Tuesday, December 2, 2008


OK, I talked to the contact nurse for the study at NCI. Turns out the fact that my tumor is negative for the mutation means that I am of the wild type, which means that I do qualify for the study. Grrrrrrr.

Now it turns out that JHH Pathology Department did in fact not send the tissue samples today as promised. Their explanation? They did not have 20 unstained slides. Well, guess what?! The fucking authorization form that I so carefully filled out specifically says "20 unstained slides OR a block." They could have just sent the block today. But no. And of course how did I find this out? I found it out from the nurse at NCI!!! No one at JHH feels it was important enough to tell me or ask me or communicate with me about this.

I am livid. I am disappointed. I am is disbelief that this is actually going down like this.

I guess I shouldn't be. I guess this should be exactly what I expect out of our medical system. Because this seems to always be the way it turns out, doesn't it?


AP said...

Do you feel like you have any recourse with JHU? I mean not just to complain, but someone who can expedite things? Possibly an ombudsman or the head of your oncologist's division or department?

mamefati said...

This is so unfair, not cool, and absolutely infuriating.
I wish they would start doing their jobs and get you into the treatment now!
Sending you huge hugs!

Anonymous said...

How cruel to mess with your well being and your life....
I posted a comment on your last entry. I came back to read, what I was hoping would be good news.
I am thinking of you.

Gina said...

Man law school was good training for being a patient. It is crazy how a patient has to advocate for what should be simple things.

Anonymous said...

Is there a patient advocate at JHU? This has gone well beyond an understandable amount of dely.

I am just furious with your doctor as well. How does one sleep knowing that they are so acutely failing their patient?

Okay, sorry, my getting angry isn't helping you. Please do look into finding someone at the hospital that works on behalf of patients.