Tuesday, November 27, 2012

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.


Saturday, November 17, 2012

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.


Saturday, November 10, 2012

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 theirs 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.