Thursday, December 31, 2015

Inch Ninety-Eight: 2015 By The Numbers

As we all prepare to wrap up the year, I have whiled away the hours thinking of things I could count for 2015. It turned out to be a fun exercise.

This is what 2015 looked like for me:

Number of blood draws/IV sticks (successful or not): 30 (probably low)

Number of times my new port has already been used to great personal acclaim: 4

Number of trips to Portland, Oregon: 2

Number of trips to Rochester, Minnesota: 2

Number of times I walked through the grounds of the Alamo: 3

Number of states I was in or drove through, not counting Ohio and not counting flyovers: 12 (I had originally posted 11, but Warren reminded me of Iowa)

Number of days old Ben was as of December 16, when he turned 30: 10,958

Number of  days old Sam was of as June 28 when he turned 25: 9132 

Number of days old Ramona will be as of today, December 31: 1217

Number of presidential debates watched this year, either party: 0

Number of bowls of oatmeal eaten for breakfast: 260 (more or less)

Number of batches of biscotti baked for the holidays: 10

Number of pieces of biscotti 10 batches make: Over 800

Number of batches of peanut brittle Warren made for the holidays with his son's help: 3 (plus 1 burned batch)

Number of Preservation Parks out of 9 we have walked in: 3

Number of concerts Warren played in this year (not counting rehearsals): 16

Number of concerts Warren played in that I attended: 13

Number of church services Warren played: 5

Number of church services Warren played that I attended:  4

Number of books I read: Ha! You think I keep track of that?

Number of Legal Clinics held: 12

Number of Legal Clinics at which I volunteered: 11

Number of clients served for the year: 228 (not counting the phone consultations) 

Number of poems written into final draft: 59

Number of poems written still in rough draft: 8

Number of 1000 piece jigsaw puzzles completed: 2

Number of hugs given and received: too many to count

Thursday, December 24, 2015

Inch Ninety-Seven: O Tannenbaum

Thank heavens for good friends. It was my good friend Margo, commenting on live Christmas trees, who said that she and her husband had learned over the years that rather than agonize over which tree looked the prettiest or had the best shape, just pick one and take it home. Once decorated, the tree would look just fine.

I took her comments to heart this year. By last Sunday night, I was able to report to Margo that our tree was up. We had picked it out in record time ("How does this one look?" "Looks good.") and moved it into the house Sunday morning. By nightfall, Christmas had arrived. 

The deed was accomplished by two exhausted, weary, one of them sore and limited in activity (I had a port put in last Friday), aging (sometimes rapidly) adults who realized after a long weekend of concerts and rehearsals (mostly Warren, of course, but I accompanied him to a Sunday performance in Mansfield, Ohio, an hour away) that if we didn't do anything Sunday night we would not get the tree decorated at all. AT ALL.

The tree is shedding needles voraciously. If you walk by it, it sheds. If you twitch while sitting in the same room, it sheds. That's okay. While it shed, I spent an hour opening ornament containers (i.e. large plastic tubs full of stuff) and pulling out a handful of things—let's do this one, not this one this year. There were lots of ornaments in the second group. We hung them up (Warren taking the bulk of the hanging duties, as I was culling ornaments) until Warren suddenly said "I am exhausted and can't hang any more ornaments." At that point, we had just three stray ones left on the couch, and I put those on. Lids went back on the containers and 
we were done.

And you know what? The tree looks just fine. Especially with the tree lights lit and the room lights dim in the evening. (Did I mention that one string of lights bit the dust when only half the string lit? And that we made do with the remaining strings we had?) So thank you, Margo, for the "just pick a tree and it will be fine" advice. Because in the end, it is just fine.

And the front door wreath this year? 
The raffia wreath on our front do

We bought some roping when we were out buying our shedding Christmas tree. We have a wreath frame made of a coat hanger and Warren lashed some of greenery to it. (The rest of the greenery was tied to a former timpani head that broke last year and is now repurposed into a most excellent outdoor wall wreath.) A good friend sent us a gift basket that was tied with raffia. We eased the tie off and it was headed to the trash when I realized that with one snip it would make a folksy bow with streamers. Warren made it the next day or so and it too looks just fine.

So here we are, the day before Christmas, decorated with bits and pieces of our daily life.

And you know what? It looks fine. Just fine. 

The wreath made from a former timpani head

Saturday, December 19, 2015

Inch Ninety-Six: Change of Routine

High up on the facade of the town's old high school, now in its last days as a middle school, is the inscription "New Occasions Teach New Duties."

I am in the middle of a new occasion.

After eleven years of having almost all of my oncology appointments, labs, and treatment handled locally, I now drive 45 minutes to reach my oncologist and his office. My oncologist is no longer affiliated with our local hospital (owned by a behemoth centralized non-profit corporation). Many of his patients, when the break came abruptly, followed him to his home office.

That's the new occasion.

I am still learning the new duties. The new location is a stand-alone oncology facility, about the size of a small, regional hospital. In atmosphere, it is more like the Mayo Clinic than any other medical facility I have been in over the last eleven years: soft colors, no blaring televisions, soft words from staff. They know who I am and what my treatment is without missing a beat.

But I am the new kid on the block. I don't know my way around the building yet. I don't know any of the staff by face yet (let alone by name), I don't know much of anything.

I don't know the faces of the other patients. At the old place, I generally knew half the waiting room as friends (and family) from the community, not just as cancer patients. Here they are just all cancer patients, at least for now.

As I write this, sitting at the Zang (the nickname for the new facility), it is ten days until Christmas. The Zang is decorated for the holidays with wreaths, poinsettias, and red and green ribbons everywhere. The lobbies and the central desks are festive indeed. There is a quiet fountain (the overflow type. not the spouting type) behind me, with water running down onto the rocks surrounding the copper fountain bowl. As part of the holiday decor, three oversized red globes float on the water.

My oncologist, whom I know well after more than eleven years. is clearly more relaxed and at home here. This is, along with his partners, his building, his practice, his baby. Pride of ownership shows.

With time, I will fit in and be my usual self. For now, though, I am smack in the middle of a new occasion. For now, I am concentrating on how to find this place, and where to go once I find it, and waiting for the new feeling to go away. And for now, I am learning my new duties.

Saturday, December 12, 2015

Inch Ninety-Five: The Tiniest Bits of Light

My blood pressure is up. Not alarmingly so but enough that my family physician yesterday took a second reading, convinced the first was false. Her eyebrows raised when the second reading matched the first.

I cannot say I was surprised. Dismayed, yes. Surprised, no.

I have been walking around for days now with a tight chest, a fist clenched in there that I cannot seem to open. There is so much turmoil and trouble these days: internationally, nationally, locally, personally, internally. I can't seem to set it aside or gain any perspective or see my way through it. Each night I drop into bed, grateful for the dark, grateful to turn over and hold Warren, my safe harbor. But the clenched fist is there when I awake, and I carry it through the day with me.

It is clenching right now, as I write these words.

It is Hanukkah; tonight is night seven and my menorahs will be ablaze. The outside world has butted into Hanukkah as well. You are supposed to light the candles at sunset, but some nights I have not, can not, light them until much later. Last night with our schedules and the Symphony and other obligations, it was 10:00 p.m. until I lit the candles and we stayed up until 11:00 as they burned down.

The candles make such a brave light at the dark time of the year. Rabbi Lawrence Kushner reminds us that these tiniest bits of light help us remember the divine presence.

I am trying to remember that, but I am not overcoming the clenched fist.  

I am waiting for a miracle.

The late writer Chaim Potok wrote a short story about Hanukkah,  "Miracles for a Broken Planet." It is a childhood memory of observing Hanukkah in New York in 1938, a month after Kristallnacht. Potok does not understand why God allowed Kristallnacht to happen. He goes through Hanukkah dreaming of shattered glass and burning synagogues and wondering where God was. 

It is Potok's father who finally addresses the situation:
On the eighth and final night of the festival I stood with my parents in front of the burning candles. The darkness mocked their light. I could see my parents glancing at me. My mother sighed. Then my father murmured my name.
"You want another miracle?" he asked wearily.
I did not respond.
"Yes," he said. "You want another miracle." He was silent a moment. Then he said, in a gentle, urging voice, "I also want another miracle. But if it does not come, we will make a human miracle. We will give the world the special gifts of our Jewishness. We will not let the world burn out our souls." 
The candles glowed feebly against the dark window.
"Sometimes I think man is a greater miracle-maker than God," my father said tiredly, looking at the candles. "God does not have to live day after day on this broken planet. Perhaps you will learn to make your own miracles. I will try to teach you how to make human miracles."
Potok reflect on his father's words and does not believe his father can ever teach him how to make miracles. It is only in looking back that he realizes his father "taught him well."

Our planet is broken. Violence, terrorism, racism, bigotry, intolerance, refugees, poverty, hunger, homelessness: all the ugliest words in the dictionary are strutting their stuff right now. Add to that my personal bundle of health worries and grief and stress and it seems overwhelming. 

No wonder my chest is tight. No wonder my blood pressure is up.

But the candles are burning, bringing their tiniest bits of light, reminding me of the divine presence. 

And I believe in making miracles. Small miracles. One at a time. 

Friday, December 4, 2015

Inch Ninety-Four: Standing Down

I am finally standing down.

For the uninitiated, "standing down" is a military term meaning "a relaxation of status of a military unit or force from an alert or operational posture." 

I recently realized that I have been, mostly unconsciously, on alert, trying to create around Ramona the wall of books with which I sheltered Ben as a young child. And here's the thing that finally hit me: I don't have to be on alert. 

I can stand down.

I can stand down because, quite simply and beautifully, Ramona doesn't need protected like that.

Ramona is part of a secure, loving family made up of her parents, Papa and Nana, Uncle Sam, Auntie Jenna and Uncle Cholo, and other family and friends. Unlike her father and to a lesser extent her Uncle Sam before her, Ramona does not need protected from a vengeful parent, a depressed parent, an alcoholic parent, an angry parent. Ramona can be her own bold, funny, confident, secured, loved and loving self day in and out. 

This realization on my part started to come to a head when I recently attended a conference session on the impact of chronic intense stress on the developing brain. Listening to the neurobiologist describe the chemical and physical consequences of chronic stress of a child's brain triggered a PTSD (post-traumatic stress disorder) reaction in me. With deep breaths and some mindful thinking, i managed to make it through the session, but it shook me up. The speaker's descriptions brought up painful memories of my sons' childhoods and my inability to fully protect them from the emotional chaos and conflict that marked our family. Each child reacted differently to that conflict and both of my sons still carry scars and quirky coping mechanisms today as a result.

My intense response to the speaker surprised me, catching me unawares as it did. But people with PTSD can have episodes triggered by innocuous circumstances, and I chalked it up to that.

Then came the books.

Books are important to me. They are important to Ben and Alise. They are important to Ramona. who is starting to puzzle out the sounds of the letters in her books. She lives surrounded by books: a house filled with books, her own bookcases at both her parents' house and Nana and Papa's house, and even her own library card. Ramona is not book deprived, to put it mildly. She already owns a number of titles that duplicate books I have here in Ohio.

So why did I have a small but plainly PTSD reaction when I made plans to ship some of the dozens of children's books to Eric and Brandee, Ben's cousin and wife, for their daughters Frida and Frankie?  It wasn't that I didn't want to share the books with Eric and company. I knew his girls would enjoy the books. These were books I read to Ben throughout his childhood, wrapping him in the comfort and security of the stories. (To a lesser extent, I read some of these books to Sam, who when young was not interested in being read to most of the time, being more interested in being on the go and chasing after his big brother and his friends. Different child, different needs.) I knew Frankie and Frida would enjoy them. 

What was going on?

I texted Ben my intentions, and he texted back immediately that he had no problem with my plans. I still put off filling a box for another week. Then I sat down by the bookcase and began to sort through the dozens of books, culling a bright assortment for the girls.

My discomfort finally revealed itself as I chose titles and started to flip through pages. I was afraid that I would leave Ramona unprotected if I didn't hold onto the books. I was afraid she would have no shelter. I was afraid she would not have the security of my library to hide within. 

I was afraid of things which have no basis in reality. Ramona's childhood is not her father's childhood. Ramona has Alise and Ben and unconditional love and that has made all the difference. 

When I realized that, I took a deep breath, books scattered around me. These books were going out to Oregon as gifts from one generation to another, not from mother to son to his child but sideways from one-time aunt to former nephew to his children. It was a perfectly good gift, full of adventure and love.

With that understanding, the weight lifted off my chest and my breathing calmed down. I chose the books with zeal and wrapped the box tight after slipping in some titles for the grownups as well. The books went west and I am waiting for confirmation of their delivery. 

And the joy of books. Yes, I am waiting for the joy of books. Because I am finally able to stand down and see them as that: bundles of joy. 

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 and my great-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.

Saturday, October 10, 2015

Inch Eighty-Six: Portland Moments

Rosh Hashanah gathering 
A month ago I was in Portland for eight days. Five weeks later, the immediacy of the trip has faded. Rather, I find myself reflecting on what I carried back with me.

Oh, that's obvious. Love, family, togetherness. Warmth, laughter, some tears. Good times, good food. A Rosh Hashanah meal full of family and friends, including a nephew (from my prior marriage) whom I had not seen in 14 years.

But there are two specific memories that I carry deep in my heart, with all the other memories as an overlay.

The first is Ramona, who is now three. Her verbal skills have exploded. She is pre-reading and I found myself more than once listening to her sound out her world. "Uncle Pat has a dog, Grandma. Duhh-duhh-duhh. Dog. 'Dog' starts with a D, Grandma!"

At three, Ramona is no longer the frenetic ball of energy she was at two. Her focus is sharper. She will sit through several books, then "read" them aloud  herself. She is capable of creating and following a sustained story/play line using plastic animals (giraffes, elephants, lions, horses, whatever—it's a peaceable kingdom).

Pie making
Ramona and I baked a pie together, an activity I put at the top of my "want to do" list. At three, Ramona is not quite ready to make a pie from start to finish, but she was excited to roll out the dough. Well, she was excited until she realized she could run her finger through the flour/sugar mixture I dusted the rolling mat with and stick her finger in her mouth.

"I LIKE making pies, Grandma!"

The other deep memory I will carry forever is I sat my sons down and spoke with them about my health. I'm way, way farther along the continuum of myeloma, so much so that I have passed all statistical expectancies. My Mayo oncologist said that I am in a very tiny class at this point, definitely in the shallow end of the pool. While I am hoping not to die in the next several months, I explained that death is a lot closer than it was.  And then my voice broke.

"I am learning to say goodbye to the things and people I love, and other than Warren, there is no one I love more than you."

I managed to get that out before I burst into tears.

Sam, sitting nearest to me at the table, looked at me, his eyes wide and stricken. He reached over and covered my hand, holding it.

Ben, at the far end of the table, shoved away. I thought I had upset him so much that he was leaving the room. Instead, he came around to where I was sitting and put his arms around me. We all spent a few minutes sniffling (well, I was crying) and then regained our composures. We then started playing a card game.

There are far worse ways to deal with life and death than to talk, cry, and then play a game.

Life goes on. It goes on in a card game. It goes on in a hug. It goes on in Ramona saying loudly at the supper table, "Pie! P! I! E! That spells PIE!"

And it does.

Saturday, October 3, 2015

Inch Eighty-Five: This Week

I wrote the below post the day after the Sandy Hook shootings in Connecticut back in December, 2012. Since then, there have been multiple mass shootings across this country, the most recent one in Roseburg, Oregon. With every shooting, there is a hoarse cry of "Why?" immediately countered with a pushback from the NRA and gun advocates as to how this was somehow the fault of gun-free zones (so the victims and the state are responsible for this) or, in the words of presidential candidate Jeb Bush, "stuff happens."

I grew up around guns. My dad hunted; my brothers hunted with him. I never got taken out hunting, but I learned to shoot. I do not own a gun, but I am not opposed to others owning them. I do not see gun owners as either evil or idiots. But I fervently believe that screaming that any type of gun control violates the Second Amendment and the only safe nation is an armed nation is idiotic and leads to senseless deaths. I do not believe that limiting access to guns is a step towards fascism or anarchy. I also do not believe the answer is to say "well, that shooter was mentally ill" and pretend there is no further issue to discuss. 

The further issue is this: we should not have to take our lives into our own hands when we go to school, or go to worship, or go about our everyday lives. I should not be forced to carry a weapon to defend myself as I go about my daily routine. And I should not have the NRA dictating to our political leaders a "hands off" gun policy in this nation and accusing me of being anti-American and unpatriotic because I disagree. 

I believe that as this nation becomes more polarized along religious, racial, and political lines, the potential for acts of mass violence grows. In a polarized world where we have eliminated civil discourse, it is just as easy to shoot to silence the opposing view as it is to argue. After all, "stuff happens." 

I have started identifying publicly as Jewish and liberal, because, as I tell sympathetic friends, when the extremists start lining people up, I want there to be no question where I stand. 

Here is my blog from December 2012. This is for the victims of the Umpqua Community College shooting:

It is the morning after and I am baking.

28 families in Newtown, Connecticut are making funeral arrangements, 20 of them for small children who did not live to see Christmas this year.

And I am baking.

My mind keeps churning over the news. My thoughts reel back to Columbine and watching the news that night with my hand to my throat and the tears rolling down my face. This morning as I read the online newspaper, my hand went immediately to my throat and the tears started again.

And I am baking.

My wonderful, beautiful daughter-in-law Alise mirrored my thoughts on her Facebook post last night and I would repost her words here if I could. But Facebook is balking so I am able only to summarize them. (I will post Alise's moving words in a separate post in the next day or two when Facebook decides to cooperate.) Alise cried out to us to focus on the children who were killed, not on the killer and what made him tick. Forget him. What Alise wanted to know is what the children's favorite colors were, could they tie their shoes, what games they liked to play. Alise wanted us all to remember these were children, with the little things that make up a child's life: a favorite book, a stuffed animal, a song sung in class.

And I am baking, filling the house with the scent of biscotti, wondering what cookies those children liked and whether they had yet done any holiday baking with their mothers, their fathers, their grandparents.

I think of Ramona as I roll the dough with my hands. When Ben was a little boy, there was the Cleveland School shooting in Stockton, California, where we lived at the time. We were horrified. And then came Padukah. And Columbine. Yet despite that violence—violence at a school—I still sent Ben and Sam off each day with my biggest worry being a traffic accident.

Those were just random acts of violence, I thought at the time. But increasingly, they are not. And as I look at Ramona in all her three-month old glory, I fear her parents live in a world—in this country, for God's sake—where they will send her to school someday and pray she not be gunned down in her classroom while she recites her ABCs.

And I am baking.

In Making Piece, Beth Howard wrote: "In those late autumn days, as winter approached, all I did was bake. With each push of the rolling soul was soothed and my heart mended a little more."

It is the day after Newtown and I am baking.

Thursday, October 1, 2015

Inch Eighty-Four: Overdoing It

When Benjamin was a toddler, we went through long stretches of time where, simply put, his father and I overdid it with him.

I'm not talking about material possessions, although Benjamin did not lack for books and toys. Nor am I talking about signing him up for too many activities.

What I mean is that far too often, we expected a very young Ben to confirm his needs and wants and schedule to our adult ones. Drive an hour and a half to visit friends? No problem! Put off lunch or supper for an hour or more because it was more convenient for us? Piece of cake!

In looking back, the results of these and similar choices were predictable. Ben, who by nature was a very easy going, low maintenance, gentle child, would become stressed and unhappy. Tears, complaints, wild sobbing, and ultimately a complete and total meltdown would invariably happen. And each time, after frantically patching up the situation, my then spouse and I would say "we overdid it with Ben. We pushed him too far. Let's not do that again."

You'd think I'd have learned my lesson almost three decades later.

I have recently started traditional chemotherapy, "traditional" in that I go to the infusion center and sit for two plus hours having toxic chemicals pumped into me. Two days a week, three weeks in a row. Rinse and repeat.

I am tolerating chemo fairly well, all things being equal. It could be a lot worse.

But I am overdoing it.

Living with a cancer that is making slow, inexorable progress, I keep dialing back what I do and how much I do. The chemo is a game changer for how I feel and how much I have left to spread around, no question about it.

But I haven't yet gotten the hang of dialing back, even on chemo days.

On chemo days, I have to factor in extra downtime. But I don't. On chemo days, I have to factor in feeling really mediocre. But I don't. And overall I have to readjust my expectations and schedule for the rest of the week. And guess what? I don't, at least not consistently and not very well.

This explains why the other night I was eating a quick supper at a Culver's after 8:00 p.m. an hour from home, and why, by the time we got home, I'd been gone for five hours straight (on a chemo day, no less).

Don't get me wrong. It was a good way to spend those five hours, going with Warren to a drumming session and participating in the same. But by the time I crawled into bed with chills and aching joints, all I could think of was Ben and overdoing it over and over and over again with him. Had I been that long ago toddler, I'd have been sobbing myself to sleep, wondering why no one was taking care of me. I'd be wondering what I had to do to right the day gone so wretchedly wrong.

But I am not that toddler. At fifty-nine and a half, there is no one—no inadequate caregiver, no lax parent—to blame other than myself. No one. So if I fall into bed hours too late, or fail to cut back on my schedule, or neglect the little blinking "OVERDONE IT" signs lighting up my day, well, it is a lesson I sorely need to learn anew.

Let's hope the lesson sticks one of these times.

Sunday, September 27, 2015

Inch Eighty-Three: Road Trips

I have been road tripping all over the continent this month: out to Portland, Oregon; Portland, Oregon to Rochester, Minnesota; Rochester, Minnesota to Madison, Wisconsin; Madison, Wisconsin to home for five days, then a quick dash to Nashville and back this weekend, leaving home yesterday morning and getting back just a little over an hour ago.

I am map addled.

I hope to write about the Portland trip, the Mayo excursion, and the Nashville jaunt. But not right now.

For now, it is enough to be home, the shoes off, the bag unpacked, the trips done.

Tuesday, September 15, 2015

Inch Eighty-Two: The Death & Dying Poetry Club

I am still away. On my return trip, I will stop at the Mayo Clinic, where I first went in June.

In addition to this blog, I also write a monthly column in The Myeloma Beacon, an online site for those of us who live with myeloma.

My August column was about my new poetry group, the Death and Dying Poetry Club. By Beacon standards, especially for my columns, it was a flop, garnering very little comment. My amazing editor, Maike Haile, and I agreed that even my regular readers were put off by the title.

But at a personal level, given my extreme poetry phobia, the column was a huge hit. The column allowed me to acknowledge publicly that I have a whole new outlet of expression. Thanks to Mark, my comrade-in-arms on the cancer front, I picked up my poetry pen again and have not put it down.

What I wrote is set out below. What I have to add is that my poetry output has grown from the two below to a manuscript of twenty.

And counting.


I love poetry. I have always loved poetry. Poetry is so many things. It's jazz, it’s a song, it’s a symphony, it's a chant, it’s a nursery rhyme.
And I used to write poetry. But for reasons too personal to share, I have not writ­ten much poetry, except for an occasional parody, for over 20 years.
It was my good friend Mark who showed me the way back to poetry. “Showed me the way” is a bit generous. It was more akin to long-ago days when you clustered around the pool and some wiseacre shoved you into the cold water when you were least expecting it, then cannonballed in right beside you as you came up gasping for breath.
Mark was diagnosed with myxoid sarcoma, a rare soft-tissue tumor, in March 2014, and the remedy was to cut about one-third of his left quad out. (There was more to the treat­ment than that, but that is what sticks in my head, because Mark is a serious cyclist.) We were already friends, but his sudden move to Cancerland deepened our friendship. Once he was able, we started walk­ing, talking about cancer, uncertain futures, life choices, and dying. As you can imagine, there was a lot to talk about.
His psycho-oncologist suggested to Mark that he keep a journal of his feelings, frustrations, and fears. You know the drill. Mark rolled his eyes when he told me this on one of our walks.
“I’m not journaling, April.” He didn’t add “no way, no how,” but you could hear it in his voice as we walked.
So Mark refused to journal. But, somewhere along the line, he started writing poetry in lieu of journaling. After a while, he shared some of it with me.
Dang. It was good. It was powerful. And after he sent me this one, I invited Mark and his wife Melinda to join me and my husband Warren for dinner:
Waiting for the other shoe to drop

I hear God upstairs
… undressing
You’d think he’d be quieter.
He makes sounds like a drunken sailor,
knocking items off shelves
and stumbling around
… now he’s singing to himself.
I hear the toilet flush
now he’s laughing to himself.
Does he know I’m down here?
Does he care?
After dinner, our spouses did the dishes (they volunteered – honestly, they did!) while Mark and I talked about cancer, talked about prognoses, talked about living with uncertainty, talked about death, talked about poetry. Then we all had dessert and brought the evening to an end.
The next morning I was unsettled. I thought about our conversation. I thought about poetry. I thought about the laughter from the kitchen while we talked of darker matters in the living room. Then I wrote:
The Reconvening of the Death and Dying Talks

In the kitchen
There were bright lights
The sounds of dishes
And laughter.
In the living room
We sat
And opened our hearts and hands
To death and dying.
In the kitchen
Warren and Mel talked and talked and talked
About Chicago
About percussion
About life.
The goodness of their talk filled the room and radiated outwards.
In the living room
You and I talked of dark paths.
You pointed to my copy of The Divine Comedy
And said you had it on your nightstand to read.
You might take it to Italy.
When I told you that after Mayo
Warren and I drove
In absolute silence until I started crying,
You looked at me, stricken, like a dog scolded for a bowl it did not tip.
You are on that lost path in the forest dark,
Seeing a glimpse of sunshine ahead.
I am on an empty plain,
Big Sky above me,
Listening to messages in the wind.
Then Mel and Warren spilled into the living room
With all that brightness,
With all that goodness,
With chocolate cookies and the Columbian Exposition.
Thus ended the reconvening of the Death and Dying Talks.
I was in the pool. And when I yelled from the shock of the cold water hitting me, Mark yelped and laughed and jumped in too:
Poems with no readers
I think
Might be the closest
To the truth
We have.
I am (famously, some would say) a doodler, not an artist. Painting, sketching, sculpting are all beyond me. I live with a musician, but I can barely labor my way through a simple scale on the flute I last played 40 years ago. I don’t sing; I can’t dance. I can’t sew or weave or express myself in any number of artistic outlets. I write, but I have limited my writing about myeloma to this column, some of my blog posts, and my treatment notes. I was actively journaling when I was diagnosed, but there are few reflections there on being ill. I had closed off any artistic outlet for self-expression about what I think about the cancer, my perspective on what is hap­pen­ing, or what waits up ahead.
What I have come to realize, as the words scroll from my pen (I usually draft longhand), is that I have kept more inside me than I ever admitted:
Lines for Mark from T. S. Eliot As Interpreted by April

Let us go then, you and I,
When the evening is spread out against the sky
Like a patient etherized upon the table,
And I will speak of amyloids in my liver
Which I will carry to Portland
And you speak of high white blood cell counts
Which you will carry to Belgium and Italy.
Measuring out my life in coffee spoons?
Standing in the room while women come and go
Speaking of Michelangelo?
Or cycling?
Or The Divine Comedy?
I will eat a peach without any dare.
I will disturb the universe.
I will stand on that crashing shoreline and call to the mermaids,
Demanding they sing to me.
I got shoved into the pool. The water really was fine once my heart stopped pounding from the cold and I shook the water from my eyes. I have not stopped writing poetry since that morning after our dinner. My electronic folder is growing. Mark and I trade poems back and forth.
And that is how we came to create the Death and Dying Poetry Club.

Monday, September 7, 2015

Inch Eighty-One: The 500th Post

This is my 500th post since starting this blog in 2009. At the rate I am now writing (approximately one post a week), it would take me almost ten years to double that number.

I'll be blunt. The likelihood of me having ten years left are slim to none given the cancer. Mostly none. So unless I speed up my rate of writing (also an unlikely prospect), chances are I will never hit that elusive 1000 mark.

But 500 is nothing to sneeze at. It's a nice solid number, a nice benchmark.

Faced with the prospect of the 500th post, I am not sure I have much to say. I am writing this out, as I usually do, by longhand. It is Friday night of Labor Day weekend. Thanks to the miracle of scheduling publication, I will upload and set this post to run sometime next week (probably Monday), as well as set my 501st post to run the following week.

I don't usually frontload posts to run, especially two weeks out, but I have good reason to rely on that crutch right now. Come Tuesday in the wee hours of the morning, Warren will drop me off at the airport so I can catch a plane to Portland. I am heading out to see Alise, Ben, Sam, old friends, and other dear family members, but most especially I am headed out to see this young lady:

Ramona just turned three on September 1. She loves books and imaginative play and "The Wizard of Oz"(the real deal), going so far to ask me if I liked "the windy part" (the tornado). I cannot wait to join the enchanted circle of her life. Faced with so much richness, I do not want to be tethered to a computer while I am away.

Rosh Hashanah begins while I will be out there, and I plan to usher in the New Year with a meal for the people I love. I will be baking pies, and I will help Ramona bake her very first pies in small tins.

After all, she is three now. It is high time.

I can't wait.

Tuesday, September 1, 2015

Inch Eighty: Oliver Sacks

Oliver Sacks, 1933-2015

Dr. Oliver Sacks, the renowned neurologist and author, died last Sunday. He had announced his terminal cancer diagnosis several months earlier in an evocative essay published in The New York Times.

Over the last 30 years, I have read some of his books, including The Man Who Mistook His Wife For A Hat and Musicophilia, and many of his essays. Besides being a doctor, Sacks was a fluid writer. On the act of writing, he wrote: "The act of writing, when it goes well, gives me a pleasure, a joy, unlike any other. It takes me to another place — regardless of my subject — where I am totally absorbed and oblivious to distracting thoughts, worries, preoccupations, or indeed the passage of time."

Sacks was raised an Orthodox Jew. As a gay man in a religion, culture, and age that did not see homosexuality as anything but an abomination, he withdrew from his religion. In his last essay, published The New York Times just two weeks before his death, Sacks spoke of his severance and the unanswered "what ifs?" had there been a different reception back in his youth, an acceptance he now found in his late years.

In that same essay, he reflected on the Sabbath as a day of rest and as an apt guide for the closing of his life. Sacks wrote:

And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual, but on what is meant by living a good and worthwhile life — achieving a sense of peace within oneself. I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.

When I saw the headline on Sunday that Sacks had died, my first response was to burst into tears. When I calmed down, I reflected on a life well lived, right to the very end in his showing us how to die.

I am grateful he found his Sabbath.

Friday, August 28, 2015

Inch Seventy-Nine: Learning to Conserve


My battered red Webster's New Collegiate Dictionary tell me the word means to "keep in a safe and sound state, [especially] to avoid wasteful or destructive use."

I am learning to conserve.

Let me make clear what I am conserving. Not money, not land, not my tangible household goods. I'm good in that regard. I consider myself fairly thrifty and frugal, and I reflect regularly on ways to reduce my eco-footprint. I recycle and reuse. I limit my spending and vigorously eschew conspicuous consumption. While I am not at the same level of routine subsistence living as my son Sam and other millennials, I easily surpass most of my coworkers, all of my siblings, and many of my friends. Long before the Non-Consumer Advocate adopted it, I had already made this World War II slogan my own: Use it up, wear it out, make it do or do without.

So what am I conserving if not the treasures of this world?

I am learning to conserve me.

I have moved into a new phase of cancer: chemotherapy. My new regimen is two consecutive days (Tuesday/Wednesday) for three consecutive weeks, rest one week, then resume. Because I have am incurable, unsolvable, and terminal cancer, chemo is not for so many weeks or courses. It is an infinite loop until it or I fail.

It is such a wearying prospect.

I have just finished the second week of the first round. It could be a lot worse. Way worse. So far I am not experiencing acute nausea. I am unlikely to lose my hair. It does not take all day, only about three and a half hours with driving. On the first day, I went to our monthly legal clinic afterwards. I have gone to work afterwards three of the four chemo days. So I am well aware and grateful that I am tolerating chemo so seemingly well.

All the same, I am becoming increasingly aware that the chemo is charging a heavy tariff.  And in that regard, I am the wastrel, the profligate intent on squandering her assets while the tax collector waits in the hallway, shifting stolidly from one foot to the other.

Our home life often moves at a fast pace and as of late it has moved at a frantic pace. Most of the most frenetic activity is in Warren's spheres, which invariably spill over into mine, but some of it is of my own doing.

I need to learn to step away. I need to learn to turn off the engine. I need to learn to conserve.

I took a baby step a month ago, resigning my seat on our town's civil service commission. I have served on the commission since 2006 and that was a hard letter to sign. Afterwards, I cried, especially after the note from the fire chief arrived in my email.

I am taking bigger steps right now, wrapping up a yearlong court project with my old court. The project was community building in the truest sense and I am proud of my work. But as I draw up my project punch list, I find myself handing over the reins (and the paperwork and the responsibility) to the new court coordinator with a palpable sense of relief rather than reluctance. It is time to let it go.

I am learning to conserve myself.

The most daunting frontier of conservancy is personal. I can not, I will not winnow my friends. But I have to start limiting my engagements. And that is hard, hard, hard. No, I can't meet you for lunch; no, I can't do coffee that day or even that week.

It is hard and I resent it. But then I come back to the definition of "conserve" and the reality of my life now. To be able to work, I must conserve myself. To be able to write, I must conserve myself. To be able to be Warren's companion and helpmeet, I must conserve myself. Already others have called me on the carpet. My friend Kevin wrote "Especially while you are in treatment, if the choice is between baking and taking a break, you should take a break!" Kim echoed him in her email: "Lastly, I know you are the mentor and I am the mentee but I do have to say April take care of yourself. I only say this because it seems that you're spreading yourself really really thin even for person who had 100 percent health. " And my wonderful friend and coworker Dodie looks at me and says, bluntly, "April, just go home!"

So I must learn to conserve. My friendships will carry on, even if the emphasis shifts to emails and shorter contacts. One dear to my heart, discussing my health, wrote "God has blessed you both with many friends.  Hold tightly to them." I hold those words tightly and gratefully.

I find myself thinking a lot of Anne Morrow Lindbergh and E.B. White, the two writers I return to time and time again. Anne was famous for the sheer volume of friends and acquaintances she had. Her correspondences, tea and luncheon engagements, and evening events (plays, dinners, concerts, movies) were staggering. She wrote in her lyrical Gift From The Sea:

There is so little empty space. The space is scribbled on, the time has been filled. There are so few pages in my engagement pad, or empty hours in the day, or empty rooms in my life in which to stand alone and find myself. Too many activities, and people, and things. Too many worthy activities, valuable things, and interesting people. For it is not merely the trivial which clutters our lives, but the important as well. We can have a surfeit of treasures.

Anne did not often take her own wise counsel, although she passed it on.

At the other end of the social spectrum was E.B. White, who tended to lean far away from the limelight and the social bustle. Quiet and introverted by nature, he filled his days, but tended to fill them at his pace and with his writing. I have been rereading the exquisite Essays of E.B. White. White's writing is deceptively simple, so clean and clear that you read and then catch your breath in sheer delight. In one, he wrote:

There is one big boulder down in the pasture woods where I sometimes go to sit when I am lonely or sick or melancholy or disenchanted or frightened, and in combination with sweet fern, juniper, and bayberry this old rock has a remarkable restorative effect on me. I'm not sure but that this is the true energy, the real source of man's strength.

Fall is just over the horizon and conserving—canning and harvesting—is in the air. I don't have a rock but I can sit for hours on my deck and watch the bees ply the sunburnt flowers. Doing so has a remarkable restorative effect on me.

"Conserve" also means to preserve with sugar and a conserve is a candied fruit mixture, much like a very thick jam. It is time for me to take stock. It is time to candy those memories and store them against the darkening days, the gray winter ahead.

It is time to conserve.

Saturday, August 22, 2015

Inch Seventy-Eight: Farmers Market

We have an active and thriving Farmers Market in our downtown, Wednesday afternoon and Saturday mornings. You can buy jams, jellies, local produce, regional cheeses, plants, soaps, baked goods, and such at our market. In its first year, some 12 years ago, I sold baked goods and so kept my boys in shoes and pizza for the summer. I have good friends who are either selling or are volunteers to keep it running smoothly, so any trip to the Farmers Market is a chance to visit and reconnect and hug and share.

This morning, however, I was only walking by the market to get to our local library, so I could return a book. And I would have have made it, except for the young woman who, in addition to produce, was also selling art work.

I stopped and pointed to one. "Is that for sale?"

Yes. She told me her price. I held up the library book. "I have to return this first," I said, gesturing down the street towards the library, "and then I need to stop at my bank, but I want that."

And about fifteen minutes later, I handed her money and she handed me my painting.

I asked her if it was hard to part with paintings and she laughed. "Oh, yes," she exclaimed. "It is like selling my children." I cradled the painting I had just bought. "Well, if it is any consolation, this one is going to a good home."

I haven't hung it yet, but it is in my study as I type this. I can look over my shoulder and see it.

My blogging friend Darla at Bay Side To Mountain Side is a huge proponent of local art and the art economy. She would totally understand buying art instead of tomatoes and corn this morning. The tomatoes and corn can wait. The art could not.

Friday, August 21, 2015

Inch Seventy-Seven: Small Wonders

This is what I call a Maine morning: chill and dewy in the early hours, warming with a bright but not overbearing sun now that it is almost midday. I went for a walk with my friend Patricia earlier this morning and the long-sleeved jersey I wore was not a bit too warm. While I type, the last two loaves of zucchini bread for the season are in the oven and the towels are in the wash. The zucchini bread will come out probably about the time I finish hanging the towels on the clothesline to dry.

This has been a most unusual summer for central Ohio. It has been cooler than usual. We have not turned on the air conditioning one time, and there has been only one or two days when it even crossed my mind that air conditioning might be nice. There have been days when I have left for work wearing a sweater; there have been evenings when I have curled up to read with a throw over me for the warmth.

In short, just about perfect.

This has been a week of change for me and Warren here. I have started what I consider "traditional" chemotherapy this week. The drug I take is administered intravenously two consecutive days, three consecutive weeks, wait a week, then repeat. Myeloma chemotherapy is in a niche all its own in the chemotherapy world; no hair loss, typically no intense nausea, and time-consuming not because the drug takes so long (it takes about ten minutes for the infusion) but because my veins must be flushed slowly with saline for an hour prior and flushed more quickly for 30 minutes afterwards.

This week was a good introduction to how blown apart my schedule (and Warren's by proximity) will be for the indefinite future. Add that my arms are bruised and I am tired. There were two nights of lost sleep thanks to a low dose of Decadron through the IV and the nausea has hung off on the far horizon since Tuesday, enough to remind me it is here.

In short, I am resigned.

So small wonder I am taking such pleasure in this spectacular day, the smell of cinnamon and cloves rising from the kitchen to my upstairs study, the anticipation of taking down the sun-bleached towels later today. Small wonder that I laughed at Warren's playacting this morning before he drove to work, chatted with a dear friend in the old neighborhood when I walked over to meet Patricia, hugged Patricia hard when we parted ways after our walk. Small wonder that as we walked this morning, heading around the familiar park loop, I often turned my eyes to the sky, drenching my soul in the burning blue. Small wonder that I am holding the moments of this day close to my heart: the finches in the coneflowers, the bees hovering in the blanket flowers, the soft sweetness of the homegrown cantaloupe that my dad dropped off off last night. It is these small wonders that will carry me through the new sector of Cancerland I find myself wandering in right now. It is these small wonders that will rally me when my spirits flag in the days to come.

It is these small wonders that make up this moment.