Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

Traumas, Bruises and Healing

 

By Anne Bunn

 


 

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.

 

Watch Anne’s Healing Story Session video here

 

Hubweek's Healing Story Session With Andrew Foley: Son or Medical Student? Finding Balance With Mom's Cancer

 

We recently featured Michele Foley's piece, Good Mornin' Glory, about her journey living with stage 4 Melanoma. Now, we bring you her son, Andrew Foley, who writes beautifully about navigating his mom's illness while balancing his dual roles as son and medical student.

 

 


 

 

Son or Medical Student? Finding Balance With Mom's Cancer 

 

 

By Andrew Foley


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, Andy!?” 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, Andy. 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 pathology 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, will receive the treatment, and 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

 

 

Watch Andrew's Healing Story Session here.


 

 

 

 

 

Hubweek's Healing Story Session with Michele Foley: Good Mornin' Glory

 

 

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.

 

 

 

 

 

Good Mornin’ Glory

 

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.

 

 

Watch the video of Michelle's Healing Story Session here


 


 


 

Creating Outreach Through Theater about the Opioid Epidemic

 

An Interview with Ana Bess Moyer Bell

 

By Val Walker

 

Ana Bess Moyer Bell is the founder of COAAST, a non-profit organization in Rhode Island that offers arts-based education and therapeutic programing to address the opioid epidemic, aid in prevention education for teens, and continuing medical education for healthcare professionals. She most recently graduated from New York University with a Masters in Drama Therapy. She currently works as a Drama Therapy consultant for The BETES Organization creating and implementing theater-based programs for families of children diagnosed with Type 1 Diabetes. She previously worked as a drama therapist at Access Community Health Center, an outpatient substance abuse clinic, in Manhattan, New York. She held a position as drama therapist at the VA Hospital in West Haven Connecticut, and worked with patients in hospice, cancer treatment, and with PTSD diagnoses. From 2013-2014 she volunteered in San Quentin Prison where she co-facilitated group talk therapy with inmates.

 

COAAST is a non-profit 501(c)(3) whose mission is to create an ongoing dialogue about addiction and recovery through arts-based community-engaged programming. COAAST (Creating Outreach about Addiction Support Together) is a community-oriented organization that helps individuals recognize addiction not only affects the addicted person, but also their family. Their programs use this saying as a guide: “We hurt in relationship, therefore we heal in relationship.”
 
Val: What sparked your interest in doing theater about the opioid epidemic?

 

Ana Bess: I lost my high school sweetheart to an overdose in 2012, which I thought to be an isolated incident. By 2014, three more of my friends died from addiction. I was suffering from the grief of so much loss along with many others around me. There was a feeling of isolation inside this kind of grief because heroin addiction is stigmatized, and often there are feelings of deep shame. From my own suffering I understood that addiction is a family disease, as well as a community disease.

 

2014 was the turning point when I realized something bigger was happening—more overdoses were reported that year in New England, the worst ever. Communities were desperate. We needed to share our experiences in a way that brought families, friends and communities together. Because I knew theater could be a safe place to explore our stories together, I believed the timing was right to start a theater project about this crisis.

 

As soon as I became openly vocal about it on Facebook, it seemed like people came out of the woodwork to tell me their story. I inadvertently became the town’s story collector. From these stories themes began to arise; shame, silence, guilt, scapegoating, loss…etc. Finally, I sat down and teased out all the salient themes, and used them to write the play, Four Legs to Stand On.

 

 

Val: How does theater create a safe place for healing?

 

Ana Bess: Theater does two opposing things, both at the same time: It brings you in so you can empathize with the characters, but it also provides distance, so you see their situation in a larger perspective. Sitting in the audience with the physical distance of the stage, we can be deeply touched while gaining a greater perspective all at once. This happens simultaneously, so we’re participating in an event in real time, while reflecting on it. Theater asks a lot of us as participants, both in the audience and on stage.

 

Val: You say theater asks a lot of us as participants, to feel and react, but also to see the bigger picture more clearly at the same time. When it comes to the topic of the opioid epidemic, what is it about a performance that heals the grief and suffering?

 

Ana Bess: First, just acknowledging people are suffering from being stigmatized, and suffering alone. This very act of acknowledgement connects us. As the story unfolds on stage, we see how this epidemic has separated and divided us, and how we are isolated in our suffering.

 

Val: It’s ironic-- by acknowledging the aloneness of our grief together in a theater, we become connected.

 

Ana Bess: Yes, and by witnessing our own stories, we become more compassionate and empathetic with ourselves. We must start with ourselves. Even subconsciously, we feel a call to action within ourselves.

 

When we go to see a performance we create a supportive community, at least for a brief period in time. This is especially important for people struggling with addiction. Research has shown they are more likely to seek help, enter rehab, and follow through with long-term recovery when they have a supportive community and family.

 

After each of our performances we always provide a 20-30 minute period for the actors to take questions from the audience. Talking together following the performance is a vital part of healing. This offers the audiences a space to process their feelings, tell their own story, and brainstorm what their immediate community can do in terms of social action. We often perform for medical communities, such as Harvard medical staff, the Rhode Island Department of Health, and other healthcare entities. CEUs and CMEs can be provided.

 


Val: I’ve read terrific reviews of your play, Four Legs to Stand On, which toured this fall throughout Massachusetts. Can you tell us more about this year’s highlights with your group, COAAST?

 

Ana Bess: Where do I begin? What all of us as a cast sat with over and over again this fall was the overwhelming amount of loss. Town after town, we were faced with mothers, daughters, uncles, friends, and lovers of those lost to opioid addiction. When we were in Middleborough, there was a mother in the audience whose son had died five days prior to us performing, and I’m not exaggerating in saying that every single person in that sold-out crowd had lost someone to addiction. The devastation this epidemic has caused was so palpable every place we performed, and yet felt so silenced.

 

I learned again the dire need for better and more accessible treatment. Again, over and over, it was glaringly clear how important family and community support is; not only for our addicted ones, but also for those who love them.

 

At our final performance at a gorgeous black box theater in Franklin, one of the audience members pointed to a lack of attendance. If this were another more fashionable disease, he stated, the room would be filled with a line out the door. So, I guess that’s what I’m left with: stigma is still our biggest battle.

 

Val: Where will you be performing in 2017? What lies ahead?

 

Ana Bess: I will be using the performance to teach at some Universities this winter, and we have begun booking already for our spring tour. You can find those dates on our website: www.coaast.org. If you are interested in bringing us to your local community theater, hospital, or school, please contact us.
 
Val: If you could sum up why storytelling through theater is vital for you, what would you say?

 

Ana Bess: I believe in the power of storytelling; it is how we make meaning of our lives. Story is a meaning-making tool. Through performing, sharing and witnessing our stories, we’re able to uncover what it means to be a human being. It helps us feel less alone, less disconnected, and more understood.

 

Val: This is such important work you are doing. I’m honored and thankful to have spent some time with you today.
 
Ana Bess: Thank you. I’ve enjoyed it.

 

Ana Bess Moyer suggests these websites for further reading about COAAST and the opioid crisis:
 

 

LEARN TO COPE, a support network for families coping with addiction and recovery 

 

 

 

 


 

Back to Basics: Medicine’s (Re)Turn to Storytelling

 

Storytelling seems like a strange topic for a daylong event in the middle of Hubweek, a weeklong celebration of “innovation at the intersection of science, art, and technology” in Boston. Innovation implies novelty or discovery, but storytelling is ageless: we are, after all, narrative creatures, hard-wired to tell stories.

 

The panel discussion during Storytelling and the Future of Medicine—the concluding session of Hubweek’s Medical Storytelling event—focused on defining why storytelling in medicine is natural as it is innovative. Featuring Jon Adler, PhD, Annie Brewster, MD, and Suzanne Koven, MD, and moderated by WBUR reporter Rachel Zimmerman, the panel reflected on medicine’s (re)turn to its narrative roots.

 

Despite our narrative nature, modern medical practice has minimized intimacy of caregiving and storytelling. To an extent, modern technology has dehumanized medicine and, in its turn, muffled the patient’s voice. Clockwork appointments leave little time for interpersonal exchange. Diagnostic technology lets the body speak for itself. As a result, patients feel dissatisfied and isolated, and caregivers burn out.

 

While medicine and storytelling are staged as opposites, their relationship is complementary and vital: health and healing are possible only at their intersection. Where the medical institution has established boundaries or binaries, Dr. Adler, Dr. Brewster, and Dr. Koven have all found remarkable overlap.

 

Dr. Adler, who studies narrative psychology and identity formation, spoke about the ways stories influence our sense of self. Storytelling puts both routine and extraordinary life events into context. Our life stories are mutable: we are constantly contextualizing and re-contextualizing our lives. Mental health is thus intimately tied to the way we frame our stories and make sense of our their high points and low points.

 

Dr. Brewster’s work as an internist and as founder of Health Story Collaborative are rooted in her interest in human connection. As a patient with Multiple Sclerosis and a medical provider deeply interested in the stories of her patients, Dr. Brewster understands the power of listening and being present. Illness and health challenges are isolating and frightening, and stories can provide moments of connection and relief in the face of such incoherence. The listener is as crucial as the teller precisely because the listener is able to accompany the teller, to be present when everything else seems to fall away.

 

For Dr. Koven, Writer in Residence at Massachusetts General Hospital, medicine and writing were not always two intertwined pursuits. Although she is a lifelong reader and writer, Dr. Koven was trained to separate her two passions. Her view was transformed as she recognized the resemblance between writing and healing and storytelling and clinical practice: stories were key to understanding and caring for patients. What’s more stories give caregivers the opportunity to make sense of their experiences in the rushed and fragmented circumstances of modern medicine.

 

For all three, to understand the achievements of modern medicine is to understand its shortcomings. Medical advances have come at the cost of human connection and storytelling, and patients and physicians alike have expressed their dissatisfaction at the structure of modern medicine.

 

Dr. Adler, Dr. Brewster, Dr. Koven, and Ms. Zimmerman refuse to settle for medicine’s isolation and thus turn to storytelling as the necessary solution. For each, their return to storytelling is as radical as it is natural.

 

Healing Art Archive: Elizabeth Jameson

 

   

 

 

By Elizabeth Jameson, multidisciplinary artist creating at the intersection of art, science, neurotechnology, and disease.

 

I am an artist based in the San Francisco Bay Area who specializes in the intersection of art and science. I focus on brain scans, particularly MRIs, because I consider them one of the primary symbols of Multiple Sclerosis. Since my diagnosis of MS, I have continually undergone brain scans to track the progression of my disease. Initially the sterile black and white images of the MRIs of my brain were terrifying, and I refused to look at them. I began using my art practice to reinterpret these frightening yet mesmerizing images. I seek to disrupt the unsightliness of these digital images, inviting the viewers to stare directly at the beauty and complexity of the imperfect brain.

My diagnosis has allowed me to integrate neurotechnology into my artwork. Through printmaking, mixed media, and textiles I transform my scans into vibrant landscapes in hopes of challenging how society views illness. I create with the intent of transforming how people view the imperfect body, allowing room for celebration, curiosity, and fascination.

My artwork has been displayed in permanent collections at various institutions, universities, and hospitals throughout the country. My heart remains rooted in the narrative of illness. I am now trying my hand at art and design in the clinical setting.

 

I have been inspired by the power artwork can have to broaden and deepen the narrative around chronic illness. This is the core of my mission, to create artwork that encourages social engagement and spurs conversations. My vision for several upcoming projects combines patient-centered design strategies, evocative artwork, and powerful narratives. I am currently exploring how art, storytelling and technology can be used to revolutionize the untapped potential of time spent in waiting rooms of clinics.


At some point in our lives, we all become patients and are challenged with accepting illness as a part of being human. Chronic disease is an ongoing natural disaster of the body, where the tsunami is a never-ending undulation of change. This disaster leaves in its wake a real sense of fear, isolation and heightened awareness of the fragility of one’s body. Many illnesses that are depicted in the media have a narrative that has a beginning, middle and end – a flowing arc to the story. But most illnesses, especially those that are chronic, lack an arc or even a narrative that makes sense to the outsider. Sometimes it can feel overwhelming, lonely, or diminishing. I create with the intent to transform this experience and use a medium that fosters connections and conversation. In doing so I aim to open up people’s eyes to see the unique perspectives gained through living with disease.

 

To see more art by Elizabeth Jameson, visit our Healing Art Archive here.

 

Check out Elizabeth Jameson's website here
 

 

Tossed Photographs

 

By Marla Lukofsky 

 

Today I attended the funeral of my friend and neighbor of 35 years, Ms. Enid.

 

No one knew her exact age except for her best friend Ruby, another neighbor here at the Roycroft, our six-storey art deco apartment building that we all lived in.

 

Enid was distinguished and healthy, but dementia grabbed her sensibilities in her last year. Because she was single and had no family, she was sent to a nursing home far away from the Roycroft and her friends, a good forty-minutes drive on the highway.

 

Her death has had a huge impact on me. I miss her tremendously, of course, and her passing has made me reflect upon my own situation. You see, I’m single too. Even though I have my will in place and am relatively healthy (despite the Canadian health system), financially stable, and of sound mind and soul, I’m not sure that my end-of-life wishes will be carried out. Who will be my advocate?

 

I’ve selected two executors, but in reality, in the absence of caring family or friends, I worry that no one monitors the executor. What happens if there’s no one left alive to watch over you and your belongings? Can the executor do anything he/she pleases with their client’s estate, body, burial, and belongings? It seems the courts only step in if someone blows the whistle.

 

Enid’s funeral service seemed designed more to please the needs of her estate lawyer than to please her. When I asked him where Enid wanted to be buried, he admitted that he had never asked her. Her ashes were to be shipped two hours away to a cemetery where he believed her parents are buried. I asked him if Enid wanted to be buried with her parents. He said he hadn’t asked her. How could that happen, I thought?

 

Interestingly, Enid did have the wherewithal to state that her obituary NOT print her age. Good for you, Enid. Age should be irrelevant, and besides, it’s no one’s business.

 

These days when we hear a person’s age, assumptions form. An older person is rarely thought of as being or having ever been vital, skilled or talented, and yet, many were and are. While other cultures honor and respect their elderly population, North America seems to dismiss the thought that a senior can be captivating, attractive and interesting. Adding insult to injury, seniors are often referred to as ‘cute’. A puppy is cute. A baby is cute (sometimes).

 

Unfortunately, after a certain age, people become a member of the invisible race. (I should keep that in mind the next time I want to steal something.)

 

Enid's memorial service was different than those I’ve been to, particularly because she had no living relatives, no one to eulogize her life from personal experience, and no one to shed tears the way primary mourners do. I cried plenty when I received the news of her death, but somehow that's not the same thing. Or is it? Enid’s friends didn’t want to speak at her service, so I was asked to say something.

 

I spoke about being Enid’s neighbor for over three decades and what she meant to me. I spoke about the night we spent together one New Year’s Eve, sharing stories while she polished her late mother's silverware, an annual ritual. I spoke about the answer she gave me when asked how she maintained such a close friendship with Ruby for over 60 years.

 

“Two things, Marla…boundaries and privacy.”

 

And I spoke about the best advice she ever gave me: “Take a walk every day, and have a goal for your destination. It could be to buy an apple, or the newspaper. Most importantly Marla, get out and move.”

 

As I looked out into the faces of Enid’s few mourners--just eleven neighbors from The Roycroft, her cleaning lady, and our superintendent--I thought about the sense of community we had created, complete with love, hate, and disparity.

 

When Enid’s memorial concluded and we crowded around her boxed ashes, and fragile-framed portrait, her lawyer asked a painful question:

 

“Does anyone want Enid’s photographs?”

 

Enid's photographs were respectfully scattered about the memorial room as if it was a staged set. We didn’t know who the people in the photos were or their importance to Enid. But there they sat, and what to do with them now was our dilemma. These photos may have been of her parents, or treasured aunts and cousins. We shall never know, now. What we did know was that no one wanted them, not even Ruby (who is also single with no family and 95 years young). Perhaps for Ruby it is just too painful a reminder of what she will miss. I wonder how long she will last without Enid, her best friend, to walk with and talk with and share meals with, especially on Christmas Eve and New Year’s Day.

 

An 8x10” portrait of a younger Enid now sits in our lobby, with a battery-operated votive candle beside it. Soon it will be removed, tossed into the trash and driven to the city dump where it too, will become ashes.

 

Questions swirl around in my mind.

 

Is this how the single population in our society end up? Our once cherished photographs recording our life, loves and lineage all to be tossed into the garbage?

 

What becomes of their worth, their knowledge, and their very existence?

 

Deep in my heart, I know that my photos, articles, and recordings of my careers will also end up in the city dump along with the other single people’s tangible memories. They are nobody’s keepsakes but mine.

 

For now, I’m going to dust off my framed articles of me as standup comic, inspirational speaker, and jazz singer, as well as my photo collection of family members and dogs. I’ll try not to think about what will become of them when I am gone.

 

A common epitaph is: “You Will Live in Our Hearts Forever.” Another popular one is “Gone, but not forgotten.” I’m starting a new one: “Ashes to Ash, Tossed in the Trash.”

 

I’ve learned a lot from Enid’s death. We must all legally prepare for our inevitable passing, and get our specific needs, desires and end-of-life arrangements down on paper, while we are mentally able to do so. And we should have someone outside of the executor’s circle making sure our wishes are respected. Some find it morbid to discuss such matters. The truth is, it’s imperative. I’m feeling a bit low today and I know what Enid would tell me. She’d say “Marla, go for a walk. Pick a goal for your destination. Buy an apple, a newspaper, it really doesn’t matter what. Just get moving. It will make you feel better.”

 

I think she’s right.

 

Marla Lukofsky is an Inspirational Speaker, Comedian, Singer, Cancer Survivor and Writer. Her stories have been published in various medical journals including Cell2Soul. With two TEDx Talks to her credit, Marla continues to share her experiences in the hopes of helping others.


 

 

My Decade of Mesothelioma Awareness Efforts

 

By Heather Von St. James

 

In 2005, at the age of 36, I was diagnosed with mesothelioma, an extremely rare form of cancer caused by asbestos. I developed the disease because as a little girl I used to wear my dad’s coat – the same coat that he would wear to do construction with drywall and demolition work. Asbestos particles would travel back with him on his coat, and from there they got into my lungs.

 

Most people who develop the disease die within 18 months. The really lucky ones make it five years. My story is almost unheard of, as earlier this year marked 10 years of being free of this deadly disease.

 

The last 10 years have not been easy, but they have been a blessing despite hard times. One thing that has helped me get through it all is the work that I have done to spread awareness and educate the public about mesothelioma. I have also spent these last 10 years warning people about the dangers of asbestos, and trying to get the toxic substance banned here in the United States.

 

It is really amazing how many opportunities have come my way because of mesothelioma, especially because, for most people, the disease means closing rather than opening doors. I’ve met so many wonderful people and been a part of so many incredible events. It seems hard to believe in light of my original diagnosis.

 

In 2009, after I had attended a symposium run by the Mesothelioma Applied Research Foundation – a nonprofit organization dedicated to finding a cure for mesothelioma cancer – I became aware of the annual observance of Mesothelioma Awareness Day, started by the Meso Foundation. The idea behind this event is to have a single day when mesothelioma patients, caregivers, advocates, doctors, researchers, and others can take out all the stops and let everyone know about the disease. That day is September 26th.

 

But Mesothelioma Awareness Day is more than just any old awareness day. The Meso Foundation wanted to do something different. Every September 26th, supporters of the foundation-- Mesothelioma survivors, caregivers, individuals who have lost a loved one to the disease, union and industry workers exposed to asbestos--meet in New York City with the goals of coming together, learning together, and spreading awareness. On my first Mesothelioma Awareness Day, more than 50 of us met early in the morning outside of the Today show in Rockefeller Center. We wore the Meso Foundation’s T-shirts, all with large, bold letters, and held signs telling the world why we were there. The Meso Foundation combined this awareness event with a one-day seminar on malignant mesothelioma. Since, my mom and I made have made this an annual tradition. Every year, we attend the events put on by the Meso Foundation, and also take advantage of all New York City has to offer. I love having my mom be a part of something so important to me. Every year is a reminder of how far I have come since my diagnosis.

 

Over the past few years, I have decided to take in some other events to help bring awareness and raise money for mesothelioma research. For example, I have started participating in the Miles for Meso event, a fun 5k run or walk that has grown into multiple races held in several states. I am proud to be a participant again this year, and to be bringing my supportive husband Cam and my beautiful daughter Lily with me!

 

This year, for the first time, I participated in the 6th annual Kayaking 4 Meso event. Although I wasn’t able to kayak myself, I, along with the other survivors, rode down the river in a pontoon! This event, started by my close friend Mark Wells whose daughter is a 15 year survivor of the disease and only 16 when she was diagnosed, (the average age of diagnosis is 60), was held on September 10th, before Mesothelioma Awareness Day, and raised money for the Mesothelioma Applied Research Foundation. There was over 225 people kayaking down 8 miles of the Hudson River from Stillwater, NY, to Halfmoon, NY and there will be even more in attendance. Upon completion of the race, Mark was presented with the “Above and Beyond” award by Melinda Kotzian, the CEO Of the Mesothelioma Applied Research Foundation. A much deserved honor for Mark who has raised well over $50,000 for the foundation. It was so great to finally be there to support him and be there when he received the award.

 

All year long, I attend conferences and events and connect with patients, survivors, advocates, and others as much as possible. Back in the early years of my cancer survivorship, I even started my own observance on February 2nd that I call Lungleavin’ Day, as it marks the anniversary of the day that I had one of my lungs removed – an operation that saved my life. It started out as a small get-together with a handful of family and friends, but has since grown into an event that approximately one hundred people attend. We all write our fears on plates and then smash them in the fire to show that those fears cannot conquer us!

 

I know how lucky I am to have survived so long. I still sometimes struggle with strenuous activities, but this hasn’t kept me from getting out there and doing all I can. Ten years ago, when I was having a lung taken out and getting chemotherapy and radiation, I never would have guessed that I would have so many opportunities to spread awareness about my disease in order to help others.

 

I’m not writing all of this to pat my own back. I’m writing it in the hope that it will inspire others to get out there and spread some awareness of their own, about mesothelioma and the dangers of asbestos, or about some other rare disease or condition that has affected your own family. The important thing is just to get out there and make sure others know about it!

 

 

Heather Von St. James is almost an eleven year survivor of mesothelioma. After she finished treatment, she realized her new mission was to raise awareness for this rare cancer. Her passion is to give hope to current patients, as well as lobbying for the ban of asbestos.

 

You can learn more about Mesothelioma Awareness Day here.

 

If you would be interested in writing your Mesothelioma story, please share it with us at abrewster@healthstorycollaborative.org

 

Beating the Risks of Chronic Pain: Avoiding Addiction and Suicide in Chronic Pain Sufferers

By: Steve Johnson

 

Living with chronic pain so severe that it impacts the ability to attend school, work, or carry out general activities of daily living (ADLs) is an unfortunate reality for many people. Chronic pain is sometimes managed – not cured – with the use of prescription painkillers.

 

 

However, the use of addictive medications, even under the guidance of a physician, can lead to addiction and its consequences, including suicide. While studying chronic pain in medical school, I met a woman with severe arthritis. A hairdresser for over 30 years and a gifted piano player, her life had gotten to be unbearably painful after her medication stopped working.

 

 

Unable to find relief and afraid to go to the doctor (she worried she’d be written off as a drug abuser looking to “score”), one night she couldn’t take the agony any longer and attempted to end her life. Though she was able to make a full recovery – and start more effective pain treatment – I’ll never forget the look in her eyes and the quiver of her voice as she told me that suicide genuinely seemed like her best option at the time. I decided that day to do everything I could to help others avoid this heart wrenching dilemma.

 

The good news is that there are ways to manage chronic pain and reduce the risks associated with the use of prescription pain medication.

 

Communicate with Your Pain Management Provider

 

People suffering from chronic pain may take more medication than they once did to achieve the same relief due to developing tolerance to the drug. Eventually, their physician may refuse to prescribe more medication or higher dosages. In fear of suffering from immense pain or withdrawal, these desperate patients turn to street drugs such as heroin to avoid the pain. In fact, four out of five new heroin users say they first started taking prescription pain medication.

 

Communicating with your provider is key. If you’re truly experiencing breakthrough pain or are fearful of withdrawal, your provider may be able to help you wean off of your medication or offer alternative treatments to ease potential withdrawal symptoms.

 

Know Your Risks

 

It’s not uncommon for people who suffer from chronic pain to have more than one risk factor for addiction and/or suicide. You may also have a genetic predisposition to addictive behaviors, or you may be part of a minority group that has a higher risk of suicide.

 

Understanding your personal risk profile can help you work with your pain management provider to devise a treatment plan that minimizes your risk of developing addiction or contemplating suicide. You may be able to rely on alternative pain management techniques such as acupuncture, for instance, allowing you to take less addictive pain medication to cope with your chronic pain.

 

Treat Your Whole Body and Mind

 

Managing chronic pain if you suffer from an underlying mental illness is only fixing part of the problem. It’s especially important for people who suffer from chronic pain to rule out any other diagnoses such as major depression.

 

While you may be able to manage your pain with pain medication, your other illnesses can exacerbate problems and increase your risk of suicide and addiction if you’re not receiving treatment for those disorders as well. For instance, a person with bipolar disorder may be more likely to engage in reckless behaviors, such as using heroin for the first time, during a manic episode.

 

Ninety percent of people who die from suicide have an underlying illness that is often treatable with proper healthcare. When you pay attention to what’s going on both mentally and physically, you’re better able to advocate for the treatments that will help you get well rather than rely on a quick fix to mask pain that may be better treated by managing the underlying illness.

 

There are even holistic approaches you can try to manage your pain. Though there is still much research to be done to get conclusive results, many people with chronic pain find that meditation and diet changes can greatly improve their quality of life. Maintaining healthy sleeping patterns can also make a positive impact on pain symptoms.

 

Chronic pain is not a problem that should be ignored, even if you have multiple risk factors for addiction or suicide. While you shouldn’t suffer through the daily pain, you also shouldn’t rely solely on medications to ease your pain. Communicate with your healthcare provider, seek treatment for underlying physical and mental illnesses, and be open to trying alternative therapies to potentially reduce your reliance on prescription pain medication to cope, and you’ll be taking major steps for your overall well-being.

 

Steve Johnson has always been dedicated to promoting health and wellness in all aspects of life. Studying in the medical field has shown him how important it is for reputable health-related facts, figures, tips, and other guidance to be readily available to the public. He created PublicHealthLibrary.org with a fellow student to act as a resource for people’s overall health inquiries and as an accurate and extensive source of health information. When he isn’t hard at work in his studies, Steve enjoys playing tennis and listening to his vintage record collection.

 

Image via Pixabay by bykst

 

 

College Voices: Me, My Tumor, and Cancer

 

By Kitty Sargent, Boston College '16

 

A tumor.

 

The first time I noticed “It,” I was looking at my reflection in a dingy bathroom.

 

“Hello,” It introduced itself, “I’m new, but I’ll be here awhile.” It was a lump on my neck, found only because it cast a shadow.

 

“Do you have a name?” I asked, hoping in vain that this time It would answer. Silence, as always, would follow. Just the steadiness of my heartbeat, pulsing blood through my veins—through It, feeding It, helping It grow. Out of my control, yet within me.

 

I bargained with that silence as if it would have made a difference. “If you go away, I’ll go to the gym more. I’ll eat fewer desserts.”

Still silence.

 

“I’ll work harder in school. Go to the gym EVERY day. Eat no dessert.”

 

Still silence.

 

But the bargain felt complete, and the silence less threatening, and Its presence retreated back into the corners of my brain. I carried on, hating the body that put me in this position. Feeling helpless to do anything, yet determined to do something—if I couldn’t control It, I’d control everything else.

 

This cycle repeated for months. Until the first time It broke the silence.

 

“My name is Danger,” It said, “and you should fear me.”

 

“What kind of Danger?” I asked. But my translator, the doctor, didn’t know. It wasn’t speaking clearly yet. The doctor needed to make a personal visit. Needed to cut It open and confront It. Surgery.

 

So It had a name. A vague name: Danger.

 

But I was no closer to knowing what kind of Danger. An urgent one? A false one? “It’s most likely nothing,” the doctor said. The visit would be a formality, just to confirm this.

 

The Danger’s silence was deafening. I went back to bargaining, desperate for more control; more information. My bargaining had me eating too little, working too hard, and stressed out about how to act ‘normal.’

 

I looked like I had it all together, people later told me. Wrong: I was a sad and anxious human.

 

In the midst of these bargains, I learned about cultivating a gratitude practice while scouring health blogs for diet tips. Be grateful, and happiness will follow, the experts said. I wanted to be happy.

 

So I would wake up 5 minutes earlier and list what I was grateful for. My family, my friends…the usual. Then 5 minutes became 10, and I listed more things: the opportunities to attend college, and to live near the best hospitals in the world.

 

One morning, there was something new on the list. I hadn’t planned it. It just slipped out unexpectedly:

 

“I’m grateful for my body.”

 

What?!

 

My body, inhabited by Danger, my elusive enemy? My body, the home of that tumor? No, that can’t be right, I told myself.

 

But then I thought about it. My body lets me run and jump and sing and laugh and love. My body was fighting back against Danger and all his pervasive silence.

Okay…maybe I could be grateful for my body.

 

It became my mantra. Even on days when I didn’t believe it, I expressed gratitude for my body. In the beginning, that was most days. But I had believed once, so I knew I could believe again.

 

The next time Danger broke his silence, it wasn’t good news. The visit that my doctor paid didn’t confirm It was “nothing.”

“I’m sorry, but it was cancerous.”

 

So that’s your real name. Not “It.” Not “Danger.” Cancer.

 

But the name, Cancer, was liberating. While fog had once obscured the path to health, now I had a flashlight, and a map. Now I knew my enemy. How to fight him. How to beat him.

 

I think that I’d known all along that It was really Cancer. It hadn’t felt like a friendly tumor when I first found it. It felt wrong, full of dark energy. Panic and anxiety greeted me whenever I examined It in the mirror.

 

But now that it’s all over, pride greets me when I look in the mirror. My scar is a daily reminder that two surgeries and radiation sent Cancer packing. My body fought back. She wouldn’t let the worst happen because she was strong and full of love. Now, when I run or jump or sing or laugh or love, it’s a victory lap.

 

Cancer wanted to rob me of fully embracing life, but I didn’t let it. There wasn’t one specific moment when I realized that I had really started living; there were lots of small moments that added up:

 

Like on the day I was three months clean, and my friends surprised me with an enormous card telling me how proud they were and how much they loved me. That was the day I realized that I didn’t fight cancer alone for a single moment.

 

Or when I was eight months clean, when I walked out of class at the Sorbonne and realized I was living out a childhood dream, to study in Paris. That was the day I realized that I should continue to dream, because those dreams could come true.

 

Or when I was sixteen months clean, and the leader for a retreat I had agreed to help with kept poking just a little bit more than anyone else had at my feelings about cancer, and I admitted out loud for the first time that I had been scared. That I had pretended I wasn’t so no one would worry about me. That was the day I realized the importance of being truly vulnerable and honest with myself about my feelings.

 

Really living means being aggressively friendly to friends new and old. It means saying yes to pizza AND fries, because life is too short to choose. It means running faster, jumping higher, singing louder, laughing longer, and loving deeper.

 

Really living means I don’t bargain with the silence. I fill it with life.

 

Kitty Sargent is a recent graduate of Boston College, where she studied Political Science and French, and served on the executive board of Real Food BC, a food sustainability group.

 

 


 

 


 

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