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.

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 pin...my soul was soothed and my heart mended a little more."

It is the day after Newtown and I am baking.

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.

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.