Wednesday, November 25, 2015

Inch Ninety-Three: Thankful

He had just backed his car out of the parking slot and put it into drive, when the engine died.

I was walking past headed to the medical building and looked over at the sound. I know the heartbreaking sound of a dying engine. Our glances met briefly, then he stared at his dashboard and cranked the engine.

It caught, reluctantly at first, then more solidly, and he eased it out of the parking lot and into his his day, whatever that day held for him. Was he thankful that the engine turned over one more time? Maybe. Probably.


My job as a mediator brings me into contact with people across the broad socio-economic spectrum, from those who have a lot to those who have almost nothing. The truancy season has started in earnest so now I am in the schools regularly mediating attendance issues with parents and students.

I recently mediated with a young single mother hanging on by her fingertips. She was one of those women who have to count and recount every last penny in the purse before making a purchase. Yet her face glowed when she talked about her children and their education, and about doing better for them. Despite the hard times she struggled with, this mother was thankful for her boys and the richness they added to her life.


It is that time of the year when the days grow shorter and the nights deeper. In another week and a half, I'll be lighting Hanukkah candles to push back the dark. My thoughts invariably turn to the year that is rapidly winding down. 2015 has been a hard year, dominated by my older brother's illness and death. Dale has been dead for just over a month now and we are still groping our way through the loss. My own medical journey has grown more difficult and demanding and is an overlay to all of my days. (I am writing this out longhand as I sit through yet another chemo session.)
In San Antonio with Katrina

Am I thankful?

Yes. Unequivocally. I've been to Portland to see my family twice this year. I went to San Antonio
earlier this month and got to spend a day with my dear friend Katrina. I am surrounded by love and support in my own community. I share each and every day with my beloved Warren. When I finish this chemo session, I will head home and repot some plants and think about the pies I will baking later tonight for tomorrow.

How could I not be thankful?

Tomorrow is Thanksgiving. May you all find moments of thankfulness.

Saturday, November 21, 2015

Inch Ninety-Two: Party On

Note: I write a monthly column for The Myeloma Beacon, an onsite resource for those of us (and our caregivers, family members, oncologists, and the public in general) with myeloma. Warren and I are just coming off several extremely hectic and packed weeks, including a concert last night. So for this square inch of writing, I am giving you my November column, lightly edited for this blog. (Another note: I have a wonderful, amazing editor at the Beacon, Maike Haehle. She makes me read great in print month after month!)


Earlier this month, I held my third cancer party.
I threw my first cancer party when I was diagnosed with multiple myeloma 11 years ago. It was a big party. A really big party. It went on for hours, everyone brought food and drinks, and people were packed against the walls of my apartment.
What a great night.
Almost three years ago, when I relapsed and started Velcade, I threw another cancer party. I had lost physical ground over the years, I wasn’t happy about the Velcade, and it was time to party again.
Once again, everyone showed up and everyone brought food and drinks. Although the party was held in mid-January, the weather was fairly mild that night. That was a good thing because there were so many guests packed into our house that the indoor temperature rose and people spilled out on the deck to get some relief.
That was a good night too.
After I relapsed again this summer and began Kyprolis this fall, I looked at Warren and said “you know what this means, don’t you?”
He nodded. “Another party?”
Yep, another party.
I called this party the “Further Down the Road Cancer Party.” At 11 years out, I have no illusions about where I am on the myeloma spectrum. And my invitation reflected that:
Many of you were there for the first party in December 2004, when I was initially diagnosed with multiple myeloma. And from time to time, we’ve partied to recognize what a long, strange trip this has been.
Eleven years later, it’s time to party again! Why? Because I’m further down the cancer road and what better excuse than to raise a toast to good friends and good community? (And for those of you won­der­ing how I can send this invite out when my older brother is in the end stages of cancer, trust me, Dale gets that life goes on and he will be there in person or spirit or both.)
This was a great party too. Once again, we packed the house. Once again, the food filled three tables, all the counters, and the stovetop as well. Once again, people spilled outside when the inside temperature rose.
The rooms were full of people I care about, many of whom have been with me from the start of this adventure. My friend Larry and his wife drove down from northeastern Ohio to join us. Larry also has myeloma (13 years) and has been my constant companion in the myeloma world. They arrived early, and we four had time to compare notes about treatments, where we are this many years out, and how our spouses are holding up (magnificently).
There were some quiet revelations. My friend Doug, who has dealt with stomach cancer for several years, took me aside and told me that the cancer was back, in multiple tumors, and the prognosis is not good. We hugged hard; I sought out his wife and hugged her hard too. Mark, my poetry club friend, just recently received a diagnosis of chronic lymphocytic leukemia, and we have been talking about the reality of that diagnosis. We talked at the party too. Other friends asked me quietly about my status and prognosis.
The most noticeable absence was my brother Dale, who died last month from liver cancer. Dale was always the last guest to leave, talking long into the night with anyone nearby. He knew no strangers. My kitchen garbage can has a permanent crimp in the lid from his sitting on it at the first party 11 years ago, and I kept looking over at it, expecting to see him there again.
The reality of a cancer party is cancer.
But that’s not the only reality. The reality is that life goes on, and this party demonstrated that in spades. There was a lot of laughter and talk. There were hugs and stories. There were tall tales and taller truths. There were a lot of us just celebrating being alive and being together for now.
I don’t throw these parties to celebrate the illness. I throw them to thumb my nose at it. Myeloma is killing me, but while I am able, it will kill me on my terms. Those terms include good friends and good food and good talk. Those terms include loud laughter and funny stories and quiet comments and long hugs.
And those terms include my cancer parties.

Tuesday, November 10, 2015

Inch Ninety-One: Our Last Doughboy

This is a post I first ran November 11, 2009.  November 11, which we now call Veterans Day, is the day World War I hostilities stopped. Last year marked the centennial of the start of that war; this is the 97th anniversary since that war ended.

The centennial of World War I brought renewed attention to that event, which many historians say was the most significant and devastating war in the history of man, especially with regard to its impact on Europe. Here, we long ago relegated it to a dusty shelf for the most part.

I continue to be fascinated with World War I, more so than its successor. Maybe that is in part due to the story below.


When I was growing up, there were two sepia photographs of soldiers in my grandmother's bookcase. One was a photograph of her husband, my grandfather. The other was a photograph of a wistful looking young man who was always referred to as "Uncle Art."

Uncle Art was my grandfather's younger brother. Both were in the army during World War I.

My grandfather was mustered out quickly as he was blind in one eye from a carpentry accident. Uncle Art, however, served from 1917 until 1918, when he was killed in France.

The family story was that Uncle Art "got his head blown off" in battle. He was buried in a small country cemetery a little ways outside of town here, next to his parents.

Growing up, that was about all I ever knew about Uncle Art. Neither of my grandparents ever mentioned him.

Even without his being mentioned, it always seemed to me that World War I had a profound impact on my grandmother. Although all four of her sons served in World War II, World War I seemed the more immediate and more personal war in the household. There were the photos of the young soldiers, of course. And in the living room was a framed copy of the quintessential poem of that war, McCrae's "In Flanders Field:"

In Flanders Fields the poppies blow
Between the crosses row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.
My grandmother would often recite that poem, especially on November 11th. It was one of the earliest poems I committed to memory as a result. To the end of her days, she always referred to November 11 as "Armistice Day," and made sure the flag flew from sunrise to sundown. Sometimes she would intone "on the eleventh hour of the eleventh day of the eleventh month" in referring to the significance of the day.

In recent years, I did a little bit of research and discovered a little bit more about Uncle Art. He entered the Army in 1917, a member of Company K, 166th Infantry, which was a part of the 42nd Division, known as the Rainbow Division. In all likelihood Uncle Art trained at Camp Mills, located on Long Island.

After training, Uncle Art shipped to France. I don't know whether he came back to Delaware before shipping out or went straight on by troopship to Europe. He made the rank of corporal.

The 42nd Division saw a great deal of action during World War I. Its first engagement was the Champagne-Marne offensive, which was the last great thrust of the German Army. The Germans were unsuccessful, in large part due to the influx of American troops to bolster the French army.

2058 soldiers of the 42nd Division died in that battle, which only lasted three days. Uncle Art fell on July 15, 1918, the first day of the engagement. There was a small death announcement in the local newspaper.

Uncle Art was buried in France initially. His body did not come home until three years later, when a number of bodies of American soldiers were exhumed and returned by ship to the United States for reburial.

Uncle Art came home on the SS Cantigny. The Cantigny, a troopship that wasn't built until after the end of World War I, primarily saw duty repatriating the doughboys after the war ended. After transporting the ones who survived, the Cantigny apparently repatriated those who did not. Its active military use ended in September, 1921, which was the same month that Uncle Art returned. He may have been on the last military voyage of that ship.

Uncle Art was buried in a small country cemetery about two miles outside of town. Looking at the little cemetery, I cannot fathom why his father picked a cemetery that at time would have been a fair drive from town. It was not a "new" cemetery even then, and to my knowledge my grandparents had no affiliation with the little church that operated it.

I went out there two days ago to visit the graves. There is Uncle Art alongside his mother and father. My grandfather, who was his brother, and my grandmother are close by. It is a quiet, mossy cemetery, ankle deep in leaves in the fall.

The War to End All Wars ended 91 year ago today on the "eleventh hour of the eleventh day of the eleventh month." Uncle Art came home three years later. Alice, my great-grandmother, died a year after that. I have wondered whether her son's homecoming was the strain that killed her or the relief that released her?

No one is left to answer that question. No one is left who knew my great-grandmother. No one is left who can tell what her reaction was when her doughboy came home from France at long last.

Thursday, November 5, 2015

Inch Ninety: The Other Shoe

Last week I wrote about the abundance of running shoes I brought home from Portland. I have been wearing a different pair each time I head out for a walk or an errand.

Earlier this week, I was outside wiping off my car windows (to be able to see to drive to work) when I saw a young woman walking up the street. When she smiled and said hello, I realized it was Sierra.

I have known Sierra since she was two or so. Her family lived across the alley from us when the boys were growing up and she and her older brother Cory were regulars in our house and backyard. Sierra recently moved back to Delaware with her fiancé and is again in the neighborhood.

Sierra came up our driveway and ogled my shoes—the fluorescent yellow-green pair. She had just priced a pair similar to them.

I told her my shoe story and her eyes widened. "Lucky!" she breathed. Then I told her my shoe size.

"That's my size!"

"Come in and try these on."


So as Warren waved goodbye and went off to work, Sierra sat in the living room, pulled off her old shoes (hand-me-downs from her mom), and pulled on the fluorescent ones. She wiggled her toes and smiled.

"Go outside and walk a bit," I said, the mom in me kicking in. I had to restrain myself from kneeling down and kneading to see where her toes were as I had done so many times with my boys when they were little.

Sierra obeyed. when she came back in, she was smiling. "They're perfect!"

"Take them. They're yours!"

"Really?" With a hug and a radiant smile, Sierra was out the door and soon striding away, her step quicker and lighter.

My son Sam was always like that when he was little and received a new pair of shoes. He was swiftness itself, knowing the new shoes had some magic in them. Sierra reminded me of that.

There is a Ray Bradbury story, "The Sound of Summer Running," in which a young boy negotiates the acquisition of a pair of tennis shoes from the local shoe store. The proprietor makes the deal because the boy convinces him of the speed of a new pair of shoes:

Mr. Sanderson leaned forward. “How do they feel?” 

The boy looked down at his feet deep in the rivers, in the fields of wheat, in the wind that already was rushing him out of the town. He looked up at the old man, his eyes burning, his mouth moving, but no sound came out.  

 “Antelopes?” said the old man, looking from the boy’s face to his shoes. “Gazelles?” 

 The boy thought about it, hesitated, and nodded a quick nod. Almost immediately he vanished.   

As I watched Sierra walk away, gazelles and antelopes bounded with her.

Wednesday, October 28, 2015

Inch Eighty-Nine: The Shoe Fits

When Anne Morrow Lindbergh's older sister Elisabeth died young, Anne wrote: A long long week, so strange and unreal and artificial now, and suddenly dropped into the past. A week of false hopes and false dreams: all kinds of plans and schemes that now seem irrelevant—because Elisabeth died. 

Last week was our long long week because Dale died.

And now we are moving on. Life goes on, a fact that my brother Dale understood as well as anyone. Even while he was busy dying, he was vitally interested in what we were all doing and remind us that those other things—the rest of life—were also important. Chemo sessions, laundry, the World Series--all the stuff of daily life keeps flowing no matter what the Big Event is.

I am writing this Tuesday night although I won't get it posted it until Wednesday evening. Earlier tonight I was reading Into the Silence: The Great War, Mallory, and the Conquest of Everest by Wade Davis. It is an excellent history and a good book for long chemo sessions. But I have set it aside to browse through The Tightwad Gazette III, the last of the Amy Dacyczyn collections.

Sometimes I just take comfort from reading about the frugal efforts of others, and tonight is one of those nights.

When I was in Oregon in September (was it only six weeks ago?), I came back with four pairs of new never-been-worn running shoes, all free. This was thanks to the kindness of a woman, now a friend, who I've known for almost 40 years--the last love (and one of the earliest loves) of my first husband, who died so suddenly a year and a half ago. Jennifer works for a small company that tests running shoes and she showered me with shoes. I at first felt silly with that many shoes, but I now smile realizing I will likely never have to buy sports shoes again. From a frugality standpoint, it's a win situation and my feet, racked by neuropathy as they are, appreciate the variety.

Monday I came home from work early, put on one of my pairs of shoes, and walked to a nearby park. The park runs along the Olentangy River, a childhood playground for me and my brothers. The sky was an impossible blue and the maples and other deciduous trees were aflame. I walked the mile loop slowly, reveling in the fall spectacle. I thought of my dead brother and the hours we spent at the river; I snapped a photo of the river and texted it to my youngest brother, to let him know where I was.

A walk is one of the best ways I know to pull together loose ends: mental, physical, emotional, chronological. This walk was no exception, which is good because I had a lot of loose ends. By the time I made it back home, I was drenched in autumn, and anchored once again by life moving on.

Thursday, October 22, 2015

Inch Eighty-Eight: Obituary

I wrote last week about my brother, who was rapidly coming to the end of his days. Dale died Tuesday night, after two long days of slipping in and out of consciousness. Services are this weekend.

Before dying, my brother penned his own obituary. It is currently playing on Facebook to rave reviews. This week he is my guest writer, a prospect that would have amused him to no end. I don't often say this, but I wish I had written this:

Marvin Dale Nelson, Jr. (September 19, 1953 – October 20, 2015) 

All of this is true, more or less. One of the things about liver cancer (apart from it cutting my life down to a fraction, which sucks) is it gives me a small window of time to write my own send off. I won't bore you with statistics but there are a few things you need to know or else funeral homes and newspapers think somebody dropped the ball and start finger pointing. I was born September 19, 1953 and given the handle Marvin Dale Nelson Jr. My dad, Marvin Dale Nelson, Sr., is the first edition. My mom, Shirley (Skatzes) issued four more kids, busy woman that she was. After me came Heather, who died in infancy, April (married to Warren Hyer, sons Ben and Sam Sanchez), Michel (married to Kate, children Mike Jr., Tim and Meg) and finally Mark (married to Jackie, children Matt and Lizzie). There are also two aunts surviving me, Virginia (Ginger) Skatzes and Gail Nelson Rubinowski, as well as numerous cousins of every degree. But this really isn't about them.

I appreciated my parents’ love for me and I loved them in return. In my younger and more vulnerable years, my dad gave me some advice that I've been turning over in my mind ever since. Along the way, I learned to swim. I graduated from Delaware Hayes High School in 1971, setting records on the swim team, got a scholarship and spent a year at Kalamazoo College in higher education. That wasn't for me.

I got married as people tend to do. Of that era, the less said the better. I have no children of my own, but I would have liked that.

Calendar pages turned and months turned to years. I found a calling as a mechanic and I got to see how things work and how I could make them work. It was satisfying to some degree and filled a large chunk of my life. I worked with many people in many places. A lot of them I liked, others not so much. No regrets here, but to do it over I would get that college degree just for the options.
Throughout my life I made friendships to last forever. One in particular was Sally Blum. She always had my back and I had hers. What more does one need? Friends are the family we choose for ourselves.

Ships at a distance have every man's wish on board and I am no different. I loved to travel, a gift from my dad. Now that you are reading this, I am evidently free to hitchhike the galaxy as soon as the paperwork is completed. So until you see me swinging on a star, remember, a story has no beginning or end—one arbitrarily chooses that moment of experience from which to look back or from which to look ahead. Now my story begins again.

There will be a Celebration of Life on Sunday, October 25, 2015, at St. Mark’s Lutheran Church, 28 East William Street, Delaware, Ohio. Friends will be received at 1:30 p.m., service will start at 2:30 p.m., and a reception will immediately follow at the church. All arrangements are by Snyder-Rodman Funeral Center; burial will be private. Flowers may be sent; donations in lieu of flowers may be made to the American Cancer Society or Hospice of Central Ohio.

Thursday, October 15, 2015

Inch Eighty-Seven: End Days

My older brother is dying. He was diagnosed with metastasized lung cancer earlier this summer and began treatment immediately. The oncologist was able to rein that cancer in. What no one anticipated was the liver cancer, which turned out to be unrelated to the metastasized lung cancer, suddenly going rogue and exploding in size and impact in the last three weeks. Treatment has stopped; hospice is in the home.

My older brother is dying with grace and humor and sadness and tears and laughter. The cancer is consuming him so quickly that his face is not the same face it was just four days ago. His energy levels are dropping by the minute.

My older brother is dying. I have always had an older brother and there will be a gap now. I think of Anne Morrow Lindbergh's writing when her older sister Elisabeth died, and the grace and sorrow with which Anne wrote about the loss of her sister and the hole in her world. 

I am at work as I type this. A half hour ago, I had to walk a block downtown to do some banking for my Aunt Ginger. When I stepped outside, I was hit with the intensity of the October day. The maple tree at the law office across the street is aflame; the sky is brilliant blue. All I could think of as I stared up at the sky and smelled the sweet smell of autumn was that I was fiercely glad my brother is dying in the midst of all this beauty and splendor. What a season to exit the world in.

Edna St. Vincent Millay's sonnet, "God's World," came to mind:

O world, I cannot hold thee close enough!
   Thy winds, thy wide grey skies!
   Thy mists, that roll and rise!
Thy woods, this autumn day, that ache and sag
And all but cry with colour!   That gaunt crag
To crush!   To lift the lean of that black bluff!
World, World, I cannot get thee close enough!

Long have I known a glory in it all,
         But never knew I this;   
         Here such a passion is
As stretcheth me apart,—Lord, I do fear
Thou’st made the world too beautiful this year;
My soul is all but out of me,—let fall
No burning leaf; prithee, let no bird call.

May my brother's way out of this world be marked with the brilliant burning leaves of this season.