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.

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