The C2S blog draws on the arts, the social and biological sciences to explore the many meanings of health and "dis-ease." Designed to be a locus where patients, their families and professionals can meet on a level playing field, it is the natural off-shoot of the Cell 2 Soul Online Journal. We encourage the submission of ideas, essays, poems, stories, humor, and timely reviews relating to the humanities and health care.
“There’s a growing concern that many of the terms we use [when labeling a tumor] don’t match our understanding of the biology of cancer.” Calling lesions cancer when they are not leads to unnecessary and harmful treatment, he said.
An April 15th NY Times article by Gina Kolata explains this paradigm shift well.
This is an important step; but there are many other tumors that likely fall into the same category. As practitioners and as patients when we receive a diagnosis of cancer, it behooves us to question the necessity of aggressive treatment for indolent tumors. Breast, prostate and a number of skin cancers quickly come to mind, but there will be many others. The study reported in JAMA Oncology hints that we have a ways to go and that we are in the infancy of this endeavor.
Ellen Rand writes us: "What’s the reality of caring for loved ones in decline? We’re not likely to see the rawness, the intimacy, the messiness, the profundity of it in the movies or on TV – except for a few rare pathfinders. David B. Oliver was one of them.
David and his wife, Debra Parker Oliver, possessed a deep knowledge gained over their professional lives researching and teaching about aging and end-of-life issues. That he responded to his own deadly illness in a meaningful way is tied both to his character and to his life’s work."
Ellen's beautifully written introduction to the Oliver's moving and instructive videos will interest many of you. We are grateful to her for having sent us her essay (which you can access here: Download Reality TV
Ellen Rand has been a journalist for more than 40 years, including five years as a housing columnist for The New York Times. She is a hospice volunteer with Holy Name Medical Center in Bergen County, New Jersey, a member of the Hospice Volunteer Association and the Association of Health Care Journalists. Her essays have appeared in several medical humanities publications, including Pulse—Voices from the Heart of Medicine; KevinMD; and Life Matters Media. She blogs athttp://lastcomforts.com. Ellen is the author of the recently published: Last Comforts: Notes from the Forefront of Late Life Care which has been called "a must read for caregivers, individuals with serious illnesses, their loved ones who care about their care and elected officials. A must read for caregivers, individuals with serious illnesses, their loved ones who care about their care and elected officials. "
In his 37 years, Paul Kalanithi wore many hats. Near the end of his neurosurgical training at Stanford, he was diagnosed with widely metastatic lung cancer. He wrote a memorable Op-Ed piece for the NY Times in January 2014. He continued working when he could. He and his wife, Dr. Lucy Goddard Kalanithi, had baby Cady on July 4, 2014.
A palliative care colleague wrote: “His ‘dual citizenship’ as a doctor and as a seriously ill patient taught him that respectful communication is the bedrock of all medicine. We [came to] understand that the so-called soft skills of medicine are the truly hard skills to teach and to learn.”
Too few of us, these days, have the gift of time. Spending a few moments with Paul Kalanithi will be worthwhile. If you can take the time, start with the video produced at Stanford.
Art is powerful preventive medicine. Looking at a picture is like walking through an endless series of doors, with each succeeding door leading us deeper and deeper into a rich experience.This journey stimulates our minds, our emotions, our souls; it makes us more alive. Ultimately the esthetic experience heals us and makes us whole. -- Robert Pope, Illness and Healing, Images of Cancer, 1991.
Susan Gubar in a February 7, 2014 NY Times essay, Living with Cancer: An Artist's View writes: "Though we accept ambiguity in art, it is harder to accept in science, harder still in medicine."
Robert Pope (1956-1992) was a dedicated Nova Scotia artist who died of Hodgkin’s Disease at the age of 36 after a ten year battle with the illness. (The link to the Rpbert Pope Foundation is not live now.) His work "reminds us that often patients and caregivers cannot fathom what we sign up for. Even when physicians try to communicate the consequences of their prescriptions, patients need to make a leap of faith.
"Mr. Pope’s paintings make one wonder: Is cancer treatment a form of religion, a means of transformation that involves its own rituals, trials, high priests, sacraments, vestments and bodily signs for people in need of a miracle and convinced that we have to be stripped of everything before we can be reborn?"
Even after two weeks, Susan Gubar's article still resonates with me. Read it if you have a chance, and the moving comments as well.
May 20, 2013 – NY Times:
Barbara Brenner, Breast Cancer Iconoclast, Dies at 61. by Denise Grady
Barbara Brenner, who led the group Breast Cancer Action and
shaped it in her own combative image, pillorying the medical establishment,
industrial polluters and even other cancer research advocates, died on May 10
at her home in San Francisco. She was 61.
Andy Tanji, from Honolulu, alerted us to an amazing Ted video. Jack Andraka, a 15 year-old student from a suburb of Baltimore, has devised a 3 cent test to detect pancreatic cancer in a lab at Johns Hopkins. It's in the early stages of production now, but if it comes to market, it will be an amazing advance.
Looking at him, one thinks of the young Steve Jobs and his role in the digital revolution. Jobs, of course, succumbed to pancreatic cancer (but I am uncertain if this test would have detected the rare form of pancreatic cancer Jobs had).
It should be mentioned that Andraka wrote to 200 scientists for help with lab space and mentoring, but only one offered to help him. That was Dr. Anirban Maitra, a 1996 graduate of the All India Institute of Medical Sciences at New Delhi, who is currently Associate Professor of Pathology and Oncology at Johns Hopkins.
When words are the greatest gift I give, what do I offer when there are none? I have no balm for your spine, No salve comforts you.
Your framework implodes behind a wrecking ball whether you stand, sit or lie.
Doctors use numbers, they know there are no words, no poetry to define it, to relieve it. Loneliness is deeper than writers’ block as I reach out to connect. But what you want so many times is to be left alone.
Author Bio: Lynn's background is in Special Education. She has an MS from SUNY College at Buffalo and taught in city schools for over eighteen years. Now that she is retired, she spends most of her time writing and traveling with her husband. This past year her first chapbook, I Speak in Tongues was released by Foothills Publishing. Her work has also appeared in Wild Goose Poetry Review, Buffalo News, Transparent Words, Barbaric Yawp and upcoming in Slipstream. Please Email Lynn with comments.
Nick grew up in Buffalo but spent a good part of his life drag racing around the United States and in Europe. He has won a number of trophies and has worked alternately as a builder, a driver and a top fuel mechanic. When he recovers from his illness his goal is to drive 300 miles per hour at the Bonneville Salt Flats in Utah. This would break his own speed record.
Lynn and Nick met online and have been together for almost five years.
So there I was, sitting on the curb outside the Farmer’s Market pharmacy in Los Angeles, minding my own business, waiting for my anti-nausea drugs to be filled, when out of nowhere a Baptist woman and her two children surrounded me. She asks if they could pray for my eternal soul. There was no mistaking the fact that I was not in good shape, reeling from the side effects of chemo, looking pretty peaked, complete with scarf-covered bald head and paled face to match. Surprisingly I had the wherewithal to respond.
“Well…you can pray for me if you wanna lady, but I have to be honest and let you know that I’m a proud, agnostic, gay Jew. Now…if you still wanna pray for me, then you go right ahead. I figure it can’t hurt.”
The woman moved quickly, instructing her children to take their positions.
“Robert, you take this nice lady’s left hand, and Vanessa, you take her right. Now children… close your eyes, bow your heads down, and listen to my words.” My head was bowed down too…between my knees…trying not to chuck my cookies. I heard the woman say all sorts of incredibly kind religious things. "Lorrrdy this and Our Fatherrrrr that..." She made beautiful wishes and dreams for me, for my future and for my health. I felt like I was a fancy dinner, being said grace over. Finally she concluded with a resounding “AAA-men” and her children followed suit.
“Amen”. That was me… the last ‘Amen’.
So…you might want to know… did it help? The prayers? The good vibes? Who the hell knows. One thing I do know is that they felt better for doing it, and I felt better for letting them. Then I went home and threw up. Pills and all.
About Marla: Her Web Site. A student at a Canadian high school wrote this to her after hearing a presentation. "I feel obliged to thank you for you have given me insight into how to speak with friends and family when they are ill or sad. I'm not sure if it was the brilliant inspirational words or your charming, charismatic aura that made me so enchanted with your story but I hope to see more of you soon." For student's full letter: Download Hello Marla Lukofsky
“You will need a mastectomy,” the barely middle-aged breast surgeon with strawberry blonde hair, Dr. G., is saying. She looks too charming and nice to perform such a violent action. Her hair is pulled back in a ponytail, her cheeks are round and joyful, her toenails are each painted a different color, and she wears strappy sandals that showcase her healthy legs. How incongruous for her to use the dreaded word: Mastectomy. Unfathomable. I am shriveling. Shrinking. She couldn't mean me. I didn't do anything wrong. Read full essay: Download My Mamma Mia
Author Bio: Evelyn Lampart is a licensed clinical social worker, as well as a writer and painter. Her latest endeavor was to join a group reading works of literature in Yiddish, her mother tongue. Email: Evelyn Lampart.
Image: Life's Mastectomy by Artist Sara Molano
A modified version of this post is being published in the International Journal of User Driven Healthcare (IJUDH).