Philadelphia - the good and bad news

I'm still trying to wrap my brain around what happened in Philadelphia on last week.  It definitely did not go as I expected.  I expected to meet this bigwig, Dr. C. hear that my treatment plan is working ok and get advice on clinical trials to look out for.  Bute when Dr. C came in the room with a social worker and another Dr. I knew it was about to be turned upside down.   So you know the PET Scan I had at Dr. C's request last week, the test my HMO has never given me, it told Dr. C two things, that the cancer has spread to my liver -- I have one 2 cm tumor and that he believes the hormone therapy I am on isn't working AT ALL.  The only thing keeping my cancer from spreading is the bone medicine I get -- Aredia, and that's a piss poor one at that.  He said no one uses that anymore and the better drug is Zomeda, which my HMO doesn't prescribe.  He thinks the he hormone therapy never worked, and it's despite my current treatment plan that I'm still here.  I really didn't retain much after that.  He ordered a bunch of tests and a liver biopsy .  I'll describe that in another post, because it's such an intense experience, and yes, you are awake through it. 
We're going back to Philadelphia on Wednesday with all the results to get a new treatment plan from Dr. C.  His associate Dr. D is going to try to talk my HMO Doc into accepting it.  This isn't going to be easy.  I will likely have to start paying for my treatment myself while I fight my HMO.  A fight I've been told by other patients is almost impossible to win.  You have to try to shame the HMO into doing the right thing
At first I was devastated, there is no doubt about my liver.  They biopsied it to confirm it's the same cancer as my breast cancer.  Now I'm also furious at my HMO.
Ah, dear readers, where's the good news? you ask.  I'm not sure, but probably that I got this PET scan and put it in front of a serious oncologist.  Otherwise who knows when my HMO would have caught the infiltration to my liver.  

Test Results

  

I had my brain scan last night at the hospital.   Took quite a bit of Ativan to get through it.  They brace your head in place in a sort of Silence of the Lambs headgear with sponges, put ear plugs in and then you're backed into a small windy tunnel -- and bombarded by noise for 45 minutes. With a break to inject you with contrast dye.  They pump air through the machine, so it sounds like the tundra.  I never opened my eyes once.  I knew better.  Once you see how close you are to the ceiling, you can't catch your breath.
The good news is that there is no sign of cancer in my brain.  I was pretty worried.  I know a few women dealing with brain mets and it's terrifying to hear about.  So, pfew!  cheers!  It was worth the 45 minutes down the rabbit hole.

the journey

Sorry to have been offline for a while.  A lot is happening right now.  I just had a PET Scan today -- something my HMO generally has refused to do and am having an MRI brain scan tomorrow.  The bigger news is that I am traveling to Philadelphia to see a big shot oncologist who specializes in metastatic inflammatory breast cancer.  I don't know what to expect, but hope he has treatment and clinical trial suggestions.  I spoke to one of his patients who has a similar diagnosis as me and she can't say enough good things about him.  She also initially had my HMO and can't say enough bad things about them.  The PET scan is interesting because they inject a tracer into you-- glucose and  through that is monitors your blood flow and metabolic activity.   The big shot oncologist that I'm meeting with insisted that I have one done to be properly evaluated.  Interesting and distressing, considering my HMO has never done one on me.  This image is part of my new series of collages.  The pattern on the paper is taken from a vintage narcotic prescription drug pad.  It was literally the watermark of the prescription, and it so aptly represents the ocean of my journey.