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.

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
And
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
Thing
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.

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.

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.

Inch Seventy-Nine: Learning to Conserve

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.

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.

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.