Main Entry: Two Worlds Collide

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…

First Steps:

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.

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21 Responses to Main Entry: Two Worlds Collide

  1. Pam jarrell says:

    Hi Mark,
    Gosh, I hope you read these things…
    What good is the internet if you can’t look up favorite people you’ve been blessed to know over the years? Walpole, my old stomping grounds…had I not moved back to Baltimore 18 years ago, we’d practically be neighbors. Does Ernie Vose still own the big chicken farm up there? It was so fun to hear that “Moose” voice when I started with the Cheshire County Y all those years ago. To think, I thought that it was stupid for them to put my photo in the paper.
    This journey of life has really thrown you some doozies. I am not surprised that you have met them with bravery and poetry.
    I look forward to your next posts and wish you unlimited joy!
    Pam Salkowitz Jarrell

  2. Thank you for some other informative web site.
    Where else could I get that type of info written in such an iideal way?
    I have a mission that I am imply now running on, and
    I’ve been on the look out for such info.

  3. Thank you for sharing. I was diagnosed with a 6.7cm ependymoma this year in January, just a few weeks before my 29th birthday. Reading others’ stories is so encouraging to me, even if things aren’t ideal. Blessings on your continued journey.

  4. Tonia Fleming says:

    Mark- Just read your blog. So sorry to hear about your health challenges. Glad at least that you
    have a positive outlook and such loving family and friends. Sending lots of positive thoughts your
    way as you navigate this journey. Sincerely, Tonia

  5. sonia williams says:

    mark

    i am glad that i have the opportunity to see you again, even if i cannot touch you , or pull you close to express the joy that i feel at reading this…not at your pain, but at your great courage and fearlessness….rememebering when we sang we shall over come in the late 80’s for divestment out of south africa…remembering your quicky smile that filled me with warmth during moments of lonliness at hamilton…you surpassed boundaries imposed by ideas about race, class and gender …boundaries imposed by too much beer and too little time to be human on that cold but idyllic hilltop….nuff respect & love sonia

  6. Nina Ryder Lynn says:

    Mark,

    I am so glad I came across your blog on Facebook. Your words are remarkable, inspiring and tremendously moving. My thoughts are with you and your family. You are a brave man and I look forward to following your blog. Stay strong! Warmly, Nina

  7. Lisa Brande says:

    Mark,
    Somehow I just found my way to your blog and read what has been going on for you…I had no idea! Such wonderful writing, and a great outlet for what you are going through. I wish you continued energy, humor, and strength. Each day IS precious, and its good to be reminded. I signed up for your blog and look forward to reading your posts!
    Best always,
    Lisa Brande

  8. Ken Brautigam says:

    “You have to get it out in the open… Now you’re half-way home.”
    Your writing’s filled with laughter, pain, love. Thanks for sharing.

  9. Bruce says:

    Unfortunately, this sounds too real….I too am an Adult Ependymoma survivor. That’s what you are, you know….a survivor!

  10. Bill Scarlett says:

    Mark, I knew you were a man of many talents, but never realized until now, what a gifted writer you are. That essay was gripping, compelling, poignent, funny, heartfelt and filled with your typical irrepressible sense of hope. I wish you all the best as you head to Texas, I’ll be sending you good thoughts. And someday you ought to write a book! Your writing could be an inspiration to many!

  11. Tom Matlack says:

    Thanks for the inspiration Mark!

    Tom Matlack
    founder, http://www.goodmenproject.com

  12. Mark, you sir are an astonishing human being!
    As much love and support as I can possibly give is on its way up to you. Thank you for letting me in on what you are going through. I am proud to be your friend, and I want to be there when they let you have your next martini. Cheers!

  13. Jenny Stern-Carusone says:

    Holy shamole Mark! I’d like to be complimenting your awesome creative writing (still have your ‘love poem’ on a t-shirt!), but instead I am left awestruck with tears and a quiver in my stomache! Thank you for taking the time to compose such a vivid rendition of this experience couched in so many other life changing moments. It goes without saying that our hearts are with you with blessings for a strong, healthy full recovery. Glad you can ‘view Vermont’ to ease your mind as you repair. All our love – Jenny, Jud and Tegwin

    (PS – Running across campus in the chapel through a pouring rain with you in your yellow slicker and me just trying to ground on my first day of college having just ‘arrived’ from the Providence RI shows is still a fresh and vivid memory….thank you.)

  14. Anita says:

    We send healing energy your way. And a very well written blog.

  15. The Lyle says:

    Thanks for your note. Wonderful perspective and writing. I found myself nodding the entire way through your account.

  16. dede Cummings says:

    Mark, this is good writing! I was at the edge of my seat–you have a book here, natch, and whatever you need–call me, write me, and you got it! Ever since I heard you on the radio years ago, I have always felt like you belong on the front lines of cultural media. Now, however, I see you are mixing medical memoirs even more effectively! This reads like a New Yorker piece, and it is you, your life, and blessedly so you are on the way to a full recovery! I gotta figure out how to RSS your blog! My best wishes, Dede

  17. Wendy Brennan says:

    Hi Mark~
    You are an amazing writer! I wish that the subject matter was a little lighter, but thanks for being so honest. Keep it coming…. writing has got to be great therapy in this complicated time.
    Lots of love, Wendy
    P.S. Sean LOVED seeing you at Harlow’s yesterday….. eat all the sandwiches

  18. KT says:

    Mark, your writing is much, much more than therapy for {only} you. It’s a gift of perspective and presence to all of us on so many levels. We will all continue to be with you on this journey.

  19. Mike says:

    I have no words. The things I take for granted and the minute details/nuisances of everyday life that often rattle my cage has thus cast a shadowy shame over myself. What terrific writing – as usual, your positivity and humor shine through even in the worst of times. I wish you well and a speedy recovery Mark.

  20. Jesus, Mark! I’ve been out of the loop, clearly, but I’ll try to stay looped up in the future. I wish you well, my friend, and let me pass along The Code of the Hudsons, which I and my children recited every morning as they popped off to grammar school. Me: Take no prisoners, eat the wounded, death to our enemies annnnnnnnd… Them: Have a nice day!

  21. SpecKay says:

    Moose, words are inadequate. I feel blessed to read your story, this one version of it, I’m sure it changes daily, hourly. I am glad your humor is there, that your wide, wide community is there. Karen

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