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.
When flight sets you free. Photo credit: Casey Horner
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
Photo by Casey Horner
***
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
Photo by Cyrill Hänni
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.
Let your heart lead you to your own inner wisdom
***
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.
A journey of a thousand miles starts with 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 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:
Dream Catcher Photo Credit: PhotoDyaa Eldin
“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”
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.
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What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
If you want to see the sunshine, you have to weather the storm. –Frank Lane
A rare spring storm brings rainfall. Everything is fresh.
I’ve been meditating twice a day. Even so, I’ve had some trouble dropping deeply into silence. Thankfully this morning, my mind stilled almost immediately, but what came up was not what I expected.
I meditate in my bedroom. One window is high on the wall and has views of cottonwood tops just starting to leaf out, a bit of adobe and streaks of morning sun. It radiates morning, possibility and promise. I love this view.
Another window looks out into a meadow where birds sing to each other. Here the sun bathes everything in its early light. The grasses glisten; the air smells sweet. This is one of the reasons I love the morning.
Photo by Rose Erkul on Unsplash
And this morning, with a passing storm, we’ve finally had a bit of rainfall. Everything feels so fresh and vibrant.
Yet I had a deep meditation that brought up all that is stale.
For whatever reason, the lingering doubt, uncertainty and pain that have been riding with me decided to make their presence known this morning. I am wise enough to know this is good. But it is also painful.
Sleeping, I had a dream. I was standing alongside a road. A procession of people arrived, one by one. In their own way, each person embodied some potential. They arrived; we seemed to talk; then they departed.
As each person left, I re-arranged the items I carried with me, each time making them more compact and portable. Finally, I slung my small knapsack over my shoulder, and I continued down the road.
In my dream, there was a total absence of feeling or emotion. I continued effortlessly on my trek, without ever looking back.
I awoke from the dream and set it aside. It wasn’t particularly troubling; just jumbled. And then, I settled in to meditate first thing in the morning, as I always do.
But deep in my being, there was pain. And with the stillness of meditation, it emerged. I couldn’t stop it; I couldn’t deny it; so I went deep into it. Pain is better than numbness, and I stopped to listen to what it had to say.
I suppose it was inevitable. I still have to fully mourn the events that kicked off this late life travel foray of mine. I betrayed Chanel when I broke up my home. My home, that I poured so much love into. My so-called friends that intentionally destroyed my business life and my finances. In retrospect, I should have seen the latter coming.
And at the root of it all is cancer. The thread that sent my life onto a strange and unexpected tangent.
The intense pain I feel this morning is strangely my friend. It’s my body’s way of grabbing my attention.
But it needs to leave.
For it to leave, I need to let it go.
You will not be punished for your anger, you will be punished by your anger.
–Buddha
This morning the birds are chirping more brightly. I am grounded. Grounded as pain continues to pour out. Grounded in gratitude that it is here. I know it needs to be felt, processed, and released. I am staying with it.
But my pain, if I’m honest, is one of attachment. Attachment to a past time. Attachment to a story. It really is neither here nor there; it exists only in my mind. It may have happened, but it’s in my perception and judgment that it lingers, staying alive. It doesn’t exist in the present moment, in the “Now”.
In reality, Chanel has found a good home with the socialization she needed. I could not have provided that for her. My beautiful home is no longer a burden of maintenance, taxes and repair. It has given way to beautiful travel vistas. And people…when it comes to people I’ve adopted the Oscar Wilde saying:
“Some cause happiness wherever they go; others whenever they go.”
It’s just another encounter along the road.
Road trips are never what we expect. Not if we’re open to the journey. Does the next bend in the road reveal beauty or challenge? Or both?
The incredible vista of the road
This morning, with this emotional storm, I’ve had the stuffings knocked out of me and I think I’ll just pause for a bit. Feeling, being, not thinking. Just being here, now.
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What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
“Sometimes serendipity is just intention unmasked.” ― Elizabeth Berg, The Year of Pleasures
So much of what I am learning is about unlearning.
I like to think myself free of many of the cultural bounds I have lived in, but I am not. As I travel, the extraneous falls away, but I am still the product of the world in which I have moved for so long.
But somewhere in this past year, I have crossed a threshold. It might be a threshold of just not caring. But actually I think it’s more of a surrender to the journey. And an abandonment of my so called mind, its comparative judgements and desire to control.
Instead, I am simply present and curious, and in this I find great joy.
***
During my flying days, I remember being at the airfield one day. A friend had come down, to see my new plane, Whiskey Oscar, and to just hang out a bit. After a bit, she turned to me and said: “Why are you doing this?”
Why am I doing this? Flying is magic and it touches my soul.
She’d watched me struggle with the size and bulk of the plane; with the need for assistance that was granted oh-so-reluctantly. There were a million not so subtle clues that I really wasn’t welcomed into this male aviation bastion that I had joined.
“I just want to fly,” I replied.
I looked at her and repeated my words: “I just want to fly.” It was a response from deep in my soul and I uttered it with total peace and conviction.
It was the joy of flying that drove me forward, through all the petty difficulties and nonsense.
Why hadn’t I learned that life lesson sooner, that it is all about the joy?
And now, in my sixth decade, I find joy in life’s serendipity and adventures, albeit on the ground.
There is something about the adventure of being on the road that allows one to step out of the bounds of routine, that makes the space for serendipity to arise.
From 11 Life Lessons Learned from the Road: bit.ly/2ArBwpq
Saturday was a curious day. I was a bit without a rudder. There is always work to do on the blog. Growing social media. Opening new doors. I could employ three of me full time.
But Saturday, I felt the need to just be out, away from my computer. I wandered and in my wanderings, serendipity arose not once, but twice.
***
My travel wardrobe (as I’m sure you will recall!) is black, grey and off white. Everything matches, although nothing matches really. And it’s all just fine. It’s a uniform I don with little thought and I like the freedom it brings.
Now just a splash of color would be nice. So I am on a semi-perpetual scarf quest, at least for the moment.
I am in no rush. Serendipity will allow the right thing to appear, at the right time. And in this day of wandering, I did not find a scarf, but a conversation.
***
The Santa Fe Farmers Market
I wandered over to Guadalupe Street where the farmer’s market was just wrapping up. I know if I stop in I will find something, but that is not what today’s quest is about.
Today’s quest is for a bit of color.
On Guadalupe Street is a combination of stores and restaurants, jewelers and consignment shops. Peruvian Connection is on one corner, and across the street, Double Take.
Double Take is a consignment shop with seemingly endless finds. The first floor is pure cowboy/cowgirl, with everything from oodles of jewelry to boots and clothes.
Falling on the cowgirl side of the equation, I am always taken with the turquoise jewelry. Case after case of beads and bracelets tempt and beckon. But I have a few things I love and I need no more. Even so, I do enjoy browsing this Saturday afternoon.
Beautiful colorful baubles
More bracelets, this time in turquoise
I wander the bracelets and beads. The beads are beautiful but the prices seem a bit high; a bit too tourist inflated. The flea market north of town has better prices and perhaps better jewelry too.
I head towards the other side of the shop where the vintage clothing lives. Perhaps I’ll find a scarf here.
But rather than a scarf, I get talking to an attractive woman a bit younger than me. Her name is Sarah. We share our Santa Fe enchantment/entrapment tales.
New Mexico is called The Land of Enchantment for good reason. If you connect with this place, it’s a soulful connection that isn’t easily cast aside.
The landscape of Santa Fe
The flip side of that is that it entraps you. Once New Mexico is in your blood, you are forever entrapped by the Land of Enchantment.
For the people who are drawn here, the pull is almost palpable and it immediately creates a connection, to the land and to each other. There is a knowing and acceptance that opens conversations on a more personal, energetic level than I’ve experienced elsewhere. Perhaps this is one of the reasons that I am so drawn to this place.
I tell Sarah the tale of CancerRoadTrip. Of betrayal, of pursuing my own healing through travel. And of the future plans to give to others.
She responds that it is perfect.
“It’s a work in progress,” I respond laughing. I point to the amazing resources of a place like Santa Fe for a healing retreat.
“Feldenkrais”, she responds.
I pause.
Pardon me?
“Feldenkrais”. I have no idea what she is saying, much less talking about.
“I can’t explain it”, she tries to explain. “You just have to try it”.
She asks for my email. I give her my card and she promises to send me the information.
And, sure enough, later that day, an email with the directions to Feldenkrais appears in my inbox. Sunday 11 am.
At first, I write a polite, non-commital response. But something sticks with me; I decide to google Feldenkrais. And it’s a fascinating story.
Dr. Moshe Feldenkrais was born in Russian, immigrated to Israel and eventually worked for a number of years with Joliet Curie in the French nuclear program.
Feldenkrais was physically active until a knee injury sidelined him. Simply walking was problematic, between mechanical dysfunction and unrelenting pain. And that is when he focused his very keen mind on a synthesis of physics, body mechanics, neurology, learning theory and psychology to develop the Feldenkrais method.
Photo by Samuel Zeller on Unsplash
This method leverages knowledge with experiential understanding to rewire the brain, to find new methods of movement. As one learns to experientially move in new ways, the mind also learns to think in new ways. It’s about self knowledge, discovery and choice. The brain’s neuroplasticity, something science is just getting onto, is perfectly capable of rewiring itself and translating that knowing to the body.
What implications does this have for chronic pain issues, not to mention cancer?
But I digress.
This particular session had to do with experiencing the function of the lungs. Did you know that the right lung is larger than the left? It has three lobes versus two on the left. Have you ever felt or sensed this disparity?
The series of breathing and visualization exercises took me deep into the movement of my lungs. I understood breath in a new way. I felt the function of breathing in a way I never had before. And because it’s experiential, the sensation and awareness of each lung, rising, deflating, moving through my body is now a part of me. I can draw on this exercise and sensation at will.
As Sarah had forewarned me, you have to experience this.
For me, this resonated on a far more profound level than yoga ever had (although getting up and down from the floor during this exercise, I realized some time in the yoga studio would also be good for me). I can only imagine how much I might learn over time, about body wellness and dynamics.
After class I stopped and chatted with the instructor. I ask her how she got into this.
“I was a dancer and at the age of 15 I started having hip problems. They told me I needed surgery” she explained. But rather than surgery, she found Feldenkrais and was so captivated, that after art school in New York, she decided to concentrate full time on this method of healing.
Needless to say, I’m heading back next week for more Feldenkrais. I hope that this may be an avenue to deal with some of my mobility problems and the unending pain in my shoulder that started with my hip surgery after the last round of chemo. And perhaps a method of insight into that elusive mind/body connection that I believe is such a crucial key to healing, life and wellness.
***
Serendipity arrives in yet another form on Saturday night. I am feeling unusually social. I stayed in Friday night, too tired to do anything. But tonight I’d enjoy some company. I browse the MeetUp groups. Perhaps there is something here.
A dinner for women entrepreneurs catches my eye, but the RSVP deadline was yesterday. Nevertheless, I leave a message seeing if I might join. A bit later, a text appears on my phone. I am welcomed.
Photo by Cathal Mac an Bheatha on Unsplash
In some ways being in Santa Fe is like being a stranger in a strange land. Serendipity welcomes me at many a turn and I find an easy comraderie with people. It has never been like this before. Is it me, is it Santa Fe, or is it some combination of the two?
Tonight, six women gather, each with their own fascinating story to tell. And they are all great stories, of women navigating families, work and life, all on a quest for something with deeper meaning. One has sold a business and written a book; another is developing a healing retreat. Some are lost, some are found, at least for the moment.
We chat. We eat. We regard each other and smile. Serendipity is at work, and we all recognize it with deep gratitude.
We part, looking forward to our next get together.
More Reading on Serendipity and Life Lessons From the Road:
I wish I were on a road trip of unlimited possibility. The road never ends and all of that.
But I’m not.
I’m in my sixth decade and face some health challenges. So far I’ve been able to manage things fairly well, but that may or may not last.
As a result, my road trip has some limitations which makes it all the more poignant. I’m not on a search for novelty; I’m more on a quest of experience.
“Experience of meaning” is a phrase I came across recently. Joseph Campbell in an interview with Bill Moyer said:
People say that what we’re all seeking is a meaning for life. I don’t think that’s what we’re really seeking. I think what we’re seeking is an experience of being alive, so that the life experiences that we have on the purely physical plane will have resonances within that are those of our own innermost being and reality. And so that we actually feel the rapture of being alive, that’s what it’s all finally about, and that’s what these clues help us to find within ourselves.
Bill Moyers so elegantly responds…
You changed the definition of a myth from the search for meaning to the experience of meaning.
And all good road trips lead to the “experience of meaning”.
Let me share a flying story, from an earlier (aerial) road trip:
Soaring through the skies
Sun streams through the canopy. It is brilliant, warm and enveloping. The sky is blue and below the saphire-turquoise waters of Tahoe lie like a jewel on the earth.
I sit in the cockpit, a thin fiberglass shell held aloft by 15 meters of flexing wing. At the edge of each wing is a small winglet that projects vertically into the sky.
I bank the plane, the tiny winglet parallel with the earth, searching for lift.
I feel lift under the winglet. It’s a bubble of air and I balance on it. The plane and I are one. Together we rise–we dance– into the sky.
Lake Tahoe
Warm sun streams through the cockpit. Endless blue sky; Tahoe below.
It was a moment of perfect synchronicity. The energy of the air, the warmth of the sun, the beauty of the earth.
And for that timeless moment, all was one.
Sun, energy, beauty. And I was riding in the midst of it all, connected to it all, now and forever.
This moment has stayed with me and its intensity hasn’t diminished with time. It’s an experience that gave me a sense of knowing that is rooted in the unknowable. It’s a feeling of timeless, complete connection and joy.
“Eternity is that dimension of here and now which thinking in time cuts out.” –Joseph Campbell
Is this perhaps the “experience of meaning” that Joseph Campbell and Bill Moyers are exploring? An amorphous knowing not easily shared? A deep and soulful encounter with eternity?
Our souls need nourishment. They thrive on a bit of mystery and ambiguity that lead to a deep sense of knowing. The fun of travel is that it’s not just metaphorical; the answer lies just around the bend!
The winding road, this one from the ski hill outside of Santa Fe
The metaphor of the road trip is an old one, embedded in our discourse. Fork in the road; bump in the road; the road to ruin. Twists and turns. What is the magic of the road?
I believe it’s a sense of present moment awareness–so present on a road trip– that opens our non-thinking selves to deep and moving impressions.
Georgia O’Keefe’s painting of Plaza Blanca
I visited Plaza Blanca recently. It’s a dramatic landscape a bit off the beaten trail. Georgia O’Keefe memorialized it in From the White Place, painted in 1940, oil on canvas. An uneven rutted road leads to the rock formation. My car was not made for off road driving, and I carefully picked a path through the desert dirt to the parking area.
I got out.
The rocks of Plaza Blanca
I was immediately engulfed in a profound sea of silence. Silence so deep and endless it was nearly palpable. An eternity of silence amidst the eroding towers of rock.
As I write this, I can still feel the silence, the slight wind as it passes by without a sound. It was an “experience of meaning”, a connection with eternity.
Cancer often leads to an “experience of meaning” in that it takes us out of our heads and into our souls. In this way it can be a gift. Gilda Radner once said: “If it wasn’t for the downside, having cancer would be the best thing and everyone would want it.”
If it wasn’t for the downside.
With cancer, the world becomes very real, very quickly for most of us. That which is not essential is eliminated. That which is meaningful remains.
And it’s here that the “experience of meaning” may have a chance to take root. People talk of the impact of the beauty of a flower; the charm of a small bird outside the window; the touch of a loved one. Here in this place beyond our minds is an experiential road trip. That’s the road trip for me. And hopefully for all our souls.
***
Three types of time
This past week, I wrote a piece about my cancer experience. It’s a chronology of tests and treatments. A friend of mine, knowing a bit of the background, commented: “It’s amazing what we survive.”
Cancer or not, I think we all want to do more than survive. But to fully live, we need to be open to the magic of the moment to have the “experience of meaning”.
With cancer, the recognition that time is limited becomes part of our reality. We quickly learn to focus on the here and now, and what is important. Clock time fades away; we may get stuck in psychological time; but elements of eternal time seem to crop up more often.
And with the recognition that an eventual deadline approaches, one realizes that each moment counts. This is the gift, the meaning of time and the experience of meaning that often eludes us in our frantic daily lives.
***
Question: So what is the real meaning of a road trip?
Answer: What is the meaning of life?
Let me leave you with a Zen koan:
Photo by Patrick Hendry on Unsplash
Enlightenment is like the moon on the water.
the moon does not get wet, nor is the water broken.
Although its light is wide and great,
The moon is reflected even in a puddle an inch wide.
“Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;
I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.”
–Robert Frost, The Road Not Taken
I am always moved when I read this poem. I feel as though Robert Frost stood not just at a parting roadway, but perhaps a roadway with one path to the future and one to the past. But only the path forward, the path into uncertainty, was worth taking.
It is the beginning of a new year. I am grateful. And in gratitude, I take the time to look back and to look ahead.
What wisdom comes from six months of travel, six months without a home or an endpoint? Without certainty, possessions or security of place?
What have I learned? Here are some of my go-to lessons to cope with life, travel and, oh, yeah, cancer!
Some Lessons From The Road
Life Lesson #1: Have A Sense of Adventure
Some travel to take tours.
I say travel for the detours!
Set sail, and go with the wind. I actually knew a pilot that would simply take off and fly into high pressure (i.e. good weather). He landed wherever he landed. He visited the most unusual places!
Travel for life’s detours!
Life Lesson #2: Take The Time To Be Still
Only when you’re still can you progress. I know that sounds contradictory, but consider: A life well lived implies some creativity and creativity needs quiet to take root and grow. Quiet is nurturing; restorative.
Sometimes it is the change of place that allows one peace. That’s where travel comes in.
To capture that peace day to day, that’s where discipline comes into play. (see Life Lesson #9)
Wisdom from Oprah
Life Lesson #3: Believe In Yourself
Look to your own inner guidance. Believe in it.
The most powerful voice is the one that lives in your head. Learn to calm your mind; observe your thoughts. Learn to carefully craft them as well. This is a conscious choice, one that involves ongoing effort. (See Life Lesson #9)
Healthy Attitude
Life Lesson #4: Be Optimistic
According to Oscar Wilde : “The basis of optimism is sheer terror”.
I laughed (see Life Lesson #7) when I read this because there are days when I have to agree.
I like to think of optimism as positive energy. It’s where I prefer to dwell. And why not? It takes considerably less energy than living in fear; it’s fun; it is the energy that makes good things happen. Optimism means taking the time to dream, and pursuing those dreams.
Optimism alone isn’t a cure all. (See Life Lesson # 9). But the energy it creates can drive events and it certainly makes the journey much more fun. (See Life Lesson #7 again and be sure to at least smile).
Optimism from the Dalai Lama
Life Lesson #5: Be True To Yourself
Only in truth, do we find our way. Stop, be still, listen to yourself. (see Life Lesson #2 and #3).
Life is short. Live it well.
Make Each Day A Masterpiece
Life Lesson #6: Choose Beauty
Beauty is everywhere if you choose to see it. It pleases the eye and fills the soul. Do you choose to see it?
And if so, did you notice, that it’s hardly “perfect”?
Perfectionism robs us of beauty. Instead we look for flaws. And they’re always there if that’s what you’re seeking.
When I saw the picture below, and the weeds in the field of flowers, it seemed perfect to capture the essence of this life lesson:
Beauty is wonderfully imperfect.
Life Lesson #7: Have Fun
Make fun a priority. It’s really quite easy. First it’s a decision; secondly it’s an outlook. It becomes a mindset.
I’m not talking about partying ’til dawn. Fun can be gentle, quiet and kind. I’m talking about enjoying the moment here and now.
How does one survive life– much less cancer!– without a sense of humor and fun? Make it a habit to cultivate both.
Remember to laugh and play
Life Lesson #8: Be Curious
Be ready for some twists and turns; be prepared to double back on yourself, and always be learning! Learning breeds curiosity, curiosity makes us focus and with focus we can enter “the flow”, that wonderful, timeless place of maximum creativity and productivity. Only in the flow of life can serendipity occur.
Curiosity breeds serendipity.
Embrace both.
Only in the flow of life can serendipity occur.
Life Lesson #9: Be Dogged
Things do not magically happen. On a daily basis, do what must be done. Meditate. Work. Eat well. Be persistent even when the climb seems insurmountable.
An old Zen saying:
“Before enlightenment, chop wood, carry water.
After enlightenment, chop wood, carry water.”
Baby Steps and Perseverance
Life Lesson #10: Embrace Change
For whatever reason, change is hard for most of us. Yet staying stuck in an outdated past can be deadly on so many levels.
Why not learn to cultivate curiosity about change and integrate it into your life? Since change is inevitable, why not make it pleasurable as well? (see Life Lessons # 1, 3, and 5)
Life Lesson #11: Be In The World But Not Of The World
This is a saying attributed to the Bible (which I must admit I’ve not read–organized religion just isn’t my thing). And it’s one of my favorite phrases.
To me it speaks of being here, now. Being fully alive. But remembering that the meaning in the experience isn’t the trend du jour, the bigger house, the newest car or the coolest electronic.
The meaning in life comes from within.
Wisdom transcends time.
To looking within; To helping out.
Looking ahead to 2018, May it be a year of prosperity, wisdom and peace for all of us.
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11 Life Lessons From The Road
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What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
I had originally titled this post “Homeless: Traveling the Timeline of Now”, but I find that I often get a very strong reaction to the word homeless.
When people ask me where I live, I say I am homeless. I say it with a smile and a sense of humor, I’m usually well dressed and drive a decent car, and I follow my quip with a brief explanation. If I get my delivery right, I get a laugh. But I’m learning that I need to be careful.
The notion of homelessness strikes a deep unease. People feel …what? Fear that it could happen them? It can happen to any of us.
I have to admit I felt like a bit of a hobo with that title. Wearing a bandana, carrying a backpack. As if I am jumping on trains, going hither and yon without any particular plan. But there is a plan. And I’ll be sharing it in the months to come.
In the meantime, some thoughts on travel, life, cancer and time.
***
The road goes on
Travel is a journey and a metaphor. For some travel is about a place; for others it’s about an experience. Or perhaps it’s a cause for reflection.
But no matter your destination, you always travel with yourself. So what is the point of it all?
“One’s destination is never a place, but a new way of seeing things.” Henry Miller
Traveling homeless is perhaps a bit extreme for some. For me it suits, at least for now. I want simply to be, to experience this moment and to be free of the horrible betrayal that started this journey.
Travel is my way of healing.
Photo by Jeremy Bishop on Unsplash
As I start this post I am in St. Augustine, looking out the window of my beautiful room, overlooking a lovely, trickling fountain on the grounds of The Collector. A palm tree frames the picture. It is late October, it is cool and gorgeous. The snowbirds won’t arrive for another 3 weeks.
If I were traveling alone, I would linger here a bit. To enjoy the weather and to write. But I’m on a road trip with someone else, and the agenda is set. Perhaps one of the things I need to learn is to set fewer agendas.
Yet one has to plan. And I am. Against the uncertainty of homelessness, cancer and my very uncertain future.
Do my words betray me? Does one plan for or against? Does one move in faith or in fear?
“The most important question you can ever ask is if the world is a friendly place.” -Albert Einstein
Photo by Dickens Sikazwe on Unsplash
I pass other homeless people on the sidewalks. One stations himself across from the ATM machine, near the Cathedral Basilica of St. Augustine.
Another marks his spot with a cardboard box and shoe, at a place along the water.
What separates me from them? What broke them? What has broken me?
Rather than broken, I think of myself as being mightily scarred. I think of a woman in California that helps people heal their cancer experience through art. She has one lovingly plan, design and paint a clay plate that is then fired in the kiln. The final work emerges, smooth and perfect.
Then she has you smash it.
What shall one make of the broken pieces?
It’s now your task to repurpose these broken pieces into something of beauty. It’s a perfect metaphor for many things, particularly life with cancer. Not to mention betrayal.
Overcoming betrayal and finding a new business avenue to support myself, I vacillate between pushing forward and not, although I know myself well enough that I will move forward. Somehow I always do. But the fantasy of no longer being responsible to responsibilities beckons. The thought of just letting the pieces lie is compelling.
Tom Booker: There was a boy from the Blackfeet reservation, he used to do some work around here for a while. Sixteen, strong kid, good kid. He and I were really, really good friends. One day he went swimming and dove headfirst into the lake… and right into a rock. And it snapped his neck, paralyzed him. And after the accident I’d look in on him from time to time. But he wasn’t there. It was like his mind, his spirit, whatever you want to call it, just disappeared. The only thing left was just anger. Just sort of as if the… the boy I once knew just went somewhere else.
Grace: I know where he goes.
Tom Booker: I know you do. Don’t you disappear. You do whatever you have to do to hold on.
While pondering my intent with the pieces of my life, I somehow manage to set goals that lead me forward. Baby steps, I tell myself. I think of the Bill Murray movie What About Bob? and I smile.
My mind deals with the logistics. The world is not set up for homeless people. You’re expected to have an address, a tax home, a home for the purchase of health insurance whose cost is designed to make you homeless.
My ego manufactures occasional bouts of terror and doubt, about finances and health and the practicality of it all. I try to ignore this creature, but some days it’s a bit of a battle.
My soul seems to be happy to just enjoy the journey.
This push and pull between mind, soul and ego is not a disconnect; it’s just a difference of opinion. Of the three, I rather prefer my soul.
“Life isn’t as serious as the mind makes it out to be.” -Eckhart Tolle
After this trip, I will head up to Santa Fe for a few months. My soul loves the culture and geography of this New Mexican haven. In this soul haven, my mind will focus the future of CancerRoadTrip, of creating healing havens for others, to provide education and inspiration for all of us.
Some people say I am inspirational, but I don’t feel that way. I have my share of struggles. I’ve learned many of the tricks and tools that keep me mentally and psychologically fit and on track. I work on this daily. I observe my thoughts and realize that they are just thoughts. What thoughts do I choose? What reality shall I create?
My mind, ego and soul often have different perspectives. But it’s my soul that has depth and wisdom, if only I can just stay atuned.
My soul is both worldly and other-worldly. Her worldly inclinations are towards beauty, peace and a sense of place. Aspects of being homeless are simultaneously stressful and delightful for her. Discovery and exploration is fun. Uncertainty is not.
My soul is other-worldly in that she exists to love the here and now, forever. She takes in the beauty around me with great gusto and feels fulfilled. She is very present moment.
Eckhardt Tolle, one of my favorite authors, comments that “the whole essence of Zen consists in walking along the razor’s edge of Now—to be so utterly, so completely present that no problem, no suffering, nothing that is not who you are in your essence can survive in you”.
In the Now, in the absence of time, all your problems dissolve. Even betrayal and cancer.
***
History is full of traveling souls. Others have come before me. Others will follow after me.
Right now (fast forward from St. Augustine where this post started) I’m sitting on a ship.
Looking out to sea
Yesterday I sat and simply stared out to sea. I wandered the ship and came across an “elite” area for people who repeatedly travel with the cruise line, spending large amounts of money. They are the prize customers. The ship isn’t set up for single people with cancer. We’re not a viable market. (Cancer humor)
What struck me was that my experiences, of looking out to sea, of being a part of a group or not, are and always will be universal human experiences. I think of the prior transatlantic crossings I’ve been on; I think of people a hundred years ago on ships like the Titanic. We all feel the stir of the sea breeze; we all experience the endless vastness of the ocean. I am fascinated by the timelessness and repetition of this human experience which binds us.
Sadly, cancer is an experience that binds more of us each year. And coming to terms with future uncertainty combined with one’s mortality isn’t the simplest of tasks.
The problem with cancer is that it suggests an end point; a finite horizon. It brings the choices of the past into bold relief and takes away the future without removing it. It creates an unknowable void. Will I have to face more chemo? Immunotherapy? How sick or weak could I become? I’ve done this three times now. It’s had horrible repercussions in so many ways. Can I do it yet again?
Do I want to?
You’ll notice that the fear I juggle isn’t about death. I came to terms with that long ago. My fear is about what it may take to “live”. The fear is about treatment and survival with the inevitable after effects of the therapy that’s supposed to save me.
***
Cancer has caused me to cultivate the present moment. This has been a connection of immense value to me on many levels. Through the simple act of being present, I can choose not to run in circles in my mind, but to just be.
It’s a decision that frees so much energy that otherwise would be poorly spent. I recently read that judgement is negative energy, and that thought hit home. So it is that the zen of the moment lies in acceptance, not judgement.
And by simply being present, the joy of possibilities outside the limited mind open up. The simultaneous complexity and simplicity of being present is endlessly fascinating.
When I was diagnosed in 2009, I googled marginal zone lymphoma. Some of the results weren’t so hot. Potentially manageable, not curable. May transform. Transplant. Five years, the stats said.
I refused to be powerless.
Taking charge of my cancer led to many changes in my life, all of which have been good. A vegetable rich diet gives me energy. Green tea and matcha provide antioxidant support. Connecting with others in the cancer community through Anti-Cancer Club has provided me with friends around the world, all of whom “get it”. Social media rocks when it comes to cancer.
Perhaps equally importantly, a meditation practice taught me to still my mind and that stillness comes with me in my day to day life. It reinforces that sense of being deeply, exquisitely, timelessly present.
“The art of living… is neither careless drifting on the one hand nor fearful clinging to the past on the other. It consists in being sensitive to each moment, in regarding it as utterly new and unique, in having the mind open and wholly receptive.” – Alan Watts
Photo by Jared Rice on Unsplash
If I set aside this unknowable future that my mind, health and ego periodically conjure up, I can see that I am here, now. Now, for the moment, is quite good. I can enjoy now. Now is sailing the Caribbean en route to Cartagena this perfect morning. This morning the sun rose, a perfect rising. The sea continues its gentle surge under the boat. In the distance, land is starting to appear.
Sunrise in the Caribbean
Life lived out of sync with the present moment is always uncertain. But now is very known. In now, I can usually find timeless peace. So I think I’ll just quiet the doubts in my mind, still my trouble making ego, and be here now, traversing the Caribbean, traveling my timeline of now.
For those of you with cancer, I suspect you’ll understand my ramblings. For the rest of you, I beseech you to try. We are separated only by three small words and a deep realization of the reality of fleeting time in this very human life we lead.
I’ll end my reflections with this video which is for my music loving friend Robin (The Cancer Olympics) who, after everything she’s been through, is sadly undergoing yet more chemo to deal with metastatic colon cancer due to unforgivable, gross malpractice (Read her book; the story is unbelievable.)
To Robin and to all of us:
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.
I hope you dance….I hope you dance.
I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin’ might mean takin’ chances but they’re worth takin’,
Lovin’ might be a mistake but it’s worth makin’,
Don’t let some hell bent heart leave you bitter,
When you come close to sellin’ out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.
I hope you dance….I hope you dance.
I hope you dance….I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.
Dance….I hope you dance.
I hope you dance….I hope you dance.
I hope you dance….I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)
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Traveling the Timeline of Now
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What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
Inspiration, joy & discovery through travel. Oh, did I mention with supposedly incurable cancer?
What's on your bucket list?
Thank you for stopping by!
CancerRoadTrip is about making lemonade out of lemons.
As you read my story, you may want to start at the beginning to "grok" how CancerRoadTrip came to be. You can click here to start at the end (which is actually the beginning) and read forward! The posts are chronological, with the most recent posts appearing on the front page.
