3 years since transplant

My birthday cake, baked by my 10-year-old niece.

In the bone marrow transplant world, the date of transplant is celebrated as a birthday. The day my body got an all new immune system from my amazing donor in Germany.
Yes, I know who he is. I get to email him. And write letters. And send pictures. It's wonderful to be able to send him updates and for him to see his generous donation in action.
I wish I could meet him. Wow, I wish I could meet him. I'd probably cry. But I know I'd give him a huge hug. 
One day I'll travel to Germany and visit My Otto. That's what we (my family and friends) called him before we knew who he was and what his name is. And now, he signs his emails Your Otto. I love it.
So, it's been 3 years since my transplant. There has been No Evidence of Disease (NED) since transplant. No complications. No issues at all.
I'm very lucky. Some of my friends who have had a bone marrow transplants haven't been so fortunate. One has died. One has had complications and now has an ostomy bag. 
Before my transplant I was given 3-6 months to live. It was July. I'd be dead before Christmas. Because of God's grace, my donor was found and my life was saved on November 18, 2015.
I feel like I've been given a second chance at life.
But it hasn't been an easy road. It's taken a while to get my strength back. I asked my doctor how long it would take to get back to "normal." He said, "it takes as long as it takes."
Ugh. Not what I wanted to hear.
But, 3 years later, I'm getting stronger. I'm working hard to get my strength back. Physical therapy. Rest. Knowing when enough is enough and not overdoing it.
I go back to the transplant clinic in a few weeks for another biopsy to check for leukemia. Am I worried about the results? You bet. I hate the biopsys. I hate the 2 weeks of waiting to get the results. 
The doctor said the leukemia could still come back. But when I hit the 5 year mark, I'm considered cured.
2 more birthdays to go. Then I can exhale. Then I can relax and not feel like leukemia is lurking just around the corner, at the next biopsy, just waiting to be discovered.
I wish I wouldn't worry about it and simply live my life - enjoy my life. But I'm always worried it's just around the corner.
God says not to worry. He's in control. He's got this. And, logically, I know this. I believe this.
Why can't I just let go and trust? 

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.

No mutation detected

A watched pot never boils. Think that's really true? It has to boil eventually. I guess watching it makes it seem like it's taking forever.
Forever is how long it felt while waiting for my mutation and resistance testing to come back. 

The refrigerated kit arrived March 17.

OOH, biohazard bag.

The vials lived in my fridge for a week.

The vials with my blood a week later.

My blood mixed with the magic solution.

My blood added to the magic solution.

Off it goes.

I found out yesterday - 2 weeks after my blood travelled to the west coast - that the lab results were back all the way from Oregon. But they wouldn't tell me the results because the doctor needed to go over them.
Talk about stress. That was a long 24 hours.
I got word this afternoon, just after lunch.
NO MUTATION DETECTED.
Sigh.
I feel the weight lifted off my chest. No mutation detected. Very, good news.
But what does it mean to my treatment? Why are my Super Dangerous but Absolutely Necessary chemotherapy pills not working? Not sure yet.
I will find out next week. I'm still waiting for a heart test, as well. 
No mutation detected. 
I feel I can exhale now. For 3 weeks I've been living with my "What if" brain.
What if there's more than 1 mutation.
What if my body can't take the new drug.
What if the new drug doesn't touch the mutation.
What if ...
I know my fight against CML is far from over. Having a resistance to my Super Dangerous but Absolutely Necessary medicine is not a good thing. I'm sure it means there will have to be changes. Changes in treatment. Which means changes in side effects (yuck).
No mutation detected.
Today, I'm celebrating this little victory. 
And I'll keep fighting.

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.Philippians 3:14

#selfie4Karen

One of the groups I belong to on Facebook is called Friends by choice ... CML sisters by blood.

It's a closed/secret group of "just women coming together to share their CML stories or to even just vent, encourage and let loose and connect with other ladies."

There are 509 of us in the group.

One of us entered heaven on Dec. 30. She had been fighting chronic myelogenous leukemia for 15 years. 

I never got the chance to meet Karen in person. All I knew of her was from what she posted on Facebook. And, quite often, she would pop in to the CML sisters group, post a selfie and simply say "hi to my sisters." It was her trademark. A simple selfie. Her sweet smiling face.

One of her last posts to the CML sisters group was a selfie taken during her ambulance ride to the hospital a few days before she died. Even then she looked beautiful.

In honor of her we are all posting our own selfies to the CML sisters group. #selfie4Karen

It's beautiful. So beautiful. One of the CML sisters counted 150 so far. Wow.

Looking through the posts, here's what struck me about the photos ...

A handful of us are in the hospital.

There's a picture from a hospital bed. A few more are wearing hospital gowns.

But we don't look sick.

We look young. Happy. Beautiful. Strong. Not sick.

I know a lot of us feel crappy - I read it in our posts every day. We struggle. We have pain. We have fears. We have frustrations. We have anger. We have cancer.

I treasure this group of women. They are wise. Compassionate. Inspiring. Giving. Silly. They understand what it's like to live with this cancer. 

And they smile anyway. 

Today, the smiles are for our dear, sweet sister, Karen. It feels like she's getting a standing ovation. 

One of the CML sisters posted "I feel like I just met all my sisters with all the selfies."

Another CML sister said "I LOVE seeing everyone's beautiful faces. I know Karen would love that we are thinking of her and celebrating her spirit." 

My #selfie4Karen

The Caregiver takes a sick day

A dear friend sent me this quote yesterday.

The Caregiver is home sick today.

And he's not a good sick person. He's moaning the same if he has a sore throat or if he has the flu. You'd think, from his behavior, that he's been diagnosed with Ebola.

My day usually happens in blocks of activity. My first big block is getting kids out the door to school. It starts at 5:30 and ands at 8:10 when Little H gets on the bus. 

It's an exhausting block of time. The 3 high schoolers get up and head to their bus by 6:15 (WHY do they go so early? Makes no sense to me.). Then, if Little H hasn't already woken up, I get her up. 

She has no concept of time. And no understanding of words like hurry, fast or run. If you have a toddler, you know exactly what I'm talking about. 

"No, no, no," I say, "please don't take everything out of your backpack to organize it by color now?"

But, lately, she's decided to "re-lace" her tennis shoes every morning. It's so frustrating I actually hid her tennis shoes one day. She had to wear her boots to school. They don't lace up. They simply slip on. 

A win in the Mommy column. 

This morning didn't take any special diversions or bribes to get to the finish line. It was a good morning. She got ready without incident or complaint. It was fabulous. I was feeling glorious, victorious, as I watched her get on the bus. 

Heading back to my room, the first part of my day complete, I'm feeling pretty good. The Caregiver is sleeping.

I lay down and close my eyes.

I jolt awake. I had slept for 2 hours. 

"I'm sorry, honey, I must have fallen asleep," I said.

"Sorry? Why are you sorry?"

"Because I'm supposed to take care of you. Can I get you anything?"

Then he says, "Oh, yeah? I don't want you to take care of me. Don't you remember, you have cancer?"

Boom.

I'm supposed to take care of him. I'm his wife.

He wasn't trying to be mean or hurtful in what he said. He's trying to be helpful. He feels guilty asking me for anything or complaining about anything. 

"You have cancer. And you will always have cancer. I have a sore throat and some awful respiratory thing. But I won't have it forever."

What am I supposed to do with that? 

How do I continue being the wife, mother, sister, friend, whatever I want to be while living with cancer?
My brain can't make sense of this one. 

I head back to bed. Feeling defeated. That's when God nudged me (or, rather, smacked me over the head) with this verse: 

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

John 14:27

Jesus isn't holding me to some ridiculous, self-imposed standard.  With Jesus, I can't be defeated.

The Red Line

My crazy, awesome family having Thanksgiving dinner.

I've been on pins and needles over here for the last month. 

I've felt pretty good lately. Actually, I've felt just good enough that I have to remind myself to slow down. To take it easy. To remember, I do actually still have cancer.

Every three months my oncologist runs a test that measures how much of the Bad Protein (BCR-ABL) is present in my blood or bone marrow. And, depending on the level, it's a good indicator of how well the Super Dangerous but Absolutely Necessary chemotherapy pills are working.

Since June, my levels have started to creep up. And in September, the level actually crossed back over the Red Line.

This magic Red Line represents MMR or major molecular response. At the beginning of my treatment for CML, the goal was to be at or below the Red Line at my 1-year mark.

So, you can see why I've been nervous, waiting for the proverbial other shoe to fall. What would my oncologist do if my BCR-ABL didn't fall below the Red Line? Change my dosage (again)? Change my medication? Yuck.

I was worried for nothing. I'm so proud of this little graph. 

The drugs are working. Wow. One year later and I'm right where my doctor wanted me to be.

The Caregiver and I just kind of stared at each other. 

Disbelief, I guess. Thinking the other shoe was going to fall and actual surprise when it was my BCR-ABL level that fell. 

Then I jolted back to reality.

"This awesome result doesn't mean I'm supposed to feel awesome now, right? Because I don't."

He seemed to hold back a smirk.

But then, being the compassionate one, told me like it is.

"He said you've hit MMR. You still have leukemia."

You still have leukemia.

The words kind of hung in the air.

You still have leukemia.

"Now it's about managing your side effects and finding your 'New Normal.' You're still going to feel shitty sometimes. Now you just get to feel shitty while staying alive for longer ... a lot longer."

We laughed.  I can be kind of high maintenance. I know that comes as a shock to you all.

Below is my beautiful masterpiece entitled Red Line. Enjoy.

This graph represents the levels of the Bad Protein (BCR-ABL) detectable in my blood/bone marrow. At diagnosis (Oct. 2013) it was 73.37%. As you can see, it plummeted, then began to inch back up. I didn't expect to get the 0.025% reading.

Another one bites the dust

One of the great things about being a Grown Up is that there are moments, sometimes even entire spans of time, of great clarity.

This isn't one of them. 

Everything is confusing. 

Everything is a struggle.

Everything is an uphill battle. I'm walking in the proverbial snow. Barefoot.

I'm trying to do everything "right." 

Yet, I can't make sense of anything. 

Damn cancer. 

Little victories matter a great deal at this point. Anything I can measure that indicates progress is something to be celebrated. Savored.
So, today, I celebrate getting through another week of my Super Dangerous but Absolutely Necessary chemotherapy pills. Today, this giant falls face-first in the dust. 

Another week down, the rest of my life to go. 

The tutu

I haven't written in a few weeks. I haven't felt well. Usually, my New Normal is not that great anyway. But I can't even seem to reach my New Normal.
I felt bad enough (vomiting and dizzy) I actually called my oncologist.
"Yeah, he wants you to come in," the nurse on the phone said. I go in Monday.
I had planned to walk in the survivor lap for the York/Poquoson Relay for Life last week. I even made an orange tutu (like you see runners wearing sometimes) that I had planned to wear. It looks awesome.
But I didn't get to go. And it ticks me off.
And then I beat myself up because I think I sound ungrateful for all that I do have. My proverbial cup overflows. I realize this. I try to model a gracious and grateful attitude for our kids. I have been and continue to be blessed beyond belief.
But today, right now, I'm just ticked off.
Damn cancer.

So, I put on my orange tutu and took some pictures. My sister in Tennessee says I should wear it everywhere I go for, at least, a week. We'll see.

Patti in her tutu.

Go Team Patticakes.