Thursday, November 20, 2008

OK, Some Of You Are Here For Answers

I have a few, but not the big ones.

I am super cranky, it's steroid day.

I am very irritated with some people. Some deserve it - some don't. But you know how I roll - When Maggie is unhappy, she is rarely unhappy alone.

I have a lot of stuff to sort out.

Last night I opened up a letter from Dana Farber. I had asked them for a copy of the report from the doctor who *didn't* win and there was a little bombshell in there.

I saw the words. Took off the glasses and read it again. the words were the same. Then decided I wasn't ready to read it, closed it and went to bed.

This morning I opened a little pack of M&Ms let the chocolate melt in my mouth and read every word carefully. Then I went on line, printed some relevant material to read on the train.

You see, a little knowledge is a dangerous thing kids.

When the words "multiple myeloma" were first pinned on me back in July I went out and did some reading. I knew that according to the Durie-Salmon scale less than 10 was MGUS, less than 30 was smoldering. When they gave me my number - 32 - I translated that to Stage I. Now if that were the only fact in evidence I would be correct.

But it's not.

But I never asked. Of everyone I have ever seen in relation to this I have never said "So, what stage am I?" Because in my mind that was not in question. And by an odd coincidence no one ever said to me "Hey, what stage do you think you are in?"

Last night's letter described me as having stage IIIA multiple myeloma on the Durie-Salmon scale.

How do you like them apples?

Now this actually doesn't impact anything or anyone but me and after the initial shock (did I mention the shock?) it's actually helpful because I now understand the urgency Dr. H and Dr. M feel, lol. I now understand their aggressive approach.

Further, I am very borderline. The Dana Farber classified me as IIIA (stage III, working kidneys) but Dr. Miller says stage IIA. So that's a judgement call. Both agree that on the ISS scale which is newer than Durie-Salmon (D-S has been in use since 1975) I am stage II. The hilarious thing about stage II on both scales is that the definition is literally "neither I nor III". Stage III on D-S has four criteria - one I solidly have, one I definitely don't have and two I am close on. So I can see why a conservative opinion is III but Dr. Miller says II. We will be asking Dr. Hochstin.

I can see how this happened because I called my primary care physician for the results and she said point blank she didn't know how to interpret the raw data and she was questioning the IGA vs. the IGG. I told her that was fine , I know, just tell me the number. So in my conversations with Dr. Hochstin I spoke of having my test results. I never said they were raw numbers with no interpretation.

Also, there are people like me, IGA, stage I or better with no symptoms and a non-elevated Beta2. But they are all very recently diagnosed like me.

The people I have been reading about and listening to all were diagnosed three years ago or more.

So this post should have links and shit.....but truthfully, I'm in no effing mood for that.

I am writing this post for the sole purpose of telling people a little about what happened today because as much as they want to know they are holding off on calling me out of courtesy. And I appreciate that.

I will not know the results of the blood tests until Monday at the earliest, which pisses me off to no end.

However, there is more reason to believe that the Revlimid is working. I really like Dr. Miller. He has a quality that I can only describe as elfish. He's not small or anything, but he gets this twinkle in his eye and this conspiratorial smile when I amuse him. I gave him my theory on why I thought Revlimid wasn't working and he followed my logic, but told me it was incomplete.

My point was that Revlimid worked by suppressing the bad plasma......"Yes" he said and began to smile and pull on his lapel, waiting his turn. But it also suppresses the whites and the platelets which is not happening to me. Plus IGA lambda is known to be drug resistant.

But it turns out that the drug resistant statement is old. It was known to be drug resistant in the past against past drug therapies. That is something I should have picked up in the IMF video conference last week. They discussed the newness of Revlimid/ld Dex.


Then he pointed out that the bad plasma crowd out the platelets and whites by overproducing. so if the Revlimid was not working on the bad plasma the numbers on the other two would be dropping, not holding up.


So we bet a dollar. If the serum M protein is lower, I owe Dr. Miller a dollar.

We will know on Monday or Tuesday.

So I am off to bed in my warm insulated lavender/chamomile room.

Tomorrow begins 7 days of no drugs.

BTW, did I mention that Saturday night is my 30th high school reunion? I am psyched! I had the greatest time in high school.

1 comment:

FbL said...

What a mix of bad news and hopefulnes... I'll be praying for the hope to be well-founded. :) *hugs*