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.