NEW SHOES

 “Maybe you have to know the darkness before you can appreciate the light.”

                                                                                                                   ~Madeline L’Engle

In order to rise from its own ashes, a phoenix first must burn.” ~Octavia E. Butler 

     It’s been two years since my cancer diagnosis and one might assume, especially if you’ve followed this entire blog, that I would have rapidly and gleefully shed the dark cloak of illness and rushed headlong into the joy that is life.  My transition back to “real life” following breast cancer, after all, while not exactly easy, had been steady and relatively smooth.  Not so this go-around.  In fact, these past months have been fraught with pitfalls and places that kept me stuck.  Looking back, though, the snares and times when it felt as though I was mired in quicksand have served to keep me still and focused.  I was compelled to review my past and, in doing so, came to realize that, like a dragonfly who flits across the surface of a pond, I too had been skimming, ever so lightly, over the surface of my life.  In an effort to avoid entanglements and intimacy with both people and experiences, I had succeeded in keeping deep commitment and passion out of my life.  So whereas some people develop their capacity to feel deeply, I had found a way to stay somewhat sedated and a tad numb, without the aid of alcohol or pharmaceuticals (although, as many of my readers know, I tried to achieve results with these as well!).  I thought that I was content, whereas I was just coasting, keeping emotional involvement at bay.  Wasting away in Margaritaville…without the margaritas.

     And then came the tsunami that was oropharyngeal cancer and the torrent of terror it brought with it.  I spent the year so heavily medicated that thinking beyond the moment was a huge challenge.  That, in my view, was a blessing and allowed me to feel, rather than think.  And I did feel everything ranging from panic and despair to immense gratitude and love for those who were carrying me when I couldn’t even put one foot in front of the other (literally!).  And as that first year came to an end and I gradually needed the pain medication less and less, until I no longer needed it at all, I was left feeling completely wrung out and empty.  There was no energy, neither physical nor emotional, with which to navigate.  Thinking was just too much effort.  I put whatever slight drive I had into my job which, of course, had to be done.  Beyond that, I felt listless and completely unmotivated.  I spent my time reading mountains of books and watching hours of Netflix sagas and films from every known corner of the earth.  But I couldn’t move and had no desire to do so.  It was difficult to contemplate even a run to the grocery store and I would put that off until I was nearly out of food.  Whenever I guilted myself into making plans with friends, I would dread it for days and devise schemes to get out of whatever was planned.  The idea of a long trip, or any trip at all, terrified and exhausted me.  Whereas my pre-cancer life had felt like a mindless meandering, this post-illness period felt as though I was stuck in concrete.

    Now, two years later, I am here and I’m waking up, emerging from the nightmare.  The emotional pot is beginning to bubble and I’m finding so many small moments of wonder and gratitude.  I’m even detecting sparks of renewed interest in doing the simplest things, like pickling vegetables and sewing a winter poncho, and have been taking kickboxing classes again.  Even more exciting is the strong desire to teach yoga again and, to that end, I’ve found a smart and compassionate teacher for a 100-hour mentorship in yoga therapy.  I am returning to the fold, to the sangha, and want to share with others the practice that I, personally, have found to be so healing.  The painfully-acquired lessons of cancer, I now realize, have settled in me like a deep well of wisdom that can only expand and grow.  And what should one do with the gift of wisdom besides share it?  Nothing else.  That is what it is for.

     This is my final blog post in this chapter of my lifelong journey.  The other shoe dropped, but I’m still here, stronger and wiser and ready for brand new shoes.  I’m hoping that my next connection with readers will be via my upcoming website, “Wisdom Well: The Yogic Path for Healthy Aging.” It is planned to launch in the Spring of 2019. So stay tuned!  Oh, and here’s a pic of my new shoes…

MOVING ON                                                           31DEC2017

 

“The root of suffering is resisting the certainty that no matter what the circumstances, uncertainty is all we truly have.”  ~Pema Chodrun

“The quality of your life is in direct proportion to the amount of uncertainty you can comfortably deal with.”  ~Tony Robbins

 

It would be so neat and tidy to be able to wrap up this blog, which documents my most recent cancer struggle, by crowing about my return to health and by claiming to, finally, feel confident that I am cancer-free and expect to remain so. I would resolutely and with great determination, declare myself “back to normal” and hell-bent on embracing behaviors that will keep me in optimum health. Ta-dah! The End.

Well, neat and tidy has never been my preferred path since such a way seems both shallow and deceptive, hiding all of the shades and flavors and, yes, the messiness of what I perceive to be reality. It also obscures the truth that neat & tidy can only be a temporary state and, therefore, cannot be relied upon. So unknowing triumphs and, for me, resonates closer to truth. Rather than being sure that my body houses no creeping, morphing, potentially lethal cells, I will say that, as far as I know, the cancer is, for now, gone. Whether it is lurking, ever returns or is replaced by another life-threatening illness is not something that needs to be contemplated today because, in this moment, it doesn’t matter a whit. What does matter now, today, is that I feel gloriously alive and deeply content. I am certain of my direction and can hear, loud and clear, the urgings of my heart. And I am extraordinarily grateful- grateful for life itself, for new eyes and ears, as well as for what is, I think, a modicum of wisdom. Most of all, though, I am grateful for loved ones in my life and the ongoing opportunity to savor them and to love them back.

It’s time to move on now, to close this brief journal and let it stand as what it was intended to be- an account of one important chapter in my emotional and spiritual journey, written with the hope that readers, at least one or two of them, will be moved by my words and, perhaps, inspired or supported by them. All that we can ever hope to do in this life, I believe, is to walk with one another for a time and offer a bit of encouragement along the way. I hope that this blog has succeeded in doing that for someone.

So while I go forward into 2018, I’ll remember 2016 as a year filled with shock, terror, despair and sadness, while 2017 was dedicated to an emerging from hell and then taking deep rest. This next, new year will begin with a hope for even greater transformation and a determination to try to live a life guided by the lessons I have learned. The next chapter, then, will most fittingly be entitled, “New Shoes.” I look forward to sharing what evolves…

BROKEN OPEN

Our birth is but a sleep and a forgetting:

The Soul that rises with

us, our life’s Star,

Hath elsewhere had

its setting,

And cometh from afar.

       ~William Wordsworth

I have just finished reading a book called “Broken Open.”  It may save my soul.  It points me back to the Anais Nin quote that I chose for this blog’s header:  “And the time came when the risk to remain tight in the bud was more painful than the risk it took to bloom.”  It is as though, having chosen this quote, I knew, without consciously knowing, how difficult, but transformative, this process was to be.  I had no idea, when this second cancer journey began, that in addition to having a fierce battle ahead, I was to find myself in dire need of a complete surrender to all that was, is and will be.  Learning, as I did, that most of life, really and truly, is absolutely out of my control has proven to be a hard won but, ultimately, most valuable lesson.  Without complete surrender to this truism, I know that I cannot go forward.  Although many, including me, have frequently reminded themselves that we cannot control everything, I am convinced that most of us still have held tightly to an unacknowledged belief that we can influence most of what happens to us through either good behavior, prayer, a “positive attitude,” superstitious practices, or any number of manipulations we go through to ensure desired outcomes and to banish “bad luck.”  But here is the truth for all of us, I have come to believe:  we control only the most minimal of what occurs in our lives and can take no credit or blame for outcomes.  We do the best we can and hold fast to the hope that all will go well.  And for the most part, it does…until it doesn’t.  Since humans have an inexhaustible capacity for denial, this course seems to hold up well and we can even convince ourselves that such evils as violence, illness and death need not be considered very seriously.  But then, for some of us, something does happen – the other shoe does drop – and we come face-to-face with the reality that life can be almost unbearably painful and, in the end, we will most certainly die.  This, of course, sounds terribly dismal, but it really is not because that isn’t our only lesson.  If we are courageous and open and we listen very closely, we also learn how to live contentedly and joyously.

     A few months into my recovery, as I began to scrape together the pieces of my shattered life, I found myself filled with dark, heavy emotions.  I became excessively fearful of the future and even of the present and felt compelled to isolate, cutting myself off from others and from activities I had previously relished.  The more isolated I became, the sadder and more depressed I felt. I obsessed about aging, physical and mental decline and death, seeking answers to the unknowable, with questions such as what death feels like and whether mine will be painful and lonely.  I grappled with the more existential questions regarding afterlife and post-death consciousness.  All to no avail, of course.  Because what I was actually seeking, in wanting to know these answers, was control over what is to come.  And so, from the most mundane endeavor such as driving and needing assurance that I wouldn’t break down or have an accident, to the weightier issues like wanting to know, without any doubt, that my cancer wouldn’t recur, I cowered in fear and sought a guarantee, an affirmation, that nothing “bad” would ever again befall me.  Until I received that assurance, I felt paralyzed, unable to venture out, to move forward.  I was really stuck. 

     Fortunately, however, two means of salvation appeared.  First, I happened upon the aforementioned book that explores a variety of instances where tragedy in a person’s life triggers great self-discovery and transformation.  The second form of rescue occurred as I became increasingly aware of all the love in my life, as well as the great beauty, compassion and kindness that surrounds all of us, every day.  The people who supported me during my illness did not desert me once I began to recover but, rather, continued to let me know that they love me and are still there for me.  This, at first, surprised me and, then, it brought me much comfort, joy and gratitude. Through past experiences, I had developed an expectation of abandonment, but I came to see that that was merely an empty fear that held no truth. 

     The more that my eyes opened to the love that abounds, the better able I was to see that much of the world’s suffering stems from the inability to accept that every single person, at the core, merely wants to be loved and accepted. It became evident to me that if we each take responsibility for acting on that premise and, therefore, spreading whatever love and compassion we can, our impact can be great and our lives can be made even more worthwhile and meaningful.  Our suffering, then, is a result of our fears and insecurities which cause us to strike first and to wear an impenetrable suit of armor at all times.  We cannot see and accept that we are all part of the giant human mosaic, with no one individual exempt from pain, but also not incapable of giving and receiving love.

     On a more personal level, I came to realize that all of my fears and strong urges to isolate and remain inert stemmed from my feelings of powerlessness.  I had come to realize that I have no control over just about everything and this terrified me.  Yet it was abundantly clear and confronting this nearly paralyzed me.  After all, within only one year, I had lost my job, my oldest sister, my beloved cat, and I was diagnosed with one of the most challenging of cancers.  How much more evidence did I need?  I was, clearly, not in control.

     What does one do in the face of this realization which, I believe, we must all come to if we are to live contented, meaningful lives?  The choice seems apparent:  we either continue fighting, thus tightening our self-imposed noose, or we surrender and accept uncertainty.  I chose the latter.  If this sounds dreary, I’ll argue that it isn’t at all but, rather, this acceptance brings a great sense of relief.  After all, it is the truth I’ve been struggling against my entire life, so giving up that struggle is like being given permission to breathe freely again.  There is an additional truth that is revealed once one accepts life’s constant uncertainty and that is that although other people, events and circumstances are always in flux, our deepest self, our very essence, remains steady and eternal.  That is, once I saw that I had no control over what is outside myself, I could rely upon my deep reserve of self, a reserve that I believe was born of and is always connected to a universal spirit, to guide me.

     As I enter my seventh month of recovery from cancer, I can almost say that it has blessed me.  But, as wise as I seem to be becoming, I am not quite at a point where I can be grateful for every learning opportunity, especially one as brutal and as challenging as this one has been.  Still, however, I cannot truthfully say that I wish I could return to who I was last summer, before I was diagnosed.  Though I may have seemed more innocent and more carefree then, I was, instead, merely holding tight to the naïve hope that nothing would ever radically change in my life, that it would amble along in familiarity and ordinariness, with challenge (and growth) at a minimum.  I can see now that I was remaining “tight in the bud,” terrified of change and of losing control.  No, I don’t think that I would like to return there.  Instead, I’ll take my chances with life as it really is, ever-changing and full of new experiences.  And I’ll listen much more closely to that inner voice when it comes to navigating these experiences.  It is the way of wisdom and truth, rather than the path that is numbing and leaves one cowering in fear and missing out on the all that can bring real joy.

Elizabeth Lesser describes the process and result of being “broken open” this way:

“Everything can change in a moment; we have little control over the outer weather patterns as we make our way through the landscape of a life. But we can become masters of the inner landscape.  We can use what happens on the outside to change the way we function on the inside.  This is the moral of the great teaching myths.  The hero conquers a monster; the heroine completes a quest; the reward at the end was there all along –  the true self, the awakened consciousness…As life progresses and we continue to transform and refine our consciousness, we gain more insight and humility, greater strength of character, and deeper faith in the meaningfulness of life.”

Yes, I’ll take the path that is mine.

“In the depth of winter, I finally learned that within me, there lay an invincible summer.”

~Albert Camus

Really God??!

     Although it seems that a Catholic school upbringing has tainted many a young person’s view of the Deity, I, for whatever reason, never bought into an image of a punishing, revengeful God.  In fact, I never thought of God as anything but a caring, loving Super-Being who only wanted the best for me.  And by and large, the circumstances of my life bore this out. I have had a great deal of “luck” and good things have always come my way, from having been raised within a loving family to having had access to a good education and employment opportunities.  I just couldn’t complain, although having seen myself as especially entitled, I certainly did.  Even having breast cancer didn’t shake my confidence in my everlasting good luck. Sure, it was unfortunate, but so many people I knew had also been diagnosed and, so, I didn’t feel at all persecuted or singled out.  In fact, I felt almost fortunate in that I suddenly acquired a new attitude and a new direction and, thus, was extremely grateful.  To be completely honest, breast cancer introduced me to a whole world of wonderful women doing kind and generous deeds and persuaded me that I could be one of those women. It was all quite positive and I even felt what one might call “blessed.”

     Until July 2016 and the day that I was diagnosed with head and neck cancer and told that I must undergo a long, brutal treatment process in order to survive.  To say that I was shocked is, truly, an understatement.  In one moment, I felt my life go from a very lucky and mostly pleasant existence to one of fear, darkness and utter confusion.  And I felt betrayed…betrayed by this all-loving God who had been my support for a half-decade.  I was devastated.

     So it was that throughout the painful, arduous treatment process, I sought some means of reconciling these feelings.  I tried to rationalize the situation, telling myself that “it could be a lot worse.”  I looked for comfort in a belief that the cancer was a “gift” that would allow me to help others similarly stricken through teaching yoga and meditation and by offering my support and comfort.  I even resorted to an attempt to view the experience as an opportunity for personal growth.  Now I don’t think that these considerations are false or foolish but, rather, I believe that they are correct and true.  Unfortunately, however, believing these thoughts did not impact my sense of betrayal, my feelings of anger or my self-pity.  I tried, repeatedly, to rationalize these away, but they held tight and kept me stuck.  Eventually, as I finished treatment and looked forward to some recovery, I became more capable of quieting the demons and even ignoring them.  But they did not retreat; they only laid dormant.

     Fast-forwarding to today, 4 months post-treatment, and I’m beginning to realize that several recent attempts to address the stuck feelings are actually beginning to modify them and might even result, eventually, in their resolution.

     So what has been helpful?  First of all, acknowledging and then talking about the feelings with a few very trustworthy friends has, most certainly, been healing.  I had been stuffing these emotions and even denying them and, so, they had remained stuck.  Just putting the negative  feelings into words seemed to make them a bit lighter.  Upon doing so, one dear friend advised me to be patient with myself and to “leave room for grace.”  This turned out to be one of the most beneficial pieces of advice I received.  Still, it took a great deal of effort to put this into practice.  Patience and surrendering control have never been my fortes and I had to bring to mind this advice many times over.  When I did, I always experienced a sense of ease.  The advice helped too when I consciously attempted to sit with the feelings, to really feel them and not run away.  Slowly, they began to lose power and, especially, to seem less shameful – more acceptable.

     Another opportunity to heal came to me, rather randomly, while watching an old television series.  The character on the show was experiencing some hard luck and when she finally weathered the difficulties, she explained to another character that she came through successfully by realizing, simply, that bad things happen to everyone and that no one is exempt.  Hearing this was like being knocked in the head and, in a flash, the truth of it was evident to me and, more importantly, it was immensely comforting.  I ceased feeling so alone and “chosen” for disaster.

     Finally, I come back to Paul, my dear companion throughout this recent hell.  Prior to my diagnosis, in all the years that I’ve known him, as well as throughout the entire ordeal, he has role-modeled acceptance.  In his own life, he takes things as they come and I have never heard him express self-pity or the belief that he has been singled out or is being persecuted.  And he is so certain in this conviction that I have been compelled to examine its applicability to my own circumstance.  In doing so, I have realized the truth…that we each are given challenges we must either embrace or endure in order to move forward and to grow and that no one person’s hardships are meted out as punishment or retribution.  It seems, rather, that the difficulties we encounter are merely some among many and we are called to confront them, incorporate their lessons, and move beyond.

     I cannot conclude without acknowledging what appears to be the power of prayer.  Since my diagnosis, family, friends, co-workers and even an entire monastery of monks in upstate New York prayed for me.  In light of this, how can I possibly consider myself unlucky or abandoned by the Great Universal Spirit that many of us call God?

     I am breathing easier today, as I feel myself letting go of the unproductive and stifling feelings and embracing the freedom.  And I am grateful…to all of my teachers.

A NEW DANCE

“Hope is being able to see that there is light despite all of the darkness.”   ~Desmond Tutu

 

     I first danced with NED in September of 2005 when my surgeon assured me that he had successfully removed all of the cancer in my left breast.  I had already completed 8 rounds of chemotherapy and was still to receive 36 radiation treatments, just for insurance, but the cancer had been cut out and there was No Evidence of Disease (NED).  And so I danced.  My world view had radically changed as a result of the cancer experience and I was truly filled with joy.  After a lifetime of cynicism and negativity, everything suddenly appeared rosy and all things were possible.  Most surprising, to me, was the discovery that people were actually good and kind and caring.  I would come to say that although I would never have chosen to have had cancer, I was grateful for its gifts.  And, of course, I also assumed that I had paid my dues and that, therefore, no cancer or other life-threatening illness or event would ever darken my door again.  Yes, I lived on the proverbial pink cloud and assumed that only good things would come my way and that I was, surely, entitled to them. 

     Fast forward to August of 2016.  I was having what I thought was an unusually bad year, one that followed the year that I lost my oldest sister.  My beautiful, beloved cat, Sasha, passed away after a painful and distressing illness, my home air conditioning system broke down and cost a great deal of money to replace, and  events had multiplied to make me think that I was, indeed, going through quite a bad patch.  Life began to feel, suspiciously, negative and not at all cooperative.  That sense of waiting for the other shoe to drop, heretofore buried deep and largely ignored, began to creep into my subconscious.  And then the lump emerged, large enough to preclude ignoring it.  The music, and thus the dance, abruptly stopped and NED exited.

     There is no sugar-coating the experience of this cancer.  It was barbaric and extremely painful.  I almost died.  But I didn’t and, day after day, my dear Paul stood by me, throughout the twice-daily radiation treatments and the chemotherapies and IV hydrations.  And finally, after 2 months and 70+ treatments, it was over and recovery could begin.

     It became immediately clear to me that the landscape had changed.  Having come that close to death afforded me the opportunity to really look at not only my own mortality but, more importantly, my own life and how I wanted to live that life, going forward. 

     Once I learned, on January 17^th, that there was “no evidence of disease,” a brand new NED stepped up to dance and “he,” this time, was almost unrecognizable.  Whereas the previous “dance with NED” was characterized by a lighthearted confidence that my worries were over and I was entitled to a good life, one free of troubles and, certainly, of disasters, this new dance would, clearly, be more complex, more nuanced and, yes, more realistic.  What brings me joy and what gives my life meaning came into sharp relief and the need to fully participate in the creation of my life became pressing.  That is, rather than assuming all that is good would just come my way because I deserved it, I saw that living a full, joy-filled life can only happen if I’m willing to actively embrace and actively pursue what will be fulfilling and what would allow me to live with integrity and compassion.  And in order to do that, I needed to start with focusing on present moments.  Whether cancer or some other disaster is in the offing is pretty much irrelevant to the now moment when that disastrous event has not yet occurred.  And if I spend my time ruminating about catastrophic possibilities, then I completely lose the present and am left with nothing but imaginings.  That won’t do.  This is not to say that it is easy to stay in the moment, especially after having one’s innocence and trust ripped away but, rather, that it is absolutely necessary if one is to find any peace, any serenity.  Prior to the full weight of cancer descending upon me, I had been in the process of honing my stay-in-the-moment skills through the regular practice of both meditation and yoga and, additionally, by surrounding myself with people, readings, events and other stimuli that encouraged such an approach to daily life.  But the horror of the illness temporarily stripped me of the desire to remain present.  In fact, the present moments became the last place I wanted to be and, so, escape through sleep, stories and anything outside of my current reality became my coping mechanisms.  I honestly did try, on quite a few occasions, to take a mindfulness-based approach to my illness and even read several very encouraging books about how to accomplish that but, in the end, I was simply too afraid and too sick and exhausted.  Fantasy and even bad TV won out over sitting with my reality. 

     But that is over and I know that my daily reality, going forward, is very much up to my choosing.  So it’s back to my zafu and my mat and all of the things that support my being mindful and deliberate.  I’m pretty sure, however, that some creative imaginings and maybe even some bad TV will still be part of the landscape.  But if these bring me pleasure, I will embrace them and be grateful for them too.

     I am compelled to add one final clarification regarding this new dance and that is that it will probably never be free of fear and worry about more cancer or another catastrophe.  I know that I will never again enjoy that naive and carefree attitude that was part of my between-cancers life.  I’m afraid that I will always be aware that there is an endless supply of shoes that can be dropped. But I won’t be looking at these shoes too closely and will, in fact, put much effort into completely ignoring them…because they are not part of my today.  Given that, then, I won’t be going forward with great courage and certainly not with any naiveté but, rather, with strong determination that, despite all of the possible disasters that could befall me, each day will be lived fully and, hopefully, with much gratitude and even a modicum of joy.

    

ARRIVING AT GRATITUDE

“Let gratitude be the pillow upon which you kneel to say your nightly prayer. And let faith be the bridge you build to overcome evil and welcome good.”    ~Maya Angelou

“Acknowledging the good that you already have in your life is the foundation for all abundance.”  ~Eckhart Tolle

 

     Post-treatment has been full of ups and downs and mostly, at first, downs.  With no substantial advice or support for getting back to optimum health and with the nagging fear that my January 17^th PET scan would reveal more cancer, I found myself feeling very alone and floundering.  I lost more weight and was constantly lightheaded with severe stomach pains from what I assume was hunger.  I stopped using the feeding tube, but still drank only nutritional supplements.  More weight loss.  Finally, I began to feel both frustrated and depressed and knew that I needed to do something.  A doctor’s appointment was looming and I knew that he wouldn’t be pleased with my lack of progress.

     It was the week before Christmas when I felt a surge of hope, accompanied by a determination to move forward. I bought some breakfast cereal and some cottage cheese and found a recipe for rice and lentils that sounded palatable.  I even read on a message board that several people who were succeeding in their effort to bring solid foods back into their diets had found success with eating fried rice, so I ran right out to my local Asian restaurant and gave that a shot.  On Christmas Day, I successfully ate potatoes and slaw and I began to feel as though I had crossed a threshold.  Food still tasted awful and my throat was still extremely sore, so swallowing was difficult.  But I took it slowly and ate frequent, very small meals.  The bulk of my diet was still (and remains) liquid supplements but I began, incrementally, to add solid foods.  Having the feeding tube removed felt like a real turning point.  It was so liberating to not have all of that equipment protruding from the front of me and most satisfying to look down and see a flat, “normal” belly.  I finally began to see some real light at the end of the tunnel.

     Still, I couldn’t seem to shake the vague feeling of depression, nor conquer the feeling of having been severely traumatized.  As 2016 came to a close, I looked back and, at first, saw only the terrifying events and experiences that had left deep, serious scars.  But the optimist in me couldn’t accept that negative view and, almost overnight, simply rebelled.  After a deeply satisfying visit with my daughter, a long talk with a very dear friend, and an online survey of the coping mechanisms employed by other head and neck cancer survivors, I suddenly realized what was missing.  Yes, it was gratitude.  As bad as I had been feeling, I saw that there were so many others who had been through much tougher treatments under much more challenging circumstances. Some had had unimaginably grueling procedures and been left with permanent limitations. Others had no close family or friends.  Some had serious financial difficulties that limited their options, while others were simply unable to cope.  Yet these people were posting about their challenges and offering support and encouragement to others.  And many maintained upbeat attitudes throughout, despite what they had been through.  I was irresistibly moved to count my blessings and suddenly saw that there is a great deal of hope for me and my future.  After all, I reminded myself, the doctors and nurses were assuming I would be cured of this cancer.  If that had been an unlikely outcome, they would not have offered it or maintained it.

     So where am I today, the first day of 2017?  I am reminding myself of the many blessings in my life, from my amazing and wholly supportive daughter, to my huge source of love and support, Paul, to my very special women friends, JR and Nancy, to my engaged and loving sisters.  I am blessed, in addition, with supportive co-workers, a fabulous and highly talented medical team, and a community of extraordinary women who would do anything for me.  And, finally, I am blessed with enough physical and mental health to be capable of setting goals that are achievable, the primary one being a return to full health and fitness.  I realize that the achievement of this goal will take some time and that I need to be compassionate and patient with myself, but I am willing to make that effort.  Daily practices, like meditation and yoga, well thought-out and well-timed meals, and learning to listen to my gut and follow its direction will, I am convinced, further the goal. 

     I am, finally, seeing the good, steady light at the end of the tunnel and, for that, I am extremely grateful.

MONSTERS UNDER THE BED

Just when I expected to start feeling better – physically in less distress and, mentally, seeing the light at the end of the tunnel – everything seemed to fall apart and I, instead, began to feel buried under an impossibly heavy pile of emotional debris.  That the debris consisted, essentially, of fear…no, sheer terror…made it seem that much more formidable.  I began to feel engulfed by an evil that is irrational and it sought to edge out all other feelings, including and especially, my most treasured sense of hope.  Since I consider myself that type of person who always makes lemonade, this new experience was terribly discouraging. I felt as though I had been stripped of my very Self and had been left irrational, weak, fearful and ineffective.  Truly, I felt helpless and as though I were sinking, by the day, deeper into some quagmire. I obsessed about the upcoming PET/CT scan in January, certain that it would reveal more  cancer.  I ruminated and bashed myself over the tube feedings, convincing myself that I was deteriorating from lack of substantial calories and nutrients and certain to die a painful death from malnutrition.  I read a few online posts (always a mistake!) from people who couldn’t eat solid foods months and months after the end of treatment and I became convinced that I was one of them and would probably never eat real, whole foods again.  These thoughts and feelings were so uncharacteristic of me that just merely observing them exacerbated my sense of alienation and doom.  Who was this crazy woman thinking these crazy thoughts?!

As it began to seem as though nothing about this unfamiliar state would change or, if it did, it would become worse, a flicker of what I could only identify as “common sense,” or rationality, emerged.  At first, this small sense of hope was really only a tiny spark but then, as I (coincidentally?) happened upon various inspirational writings or media-driven discussions that seemed to be advising me on how to process these difficult thoughts and feelings, I started to see a palpable light at the end of the tunnel and the panic actually began to subside.

This new mindset counseled me to approach what I had come to refer to as “crazy thinking” in several ways.  First (and I credit my guided meditation guru, Belleruth Naparstek, with this idea), I was to face the fears, looking at them head-on and acknowledging each and every nuance of them, no matter how wacky or how much I wanted to look away.  It was helpful, at this point, to ask the question: is this thought likely to be true or have a basis in reality?  Specifically, is it possible that my PET/CT would show cancer? Yes. Is it likely that it will? No.  The statistics, with my cancer’s profile and the specific treatments employed to eradicate it, showed a strong likelihood of an actual cure, even though refractory or failed cases do occur.  But the odds are, really and truly, overwhelmingly in favor of resolution.  This is also that case in the question of returning to the relatively normal eating of solid foods.  Although failure to get back to regular feedings does happen, it is relatively rare and certainly not expected. Rather, it is likely that I will, eventually, return to eating normally and having very few, if any, limitations.

Where did this train of thought lead me?  It has led me to a place that I, at first, couldn’t even imagine – a place of hope and increasing zest for life.  I suppose that it could be said that the awful fears that possessed me a week or so ago indicated that I was experiencing a sort of PTSD-like depression, but since I’ve had no prior experience with that emotional state, I am not certain that that is what it is/was.  But whatever it was, it came on suddenly and caused me to feel truly powerless.  It engulfed me and threatened to swallow me, sending me to the depths of hopelessness, despair and, most painfully, buried under a terrible, dark fear.  But then, as my past experiences have shown me, my higher power, or my God (or serendipity, if you wish), stepped in at the crucial moment and showed me a distant light, a flicker of hope.  And as soon as I grabbed that offering, I became flooded with this hope and knew that, no matter how things progress, I will be given the proper tools to handle the situation.  This isn’t to say that my fears are gone. They are not.  But thanks to much practice and encouragement from those wiser than I am, I can stop the “crazy thoughts” when they begin to threaten and just stay right in the immediate moment, refusing to entertain terrifying, unsubstantiated thoughts and examining only what  I know and feel in the NOW.  I am hopeful that I will continue in this vein, no matter what transpires over the next months or years.

So, just as in the case of a child’s vivid imaginings of monsters under the bed, the evil must be exposed and looked squarely in the eye, in order for it to lose its power.  I had to really sit with my fears, acknowledge them, and examine their strength before discovering that they really only have the power that I allow them to have. Having a regular meditation practice has been an enormous help in that I am familiar with facing uncomfortable emotions and not denying or hiding from them.  It also encourages me, over and over, to stay in the present moment and this practice is, truly, indispensable when attempting to disarm fears and other concocted demons.

KNOCKED FOR A LOOP

“Whew, now you can get back to normal.”

“It’s time to snap out of it.”

“You should be grateful.”

“It’s in the past. Leave it there.”

Stop wallowing. Move on.”

These are just a few examples of messages that cancer survivors hear from friends and family once treatment is complete.  Our loved ones are, understandably, relieved that we are still around and that we appear to be on the road to recovery.  They are often dismayed, then, to find us irritable, depressed and rather uncooperative.  For them, the ordeal is finally over and we now can get on with our lives. What they don’t get, at all, is that cancer is never really “over” and that a return to “normal” will never be possible because it, simply, no longer exists.  Our very Selves have been radically transformed and, therefore, can never be resurrected.  Nothing, in fact, will ever the same again.  Normal just has no meaning. We are, of course, greatly relieved that the acute phase of our cancer journey appears to be over (though we will never be sure of even that), but simply slipping back into life-as-I-know-it is not an option.  What we are feeling, instead, is severely stunned and confused, scared and lost, as though we have just received an extremely powerful blow or have had our tether to life, our symbolic umbilical cord, suddenly severed, leaving us afloat in a great black expanse with no guide or sense of place or direction. Instead of asking “how do I move forward,?” most of us are asking “what just happened?”  Like a tsunami, cancer rushes in, engulfs you, stripping you of everything, and then sweeps back out, leaving you feeling destroyed and without bearings.

And what is it about this state of affairs, this PTSD-like experience, that summons such denial in those around us?  Fundamentally it is, I think, an overwhelming fear that arises when they start to become fully aware of how fragile our lives really are.  They develop a sudden knowledge of how very close they came to losing the other and, thus, become aware of how vulnerable and powerless we all are.  This is so difficult to acknowledge that denial becomes a more comfortable alternative and, so, the cancer survivor in one’s life is encouraged to “move on” and “snap out of it.”

As with my initial diagnosis, I thought that I knew this drill and was fully prepared to face and cope with the post-trauma abyss.  Again, I was wrong.  Fortunately, no one in my immediate world was forcing my recovery or trying to push me to react one way or another.  On the contrary, my loved ones keep reminding me to take my time and to not try to rush anything or to “tough it out.”  Rather, it’s been my own guilt and perfectionistic tendencies that invaded my brain and attempted to push me into becoming the model survivor.  I wanted to prove that I was strong and resilient and deserved an “A+” for my successful endurance.  And not only did I want to do it all perfectly, but I wanted to do it immediately.  Only yesterday, after two long doctors’ appointments where it was made clear to me that recovery from this type of extreme radiation treatment can take up to several months and that I need to be very, very patient and forgiving towards myself, was I startled into realizing how much I had been denying and pushing myself.  And although I did feel relieved to hear that my snail’s-paced recovery was completely within normal expectations, I have, nevertheless, quickly slipped right back into cooking up a plan to speed it up and defy those expectations.  I need to be special, better, the most successful survivor.  And, despite knowing, on an intellectual level, that that is not possible, I still feel tremendously guilty for having developed complications like thrush and mucositis and for still needing so much pain medication. I feel like a failure at cancer survivorship.

Sigh…

Taking a step back…taking a breath…pausing…waiting…giving it time…having patience.  Every morning in my meditation, I repeat “I practice stopping” and “I practice letting go.” These intend, of course, to show me how to release negative emotions and fabricated stories and the theory is that if I cultivate the ability to stop and to let go, I can apply these where they are needed in my everyday life. But unfortunately, as soon as I spring off of my zafu and prepare myself for the day ahead, I’m on the run, pursuing the elusive and once again seeking to do it all perfectly and quickly. I can only guess that I need a great deal more practice at stopping and letting go!

Recognizing that we are all afraid and only giving fear different faces, it becomes possible to see that we’re all, actually, in the same boat, terrified of our fragility and mortality.  So while some are suffering a life-threatening illness and others are trying to protect loved ones, as well as themselves from the pain that is cancer, we are all, nevertheless, scared stiff.  By not acknowledging this and, thus, ignoring our common bond, we allow ourselves to remain isolated, resentful and in a muffled panic.  Our vision remains cloudy and it’s such a struggle to reach out. For myself, the stubborn pursuit of unrealistic perfection only serves to keep me stuck in my fear- the fear of knowing myself to be vulnerable and mortal and the fear of admitting my need for support.  Given the shared underlying emotions that drive this post-trauma experience, it seems logical to conclude that we, the survivor and the co-survivor, can contribute enormously to one another’s healing.  By having patience, remaining non-judgmental, maintaining a willingness to truly listen,  and by keeping love front and center, we do what in some communities is known as “holding space” and so, we recover, in the most holistic sense. This, to me, is genuine healing and it helps one get over the panic and the sense of being lost and abandoned that characterize the post-traumatic period, not only for the person who had had cancer, but for those s/he loves as well. So while “getting back to normal” is not possible, creating a brand new, honest and well-informed normal actually is. We just need to lend one another a hand.

Holding Space

The fear awakens and roars

coming at each from a different place,

but landing just the same.

It can drive a wedge and build a wall

or soften like nothing else.

Allowing us to gently hold one another

and yield.

We find relief where it’s never been known

and peace that permits breath.

We rest in that space

knowing this cannot be taken away.

RETURN FROM HELL

“Primum non nocere.”

                     ~Auguste Francois Chomel

     I could not formulate thoughts or write coherent sentences throughout the past weeks, bundles of days that saw me navigating treatments and side effects and making every possible effort to just stay alive. It was somewhat questionable, a few critical times, as to whether I would survive and, at those times, some quick emergency remedies saved me from succumbing to what in my chart is termed “severe malnourishment and dehydration.” I had to really want to stay. I knew and felt that. I also felt the draw to just let go, to succumb. It was terrifying. It would have been so much easier to let go and die. Or would it? I found myself contemplating just that – what if I just gave up? What if I simply let go? What would I miss? What would the world miss? How much pain would I cause?

     I just couldn’t go there. For just the second time in my life, I realized that I truly and wholeheartedly love life, no matter its negative or even its most abhorrent features. It was all, to me, glorious and thoroughly embraceable. It could be nothing else, nothing less.

     So it was settled. There would be no punking out, no shirking. Instead, it was “yes,” a resounding and irrevocable “Yes!”

     Beginning with the simple maxim, “Primum non nocere” (“First, do no harm”), I committed to life and began the journey.  Every single weekday, twice, at 8am and again at 1:45pm, I lay down on the cold slab, received the hand stirrups and waited while the technicians carefully pushed and pulled and, finally, tightly clamped my masked skull down in order to render it immobile and able to receive the punishing, healing rays- to kill the cancer.  That the techs gently covered me in soft, warm blankets and never forgot to start my playlist before leaving me alone in the dark, otherworldly room- this meant so much to me.  We all do what little we can to ease another’s suffering. Or so we should. It’s often just the little things that allow us our dignity and invite our grateful release.

     As with radiation therapy, so it was with chemotherapy, although somewhat less so, due, I think, to the nature of the treatments and to the less well-organized processes and routines.  Paul and I would often sit in the crowded third floor waiting area for up to an hour, proceed to a recliner chair, wait again for some time before the IV was started, and then wait more time before the proper medication bags could be verified/cross-checked and hung. We did a lot of waiting indeed. These periods, however, afford us the opportunity to listen and to dig, learning about what motivates such service.  There are some, it seems, who gravitate towards this type of work because of its precision, its demand for detail, while others have loftier motives, including the desire to give back (one nurse having had childhood leukemia, for example) or to learn more before moving off into alternative treatment modalities.  What they all had in common, though, overwhelmingly so in my view, is sincere and earnest compassion.  They are, simply, kind.

     Then there were the effects, the aftereffects and the side effects, the unintended adverse responses that my body had to the various toxic treatments.  These were, on several occasions, serious and even, perhaps, life-threatening.  I recall my visit to the ED one Sunday, where I lay helpless on the stretcher, vomiting so violently and profusely, that I couldn’t actually see or even hear anything besides the sound of my own retching.  Oddly, I recall, I could see, as if at a great distance, Paul’s dear face, looking so helpless and fearful of losing me.  I couldn’t even reach out.

     Mostly, in retrospect, I envision the many, many kind faces and voices of technicians like Leslie and Ed and nurses like Diana and Elaine, Stacey, Kelly and Laura, who clearly communicated empathy and the desire to heal and comfort.  I knew that I could rely upon them and could let go as much as I needed to in order to receive the healing that was available. And although I knew that I was never alone, thanks to Paul’s constant presence and unceasing desire to ease my pain, these service “angels” assured me that there was an abundance of reserve assistance, always available.

     And so it went for nearly 2 full months, but feeling more like years or even a lifetime.  Everything slowed down and I slid beneath the waves where there was no time or even a sense of progress or events passing.  On October 26^th, I received my final radiation treatment and was given leave to bang the almighty gong that stands in the front lobby of radiation therapy.  I felt changed forever, as I struck that instrument, and indeed I am.  No one, I suspect, gets through cancer or any other life-threatening illness without being altered in some way. In my case, the alterations have been profound and, perhaps, even radical.  In subsequent posts, I’ll seek to explicate these and to determine where I am now compelled to go as a result of the effects.  It has been a “Radical Cleanse” indeed!

FIFTH CHAKRA 101

For those friends who would like a better understanding of this chakra (Sanskrit for “wheel” and referring to energy centers or nodes in the subtle body), it is associated with communication and creative expression and when healthy and unblocked, allows one to express herself wholly and in ways that are deeply satisfying. Nancy Hausauer puts it well:

“Someone with an ideally healthy fifth chakra is usually able to create a distinctive and fulfilling life for themselves. They are very in touch with themselves and what is true for them. They are good listeners as well as effective speakers and/or writers. They are known for honesty and have a knack for getting to the underlying truth of matters. They are often influential or inspirational to others. They usually have rich creative lives, and often pleasing speaking and/or singing voices. They may be musical or poetic. They will usually have healthy necks, shoulders, mouths, ears, noses, sinuses, and thyroid glands.” 

One of the first phrases that comes to mind when thinking about the throat chakra is “speaking one’s truth.” It has made sense to me, then, to spend some time questioning whether I had become blocked by not recognizing my own truth and, therefore, not communicating it. The trouble with that endeavor is that I do know my truth and am certain about who I am and what I need. At least, this has been so for the past several years as I navigated an unsteady path and found security and independence. There seemed to be no lurking issues or dark, long-buried emotions. As for expressing myself, I’ve always been outspoken and assumed that that was enough. So where was the glitch and why is my messed-up chakra making me sick?!

It became clear to me, as a result of the past week’s interactions with a multitude of medical professionals, that I have been mistaken – that “speaking out” is merely the act of vocalizing, while “telling my truth” implies a sort of honoring of Self, as well as the expectation that my listener will respect my message (regardless of whether s/he actually does).  Eleanor Franklin’s well-known quote, “No one can make you feel inferior without your consent” rings true here. I have survived the past several decades assuming that if I wanted something from someone, I needed to manipulate my communication towards the one end, that of creating in the receiver the desire to deliver. I am now brought up short, dumbfounded as I realized that this, in no way, constitutes healthy communication.  But the most disturbing part is that I too believed my own messages.  This is NOT truth-telling.

Okay, so what was the lesson that I needed to learn over the past two weeks?  An earlier post mentions the effort to be a compliant patient in order to ensure the best of care and it also notes my inner rebel.  With those competing factions playing out continuously, despite a conscious effort to quiet the clatter, I have found myself becoming enraged and exhausted. Why do I need to ask that my medical care be delivered in a way satisfying to me?  Why are these people treating me like a child?  Why do they need to be so freakin’ nosey, so invasive?!  And WHY do they ask the very same questions over and over and over when each has typed in my responses, over and over and over????!

@#$%&!

I became worn out from the furor and then even angrier when I realized that I was expending energy that should be directed towards healing on all the festering instead. At a loss, feeling stuck, I went to bed on Wednesday night, resolving to put a lid on it the very next day. I saw no choices, no alternatives.

Most of us have heard it said that if you go to bed thinking about a problem you seek resolution for, you will often wake up knowing exactly what to do or how to best approach the problem. I can verify that this phenomenon does, indeed, occur because that is what happened overnight for me. In this case, I awoke with a clear vision and a certainty about how to proceed and for the next two days, found great success in the process. It’s actually so simple and to those of you who already practice deep honesty, something of a no-brainer.

I realized that it’s not about identifying a “want” and trying to have it recognized and met but, rather, it presupposes a deep self-knowledge and the rooted assurance that you know what you need and it is honorable.  So, under this condition, there is no need to beg or to manipulate.  There is only choice in how you communicate what you need and want and a decision about how you receive the response. So simple.

From the moment of that realization, everything became so much easier.  My shoulders relaxed a little and I experienced some real calm and a true sense of equanimity.  They asked the rote questions; I answered them.  They offered their recommendations and warnings (always lots of warnings…ugh!); I listened and considered.  When I perceived an infantalizing tone, I overlooked it. Not my problem. I know, with complete confidence, that I am not a child and that I can and will make my own choices, carve my own way. So why react? I don’t need to proclaim my maturity or defensively remind others that I will make my own decisions.  I will just do it, when it is an appropriate option.  The medical team is still in charge of my care and I depend upon that and am grateful for their vast and stunning expertise.  But how I respond to their ministrations is entirely up to me.

Easy-peasy.

Update on how I’m navigating on a physical level… I’m beginning to feel pretty crappy, my friends.  I can fall asleep anywhere, at any time. My body has a heaviness I’ve never known before. So far, I’ve stayed awake during my commute (!).  Since I never experienced fatigue with my radiation treatment for breast cancer, I assumed that it was an exaggerated side effect or one experienced by people sicker than I was.  I was wrong.  It seems that having a significant area of your body burnt to a crisp, twice a day, every day, can tucker you out!

And my throat…oh, my throat…on Thursday, I met with Dr. Bowtie (rad onc) and when he asked if I needed any pain meds, I assured him that I was having only the mildest of pain.  But by Friday evening, the pain had become more severe than anything I have ever experienced except for the anesthesia-free wire localization prior to breast cancer surgery. Whoa.  So I put away the Friday night pizza I had been looking forward to and, with much difficulty, downed about a quarter cup of miso rice noodles. I discovered that frozen coconut bars are one of the few frozen desserts that don’t burn (really? grape juice burns?!), so I’ll now be stocking up on them, along with ingredients for smoothies, juices and soups. I am so grateful now for my juicer (thank you, Shannon) and my Vitamix! And I will now ask Dr. Bowtie to break out the prescription pad. In the meantime, it’s tylenol every 4 hours and Benadryl for the itching and mouth sores.

But as they say, it’s all good. This entire challenging process is so worthwhile if it brings me the opportunity to come to know the strong, beautiful, inspiring people who are walking this walk with me, allows me to see beneath the exterior of those with whom I would, ordinarily, relate to on a mostly superficial level, affords the chance to love and be loved by my family and dear friends and encourages me to go deep and connect with true Spirit. Yep, totally worthwhile.