KGB

Tim Moore, my oncologist, once said I should not panic about the myeloma showing up in low levels in my lab work. There would always be traces of myeloma in my tests. His job was to monitor those traces.

"It's like looking at a picture of Russians gathered in Red Square," he explained. "You know everyone in the picture is Russian. And you know some of them are KGB. But you don't know, just by looking at the picture, who is KGB."

For a long time, it was just Russians in the picture.

Not now. The KGB was there all the time, the agents just waiting for the right time to muscle their way to the front.

I had seen Tim in October for my six month check. After looking at my lab results, with their inexorable drift towards the myeloma reactivating, and after listening to my laundry list of an increasingly diminished quality of life, he said, "I'm not panicking yet, but has this caught my attention? Absolutely." When Tim said he wanted to see me in November, rerunning the labs for that appointment, my heart failed a bit. It would be the first time in years that I would see Tim in consecutive months.

I saw Tim last week, the Tuesday before Thanksgiving. I had lost four more pounds. I was even more worn out than before. We talked, Warren chimed in, and then Tim said, "we can start chemo today. Do you want to?"

Do I want to? Well, define "want to." No, of course, I don't "want" to. I "want" not to have to deal with myeloma, I "want" not to feel my world is caving in. Of course, I don't "want" to start chemo.

But I don't live in that world—that world without myeloma. Myeloma is incurable. It is chronic. It is forever, until there is no forever left for me. I live in Cancerland permanently. In Cancerese, the official language of Cancerland, "want" means something different. It means "willing to do this to feel better and try to shut down the cancer again."

If you define "want" in Cancerese, then of course I "want" to start chemo.

So I did. Within an hour I received an injection of bortezomib (Velcade). Assuming all goes well, I'll receive a shot once a week for three weeks, take a week off, and then we will assess where I am at in the cancer spectrum.

Clearly this will be my new normal for the foreseeable future and like any new normal, it will take considerable adjustment. I am still getting up to speed intellectually on Velcade. The physical learning curve will be even steeper. There has been nausea, there has been sleeplessness. There have been half-eaten meals, as even without the nausea, my appetite is uneven at best.

And there have been long, internal assessments of where I am at in life, what lies ahead, what lies behind.

After that first dose of chemo, I went that night to our monthly legal clinic. I held my thoughts and my new status to myself while we served our community, dispensing cookies and comfort. Over the next few days, I shared the news with a few people in the innermost circle of my life. On Thanksgiving, outside out of earshot, I broke the news one by one to my dad and two of my brothers. I sat down the next day and shared the news carefully with my mother, who took it somberly and quietly. I have notified co-workers. This post is my way of heaving the rock of myeloma into the pond and watching the concentric rings push out from the point of impact.

When I was diagnosed in 2004, I threw a big party. I am likely to do so again—the "Party Like It's 2004" party. The house will fill with my friends, part of that army of supporters who have stood with me all along. There will be good food and good talk and love and solidarity.

My Blogville friend Ellen once said, in response to a post about the KGB, "You have an army of friends to back you up, and we shall learn to speak Russian ASAP to be at your side."

I don't know about learning Russian. I'm typically all thumbs at learning languages, other than Cancerese, in which I am fluent.  I don't know how to say, "I can do this" in Russian. But I have already learned one important word and say it now to my friends and family as they stand with me.

Spasibo. 

Thank you.

Fox in Box

Not the fox that we saw, but darn close! 

Margo and I were sitting at the front table by the window of our local bookstore when a young man walked up Sandusky Street carrying a large rectangular box. The box lay lengthwise in his arms, parallel to the ground, and we could see two alert ears sticking out of the open end on the far side.

Margo, a dog lover, said, "Oh, he has his dog in the box." I said, "Those aren't dog ears. They're too red."

We both said, simultaneously, "Fox ears!"

"Fox in box!'

Margo and I chattered at one another, laughing. The young man stopped at a car and set the box on top, open end now facing us. He indeed had a fox in the box, albeit a mounted one.

This seemed even more ludicrous to the pair of us.

"It has a paw raised," I observed. "You could get a pair of socks, put one on that paw, and have..."

"Fox in sox!" said Margo, and we both laughed again.

We watched, all the while throwing out words that rhymed with "fox," while the young man, now joined by a young woman, grappled with how to stow the fox in the small car they were driving. The fox stood immobile on top of the car while they moved items around.

Margo noticed that the car was from out of state. We wondered how they came to Delaware to acquire a fox. Margo speculated that perhaps they had searched online for the fox and found one for sale downtown. I surmised they were passing through, had stopped to eat breakfast at our downtown diner (which is across Sandusky Street and several storefronts down), and in crossing the street to return to the car, had seen the fox in the window of an antique store a few storefronts away from where we now sat.

Whatever the story, both of the travelers were giddy with their acquisition. A passerby stopped to admire the fox and they asked him to take a picture. They beamed proudly while the fox stood rigid in the background.

As they continued their quest to fit the fox in the car, Margo mused that perhaps they were on their way to an early Thanksgiving celebration.

"Can you imagine the reception they will get when they arrive? Look, Mom! Look at what we brought!"

I watched as the young woman moved a very full garment bag from the back seat to the rear of the car.

"I think they're going to a wedding."

We both wondered aloud whether the fox would be a wedding gift. "You have your stemware, the bath towels, the silver salad servers, the fox..." said Margo.

"Yes, but but no one would ever forget that wedding present," I noted.

A few minutes later, the fox was finally in the car, although the box was not. The young man walked the box down the street and returned quickly. (I knew it had come from the antique store.)

They drove off. Margo and I went back to talking about more routine matters. I made a mental note to send a copy of Fox in Sox to Ramona Dawn. A woman driving a van pulled into the space next.

She did not have a fox.

Community

A lot of Facebook friends this month are posting daily notes about what they are thankful for. I'm not one of them, but seeing their comments causes me to keep the question front and center.

For what am I thankful?

Today it is community.

This morning is the annual Kiwanis all-you-can-eat pancake breakfast. Warren and I went; he was having a Symphony meeting afterwards. As we walked towards the doors of the middle school in which the event is held, the question came back to me.

For what am I thankful?

Community.

I am thankful that the greeter was Bob, a longtime friend, who shook Warren's hand and gave me a hug.  I am thankful that I saw Kiwanians Judy and Sharon in the commons, that Jim was behind the cafeteria case helping to serve, that Mary Jean called out "hi, April!" from further back in the kitchen.

Community.

Bob P., who used to run the downtown dime store, was anchoring a table of cronies. Jack, with whom I serve on the city's Civil Service Commission, came by and chatted with us both on his way out. All across the room, I saw familiar faces.

Community.

Community is the young family that had just arrived and the gleeful look in their little boys' eyes as they got into line. Excitement at being there? Or anticipating all the pancakes they could eat?

Community is the high school swim team arriving straight from practice and swelling the line. Their coach is the son of the man who greeted me at the door.

Community is the friends waving across the commons, stopping at one another's tables, hugging someone they haven't seen in awhile.

Community is my making coffee plans with Margo, who was there for the Symphony meeting, and then running into her husband, Gerald, who was there for the pancakes. Gerald and I hugged, we talked, and then he headed inside to eat while I walked home.

I thought about community all the way home. Kiwanis was getting a good turnout today. It would be a good event.

When I was young a half century ago, a neighbor took me and my older brother to the Kiwanis pancake breakfast. Back then it was held in the gym of the junior high. I still remember being awed by the ranks of tables, every seat filled, by the chattering and bustle of so many adults, and by the endless supply of pancakes.

I did not fully realize it at the time, but even then I was impressed by the sense of community. I may not have had a word for it, but even at that young age I had the feeling that these people, these adults, had all come together for some common good.

Community was evident at the pancake breakfast today. It was evident in the large line, in the hugs and calls, in the faces of the Key Club members clearing tables. Community was threaded through the room, binding us together and helping to keep us intact.

As I was leaving, the swim team coach was arriving. His mother had gotten there ahead of him and she had already scanned the room for him before asking, "Where is my son? I see the team, but where is he? He needs to be here!" As I passed Bill, I warned him. "Your mother's already asking where you are. You better get in there!" He laughed and headed inside to join his family, to join his team, and to join his community.

Family Ties

Aunt Eunice died mid-October.

This was not entirely a surprise. Aunt Eunice (my dad's aunt on his mother's side) was 97 and a few months back had broken a hip. She had been poorly (as they say down home) ever since. And now she was gone.

The funeral was two days later, down in Greenup, down in my dad's homeland. I was able to join Dad and my youngest brother, Mark, for the trip down.

I am so grateful I could.

"Quality time," and by that I mean not hemmed in by other demands, quiet enough to concentrate on one another time, with Dad or Mark is hard to come by. Mark has a busy life, I have a busy life, Dad, for being 79, has a busy life. So just the three hour drive down Route 23 was a gift. We talked, we shared memories, we were quiet together.

It was raining lightly in Greenup when we parked at the funeral home. We all three more or less hop-skipped the puddles in the driveway and entered the building.

Walking in, I was facing a wall of family. "The cousins"—Dad's cousins, really, but folk we always called our cousins too—were there in full force, some in the lobby, some in the big room. Cousin Sharon, Eunice's daughter, came over and hugged me. Cousin Judy, Helen's daughter, knew me because I walked in with Dad.

Then I saw my cousin Sandra Kay, "Sandy" now. We pointed at one another across the lobby, then met and hugged hard. "I miss you so much," I blurted out.

Sandra Kay is older than me by a few years. We saw a lot of each other growing up, as my family would often travel to Greenup to see my great-grandmother, who lived in a little three room dollhouse on the edge of the property owned by Sandra Kay's parents (Aunt Helen and her husband). Back then, Sandra Kay lorded her age and maturity over me every chance she got.

Now those years are not so big a gulf. In fact, now those years are not a gulf at all, hence our hard hugs.

For the entire two hours of the calling hours, there was a lot of catching up to do with a lot of family. I bent down to talk to Uncle Burl, the baby of a large family that is down to him now that his sister Eunice is gone. Burl was always my favorite, a tall, handsome man with a honey smooth voice and a knack for storytelling. Now Uncle Burl is bent by age and Parkinson's, and his voice, always so strong, is so soft you have to bend close to hear him. His illness causes him to carefully thread together his sentences, so it was a slow conversation. But flashes of his smile would play across his face, and he told me and Mark, who'd also stooped down to talk, a story about his father, our great-grandfather, that I had not heard before.

After the funeral service, about half of us drove out Route 2 to the Gullett family cemetery. It is not unusual in Kentucky for the old-time families to have small cemeteries, usually started well back in the 1800s, atop this or that hill. I had not been up to the Gullett cemetery before but it was like the Nelson one a few hills away: to get to the top meant a long walk up a steep dirt road.

The cemetery was small and somewhat overgrown. Uncle Burl used to maintain it, but doing so has been beyond his capacity for some time. Still, we had no trouble walking around looking at headstones. My great-grandmother Gullett is there, as is her husband, my great-grandfather, who died three years before I was even born.

After the graveside service, Cousin Jimmy, Eunice's son, called out to the rest of us. "This is the last burial that will be up here." He pledged to continue to maintain it. His voice broke as he added, "for as, well, for as long as I am able."

There are family ties and there are family ties. As we drove out of the valley back to Route 23, Mark said that he always felt he was at home when he was in Greenup. I responded, surprised, "You do? Me too!" It is the one place we both feel centered, even though neither of us live there. For me, it is the one place in the world where I can look around at a gathering, or even in a store, and see people with my facial features. Like Mark, I am "at home," in some deeply fundamental way, when I enter this valley.

With each passing generation, the earthly ties to Greenup, to Route 2, to W Hollow Road, to the tiny cemeteries tucked atop the hills, grow fainter. I don't know if I will ever make it down here with Dad to go to the family cemeteries. When Uncle Burl dies, we'll gather together but it will be somewhere "out" on the flatlands. I doubt my children will ever make a pilgrimage to this area, even though a full quarter of their blood runs right back to this valley threaded by the Little Sandy River.

At the funeral home, cousin Janet, Eunice's oldest daughter, introduced her oldest daughter to Dad, reminding him he'd probably last seen her when he was spending weekends in Kentucky looking for work. Dad used to come down to Kentucky and look for work? I pounced on that comment and asked him over supper on the way home. Turns out that after he was out of the Army, jobs were hard to come by in Ohio and he had a wife and children to support. So he would drive down to Greenup on the weekends, sleep on a couch at Janet's house, and make the rounds of the railroad shops and yards looking for a job. He must not have found one, because he and Mom still live in Delaware almost six decades later. Still, it made me wonder how I would have turned out, who I would have become, had I grown up in this valley I still feel pulled to after all these years.

When I got home that night, I noticed there was a fine clay dust from the cemetery road on the hem of my slacks. Try though I might, I could not brush it off by hand.

Small wonder.

Hunkering Down

The unseasonably warm weather we had last week turned cold and wet abruptly. This weekend has been blustery and and rain-spotted and windy. As Hurricane Sandy and the other storm hurtle towards their rendezvous on the east coast, gray clouds churn and toss overhead.

In response to the weather, I am hunkering down. We ran a series of errands yesterday and somewhere along the way I splurged (a $6.00 splurge, mind you) on a new pair of sweatpants. I had been wearing the same pair for over 20 years, and besides being old and worn and faded and too big, they had pretty much lost any fleecy lining they had. I thought my budget could stretch to allow the small luxury and the old ones hit the trash with an unceremonious thud when I got home. I am wearing the new ones right now while I sit and write, looking up from time to time to see the dogwood branches lash their own trunk.

When we got home from our errands, I got serious about hunkering down. I put two huge pots of soup beans on to soak, then went outside to cull the remaining peppers from the garden, which is done for the season and needs to be torn down. While the beans soaked, I sliced and froze the peppers, peeled, sliced, and froze bags of apples for pies. Mid-afternoon, I set the beans to boiling, adding beef and onions to the pinto beans, ham to the Great Northern. I started dough for pizza.

Late afternoon, while the dough rose and the soup beans bubbled, I wrote Ben and Alise: I am thinking of you three and Sam, wishing we could have you over for supper and laughter and playing board games tonight. It is a cold, misty, gray day and perfect for that. 

The change in weather always brings out this response in me: hunkering down, gathering in, drawing together. When my boys were little, weather like this would cause me to bring them in early, tuck them in under extra blankets, check on them extra during the night. I just needed to know, needed to see the proof with my own eyes, that they were warm and cared for while they slept. Now that they are grown and 2500 miles away, my instinct is still to reach out to them and draw them close.

Last night I started to reread (for at least the hundredth time) The Hobbit. There are an abundance of marimbas in the percussion room right now, or I would have had Warren build a fire last night. Instead, I kept the corn bags extra warm all evening and then went to sleep in a bed smelling like a corncrib on a hot afternoon. 

It is Sunday afternoon as I finish these lines. Warren is working in his shop, creating a new instrument. I have soup beans to put into containers and freeze for the blustery, cold days of winter yet to come. We are skyping later today with Ben, Alise, and Ramona, who I understand has now discovered her hands.  I left Bilbo and company in Mirkwood Forest last night and I will pick back with them tonight. My kids may be 2500 miles away, but I can at least see Bilbo back to his own front door.

Updates

Every now and then, a post cries out to be updated. Sometimes the update comes about because of something a reader or friend pointed out, sometimes an update comes about because of the passage of time. Here are three recent posts that are just ripe for updating.

North

I raved about this play two weeks ago, having seen its final "rehearsal" before the for/word theatre company headed to New York for a one month long off Broadway run. 

Here's the great news. North is getting some amazing reviews.  

Did I call that one or what? 

If you want to read the reviews in their entirety, they are on the for/word company Facebook page. If you want an amazing theatre experience and are in New York this month, buy a ticket. Then sit back and fly.

The Wasp and the Nose

Back in August, after a trip north to Wisconsin, I wrote about being at Yerkes Observatory after over three decades. A few readers clamored for the "story" behind the chiseled columns and I told what I knew of it and what I was able to piece together from various Yerkes sites.

This week has been a grueling one. It is Concert Week, which of course means Warren is working 100+ hours and our personal schedule has been booted aside. On top of that, I attended a two-day seminar on mentally ill juveniles in the court system. Excellent speaker (she spoke eight hours each day with the barest of outline), excellent information, absolutely and totally draining. So it was great delight that after dragging home the first day, I found an email from one Richard Dreiser, who has been giving tours at Yerkes since 1980.

Richard pointed out a factual error in my post (the observatory was dedicated in 1897, not 1896 as I had erroneously written). Factual corrections are always welcome. But what warmed my heart and has left me with a debt of gratitude to Richard was his sharing two photos from Yerkes.

The first is one of him holding a photograph of William Rainey Harper, the first president and the force behind establishing the University of Chicago as a bastion of higher education. 

Richard Dreiser and William Rainey Harper

Richard commented that he doubted the wasp ever had a face (and you will see why he feels that way in a minute) but that the chubby man below Rockefeller (whose nose you can just see at the top of the column) is almost certainly Harper minus his glasses and with an adjusted hairline. Given the satire afoot in the column, I agree with Richard.

But here is the photograph that blew me away:

Rockefeller and the Wasp

Richard believes this photograph dates to 1899, which is after the dedication and suggests that it took some time before George Ellery Hale convinced University officials (no doubt Harper) that the wasp had to go. Given the caricatures carved into the column, I might suggest that Harper had a better sense of humor than Hale. 

Ramona

I have not blogged a lot about Ramona yet. She still seems so new in the world, at least from my vantage point in Ohio, that there is a fantasy-like quality to her existence at all. Last weekend, Ohio and Oregon skyped, and seeing Ramona in her baby seat, kicking and bubbling and cooing, made her real in ways that I had not grasped before that moment. (Yes, I babbled incoherently for the first several minutes.)

Since my last post about her, Ramona has traveled a bit (Montana and New Orleans), been baptized (by her grandfather, who also married her parents two years ago), and has attended not one but two powwows. That's pretty good for a kid who is only six weeks old as of today.

Ramona and Grandpa Joe at the baptism

As I noted above, it's Concert Week. More to the point, the Symphony opens its season tonight. Tonight. I feel the clock ticking and it is time to turn away from writing and turn instead to the rest of the day. More Ramona photos and stories will follow in the months to come. For now, I will leave you with this image of Ramona at her second powwow, this one in Helena, Montana. Note what she has on: her fancy dance shawl! 

With Aunt Jenna at the Montana powwow

Autumn

Fall has moved into central Ohio on little cat feet, stealthily and steadily, until one day recently I looked up and said, "Oh, it's here!"

My walks—to and from downtown or with Patricia in the mornings—have been particularly rich as of late. Patricia and I will be walking the loop at the park, deep in a talk about the things two old friends discuss, and one of us will point, mid-sentence, at a gold crusted maple catching the morning sun. Walking downtown today to meet up with Warren for lunch, I chose my favorite route (Franklin Street) and noted with deep satisfaction the layers of leaves on both sides of the street. It is an old neighborhood, full of tall trees that blanket the sidewalks every fall. Walking the route in reverse after lunch, I purposefully crossed to the west side of the street so I could shuffle through the crackling accumulations. The red and golden leaves had drifted against the stone wall and over the steps of the little red house that sits on a small rise, so perfect that I wanted to wrap my arms around it and carry the scene home in my heart. Even as I write these words sitting in the second floor study, I can swivel around in the desk chair and see a maple, torch red, out on the tree lawn.

Like White's Mr. Trexler, I want the second tree from the corner, just as it stands.

Someone recently asked me whether my boys had liked to jump in leaf piles when they were little. Liked to? That would be an understatement. Our backyard was awash in leaves, mostly from Tom and Pat's towering oak trees next door, and every fall we raked and piled leaves over and over. It seemed a Sisyphean task at times. But the boys loved it. The piles would be so large that they and their friends could disappear into them and only by watching for an extra quivering did you know where this or that boy was hidden. Sam as a toddler would be swallowed up in the piles; with his then reddish hair, he could sink into the leaves and be camouflaged perfectly until his giggles gave him away.

As I walked home today, I thought about those long ago leaf piles and the unadulterated pleasure of playing in them. What is it about leaf piles that sets them apart? Perhaps it is that they engage the five senses: the smell of the leaves, faint with decay but not yet moldy, the sound of a thousand of them crackling and snapping and popping when you land in them, the papery dry feel of them against your skin, the sight of all that gold, all that red, heaped to the skies, the faint tangy taste in the air when you dive in deep. Is that what it is?

Or is it something deeper? Something more elemental?

There is a passage at the very end of Book Five of The Odyssey that has always moved me. Odysseus has barely survived a great storm at sea and has finally made it to land, spent and worn. Making his way into the woods, he rakes together a bed of deep leaves. "As a man will bury his glowing brand in black ashes, off on a lonely farmstead, no neighbor near, to keep a spark alive—no need to kindle fire from somewhere else—so great Odysseus buried himself in leaves and Athena showered sleep upon his eyes." (Robert Fagles translation)

When it comes to Ben and Sam, I have often tucked my memories away deep, their glow buried in the ashes of time to keep the spark alive. Seeing the golden and red trees lighting my path yet again this season, I have no need to kindle my fire from somewhere else. It is already within me.

Fall, 1992: Sam is 2, Ben is almost 7