The Interconnectedness of Death

Last February neurologist and Awakenings author Oliver Sacks learned he had terminal liver cancer. He shared this news with the world in an op-ed piece in the New York Times. I was moved by his thoughts about dying and I wrote a blog entry about it. As you may already be aware, Sacks died Sunday. He was 82.

oliver-sacks3His cancer was metastatic, and I’ve read that liver metastases is considered an absolute contraindication for liver transplantation.  However, it was treated. Sacks stated in a July 24 Times piece that in February, the cancer was treated with embolization, a procedure where substances are injected to try to block or reduce the blood flow to cancer cells, and the metastasis was “wiped out.” But a July 7 CT scan showed the metastases had regrown and spread beyond the liver.

He’d started immunotherapy treatment, but it was only to buy him time, and obviously it did not buy much of it.

In an appraisal written for yesterday’s edition of the Times, Michiko Kakutani wrote that in his work, Sacks cast light on the interconnectedness of life. The interdependence of life is a well-known Buddhist doctrine.  There is, too, an interconnectedness of death,  as stated so well by John Donne:

any man’s death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee.

Life and death are interconnected. What Buddhism calls “the cycle of birth and death” is a continuum. Life is the active phase and death is the passive phase. It is said that the continuum of a human being, or more precisely consciousness, is beginningless. As to whether it is endless or not, there are divergent opinions.

From my perspective, finding myself in a situation very similar to that of Sacks,  beginningless and endlessness are not so important. What matters most is the indivisibility of life and death. Fear is one of the greatest sources of anxiety, particularly fear of one’s own death. When we realize the oneness of life and death, its interconnectedness, and the emptiness of all things, there is, as the Heart Sutra says, no fear and no illusion. This is wisdom and with this wisdom we enter into nirvana, which is nothing more than this mundane world of life and death.

That is from the ultimate truth. The relative truth was stated by Sacks himself: “I cannot pretend I am without fear.”

To my mind, “no fear” does not refer to the absence of fear, but rather to how we handle fear.  It means the absence of anxiety, or better, winning out over the anxiety that fear brings. It means facing even death with hope and confidence.

 

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Burning Pain for the Journey

I had the pleasure of meeting Jimmy Carter once. It was in 1982. He was in Los Angeles to promote his book Keeping Faith: Memoirs of a President and staying at the Beverly Wilshire Hotel where I worked. A few of us had copies of the book and one of the Secret Service guys took them up to Carter’s suite for him to sign. That evening we were asked stand outside the entrance to greet the former President as he left the hotel to attend some event. Flashing that famous grin, Carter shook all our hands. As he shook mine, I thanked him for signing the book and he replied, “My pleasure.” A brief but memorable encounter.

I have always admired Jimmy Carter. Many people believe his was a failed presidency. I don’t know. He made a number of tough, unpopular decisions. He followed his conscience, stayed true to his beliefs. I respect that. Most of all, he made a campaign promise never lie to the American people. As far as I know, he never did.

Now, Jimmy Carter is battling cancer. He had surgery on Aug. 3rd to remove a cancerous tumor from his liver. There are a number of different ways to deal with tumors on the liver. With me, it was with inter-arterial chemotherapy and radio frequency ablation – using chemo and high frequency radio waves to bombard a tumor and kill it. Carter had a resection where they cut out about one-tenth of his liver. A healthy liver, which I assume his is, will regenerate very quickly.

During a press conference, Carter said his doctors suspected the cancer had originated in another part of his body. Later, they discovered melanoma spots about “two millimeters” in size on his brain. Cancer that spreads from the place where it first started to another place in the body is metastatic cancer. That is what has also happened to me.

I had cancerous tumors on my liver but we thought my cancer was a thing of the past after I had a liver transplant in May 2014. For months, my scans looked fine, and then this past April my doctors found a malignant tumor in my left femur. It was metastatic. It came from somewhere else, probably my liver. How could this happen, I asked. It wasn’t a question that could be answered. Perhaps there were minute traces of cancer that got into the bone marrow. Perhaps the doctors simply missed it. Medicine is not an exact science.

They cut my leg open, drilled a hole in the bone, removed as much of the cancer as they could, and then put a rod in to give the bone support. After the surgery, I received ten radiation treatments to wipe out any remaining traces of the cancer. I believe Carter is also to have radiation treatments.

Since the surgery, I have had a couple of CT scans and a full bone scan at the end of June. Everything has looked good, but, very likely the cancer is still there, somewhere, hiding.

The problem with metastatic cancer is that evidently there is no effective way to control it. Eventually it will spread to some area of the body where there are vital organs and it will kill you. I don’t think Jimmy Carter’s case is any exception. From what my oncologist told me, mine is not, either.

Carter has one advantage I don’t. He has an immune system. He will be taking a drug called Keytruda to boost his immune system, supercharge it. My immune system is pretty much non-existent because of the medicines I take to suppress it. If I had a healthy immune system, my body would try to reject the transplanted liver.

At his news conference, Carter said, “I’m perfectly at ease with whatever comes.” I can’t say that I am perfectly at ease with the recent turn of events, but I have found it acceptable.

To paraphrase a passage in the 2nd chapter of Chuang Tzu, “Both the acceptable and unacceptable are acceptable.”

You can’t waste your life worrying about your death. When you accept that sufferings and death are both inevitable, you gain a certain amount of freedom. It is not that you resign yourself to a particular fate but rather you become liberated from it. The idea is to free your mind, to make it bamboo mind. Most bamboo is wind tolerant. Because it bends and yields to the wind, it is very stable. A purpose of Buddhist practice is to develop a mind that is stable, so that you can withstand the fierce winds of suffering.

Everyone knows they will die.  We usually think of death happening sometime far off in the future. To truly accept the reality that death may come sooner than you expected is one way you learn to flow and harmonize with life.

We must embrace pain and burn it as fuel for our journey.”

– Kenji Miyazawa (1896-1933), Japanese poet

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Cancer Again (Naturally)

In December, I started having knee pain. I didn’t think too much about it, even though the pain was intense at times. I’ve had intermittent knee problems for some years, and figured it was probably arthritis or age. It went away after about a week, but then it came roaring back in January – deep throbbing pain that would not go away. I went to a couple of orthopedic surgeons and a rheumatologist. They discovered a lesion in my left femur. Possible cancerous. Possibly not, said one orthopedic oncologist.

The only way to know for sure was to do a biopsy. Last Wednesday, they drilled a hole in my bone, went into the left femur, removed tissue from the lesion, and the pathologist on hand during the surgery declared it cancer. Metastasis, to be exact, cancer that spreads from one part of the body to other parts. We, meaning I and the doctors, thought all the cancer was removed when they took out my old liver and gave me a new one.  But, I’m not getting that easy.  There must have been some cancer cells hiding somewhere, perhaps in bone marrow.

Needless to say, having a hole drilled in your bone is extremely painful.  They put a rod in to prevent fractures and make the leg weight bearing. Still, it hurts like hell and pain medication does not provide total relief.

Next is to get with the oncologist I worked with before and decide how to start fighting this thing. From what I understand there are three modes of treatment: radiation, chemotherapy, amputation.

And two battlefronts: the external one, involving the treatments I just mentioned, along with any others that might be available, and there is the inner front, the battlefield of bodymind and spirit. In future posts, as I did before, I plan to share a few of the highlights of my wayfaring through these stages of cancer.

I do have mixed feelings about putting my personal business in front of the public. But, ancient Buddhist texts describe two kinds of illness: those of the unenlightened, and those of the enlightened. The latter are for the purpose of providing opportunities to teach. I would never claim to be enlightened (I can pretty much guarantee you I’m not), nor am I egotistic enough to think I have much of anything to teach anyone.  Yet, if sharing more of my healing journey can be of benefit to others, so be it.

My approach to inner healing is centered on the Healing Buddha (whose image appears in the new header above), and my way is a bit unorthodox. In Tibet, Medicine Buddha is among the Highest Yoga Tantra. I received a Medicine Buddha Empowerment from Taklung Tsetrul Rinpoche in 2002, but I am not convinced that such empowerments are necessary.

In Teachings from the Medicine Buddha Retreat (Lama Yeshe Wisdom Archive, 2009), Lama Zopa Rinpoche says that in Healing Buddha teachings, “The person has to practice Medicine Buddha and have a good heart, with a sincere wish to help others.”

That is the only requirement, and this sentiment fully captures the essence ofBuddhist practice. Just do it. Try to help others. All awakening stems from that.

Now, for some reason, the song, “Alone Again (Naturally)” has been in my head lately.  There are some nice versions available (Sarah Vaughn, Diana Krall) but I chose the original because I liked it when it was first released and it has a beat.  Since I started letting folks know about this new development, the most frequent response I have received from family and friends has been, “I am so sorry you have to go through this.”  I’m sorry about it, too. It’s a real drag, and I am very tired of the pain, but what can I do? I got it. It’s mine.  I own it. I have to heal it.  Actually, that makes it sound as if cancer were something completely external.  It’s not.  I am the cancer.  I have to heal myself.

I have to admit, though, there are times when I feel downhearted.  So, dear readers, here is about the only self-pitying you will get from me, and it will be over in three minutes and forty-two seconds:

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Our Own Lives

I don’t know if you read Oliver Sacks’ op-ed last Thursday in the New York Times where he revealed that he has terminal liver cancer. The piece was of particular interest to me as someone who survived liver cancer via a liver transplant only 9 months ago and has lost 2 family members to the disease in the past 13 months.

I think it should be of interest to everyone because we are all terminal. To paraphrase the title of a humorous and ironic song by Hank Williams Sr., none of us will get out of this world alive.

Oliver Sacks by Elena Seibert
Oliver Sacks by Elena Seibert

I must confess that before this I was not too familiar with the life and work of Oliver Sacks, who is a professor of neurology at the New York University School of Medicine. I knew that his 1973 memoir Awakenings about his work with patients suffering from the sleeping sickness, encephalitis lethargica, was made into a film with Robert De Niro and Robin Williams, which I enjoyed. And that he wrote another book titled The Man Who Mistook His Wife for a Hat, but I have read neither and had to go to Wikipedia to learn more about him.

It’s not necessary to know his life story to be moved by Sacks’ reflections. They are poignant and inspirational. The valuable takeaways for me were the appreciation he expresses for his life and the sense of detachment he has found. Both are indispensable to Buddhist practice, and even though some mistakenly think they are mutually exclusive, they are not.

Buddhism teaches that human life is precious, and that is reason enough to be grateful for the blessing of life. When you face death and survive, appreciation for life seems to blossom naturally. It is a shame to wait until you have a crisis for it to unfold.

In regards to detachment, Sacks writes,

I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at “NewsHour” every night. I shall no longer pay any attention to politics or arguments about global warming.

This is not indifference but detachment . . .”

That is the kind of detachment Buddhism encourages us to develop, but again, while there is still time to watch the news, pay attention to the world, to argue, to forgive, love and cry. We form attachments to so many things – desire, material possessions, even our own sufferings – and it is vital that we learn to let go. As Thich Nhat Hanh tells us, “Letting go gives us freedom and freedom is the only condition for happiness.”

There is not much more to say about the piece. It is called “My Own Life.” It could have been titled “Our Own Lives,” as it speaks to and for us all. Please read it. Here is the link:

Oliver Sacks on Learning He Has Terminal Cancer February 19, 2015

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

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

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* 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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