Sunday, June 14, 2009

Consent to Take Part

When I was in my first year of college at Colorado State University, my dorm roommate and I liked to sit in the courtyard by the cafeteria on our bean bags and study. Or actually sit in the sun and talk about gossipy things while holding our books and yellow highlighters.
At the end of that summer, near the closing of September, I lost one of the lenses to my glasses. Instead of telling my parents, I squinted my way through the next two semesters. I had lost or squashed too many pairs of glasses in the past, not to mention IDs and retainers, to admit to loosing something valuable my first semester away from home.
When the winter snow melted and the ground stared up at the sun again, we dragged our beanbags out to the courtyard. This was Spring, early March in Colorado, when the sun blazes down and everyone get out their shorts and frisbees.
I plopped down on my beanbag and put my hand down on the grass. I felt something hard and smooth and looked down to see my hand on top of my missing glasses lens. It had been sitting under the snow in the courtyard all winter.
I said a quick "holy crap" to my roommate and went up to my room and popped my lens into my glasses which I had stashed in a drawer next to my eyeliner. Just when I was beginning to think that I couldn't squint one day longer in my huge chemistry auditorium: Voila. My glasses. Good as new.

I have decided to take part in a clinical trial which starts tomorrow at my cancer center. My doctor and I feel it is a good decision at this point. The two chemo regimens I have tried have not stopped new tumors from developing. We have one more chemo we can save for "if all else fails." In the meantime, this clinical trial seems promising. And intelligent. And I think it might work better than chemo.

The trial involves immunotherapy, rather than chemotherapy. This means that rather than introducing an agent that kills every cell in sight, good and bad; an agent that occurs naturally in the body is used - in this case a monoclonal antibody Anti -Ox40- that can help boost the immune system and may shrink or slow the growth of cancer. The side effects are minimal and it does not leave you depleted of cells you need.

On Friday I had to sit in a chair for 3 hours while they took blood from my left arm and sorted out the platelets, red blood cells and white blood cells, and then put the platelets and red blood cells back into my right arm. The needles were silver and big. I could not move either arm for three hours. Kathy read me a book and held the computer so we could watch What's Eating Gilbert Grape (with johnny depp). We were in the Dialysis room and most people were older and staring at the TV with headphones on. It was quiet in there, with some beeping sounds from the moniters and such. One woman who had been looking at her TV for a long time suddenly shot up out of her chair and started to try to walk with all her tubes and needles attached to her. The nurses managed to settle her down in her chair pretty quickly.

Tomorrow is the day I am picturing that things will start to turn around for me. I am anticipating that the tumors, at least for a while, will stop growing and stop hurting. I am visualizing very clearly being able to run up the big hill at Clinton Park with Luka and roll all the way down.

These things do happen to me. I get to just the end of my rope, where there is no hope left and I'm just about ready to give up and I look down and there's something like my flippin glasses lens. And I can just pop it back in and voila. It's fixed.

Tomorrow I'll be saying that to myself a lot.

Voila. It's fixed.

You say it too.

Thursday, June 4, 2009

Butterflies and Thunderstorms

Here I am.
Today I woke up feeling pukey. I had been feeling really well lately and so Scott took advantage of the good feeling time to go off on a little adventure of his own to the coast. For a few days he will be at the beck and call of no one, which is a well deserved need. However, wouldn't you know it; I woke up and knew if I moved a muscle I would throw up. So I didn't. Move a muscle.

This worked for about 15 minutes until Luka said from her yellow horse bed in her room, "Mom, should we get up now?" And I had to think quickly about how I was going to get her lunch made and her hair brushed and her kindergarten body to school without moving a muscle. Does Mary Poppins have a cell phone? Does anyone know the number?

We decided to go to school a little late. Luka carried five of her dolls and three of their blankets over to my bed and we watched some cartoons and I didn't have to move. A muscle. She was excited about going to school a little late until she remembered it was her turn to do the lunch count and then she was very sad and upset. In a crying sort of way. With tears.

I knew we wouldn't make it in time for lunch count, but we got the ordeal settled by many reminders of lunch count tomorrow. And also chocolate milk tomorrow since it is Friday and that is a chocolate milk for Luka day. Lunch count and chocolate milk. Lunch count and chocolate milk. Move slowy out of the bed. Slowly.

I managed to make Luka's breakfast (waffles - in the toaster kind) and half of her lunch before I had to run to the bathroom.

Luka is very respectful of my time spent in the bathroom losing my food. She quiets down and usually finds a little project to do like drawing a picture. This might seem awfully sad and worrisome, but it's really not. She knows it is just part of things as they are now. But I did feel unusually awful today and so quickly laid back down after finishing Luka's lunch and making a few more trips to the bathroom. We decided to call first Michele, then Kathy, then Taylour to see who was home and who could take this kindergartener to school.

Kathy came in a super jiffy. I finished Luka's Around Braid and she was off. And I was off to bed again.

I woke up with a glass of electrolyte water still in my hand. Unspilled. Wierd. I was just in time to make it to Luka's class celebration for the end of their Insect Unit and the release of the butterflies that had started out as caterpillars in round mesh cages in the classroom.

There is something very beautiful about the little faces of kindergarteners. As I watched them watch the butterflies zip up and into the still air, I thought about how much they are little butterflies themselves. Luka has changed so much in one year, her school and home providing a safe cocoon. She is reading and jumproping and also has 2 missing front teeth. What a little butterfly.

Being the self self person I am, I can't help but wish I could be a big butterfly metaphor right now. That my treatment is my cocoon and I am blossom blossoming and the cancer is changing me into a more beautiful person. And maybe this is happening.

But right now I relate much more to the huge thunderstorm outside that is wreaking havoc, blowing patio chairs around, raining huge drops, crashing large pieces of cloud into thunder and setting off blinding blasts of lighting. That is me, the thunderstorm. And my little daughter is the butterfly. Sitting with her wings under a large leaf, waiting for it to be over.