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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Not the End of the World

Eek! I’m so excited – I put an obsessive amount of time and emotional energy into this essay.

 

 

This was published in Vanderbilt University Medical Center’s Momentum Magazine and tells the story of my four year journey to and on the Camino de Santiago.

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Kevin & I at the end of the world

I went to the Camino with a map and a plan to walk alone, but the universe conspired for something better. That something better goes by the name of Kevin Keystone. So, I’ll dedicate this to him and the universe for bringing me the medicine I needed most. My thank yous will be forever immeasurable.

Not the End of the World

To watch Kevin’s take on our voyage together, check out this YouTube video.

Cancer Survivor’s Day

As shared June 5th, 2016.

Just because I like to overachieve, I couldn’t stop walking when I got to Santiago. I’ve spent the last four days walking to, symbolically, land in Finisterre on Cancer Survivor’s Day. At one time this place was thought to be the end of the world. It wasn’t. And neither was cancer for me.

So with extremely bittersweet feelings, this particular Camino ends here. 19 non-stop days of walking, 600,701 steps, 258 miles (415 kilometers), 2,392 floors, countless thoughts to process and a new forever friend. 

I am SO lucky and grateful in more ways than I can count.