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.

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.  

“Can you ask my wife if she’ll be my roommate if I’m positive?” Mr. Jones yelled to me through the door of room 32 on Ellison 12. It was the spring of 2020, during the first COVID 19 surge, and I had been redeployed from my usual job as an MGH PACU nurse to work on a COVID unit. So many questions were yelled to me during those three months, as I rotated throughout the hospital, going where I was needed. From behind the glass on White 3, Ellison 3 and Wang 3. “Can you get me more syringes, pain medication, the blood sugar machine? Can you call the Prone Team? Do you know how to speak Spanish?” Mr. Jones’ question was an easy yet hard one to answer.

I started nursing school in the fall of 1988 in the middle of the AIDS epidemic, during a time when everything was changing. I remember my nursing instructors reviewing a new policy of wearing gloves for patient care that involved contact with body fluids. By the time I graduated I recall my first months of practice being inundated with traffic signal colored universal precaution bags outside the patient’s rooms. Red for bio hazard linen, yellow for standard soiled linen, and whatever you were unsure of was to be placed in the green containers. I was often afraid that I would dispose of things incorrectly during those uncertain times.  How was I to remember all of this as a new nurse? How would I pass my boards? I felt overwhelmed. I am pretty sure the patients did, too. How could they not? 

At these times, I would remember my father’s words: “Talk to the patients, have them tell you their life stories. Don’t let the technical part of your profession make you lose sight of your vocation.” When I was 15, my father, a brilliant nuclear physicist, told me to become a nurse because, as he put it, I cared about who people are and what made them special. “You ask people questions and you listen,” he said. 

So, I followed his advice and did what I was good at, asking and listening to stories from people in times of need. “What’s your favorite vacation spot?” I would ask. “What’s the most entertaining concert you have been to? What’s your favorite food (outside of the hospital, of course)?” 

In 1995, after meeting my husband on a beach while watching a sunset, I moved to Boston to be near him and started working at MGH, where I spent 15 years caring for cardiac patients. Cardiac medical situations can be extremely stressful. I tailored my questions. “Who makes your heart feel good and how did you meet them?” I would listen to the answers -- “my mom”, “my grandson” and sometimes even “my dog,” followed by the story of why and how they met. These moments of listening to someone share with me a moment of their life that was not filled with fear, pain and anxiety was a connection. A connection that I was honored to be a part of.

For the last 10 years I have worked in the post anesthesia recovery unit—the PACU--for patients going home the same day after elective surgery. For me, this nursing environment has been less stressful than I experienced as a cardiac care nurse, yet for my patients it is still quite stressful. I ask the same question just worded differently. “Who is bringing you home and how did you meet them?“ These stories bring smiles, to me and to the patients who are sharing, and these smiles seem to lessen the post-surgical pain.

Now 30 plus years into my nursing career I have come full circle. There is a pandemic. Everything is changing. There are new policies and procedures seemingly changing every day. I am overwhelmed. Patients are alone and fearful, but they have stories and I am good at asking and listening.

The day I met Mr. and Mrs. Jones I was the float/helper nurse on a step-down 36 bed Covid unit. I had not provided patient care as a clinical bedside nurse in eleven years. As I walked onto the unit that overwhelming feeling of disorientation I had 30 years ago returned. So many new protocols to remember. Donning and doffing my PPE. Would I remember the proper sequence to keep myself and others safe from this virus? I actually had written a cheat sheet of the step-by-step order on a 2x2 pink post-it note and taped it to the back of my name badge. My MGH ID in a clear plastic sandwich bag I had brought from home. The plastic making it easier to clean at the end of my shift.  

During my 12-hour shift I was informed at morning huddle that the unit census was full, with one patient—Mr. Jones --alone in semi-private room because his Covid test results were still pending. His wife, who was known COVID positive, was in room 16, bed A, with a COVID positive roommate in bed B. Mr. Jones was in room 32, bed A. Bed 32B was empty. The charge nurse of the day continued on with the rest of the unit updates but I remained focused on her description of “the non Covid/pending covid“ patient in bed 32A. How isolating that sounded. I had been self-isolating from my family during my deployment. I had already been tested for covid the first two weeks of the surge because I had rash and a sore throat. I knew that lonely, impending doom feeling of waiting for results.  I worried about Mr. Jones, a person, not just a case in bed 32A. 

I met Mrs. Jones in the morning as I administered her medications. She exhibited many of the classic Covid virus symptoms – including body aches and loss of her sense of taste and smell. She also had a noticeable cough and an oxygen saturation of only 90 percent. She required supplemental oxygen and was receiving multiple medications and breathing treatments. As I administered her medication, she mentioned that she was waiting to hear how her husband was feeling. “I really hope he has a better view than I do,” she said, as she sat upright in bed. She was slight in size and her enormous black purse, next to her on the mattress, seemed to fill all the space.  She kept on taking articles out of her purse and laying them on the bed next to her. She took out her cell phone, looked at it, turned it in her hands. She rummaged and dug deep, pulled out a lip stick, crackers, keys, a small package of tissues. She then systematically put them back into the bag in the same order she had removed them. Watching her fidget, I thought to myself that she must be worried about her husband. 

The room 16A in the Ellison tower is the room near the stairwell, with no view. If you stand at the foot of the bed and look out the window, all you see is the corner wall of the Lunder building – solid and gray. I encouraged Mrs. Jones to sit in the chair and have her breakfast. With much hesitation and cajolement, she was sitting in the recliner chair within the hour. As I was leaving her room, I asked Mrs. Jones if she would like me to check on her husband for her and if it was OK if I gave him an update on her condition. She replied that she was so exhausted and worried that she would appreciate it if I did.

I stepped into the hallway to doff my PPE – removing the disposable gown, the hair bonnet and gloves, everything but my N95 mask which would remain on until my short lunch break, for seven hours straight. The indentations and sore on my nose would last for many days. 

As I donned a new set of PPE outside the door of Mr. Jones’ room 32, I could see blue sky and the Charles River. The beautiful view made me breathe easier. I spent the next two hours administering care to Mr. Jones, just the two of us in his room. Me with gown, gloves, face shield and an N95 mask. Him with just a hospital gown and slippers. I asked my questions. “Tell me Mr. Jones, how did you meet your wife” I have no idea how much time passed in that room. Mr. Jones told me how he met his wife at a Red Cross dance. He recalled she was there with her sister. He laughed when he told me she wouldn’t dance with him when he asked her. They sat and drank coffee instead. He asked her to marry him two days after they met! He told me how he had gone to be a soldier in World War II.  With his return he and his wife raised a family in the city of Boston and now his children lived in the same neighborhood with their children.  With all the conversation he became short of breath and required oxygen. “My wife and I do everything together,” he told me, “so I know that we both caught Covid. I really miss her now. Can you ask her if she’ll be my roommate if I’m positive?”

Mr. Jones’ results came back as positive for the Covid virus at 6pm. My shift ended at 7pm. Before I left, I mentioned Mr. Jones’ request to the nurse in charge. “Only if they both agree,” she replied. I called into Mr. Jones’ room, utilizing the mounted iPad to ask his permission to disclose his results to his wife, as well as to confirm his request. He agreed. After donning PPE once again, I walked back into room 16A to meet the concrete wall view, paling in comparison to the Charles River of 32A. I informed Mrs. Jones that Mr. Jones had tested positive for the virus. “Your husband would like to propose an idea. If you would like, you can become his roommate in bed 32B. You can recover together, and he has a fantastic view from his window.” With the smirk of a wife who had been married for 40 years, she agreed. With help of other staff members, we wheeled a masked Mrs. Jones into room 32. Rolling into the room, her husband’s face lit up. Looking out to the Charles, she turned to her husband with a smile in her eyes and said, “I’m here for the view”. Mr. Jones then asked me a question that during this Covid pandemic I was happy to answer. “Can you see why I missed her?” 

I never went back to Ellison 12 after that day. My rotation on the unit had ended. The next four weeks, I cared for Covid patients in the ICU overflow units, the post anesthesia recovery care units that I had worked in for the last 10 years converted to serve this purpose. The patients were ventilated, sedated and really sick.  I was fearful, anxious and scared. In my thirty years as a nurse I had these feelings during emergency medical situations, but the moments had always passed. Now, day after day in the Covid ICU, these moments lasted longer. It was me, the nurse, who now needed a sense of connection to get me through. But sometimes I was paralyzed.

I remember one evening when I was caring for a patient named Juan, working with my nurse colleague, Bonnie. Every night, Juan’s wife would call the unit at a scheduled time for an update on her husband's condition. A medical interpreter would also be on the phone to translate our report into Spanish. Juan was still on the ventilator, too sick to speak for himself. That night, before the interpreter was dismissed, Bonnie asked Juan’s wife important questions that I was too overwhelmed to ask in that moment: “What does Juan do for fun? Does he fish, watch sports? What are his grandchildren's names?” Juan’s wife answered with tears in her voice that we did not need an interpreter to understand.   I could breathe again. I asked her “How did you meet Juan?” Her reply “En la playa.” At the beach.

Unknown to me, Bonnie had been asking patient families questions about their loved ones and then creating story board posters for the patient rooms. These beautiful posters were the connection, lining the walls with brightly colored pictures of the patient on vacation, with loved ones, with the names of loved ones written in colorful letters next to the photos. The following evening Juan’s room was decorated with a poster featuring a photo of him and his wife. That day, the anxious feeling that had been weighing me down lifted a little. The connection that I had been working to create for my patients for so many years had now been created for me.  I finished my shift that day recalling the photo of Juan and his wife at the beach and their smiling faces.

Now, the PACU is no longer a Covid ICU. Elective surgeries are again scheduled. I guess we are “back to normal,” but not really. Being a nurse during this Covid pandemic has changed me and opened my eyes. I now become more concerned when patients are alone. Where are their support systems?  When I ask a patient the question “Who is taking you home and how did you meet them, “ it’s different. Sometimes, the answer is “I have no one.” I now take more time than before to help them find someone, so they won’t be alone. I am grateful for my peers who do the same, and who ask patients questions that help us see their humanity. I think often of the Jones' and how Mr. Jones’ question -- “Can you ask my wife if she’ll be my roommate if I’m positive?” --brought a smile to my face and a connection to my heart amidst the surge of unanswerable questions. 

Written by: Laura Beretsky

July 15th marks the six-month anniversary of Laura’s Law, which sets standards for signage, lighting, security monitoring and intercoms outside locked hospital doors.[1] That it took somebody dying outside the E.R. to require these obvious essentials is a sad statement about our medical system. The law was championed by journalist Peter DeMarco, whose 34-year-old wife Laura Levis died of an asthma attack outside a local Emergency Room. She had taken herself there at 4:00AM in September 2016 but called 911 when she couldn’t find the unapparent entrance. Sadly, the ten minutes between Ms. Levis’ call, and when she was found in cardiac arrest cost her life.

Mr. DeMarco published a Boston Globe article detailing her story in 2018[2]. Reading the details of her preventable death, I was horrified and spellbound, struck by the systemic patient powerlessness built into the medical emergency system. I’ve had my own challenging experience accessing hospital’s emergency services, and while it wasn’t fatal, it was similarly subpar.

On June 28, 2014, I was taken to the emergency room where the neurosurgeon on call performed a life-saving craniotomy to remove a subdural hematoma. I woke up the next day woozy and disappointed. I have a history of seizures, and the hematoma had developed following an elective brain surgery I’d had two months prior.

I was surprised when the hospital discharged me the following day – I’d just had my head cut open, after all. I felt vulnerable because I was: I was readmitted to the same hospital two more times that week following grand mal seizures. The second time was an hour after they’d released me. It was the Esplanade annual fireworks night, so my husband, Mark and I decided to avoid traffic and take the subway home. Two stops after boarding, I felt tingling neuropathy in my left hand -the same precursor for the seizures I’d recently had. I wished I were back at the hospital!

“I’m afraid I might have another seizure. We need to get off at the next stop,” I told Mark. Approaching Harvard Station, I anticipated the train’s brake, and tried not to freak out as the tingles in my hand traveled up my arm. The last two grand mals didn’t kick in right away. I will probably make it to the hospital, I thought. “Maybe we should call 911,” I said exiting the train.

“No, traffic is miserable because of the fireworks. It’s only three stops - let’s take the train,” Mark said. Based on the past week’s experience, if I were about to have a seizure, we’d make it on time. Financial calculations bolstered my timing estimates: Health insurance wouldn’t cover an ambulance bill. We took the train, arriving at the T stop in ten minutes. During that time, the tingles had traveled up my arm and onto my face. I was coherent, but terrified - my body was succumbing to a seizure’s bedlam. Mark escorted me through the hospital lobby to the reception desk.

“My wife’s having a seizure. She needs help,” he urged. The administrator looked at us like we were from Mars.

“What’s your name?” she asked me.

“Laura Beretsky.” I was lucid, but the prickly sensations had spread to the other side of my face. “I was discharged less than an hour ago.” I added.

“Address?”

“She was just discharged!” Mark snapped. “Can’t you find contact info in your computer?” The woman impassively typed.

“So, you’re still at 64 Hooker Ave?” Were they friggin’ serious? Did they really think my address had changed in the last hour??

“That’s right. All the information is the same.” Mark retorted, annoyance overtaking his typically calm demeanor. “She’s going to need a doctor any second. Can you please get somebody?”

The woman completed her electronic intake. I saw her call to another staff person before losing awareness. I know eventually staff took me to a hospital room, as I woke up there the next morning. After that seizure, they kept me five days, during which time I had my fourth grand mal seizure that week - I was grateful I was inpatient this time.

Just as Ms. Levis knew she had to be hospitalized in September 2016, I knew my brain was too fragile when I was discharged post-craniotomy. I wasn’t surprised that I needed to be immediately readmitted that day, but I was shocked by how hard it was to get back into the hospital.

When I read the circumstances of Ms. Levis’ death years later, I was appalled but not surprised. Had Mark and I opted for the ambulance, there would have been no questions asked by hospital administrators. Medics would have brought me in and relayed medical details to staff. Instead, we made the decision to take ourselves to the hospital. Like Ms. Levis, our choice to independently seek out emergency care led to glitches when we got there.

Ms. Levis’s home was near the local hospital. I suspect one reason she chose to walk there was that it seemed like the simplest way to get from point A to point B. I felt the same way when I compared taking the subway to waiting for an ambulance navigating holiday-driven congested streets. It’s very possible that the cost of calling an ambulance also played a role in Ms. Levis’ decision. That patients must calculate dollar amounts into the equation of making safe healthy choices, as hospitals focus on the bottom fiscal line is another derogatory statement about our healthcare system. Patients are damned if they call 911 -with a bill- and damned if they don’t - with hospitals that may be ill-equipped to assist them.

Thanks to Laura’s Law, the signage and lighting at the local ER Ms. Levis tried to access are clear, the clinic obvious to passersby, and patients can communicate with staff via intercom[3]. While Laura’s Law doesn’t address penny-pinching discharge protocols and unaffordable ambulance fees, it improves patients’ ability to independently access care, an important step toward patient empowerment. Clearly there is more work to do.

[1] Governor Baker Signs ‘Laura’s Law’ | Mass.gov

[2] Laura Levis was left to die outside an ER. Why were the doors locked? - The Boston Globe

[3] CHA Somerville Campus (challiance.org)

Author description: Laura Beretsky is a Somerville-based writer working on a memoir about the challenges facing those who live with perceptible health conditions.Please visit her website at https://lauraberetsky.com/   Her work has appeared in Cognoscenti, Sisyphus Magazine, Wire's Dream, and The National Library of Poetry, and Cognoscenti.

Uniquely present to the intimacy of direct patient care, nurses have always been on the frontlines of healthcare, and especially during the COVID-19 pandemic. 

On May 5th, 2021, Health Story Collaborative hosted a “live” virtual storytelling event at Mass General Hospital as part of the 2021 Nurse Recognition celebration.

Our goal was to honor both patient and nurse voices and to highlight nurse-patient relationships. 

Featured storytellers included: 

• Michelle (Mitch) Vassilopoulus, RN, a staff nurse in the Wang Center for Perioperative Care who was deployed to COVID units early in the pandemic, during the months of March and April, 2020.  

• Rhea Photopoulos, a Nurse Practitioner in the Tucker Gosnell Center for Gastrointestinal Cancers in the MGH Cancer Center and her dear friend and college roommate (28 years ago!), Annalisa di Palma. During the pandemic, Annalisa’s mom, Carol, was admitted to MGH for worsening ovarian cancer and was ultimately discharged home with hospice. She died on July 15th, 2020. Rhaea played a significant role in Carol’s care and comfort and the end of her life.