A Road Less Traveled

If you ask a well traveled person where they’ve been, they don’t start with DC, Miami, or Los Angeles. They begin by telling you about their unusual and memorable adventures.

I traveled a road last week that was a road little traveled by head and neck cancer survivors. Here’s my story.

Two and a half years ago I had a Modified Barium Swallow test to assess my swallowing anatomy and shortcoming. I wrote about that test in the following blog entry (you may have to copy and paste this one):

hncancer.blogspot.com/2009/08/modified-barium-swallow-test

It’s worth a minutes to go to that blog entry as there is a 30 second video about what that test looks like. It’s the coolest medical test I’ve had. The Speech Therapist administering the test told me she had never seen anyone swallow like me. She then went on to say it was akin to how a sword swallower performs a sword swallowing feat. I had combined a technique known as a Super Supraglottic Swallow Maneuver with the ability to control my upper esophageal sphincter (UES) muscle. The UES is typically not under voluntary control.

As I was thinking about this (for the past 2.5 years – I may be slow, but I’m not stupid), I wondered last week if there was something I could learn from a sword swallower that may help improve my ability to enjoy more foods in a social environment. I searched the Internet for sword swallowers and found the Sword Swallowers Association International (SSAI) organization. The website contained a list of about 60 members who had been certified as legitimate sword swallowers worldwide. To be certified you have to actually pass a real sword swallowing test. After a little digging I saw that one of these 60 members lived within minutes of my house.

Many people would have stopped here, had a good laugh, and moved on. But, not me, I’m too stubborn. I reached out and contacted Jim Mackenzie. Jim is a performer (comedian, juggler, tightrope walker, etc) and he agreed to meet me at a Starbucks near our homes. And, as part of his performances, he swallows swords. Plus, he is funny, a great listener, and wanted to see if what he knew could help me.

Jim watched me swallow to assess, based on his own swallowing experiences as a human and a sword swallower, what part of my anatomy was and was not working. By the way, Jim is not a doctor, claims no expertise in this area, and did not recommend that I do anything. What he did do however is proceeded to show me (in a little hallway in the back of the Starbucks) how he learned to swallow swords (by way of demonstration) such that, if I of my own accord and free will, wanted to try these techniques. If and when I try these techniques, which Jim has spent years mastering; I’ll let you know how it works out. By the way, Jim did get a few stares from the Starbucks crowd during this private demonstration. Please visit his website at http://www.jimmackenzie.com/ if you are looking for a performer for an upcoming event. I think Jim would be a great addition and I’d like to thank him for taking the time and having the interest in helping me.

One rarely knows where life will take them. I thought this a worthwhile stop worth sharing about my cancer journey. It has taken me to places I never would have imagined before cancer.

Take care,
Ed

National Foundation of Swallowing Disorders (NFOSD)

I've been following the work on and off of a physician and PhD researcher, Peter Belafsky at the University of California Davis campus, for over a year and wrote about his work in a blog post in December 2010 (http://hncancer.blogspot.com/2010/12/swallowing-difficulties.html). I asked my surgeon about him last week. Although he didn't know him personally, he was familiar with his work as a physician surgeon who has focused on swallowing disorders. He is a medical advisor to the NFOSD organization. This organization (http://swallowingdisorderfoundation.com/) developed a documentary on swallowing disorders. Here's a link to that documentary.

http://swallowingdisorderfoundation.com/swallow-a-documentary/

The part of the documentary that resonated with me was by Sonia in a clip that began at the 30 second mark and ends two minutes later. For those of you who wonder what it's like to have swallowing difficulties, she hit the mark for me.

Ed

Health Update - Leap Year Day

I had a full day at my cancer center on Wednesday February 29, 2012. Blood draw at 7:30 AM, CT scan, and 3 separate clinic visits with my oncologist, surgeon, and dental oncologist. I received the radiologist's report of my CT scan results on Thursday; no local or metastatic evidence of disease. After 3 quick, life threatening recurrences in the 2005 to 2007 time frame, I've had no evidence of disease since October 2007 (4.5 years) and have been in remission since December 2009 (2 plus years). This is remarkable!

I'm not sure that my doctors will ever consider me "cured," but this is the next best thing.

Take care everyone.
Ed