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.

1 comment:

  1. God has better plans for you Patti! And it looks like you are stuck on Earth with your loved ones longer than you thought! I am so happy for you and your "beautiful masterpiece entitled Red Line." You are wonderful! Keep your chin up girl!