My Double Life

July 9, 2017July 9, 201713 Comments

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.

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.

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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Review: The Forward Podcast

June 30, 2017October 12, 20171 Comment

the forward podcast lance Armstrong Chances are, you already have an opinion of Lance Armstrong.

I was familiar with him when I pick up his book, “It’s Not About the Bike” in a Singapore hostel library in 2010. It was a hot, rainy day, so I spent the afternoon devouring the book and found his story incredible and inspiring.

The subject of Lance Armstrong created a household divided. My husband, a french national, grew up watching and spectating Le Tour de France and concluded he was doping, because no one could achieve what he did without performance enhancing drugs. I, a proud American, and lover of an inspirational comeback story, defended Armstrong and concluded my husband was just jealous, that an American was superior. So, when the scandal broke in 2012, I had to eat some of my words. I wanted to believe this incredible athlete clawed and scraped his way from rock bottom (a serious cancer diagnosis) to sky high (winning Le Tour de France multiple times). After much thought, I decided was still a fan, he’s still inspiring and his comeback is still incredible. Sure, he lied, but raise your right hand if you’ve ever lied. Next, raise your left hand if you’ve ever made a mistake. Yup, everyone in the room just raised both their hands. As Bill Burr says, “Lance Armstrong raised $500 million dollars for cancer research. That’s what that lie did.”

However, in 2014, I was diagnosed with cancer. I would occasionally think about Lance Armstrong and was baffled that someone with metastatic cancer would take such a risk by taking performance enhancing drugs that could potentially fuel cancer cells in his body. It all seemed irrational to me. Even so, as a (former) endurance athelete and cancer surivivor, I can’t help but look at Armstrong as a role model. While he’s no longer associated with Livestrong, he is the embodiment and icon for what it means to continue to persevere through tremendous adversity.

Recently, I have become reacquainted with Lance through his podcast, The Forward. I was surprised to find him a great interviewer. I look “forward” to his podcast every week. The name, The Forward, came from his cycling buddy. When he and his friend were out on a ride and would come to an intersection, instead of saying, “Lance, go straight.”, his friend would say, “Lance, go forward,” And this has stuck with him because that’s the way he wants his life to go. Isn’t that what we all want – to keep moving forward?

On his podcast, he has also talks about the word, suffering and how he believes it is the most interesting, definitive word in the English language. I think I agree. Suffering is a word that scares me, but has also taught me more than I can begin to describe.

Now, if you’re a cancer survivor, athlete and/or a lover of podcasts, you should check out The Forward. Here are a few good interviews to start with: Simon Illa, Neil deGrasse Tyson, Rahm Emanuel, Bo Jackson, Michael Franti, Eduardo Garcia (shout out to First Descents) and Dave McGillivray.

Pausing, Slowing Down & Reducing the Noise

June 15, 2017June 15, 20172 Comments

As featured on curetoday.com

In his book “Information Anxiety” (1989), Richard Wurman claims that the weekday edition of The New York Times contains more information than the average person in 17th-century England was likely to come across in a lifetime. I am curious how that statement would change given the speed of information and life in 2017. Of course, I am so grateful for the significant impact this surge of information has created in the cancer world. However, the biggest downside of the increased velocity is a world with so much noise. Add cancer to this equation and it’s no wonder anxiety accompanies the disease.

Gandhi said, “There’s more to life than increasing it’s speed,” and it took a cancer diagnosis in September 2014 for me to understand the meaning of this quote. Information overload and busyness has become a chronic disease in our society. It seems as though everyone wants to move through life as fast as possible and news pours on us before we can formulate our own thoughts. I think it’s quite sad. None of us will be on our deathbed wishing we moved through this world more rapidly. Everybody and everything wants our time and attention, which are two of the most precious commodities for a cancer survivor.

Illness did not just force me to slow down – there was a chunk of time where it pretty much stopped me in my tracks. I went from endurance athlete to bed ridden in a matter of months, which was humbling and an experience filled with valuable lessons. As a result, I learned that the slower I go, the more I can actually accomplish well. Slowing down allows me to live with quality, in the moment. And most importantly, decreasing my pace has made me acutely aware of the outside noise that distracts us from the life’s most important things, which aren’t things at all. They are our relationships and health.

I am very fortunate that I did not have (or want) to jump back into a busy life after going through active treatment. My life gives me the option to say, “no,” which I do often. When I’m in a particularly noisy period, I don’t just slow down the intake of information and activities, but do my best to pause all together in order to put all my time and attention into my personal self-care. I give myself the time and space to do my favorite things which include writing, yoga, reading, sleeping 8-9 hours, taking naps, meditating daily, writing my prayer and gratitude list, taking walks (gasp) without a device and reduce my time on the internet.

Whether you’re a cancer survivor or not, EVERYONE could benefit from slowing down, pausing and reducing the noise to enjoy the only guarantee any of us have, which is the present moment we are in.