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THE DREADED “YOUR NEW NORM” (PART 1)

SCAN0223[Editors note: THE DREADED “YOUR NEW NORM” is a two-part series written by Jim Rose. This is the first part of the series.]

My name is Jim Rose and in 2009, eight months after retiring from a 47 year career in the auto industry, I was diagnosed with stage IV oropharyngeal and pharyngeal squamous cell carcinoma.  Within 3.5 weeks I was biopsied, scoped and put through 10 hours of radical surgery.

Like so many others when told the big “C” had invaded my body, my world was shattered. Suddenly all the dreams of a happy, healthy and active retirement were crushed.  The priority became getting my estate in order as I was given a 50/50 chance of surviving surgery and a 50/50 chance to live five years after surgery.  My wife Nancy and I prayed, cried and tried to stay positive.  Upon checking in for my pre-opt paperwork at Karmanos Cancer Center in Detroit, MI I saw so many 6- 8- and 9- year- old kids going through cancer treatment that my self-pity was put into perspective.  I realized that I had been very fortunate to have lived as long and relatively as healthy as I had.  This fact helped me to become at ease, but still scared with the daunting surgical procedure scheduled for the next day.

Not only did surgery involve removing the large tumor in the tonsil area I knew about, but also 56 lymph nodes, 2 teeth, three-fourths of an inch of my lower jaw and a portion of my tongue.  Putting me back together required a 44” incision (from behind my right ear to below my right pectoral), 66% of my right pectoral (which provided me with a whole new meaning for the term “coughing up fur balls”), and a titanium plate.

After surgery I had a few rough nights where I told myself I made it this far, I am not giving up now, I am not ready to go.  All the time my wife or son was by my side, even if I was not always conscious. I started healing, and was placed on a feeding tube, even though I was able to eat soft foods.  Then I began radiation and chemo treatments.  The strongest doses of both had been prescribed for me and I became a total zombie.  Nancy had her hands full taking care of my medical needs and chauffeuring me to treatments and appointments some 50 miles from home (sometimes with the IV feeding bag hanging from the sun roof).  Nan provided “tough love” at times to make me move on my own.  I had received two thirds of my radiation and chemo treatments when I developed a fistula (an abnormal connection from the radiation treatment) and the remaining treatments were cancelled. By this time radiation had further compromised my ability to swallow food. As infections became an issue further surgery and HBO (hyperbaric oxygen) chamber treatments were a way of life.  When I became well enough I was sent to a speech therapist to help improve my speech.  I also found a cancer support group in Troy, MI.  It was during my initial visit with the speech therapist and support group that I became aware of the term (I came to hate) “your new norm”.  I was told despite my best efforts to get off a feeding tube this would become a way of life.  I meet people who had been using a feeding tube for 4, 7, 8 years.  Being a stubborn Taurus and having a Marine Corps fundamental (FORITUDE – the strength to persist, the courage to endure) instilled in me, I became determined to prove everyone wrong.  After the second time my feeding tube accidently came out I refused to have it reinserted. As a consequence my diet consisted mostly of milk shakes made with ice cream, peanut butter and instant breakfast.

Nancy discovered she could blend some softer foods into “baby food” consistency that I could wash down with water and my diet expanded.  Then we found the Ninja blender.  This system will puree anything to a form I can handle and it opened up endless dietary options.  Anything Nan cooks can now be pureed to a baby food consistency.  However, be aware pureeing will intensify flavors, especially spicy foods.

Please check back in a week to learn how Jim is living with his “new norms.”

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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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