Welcome to the Journey. Thank you for reading. This is good therapy for me and I hope a good read for you…and it is also written for those who are afflicted with this cancer, those who have family and friends with brain cancer (or any cancer or related illness for that matter) and those incredible doctors, researchers, scientists and others working towards finding answers…
There are moments in life that are completely out of our control. Some are minor disasters and others are of epic proportions. We experience moments that are truly beyond our grasp and often defy our ability to comprehend. There is a particularly unstable glass shelf in our medicine cabinet, loaded with various medicine-cabinet items, medicine bottles, shaving cream, cologne, razors, etc. which from time to time, comes loose, sending the objects sliding and crashing to the sink below. It’s an awful mess. It’s loud and it’s bothersome. And it remains one of those little things, those small projects, that nag and bother that we just don’t seem to be able to get to. Of the more catastrophic events which come to mind, there are two which gnaw at my heart.
On September 11, 2001 I was working as the Development Director at The Greenwood School in Putney, Vermont, a junior boarding school for boys with learning differences. When news of the first plane hitting the North Tower arrived, the faculty and staff went into lockdown mode, shutting off the media from the young children, many of whom had family in the NYC area until more news came in. I went to a friend’s apartment on campus to watch the events unfold on television. Like so many, I had friends who worked in NYC including classmates from college who worked near and in one instance as we later found out, at the WTC.
With the newscaster standing in the foreground, I watched the second plane fly into the South Tower. Like so many, I felt sick to my core. What appeared to at first be a horrific accident was now a new nightmare of unparalled proportions. The world had changed in an instant and would never, ever, be the same. One hour and thirteen minutes later, yet another unspeakable, surreal moment occurred. As the South Tower collapsed into itself, I rose from where I was sitting, holding up my hands, screaming “NO! STOP!”
This instinctive reflex, trying to somehow magically stop the building from falling with my hands, haunts me to this day. All of those people pulverized into dust. The jumpers. The mass of destruction.
Another moment seared into memory was watching the effects of the tsunami in Indonesia and one particular piece of news footage which showed an elderly couple, stranded on a structure of some sort, literally holding on to each other for dear life. With rescuers attempting to offer a helping hand, the couple, terrified with the look of despair in their eyes, was out of reach and helpless. Eventually, as the waters raged, whatever they were holding on to gave way and they both tumbled into the murky abyss of the raging waters never to be seen again.
My name is Mark Richard Green. I live in the small, idyllic, New England Village of Walpole, New Hampshire, located along the Connecticut River. Living here, to paraphrase artist Maxfield Parrish, I can “get a better view of Vermont.” I will turn 44 this Thursday, and have two beautiful remarkable daughters. I am a major gifts officer for The Putney School, in Putney, Vermont and live in a wonderful, supportive, loving and diverse community full of educators, artists, writers, entrepreneurs, builders, farmers and other professionals. My family: sister, father, mother, niece and nephew live in Philadelphia. I have relatives in Florida, Kentucky, Chicago, New Jersey, Georgia and California. We are a small but loving clan.
What has unfolded these past two weeks can only be described in metaphor. Imagine sitting peacefully in your kitchen eating breakfast when, without warning, a locomotive train plows through your home. You are still sitting there, bowl of cereal before you, and you sit bewildered as the debris from the destruction swirls around you. It’s been like that.
When I was a child, there was a short piece on Sesame Street in which a child spills his milk. When his mother asks him what happened, he explains the mishap through a series of little lies. When he shares how the milk spilled, his imagination comes alive. At one point he tells his mother “a heard of rhinos came through the kitchen and they knocked it over!” At this point the camera cuts to an enormous herd of stampeding rhinoceroses and we see the kitchen shake and his milk spills. It’s been like that.
A giant boulder. A meteorite. In real terms, a golf-ball size tumor. A golf ball diameter is 4.26cm. My golf ball was 4.3cm. And I’m not even good at golf. A rare form of brain cancer normally found in pediatric cases: Stage III (WHO grade) anaplastic ependymoma. Of all cancers, brain cancer makes up for 1%. Of these, 2-3% are in the form of ependymomas. Of these ependymomas, 95% are found in children, 30% under the age of three.
90% of ependymomas in children occur in the brain. In adults 60% occur in the spine. Mine is in the brain. Just writing the word brain is strange. It sounds strange. Like the words putrid, vomit, goulash, or moist.
As math was never a strong suit, forgive me for not having the figures, but let’s just say it’s rare. But cancer is cancer and in the end the numbers don’t change the facts or the course of the disease. Except to say that because of the rarity, there is, understandably, not as much data nor resources to help with research and cures. But there is hope and there are doctors and scientists in the field who are working to help find a way out. The CERN Foundation is one such organization (the Collaborative Ependymoma Resource Network). I am heading to Houston soon to see leading doctors in this field at MD Andersen.
My moment of truth came on June 28th. I was home alone. The kids and Barb, my partner were in St. John and I was getting ready to walk or bike down to Burdick’s, an ambient, French- themed restaurant run by world-class chocolatier Larry Burdick. I figured I would use this time alone to sit at the bar, read the New York Times and have a nice relaxing meal.
What happened next occurred over span of about twenty minutes. I was outside getting something from car, perhaps, (I don’t remember) and slowly fell to the ground. Crumpled is more like it. Like a marionette whose strings had been let out. I felt a bizarre wave wash over me, like someone covering me with a lead blanket and I felt enormously weak. I felt as if I had been shot by a tranquilizer dart. (not that I would know)
Uninjured, I realized I had lost function of my body. I literally crawled into the house, pulling my legs over the threshold. As I rose, my hands were uncooperative. I tried to button my shirt. My hands ignored my command. I tried to put on my shoes only to find them unwilling to go on my feet. I actually laughed. I wasn’t in pain. I was just more uncoordinated than usual.
As I sat down, I imagined a trippy film, like something Warhol would have shown at a Happening with melting celluloid images and psychedelic swirls. Or Luis Buñuel. I realize now that when films show someone in the throes of an acid trip or under the influence of a hallucinogen, they have it down pretty well. The editors must have some experience to be able to translate this feeling so well on tape. I am thinking of scenes from Clockwork Orange, Fear and Loathing in Las Vegas, Trainspotting, the Big Lebowski, The Wall or The Doors movie.
I tried to dial my phone but my fingers were spastic. I finally managed to speed-dial Laura, my former wife with whom I remain close. She talked me down. Told me to relax. Suggested I call an ambulance. In my stubborn and ignorant state, I had resolve to push through this. Frightening as it was, I still wanted to go have dinner. Was it a mini-stroke? A TIA? Lyme disease? My blood pressure had been running consistently pre-hypertensive, not alarming but borderline concern. As the minutes wore on, I regained function. I was weary but eager to get going. Rather than walk or ride my Holland-made Union “town bike” of which I am so proud, I hopped in the car for the 1/2 mile drive. When I arrived, I shared with the host that I had a dizzy spell and not be alarmed if I seemed more woozily than normal. I ordered a margarita and dinner and sat down to work my way through the newspaper. All was well again.
I followed the family to St. John two days later and spent the week there without incident, as far as I can recall. Looking back, perhaps on some level I felt “off” but me, used to ignoring pain and discomfort -we all have some sort of discomfort somewhere as our bodies age. I carried on. (I have been known to bruise and bleed and not realize until someone says “hey Mark what’s that blood on your arm?”
When I returned from vacation I started my new position at The Putney School as Major Gifts Officer. To say that this new role represented a very fulfilling career circle for me would be an understatement. After a wide and sometimes wild journey with a variety of institutions, all of which were rewarding and fulfilling in their own way, I felt I had taken all I had learned and had come “home.” Being back at Putney, where I worked in the early 90’s, felt good to my very core. The School, stronger and healthier than ever, was a place, due in part to my Quaker schooling, to which I felt a deep connection. It’s progressive roots were deep and strong. I was eager to get going and rise to to the challenge.
As I started my new role, my body and mind continued to feel out-of-order. My normal high-energy self felt sapped. My balance was off. Even my keyboarding, particularly on my left hand felt stiff. Finding the proper keys on the left side proved difficult. At one point I went to sit down and fell off my chair, having missed my target. Carla came in inquiring about the noise. “I’m just a klutz sometimes” I shared. We had a good laugh.
But looking back things were deteriorating. I couldn’t focus. (many who know me will argue that this was nothing new) After speaking with friends and visiting my primary physician we all started assuming these were symptoms of Lyme disease and I had my blood sent out for testing. I shared with my colleagues that I was sorry if I seemed “off” (again how would anyone know the difference?) and that I was convinced it was Lyme. I started on a course of antibiotics. I could even sense the frustration of my boss when I would ask a question and she would smile affectionately but with some understandable perplexion “Well, Mark, as I thought I had previously shared….” She was very gracious and kind and I was sad that I was acting so flaky. I was not making a great first impression. Even my words, which normally flow with ease, would seize up, like sand being poured into a Caterpillar engine crankcase a la Edward Abbey’s Monkey Wrench Gang’s eco-warrior tactics. Another week passed and I had another vertiginous incident at the opticians in Lebanon, New Hampshire. The optician suddenly started to bend and sway like a fun house mirror and I felt dizzy. “Vertigo! Must be vertigo” they exclaimed with concern. This passed and I was on my way.
The next week I attended the Green River Festival with daughters Hannah and Libby and the Kitfields from Northfield Mount Hermon. I was eager to enjoy the music and share a drink with my new found friends. The Carolina Chocolate Drops and Toots and the Maytals were among the acts and normally I would be whipping up a storm of dance and play but spent a good part of the time with what I gathered was a headache from heat exhaustion in the first aid tent lying on a cot with a nurse spraying me with misty water from a spray bottle.
Sunday evening was when the landslide occurred. As the evening wore on a dull headache I had most of the day wore into an epic migraine. Barb and I tried to watch an episode of Breaking Bad but I spent it with my hand over my eyes. Then I started to vomit. Things were going downhill quickly. I had spent the past two days painting the deck (Glidden gun-metal gray with white trim) in the hot sun. We figured I was merely dehydrated. The previous spells and headaches we thought were signs of Lyme disease and tests were underway for detection. Barb and I drove to the ER at Cheshire Medical Center in Keene, New Hampshire. What happened next felt like being pulled into a vortex, an energy field of the most powerful type.
I was given a CT scan and within 20 minutes the doctor on duty delivered news. I had a golf ball size tumor and it was a serious matter. Already IV’d with pain meds I recall a series of events which oscillated between stop-motion photography and riding on some awful carnival ride with sickly colored lights and the din of machines and people. It was a circus of nightmares. The bad dream commingled with reality to create a horrific, numbing, bewildering episode and this is only chapter one. The feeling of shock and bewilderment Barb and I felt at that very moment will never leave us. Was he kidding? In between feeling shocked and the tears I think we even smiled or laughed in a sad, sickly manner. Surely he was just kidding…
Ironically, the tumor is but a mere flesh wound. I am absolutely blown away by the fact that at 6:00 am Tuesday, August 2nd my skull (that word alone makes me tingle) was opened up, a tumor removed, titanium screws and plates inserted, sewn back up and Friday night I was holding court at Burdick’s albeit quietly and sans martini (6 weeks or more before that can happen again…seizure meds and steroids don’t mix well with alcohol). When I thought of brain surgery prior all I could think of was references to the ancient and ill-informed art of trepanning, “perhaps the oldest surgical procedure for which there is forensic evidence” involving drilling a burrhole in the skull to treat health problems.
- Consider how far we have come from the days of the civil war, where as many, if not more soldiers died of their wounds from infection than from immediate death on the battlefield. Bleeding, purging and unproven drugs led famous poet and physician Oliver Wendell Holmes to share “I firmly believe that if the whole materia medica as now used could be sunk to the bottom of the sea, it would be all the better for mankind and all the worse for the fishes.”
The most profound part would be to share that for the foreword of this story, I am blessed by and grateful for the immense love, support, good wishes and prayers and friendship of my family, friends near and far, colleagues, an excellent medical establishment and my communities: Saxtons River, Walpole, Twin Lakes, Abington Friends, Hamilton College, BAJC, Sojourns, The Grammar School, Putney School, Dartmouth College, Dartmouth-Hitchcock, Friends of Norris Cotton Cancer Center, CERN Foundation and countless others. If love makes a family I am indeed a rich and lucky man and wish I could share it all with those in need. If love helps healing I’ve already traveled far.
That this is a condition normally affecting children, as many have said, explains a lot. No wonder I have a disturbing affinity for Buddy the Elf, Willy Wonka, Caps for Sale and Miss Rumphius, The Muppets, Stuart from MadTV, madcap pranks and childlike behavior.
As I prepare for battle (more on the language of war, valor, courage, struggle, winning, losing and cancer later) I will be arming up not just to protect myself and carry on, but to raise awareness of this cancer in the hope that the lives of children affected shall not suffer.
More to follow…the story continues and so does the music. The music never stopped…nor will it.