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And Better Off for Living on the Edge of Life

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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.

An Honest Wedding

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I went to an unusual wedding last week in Western Michigan.  It doesn’t matter whose (except to note it wasn’t mine)—call them John and Jane.

Bride and groom are both in their early 50s. She has two daughters, each in their early 20s. He has a son 16 and a daughter 11. It’s a second marriage for both.

The minister defined eclectic; she had spiritual credentials from several traditions. The ceremony featured candles and white rose petals, and was held upstairs from the minister’s husband’s bike shop.  Of the nine attendees (which includes bride, groom, minister and children), five of us chose the optional bare feet mode.

The minister said:

Like all weddings, this is a joyous celebration, a union of two soul-mates who have found each other.  A time for joy.

Yet joy isn’t the only thing that happens at a wedding like this.  There are three others who are not here, but whose presence is very real, and felt by all who are here.

We would not be honest if we did not speak of them.  And honesty is vital if this marriage, and all in this room, are to  thrive and prosper.  And so we will be honest here today.

One presence is a deceased mother, who left behind a husband—John—their 13-year old boy, and their 8-year old girl. Her children here today miss her; John senses her presence too; and Jane feels it as well.

Second is a divorced husband—the father, with Jane, to these two daughters in their twenties. The daughters see their mother with a new husband, and seek new definitions of “home” and “parent” and “marriage.”

The third is cancer.  It was cancer that claimed John’s former wife, the teens’ mother.  But Jane understands too—because Jane herself is a two-time cancer survivor.  The children know what cancer means; and John and Jane have their eyes wide open about it.
 
These three presences raise powerful issues for everyone in this room—which is why we speak of them.

As the minister spoke, I’m sure I saw the four children become more at ease.  I felt it, and think the other adults did as well.

Afterwards we ate fruit and cake.  Then we drove to Lake Michigan, changed into shorts and got wet and red from the end-of-summer sun.

We talked about truth-telling, of living in the moment.  But mostly we talked about being free of labels and roles, of learning to see and accept things just as they are.

It was a fine wedding.  An honest wedding.