Saturday, September 5, 2009

Big C Update

I could just send you here, or here, or here, or here. Or here.

I could just make a tape of the same conversation, and play it every couple of months for my parents, siblings and friends.

Treatment holiday is over. Apparently, if I'm not actively hammering my cancer, my cancer is actively hammering me:

  • Monoclonal Protein ... 7 (June) to 18 (July) to 69 (Aug.) (normal 0-0)
  • Kappa Light Chains Free Ser mg/L ... 125 to 169 to 262 (normal 3.3 - 19.4)
  • Kappa Lambda Ser. Ratio ... >41.80 to >56.33 to >262.50 (normal 0.26 - 1.65)
  • and the show-stopper, protein in the 24 hr. urine collection has gone from 194 to 437 to 1794 (normal 0 - 150).
I don't know what most of this means, other than it's still going in the wrong direction, and -- as long as I'm off chemo -- picking up speed.

I sound like a broken record. I feel like someone who's been left back in Kindergarten four times. The horse who can't get out of the starting gate. The little engine that couldn't.

Next week I will be assessed for a clinical trial, specifically for people like myself with difficult, persistent MM. If I'm not accepted, I'll have to go back on Revlimid or Velcade. And climb back on that crazy Dex ride, a combination roller-coaster, tilt-a-whirl, and pin-the-crying-jag-on-the-hysteric.

There is some good news. (And by now, I've become quite experienced at finding it.) First, my symptoms are moving much more slowly than my numbers, and I'm very grateful for that. Second, although this is taking on the proportions of some epic saga, some endless, tedious tale, my family and friends are still standing by. If they're suffering from any compassion fatigue, they're managing to keep it from me. I'm blessed, and thankful that I still have such incredible support.


tim's wife said...

Is there any chance that clinical trial involves vorinostat? Tim's doc is very impressed with that drug(and I've said before, the man does NOT impress easily). He's had several tough cases that responded well to it. Did they ever test your sibs to see if they were a match for an allo? Just wondering.
Ya know we're rooting for you girl from out here in Jersey.

La Cootina said...

It's Entremid (I'm not sure of the spelling); it's called ENMD 2076 in the information package. Siblings not yet tested; I'm not sure I'd be up for another transplant. Thanks for the good thoughts, though. :)

John said...

Hey Beautiful;

I'll say one thing: when you relapse, you don't fool around. I'm hoping the trial comes through for you. Oops, that's two things...


La Cootina said...

Thanks, John. I've always been good at being bad, one of my few talents. :)

Holly said...

Your perspective is amazing! Good for you and hope you can turn this around.

Susie Hemingway said...

A beautiful upbeat write, but I am very sorry to read the contents and to know things are not so good. We really hope that this trial will do the trick and get you back on track. We send all best wishes to you La Cootina from us here in the UK. Stay strong.

Sandy said...

Dear Miss Coot - this is upsetting and if I lived closer to you I would have dropped off a microwave for you to have... although microwaving your food is not the healthiest way to cook. I just want you to know I am sending you Reiki to provide what little help I can...

La Cootina said...

Thanks, Holly, Susie & Sandy, for all your good thoughts.

Susie, I think of you and Hamada often, and I send you both my very best wishes. It's a tough road we walk... but thankfully, not a lonely one.