Power of Nurse Patient Storytelling: Annalisa's Story
Hello, my name is Annalisa and this is the story of my mother’s battle with ovarian cancer as seen through my eyes, her only daughter and one of her primary caregivers. So, I guess you can say this is really also my story, in which my dear friend Rhaea Photopoulos, an amazing nurse practitioner here at MGH, is a very important character.
My mother Carol was born in 1938 in Lynn, Massachusetts to Polish and Lithuanian parents. My grandmother worked in the shoe tanneries and my grandfather was a career machinist at General Electric. My mom was a bright, only-child and a latchkey kid who spent her time playing outside, reading, or at the movies.
By the 1970s my mom was a happily married, stay-at-home mother to me and my younger brother. My dad was in the grocery business and we lived a modest, middle-class lifestyle.
It’s fair to say that when it came to medical issues, Carol was ‘old-school.’ Not to say that she was anti-Western medicine. Definitely not. It’s just that she was never one to run to the doctors with us unless there was something obviously wrong like a broken bone. She was what we might call, an under-reactor.
When my brother and I became teenagers, I swear my dad did the worrying for the two of them. My mom was a strong Catholic and would always say she was putting something in ‘god’s hands’ and not expending valuable energy worrying, because worrying wasn’t going to change the situation.
Growing up I was ambitious, hard-working and a self-starter who my mother always said was going to be successful no matter what. I became self-reliant almost to a fault - always in motion, constantly doing, doing, doing. I was babysitting and doing my own laundry by age 11 (remember, this was the early 80s – kids could do all that stuff back then!); worked a ‘real’ job at the hospital by 15; ran 11 seasons of HS track. I earned myself a scholarship to Boston College -and thank goodness -because my mom made it clear that she wasn’t about to mortage the house for me to attend college! Carol didn’t mince words! Boston College is where I met my longtime friend Rhaea. We met at the workout center known as The Plex, and became fast friends. Rhaea is the angel in this story, as you will learn.
My mom was widowed in 2010 at age 72. The first few years were very difficult, but at last in July 2015 she decided to take a religious pilgrimage to France where she would bathe in holy water and pray for her long list of friends who needed her prayers. Little did she know, but by the time she was bathing in that holy water, ovarian cancer was actively growing inside of her.
After the pilgrimage, my mom followed up on a belly button infection from many weeks prior and learned that the biopsy result came back positive for cancer.
The next stop was the gynecologist where we learned that my mom had a tumor on her ovary, and it appeared that the cancer had spread. She would need surgery ASAP. We were both stunned.
One of my first calls was to Rhaea. A caring, compassionate, palliative care nurse specialist at MGH, Rhaea was well-connected and knowledgeable. Plus, she and I had been friends for 25 years at this point so she knew my mom well. Mom and Rhaea had really bonded through their common faith and Polish heritage. Rhaea and I have been through thick and thin together, always showing up when it counted. After BC, we lived together for a couple of years during graduate school, and without Rhaea to watch out for me I don’t think I would’ve eaten one single thing besides pasta with broccoli and fake Parmesan cheese (the kind that doesn’t need to be refrigerated)! Rhaea would always run out to Bread and Circus and get me some chicken to throw in there - just to make sure I had protein! Giving and caring are just in Rhaea’s nature.
With Rhaea’s help, we ended up in the office of a top-notch gynecologic oncologist and surgeon at MGH who held my mom’s hand and listened intently as Carol told her that she felt confident that everything was going to be OK. My mom also told the doctor “she’s in charge” (and pointed to me). “You can deliver all the bad news to Annalisa.” She then thanked the doctor and in true Carol form told her that she was in her God Box.
I accepted the role of ‘receiver-of-all-bad-news’ and the one who is ‘in charge’ as a given; I wasn’t upset about the added pressure, but reflecting back on the experience I realize that it was a lot of pressure. I thought that since my dad couldn’t be here, I would be the best substitute that I could.
And- I had my angel Rhaea by my side.
The day of the surgery was the day before my birthday, August 21st, 2015.
I stayed with my mom until they needed to wheel her down for anesthesia. I remember clearly that she had plastic rosary beads entwined around her hands, because she was told that she could take the plastic beads into surgery but not the metal beads. After she prayed over her medical team, she and I said our goodbyes and exchanged ‘I love you’s’
When the doctor called, she seemed to suggest that the surgery had been a great success, but in the same sentence she said something about my mother “possibly” having a “decent quality of life” for 2-3 years. 2-3 years. Stage 4 ovarian cancer. I was in a fog and I felt that the doctor and I were speaking two completely different languages, so I didn’t fully absorb the conversation in the moment-it wasn’t until after we hung up the phone that it started to sink in.
I decided to Google ‘ovarian cancer’. What I found was that Stage 4 ovarian cancer statistics were not exactly something to be excited about. Living another 5 years seemed quite possible, but another 10 years, well, you’d REALLY have to be one of the lucky ones.
I felt a little numb and discouraged. And then I called Rhaea. Calm, rational, and optimistic, Rhaea assured me that every case of cancer is completely individual and that in her experience patients with deep and abiding faith like my mom generally fare quite well. I felt a lot better, and promised Rhaea that I wouldn’t Google medical stuff anymore. 😁
Fast forward to the beginning of Covid in April 2020, four years after diagnosis. My mom’s appetite and energy level were diminishing. She mustered up the energy to come to our house for Easter, but sadly that day she would have her last (small) glass of Chateauneuf du Pape wine. Kind of appropriate, I suppose, being the wine of the Popes and all. Not long after Easter, I found her in such a weakened state that we went to the cancer center to get checked, marking the first time I had to drop her off with no option to stay, due to Covid.
After reminding her to put on her mask, I somewhat reluctantly let the nurse at the front door escort her in. I flashed a half-hearted, nervous smile, thanked the nurse, got in my car, and drove away.
After a short-term boost from hydration treatment, my mom was right back in the same place: light-headed, no appetite, congested, heart racing, mildly confused. When I brought Rhaea up to speed, she said we needed to get her admitted ASAP. …….
My mom acquiesced, though on the ride in she was very agitated. Her bags were incredibly disorganized and she was pretty sure she had forgotten something - a special religious medal that her priest had blessed especially for her - that was super, super important to her and we had to go back for it. I still needed to get gas and didn’t want to be late, but I turned back, none too happy. I was impatient, and stressed, and I yelled something like ‘we better not be late because of this!! And ‘it better be at the house if I turn back!’
We arrived on time and there was Rhaea, waiting out front with a wheelchair. I breathed a sigh of momentary relief at the sight of her.
The next 2 days in the hospital would be a turning point in the journey: the chemotherapy had ceased to be effective and the recommendation was to stop treatment and focus on preserving quality of life. Rhaea cross -checked recommendations and simplified medical terms for me. End of life intentions came up again, and here is what I knew of with certainty - my mom’s 3 final wishes: 1) remain in our family home; 2) have a funeral mass; and 3) live to her 82nd birthday on July 3rd. Making it to her birthday was a wish that virtually everyone knew about. She and my dad were nearly exactly 10 years apart and my dad died at age 82. For some reason or other she felt that she would be reunited with him after having spent the same number of years alive as he had.
Shortly after she came home from the hospital Rhaea came over to see her in person and to survey the conditions at the house. When I walked her out to her car, she said, ‘She looks good. You’re doing the right thing, AL’ (her nickname for me). You’re doing an amazing job. I am here for you every step of the way. She won’t suffer. I PROMISE.” This reassurance gave me a mini-boost. I went straight home and told my husband what she said.
The final 8 weeks of my mom’s life would find me in survival mode with you name it, from my daughter’s remote schooling, to daily drugstore runs and new medications, to everyone’s laundry, to endless phone calls to coordinate visits or equipment deliveries, to worrying about Carol falling out of bed, and so on. I literally felt as though I was moving in and out of two different lives every time I got up in the morning. I had to get out there every day, get to the drugstore, interact with people. I tried to put the Covid risks out of my mind.
During this stretch Rhaea made a ritual of driving an hour + every Friday to visit with me and Carol. She would bring her daughter and our girls would ride bikes in my old neighborhood while we’d sit outside with Carol and chat. On one of the visits I remember Rhaea opened her trunk and out came potting soil, plants, garden tools and even a shovel! I’m like WHAT are you doing???? Rhaea started digging up the soil under the front windows, right next to the porch where my mom would always sit. She said ‘People are going to be stopping by to see you Carol, we have to make this look nice. AL, where’s the HOSE???’ Another week, Rhaea showed up with some type of Polish food, hoping my mom would eat even just a little.
July 3rd arrived and mom was weak. We barely got her to a chair on the porch. Before we knew it about 50 masked friends and neighbors were gathered alongside the fence. My goddaughter had painted a huge banner that we hung across the front windows and I had managed to keep a few of Rhaea’s spring flowers alive so Carol was literally surrounded by life and love. She was so happy. She had her 2 children and 3 grandchildren by her side plus neighbors and friends of some 40+ years. Some people wanted - even tried! - to come in the gate because they wanted to be close to my mother so badly. My husband did the uncomfortable job of reminding everyone that we were supposed to be social distancing!
One week after her birthday, the hospital bed was delivered. Another Rhaea intervention. It was time, in fact it was past due. Mom had been sleeping in the recliner for several weeks, and she had fallen at least twice that I knew about. The bed was in the front TV room where she spent all of her time, in that recliner watching Mass on TV.
She would live only 5 nights in that hospital bed, with my brother and me alternating sleeping there. Rhaea had suggested a night nurse, but I knew my mother wouldn’t want this. I was in a robotic-like state these last several days, attending to details, wondering, worrying, when and how the end would look.
My mom’s voice was quickly fading away but for about 2 days she could still whisper a few words with her eyes wide open – this in between increasing periods of sleep. Rhaea had told me a while back in one of her prep-talks, ‘she’s going to sleep a lot more but please don’t worry, she will be peaceful.
The first couple of months after my mom’s funeral were both sad and strange. Strange because I had this intense feeling of peacefulness come over me that I had neither expected nor experienced before. I felt an odd sense of relief that I was shy to share with almost anyone outside of my husband and of course, Rhaea. I felt light on my feet, free from an underlying feeling of WORRY that I didn’t even know was there almost constantly for 5 years.
Rhaea and I talked or texted every day or two in those final weeks of the Summer of 2020. The dreaded cleanout of my family home was ahead – a home that was literally packed basement to attic with memorabilia dating back over 100 years. The task was daunting but on that very first weekend, my angel showed up. In Rhaea fashion, she was quick and decisive and she is totally hilarious, like a sweet wrecking ball when it comes to this stuff. She had my brother and me laughing so much that afternoon. I tried to laugh - you really had to - at all of the crazy clothes and jewelry and stuff that my mom had saved. Within a few hours Rhaea’s SUV was packed with all of my mother’s winter coats that she was taking to a women’s shelter on the Cape. As she drove away that day, she assured me that she’d be back again. And I knew that she would.
After three decades of friendship Rhaea and I were spiritually connected already, but now it is a much deeper connection, one that I believe is unbreakable and everlasting. I am in awe of Rhaea’s endless space for loving and caring, inspired by the depth of her knowledge and the empathy with which she executes the tasks involved with caregiving. She makes it all look so effortless. And she does it with a fantastic sense of humor! She reminds me that while life IS serious, we cannot take ourselves too seriously.
Throughout this journey, Rhaea propped me up when I felt as though I was falling, encouraged me when I was daunted by the endless unknowns of caring for my mother through the Covid crisis. The deepening of our friendship after this five-year journey cannot be understated. SHE is the reason, I believe in my heart, that I was able to execute on my mother’s final wishes, and no one can ever take that away. Carol was able to die at home, in the home that my dad built for her and where he also passed away, free from tubes and extraordinary measures.
Rhaea was by my side during an experience that has changed my life forever, and I am filled with gratitude.
Rhaea - I know you are in Carol’s God Box up in heaven, and you are surely in mine.