Tuesday, May 24, 2005


Posted by Hello

The photo, with my son Jeroch, was taken a year ago immediately following the final performance of a play I was in...so there's still a touch of stage makeup visible.

The greatest thing in the world is to know how to be oneself.

---Michel De Montaigne

I have full faith that even when you are down you will not sink, you will not falter, you will not crawl because you will be that special child who understands there are moments in life when there are no answers, no rhymes, no reasons but to grow beyond yourself.

---Grange Rutan

You are relaxed and ready. You are prepared for the operation. It is an initiation. You are being initiated. Such initiations have been practiced forever, under other names. You are safe.

---Indira Parsons

That particular thought of Renaissance philosopher Montaigne has been among my favorites for many years. Grange and Indira are 2 personal friends, who emailed me their encouragements a little over a year ago, before the "operation." I printed out their complete messages and have carried them with me in my wallet ever since. I don't usually do that, so I must assume it was only the first of the new behaviors since---initiation.

We guys who've endured one procedure or another for deranged prostate greet each other with the secret handshake of the service club or 12-step group. We say things like, "I'm still at .11" or "I'm holding off for 8.6." These are PSA numbers and refer to where we are on a certain lethal level of understanding. After he's been diagnosed, a man starts thinking this way and talking this way because from now on an aspect of his life will be living from one periodic blood test to the next.

The initiation has to do with how one deals with such a reality. A few months after my operation to remove the offending gland, I learned my body still was in battle against tiny demons and we would proceed to shoot radiation in there after them. On Friday, even though my specializing doctors think it's too soon to tell, I got Dr. Conjeevaram to give me my first numbers since that therapy concluded 6 weeks ago. When I read I'm down to .27 I felt a new kind of relief. Oh, we want that number lower...and hopefully in another 2 months that's where it will go. But in the meantime, it's like my life is on vacation and the vise of anxiety is loosened a couple of turns.

Immediately after my appointment, Dana, Ilona and I piled into the Hybrid and tooled up to Barcelona, New York, on Lake Erie, which is one of our favorite hangouts. From there we visited with my sister---and by golly, did find the stand of trailing arbutus our mother used to look for each Spring, and a couple other rare wildflowers too---and had a wonderful family cookout the next day in Sugar Grove, Pennsylvania, with Dana's aunts and cousins. We especially enjoyed lollygagging our way home yesterday when everyone else was hard at work at school. OK, maybe Ilona didn't so much because she still had that honors English homework to do in the back seat.

It's not part of our family tradition or work ethic to just take off like that. The people we visited kept asking us what urgent business really brought us up there...and we found ourselves saying we just wanted to see them. Who drives 6 hours just to say hello? Should I tell them that maybe I've completed my initiation? Do I have a chance right now to see my life in a new light? A new Light? Is it safe to Lighten up? This may be the first time I've allowed myself to feel I'm on a journey.

My generation may have gotten the idea we're supposed to have drive and ambition. We have to go somewhere. We're Americans and actually can amount to something. Many of us choose not to be too aggressive about all that, but to get those good grades and job evaluations you ought to have some kind of balance with a forward edge to it. Too much friction and you may burn out...but the right stuff can set you on fire, a shooting star, a leader of the people. But you have to do the driving...unless you are one of the lucky ones, and I for one never think about luck.

Now I am feeling more that I am letting things lead me along. I am appreciating a spaciousness in time. I am looking around more, enjoying the scenery, and feeling that's OK. At 65, that should be OK, but the drive to keep going---on into my 70s---is strong these days. But I'm allowing the drive to take me now. I'm on cruise control, and there's some relaxation possible in that. Even surrender. I think I know myself well enough that I'm not just on a Cloud 9 of relief. This is a new side of me to get to know...and of course I need to see how others react. But other people may not have as much influence on what I do as before. There seems to be a new voice calling me, leading me.

I like how men continue a sense of humor about our conditions. Garrison Keillor, who is around my age, seems to understand it...and gave us some real hilarity on Saturday about the prostate and urinary difficulties. How can such matters be funny? Listen for yourself about 9 minutes into the show~~~ http://prairiehome.publicradio.org/programs/2005/05/21/ in Segment 1, under "Nice Script."

I know that women have a similar initiation. Perhaps it comes with a diagnosis involving the miraculous female physical organization. I talked with women in the waiting rooms, and there seemed to be a similar communication together as I have enjoyed with men during our particular therapies. I don't know whether women experience the same possibilities of humor in their situations. I know one who does...or did, because I haven't seen her since her procedure a couple weeks ago. I need to find out.


jazzolog said...

I got an email from my friend Aspiemom yesterday reminding me that sometimes I mention personal things in messages, often as an example of something, but then neglect to send out followups. Specifically she was wondering about my daughter Ilona's boyfriend, whom I mentioned was in London last Thursday...and he still is. In fact the residence where his relatives live is 2 blocks from the bombings. Keenan had been calling her nearly every day, but of course there were no phone lines available that day and we all were worried naturally. He did get a call through the next day, on Friday, and said no one even could leave the house the day before. By that time, parents of other Athens students currently in London had networked and were relaying messages with each other. So everyone that we know about over there is safe and sound, and I believe the 6 week tour is coming to an end in a couple days. I'll see if I can hold off Ilona in any thought she may have to travel to Cincinnati in the middle of the night to welcome the plane...but I have to admit if she wants to go I may be up for the drive. Keenan called from the Tower of London the other day, having just seen the Crown Jewels, and asked Ilona if there were anything she could think of that he might bring her. Let's see, can I even remember being young enough to promise a girl the world?

On another note, I certainly do not want to withhold the good news we received yesterday about my health situation. Diagnosed with prostate cancer a bit over a year ago, I've had both surgery and radiation therapy afterwards, when we discovered the operation left just a hint of it behind. Two months ago I had my first PSA (prostate-specific antigen) blood test and was told there still was a trace. But not so fast: my specialists advised that would be too early after radiation to tell for sure. Yesterday Dr. Batten let me know the slight figure has decreased to half what it was in May, and what there is is negligible. He feels certain the treatments have been successful and we can expect complete recovery, to be verified with another test in October. He also referred us to the case of Arnold Palmer, who went through exactly what I did in 1997. I believe the guy is still out there chasing a golf ball around...and encouraging us guys to talk it up about prostate cancer. http://www.golferslifestyle.com/arnoldpalmer.php

Thanks for your concerns about these various trials of contemporary life. With some of these tensions easing now, I believe I may actually return to getting myself organized again.

jazzolog said...

It may be worth shelling out for the Sunday NY Times at your newsstand. There's a long article about what it takes for those of us who have had to become serious patients in the last few years.

The New York Times
August 14, 2005

Awash in Information, Patients Face a Lonely, Uncertain Road

Nothing Meg Gaines endured had prepared her for this moment. Not the six rounds of chemotherapy for ovarian cancer that had metastasized to her liver. Not the doctor who told her, after Ms. Gaines was prepped for surgery, that he could not operate: a last-minute scan revealed too many tumors. "Go home and think about the quality, not the quantity, of your days," he said.

Not the innumerable specialists whom Ms. Gaines, then 39 and the mother of two toddlers, had already mowed through in her terrified but unswerving effort to save her own life. Not the Internet research and clinical trial reports, all citing the grimmest of statistics. Not the fierce, frantic journey she made, leaving home in Wisconsin to visit cancer centers in Texas and California.

Now, just about out of options, Ms. Gaines faced an excruciating decision. Her last-ditch chemotherapy regimen did seem to be working. Three medical oncologists thought she should stick with it. But two surgical oncologists thought she should first try cryosurgery, injecting liquid nitrogen into the tumors to shrink as many as possible, and then following up with chemotherapy, allowing it to be more effective.

The catch? Ms. Gaines's chances of even surviving the procedure were uncertain.

"Who will decide?" she asked a surgeon from Los Angeles.

The doctor then recited what has become the maddening litany of medical correctness: "We're in the outer regions of medical knowledge," he said, "and none of us knows what you should do. So you have to make the decision, based on your values."

Ms. Gaines, bald, tumor-ridden and exhausted from chemotherapy, was reeling. "I'm not a doctor!" she shouted. "I'm a criminal defense lawyer! How am I supposed to know?"

This is the blessing and the burden of being a modern patient. A generation ago, patients argued for more information, more choice and more say about treatment. To a great extent, that is exactly what they have received: a superabundance of information, often several treatment options and the right to choose among them.

As this new responsibility dawns on patients, some embrace it with a sense of pride and furious determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.

Many prostate cancer patients can choose a passive treatment, like watchful waiting, or a more aggressive therapy, like radiation or surgery; each has differing risks and different patterns of side effects. Women with breast cancer often hear conflicting advice from the experts: lumpectomy or mastectomy? Some patients with heart disease can be told by one doctor that they need a bypass, by another that they need angioplasty and by a third that drugs would be just fine. Infertility patients face a blizzard of options.

Such quandaries do not apply only to life-rattling illnesses. Last summer, with the second joint of his left big toe painfully throbbing from gout, Carl Schneider, a law professor at the University of Michigan who had already consulted his internist and a rheumatologist, leaned wearily against a hospital wall as three other doctors argued over which regimen he should follow. One doctor handed him a 20-page Internet printout that cited gout treatment studies, none of them definitive.

"At 57, it's a little late to be starting medical school," Mr. Schneider remarked acidly. "But the burden still falls on me, having to pick among opinions."

The job of being a modern patient includes not only decision making, of course, but often coordinating doctors, medical records and procedures, as well as negotiating with insurance companies, who are often the ultimate arbiters over which treatment options will be covered.

As Ms. Gaines was being treated for cancer she had to wage such a battle. Before she had her diagnosis, her H.M.O. gynecologist laparoscopically removed what appeared to be a cyst on her ovary. But during the procedure, the cyst, which turned out to be a malignant tumor, burst, sending cancer cells into her abdomen. She then wanted to be treated by a specialist, but her insurance plan did not have a gynecological oncologist on its roster. So Ms. Gaines spent months fighting to transfer her care to an out-of-network doctor. Finally the insurers relented, but only after the specialist agreed to perform her surgery at the H.M.O.'s regional hospital, not his own.

Like many patients, Ms. Gaines did not turn to a primary care doctor to help coordinate her care or aid with decisions. Increasingly, that soul-healing doctor-patient relationship has become harder to sustain. Whipsawed by insurance plans, patients frequently switch physicians. Pressed by diminishing reimbursements, those doctors are building ever larger, more unwieldy practices, with less time for each patient.

The strain has left doctors themselves feeling exhausted, angry and heartbroken.

"My visits are almost ludicrous," said Dr. John Russo, an internist in West Orange, N.J., who sees 5,000 patients a year. "But economically you have to see so many more patients than you should, just to keep the lights on. You can't sit and talk and really get an entire history. So you do what you were taught as a resident: do more tests, don't spend more time with patients, getting to know them."

Ms. Gaines was out of time. She had to make a decision. She felt the chill of mortality and the full weight of nearly a year of drastic operations, blood clots, a punctured lung, chemotherapy, research, traveling, countless specialists and unanswerable questions bearing down on her.

"Who's in charge here?" she thought that night, wishing someone would just issue her marching orders. "Oh. I am."

When Doctor Knew Best

A generation ago, most of the diagnostic tests that monitored Ms. Gaines's cancer did not exist. Nor did the range of treatments. After the cancer had been found, most likely her primary care doctor or local oncologist would have told her what to do. And Ms. Gaines would have obeyed.

Until the late 1960's, patients perceived doctors, then almost exclusively white men, as unassailable figures of authority. They knew best. But during the social and cultural upheaval that ushered in the women's rights, civil rights and consumers' rights movements, the paternalistic authority of the physician became deeply suspect. Women fought to join the conversation. Challenging the mystification of medicine, the Boston Women's Health Book Collective published "Our Bodies, Ourselves," a landmark guide. Women changed conventional wisdom about the prevalence of hospital deliveries, hysterectomies and mastectomies.

With the introduction of Medicaid and Medicare in 1965, health care began to be seen as a right, not a privilege. Patients repositioned themselves as consumers of health care, entitled to as much information as possible. Support groups sought to empower patients with booklets and questions for doctors.

In response, many patients became insatiable consumers of medical information. In a New York Times/CBS News poll of 1,111 adults in February, 44 percent of patients who received a diagnosis sought additional information about their treatment from sources others than their physicians, including the Internet, friends and relatives, and other doctors.

Although the push has been on for patients to become more knowledgeable about their care, as they read unfiltered information, they can become more flustered. Shauntel Anderson, 24, a baby sitter in the Bronx who learned she had cardiac arrhythmia, had to choose between continuing her medication or being hospitalized for a procedure known as a catheter ablation.

"I did research for two or three weeks," Ms. Anderson said. "I went to 15 or 20 Web sites because I needed to know everything they were going to do to me. But the Web was messing me up: I got confused because I didn't understand it." Her cardiologists then suggested a few helpful sites. She chose the ablation.

The drive among patients to become better informed has been fueled, in part, by the array of options that often accompanies diagnoses, many so new that gold-standard treatments, backed up by randomized trials, have yet to emerge.

But hope is a potent elixir. Patients with good insurance or other financial resources have quickly learned how to find medical centers that could offer them the latest procedures, like the cryosurgery Ms. Gaines sought out, which had no long-term experience behind it at the time.

A patient's research does not have to be any more extensive than turning on the television. The eruption of pharmaceutical advertising has introduced millions to medical conditions that were once discussed only in the privacy of a consultation, and to the promises of new approved treatments. And inevitably following these promises is the prompt: "Ask your doctor."

At the same time, medical science itself is widely perceived to be in a Renaissance period. Basic research in fields like biotechnology has received deep bipartisan federal support. As the results continue to unfold, patients with major and minor health problems can choose from a fresh array of options: some good, some bad, some redundant and some virtually miraculous.

In the Times/CBS poll, slightly more than half the patients who received a diagnosis were given multiple treatment options. One-third made the decision on their own, with those between the ages of 45 and 64 most likely to do so.

Whether patients make a decision by themselves or at the behest of a doctor, the fact that the choice is theirs has become known among bioethicists as patient autonomy - the right of governance over one's own body. The term is symbolic of the pendulum swing away from the paternalism common through the 1960's. Patients began seeking second and even third opinions.

Floyd Allen, a social worker with CancerCare, a support organization, says that the prostate cancer patients he counsels become exasperated: "For the people who have insurance, they're angry about having to shop around for opinions, and the folks on Medicaid are mad because they can't afford to shop around."

By the 1980's, opinion seeking could even turn into doctor-shopping for specific procedures. Patients started suing doctors, an escalating conflict leading to, among other things, high malpractice premiums, Congressional debates and, in the examining rooms, overcautious conversations between litigation-alert doctors and patients.

Within the past decade, the shift in the doctor-patient conversation - from, "This is what's wrong with you, here's what to do," to "Here are your options, what do you want to do?" - became all but complete. Baby boomers had gotten what they had asked for. And then some.

"People want to feel a part of their health care," said David Mechanic, a medical sociologist at Rutgers University. "But they don't want to be abandoned to making decisions all on their own. When a doctor says, 'Here are your options,' without offering expert help and judgment, that is a form of abandonment. "

The Doctor Is Out

In the 11 years since Rick Sommers received a diagnosis of multiple sclerosis, medical advancements have raised and dashed his hopes, and ultimately led to a schism with his neurologist.

Mr. Sommers, 45, a former marathon runner and New York D.J., went through the shock that many patients experience, after two neurologists determined the cause of his numbness and tingling.

"The doctors are trying to map out exactly what is wrong with you," he said, "and they're giving it to you in sophisticated neurologic terms. It's like being in a foreign country: you don't speak the language, and you're trying to find directions."

Multiple sclerosis is a chronic disease in which the immune system can go haywire and cause neurological disturbances, called exacerbations. The disease can stay dormant for years at a time, and then flare up. In Mr. Sommers's case, his arm goes dead, and his hand feels like it is on fire.

In 1994, there was a waiting list for the one treatment available. Mr. Sommers became a patient of a leading specialist, and went on a double-blind study for a new drug, not knowing whether he was getting it or the placebo. Over the next two and a half years, he took four pills a day.

"I thought I was being proactive, and I had a fantasy that maybe we were on the cutting edge of something," he said.

He still had the occasional exacerbation, which required rugged outpatient treatment. There was no way to know whether the pills staved off even more attacks. One morning he was in his apartment, paying bills, idly listening to CNBC. The anchor, announcing company news, said that over the weekend, researchers reported that the test drug had flopped. "I slumped in my chair," Mr. Sommers said. "I felt devastated. I spent two and a half years in this study, and this is how I'm finding out it's not working?"

In the years since the disease was diagnosed in him, multiple sclerosis patients have gained access to more information, more specialists and more treatment options. In addition to a phalanx of alternative remedies, at least five drugs that try to prevent exacerbations are on the market. Mr. Sommers has been taking one for the last few years. And he has tried about 10 different medications for symptoms related to multiple sclerosis.

But with all the good news, there is still no cure. Patients can be even more confused, tantalized by the treatments and the plethora of sources of information. Mr. Sommers receives an electronic newsletter from the National Multiple Sclerosis Society, a patient support group, and sets his computer's stock watch for advisories on companies researching drugs.

Early detection for M.S. has improved, which means that more patients are seeking treatment. Clinics are filling rapidly. Mr. Sommers had to make appointments with his neurologist four months in advance.

"It's hard to get a hold of the doctors at the clinic," he said. "My own doctor is so overtaxed. He's pushed, he's pulled, he's torn, he's frantic, he does the best he can. But whenever I saw him, I felt like I was taking up his time. The waiting room has gotten so cramped! There are a lot more hoops to jump through before you can get to the doctor: I got more personal care 11 years ago."

His disease is progressing. He has not been able to run in five years. Sometimes, even walking is hard. But given the stress of going in for a checkup, Mr. Sommers decided to give up on his neurologist of more than a decade. It had been nine months since his last visit.

"I wondered if he thought about me when I wasn't there," Mr. Sommers said. "I wrote a heartfelt note to my doctor to let him know why I wasn't coming back. But I never heard from him."

Even though he recently found a new neurologist, he does not know if this doctor will become the medical cheerleader and adviser that he longs for. "So my gatekeeper is my girlfriend, not my doctor," Mr. Sommers said. "We hash it all out, we figure out the options. She has a good, clear focused head about this stuff."

The Researcher

Last summer, as doctors tried to figure out why her husband's urine had turned the color of cola, Joyce Rich went to work figuring it out herself.

Mrs. Rich, 58, a nursery school teacher from New City, N.Y., had to do something with her nervous energy. Like so many people who, when threatened by illness, feel frightened and helpless, she turned into a formidable Googling machine. Doing the homework gave her the comforting illusion of having a measure of control.

"I can't go into these things ignorant, although in a way I am," Mrs. Rich said. "I would feel as if I just wasn't doing my part."

Mrs. Rich kept meticulous journals of questions and recommended urologists. She made copies of every test result, lugging them to every consultation. "With our luck," she said, "I was afraid they would lose the reports, so I delivered them myself. Besides, I never know if I'm going to stay with the doctor I am seeing, so I make sure I have our records ready for the next one."

Shortly after her husband's illness was diagnosed, she sat trembling in the beauty parlor and confided to her hairstylist, "Ira has kidney cancer!"

Google search: kidney cancer. Results: 10,300,000. And counting.

Her hairstylist called around for referrals. Mrs. Rich's manicurist was particularly helpful: her best friend just had a kidney removed. The manicurist gave her pages of online research.

Mr. Rich, 59, is not robust. He had already undergone open-heart surgery. Removing his kidney laparoscopically was preferable for his overall health. But the tumor was in an atypical location, making the procedure even trickier. Mrs. Rich took her list of doctors to the public library and checked résumés, how often the surgeon had performed the procedure, the number of malpractice suits and their resolution.

"I wasn't aware how often doctors change specialties and narrow their field," said Mr. Rich, a high school guidance counselor. "They do one thing, and then you call them and they're doing something else."

Finally, Mrs. Rich narrowed her list to six. Then, the very process that had helped her feel in control now made her feel more helpless than ever. She had come to the end of her research, with absolutely no idea how to decide. At last she turned to the first place she could have gone and saved herself so much trouble, Mr. Rich's longtime internist. The Riches were lucky to have a doctor willing to be their guide. He did not bother with a menu of options. Without polite shilly-shallying, he gave them just one name.

"It was such a relief," Mrs. Rich said. He sent the Riches to a specialist who was not even on her list. "Cleveland?" Mrs. Rich gasped, "I thought Cleveland comes to New York!"

In retrospect, said Mrs. Rich, who was thrilled with the specialist, "You start this process, and you hope you get all the information you need to make a valid and intelligent decision. But you really don't. And that's where your doctor comes in handy."

So Little Time

With patients having so much medical information, being a primary care doctor these days means donning armor daily. Here comes the public, bearing pharmaceutical brochures, sheaves of Internet printouts, pages of time-consuming questions: Vioxx? Total body scans? Why didn't you recommend a carotid artery Doppler?

Uh-oh, the 11 o'clock news had a three-minute special on pain management. Or the estrogen update du jour. Ask your doctor! The phones will start at 6 a.m., the call-back list will balloon. Inquiring patients will be angry that their calls were not returned.

But besieged doctors first call those with emergencies, then consulting doctors, laboratories, pharmacies, insurance companies and, oh, yes, they also start seeing patients who have scheduled visits.

Doctors feel the benefits and burdens of medical information being so accessible to patients. Yes, studies show that the more informed patients are about their care, the more likely their health will improve.

But the information that patients bring to the office visit is often half-baked. Doctors must spend precious moments in an already constrained time slot re-educating them.

Dr. Russo, the West Orange, N.J., internist who sees 5,000 patients a year, applauds patients who do their homework. But, he noted, especially when patients are researching treatment options, they flop down in his office, feeling inundated.

"The patients are stressed, they're so confused, and it's in our laps," Dr. Russo said. "They are deserving of guidance."

He is the generalist; his job is to diagnose problems. Then he refers patients to specialists who, he hopes, will help them with the daunting decisions.

Patients struggle to find their way, Dr. Russo said, but "there isn't one person to walk them through the process."

It is impossible to overestimate the bracing impact of that old-fashioned guide, the doctor who can be a patient's constant, her Pole Star.

Judy Brown, 46, a community volunteer in Nashua, N.H., who suffers from acute migraines, has tried dozens of preventive and pain-relief medications. Yet she has remained with the same headache specialist, who acts as her primary care doctor, for 17 years. A neurologist with a large patient load who does extensive research, he nonetheless always returns her calls, even when he is on vacation.

"I don't think anyone will cure me," Mrs. Brown said softly. "But my doctor helps me cope. And that means the world to me."

Patients who have a continuing relationship with a personal physician, studies show, have greater survival rates and lower health costs. Conversely, the more medical personnel involved in the patient's care, the greater the likelihood of error.

But though that primary relationship is so fundamental for patients, the medical establishment is gradually turning away from it. The number of medical students eschewing careers in internal and family medicine and instead pursuing specialties is increasing. Among the reasons they give are the declining prestige of primary care doctors, the eroding doctor-patient relationship, the financial hardships of maintaining a practice and the drain on family life.

A study in the May issue of Academic Medicine showed that among third-year residents in 2003, 27 percent chose careers in primary care medicine rather than pursuing a subspecialty, down from 54 percent in 1998. Only 19 percent of first-year students said they intended to be generalists.

"I can imagine patients feel lonely, 'My doctor didn't follow me,' " Dr. Russo said. "I wish I could. I wish I had the time to sit down with them."

Making the Decision

When Meg Gaines was a little girl, her father, a lawyer, was transferred to Belgium; the family arrived scarcely 20 years after the end of World War II. She grew up keenly aware of European history, visiting concentration camps and battlegrounds, learning about military strategies.

What was the best way to fight her war against cancer, she asked herself that night in 1995, as she struggled to decide about treatment. Stay the course with chemotherapy or risk the cryosurgery first, which, back then, was a relatively experimental and possibly lethal procedure?

"What made sense to me was to bring in the air force and bomb the hell out of the tumors and weaken them," Ms. Gaines said. "Then go in with the infantry. And so I decided to do surgery plus chemo, not just chemo."

As it happened, the Los Angeles surgeon found only one big tumor. The others, which had earlier scared off the liver surgeon in Wisconsin, were just blood density irregularities and benign cysts.

Eighteen months after Ms. Gaines's cancer was detected, she returned to her job, teaching criminal law and supervising students defending prisoners. The job was the same, but she had changed.

Over the next few years, Ms. Gaines did a lot of thinking and a lot of talking about her experience as a patient, about how brutally difficult it had been to gather information, find doctors and make decisions. She helped found the Center for Patient Partnerships, which opened in 2001, based at the law school of the University of Wisconsin-Madison. It helps patients with cancer and other serious illnesses find doctors and make informed decisions, even as it trains student volunteers from disciplines like law, business, public policy and medicine how to be advocates for patients.

"You can get good health care," Ms. Gaines said. "But there isn't good relay, getting you to the resources and the resources to you." She meets with panicky, bewildered patients and occasionally shares with them her story, if only to make one point: "I tell patients all the time: 'I know this is hard to believe, but you want to know who is managing your health care? It's you or no one.' "

Copyright 2005 The New York Times Company

Jan Hoffman, who wrote this, has worked the metro beat for The Times over the past several years, mostly researching biography and covering some theater events. She also has written some feature articles on victims of 9/11 and the Terror War.

jazzolog said...

With all the toxic pollutants agriculture and industry showers upon us, some of which we inhale and digest, it is very tempting to blame them for disorders like cancer. Gina Kolata, who has been a very careful science reporter for The New York Times since 1987, tackles the issue in today's paper. She has written several books, including Clone: The Road to Dolly and the Path Ahead.

The New York Times
December 13, 2005
Preventing Cancer

Environment and Cancer: The Links Are Elusive

When Mike Gallo learned he had cancer, a B cell lymphoma, two years ago, his friends and relatives told him that they knew how he got it.

His cancer, Dr. Gallo's friends said, was obviously caused by the dioxin that he had worked with for three decades in his laboratory. After all, the Environmental Protection Agency classifies dioxin as a probable human carcinogen. And among the cancers that it may increase the risk for, in high doses, is lymphoma.

Dr. Michael A. Gallo, director of the National Institute for Environmental Health Sciences Center of Excellence at the Robert Wood Johnson Medical School in New Brunswick, N.J., tells his well-meaning advisers that he does not think so.

"I say, 'No, I know my blood levels of dioxin,' " Dr. Gallo said, explaining that he measured them when he worked with the chemical. His levels, he said, are low. And there is no way to make a leap from such low levels of dioxin to his cancer.

Yet many of his friends and relatives remain convinced.

"That's the way people think," Dr. Gallo said. "If you get cancer, there has to be a reason."

And there may be a reason, he and other scientists say. But pinning cancer on trace levels of poisons in the environment or even in the workplace is turning out to be a vexing task. There has been recent progress in addressing the issue, but the answers that many people believe must be out there remain elusive.

"It's an area where there's certainly been a lot of heat and not a lot of light for some time," said Robert Hoover, director of the epidemiology and biostatistics program at the National Cancer Institute. For the most part, Dr. Hoover said, "we are down to speculations based on some data but without having the information we need."

Members of advocacy groups agree that there is much to learn, but they say the questions are too important to brush off by saying the research is difficult or the questions complex.

"Science is very specific," said Linda Gillick, a founder of Ocean of Love, a support group for children with cancer in Ocean County, N.J. "Sometimes you have to think outside the box."

Barbara Brenner, executive director of the Breast Cancer Action Coalition, an advocacy group in San Francisco, said that at the very least people should look for the least toxic alternative to chemicals in common use that may cause cancer.

Having had breast cancer twice, Ms. Brenner is impassioned by the cause. "I have a firsthand experience, and I would do anything - anything - to keep someone else from having that experience," she said.

Researchers, for their part, say they have not given up the quest. In their search for answers, they are trying a variety of methods. They are looking for reliable ways to detect environmental exposures and determine whether they are linked to cancer risk. They are studying the bewildering array of factors that can determine a chemical's effects on individual people. And they are looking at cancer statistics and asking whether there are blips in cancer rates that may point to an environmental cause.

The effort is important, Dr. Hoover said. While most scientists think that only a tiny fraction of cancers might be caused by low levels of environmental poisons, these are cancers that could, in theory, be avoided.

"All it takes is the political will to ban them or impose regulations to minimize exposure, and the cancers are gone," Dr. Hoover said.

The problem is to decide which chemicals might be causing cancer, and in whom.

Some scientists, like Aaron Blair, an epidemiologist at the National Cancer Institute, see hints that environmental pollutants like pesticides, diesel exhaust in cities and workplaces and small particles in the air may instigate cancer.

But, Dr. Blair says, there is a huge problem in following up on these hints because scientists need to figure out who was exposed to what and when the exposure occurred. Asking people is not much help. Most people do not know what they were exposed to, and even if they think they know, they often are wrong, he said.

So Dr. Blair and his colleagues decided to try for the greatest possible rigor by focusing on one group, farmers, that is not only routinely exposed to pesticides that may increase cancer risk, but also keeps excellent records of exposure.

The effort, a collaboration involving the cancer institute, the National Institute of Environmental Health Sciences and the Environmental Protection Agency, began in 1993 and includes nearly every farmer and farmer's spouse in Iowa and North Carolina - 55,000 farmers and 35,000 spouses.

Investigators have been asking the farmers what pesticides and herbicides they used, when they used them and how much they used, and have been obtaining information on other risk factors like smoking. Then they use the medical records from tumor registries to determine who developed cancer and what type was developed.

"We're now just in the period of time where we can look at outcomes," Dr. Blair said. So far, the researchers have found a few associations, but nothing that is definitive.

"I would call it, at this stage, interesting leads," Dr. Blair said. "None are large enough for any regulatory agency to take action or to say they are a human carcinogen. They are leads." They include, for example, a slightly higher rate of lung cancer and leukemia in farmers who used the insecticide diazinon and a possible increase in prostate cancer among farmers who used methylbromide to fumigate the soil.

The investigators looked for an association between pesticides and herbicides and breast cancer, but they did not find one, Dr. Blair said, adding that one pesticide, atrazine, was under particular suspicion because it causes breast cancer in rats and has estrogenlike properties.

Even if the study finds that some chemicals have increased farmers' cancer rates, it remains unclear what that means for the general population, where exposures are usually much lower. Also unclear is whether those chemicals should be banned.

Dr. Blair noted that such decisions were difficult because they were, in part, political, balancing the costs of getting rid of the chemical against the benefits. But, he said, regulatory decisions require reliable scientific data. "You can only make a decision if you know something," he said.

So the studies continue. "We want to know what to worry about, so at least we can make rational decisions," Dr. Blair said.

Gerald N. Wogan, a chemist at the Massachusetts Institute of Technology, takes a different approach. He, like most other scientists, worries that the public is overly concerned about cancer risks from the chemicals they are exposed to. But, he says, the question of how environmentally induced cancers arise is a puzzle that he would like to solve.

Dr. Wogan became interested in pollutants and cancer when he began studying the effects of aflatoxin, produced by mold on peanuts. The toxin caused liver cancer in rats and, Dr. Wogan and others showed, it also causes liver cancer in people. But exposure to aflatoxin was just part of the risk.

Dr. Wogan studied men in Shanghai who were eating foods with high doses of the toxic chemical. They ended up with four times the risk of liver cancer. Another cause of liver cancer, hepatitis B infections of the liver, increases the risk by a factor of seven.

Then Dr. Wogan noticed something that astonished him. The risk of liver cancer was increased 70 times in people who met both criteria; they ate contaminated foods and they were infected with hepatitis B.

"It was like a model system for the environmental causes of cancer," Dr. Wogan said.

The two cancer-causing agents were amplifying each other's effects. He went on to study the mechanisms of cancer causation and discovered that the more he looked at environmental pollutants the more complex and individualistic the biochemical pathways leading to cancer turned out to be.

"People differ very greatly in their response to chemical carcinogens," Dr. Wogan said. "Almost all chemicals, with relatively few exceptions, have to be converted from what they are into something more chemically active to be carcinogenic.

"If you encounter one of these compounds, most of it is converted to less toxic material that is excreted," he continued. "Only a tiny amount is converted to a form that could cause cancer. A small fraction of 1 percent gets converted. And people can differ enormously in their genetic ability to do these metabolic conversions."

Further complicating the issue is that a person's diet, or components of the diet, can increase the activity of enzymes that convert chemicals into carcinogens. And other dietary components can inactivate enzymes that detoxify chemicals.

The calculus grows so complex that it can be virtually impossible to predict what will happen in an individual person exposed to low levels of a possibly toxic chemical. For example, Dr. Wogan said, "The same food, broccoli, can affect both types of enzymes."

Added to this are the effects of chronic infections, like hepatitis B, in which the immune system releases chemicals that can magnify the effects of carcinogens.

In theory, Dr. Wogan said, there is hope for untangling the mess.

"If we knew how to identify exactly which factors or agents or dietary factors were responsible and if we were able to identify their effects in people, then, in principle, cancer is preventable," he said. But, he added: "It's so tough. It's so very tough to do."

In the meantime, he and others say they take comfort in cancer statistics that do not indicate a cancer epidemic. Rates of cancer have been steadily dropping for 50 years, if tobacco-related cancers are taken out of the equation, said Prof. Richard Peto, an epidemiologist and a biostatistician at Oxford University.

What appear as increases in cancers of the breast and prostate, Dr. Peto added, are in fact artifacts of increased screening. When healthy people are screened, the tests find not only cancers that would be deadly if untreated, but also a certain percentage of tumors that would never cause problems if let alone.

His analysis of cancer statistics leads Dr. Peto to this firm conclusion: "Pollution is not a major determinant of U.S. cancer rates."

Advocates for cancer patients, like Ms. Gillick, of Toms River, N.J., do not agree. They say they have heard it all - scientists' insistence that the risk of cancer from environmental chemicals is very low, that it is almost impossible to ascribe cancer in any individual to an environmental exposure, that most cancers are just a result of unlikely genetic draw or spurious mutation.

But Ms. Gillick and other advocates are not convinced.

Her son Michael, 26, was given a diagnosis of neuroblastoma when he was 3 months old. Ms. Gillick had never heard of that cancer, a pediatric cancer of the sympathetic nervous system. But she soon learned how devastating it could be.

Over the years, as Michael spent time in hospitals in New York and Philadelphia, she noticed something striking. Child after child in those cancer wards came from her town and surrounding Ocean County.

"You start talking to the other parents," Ms. Gillick said. " 'Why? How could that have happened?' "

She found what she thought was the answer: trace levels of industrial chemicals in the drinking water.

But the cancer institute and the E.P.A. investigated and said that they saw no particular danger in the water and that what looked like an increase in childhood cancer was just a statistical fluke.

Dr. Gallo was sent to talk to Toms River residents. Although Ms. Gillick said that she respected him and his views and that she found him likable, she did not like his message.

"Scientists," Ms. Gillick said. "They think it was random bad luck or whatever.

"We can't sit back and say, 'O.K., it happened.' If we could find the cause of a lot of these cancers, we wouldn't have to worry about the cure."

That is also the message of the Breast Cancer Action Coalition. "We think there is something going on, and we'd like to find out what it is," said Ms. Brenner, the executive director. "The scientists who say these kinds of environmental exposure are the smallest contributors, I'd like to know how they know that. If we haven't done the research, how can they say with assurance what is the contributor to anything?"

And, she adds, there are now so many chemicals in the environment that the task of figuring out what effects they might have is dizzying.

"Nobody can keep up," Ms. Brenner said. "And we don't know the health effects. I think it is not an irrational response to say our environment is making us sick."

That is not Dr. Gallo's view. Even though he had cancer, he is not blaming environmental exposures.

"If I were to take that tumor that came out of me and grind it up and run it through a mass spectrometer, I could find every persistent organic chemical I've ever been exposed to," he said. "Is that cause and effect? No, it's an association."

Still, he understands the concerns. "We, the scientific community, should take the blame for this," Dr. Gallo said. "Toxicologists, and I'm one of them, have perpetuated the idea that if 100 molecules are going to kill you, then one molecule is going to kill 1 percent of somebody. And that's the problem. We have a tremendous ability to analyze anything and everything, and the scientific community has said: 'Oh, by the way, we ran this chemical in rodents and found cancer. And therefore ... .' "

Dr. Gallo added that cancer was a complex disease. "There is a gene and environment interaction, and the environment is much broader than just chemicals," he said. "The challenge is to figure out what is the role of the gene and how does the lifestyle and environment overlay that gene."

And science, he said, is just not there yet.

Copyright 2005 The New York Times Company

jazzolog said...

After the Initiation into the brush of death, one looks at teachings with a different eye.
I especially watch for useful lessons on Palm Sunday. Good Glory, here one is~~~

Sunday, April 9, 2006 -

"Jesus symbolizes our I AM identity. His going up to Jerusalem means our taking the last step in unfoldment preparatory to the final step, when the personality is entirely crucified and the Christ triumphs.
Jesus riding the ass into Jerusalem means the fulfillment of the time when the spiritual I AM within us takes control and lifts all the animal forces up to the spiritual plane of mastery, purity, and peace. When the I AM takes charge of the body a new order of things is inaugurated. The vitality is no longer wasted. Through high and pure ideals the whole consciousness is raised to a higher standard.
The hosannas of the rejoicing multitude and the spreading of their garments and branches of trees before Jesus, represent joyful obedience and homage that all the thoughts in one's consciousness give when an error state of mind is overcome. 'Blessed is he that cometh in the name of the Lord.' "

--Charles Fillmore
Quotation taken from page 189 of his book Keep A True Lent [link]

And from www.renaissanceunity.org this prayer~~~

In preparation for the resurrection, we release and surrender the past.
We embrace a new consciousness and a new way of being.
Your spirit makes a way in us for new life.
Thank You God.