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

 

Montreal: Canadians are Hard Core

My husband has been pining to go to Quebec for years, but because I am the travel planner, it has always gotten overruled by a more exotic destination. So, when he was asked to attend a two-week training in Montreal, I decided to ride his coat tails, once again, and take advantage of the company paid, downtown hotel room. Plus, it was Valentine’s weekend and what better place to spend it than in a city that is a perfect mélange of our two cultures and languages.

I know what your thinking. Who goes to Montreal in February? I spent 31 years in Detroit and could handle a weekend in Montreal. BUT I didn’t expect it to be the coldest damn winter in 20 years. Let this Buzzfeed article put things in perspective: 25 Truly Terrifying Photos of the Snow in Eastern Canada.

Not exactly motivating to get out of bed and "Carpe Diem".

Not exactly motivating to get out of bed and Carpe Diem.

We arrived late Friday night and quickly jumped in a warm taxi to our hotel. Saturday, we set out to have a hardy breakfast and do our normal marathon sightseeing. Within a block of the hotel, we realized our hats, gloves and shoes were not going to cut it if we wanted to keep our extremities. A few more blocks and the husband got desperate. I spotted a shop with more appropriate gear and we were like moths to a flame. $80 was spent on warmer hats, mittens and socks. A minor investment to protect this blogger’s typing fingers.

With a 20 degree increase in our core body temperature, we popped into a great little diner for breakfast and reevaluated our strategy for the day. I didn’t want to lose any toes so I suggested we throw in some indoor activities. The wait staff overheard us and chimed in with a couple great suggestions and detailed instructions on which bus to take. It’s true, Canadians really are so nice.

Normally, we are not museum people and would rather spend our time in a city walking around parks, districts and ports, but Montreal is the exception to the general rule. So off the Biodome and Planetarium we went.  The rest of Montreal had the same idea because the place was packed with other smart people who wanted to avoid hypothermia. Both venues were really well done, warm, indoors and worth every penny. Did I mention they were warm and indoors? We spent a few hours there and decided it would be a shame to let the jacuzzi at our hotel go to waste at a time like this. I can promise you, never has a hot tub been more appreciated.

Bundled up in Old Montreal

Bundled up in Old Montreal

We didn’t stay long because it was Valentine’s Day and we had dinner reservations at a 5-star Yelp reviewed restaurant called Santa Barbara. It did not disappoint. Situated in a quaint little residential neighborhood, the cozy restaurant had unique dishes that accommodated me (the plant eater) and my husband (the meat lover). Warm, happy and stuffed we must have forgotten the meteorological situation when we decided to take a walk through Old Montreal after dinner. The tiny streets and walkways were adorable and made us feel like we were in Europe. In about 30 seconds we were near frozen and stopped in a creperie for dessert. The price of the crepe was worth the heat, but let’s just say Montreal chefs should stick to poutine. Officially in a food coma and sick of not being able to feel my toes, we headed back to the hotel. It was one of the coldest walks of my life….until Sunday…and Monday, for that matter.

Prior to arriving in Montreal, we had read about the underground city and Sunday we set out in search of this elusive area. After several wrong turns and asking a few locals, we found what was a ginormous underground shopping mall. I was picturing Parisian catacombs and not the Mall of America, but whatever – it was indoors and warm, which was our only requirement at this time.

It was too cold to take pictures, but this one from Google captures Parc du Mont Royal perfectly.

It was too cold to take pictures, but this one from Google captures Parc du Mont Royal perfectly.

By lunch, the sun was deceiving shining and we decided when in Rome, do as the Romans do. So, cross-country skiing we went. Oh! My! Gawd! I have never been so cold in all my life. I nearly cried because the wind was so fierce and frigid. Normally, I break a nice sweat during cross-country, but I stayed frozen the whole time. However, what was most shocking was the all Canadians soaking up the snow. They were running, walking, playing, ice-skating, cross-country skiing and snow shoeing without so much as batting an eye. I will admit that the scenery was beautiful. On top of Parc du Mont Royal, we were surrounded with snow-covered trees, blue sky and views of the city below.  After a couple of hours, I had enough and wanted to teleport to the jacuzzi. Waiting for the bus was treacherous. My feet where officially white and my lips purple when we finally made it to the hotel.

Hey Girl, It's cold outside.

Hey Girl, It’s cold outside.

It’s hard to believe that Monday was supposed to be coldest day after the events of Sunday, but it was true. Preemptively, I decided we should go to the Warhol exhibit at the Fine Arts Museum. So, we waited for the bus, only to arrive and find it closed because it was a Monday. Therefore, we went to the more touristic Grevin Wax Museum. While less culturally stimulating, it was probably more fun than Warhol. With nothing indoor left to do on our list, we surrendered and spent the afternoon in the hotel jacuzzi. I was done with the cold and have no regrets.

I was ready to go home, but my Monday night flight back to Nashville was cancelled due to an ice storm in the south. One would think a travel warrior like myself might take advantage of the extra day and take in that Warhol exhibit. Nope. Slept in and went to the jacuzzi instead.

Yes, the cold was unbearable, but we still enjoyed the weekend. I loved speaking French with the Québécois and loved that when I got stuck, I could bounce back to English without missing a beat. Montreal is a beautiful North American city, but I don’t feel like I experienced it in all its glory, so I hope to return one day, preferably in July. Until then, Canadians, I salute you and your ability to endure these extreme conditions. You are hard core!