“Many men go fishing all of their lives without knowing that it is not the fish they are after” – Thoreau

“Not all who wander are lost” – J.R.R Tolkien

When I was around twelve or thirteen, I placed a map of Alaska from an issue of National Geographic next to my bed. Pinned through the dark scores between the faux walnut paneling, the map, along with that issue became a dreamscape of grizzly bears, vast terrain, soaring snow-capped peaks, and salmon-filled rivers. I imagined planes equipped with pontoons landing on remote lakes or planes with skis gliding onto the frozen tundra. I had delved into what became one of my most memorable books during those formative years, John McPhee’s Coming into the Country. I knew then that I wanted to become a bush pilot. Reading his other books equally captivated and inspired but this one left me hungry. I’ve always been hungry. And restless. And now with another lightning bolt hurled my way (damned you Zeus give me a break!) my hunger for life and living has only increased.

Tuesday was a rough day. Aside from the usual bother of the early morning commute to Dartmouth for a 6:00 AM MRI (a necessary lifesaving device of aural claustrophobic torture) and the din of hospital life I was told soon after that the scan showed “significant” tumor growth and that they were not going to administer chemotherapy as the Avastin/Carboplatinub combination was not having its desired effect. The tumor, a unique grade III mixed glioma with astrocytic and ependymal cancer cells is now being treated as a GBM, a glioblastoma multiforme.  “It’s time to get your affairs in order” I was told. My hourglass suddenly needed more sand.

It was timely then that I happened to visit a therapist just two days later whom I had not seen in awhile. A cancer survivor herself and one learned in the ways of Buddhist practice, we shared moments deep and light. “Cancer is a great opportunity for spring cleaning” we laughed. At one point, when speaking about being or doing something audacious,  I said “so little matters now” to which she replied “you can’t even impress yourself.” She went on to share “you are free to experience life without the burden of needing to build something, you are just experiencing.”

The day after I learned of the results I put my beloved Dartmouth made-in-Maine carbon road bike up for sale as my balance had deteriorated too much to risk a fall on a skinny-tired bike with clip-in pedals. For the moment, thankfully, I can still use a mountain bike. The week prior I had attempted to telemark ski at Stratton Mountain. Telemark skiing, another love, in which the heel is not fixed to the metal-edged ski but is used for backcountry or lift-service skiing, requires balance and strength I no longer have due to the cancer’s insidious effects on my right parietal lobe. Same goes for skate-skiing, a form of nordic cross country in which the skier skis in a skating fashion. So hang up my skis I must lest I meet my demise to an immovable object such as a tree or boulder. That said,  I can still snowshoe and cross-country ski in the traditional “classic” fashion.  I continue to work and my passion to raise maximum funds for Accelerate Brain Cancer Cure has only increased. Our largest event, held on Sunday, May 4th in Washington, DC, stands to raise over $2.5M for brain cancer research and I myself, along with my colleagues continue to reach out to those touched by this disease who may wish to support our initiatives.

Tuesday I head to Massachusetts General to see my neurosurgeon and another accomplished neuro-oncologist for consultation and within the next week or so I will fly down to Duke for another consultation about possible enrollment in clinical trials perhaps involving immunotherapies which uses the body’s own immune system to fight the spreading cancer.  I must also seriously eliminate or significantly reduce sugar and carbohydrates, something I have already been doing but can do better, which help feed the cancer.

I will continue to fight the fight and not just for myself but for my friends and family. Holding on to hope. To exceptions to the rule. There are many examples of those who far outlived any prognosis. Cancer, or any calamitous health event, impacts, like a meteorite, not just the afflicted but all of those in that orbit. It’s a scorched earth affair. The steady drum roll of cancer beats on as I continue to learn of others being struck. Without fail, every time I have gone to Dartmouth I run into friends who have just been hit. In one instance I even shared an infusion suite (a misnomer if there ever was one) with my dear, sweet, former uncle-in-law. At the very moment, thinking of the drum metaphor, the insanity of this unfortunate card we’ve been dealt is best captured by the mayhem of the Muppet “Animal” with apologies and in remembrance of Keith Moon. Stupid cancer.

“What will our children do in the morning if they do not see us fly?” – Rumi

Fly I must and fly I will.

 


zg

 

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“Mirth is God’s medicine. Everybody ought to bathe in it.” — Henry Ward Beecher

In a recent post, writer and stage IV non-Hodgkin’s lymphoma survivor Robert Kessler wrote in his blog a remarkable piece in which he took a stand in defense of blogging and took issue with a rather insensitive assault on stage IV breast cancer survivor and blogger Lisa Bonchek Adams by Guardian writer Emma Keller and her husband Bill, a former New York Times editor as they accused her of over sharing. This got my chemo-infused blood boiling in defense of my fellow blogging cancer brothers and sisters.

We all manage challenge differently. Some see it as an opportunity for growth, some retreat, some paint, compose, perform, some suffer greatly, some just “roll with it,” some take up arms, some just want to party like it’s 1999. Some try to check off their “bucket list ( if they have the time, resources and health to do so) as they acknowledge something has moved the clock forward prematurely. It’s not daylight savings time anymore. It’s just savings time. And some write. Publically and privately.

The piece by Robert incited me back to the keyboard. After my initial diagnosis of stage III mixed glioma brain cancer in the summer of 2011 and the subsequent five craniotomies, radiation, shunt installation, ongoing chemo regimen of Avastin/Carboplatin and seizure management, living with cancer is more or less just a fact of life. Eventually the Carbo will need to be stopped because over time the kidneys become overtaxed. The bills from co-pays and deductibles keep coming, the headaches and fatigue change like the weather, and as long as I keep giving something back to the amazing institutions which have helped and continue to save my life, the waters are steady. The tumor is still there, lurking. It has not shrunk nor has it grown. We are keeping the needle in the middle, the dam fortified, the waters at bay.  My younger daughter and I had the good fortune to Nordic ski in Quebec as we have every year (she, skiing an average of 20 miles a day, I much, much less so) while my older daughter raised over $11,000 for The Norris Cotton Cancer Center through a fundraising climb up Kilimanjaro. Proud poppa am I.

skl

Me and Libby, Mont Sainte Anne, Quebec

hannah kili

Hannah atop Kilimanjaro “Every little thing’s gonna be alright.”

One aspect of my own coping strategy is to tap more readily into the elements which provide nutrition to my heart, body and soul. Music. Food. Friends. Family. Laughter. My work.

I have music on throughout the house on at all times, usually Vermont Public Radio’s classical station. ( Yes I am a proud sustaining member!)

I love food. I love it more. I want to travel. I want to travel more. I do truly want to live each moment in the moment, as best I can for as long as I am physically and mentally able.

Friends far and wide, close and merely acquainted give me wind in my sails. My community, from the post office to the local café to the pub to the brain cancer community, offer a lift.

A walk, a ski, a snowshoe in the woods, fill me. And, when I remember, just being silent, maybe watching intently the birds at the feeders.

One of the elements of my living a happy life is avoiding stress and finding humor in between the crags of the day-to-day as well as that which vexes. I am fascinated by the science of laughter: the healthy chemical changes happening within the body when laughter takes hold. Example? A few weeks ago, during a particularly icy and snowy time, I got in my car, my dear black VW Jetta Sportwagen, started up and began to back out. There were some crunching noises I assumed to be chunks of ice built up in the wheel wells. I continued my exit rearward thinking if I simply powered out of the garage I would break free of whatever was causing resistance. The sounds became louder until I heard what I thought was a torrent of glass raining upon the roof. It was exactly that. I had driven backwards through the multi-paneled garage door, shattering every pane of glass, destroying every wooden panel, ripping the whole damned thing right off the tracks.

I had no idea what I had done nor the extent of the damage until further inspection. I winced and let out a “what the?” Then I started laughing. The whole scene was absurd. What else could I do? It was the healthiest response I could muster and it helped calm me down. “Whatever,”I said to myself. “Whatever.”

gara

“Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, ’cause it’s gonna have a long day doing it.”
― Jim BeaverLife’s That Way: A Memoir

 

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“If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.” ~ Winnie the Pooh

If we are the pins, and the bowling ball is the cancer, I am growing weary of how many strikes are being thrown, as if the ball, an indestructible Death Star with three finger holes rolling along the finely waxed lanes, holds some steroidal other worldly force. The pins are knocked violently down, the ball returns and everything starts all over again.

Without digging into a statistically futile construction effort to prove a point which needs no fortification, let us just agree that the din of the cancer death dirge hums darkly along as if written by Chopin (Funeral March), Gorecki, (Symphony of Sorrowful Songs), or Britten (War Requiem).

Since the summer I have spoken with two college friends who have been hit with breast cancer, resulting in a double mastectomy for one, breast cancer metastasized to her brain for the other. And another neighbor just a few weeks ago diagnosed. Last summer I held the hand and stroked the forehead of a long time friend who passed away only a few months after her diagnosis of pancreatic cancer. Normally vivacious and full of energy, she whispered “I’m so tired, Mark.” A few days later she was gone.

Being part of the cancer community, and specifically the brain cancer community, is incredibly tragic as those diagnosed, especially ones with stage IV (glioblastoma multiforme) and even more particularly, children with brain cancer, have a very poor prognosis. It’s the children that make one freeze. Pediatric cancer is the leading cause of death by disease among children. This is where the gloves really come off.

We lost another brave child just recently, Gabriella Miller. She was only ten. There has been an inexplicable rise in childhood cancers, with leukemia and brain cancer being the most lethal. Something is very wrong.

Gabriella’s message and story

But with every storm comes hope for change. Last week I had the moving joy of sharing and celebrating the achievements of another brave child, Madeleine Baet, of Manassas, Virginia, who, along with her family, has joined the fierce army to slay the cancer dragon. There is Anya Zvorsky of New Cumberland, PA.  And so many more. As difficult as these videos below and above can be for some to watch, I urge you to do so.

My daughters have also jumped in to join the fight, supporting efforts to find cures for cancer and helping me get through each day with love (and patience). This winter Hannah will be climbing Kilimanjaro as part of a fundraising effort on behalf of the Norris Cotton Cancer Center at Dartmouth-Hitchcock.

And then there is BethAnn Telford of Team BT who has dedicated everything to and for the children. A brain cancer survivor herself, she is an inspiration and has inspired me to look beyond my own predicament to help others. The children don’t even have a chance. Working for Accelerate Brain Cancer Cure has been a gift. That said, our CEO Max Wallace often shares that our ultimate goal is to be out of business: when we cure brain cancer.

“As devastating as it is to be afflicted with brain cancer, it is heartbreaking to see an innocent young child have to go through the same pain and suffering. This is why I fight hardest to raise awareness for pediatric cancer, especially brain cancer.” – BethAnn Telford, 8-year Warrior

HOPE. LOVE. CHANGE.

Children’s Hospital at Dartmouth-Hitchcock video- 2.5m+hits

Daughters Hannah and Libby with friend, vintage hand-set bowling alley, Rohmann’s Inn, Shohola, PA 2008

 

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“the ability to just sit there…that’s being a person” LCK

Hafiz rendering - Daniel Ladinsky scaredbee.com cards by Pamela Zagarenski

Hafiz rendering – Daniel Ladinsky
image by Pamela Zagarenski scaredbee.com

As I push through to my upcoming third blast of chemotherapy, three things aligned for me recently: the card, featured above (my daughter Libby chose at a gift shop), the video below from Conan O’Brien’s show featuring comedian Louis C.K. in a terrific rant against cellphones, musings on sadness, nihilism, just “being” and life in general:

and a recent experience in first-time ever yoga classes.

As a child, when we took road trips, either to upstate New York to visit grandma or to Kentucky or Maryland to visit aunts, uncles and cousins, my sister and I would sprawl out in the back seat of our massive brown Chrysler Newport and just lie down, staring up out through the large windows at the power lines as we sailed along in our massive boat. We were left to read, nap, play auto bingo, color in coloring books or just simply to daydream (I would later recall long hours sitting in the back of this same car as we waited for what seemed like an eternity for gas during the gas crisis). I am sure we had a fight or two, especially if either of us crossed that imaginary border between the seats. Our visual entertainment was whatever was outside the window.  Music was limited to scratchy FM radio.

The beauty of it all was that there were no LCD TV’s in the car, no iPads, gameboys, smartphones, or even iPods. The windows were our “screen.” Our imaginations the CPU. Today, shutting this out, down or off is a challenge for us all. Even pumping gas one is now assaulted by the cacophony and visual headache of twenty-four hour marketing. Screens on the gas pumps? At the checkout counter in grocery stores? Please BE QUIET!

Everything is just so damned loud. I am sure having multiple craniotomies and now chemotherapy, resulting in the infamous affliction of “chemo-brain” (a double whammy since the chemo itself is for my brain) has only enhanced my sensitivity to this unpleasant aural riot.

I recently attended two yoga classes different in methodology and resulting in two entirely different reactions.  I knew little beyond the fact that there are many different practices and that many friends do Bikram Yoga,  also known as hot yoga.

The first one, led by an experienced instructor who was very kind and patient, was a bit of a crushing blow.  Many things conspired against me. My usual course of daily headaches were already starting before heading in, my two torn rotator cuffs did not take well to some of the more physically intense poses and I was intimidated by the regulars with their yoga appropriate yoga mats/pants/tops etc. I bailed. This dude’s body would not abide.

The second session, at a different location with a different guide, was a blessed event. A young woman had just started her practice nearby after having moved up here from Georgia with her husband and I had seen her poster on a community bulletin board.  Set in a lush field, the yoga was held inside the very spiritually soothing space of a yurt. Wood, canvas, a skylight and candles. She helped me breathe. Deep breaths. After the session, I had never felt better. I felt alive, enriched, awake and calm.

The alignment of Hafiz rumination, Louis C.K. and Yoga created a welcome triad of moments in time that only help me put one foot in front of the other, thank the sunrise and focus on the gifts life offers when one has been given a diagnosis such as brain cancer. A pilgrimage to be taken within the mind, body and soul.

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“It became necessary to destroy the town in order to save it”

‘It became necessary to destroy the town to save it’, a United States major said today. He was talking about the decision by allied commanders to bomb and shell the town regardless of civilian casualties, to rout the Vietcong.

(Wikipedia) A famous quote from the Vietnam War was a statement attributed to an unnamed U.S. officer by AP correspondent Peter Arnett in his writing about Bến Tre city on 7 February 1968.

OK. The gloves are off. I am about to willingly kick the crap out of my body in order to save it.  Healthy cells as well as the mutated ones will be sacrificed. I am home after my fifth brain surgery in which they inserted a shunt to drain the pressurized buildup of what the doctors called “sludge,” a not-to-be-enjoyed concoction of cerebral spinal fluid, dead cancer cells and active cells both cancerous and non. I can actually feel the tube which snakes its way from the back of my head into my abdomen. Wow.

VP_Shunt_Final

Intravenous chemotherapy will be the next mountain to climb as they are recommending a combined therapy of carboplatin and bevacizumab, widely known as Avastin, a drug which slows the growth of new blood vessels the monster cancer cells need to feed themselves. Microcellular vampires!

A quick glance at the side effects of carboplatin, a part of the family of alkylating agents first discovered to have cytotoxic effects after the use of mustard gas in WWI, appears to be no picnic. I continue to try to push the evilness of this disease over the cliff and look to the good. A news junkie, I am finding it more difficult than in the past to absorb the daily tragedies of murder and mayhem and instead seek sources of inspiration and hope. Not that I am about to wallpaper my home with images of unicorns and rainbows, or puppies and kittens (yet), but such a shift in focus certainly lowers my stress level

I have taken to decreasing the din of the day. Buzzers, ringtones, text and calender alerts have been muted or turned way down.  I am, for the first time I can recall, taking the time to just sit. Think.  Meditate.

Funny thing is, my neurosurgeon shared in a visit today that due to the nature and location of my tumor,  it will be important for friends and family to keep track of any overt or subtle changes in my demeanor as those with my disease in a similar location of the brain often become unaware of changes in their own personality or temperament. He shared that one patient had been found sitting on the couch in his home unaware that he had been doing so for ten hours. It should be thus painfully ironic because sitting for any length of time has never been a skill I mastered.

  • Hope and inspiration is not hard to find. Friendships, family, community, tales of courage, struggle. Art, music, nature.

    When I am really, deeply down and out, there are moments I pull from the past which to this day leave me with profound emotion and lift me up again. Moses Jaenson’s cover of R. Kelly’s “I Believe I Can Fly at his 8th grade grade graduation in 2008 at my children’s former elementary school, The Grammar School in Putney, Vermont,  is one of those moments etched forever in this manner. Thank you Moses.

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“I will take a little bag of prairie dirt. I cannot take the sky.

juned

Pre Op cycst/tumor

Pre Op cycst/tumor

Post-op

Post-op

color

tie-dye brain

broken egg

grandma Bertha’s broken egg

6.26 scan

most recent scan 7.26.2013

I have on one bookshelf a collection of favorite books from the early times of raising Hannah and Libby. Fond memories of the family: Laura, dogs ZuZu and Gracie curled up in bed, the girls squealing with anticipated delight as the familiar story lines unfolded. “Caps! Caps for Sale! Fifty cents a cap! shouted the peddler.” Or the tactile serenity of The Snow Tree. The lupine beauty of Miss Rumphius. The mettle of Katy and the Big Snow. The Wild Party of the Barnyard Dance. Tikki Tikki Tembo. We’re Going On a Bear Hunt. The Christmas Reindeer. And many more. But there is one book, What You Know First which pulls my heart right out front. With simple text and exquisite artwork, the story is as much about going away as it is about going somewhere. It is about loss, fear, wonder, love, family and the longing for a sense of place. It is one of my favorite books and also one of the saddest I know.

what

I am a passionate person. Our best qualities can also be our downfall. I have to be careful lest I get swept up and carried away by the high tide, left to drown in the ocean. Or just simply pulled every which way by rip currents, ultimately dragged over the coral, smashed against the rocks. When I was a child, on the beaches of Avalon, New Jersey I was once swept away by a rip current. I remember seeing my family ashore and realizing that I was being carried off. I yelled to them. They could not hear me. I was getting tired from fighting the water’s force. A calm washed over me. I had this sensation that I was about to let go. Not give up, but to let go. To slip into the deep. And it was OK, This dream state was interrupted when I was rescued by a lifeguard. I was probably eight or nine.

Letting go. The egg. That was grandma Bennett’s egg. She was a china painter. The date was 1972 so I was 5 when she painted it for me. I have other items she painted from her large shop of china, imported from Japan, France, Portugal and her travels around the world. But the egg was special. This and a small mug with a dutch boy with my name she had painted for me. Somehow, over all these years the egg and the mug survived.

I don’t know what to make of omens except to say I suppose we find messages and meaning when and where we need them most. When the egg casually, and, as if by its own force, rolled off of my bureau, I watched in slow motion as it fell and smashed to the wooden floor. I put the pieces in a bag. Rather than try to glue it back, I think I might bury them. Omen? My health continues to challenge, vex, harrass as one might discern from the images indicates a fourth surgery, a cyst now removed and build up of CSF ( cerebral spinal fluid) causing pressure. I will know more soon. The challenge is that because of the uniqueness of the tumor ( grade III anaplastic astrocytoma/ependymoma) there aren’t any clinical trials nor treatment protocol.

Recently I spoke with a woman at a conference who was walking in the same direction as I. Within two minutes she asked if I had taken the Lord Jesus as my Savior after finding out about my cancer. I kindly shared that I had not done so but that I thought that he sounded like a pretty cool guy from what I had heard. She didn’t miss a beat and then asked me where I sought spirituality. I replied that this is a life journey, that I was willing to consider any point of view, that my Quaker schooling and Jewish upbringing informed some but not all of my views and that my place of peace is in nature, on a ski trail, a hiking trail, sleeping beneath the stars or floating in the ocean. Nature was my cathedral.

Expecting her to take me further down the Jesus road, she simply smiled, shared that when we are in the natural world we ARE in the presence of God. That sounded good to me, whatever God means. Finally, as we reached the doors to the conference she shared that she had had open heart surgery and that she felt that this health challenge had been a wake-up call and opportunity for her to get right with the lord. Amen to that sister. Amen to that. LET THE MYSTERY BE! David Byrne and Natalie Merchant

http://www.youtube.com/watch?v=0MfW9zTT-e4

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Embarkation

riders on the storm

“‘Expose yourself to your deepest fear; after that, fear has no power, and the fear of freedom shrinks and vanishes. You are free.” – Jim Morrison

It feels a bit odd to quote The Lizard King but with the recent passing of The Doors keyboardist Ray Manczerak, I have been spinning some Doors as of late. Jim was indeed a poet.

There is a profound empowerment in feeling powerless once fear is shed. The letting go.

What matters most isn’t matter itself. We are all mortal beings and no more important than the spider crawling quietly in the corner of the shower. We are all squashable.

Our complex relationship with Mother Nature is borne of this dichotomy and the very realness that, in the end, Mother Nature will always prevail.

Floods, tornadoes, earthquakes, hurricanes come and go. They steal lives, destroy our homes, and while we know they will come again, we rebuild. But in the end, Mother Nature always prevails.

Genetically manipulate our food supply? Mother Nature will find a way to circumvent this and wreak havoc with our attempt to quite literally reshape living organisms.

And what of disease? Most specifically cancer? We have indeed been able to change the course of history, save untold lives and eradicate many lethal diseases. But again, we remain fragile vulnerable beings and Mother Nature finds a way to remind us we are but mere mortals.

What I am learning about cancer has continued to rock my world as we enter a new era. One of the most promising developments is that we are learning not to fight with the forces of nature (think of the mayhem hewn by our creation of The Dust Bowl with shortsighted farming practices combined with an unfortunate series of weather events) but to work with nature in partnership to alter the course of the genetic mutations which cause cancer in the first place using the body’s own natural defense mechanisms. After all, Cancer is us.

In the meantime I prepare for surgery #4 to remove a growing cyst and more tumor growth as the chemotherapy was not taking.

There are some intriguing options we continue to explore and will know more after tomorrow.

I remain focused and strong – perhaps even more so after reflection upon all things natural and powerful. Mother Nature fill my heart.

“Born a poor young country boy
Mother Nature’s son
All day long I’m sitting singing songs for everyone.

Sit beside a mountain stream
See her waters rise
Listen to the pretty sound of music as she flies.

Find me in my field of grass
Mother Nature’s son
Swaying daises sing a lazy song beneath the sun.

Mother Nature’s son.” – The Beatles

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