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

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

The ordinary

Woke up this morning and packed a lunch for my 6th grader.
I remember a time when I packed 7 lunches every morning. Seven sandwiches (some peanut butter and jelly, one just jelly, one ham - no cheese, one ham and cheese) all cut into triangles. Seven bags of pretzels. Seven bags of carrots. Seven pieces of string cheese. Seven little notes written with love and tucked behind the napkins.
Every single morning. It was exhausting and I dreaded it.
All my kids are big now. Four in college. Two in high school (they pack their own lunch - if they pack one at all). And one in middle school, 6th grade. I wanted to go have lunch with her at school today.

"Hey! (trying to sound like this will be the funnest thing ever) How about I pick up Chick-fil-A and come have lunch with you today?"
"Uh, no."
"I don't have to stay and eat with you. How about I just drop it off (figuring I'd end up staying anyway)?"
"MOM. NO. I don't want you to."

Ouch. That one stung.
She's getting bigger. She's growing up. It's a good thing. I know this. I just don't like it.
Especially today.
Tomorrow I go to Richmond to be admitted for a life-saving bone marrow transplant. I'll be in the hospital for a month or so. Then I'll need to live "within 30 minutes of the hospital" (their rule, not mine) for 2-4 months, depending on how well I'm doing. It will be months before I will get to bring my daughter lunch at school. Months before I will get to pack her a lunch.
So, when I packed her lunch this morning, I didn't dread it. I cherished it.
Such a simple little thing, an ordinary, everyday thing. Packing a lunch. But it meant the world to me today.
The ordinary is what I will miss the most.