On March 3, 2024, we held our second annual event, “Reclaiming Our Mental Health Stories”, during which we shed light on the experiences of individuals navigating their mental health journeys, which are often stigmatized, dismissed, and underdiagnosed. Experience the power of storytelling as you listen to Marina, Nathalie, and John, three courageous storytellers who shared the challenges and insights they’ve encountered on their journeys with mental health.
On February 4 2023, we held our inaugural annual event, “Making the Invisible Visible”, during which we shed light on the experiences of individuals navigating “invisible” chronic illnesses which are poorly understood, challenging to diagnose, and often dismissed by the healthcare establishment. Experience the power of storytelling as you listen to Katy Morly and Lili Fox-Lim, two courageous storytellers, who shared the challenges and insights they’ve encountered on their journeys with chronic lyme disease and myaligic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Listen to a transformative story sharing event, hosted by students from the Harvard Medical School advanced course elective, "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice," taught by Annie Brewster and Jonathan Adler of Health Story Collaborative.
You will hear about the lived experiences of two individuals, one navigating an advanced neurological condition and the other mental illness and substance use. The third storyteller's story is not featured in this video due to personal privacy preferences, but they are present in the discussion.
During nurses month, on June 22nd, 2022 we honored the stories of Nicole Horigan, RN, BSN, Clinical Nurse and John Bagley (patient). They met during John's first visit for a clinical trial treatment for prostate cancer and their special relationship is a testament to what can happen when we allow ourselves to be vulnerable and open.
During nurses month, on June 16th, 2022 we honored the stories of Lauren Aloisio, RN, BSN, Clinical Nurse, PACU and Jonathan (patient) and Nancy Gardner (patient's mother).
The bond that exists between Lauren, both a nurse and cancer survivor and her patient Jonathan, a cancer patient, is truly remarkable and a reminder of the tremendous power that connecting and listening to one another can have on our ability to heal.
“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.
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.
Picture this scene:
It was winter in 2011.
I was 35 years old.
I had two little kids, a girl and a boy. Clare was 4 and Hayes was 1.
My husband Sam was totally engaged in family life, a great husband.
My book publishing job was full time and included frequent travel.
I was trying to take care of the kids, to be a good wife and good friend, to exercise, to eat well, to cook, to read, to stay up to date on current events, to relax, to meditate, to travel, to volunteer at our preschool.
I knew that I could do all I wanted to do and I was happy a lot of the time. But as much as I was happy, I was exhausted and cranky.
I remember saying to Sam that I couldn’t maintain the level of intensity, that my body was breaking.
I was worn out.
On the last Sunday in February, I felt a lump in my right breast. Since Hayes was still nursing, there were lumps and bumps, but this felt different. More solid. I went to my midwife’s office on Monday morning, and the nurse agreed that the lump felt unusual. In fact, the cheerful banter about the kids immediately stopped when she felt the lump. Her face was instantly serious, drained of color. She recommended that I have a biopsy and she scheduled it for Thursday of that week. That was my first mammogram and my last. The experience of the mammogram and biopsy was fine. I was a little scared, a little shaken, a little teary but at that point there was a 50% chance that the lump would be nothing to worry about. Life would go on as usual.
But that of course is not what happened. The results of the biopsy came back on Monday morning. The same nurse who helped during both of my pregnancies and who sent me to the hospital for the test called me that morning. She said that all of the details of the biopsy were not back. The preliminary news: You have breast cancer. It is invasive duct cancer. We can’t tell you more at this point. You have a meeting with a great team of doctors at Mass General next week.
What??
On the one hand, this was shocking news. I have breast cancer? I am 35 years old. I have two babies. I have a full time job. I have plans. How is this happening?
On the other hand, cancer had always been looming on the edges. My mom died of pancreatic cancer when I was 2, my brother was almost 6, and she was 33.
There was a haunting feeling that we were reliving history. The ages were too close, the story too close. I knew what Sam and my kids could lose. The pain is real and forever.
[I want to pause here for a second. I have a hard time untangling my cancer story from my life story. My mom’s death is certainly part of my cancer story, but it is important to note that it is really the central theme of my life story. Her death changed everything—from where I grew up to how I grew up to the person I married and to how I mother. My cancer story exists within her cancer story.].
In the days after the diagnosis, I was in organizational mode. I spent a lot of time organizing my office, calling family and friends, grasping for control.
At our first medical appointment, we talked about my cancer—about the stage, the grade, and the plan. Sam and I left with a clear idea of how MGH would treat my cancer. I would have a lumpectomy, followed by chemo, and maybe by radiation. We had a team in place. We felt in good hands.
At the recommendation of the doctors, I decided on genetic testing for a breast cancer gene mutation. It was notable that my mom had cancer in her early 30s as well, even though it was a different cancer, one that I always thought was not inherited. What I didn’t know before my diagnosis is that pancreatic cancer has a dotted line to the BRCA mutations.
A few weeks later, on a really crisp and bright morning, our little house was buzzing. I was getting ready for work, the nanny had just arrived, my husband was using the vacuum in the kitchen, Hayes was crying, Clare was saying “Mom. Mom. Mom. Mom. Mom.” The phone rang. It was my surgeon. The rest of the world fell back, sound faded, as I heard her words: You’re BRCA1 positive. This changes the course of treatment. We recommend a double mastectomy, followed by chemo and radiation. For whatever reason, I immediately agreed to this path. I was not reluctant to have the surgery, even though I nursed my babies for a long time and was still nursing Hayes. I was attached to my breasts, but I knew they had to go. I wanted every single breast cell to be history. The mastectomy would be followed by breast reconstruction and an oophorectomy because of an increased risk of ovarian cancer. At that point, I didn’t understand the long-term consequences of taking out my ovaries, removing my breasts, but even if I had, I would have moved forward with this plan. I wanted to do everything possible.
Waiting for the surgery was hard. The mind plays tricks: I knew that I could feel the tumor growing. I could feel it move to my lymph nodes.
The surgery was on March 31. I don’t remember arriving at the hospital, meeting with the doctors, going under—really any of it. I do remember my parents at the hospital. I remember being incredibly out of it. I remember a friend visiting, though only vaguely.
Day by day, I felt better.
At the end of April, I was accepted into a clinical trial which required a full body scan in preparation. Though my oncologist was confident that the cancer had not spread, I was happy to have the scan for peace of mind. A baseline. I went to MGH West for the day with my oldest and best friend Rosie. I drank the awful drink, we laughed, goofed around, and headed home. I was not nervous at all.
We had been home for about an hour when the phone rang. It was my doctor. Something in the liver looked suspicious and a biopsy was scheduled for the next morning.
The biopsy was the worst experience of my life. The giddiness of the day before was gone. I was terrified. My husband took me to the appointment in the bowels of MGH-no windows, no private room. Curtains only. The anesthesia did not totally knock me out because the doctors needed me to respond to cues. The suspicious spot was behind my ribs so the needle went between two ribs.
The medicine made me sick. I vomited so much that blood vessels were popped on my face. I couldn’t speak. Finally, around 8:00 my husband wheeled me out and we were home soon after. My daughter ran up to me—I remember in pink tulle—but I couldn’t speak and I was too weak to even hug her. I slowly carried myself upstairs and into bed.
This was a very physical experience. I felt so annihilated by the experience that I didn’t have the energy to worry about the biopsy results.
The results were fine. The cancer hadn’t moved. The suspicious spot was a lesion that has now been monitored for five years and hasn’t changed. We stayed on course. Chemo started in early May.
I got through chemo. I very rarely felt nauseated like I thought I would. What I did feel was totally crazy. I was wired and not thinking straight. I was wide awake but totally out of it. I felt out of my mind.
Surprisingly, over time, I began to feel healthy and confident with my cancer look. I loved the shape of my bald head and the colorful scarves. I felt beautiful, but not always. During a visit by my incredible sister-in-law Mary Lou, I happened to catch a glimpse of my naked body in a mirror. I was thin. I was bald. My breasts were gone, with only the shape of my expanders and stiches where my nipples used to be. My chest had been dug out up to my collar bones, so the upper chest was concave. The scar from Hayes’ delivery a year earlier was still red. It was shocking. The hug that she gave me in that moment literally held me up. Without her I would have collapsed in despair. She supported me and the moment passed.
Our family was in survival mode. During the treatment, my dad assured me that my story would be different than my mom’s story, that the times had changed, that my cancer was not her cancer, and that my ending would be a happy one. But the chance that I would leave these kids was too real.
The kids were little so cancer was not tangible to them in the way it would be to older kids, but it was hard on them. Our routine was destroyed. Clare turned 5 that May. Clare is amazing, full of life and vigor. She fights for what she wants—and at age 5, she wanted attention, sweets, and TV. People were coming and going. Everyone had different tactics for disciplining her. And different tactics for spoiling her. Presents, ice cream, pedicures. It was so confusing for her.
Hayes was a baby. After the surgery, I couldn’t lift him out of his crib. I couldn’t hold him. I stopped nursing him. I felt as if I was abandoning him. In August, after my chemo had ended and I was feeling better, I was on a walk with Hayes and Sam. Hayes wouldn’t come to me, and Sam said, accurately, “He doesn’t trust you anymore.” My heart was broken.
But then, moment by moment and day by day, we rebuilt our bonds.
During my cancer treatment, many people suggested that I go back to work for at least a year and a half, to find normalcy again. This was great advice, helping me to put other things besides cancer on center stage. But in June 2015, about four years after the diagnosis, I packed up my desk and headed home. I really wanted to be with my kids, to raise them, to mother. I felt that I was missing too much. We’ve spent the last year living normal lives—doing homework and extracurriculars, lounging, traveling, bickering, cooking, exercising. It has been a great year, filled with bumpy life.
My health has been good, and my trips to the cancer center have slowed down. Cancer still has my attention (when I had a stomach bug recently I asked my husband if he thought it could be metastasized cancer—he didn’t), but it is not the focal point. It is part of my story, not my entire story. It is my story, not my mom’s story. And I am thankful for this.
Spring 1997
I eye up the worn and tattered catcher’s mitt 20 feet ahead. It’s a warm May morning and the elementary school bus is coming down the street in 10 minutes. But, more importantly, baseball season is finally here. Mom is down in the catcher’s stance, “Fire it in here!” she shouts and then grins at me as I start my wind up. I pull my gloved hand up to my face and tuck my right hand in, resting the ball in the heel of the glove. I take a short step to my right and shift my weight slightly over my right foot. I swing my left leg up high and, pushing off my right leg, send everything I’ve got into the pitch, whipping the ball at mom, as she squats in the grass with the mitt held open wide. The ball smacks into the glove’s weathered pocket with a “Crack!” “Isn’t that the best sound, And!?” she exclaims, firing the ball back to me and readying herself again. We have to get 10 pitches in before the bus comes. There is no secret to being good at something. You just have to love to practice. That is her philosophy. Now it is mine too.
January 2011
It’s now junior year of college and my morning routine has shifted away from baseball. Now I get up, eat oatmeal, and review notes before class. Fewer “heaters”, a lot more books, but the same philosophy: love to practice, love to learn. I write frequently in the journal I keep on my computer. So far it is mostly ramblings -- on my dying faith in the Catholic church (what’s the point of God?), on my breakup with my high school girlfriend (what’s the point of love?), on my fascination with cell biology and chemistry (what’s the point of studying anything else but the pure molecular basics of life itself!?)
In this moment, my relationship with cancer is so ordered and neat and sterile. It is a series of PowerPoint presentations in air-conditioned classrooms. A set of logical experiments, producing clear data from which succinct conclusions are drawn. It is graphs and figures and tables and genes and proteins and signaling pathways. I have a poster outlining all the known cellular pathways that contribute to cancer on the wall beside my bed. Cancer biology is what I do, not something I fear.
April 2011
That ordered, neat, sterile, intellectual relationship with cancer collided with the powerful, unpredictable, emotional, force of real life on a beautiful spring morning later that semester.
I am home for the weekend from school, with my mom. Our morning ritual is to have a cup of Irish breakfast tea together. Always with a splash of evaporated milk and a half teaspoon of honey. We started this in high school when she was teaching 9th grade and I would hop a ride to school with her each morning.
I made my cup and walked out to the back porch where she was sitting, her mug beside her, at our small wrought iron table. If that table could talk, it could tell the entire history of our family. It has sat on the cracked slab of concrete we call the back porch ever since we moved in on Evelina Road
“Good morning, Andrew” my mom says as she smiles and looks up at me from the crossword puzzle, looking not quite her usual chipper, enthusiastic self.
I don’t remember exactly what we talked about at first, but, eventually, she said to me, “I’ve got some news, And. I went to get this thing on my leg checked out and they said I’ve got some bad cells.”
To me, immersed in a Cancer Biology class, bad cells equal cancer. No need for further description. I just took an exam on this very topic. How ironic is that? “Bad cells” stop doing their jobs. “Bad cells” disobey orders. “Bad cells” exhibit the 6 characteristics of cancer, which I can hardly remember in this moment.
“What did the path report say?” I ask. “What kind of cells? How fast are they replicating? What stage is it?” In this moment of internal turmoil, I grasp for what is familiar to me – the science and the cells -- rather than looking for what might be helpful for my mom. She recognizes my angst and -- despite the fact that she received the diagnosis, she will receive the treatment, she will be confronted with her own mortality in the coming weeks-- she opens her heart and comforts me.
June 2011
You would never find mom inside on a sunny day. She’d be ticking off miles walking all over town with her best friend, hitting the tennis ball with a fellow teacher, or kneeling in the garden behind the house, back bent, hands covered in mud, transplanting some black-eyed Susan’s or pulling weeds. But on this “glorious summer day”, as she would most certainly have proclaimed it, there she was, inside. She was curled up with blankets in her bed, her hair, frizzled and wild, pushing out over the covers. She was now a few weeks into interferon treatment for her cancer. On the days of her infusions, she collapses into bed with chills and whole body aches. It’s jarring seeing my mom so visibly weak. She could not help the shivering. She could not bite her lip and just power through the aches. The interferon was pummeling her and I hated the medicine for doing that, even though I knew, theoretically, that it was helping. I went into the room and wrapped my arms around her without anything to say.
Eventually she completed the treatment and the chills and the aches stopped. The scans came back “clean”; but that might have been the easy part: getting cancer off the scans. The real hard part is getting it off your mind. Mom told me that the greatest challenge after treatment is not becoming obsessed that every headache or cold, sharp pain or little rash is a sign that the cancer is back.
For the rest of us, at least superficially, things seemed to be “normal” again. We didn’t really talk about cancer. We didn’t use the term “remission”. We just assumed “cured.” It was logical. Plain and simple. Mom had cancer. Mom endured the treatment. Mom beat it. Like we knew she would. We could all move ahead with our lives now, thank you very much.
April 2015
Until last spring, April 2015. She went in for her yearly PET scan. She came back with “findings” that needed to be explored with a biopsy. “This really is not happening,” I remember thinking to myself, “Why not?” came an internal reply. The worst was confirmed: metastatic melanoma, stage IV cancer (“That’s the last stage,” I remember telling my older brother when he asked me how many stages there are).
September 2015
Now I’m in the first year of medical school. Tomorrow we will be talking about melanoma in class. I am doing the reading to prepare and I come across the survival statistics. Odd that I have never actually looked this up myself before. The five-year survival rate for a person with stage IV lung metastases is 17%. I stare at the accompanying figure, a Kaplan-Meier survival curve. Looking out at the 16-month marker on the x-axis: not many survivors. Were all those dots on the chart really someone’s mom or dad, or brother or sister? I keep reading, “Malignant melanoma is the cutaneous neoplasia with the greatest mortality rates and one of the malignancies with the highest potential of dissemination. The prognosis of patients with metastatic melanoma is grim…” Time for a shower, I think,. Enough studying for tonight. I walk down the hall of our dorm in my sandals, head straight to the showers and turn the water on hot. I get in and stand there for a few moments, letting the water pour over me. “The prognosis is grim,” I think to myself, “17% survival at 5 years.” “Shit,” I whisper. I am hit with this longing to see my parents and be with my brothers. I picture my mom’s funeral. My brothers carrying the casket. I picture my dad speaking at the wake, thanking everyone for coming. There’s my mom’s sister and brother. There’s her best friend. There are her nephews waving goodbye to her. I picture my mom on the back porch with a cup of tea, looking toward the sun. The hot water runs over me and I weep. I cover my face, but what is the point? I can’t stop it; the tears flow, falling off my face, joining the water droplets from the shower, crashing into the tile and falling down the drain. I want to follow them down there.
September 2016
I pull a mask over my face, slip a pair of gloves on while I make my way over to the metal table to join my classmates, who are peering over specimens while a pathology resident asks a question: “What do you guys think this person died of?” I pick up the cold tissue in my hands. Definitely a lung, though it is collapsed now, greyish-tan color – bland, lifeless. The tissue is dotted by small dark specks, some as small as a pencil’s tip, others the size of its eraser. I roll these little specks through my fingers. They are smooth, but irregularly shaped. They are hard and stick well to the tissue. They are uniformly black. “Is that from smoking?” a classmate ventures. “No, but good guess!” the resident replies excitedly, “That black stuff isn’t from particulate matter. Think about what cells can make that sort of pigment.” Another student speaks up, “Skin cells. Melanocytes produce pigment!” The resident, who nods in approval, concludes, “Yes, this patient died from metastatic melanoma.” The group shuffles to the adjacent table where diseased kidneys await us. I stand with the melanoma lung in my hands and roll my fingers over the small bumps again and again.
As a medical student, I’ve learned enough to fear diseases like cancer, by studying their pathology, watching tumors excised from abdomens in the operating room, or as I did recently, holding the nodules of metastatic melanoma in my hands.
But as a son, the disease is not so much what I’m afraid of…loss is. The cellular morphology isn’t scary. Even the scans aren’t that scary. The thought of being without someone irreplaceable, like my mom, is what is terrifying.
Sometimes I try to live only as the medical student, sometimes only as a son. This experience, I’m learning requires both, and, as a great poet has said, the only way forward it seems, is to live like the river flows, carried by the surprise of its own unfolding.*
* John O’Donohue
Read more from Medical Student Voices here
Learn more about the Community Voices and discover more empowering health stories here
Andrew is a second year medical student at Harvard Medical School.
On September 28th, as part of HUBWEEK 2016, Health Story Collaborative hosted one of our Healing Story Sessions at the Paul S. Russell, MD, Museum of Medical History and Innovation. Healing Story Sessions are live storytelling events founded on the belief that story sharing is healing. In preparation for these sessions, we work closely with participants to construct their stories of illness and healing and to become comfortable sharing their stories in spoken word in front of an audience. Typically, story sharers invite a group of community members to witness their stories in a safe and supportive environment. On September 28, in a departure from our norm, we opened the event to the public.
We had three courageous story sharers. In the coming weeks, we will feature the written stories and the accompanying videos from the live event. We encourage you to read and watch.
As our first feature, we bring you Michele Foley. Michele is living with Stage 4 Melanoma. Her story is brave and beautiful. For the event, she shared the stage with her son, Andy, currently a second year Harvard Medical School student. Stay tuned for his story next week.
By Michele Foley
Andrew reminds me of a story I often forget. It is a story of becoming stronger, forgiving myself, laughing at myself, connecting with others. He reminds me -with his questions and focused listening -how sacred it is to share in someone’s story. I thank him for his sublime attention to my medical experience over these years. His willingness to be so involved inspires action within me, and action from others. He wraps his positive energy around me—and he might not know till now, how he has held me together and kept me walking forward.
2010 At crossroads in my life. Our answer to the empty nest? My husband and I take flight ourselves- new college jobs in the Southern Allegheny Mountains of rural Pennsylvania. Initially empty nest for me is filled with a sense of loss for what I called home: 28 years of memories with our three sons, close friends, a high school teaching routine. Change evokes a gut-wrenching ache. Where is everyone I have been centered on for the last twenty-nine years? I am off-balance. Why is my reaction to withdraw and isolate myself? Why cling to the familiar, and long for what has been? “Give yourself time,” my sister reminds me. Time to listen, pay attention, so I start to open my eyes to my new world. I drive back and forth every day, up and down the Cresson Summit, 2,430 feet above sea level. I notice massive cloud formations, September blue skies, sunsets, stars, and moonlight with magnificence like never before. College chapel bells bless each hour, adding sounds familiar from my neighborhood as a child that bring comfort. Let this new adventure be an example of what I want to tell others: get up, get out and walk boldly into your life. “Shine on,” those chapel bells sing. And so we do. Poet Nina Bogan’s lines capture my feeling then:
When I walked up the road, the string sack
Heavy on my arms, I thought
That my legs could carry me anywhere,
Into any country, any life…
One year later I am rambling back on the train from NYC to the college, to my new home. Sent to the big city to attend the JED Foundation Gala, I finish with my five hours of fun and fancy. I return to work in the train’s quiet car. Answering a call from the surgeon’s office, I step out between shifting train cars, struggling to keep my balance, and lean on the aluminum wall to take notes. I cannot hear the medical assistant’s voice and ask her to repeat and spell the results. I copy her exact words on a remnant scrap and keep it in my hand, returning to my seat. I struggle to keep my inner balance. This can’t be good. Exceedingly rare neoplastic cells positive for Melanin A, HMB-45, S-100 features consistent with metastatic deposit. Malignant metastasized melanoma. No. Not this, not now. I am just into my new life. If I don't say it aloud, look at the words scribbled on the paper, I might not have it. I will deal with this myself. Alone. No one else needs to get upset or derail their lives. Not so much sorry for myself, I feel sorry that I must begin to tell family about this. Once I disclose the diagnosis, I will have no control over others’ reactions. I don’t want to be the reason my husband is upset, my sons are sad.
I return the next day to have sutures removed. Maybe there is a mistake in the lab report. Staff stare at me as if I am dead. Even the surgeon gives me a hug, “god blesses” me, hopes I have my “things in order.” I can't leave fast enough. I bolt to my car, roll down the windows in the sweltering Ford, sit quietly, and notice bells dreadfully tolling the noon hour from the nearby rundown cathedral. “For whom the bells tolls, it tolls for thee.” Doomed, done, those bells keep telling me.
Surgery tolls. Driving to the hospital, I command my husband a la ultimatum. “If they can remove the cancer completely, but need to take my leg--fine. If they go in, the cancer is everywhere, lymph nodes and all, keep the leg intact and let it be.” Not long ago I felt “my legs could carry me anywhere.” Foolish to think I am in command. Come, Holy Spirit, fire me up. Keep me warm as I shiver pre-op. I ask for boldness of heart, I ask for patience with the unfolding of life, I ask for joy. Come what may. Good thing I memorized it. Pre-op needles in, monitors beeping, it all signals solemnity.
Post op results – Tumor exceedingly rare. We have never seen this (tumor type) before. So I am “one in a million?” Ah, it makes my stomach ache. Can’t this be ordinary? Please no, not exceedingly rare.I like to think I am one in a million but not like this!
My bubbly Brazilian surgeon exudes optimism and hope. I try to share his outlook. It lasts three days. Floodgates open when, with water from the shower, I make my first attempt at loosening the bandage. There it is, a twelve-inch gash spanning my left outer thigh. Raw, jagged, unfamiliar- I begin to sob. My life-long optimism betrayed by this. It felt like I was being mocked--ha-- “my legs could carry me anywhere.” I was going nowhere. I was heading straight to the Interferon lab.
“Give yourself time to heal,” my son Matt coaches. The scar healed; I started to fall apart, needing constant reassurance that all of the cancer was removed, margins clear and everything under control. Guaranteed, right?
Patient patient I am not; setting new goals helps. I will walk again without a hitch. I will wear long pants forevermore. I will never go to the beach again, only to be mocked by the sun. I, I, I, now seems silly. Pace myself? Who am I kidding? My body will let me know. Let go. No control. Let it, allow it, flow with it. Practice it. Make it my practice. Learn again. Again and again. Work to get my balance back. Identify what gives me strength, go after it. Slow and steady. “Take your time,” my husband reminds me. This is not a race.
2011. 2012. 2013. 2014. 2015 No evidence of metabolically active recurrent or metastatic disease. With each checkup I move a little closer to lightness of being. The remarkable feeling of seeing reports that deem organs “unremarkable” brings a smile. My ordinary life swings back with tutoring, teaching, editing. I act as if the summer of surgeries is a distant past. Deep within though there’s the tolling. I am aware of time ticking both in my head and heart. It counts the time I may have with my people; it counts the time until the next scan. I try to remind myself: Be open. Be alive. Pick up what is right there in front of you--this gift!
2015 Routine PET scan reveals spot on left lower lung. I feel that shot to the gut again. Unfortunately default mode kicks in. I go to clinic appointments alone. I go to biopsy alone. My heart pounds. My head throbs. Tears well up but not out. Metastatic melanoma Stage IV. Medical plan RadVac. It is on the move, in my bloodstream, everywhere. I go to radiation appointments alone. My arms hurt. This is too much for me to carry. Our son Matt is getting married to Katie in a few weeks. Wedding bells should be ringing, not the tick tock, chime, timer, bells tolling that my time is up. Off-balance. I steel myself. I will carry this latest news myself.
When will I learn?
I tell my people. It is happening to all of us, our son, Andrew reminds me. We will walk this next part together.
After two weeks of radiation and one Pembrolizumab treatment, wedding bells chime! Our son Tommy, reminds me to feel all the love that fills, overflows in our home. I stand off to the side looking at our yard filled with a circle of love-all of us enjoying a summer eve together. I listen: belly laughing and belching; crickets’ song and sounds of kids. Listen hard. What a fool I’d be to isolate myself from all of this wonder-filled-ness. Balanced and buoyed. I gather strength, more than I ever knew from those who love me. It is the ordinary time we spend that is the best: taking a walk, prepping a meal, pulling weeds in the yard, collecting sweetie tomatoes, icing up a glass of cold water and surprising the other with it. Such comfort in the beautiful ordinary day.
“What’s good?” my son asks, just to remind me.
Along the way, it has been a challenge to find the energy to always begin again: new treatment, new clinics, new procedures, new side effects, new allergies, new story –that is the norm. Gather again and again the beginner’s mind. Inner balance is what I am spending time on, and implementing a plan to keep strong. I begrudgingly take time to attend to symptoms of the pembrolizumab treatment. My sister chimes in, “Be as good to yourself as you are to me, to others.” Only after that can I spin into the ordinary day: tutoring, editing, walking, practicing yoga, humming, being grateful. I am the luckiest person on the planet.
I have imposed only three goals this time around. One, I limit my thought/conversation about the melanoma on an ordinary day to max ten minutes. This includes internet research, telephone conversation, complaining to family. The timer is set and when it chimes--DONE. Two, taper back on daily work--some tutoring, editing continues. Three, tend to the wellness to keep balanced. I admit all that attention makes me weary. No shortcuts. Fresh fruit and veggies, green tea, yogurt, kefir, beans, broth; then start over again shopping and preparing. A cup of tea, a homemade blueberry muffin, good company: today’s recipe for feeling fully alive.
There are a few aspects that I am working on these days.
*What does life as “normal” after cancer look like? Loved ones just want to see the old “me” back as a sign that all is well. Gone, she has moved on
* In my quest to pay more attention to detail, I try to work and stay ahead of whatever symptom is presenting, no matter how small. This self-compassion and self-coaching has been helpful in keeping my brain focused on a plan to affect a better outcome.
* I have pledged full disclosure always to family (in so doing I model what I hope will be same for us all).
* I am terrible about asking for something for myself, so that is my subset of full disclosure. Not edit, sugar coat, back pedal, apologize, or cry. Name it; claim it and move through it. This is applicable from extremes: craving butter almond ice cream to refusing to go to the next scheduled treatment.
2016 Currently, I am on hold after 8 Pembrolizumab infusion treatments. Last scans just in August were straightforward. No new evidence of metastatic disease in the chest, lower left lobe. Nodular component near the medial margin measures 0.9cm and is unchanged since 5/16/2016. There are no new pulmonary nodules. Like Poetry.Details regarding this type of melanoma say it is least receptive to targeted drug therapy. Darn again, that one in a million! The plan is to monitor and report symptoms to clinic every three weeks. No travel. Follow up PET scan. It feels good putting a bit of distance between clinic visits now. So I approach this interim as time to get my second wind. I want to be present to the here (and hear) and now, taking it all in—saturating my sense as I pause often during an ordinary day. I continue to pray to have the guts to be able to “carry” whatever comes next. Not really sure if that points to me or to those I love. No matter. Lately a sense of great freedom is emerging - having faced a bit of darkness. How to get back a bit of the “my legs can carry me anywhere?” Get up, get out and walk boldly into your life. Begin to hit the tennis ball, plant basil, bake Irish soda bread, dab on lavender, walk two-a-days, occasionally buy a good cup o’coffee.
In a monumental turnabout, I have moved from “I have to take care of everyone” to “Good morning glory. Let me gather my strength and be of help today.” I am humming along with guarded optimism, knowing the limits to that I can control. So I have retired from some of my favorite avocations: running my brother’s life, offering childrearing advice, meddling as the smother-in-law, badgering students about Thirsty Thursday when a paper is due Friday, forwarding TED talks to 30 on my contacts list, arguing with my hubby.
Postscript
As the Joan Didion quote says, “We tell ourselves stories in order to live.” The story I tell myself is to get up, get out, and walk boldly into life. Over and over again I realize how lucky I am. Andrew shared with us a quote during his first week at Harvard Medical School: “ Life is short and we have never enough time for gladdening the hearts of those who are travelling the journey with us. Oh be swift to love, make haste to be kind”. This is my avocation now.
This narrative unearthed so much that was unspoken, tucked away, intentionally forgotten. Wrestling with, loving, crying, remembering, speaking, listening, forgetting, and forgiving—all messy indeed. It has been cathartic and calls me to be courageous. As the psalm says, for what has been, thanks. For what is to come, yes.
Health Story Collaborative hosts cool events where patients of all kinds get to tell their stories. I spoke at one event, and afterward, I walked on air and could feel a change in the vibration of my body.
Following my magnificent experience, I was honored to host one of these discussions in my home for a woman named Liz who was diagnosed with ovarian cancer. I didn’t know Liz – she was recommended by Health Story Collaborative – but she and her friends had wonderful energy and sharing her story in that way was as powerful for her as mine was for me.
Though Liz and I had much in common (similar in age, children of the same age, attitudes toward life, cancer diagnosis….), we didn’t stay in touch. Life gets busy, we all have our routines, you have to prioritize your limited energy during treatments, and we each have plenty of friends we already don’t get to see as often as we would like.
This week, I actively wondered about Liz and how she was doing. I didn’t even remember her last name to try and find her email address in my list of contacts, and contacting Health Story Collaborative to find her felt like adding another thing on my list of things to do, so I didn’t follow through. Liz’s well-being remained an unanswered question.
In the meantime, here is how my chemo holiday has progressing.
First and foremost – I love not doing chemo! I love being free from tubes, I love not carrying vomit bags with me everywhere, and I love having a clearer mind. I love having more than two weeks each month when I can do things that one needs and wants to do in life (grocery shop, hair and dentist appointments, kids’ school events, etc.).
Occasionally, I think about my CT scan results. The doctors saw some fluid near the anastomosis (surgical connection of two parts of my intestines that aren’t normally connected). The fluid can be simply nothing or it could mean that the Avastin (which has been working so well for me) may be doing damage to the stitching there. If there is damage, it is inoperable, and a tear in that area would likely be fatal. And not instantly fatal – it would more likely involve a long hospital stay and decline. For the record, that is not my preferred way to die. So if that were the case, that would mean no more Avastin.
I generally don’t look ahead; I mostly assume we will handle whatever comes up when it arises. But when I think about this particular potential conversation with my doctor, I do remind myself that if Avastin is no longer an option, I am lucky to have other options when it comes to chemo drugs. There is another drug, Erbitux, that many friends have taken and one friend is currently taking with successful results. The most notable side effect is a major skin reaction. It looks like you have acne or a red rash all over your body, which is usually uncomfortable. Given how sensitive my skin is on a good day (for example, I have to watch what kind of Band-Aid I use, or which tape they use on my skin at the hospital), I fear that my skin will be especially sensitive to this drug. Besides that, it is unsightly. I kind of like not “looking” like a cancer patient.
Mostly, I try to stay focused on the present. Admittedly, that is easier to do when I am feeling well. The snow is gone and while it has been chilly, the sun is starting to shine, so that helps.
However, I’ve also had many days filled with pain that make it hard to move or even stand, and nights where the pain keeps me from sleeping. Strung back-to-back for over a week, these days feel endless and discouraging.
I realized that I rely on living my life from miracle to miracle and I wasn’t noticing anything miraculous popping up, so that was bringing me down as well.
During that time, I did what I could. I booked more acupuncture. Tom Tam loaned me this device to wear to help with my pain. (I was skeptical, but it truly helped enough to get me up and moving.) I scheduled regular bodywork appointments with a local guru. I resumed calls with my energy worker. I did a reiki session that enabled me to sleep. I read funny novels and watched comedy clips on YouTube. I reframed any negative thoughts that made their way into my psyche.
Absentmindedly deleting junk emails this week, I noticed one about a new drug approved by the FDA, ramucirumab (brand name Cyramza®) targeted for stage 4 cancer patients. It works similarly to Erbitux but with different side effects. Ah, a potential option if I need it. Thank you God. I felt myself exhale.
Then, I went into Dana-Farber for a port flush. (They need to periodically access the port in my chest and flush it with saline to keep it clear and useful.)
I signed in and the woman behind the counter gave me the plastic bracelet with my name, birthdate, and medical ID number. I hate that bracelet and all that it stands for. The port flush went well and, immediately afterwards, I walked through the waiting room, straight to the trash can, and pulled the plastic bracelet off my wrist.
As I held it over the trash can, a woman stopped and said to me, “You might not….”
Immediately defensive thoughts went flying through my mind, such as, Don’t tell me that I might not want to throw this away. Don’t tell me that I might need this for discounted parking. I just want to be rid of this thing…
Thankfully, she couldn’t hear my thoughts, so she continued on, uninterrupted (as far as she knew), “…remember me. I did a talk at your house….”
OH MY GOSH. It was LIZ! I just LOVE it when questions are answered. I didn’t know where to start reconnecting with her – there were so many places to begin!
Well, we were both alive, which seems to be everyone’s first question about cancer patients. She looked good and energetic and still had the cynical edge that made me laugh.
She was back on chemo and today was a treatment day. We talked about parenting through treatments and taking care of ourselves and living with one foot on the path of “I will heal” and the other on the path of “What if I don’t.” We talked about Kripalu. We talked about Tong Ren and Tom Tam and, in that crowded waiting room, I lifted my shirt to show her the device he developed that helps me with pain. (You should know that lifting my shirt also exposes my colostomy bag, but that paled against my excitement of seeing her and sharing something that might help. Besides, in that room, people are dealing with issues larger than the horror of glimpsing someone else’s colostomy bag.)
Running into Liz at that place and time was like a Divine Intervention. She told me that she really needed to see me at that moment, and I couldn’t explain how lifted I was to see her. It helped to restore my faith in the connectedness and purpose of the universe. Her presence helped me to feel like God was listening to my questions and would provide the answers if I can just be patient.
We exchanged email addresses again and while I am not sure how we will stay in touch, I know that our hearts are connected enough to bring us together and inspire each other as we move forward.
Thank you for always being there to inspire and support me. I appreciate your prayers as much if not even more during this break, as it can be scary and painful but also, bearable, with your friendship and support.
Blessings and love and miracles,
Mari
Liz was diagnosed with Ovarian Cancer in 2011, just a few short months after her mother was diagnosed with the same disease. As an oncology social worker herself, she had a lot of experience with cancer, as a health care provider. Then, suddenly, she found herself in the uncomfortable role of "patient" and was forced to re-evaluate much of what she thought she knew. Liz shares her story with insight, humor and honesty. Here, you can watch excerpts from her June 2014 Healing Story Session.
All of our Healing Story Sessions are videotaped, and some of our participants have courageously agreed to have their videos shared on our website. Here, you can watch Marie share her story of living with Stage 4 Colorectal Cancer. Marie participated in our first Healing Story Session in March, 2014. Her story is humbling, moving, and funny. She has amazing perspective, wisdom and a terrific sense of humor. It is worth a watch!
As mother to two young boys who love to watch movies, certain lyrics tend to run through my head, like Chitty Chitty Bang Bang we love you! or You’ve got a friend in me…. from Toy Story.
Since my most recent cancer diagnosis, the lyrics that stick in my mind are from Frosty the Snowman:
Frosty the Snowman
Knew the sun was hot that day
But he said let’s run and we’ll have some fun
Now, before I melt away….
I was initially diagnosed with colorectal cancer when my sons were 1 and 4 years old. At that time, we put our lives on hold for an entire school year while I had surgery to remove part of my colon followed by chemotherapy to kill any remaining cancer cells. Our lives revolved around my healing, and any treatment that might make me well again — like acupuncture or sleep — took priority. While I missed doing many activities with the kids, my husband and I decided that the trade-off would be worth it in the long run.
After nine months, I completed chemotherapy. There was no sign of cancer, and I returned to living my life.
Like many people, being diagnosed with cancer shifted my view on what was important, and I swore that I would never again take life for granted. But one of the beautiful things about living life as a healthy person is that you do get to take it for granted. So, as I returned to health, I also returned to doing all the things that I swore I would never do again. I became easily annoyed with other drivers, got impatient with the kids, juggled too many commitments, and spent time doing things out of obligation rather than joy. Still, this made life feel comfortable and normal, and there seemed to be security in that.
Of course, security is an illusion, and almost a year later, we saw the first signs that the cancer had returned.
Like a lot of bad news, it was delivered over the phone. Though the doctor primarily called to have me repeat a blood test, the request gave me an ominous feel in the pit of my stomach.
I hung up the phone and sat in the kitchen, looking out the window at my boys, now almost three and six years old, playing in the backyard. It was a warm spring day in late May, they were running and laughing, and I realized that, more than anything, I wanted their life to continue that way.
I also realized that I wanted a planter on our back deck, and now seemed like as good a time as any to get it.
I called the boys– we were going on an adventure! They were excited and we drove to the best plant store I knew. I wandered around the enormous planters while the boys amused themselves playing in the water fountains. At first, I tried to keep them out of the fountains, but the sales folks didn’t seem to mind, so I let it go.
By the time I made my purchases, the laughter was bubbling out of their bodies and water was dripping from their clothes. As we got everything into the car, the boys stripped down for a naked ride home and the saleswoman commented that I was the calmest mother she’s ever met. We had a truly beautiful day in spite of the news, and I remember that triumph every time I look at that planter.
The rest of our summer and fall days were filled with ultrasounds, blood tests and surgeries. I had one 2½ hour surgery to remove and rebuild my entire rectal area, followed a few months later by a 7½ hour surgery to remove it all again. This surgery included a full hysterectomy to remove a large tumor growing on an ovary and touching every other abdominal body part, and the surgeon removed parts of the fat in my abdomen where there was evidence of more tumor growth.
Doctors at MGH and at Sloan Kettering told me that both the surgery and the chemotherapy regimen would need go 100% to have a chance of long-term survival. In the last surgery, there was tumor left behind, and we learned that cancer cells were in my abdominal fluid. So we had more work to do.
Only three weeks after that surgery, I started a regimen of chemotherapy every other week. This requires a full day at the hospital having an infusion. Then I go home carrying a continuous infusion pump attached to my chest for two days. The pump comes in a black bag containing chemotherapy; an IV line runs from the bag to a port-a-cath in my chest. Not only does the chemotherapy taste awful and remind me that I am a cancer patient, but it affects how I sleep as I try to keep the line from tangling, and how I shower, because I can’t get the apparatus wet. The kids know that they need to be careful around my body, and I worry that they are less spontaneous with their affection as a result.
I wish I could count down to the end of the treatments, but the doctors soberly recommended no end date.
Though I am trying every complementary treatment I can to get off chemo, it sounded like this would be our way of life for the foreseeable future. I knew that I couldn’t put my life on hold to heal; this IS my life.
It took a few weeks for me to accept this hated reality and the scariness of an uncertain future. I wanted to put the whole package back on the shelf and select a different path for myself and my family.
Slowly, the reality settled in and, while I still resisted it, I gradually tried to view it as a gift. I had time, I was able to be home and not in the hospital, and, other than cancer, I was in good shape physically and had a life I mostly loved. I started to look outside myself. I couldn’t imagine what this experience would be like for my sons. What could I do to help them navigate terrain that few adults are equipped to manage?
Determined to provide my boys with joy and laughter and – if my health took a bad turn, with happy memories of us all together — I started my mission to “have some fun.”
This is easier said than done, of course, particularly when the feeling of illness can permeate your life and be part of your household and psyche.
One night, I vomited every few minutes for six hours (even though I had taken the anti-nausea drugs that day). My husband was out of town, and my mother was staying with us. I couldn’t stop long enough to get her help, and she couldn’t hear me call her. Eventually, my three-year-old son woke up and found me in the bathroom. It makes me both proud and sad that he calmly walked to find his grandmother to help with the situation.
It’s hard to think about “fun” when I must unexpectedly miss a school assembly I hoped to attend or a movie that we all planned to see together. It is now a way of life that the kids accept, but saddens me as I watch them go off without me. As I see them walk away, I wonder if this is what their future will look like, and whether I will get to be part of it.
So, how could we have fun in the midst of all this? How could we have a household that is not permeated by illness, but is instead light and joyful?
Between all the cancer treatments, I was lucky enough to have a series of good days and we ran with them. In a one-month period we took the Polar Express Ride in New Hampshire, celebrated Christmas with extended family in Pittsburgh, went skiing for a week in Stowe, VT, and took a long weekend trip to Disney World. My husband and I traveled to New York (to see doctors at Sloan Kettering) and managed to make that into a mini-vacation with a shopping trip to Bloomingdale’s and a delicious Indian dinner.
In my quest to make the most of my time with the boys, I can push us all too far. In my son’s first-grade classroom, they tapped trees for maple syrup and processed it. Given his excitement about this, I decided that we would go maple sugaring one weekend. I packed the kids into the car and drove 40 minutes to take an hour-long tour, followed by hot dogs. At the end of the adventure, my six-year-old told me, “That wasn’t worth the long drive, Mom. We learned all that at school already, and the hot dogs weren’t very good.”
So I am learning to balance these trips with doing simple, everyday things, like riding bikes, playing restaurant and hunting for rabbits in our back yard. It is hard to know what would be memorable, and how to make the most of every day. I still have moments, even days, when I am not up to activity or even conversation. At those times, I try to remind myself that tomorrow might be worse, and that will make today look like a good day. So I’d better get up and repeat my mantra, the simple lyrics from Frosty the Snowman: We’ll have some fun now…
Originally published on WBUR Commonhealth Blog April 13, 2010
Resources:
To learn more about colorectal cancer, visit
http://www.mayoclinic.com/health/colon-cancer/DS00035
To find information and support resources for patients and families, visit
