26 June 2018

A Love letter ❤️

My dearest Otto,
I know that’s not your real name, but I’ve become so accustomed to calling you Otto, I think it’s stuck.
My tests results are back and they are perfect!
  • My blood is 100% yours
  • My immune system is 100% yours
  • There is no evidence of disease (NED) anywhere in my bone marrow or labs.
I hesitate to say that we may just have beaten this damn cancer.  It’s been 2.8 years since my bone marrow transplant. The transplant team says if the cancer is going to come back, it usually comes back in the first 5 years. We haven’t had any big setbacks yet. I’m trying to be careful and nurture and appreciate your precious gift of golden cells. 
That’s what they look like when they are infused - a little bag of gold. 
I want to thank you for your precious gift that saved my life. 
  • My husband, the Caregiver, we’ve been married 16 years now. That’s thanks to you. 
  • Our 7 children were terrified, 6 of whom already lost a parent to cancer, this horrible, awful disease. (We we’re each married before.)  The thought I wouldn’t survive scared them so much. But I am alive, and thriving, thanks to you.
  • My friends have been such an amazing support during my cancer fight. Stepping up to be Mom and Caregiver when needed. And it was needed a lot! And it’s seeming like I’ve won. That’s thanks to you.
  • 3 of my daughters have graduated from college and are in the real world, making life work on their own. I thought I wouldn’t get to see that, but I did! That’s thanks to you. 
  • Our youngest daughter has special needs, learning difficulties. She needs extra care. I get to help her. That’s thanks to you.
Sweet Otto, I could go on and on. But I know you will need to translate this to German. I just need you to know how special you are in my heart, in my husbands’ heart, in my kids’ heart. We consider you a member of our family - your blood pumps through my veins. 

Ich danke dir sear
Ich liebe dich
Patti

12 June 2018

Out of control

It's finally happened.
The moment of parenting we've been working toward since day one.
Six of our 7 children are now living on their own. As in, not home with me. Not right down the hall. I feel like I am un-tethered.
Out of control. 
That I can't keep all my plates spinning, up in the air.  
Like I've got no purpose. 
That I'm wandering ... Aimlessly. And no one would notice if I teetered off the edge.  

I don't know why I feel that no one would notice. Based on all the comments and notes and prayers, lots of people would notice.

I feel loved.
But isolated.

Time is moving slowly. Not being marked by any significant event. 
I have a paltry "to do" list littered with insignificant items, at best, because The Caregiver and my doctors don't want me to push too hard and relapse. That could land me in bed for days.
Sitting still is hard.

Exodus 14:14 says to "Be Still."

Easier said than done.

03 June 2018

My 2.5 year Day of Testing

I had a bone marrow transplant 2.5 years ago. November of 2015.
That's a long time ago.
I went to my 2.5 checkup and my "Day of Testing" last week. I have to wait 2 more weeks before I get the results.

My "Day of Testing" included:
- a bone marrow biopsy (hurt like hell)
- a chest CT
- a pulmonary function test (so hard makes me cry)
- blood gas draw (that hurts)
- blood draw of 25 tubes (awesome)
- and, of course, vitals

What will all this tell me? I won't know for 2 weeks. The doctor will probably tell me that my results are all fine and still show as "No Evidence of Disease." NED. He's been my friend so far.

The problem is I'm on pins and needles waiting for my results. This is the longest 2 weeks EVER.
I know God's in control. I know he's got this. He hasn't let me down yet.
Lamentations 3:25-26  The Lord is good to those whose hope is in him,  to the one who seeks him; it is good to wait quietly for the salvation of the Lord

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