Category: Cancer

A day in the clinic: shadowing a physician

Disclaimer: Speaking for myself as an individual in this post, not on behalf of my employer. 

There is a lot to be gained from stepping out from behind your desk once in awhile. I work in the Dana-Farber Cancer Institute’s Division of Development and the Jimmy Fund. Our offices are down the road from the main Institute campus, which is a comprehensive cancer center. I’m fortunate that my responsibilities bring me to the main campus often, but many of my colleagues do not get such opportunities. To help keep our entire division connected to the Institute, every year we have a shadow day where the people who work to raise money to support the Institute  get to shadow someone who works in a different role at the Institute for a morning.

Thumbs up for having a job you enjoy.
Thumbs up for having a job you enjoy.

The shadow assignments can be anything– in the past, I’ve shadowed researchers and the leader of Dana-Farber’s gift shop. Other people have followed members of the community benefits program, patient resources, maintenance, etc. This year I had the opportunity to shadow a clinician as they saw patients.

It is such an intimate experience to sit in on someone’s appointment with their physician. To squeeze into the room with the patient and their family and listen as they detail their concerns and thoughts, looking for guidance and help. I was grateful (and somewhat shocked really) that so many patients welcomed my partner-for-the-day and me into their appointments. I’m not sure that, in their shoes, I could have been so gracious.

The patients’ graciousness was noteworthy, in part because these were cancer patients: people touched by one of humanity’s most daunting adversaries. Their uncertainty resonated and found uncertainty in me.  Sure, I do know a bit about being a patient, but not a cancer patient. I know about cancer research, but from an outsider perspective–not that of physician or patient. This peering into a patient appointment was something new. I knew enough science and medicine to keep up with the conversation, and enough to be able to empathize with the patients, but truly it was an eye-opening experience.

In a morning of novel things, a few stood out to me. One was how quickly the physician was expected to switch from topic to topic. In the in-between moments when we weren’t in the examination rooms with the patients, the doctors darted around the hallways, conferring with the nurses here, with the radiologist reading the patient’s scans there, updating patient records, consulting notes,writing notes, or placing calls to other physicians. There really never was a “down” moment in the four hours that we were there.

For one of the patients that day, the nurse and the physician had different plans for how they intended to handle the patient’s unique situation (another disease on top of their cancer), and they had to devise a single game plan. Knowing Dana-Farber it was perhaps not surprising to see that all voices from the care team got heard, but it was still refreshing to witness.

Something else that struck me about the experience is actually a lesson I learned myself during my own health scare: while physicians are the experts, you need to keep track of your care plan and participate actively. Often patients or their families know more details and the context of the situation than the physician may remember off-hand, especially when the physician sees a lot of patients with similar diagnoses. The task-hopping required of these clinicians makes it impossible to remember all of the things you’ve discussed in prior appointments exactly without prompting sometimes. It’s not imprudent to jog their memory or ask them if they’re sure about something. You can and should question your doctors; if something doesn’t seem right to you, just be reasonable. Listen to their expertise, trust their evidence, but still make sure you’re bringing up your concerns.

It was also particularly interesting how quickly the physician had to change their approach as they went from patient to patient. The patients we saw that morning ran the gamut, and each was in a different stage of their cancer experience. There was optimism of a promising diagnosis alongside terminal cases where nothing else could be done. There were chronic patients and patients for whom the cancer was not their primary health concern. It was fascinating to watch the physician read the room and get a sense of how the patient and their family members were feeling and try to meet them where they were. As with all things, I think there were hits and misses, but, for the most part the personalization of each appointment was a really positive thing.

For me, because I write about forthcoming solutions in the form of therapies, it really felt like I was getting a sense of the meaning of the work. This is what it’s all about: trying to help the people that come for care. I write often about the type of cancer that the patients we saw actually have, so I’m very familiar with the drugs. It was striking to see patients feeling good on some of the newer medications, even in cases where they weren’t going to be cured and they knew it.  Having a good quality of life in the time they have is really significant. You do the best you can with each unique situation, but to at least be able to offer patients the chance to feel better even if you’re not getting them that much more time still felt like a win of sorts. Maybe not the ultimate win, but not a dismal failure either.

I’m extremely grateful to have had the chance to see just a snippet of the work that Dana-Farber researchers and clinicians do. In development, it can sometimes feel like we’re not actually involved in what Dana-Farber does, because we’re just raising the money. The shadow day experience helped me to feel more connected to the fact that everything we do is about helping patients. It was a good reminder of why I chose to work in a non-profit and what drew me to this kind of science writing in the first place. I wanted to be an advocate and an ambassador for science, for a cause, and I can’t think of a better one than this.

The View from the Stage: My Story Collider Experience

On stage at the Story Collider. Photo by Brian J. Abraham.
On stage at the Story Collider. Photo by Brian J. Abraham.

I have very limited experience being on stage. I’ve never been an “all eyes on me” type of person. I rarely, if ever, give talks or speeches for work, and, when it came to theater productions growing up, I was happier in the lighting booth and running around backstage. My on-stage experience amounts to one disastrous talent show where I was supposed to do a ballet routine, spun around once, burst into tears and stood on stage crying for the remaining three minutes of the song. Afterwards kind adults kept coming up to me telling me I was great, and, even at the age of six, I was the person that replied, “no I didn’t, weren’t you watching?!” My only other performance remains my third grade school play, which was called “Project Rescue: Save the Earth” and was about recycling. I played a raccoon. I had no lines.

Given this tremendous wealth of stage experience, I recently figured it would be a great idea to get up on stage in front of a theater full of strangers and tell them all about one of the most traumatic events in my life. Why not?

In the Fall of 2015, I volunteered to tell the story of how I diagnosed my own benign brain tumor at the Story Collider. I’ve been a huge fan of the Story Collider since I met the show’s co-founder Ben Lillie in 2013 and was introduced to the concept. The Story Collider is a live show where people get on stage and tell the audience a true story about science. With this as the founding concept,  the stories cover nearly everything. Each show consists of five storytellers who take the stage for about 10 minutes each. Sometimes the stories are funny, sometimes heartrendingly tragic, but they’re always in some way about how science impacted the teller’s life. The Story Collider also has a weekly podcast, where they publish one of the stories from the live shows.

As the dust was settling from the entire brain tumor episode (around the fall of 2014), I started thinking that eventually the saga would make a great Story Collider tale. I wasn’t particularly ready then to get on stage and open myself up in that way, but I knew that it was something that I wanted to do in the near future. I think there is a lot of power in taking control of your own story and telling it your own way. I also feel like my story can help people by sharing what I went through and maybe even helping someone avoid the same mistakes I made– that’s why I wrote about it after it happened and why I wanted to tell the story publicly.

It took until the summer of 2015 before I felt ready to take the stage, I had been feeling kind of stagnant in the science communication side of my life and thought that getting involved in Story Collider could be a good way to shake myself out of it. Ben connected me with the Boston show’s producers Ari Daniel and Christine Gentry, and together we decided that the story would be a good fit for the December show (there was a Fall show for the NASW conference that I was not brave enough to do.  Strangers are one thing; professional peers are another – hats off to the daring souls who took the stage during that show!)

As I started working out what I wanted to say, I realized that I would have to focus on just a subset of the brain tumor ordeal. There are a lot of different angles I could take, but I decided that the part I wanted to concentrate on was what came before– the two years from when I started to feel sick to when I was diagnosed. I chose this time period for a few reasons: while I was seeing doctors and talking to others about my health, I was really in it alone, so a lot of the story is about what I was thinking and feeling. I wanted to talk about the doctor who got it wrong and the one who got it right.  I wanted to talk about my regrets in those two years. Perhaps the most interesting thing about the entire episode is when I diagnosed myself correctly long before any medical providers did.

Brain tumors are rare, but my tumor was a vestibular schwannoma, which is really rare: 2,000 – 3,000 yearly U.S. cases. Among primary brain tumors (those that arise from the tissues in the brain) the majority are non-malignant (like mine) but with more than 100 distinct types of brain and central nervous system tumors it’s a very tiny pie, being carved up into 100 even smaller little sections. Hitting the bulls eye, and getting the diagnosis EXACTLY right, as a joke, my first time out of the gate is incredible. It’s not that I’m particularly smart or anything, I’m just an informed person who got lucky – but still – hell of a thing, right?

After the show with my amazing co-storytellers. Photo by Brian J. Abraham.
After the show with my amazing co-storytellers. Photo by Brian J. Abraham.

The topic that I was most nervous about covering was my doctors. I know there is a ton of snark out there about how doctors are well trained, and making a diagnosis isn’t as easy as just going to google, and too often patients come to their doctors with whacked out ideas about what they might have. I get that, and I respect medicine as a field, and I know that doctors go through a tremendous amount to get trained, certified, and practice. But doctors are still just people. Highly trained people, with incredibly specialized knowledge, but still, just people. People can make mistakes. People can be dismissive. People can be cruel, and cold. Doctors aren’t above any of this– no one is. But doctors hold their patients lives in their hands, and, when you’re counting on someone to have the expertise necessary to help you, and you trust that they do, being dismissed, when you’re right, is a terrible thing to experience.

I wanted to tell how the medical system failed me at points, but I didn’t want it to be mere doctor-bashing. Yes, I saw a doctor who missed what others with medical backgrounds have told me were textbook signs. But I also had an amazing doctor who understood the significance of my symptoms right away and advocated for me as her patient to get the best care. I also had an amazing surgical team that went above and beyond to take care of me. (I still feel that I owe my surgeon her vacation days back; yes, the hospital’s only specialist in my type of tumor left her vacation to come back and treat me.)  As with all things, there was good and bad. I wanted to make sure both the doctor who dismissed me, and the doctor who pushed me to get diagnosed properly appeared in my story. The choices made by these  two people and how they treated me as their patient drastically and permanently changed my life.

I’ll never know whether the surgeons could have used a different surgical approach that would have saved my hearing if only I had been diagnosed by that first doctor. By the time I knew what I was dealing with, the tumor was so large that, for my safety, a hearing-sparing option was out of the question. If only we had seen it sooner, would it have been small enough? I think it probably wouldn’t have, and I’d have lost my hearing either way, but I’ll never fully know. If my primary care doctor hadn’t been so adamant about getting me diagnosed immediately after she saw me, would I have become unable to move my face? That was a real possibility, and was the reason the surgeons opted to do the procedure right away. If these two doctors had made different decisions, how would my life be different now? I think about that a lot.

That’s the story about science that I wanted to tell at the Story Collider. It’s the story of how I struggled with myself to find the truth that I didn’t want to be real among all of these conflicting forces giving me different information. Dissecting what happened to me in this way is something that I had avoided doing for a long time, but writing my script felt like such a rewarding exercise. It was good to turn all of these things over in my mind, and I think forcing myself to tease out my feelings about the whole thing helped me to come to a more secure sense of resolution about what happened. Sharing the story with a live audience was just the icing on top.

The show was in December 2015, and I shared the stage with four other storytellers: Kaća Bradonjić, Kamau Hashim, Meg Rosenburg, and Abhishek Shah. It was an absolute pleasure to share this experience with them; their stories were all amazing. The theme of the show was “The Art of Losing,” which I thought fit all five stories together perfectly. It was a total rush to take the stage. I feel like my emotions and adrenaline were running so high I don’t really remember the experience. It was like time warping. I just stepped up to the microphone and started talking, and then it was over and people were clapping.

Here is the audio recording of my performance at the show:

Overall it was a great experience for me, and I hope that people enjoy listening to my story. If you aren’t familiar with the Story Collider, I encourage you to check it out. It remains one of my absolute favorite means of science communication. They have live shows in an expanding number of cities, and there is always the weekly podcast – so plenty of opportunities to hear true stories about science.

Lost and Found in the Healthcare System

When you’re a patient in a hospital, you don’t need shoes. You’re not on your feet much, and they’ve got you covered with socks that have little white nubs on the bottom to keep you from slipping. This is why I didn’t notice that my shoes were missing until several days (I didn’t keep track of time very well ) into my hospital stay.

I was in a hospital for surgery to remove an acoustic neuroma (also called a vestibular schwannoma) that was growing on the eighth cerebral nerve running from my brain to my right ear. I’d checked into the hospital unexpectedly. I’d woken up that morning with increased symptoms and had gone to see my doctor straight from work. She recommended surgery the next morning, and wanted me to check into the hospital immediately. She told me to just walk to the emergency department, which was right across the street from her office – in fact for several blocks the area is nothing but hospitals and medical buildings. I walked in wearing my work clothes and a pair of black leather riding boots, and explained who I was and why I was there.

The first few hours after I was admitted were chaotic. There had been a terrible fire in Boston that day. Two firefighters lost their lives, and the emergency department at the hospital where I was treated received several patients from the scene. Since my surgery was unscheduled and my arrival unexpected, no one had clear instructions about where I was supposed to go.

As a patient, you have to belong to someone. A doctor has to say, “I’m responsible for this person”. This is the doctor who signs the forms, and at the end of the day is ultimately in charge of your care. My problem wasn’t that no one claimed me, it was that too many doctors claimed me. I had a doctor from the emergency department, a doctor for my ear, a doctor for my brain, and my primary care doctor attached to my case. There were conflicting stories about where I should be, so I was shuffled around a lot. The problem was that I didn’t fit neatly into one of the categories that medical specialties are divided into. I wasn’t just an unexpected arrival, I also wasn’t an easy to assign case. This meant that the hospital staff who were giving me instructions were themselves receiving conflicting instructions.

My trusty boots, found after their hospital adventure.
My trusty boots, found after their hospital adventure.

In the emergency department I was told I needed to be admitted in a building across the street. I offered to walk (according to Google Maps it’s just five minutes on foot), but was told that wasn’t allowed and had to be transported by ambulance. It probably goes without saying that I felt ridiculous. Once there I was told I actually needed to be in a different building on the side of the street I started on. Again, I wasn’t allowed to walk there, so that meant another ambulance ride. Once I arrived in the right building, I was assigned a room but was taken down for several hours to the imaging department. Finally, I arrived back to the room where I’d spend the night before the surgery. Somewhere along the route, I removed my boots in exchange for the slipper socks. By the time I settled into one place for the night, with 12 hours of neuro-surgery looming ahead of me, getting a hug from my Mom was far more important than the boots. I’d forgotten all about them.

After the surgery, I wasn’t in any sort of condition where I could think about shoes. I spent an entire day in surgery, and another lost in the fog of trying to wake up post-anesthesia. The type of tumor I had affected my balance, so walking was a struggle. A slow, plodding lap of the hallway outside my room, propped up by friends and family was all I could manage. After a few days, I started to pull myself together and remembered the belongings I’d had with me when I arrived at the hospital. My work clothes, my backpack, my grey wool pea coat, my boots. My family assured me they had everything, but when they went to show me, the clothes, bag and coat were there – but no boots. Somewhere in the shuffle, my boots had gotten lost.

For inanimate objects, I relate a little too much to my boots. I was never lost per se, but as a patient if your condition straddles medical specialties you can feel passed around. People are certain you belong to someone, somewhere, they just aren’t exactly sure where that is.

Every time I talk about how I had a brain tumor, I feel guilty. Guilty because that’s not quite accurate, and the science communicator in me can’t help but cringe. An acoustic neuroma grows from the nerve sheath cells that coat the eighth cerebral nerve, which controls your hearing. My tumor was in my inner ear – affecting both my hearing and my sense of balance. To classify my tumor as a brain tumor seemed off to me, after all it wasn’t growing from the cells that make up the brain itself. Yet, it was right next to my brain. Sticking to my brain, in fact. Sticking to my brain in such a way that hours of surgery were needed to get my grey matter to finally relinquish it. It was certainly brain surgery, but it wasn’t just a brain tumor. It was in my inner ear growing on the nerve. This is why I didn’t just have one surgeon, I had two (well, many people were in the operating room). One of my surgeons was a specialist in skull base neuro-surgery for the brain and one was an ear, nose, and throat surgeon for the inner ear. I was very lucky to have both of these doctors on my team.

As much as it was my medical team, I certainly wasn’t the one steering the ship that day. Since I was in an anesthesia induced stupor I wasn’t the team captain – so then who was? Two surgeons of equal standing, each with a different medical specialty, each with their own purpose for being there. Who was in charge? Luckily, my doctors have worked as partners for a while and there were no power struggles over my care, but it did come into question while I was recovering. Whose patient was I? Where did I belong?

The hospital floors were broken up by medical specialty. Did I belong on the neuro floor with the stroke patients? Or did I belong on the ear, nose, and throat floor with the patients having surgery for a cochlear implant? Where was I supposed to be? In the end, the hospital split the difference. My ear, nose, and throat surgeon became the primary on my case, but I spent my time recovering on the neuro floor. They sorted it out, and carved out a niche for me to belong, but the lines weren’t clear. I didn’t fit into the boxes our current system for dividing medical specialties silo patients into.

My boots didn’t fit either. We found out that the reason my boots were lost was because they didn’t fit in the bag they’d given me for my personal belongings. We had everything that had made it into the bag, but the boots had been unintentionally abandoned. When you don’t fit in the box, or the bag, assigned to you, your choices can be limited. You run the risk of slipping through the cracks. You can try to squeeze and jam your way into the appropriate container, but it won’t meet all of your needs. You can try to break out of the box, but you might get left behind. The human body works as a unit. Conditions like mine have effects on multiple systems, and don’t fit easily into a category. Special attention is required to make sure that patients who don’t meet the definitions make it to the right destination, and receive the right care.

Ultimately, the hospital lost and found tracked down my boots and delivered them back to me. They figured out to whom, and where they belonged. With me too, the staff sorted out to whom, and where I belonged. I received excellent care, and all of the support I needed for the effects the tumor had on my ear and hearing and the effects it had on my brain and balance. The whole experience left me wondering though, if we can’t do better than the lost and found? I’m not about to suggest ways to overhaul our healthcare system, because I don’t have any, but if I’d had more than one bag for my belongings (or maybe no bags at all) I might not have lost the boots in the first place.

What I’m Reading: Toms River

It’s been a long time since I’ve shared thoughts about anything that I’ve read. Not that I’ve stopped reading of course, in the past year I’ve made my way through many non-fiction science books that I’ve enjoyed but haven’t written about. I was on a blogging hiatus, but now that I have free time courtesy of the things detailed in this post, I want to rebrand my book review series. I’m not sure book review is accurate to describe the type of posts I write.  While I share my opinions, I almost never write about books I didn’t enjoy and try to avoid negative comments. I do this because if I’m going to write a post I want it to be about something I’m excited about and enjoyed rather than something I disliked. Thus, I feel calling these posts What I’m Reading is better than Book Reviews. As always, if I’ve been asked to read a book by the author or publisher I’ll let you know, though nearly all the books I write about are chosen because they peaked my interest. Even with a new name, I hope people will still be encouraged to check out the books featured in this series.

When I’m reading non-fiction I gauge the success of the story by how quickly I finish reading it. Are the things on my to-do list falling by the wayside because I need to know what happens next? Am I so engaged that nearly 500 pages can be consumed within a few days, or are the pages trickling by as they lull me to sleep each night? Is the book so compelling that even the most technical details are devoured alongside the more narrative elements of the story? To cross the line from “I liked it” to “I loved it” a book needs to meet these criteria. I loved Toms River by Dan Fagin.

toms-river-250x300In addition to being the name of Fagin’s Pulitzer Prize winning book, Toms River is the name of a town in New Jersey. I grew up in New Jersey in the 1990s and 2000s – just young enough to know that Toms River had a stigma attached to it, but not old enough to read the papers or understand why. When I found out Fagin was writing a book about the New Jersey town and it’s epic pollution problem, I was intrigued and quite frankly a little shocked by how little I knew about the environmental disaster that had taken place in my own home state.

As far as states go, New Jersey doesn’t exactly have a glimmering reputation. Since it’s not enough to have to contend with pop culture stereotypes like Jersey Shore or the Sopranos, we also have our fair share of government corruption and industrial pollution. Yet I feel protective of the “Garden State” (when you think of the pollution problems, the jokes just write themselves don’t they?) Where I grew up, on the boarder of Union and Morris counties, was the very picture of the idyllic New York City suburb. It was hard to imagine the state had a pollution problem when surrounded by the manicured perfection of sprawling lawns, parks, and golf courses. Yet, even as a kid, while I don’t remember any specific media coverage I remember the negativity, the impression that Toms River had problems. Until I picked up Fagin’s book, that was really all I knew about it.

While the details of the environmental disaster that played out in Toms River over the course of 50 years may have eluded me growing up I was aware of New Jersey’s distinction as the state with most Superfund sites. On their website the Environmental Protection Agency describes Superfund sites as:

“An uncontrolled or abandoned place where hazardous waste is located, possibly affecting local ecosystems or people.”

The government started designating Superfund sites after the Love Canal case in which toxic chemicals located beneath homes and an elementary school in Nigara Falls, NY started causing health problems in 1978. Toms River made it onto the list in 1983 thanks to the Ciba-Geigy factory, a 1,400 acre site where the chemical company manufactured primarily dyes, but also resins and epoxy. The company dumped waste products from the manufacturing process contaminated with toxic chemicals on the factory property, into the nearby river, and into the Atlantic Ocean from the time the factory was established in the 1950s. Toms River is a beach community, and the toxic waste easily seeped through the porous sandy soil to contaminate the ground water in the area. The groundwater cleanup started in 1996, when I was eight which is why I missed out on the majority of the drama.

Fagin’s book starts out by getting into the history of dye manufacturing. It doesn’t really sound like a topic that would be captivating, but I was fascinated by the backstory behind major chemical companies and how dye became a big business. Tracing the various companies through their founding, expansions, closures, consolidations, and mergers with clarity is a difficult task, and Toms River does it skillfully. I was hooked from the very beginning and as the story developed from the discovery of the chemical compounds used in dye manufacturing through the events that led Ciba-Geigy to open their plant in Toms River I found myself more and more impressed at how sucked into the story I became.

There is a turning point in the middle of the book where the story starts to shift from explaining how the pollution got into the water in Toms River, to explaining the affects of that pollution on the town’s residents namely the rise of a pediatric cancer cluster. I may be slightly biased in how interesting I find cancer epidemiology since I do write about cancer research for a living but I feel like Toms River handles an incredibly complex science with a perfect amount of nuance and explanation. The book even gets into the nitty gritty of experimental design without making me want to skip ahead to just find out the results. The intricacies of the studies needed to prove an environmentally caused cancer cluster became the drama for a big section of the book.

Woven throughout the book are the stories of the people involved from the first dye discovery through the operation of the factory all the way to the legal battle that sprung up once the cancer cluster was discovered. Generally I’d call the human element the narrative aspect of the story, the thing that drives the story forward, but that doesn’t really feel appropriate in this case. The entire thing is a compelling narrative. Still, Fagin does a wonderful job of injecting the story with the personal experiences of the people who lived it. The book culminates with settlement of the legal case regarding the Toms River pollution, and the scientific findings from the studies undertaken to prove that the cancer cluster had an environmental cause. These parts of the story are explained through the impact they had on the families of children with cancer and thus resonate deeply.

I really loved Toms River from start to finish, and recommend it for anyone regardless of your background knowledge or interest in science or environmental issues. It is just a fascinating story, told extremely well.

I’m Back, Back in a Blogging Groove

So, if you are reading this, you’re in a new place! Science Decoded officially now lives here on my main website, and I’d love to know what you think of the design/functionality. The fact that you are reading this also means that I’ve broken my blogging hiatus. I never actually meant to take a break from blogging, but for something that is strictly a labor of love I completely lost heart somewhere in the late spring, and it just cascaded from there.

When I talked to friends and colleagues about why I let the blog trail off into nothingness I most often was met with the assessment that I was having a “quarter life crisis” or and “existential crisis” but crisis feels like a strong term for simply not wanting to do something that I didn’t think mattered. Though I suppose it is somewhat existential and conveniently timed to turning 25 that I took to questioning not only what role I play in this whole science communication ecosystem, but also what the point is of having a blog when so many others exist that seem to have far more purpose and clear direction.

I very much want what I do to have value, and yet it has increasingly felt like I just need to back away slowly from the Internet and stop contributing to the noise. In my most grouchy “get off my lawn” moments, that is what a lot of my engagement with science and other science communicators started to feel like, noise. People with opinions about stuff. You are never going to run out of people with opinions about stuff. Sure, I have opinions about stuff, but who gives a damn? Thinking this way forced me to turn inward and stop sharing things altogether.

So I attended this workshop at MIT

With this situation brewing for months, I found myself invited to a two day workshop hosted by MIT on the “Evolving Culture of Science Engagement.” Fancy, right? Kind of I guess,  it was mildly intimidating and imposter syndrome inducing to find myself grouped together with a fascinating and accomplished collection of science communicators.  Our task was to talk about the myriad ways that people run up against science on the daily – in a closed door meeting. Continue reading