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!


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

  1. Mark, I found your blog by searching for Burlington VT and you had me in stitches with the bakery story (and hearing your grandmother’s voice LOL). Reading about your journey with brain cancer induces me to share that I had a secondhand experience with brain cancer also. Although I lost my husband to cancer, he survived over 10 years of what we had been told was a 3-5 year prognosis. Treatments have improved so much since then. Continue to ask lots of questions and include asking what the short and long term effects of any treatment are.

  2. Steve Fortier says:

    Hi Mark. Somehow, I missed this post coming into my inbox. I am so glad I found it tonight. Love Modest Mouse. Saw them a few years ago, with lots of Walpole teens, at the Download Festival at what old guys like you and me would know as the Tweeter Center (can’t keep up with the revolving door of corporate sponsors of the place). They were tight and fun. 90% of us were in the “lawn section” when they came on… most of the seats up front were empty. So, Isaac told everyone to come up front. Sean and his friends started hopping chairs to get down there. I wasn’t far behind. Great show.

    Anyway, far more importantly, I wanted to thank you again for your sharing your stories. You are an amazing writer. I hope that this blog is turned into your first book and that others will follow after that. Your writing is magical.

    Rock on,
    Steve

  3. Tammy says:

    I could picture you as Lucy, but rolls instead of chocolates! http://www.youtube.com/watch?v=8NPzLBSBzPI&feature=related

  4. Dani says:

    Hi Mark. Another inspiring post. Glad you got to go to MD Anderson. We are grappling with that decision ourselves. We have excellent care from our local center, but it certainly is not known for cutting edge treatment of brain cancer. Like you, I’ve delved into researching as much as humanly possible on the topic, and like you, the words “recurrent” and “incurable” resound. The news on this topic is downright deflating, so I have sidelined my efforts to more rewarding pursuits. I’m hesitant to thrash around when panicked, so we have centered our efforts on squeezing the most out of every minute closer to home with those we love and enjoy. To us, that was a guaranteed “win.” Traveling to far reaches to hear the same conclusion would have been stressful to physically do, and disappointing when the alternatives did not budge the prognosis.
    Of course, like you, I’m scanning the headlines for successes. To date, I have found none. That said, there are still that tiny few that defy the odds and live many years with these diseases. So, for now, aim to be one of those. I’ll continue to hope for a cure. Thanks for another great post!

  5. Barbara says:

    you are doing great work… love the quote “raindrops fill lakes”… xo

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