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.

05 February 2016

Day 82

I am 82 days post my bone marrow transplant. 
I'm still considered in the "dangerous" phase and will continue to be until I get to day 100. I have restrictions on what I can eat (nothing fresh, only processed foods), where I can eat (not out at a restaurant, meals must be prepared at home and by my caregiver), where I can go (not where there are lots of people and I have to wear a mask when I go out in public and I restrict visitors).
Day 100 is the big benchmark my team of doctors talk about the most.  Patients who make it to Day 100 without relapsing have a much better life expectancy than patients who relapse. 
What's my status? So far, so good. 
I'm officially in remission.
There is no evidence of leukemia in my bone marrow or in my blood. 
Yeah, I'm gonna write that again.
There is no evidence of leukemia in my bone marrow or in my blood.
It's hard to believe. I've fought so hard and struggled through so much in the 2 years since being diagnosed with chronic myelogenous leukemia. Especially since August, when the Super Dangerous but Absolutely Necessary chemotherapy pills I had been on began to fail. We switched to another pill, failed. Tried another, failed. 
A bone marrow transplant in November saved my life. 
The recovery has been tough and long. But oh, so worth being cancer free.

01 December 2015

Next goal ... Discharge

Engraftment is a huge party in my bones.
Next goal is discharge.
Today I'm at Day +13.  If all goes according to plan and there are NO setbacks. ...
I will get to be discharged THURSDAY. Like they day after tomorrow Thursday.
As my awesome Pastor Stu Hodges at my amazing church Waters Edge Church  says, Holy, WOW.
Lots to do.
I need to wean off the IV medication and back to the pills.
I need to increase my diet - and keep it down.
I need to walk 4 times a day.
Please pray STRENGTH over me that I don't mess up in 2 days all that God has done in 3 weeks so far.

Oh, yeah, kept finding little tiny hairs all over my pillow. I'm officially bald. And it's fine.
Here's me ...  and, yes, I'm smiling under there. XOXO