13 June 2015

Dear dad on the swim team

Dear dad on my daughter's swim team,
I don't know what your name is as we have never met. I think we have smiled and said "Hey" to each other at the pool in passing a few times. I don't know how many kids you have on the swim team. And I don't know which kids are yours or what your wife looks like. I just know that my daughter is on the swim team with your kids and we belong to the same pool.
I was sitting with two of my teenage daughters during practice last week and then you walked by. There was a row of us moms sitting in lounge chairs watching swim practice at the end of one of the last days of the school year. It was hot. It was sticky.
One of the other moms stopped you and y'all were chatting. I don't know what y'all were talking about - I wasn't "listening," but could hear bits and pieces. I did hear you say you are, or were, a teacher. I was watching my daughter swim.
Then I heard you say something loud and clear.
"That's so RETARDED. There's no other word to describe it."
Y'all giggled a little and continued your conversation.
I felt like I had been punched in the stomach. I should have gotten up and said something right then. It was as if I was frozen in place and couldn't move. I was so shocked that an adult, and an educator, would use such a word to describe something or someone.
You see, that beautiful 12-year-old girl swimming over in the pool - my daughter - is intellectually disabled. She just finished 5th grade, but struggles to read, struggles to write. She's really only about 5 years old on the inside. But on the outside she is 12.
She is funny, she is giving, she is shy, she is a hard worker, she is loving and she is officially diagnosed as having mental retardation.
Only, doctors don't use that term any more. She's intellectually disabled. The term retarded has become so derogatory, so painful to hear that the entire medical community has stopped using it. There's a public service campaign, Spread the Word to End the Word, going on that's making great strides.
Every time I try to tell this story to a friend, I cry. I was crying the day you said it. I'm crying now as I write this. I wish I had said something to you that day.
I want you to know that what you said hurts.
I want you to know that what you say gets mimicked by your children.
Someone told me I should just let it go. That you probably meant no harm.
And I don't think you did. I think you simply didn't realize using that word would hurt someone. And I don't think you knew my daughter was intellectually disabled.
But it did hurt.
So I'm asking, please, consider using a different word?

08 June 2015

Time to show Tasigna the door

For the first time in 603 days I woke up and didn't take my Super Dangerous but Absolutely Necessary chemotherapy pills.
Feels reckless.
I take Tasigna, twice a day, every day, because I have Chronic Myelogenous Leukemia (or CML). And I will take oral chemotherapy pills for the rest of my, hopefully, long life. That's why I feel so reckless.
I got some labs back that are not so good. The level of BCR-ABL (the protein that enables the leukemia to grow) in my blood is rising. And over the last few months, has spiked.

The first number is at diagnosis. Below the Red Line is the goal. 
So, my local oncologist and my CML specialist in New York had a meeting of the minds and I will be transitioning to a new drug.
My oncologist actually gave me a "title," if you will. He said he's never had a patient fail on a drug as fast as I failed on Tasigna. Awesome.
Time to show Tasigna the door and switch drugs. It's a good thing. Tasigna isn't doing the job anymore. The side effects are no party, either. Awful bone pain. Nausea. Fatigue (hate that word - it doesn't do justice to the extreme exhaustion that is fatigue). Rash.
Possibly, I will feel better on this new Super Dangerous but Absolutely Necessary chemotherapy pill.
It's called Bosulif. Here's the tagline about the drug:
BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.
It has different side effects.  One being diarrhea. Headaches. Edema. Fun times. But not everyone experiences that. Maybe, maybe I will feel great on this drug.
I'm scheduled to start the Bosulif in a few days. The transition plan is to stop taking Tasigna and get it out of my system before I start the Bosulif.
But it sure feels like I'm being reckless.
At the end of my appointment, my oncologist looked me dead in the eyes and gave me the Gang of Four speech again,
Air. Water. Food. Bosulif.
That's it.
Am I afraid that I failed my first drug within the span of 2 years? Yes.
Am I afraid that this drug won't work? No. I think it will work and will work fast. I think I'll be back below the Red Line in no time.
I know God's got this under control. I just have to be still.
"Be still and know that I am God," Psalm 46:10