On Presenting Resisterectomy

Chase Joynt, co-author of today’s guest blog with Dr. M. K. Bryson, will present Resisterectomy at our October 18th festival, Art, Anatomy, and the Body: Vesalius 500.

Chase Joynt, left, and Dr. M. K. Bryson, right.

Chase Joynt, left, and Dr. M. K. Bryson, right.

Chase Joynt:

I announced my desire to find a collaborator for my then-still-hypothetical project Resisterectomy at every available opportunity. Lulls in dinner party conversation were filled with the always laughter-stopping question: “Does anyone know someone who has had a mastectomy and a hysterectomy who might be willing to talk about their experiences?” Anecdotes shared about eccentric distant relatives who happened to be both cancer survivors and watercolor painters were followed up with: “Do you think that person might be interested in working on a project with me?” And friends unfamiliar with the artistic process of starting a project from a place of utter-not-knowing (and/or perhaps at best “a hunch”) continued to entertain my quest suspiciously, albeit with sympathy. The most frequent reactions to my casual inquiries were blank stares and occasional bursts of conversational sarcasm directed at the seemingly impossible identifactory requirements of the project’s specificity. One day however, after lobbing the question into a blue-couch-filled Toronto living room, I was met with an animated, sarcasm-free answer: “You need to talk to my friend Mary Bryson.” Within hours of sending Mary the initial “Hello, how are you, might you be interested in chatting about these things?” e-mail, I was met with some necessary and critical resistance.

Dr. M. K. Bryson:

When I first heard from Chase (“I am looking for a woman who has had both a mastectomy and a hysterectomy.”), I was simultaneously deeply skeptical and intensely interested in his project. And even though I really did not, and do not, “feel like a woman” I assumed that because of Chase’s up-front trans* alliances, the complexities of our potential dialogue would find plausible vocabularies if not any shared experiences. I don’t in any case expect shared experiences no matter how self-evident they may appear to be. And besides, I had by then had at least a year’s worth of experiences interviewing participants in the Cancer’s Margins research project—Canada’s first ever nationally funded research project focused on LGBT experiences of breast and gynecologic cancer.

I knew several things by then about bodies, cancer, and the impact of mastectomy and hysterectomy. For one thing, my research interviews confirmed what I learned from my own cancer experiences—that for people with histories that overlap in minor or major ways with trans* health, the simple “fact” of the double-duty these surgeries take up—that mastectomy and hysterectomy are both cancer surgeries and also surgeries related to trans* health—means that these surgeries are already much more culturally complex than is typically within healthcare providers’ understanding and training. I knew that gender is very definitely implicated in how cancer patients experience cancer-related treatments and surgeries generally, and very specifically, that cancer patients’ histories of gender will shape what is meaningful about mastectomy and hysterectomy in ways that reveal the impact of trans* culture in the larger world of gender. I have always been very fond of exploring both/and relationships that organize how people located in precarious communities experience our lives and therefore, how organizations and institutions that create systems of care need to think about caring for marginalized people.

CJ:

It has been two years since our first meeting, and Resisterectomy continues to tour galleries, festivals, and schools internationally. In May 2014, we were invited to present the work as a part of the Sexuality Studies Summer School at the University of Manchester. Unbeknownst to the organizers, the occasion marked the first time since its creation that we were able to talk about the work together in public. As a result of living and working on opposite coasts, we rely on Skype and DropBox for our project-related intimacies, and I often tour and speak alone. Presenting a collaborative work alone is a complicated and precarious endeavor. How can I speak to the specificities of the project without problematically narrating (and therefore truncating) the experiences of someone else? And yet simultaneously, how can I protect that person by speaking to the assumptions so easily made about their experiences on account of their physical absence from these encounters? After our presentation in Manchester, Mary approached me at the reception with a smile, “I didn’t know you talked about the fact that this project was hard!” I smiled, “If there is one thing that every person in every room has thus far agreed upon, it is that talking about this project is hard,” I said.

JOYNT_RESIST_POSTER

Resisterectomy poster.

MKB:

I have been thinking for a while about the academic work that I am doing concerning cancer, gender, and marginalization under the general umbrella of “An Archive of the Talking Dead.” There is something absolutely unique in my experience of talking about cancer research and cancer experiences compared to talking about any other difficult, painful, or harrowing experience. North America is in many ways a culture obsessed with cancer and with mortality—and specifically, with avoiding cancer despite the fact that almost everything we do, like aging or driving a car, is something over which we have almost no control, and which increases our risk of cancer. In Resisterectomy, there is for most people who view the multimedia installation, a story of a trans* person (Chase) and a story of a cancer patient (Mary), both of whom have had a mastectomy and a hysterectomy. But that’s not how I see it at all. I am a trans* person for whom, having a mastectomy did double-duty as breast cancer surgery. However, when Chase and I are in the same space – either because our photographs are hanging on the wall, or our faces broadcast on a screen where the Resisterectomy video feed is playing, then the inevitable assumptions about Who-is-What overwrite what can be made visible in those spaces, and the play with what might be possible is cloaked by conventions. And so there we are.

What is a residual for me, every time I hear about one of Chase’s adventures installing Resisterectomy, or talking about the art with folks, is that he and I have enacted a mode of caring for each other’s responses. Resisterectomy then acts as a kind of Live Case History where a very diverse group of people gets to think, again, about things—about stories—that might benefit from a hell of a lot more energy and creativity. Chase and I took a huge risk in just saying, “Hello. Let’s compare notes. And actually, let’s mix up these stories we think we already know how to tell.” Let’s take great care in the curation of difficult stories—from the Archive of the Talking Dead… Any doctors or nurses in the house? Pay special attention. How could you talk to your patients as if you might be very surprised to learn who they are, and how their life stories are impacted by the changes health inevitably brings? And most of all, learn to enjoy how hard it needs to be. Learn to love what you don’t yet know about me.

Tracking the History of Cancer Drug Development

Lourdes Sosa, today’s guest blogger, is an associate professor in the department of management at the London School of Economics and Political Science.

Have new cancer drugs entered the market targeting ever-smaller portions of the total cancer patient population? If so, is this a symptom of a high-tech market phenomenon known to economists as submarket fragmentation?1 If we accurately answer these questions, we will better understand oncology drug discovery competition and thus will offer better strategic recommendations to enhance drug discovery efficiency.

My co-authors, Prof. Roberto Fernandez (MIT Work and Organization Studies), Prof. Andrew Lo (MIT Finance), and myself, Prof. Lourdes Sosa (LSE Department of Management), set about to answer these questions more than a year ago. As we began our research, our most important first step was to identify the anticancer drugs available in the US market since the birth of chemotherapy in the 1940s. A perfect data source became the Physicians’ Desk Reference (PDR®), an annual directory of approved drugs and full prescribing information that began publication in 1947.

Our next challenge came about immediately: where could we locate an accessible repository that held the entire collection to date? Although key local libraries offered us access to a large portion of the collection in print, we found in the New York Academy of Medicine Library full access to the entire collection. Furthermore, NYAM holds the collection in microfiche format, making it easy to browse from one year to another.

Starting a year ago, we began collecting data from the NYAM Library. We are now happy to report how our study is taking shape (we are also delighted to have an avenue to thank the support of Ms. Danielle Aloia and the team of expert librarians at NYAM).

The title page and an entry in from the 1949 Physician's Desk Reference.

The title page and an entry from the 1949 Physicians’ Desk Reference.

The figure below shows the oncology drugs available in the US market from 1947 until 2001 (data entry is still in progress). The process to identify these drugs started with the Product Category Index of the PDR®, where all cancer-related drugs can be found. We then read the full prescription information included in the product information section of the PDR® to extract the actual indications approved per drug. This latter step allowed us to make a precise decision on whether the drug was a treatment for cancer (as opposed to a treatment for a side effect or complication), and if so, to define for which cancer indications the drug was approved.

Courtesy of Roberto Fernandez, Andrew Lo, and Lourdes Sosa.

Courtesy of Roberto Fernandez, Andrew Lo, and Lourdes Sosa.

As can be seen in the figure, there is a big change in reporting in 1970. Starting that year the Product Category Index of the PDR® reported a category titled antineoplastics that made it straightforward to identify relevant drugs. In contrast, the categorization used in 1947–1969 has categories such as multiple myeloma and breast carcinoma listed separately. More importantly, during those earlier years a vast majority of drugs listed as cancer-related were in fact general-purpose drugs such as steroids, analgesics, and diuretics, which just happened to be novelties in the market.

As mentioned, we used the full prescription information to discern between the cancer-treating drugs that constitute the core of our study and those of either general application (e.g., steroids) or symptom-relief purpose (e.g., anemia treatments). The actual population of cancer-treating drugs for us to use is the black portion of the above figure shown with the legend “treating drugs.”

Our next step (after completing this exercise to year 2013) will be to calculate an index of coverage that proxies for the percentage of all cancer patients that each drug can treat. We will eagerly report on our progress as soon as we have preliminary results to share.

Reference

1. Sutton, J. 1998. Technology and Market Structure: Theory and Structure. MIT Press, Cambridge, MA.

BALL & Other Funny Stories About Cancer

This guest blog is an excerpt from the ending of BALL & Other Funny Stories About Cancer, a 70-minute stage performance by Brian Lobel about illness and the changing body over time originally produced in 2003.

This is one of several posts leading up to our day-long Performing Medicine Festival on April 5, 2014, which will explore the interrelationships of medicine, health, and the performing arts. Brian Lobel will perform this and four other monologues at the event. Register for the festival here.

By Brian Lobel

Brian Lobel

Brian Lobel

But what do I win? Lance Armstrong got the Tour De France, speaking gigs, and a ghost writer named Sally Jenkins (who I’m pretty sure never had testicular cancer), everyone else gets all this wisdom and depth that only derive from cancer, and what do I get? If I wasn’t going to become a better person because of all of those procedures then I sure as hell better win some kind of competition.

 

Competition. I need to be a hero. A role model. A SURVIVOR! I was actually considering sports, which I hadn’t done since my leg surgery in fourth grade. And, P.S., I still hate sports. I still hate to compete. Maybe ballroom dancing. Yeah, ballroom dance is going to become an Olympic sport. I dance. I have nice posture. Ooh, cancer survivor turned Olympic gold medalist —that would definitely make the ticker on CNN. Cancer survivor turned Olympic gold medalist—hah, not even Lance Armstrong has an Olympic gold medal! You can’t just survive cancer anymore. I know that I will never be the best role model or ideal survivor—but I will die trying.

July 1, 2002. Indiana University-Purdue University Indianapolis Hospital Stem Cell Transplant Reunion Picnic. For all of my doctors and nurses a chance to reflect, to reunite with their former patients, and to share in the blessings of life, family, and community. I was three days finished with my stem-cell transplantation process and ready to kick some ass. The day was bright and sunny—as saccharine-sweet and sentimental as the day any cancer-survivor picnic should be. We all gathered in the park—about five miles from the Indianapolis Speedway—and we celebrated. We celebrated living.

The Indiana University-Purdue University Indianapolis Hospital Stem Cell Transplant Reunion Picnic Hula Hoop Contest. For the kids. Eight un-ironic, cute little daughters of stem-cell transplant patients (who I’m sure were once upon a time frozen at International Cryogenics Incorporated) versus Brian Lobel, the world’s most competitive cancer survivor. A race to the finish, a fight to the death. Winner take all: a Coleman folding lawn chair. They were nothing. The world needed to see who the real cancer survivor turned hula hoop champion was…and so, I hula-d.

If it was a title that Lance Armstrong would never hold, I would hold it, and so I focused, intensely, passionately.

My hips began to twirl on their own and my mind began to flash back over the last eight months…boring, endless, depressing, near defeating…The support, the love, the compassion… The hundreds of people who didn’t make mention in this cancer story because they were beautiful, and perfect, and caring, and kind.

Most of the crap I hate about cancer is story after story after story about people supporting and loving each other with cancer. But I think that’s because, to me, it all seems so obvious. But I do feel indebted to those people. Even those people who said obscene things to me like “But thank God you have a good cancer” or “Your spirit will get you through it,” had enough love in their hearts to attempt to connect with me because they cared. Regardless of the messed up way they demonstrated their compassion. They supported me enough so that I could survive cancer and write a story about balls, tubes, and masturbation. I’m sure they’re proud. I thought of my parents, my family, my doctors, and my cohort in struggle. If there were words to describe them or the love I feel towards them, I would share those words with you. Everyone should experience even a little bit of that love in their life…

FOCUS BRIAN. DAMMIT. Don’t give in to that mushy, sentimental bull. You’ve got a match to win. The DJ spoke over the microphone. “OK girls, um, and boy. You’re doing great out there. Now it’s time to take a big step to your right.” DON’T FALL BRIAN. STAY UP, STAY FOCUSED. Four girls lost their hula hoops when they stepped to the right, but mine stayed snugly around my hips…and again my mind began to wander…

Eight months. Gone. Like that. One day, I was studying and living and dancing and hugging and experiencing, and then cancer. The path back to normalcy would be a long and tedious one. I could see years into the future and see how my scars still haunt me, how the smell of saline still reminds me of the hospital, and how people consistently wonder at my healthy appearance and comment, “You look so good, Brian,” thereby never allowing me to forget how sick I really was, and how much everyone around me worried.

“Are you training for the Tour de France?” “How’s the cycling going?” “Hey Brian, where’s your bike?!” Actual jokes, challenges…Well, what was I going to accomplish with my new lease on life? I felt the need to compete, to succeed, and to become this ideal cancer survivor that gets so so so much wisdom. Take my wisdom! Just give me eight months back! I want to be able to walk down the street without thinking Oh, don’t die now, Brian, that would be really uninspiring to everyone, and I want to be able to look at a pimple on my body and not think it’s a melanoma. I did not realize this was a life sentence.

BRIAN. BRIAN. WHAT ARE YOU DOING? FOCUS!!!

Another girl down, and then there were three. I looked into their devil eyes, and saw straight into their struggle-free life. Ooh, how nice. How cute. As I instilled the fear of God into their eyes, their hula hoops soon followed suit and fell with perfect synchronicity. And then there was one. “OK you two…now let’s see you clap those hands.”

WIN. CLAP. CLAP. WIN. CLAP.

Brian Lobel at the hula hoop contest.

Brian Lobel competing in the Indiana University-Purdue University Indianapolis Hospital Stem Cell Transplant Reunion Picnic Hula Hoop Contest.

WIN BRIAN. CLAP. WIN. CLAP. WIN. And then it happened. I let go. Not of my hula hoop, which was still twirling with ease around my body, but of my drive to be something I wasn’t. I wasn’t someone who would let my life be defined by my illness. If cancer didn’t define who I was, then the pressure of Lance Armstrong-like success or masculinity would never even apply. I would never be Lance Armstrong. I would never be an athlete or a competitor, or an inspirational speaker. I would just be me. And that was, surprisingly, OK. It’s weird, as soon as I let go, my life became simpler, less complicated somehow. I was going to live for me, for Brian Lobel as I really was—quirky, awkward, unathletic, unmasculine, sexy-as-hell One-Ball Lobel—and I was happy.

And it fell. My hula hoop fell. What? That wasn’t supposed to happen. I was supposed to be victorious. I was supposed to learn to love myself and to learn that winning doesn’t matter, and then I was supposed to win anyway. That’s how it ends, right? I don’t win and I don’t die? What? I competed, I tried, and I failed. And I guess that’s me.

I sulked back, completely unsettled, to the picnic table. Where would I go from here? Where does anyone go from here? The DJ came over to whisper something in my ear. The little girl who won the hula hoop contest didn’t clap her hands, and was disqualified. I won. (The news sets in slowly.) The eight-year-old girl who won the hula hoop contest forgot to clap her hands. I won. That cheating, lying, eight-year-old who stole the hula hoop championship from me forgot to clap her hands. And so, the 2002 Indiana University-Purdue University Indianapolis Hospital Stem Cell Transplant Reunion Picnic Hula Hoop Championship was won by Brian Lobel, by default. And that’s good enough for me. I don’t know what’s better, beating cancer or beating an eight-year-old girl in a hula hoop contest.