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."

http://www.r-word.org

Y'all giggled a little and continued your conversation.
Bam.
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?

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

No mutation detected

A watched pot never boils. Think that's really true? It has to boil eventually. I guess watching it makes it seem like it's taking forever.
Forever is how long it felt while waiting for my mutation and resistance testing to come back. 

The refrigerated kit arrived March 17.

OOH, biohazard bag.

The vials lived in my fridge for a week.

The vials with my blood a week later.

My blood mixed with the magic solution.

My blood added to the magic solution.

Off it goes.

I found out yesterday - 2 weeks after my blood travelled to the west coast - that the lab results were back all the way from Oregon. But they wouldn't tell me the results because the doctor needed to go over them.
Talk about stress. That was a long 24 hours.
I got word this afternoon, just after lunch.
NO MUTATION DETECTED.
Sigh.
I feel the weight lifted off my chest. No mutation detected. Very, good news.
But what does it mean to my treatment? Why are my Super Dangerous but Absolutely Necessary chemotherapy pills not working? Not sure yet.
I will find out next week. I'm still waiting for a heart test, as well. 
No mutation detected. 
I feel I can exhale now. For 3 weeks I've been living with my "What if" brain.
What if there's more than 1 mutation.
What if my body can't take the new drug.
What if the new drug doesn't touch the mutation.
What if ...
I know my fight against CML is far from over. Having a resistance to my Super Dangerous but Absolutely Necessary medicine is not a good thing. I'm sure it means there will have to be changes. Changes in treatment. Which means changes in side effects (yuck).
No mutation detected.
Today, I'm celebrating this little victory. 
And I'll keep fighting.

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.Philippians 3:14

Update

Me and The Caregiver, arriving in New York.

Thanks to the generous hearts and pockets of many, The Caregiver and I were able to travel to New York City for an appointment with Dr. Michael Mauro.
He's a CML (chronic myelogenous leukemia) specialist. One of the best in the country. A Magic Man.
We wanted to talk about my quality of life.
I hate that phrase. Quality of life.
The fact that I am alive means I have a life that has quality.
I also have a body that is exhausted from pain that just won't go away. A brain that is puzzled because the latest BCR-ABL lab results are higher still.

Dr. Mauro wants me back below the red line.

Me and Dr. Mauro.

So we travel by train to see the doctor. We are convinced he can tell us why the CML is doing this and how to fix it.
What he tells us is that he suspects the Super Dangerous but Absolutely Necessary chemotherapy pills I take faithfully twice a day have stopped working. Either I have developed a resistance to the drug. Or I have developed a mutation and the drug doesn't work.
Not great news.
Not awful news.
Labs are drawn and tests are scheduled and in the span of 14 days or so we will know what exactly we are dealing with. Then my Magic Man doctor will pick the next drug depending on the results of the tests.
It was a good visit and we are both so, so glad we went. He wants to see me back in 3 months. And once we start the new drug will be monitoring me closely.
I'm have a laundry list of things to do. One is to set up an appointment with our local oncologist/hematologist and go over Dr. Mauro's plan and see if he's on board with it. 
I'm a little nervous. What if he doesn't agree with the plan? I don't think that's the case. But the question lingers in the back of my head.
As we were getting off the train when we returned home, I looked down and found a small, round pin. It has Rosie the Riveter on it and says "We Can Do It!" I picked it up and kept it. 
A little nudge from God. Letting me know He's got this. I don't have a thing to worry about. 

Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own.

Matthew 6:34

My nudge from God.