The fact that Dominicans of Haitian descent are treated as foreigners in their own country was hinted at before we even arrived on the island. Contemporary Haitian immigrants to the Dominican Republic and prior generations experience racism and economic exploitation on a daily basis. Our Global Health service trip team was mostly white, so this discrimination would not affect me or many of the other students. However, a black girl from New Jersey was warned that if our guagua (bus) was stopped while in transit, she would likely be asked to step out by military personnel in an effort to control immigration from Haiti to the Dominican Republic. Luckily, we avoided this situation, but during my week on the island I observed many occasions of blatant racism that interfered with healthcare access for Haitians.

Each day our team traveled into “bateys” – communities – outside of Monte Cristi to support the local health center and their mission of guaranteeing patients the right to health. In the early 1900s, banana companies established bateys for the Haitians and Dominicans who worked the fields during the day, to provide them with a place to stay overnight. Many banana companies have stopped supporting the bateys, making life extremely difficult for those who live there – fruit pickers have been left without the means to support their families, and the economy suffers.

While I witnessed impoverished living conditions in all of the bateys, the Haitian batey was the most disadvantaged by far. We arrived at 7:00am to the abandoned banana packing plant and quickly transformed the area into a clinic. 30-40 patients were already lined up. Many of them had walked miles. Some of them had no shoes. Others were carrying one child on their back and another in their arms. I quickly gobbled down my granola bar while huddled over; in hindsight, I should have eaten it on the bus beforehand, away from the patients, considering many of them don’t have such easily accessible food.

As a pre-dental student, I had been assigned to spend the morning helping the dentist and her assistant. What struck me most were the Haitian children’s reactions to seeing the dentist, or lack thereof. In the U.S., it is not unexpected for a child to tantrum when propped up in the dentist’s chair. They clench their teeth closed and turn away from the approaching dentist’s hands. They cry for Mom or Dad whenever it’s deemed safe to open their mouth and howl. In contrast, not once at the pop-up clinic did I see a Haitian child fight the dentist. Not once did I hear them scream at the top of their lungs. Instead, often there without a parent, the child would lie on the chair with his or her mouth wide open, totally vulnerable, and not make a move or a sound. The dentist would scan and scrub and scrape, and then the child would sit up, lean over the side, and spit a mouth full of blood and plaque into a cardboard box filled with dirt. There were no stickers to reward their bravery or high fives from Mom or Dad. The kids were sent off with the only toothbrushes we had (boring adult ones instead of the fun, cartoon-themed ones often handed out in the U.S.), and started the long journey home.

I also experienced the impact a language barrier can have. Communication is perhaps the most important element in building a positive doctor-patient relationship. My day in the Haitian batey where everyone spoke Creole reminded me of this. Not being able to greet, instruct, or comfort these patients made me feel helpless. I still remember a middle-aged woman who let out groans so deep I couldn’t help but furrow my brow as I imagined her pain. “¿Qué le duele? / What hurts?” I asked. It was challenging enough to understand the woman’s response as she gritted her teeth and whimpered in agony, but when she answered in Creole instead of Spanish, I was filled with frustration. The language barrier made it difficult for me to clearly listen to or readily comfort her. Fortunately, we had a team of translators helping us. They translated from Creole to Spanish, and then another group translated from Spanish to English. Nonetheless, there was no way for us students or the non-Creole-speaking American doctors to directly communicate with her. I found this to be extremely limiting in assessing complaints and prescribing medicine.

As a pre-dental student majoring in Spanish, I hope to one day be able to combine my passions in order to communicate and empathize with both English and Spanish-speaking patients. My week in the D.R. affirmed the value of incorporating a Spanish language education into my dental career. Had the groaning woman spoken Spanish, I could have reassured her: “You were right to come here. Everything is going to be ok. We are going to help you.”

My week in the Dominican Republic ignited in me a desire to fight for equal access to healthcare worldwide. I will never forget the struggle of those who live in the bateys. Indeed, they will inspire me as I continue on my journey, and I hope to return one day as a practicing dentist. Until then, I plan to serve in my local community, as great disparities also exist in our own backyard.

Rachel is a junior at Washington University in St. Louis, majoring in Spanish and minoring in medical humanities. She aspires to practice dentistry and cultural humility in a medically under served area.

I was sorting through the sea of email, when I saw the Epilepsy Foundation of New England’s posting in purple and black font: Epilepsy Support Group Beyond Medication: A Discussion about Surgery. Though my seizures had been under control for almost three years, I still reviewed the foundation’s notifications. I noticed immediately that all the panelists were medical practitioners. There were no patients on the panel, and I felt indignant about this oversight. They needed a patient in the room – somebody who chose surgery as an epilepsy-treatment option, who could answer patients’ questions firsthand. I felt compelled to be that person, and avail myself to whomever showed up, so I registered, lined up childcare, and marked my calendar.

The event was held on a damp evening last spring. I took the subway to the Charles Street stop. As I navigated the streets in front of Mass General Hospital, I observed the traffic controller directing the EMT’s parking the incoming ambulances. I was struck by the sheer number of personnel required to deal with each traumatic predicament. As I watched, I was immediately brought back to the day I required emergency brain surgery: I had been rushed to this very place, where a neurosurgeon on call performed the operation. I thanked my lucky stars that day was almost three years behind me. Now I was at MGH by choice, on my own terms.
The panel was held in a cramped nearly windowless conference room. I settled into a chair, and looked around the table. The MGH doctors were easy to spot in their standard white coats, and I recognized the third doctor from the Epilepsy Foundation’s website. The fourth practitioner was the nurse who was leading the meeting. The patient turnout was even smaller than I expected: There were four of us, one patient for each presenter.

We each introduced ourselves and I learned that every patient in the room had already had elective brain surgery to try to control seizures. (So much for my good intentions of sharing the scoop on surgery with somebody who was on the fence.) The nurse gave a PowerPoint presentation, complemented by a three dimensional plastic model of the brain. She passed the molding around, and explained the basics about seizures and brain surgery, acknowledging that everybody in the room probably already knew a lot of this information. I suspected she was more disappointed than I was.

The attendees’ demographics were varied – we represented different races, genders, and ages. Only two of us had full seizure-control – myself, and another patient whom I’ll call Marie - and each of us had two different brain surgeries a piece. Marie had initially had a vagus nerve stimulator installed, which entails inserting a silver dollar-sized pacemaker-like device into the upper chest that a neurosurgeon winds around the vagus nerve in the neck. When Marie’s seizures recurred, she resorted to a full-fledged craniotomy, which was successful.

I first had an elective right temporal lobectomy in April 2014. I was seizure free for two months, until my brain imploded due to a subdural hematoma that had developed subsequent to the surgery. A subdural hematoma is like a giant bruise on the thick membrane under the skull, surrounding the brain. I’m still not sure why the hematoma developed. The neurosurgeon said it may have been caused when a vein in my brain got stretched during the temporal lobectomy. But it may have been brought on when I accidentally banged my head against the freezer door, while retrieving the ice cube tray. The emergency craniotomy was harrowing, and brought on a series of grand mal seizures – four in a week. Full recovery took over a year, as I had to take inordinate amounts of anticonvulsants, to control seizure activity. The medications made me lethargic, but over time I was able to titrate them down to something tolerable. Eventually I was both functional and seizure-free.

My neurologist calls my story a success, which feels like a misnomer. While it’s true my seizures were ultimately brought under control, it seems misleading to call a procedure “successful” when it results in a grueling near-death experience. Yet as I listened to the others’ stories – those who had only had one brain surgery, and still had refractory seizures – I felt lucky. One patient also had severe memory loss resulting from the surgery. The other spoke of the disappointment that came with having his driver’s license revoked after the seizures returned. Their journeys are confirmation of surgery’s poignant fallibility.

Brain surgery has a 70% success rate as a treatment option for refractory epilepsy, a percentage most teachers would call C minus. When you get a mediocre grade at school, there’s typically wiggle room to make it up – an extra credit assignment, or retake exam, perhaps. When brain surgery doesn’t work, the only possible option for a grade boost is a second surgery. At best this is a huge undertaking, beset with a multitude of invasive extensive pretests. Yet that is what the neurologist is likely to suggest to a post-surgery epilepsy patient who still has refractory seizures.

When the panelists asked for feedback I piped up, “I think it’s surprising that everybody in the room has already had surgery. I expected there would be patients here with questions about surgery, but we’re all old hands at this.”

“My patients think if they attend something like this, they’re committing to having surgery, and they’re not ready yet,” an MGH neurologist responded. “What advice would you give to a patient considering surgery?” she asked the group.

“I’d tell them that if they’re brave enough to live with uncontrollable seizures, they definitely have enough chutzpah to undergo surgery,” I offered. “I’d tell them it’s a scary, taxing procedure, and no matter how good your doctors are, there’s a lot they don’t know. Also there’s no guarantee of success.” I looked at the others around the room – we were living proof.

Perhaps the doctor would pass my insights on to her anxious patients. One thing I knew for sure: a doctor cannot convey the huge disappointment a patient feels if s/he goes through this procedure, and still has seizures. For the patient choosing brain surgery to treat uncontrollable seizures, there’s a 30% chance of that outcome, making it a significant gamble. They should make that wager only after they’re fully informed about the mediocre success rate, and the ample risks involved, as they are taking an enormous leap of faith. Hopefully, they will make the grade.

Laura Beretsky is a writer who lives in Somerville, Massachusetts with her husband, children, and cat. Her poetry has be previously published in Poetry Motel, and The National Library of Poetry's Moment in Timejournal. She is currently working on a memoir about growing up and living with epilepsy.

One Woman's Story Of "Recovering From Psychiatry"

Laura Delano grew up in a wealthy Connecticut suburb in a family of high achievers. She was a nationally ranked squash player and student body president. But in her teen years, life got more complicated as she struggled with her own identity and felt burdened by the pressures she felt from her environment. She started to act out, cut herself, and was sent to a psychiatrist by her parents. At 14, she was diagnosed with bipolar disorder and prescribed powerful psychiatric drugs, including the mood stabilizer Depakote and Prozac. 

With medication side effects leading to additional problems and “symptoms” which in turn led to more medications, Laura says she began to lose herself. She was defined by the diagnoses she continued to collect: bipolar disorder, borderline personality disorder, substance abuse disorder and binge eating disorder. She was taking up to five psychoactive substances at a time, including an anti-depressant, an anti-psychotic, a mood stabilizer and an anxiolytic (anti-anxiety agent).

Her early twenties were marked by multiple psychiatric hospitalizations and ultimately a suicide attempt. Her only identity was a self-described "professional mental patient."

But then things began to change.

Over five years ago, Laura weaned herself off psychiatric drugs and shed her diagnostic labels. For her, this has been a spiritual journey involving the cultivation of self-acceptance, self-love and honesty. “It is the hardest thing I have ever done,” she says, but she now feels happier, more connected and more engaged in the world.

Personally, I have been moved by Laura’s story. As a practicing internist, I often rely on psychiatric diagnoses and medications. In my clinical practice, I have seen psychiatric medications reduce suffering and save lives. But it has been useful to step back and reconsider my filter on these issues.

From day one of medical training, we are taught to fit our patients into neat diagnostic categories whenever possible. The goal of our patient interactions, we learn, is to sift through and distill all that we see and hear in order to hone in on a diagnosis. This categorization can be helpful in directing our care, of course, but it can also be limiting, and even dangerous. Rarely does a diagnosis fit perfectly, yet all too often in our culture one’s diagnosis becomes indistinguishable from one’s identity. Labels have power.

With mental illness, diagnostic criteria are particularly difficult to define and identify. Truthfully, our current understanding of the brain and the biochemistry behind mental illness is limited. There are no clear markers to measure and quantify. Instead, we must rely on subjective interpretation of behavior.

And yet, psychiatric labels abound. It is estimated that one in four adults, or approximately 61.5 million individuals, and one in five teens between the ages of 13 and 18, meets criteria for a diagnosis of mental illness within a given year.

Laura would say that the medical establishment often miscategorizes healthy struggling as pathology, and that this is especially true in adolescence, when some degree of acting out is to be expected. She believes this is what happened to her.

Today, more than 20% of Americans regularly take psychotropic medications—chemical substances that alter brain chemistry and function, and ultimately emotions and behavior. In 2010, sale of such medications amounted to more than seventy billion dollars in the US, and prescription rates continue to climb for both children and adults.

Again, our scientific understanding of how these medications work is shockingly poor. It has something to do with a soup of neurotransmitters—serotonin, dopamine, norepinephrine—but we haven’t nailed down the exact mechanisms of action.

Can we really say with complete confidence that mental illness is primarily the cause of chemical imbalance in the brain? I don’t think so. Not yet anyway.

Moreover, the list of negative side-effects of these medications seems almost endless—weight gain, cognitive impairment, drowsiness, dry mouth, higher rates of diabetes, increased suicidality, sexual dysfunction to name a few--and studies suggest that long term use of such substances may actually lead to increased disability over time.

Most concerning of all is the increasing and often “off-label” (i.e., not FDA approved) use of such medications in children. For instance, the number of children receiving atypical, or second generation, anti-psychotics doubled between 2001 and 2010. Disturbingly, children on Medicaid are four times more likely to receive these drugs than kids with private insurance. What are we doing to these developing brains? Again, we really don’t know.

I am not suggesting that all psychiatric diagnoses are wrong, or that every one on psychiatric drugs should stop taking them. Even Laura would say that it would be dangerous to stop taking these drugs abruptly, without a lot of planning, personal reflection, and supports in place. I still believe that psychiatric drugs can be helpful at times, and I will continue to prescribe them, but I will do so less frequently and with more awareness and caution.

All of us, and doctors in particular, need to ask questions about our current frameworks of understanding and about our assumptions. Laura’s story has reminded me of this. Every patient is unique, and there is still so much we don’t know.

A version of this story was originally published on WBUR CommonHealth Blog March 16th, 2016. 

Contact Laura: 

Laura on Facebook: https://www.facebook.com/lfdelano

Laura on Twitter: https://twitter.com/LauraDelano

Recovering from Psychiatry on Facebook: https://www.facebook.com/recoveringfrompsychiatry/

Laura's Suggested Resources:

www.madinamerica.com-- Mad in America

www.cepuk.org-- Council for Evidence-Based Psychiatry (UK)

www.beyondmeds.com-- Beyond Meds

www.recovery-road.org-- Recovery Road

Find suggested books here

Chris is a 38-year-old Ph.D. student who spent 10 years struggling with and fighting against his psychotic illness. His condition has been hard to diagnose — it’s been characterized as Bipolar and Schizoaffective Disorder at various times. Regardless of the specific diagnosis, the bottom line is the same: Chris has a lifelong mental health condition. He hears voices, and has suffered from paranoia, depression and mania along the way.

His symptoms started when he was a 25-year-old grad student in New York City. Before that, according to his mother, Eileen, he was extremely high functioning — an excellent student, an athlete and a friend to many. She would never have suspected that her son would become ill. But when he grew paranoid and started acting erratically, Eileen began to worry. Ultimately, when she realized how sick her son had become, she knew she had to act. She quickly learned how difficult it is to get help for someone who is mentally ill but over the age of 18. Eventually, after multiple frustrating and unsuccessful attempts to get Chris into treatment, she was told “you need to find three strong men who love him, and you need to go get him, and you need to take him to a hospital,” and this is what she did. Eileen’s story highlights the challenges of navigating the mental health system and of accepting and ultimately embracing her son’s medical condition.

These days, Chris says he is in a different and better place. He has accepted his illness and has learned to manage it with medications, therapy and his support systems. Like any chronic condition, it requires constant monitoring, but he feels equipped to handle the ups and downs and he has become quite skilled at recognizing his symptoms and titrating his medications in response. He is now a Ph.D. student at the University of New Hampshire’s Natural Resources and Earth Systems Sciences program, where he is integrating environmental economics with his background in environmental sciences and engineering. He is engaged to be married and will soon gain a step-daughter. Though his illness complicates his life, he has learned to live with it while maximizing his happiness and productivity.

Unfortunately, and despite much talk to the contrary, mental and physical health problems are treated very differently in our society. We marginalize the mentally ill, and often fail to see the individual underneath the diagnosis. In so doing, we make it hard for such individuals to seek help and to move forward.

Why this double standard? Why the stigma? For many of us, it is easier and less scary to imagine losing physical capabilities than it is to imagine losing control over our mind, even temporarily. In fear, we distance ourselves and see the mentally ill as “other”. This distancing is detrimental on an individual and a societal level. Instead, we should listen and try to understand, and focus on our similarities instead of our differences.

Originally published on WBUR Commonhealth Blog, February 22, 2013

Resources:

To learn more about bipolar disorder, visit

http://www.mayoclinic.com/health/bipolar-disorder/DS00356

http://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml

To find information or support for yourself or someone you care about, visit

http://www.dbsalliance.org/site/PageServer?pagename=education_bipolar

For resources focused on families or friends of those suffering from bipolar disorder:

http://www.heretohelp.bc.ca/workbook/family-toolkit

http://www.helpguide.org/mental/bipolar_disorder_family_friends_support.htm

To listen to more stories of individuals living with bipolar disorder, visit

http://www.nytimes.com/interactive/2008/07/16/health/healthguide/TE_BIPOLAR_CLIPS.html?ref=healthguide&_r=0

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.

The end of the story is this: it is over. It worked. I am grateful.

So why do I feel so traumatized?

I grew up thinking that breast cancer was my destiny. Inevitable. A foregone conclusion. My mom had it and so did her mom and so did her aunt. I was doomed.

So when I was diagnosed with cancer this summer, I was, well – shocked. Because I had lymphoma, not breast cancer. And it was the best kind of lymphoma ever – the slow growing variety that my doctor said would not kill me.

Call it cancer lite.

Still, it was recommended that I get 6 treatments of a combined chemo (Bendamustine) and monoclonal antibody (Rituxan) to target the nasty B cells that were taking over my abdomen. Reluctantly, I signed up.

The treatment was said to be well tolerated and I would not lose my hair. I’d probably gain weight because of the steroids. I could still eat fruit (wait – why wouldn’t I be able to eat fruit?) as long as I washed it for one minute. Think about that. A minute is a looong time to wash a nectarine. I could also go to the dentist for a cleaning, as long as it was right before a treatment cycle began. I would be more sensitive to the sun (how is it possible to be more sensitive than I already am?) and could not take ibuprofen or aspirin because of concerns around bleeding. Hmm…Tylenol has never touched any pain I’ve had. And I had to call if I got a fever of 100.4 or higher. I would be immune-suppressed and vulnerable to illness.

This was starting to get scary.

Each treatment was two days. Treatments were 28 days apart. Like having your period, mom said my daughter. Day one was almost a full day and day two was about half a day. I would sit in a Barcalounger and could bring one other person with me.

That first treatment was, well, awful. I had to start a drug to prevent tumor lysis syndrome (lisoprinol) and steroids (decadron) a few days before. In addition to the steroids and lisoprinol and the two treatment drugs, I got Tylenol, Benadryl, IV Pepcid, and two long-acting anti nausea medications. Both days.

When did medicine switch from treating symptoms to preventing them?

The treatments were Thursday and Friday. That weekend, I felt drugged and out of it. My brain didn’t work, my body felt inhuman. I smelled like a Superfund site and I felt like a drug addict. The anti-nausea medications constipated me. For days. The steroids made me feel like, well, I was on steroids. I walked several times a day with an aggressive energy. My house was never so clean. And when, as directed, I stopped taking the steroids, I could not get out of bed. I was completely flattened.

I slowly climbed out of that first hole. I felt anxious and eyed food with suspicion. Favorite foods made me queasy – coffee, anything dairy, carbs, sweets. Kind of like being pregnant again. I lost 20 pounds that first month. I lived on well-washed fruit. I crashed at 9 pm every night. I saw germs everywhere and washed my hands compulsively, avoiding hugs, handshakes, and the cat litter box.

Before I was to begin my second treatment, I was told I had to have a central line – basically access into a big vein because the chemo was an irritant when given through a small vein. I was told it was for the comfort of the nurse and that I couldn’t receive treatment without it. Really? I had read about portacaths and had told my doctor I didn’t want one. So for my first treatment, I was given the IV in the teeny tiny veins in the back of my hand. Sure enough I got some phlebitis (inflammation of the vein with swelling and pain).

I almost bailed at this point. I was working with two oncologists at two different hospitals and one of them told me that her hospital did not require a central line for this drug and that the nurses could evaluate my arm veins (which are huge) if I wanted. But that would mean driving 30+ minutes to each treatment, back and forth. Proximity won. I stayed with the hospital that was a 10 minute drive from my home. And I had to make my choice.

My choice for central access was either a PICC or portacath. Look them up. Everyone likes their port. Most people end up with a port, I was told. I knew 2 women who had ports. Neither liked it much. One had a massive infection on her chest which required the port’s removal. The other said that it never stopped hurting.

Neither the PICC nor port sounded good to me. I felt like I was starving and being told I could have dog food or cat food. I had scheduled the portacath surgery and done the necessary pre-screening and special germ-killing washing beforehand. But after talking to the radiologist on the morning of, I decided on the PICC for one reason: he told me that PICCs are used for short term treatments and are good for only 6 weeks. That sounded heavenly: I could have one in for 2 treatments and then get a month break before having a second one inserted. I would need 3 in all. The idea of having surgery to get a port installed and have the nurse insert the IV into my chest at treatment was repulsive to me.

When I showed up for treatment with my newly-installed PICC (which I already hated), my nurse asked me why I didn’t get a port. Everyone likes their port. When I told her I could have the PICC taken out after six weeks, she said that most people keep theirs in for the entire six months. She even doubted what I told her and called down to radiology to ask if they had told me that six week thing. Hmm. Maybe the radiologist told me the six week rule to encourage me to get the port. Everyone likes their port. Well, not me.

Here’s what I didn’t like about the PICC: it was external so I had this very obvious looking medical device sticking out of my arm. I wore a fishnet stretchy covering over it so that it wouldn’t get caught on things. I had to wrap it in Gladwrap Press’n Seal before I showered and my husband (a physician) had to change the dressing every week. Here’s what I liked about my PICC: I only had to have it in for six weeks at a time. Did I mention that?

For the second treatment, my steroids were tapered so that I wouldn’t get flattened. Well, that worked, but I began to lobby for no steroids. And fewer anti-nausea medications. For my third treatment, I had no steroids and only one anti-nausea medication. Still, I felt over-drugged for symptoms I wasn’t experiencing. I never showed signs of infusion reaction nor did I have severe nausea. For my fourth treatment, I was given Zofran for nausea instead of the other two drugs. Yet, I was still not given a choice. I got it in my IV. I wanted no anti-nausea medication. I found that I recovered more quickly and felt overall better with fewer drugs in my system. For my fifth treatment I was given 2 Zofran pills. I took one. No IV anti-nausea meds. Still, each treatment left me feeling crummy for about a week and a half.

The chemo began to show toxic signs in my body: my blood counts were low and I got a mouth sore. My fifth treatment had to be delayed a few days so my counts could recover. I was encouraged to get a shot of Neulasta to boost my neutrophils, but warned about the bone pain it could cause. I settled instead on one shot of Neupogen, about 1/20th the strength of Neulasta. The shot worked and my counts were fine when I went back four days later. Out came that awful PICC at the end of day two.

That treatment turned out to be my last. I opted not to have the sixth treatment because I was in remission after number three and the chemo was starting to have some toxicity. And I didn’t want to have that awful PICC put back in for that last treatment.

Looking back I am grateful that the treatment worked and that I no longer have tumors. But I wonder if the process could have been more patient friendly. Instead of giving every patient drugs to prevent every possible side effect, why not give a choice? Had someone asked me if I wanted drugs to prevent nausea or drugs to treat nausea if I got it, I probably would have chosen the latter. The treatment was not associated with a lot of nausea and I do not easily get nauseous. And why have a blanket policy around central line access? Not every hospital does. I felt bullied and cornered into doing something I did not want to do. Perhaps a larger arm vein or a slower infusion would have been enough to prevent phlebitis.

But we’ll never know.

The experience made me realize that once you sign on for a medical treatment, you step onto an escalator – and, like an escalator it’s really hard to get off. Every intervention brings with it a protocol and sometimes a side effect. You go into it thinking OK, I’ll get this treatment – I will permit these chemicals to be infused into me - because I’m told it will make my cancer go away. You then learn that in order to get this treatment, you have to submit to countless other chemicals, interventions, and scans. It’s like Get Smart – you walk into a door and there’s always another door you need to go through. And another. You never feel in control of your body. You never feel like you have a real choice. Feeling out of control is a huge component of being a patient and for me, it is this element more than any other that causes the trauma that I feel even now, over eight months after the end of my treatment. Allowing patients to participate in decision making around their care – giving them real choices - even if it means more work for the caregiver, can only be a plus.

Debora Hoffman lives in the Boston area, works in a domestic violence agency, and is a climate activist.

Some of the most impactful people encountered in our recovery journeys are our treatment providers. They provide invaluable education, compassion, faith in our capacity to heal, accountability, and the best of them help us relearn how to trust.

I met Kim Wyman, the dietician at Monte Nido Vista, my first night of residential treatment. It was a Monday, the day every week when those furthest along in recovery prepare dinner for the whole house. To bless the beautiful meal they prepared and to cultivate a positive mindset before eating what for some of us was quite a challenge, Kim sang “Amazing Grace.” Her heavenly voice, glowing presence, and palpable joy for sharing this food in community brought me to tears.

Though we only worked together for ten weeks, Kim’s wisdom resounds in my head to this day, guiding me to stick to recovery’s course and reminding me of the healthy ways to meet my needs. In this podcast, she shares some of her perspectives on the process of healing from an eating disorder.

How we feed ourselves is an expression of how we feel about ourselves. Sometimes the most effective way to change how we feel about ourselves is to change how we feed ourselves. Kim considers Recovery to be a process of Recovering Self. She elucidates the different parts of Self that need to be actively, compassionately cared for, and explains how one must separate physical needs from emotional needs (to be seen, heard, witnessed, and acknowledged) in order to meet them all appropriately.

Activating sensory experience is one of Kim’s hallmark methods for recovery. She encourages people to get out of their heads and into their bodies by seeking pleasure, enjoying nature, and cultivating a loving relationship with food through the creative act of cooking, truly tasting food, and eating with others.

Kim explains the 3 tenets of recovery – never weigh yourself, journal, and reach out to others – and also offers advice about how to find the best dietician for you.

In addition to being a Registered Dietician, Kim holds a Master’s in Public Health. She has been working primarily with men and women who struggle with eating disorders since 1997.

Want a glimpse of what opioid addiction really looks like?

Meet Vinnie: a self-described “regular” guy from Revere, Mass., and a recovering drug addict.

Toothless, and 60, Vinnie was prescribed opioids — Oxycodone, Oxycontin, Dilaudid, among others — for a chronic pain condition. Though he says he never intended to abuse these medications, Vinnie became an addict, taking painkillers for 28 years as his doctors kept prescribing higher and higher doses to manage his pain. Listen to his story here:

Vinnie stopped caring about anything except opioids, and finding his next dose of medication.

His marriage fell apart. He missed opportunities to spend time with his only daughter as she grew up. He became estranged from friends. He stopped taking care of his body and lost his teeth, gained 100 pounds, and developed diabetes, heart disease and arthritis. He fundamentally lost his will to live and contemplated suicide.

Ultimately, it was a pharmacist who put a stop to Vinnie’s opioid use by refusing to fill his prescription. After his initial panic, this abrupt end to the drugs led Vinnie to connect to a new doctor, an addiction specialist. His new regimen included a slow tapering of the narcotics and the initiation of Suboxone therapy.

The state and nation are in the midst of an escalating opioid crisis — it’s estimated that 67 Americans died each day from opioid overdoses in 2013, and the number of deaths from drug overdoses was three times that of the combined deaths from car accidents and homicides in that same year.

Just this week Massachusetts Gov. Charlie Baker enlisted medical schools to provide more addiction-related training to medical students. Against this backdrop, Vinnie’s story shows the harsh reality of addiction as well as a path to recovery.

How to fix it? It’s clear that a multifaceted approach is needed, as outlined in an extensive report put out by Gov. Baker’s Opioid Working Group in June.

One element, relevant to Vinnie, is consideration of one of several medications available to treat opioid addiction, including methadone, buprenorphine and naltrexone. Currently, these medications are underused, partly because they are controversial.

Access can be tough, as the majority of treatment centers don’t provide such medications, and many insurers don’t cover them or have strict rules on how and for how long they can be prescribed.

Suboxone, the drug Vinnie takes, is a combination of buprenorphine and naltrexone, a partial opioid agonist to reduce drug cravings and an opioid antagonist added in small amounts in an effort to prevent abuse. This medicine is much easier to get than methadone (patients can take it home instead of having to go to a clinic every day), and it can be used both for medically supervised opioid withdrawal and for long-term maintenance therapy.

So, what’s the controversy? Some argue that use of Suboxone (and methadone) is just replacing one addiction for another. It is still an opiate-like compound, and one that is habit-forming.

In addition, Suboxone has street value. It has become increasingly popular among addicts as a means of curbing opiate withdrawal symptoms, bridging the gap until opioids can be obtained, and perhaps, because there is a market for it, providing an income source to allow for the purchase of more illicit drugs.

Does this mean we shouldn’t use the medication? Data clearly show that medications like Suboxone and methadone are saving lives, decreasing the spread of infectious diseases, decreasing criminal behavior and improving social functioning among addicts. And Vinnie’s story certainly argues in favor of Suboxone. As he says: It gave him back his life.

Originally published on WBUR CommonHealth Blog on September 4th, 2015.

Resources:

http://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/basics/definition/con-20032471

http://www.mayoclinic.org/diseases-conditions/drug-addiction/basics/definition/con-20020970

http://www.recovery.org/topics/find-reputable-opioid-and-opiate-recovery-hotline/

http://www.addiction-treatment.com/find/opiate/hazelton-nd/

http://www.mass.gov/eohhs/images/dph/stop-addiction/recommendations-of-the-governors-opioid-working-group.pdf

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!

Essay by Marie Pechet:

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

http://www.ccalliance.org/patients/index.html

http://www.cancer.org/cancer/colonandrectumcancer/