Alas, scanxiety is a constant companion; I can never fully escape the implications of life with cancer.

Last time I saw an oncologist was in 2016 and I was incredibly sick. I was vomiting and unable to keep food down. Throw in a bit of bright red blood, crippling stomach pains, and you get the picture.

I was absolutely distraught about what was going on in my life. I was losing what I perceived to be everything: my house, my family, my livelihood. The people who worked with me lost jobs; one had to file for bankruptcy.

Yet my oncologist did not ask even a single personal question. My circumstances and concerns didn’t factor into his care. He just suggested tests and more tests; he hinted at new cancers that might be arising; he needed to rule them out with a barrage of intrusive, inhuman technology. And let’s not forget the possibility of cancer as a result of previous treatment, and a correlation between lymphoma and other types of cancer.

But it didn’t take $30,000 worth of tests or a barrage of statistical studies. I knew what was wrong. It was December 2016 and I was under massive stress.

And the stress was literally killing me.

My decision to forgo any medical advice or intervention, sell my house and simply walk away isn’t one I necessarily recommend to anyone else. But for me, it was ultimately the right one. On some intuitive level I realized I needed to find a major reset.

Finding oneself (not totally broke) but homeless with cancer is most interesting.

You don’t want to look ahead to the implications of the incomprehensible stress and what it may mean for your future health. The past is past; the dye has been cast. No one know what lies ahead.

But in the moment, you are totally free. That is the magic and

The beauty of travel.

So it has been, month after month, for a year now.

But it is June 2018 and I have decided I need some information about my health.

That means the scanxiety returns.

Is the cancer growing again? Did the stress of everything manifest itself in my body? If so, will I opt for treatment, or not?

What is on my absolute bucket list if my time is more limited than I’d like?

Yet how can I deal with yet another doctors office, where impersonal staff that asks the same questions again and again, and care only about payment? Where cancer patients sit passively in waiting room chairs, with the grey pallor of chemo on their skin and the chemical scent of death in the air? How can I deal with yet another disconnected doctor delivering gruesome news, without any understanding or care?

I can’t.

But I decide to go on a quest for an internist because I have decided I need some data about my health. And I may have found what I am seeking.

He is youngish. Fortyish I would guess. Which is a good age for a doctor. Seasoned, but still current. And he is of a generation that has more insight into life work balance. He has opted for a practice that allows him to be with his young family.

And he has a cancer story to tell, of his father who died at 48. He watched the treatments waste his father even faster than the cancer could. And he watched his father’s wishes for some peace in his time left ignored. He has lived the emotional terrain of this disease and he understands my scanxiety.

The doctor volunteers to run a blood panel for me, allowing me to avoid the oncology office, at least for now.  At this point, I can read my own blood tests, but I let him deliver the results.

And I breathe.

Not perfect, but nothing of immediate life threatening concern.

I get through all these medical situations by bravely steeling myself, and dealing with what ever comes up. I live in my mind. My mind can read cancer studies, understand statistics, and make decisions. My mind can ignore my emotions.

But as soon as I leave, I deflate like a broken balloon. The stress and the uncertainty of scanxiety always dissolves into tears. This is a cycle and a response that I know too well. But I can’t seem to break it. It is how I handle this ghoulish sequence of repeating life events.

Perhaps because of these intervals of scanxiety, I have learned to live life in between much more fully.  And with heart. Because heart felt living is part of the key to living well. Our mind may influence our biology, but our heart offers access to a deep well of wisdom within us.

So it’s ok if I cry. I don’t really cry enough, everything considered. The tears are a conduit for purging the stress from my system. I want to get out of my mind and into my heart and into the present, and tears are my path. My path to my soul.

When the heart weeps for what it has lost,
the soul laughs for what it has found.

–Sufi aphorism 

***

In “When Breath Becomes Air” neurosurgeon Paul Kalanithi, when diagnosed with cancer, wrote of the relief of not dealing with so much competition and stress anymore. David Servan-Schreiber, MD,PhD (DSS) (diagnosed with a brain tumor) makes a similar observation. These successful, striving people were stopped in their tracks, forced to reassess their lives by a disease that would ultimately end them. DSS lived to be 50 or so. Paul died in his thirties. Faced with a dire cancer diagnosis, both faced choices about how they lived the rest of their lives. (See the CancerBookClub discussion here.)

I know how they both felt, about achievement, stress and accomplishment. And I understand how cancer can change our perspective on what creates a successful life.

How do we measure success? I look at my own attempts to navigate society’s matrix and I cringe:

In college, I spent a summer training for the squash team, to earn the number 2 place on the varsity squad (then lost it in a match played with the flu). I majored in finance at Wharton because it was the hardest thing to do. I commuted from Philadelphia to New York every day for more than a year, rising in the dark and returning home after dark, even in summer.

I worked insane hours at the behest of an incompetent boss. I outright lied about him in my exit interview to assure his ascent up the corporate ladder and my own good references. I did deals that made no sense because they were politically driven, not necessarily economically viable. I put aside nearly two decades of my life for a husband whose parting words were “I never loved you”. I gave and I gave and I gave and I came up empty again and again.

These mountains that you were carrying you were only supposed to climb

Najwa Zebian

I suspect that I am not alone in some of these experiences. I performed for praise and for a place at the table. Little did I know I was sitting at the wrong table.

One has to ask, what are we doing to ourselves? Why do we persist in such obviously maladaptive behavior, generation after generation? What set of standards are we seeking and setting, individually and as a society?

In my own quest for health I have come to the conclusion that our lives and this matrix we live in are far unhealthier than we even image.

Mental health is never addressed until someone blows up. Many of us live with decades of psychological pain buried, unbeknownst to ourselves, in our bodies. We act out this pain again and again, going nowhere.

Glyphosate invades our food supply. It’s in the soil in Napa. These and other chemicals and opioid drugs are found in our water.

We are social creatures, yet community is a buzz word, often far removed the reality of life where our garage and elevator doors open and close behind us, and processed food can be delivered to our door.

We are externally oriented, driven by baubles and bubbles.

We buy into society’s matrix, believing it is real, and in doing so ignore the deep reservoirs of human knowing within.

And 40% of us will get a cancer diagnosis. Not to mention a host of other diseases.

What’s wrong with this picture?

“If you do not change direction, you may end up where you are heading.”

–Buddha

Ask yourself: How do you care for yourself? Your family? Are you connected to your soul?

Ask your heart. Then be still and just listen.

***

Travel is the perfect metaphor for a journey within. Even if one must go down the rabbit hole of scanxiety.  I suspect I will always be juggling scanxiety and my own contrary desires for ignorance and information. I think I am coming to err on the side of information once again, so I am moving towards resolution, whatever that may be, at least for the moment.

Cancer sucks. There is no debating that. It is a death of sorts. But it’s also life because there is wisdom to be found in the experience. If you could reexamine and remake your life, what would you choose?

Would it be houses and cars and clothes? Status and stuff?

Or would you choose to respect the earth and our food? Your own body and choices? Would you choose beauty? Harmony? Love?

How would those choices impact those around you?

Be the change you want to see in the world.

–Mahatma Gandhi

Change starts one person at a time. Never underestimate the impact you can have on others. Never underestimate the power of a single step.

***

Many ancient civilizations have a wisdom that we seem to have lost in the busyness of our lives.  It is one of the things that fascinates me about perspectives on health and healing. What can we learn from the past to move us forward, in our world today?

The Ka Ta See of South America note that:

“The people of this planet are forgetting how to experience outside the tyrannical habits of their minds.”

Thirty years ago I would not have understood this. I was mired in a matrix of accomplishment, status and stuff. I knew something was missing. I just didn’t know it was me.

It was flying that opened my eyes to the world because it opened the world to my soul. That ridiculously rash act of joining MASA, buying a “hot” plane and learning to fly became a pivot point in my life experience. I used to paraphrase the best selling book, All I Really Need to Know I Learned In Kindergarten, with All I Really Need to Know, I Learned Flying.

And all the lessons were there. It embodied risk and responsibility; fearlessness and trust; independence and interconnection; the power of the earth versus the ego of man; the beauty of the soul.

The experience of the earth from above, navigating by the invisible powers of the sky, is nothing short of astounding.

My soulful journey started in the sky. It was restarted with a cancer diagnosis, and now a travel quest. Because I’m always up for a bit of adventure. And in travel and in the quiet of my soul, I seem to find it.

Joan Halifax in her new book Standing At The Edge  Finding Freedom Where Fear and Courage Meet talks about the fact that as humans, we are always in free fall. She writes: “It’s not like we will find some moral high ground where we are finally stable…It’s more like we are all falling above the infinite groundlessness of life, and we learn to become stable in flight…The final resting place is not the ground at all but rather the freedom that arises from knowing there will never be a ground, and yet here we are…navigating the boundless space of life”.

Wise words from a renown Buddhist monk.

The American Indians of the southwest also have a legacy and a culture of great wisdom, tied to the timeless wisdom of the earth. And so I choose to leave you with this quote from Chief Tecumseh. It’s a bit long, but worth reading:

“So live your life that the fear of death can never enter your heart. Trouble no one about their religion; respect others in their view, and demand that they respect yours. Love your life, perfect your life, beautify all things in your life. Seek to make your life long and its purpose in the service of your people. Prepare a noble death song for the day when you go over the great divide. Always give a word or a sign of salute when meeting or passing a friend, even a stranger, when in a lonely place. Show respect to all people and grovel to none. When you arise in the morning give thanks for the food and for the joy of living. If you see no reason for giving thanks, the fault lies only in yourself. Abuse no one and no thing, for abuse turns the wise ones to fools and robs the spirit of its vision. When it comes your time to die, be not like those whose hearts are filled with the fear of death, so that when their time comes they weep and pray for a little more time to live their lives over again in a different way.
Sing your death song and die like a hero going home”

–Chief Tecumseh (Crouching Tiger) Shawnee Nation 1768-1813

Scanxiety, Cancer and Reading–Three of My Favorite Soulful Books

Learning to live with the uncertainty of cancer and the certainty of scanxiety, I have tried to find some balance between stress (like my scanxiety experience above) and day to day life. Recognizing the lack of control we actually have is eye opening, and I choose to see it not as worrisome, but as opportunity. If I have NO control, what might come up? I look for the interesting and serendipitous, and it tends to take me good places.

And I read constantly. In this age of the two minute video, I make it a point to cultivate a more enduring attention span. Here are some of the books that have touched me or that travel with me.  Drop me a line (twitter or email or a comment below) and share your favorites! I’m always looking for good reading.

I love this book for its depth of soul  and deep wisdom.

From Amazon:

“I recommend this book highly to everyone.” –Deepak Chopra, M.D.

“Despite the awesome powers of technology, many of us still do not live very well,” says Dr. Rachel Remen. “We may need to listen to one another’s stories again.” Dr. Remen, whose unique perspective on healing comes from her background as a physician, a professor of medicine, a therapist, and a long-term survivor of chronic illness, invites us to listen from the soul.

This remarkable collection of true stories draws on the concept of “kitchen table wisdom”– the human tradition of shared experience that shows us life in all its power and mystery and reminds us that the things we cannot measure may be the things that ultimately sustain and enrich our lives.

It’s interesting that the first time I read When Breath Becomes Air, I thought, “oh no, another doctor finally discovers his mortality”. But I read it again for CancerBookClub and it is a wonderful book. I found myself deeply relating to Paul’s predicament of having his life ripped out from under him. If you read it, make note of Emma, the oncologist.  Now that is a wise woman!

From Amazon:

At the age of thirty-six, on the verge of completing a decade’s worth of training as a neurosurgeon, Paul Kalanithi was diagnosed with stage IV lung cancer. One day he was a doctor treating the dying, and the next he was a patient struggling to live. And just like that, the future he and his wife had imagined evaporated. When Breath Becomes Air chronicles Kalanithi’s transformation from a naïve medical student “possessed,” as he wrote, “by the question of what, given that all organisms die, makes a virtuous and meaningful life” into a neurosurgeon at Stanford working in the brain, the most critical place for human identity, and finally into a patient and new father confronting his own mortality.

What makes life worth living in the face of death? What do you do when the future, no longer a ladder toward your goals in life, flattens out into a perpetual present? What does it mean to have a child, to nurture a new life as another fades away? These are some of the questions Kalanithi wrestles with in this profoundly moving, exquisitely observed memoir.

Those that follow this blog know that I’ve become an Eckhart Tolle fan. And this book can be life changing. It echoes wisdom from the past, and incorporates Tolle’s own unique insights and experiences on spirituality and mental health. Not necessarily the easiest read, but IMO a must read.

From Amazon:

To make the journey into the Now we will need to leave our analytical mind and its false created self, the ego, behind. From the very first page of Eckhart Tolle’s extraordinary book, we move rapidly into a significantly higher altitude where we breathe a lighter air. We become connected to the indestructible essence of our Being…Although the journey is challenging, Eckhart Tolle uses simple language and an easy question and answer format to guide us.

A word of mouth phenomenon since its first publication, The Power of Now is one of those rare books with the power to create an experience in readers, one that can radically change their lives for the better.

More On the Emotions Of CancerRoadTrip:

Weathering The Storm
Traveling The Timeline Of Now
More Thoughts On The Metaphor Of A Road Trip
Life in Six Month Increments
11 Life Lessons Learned From The Road

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