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.


  1. Your Dad and I have always said "whatever comes in Julie's way, she always muddles through it". Somehow or another you are able to find things, fix things, and make things right no matter the circumstances... this is painful, exhausting, and so unfair... but I know in my heart that you will "muddle through it". You have amazing powers. I love you. Mom

  2. i will be saying it too. You will be starting the Portland Documentary Magazine as well. What's Eating Gilbert Grape is so good. i love that movie.

  3. I will be thinking of you tomorrow and saying it too.
    Praying for nothing but good things to come your way,

  4. Our new mantra for you will be:
    It's fixed!
    It's fixed!
    It's fixed!
    We believe in you Julie and we know your strength and determination to fix things will prevail! You are always in our thoughts and prayers.
    Love, Sandy and Hayes

  5. I love that story. Sorry I forgot the legos.

  6. I'll be saying it! Good as new, all fixed.

  7. ItS all fixed It's all fixed It's all fixed It's all fixed it's all fixed It's all fixed It's all fixed It's all fixed It's all fixed it's all fixed it's all fixed It's all fixed it's all fixed it's all fixed it's all fixed it's all fixed it's all fixed it's all fixed .....
    I pray, call in the universe, God, Buddha, your grandma Angie and all those in higher plains to join in the chant ... it's all fixed it's all fixed it's all fixed
    I love you, Julie

  8. Please. Just let it all be fixed. I love you and I miss you and Niko wants to meet you. So please let it all be fixed.

  9. weep,weep, a good way! I am chanting "Voila" way beyond the Universe, Beyond Infinity and Back into you!

    Sorry I am late getting back into reading your blog...Summer hit fast and furious!

    I couldn't roll down a hill with Willow even if I wanted too, I would keep spinning for hours afterward and be a dreadful shade of green. HA! I'm really not kidding though.

    I wish you 1000's of rolls down the hill with Luka when you are feeling better soon!

    fyi, I put your name in the Prayer Box at have so many people praying for you!

    xo, Melissa