I am among the first to benefit from new life-saving drugs

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Regular readers of this blog know that I have been dealing with liver cancer for some time, a by-product of a creepy little virus called Hepatitis C (HVC).  The cancer has not been very aggressive but has the potential to kill me.  That’s what cancer does, of course.  My one hope for survival is a new liver.  But there’s a catch.  There always is.

If I re-infect the new liver with the HVC virus, the virus can come back – with a vengeance.  Therefore, it’s preferable to get rid of the virus before one receives a transplant.  Up until now, this was done with interferon.  The treatment is lengthy and can be quite severe.  After his death in November 2013, musician Lou Reed’s wife, Laurie Anderson (herself an accomplished artist) wrote, “Lou was sick for the last couple of years. First from treatments of interferon, a vile but sometimes effective series of injections that treats hepatitis C and comes with lots of nasty side effects.”  You get the picture.

Approximately 12,000 people die every year from Hepatitis C-related liver disease.  Many people with Hepatitis C do not have symptoms and do not know they are infected.  The virus has reached near epidemic levels, particularly among baby boomers.

When I was first diagnosed with the virus, the doctors said my infection was so mild that interferon would not help.  By the time I developed cancer, they were reluctant to treat me with interferon because of concerns about the side effects.

On December 6, 2013, the FDA approved two new oral drugs to fight Hepatitis C: Sovaldi and Ribasphere (NOTE: Evidently, Ribasphere has been around for awhile.).  The key word here is oral.  None of the “vile” injections.  And, fewer side effects.

I began taking these drugs on January 17.  My viral load (the amount of HVC particles floating in the blood) was 800,000.  After taking the new drugs for only 21 days, my viral load went down to less than 43.  Not 43,000 or 4300. Less than 43!  That’s as far as they can measure it.  It might be zero.  The doctors can’t tell.  Needless to say, a positive development.

And no side effects whatsoever.

It’s a revolutionary development.  If they had these drugs 5 or 10 years ago, I would not be in the fix I am today.  The new drugs could possibly save millions of lives.  I am the first patient at USC to begin taking the drugs, and I feel as though I am participating in something historic.

Ira Jacobson, MD, Chief of the Division of Gastroenterology and Hepatology, Weill Cornell Medical College, New York City says the new drugs “will have a major impact on public health by significantly increasing the number of Americans who are cured of hepatitis C.” Others have called it “the beginning of a new era in hepatitis C treatment.”*  The only down side is that the drugs are very expensive, which speaks to the profit incentive for drug manufacturers, a subject too complicated to deal with here.

The real news is that this may mean the end of Hepatitis C.  As far as my role is concerned, of course, it’s very small and I am just among the first to try it. And while the part I am playing in this revolution has some bodhisattva-like aspects, it’s not as though I took on this suffering willingly, or at least, I am not conscious of having volunteered for them.  I am pleased, eager even, to be of benefit to others, but to be honest, I could have done without all this crap.  But we don’t get to choose our sufferings. Or do we?

It is said that bodhisattvas willingly take on suffering in order to liberate all beings, but it’s also said that suffering come from negative karma resulting from past volitional acts.  Frankly, hypothesizing about the source of suffering is the kind of speculation the Buddha viewed as unprofitable.  It will not relieve my pain to know where it came from.

This recent breakthrough has helped to relieve my mind, though.  What I regarded as a sort of lonely, annoying austerity that was happening to me while I was busy making other plans has now gotten a small dose of meaning and purpose.  Now, I feel intimately connected to the sufferings of the some 170 million people worldwide who have this virus and all those who will get it in the future.  I feel that I can truly regard their suffering as my own.

Just because the bodhisattva teachings say you should take the suffering of others as your own, doesn’t mean that is an easy thing to accept.  There are times when you need something like this to help you remember what the teachings are all about.

For some time now, my daily practice has been centered around meditating on the Healing Buddha and chanting the Healing Buddha mantra.  This practice begins with a determination to become a Healing Buddha, to become like sovereign medicines and drugs that benefit others.  I am just beginning to absorb the profound meaning of this.

If wisdom can be received by the body, imperishable by perishable, pure by impure, then it is received by me. Thus having abandoned self let him follow the good of all creatures, like an image of the Healing Buddha, not thinking of worldly things. Let him apply his own knowledge to the service of all creatures; having duly guarded his wealth, let him use it for all creatures. One must produce the suffering which expels much suffering in oneself or another, and also that which produces much happiness.”

– Tathagata-guhya Sutra

– – – – – – – – – –

* http://www.gilead.com/news/press-releases/2013/12/us-food-and-drug-administration-approves-gileads-sovaldi-sofosbuvir-for-the-treatment-of-chronic-hepatitis-c

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Healing and the Emptiness of Karma

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In any discussion about the Buddhist perspective on healing, one of the first things we have to contend with is the doctrine of karma. This is a troubling notion for some modern Buddhists who are inclined to doubt karma (and rebirth) because there is insufficient evidence of their validity. I have doubts myself about these two concepts, yet I have never been willing to dismiss them outright. One thing I’ve learned over the years is that there is little in Buddhism that is not useful on some level.

Sickness is one of the four sufferings taught by the Buddha (along with birth, old age and death). Raoul Birnbaum, in Healing and Restoring, explains the traditional view of how karma relates to sickness:

Most fundamentally, disease relates to either a direct or indirect result of karma, either retribution for specific acts or the ultimate effect of longstanding patterns of thoughts, words and deeds. Since the mind drives the speech and actions that generate karma, it is the mind especially that is seen as root of disease.”

Karma has long been seen as a form of metaphysical payback. If you’re not “good,” then something really “bad” is going to happen. Your karma will get you. Karma became a tool to coerce people to adopt socially acceptable behavior. There is a flip side. Good deeds will reap future positive situations. The amount of merit (punya) a person accrues can result in good karma: a good rebirth, or in this life, good health and freedom from disease. Basically we have been presented with a scenario where a sword of Damocles is hanging over our head and a carrot dangles from a stick in front of our face.

Now, our old friend Nagarjuna had some problems with this. He understood that karma referred to “action” and not to a law of causality, and that all action is volition and volitional. Karma is not the result or effect of action. For karma to be “a law of cause and effect,” it would have to be of the nature of permanence (nityata):

If karma were a fixed thing [i.e. enduring] because of its self-nature, then its ripening would always remain.

Nagarjuna, Fundamental Verses on the Middle Way 17:25

The questions Nagarjuna dealt with in Verses, included whether or not the ripening or effects of karma were imperishable and inevitable, and if perhaps the effects existed prior to the full ripening.  As I understand it, Nagarjuna felt these questions suggested that karma exists from its own side, that it has self-nature. However, that cannot be the case, for all phenomena whether material or immaterial are devoid of any inherent self-nature or essence, and are impermanent.  Things are not “fixed.”  They are sunya – empty.

David J. Kalupahana (who passed away Jan. 15) writes in Nagarjuna The Philosophy of the Middle Way,

Even though there is no continuity of karma (and in this case, borrowing), that is, it does not continue in any subtle or substantial way, the responsibility for that karma cannot be denied once that karma is performed . . .

The simple notion of human responsibility is what is upheld here, not the metaphysical notion of the fruit or result that lies hidden and gradually attains maturity . . .”

I am simplifying Nagarjuna’s explanation a bit, and yet it is simple. He did not reject cause and effect, for actions do have consequences.  However, he does reject the notion that karma is some self-existing force, a Law of the Universe.  It seems to me that a sense of responsibility is the all-important take-away from the doctrine of karma.

Few people in this modern age have any use for the notion of responsibility. As soon as it is suggested that individuals should assume responsibility for what happens to them, one is accused of blaming the victim, etc. That’s missing the point. It is foolish not to take responsibility for one’s own actions, just as it is equally unwise to say that every consequence in life is a result of karma.

We can’t say the cause for every suffering exists within the life of the individual, or that effects are always the result of some past action. But, without a doubt, suffering exists within, and taking responsibility for the suffering can influence the future.

The first step in healing, then, is to “own” the suffering.  We take full responsibility not only for the suffering but also for the healing process. This requires a willingness to break free from past negative patterns in thought, word and deed that can impede healing. It also involves compassion or love for oneself and for others.

The English word ‘heal’ is connected the word ‘hale’, which is related to ‘whole.’ To heal is to be whole. ‘Whole’ also means, “that which has also survived” and “keeping the original sense” and “to heal.”

In Buddhism, wholeness ultimately means to be awakened.  Awakening implies wisdom, but also surviving or transcending suffering, and discovering one’s original nature.  In this way, the path to awakening is also the path to healing.

Listening to and understanding our inner sufferings will resolve most of the problems we encounter. In order to heal others, we first need to heal ourselves. And to heal ourselves, we need to know how to deal with ourselves. If we know how to go back to ourselves, listen and heal, we can change. But most of us don’t know how to listen to ourselves and understand the sufferings.”

Thich Nhat Hanh, “Stop and Heal,” Jamsil Indoor Stadium, Seoul Korea, May 2013

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Healing

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For years now, I have studied and experimented with various Buddhist and Taoist healing modalities, to the extent that I became a certified chi energy healer/teacher.  But until recently, I was rather complacent about integrating them into my regular practice. Now I’ve reached a point where employing these methods seems imperative to me.

Doctors can treat the physical elements of a problem, but often it is up to the patient to tend to the spiritual and psychological aspects.  That is precisely the emphasis of Eastern healing practices.  If, in the process of using these techniques for healing self and others, one can also positively affect physical aspects, so much the better.

From the Buddhist perspective, all practice is a healing practice, aimed at cleaning the poisons of greed, anger and ignorance from our system, curing delusions, and dispelling the disease of suffering.  The historical Shakyamuni Buddha has often been called the “Great Physician” because his dharma is a medicine capable of healing all beings in both body and mind.

In the late Indian Mahayana period, the concepts of “inner” (dealing with the mind) and “outer” practices were formulated, incorporating concepts borrowed from traditional Indian spirituality, such as the chakras.  In China, Buddhism adopted many Taoist ideas, including theories on the flow of chi energy.  And when Buddhism was transmitted to Tibet, “outer” practice developed into the Four Tantras (Gyudzhi) which became the foundation of the Tibetan medical system.

It’s tempting for Westerners with our logical, rational modern minds to dismiss Eastern healing methods as ‘hocus-pocus’ or magical thinking.  I think it is simply a matter of a different approach.

I first learned about Tibetan Medicine in 1984 when I read John F. Avedon’s In Exile From The Land of Snows, which to this day remains the definitive account on the Chinese conquest of Tibet and its aftermath.  Over the course of the book, Avedon recounts a number of healing stories that seem utterly fantastic and unbelievable.  He also devotes a chapter of the book to Tibetan Medicine along with a detailed profile of Dr. Yeshi Donden, who served as the Dalai Lama’s personal physician for two decades and re-established the famed Tibetan Medical Center.  Since this book was published, Dr. Donlen (Dhonlen) has become well-known for his treatment of many renowned patients.

Because the approach of Tibetan Medicine is so dissimilar from the way medicine is practiced in the West, Dr. Donlen’s methods are still difficult for Western doctors to comprehend.  What appears to be almost entirely intuitive at first glance is actually based on the development of acute powers of observation.  In Exile, Avedon quotes Dr. Richard Selzer, who was an assistant professor of surgery at Yale University and had occasion to watch Dr. Donlen at work,

I went to observe Dr. Dhonden with some healthy skepticism.  I was surprised and elated by what I found.  It was as if he was a human electrocardiogram machine interpreting the component parts of the pulse. We have nothing like it in the West.  It’s a dimension of medicine that we have not yet realized.”

Avedon also quotes Dr. Herbert Benson, who led a team of Harvard researchers to the Tibetan Medical Center in India in 1982,

Western scientific documentation of Tibetan claims is nonexistent.  It would be nice, through, to discover the worth of what they have developed over thousands of years.  If their claims are only partly true they would be worthy of investigation.  Therefore, can we really afford to ignore this?”

This same question is relevant to the whole of Eastern healing philosophy and methods.  While the efficacy of these solutions have not been fully studied and documented in the West, they have been practiced for several thousand years, and since we cannot afford to ignore them, it is incumbent upon us to keep an open mind.

Many of my upcoming posts will deal with the subject of healing, and I will discuss some of the methods I’ve learned.  Today’s post serves as an introduction.

In this world, all breathing creatures, all beings – whether human beings, animals, whatever – are exposed to different forms of suffering.  In the Tibetan system we believe that whether we are physically healthy or not, basically all of us are sick.  Even though disease might not be manifest, it is present in dormant form.  This fact makes the scope of disease difficult to fathom.”

Dr. Yeshi Donden, Health Through Balance

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How Can I Heal Thee? Let Me Count the Ways

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One way is through poetry:

A friend of mine sent me a recent Slate article titled Patients Need Poetry. It’s about Rafael Campo, an associate professor of medicine at Harvard, who was just awarded the Hippocrates Open International Prize for Poetry and Medicine. Who knew there was an award for poetry and medicine?

Well, unbeknownst to me, poetry and medicine have been entwined for some time. For about six millennia, to be exact. According to the National Association of Poetry Therapy, “It is documented that as far back as the fourth millennium B.C.E. in ancient Egypt, words were written on papyrus and then dissolved into a solution so that the words could be physically ingested by the patient and take effect as quickly as possible.”

The National Federation for Biblio-Poetry Therapy (NFB/PT) is the independent credentialing authority for the profession of poetry therapy. Evidently, the first recorded poetry therapist was a Roman physician named Soranus, in the first century A.D., who “prescribed tragedy for his manic patients and comedy for those who were depressed.” Interestingly, the Roman god Apollo is both the god of poetry and the god of medicine.

Over 260 years ago, the Pennsylvania Hospital, the first American hospital, founded by Benjamin Franklin, also used poetry therapy. The hospital published a newspaper, the Illuminator, that published patient’s poems for all to read.

Following in the footsteps of those pioneers of the Pennsylvania Hospital is John Fox, a Certified Poetry Therapist, who was featured in a 2008 PBS documentary, Healing Words: Poetry & Medicine. The film follows Fox and Dr. John Graham-Pole, working with the Arts in Medicine (AIM) program at Shands Hospital at the University of Florida, as they enter hospital rooms and help patients write poems as a way to facilitate the healing process. “Compassion can flourish in the unlikeliest of places: a sterile hospital room.”

Rafael Campo, the winner of the Hippocrates prize mentioned above, practices general internal medicine and often gives poems to his patients. He also teaches writing at Lesley University, and has a book of poetry, Alternative Medicine, coming out this fall.

Verse by unknown poet found on a wall.
Verse by unknown poet found on a wall.

Although I had always felt that poetry and healing were somehow connected, until now I had no idea they have such an extensive history together, or that poetry therapy is so vigorously and comprehensively practiced.

How does poetry help with the healing process? Reading or listening to poetry can take a person out of their pain and misery. Exposed to the thoughts of others, reflecting how the words may apply to their situation, or recognizing perhaps that others have been through  similar suffering and they are not quite so alone, not to mention the inspiration that poetry often brings – all beneficial, even if it temporary. In writing poetry, there is also relief from suffering for a time. The exercise of expressing our feelings is cathartic. That’s just for starters.

In a Time Magazine article on poetry therapy some years ago, Yale Psychiatrist Albert Rothenberg wrote that “poetry by itself does not cure,” but the way it uses words, is “the lifeblood of psychotherapy.” Considering how major portions of the Buddhist sutras and commentaries, were written in verse form, we could probably say that poetry is the lifeblood of Buddhism, too.

In Buddhism, we are advised to practice Right Speech. I think Thich Nhat Hanh summed up what that means when he said, “To use words mindfully, with loving kindness, is to practice generosity.”

Shantideva, in his epic poem Bodhicaryavatara or “A Guide to the Bodhisattva Way Of Life,” wrote, “One should express one’s appreciation for all good words.”

I believe that you can find poetry anywhere, and everywhere, if you look for it. The same holds true for healing. One does not need to be a published poet to create poetry, nor does one need to be trained in medicine to help others heal. Speaking “good words” is all that is required. As Shantideva put it,

Speak with sincere and coherent words
In a soft and gentle tone,
Words that are clear in meaning
And rooted in compassion.

When looking at others,
Drink them in with your eyes
And open to them your heart, thinking
That through them you will come to awakening.

Great benefit arises from aspiring
To labor in the fields of virtue and kindness,
And from being the antidote
To the suffering of sentient beings.

From Chapter V “Guarding Awareness”

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Tune In to Hep C

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One reader suggested to me privately that the title of my last post was over the top, and perhaps so, but as Jimmy Buffet wrote, “If we couldn’t laugh, we would all go insane,” and I reserve the right to laugh at my own suffering, even if I am alone in doing so. However, I do apologize if anyone thought it was in bad taste.

Coincidentally, I saw on CNN today that the Centers for Disease Control and Prevention is warning “baby boomers” to get tested for the Hepatitis C virus. In the latest issue of the Morbidity and Mortality Weekly Report (not the most uplifting title either), the CDC says,

Many of the 2.7–3.9 million persons living with HCV infection are unaware they are infected and do not receive care (e.g., education, counseling, and medical monitoring) and treatment. CDC estimates that although persons born during 1945–1965 comprise an estimated 27% of the population, they account for approximately three fourths of all HCV infections in the United States, 73% of HCV-associated mortality, and are at greatest risk for hepatocellular carcinoma [cancer] and other HCV-related liver disease.”

Hepatitis C is transmitted through infected blood, by sharing needles, piercings, blood transfusions, and operations. I’ve heard reports of it transmitted by snorting cocaine and other drugs. You can even get Hepatitis C from using the razor or toothbrush of an infected person.

The CDC also reports that only 55 percent of people diagnosed with Hep C have a history of risky behavior. Many infections were acquired through yet undetermined exposure.

Gregg Allman and Natalie Cole perform at the Tune In to Hep C benefit concert at the Beacon Theatre in New York on July 27, 2011. (Rob Bennett/AP Images)

The list of well-known people with Hep C is long, and includes the names of folks who might fit the profile of a “usual suspect,” such as Keith Richards, Gregg Allman, Natalie Cole, and David Crosby. However, there are others who don’t fit that profile, like Billy Graham, Naomi Judd, Frank Reynolds (ABC news anchor), and Dharmachari Aryadaka, the first Buddhist chaplain in Washington state prisons.

The Director of the CDC’s Division of Viral Hepatitis, Dr. John Ward, says, “We had an epidemic of hepatitis C transmission in the ’70s and ’80s, and we’re now seeing an epidemic of hepatitis C disease.”

The really insidious part of Hep C is that you may feel you are not at risk because you don’t have any symptoms, but most people don’t have symptoms of hepatitis C for decades after being infected, and all the while it’s stealthily destroying your liver.

Hepatitis C can be cured. There are new drugs that will clear the virus from a person’s body. They were developed a bit too late for me. My only cure is a transplant. The HVC test is a simple blood test, a liver function test to determine if your enzyme levels are elevated or not.

So, if you are a baby boomer, and I know some readers of The Endless Further are, get yourself tested. Frankly, I think everyone regardless of their age group should be tested. Why not? It’s a cliche, but it’s true: better to be safe than sorry.

Get Tuned In to Hep C.

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