16 December 2014

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?"

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.

05 December 2014

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.