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

13 July 2016

This is what love looks like

I arrived for my weekly appointment at the Bone Marrow Transplant Clinic in Richmond and signed in as I do every week. Then the nurse handed me this envelope.




I froze. It actually took me a few seconds (that felt like minutes) before I actually took the envelope. I went to sit down and wait to be called back for clinic.
Every week I go to the BMT Clinic. They access the sexy port in my chest (I'll spare you a picture), take anywhere from 4 to 34 tubes/bottles of blood and take my vitals. Then I either see one of the four transplant doctors or one of the nurse practitioners. Oh, and I get "repletions" (hate that word) if needed. Magnesium, platelets, blood, etc.
So I'm waiting to be called back for clinic and I can't seem to bring myself to open the letter. I held it. Turned it over and over. Excitement and amazement and guilt and rolling around.
Yes, guilt.
I should have written a letter to my donor before he wrote to me. I should have written a letter to him back in November when I received his amazing, selfless gift that saved my life.
Here's what I know about him.
He's a "young" man from Germany with the same blood type as me. That's it. That's all I get until the records are unsealed. I think it's 3 years for international donors? Be the Match has lots of information on what kind of contact donors can have with recipients.
After what felt like ages, I opened the letter.

Obviously, it's been roughly translated from his German language. But his heart translates beautifully. 
I treasure this. 
YES I could celebrate Christmas with my family.
YES strength has gotten me to this point so far.
YES it has gone well.
Oh, wow. Just wow. 
What he gave me is another chance at life. A whole new life. 
Now, what am I going to do with it?



*I did write him back. I just can't share it.