One year in

One year ago today, I learned a new word. I wrote about it at the time.

 

***

December 4, 2017:

I learned a couple things today.

First, I learned a new word, which I’ll get back to in a minute.

Second, I learned it is possible to see your wife receive a diagnosis of Grade Two brain cancer and feel an overwhelming and immediate sense of relief.

The new word: Oligodendroglioma. A type of brain cancer. Like all cancers and tumors, it can be graded according to its malignancy. Grade One is benign; Grade Four is the most aggressive, and usually deadly.

Today, we got diagnosed with a Grade Two: malignant, but not aggressive. Slow-growing. Treatable. Comparatively favorable long term prognosis. We received this diagnosis perhaps an hour after receiving a different diagnosis, that of a Grade Three Astrocytoma. The sense of relief from the improved diagnosis was nearly overwhelming. The next year, the next two, three, and five years of my life look very different with a Grade Two diagnosis than they did for the brief window we had a Grade 3.

To be clear: the next two, three, and five years look incredibly difficult and challenging. We are looking at brain surgery as our starting point. Perhaps before the end of this week. Definitely before the end of next. We are looking at chemotherapy. We are looking at clinical trials, follow up appointments. Scans and different kinds of scans, and then other different kinds of scans after that. Every aspect of our lives will be impacted. The glue that binds this family, the engine that keeps us running (choose your metaphor, both are apt), is sick, and it will be some time before she is well.

***

Brief aside, regarding my personal vocabulary: Astrocytoma is a word I am already familiar with. Astrocytoma, or Glioblastoma, as it’s called when it progresses to Grade Four, killed my father-in-law not 18 months ago. Our family’s prior experience with brain cancer illuminates every reality we are currently up against with an unmistakable clarity.

***

Everything began on Saturday, late in the afternoon. My wife, complaining of a headache, mixed together birthday cakes for our two younger children, who were celebrating their sixth birthday. She put the cakes in the oven, sat down in a chair, and the next thing she remembers is being in the back of an ambulance.

My recollection is not so spotty. I was in the basement when I heard my three children yelling. Nothing new or suspicious about that. I finished loading the washer and hit start. Coming back up the steps, I ran into my son, who an hour earlier had been enjoying his birthday party, telling me something was wrong with Mom. His twin sister and their older (age 8-½) sister were at the top of the steps, yelling the same. I picked up my pace, came into the living room, and found her reclined in her chair, in full arrest. Her entire body convulsing. Foam forming at the corners of her mouth.

I know that’s a disturbing visual, and I apologize. But this is a disturbing story, and I don’t know the next chapter, let alone the ending.

It is now two days later. Two nights in the hospital for her. Two solo nights handling children’s dinner and bedtime for me. Countless examples of friends and neighbors eager to help in any way they can: Can we take the children for a night? Can we bring dinner? Anything you need, please let us know. Tonight’s dinner was provided by one friend. Tomorrow’s dinner was just moments ago delivered by our neighbor. They are all good people, and their desire to assist us is touching. But it’s hard for me to grasp things on that day-to-day plane. I don’t know what to ask for, I don’t know what we need. I feel I have to get into this process before I can begin to know what I need. I need to learn what I can let go of, what I can hand off, and what I need to step up and handle more of.

It will be that way for all of us. The next year or more of our lives stretches out before us like a vast, uncharted sea. I have spoken to my children about the need for all of us to understand that when she comes home, that does not mean life returns to normal. It will be difficult in more ways than I can imagine. But we will see our way through it, no matter where and how it ends.

My wife comes home from the hospital tonight. Her mother will bring her here. I imagine we will stay up late discussing what the next steps, the first steps, on this journey will be.  

***

Now it’s a year later. She is currently on what we hope will be her final cycle of chemotherapy. Return visits to NIH in Maryland, where she had brain surgery eight days after that was written, have generally borne good news. MRIs have shown no visible tumor tissue, which is the best possible result. But “cancer free” is not part of our lexicon. Nor is “Remission.” Those terms don’t apply to primary brain gliomas. Gliomas grow back. Always.

We are fortunate that Grade Two Oligodendroglioma grows slowly. We were told Carolyn’s tumor may have been growing for a decade. Our hope, our goal, is that medical science outpaces slow growth.

A year ago, I believed that 2018 would be remembered as “our cancer year.” And to a large extent, it will. But the battle isn’t over. We will fight this every day for the rest of our lives together.

State Fair

Yesterday, we took our annual trip to the Illinois State Fair. I wouldn’t say it’s a high point of the summer, but it’s at least noteworthy. Something the kids definitely look forward to.

State Fairs strike me as a principally midwestern phenomenon (apologies to North Carolina, which is also quite pround of its Fair). Growing up in Pennsylvania, the closest approximation seemed to be the Farm Show, held every January. The Farm Show was a lot of things, most of them genuinely enjoyable, but it wasn’t a Fair. There was also the Bloomsburg Fair every autumn. I went to college not too far from Bloomsburg, and we made the pilgrimage a couple times. But even Bloomsburg wasn’t a STATE Fair.

The idea of a State Fair seems directly proportional to a state’s agriculture industry. Iowa’s is probably the most well known, as it makes the national news every four years when would-be Presidential candidates descend to show everyone how “real” and “normal” they are as they make big displays of their willingness to eat deep fried pickles and various types of meat-on-a-stick.

The other thing about State Fairs — or Illinois’ version of one, anyway — is how frozen in time they feel. Everything feels straight out of the 1950s, or even 30s. Traveling carnival rides, rigged games, farm animals on display, and a cornucopia of different foodstuffs all but guaranteed to give indigestion.

Also, the color. Nowhere is the color more vibrantly on display than in the carnival midway area, where my kids’ growth can be measured not only by the “You must be this high to ride” signs, but by the rides they are now either brave enough to try, or disdain as “for babies.”

 

 

Unknown-1This year’s highlights included the Crazy Mouse, a sort of spinning roller coaster light years more daring than any ride they’ve attempted before, as well as annual highlights like the Farmer’s Little Helpers display, and the butter cow, which made headlines this year for the misspelling of the word “Bicentennial” that no one noticed until its unveiling on the Fair’s first day.

Perfectly imperfect. Just like the Fair itself.

On Charlottesville

A year ago tonight, Heather Heyer was alive. White nationalists with torches marched on Charlottesville, chanting “Blood and soil!” They numbered in the hundreds, and menacingly surrounded a small number of University of Virginia students who had themselves encircled the statue of Thomas Jefferson in front of the famed Rotunda.

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Perhaps 100 feet east of that statue, a bench sits under an old magnolia tree. It was not quite ten years ago that my wife and I sat on that bench, weighing the pros and cons of uprooting our lives and moving from greater Boston (Somerville) to Charlottesville, or C’ville, as we came to call it.

The pros won out that afternoon. In a matter of weeks, we (she) would receive and accept a job offer. Also within weeks, we (again, she) would become pregnant with our first child. Our first two children, as luck would have it.

Over the ensuing five and a half years, C’ville was home. The pros did not win as often as we had hoped. The job she accepted turned out not to be what was promised. My eventual employment at the University was fulfilling but ultimately short-lived. We made many acquaintances, but few genuine friends.

But our children were born there. Our older son lived his entire life there, 31 days in the University hospital. The outpouring of concern and affection in the wake of his death will always be with me. The people of Charlottesville are, with very few exceptions, good people.

I often wonder what I would have done, had we lived there a year ago. I remember the rage I felt a year ago, seeing that torch-wielding mob surrounding those students. I imagine I would have felt it even more intensely had C’ville still been our home. Still been my children’s home. I feel, in my heart, I would have been on the downtown mall that Saturday, after seeing those images. I know I would have been counseled by my parents to avoid it. Perhaps even by my wife. Or perhaps I would have gone in her stead. I don’t know. But I feel I would have gone.

Maybe I would have been blocks away from where Heather Heyer stood. Maybe I would have been right next to her. It’s all conjecture, all unknowable.

There were many reasons my wife and I moved to Charlottesville. Over time, few of those reasons panned out. But for five years, it was home. It’s where I became a father. It’s a beautiful city, and will always be an important part of my life. I hope everyone there has a peaceful weekend.

America’s game ain’t cheap

My son started tee ball last weeks. He’s pretty excited.

This will be his third sport, following past dalliances with hockey and soccer. It is already the most expensive sport we’ve signed him up for. Yes, more expensive than hockey.

The hockey league he tried was sponsored by the NHL. Everything – skates, pads, jersey, pants, gloves, helmet, stick, and gear bag – was branded with the Chicago Blackhawks logo. They were the Little Blackhawks. All that gear, plus the eight week introductory league, was $85. He took two sessions of that introductory league before deciding it wasn’t for him. $170 for his brief foray onto the ice. Not cheap, but not terrible. And we keep the gear. We could probably recoup some of our cost by taking it to Play-it-Again Sports or some other sports re-seller. More likely, we will just donate it.

Soccer was even cheaper. Cleats, shinguards, ball. Boom, done. Throw in registration fees and youth team sports don’t get much cheaper than soccer.

Which brings us to baseball. Even with recycling his soccer cleats, tee ball (and the baseball that follows it) is deceptively expensive. Our registration fees included nothing other than getting his name on a roster. Everything else, even a hat, is on us to provide. The cheapest glove available was $35. The cheapest bat — a “tee ball only” bat that apparently would burst into flame if used to strike a pitched ball — was another $25. Which actually isn’t so bad. But this is strictly entry level stuff; if/when he requires another bat in a year, the median price range appeared to be in the $70 neighborhood. Batting helmets allegedly are provided for games, or so says the coach. But he didn’t sound too sure that would actually be the case, so tack on another $17. Other items we decided against buying until we know whether he intends to play for more than a year or two. But they will add to the cost.

Baseball is America’s game. College and professional football have outpaced baseball as an industry, as a passion for fans. But baseball is still America’s game. Football never goes in a sentence with Mom and Apple Pie. Major League Baseball could take a cue from the National Hockey League. We live in an era where more and more parents are growing reluctant to let their children into football. It would take next to nothing from baseball’s profitability to step in and eliminate cost as a deterrent from getting kids to play.

The teams in my son’s league take their names from their MLB counterparts. There are Cardinals and Red Sox and Dodgers and Royals and even Expos. My son’s team is the Cubs. It’d be nice to see MLB invest itself a little more in making playing the game a more attainable goal for its youngest fans.

Take me out to the ballgame

This weekend, my family and I travel to Kansas City. We may visit Legoland. I would very much like to visit the Negro League Baseball Museum (particularly in light of recent incidents of vandalism targeting Negro League sites in and around Kansas City.)

The real reason for the trip is to take my kids to their first Red Sox game. The tickets were a birthday gift to my older daughter, who has always followed my lead in rooting for the Sox. (Her younger siblings have bounced around, at various times declaring themselves Cardinals, Cubs, and even Pirates fans. Although in the months since we announced this weekend’s trip, they have now followed their sister’s and father’s lead. We are a family of Red Sox fans. A poster of Mookie Betts hangs in my son’s room, a declaration of his undying fandom since 11 weeks ago.

This will not be their first trip to the ballpark. A year ago, also for my daughter’s birthday, my mother-in-law purchased tickets for a Cardinals game in St. Louis. My M-i-L is a diehard and lifelong Cardinal fan, having grown up here in the Midwest. She had hoped to make at least one of her grandchildren into Cards fans as well, and for a while it appeared she would be successful (note that the hat on the hot dog eating boy is a Cards hat). But a year later it appears I have won that battle. Sorry, Nona.

Regardless, the far more important thing is that they are baseball fans. I would rather raise a Yankee fan than a kid who didn’t like the game at all.

I have been to somewhere, I would guess, between 100 and 150 Major League Baseball games in my life, and probably a couple dozen minor league games (my post-college years were spent living walking distance from the Eastern League Harrisburg Senators). Kansas City will be the eighth stadium in which I’ve seen a game. I don’t remember all of them, but a few stick out.

 

June 21, 1977. To the best of my recollection, my first game. Baltimore was just a 90 minute drive from where I grew up, and it seemed we always made the trip for at least one game whenever the Red Sox were in town. We sat in the bleachers in right field. Luis Tiant threw a two-hit shutout. But what I really remember is George Scott hitting a home run, and my Dad teaching me that Scott’s homers were called “Long ‘Taters.” Jim Rice also homered, and he would spend much of the next 12 years as my absolute favorite player.

I probably saw somewhere between 15 and 20 games in old Memorial Stadium in Baltimore. It was a perfectly ordinary stadium, but kind of close to my heart anyway. Fenway is the only park I’ve been to more frequently. My last visit there was for a Steelers/Ravens game in 1996. RIP.

July 16, 1978. I stumbled across this one on Youtube about a month ago. I had sort of forgotten about it, but as soon as I saw the screen grab from the video, it jolted my memory. I knew it was after arguing a pickoff play before I even clicked to watch. I knew the manager threw bats on to the field during the course of his tirade. It’s weird, the things that embed themselves in the brain of a seven-year old. This was game two of a Saturday double-header. Baseball Reference tells me Rod Carew went 4-for-9 on the day, because of course he did. Carew also collected his 2,000th career hit in game one of the series.

By the way, I appreciate that use of instant replay to correct umpire errors is a net good thing. But we lost something when we lost purple-faced managers going absolutely bonkers over a missed call. If this happened today, Gene Mauch would calmly ask for a replay, the play would be overturned (he was definitely safe), and not one single seven-year old kid in attendance would remember it 39 years later. That’s just sad.

June 21 and 27, 1986Roger Clemens wins his 13th and 14th consecutive games to start the season. Over two starts, he throws 16 innings and strikes out 17 Orioles, allowing four earned runs. Ho hum. The first of these two games, in Fenway, I purchased a white towel with a red “K” on it. The following week, in Baltimore, I brought the towel with me, and promptly lost it in the parking lot after the game. C’est la vie.

Note: I know how it ended, but the 1986 season was my absolutely favorite season as a Red Sox fan. Clemens, winning Cy Young and League MVP. Jim Rice, with a final renaissance season. Dwight Evans and Wade Boggs, doing Dwight Evans and Wade Boggs things. A 10-game September winning streak to finally put away the Yankees. And the epic ALCS comeback over the Angels. The World Series disaster that followed does not erase all that. It just doesn’t.

Sometime in the summer of 2005. Visiting friends in Chicago, we attended a couple games in Wrigley Field. Sat in the center field bleachers for one game, down the left field line in Ferris Beuller territory for the other. We averaged about one Old Style per inning. Shockingly, my recollection of both games are hazy. I think the Cubs won, though.

Other games, other stadiums… The Phillies beat the Dodgers 10-3 at the Vet. I remember the Phananatic, I remember Mike Schmidt going 0-4, but I remember the way the whole crowd reacted when he flied out to the warning track in his final at bat… Petco Park in San Diego, the afternoon following a friend’s wedding. I think it was against the Mariners. I remember Hell’s Bells and Trevor Hoffman closing out the win… And the Cardinals just last year. I remember the looks on my kids faces. I hope to see them again this weekend.

Rebranding, Housekeeping, and What Have You

I’ve had this blog for five years. I’ve done very little with it. A few amusing (I hope) personal anecdotes. Some other personal stories, remembrances of Ben. And then nothing. I haven’t added anything in going on two years.

So what’s this then? I don’t know. But I recently got away from Facebook and need some means of maintaining an online presence. Some outlet for things I want to share. My Facebook profile still exists; I just won’t be updating it henceforth. Some part of my reasoning for this is no longer wanting to have my information farmed and used without my explicit knowledge. Zuckerberg won’t be getting anything else out of me that he can share with Godknowswho. But still, I don’t want to delete it. Everything I put there is *me*, for better or worse.

A lot of what I put on that Facebook page alienated a lot of people, I’m sure. Friends don’t talk politics or religion. Well, I talked politics. A lot. Often with no small amount of anger. I’m sure I’ve offended and/or alienated my of my Facebook contacts. Friends and family. I offer no regrets for that. A lot of what’s going on in the world should make people angry. A lot of that stuff will start appearing here instead.

I have a lot of writing that I never put on Facebook or anywhere, for various reasons. Some of it I deemed too personal, or that it just didn’t fit this particular venue or that one. Some fiction, some non-fiction. Some opinion. Some vitriol. More of that will begin appearing here, along with (hopefully) new stuff as events unfold. My intent, and we’ll see how long I keep at it, is to better curate this site, beginning with this rebranding exercise.

The original title to this blog was “I Should’ve Been a Musician”. At the time, I thought it was kind of cheeky, and my very first post attempted to explain what I was going for with that title. But it’s also kind of negative. Almost 47 is too old to worry about the things you aren’t. Life’s too short to dwell on should’ves.

My name is Scott. Friends call me Moo.

Representation

A little thought exercise regarding representative democracy:

The lower chamber of France’s Parliament, the National Assembly, has 577 seats, which are elected directly by the people. The population of France is approximately 66.7 million.

The House of Commons, the lower chamber of Parliament in the United Kingdom, holds 650 Seats. Population in the U.K. is 65.1 million.

In Germany, the lower, directly elected chamber of the legislative branch, the Bundestag, holds 630 seats. Germany’s population is 82.2 million.

And in the United States of America, the world’s leading democracy, the House of Representatives holds 435 seats to serve a population of 324.7 million.

To put it bluntly, our level of representation in Washington stinks.

The number of seats in the House of Representatives was adjusted on a regular basis throughout the 19th century as new states joined the Union and the population grew. However, the number was last adjusted following the Census of 1910, when the nation’s population was tallied at 92.2 million people. It has more than tripled in the century since.

The only requirements set in the Constitution regarding the number of seats in the House is that the number of Representatives shall not exceed one for every 30,000 citizens. How quaint. We’re currently at about one for every 750,000.

And we wonder why our representatives do a poor job of representing us?

It would be nice if the Founders had, along with the minimum requirement of 30,000 citizens per Representative, possessed the foresight to include a maximum number as well. 300,000 would be a reasonable figure, in my opinion.

At current estimates, that ratio would give us a Lower Chamber with nearly 1,100 seats. California alone would have in excess of 130 seats. Would such a number of Representatives be unwieldy? Perhaps. Together with the Senate, this would give us a Congressional membership of 1,200. Which seems excessive only until one considers the United Kingdom, with its population roughly one-fifth the size of our own, somehow manages with a Parliament (House of Lords plus House of Commons) exceeding 1,400 seats.

Clearly, something is amiss in our government. Congress regularly has an approval rating below 20 percent, yet incumbent candidates win re-election more than 80 percent of the time. People everywhere feel they have no voice. Congressional seats have become de facto lifetime appointments in far too many districts as a result of pervasive gerrymandering (hey, Pennsylvania, have fun trying to carve out those perennially safe seats you’re so fond of when you have 43 Congressional Districts instead of 18 — Texas and North Carolina, to name two other notorious offenders, would have 84 and 32 districts respectively).

Carrying this idea to its logical conclusion, we can look at the Electoral College. Applying the results of the 2010 Census with the minimum standard of one district per 300,000 population, and maintaining the Senate at its current number, we arrive at an Electoral College of 1,154. This includes three Electors for the District of Columbia, which would actually have five votes if the 300,000 standard were applied. But until the District is granted actual representation in Congress, it will retain the minimum number of Electors.

Interestingly, and surprisingly to me, this new apportionment would not change the results of our most recent Presidential election. Donald Trump, on the strength of winning seven of the 10 most populous states (Texas, Florida, Pennsylvania, Ohio, Georgia, North Carolina, and Michigan, losing only California, New York, and Illinois), would emerge with 649 Electoral votes, compared to 505 for Hillary Clinton.

I’m under no illusions that this idea will ever come to pass. Our Representatives seem rather fond of things as they are, and why shouldn’t they be? For the vast majority of them, their jobs are safe. Re-election is nearly a given for as long as they wish to keep running. They have outstanding health care benefits, and a generous pension.

But for the rest of us, I tend to think more representation would be a good thing.