Examined Lives: My Sarcoma, the story of a tumor told with art

By Jacob Scott

This is the story of a Cancer Connection I never hoped to make and also the one that has brought me the most joy.

About a month before my family and I left for the University of Oxford, my dear friend and neighbor Ray came over and asked if I’d look at this side, where an orange-sized mass was growing.

So, you know I’m a cancer doctor, so you can probably guess how this story plays out.  But before I tell you (or let Ray tell you), I want to share a bit about Ray. He’s an artist whose paintings have always struck me, and my scientist and physician friends, in similar ways.  There is just something alive about them.  Something cellular.  Something moving.

This makes sense as Ray studied biology as an undergrad, but it is also says something about the artist: that there is always something moving in his mind. At the heart of this artist is a scientist.

I’ll let him share his manifesto about his treatment, and the subsequent healing that he has found through this new project, “My Sarcoma.”

My name is Ray Paul. I am a 50-year-old artist, musician, frustrated biologist and myxofibrosarcoma patient. As of my latest scans in February 2013, I am free of detectable cancer. My next round of scans are scheduled for June 2013.

My journey begins in the spring of 2011, when I noticed a rapidly enlarging lump protruding from my left flank. Unfortunately, I fell into the category of the uninsured who wait and hope for their medical issues to resolve magically. Finally, as the mass grew to the size of an Idaho baking potato, I felt compelled to go into the local Emergency Walk-In Clinic. I was told it was likely a lipoma and I needed to find someone to remove it. After weeks of worry and several inquiries, I approached a surgeon friend who agreed, with some trepidation, to perform a tabletop resection, using local anesthesia. It soon became clear that the mass was more than a lipoma.

I was sewn up and a sample was sent to his pathologist who forwarded it to the pathology team at Moffitt Cancer Center. Soon thereafter, I received “The Call.” Shock and confusion rushed in, but curiously, were followed by a sense of calm resolve and numb determination.

I was admitted as a patient to Moffitt Cancer Center in August of 2011. I began neoadjuvant radiation therapy in September 2011, followed by a radical resection in 2012 of the 12 x 12 cm myxofibrosarcoma. In July 2012 I was diagnosed with a lung mass, and underwent a lung subsegmentectomy to remove a metastatic myxofibrosarcoma.  In November 2012 I began adjuvant radiation therapy.

During this life-consuming ordeal I have placed my complete faith and trust in my team at Moffitt, and in my physical and spiritual ability to heal. Never have I dreaded going into Moffitt. The strength and determination of my fellow patients has been humbling and has greatly increased my sense of compassion. I have been inspired to create a painting for the Radiation Department, which hangs in the waiting room.

Porpoise Song

Porpoise Song

and have donated a piece to the Integrated Mathematical Oncology Department.

Sweet Jane

Sweet Jane

I am currently embarking on a collaborative endeavor entitled “My Sarcoma” project.  I plan on combining painting, photographic images of my tumor cells, printmaking, video and music to create an exhibit that illuminates my experiences as an artist and cancer patient. I envision my art to be a prescient, visual manifestation of the battle raging within, and a powerful testament to the beauty of Hope.

As a teaser, here is a prototypical Sarcoma piece from Ray.  You can see his signature style of abstract forms detailed into cellular figures, and beneath, an H&E pathology image of his own tumor.

Ray's Sarcoma

Ray’s Sarcoma

Jacob Scott is a TEDMED 2012 speaker who blogs at cancerconnector.blogspot.com.  You can follow him @CancerConnector. You can follow Ray on Twitter at @raypaul4.

Call for ideas: What should a 21st-century doctor look like?

In 1900, the leading causes of death in the U.S. were flu, tuberculosis and gastrointestinal infections. Today, they are heart disease, cancer, and chronic respiratory diseases, with stroke and diabetes in the top ten – largely preventable conditions.*

The problem is, our healthcare system, devoted as it is to acute, curative care, still thinks it’s 1900, with disastrous results. As Ali Ansary, Sandeep “Sunny” Kishore and Jacob Scott, all TEDMED 2012 speakers, wrote in The Huffington Post,

“With increasingly tragic consequences, the reactionary medical paradigm has not provided the preventive care or chronic illness management that our culture needs. Healthcare spending currently consumes 17 percent of our GDP and without a radical shift in thinking, this number may grow even higher.”

Change begins with conversation. To that end, the three have launched a movement called Tomorrow’s Doctor, in which they call for ideas on how to reimagine medicine of the future, starting with med ed.  We must re-align priorities, they say, and take advantage of gains already made in technology and public health.

Above all:

“We need to stop the “imaginectomies” and help, collectively, step by step, to make creativity, imagination and compassion the 21st century standards of medical education.”

Read the full article here and visit www.tomorrowsdoctor.org to contribute ideas.

Sources:  Centers for Disease Control and Prevention; New England Journal of Medicine

Announcing nine more 2012 speakers

Our latest additions to the 2012 speaker lineup will offer a truly panoramic view of health and medicine today and far, far into the future. Through these amazing folks, we’ll have a peek at the wonders of human biology; understand the intricacies of surgery, robotics and neuroprosthetics; hear about novel, visionary tactics aimed at conquering public health challenges like aging, cancer, and tobacco use; and assess the very way we go about knowledge-sharing in the U.S.