And Better Off for Living on the Edge of Life

P. has multiple myeloma, a particularly virulent and incurable form of cancer. Median survival is 50-55 months.

This is from a letter she sent yesterday to family and friends:

Yup. I am on the train, heading west. Not Kansas City, but Winona, MN via Amtrak. From there, a limo ride will take me to Rochester, Minnesota & the famed Mayo Clinic.

Today has been full of ‘deja vu’ experiences; it was almost exactly 15 years ago (October, 1994) that Husband 1 & I drove from [hometown] to Mayo Clinic, still reeling from the news of a dreadful diagnosis. I was suffering from a sinus infection in addition to a deep sense of despair. The multiple myeloma had invaded 90% of my bone marrow and I was severely anemic. Oooooh, what a difficult time it was — so many of you remember, especially daughter 1 and daughter 2.

Fast forward to today! Husband 1 is accompanying me again, since Husband 2 has very limited time off from his job. I am feeling good, my body having had 2 months without the effects of chemotherapy.

Life at home has finally settled into a wonderful rhythm. I breezed through thirteen days of radiation treatments focused on a lime-sized growth on my ribs. These lasted less than 5 minutes & the only side effect was perhaps some fatigue. Most days, I car-pooled with the husband of a dear friend who was also receiving radiation. So the process was quite enjoyable (and was moderately effective, though there is still a growth, the size of a fried egg — sunny side up).

The issue of what to do next was still unresolved. My decision to turn down the clinical trial at State U. was a clear one. However, it brought recognition that I was facing the beginning of the end (Aren’t we all? Every day?)

This decision – to focus on quality rather than quantity, was filled with both sadness & a sense of freedom. Along with making sure that all my affairs were in order (they aren’t – yet), I relished spending time in our woods, either sitting under a favorite tree & listening to the birds heading south, or cutting, hauling, splitting, & stacking wood for our fireplace/stove. We are planning a trip to California over Thanksgiving. I am holding onto the possibility of traveling to both Europe to visit Daughter 2, and a trip to Hawaii with Daughter 1. Have you seen the movie “The Bucket List”? There I was.

Then came a series of events, both big & small, that absolutely FILLED me with energy, enthusiasm, hope, and a sense of direction. To make this story short, I ran across a clinical trial going on at Mayo Clinic that looks very hopeful, requires minimal change in my daily routine, and I believe (fingers crossed) will accept me. This all occurred in about one week, everything falling into place.

Over the past FIFTEEN years, I have come to points such as this, where the end appeared near. And each time, something has shifted. I am here; filled to overflowing with gratitude, surrounded by love, a bit worse for the wear, but thoroughly enjoying the ride.

And better off for living on the edge of life.

2 replies
  1. creatin
    creatin says:

    I have some good lines to post here:

    Living on the edge, you ever been there? 
    It’s scary at best, a challenge to dare
    Get out on a limb or walk in the dark,
    Just trusting in time your ship will embark
    Upon calmer seas, and light will break thru,
    To prove once again God’s faithful to you!
    Not just anyone will live on the edge,
    It may bring distress or create a wedge-
    For when you decide you aren’t close enough
    To God, you will find the going gets rough!

  2. Sandy Styer
    Sandy Styer says:

    Charlie: P. expresses beautifully the gifts of a life-threatening or terminal illness: seeing life as a spiritual and physical adventure, treating herself as a whole, integrated being.

    I’m using the word treat here very consciously, both in the medical sense of getting treatment for the illness and in the sense of giving herself a gift, a treat.

    In my own journey, one of the greatest comforts for body and soul I found was receiving the Reiki treatments (or Reiki treats?) offered at the Carol Simon Cancer Center at Morristown Hospital. I recently got a chance to thank- in person – the wonderful Pamela Miles (@Wellth or who’s been instrumental in bringing together western medicine and spiritual healing.

    My prayers go out to P, and my gratitude to you for sharing her letter.


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