Sunday, January 10, 2016

The Last Month of Chemo

I haven't been blogging much because I'm trying to write a book. A fiction about a shy librarian who is fighting battles in a time and world far, FAR, far away from cancer. It's been such a relief to have an escape for my brain on nights when I am tempted to remember too much. I just run and hide in my own little controlled world and that seems to work really well for me right now. I hope to publish and then make money from it. Win-win.

We're at the hospital today for clinic but Grace also has the stomach flu. She's not having much fun. 

Our friend, who has the same cancer as Grace (1 in 1 million kids have PH+ALL), isn't doing well. JoJo is here at CHLA as I speak getting inhumane amounts of chemotherapy. She's fighting for her life. We're delivering a gift to her from the BumbleBee Foundation. We were supposed to bring balloons for a girl named Natalia too, but sadly she died yesterday morning.

It would be possible to "move forward" if we were to cut all ties with our friends still in the cancer world but I'm not willing to lose some of the most true friends we've ever made. But every time one of them takes a punch, I feel my subconscious bruise. I bruise for the pain that child suffers, But I also know that as long as even a single kid fights cancer on this Earth, then cancer is still a reality that threatens my daughter.

For a while I was trying to plan how I could cure all childhood cancer. Really, I did. I didn't have any ideas how but that crazy feeling gave me crazy energy that resulted in many volunteer opportunities... but none that rid the world of cancer. Also it made me crazy. Really, really crazy.

The other day as I was walking in from the mailbox I burst into tears in our front yard. I suddenly remembered the photo of Grace hugging her brother and cousin goodbye that first week when she was diagnosed. I didn't know if that would be the last time they ever saw each other. I had that photo on my phone screen for two years and this was the first time I realized that's what that photo meant to me. So I stood there and cried for a while.

I've been trying really, really, really hard to let myself cry more. I found that I don't like to cry because I don't want to acknowledge the realities around me but also because I feel if I cry then I might never stop. Feeling sad and angry make me feel out of control.

When life is a mess then the only thing I have left to control is my emotions. But that's not the same as trusting God. I've been asking him to lead me into the unsafe place of feeling sadness and anger, to guide me through it, and to guide me back out again to a place where I can experience healing. And he has. And I feel more human as a result. And less crazy.

I'm glad I'm less crazy because life is about to get hard. Really awesome and also hard. Grace will (God willing) be done with her chemotherapy this month. Today we will confirm that with her doctor and then on January 21 she will end all cancer treatment exactly two years after she began. 

That is so exciting. Exciting for all obvious reasons. Hard because we looked forward to this day for two years during our worst moments and now, in our celebrating, we are reliving all those hopes and fears, dreams and pain. For me they are intertwined too deeply to untangle. All the feelings are there, stored up for one day.

Still the joy outweighs the pain, there's no questioning that. I am so excited for the 21. It will be the day I no longer give my daughter life-saving-poison with apple juice to wash it down with. Praise God.

 We'll keep you posted about the awesome celebrations and parties that you'll all be invited to soon.

1 comment:

  1. My heart is with you. I understand every word you have written. Our 8 months fighting AML on the 4th floor, had us witness such beauty and heartache. Since most of that 8 months was done in patient, we came to live and lose too many of our precious friends. Their moms, my dearest friends. Fighting for our children's lives, and unfairly so, watching them fight so hard. I left pieces of my heart on that floor. Unable to reconcile any of it this side Heaven. And the end of chemo, well, do you know, I think in my panic at the thought of not having the liquid gold/the toxic juice, I once asked if we couldn't do it just a little longer. That's the fear speaking. Not the faith and the hope. And today I send you much love and peace and prayers of hope as this next chapter begins.