“One thing’s for sure, we’re all gonna be a lot thinner!”- Han Solo

Drum sounds rise on the air,
and with them, my heart.
A voice inside the beat says,
I know you are tired,
but come.
This is the way.

- Rumi

Lately I have been thinking about my days in terms of the trash compactor in Star Wars in which Princess Leia, Chewbacca, Han Solo and Luke are nearly crushed to death as they try to escape enemy fire from stormtroopers while aboard Death Star I. The walls of time, during moments which often cause my knees to buckle, sometimes feel as if they are inching forward in a manner unstoppable. And for you Star Wars aficionados, you may recall Luke being dragged under the sewage and detritus by a large reptilian “Dianoga.” It is an easily drawn metaphor to argue this beast is the cancer. Will someone please hand me a light-saber?

The third craniotomy, the term alone has a medieval gruesomeness to it, went exceptionally well despite the tumor having spread towards the superior saggital sinus, the central outflow for blood in the brain as it circulates through the entire body. Dr. Cahill felt confident that he resected the new tumor growth successfully. And I now have an updated diagnosis of “mixed glioma” consisting of a fine blend of ependymal and astrocytic tumor cells. Well isn’t that just a fine picnic?!

I am about to begin my second round of chemotherapy, Temodar. It’ll be five days on, twenty-three days off for a year. The medicine ultimately exits the body in twenty-four hours. I just learned my dosage will also increase. With the first course, I experienced some fatigue, a burning sensation throughout my body which eventually dissipated, and some discomfort from the anti-nausea medication. These are cytotoxic drugs after all, so of course there will be some effect. I even think the packaging warns against handling the pills and avoiding contact with the skin. I can only imagine the internal effect these scientific poisons have. Mind you, Temodar is only one of a very few FDA approved drugs for brain cancer.

I found this wildly bizarre and amusing gem created by a fellow brain cancer comrade, Alex Moore, which recalls some very distant memories of cowering behind the couch in my parent’s simulated woodgrain paneled basement watching Ultraman. It also reminds me of a favorite Beastie Boys video, Intergalactic, inspired by the same genre of Japanese Tokusatsu television. (One Beastie, Adam Yauch, died last May of salivary gland cancer at 47 as did a dear acquaintance only a few weeks ago)

Ultraman

“A million ancient bees began to sting our knees.” – Regina Spektor

Most irritating and sometimes frightening, has been seizure activity and the “aura” effect on my left side. Keyboarding can be a cumbersome task especially if fatigued, but most of all I worry when the seizures are more intense. It starts with a sensation of an attack of bees, starting with my left foot, (not ironically one of my favorite films) traveling up my leg and on two occasions, up the left side of my head. All I can say then is “please, please no, not now.”

Eventually the activity ends and my body calms down but, given the electrical storm occurring within, I am left exhausted. Imagine a torture device involving a car battery and cables attached to your legs. My sympathy for those who have suffered strokes, victims of accidents, those with cerebral palsy and other neurological symptoms which disallow control of their own bodies has been amplified as never before. I do know these symptoms, now better managed with Depakote, 1,000 mg in am, 1,500 mg in pm, are often precipitated by fatigue and/or stress. I can also feel them coming on so at least I can batten down the hatches and prepare for the neural overload.

But like our friends in the trash compactor, I try to find new ways of slowing the progress of this disease. Anything to hold the walls back from closing in. If not in body then at least in soul and spirit. I realize I need to dance, write, bike, swim, cook, fish, sing, skip, laugh… more.

There is much to be thankful for and much hope as well – in the words of one compassionate, brilliant brain cancer doctor, Henry Friedman at Duke shared in an interview with Dr. Sanjay Gupta, “I don’t want to see my patients die with dignity, I want to see them live with dignity!”

Lately I have been relishing the success of working for Accelerate Brain Cancer Cure, the joy of witnessing Hannah and Libby evolve and mature, spending time with Barb, friends and family, and digging deep down into the spiritual core of not only what it means to live but what it means to die. This is often heavy lifting, but I am an eternal optimist and at the end of the day I just want to dance. Turn up the damned music!

sugaring time

Fisher’s Sugarhouse, Rockingham, Vermont

I walked into the intimate, mystical confines of Fisher’s sugar house, maple steam hanging in the air, a sweet sauna. From old low timbers of the old barn dripped the dampness of spring. The Fisher family and friends gathered, a springtime reunion, some with Vermont accents as thick as the spring mud, Vermont’s fifth season. Memories flowed, bringing quiet tears, of carrying my then-toddler daughters in my arms to inhale the maple, teaching them the ancient ways carried over from Native populations long passed. “Forty gallons of sap makes one gallon of syrup Daddy!” they would exclaim with delight. Pee Wee, a stout firefighter with a horseshoe mustache holding court over the sample bucket, passed around tiny paper cups of fresh, warm syrup. Heavenly sweetness slipped down our throats. Arnie, a multi-generation farmer exclaimed without irony that he was a diabetic and thus could not even enjoy the fruits of his labor, at least not to eat. Another relative stoked the fire, while he skimmed the froth off the top as the sap boiled down.

This moment captured last weekend filled my heart with great elation. I contemplated my own mortality, my life here on this funny little planet. Cancer does that to you with a steady drumbeat. Those moments when you are frozen in your tracks and realize the beauty in things great and small. I had no reason to turn up Pleasant Valley Road, a beautiful backstretch between Rockingham and Saxtons River, but something pulled me there. I saw the cars, the smoke rising from the rusted chimney and I knew. It was a Vermont homecoming.

The art of making maple syrup, like life itself, when lived to its fullest, is about boiling something down to its sweetest essence. It is a science, a craft and then there is that something else: faith and hope. Faith and hope that when it is all done, all that we have left is the sweetness.

Arnie Fisher

histologic nebulousness evades category

Spring is nature’s way of saying, “Let’s party! – Robin Williams

The brain is hot these days. The continued evolution of our own understanding of the most mysterious and complex of all organs rolls along at a rapid pace. The convergence of biology, chemistry, technology and other realms of knowledge as it relates to the gray and white matter inside our skull rages like so many rivers combining into a (bit?) torrent of information.

In a recent New York Times article there was the news that “The Obama administration is planning a decade-long scientific effort to examine the workings of the human brain and build a comprehensive map of its activity, seeking to do for the brain what the Human Genome Project did for genetics.”

Beneath the twenty-two bones and three membranes lies an organ, the largest of any mammal related to body size, weighing on average around three pounds, with 100 million miles of blood vessels. 100 billion neurons (the gray matter) are organized into 100 trillion total connections. The white matter is made up of dendrons and axons, the network needed for sending signals. The brain is not coiled but folded and if laid out flat would cover about 2.8 square feet. The brain is the fattest organ in the body and is 75% water. I did not know this when I was eating sauteed goat brain in Puerto Rico many moons ago. Yum.

How funny, and not, necessarily, ha ha funny, that I had not thought much of the brain, my brain, or any one else’s for that matter before “this.” One could argue I had not done much thinking to begin with, at least on some level as I bounced and careened through life, a mostly-fun roller coaster ride with rickety wooden Coney-Island rails. Until now. There is nothing like a little humility of ill-health to slap your soul into orbit. And all I can come up with for the moment is “holy smokes I am a lucky man.” It has been a week since surgery and I am up and about albeit some pretty good bouts of headaches and some unsteadiness. But why complain? What would be the point? Barb, my parents, daughters, family, friends and the incredible team at Massachusetts General Hospital were the wind in my sails once again. Perhaps I can sail with a full wind for a while before the next storm.

After brain surgery #3 in two years time, I was mobile two days later, giving the nurses a hard time by pretending to drink from my bedside urinal containing not what was intended but instead apple juice.  Unlike several on the Neurosurgical ICU ward, I could talk, see, hear, touch and taste.

After the surgery some of the leading pathologists analyzed the tissue which will be further studied at a genetic level.  Some notes:

“Findings consistent with recurring glioma but specific tumor type elusive although trending towards mixed ependymoma/astrcocytic as it would be unusual for ependymoma alone to recur so quickly.”

I will know more when I see my neuro-oncologist next week and discuss results from mutation testing- I believe he will provide a menu of options, including chemotherapy: temozolomide,  Avastin, etc.. We shall see.

In the meantime I am moving towards (but not completely) a modified Atkins/Ketogenic diet. Life is indeed too short to not enjoy great food but life indeed will be shorter if I enjoy some of the foods with more indulgence than necessary. Incidentally, a bottle of red wine has fewer carbohydrates than an apple, as hard as this is to believe. Go Willamette Valley Pinot! Fresh feeling.

The world is mud-luscious and puddle-wonderful. – E.E. Cummings

A little Madness in the Spring Is wholesome even for the King. – Emily Dickinson

Addendum: For a great recent post by colleague/fellow survivor Liz Salmi at LizArmy

“Music is the language of the spirit. It opens the secret of life bringing peace, abolishing strife.”― Kahlil Gibran

Thank you Sam, Bela, Jerry, et al for lifting my spirits whenever I hear this song…it’s 12 minutes of bliss.

The journey continues. Perhaps Michael Corleone said it best:

What sobriquet shall I find to assign to the latest evolution of that which grows within? Only ones with nasty epithets come to mind. That which shall not be named. Acronyms work well. SFC. Stupid f*%#ing cancer. I must amuse myself with what one fellow cancer comrade refers to as his “personal hyperplasia.” Alas Cancer is indeed us. Isn’t battling cancer really a twisted war against one’s self?

Those “bad” cells, haven’t they been there all along like some deep-sea luminescent angler fish floating in disguise beneath coral waiting to spring out and swallow victims whole? My cancer, as far as we can discern, like most cancers, did not come from “the outside.” A genetic mutation either inherited, or created at the very beginning of my cellular formation.

I do know that these mutants lack the normal mechanism, or “switch” which triggers apoptosis, natural cell death and that angiogenesis, the growth of new blood vessels, can create a problem if there is too much of it, as cancer cells crave new blood sources to grow as much as they crave sugar. What is in my databank arsenal? Bad: stress, fatigue, sugar, processed foods including meats, simple carbs. Good: curcemin, broccoli, green tea, leafy greens, exercise, the usual course of action for healthy living multiplied.

So the good doctors now believe, given the latest MRI’s, that the tumor has returned. It is possible that what is appearing is necrosis of cell tissue from radiation but things are looking like tumor. They are also of the belief that I may very well have what is known as a grade III mixed glioma, a diabolical blend of two types of rare brain cancers: ependymoma as originally believed, and astrocytoma. This makes things a bit more…complicated and depending upon the outcome of my next surgery, intended to be a biopsy on March 15th, will determine the next course of action. I have already received the maximum radiation treatment possible. Chemotherapeutics might include Avastin or Temodar.

My experience at Dartmouth was exceptional, what with two successful surgeries, fine patient care, a supportive community and one of the most sensitive, caring physicians I have ever known, Dr. Camilo Fadul. Once again I hope to ride this summer in The Prouty for the Friends of Norris Cotton Cancer Center.

But as my condition becomes more complex and given my new understanding and ties to the brain cancer universe thanks to my work with Accelerate Brain Cancer Cure, I am now under the care of some of the most experienced physicians in their field at Massachusetts General Hospital.

So like a boxer in the ring, I may have been knocked down again, but rise again I must and rise again I have. After a week of skiing, ice climbing and horseback riding in Colorado with my younger daughter Libby, and another weekend skiing coming up with the entire family, I am renewed and ready for the next chapter. I feel strong and empowered.

It’s perplexing to my therapist who has asked me on several occasions why I don’t talk about my cancer very often. I tell him “what is there to discuss? I have brain cancer.” If it was only so simple.

I am in therapy, more so I believe, to dig deeper into some of the mysteries about my life lived thus far and how I can improve myself with whatever time I have left. It is a good time to get my house in order for Barb, my family and friends and work to right the wrongs I have done to those closest to me and heal.

And when I am most down, when I crumble, is when I think of the love and support of Barb, my family and friends which at the same time lifts me up.

It is within the space of the quiet times where I experience the most grief and fear intertwined with a rising sense of hope and love. Listening to music or skiing the quiet untracked hidden trails of northern New England help cleanse and renew. And spring is en route.

“Before you love, Learn to run through the snow, Leaving no footprint. “-Turkish Proverb

John Hartford: one of my faves

The Snow Man

by Wallace Stevens

One must have a mind of winter
To regard the frost and the boughs
Of the pine-trees crusted with snow;

And have been cold a long time
To behold the junipers shagged with ice,
The spruces rough in the distant glitter

Of the January sun; and not to think
Of any misery in the sound of the wind,
In the sound of a few leaves,

Which is the sound of the land
Full of the same wind
That is blowing in the same bare place

For the listener, who listens in the snow,
And, nothing himself, beholds
Nothing that is not there and the nothing that is.

-

“If I live the life I’m given, I won’t be scared to die.” Avett Brothers

“I don’t think any of us even knew what we were doing here and why we decided to come. I mean, we were all having a blast and all, it was probably the best day of some peoples lives. Maybe even mine, but I can’t really remember which was the best day of my life or if I’ve even had it yet.

Do we know when it is when it’s happening, or just looking back on it? I don’t really want to have the best day of my life though because then I’ll know that that was it, nothing will ever be better than that, and now the moment’s gone. I guess I would just get all depressed after it happened. I don’t know really, but I didn’t get depressed after this day, I just couldn’t stop thinking about it and smiling.”

- My daughter, Elizabeth “Libby” Green, age 13, on participating in the Annual Coney Island New Year’s Day Polar Bear Swim, January 1, 2012

It has been some time since I have jotted out musings vis-à-vis this funny sounding medium called a “blog.” The word to me sounds onomatopoeic. Perhaps the sound of a frog when it has indigestion after slipping too many dragonflies into its stomach. Or rather, the name of a mythical creature from the swamp, emerging from the murky deep and devours small children with a gaping mouth and massive drooling bicuspids?

In a promise to myself to keep putting pen to paper, or rather applying my awkward yet adaptive style of hunting and pecking with both forefingers (I never learned to type and my handwriting is horrid) here I am. Oh yes, the book. Yes. The book. The. Book. Yes. So much to say. Stories to share.

What has gripped my thoughts of late with talon-like efficacy among the many torrential downpours of emotion, has been a very strange and unsettling convergence of recent events involving the ongoing aftershocks of living with brain cancer, the celebration of my great-aunt Sarah Willdorf’s 100^th birthday in Stamford, Connecticut, and the mind-numbing massacre in neighboring Sandy Hook, Connecticut.

Lives threatened, lives extended beyond the norm and lives stolen far too soon to even comprehend. Tucked within these events I cannot help but seek, but what? Meaning? Truth? Or is all just what is? I think Libby was writing of the same question. Darkness and light. Tears and laughter. Love and pain. Just what are we doing here and is this best we can be?

“It’s a fool who looks for logic in the chambers of the human heart.” – Ulysses Everett McGill, O Brother Where Art Thou

I feel as if I am about to embark on a very important journey. I cannot explain anything more. It’s just a feeling. I know it is sparked by some new fires being lit in my heart, mind, body and soul. I sense a nascent enlightenment, catalyzed by years of self-inflicted pain which I must shed. The tracks of my ice skates are finally cracking the fragile surface: risk evolving into recklessness, caution to the wind, carefree-ness translating sliding into impulsiveness. I do not seek perfection in this journey, only progress. If our best qualities are also our worst, I seek to make the best better and the worst fall away and slip beneath the ice into the… deep. icy. cold. blue. waters.

A friend, also a cancer survivor, shared that cancer does not make whatever challenges you had going on in your life disappear. To the contrary, whatever you had going on in your “pre-cancer-state” eventually bubbles to the surface, like an underground geyser, often with more intensity. Depending what those things are, this can be either blindingly beautiful or catastrophically upending. And geysers are hot and powerful. Scalding steam thrust from the earth’s core. A violent earthly purge.

I am unable to reference much in the world of popular film, art, music and literature about cancer. There is surprisingly little given the numbers of those with the disease. Sontag, Hitchens and Solzhenitsyn of course are a few which come to mind. There is a series called the “Big C” I have not seen and the film 50/50 which was “meh.” The scene of Elizabeth dying of cancer, George Clooney’s wife in The Descendants, was more irritating than moving because I resented my emotions being manipulated, the camera seemed to linger over her dying body much too long. The Cancer Ward, Illness as Metaphor and Mortality are good starts anyway.

The sublimely executed Emperor of All Maladies: A Biography of Cancer by Dr. Siddartha Mukherjee is a must-read. And, sadly, but gratefully, there are the thousands upon thousands with cancer or who have endured the loss of a loved one, who write, paint, draw, sing, play, sculpt, sew, cook, and otherwise express themselves as an outlet not only for their creativity but as a way to process pain and fear. All that anger, fear and sadness must be managed and translated into something good, if possible, in some fashion.

Others are inclined towards the physical: participating in competitions, running, walking, hiking, bicycling, swimming, etc. towards a cure relishing in the esprit de corps and camaraderie. Or just for the sake of exercising, no cause attached. Some take part in the political process, lobbying, writing letters, visiting their representatives, working tirelessly to press the cause and seek more funding and more research. And many chose to endure their cancer quietly, privately. Each follows the path that is right for them.

But in popular culture, certainly the day-to-day coverage, little is shared about the havoc the blanket of cancer covers. A cyclone of financial, physical, emotional, sexual, spiritual and psychological mayhem. Thank goodness there is a dearth. A reality TV show about cancer would be dreadful. There is no such thing as reality TV. The whole notion is oxymoronic. Reality TV is not real, it’s television. Pixels carefully manipulated for maximum effect with no regard for anyone or anything but the voyeuristic, salacious and often profoundly sad, exploitative nature of such shows. And of course, ratings and revenue.

Stories of heroism and courageousness are another matter and are important for cancer’s storyline. They offer hope, inspiration and faith. That I will take. But they often belie the struggles behind the scenes. It’s sort of like the ironic lie of a family photo album. When was the last time you saw a family photo album where all the pictures were of the unhappy times? What if you had an album capturing every family blow-up, each domestic argument? The tantrums. The accidents. The foot in the wall. The spaghetti tossed to the ceiling. The burned dinners. That would not be very much fun now would it? (actually, it might be) A real cancer story would be difficult to achieve in a thirty-minute segment with commercial breaks. Thank goodness for public television and independent film.

—–

I have left The Putney School, a place very dear to me, but most happily have joined the terrific team at Accelerate Brain Cancer Cure, based in Washington, D.C. I can now honestly say that I have quite literally dedicated my life to the cause of finding treatments and cures for brain cancer, currently an incurable disease with very few options. The moving story behind this small but effective organization can be found here. I do hope to carry Dan Case’s legacy forward and beyond as I spend part of my time working from home in New England and part of my time evangelically pursuing avenues of funding for the cause. I have miles to go before I sleep!

—-

Living with cancer is like:

Awaiting Jack Nicholson as Jack Torrence in The Shining to smash his way through your door with a fireman’s axe screaming “Heeeer’s Johnny!”

Being served a birthday cake with trick candles that don’t ever blow out.

Swimming in shark infested waters.

Having a hornets nest nearby at all times.

That said, when timed get tough, I think of what Teddy Roosevelt would say: “Bully!”

Or perhaps Winston Churchill: “The pessimist sees the problems in every opportunity. Whereas the optimist sees the opportunity in every problem” “Never, ever, ever, give up.”

I just spent a lovely holiday break with my daughters in Quebec, nordic skiing at Mount Sainte Anne and celebrating New Year’s in Quebec City. Nothing like being surrounded by an historic fortress with French-Canadian folk music blaring from a frigid stage and everyone as happy as can be. The Quebecois are fun-loving people no matter what the temperature.

At the ski center, gliding along a single-track trail with nothing but a canopy of snow-covered evergreens above and the soft snow under my skis, I often paused to take in the cold air in as deeply as I could. My heart, mind, body and soul were one. I was happy. I was at peace.

The journey has already begun but I have new mountains to climb, trails to ski and many rivers to cross. Happy 2013!

Great Aunt Sarah Willdorf at 100

Willard!

Great Uncle Morris and Great Aunt Sarah at their camera shop on Madison Avenue. Jacqueline Kennedy Onassis was one of their favorite regular customers

Nutrcracker Ballet in Boston

Quebec w Eric Aho

Chalet Morency

Bliss. Photo by Libby

Photo by Libby

Warming hut. Photo by Libby

Timers have a different meaning now

Vieux-Québec w Libby, Roo and Hannah

Night View from the Boardwalk overlooking the Saint Lawrence

Thank you Wes

Thank you Wes, Jill, Gary and Rick. Click here for a great blog from a great man with wonderful friends. Or copy and paste: http://www.mwestonchapman.com/mark-green-on-mt-moosilauke-with-the-kilimanjaro-team/

Coming up on one-year anniversary of end of radiation 11/11/11… blog to follow…debate time now!

 

Wangari Maathi

Karmatube