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


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.



Passings: Jackie Guthrie

Jackie Guthrie, who married folk singer Arlo Guthrie in 1969, died Sunday, October 14, of inoperable liver cancer at the family’s winter home in Sebastian, Fla. She was 68.

Since I am battling the same form of cancer, this is something I wanted to blog.

On October 2, the family posted an update on Guthrie’s Rising Son Records website noting,

“When one of every two men, and one of every three women in America are likely to have cancer, something is terribly wrong with the way things are. Jackie has been the best advocate for rectifying that situation for years. Her posts are everywhere throughout the internet warning against vaccines, fluoride, unhealthy GM foods and a host of other concerns.”

I’m not sure why Jackie Guthrie’s liver cancer was inoperable. Perhaps it was diagnosed too late. For some reason that does not make sense to me, when your cancer passes a certain point, doctors will not even consider giving you a transplant. Seems to me that’s when you need one the most.

According to the Wikipedia page on liver cancer, “Globally as of 2008 liver cancer is the third leading cause of cancer death at 700,000 per year, after lung cancer (1.4 million deaths) and stomach cancer (740,000 deaths).”

Jackie Guthrie was born in Salt Lake City and grew up in Malibu, California. She first met Arlo Guthrie in 1968 while she was working as a cashier in The Troubador, the famous music club on Santa Monica Boulevard in West Hollywood. She had three children with Arlo and a daughter with singer, David Crosby. Writing about his wife, Arlo posted this on Facebook:

Photograph by John Kloepper, Guthrie Family Tour, Socorro NM, 2MAY07

“There are loves, and there are LOVES. Ours was and will continue to be what it has always been – A very great love. We didn’t always like each other. From time to time there were moments when we’d have our bags packed by the door. But, there was this great love that we shared from the moment we met – a recognition – It’s YOU! And we would always return to it year after year, decade after decade and I believe life after lifetime.”

In recent years, Jackie was the videographer during Arlo’s concert tours. This year, there were times when she was so weak that she could barely hold up the camera. Nonetheless, her spirit was resolute to the very end, for as the Guthrie clan also said in their update, “no one in this family is going to sleep without a fight.”

I interviewed Arlo many years ago on the radio, and naturally I’ve loved his music ever since I first hear that famous line, “You can get anything you want, at Alice’s Restaurant (excepting Alice).” He seemed like a nice, normal guy. He had a good chance of contracting Huntington’s disease, which killed his father, the legendary Woody Guthrie. As far as I know, it’s passed him by.

Woody once sang, “Dead or alive it’s a hard road.” ‘Nuff said for today.


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 Big C, a reality show . . .

This is the kind of post no blogger ever wants to write and these are the words that no person ever wants to find themselves saying: I have cancer.

Yep. The Big C. Liver cancer to be precise.

About fifteen or so years ago, I was diagnosed with Hepatitis C, a chronic virus that affects the liver. I have no idea how I got it. HVC is spread by blood-to-blood contact. I didn’t shoot up drugs, I had no transfusions or surgeries, and it’s doubtful I was infected from a sexual encounter. The one likely suspect I can come up with is a tattoo I got in the late 70s (maybe the needles were dirty), because once you’re infected it’s supposed to take HVC about 15-30 years to show up and then an additional 15-30 years for it to kill you. The tattoo fits the pattern.

Not that I have spent a great deal of time trying to figure it out. It’s like the story the Buddha told about the arrow. Does knowing who made the arrow that pierced you relieve the suffering?

The doctors told me at the time I had a very mild case and not to worry because any number of other things would probably get me before HVC did. Looks like they were wrong.

Last year, an MRI revealed some lesions on my liver. It’s taken them quite a while but finally they have diagnosed it as cancer and now, barring any unforeseen developments, I am on the fast track for treatment. Later this month I will go into the hospital for a day or so to receive an intra-arterial chemotherapy treatment which involves inserting a needle into the artery of my groin and placing a catheter there to supply drugs to cause the cancer cells to die. Sounds like real fun. I am so looking forward to it.

Needless to say, I probably won’t be blogging for a few days.

The good news is that it’s pretty much a one shot deal. If the chemo does a good job, they might repeat it again in a few months, but it won’t be a regimen I’ll have to go through like other chemo treatments.

Nor is it a cure, but it might stall the progress of the cancer and keep the tumor small enough so that I can qualify for a liver transplant, which will cure the cancer . . . but then the new liver will just get infected with the HVC virus, taking me back to where I was 15 years ago. A vicious cycle, but it beats death by a mile. Maybe two miles.

The Buddha taught that there is birth, old age, sickness, and death. This is the cycle of existence that no one can get out of and it is often characterized by suffering, usually of our own making. This is my suffering. I have skipped over the stages where I look for someone or something to blame, or questioned why me, and this I think has given me an advantage because the conquest of suffering begins when we accept the truth of suffering.

I believe, as Thich Nhat Hanh says, that “We should look at our suffering in such a way that the suffering can become a positive thing.”  In Japanese Buddhism, this is called hendoku-iyaku or “changing poison into medicine.” I don’t know what this positive thing, this medicine, will be yet, but I feel confident that in due time, it will manifest itself.

Fortunately, I have been able to keep my spirits up and have this wonderful sense of humor that has endeared me to millions world-wide to help see me through. I’m sure that in the days and weeks ahead I will have more to say about all this and perhaps I will be able to share the “medicine” that comes from this “poison” with you.

For today, I will close with more of the Thich Nhat Hanh quote. I find it inspiring.  I might note that when he says, “go to the Buddha,” he is referring to ‘going for refuge.’ But he is also speaking figuratively. To for refuge, to really go to the Buddha, you have to look within because that is the only place where true refuge and the Buddha can be found.

Thich Nhat Hanh:

The Buddha said that if you have not suffered, there is no way you can learn. If the Buddha has arrived at full enlightenment, that is just because he had suffered a lot. The suffering was the path that helped him to arrive at full enlightenment, at full compassion, at full understanding. If you want to go to the Buddha, you need your suffering . . .

Suffering is the path . . . By true suffering you can see the path of enlightenment, the path of compassion, the path of love. According to the teaching of the Buddha, it is by looking deeply into the nature of your sorrow, your pain, of your suffering, that you can discover the way out. If you have not suffered, you cannot go to the Buddha. You have no chance to touch peace, to touch love. It is exactly because of the fact that you have suffered, that now you have an opportunity to recognize the path leading to liberation, leading to love, leading to understanding.

Don’t be discouraged when you see that in the past you have suffered and you have made other people suffer. If we know how to handle the suffering, we will be able to profit from our suffering. It is like an organic gardener. If she knows how to handle the garbage, she will get a lot of compost for the growth of her vegetables and her flowers. It is with the compost of the suffering that we can nourish the flower of understanding, of peace, of love. That is why we have to learn how to manage our suffering, how to cherish our suffering, how to transform our suffering.”