17 March 2015

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.





5 comments:

  1. Yes, you can do it.

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  2. YES, YES and YES... YOU are strong, YOU can do this! YOU have so much life to LIVE! I believe that when things seem bad, it just means God is working in our lives and making the way for better things to come. I am so happy you and Mike were able to make this trip! You are both blessed to have so many who showed their love through their donations to make that trip happen. God is paving the way for better days ahead for you. Glory be to God as you keep your Faith and show the devil that you will not let him in and bring you worry or fear. I just love how God shows Himself to us, just when we need that reminder the most. Much love and happiness for you and Mike.

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  3. So very happy for you Patti, and all the news IS good news! You are strong and have a loving family for support, and you have your faith in God. He can guide you but you have to do the rest and I know you can.

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  4. God has always had a plan for you Patti! He knows your heart and is guiding your soul! "Search me, O God, and know my heart; test me and know my anxious thoughts." Psalm 139:23 (NLT) I will pray for you and pray over your doctors! And God's children will pray for you too!

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