What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
I live my life in 6 month increments.
This is much better than the every three month blood tests and check ups that I started with. I am grateful to be stable enough to go six months, for now. But I am always on the alert. Am I unusually fatigued? Is that lymph node a bit elevated? Is the itching a sign that it’s back?
Living with lymphoma, like all cancer, changes your life. Nothing is constant; nothing is guaranteed. The illusion of predictability or any control over life is long gone.
For me, cancer brought my life to a dead stop. How could I have cancer? I was fit and active. Granted my diet included luscious blackened rib eyes and margaritas. But cancer?
In my case I would hazard a guess that the cancer was a combination of bad luck, genetics and a bit of personal trauma. Divorcing, moving across the country alone and starting over again (not to mention the flying!) did not create an emotional atmosphere of support. Quite the contrary. And moving into a town (Reno/Tahoe) with small town roots wasn’t easy. I assimilated by trying to fit in (which I didn’t); not making too many waves; and just putting one foot in front of the other.
I worked with several start up companies; at one point got a real estate license until that crashed; and generally lived well within my means. Which financially saved me (at least for a while) when the cancer diagnosis rolled around.
My first round of treatment was simply Rituximab (Rituxan) , a mono-clonal antibody that should have been simple. But it turned out to be my personal drug from hell. My chest tightened; I couldn’t breathe; I had head to toe hives; fatigue; and joint pain so intolerable that I would scream in the shower trying to move my hand. I couldn’t hold a cup of coffee. I spent two straight months mostly in bed.
Rituxan did not stay the cancer. So onto the next potion: RCVP (Rituxan, Cyclophosphamide, Vincristine, Prednisone) Each infusion took 2 days due to my problems tolerating the Rituxan. The prednisone for the 5 days following chemo was simply horrific.
I did six rounds, one every three weeks. My hair fell out. The exhaustion was indescribable. I vividly remember at the finish of the third round, feeling simultaneously terrified and optimistic.
“Yay! I’m halfway through!” That was my optimistic self.
My next thought was “Oh no, it’s half over!” Is 6 rounds enough? Will it work?
It was working. I could feel the tumors melting away. Publicly, I kept up a good front. I continued playing tennis (poorly). What no one saw was that two hours on the court put me in bed for two days.
The chemo brain that ensued was beyond comprehension. And, at that time in 2010/2011, doctors still doubted it was real. I remember breaking down sobbing in Costco one day because I couldn’t enter my 4 digit pin. This is from a girl who used to do log calculations in her head!
My cancer came raging back not long afterwards following a period of huge stress. The stress came from my neighbors who put a 9,000 square foot house on the property line next to my house. I had to re-landscape my yard simply to salvage any value in my property.
So, just after the end of chemo, exhausted and weak, I found myself dealing with a construction project in my backyard. Evenings I found myself straddling trenches for gas pipes and irrigation lines, to maneuver sprinklers and hoses in an effort to save the lawn and landscaping in the rest of the yard. I was weak from cancer and chemo; exhausted; and stressed.
If that weren’t bad enough, the incessant music from next door was so loud I couldn’t sit in my own house, with the windows closed, without feeling the boom, boom, boom of their outdoor stereo.
One night I simply stood in the construction site that had become my back yard, amidst the rubble that had become part of my life and I screamed. I screamed at the stars; I screamed at the neighbors; I screamed at the top of my lungs.
“If a tree falls in a forest and no one is around to hear it, does it make a sound?”
I was not feeling well and I went to Stanford for another consult. I was told to be prepared to go on the transplant list. The doctor believed my indolent cancer had not just come back, but had transformed to an aggressive lymphoma that, if untreated, would be fatal in a short period of time. The biopsies that were taken, would confirm this.
Except they didn’t. My cancer was back, but it was still not super aggressive. I could “watch and wait” for a bit. Over the next two years, the tumors grew. I began to resemble a chipmunk but it was hardly cute. When I felt a large tumor growing at the base of my skull, I knew it was time to consider another round of treatment. The thought of cancer in my brain was more than I could deal with. The lymphoma had also returned to my neck, face and groin, and internally was growing throughout my body.
By 2013, a new treatment had been approved: Bendamustine + Rituxan. I was optimistic. It was supposed to be much easier than RCVP and they were getting good remissions. I was ready.
Except that nothing went as planned. My hair wasn’t supposed to fall out this time, but about half of it did and hasn’t fully returned. I wasn’t supposed to be tired; but I was. It was supposed to be relatively easy; instead my hip failed. I was no longer able to do the things I loved. The tennis friends that hadn’t fallen away during the first round of chemo fell away this time, as they went on with their lives and mine was sidelined by cancer.
By this time I had Anti-Cancer Club up and running. I vividly remember lying in my bed, exhausted and discouraged, wondering if I was reaching and resonating with an audience? Where was I going with this? Should I continue? Could I continue?
The answer of course was yes, I had to continue, even if I wasn’t sure why.
This year, 2017, we are reaching about 2 million people per month, and growing.
What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
Wise and ancient sages tell us to live in the moment and to let go of our attachment to the outcome. I’m trying really hard.
The lawyers are finally conversing. The tech creeps do not care that my family is being destroyed, my house readied to be sold. Their world view does not coincide with mine.
I am trying to just let go of it all. In the meantime, I am getting ready to sell my (beautiful) house.
Priced well, I suspect the house will sell fairly quickly.
Which is good. I’ll get to Hawaii (my first stop on #CancerRoadTrip) for some R&R.
Which is sad. Chanel will move to her new home.
It’s a cat loving home. She’ll have a brother and a sister and two humans to manage. It will be better for her.
“Attachment is the great fabricator of illusions; reality can be obtained only by someone who is detached. ”
-Simone Weil
With Hawaii on the horizon, I keep imagining beautiful beaches; farmer’s markets; and a tour of local healing modalities. I imagine a few days just to reflect on things without the encumbrance of possessions, people, or plans. No attachment, to the best of my ability.
I recently picked up Herman Hesse’s book Siddhartha. It’s a story of one man who lives numerous lives in search of belonging and truth. It’s a timeless story that speaks to the human need to connect and to transcend. For the need to find wisdom amidst life’s experiences. I feel that I’ve shared so much of this journey, in my own way. One of my favorite quotes: “I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value” is true. And that, ultimately, is what #CancerRoadTrip is all about.
What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
The thought of moving is one that has been building gradually. It was a series of events two years ago that really got the idea moving, even before the tech creeps made the decision a financial fait accompli.
Two years ago, the hose to my kitchen faucet sprung a leak while I was out of town. From Scottsdale I listened as a restoration team cut open my wood floor to discover mold in the crawl space. Obviously the mold needed to be dealt with. But now the wood floor which covered nearly the entire house would need to be repaired and refinished. The kitchen island needed to be removed (and with it the stunning Italian marble top).
I had to locate wood to replace the floor (an exotic African hardwood. If I couldn’t find some in the US, it would be months before it could be shipped and seasoned for installation). I needed to find a new top for the island, have it fabricated and installed. And in doing so, change the look and feel of the entire room that had been so carefully crafted.
Everything from the kitchen island and side cupboards had to be removed. The island was disassembled. The contents of the cabinets were wrapped in bubble wrap, and packed in boxes that were stacked in the guest room and bath. The boxes covered every inch of the room and the bath, from floor to ceiling. And that wasn’t everything. Pots and the items in the lower cabinets still remained in place.
How much did I have in just one room?
Acquisition is the root of all suffering. -Buddha
While the house was slowly repaired (a 5 week job took 8 months—thank you insurance company), I rented a townhouse in a nearby community. It had a furnished guest room, and functional dining area and kitchen. The master bedroom was locked and reserved for the absentee owner. Two bedrooms upstairs were empty. A small work area was built into the wall next to the walkway that overlooked the downstairs.
The empty bedroom in back faced towards a hill of sage and brush. Some would say it was a plain view. I found it fabulous. It was totally private. I would sit on the floor with Chanel, enjoy the sun, and the view. Chauncy at this point was not well, and climbing the stairs was often difficult for him. I put some of his favorite throws on the borrowed couches downstairs, and let him sleep.
One morning in particular, I recall a scene of such extraordinary beauty, it took my breath away. The sage and grasses that covered the hill gleamed and glistened in the sun, and moved in the stiff winds. It was if I was seeing a different version of reality. Nothing had changed, but the hill was vital and very alive. Was it always so, or was this special angle of light and frost transformative? What limited my vision? Habit, light spectrum, chance?
Living in that little condo, I had almost nothing, yet I had everything I needed. I had my favorite pot, a few plates, the cats. Chanel took to walking the two story ledge overlooking the downstairs, wondering if she could make the jump. Chauncy was getting old and progressively sicker. He started losing weight and simply slept most of the time. I regretted having to move him from his home.
I also regretted that I couldn’t take advantage of the surroundings and walk. By that point my hip had deteriorated (steroids, chemo from the last round of treatment) so badly that I was in constant pain. I could barely get in the car and I couldn’t even walk through Trader Joe’s without my cane and the support of a shopping cart.
I finally moved back into my house (and moved all the furniture from the garage back into the house; unpacked the boxes from the guest room and re-created my kitchen; brought all the items from the condo rental back home). The pain I had to push through was beyond comprehension. The drugs that had alleviated the pain had to be stopped before surgery. My doctor had no idea how I was even able to walk.
In a week, I would be in surgery. I couldn’t wait.
The street to my house climbs a small hill, with a spectacular backdrop of the Sierras. Driving home, I didn’t feel the sense of place that was so important to me. If anything I felt unease, trepidation even. Somewhere in the pit of my stomach, I felt that I had become divorced from my home, from all the energy that had created it and connected me to it. Chauncy was clearly dying; cancer was having its continued impact on my quality of life. Deep in my soul, I knew things were changing.
It took me a year to get back on top of the property, including sorting through all the boxes, moving some things back into the house and giving others away, and restoring the yard and small garden that I had created under such duress just after the first round of chemo. In that year Chauncy–the love of my life– died and, unbeknownst to me, the emotional possibility was truly set for #CancerRoadTrip.
What is #CancerRoadTrip and how did it come to be? Read this post to get the backstory!
My family is of the feline variety.
I was never a cat lover. I actually used to tell dead cat jokes, laughing along the way. Cat in a microwave was, I thought, hysterical.
Then Maggie entered my life. One of the guys at the airfield where I flew in Pennsylvania had rescued her and since my dog had died, it was decided that I should take her home with me.
I remember looking at this kitten in a cardboard carrier on the front seat next to me.
“I’ve never been owned by a cat before, ” I explained.
“I’ve never been owned by a human,” she retorted.
Maggie became Miss Margaret.
Miss M was smart, beautiful and a bit stand offish. She was, after all, a cat.
Fast forward and enter Chauncy.
Chauncy was quite simply THE LOVE of my life. He was once again a rescue cat, and a Himalayan.
Miss Margaret hated Chauncy. I spent the better part of the year sleeping part of the night with her; part with him. Eventually I just found myself wanting to leave the house.
Then one day, Chauncy became weak and he wasn’t able to get up. I rushed him to the vet, hysterical, in tears, and sat with him until they threw me out for the evening. Over the next day or so, he simply recovered. When I brought him home, Miss Margaret decided that maybe he was ok.
Peace finally reigned in my house.
When Miss Margaret died, Chauncy needed a buddy. For a few months, I tried going with just one cat, to see if he would adapt. I went to Napa (Healdsburg) for a weekend and came home to a cat with no voice. He’d been wandering the house crying when no one came to be with him.
Himalayans do not do alone. Ever. At all.
So I went on a quest for a friend for Chauncy. I interviewed endless cats. He was so gentle and loving, and it was his turn to shine. I didn’t want him bullied by a newcomer . So I decided on a Himmie kitten: Chanel.
She prefers to be called Princess Chanel. She is a doll and she adored Chauncy. Everyone adored Chauncy. He was simply one of the most loving souls I’ve ever met, and everyone, everywhere who has ever met him, asks about him. He would jump into my arms when I walked in the door, and expect to be held while he purred his little brains out. Chancy had a 40 minute minimum.
I love all my animals, even some humans, but Chauncy was the love of my life.
Chauncy died this past year. With him gone, I have a fundamental decision to make. I either need to get another cat, or I need to find another home for Chanel. She is bored and lonely, and no amount of human companionship is going to make up for losing Chauncy.
The thought of leaving her brings me to tears. But the tech creeps, the legal bills, the Un-Affordable Care act, and the demise of ThinkTLC (my livelihood!) are all pulling us apart. My family is about to become fractured, separated, ended.
I feel sick simply thinking about it.
I’ve found Chanel a good home, with two humans to manage and two cats to play with. I’m handing her off on March 4th.
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.
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.
. It’s a story of one man who lives numerous lives in search of belonging and truth. It’s a timeless story that speaks to the human need to connect and to transcend. For the need to find wisdom amidst life’s experiences. I feel that I’ve shared so much of this journey, in my own way. One of my favorite quotes: “I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value” is true. And that, ultimately, is what #CancerRoadTrip is all about.
months before it could be shipped and seasoned for installation). I needed to find a new top for the island, have it fabricated and installed. And in doing so, change the look and feel of the entire room that had been so carefully crafted.
fabulous. It was totally private. I would sit on the floor with Chanel, enjoy the sun, and the view. Chauncy at this point was not well, and climbing the stairs was often difficult for him. I put some of his favorite throws on the borrowed couches downstairs, and let him sleep.
cats. Chanel took to walking the two story ledge overlooking the downstairs, wondering if she could make the jump. Chauncy was getting old and progressively sicker. He started losing weight and simply slept most of the time. I regretted having to move him from his home.
Then Maggie entered my life. One of the guys 
would adapt. I went to Napa (Healdsburg) for a weekend and came home to a cat with no voice. He’d been wandering the house crying when no one came to be with him.
aviation aficionado that gives her the love she deserves.
