February 6, 2011

Grace L Summerville is a character of mine that no one has read about for a variety of reasons. On my way to work, in the middle of the day when I'm talking to people I wish didn't exist I think about people I've created. Most of them have a base in real life however Grace was a gift in that she came to me on her own. A nice mixture of her father and mother, Grace; born early, born strong, grows up to be an attractive young woman but because she is shy she comes off as cold. Both of her parents were shy as children, Grace was a name they agreed on although they debated about what her middle name should be until the day she was born.

Today I was lying in bed thinking about the rest of my day. I felt like crap, having organisms in my body that I have no idea how to control takes me to a new level of exhaustion that I can't really explain. Imagine being more tired than you have ever been, to the point where you might fall asleep against your will only you aren't sick in a way that people can see. At some point in time my youngest daughter came into my room wearing some clothes my sister sent. I never think of my children as beautiful even though they are lovely to me. I love them because I am their mother, not because they are particularly good looking.

When my daughter leaned over her hair swung forward, the ends were still damp, slightly curled from a recent shower. Her eyes are an unusual color, they change depending on what she is wearing next to her face and for a brief moment I almost did not recognize the child I gave birth to. Tonight we were at my mother's house, my sister has a new baby, both of my nieces were there, of my mother's grandchildren only my oldest daughter was absent. When we were shopping for snowpants, she needs a new ski helmet so she had that on and she tried on a jacket that matched her snowpants, she isn't the athlete her little sister is but the outfit was her, she was adorable and I told her so.

My oldest daughter is a bright girl. Her teacher told us that after we heard that she doesn't hand her homework in on time. When I was her age I was afraid not to do my homework. My aunt married a math teacher, she's in her fifties and it was bittersweet to hear how she put her head in her desk and cried before second grade math class. My oldest can do the work but she is easily distracted and bored by the repititon. Fourth grade prepares children for fifth grade, tonight my brother told my daughter that he hated homework, it was a life assignment and I worry about him more than I worry about the rest of us girls who missed out on his charisma because he has the talents and is unsure how to properly channel them.

We left the store without snowpants for next year, they are on sale now however I can't reward my daughter if she still hasn't turned in an assignment that was due Friday. Today I left my wallet in the car when we went inside although there were several things I wanted to get. Tomorrow we had planned on going skiing, my family enjoys it, I love being outside with them and my youngest daughter is a natural. Speed is the most important thing to my oldest, my youngest takes her time going back and forth, making the experience last for as long as she can. Grace Summerville has a little sister who likes to ski and snowboard. Her name is Liesl, she's very outgoing but she has her own special set of challenges.

Maybe I can't write about my children the way I would like to, unconsciously, I create people who can help me resolve conflicts I am going through because raising children is difficult and writing about them more so. Watching my children grow is one of the hardest things I have to deal with which is why I almost never write about it. Before we left for my mother's we made four different kinds of soup, the girls played outside while I did some of the dishes. Tonight we came home and my oldest daughter hung out with me in the kitchen while my youngest brushed her teeth. I worry about my girls and the types of relationships they will have with members of the opposite sex. I can see their personalities bringing them each different types of problems. I want to shield them from hurt knowing that they will only learn from their own mistakes.

A long time ago something happened. I would rather not get into the specifics which probably makes it seem like a larger issue than it really was. Today I would like to think that progress has been made on that front. Tomorrow is the big game, we are probably one of the few Wisconsin families not interested in the outcome. While I want Green Bay to win I think that people put too much emphasis on sporting events. They could retort that I place emphasis on things they don't care about which is their point of view and therefore valid to them. There are so many things I wish I could write about, maybe some day I will be able to write without restrictions, then I can stop worrying about what another person might be thinking and start the long slow healing process. Until next time, farewell.

It has been a really rough couple of weeks. I had the PET scan about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.

However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.

The physical reaction was pretty awful. The bisphosphonate (Zeloda), I was told, can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had. I'm still taking painkillers.

Still, I could handle the physical stuff, I think if it weren't for the emotional hit. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping this cancer wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones mets are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself. I would prefer not to take narcotics all the time, like I have been the last two weeks.

But I'm in despair. Our daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. Terrified. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.

I don't fear death, particularly. I can see how people with cancer eventually stop getting treatment, and go into hospice care. As my body again turns into a ragbag yet again, it's easy to imagine stepping out of it, whatever lies on the other side.

I fear a cage. Being stuck in a body that I can no longer move, or communicate from. And I fear the repercussions on my family. I don't think I know anyone who lost a parent or a spouse with a child in their teens, but I imagine it, for Tess and Kevin. And it feels dreadful.

Nobody loves chronic. There's nothing I can do, or anyone can do, about this, except witness it. Friends ask what they can do to help. Bring us food, do a dish, fold laundry. But first of all, listen to us. Take Kevin out for a beer, and let him talk about how awful it is. Ask me what it's really like, and get out the box of tissues. And recognize that a month from now, when you ask again, it may not have changed, and that the half hour feels like a repetition to you. It probably is. But it's what we are enduring, and the unchangingness of it is one of the challenges.

And alas, now I'm learning the difference between chronic and incurable. Chronic is something that affects you permanently, but incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you. Sooner, probably, than you would like.

I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.

Fooey.

Love,
grundoon