What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
A tweet on Twitter today got me thinking: I used to be a lot of fun.
I was always serious in my own way, but I was also the one who was always curious and game to do something. Go to Napa. Seek out that new, hot restaurant. Fly. Hike. Travel. Entertain. I never wanted to sit still.
Between cancer, surgery, house floods and business betrayal, fun has simply not been part of my repertoire for the last several years.
I want to laugh and explore. I want to forget about cancer, for an hour, a day, a month. I want to feel light and full of energy. I want to feel possibility and joy back in my life!
I want to slow down enough to feel. To not think. I want to be in love with life, with MY LIFE, again.
I want to feel light. Unencumbered, yet totally connected. I want to trade the trappings of the perfect suburban life for some adventure. I want to trade home maintenance for being homeless; worry for curiosity; disaffection for connection.
“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” -Joseph Campbell
Chanel went to her new home last weekend. It will take some time for everyone to adjust. For me, I find myself without the responsibility of another living soul for the first time in 35 years.
And much to my surprise, it is positively liberating.
What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
Hawaii is my first stop for a variety of reasons. One, is simply to take care of myself; to shed the stress of the last several months in a place of incredible beauty. But beyond that, there is a fascinating history of holistic mind/body healing in Hawaii dating back to roughly 700 AD. It’s a cultural and spiritual tradition that combines elements of many eastern and traditional medicines, using energy, sound, food, psychology, herbs and movement to heal.
Hawaiian healers are known as “Kahuna” which means “Keeper of the Secret”, referring to the secret medical knowledge that was passed from one Kahuna to another, generation after generation.
The noun Kahuna extends its meaning beyond medicine. It generally refers to someone who has deep expertise in a given area for example, the best surfer on the beach might be referred to as “kahuna nui he’e nalu,” the “principal master surfer.”
In medical circles, Kahuna are wise men/women or shaman. They have no formal degree. Their training is one on one, from a master who imparts their knowledge to the student. This traditional Hawaiian medical system is a very sophisticated one with specialties in Earth Medicine, Psychosocial Medicine, Manual Medicine, Movement and Marshall arts; Music and Arts; Nutrition and Energy.
The Hawaiian word for health is ola (life). Without health,there is no life. Hawaiians view the body, mind and spirit as one. The body cannot be healed without healing the spirit.
This indigenous approach to healing faced it’s first cultural hurdle with the discovery of the Hawaiian islands by Captain James Cook. Cook visited Hawaii on two occasions. First on January 18, 1778, the English explorer sailed past the island of Oahu. Two days later, he landed on the island of Kauai. He named the island the Sandwich Islands in honor of the earl of Sandwich who was one of his patrons.
The European use of iron and the “technology” of the 18th century west had an oversized impact on the Hawaiians. It is suspected that the Hawaiians attached religious significance to Cook, welcoming he and his men as gods. But on Cook’s subsequent visit int 1779,when one of the crew members died, their humanity (and subsequent exploitation of the Hawaiian’s good will) became apparent.
Captain James Cook’s attempted kidnapping of Kalaniʻōpuʻu, the ruling chief of the island of Hawaii and the decision to hold him in exchange for a stolen boat led to Cook’s death. He was killed on February 14, 1779.
The Cook explorations would have a major impact on the geographic knowledge of the times, as well as on the Hawaiian islands where the introduction of western thought would dramatically change the culture. Missionaries outlawed the ancient medical teachings in 1820 and diseases such as small pox were introduced to the island, greatly reducing population from about 800,000+ to 180,0000 by the early 1800’s.
Today in Hawaii, elements of traditional medicine remain. Given the influx of people, practices and ideas from Asia, eastern modalities such as acupuncture and tai chi have become part of the healing landscape. And of course, the incredible beauty of the islands themselves offer restoration though nature.
This alone would be more than enough for me to head to Hawaii! But in addition, it is said that the Hawaiian Islands are the Chakra system of the planet. Each of the seven main islands represents and vibrates at a different chakra energy.
The island of Hawaii is associated with the Root Chakra which represents the earth element. The second (Sacral) Chakra is said to be on Maui. The third (Solar Plexus) is Lanai. Molokai is considered the Heart Chakra and Oahu is the Throat Chakra. The Third Eye is Kauai which is associated with our ability to find clear intuition and to follow our dreams. The Crown Chakra – Niihau Niihau – is actually a private island.
Kauai will be my first stop. It is peaceful, and I need some peace. I am terrified that the stress of the last several months is impacting my health, and I need to devote myself to better fitness and stress management. I need to devote myself to me. And Hawaii, with its beauty and traditions, is a good place to start.
One of the contributors to Anti-Cancer Club, Khevin Barnes, spent a year in a Zen Buddhist temple on Oahu. He’s putting me in touch with some people and fellow blogger Eileen Rosenbloom will be on Kauai. Through Twitter, I also have some Hawaii cancer connections, and through MeetUp I am already looking at beach based meditation get togethers.
The Chakra associated with Kauai, the Third Eye, is a fitting for the first stop of this journey. On Kauai, there is also a Hindu monestary that intrigues me for architectural reasons, and probably some spiritual ones as well. Because my healing journey knows no limits or bounds. Through this adventure I am finding my voice. Through some reflection starting on Kauai, may I find some clarity.
What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
I am always up for a bit of adventure.
I think it comes from my childhood. I travelled extensively with my parents. I found myself in cities where I didn’t speak the language, sometimes without an adult. (My sister and I once got diverted to Rome when Paris was fogged in. I was 14 or so at the time. I had a great time! My parents, not so much.)
I spent summers in Greece, Yugoslavia and the French Riviera. New Year’s overlooking the Ponte Vecchio. All places Italy. Prague, complete with Russians (I’m dating myself).
At six, I was eating at Taillevent and shopping for grapes at Harrod’s. Christmas in a myriad of other countries and cultures. London with friends. This was my normal.
Travel was comprised of happy times, even when family times were not. So I think it’s natural for me to equate a bit of adventure with happiness. Though sometimes I think I may have taken this adventure theme a bit too far.
After my divorce (many years ago), I found myself lying in bed with pneumonia. My ex had run off with his nurse; the dog had died; I hated my job; I hated where I lived.
But I had learned to fly (another set of adventure stories) and I loved my sailplane. So I decided to take a sabbatical and fly my sailplane across the country. It was a totally outrageous, self absorbed aviation themed adventure. It was a great way to distract myself from the heartbreak of divorce.
The picture to the right is of my “Black Beauty” a stunning (for her time) BMW 535i 5 speed and my sailplane in her custom fitted trailer.
Of course driving with this massive trailer was something else. Backing up still eluded me. (Ask the car I side swiped in Aspen!) But from Pennsylvania through the Midwest; from Boulder and Aspen to Heber and Truckee, I soared, literally and figuratively.
I had my plane in the show at Oshkosh. I flew an ultralight with pontoons and helicoptered over the Badlands. Motor glided in Aspen. Aviation Hog Heaven!
***
I hadn’t intended to become a pilot but soaring captured my soul immediately.
It started when I took a chance glider ride in Calistoga, CA. I returned home to Pennsylvania where I learned about a group of World War II era pilots that flew every weekend. I invited myself out over Labor Day of 1991, and that was it. I flew for three straight days and I was hooked.
From there I soloed; flew a 1-26 and then decided to fly with a club further south. They owned their own airport. To fly with them, I needed my own plane. And I needed a sleek fiberglass ship. So I bought this incredible plane, and I had no idea how to fly it– yet. (Another series of stories).
Most people are unaware of this amazing sport. Here’s a glimpse of soaring through one video. It’s all this and so much more:
Barron Hilton, pilot, soaring enthusiast and son of Conrad Hilton founder of Hilton Hotels, once sponsored an international competition that culminated in a week of flying from his ranch in northern Nevada, described soaring as follows:
For thousands of years, man could only dream of soaring like an eagle, gliding effortlessly with the wind…Through a careful blend of high-tech aircraft design and instinctive pilot skill, man is able to capture the sensation known only to the birds of the hair. Managing invisible updrafts of air to gain altitude. Gliding at high speed in a gradual descent for hundreds of miles. All in a plane without an engine. A craft fueled only by the mind of the pilot.
A craft fueled only by the mind of the pilot.
Soaring, for many years, was my heart and my soul. It’s an aerial metaphor for life. What goes up, comes down. Speed up in sinking air; slow down in lift.
Each flight is entered into your logbook where you are “Pilot In Command”. I was totally alive in the air.
As in life, control can be an illusion. In the sky, human skill, preparation and ability meet the sky gods of weather and chance. It’s an incredible dance! Rising up to cloud base, screaming across the desert landscape, following the mountain spines for lift and navigation. I always think of the song “Superman” and the lyrics:
I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees
Except that I did.
Ride with clouds between my knees.
***
This trip I am about to take this time, #CancerRoadTrip, is without Whiskey Oscar. She now lives in Hemet, with an aviation aficionado that gives her the love she deserves.
This trip, will be by commercial plane and car. And whatever else comes along. Undoubtedly more mundane than riding with the clouds between my knees. Unless of course I get to New Zealand. Because then I will soar Mt. Cook.
First stop: Hawaii. I need to get my health back and keep my cancer at bay. I have to figure out my life again, with my 60th birthday rapidly approaching and uncertainty on every level stretching before me.
ThinkTLC (as in Think: Tender Loving Care) was a technology platform–an app, if you will–that was always meant to be the final piece of Anti-Cancer Club. It modeled and rewarded compassion behavior towards people with long term illnesses and it grew out of my own cancer experience.
Cancer is tough in many ways. For me, the social isolation that ensued was particularly difficult.
No one knew what to do or say.
One day, I was playing tennis indoors with my tennis group. That’s four indoor courts, or 16 people (this group played social doubles). I was going through chemo, and everyone knew about it.
But no one knew how to handle it.
We changed courts after each set, winners moving on. I wasn’t winning much at that time, but I was grateful to just be there.
After the first set, people gathered their tennis paraphernalia and prepared to change courts. One woman came up to me and put her hand out as if to touch me, but her hand never connected. It hovered near my arm, as if held back by a forcefield. It was as if she wanted to reach out, to touch me and say so much, but there was this profound disconnect of emotion, words and perhaps proprietary. Everyone was silent.
Then the spell was broken, the players switched courts, and tennis went on.
On the way out of the club, Sandy said to me “You have so many friends here, you know.” But I didn’t know. A few people gave me rides to chemo, but by and large, people were silent.
I ran into another tennis friend, a pediatric cardiologist who lives up the street, at Trader Joe’s one day. “I think about you every time I drive by your house,” she said. But she never called or emailed or texted.
Small kindnesses did happen. One friend cooked for me and coaxed me to eat when the chemo had totally destroyed any sense of appetite. Others gave rides. But overall, cancer was a very isolating experience for me. And I realized, it probably was for others as well. My boyfriend du jour, a very nice fellow, lacked the emotional depth to understand my experience. Rather than sit with me in chemo, he went to a nearby wine bar and said to call him when I needed a ride.
Needless to say, we parted ways not too long afterwards. He’s a good person, now married to his soul mate so it all worked out. For me, cancer had opened an emotional out pouring of pain, need and life from somewhere deep in my soul and I could not close it off. I needed to share it. I needed to connect with others that “got it”.
I’ve also felt the helplessness that results when a friend has cancer. Maggie, a friend from college, was living on St. Helena, an island off the coast of Africa where Napoleon had been exiled. Her husband, Paul, had taken on a job commitment for the country’s treasury, necessitating a stay of a few years to implement all the reforms.
One day Paul-an avid runner- doubled over in pain. At that time, there was no airport on the island. Supplies arrived every few weeks by ship. He was airlifted via military helicopter to Africa and then down to South Africa, where he was diagnosed with very advanced colon cancer. He was started on chemo immediately.
Meanwhile, back on the island, Maggie was frantic, packing up the house, trying to get to Paul. When she finally arrived in South Africa, they flew home to Australia. The call went out to their family, which was spread worldwide. Paul died some months after.
During that period, I felt stymied. How did I show I cared, that they were constantly on my mind, as they trod through cancer hell? In all honesty, I hadn’t been the best friend. Maggie was the one that always kept in touch through annual Christmas updates. I wasn’t a close family member, but I certainly wanted to show my care and support.
Over the next year or so, I designed a platform-ThinkTLC- that solved these issues. The tech creeps were to translate my vision into code.
That is an overview of ThinkTLC and ThinkTLC is important to this story. I structured the business as a social entrepreneurship company. My goal was to give back; to provide flexible employment especially for people going through cancer and other ongoing disabilities; and hopefully to spare others the intense isolation that I experienced year after year, dealing with cancer and its effect on my health and my life. And to make a living, and generate the money to cover the costs of growing and evolving Anti-Cancer Club.
I had looked forward to traveling with ThinkTLC and hopefully touching others when they most needed it. But my ability to keep funding everything was running out and I needed that platform finished on time.
Cancer is full of betrayals, big and small. Your body betrays you, your friends may fall away, your finances may fall apart.
In addition to all of the above, for me, there was also business betrayal. Which is what has led to #CancerRoadTrip.
I aligned with a technology/IP group to bring to life a revolutionary platform that models and rewards compassionate behavior. I created it, designed it and named it ThinkTLC (as in Think: Tender, Loving, Care). Think of it as Facebook for good. No sales of your data; just an ongoing flow of compassion to people when they most need it. I always envisioned it as this flow of energy around the globe that connected, touched and even healed people in need.
ThinkTLC was also a social entrepreneurship company that gave back. And it had ramifications far beyond cancer. Cancer was simply the starting point for spreading some care and compassion in the world.
But the tech creeps, as I shall anonymously call them, have refused (for months now) to respond to any emails or calls. I should have had a beta platform; instead I have nothing. As of this writing, they have refused to communicate. It would appear that they have simply stolen everything I’ve worked for over the last several years of life with cancer. Everything I’ve funded with my savings. This year I generated nearly 20 million impressions on Twitter. All this was built to help launch ThinkTLC. To help bring a bit of kindness to the world.
I finally hired a legal firm to get some answers. I am told that pursuing legal action will cost at least half a million dollars and three years of my life, with no guaranteed outcome. In addition to no product from the tech creeps, I now have a semi-gag order from my attorney.
I was counting on ThinkTLC launching this past fall and to start paying for Anti-Cancer Club (which I’ve personally funded to date) and a million other expenses, like health insurance! I spend a minimum $15,000 per year (Affordable Care Act????) just on premiums and in-network deductibles. Going out of network increases this amount to over $20,000. And that doesn’t include the rehab I need for my hip; acupuncture for pain and well being; or even an occasional massage which would be so comforting.
I can no longer fund all this and live off my savings.
Without ThinkTLC up and operating, I am going to have to sell my house.
My beautiful house. And where will I go? How am I supposed to deal with being #HomelessWithCancer? What about my beloved cat, Chanel? Where will she go? Will she be alright?
Will I be alright?
You would think someone on the board of a publicly traded company (one of the tech creeps) and his associates would have better things to do than make someone #HomelessWithCancer.
But thanks to them, that’s about to be my new status. So it’s time for a bit of R&R.
Time for a #CancerRoadTrip. Because when the going gets tough, the tough go traveling.
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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.
This indigenous approach to healing faced it’s first cultural hurdle with the discovery of the Hawaiian islands by Captain James Cook. Cook visited Hawaii on two occasions. First on January 18, 1778, the English explorer sailed past the island of Oahu. Two days later, he landed on the island of Kauai. He named the island the Sandwich Islands in honor of the earl of Sandwich who was one of his patrons.
aviation aficionado that gives her the love she deserves.
