Wednesday, December 3, 2008

Called In The Cavalry

Today I started calling at 9:00 this morning. The Pathology department told me they were re-cutting the slides and might have them finished by Thursday but no guarantees. I then asked that they release the block and was told "We don't release blocks." I pointed our that the tissue was mine, that I needed it released, and that the signed authorization form I faxed them specifically says "block" on it. The person on the phone said she would talk to a supervisor and, when asked, said I could call her back at 2:00 to find out the progress. I called Captain Obvious to discuss this and he said "that's not good enough." We agreed it was time to call in the cavalry.

I called my MIL (who works at JHH, but not in oncology) and asked for her help. She must have burned up those phone lines because not more than 45 minutes later that same unhelpful person from pathology called me back to tell me that they would be sending out a block today! She asked if I would like to come pick it up or if they should send it overnight to NCI! I was shocked and said I would call NCI to find out and call her back. Unfortunately, the NCI contact nurse told me that having a block rather than slides means the block has to be sent to CA to cut and that takes about a week. So, another blockade to be getting into the study. Why oh why didn't she say it HAD to be slides if that is what she meant? I am sure my MIL could have gotten slides if we had known! Oh well, I am sort of convinced there is no way this is going to happen anyhow. So no emotional investment.

Then my MIL burned up some more phone lines and called to wrangle the official report of the KRAS results. She was promised that the results would be ready TOMORROW!! Do you believe it?! Plus, the pathologist she talked to recommended several other tests that should be run on my tumor in order to help me evaluate other treatment drugs (something the guy from NCCS also said on the phone the other day but I did not mention it in that blog entry).

My effing oncologist has been doing...what, exactly? I am not sure. She sure ain't done nothing for me, anyhow. She never returned my call from yesterday. She never returned my call from today. To be fair, she did answer my email, but by the time she got around to it, my MIL had already done all the work!

I also got help from my cousin, who, it turns out, works at the University of Maryland Greenebaum Cancer Center. She hooked me up with an appointment with a lung specialist. This is very important, big news. Yes, I have decided to leave Johns Hopkins over this horrible, disgustingly slip-shod crap.

Of course, none of this means I will get into the study. It could still all be too late. There are a couple of studies at Johns Hopkins opening soon, too, so while I do want to leave, I do not want to burn any bridges. I need these people and this facility... and the fact that MIL works there and can help me out if I need it, well, makes it somewhat bearable...I guess.

So, I am taking suggestions on how best to express my appreciation to my MIL. ;)

6 comments:

AP said...

I could suggest about a thousand things for you to appreciate your mother in law. I think I might just love her right now.

Sullivans said...

Your MIL is awesome. I dont know how to suggest thanking her. I am so glad to read these posts that things are MOVING ahead. The healthcare industry is so frightening and sad. It is just unbelievable.

Amina said...

a big hug
and a small thank-you
?

Anonymous said...

give her a big hug!

DeeLux said...

I really hope the UMD Greenbaume appointment gets you better results than this mess with JHH. If you need me to go anywhere or do anything, please let me know.

I suggest you make yet another galette as thanks to Obvious's mom, because it's full of deliciousness.

Love you.

Gina said...

flowers are always appropriate