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THE DREADED “YOUR NEW NORM” (PART 2)

[Editors note: THE DREADED “YOUR NEW NORM” is a two-part series written by Jim Rose. This is the second part of the series. Part 1 can be viewed by clicking here.]

As I became more physically fit I was sent to a physical therapist named Mike Vito.  This young man was very adapt and thorough at his job.  He pressed me to seek answers from my surgeon that he couldn’t find in my surgical reports.  It turned out that the nerve that made my rotor cuff work had to be severed in order to place my pectoral muscle in my throat.  With this knowledge Mike designed a lifelong exercise program that would help me regain use of my right arm.

A little more than a year after surgery, we finally received an offer on our home in MI.  My very talented surgeon (Dr. Robert Mathog) agreed that I was healed enough to make a move to TN.  Nan and I made the move and built our dream home in Fairfield Glade.  Even while building our home, things were still shaky at times for me.  Radiation had weakened my immune system and infections were once again a continuous issue.  After consulting with Dr. Mathog, he noted it is not uncommon for a person’s body to reject a titanium plate after receiving radiation at the site of the implant.  The ENT surgeon I had seen in Nashville, refused to remove the plate, as he feared my lower jaw, would become too loose to function.  In Cookeville, the young ENT doctor I started seeing (1.5 hours closer to home then Nashville) had considered removing the plate until he reviewed my scan and realized the plate extended to an area where a slip could cause blindness.  Thus my wife and I made the 9.5 hour drive north for Dr. Mathog to remove the plate.

Not finding much benefit from a local cancer support group, I learned of a head and neck canncer (HNC) group at Gilda’s Club in Nashville, TN.  We made our initial 4 hour round trip drive in April, 2013 for a meeting.  This group was enormously beneficial.  I met Barb, who was the one person having nearly identical surgery as mine.  It was very assuring talking with Barb, because we shared a lot of issues, difficulties and sensations.  Not only did Barb and I exchange some things we had tried to improve our situations, but others had thoughts, as well.  Lori (who had tongue cancer) told of using a “baby spoon” to help move food to an area where she could work it.

As I am rapidly approaching my fifth surgery anniversary, I still have issues.  I find travel to be iffy, as about 80% of restaurants will not puree food.  The fire to prove that “your new norm” will turn into my old self again has dwindled to a smolder, but has not extinguished. I feel the embers are about to be stoked as I venture to return to at least processing soft foods.  Thus, I now realize I will never return to the person I was, but I will be closer to it than anyone believed was possible.

I believe there are many lessons to be learned from those who have gone through head and neck cancer (HNC) procedures:

– Place your trust in God

–  Be ready to endure the fight of your life

– Research as much as possible

– Trust your surgeon’s opinion, ensure he agrees radiation and chemo are required for your case

– Find a support group (preferably prior to your procedure – you will get better answers than you get from the “text book” answers the doctors have)

– Understand that there will be a “NEW NORM” (but you can have results better than predicted)

And lastly

– Try to find humor, as you take this journey (i.e. Halloween night 2009, while my wife ate dinner with her sister as I tried to be gallant and answer the door for the trick or treaters. Can you vision the kids seeing a scruffy old coot with an IV bag hanging from a pole that he had forgotten to turn off and was leaking from his stomach tube?)

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[Editor’s note. We welcome your thoughtful comments! Name (at least a first name and last initial) and email address are required. The email address will not be displayed with your comment. We moderate all comments.]

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Food for thought is providing comment posts

How does your experience compare with Jim’s?

What is one thing you learned from Jim that you could apply to your own situation?

If you’ve experienced a similar situation, what helped you cope with your experience?



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