Tuesday, March 3, 2009

Ominous Violins

You know how in movies and television a subtle, yet ominous violin foreshadows some critical turn in the plot? For instance, two girls are talking jovially on the steps of their college dorm about classes and homework when the conversation turns to the party last Friday night. In the background a soft, low violin begins to play a solitary, wavering note as the girl on the left explains that she had sex at that party and that she's pregnant now.

Violins played today during my quarterly visit to Stanford. Our chat with the med student that precedes the visit with the actual doctor went very well. He gathered information about the medications I'm taking, the current side effects and how I'm managing them.

Then my regular doctor comes in and looks a little rushed (it was probably 5pm by this time, our original appointment was at 3pm). We ask a couple of questions about where exactly I am in treatment, how things are going, etc. We get a little hung up on whether I'm considered to have had a complete cytogenetic response as I reported over Christmas.

(Violins begin playing....)

He says you really need a BMB to determine if you've achieved a complete cytogenetic response. We had always been under the impression that a clean FISH test was the same thing. Then (and here's the kicker) it doesn't really matter because the FISH test from December was botched. The numbers are meaningless.

Really??

Somewhere in the "chain of evidence" that lab orders and samples go through when they leave my arm, get processed at the lab and come back, the test was changed from CML markers to CLL markers. So it was a wasted test, though you'll be happy to know that I tested negative for CLL. (Did the sarcasm come through in that last statement? Good.) The doctor didn't figure this out till he looked at the result today during our visit. When he originally saw them back in December, he didn't get past the part of the report where it said "Negative".

At this point Wendy and I are a little dazed; stuck somewhere between magnanimity, malevolence, and dumbfounderment. People make mistakes, they're human. But this was really two mistakes: the test was botched and the fact that it was botched wasn't caught. How could something like this have happened?

The bottom line is that I haven't had anything but peripheral blood tests (CBC) since July of 2008. So we have absolutely no idea what kind of progress I've made at the cytogenetic (FISH) or molecular (PCR) level over the past 8 months. I might be in "remission", I might not. We don't know.

Remember the violin? It's still playing actually. We're not quite through the plot turns here.

My first PCR test was in June of 2008, it showed 5.45% leukemic cells. The second test was done in July and it reported .45. 5.45 => .45 is a one log reduction. As the doctor was explaining what "good" data we had and what we expect to see from today's PCR test he mentioned that it would be good to get from my current .45 log reduction to a 2 log reduction.

Wait, what?

It turns out that we had been misinterpreting the results from my past PCR tests. The first test reports the percent of leukemic cells, that would be 5.45%. All tests after that report the log reduction, NOT the percentage of leukemic cells. So the .45 on the test from July means that I've achieved a .45 log reduction, not that I have .45% leukemic cells.

So this morning I was here:
  • Clean peripheral blood.
  • 2 log reduction.
  • Negative FISH test (complete cytogenetic response).
  • Essentially in remission.
  • Hoping for today's PCR test to show that all important last log reduction.
  • Happy and skippy.
After our appointment I was here:
  • Clean peripheral blood.
  • .45 log reduction.
  • Most recent data from 8 months ago.
  • Wondering if anyone got the license plate of the truck that just drove over me.
So now I have no idea where I'm at. We have to wait for the PCR results to come back (hopefully next week or the week after).

The bottom line is that we didn't get any bad news. We just had all the good news we'd been celebrating for the last few months completely invalidated. I feel like we're back to square 1 in a way. I had felt like we were solidly on our way to remission and a return to normal. Maybe we still are, but now I have no fucking clue again. It'll be a long 2 weeks waiting for those test results.

3 comments:

Annie - Steven's mom said...

AAAAAAAAARRRRRRRRRGGGGGGHHHHHHHHH - Oh boy can I feel your frustration and all those other feelings that go along with incompetence when others are dealing with your life! It really makes me mad when such important things are botched and then that error missed! Thats just plain dangerous.

Two weeks to wait feels like a lifetime - I hope you are busy and that the time goes fast for you.....and that the results are really good too.

Steven's doc wanted to do a PCR only every 6 months - we said no. We now get the kit from OHSU and it gets done at one of the best labs every three months!

Oh Matt, I am sorry that this worry hit you - those blasted violins just suck when its in your background....

Sending you both love and light
Annie

Mountain Mama said...

I will join Annie by screaming... ARRRRRRRRRGGGGGGGGGGHHHHHHHHHHH!!!!

I'm SO sorry that this is happening. You know, out of all people I can relate to ya on this. It really sucks!

Hey, I know what you can do to kill time in two weeks! Come to Seattle and visit me! I bet you that I can turn you around to worry about me waiting for MY test result instead (did my PCR today too) :)

Or we can throw ourselves a pity party together while we both waiting for our test.

Or we can just say, screw it, the result will be here when the result is here and keep partying.

All kidding aside, I'll be praying for ya and sending you all the warm thought from here for you and Wendy.

Lots of hug!
Yanni
Yanni

hockeychic said...

NOOOOOOOOOOOO! I am joining Annie in screaming. How could they screw up like this? This is your life, not just numbers on paper? I'm incensed and frustrated and lots of other things.

Most of all, I'm sorry that you hae to go through this.

Sending you and Wendy strength and healing thoughts.