As the shaman on the NYC subway I have mentioned in previous posts continues to whisper in my head: “I’m a lucky man.”
Yes I have brain cancer. Yes it is extremely rare. Yes there is no cure. There is little data. Yes, I have had two craniomoties in one month. “Ah but a mere flesh wound!” I am home again and forcing rest. My head hurts, the medicine is a bear, or rather, makes feel bearish, and I feel like my skull, brain, dura etc. has been manipulated, sliced and cauterised, scoped and scooped one too many times. But it is also quite simply, a miracle. Or even just merely incredible. I have bought much time. I am embracing the unknown. Slowly. With the expert craftsmanship of Dr. Erkmen and his team, the ensuing and superior oncology treatment with six weeks of radiation from Dr. Fadul and Dr. Jarvis and their team, as well personal support from dear friends and family, I have climbed another mountain and am ready for the next. Huff, huff, pant, pant. I think I can, I think I can. I know I can, I know I can.
It is also, the last time I checked, 2011. (I have, for the need of assessing mental function, been asked the date, where I am, what my name is etc. too many times to mention) It is not 1200 BCE, 600 CE., 1860 nor 1950. Or even 2008. The world of medicine continues to advance in incredible ways and many of us have benefited from these advancements.
Walking in any old New England cemetery, as I often do when given the chance, offers a very poignant, sadly poetic portrait of a world not long ago, where life expectancies were significantly shorter, and parents seemed to outlast multiple children. There are so many child graves in these plots, with beautifully carved slate, or cast lambs resting atop stone, (a symbol of innocence) the stories these children and parents suffered leave much to the imagination. Death, even more so than today, was as much as part of life as the reverse. Yet, I feel strong, eager, healthy and full of vim and vigor, among other things, I am told.
My temporary life in the hospital was not even remotely close to that of the above scene from Monty Python’s Meaning of Life, (certainly not at DHMC) although I think we are well aware that the healthcare system is, in this country and around the world, in dire need of radical change. There are many with and too many without adequate, even basic healthcare. As our (Vermont) Governor, and so many others continue to chant, health care is a right not a privilege. (sadly, not everyone really believes this) In fact, Dartmouth College’s outstanding President Kim, co-founder of Partners in Health, recently initiated a landmark effort: The Dartmouth Center for Healthcare Delivery Science in a remarkable, collaborative, cross-disciplinary achievement to help improve upon and advance healthcare delivery much in the same way The Dartmouth Atlas, has become the standard for measuring the efficiency and effectiveness of healthcare across the United States.
In no way did I ever feel like the pregnant woman in the clip, being barreled down the hospital corridor, at least not that I recall. One can indeed say, do and feel very strange things under anesthesia. According to the “download” with the head anesthesiologist, I was highly emotional coming out of the operation, sobbing and yet still cognizant that my emotional outpouring was catalyzed by the medicine; a cork un-popped, letting loose the geyser of emotion I continue to hold within. The Python clip certainly captures the medically induced haze and frenzy of how fast things seem to fly when being wheeled (albeit much more gently) into the operating room with lots of machines which go “bing.” Another clip comes to mind when Mike TeeVee enters the sterile world of Willy Wonka’s “Wonkavision” room. It felt like that. Sort of.
There was a woman with whom I shared a room with the first night during my second round in the Neuro-Special Care ward. She was a sweet, gentle, woman, with buzz-cut hair. I do not know why she was there but in addition to her immediate needs, she was also deaf and appeared to have no immediately family members or friends to care for her.
She had none of her own clothes and desperately needed what I gathered to be a translating device left at her home in Southern Vermont. It appeared she had been there for at least a week, if not significantly more so. The nurses, doctors and social workers were doing everything in their power to help her and she had a personally assigned social worker/translator with her for a few hours but it was also clear there was exasperation in the air. One of the nurses lent her own computer so she could Skype with someone, presumably in California. It appeared that even in these technologically superior times, even the best institutions with the most outstanding resources with the best people can become hamstrung by red-tape, HIPAA rules, protections and limitations. And I am certain I have only a small fraction of the story.
I am, by nature, claustrophobic. To imagine myself in her world, as I did, in the hospital, far from home, trapped by a profound inability to communicate left me very sad and feeling for her deeply.
In the ward, going to the bathroom, where privacy more or less disappears, became a shared experience as the need to measure liquid waste output, and maintain dignity with a simple washing of the face or brushing of the teeth is vital. When I would walk past her bed, I would send her a smile and finally, at one point, came over to her and held her hand. We were communicating with our eyes, our hearts and palms. Nothing need be said. It was all either of us needed at that very moment.
“Community” is one of those catch-all phrases which can be used so frequently, so casually, it often seems to lack meaning. And yet, the need for community is what makes us human. We are by nature, social creatures and whether we reside in a tribal village, a high-rise apartment building, a small New England town or a sparsely populated desert plain, no matter how ascetic we wish our existence to be at times, in the end our desire for human contact trumps all other needs. I think of Tom Hanks befriending “Wilson” the volleyball in Castaway or the old codger “Felix Bush” played by Robert Duvall in Get Low, as he attempts to draw back the community he divorced himself from so many years ago by inviting everyone to his funeral for which he is present. Sad experiments as they were, it is known that chimpanzees will bond with any object given if kept in isolation. In the end, we are never really, truly alone. At least we don’t wish to be.
I studied in the UK in college and, in addition to appreciating warmer beer, Pinter, Beckett, Albee and Stoppard, and the fact that outside of Indian food (at least in the 80’s) English food was indeed as awful as it was purported to be, I also benefited from joining the “Fell and Cave” club of University of East Anglia. This was the mountaineering club and we hiked fells, otherwise known as “an open stretch of country or moor,” and did a lot caving, also known as spelunking, mostly in Wales. The hiking came naturally but the caving was another matter entirely.
I am not sure I can reference a bigger mental obstacle overcome during those times than lowering myself, with helmet, climbing gear and lantern, into a hole in the ground, into which water was flowing, roped together with my caving mates and descending into the deepest depths of the earth. It is nearly impossible to simply change your mind once you go in, as the effort to squeeze, twist, corkscrew and manipulate a body through narrow, wet passages allow no room to simply turn or go around anywhere but forward. It was, at its essence, mind over matter as matter had to be ignored or embraced but not fought lest one panic, become physically stuck and ultimately entombed to die, as sometimes happens.
This community of cavers I thank every time I have to insert myself into an MRI tube for the umpteenth time. It all connects. All of our communal experiences.
“Mark, what are you doing outside? You need to be careful of the light!” Professor Hartov exclaimed as a I waddled along the path outside the hospital after the surgery. Beaming a hearty smile, Alex, somewhat resembling a joyful Tevye from Fiddler on the Roof, (no offense intended, Alex!) whom I knew when I worked in development at Dartmouth’s Thayer School of Engineering, is a professor of note and was directly involved in the clinical trial, called 5-ALA fluorescence, in which I partook. Spoiler alert- a film, not for faint of heart as it is graphic, but fascinating if you are able to watch: a medical outtake of a similar tumor resection (different diagnosis) using 5-ALA fluorescence, presumably in Germany where the initial studies were launched. The black light effects should be set to trance or house music. Again, for some this may be graphic but the purpose is educational. I find it fascinating. Click HERE if you wish.
Another friend, and fellow skier, Professor Brian Pogue, was also part of the study. To know this gave me comfort. I actually knew some of the players in this trial study. I drank the “potion,” a dye which would, in three hours time, help illuminate under black light residual cancerous tissue. Dr. Erkmen shared he was pleased with the results of the disco party that was happening inside my head. (my words, not his) I had some mild nausea and had to be kept in a darkened room for a few days; any venturing out had to be done under cover and with sunglasses. Post-op, I looked like a Beduoin Bluesman. Wandering around DHMC at 3 AM, amped from the steroids, I felt like a lost soldier in a deserted airport terminal. In a strange way, it was comforting.
Me with Artist Barbara Kaufman’s gift to DHMC in the sculpture garden: my new friend. DHMC is blessed by the art of many including friends Eric Aho, Jonathan Clowes, Henry Isaacs and Doug Trump. Art truly does heal all.
Everywhere I turn, examples of the communities in which we exist remind me what gives us our lifeblood, in some cases literally. While visiting Norris Cotton Cancer Center, I was pulled towards the reams of literature. One pamphlet outlined why giving platelets for blood donations was essential to cancer care and research. I beamed and winced simultaneously. I always loved giving blood. Some argue it was for the free sandwiches and snacks, which may very well be, but now here I was, benefiting from the generosity of others via a gift I had always enjoyed giving myself. My wincing came from the fact that I am unsure if I can give blood again. And that I will miss the free sandwiches.
I have spoken before of the community of cancer. When this event came to light, stories of those who had been afflicted or have had family and friends who have been touched came pouring from every seam. There is no question of an immediate survivor bond. A “oh, you as well” connectivity. There are warm hugs, deep eye contact and sometimes tears. It is extremely powerful and often overwhelming. Some are exceptionally private, others share freely. No judgement is passed on any approach. I have friends I have not connected with in years and suddenly, with the facilitation of social media, I find that they are survivors as well and the bonds we had were never lost but in fact strengthened. With thers in and around my life, there is simply the knowing and that is all there needs to be. Endometrial, neck, colon, lung, ovarian, bone marrow, prostate, breast, tongue cancers, radical hysterectomies, leukemia, brain tumors benign and malignant. The list is almost too much to bear. This community combined with that of DHMC, its own little city, gives me great comfort. Living where we do, how we live, with whom we live, fills my heart.
And while toes are stepped on, and mistakes are made from time to time, the very nature of our community helps heal itself. I remember over nearly twenty years ago, during a particularly nasty battle over whether Rockingham should have allowed a prison to be built, ( it did not) a dear friend, multi-generational Vermonter/Father/Farmer/Neighbor extraordinaire, Pete Stickney, shared some candid feedback after something I said or wrote in local paper. “Green, you’re awesome but you are gonna get yourself killed.” (or something to that effect) He wasn’t serious but his warning was clear. Loving thy neighbor is a pretty good idea and living a small community requires a different degree of patience, care and feeding, especially when there are differences. It’s this beauty and this challenge why I love where I live. The community efforts in the aftermath of Vermont’s recent flood damage was a perfect example of the why and the who and the how.
As an aside and mea culpa, I learned a long time ago tailgating (knowingly or not) on Westminster West Road is very unwise as it will be more than likely you will know personally that driver whom you are dogging. I have been scolded enough times by friend and neighbor enough to know this to be true.
I, Mark R. Green, hereby apologize for all previous driving mayhem and plead no intent harmed beyond sheer head-in-the clouds day dreaming combined with loud music and an irrational need-for-speed. I would like to think I am faring better, lately, as it has been a long time- over a year in fact, since I have been pulled over. (friend and former neighbor Detective Ruse, can you please confirm this?)
The closing of this post shares a seminal moment in cinema. The final scene in the 1976 film based on the book written by Ken Kesey and directed by Milos Forman, One Flew Over the Cuckoo’s Nest. This is in no way intended to be a reflection on my exceptional experience at DHMC. There was no Nurse Ratched. I did not feel controlled and believe I had the very best care. While I do identify somewhat with JP McMurphy’s rapscallion demeanor, I received no involuntary electroshock therapy. Rather, Chief’s self-release is a metaphor for my own release. With this love and support of the many communities in which I dwell, we are all lifting the heavy sink of disease and illness, heaving it through the walls of our imprisoned bodies and let loose in the fields to be free and live. And love.