back down south

“All I wanna know
Is how far you wanna go
Fighting for survival”

- Back Down South, Kings of Leon

Before the 5K Race for Hope: The Wall of Hope

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No losers here. It was the brain tumor olympics and every participant, every volunteer and every donor was a gold medalist. The 15th annual Race For Hope , presented by Cassidy Turley, was held in Washington DC this past Sunday with over 11,000 participants and over $2.3M raised to help support the fight/war/resistance movement against brain tumors, the second leading cause of cancer death among children and young adults under 20, a disease in which only one out of three survive beyond five years and one for which there is no known prevention as there is no known cause. Sponsored by two very important organizations, ABC2, Accelerate Brain Cancer Cure, and NBTS, the National Brain Tumor Society, this outpouring is one of the largest (but by no means the only) event of its kind in the US. (ABC2 alone also sponsors many other events including a race in Florida and a Marine Corps Marathon)

I must admit to having had a peculiar feeling all weekend- a mix of love, fear, hope and anxiety as I found myself awkwardly cast in a surreal performance. This was my new tribe. Unwilling members all, we were all there for one primary reason: to help fund and raise awareness for the need to find cures to this incurable disease. I walked among the thousands affected and afflicted. Parents wearing customized t-shirts celebrating their dearly beloved children, some of whom have left this earth way too soon and others, many participating in the 5K walk/run who continue to smile despite their disease. Friends, families, colleagues, all marching, walking, running, hoping towards the Capitol.

The notion of “losing” a battle to cancer (or any disease) frustrates. The word “lose” when combined with cancer implies that cancer won and left the defeated beaten to death. No. There is no losing…even when cancer has infiltrated and spread beyond repair, it is the spirit, I believe, which carries on…winning. But yes, when we succumb to the disease, we lose our place as a living being on this earth. Nonetheless this was an assembled army of brain tumor/brain cancer survivors and their families. Given that of all cancers, brain cancer represents 1-2% of the total, this was a uniquely qualified group.

I met other soldiers leading the charge, brain tumor survivors akin to leading generals on the battlefield, fighting for every living soul and in memory of those who are now gone. The remarkable BethAnn Telford of Team BT, who has consistently raised leading sums of money for the cause. The effervescent Heidi Gottlieb of Brain Matters. Liz Salmi of The Liz Army, my favorite multi-media BT comrade. The inspirational Anne Feeley of Brains on Bikes who came from England with her loving husband and daughters who live stateside. The kind Greg Cantwell of “Winning The Fight of Your Life,” the dynamic Stephen Conley who has consistently played a major role as has the Weinberg family. The radiant Stacey Case, whom with her late husband Dan, brother-in-law Steve and sister-in-law Jean started ABC2 through the Case Foundation when Dan was diagnosed with, and later succumbed to deadly brain cancer. My brave and loving parents were also there to support and share in the experience. My dear sister ran her first 5k for the cause. There were countless others I met who have laid their cards on the table for all to see in the hope that their naked truth will help others understand and support the cause.

Over 500 teams included those supporting brain cancer/tumor survivors and those who have already suffered the loss of a loved one and sought to honor their lives by participating. “Kisses for Kayla.” “Dr. Bears Brain Tumor Busters.” “Keep Calm and Cure Brain Cancer” were but a few.

The evolution and explosion of walks/rides/rows/fishing/golfing/swimming for a cure is well-known. The mothership of all cancer fundraising entities, Susan G. Komen, has truly done wonders for raising both critical funds and awareness for breast cancer, as well as creating a very sturdy template for related efforts to fight a multitude of diseases.

It is unfortunate that their good name has been tainted by the recent political disaster over the very misguided decision to not support Planned Parenthood as well as the seemingly unscrupulous “pink washing,” endorsing pink-hued items which themselves are of questionable origin, even sometimes from substances which cause cancer. The impact continues to be felt but over time I hope the Komen boat uprights itself.

Nonetheless, the good has certainly outweighed the bad as countless lives have been saved and over $2B raised since 1982, for breast cancer research, treatment and programs.

As someone who first because involved in fundraising for cancer through my participation in the century rides for the Prouty to benefit the Norris Cotton Cancer Center at Dartmouth Hitchcock, inspired by a friend who had lost his father to cancer, it shook me to my core to suddenly be walking in the “survivor” crowd for the opening ceremony of the Hope for Cure. I was humbled as I walked among the children in wheelchairs, the adults, many in a much worse state than I, mustered all they could to walk with the crowd. Some were blind from their surgeries, others walked with extreme difficulty.

A young couple in front of me (pictured in the slide show) walked with a tight embrace, the lanky boy walking forwards, his girlfriend backwards, her face buried into his chest, she wearing the yellow survivor shirt. They were bawling “I love you! I love you!” as they held each other tight. Tears streamed down my cheeks as the crowd went wild, cheering all of us. “Wait” I thought to myself, “you must have the wrong guy. I must be in the wrong place. What am I doing here? This is all wrong.”

But no. I was right where I needed to be and doing what I needed to be doing. And it was all right. It was all right.

-MRG

“Life is a shipwreck, but we must not forget to sing in the lifeboats.” ~Voltaire

papa

A million ancient bees
Began to sting our knees
While we were on our knees
Praying that disease
Would leave the ones we love
And never come again

- Regina Spektor, “On the Radio”

I lay my head on my father’s side, his threadbare, white t-shirt just as it was over forty years ago. He with that warm, rich, Dad smell. Suddenly, I let loose with a flood of tears, sobbing, previously dammed by the concrete of pride, a desire to protect him from the pain, already inflicted, of knowing the boy he had raised now had brain cancer, and the unspoken agony of physical distance. I had held back for too long.

At a time when we are most vulnerable, we seek the love and comfort of those closest to us. No one party has a monopoly on who this will be. Each relationship has its own particulars. A partner, a spouse, a friend, a relative a colleague. But because two of the primary triggers for heartache of the deepest, most primal kind is when I think of my daughters and when I think of my parents, it is rare that any of us can “go there.” Barb has more than a few times held my crumpled body as I let my guard down. I, a babbling, incoherent mess of fear, exhaustion, and gripping despair. Thankfully, the clouds fade away, the skies clear again, the sun appears and I carry on as I must. I am not one to wallow but I know having a good cry is simply a healthy thing to do, it’s a purifier of sorts, a tonic, a purgative, flushing the toxins of stress out of every pore. But it leaves me completely wiped out.

When I think about this illness, I think about my daughters: my beautiful, smart, sweet, strong Hannah and Elizabeth and my parents, those who brought me into this strange universe, to whose lives I owe mine and are a part of me. In me. Of me. The strong and the weak, the good and the bad. They are more than blood. They are connected souls though the genetic matter which bonds and binds us.

You don’t have a soul. You are a soul. You have a body. ~C.S. Lewis

I often wonder, does Obama, with his brilliant, calm, grace under pressure manner, ever fall apart? Of course he does. More to the point, has he recently been so doubled over with fear, drowning in his own tears of paralytic agony that his knees crumble as he cries out for the touch of Michelle’s soft, warm hand caressing the top of his head? Can anyone really be so strong knowing that they hold so much power and that the decisions they make every day have an impact on so many?

We push it back, the fear and terror. The tears. We simply must…carry…on. My mother has apologetically shared that she is unable to go “there” and that she has not yet had the courage nor strength to go near my writing. When I speak with her or spend time with her, it’s all she can do to muster a mention of “it” as it is simply impossible for her. At first I did not understand. Why would Mom, a writer herself, not want to see my work? But it soon became clear. How could she? Why would she want to? She already knows and yet none of us can know how deep the depths of darkness are, lest we go there and find no way out. While we dance around the perimeter, we are careful not to fall into the emotional sinkhole only to have the dirt and debris falling in with us, burying us alive. We just can’t go there. There is too much to celebrate, too much good music to hear, foods to eat, places to see…and then there is life itself.

The tears, which broke with surprising swiftness and were completely unexpected, fell into his shirt as he held my head. My “keppelah” as he used to call it. Flashbacks of him standing in my doorway in the morning, beaming, shouting “Up and Atom, Atom Ant!” Of helping me ride my two-wheeled bike for the first time. The games of catch. The fishing. The Phillies, Sixers and Flyers games. The league softball games he would play at Haverford, mom dutifully packing a picnic lunch as my sister and I lay on the blanket. But most of all it was his warmth. His love of my sister and me. Like his own father, a clothing merchant and teacher, my father seems to derive much of his joy from a love of children.

What does it mean to be a good dad? No amount of riches, no level of poverty can trump love. Love must be unconditional. Period. One year when Dad drove the five hours from Philadelphia to Upstate New York to pick me up from Hamilton College, U-Haul in tow, a close male friend shared with me a story I have never forgotten. He was looking out the window of his dorm room when my father pulled up. He watched as he got out of the car and I ran to greet him with a warm embrace. He said tears filled his eyes because, while he knew his dad loved him, he had never experienced such a loving, physical display of love with his own father. When he went home, he told his dad they were going out for a beer that very night. At the bar, he did did something he had never done: he told his father he loved him. His father, stoic, of a generation and culture not prone to showing emotion of any kind, returned his expression of affection with an “I love you too.” The earth moved that day. A new chapter was born. The dam had burst. The ice had been shattered.

While there is no monopoly on suffering, there can be no loss more devastating than that of a child. Disease, war, violence, and accidents claim untold young lives every minute of every day. I was going to add natural causes but how can that be so? There is nothing natural about a child dying. And yet they do and always will. They say no one should outlive their children. But sometimes people do.

This is all very hard to write about. So I will end with a variation on “if you love somebody, set them free.” This is for all men: sons, brothers, uncles, cousins, fathers, grandfathers, friends, colleagues, and neighbors, who, by way of history, culture, religion, homophobia, fear, insecurity, politics or whatever virus it is that has infected your heart and has rendered you emotionally challenged, unable to express feelings of affection:

“If you love somebody…tell them!”

Thanks Poppa. For believing in me. For going the distance. And most of all, for telling me you love me. I love you.

Just Like Dad

Cat Stevens: “Father and Son”

bicycle

Ode to Bicycles

I was walking
down
a sizzling road:
the sun popped like
a field of blazing maize,
the
earth
was hot,
an infinite circle
with an empty
blue sky overhead.

A few bicycles
passed
me by,
the only
insects
in
that dry
moment of summer,
silent,
swift,
translucent;
they
barely stirred
the air.

Workers and girls
were riding to their
factories,
giving
their eyes
to summer,
their heads to the sky,
sitting on the
hard
beetle backs
of the whirling
bicycles
that whirred
as they rode by
bridges, rosebushes, brambles
and midday.

I thought about evening when
the boys
wash up,
sing, eat, raise
a cup
of wine
in honor
of love
and life,
and waiting
at the door,
the bicycle,
stilled,
because
only moving
does it have a soul,
and fallen there
it isn’t
a translucent insect
humming
through summer
but
a cold
skeleton
that will return to
life
only
when it’s needed,
when it’s light,
that is,
with
the
resurrection
of each day.

-Pablo Neruda

Photo by Sugarlilly

I rode my bike last week for the first time since my ill-fated century ride last summer. Flying down a Vermont hillside, tears of joy washed over my cheeks as the wind cooled my face. I was at peace.

Last summer was my third 100-mile Prouty. The Prouty, the première event of its kind in northern New England, involves thousands of participants, hundreds of volunteers and has raised over $14 million dollars to support the Norris Cotton Cancer Center at Dartmouth-Hitchcock, one of only 40 comprehensive cancer centers in the country. In addition to riding your choice of 25, 35, 50, or 100 miles and even a two-day 200 mile option (The Ultimate- bless you Charlie Boswell!) one can also walk or row for the cause. The Prouty was not my first large ride. Two summers ago I had completed the 112-mile Harpoon/Vermont Foodbank ride and a few length-of-of the state centuries with the now legendary Joe Cook, a good-natured attorney/bike enthusiast-addict from Brattleboro who has quite a following. In a strange twist of fate, I was so enamored with the Prouty I joined the Board of the FNCCC, albeit for a brief term, as my work made it difficult to attend the meetings. Years later I am now indebted to all things Dartmouth-Hitchcock and the Norris Cotton Cancer Center. A heartfelt thank you, Jean, Susan, Rebecca, Catherine and the entire staff.

Learning how to ride in a pack, also known in bicycle jargon as a peloton, was a new experience. Prior to jumping into these long rides I was usually a solo rider, save for an occasional trek with a friend or two and a few regional group rides. The politics of the peloton are as important to understand as the physics: you must stay in formation, front wheel within inches of the person in front of you. You must not be “squirrely” lest you invite a disaster of especially painful, expensive proportions. You have a duty to warn those behind you of oncoming hazards (potholes, excessive gravel, roadkill, babies crawling across the road) with proper hand signals. Most of all, you are to assume the lead at some point or be left aside, the stigma of a “wheel-sucker” permanently attached to your once good name.

The purpose of the peloton is not social although certainly the camaraderie is a useful incentive to pedal. It is simple science: someone who rides in the middle of a line can conserve up to 40% of their energy as they settle into the slipstream. The rider in the front of the pack is working the hardest, not only breaking wind, as it were, but pulling those behind. Riding with thousands of other riders, it is usually OK to jump into a line if you feel you can keep the pace but again, at some point you must be prepared to assume the position…of being the lead. As a 6’1″, 200 lb rider, I am usually a welcome presence to buffet the wind.

But last July something was very wrong. I was terribly “off.” Hiding my fatigue, I “Proutied on,” meeting up with friends to ride into the wind. I quickly lagged behind and lost everyone altogether. I chided myself for not training hard enough. Unlike past years, I did not stay up late, have a drink or two, or have a late night snack. Like many of my friends, I can usually rally and push through the fatigue and pain. But this day was different and I did not understand.

I am not one to give up easily. I am not one to admit defeat until every option has been exhausted. And then there is my Leo pride. But I simply could not power on. At around mile 65 I pulled into a SAG stop, a supported area with a repair station, power bars, Gatorade and first aid. SAG stands for support and gear. By then, I was told I wold have to get a shuttle back or take a shortcut back as it was getting late and I was beyond the cutoff point to complete the ride lest darkness ensue. There were very few riders, another indiction that I was indeed lagging. There were two other riders, sitting on the gravel, who carried the look of defeat on their faces. One, a lanky teenage boy who found out the hard way that pedaling 100 miles on a fat-tire 29″ wheeled mountain bike was more work than anticipated. The other, a rugby-esque twenty-something who clearly had been drinking heavily the night before and was complaining about his buddies dragging him into this mess, was also waiting for the rescue shuttle.

We loaded our bikes into the back of the four-door pickup and climbed in, none of us making eye contact at first, as our pride masked our defeat. It was as if we were in a cab with thick walls of scratched plexiglas between us all. The driver, a kind volunteer who took his job seriously, drove on, calling in on the walkie-talkie that he was transporting three bicyclists back to the staging area and finish line.

Finally, we broke the silence and all shared our stories of why were such a bunch of lame-asses. “I should have listened to my friends” said the mountain bike kid. “I should have used my road bike!” he shared dejectedly. “I’m still hung over,” exclaimed the rugby guy. “What an idiot I am.” “I didn’t train enough” I told them. “I should have ridden more.”

As we barreled down the highway back to Hanover, passing the ones still on the road, we tried to hide our embarrassment. I overheard the driver speaking with some of the other volunteers on the radio. There had been a pileup ahead about ten miles from the finish. “It doesn’t look good” someone shared over the static. I didn’t think about it much except to feel sadness that there had been such an accident. But as we approached the emergency vehicles blocking the road I had a wave of fear wash over me. “STOP” I shouted. “Those are my friends!”

I immediately recognized several of my colleagues and the truck pulled over. I told the driver that I was going to see if I could help and that I would bike back on my own, at which point the other two in the truck also got out, taking their bikes.

On the pavement were two of my friends and another rider. One was being slid onto a backboard and the other was about to be placed on a stretcher. Other friends looked on, fear and concern hung in the air. They had somehow gotten their handlebars entangled with another rider and happened to be brother and sister, both excellent athletes and remarkable people. Their children, also exceptional athletes, were riding with them. The brother wound up bruised and battered but OK after flying over the handlebars. His sister, a cancer survivor, did not fare as well and I believe she broke her hip. Several months later she succumbed to the cancer, leaving a beautiful legacy of kindness, friendship, and athleticism.

After the ambulances drove away, we all got back onto our bikes. No one had noticed amidst the frenzy that I had been dropped off. They just figured I had caught up. I said nothing as I was so stunned by the events which had unfolded. As we pedaled the last ten miles back to the staging area and finish, knowing a festive scene replete with delicious food, music and free massages awaited, I contemplated the road ahead and the one left behind.

As I crossed the finish line, with the multitudes welcoming every rider with cheers of congratulations and celebration, I felt an enormous lump of guilt lodge in my throat and all I could think of was the scam of marathoner Rosie Ruiz. Walking around the celebratory scene, I now felt doubly awful, physically and emotionally. I had cheated myself and deceived my friends. Near the pizza stand I caught the eye of the hung over rugby guy hanging with his other presumably less hung over friends. He smiled, raised his finger to his mouth and whispered “shhhhhh.”

It would only be a few weeks later that I would come to understand just how different that day was. We now know that my brain was beginning to bleed and swell from the tumor and was ever so slowly herniating into my brain stem, it is indeed a miracle that things did not come to a complete end that very day. By the time I reached the hospital two weeks later, I was told that I was within 24 hours of dying instantly.

Bicycling is my first athletic love, shared perhaps with any winter sport, particularly cross-country and telemark skiing. Growing up, bicycling for me was less about exercise than it was about freedom. During my middle and high school days, I would often bike the 4.36 miles from my home in Melrose Park, PA to Jenkintown, PA where I went to school. My other option was less attractive: riding with mother who happened to teach at my school. Commuting with Mom, when I, a somewhat typical, slightly incorrigible adolescent, usually meant arguing with her until we crossed the first speed-bump onto campus when she would then turn to me and say “I am no longer your mother, I am Mrs. Green. See you at the end of the day” at which time we would pick up our argument where we left off that morning. So riding my bike was a thrill, a joy and a necessity.

My first major purchase as a teenager, after my first hi-fi stereo, complete with integrated tape deck, record player and am/fm tuner, was a bicycle. If memory serves, it was in 1983, a sophomore in high school and I had spent much of my time at the local bike shop which was run by a crew of very crusty, thickly bearded, wire-rimmed-spectacled revolutionaries. I had set my sights on a Specialized Expedition Touring bicycle replete with multiple braze-ons for three water bottle cages. Outfitted with the proper rear and front racks and panniers, mirrors, frame-fitting pump and handlebar bag, it would be all I needed to begin my two-wheeled journey to who knows where.

Prior to the Specialized touring bike, which would carry me from Milford, Pennsylvania to Boston, Philadelphia to New Orleans and many other destinations near and far, I had my share of banana-seated, high-handlebar cruisers, heavy, steel ten-speeds and at one point a pseudo-aerodynamic steel 12-speed which had cast aluminum covers on the brakes and a flattened handlebar to allegedly “slice” through the wind. Mind you, these were the days of protecting your head with one of three choices: nothing, a hat, or an oversized white Bell helmet with red reflective tape, giving the rider the appearance of being an escapee from a mental hospital.

In college, my first year, with no car to speak of, I again invested in a new bike. 1985 saw the rising tide of the mountain bike coming into its own. 1981 saw the first mass-produced mountain bike, the Specialized Stumpjumper, but initially most bike companies were wary or not interested. I had to get in. In fact, I was one of two students on campus at the time who owned these relatively new commercial inventions. With roots in California, specifically the hills of Marin county and Mount Tamalpais, where counter-culture types would retrofit Schwinns with fat balloon tires and motorcycle parts and fly down the mountains with reckless abandon, mountain biking was still nascent. Mountain biking has origins tied to cycle-cross in Europe where bikes were made more rugged to offer an exercise alternative in winter. Names like Joe Breeze, Ned Overend, Charlie Kelly, Tom Ritchey, and Gary Fisher became part of my knowledge base and I would devour whatever I could about mountain bikes. I even sought out Ned when I lived in Durango, Colorado, where he worked as a bike mechanic.

Mine was a deep green Cannondale with motorcycle-styled hand grips, enormous aluminum tubing, large caliper brakes and a 24″ rear tire with a 26″ in front. That beloved Cannondale was my best friend and saw me through some terrific ups and a few downs. At one point it was even stolen and later retrieved off the porch of some punks in Utica who had tried to sell it at the same bike shop where it was purchased. It’s ALWAYS GOOD to get in with your local bike shop! Case in point, I could argue I owe a very good chunk of my long-term happiness ( as well as a depleted bank account) to the folks at West Hill Shop: the mechanics and sales people, the former owners the Quinns and the current owners Jim and Diny.

There is something incredibly beautiful and seductive about the art of the bicycle. Poetry in motion. Even the clothing especially that of the old-school, appeals. Vintage bicycle shops which quite literally make me tremble include Old Spokes Home in Burlington, Vermont, Landmark Vintage in NYC and Via Bikes in South Philadelphia. I love to watch the Tour de France and admire friends who are superior athletes on the bike.

I continue to be moved and inspired by one dear friend who, in addition to being a champion skier, having most recently competed in the IPC World Cup Adaptive Races, is also a world-class hand-cyclist. Alicia Brelsford Dana, paralyzed from the waist down since an accident in high school, did not let her physical challenge stop what she loved doing. She has cycled across the United States, championed in dozens of races, often with first-place results including winning the Vermont City Marathon hand-cycle division. She is also an artist, mom, sister and daughter. I know she is an inspiration to all who learn of her fortitude and for those who are lucky enough to know her, she is a beacon in the darkness, even more so for me now that I have my own darkness to face.

Another inspirational friend with a love of cycling, also enduring the challenge of brain cancer, is someone whom I have never met in person as she lives in England. Anne Feeley started Brains on Bikes. I was introduced to her through an amazing organization, Accelerate Brain Cancer Cure (ABC2) Two years ago she bicycled from San Francisco to Washington, DC, a total of 3,708 miles and helped raise funds and awareness for cancer research. A remarkable individual, she was in training to launch her next project, Brains on Boats and row across the English Channel. Unfortunately, her cancer has returned, delaying this noble effort but I know her mind, body and faith are strong and I think of her often.

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Ah yes the darkness. How am I? How I am? I’m great. I’m not. I’m up. I’m down. Generally I am pretty damned good, buoyed by the love of friends and family but sometimes the cancerous water washes over me in an attempt to drown. I resist. I fight. Treading water physically and metaphorically is no longer possible as both shoulders are in fact severely torn, due in part, we think, from the weakening of the muscles from steroids taken after the two craniotomies. So I must learn a new way to swim. I am still trying to excavate and then excise the words “incurable and recurrent.” The next MRI is in May.

Blinded by headaches akin to having a white-hot steel rod sliding through my skull, I am about to launch myself into a new phase of pain management involving severely restricting my sugar intake and consumption of carbohydrates. Acupuncture, which I have never tried, is on the menu. My man-cave/writer’s cottage/jam room/meditation retreat project is underway. Work lifts me up. My daughters lift me up. Barb lifts me up. My family lifts me up. My friends lift me up. And yet, the demons of depression lurk and, once in a while clock me on the head as if to say “don’t forget about us…we are coming for you…” Dementors all. A large part of the so-called battle against cancer isn’t just trying to eat right, exercise and find new cures, which are all of course critical. No. The biggest battle cancer wages against its victims is that which lunges for the jugular of the spirit and mines the soul as if by some monstrous auger. The same can be said for any terrible, debilitating disease.

Thank heavens for the bike because I cannot wait to ride again. Bicycling is a salve, an intoxicant, an art form. It helps me forget that there is an octopus inside my brain whose tentacles are, at the moment, resting between the coral, waiting…watching while I pedal on.

“We wanna be free! We wanna be free to do what we wanna do. We wanna be free to ride. We wanna be free to ride our machines without being hassled by The Man! … And we wanna get loaded. And we wanna have a good time. And that’s what we are gonna do. We are gonna have a good time… We are gonna have a party!”

-Peter Fonda as “Heavenly Blues” in Wild Angels, 1966

i’m fixing a hole…

“I’m fixing a hole where the rain gets in
And stops my mind from wandering
Where it will go

I’m filling the cracks that ran through the door
And kept my mind from wandering
Where it will go

And it really doesn’t matter if I’m wrong I’m right
Where I belong I’m right
Where I belong”

- Lennon and McCartney

Mark's moon...8.1.11

2.28.12...the space within

Yesterday was a landmark occasion. MRI, blood tests and a visit with the remarkable Dr. Fadul. The MRI came out looking good in that no visible tumor growth was noted. The Dr. was very pleased.

Amazingly the hole in my brain will remain, which is the cause of some physical imbalance, left-side deficit… but no big deal. This, along with two “full-thickness tears” of my rotator cuffs is of no consequence at this point as long as I can see, hear, touch, taste and smell. The whiteness around the margins of hole, now filled with CSF (cerebral spinal fluid) where the tumor was removed, is leftover irritation from surgery and radiation. While the diagnosis of “incurable and recurrent” remains, that the radiation itself sometimes results in other harmful effects including radiation-induced cancer not showing up until 5-10+ years later, and the Dr. confirming once again that this was a rare cancer especially for an adult (explaining my childlike tendencies) … at least now I can breathe a little more deeply. Relax a little more. Let the anxiety and fear melt away as best I can. My next MRI will occur in May. I have a “headache clinic” coming up to deal with that element.

Libby, Hannah and Barb were with me all along yesterday, as they have been from the start, with the anxiety accumulating like so much snow…the moment of truth was upon us and one of the more moving moments, in addition to hearing the scan results, was the time in between the MRI and the visit with Dr. Fadul. We wandered to the hospital chapel, a small, quiet non-denominational space with a beautiful twenty-foot stained glass window of a New England night-time sky designed by beloved Vermont artist Sabra Field intended to symbolize faith and hope.

We sat there in silence, the gray-blue light of the winter sky pushing through the glass, holding hands, each of us with tears welling in our eyes. What news would this bring? What did the immediate future hold in store for us and how would we manage?

I realized then and there how rare it was for us to simply sit together, silently, with the ones you love. Words needed not be spoken to understand what we were all feeling: love, fear, sadness. But most of all, we had faith and hope. The Milky Way led us there…the Milky Way led us there…

Milky Way by Sabra Field

torn and frayed…

And his coat is torn and frayed,
It’s seen much better days.
Just as long as the guitar plays
Let it steal your heart away,
Let it steal your heart away.

- Mick Jagger & Keith Richards, Torn and Frayed

1:30 am

Since this blog is part health confessional, part personal purging of tales old and new, some sordid, some enlightening, I thought I might begin by sharing that the march towards February 28th (next MRI) slogs ever onward. My life, in between the laughter, tears, fear and anticipation about all that is yet to be, will be measured by three-month increments, when the MRI’s are held and we check in on the state of affairs within my brain. Most of the time, I simply carry on. As the dust from this dust storm settles, and the chaotic din of the initial event is filed away in the memory bank, the realities of simply finding a way to live with cancer have proven to be a physical and emotional mountain of a challenge. Frighteningly, particularly in the past several months, several dear friends have also been diagnosed with cancer, two of them with dire prognoses. As I dig in and continue my late night conversations via Skype, phone and email with leading research scientists, doctors, and others on the forefront of the resistance movement (Occupy Cancer?) I return to a phrase shared by a leading professor of neurosurgery and neuroscience who almost never, ever, uses the “C” word but instead refers to each of our own “personal hyperplasia” implying that cancer has become too much of a catch-all term fraught with generalizations and misinformation which only adds to the confusion and fear. Cancer is indeed a very personalized and unpredictable affair.

In the meantime I, along with many other of my peers, experience the slings and arrows (as well as the joys) of day-to-day living. When I was young, I would hear relatives and family friends in conversation and thought “when I’m that age, I hope my friends and I never spend our time talking about what ails us. Surgeries, breaks, tears, exams, tests, sores, medicines, and the like. How sad and boring! That I now have a pill box containing seven compartments for each day of the week only conjures up memories of my late grandmother Ethel, standing before an old porcelain sink in her fuzzy slippers and nightgown, doing the math of medicine.

Now that I am that age, that is to say the same age as my parents were when I deemed their topic of conversation dull, my friends and I do, in fact, have many other things to speak of: children, community, music, home improvements, cars, technology, arts, skiing, hiking, bicycling, politics, religion, (which, sadly, seem to be one in the same these days), concerts, food and of course, sex. (see politics and religion) The topic of health, however, continues to worm its way into more and more conversations, taking center stage as we all age.

The Thrill of Victory, the Agony of De Feet (sic)

Such conversation was evidenced by recent discourse among friends. On a recent nordic ski weekend at the Craftsbury Outdoor Center in Craftsbury, Vermont, where we have gathered with other families for many years, eating excellent family-style meals, staying in renovated dormitories and skiing into the night in what the late, great Vermont Governor Aiken referred to as “God’s Kingdom” or the “Northeast Kingdom,” we shared what has become an annual review of our collective aches and pains.

One friend had a “TENS” unit, strategically delivering mini-shocks to interrupt and confuse the nerve pathways which inform pain, to his broken collarbone. Among the crowd, four of us had cheilectomies performed on our large toe joints due to bone spurs (osteophytes) from what is sometimes called “skiers toe.” The injurious bone is simply carved down to ease the friction and irritation of regular movement. Old injuries rearing heads, new injuries added to the list. Bad falls and wipe-outs including one entanglement in a barbed-wire fence.  And yet we all forge ahead, driven by the inspiring beauty of the snow-covered Vermont back-country, the joy of being together and the aim to stay fit.

Between us all, we had created a very fine palette of injuries: ruptured tendons and ligaments, broken collar bones, arthritis and many other sports-related injuries as well as the more mundane events such as slipping on the ice. And then there were the other discussions, among them the indignity of prostate and cervical exams and the forced cleansing before a colonoscopy for which I am now preparing. (I have to drink a GALLON of that stuff? I can’t EAT?!)

I supposed to have one of these every year but time slipped away and it has been several years. Normally not needed until the time when one reaches their 50′s,  I have been identified as someone who carries the Lynch syndrome HNPCC gene (Hereditary nonpolyposis colorectal cancer) which is “an autosomal dominant genetic condition which has a high risk of colon cancer^[1] as well as other cancers including endometrium,ovary, stomach, small intestine, hepatobiliary tract, upper urinary tract, brain, and skin. The increased risk for these cancers is due to inherited mutations that impair DNA mismatch repair.” (Source:Wikipedia)

I do hope Dr. Rawls is there to help…

And woe to Homer’s doctors…

Thanks in part to the work of famed news anchor Katie Couric, her husband, the late John Paul “Jay” Monahan, and their family, millions of people are now getting regular colonoscopies, resulting in a marked downturn of deaths from colorectal cancer. In 1998, when Jay, a father of two and noted attorney who also provided legal analysis for MSNBC, NBC News and CNBC, passed away from colorectal cancer at the age of 42, his wife and the family wanted to ensure that this disease would not kill more unsuspecting people and did so by and raising awareness of the importance of screenings. Katie actually held a live colonoscopy on national television, a landmark event in which the term “Couric Effect” was coined. Colorectal cancer is the third leading cause of death among men and women in the United States with 140,000 new cases predicted this year, resulting in about 50,000 deaths in 2012. These statistics continue a downward trend thanks to Jay’s legacy. The Jay Monahan Center for Gastrointestinal Health at New York Presbyterian Hospital/Weill Cornell Hospital stands as testament to Jay’s life and his faithful friends and family.

So what about brain cancer? Certainly every cancer needs its 15 minutes of fame, at least. Susan G. Komen (Planned Parenthood debacle not withstanding- shame on you Karen Handel, Nancy Brinker and Cliff Stearns) has given, thankfully, breast cancer countless hours of “fame” resulting in the prolonged or saved lives of thousands, if not more, women.

I have come to believe, based upon my own ongoing research and conversations with leaders in the field of brain cancer, that we are nearing the top of the mountain. Rather than treating only the symptoms, we will be able, using bio-markers and looking at cancer through the cellular, genomic lens, to attack mutations at the very earliest stages of cell development.

And what of the title “Torn and Frayed?” Oh yeah, I have completely shredded both of my shoulders with complete rotator cuff and shoulder tears. The left side popped from simply rolling over in bed (simply!) and the right shoulder from falling while ice-skating. I am not unconvinced that my years of asthma medication (steroidal) and the dexamethasone after surgery did not contribute to muscle weakness, leaving me susceptible to tears. This merely adds to my laundry list: two torn knees, one ruptured quad muscle (unrepaired) and one ruptured bicep tendon.

The “Being Patient with High-Maintenance Patient” award certainly goes to Barb who has endured more than her share of hearing my moans and complaints of aches and pains and until recently, my high-level of irritability which has since undergone a sea-change as I realized, however insidious, I was slowly becoming even more difficult to live with than I was even before the calamity and was going to scuttle everything we had worked towards with my bouts of moodiness and unpleasantness. I had to change and re-focus on the positive. While I do not run away from or deny the negative, I am working to channel those negative ions into a safer place.

And while the pain from these tears is often excruciating (I bought my own “TENS” unit, helping me get through the night) I take it in stride. “Bring it on! Demon Body Spirits!” I shout. If I can deal with cancer in my brain and chronic headaches, who cares about a few more tears here and there…I can still ski and bike. My javelin career? That’s finished. I have miles to go, however, before I sleep. Soon, it’s off to California with Hannah and Libby for the August vacation that wasn’t…”hanging ten” off the shores of La Jolla may need to be reduced to hanging two or three…

Meanwhile, Lewis Black provides me with a smile thanks to one of his many apoplectic rants:

And a nod to Keith and Mick….Torn and Frayed

of mice and men and Freihofer’s: “we’ll all float on ok”

“To a Mouse, on Turning Her Up in Her Nest with the Plough“

But, Mousie, thou art no thy lane [you aren't alone]
In proving foresight may be vain:
The best laid schemes o’ mice an’ men
Gang aft a-gley, [often go awry]
An’ lea’e us nought but grief an’ pain,
For promised joy

-Robert Burns, 1785
Scottish national poet (1759 – 1796)

Upon graduating from Hamilton College and after turning down several offers to teach, choosing instead to move to Burlington, Vermont with three other completely confused, adrift but well-meaning if not slightly off-center friends, I took many jobs in what was my “experiential post-graduate” year: pool cleaner for wealthy Canadians who owned property along Lake Champlain, bank teller at the now defunct Bank of Vermont, construction worker on the Winooski River Bridge, waiter, stock worker at Karhu Skis, and in one of the more memorable moments, roll-sorter at Freihofer’s industrial bakery along Shelburne Road in South Burlington.

This was temporary work and for reasons which quickly became obvious, I knew why. The training lasted a lengthy ten minutes as I, along with a few other cheeky college-aged kids and one overweight, tired, desperate man with a scraggly beard, were lectured on safety procedures and provided with hair nets and earplugs. After signing some sort of release document lest we accidentaly be incorporated into a vat of donut batter, we were given a cursory tour of the expansive facility. We entered an enormous, brightly lit room with high ceilings and a stupefying amount of noise, even with the earplugs. Break room: check. Bathroom: check. Emergency eye wash station: check. Big red emergency button to shut down equipment: check. Shouting over the roar of machinery, the supervisor explained this particular job of the morning.

Pointing towards one of the larger machines with gears, chutes and a conveyor belt, he yelled to us that in five minutes, shooting from the trap door high above the machine would be 50,000 fresh, mechanically baked, sub rolls. Our task was simple: identify amidst the chaos of the sub roll-rush hour which of the rolls, traveling at fantastic velocity, were defective while at the same time turning any upside-down rolls right side up. I could hear my grandmother sighing and exclaiming, rhetorically with that Jewish-Guilt-Laden lilt in her voice, “For this we sent you to college? Oy vey iz mir!” (“Oh woe is me” in Yiddish)

Suddenly, with bells ringing, buzzers buzzing and lights flashing, the door above our heads slid open ominously and in an instant thousands of the soft, chewy loaves came pouring out like ants on a burning log. I glanced at my compatriots, some who were slack-jawed, others fixed with an intense gaze, as if in a battle for their lives. Me? I started laughing uncontrollably. It had come to this. My summer was not going well despite living in a great city and seeing a lot of friends. My living arrangements had deteriorated with my housemates and I was becoming tired of the lack of consistent employment. And there I was, sorting submarine rolls with a manic fervor. In between the laughter I think I was also crying. “There’s no place like home… there’s no place like home.” Calling for Auntie Em was to no avail.

Needless to say I did not parlay my good fortune in roll-sorting into a career and, after an enriching winter of skiing and waiting tables as well as being accepted to the Peace Corps, which I had also deferred, I called the head of the school who had initially recruited me and took a teaching position. My experiment in “real life” living had ended. And I never looked at a roll the same way again.

Since the diagnosis of brain cancer, I have been met with and have sought out an enormous amount of information about my disease. To suggest that when the trap door of cancer was opened I was met with 50,000 submarine rolls each representing new information about cancer, the brain or brain cancer would not be an exaggeration.

Since the first craniotomy August 2nd, 2011, the fire which already burned within was turned up to maximum capacity. As someone who dives into almost anything head first (usually for better, sometimes for worse) my hunger for knowledge as it now relates to all things neuroscience and oncology is boundless. These rolls I am happy to sort and eliminate those which are defective.

As with any health-related topic, there is an enormous amount of information and misinformation available. The very moment after I was wheeled into my hospital room after surgery the nurses had to pry my smartphone from my hands as I wanted to know everything about this disease: what it was, how it happened, how to prevent, if possible, its onslaught, what was being done to find answers and cures, who was at the forefront of research, where the experts were and so on. When I was told it was incurable and that it will recur, words which I cannot seem to shed, I viewed this is as challenge, not as a threat.

The doctors, nurses, technicians and support staff at Dartmouth-Hitchcock have been nothing short of exceptional. I have been blessed with the good fortune of living within an hour of world-class medical care. I flew to Houston to consult with more exceptional doctors at MD Anderson and I continue to meet new players in this “great resistance” movement against cancer. However they are not machines and cannot possibly know all there is to know, especially given the speed at which information is now relayed.

I feel deeply compassionate towards those in the world who are less fortunate and in many cases, have few or no options at all. I also have excellent insurance thanks to my employer. The swelling from my expanding tumor, had it not been removed, would have killed me within a matter of days. It was killing me. And then there is the cancer. The overall cost of my continued care, including two surgeries and radiation therapy would have surely bankrupted me and my family. When Blue Cross-Blue Shield of Vermont called me to “check in” I was immediately suspicious. “What were they after? What should I tell them?” I soon realized through continued conversation with my assigned representative Colleen, that BCBS of VT truly did care. Much like the community that is the state of Vermont, I felt embraced by the legion of health care professionals. I was so impressed I contacted the CEO who promptly replied with his own gratitude. It is not often, he shared, in his embattled industry that they receive a letter of thanks.

The ongoing health care discourse, which continues to rise in nasty fervor during this campaign season, leaves me sick to my core. (Visit this Washington Post article for a good mythbusting article on alleged “ObamaCare.”) I am not a policy analyst nor am I well-versed in the finer details of this issue except to argue that those who seek to dismantle Obama’s initiatives, while by no means the perfect solution, do not seem to be able to offer up any sound alternatives. The dividing line for many seems to be this: health care is a right not a privilege. Sadly I think many believe otherwise and take a Darwinian “survival of the fittest” position. We have also created an industry which appears to be more focused on “disease care” than health care and driven by financial incentive above anything else. It’s all backwards, this focus on treating the symptoms not the cause. An entirely healthy population is simply not as profitable, at least not with our current model.

The discussion of preventative medicine and the blending of Western and Eastern medicine is still nascent but is thankfully becoming part of the fabric of conversation and debate.

In the instance of brain cancer, as well as many other diseases, ailments and injuries, if there is not enough money to be made developing new treatments, there is little incentive for biomedical companies to pursue any further research or development.

It is with these ideas in mind that I have delved deep into finding out as much as I can about brain cancer and cancer in general. The spelunking has only begun to crack the surface. We have miles to go, down deep, before we sleep.

Of the many things I have learned in the past six months, the most profound realization, is that no matter how experienced, kind, talented or prestigious your health care providers are, they do not have, nor should be expected to provide, all of the answers. Just as the emergent model of personalized adaptive therapies are slowly gaining ground, rather than the traditional and often backwards, if not completely detrimental, one-size-fits-all model applied for treatment, each individual will hopefully follow their own path of learning and decide, in concert with their doctors and health care practicioners, what they feel is best for them.

Of course the risk evolves and can increase when patients err on the side of deleting standard protocols which generally have a known result. Steve Jobs spurned surgery for nine-months following his diagnoses of what was historically a treatable form of pancreatic cancer. His family was deeply upset by this. Ever an independent and deeply spiritual thinker, Jobs was intent on seeking his own paths for healing. It was only until it was too late did Steven admit that he wished he had not delayed the operation. While understanding that there is a personal responsibility we have to others who love and support us, somehow, I feel it is unfair to judge what anyone chooses to do with their health because in the end, it is their end not ours.

exosome

From the deep, powerful and ongoing discussions I have been fortunate to have had with leading researchers, doctors, investors and professors in the field of neuroscience and cancer, I now realize we are at a watershed moment in the history of cancer treatment. I have emailed, Skyped, phoned and met with some of the most fascinating, exciting professionals in the field. I am now a cancer groupie.

No expert I, an English major with a minor in studio art who knows little about science let alone cancer aside from my religious reading of New York Times Science Times section on Tuesdays and WIRED magazine. My apologies for any errors. (kindly let me know) A few of the terms we will be hearing more and more about include: eco-oncology, bio-markers, neutraceuticals, (food as medicine) cellnomics, (understanding cellular phenotype and function) adaptive therapies, exosomes (microvesicles containing protein and, as recently discovered, RNA- great article here), and orthotopic xenotransplantaton in which cells, in this case cancer cells are inserted for research into another organism, usually laboratory mice born with no immune system. I will share more in a later post about my ever evolving cancer diet which is now incorporating supplemental melatonin, green tea extract, turmeric and vitamin d.

As for the process and politics of advancing new therapies and treatment, it takes an average of fourteen years, and 1.2 billion dollars from inception to FDA approval for a new drug to get to market. In a soured economy and decreased, flat-lined or modest increases in budgets for cancer research and treatment development, companies have become exceedingly risk-averse both in funding and in research models. Incentives for grant funding do not inspire innovation but rather the safely traveled road. Many ideas fall into what is known in the field as the “Valley of Death:” those which become lost in the chasm between scientific discovery and the doctor’s office.” (see excellent Newsweek article)

One of the most aggressive and exciting cancer organizations is ABC2, also known as Accelerate Brain Cancer Cure. Founded by Steve Case and his late brother Dan, who passed away at 44 leaving a wife and four children, ABC2 is not an organization sitting on top of an enormous war chest of money. Rather, they have raised an impressive $17M dollars in just over ten years for immediate dispersion to leading researchers and facilities as well as for-profit entities. Their mission, inspired by Dan’s incredible intelligence and savvy is simple: “to invest in research aimed at finding the fastest possible route.” Taking a venture capital model, they seek to “buy down” the risk for companies as an incentive to invest in new brain cancer therapies. Amazingly, only three FDA-approved brain cancer treatments have been approved in the past thirty years. ABC2 seeks to provide leadership, leverage and impact now because there is no time to waste. The sandglass does not have endless grains.

In addition to supporting the work of these fine individuals associated with ABC2 in any way I can, my blog has been utilized for the Norris Cotton Cancer Center’s annual appeal, my letter of thanks to Sojourns Community Health clinic was used for their annual effort and both of my daughters have formed groups in their school to address cancer concerns and the need for support. As a Dartmouth student who was raising funds for veterans of the Iraq and Afghanistan wars shared with me: “raindrops fill lakes.”

And what of mice and men? (I love Steinbeck) We shall not let these plans go awry. In my conversations with leading research scientists and doctors I have been made aware of the possibility that I may in fact have my very own line of “Mark Green mice” who will sacrifice themselves for the “cause.” My very own cancerous brain tumor cells will be inserted into tiny mouse brains for the purpose of study and research and perhaps help find treatment or a cure for ependymoma, a rare cancer normally afflicting children. I do not believe they will have tiny wire-rim glasses. There are “mouse hospitals,” across the country and around the world housing literally hundreds of thousands of mice, many born with no immune system so as to create a “blank slate,” who are the recipients of similar treatment for hundreds of diseases. One, located at Columbia University, The Olive Laboratory is solely dedicated to researching pancreatic cancer. I will admit the curious absence of discomfort upon learning this but it certainly challenged my ill-informed knowledge of the importance of research, even when it means using mice for laboratory experiments. Are we, at the core, really more valuable than a mouse? I simply don’t know.

I have written before of my belief of animal omens and spirits in Regnum Animale. The bees stinging me directly on my head after surgery, the recurrent bear dreams, the suicidal squirrel. I suppose one of the qualities that differentiates us from other species is our ability to rationalize. So either I can feel guilty for my hand in the xenographic transplantation of said mice or thank them for their noble if unwilling sacrifice.

Oddly, in this month of the mouse, I encountered mus musculus omens by the dozens this weekend. As I prepared our garden shed for rehabilitation into a much longed-for writers cottage/music-jam room/yoga retreat/man-cave, to be insulated, electrified and finished with rough-sawn Vermont pine, I took to cleaning out the entire structure, formally used for bike and ski storage. (1,000,000 thanks B for your patience)

Sitting atop a shelf was a box containing a small unused satellite dish. I pulled it down and rested it on a chair. I noticed several holes and gathered that these portals had been created by mice. I opened the box and let out a loud shout as a dozen or so mice came pouring from the heavily nested domicile, jumping across my body as if they were spring-loaded. Beneath the mounds of string, pine needles, chewed towels and who-knows-what else was a fully occupied mouse nest. They scattered out and into the woods. They were owl fodder now.

So I tip my hat to my future brain cancer mice, whoever you are. Thank you. We’ll all float on, ok.

Addendum:

The Burns poem was written after he uprooted a mouse’s nest while plowing a field. The poem is an apology to the mouse, also immortalized by Jethro Tull in “One Brown Mouse.”

“To a Mouse, on Turning Her Up in Her Nest with the Plough“ Small, crafty, cowering, timorous little beast, O, what a panic is in your little breast! You need not start away so hasty With argumentative chatter! I would be loath to run and chase you, With murdering plough-staff.I’m truly sorry man’s dominion Has broken Nature’s social union, And justifies that ill opinion Which makes thee startle At me, thy poor, earth born companion And fellow mortal!I doubt not, sometimes, but you may steal; What then? Poor little beast, you must live! An odd ear in twenty-four sheaves Is a small request; I will get a blessing with what is left, And never miss it.Your small house, too, in ruin! Its feeble walls the winds are scattering! And nothing now, to build a new one, Of coarse grass green! And bleak December’s winds coming, Both bitter and keen!You saw the fields laid bare and wasted, And weary winter coming fast, And cozy here, beneath the blast, You thought to dwell, Till crash! the cruel plough passed Out through your cell.That small bit heap of leaves and stubble, Has cost you many a weary nibble! Now you are turned out, for all your trouble, Without house or holding, To endure the winter’s sleety dribble, And hoar-frost cold. But little Mouse, you are not alone, In proving foresight may be vain: The best laid schemes of mice and men Go often askew, And leave us nothing but grief and pain, For promised joy! Still you are blest, compared with me! The present only touches you: But oh! I backward cast my eye, On prospects dreary! And forward, though I cannot see, I guess and fear!

my own private idaho

Life is not a journey to the
 grave with the intention of
 arriving safely in a pretty and
 well-preserved body, but rather to
 skid in broadside, thoroughly used
 up, totally worn out, and loudly
 proclaiming: Wow…. What a
 ride !!!” (Hunter S. Thompson)

When people ask how I am, I usually respond good-naturedly with “I feel great. Tired. But great.” The reality is that I am living in my own Private Idaho, which is not only a reference to a terrific film by Gus Van Zant, but, according to The Urban Dictionary, means “living inside an Idaho potato”, or a very small space. Metaphorically, it refers to someone who is not paying attention because he is daydreaming, or under the influence, or otherwise wrapped up within his own very narrow sphere of interest or frame of reference.”

I try not to allow this potato-space to fill up my head too much but when I do, I become immobilized. Leaden. The future becomes worrisome. But for anyone who has run a race, climbed a mountain or otherwise pushed themselves to their limit, you know you must not stop. You…have…to…keep…going. My grandfather’s 94th Infantry, 302nd division’s motto was “The Command is Forward.” Yes it is, grandpa. Yes it is.

One way I have faced the dragon, stealing a popular marketing phrase from a familiar sneaker company, is to “just do it.” The sad irony is that this slogan, perhaps one of the most recognizable catchphrases in the history of advertising, was inspired by the last words spoken by murderer Gary Gilmore before being executed by firing squad. His final utterance, “Let’s do it” was later appropriated by advertising agency Widen + Kennedy for Nike. Brilliant. Sick, but brilliant.

“Just doing it” in my case has meant pushing myself perhaps a bit too much- my body is now screaming at me to get more rest after the busyness of the holidays and spending some of the time with my family in Philadelphia. Oddly my illness was never brought up- it wasn’t that we were avoiding anything, it was, as my mother shared at one point, simply too hard to “go there.” I attended a mini high-school gathering where friendships of old were sparked anew as if it was yesterday.

New Year’s weekend we traveled to NYC where I celebrated the new year in Times Square with my daughters Hannah and Libby and Hannah’s friend Lily. The night before we stayed up into the wee hours with friend Buck and his band. New Year’s eve, at around five o’clock, we headed into Manhattan from Brooklyn. We all had fun but it was also a completely absurd folly: two million people crammed full on nearly every street. The sea of humanity was amusing, enlightening and disturbing all at once. The following day we went swimming in the frigid Atlantic with thousands of like-minded crazy people in Coney Island to celebrate the first day of the year. Two days later we were skiing at Okemo mountain with -10 wind chill. Days later I was nordic skiing at Grafton Ponds with Hannah’s team and old friends. What a great and fitting way to start the year.  Just do it has left me enriched, albeit with a few torn strands of muscle, due in part to a lack of regular exercise and from the side-effects of the steroids taken for swelling and inflammation.

(Bucky is at 2:36!)

Despite all this, I remain intact physically and emotionally. While I continue to meet with experts in the field for consultation and I continue to work towards a healthy regimen of meditation and physical activity, my days are mostly what they were before the calamity.

The next big day is February 28th when, along with a general exam and blood work, I will have my next MRI.

Meanwhile, the polluted water of the New Hampshire primary will soon recede and flow to another state, carrying with it the usual political flotsam and jetsam: the hate, hypocrisy, fear mongering, war mongering, posturing, lies, promises never to be fulfilled and the deep-seeded, sometimes cloaked sometimes naked viciousness directed towards women, children, teachers, the environment, science, health care, the poor, minorities and immigrants.

I refuse to watch the news coverage of the primary with any regularity as it all seems so shallow and meaningless. Just noise and talking heads. A mindless waste of outrageous sums of money. (I seem to recall my father owning a fake brick fashioned from foam to throw at the television whenever Nixon was on) Politics presented as sport, as if it was the Superbowl or the Kentucky Derby: driven by ratings, ad revenue and presented by Ken and Barbie dolls masquerading as newsmen and women. Substance in the news seems to be a rare commodity. Where art thou Walter Cronkite? Murrow, Huntley, Brinkley? Jennings? Brokaw?

So I keep my chin up and move forever forward and try each day to laugh as deeply as possible, dance whenever an opportunity presents, breathe as intently as I can, strive to help others and inhale the beautiful, brisk air of winter. And thank goodness for the B-52′s! (may I admit a continued crush on Cindy Wilson?) Were they actually singing about the primaries in Rock Lobster? I think so.

Happy New Year!

“Here comes a stingray
There goes a manta-ray
In walked a jelly fish
There goes a dog-fish
Chased by a cat-fish
In flew a sea robin

Watch out for that piranha
There goes a narwhal
Here comes a bikini whale!“