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.


7 comments:

Sharon said...

Oh April. My heart just sank when I read this post. I'm so sorry that you are going through this....again. I'm here for you, dear April. I'm here. I wish I could be of more help, but if you ever want to talk, I'm here. I'm lifting all of my prayers for you. You can beat the KGB again. I just know it. {{hugs}}

Marcia said...

April, my heart aches for you. Throughout your own trials, you have still shared your love and concern for others in your community, and those people will be standing side by-side with you, as will many you've never met who read your posts. I hope that thoughts of your granddaughter will help you get through the rough times you must endure. Sending hope and much love! Stay strong!

see you there! said...

So sorry to hear this news. Your strong spirit shines through this post and it is amazing. Please know you will be in my thoughts.

Darla

Jackie said...

April, I also sense your strong spirit coming through in this post. Please know that you are in my prayers. You are such a giving person, I suspect much support will be given back to you by those in your community.

Hugs,
Jackie

Anonymous said...

You have friends whom you don't even know about and we are pulling for you now.

Ellen said...

April, I just saw this post. I am so sorry I've missed it until now! I know you will move into this phase with grace and humor, but at this moment, there are tears on my cheeks, and I wish they could wash all this away from you. Apparently, I need to get your phone number, because an email and facebook do not do this occasion justice! my only recourse is to step into my kitchen and bake for you, so be watching your mailbox! Yes, we'll all be marching along with you in these next days, weeks, and months. Please don't hesitate to reach out!

Jenny Woolf said...

April, I am so sorry to read this post. I haven't been checking much on blogs lately (and when I do I don't always comment) But I had hoped not to see this. I am thankful that the medical technology exists to help you fight this thing. And have the party, it is a good thing to do that.