Category: Dana-Farber Cancer Institute

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.

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

Sciobeantown at Midsummer Nights’ Science

sciobeantownOn July 17, Sciobeantown headed over to the Broad Institute in Cambridge, MA to join in on their four week lecture series: Midsummer Nights’ Science. Members of Sciobeantown took to Twitter with the hashtags #broadtalks and #sciobeantown to livetweet the event, which featured a talk from cancer genomics researcher Levi Garraway.*

If you missed the event, a video of the talk called, “Exploring the genome’s dark matter** what frontiers of genomic research are revealing about cancer” is now online. You can also check out Sciobeantown’s contribution to the Twitter discussion with this Storify of the event by Amanda Dykstra. Thank you to the Broad Institute for setting aside space at this event (which filled the room to capacity) so that Sciobeantown could participate!

*Dr. Garraway is a researcher at the Dana-Farber Cancer Institute, in addition to his work at the Broad Institute and Harvard Medical School. I do cover his melanoma work as part of my job at Dana-Farber.
**Using dark matter as a metaphor for the non-protein coding portion of the genome has been the subject of some science writer snark (possibly from me…okay, from me) but the title of the talk is the title of the talk, folks.

Book Review: The Emperor of all Maladies

Due to my new job as a writer at the Dana-Farber Cancer Institute I now find myself writing on a cancer biology beat. I feel like there are two ways to cultivate a beat, either you can grow into a beat by developing the background knowledge and sources over time, or you can be tossed into a beat and have to do your homework very quickly to get up to speed. Obviously, taking a job at DFCI forced me to take my basic knowledge of cancer research to a higher level very quickly.

I still have a long way to go before I’ll feel comfortable with my cancer bio knowledge, but I’ve learned a lot from all of the great articles and books I’ve been reading over the last two months. One of the books I read on the recommendation of a colleague who said it really helped her when she started on this beat, was The Emperor of all Maladies: A Biography of Cancer by Siddhartha Mukherjee. A former DFCI fellow, Mukherjee is a physician, scientist, and writer. He wrote The Emperor of all Maladies in 2010, and it received a tremendous amount of acclaim including the Pulitzer Prize for General Nonfiction.

the-emperor-of-all-maladies-a-biography-of-cancer-1439107955-lVery rarely in a book review do I say that I think everyone should read a book. More often I recommend books with caveats that if you aren’t interested in the subject matter, don’t like nonfiction, have trouble staying focused, etc perhaps you won’t enjoy a book as much as I did. I am recommending The Emperor of all Maladies for everyone, regardless of what you normally read or are typically interested in. This book, and Mukherjee himself, deserve every ounce of praise that has been heaped upon them. There is a lot of information in The Emperor of all Maladies, and depending on how and where you read it might take you a long time to get through. It will be worth it.

I learned so much from this book, not just about cancer but about how to tell a long, complicated narrative in a way that is factual while still compelling. The patient narrative that the book starts and ends with brings a personal touch to the book, but the physicians, activists, and researchers interwoven into the story by Mukherjee also make this a deeply personal story. I think one of the biggest achievements of this book is being able to meld science and history to provide a foundation for the cast of characters that drive home the human impact of cancer.

The Emperor of all Maladies is masterful at doing something that so much science writing on the web and elsewhere fails to do – it provides background and context for all of the claims that it makes. Granted, developments that have advanced our knowledge of cancer biology aren’t particularly controversial, but it is still necessary to illuminate the scientific process and make clear how these discoveries come to be. This book is just solid in so many ways. The structure is great, and very effectively drives the narrative forward. The personal stories add so much to the overall understanding of cancer and its impact. The science and medical information is clear and easy to understand.

There is just so much that you can learn from this book. I don’t think I’ve come across another resource that was as interesting and entertaining while being as informative about all of the issues involved in cancer than this one. I recommend it to everyone because cancer is something that affects us all, if you don’t have it yourself then you know someone who has had to face that diagnosis. The Emperor of all Maladies really is a biography of cancer, and the crash course that I think we all could stand to go through for a better understanding of this disease.

New Job: The Dana-Farber Cancer Institute

After an incredibly crazy month of traveling, interviewing, and moving I have officially started my new full time job at the Dana-Farber Cancer Institute in Boston. I announced on Twitter a few weeks ago that I accepted a position with DFCI as a science writer for donor relations, but I realized I never really gave my blog readers any background on what I’ll be doing. After all my whining and pontificating about growing up and joining the work force, it wouldn’t be right to not explain what my new job is all about.

DFCI's new Yawkey Center via HelloBoston
DFCI’s new Yawkey Center via HelloBoston

As a science writer for donor relations my role is to research, gather information, and interview PI’s about research projects (mostly pre-clinical and clinical) on specific beats that I’ve been assigned. The beats are all specific subdivisions regarding research at DFCI, it could be a specific group of cancers like women’s cancers,  a particular research group or institute or a particular program or approach to looking for treatments. DFCI is one of the oldest and most accomplished cancer research institutes in the United States with a serious commitment to both research and patient care.

Once I’m up to speed about what has been going on with a particular beat I write up a narrative report about all of the cool things they have accomplished in the last year. That report is given to donors to showcase the work that DFCI researchers are able to accomplish with the funding that the donors give to the institute. I’m just starting to get into my first project, but I’m really excited. I’m going to get to interview amazing researchers, and get to learn more about really interesting approaches to finding treatments for cancer and related diseases. DFCI is using the most cutting edge technology and processes available to come up with new incredible ways to take down cancer cells, and I get to spend my days finding out all about it.
So, that is my new job in a nutshell. It required a move from New Jersey to Boston which has been an incredible, though tiring experience. For those who are interested DFCI has a fascinating (at least I think it is fascinating) history making breakthroughs in the treatment of cancer. DFCI was founded in 1947, as the Children’s Cancer Research Foundation, by Dr. Sidney Farber who was looking for a way to treat childhood leukemia. In the late 40’s leukemia was an automatic death sentence. Farber was the first in the world to achieve temporary remission of acute lymphotrophic leukemia (the most common form) using drugs (and later combinations of drugs) as treatment.
The foundation expanded to include adults in 1969 and was renamed the Sidney Farber Cancer Center in 1979 in honor of its founder. The name was changed again in 1983 to the Dana-Farber Cancer Institute to reflect the long term support of the Charles A. Dana Foundation. I’m going to guess everyone is familiar with the term chemotherapy, yes? Chemotherapy was developed at DFCI. There have been many other breakthroughs achieved at DFCI over the years, I suggest taking a look at the milestones to get a better idea.
Another interesting bit of DFCI is the formation of the Jimmy Fund and the organization’s relationship with the Boston Red Sox. DFCI was really one of the first cancer research organizations to successfully use public fundraising and awareness campaigns. A radio program in 1948 featuring “Jimmy” a childhood leukemia patient being visited by members of the Boston Braves baseball team prompted a huge influx of donations and the construction of the Jimmy Fund building on what is now DFCI’s main campus in Boston’s Longwood Medical Area. In 1953 the Boston Red Sox named the Jimmy Fund their official charity after the Braves left the city, which is a relationship that continues nearly 60 years later.
That is just some really basic information about my new job and DFCI in general. I really suggest taking a look at the DFCI website and the Jimmy Fund website if you are interested in learning more about the institute. I’m proud and honored to be working for such a great organization, and I can’t wait to see what comes next. Also watch this video, and feel the awesome.
Note: By NO means am I an authority on cancer research or treatments of any kind. I am NOT a medical doctor, and am not qualified to answer any medical questions you may have. If you would like to talk to someone at DFCI, you can call the institute at 866-408-3324.