STILL Waiting!!!

Uuuurrrrggggghhh! I'm so frustrated! Last Friday I had an MRI at UCSF and an appointment with an oncologist there to discuss me FINALLY starting a clinical trial. After a month of requesting it, they finally received a pathology slide from Kaiser, but there was too little tumor material on it for them to test it! Though UCSF has everything they need for me to start this trial, they NEED to test my tumor to see if it has some RB factor (or something like that). UCSF called Kaiser again to see if they had a larger sample and they said that yes, they do have more... WHY DIDN'T THEY SEND THAT IN THE FIRST PLACE??? They said they could get it to UCSF by this coming Friday... another week??? Why??? UPS can overnight it!!! Yesterday, I called the lady at Kaiser who shipped the first sample & left a message on her voicemail that this was extremely urgent and that my life could depend on her getting it to them as soon as possible and that it was unfortunate that I needed to request this over the Christmas, New Years and MLK holidays, but Friday is not good enough. She shipped it this morning and it should get to UCSF Wednesday morning :)

The lesson learned here: You MUST be your own advocate when it comes to your health! Trust your instincts, listen to your body & if it feels like someone isn't listening to you, keep calling around until someone does. I was just a number to this lady at Kaiser until I let her know that she could be a big part in extending my life.

So now, hopefully my tumor will have the RB factor that I need to be in the study and I could start, possibly as soon as the end of this week :) By the way, my MRI from Friday showed that my tumor may have grown slightly since my previous MRI on December 1. The oncologist compared it to the previous one and luckily there wasn't a real obvious growth. Since I still haven't had any new physical changes, she said she thinks we still have enough time to try to get me into the first trial.

Again, on a lighter note, I figured I'd share with you all what has been keeping me busy lately. Embracing my natural old lady tendencies, I've been making a lot of crocheted stuffed animals. I made some for my neices and nephew... here's a couple of them :)

Harley's Dancing Panda & Super Mason Monkey.

I made a white Jetta for Savannah with blingy pink hubcaps and headlights, but forgot to take a picture of it before I gave it to her.

I hope January has been treating you all well :) I'll let you know if I hear from UCSF and if I start on either of the trials.

Hugs & kisses!

Laurie