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


Farewell to Tea

In this post-transplant life I am now living, I am forced to give a few things up. Like tea. I have always enjoyed tea, but to be honest I am just relieved I don’t have to give up coffee. I’ll take coffee over tea any day.  A world without coffee would be just too cruel.

Not only do I have to stay away from tea (including green tea) but also all herbal or organic medicines/products without consulting my transplant team because they could cause a potentially dangerous interaction with the medicine I’m taking. The problem with many herbal medicines is they just haven’t been researched enough. For instance, with green tea there is some evidence to suggest that green tea flavonoid may help in the preventing re-infection with of the virus hepatitis C following liver transplant. But nothing definitive.

That’s okay. For once in my life I am not going to fight authority (“authority always wins” anyway). I am content to follow my doctor’s orders and not do or take anything without approval. At least, I  have my coffee.

But, in the meantime, I shall miss tea, especially in the wintertime, when it’s cold out, and when a nice, warm cup of tea can be so soothing . . .

As kind of a farewell to tea, here is a selection from Drink Tea and Prolong Life, the famous essay by Eisai (1141-1215), the Tendai monk who brought Rinzai Zen (and green tea) to Japan from China:

The secret to living a long life is to drink tea; it is the most wonderful medicine for maintaining one’s heath. It springs up from the hillsides as the spirit of the earth. Those who gather and use it are guaranteed longevity. Both India and China value it greatly, and in the past our own country had a high regard for tea. It still has the same exceptional qualities and we should use it more.

It is said that in the past, humanity was in harmony with all the universe, but now it seems that humanity had declined gradually and has become fragile, so that our four bodily components and five organs have degenerated. This is why acupuncture and moxa remedies do not save, and even treatment at hot springs has no effect. Those who are treated with these methods become weaker and weaker until death comes to them, a most dreadful prospect to consider. If these traditional healing modalities fail to help people today, then there is hardly any relief in sight.

Of all things existent in the universe, the most noble is humanity. Because life is precious, it is prudent and proper to [drink tea] . . . Drink lots of tea, and one’s energy and spirits will be restored to full strength.”



State of Grace

It’s been a while since I have passed along an update on my health. I’ve recently received a few private inquiries, so here’s the dope:

As some are aware, I have liver cancer. Right now I feel fine. The last time I talked about this, I mentioned that I had undergone a procedure which “effectively treated” one of my tumors. That’s medical-speak for destroying one of my tumors. I have another tumor, which more frequently than it used to, let’s me know it is there with small intermittent pain. I am supposed to have surgery, a resection, where they will cut the tumor out and then it will be history, too.

I want to have this surgery about as much as I’d like a poke in the eye with a sharp stick. Not to mention that very idea of being cut open is, to me, scary. And, I’ll be spending about a week in the hospital. But I don’t have much choice.

My real problem at this point is dealing with the medical center. I had a consultation with the surgeon who would perform the surgery on Nov. 29th, and here it is 2 ½ months later, and they still have not scheduled it. I was approved for a transplant in September and yet they did not submit my case to the insurance company for the financial go ahead until just a few weeks ago, some 5 months later. While I realize that I am just one of 250 or so transplant patients the medical center is dealing with, at the same time, this is not like I’m taking my car into the shop for a tune-up. It’s a life and death deal here, and I don’t know how much longer I can go on making allowances for this lack of action, lack of communication, misinformation, etc. (I’ve described only the tip of the iceberg.)

So, that’s the story. I haven’t discussed it much on the blog mainly because I am not completely comfortable putting my business out in public for the whole world to read, although, it is an extremely tiny portion of the world that reads this blog. I am a rather private person by nature and that’s why I don’t waste a lot of space here discussing myself.

But, if things don’t improve with the medical center, I will be very tempted to “out” them and then I will have a lot to say on the subject.

I wish I had an insightful Buddhist perspective to offer about this, but I don’t. It is what is it is: dukkha. Suffering. I think about a passage in the Vajradhvaja Sutra where it says that the heroism of a Bodhisattva is found in the practice of “not being troubled by suffering, by ability to take pleasure in the giving.” To paraphrase Bruce Springsteen, I’m no hero, that’s understood, all the redemption I can offer is in my words, here on this blog. I don’t spend a lot of time thinking about my suffering, ruminating over the fact that I have cancer. I am trying to live my life without letting cancer control it. Some might see that as a form of denial, and perhaps there is a grain of truth there. Yet, in most cases, suffering only has power to defeat us when we give suffering that power. I may end up physically defeated by cancer, but I refuse to let the suffering itself control my mind and spirit. That’s how I see transcendence.

And The Endless Further blog is a form of giving, and I do take some small amount of pleasure in knowing that a few folks find what I write on it worthwhile and helpful.

Here’s a song I wrote and recorded in 2002. I made it into a video last night. Apparently, I was not in much of a Bodhisattva frame of mind when I composed the lyrics, but it more or less captures the spirit of what I’ve been trying to say here at the end.



Tune In to Hep C

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.


The Doctor Will See You Now

Suffering (dukkha) is a disease, the basic ‘ill’-ness of life, and because the Buddha offered an insightful diagnosis and effective treatment for this malady, he is called The Great Physician.

Every disease has a cause, and the cause for suffering, the Buddha taught, is the false sense of “self” and the passions this delusion inflames. The treatment he prescribed is the Eightfold Path, which we can summarize as ethics, meditation, and wisdom. Ethics I always feel is self-evident. Everyone, irrespective of religious considerations, should strive to live an ethical life. Meditation is the process that cools the fever of passion, and wisdom is the insight into and realization of no-self and all that goes with it.

The cure, then, we call Nirvana. The popular definition of this word is “blown out,” as in a candle being extinguished, and has sometimes been linked with the idea of extinction (of the entity of human life). However, its other and more relevant meaning has to do with the restoration of healthy conditions after the disease of suffering is treated.

There is the famous story of the maiden Kisagotami who from her balcony watched Siddhartha when he was a prince return home after he learned of his son’s birth. So taken by the prince’s beauty and glory, she spontaneously broke out in song: “Happy is the mother who has such a child, happy is the father who has such a son, happy is the wife who has such a husband!” The word she used for happy was nibbuta. Now, the future Buddha took this word, nibbuta, as a synonym for nirvana (nibbana) and transforms Kisagotami’s song in this way: “In seeing a handsome figure, the heart of a mother attains Nirvana, the heart of a father attains Nirvana, the heart of a wife attains Nirvana.” Then he asks himself, of what does Nirvana consist? And the answer he arrives at is, “When the fire of passion is cooled, the heart is happy.”

Nirvana, that state said to be “incomprehensible, indescribable, inconceivable, unutterable” is actually, just plain and simple happiness, the transformation from a state of ill-ness into a state of health, and well-being.  We can accept the idea of “complete nirvana” as allegory, for there are few more powerful images than that of the Bodhisattva who forgoes this ultimate state to stay in Samsara, the world of suffering, and liberate other beings.

But liberation in this sense is a metaphor, because suffering is a chronic disease. As long as we live in the world, we will experience suffering. Liberation, Nirvana, these words mean to maintain a state of well-being, balance, happiness, while in the midst of suffering, a sort of “grace under pressure.” In this way, the key to good health is simply listening to the physician, picking up the prescription, and following the directions.

In the case of sickness, one needs to diagnose it, remove its cause,
Attain the happiness of good health and use reliable medicine for it;
Similarly, with suffering, one should remove its cause, and recognize its remission
And the path of remission should be applied and attained.

Uttaratantra Shastra