Just Coasting Along

Sometimes, you don’t know where you are going until you get there.”

Anonymous

An afternoon at Neahkanie Beach

In August my wife and I drove to Manzanita on the Oregon coast. We were accompanied by her sister and brother-in-law. Our mutual objective was to escape the inland heat.

Each morning we walked Neahkanie Beach. A haiku of fog shrouded Cape Falcon. The mist obscured the ocean. Its mysteries swallowed all but the footprints of beachcombers.

Flocks of plovers scurried in unison across the sand. A solitary gull strutted with self-importance. I splashed through tidal puddles. Recently, I’d stopped all treatment for my cancer, Multiple Myeloma. Liberated from the tyranny of drugs, I felt the urge to run. The teeter-totter of steroids and the fatigue of chemo lay like driftwood in my wake.

Footbridge on the way to the beach at Oswald West State Park.

We relaxed in the respite from the heat wave. Temperatures in the 70s prevailed during our visit. Coastal attractions led to exploration. We wandered through a grove of mammoth spruce trees at Oswald West State Park. The track led us to a romantic cove busy with surfers.

We dined out each night. The Mighty Thai in downtown Manzanita offered the best fare. After three days, we returned to our respective homes in Beaverton and Hood River.

A week later, my wife and I rode Amtrak from Portland to Seattle. I’d made an appointment with the administrator of Car-T therapy at the Seattle Cancer Care Alliance. The consult would be the penultimate step of my medical odyssey since choosing to re-stage my disease last December. The rocking, the rolling, and the clatter of steel wheels on steel tracks soothed my anticipation of what awaited.

The Amtrak Cascades

We Ubered from the train station to our apartment at the SCCA House. After settling in, close friends picked us up for an evening of dinner and conversation. Later, we watched the sunset at a beach on the Puget Sound. If we do end up getting treatment in Seattle, these friends will be a loving source of support.

The SCCA is reminiscent of the Emerald City in the Land Of Oz. We had spent 3½ months there in 2008 when I underwent a Stem Cell Transplant. Much of what we experienced at that time bordered on science fiction.The objective of this visit was to inquire about the status of their Car-T treatment program.

The doctor gave us a full hour of his time. He assessed my disease, detailed their Car-T process, and added me to their waiting list. I am now wait listed with the SCCA and Oregon Health Sciences University.

Outlaw Poetry in a Seattle neighborhood close to the SCCA

Car-T is a relatively new and promising cancer modality. It’s aimed at heavily treated patients who have relapsed from the more conventional options. It re-engineers and grows a patient’s own T cells. After four to six weeks, this army of cancer killer cells is returned to the patient’s blood stream. Serious side effects can occur. So, close monitoring is required before the patient is released. 

There exists a nationwide backlog on Car-T procedures. Hence, the waiting lists. For example, OHSU performs only 8 or 9 procedures a year. Their waiting list is 30+ deep. The SCCA performs approximately 36 procedures per year from an even larger list. Patients are not selected on a first come, first served basis. Instead, a board chooses the patient based on need or other subjective factors. For some, this is a last ditch adventure. There is no definitive time line for when or if I might be selected.

Currently, I enjoy the drug holiday. I feel the best I’ve felt in 10 years. Nonetheless, myeloma is persistent. It will progress. It’s what it does. My future seems as obscure as the ocean at Neahkanie. We know it’s out there, but we can’t see it.

Now, a country song, Plastic Flower Shrine


13 thoughts on “Just Coasting Along

  1. John: one day decades ago now I and two friends played the 9-hole mom-and-pop course just up the mountain from Manzanita (since razed for a development project) and if you’re interested, I’ll send a poem I wrote celebrating the occasion. ~Tim

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    1. Tim, good to hear from you. Please send the poem. BTW, the course is still there. I did not play it but we drove by and a friend of mine played it recently. The course has a good reputation.

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  2. I’m thinking of you, John, and celebrating your drug holiday! I’m so happy you are feeling good and taking your lovely wife to cool places with a serene beach. May you continue to feel like running while you’re on the waitlist and keep writing your thought-provoking, soulful songs.

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  3. What a great description of the ocean. I live about 15 min. from Manzanita. I love the fog and cool weather, and, yes, the rain and more rain. I hope you make another hole-in-one soon!

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    1. Hey Johnie. What a great surprise. It brought tears of joy to my eyes. 😢 I recall you had moved to the coast but forgotten where. Manzanita is my favorite spot.

      No holes in one, but I shot my age again last week. 🏌🏼‍♂️ Hope you are well and making music. 🎼

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      1. That’s great!! I played my first 2 rounds of golf (9 holes) this year, amazingly enough, at Manzanita Links. The first time I’ve played since 2015! I played as part of the Meals for Seniors team as part of the Eugene Schmuck Foundation tournament. I am a volunteer and Board Member for Meals for Seniors in Rockaway Beach. Almost 3 grandkids now, too.

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  4. John, so glad you’re enjoying nature and your freedom from drugs! I’d love to visit the places you described. Beaches and footbridges through the woods have healing powers. I’m saying prayers (and crossing my fingers) that you get the Car-T Therapy. Keep making music and writing. (Gary and I are on schedule to be grandparents at the beginning of January).

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  5. Manzanita is a special place, my sister and brother-in-law often go there ~ one of their favorite places in Oregon, for a quick getaway with their dogs. Your writing fits with my experiences there and takes me back. Something about escaping to the Oregon Coast and with your history battling MM; I laughed with understanding with your line, “I felt the urge to run. The teeter-totter of steroids and the fatigue of chemo lay like driftwood in my wake.” A feeling of freedom and Manzanita brings out the best. Best of luck with the Car-T trials and your waiting list hopes… Great vibes with this post, and as always with your music, too ~ a beautiful melody with lyrics to match ~ a storyteller who can carry a tune is something special. Well done, John!

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