NOW: 12/26/2012 CANARIES IN THE MINE

CANARIES IN THE MINE
Each of these entries draws from a place of struggle as well as from attitudes of defiance and hopefulness and optimism, a strong rebel strain. Eileen calls me the "Bad Boy." I smile at that.
I awake early usually, this morning at 2:30 a.m., concerned about the pending winter storm, worried about a potential power failure in subfreezing temperatures, now at 15 degrees Fahrenheit. I felt a hives attack coming on, too, so took an antihistamine.
The hives attacks have been radically frequent since this round of Lupron injections, and I noted this to my urologist during the testy exchange we had when I questioned the need to continue these since my latest PSA reading showed the decrease mentioned earlier, from a rising 2.3 to a low 0.17, considered a level that indicates remission from prostate cancer.
Other things on my mind include at the moment the intermittent flow of well water that comes through our new plumbing to the sink and toilet I just installed and the previously installed shower and hot water heater in our rustic rural cabin. I understand the possible causes from this erratic flow but fixing them involves help from the contractor who installed the plumbing itself as well as the hot water heater.
We get by with this problem, though. It's a matter of patience, of waiting for the flow to fill what needs to be filled. Our first shower here with the new plumbing came in spurts of fortunately hot water. We understand the luxury, too, both from our own lives and our human-rights humanitarian travels. The same is true with the pending storm. The cabin is protection from the storm, whatever the plumbing problem.
What lacks though in this industrialized and technologically astute culture is adequate protection from the toxins and contaminants in our environment and food supply, some that have a causal or an associated relationship with cancer. And speaking of water and plumbing, the natural gas pipelines that run through this region transmit shale gas, the subterranean supply broken loose by horizontal hydraulic fracturing whose drills need a high-volume supply of toxins and truck-transported water that are later left in supposedly safely lined ponds. Yet this "fracking" blasts through water tables too.
There's no question the contaminants filter into these supplies. Where's the protection?
The points for me are these: What is the relationship between the contaminants injected and spewed into our habitats and prostate cancer?
Are we who have been afflicted by this cancer and others the canaries in the mine?

(draft version)

NOW: CHRISTMAS DAY 2012 - 'CANCER HOLE'

NOW: Christmas Day at our upstate New York cabin: 2012
Snow in a small field, winter storm warning for this area along the northeastern border with Pennsylvania, animal tracks and trees with light snow on their limbs, Eileen and our two rescued dogs and cats temporarily inhabiting a cabin we hope to be living in regularly, when is not certain, probably still a few years off.
Our cabin is a healing place for both of us, the land too, which has been ours to tend for 23 years. The cabin is the latest iteration of dwellings here, itself now in its second stage, a 16-foot by 16-foot extension with a sleeping loft added to a 12-foot by 24-foot converted Amish built shed. At first, it was a tent, then an ancient immobile camper trailer followed by an equally ancient and virtually immobile motor home, both towed away when they became uninhabitable.
Then we put in the shed/cabin and this past year the extension which at last for us here in this space has a sink with running water and a toilet that flushes, both I installed in the last two days.
We've never lived here full time. Jobs drew us increasingly further away over the last 23 years, initially in upstate New York, then to Michigan and Tennessee, where we currently "live" and Eileen works. But this space, terrain, five-acre woodland bluestone-shaled mountaintop place, is the "Heartland."
And when I write of healing, it is about heart, and mind, spirit, soul and body, about love. As a goal to rid me of cancer (not the treatment goal of remission but mine), our cabin is a guide. It is closer, much closer to family, to the land where we have a rootedness unlike any other. All the aspects of what I can imagine this self to be, have found their home here, home with Eileen, and home at last in a single space after a lifetime of unrootedness and uprootedness.
For a short time this year, the Williams Constitution natural gas pipeline corporation threatened to tear into our Heartland with a swath of ripped and blasted 160-foot right-of-way for a pipeline. I wrote the Federal Energy Commission overseeing the proposed pipeline that the blasting and burrowing for its route would certainly destroy our 250-foot deep water well and the soon-built septic system. I enclosed engineer's maps enclosed, to show the scale and proximity. I'm not sure whether this became a factor, but the pipeline company rerouted its path to an alternate map line over apparently receptive larger spacious tracts to the east.
But why not equally expensive efforts for alternative energy sources - the sun, the wind? Too much reconfiguration of the energy-industrial complex; of the profit machine; of the so-called national goal to become energy-independent, to in fact be an exporter of energy. I need to explore that more. And shall.
Still, here is Heartand. Place and goal of healing and being healed. Definitely worth striving for. Even awaiting the results of the National Weather Service's winter storm warning.

(draft version, to be built on)

A MONTAGE I PUT TOGETHER - HEMINGWAY AND A FAREWELL

Writer's facts ... and a farewell

PERSPECTIVE ...

Facebook is said to be populated now by a billion users.

The Earth's human cargo is estimated at seven billion people as it speeds around the Sun ...

Hello, vast universe, can you hear us? No ...?

EXCERPT - THE CANCER HOLE - 12/16/12

NOW 12/16/12 Reflection

I'm feeling positive that I'll survive this bout with cancer. It's a sense that comes partly from the knowledge that I'm proactively engaged through diet, exercise, research and attitude. I'm not passively awaiting the next step from the medical community nor giving unquestioning credence to its methods.

There's also an intangible sense about the positive feeling, maybe akin to a "knowing," like a conversation with the body and its immune system, the efforts I've worked on to enhance it through exercise, diet, spinal column improvement and a mental and spiritual effort.

With that said, today is also the grieving and terribly sad day's aftermath from the massacre of 20 schoolchildren, six elementary school staff and the mother of the young mentally ill man who murdered them in Newtown, Connecticut with a semiautomatic assault rifle and killed himself with a pistol.

It seems incongruous to have a positive feeling about my situation following that. Hopefully responsible leaders will again ban the kind of assault weapon the young man used and as well take substantial and rapid steps to provide a far broader mental health care system and insurance coverage needed for such care.

That seems a faint hope given the polarization in government and among the people in this country. It seems faint, too, given what I've grown to understand from my years in journalism and the research I'm undertaking now.

Another twist in this day helped me to engage what I'm going through positively as well. Occasionally I've helped convene a group of churchgoers called "The Seekers" who question the mythology in Christian scripture yet want to yet find something meaningful in its language and faith expressions. To me, the recovery of the language of faith through the language of scripture is difficult because of the near impossibly of verifying the authenticity of what the person Jesus was reported to have said and accomplished. Yet Seeker members are not willing to give up on their faith in a divine presence that is beyond understanding but yet is applicable in creation and their lives. If this is so, then the question is how and to what extent.

I offered several books written by liberation theologians who speak of a God and a Christ who offers a special option for the oppressed, downtrodden, poor, disenfranchised, broken-hearted, who lives in them because of the special option. It is a way they recover the language of scripture to give them hope in their struggle.

We also spoke of what is considered the misuse of this language by preachers, churchgoers and politicians who absurdly claim the murder of the 20 children resulted from the banning of prayer in schools. In fact, it's not banned. What is prohibited are school-sponsored rites to prevent partiality toward one religion over another.

The conversation with this group energized my positive sense about my situation as well.

An afterthought:

The mystery is enigmatic ... an inscrutable that theologians try to name, offer attributes and dogmas for, and claim as their unique religious province ...

Said one theologian to me once: "You cannot appeal to mystery." Me, a theologian, thought: "You cannot name the unnamable." It's a matter of respect for the limits of human understanding.

Yet, I want to assume it has something to do with the grace of the humanitarian impulse that guides human-rights and social-justice efforts, a within that is also beyond.

The Cancer Hole - An Asymmetric Journey

(A draft excerpt)

WRITING AND THE LOGIC MODEL

I have to create. Simple to understand. It's the way I am. I’ve explored this across a range of artistic disciplines for awhile but now I’m down to two, one more accessible and difficult: writing. The other, easier, is photography, but I like to do that casually, as a diversion. Preceding these two I worked eight years in independent film and experimental video. Still, writing is where it’s at essentially and existentially, as it had been professionally in the past.

My output is prolific. But a key outcome is poor. My work hasn't caught on, though I have had a couple of short stories and poems published and self-published short novels since I started again this year. It may never. How does that affect me? If I think of a work in terms of the outcome of catching on, I'm dismayed and often feel the labor isn't worth it. Yet, I'm drawn back to it. Like now, even this way.

Rationally, I'm looking at this at the moment in the context of the logic model: input, activity, output, outcome. I want to explore each of these as they are in their distinctiveness and as they interplay synergistically. Maybe I'll write in an explorative way about this too, likely piecemeal at first: like, what research approaches help a work and how not to avoid due diligence.

Eileen introduced to me to the logic model a few years ago as a method of program evaluation she first encountered at Cornell University which has gained broad use in the nonprofit, academic and for-profit world. It is a praxis model, cyclical, involving resources and needs or goals in one sense, and how to evaluate the effectiveness of what a program sets out to do and what can be put into play to increase its effectiveness, or to decide the program isn’t capable of reaching the intended goal.

In this way, I can look at writing as a program and how I work it. I fully understand there are a multitude of intangibles in terms of outcomes - the publication of a work, the sale of books and so forth - especially given the limited possibilities for publication and a broad acceptance of a work and a writer. But given that, the value in the logic-model approach appears to me to lie also in its three other components: inputs, activities and outputs and how these interplay. In the creative process itself.

CANCER TREATMENT SUSPICIONS

NOW 12/13/12 CANCER TREATMENT SUSPICION (Draft for manuscript)
Each day the suspicion is similar. The hormone treatment I'm receiving via the drug Lupron for cancer is in part a scam. This is not an unreasonable thought. Research noted previously supports it [noted both in my blog and the manuscript I'm writing].
Particularly disturbing are four things: miserable side effects can become long-term effects; the drug doesn't kill prostate cancer but only puts it temporarily into remission; its drug maker has been levied penalties of almost a billion dollars by the US Department of Justice for illegal practices to foster its use by physicians; the cancer cells can thrive and spread again without the testosterone Lupron blocks to put them into remission, a point in which there is no presumed cure.
Yet another deep concern nags at me. Lupron and its alternative Zoladex are huge moneymakers for their two pharmaceutical companies. They have to be given the companies' willingness to consent to enormous DOJ penalties. Why should the companies foster remedies to kill prostate cancer when they can mindlessly profit from extended treatments to put it into remission?
Further, in the medical community, hundreds of urologists and other practitioners have been brought to court for profiting illegally in their use of the drug on patients. Physician, heal thyself, please.
And now I wonder as well what part Lupron really has played in the so-called test indication that cancer cells in me have apparently returned to a remission state. Was a radical change in diet and an increased exercise regimen a key factor?
And I also wonder why my physician insisted on continued 4-month injections with the explanation that they would keep the cancer in remission.
[To be continued] ...

SIFTING THE SHADOWS - THE CANCER HOLE

Draft beginning of a new chapter for "Cancer Hole" -- Sifting the Shadows

Sifting …

I do not like waking up each morning knowing that cancer cells are still in me that have shown they're capable of warding off the current treatment I'm undergoing. Even though the pharmaceutical poison, excuse me, the "remedy" injected into my body, has seemed to reverse their aggression, appearing to put the cancer cells back into remission again.

I do not like waking up each morning knowing that huge profits and illegal practices have been associated with the stuff injected into me at my urologist's office — at a billed cost of almost $3,000 a 4-month shot I should add, for which I shell out a $208 copay. Not to suggest that my urologist is implicated in these practices. The stuff, medically considered to be hormone therapy, is called Lupron. It is designed to shut down testosterone production. Call it “chemical castration.” As mentioned, prostate cancer cells will feed on testosterone.

I do not like knowing, too, that at some point this type treatment could fail, that the cancer cells can become resistant to the hormone therapy and then have their way with me. Technically, the cells become “hormone refractory.” They can grow and spread without testosterone and other androgens. 

What if some of the hundreds of millions in illicit profits mentioned previously had been aimed at cures — is that a legitimate question? Why not kill prostate cancer cells instead of offering “hormone therapy” by testosterone interrupters like Lupron and its competitor Zoladex that allow the cells to still inhabit me? Some natural ingredients like sulphoraphane in broccoli and carvacrol in oregano are undergoing a little bit of research this way.

That's just my personal body. There's the Earth's body and the worldwide human body as well, and the profoundly enormous amount of illicit profits reaped at their expense. 

[Draft interrupted at his point…]

EXCERPT - THE CANCER HOLE - NOW 12/6/12

A draft segment ...

NOW 12/6/12

Early morning, age, stiffness and left hip pain, eyes ache, sinus. Thinking about posture, the day ahead, writing, internet research, cottage cheese and flax seed meal, my coffee, one dog on the rug alongside my chair. The amplification of healing with nutrition and exercise. Big Pharma and its corrupt stake in treating symptoms rather than developing cures, its billion dollar Department of Justice penalties for illegal practices.

Eileen's off to work in the early darkness to United Way to do a 6 a.m. fund-raising campaign presentation, a bit part added to her usual role as director of data, strategic development and 211, roles that include her skill with geographic information systems. Always on overload it appears to me.

With this manuscript, prostate cancer is on my mind too. Even without it. So, the day begins.

I write across platforms, this time starting out in landscape mode in an older Galaxy Tab on the ColorNote app because it's easy to see, then pasting it into Evernote. Later, I'll open it in the Evernote app on my iPhone, copy and paste it in Simplenote, which is integrated with Scrivener, the authoring software on my old MacBook Pro, where this ends up.

I could write it right on the laptop, and do, but I like the feel and slow pace of doing it this way, the Tab in my hands, my thumbs moving across the Thumbs 4 split internal keypad, the Tab resting on a crossed leg. I'm always intrigued by the next best thing in devices, but money is a genuine concern. Modus operandi.

My relationship this way? It's complicated. 

Okay. Dogs out to the yard, back inside, then exercise.
I'm avoiding scouring around to do critical research.
I have no idea whether any of this is interesting.

BIG PHARMA NAILED IN DOJ ANTI-FRAUD PROBE

This is part of my continuing pursuit of material for a manuscript I'm trying to develop about my 11-year experience so far with prostate cancer -- from the U.S. Department of Justice web site -- Other investigations also turned up fraud involving prostate cancer hormone treatment drugs Lupron and Zoladex ...

Huge billion dollar penalties levied under U.S. anti-fraud law enforced by the Department of Justice:

Quote from story:
"Enforcement actions involving the pharmaceutical and medical device industry were the source of some of the largest recoveries this year. The department recovered nearly $2 billion in cases alleging false claims for drugs and medical devices under federally insured health programs and, in addition, returned $745 million to state Medicaid programs. These cases include recoveries from GlaxoSmithKline LLC (GSK) and Merck, Sharp & Dohme (Merck) – two of the three top settlements this year. These recoveries do not include a $561 million False Claims Act settlement with Abbott Laboratories Inc., part of a $1.5 billion global resolution (which will be reflected in FY 2013 numbers)"

http://www.justice.gov/opa/pr/2012/December/12-ag-1439.html

PROSTATE CANCER RATE COMPARED TO BREAST CANCER

PROSTATE CANCER RATE COMPARED TO BREAST CANCER:
   Though men face similar fates from prostate cancer as women do from breast cancer, public awareness and publicity about this similarity appears low. Still, one in six men in the U.S. are expected to be afflicted by prostate cancer in their lifetimes while one in eight women face a similar outcome with breast cancer. 
   The number of annual deaths from each cancer also bear comparison. The American Cancer Society estimated that 33,720 men would die from prostate cancer in 2011. Breast Cancer.org reported that 39,520 women were expected to die from breast cancer the same year. I couldn't find actual statistics for those years. Women have roughly outnumbered men 51 to 49 over the last decade.
   Another point to consider is that men are reported to die at a later age than women from their respective cancers, many of the recent deaths said to be of men born in the 1930s when their birth rate was low. I was born in 1936.
   One intriguing question is why there appears to be less publicity about prostate cancer. One answer, I think, could lie in the relationship between prostate cancer and sexual dysfunction.
   Links below lead to more details regarding this post.

Prostate cancer link:
http://prostatecancerinfolink.net/2011/06/17/acs-projects-33000-prostate-cancer-deaths-in-us-in-2011/

Breast cancer link:
http://www.breastcancer.org/symptoms/understand_bc/statistics

(Draft background segment for a book I'm working on)

FRAUD AND CANCER TREATMENT

FRAUD AND CANCER TREATMENT:

As I investigate medications used for my cancer treatment, I turn up stories of fraudulent drug pricing practices that implicate pharmaceutical companies and physicians, practices that resulted in huge multimillion dollar  fines.

*** (1)From a federal lawsuit about cancer treatment fraud, dated 2001:

TAP Pharmaceutical Products Inc. ("TAP"), a major American pharmaceutical manufacturer, has agreed to pay $875,000,000 to resolve criminal charges and civil liabilities in connection with its fraudulent drug pricing and marketing conduct with regard to Lupron, a drug sold by TAP primarily for treatment of advanced prostate cancer in men. 

*** (2) From a NY Times article June 21, 2003

AstraZeneca Pleads Guilty in Cancer Medicine Scheme

By MELODY PETERSEN

WILMINGTON, Del., June 20 — AstraZeneca , the large pharmaceutical company, pleaded guilty today to a felony charge of health care fraud and agreed to pay $355 million to settle criminal and civil accusations that it engaged in a nationwide scheme to illegally market a prostate cancer drug.

The government said the company's employees had given illegal financial inducements to as many as 400 doctors across the country to persuade them to prescribe the drug, Zoladex. Those inducements included thousands of free samples of Zoladex, worth hundreds of dollars each, which the physicians then billed to Medicare and other federal health care programs, prosecutors said. The company also gave doctors financial grants, paid them as consultants and provided free travel and entertainment, the government said.

The $355 million that AstraZeneca, a British company, agreed to pay is among the largest settlements in a heath care fraud case. Of that amount, about $64 million is a criminal fine. The company will pay about $266 million to the federal government to settle most of the civil accusations. An additional $25 million will go to settle accusations that it defrauded the Medicaid programs, which are partly financed by the states.

(The story develops ...)

CANCER TREATMENT HOLE

   Each day, in the background below ground level, is the hole I repeatedly launch from. Within it, I insist to myself that I want to be a full partner, to write, to learn, to research, to create, to workout, to cook, to maintain what needs to be maintained, to be the activist I am.
   I call it the cancer treatment hole, my struggle to be whole, to climb out once again in the face of physical and emotional fatigue. I defy it, just as I defy the aged state of my 76 years.
   I went through this once before, between 2001 and 2003, so this is the second round, now much more aware, as some caregivers have become also, of wholistic approaches rather than solely those of the medical-industrial complex.
   I'm so reluctant to write about this. But, as I write about other things, I need to write about this as well.

The way I’m setting out to do this is in three modes: (1) telling something about the “Then” of the first round of my interaction with prostate cancer; (2) the “Now,” which will include research I’m pursuing as well as my current interaction; and (3) “Reflection,” more expressive of my thoughts and state of mind while dealing with the understandings of the “Then” and the “Now.”

   (What I'll add from here on in the blog about my cancer will be a draft of what may become a larger work ...)