26 May 2017

My friend Ned

In the world of cancer, oncologists throw around big, scary, strange, new words. 
Words like: chemotherapy, malignant, WBC, RBC, platelets, blast, stage, benign, metastasis, ned, margin, bcr/abl.
I could continue, but you get my point. It's almost an entire new language. 

I was diagnosed with leukemia in 2013. I came close to death in 2015. But thanks to God and a wonderful, generous, anonymous German man we affectionately call "Otto," a bone marrow transplant in November of 2015 saved my life. 
It's now 2017 and I'm STILL recovering. Turns out it takes a   L O N G  time to recover from transplant. I wasn't expecting that. I'm ready to jump back into my pre-cancer normal. Yeah, my doctors laugh at me and tell me it takes years to recover. Years. 
But I'm coming to terms with that. 
My visits to the transplant clinic get farther and farther apart. I go every 3 months now. I used to go every day. Every week. Every month. So every 3 months feels kinda reckless. 
But as long as I'm doing well (I am), as long as my labs are good (they are), and as long as there are no big problems (there aren't) the docs say I don't have to make the trek to clinic for 3 months. 

I've also gained a new friend. Some cancer patients aren't lucky enough to meet him. Some get to meet him but he doesn't hang around very long. Sometimes he comes and goes. 
His name is Ned.
He's not "real" - his name stands for No Evidence of Disease. And when those words show up on a report its glorious. 
Patients ask each other, "Have you met Ned yet?" 
Or there might be a tearful reply, "Ned has left and the doctors don't know if he'll come back."
Or, "Ned's here! Ned's here!"
He's the kind of friend you'd do anything (and practically do) to keep around. 

Every 3 months I get an excruciatingly painful bone marrow biopsy. But I don't mind because the biopsy is checking for Ned. 
We are celebrating because last weeks' biopsy shows that Ned is still with me. For 6 months now there's No Evidence of Disease. 
No Evidence of Disease!
No leukemia in my blood. No leukemia in my DNA. None. Not a speck. 
Thank you, Lord, for Ned. 
You know the feeling when you collapse into the arms of your mom or your husband or your best friend and you just know everything's going to be ok? That's what it feels like when Ned is here. 

But we aren't finished yet. The doctors tell me it's ok to be excited but don't exhale quite yet. Ned can disappear, without warning, within the first 5 years after transplant. 

My faith lies in this,
“I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”
Philippians 3:14 NIV

4 comments:

  1. Thanks be to God! Hoping Ned is a permanent resident... #whataguy

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  2. Oh Patti, we love that NED is a visitor. We hope he comes often. Your description of how you feel when told that NED is there is perfect. Absolutely on target!! Between the Thank-you Gods and smiles, it's a gift like no other as you well know. Live as large and as gratefully as possible is my only suggestion. And know that the Big Guy and I rejoice and give thanks with and for you. ✝️�� Lena

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    Replies
    1. Lena, y'all are so sweet. Thank you. I pray you are doing well and Ned has been a permanent guest. ❤️

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