Taking cancer… for a road trip

Betrayal is defined as the “act of failing or deserting, especially in a time of need.”

For Pat Wetzel, she experienced not one, but two acts of betrayal, including one she carries with her everyday.

The first and most serious, was committed by her body.  You see, Pat Wetzel is battling cancer.  It is not only a dangerous opponent, but one that seems to be fighting her, as much as she is fighting it.

The second, was a business betrayal.

Wetzel created an online platform that focuses on compassionate behavior.  “ThinkTLC” (as in Tender, loving and care) was made to create positive energy and help those in need.

As great as the idea was, Wetzel says it was gone in a flash.  The “tech creeps” as she calls them, stole her intellectual property, leaving her with a legal battle that she can simply not afford.

Her focus needs to be on the most important betrayal, the one that consumes her body, and the one that allowed me to meet her.

For some background, I met Pat through Twitter.  I read her story, which I will get into in a moment because writing about her two betrayals is only a snapshot view into her life.  She is not one who wants to sit and wait for something to happen.  Despite the business betrayal, despite cancer, she is a woman who wants to live.

I emailed Pat some questions about her story and found her to be open about everything (you can read more about her at cancerroadtrip.com).

In fact, some of her answers were so complete, I needed to ask permission to shorten them, and in so doing, will tell you all to go to her website after reading this.

Back to her story.

If you look at Pat’s website, you’ll see it is cancerroadtrip.com.

How did she get that name?  That’s easy. She decided that fighting the business betrayal would get her nowhere fast, and she would rather find some peace in travelling.  In my mind, she deserves the peace travelling gives her.  In getting to briefly know her through social media, I learned she was first diagnosed with indolent lymphoma in 2009, and there were some clinical trials for which she might qualify to help her fight.

A more precise diagnosis showed Pat actually had marginal zone lymphoma.  Her doctors got it wrong, giving her a false hope of a clinical trial.  A tough treatment seemed to work, until her cancer came back two years later.  I can give no justice to the physical toll this round of treatment caused, but you can start by making the most painful thoughts, and multiplying them.

Last year, Pat sold her house and hit the road, which is where she was when I encountered her on Twitter.

Here is our brief conversation:

Where are you right now?

Serendipity (always a vital piece of travel!)  has led me to Santa Fe, NM where I am renting a wonderful casita in the country, just south of the Plaza. I wake to the sound of chirping birds, but all the art, activity and energy of Santa Fe is less than 10 minutes away.

Travel is interesting. I hadn’t intended to come here. But the heat and humidity in Central America were unrelenting. And I don’t do well in hot weather. With Christmas approaching, I pondered where I wanted to go.

Santa Fe, I thought. I’ve always loved Santa Fe.

And that simple thought changed everything.

What news was the most difficult to take, the initial cancer diagnosis, or the news you did not qualify for clinical trials?

Not qualifying for the trial was heart breaking because I’d invested hundreds of hours of research and effort. All my hopes were dashed. All my effort had been for naught.  I was back to square one and the cancer was spreading throughout my body.

The reason I didn’t qualify for the trial was that the cancer was originally misdiagnosed at the local hospital. In applying for the clinical trial at Stanford, they reassessed the biopsy. And they came back with a different diagnosis.

That left me with no option but RCVP or RCHOP, two chemo cocktails generally used for non-Hodgkins lymphoma. I did six rounds of RCVP, one every three weeks. Each took two days because I tolerated the Rituxan (the “R” in the acronym) so poorly.

So much of cancer is an emotional roller coaster. But even harder, was having the cancer come raging back not long after the nearly six months of RCVP treatment. This time, I was told I was going on the transplant list.

That’s a story unto itself.

Too many people don’t learn enough about their own medical issues.  Has your own research helped you deal with living with cancer, or made the setbacks even more frustrating?

Knowledge is always power, and curiosity and perseverance may just save you. There is a misconception that the doctor is all powerful, knows all, controls all. It just isn’t so. The medical system is horribly fragmented and the truth is if you don’t look out for yourself, no one will.

The list of mishaps in my treatment are a bit terrifying. My experience, which included a trail of poor communications, mistakes and downright medical ignorance, is hardly unique. It is simply essential that you take charge of your medical care.

Be informed. Keep your own records. Research your doctors and your disease. Advocate for yourself. It’s your life.

How much did you travel before you received your cancer diagnosis?

I grew up in a family that traveled. Multi-month business trips with my father turned into European expeditions into food, history and culture.  As a child I was more familiar with Paris than with New York which was just an hour from where I grew up.

In addition, my uncle was in the Navy, stationed in Villefranche sur Mer, just east of Nice and west of Cap d’Antibes. That meant summers in France, Italy and Greece.

How has travelling helped you as you battle cancer?

Travel heals.

About travel, from CancerRoadTrip:

“It’s as if you are suspended in time, in this cocoon of uncertainty and possibility, which is quite removed from the routine of day to day life. Of course it’s all in your head. Those possibilities always exist. It’s just unto you to see them, and for me, travel helps with that perspective.”

I am always up for a bit of adventure, although I would not choose cancer as the vehicle! But a road trip is the perfect metaphor for a cancer journey: Ups and downs; twists and turns; bump in the road.

For me it’s been a journey that has forced reassessment of almost everything in my life. When you realize you have limited time, it’s time to dig deep in your soul and ask yourself who you really are and what really matters. And to act upon it.

Learning, growing and challenging oneself, with cancer or not, is an essential part of a life well lived. As Paul Coelho says: “If you think adventure is dangerous, try routine. It’s lethal.” I think that’s one of my favorite quotes.

These days I’m on a quest for healing knowledge as I start to plan the CancerRoadTrip giveaways for others. The goal is to bring together people impacted by cancer in one stunning destination, led by thought leaders in mind/body medicine, and to capture it all on film for education and inspiration. Here’s a link with some more information.

Talk about the betrayal of the body versus the betrayal in business…

Cancer makes you vulnerable, emotionally and often financially. To have someone intentionally exploit that vulnerability for their own profit is simply horrific.

That betrayal, for me, meant I had to sell my house simply to survive. I had to find a home for my beloved cat, my only family. I found myself homeless with cancer. And I had no idea where I was going or what I was going to do.

So CancerRoadTrip started.

When was “that moment” when you decided to travel and enjoy life?

Travel with CancerRoadTrip, at the start, wasn’t fun. It was just an interval in limbo and uncertainty. Uncertainty about health, finances and even housing.

I didn’t know where I’d go, or what I’d do. And given the stress I was under, I was just waiting for my cancer to come raging back, just as it had before. Nodal marginal zone lymphoma isn’t curable and it can transform into a more aggressive lymphoma that can be rapidly fatal.

But I always love a road trip and slowly, I got into the rhythm of finding a place, landing there, and looking for the next location. Housesitting helped with the expenses. And a bit of travel serendipity always seems to be a part of my travels.

Funniest or best travel experience…

Oysters. The best experiences always involve oysters.

The best place I have visited is…

Ireland is a place that touches my soul and I will return. I want to drive, hike and photograph the Wild Atlantic Way. Along with so much of the rest of the countryside.

The place I absolutely have to visit is…

South America draws me. Peru in particular.

And Antarctica.

And Myanmar. And….

But if I had to choose just one place, it would be New Zealand, for both the beauty and the soaring. I would like to soar Mt. Cook.

And spend time in the Italian countryside, eating, traveling, photographing as I go, because I love all things Italy.

All I need is wifi.

And a bit of travel serendipity.

I want to thank Pat for sharing her story in such an open and honest way.  Please give her a follow on social media @cancerroadtrip and visit her website CancerRoadTrip.com.