My Double Life

The Mount LeConte Lodge in the Smokie Mountains is a special place only accessible by foot and booked a couple years in advance.  I had never heard of it, but when my Camino group was lucky enough to secure a reservation for July 7th, I jumped at the chance. Little did I know the hike would be on the heel of a new chapter in the cancer saga.

In May I had my first Gallium-68 scan (read about that here), which revealed disease not detected in my previous MRIs. I knew something was going on due to my blood tumor marker results and onset of facial flushing, a common symptom of Neuroendocrine and Carcinoid Tumors. My specialist, Dr. Edward Wolin, recommended Peptide Receptor Radionuclide Therapy (PRRT).  While PRRT has been done with much success for 20+ years in Europe, it is pending FDA approval in the United States. Fortunately, there is a clinic in Houston (Excel Diagnostics) who has been granted permission to perform this treatment. With Dr. Wolin’s help, I was able to get scheduled this week (July 10-14) after the 6-week waiting period from my last Lanreotide injection expired. Because the treatment is not approved, we are not sure if it will be covered by insurance and guess what?  It ain’t cheap. So, please stop here and join me in saying a prayer that insurance will do it’s job.

With the Mount LeConte adventure scheduled two days before the Houston departure, I contemplated if the hike was a smart idea and (quickly) concluded that as long as I felt good, I was not going to let cancer ruin yet another life plan.

At 6,593 ft (2,010 m) Mount LeConte is the highest peak in Tennessee and one of the highest in the Appalachian Mountains. I decided I should do a little training so I spent some time at Radnor Lake climbing up and down the ridges. During those hikes I felt awesome and ready for Mount LeConte, but on Independence Day, I was pooped after only 750 feet of elevation giving me reason to doubt myself. Backing down doesn’t compute in my brain so I told doubt to get lost as I packed my backpack full of gear and short acting Octreotide injections which I take three times a day now that my Lanreotide has run out.

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8:20 and ready to climb

There are a few trails to Mount LeConte and my husband and my(reluctant)self picked Alum Cave, which happens to be the shortest, but most difficult of the routes. Our group of four departed the trailhead at 8:20 a.m. It rained the night before and most of the hike was a walk upstream. Alum Cave is described as scenic but I couldn’t see anything due to fog. I was grateful for ignorance during the often stretches of metal cable on my right and an invisible drop on the left. It was hard. I was sweaty and tired, but 11:30 a.m. we strolled into the Lodge to find ourselves the first arrivals of the day. Put that in your pipe and smoke it, cancer.

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The Lodge was an experience! We were told to bring our own towel, which I incorrectly associated to a shower. When the receptionist bragged about a hot water spigot and flush toilets, I knew wi-fi was out of the question. It turned out to be a welcomed change of pace. Once the fog cleared, the vistas and quiet were appreciated. With sunrise came blue skies and a leisurely, but fast, descent from the top of Tennessee. At the bottom of the mountain, we packed up, stopped for lunch and headed home to our wonderful indoor utilities with enough time to re-pack for today’s (July 9th) departure for Houston.

I am so grateful to have spent some time disconnected in nature which provided me with the opportunity for noise-free reflection. This trip had me thinking about how I am full of contradictions and extremes. One day I am climbing mountains and the next day I am off for a cancer treatment. I am stronger and in better shape than most, but not healthy. I climbed up the mountain in the fog and down in the sun. I have no in-between. No average. No middle-of-the road. No even keel. I love this. I hate this. Who wants to be average? Me. I would love to be normal, but then again, I probably wouldn’t.

As always, prayers, thoughts and good vibes for the treatment to be successful are appreciated.  An offering to the insurance Gods would be welcomed too.

Upward and forward.

NET Friends – Stay tuned for blogs on my PRRT experience at Excel Diagnostics in Houston.

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Cancer Camp

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As featured on curetoday.com

During treatment, a fellow survivor friend raved about her experience with an organization called, First Descents (FD). FD is a nonprofit that takes young adult cancer survivors on free adventure trips. Yes, yes and yes. I liked them on Facebook, signed up for their newsletter and went on with the business of getting well.

After surgery and completing chemotherapy, I started to feel more like my adventurous self again. Also around this time, I received an email about First Descents 2016 programs which included rock climbing, whitewater kayaking and surfing at various locations throughout the United States. All of them sounded like fun, but I chose surfing in Santa Cruz, California. I’d never surfed before, but have tremendous respect for the sport. I’d equate watching surfers to watching fire – mesmerizing. The intuition to read the ocean, defy the odds of a wave and staying calm during an inevitable wipe out are all impressive and admirable qualities. Surfing and cancer don’t sound so different.

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Stunning Pigeon Point Lighthouse (and where we stayed for the week)

Arriving at the San Jose International Airport, I was immediately spotted by the other campers. The short hair and baseball hats are usually dead giveaways for us women cancer survivors. After a curvy drive over the coastal mountains, we arrived at our home for the next week – Pigeon Point Lighthouse on the Pacific Coast Highway. It was a stunning location.

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Cowell’s Beach in Santa Cruz

The next day, we arrived at Cowell’s Beach in Santa Cruz and were lead by Richard Schmidt’s Surf School. Little did we know then what a legend Richard Schmidt is in the surfing community. Surf Splendor Podcast even called his school, “the oldest and most prominent in the world.” Richard and his instructors were extremely kind, humble, encouraging and considerate to our motley crew and we all felt honored to be taught by masters. Once we got our wetsuits on and a beach quick lesson, we were let loose in the water. The first day, I struggled and never got up on my board. Surfing is hard for a strong, fit person, but it’s even harder when you’ve been taken apart and pieced back together by surgeons like many of us had been. We all kept at it and to my surprise, the next day and the rest of the week, most of us were able to get up and ride some pretty sick waves, as they say. A day of surfing was reminiscent of how you feel as a child after a day of swimming – happy, satisfied, starving and exhausted.

Some of my favorite moments throughout the week had nothing to do with surfing, but from being in a group where I could joke about cancer. This is not something I’m able to do too much in my regular life because it’s usually met with a stern “not funny” look from my husband or other family members. We all cracked up when someone made an origami fortune teller and joked that’s what doctors use to determine the number of rounds of radiation and chemotherapy. Or demanding to see a port scar as a means of entry into our living area. Laughing about having cancer flare-ups to protesting something we were about to do. Joking that if you put all our body parts together, we made up a whole person. How refreshing it is to be in the company of people who could actually understand these types of morbid jokes and genuinely laugh with you.

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The ladies with Richard Schmidt

Another powerful moment was when us girls stood in the living room revealing our scars. Mine have never been seen by anyone other than my husband and medical staff, so this was pretty big. I saw many nipple-less breasts and they saw my ginormous abdominal scar, which is the shape of a Mercedes-Benz logo (the actual surgical incision name). It was a liberating moment and I would’ve never done this with any of my non-cancer friends.

I’ll remember this experience and the stories of my brother and sister cancer fighters forever. First Descent’s motto is “out living it.” We had all been through so much, but were still here, out living what has killed others, together, in more ways than one and that was pretty rad, as they say.

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming ‘Wow! What a ride'” – Hunter S. Thompson

To learn more about First Descents, check out their website at www.firstdescents.org

Read this on curetoday.comCancer Camp

Read all my articles with Cure.

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The “Minimavs” Team

 

My Weekend on a Hippie Commune Famous for Midwifery

Here’s a post I never thought I’d write.

Years ago, I watched a very intriguing Netflix documentary, starring Ricki Lake, called The Business of Being Born. The movie explore’s the United State’s birthing system and how midwives have been pushed out of the equation.  The movie was so popular, that a sequel was filmed. In (the creatively titled) More Business of Being Born, (trailer below) Ricki Lake visits the Farm and interviews the world’s most famous midwife, Ina May Gaskin. Being very intrigued by this woman, I Googled her and discovered that she lives less than two hours away from me on a hippie commune that started in the 70’s called, the Farm.

A detailed history of the Farm can be found here. But in a nutshell, in 1970, 60 school buses, full of hippies, traveled across the country from San Francisco, in search of a place to live the lifestyle they wanted and to raise their children in a sheltered, peaceful environment. During their community’s establishment, many of their women were pregnant and without health insurance, so the easiest solution was for them to become midwives. Later, while the nations cesarean section rate grew, theirs diminished. Currently the Farm Midwives have a 94.7% home birth success rate, a 1.7% c- section rate and a 96.8% success rate of VBAC’s. More stats can be found here.

And so the adventure began. Along with two friends from Michigan, I registered for “Farm Experience Weekend”. The weekend promised hikes, workshops on vegan cooking, organic growing, midwifery and a taste of what it’s like to live off the grid. Amy, Kim and I were both excited and scared as we packed the car with enough supplies to live in the woods for a week. We had no idea what to expect. Will there be electricity? Will they have hot water? What will we do for protein? Should we bring toilet paper? And the most important question, will there be cell phone service? I’ll spare you the answers to each of these questions and just show you our accommodations at Phil & Mary’s house.

Phil & Mary's house

Phil & Mary’s house

Amy relaxing in our "rustic" accommodations.

Amy relaxing in our “rustic” accommodations.

Hot tub, anyone?

Hot tub, anyone?

The grand porch overlooking the woods at Phil & Mary's.

The grand porch overlooking the woods at Phil & Mary’s.

Our living room

Our living room

The weekend began with a very yummy meal at Doug, the organizer’s house. Enchiladas with salad. Everything, made and grown by him. Followed by soy ice cream from the Farm’s soy dairy. After dinner he gave us a tour of his garden, where he proudly gave us the secret to large, homegrown, organic onions. Pee. Yes, kids, you read correctly. Human pee. I thought Amy, was going to make a run for it. From that point on, every time a meal was presented, we’d very passively ask, “This looks yummy. What was it made with?”

Saturday was jam-packed with more homegrown meals, a meeting with the principal of the Farm school, a visit to the Eco-Village Training Center, tours of alternatively build homes and a hike on their private land, followed by a community dinner.

The most interesting part of the day was our visit to the Farm school where we spent time talking with the principal/janitor, Peter Kindfield. A former educator in the New York City School system, Peter came to the Farm looking for something completely different. Their school, of 30 kids, is a collaborative. The students dictate the curriculum and the teachers oblige. If they don’t want to do something, they don’t. Now, I know what you’re thinking – the kids aren’t learning jack and probably play video games all day. Surprisingly, it’s quite the opposite. Nearly all of their students make smooth transitions to universities. However, they are encouraged to attend the local community college before hand so they won’t be shocked when they enter the real world. Did I mention that Peter Kindfield has a Ph.D. in math and science from Berkeley? Yeah, he didn’t either.

In the Farm school talking with the Principal and Janitor, Peter Kindfield.

In the Farm school talking with the Principal and Janitor, Peter Kindfield.

However, my favorite part of the day was meeting some of the famous Farm Midwives that I’ve seen in movies. We actually had dinner with two of them, Joanne Santana and Carol Nelson, who were featured in a new documentary about Ina May Gaskin and the Farm Midwives called Birth Story. Also our host, Doug, is married to another star midwife, Debra Flowers. We were seriously star stuck when we met them, but tried to play it cool.

After a full day of activities we were pooped and turned in early. Sunday was spent being a groupie with Debra and begging her for birth war stories. The afternoon plan was to attend a community drum circle, which sounded like their version of church. However, we had all the crunchy we could take and headed back to Nashville for a burger and beer.

Detroiters at the Farm. I wonder if that's a first.

Detroiters at the Farm. I wonder if that’s a first.

Since I know you’re intrigued, here are a few more fun facts and resources:

  • The Farm isn’t a commune anymore. Back in the day, if you wanted to join, you had to drop your processions at the entry. In 1983 the community voted to become a cooperative. Therefore, community members now pay dues, an entry fee and own the land collectively.
  • You can pretty much live the way you want. The only rules are 1) No weapons and 2) You can not raise any animal for slaughter.
  • The Farm currently has a little over 100 residents.
  • If you want one of the Farm Midwives to deliver your baby and are not local, you can rent one of the “birthing cabins” on the property. Details on that are here.
  • The Farm isn’t just midwifery. They have many other businesses and charitable organizations.

The Farm website: http://www.thefarm.org/
The Farm school website: http://www.thefarmschool.tv/
The Business of Being Born community website: http://www.mybestbirth.com/
The trailer to The Business of Being Bornhttp://youtu.be/4DgLf8hHMgo