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.

Four years

I don’t often get to pick up any of my kids at the end of the day.

Carolyn and I have worked out our schedule: she works early, from 7 to 3, and I do the more traditional 8:30 to 5. I drop the kids off in the morning; she picks them up in the afternoon. It’s pretty unremarkable.

Since Josh and Lia began going to daycare in February, I have picked them up in the afternoon exactly twice. Both times, Josh has greeted my arrival with his biggest smile, abandoned whatever activity he was in the midst of, and come running full-bore into me. He does not slow down those last three feet to lessen the impact. He meets me at top speed, with a full-body tackle/hug and laughter. It’s intoxicating.

April and Vilma, the teachers in Josh and Lia’s room, find his response to my arrival endlessly charming. “Awwww, there’s Daddy’s boy,” they say.

Carolyn and I are largely in agreement that Josh is, in fact, something of a Momma’s boy. But in that moment, or others like it, he feels like Daddy’s.

Josh

Today is the culmination of a week in which I spent much time thinking about my other boy.

Ben is never too far from my thoughts. But every year, the approach to May 10th, the approach to Mother’s Day, keeps him even more in the forefront. When Josh ran up to greet me at school Tuesday, I wrapped him up in my arms and said “how’s my boy?” and a voice in my head sternly reminded me, “you have two boys, you know.” And I felt guilty for enjoying that moment so much.

When Josh and Lia are playing so well together, or when Nora is telling us how much she loves Lia, I feel loss. Loss for Nora not having her twin. Loss for Josh not having his big brother.

When a quiet moment consumes either Carolyn or me without warning, I get angry. Angry at a situation that neither of us will ever have any control over, at a situation that both of us will have to confront for the rest of our lives.

It’s been four years since that morning, when Carolyn’s cell phone woke us up at 1:50 in the morning. Four years since I ran a few red lights on my way to the hospital. Four years since Dr. Paget-Brown sat next to us and told us to hold our son. 3:00 in the morning on Mother’s Day.

Ben

So much happens in four years. Olympics, Presidential Elections, leap years. But in four years, the only thing that has changed about May 10 is the day of the week it falls on. In two years, it will fall on a Sunday again and coincide with Mother’s Day. I have no idea whether that will make the pain of the anniversary more acute, or if it will be easier to simply pack it all into one day instead of an entire week. It will also fall on a Sunday in 2020, 2026, 2037, 2043, 2048, and 2054. I don’t anticipate still being around when it falls on a Sunday in 2065, but who knows?

Four years. 1,461 days that I’ve gotten to wonder what he’d be like today. 1,461 times I’ve gone to bed and said a quick prayer for my boy. 1,461 nights since the last time I sat in NICU Pod B and read him a story, 1,461 nights since I leaned in close to his isolette and sang in a soft whisper for him.

I will frequently sing the same song to Josh at his bedtime. Nora has a song of her own, Lia has one too. But Josh shares a song with Ben. At first, I thought Josh should have his own song too. But now I prefer it this way. It’s something Ben gave to Josh. Or maybe it’s something he gave to me, and I’m just sharing it with Josh. From one boy to another.

Home

I started last night to write a post about Nora’s birthday party on Saturday. But there are other things on mind at the moment. One thing, actually.

I was not born in Boston. I was not raised there. But for 10-plus years, Boston and its inner suburbs was home, and they were the best years of my life. I met too many friends, I had too many great experiences, for it to be otherwise. Above all, I met my wife there. This life I have in 2013 — this family, these children, all of it — is a direct result of my decision in the spring of 1998 to pack up everything I owned into a Penske van, hook my car up to the back, and make the trek from idyllic little Lemoyne, PA to Boston.

I was not unfamiliar with the city on my arrival. For just about every summer of my childhood, elementary school on up, summer included a trip to Boston. The genesis of these trips was always the Red Sox. Dad’s life as a sports fan begins and ends with those Sox. He was bit by the bug in the pennant-winning summer of 1946, and his sons stood no chance but to be bitten by that same bug. With so many annual trips under my belt, it seemed only natural in early 1998, as I was applying for admission to graduate school, that my eyes turned to Boston University, which offered a strong program in broadcasting. My admission being secured that spring, the next decision was an easy one, and in late August, I was off.

I was fortunate in two ways when I moved to Boston. First, while I was moving to an entirely new city, I was at least moving to a city where I had friends. Pat, Pete, and Pat, acquaintances from my days with Proteen Records* lived in Boston, and through them I was able to join a group of extended friends that I eventually came to regard as some of the best I’ve ever known. Secondly, as an incoming member of a new class of students, I was instantly immersed with a collection of friends who were as new to the city as I was. It was the best of both worlds, and very necessary to my well-being, as it became quickly apparent that my many previous visits to Boston left me with approximately zero understanding of the city beyond its many tourist attractions.

(*Proteen Records and its history will have to wait for another post.)

I’m not going to even attempt to wrap up 10 years and four months of my life in a blog post. I know this is going to wind up a bit of a disjointed mess when I click publish. But today’s tragedy leaves me feeling ill. I’m not even sure what I’m hoping to accomplish by writing about it, or about Boston. There’s no point in trying to make sense of it all when there is no sense to be made. Whether this turns out to be an act of international terrorism, or domestic terrorism, or the work of a singular and severely fucked up human being will alter nothing from where I sit.

To put it simply, I love that city. I love its people, its  little neighborhoods, its maze of one-way streets, the anarchy of its grid, the dilapidated nature of its mass transit system, its fundamentally quirky mix of Puritan aesthetics (no booze on Sundays!) and liberal progressive ideology. As I type, Carolyn reminds me of the time we had lunch at Atlantic Fish Market, which is practically today’s Ground Zero.

As I type, no fewer than 134 people are in various stages of critical care. A two-year old boy is in ICU with head trauma. An eight-year old child is dead. As I type, families grieve.

Last August, on a visit back to Boston, Carolyn and I stood together on the beach at Winthrop, talking about the future. It was the end of a lovely week visiting all of our lovely friends, and one thing became startlingly clear to both of us. We felt like we were home.

Someday, I hope to call it home again.