been crystal clear that God was in charge, her worries were always placed in her God box. The oral chemotherapy was her last treatment option. I wrestled with my mind, it was a tug of war. Do I keep her at home and just let it go the way it is going to go, or do I tell her to come into the hospital to manage her symptoms and maybe get a little more comfort and a little more time with her family, to prepare. But we were in the midst of a pandemic. I wanted to be there for Annalisa, for Carol, to do the right thing, but my mind was clouded with emotion, because I love them. I told Annalisa to bring her in.
I waited, I waited, I was so nervous. I had the proverbial pit in my stomach, my thoughts were racing. I was asking my dearest friend to drive her mom to a hospital that was admitting Covid patients by the dozens. What if this was the wrong decision, what if she passed away this admission? What if she died alone, away from her daughter and son who were her everything? I was grappling with my own guilt around being protected from COVID facing care due to my youngest child’s health issues, while many close NP colleagues were standing up an outpatient Covid unit. I knew I needed to step up to the plate and help Annalisa, to help Carol. Maybe this was where I was supposed to be. I held on to my faith.
They finally arrived to the front entrance of the Yawkey building. They looked so worried, those stupid masks made it all so unfair, it felt so transactional. That we couldn’t interact in our normal way, a hug, a conversation. Instead Annalisa was handing over her Mom, it felt deeply wrong. Humor is sometimes our only defense in tense situations. We had a quick laugh. They were late because Carol had forgotten her forbidden stash of communion her priest gave her. It is sacrilegious to have communion in your pocketbook, but we chuckled under our breath. Only Carol. She needed it, to know she was protected. The communion would provide her with solace. In every way, it felt so reassuring. There was no decision to own. Carol wanted to be admitted. She wanted more life despite her failing body. Her faith was intact and we would be ok.
She looked weak, she was tired, she was scared but still the strong woman I knew. I came back to reality. Yes, it was 5:30 pm and still April 30th. Dad’s birthday.
Carol would be discharged with hospice within 48 hours to her home of more than 30 years. Days turned into weeks and then months. She was determined to make it to her 82nd birthday in July. It didn’t seem like an impossibility. She was strong and the hospitalization allowed her the pause to reset the clock
Now she was in-charge of the time she had remaining.
We would spend the next 10 weeks learning about love, about faith. Annalisa and I were blessed with daughters late in life. Our girls, 10 and 11 have always loved each other because of our life long bond. The four of us - my daughter and I, Annalisa and her daughter-- would be there on most Fridays visiting. Carol loved it, we did too. Annalisa with her fancy ice coffee in hand on the front stoop of Carol’s house, the girls riding their bikes to a little park, their own little space of happiness.
Annalisa and I talked with Carol about her worry around death, about what things felt important to her, about her deceased husband. We just talked like we always did. There was so much peace in these weeks, it was like it was our own little confessional away from Covid, away from the big C. The weeks were filled with normal summer activities, planting flowers, eating fruit, and the girls had their favorite junk food, ice cream, cupcakes, you name it. There were lots of hovering feelings about not being at the Covid bedside as a nurse, lots of regret and guilt much of the spring and summer. But in this little part of the world, I helped one family.
Carol would venture out of her house, everyday to sit in a beach chair, while people came in droves. Covid or no-Covid, her lifelong friends could not be stopped. Lined down the street daily, with a honk, a wave or a quick gesture of love. There was beauty transitioning to hospice, to have time for reflection with those that you love.
Carol passed away a little bit after her 82 birthday this past July 2020. She taught me so much in her final months. She helped me spiritually. You know, she was Polish.
I go back to the seat on the brick fireplace as a young teenager. I go back to the night my grandmother passed away, to the words I did not say. I didn’t know how she was feeling when she was facing death. Was she scared? We didn’t talk about the legacy she hoped to leave behind.
I often think of the countless families I have worked with as a nurse over the past 21 years. Being able to share knowledge, compassion and provide advocacy makes my own regret dissipate. For Carol and my dear friend Annalisa, I knew what I needed to do. To ensure that Carol did not suffer, that Annalisa was left with the tools and knowledge to help Carol with a peaceful death. Annalisa and her brother Paul were incredible advocates for her and I know they will never live with regrets. They were God-sent.