Categorized | Inspirational, Support, Tips

Patient Snapshot: Ken from Florida (Part Two)

Posted on October 16 2012 by Pat Killingsworth | 593 views

Today, Ken shares some how he has been able to survive–and thrive–living with multiple myeloma.  Here is Part Two of Ken’s story:

Ken, Ann and Dr. Baz

So, what helped me the most?  First, I had to accept that I was powerless over the diagnosis—not what I did about it.   A daily gratitude list kept me from wallowing in self-pity. I refused to be defined by my disease.  Misery is optional and I make a choice to avoid the deliberate manufacture of misery.

Focus on the solution, and the solution gets bigger.  Focus on the problem, and the problem gets bigger. So, I kept picturing what it would look, sound, and feel like if it were improved. A picture of a tarpon taking a fly is my I-Pad background. Chasing big tarpon was beyond imagination in February; but, within possibility today.

Letting go of fear was the major challenge (not getting what I want, losing what I have, not looking good, losing control, becoming dependent, and giving up my illusions, myths, and faulty assumptions). For me, I had to let a Higher Power replace fear with faith.

Friends on my support team helped me get in and out of a boat—but I fished!  They even netted the heavier fish for me.  Twenty minute trips turned into a couple of hours.  Now, I fish at least five days a week.

Some times were daunting and I said that I could get through anything one day (or hour) at a time. Living fully in the now was the focus. Simply doing the next right thing was the plan.

My motto is “Spiritual principles would solve all my problems.”  So, my reaction to events and response to situations took on a different slant.

WHAT IT’S LIKE NOW
Well, it’s like living without multiple myeloma—only with more appreciation, more awareness, more empathy, and more urgency.  There is daily gratitude for the clinical trial and Revlimid.  There is profound thanksgiving for the kyphoplasty that fixed four fractured vertebrae and restored quality of life.  I appreciate the medical staffs that care for me.

There is realistic hope in research findings—balanced by morbidity studies (not to be read at bed time). But the fears can be faced as they arise.  Acceptance of a diagnosis allows me to deal with reality.  They tell me that Revlimid will eventually stop working—who knows when? Some of those 70 new drugs in the pipeline will probably go into plan B or plan C.

Relationships sustain me, faith strengthens me, family encourages me, friends cheer me, humor helps me, and fishing humbles me.

I could lose sanity worrying about statistics and lab results.  I do keep an eye on a few critical markers and take the meds as directed.  Self-reliance will only take me so far—so I need to turn to a spiritual resource.  It’s helpful to identify and stop doing what doesn’t work—with meds, behaviors, or thoughts.

Rather than squander energy with blame and resentment, I find it helpful to forgive others when they err, and make amends when the fault is mine.  We aren’t always patient patients you know—apologies are sometimes in order. I enjoy the ride while this disease is relatively stable and focus on helping others, practicing principles, pursuing fish, and squeezing every drop out of every day. Self-centeredness, self-pity, and selfishness vanish when I find myself sharing my experience, strength, and hope with others and seeking to make their day a bit brighter.

Amen, Ken!  Amen.  I will share more of Ken’s whit and wisdom soon.  He’s quite a character–and an all-around great guy!

Feel good and keep smiling!  Pat

2 Comments For This Post

  1. Holt Says:

    What a great attitude and approach to the day-to-day challenge of living with MM. Ken can come be my guru anytime.

  2. Beth Says:

    I am grateful for the inspiration Ken provides me since my Nov. 2011 MM diagnosis. How wonderful that Ken’s story is being shared with a wider audience. He truly helps keep things in perspective.

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  1. Patient Snapshot: 44 year old John Knighten | Multiple Myeloma Blog Says:

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