Monthly Archives: December 2014

Dec 19, 2014: One Day at a Time

On December 9th, I received the third cycle of my current chemotherapy treatment protocol with the drug Doxil, as planned.  I had great hopes that this cycle of treatment would be easier than the previous two, as my body was now at least familiar with the drug and its side effects.  I was also feeling prepared and encouraged to be moving forward with more treatment.  As it turns out, however, an old adage that I have loved for a long time proved true in this situation — as it has in so many other situations in life.  And that adage is: “Man makes plans while the Gods laugh.”

Well, the Gods were certainly laughing this week.  36 hours after the infusion, I awoke with some of the most severe, intense bone pain that I have ever experienced.  Like really severe, 8-9 out of 10 bone pain, that felt like I’d been hit by a truck.  The pain persisted for several days, and required very high doses of narcotics and extra steroids to get under control.  My doctors’ explanations ranged from: “I have no idea why this is happening” … to: “This is a sign of an inflammatory reaction to the cancer cells dying in response to the chemo treatment.”  Slowly, slowly I’ve been doing my best to get though this painful period, as my wise and beloved uncle would say, one day at a time.  I’m feeling very thankful that over the past couple of days the pain is subsiding and I’ve been able to begin tapering off the high doses of medications.  But it has been an exhausting process, compounded by a deep, visceral fatigue and generalized aching that is often associated with Doxil.

Making matters only more challenging, the drugs seem to have exacerbated another rare condition that I’ve been dealing since the time of my initial cancer diagnosis — called achalasia — which can make it hard to swallow.  (I’ve mentioned this briefly, in a previous blog, and will perhaps write more about it another time.)  I underwent an upper endoscopy procedure for this on December 4th, with initially good results that seemed to dissipate after the chemo-induced pain and other symptoms kicked in after December 9th.  Sometimes, when it rains, it really does pour.

In this context, my life over the past ten days has slowed way down.  As at many other times on this long and winding road, I’ve once again been forced to take things one day at a time … doing my best to get through it all, and trying to remember that this is a process with unpredictable ups and downs.  It’s hard for me because there is so much I still want to do, and to write, and share — especially in this blog, and in a book of insights and lessons I have learned on the healing path, from so many perspectives, over the course of my life.  I long to be more active, and feel some semblance of being in control … and it’s just not possible right now.  It’s another reminder that I still have to slow down and allow the process to unfold, at its own pace  (“Focused action and intention, wrapped in the arms of surrender”).

I continue to learn more and more about embracing the great unknown at every step of the way on this journey.  It’s impossible to know what will happen next.  But I am still walking the path, as best as I can — and, right now — one day at a time.  

Thank you again for your love and prayers, and for your wonderfully kind, caring, and heartfelt comments on the blog.  They truly mean a lot!

Dec 7, 2014: The Chemotherapy Conundrum

This week (on December 9th, 2014), I will receive my third cycle of treatment with the chemotherapy drug Doxil.  It’s a powerful drug, and another step on the journey, for sure.  As I prepare myself for this experience — physically, mentally, emotionally, and spiritually — I am confronted with many questions that arise around the whole issue of chemotherapy; for myself personally, as for so many thousands of people who are facing this experience every day as part of their own cancer journeys.

There is a lot of controversy out there about chemotherapy.  I call it “The Chemotherapy Conundrum.”

In the conventional oncology world, chemotherapy is a mainstay of treatment; one of the “big three;” namely, chemotherapy, radiation, and surgery (along with newer, emerging genetically “targeted” therapies and immunotherapies.)   Unfortunately, most mainstream oncologists don’t see behind the horizons of conventional treatment, and —  beyond the standard chemotherapy, radiation, and surgery approaches — offer patients very little support for the other, often very troubling dimensions of the cancer experience.

In a parallel manner, in the alternative medicine world, chemotherapy is often considered to be not only highly toxic but even severely damaging to people; something to be avoided, even shunned.  There are countless alternative medicine clinics and websites offering astounding personal testimonials about supposed alternative cancer cures — which are, unfortunately, almost all unproven, for a variety of reasons, and are often based on very shaky, if not deeply dubious, rationale.  Nonetheless, when faced with a terminal cancer diagnosis, the promise of hope — any hope — can be compelling, even if it is misplaced.  Many alternative cancer practitioners deride conventional approaches as aggressively as their alternative approaches are ridiculed, in turn, by conventional practitioners.  This struggle is part of what I refer to as the “medical tower of babel.”  Many sincere and well-intentioned people who are working hard to care for patients with cancer cannot, or will not, learn each others’ languages and communicate on behalf of the patient.  In the struggle between their often radically different perspectives and beliefs, patients and families suffer greatly.

When you are a patient dealing with a cancer for which chemotherapy is recommended — and especially if the cancer is openly regarded as “incurable” with conventional treatment, including chemotherapy, as is mine — this creates a real conundrum.  Should you take chemotherapy, or not?  How do you decide?  Sometimes, the benefits are so clearly established, documented, recognized, and understood that the decision is easy.  But quite often, it is a very difficult, even agonizing decision.

In my case, after extensively reviewing the options available to me, I decided to include conventional chemotherapy as part of my overall, multidimensional treatment plan.  At least for now — I am continuing with this.

I must admit that my experience with chemotherapy so far has been very challenging.  In the spring of this year, I endured three months of a daily, oral, super-high-tech “targeted” therapy called pazopanib (aka Votrient).  It was a horrible experience.  I was plagued with daily nausea, fatigue, GI distress, weakness, and other side effects.  And, in the end, the cancer progressed.  It just didn’t work.  This was very disheartening, especially because the medical literature suggested that some patients with metastatic soft-tissue sarcomas not only tolerated this drug well, but had significant and even prolonged responses.

Then, over this past summer (July and August), I received three courses (6 infusions total) of treatment with two conventional IV chemo drugs, gemcitabine and taxotere.  Those drugs, too, were quite an awful experience.  Nonetheless, post-treatment scans at the end of August showed evidence of tumor response, which felt like a real victory.  Unfortunately, when I began the next round of treatment, in early September, my body completely rejected the gemcitabine, and I wound up in the hospital with a severe, unexplained adverse reaction.  Those days in the hospital, recovering from this reaction, were so awful and depressing that I seriously contemplated stopping all treatment and going on hospice.  Somehow, though, I recovered, and possibilities for next steps on the path once again began to open up.  As part of this, I was offered “third line” treatment with Doxil.  The statistics were again not very encouraging — but not without some potential merit, too.  And hopefully, Doxil would involve less toxicity than the previous drugs.

This brought me, once again, face-to-face with the chemotherapy conundrum: should I do it, or not?

After considerable, additional thought, the answer for me was “yes.”

The first two cycles of Doxil (in October and November) were tough, especially complicated by headaches and fatigue.  But follow up MRI scans of the spine, just a few weeks ago, again suggested strong evidence that the drug — along with everything else I am doing to try and heal and live through this ordeal — was helping.

And so, I will return for cycle #3 Doxil this week, and will see how it goes.

I have spent so much of my life — personally, and professionally — dealing with cancer in one way or another.  My father — and both of my grandmothers — died from cancer.  I built and for ten years directed an integrative cancer center, and cared for thousands of patients and their loved ones.  I have also walked the cancer path with numerous friends.  I have encountered “The Chemotherapy Conundrum” so many times, and in so many ways.  I know that cancer touches the lives of virtually everyone, in some way, so I know I am not alone.  Here are a few additional thoughts I would like to share about it (for now):

First, there are literally dozens of different chemotherapy drugs, and they work in completely different ways.  They also work differently for different people, with different cancers, different motivations, different levels of understanding, and in completely different overall life situations.  It makes no sense to lump all chemotherapy drugs together into a single bucket of “good” or bad.”   I have seen incredible benefits and results from chemotherapy.  At the same time, like so many others, I have also seen people almost destroyed by their toxic effects.

To me, a primary distinguishing factor in whether chemotherapy may be helpful or harmful, or wise or unwise for a particular patient, is the level of consciousness with which it is offered.  So much cancer treatment is based on fear.  Patients often feel rushed, and are not adequately prepared and supported to deal with what they are facing — let alone guided to make choices from love and understanding.  I’ve written about this in my book, The Journey Through Cancer: Healing and Transforming the Whole Person, and am amazed at how true and relevant it has been in my own experience as a patient.

The conventional, materialistic approach to cancer care ignores the essential truth that we are multidimensional beings — with a mind, heart, and spiritual dimension, as well as a physical body — and in my opinion this is absolutely tragic.  In doing so, profoundly helpful, powerful, and healing inner resources are overlooked that can truly make an enormous difference in a patients’ experience … and perhaps their outcome as well.

Finally, I have found that both conventional as well as alternative medical practitioners often fail to adequately and appropriately honor the great mystery that ultimately lies behind healing.  I think it is as misguided and damaging to reduce a patient to their statistics, their scan and pathology results, and now, ever-increasingly, to their cancer genome sequence … as it is to suggest that their diet, the alkalinity or acidity of their blood and urine pH, or which and how many supplements a day they may take, are what matters the most.  All of these factors (and more) should be considered — certainly in a multidimensional approach to care.  But in the end, approaching cancer with deep humility, compassion, and an honest appreciation for the fact that we cannot really predict, let alone know with certainty, what will ultimately contribute the most to an individual’s healing, can serve patients, and their loved ones, profoundly.

So, in this spirit, this week I will take my next step with chemotherapy on this mysterious journey.  Please keep me in your thoughts and prayers …

Dec 1, 2014: Focused Action and Intention … Wrapped in the Arms of Surrender

A number of years ago I gave a talk at a cancer conference in Washington, DC on a topic that has been a major focus of my life and work in oncology for many years.  The talk was on the model of whole-person cancer care — called The Seven Levels of Healing — that I first discovered and developed in 1993 and have been working with ever since This approach to multidimensional care is and has been very near and dear to my heart.  It articulates and demonstrates how it is possible to truly honor and care for every dimension of human beings, with clarity and precision — at the deepest levels of the body, mind, heart, and spirit — within the context of mainstream cancer care.  In a future blog, I will write more about The Seven Levels of Healing, particularly in light of my own personal cancer journey over the last several years.

At the end of the lecture on that particular day, I was interviewed by a journalist who asked me if I could summarize everything I had learned about The Seven Levels of Healing — and about healing in general … in a single sentence.  I had never been asked this before, and was stumped.  I asked her for a day to think it over and get back to her with an answer, and she agreed.

I went back to my hotel room and sat in meditation. I was deeply intrigued and inspired by her question, and was eager for an answer.

After some time in deep silence, the answer came in a flash of insight that has served me, and many others, ever since.

Now that I have been dealing directly with cancer as a patient myself, I increasingly recognize the deep truth and relevance of what I discovered that evening.

What I saw and understood in that moment of insight is this:

“The Essence of Healing is Found in Focused Action and Intention … Wrapped in the Arms of Surrender.”

This epiphany immediately rang so true to me, and it has guided much of life and work ever since.

As I have mentioned, one of my goals with this blog is to share and explore what I have learned about so many of the great paradoxes of life and healing.   The epiphany from that night so many years ago illustrates what I believe is one of the fundamental paradoxes of life and healing — and reveals what I regard as a profound and important truth about the essence of healing.

The paradox is that, in each moment in life, we must choose between knowing when to take action in our lives … when to focus our efforts and intentions to change the circumstances we find ourselves in … and when to accept what is happening and surrender to the truth of the moment, the truth of what is — knowing that, at least for now, we must simply surrender and let go.

This is especially true, and is so poignantly revealed, when dealing with a life-threatening illness like cancer.

When confronted with cancer, there is a deeply visceral, human instinct to do everything possible to heal, to “fix the problem,” and try to get well.  This includes searching for the drug, the doctor, the healer, the herb, the diet, the therapy, the protocol, the clinic that can save us.   We search and search, and are often willing to endure even the most extreme sacrifices — including an almost limitless array of tests, scans, surgeries, procedures, drugs, chemotherapy, radiation, and myriad types of alternative healing modalities — to find a way to live.  We are often inundated by friends and colleagues with countless suggestions of things to “do,” therapies to try, places to go, and opinions about what is best.

This instinct towards seemingly endless action in the effort to heal is completely understandable.  I have certainly felt it deeply in my own experience with cancer — not to mention in my experience with so many patients I’ve cared for over so many years, and what I’ve seen my own family members and friends go through in their own cancer journeys as well.

But there are problems and limitations with this kind of single-minded, action-oriented approach.

The first problem, of course is that — at the end of the day — there is absolutely no guarantee whatsoever that any particular therapy or healing modality of any kind will work.  They certainly may, but there are no guarantees.  Even more distressing is that — especially with serious, advanced cancers — many, if not most, of the therapies will ultimately not work, or be curative, let alone be truly healing at the deepest levels.  Unfortunately, our level of skill and understanding of cancer is just not there yet.  And, if a particular approach does “work,” or seem to work, we often soon encounter new problems, or experience a variety of side effects, toxicities, or a new and different set of issues to deal with. This is a hallmark of the relative, ever-changing nature of medicine … and human existence itself.

A second problem with this kind of approach — which is especially implicit in the conventional medical model of treating disease, and especially cancer — is that being in a constant state of searching, and making efforts and trying to do everything possible to “find the answer,” can not only be exhausting, but counterproductive.

In my experience, it is impossible to truly heal when constantly in stress — let alone being “at war” with whatever is going on in your body, or your life.

I have found that it is most helpful and productive to make every effort possible to heal and get well — even fighting really hard — while wrapping your efforts, in every moment, and to the fullest degree possible, in the arms of surrender.  I believe this balance is where the deepest essence of healing is truly found.

By “surrender,” I do not mean being passive, or hopeless, or accepting defeat.

I am talking about a deeper recognition of the futility of making constant effort to exert one’s will in the world of outer affairs, or on the inner realities of what is happening with the body.  I am referring to making room, deep in one’s heart, soul, and being, for what is simply true and present in the moment, and accepting it — as fully as possible.  I am also talking about making room deep inside to honor the great Mystery that ultimately lies behind who gets well, who doesn’t, who lives, who dies … and when.  Embracing this Mystery, as fully and consciously as possible — even in the midst of a tectonic cancer battle — transforms the whole experience.  It adds a vital and precious quality of humility to the entire process.  It helps dissolve the illusion of separation, and the illusion of control.  It can also open otherwise hidden, inner doorways to supreme grace, unexpected blessings — and perhaps even profound physical as well as mental, emotional, and spiritual healing — that might otherwise be missed.

It seems to me that a deep path of mastery in life, and the healing path as well, is to be quiet enough on the inside to be able to listen for and hear the whispers of one’s deepest inner wisdom.  This quiet inner wisdom, when truly honored and respected, may in one moment quite clearly speak to you and say, “focus now, get clear on your deepest intention, and take action.”  And yet, in the very next moment this very same inner wisdom may say, “surrender now, let go, rest, trust that you are being guided, and let go.”  It is also a calling to try to make your choices and decisions based on love, rather than fear.

The way forward is to become quiet enough on the inside to be able to hear, and distinguish, between these two imperatives that lie within us all … and which can move and change from moment to moment.

There is a profound experience of freedom and opening that comes when our actions and intentions are fully wrapped, in every moment, in the arms of surrender.  This opening can lead to some of the greatest gifts imaginable.  But we have to be willing to listen, to surrender, and to let go — as well as focus our intentions and take action.

I am going through this exact process and inquiry right now in my own journey, perhaps more directly than ever before.  I have just completed a seventh round of difficult stereotactic radiation treatments … after having already undergone so many scans, tests, different regimens of chemotherapy, consultations, and deep exploration of many other healing modalities — none of which offer any guarantees or assurances at all.  Right now, I am waiting to resume treatment with more chemotherapy, hopefully in about week.  In the meantime, I have absolutely no idea what will happen as a result of the next round of treatments, let alone from all the efforts I have already made to get this far.  I have no idea how I, or my body, or my cancer, will respond, or what lies ahead.  While preparing once again to “take action,” I must continue to surrender to the unknown.

I am not saying that I have mastered this moment-to-moment acceptance of what is, or surrendered fully to the great Mystery of life, death, and the unknown twists and turns that lie ahead.  It has been very hard at times for me to let go of the human longing for certainty, control, and the impulse to keep making efforts and moving forward.  At times, I’ve struggled with incredibly deep feelings of sadness, loss, and fear, even though — despite what conventional medical statistics may suggest — the fire of life, the desire to heal and live, and the belief that it is, indeed, possible, remain strong in my heart.

Regardless, though, this profound insight of wrapping my actions and intentions in the arms of surrender is the truth to which I aspire in my life.  It guides my journey as I continue to face and deal with the difficult choices and challenges I continue to encounter as the path unfolds.

Thank you for your willingness to share this journey with me, especially on this blog, since it is so hard to stay connected in person right now.  Thank you also, once again, for your love, prayers, and heartfelt good wishes; and for your presence in my life.  They are a great gift to me!