Catching up

I have some "ACC in the news" posts to add to this blog - there has been a lot of activity in both the personal and research side of this cancer in the news. But first I wanted to catch readers up with how my annual scan dancing went.
The MRI went ok - if I was the type to leave my eyes open when I go into the tube, I might see the initials of all the others that have gone before me (yes, I am joking - you can't raise your hands to add graffiti - they have a rule, and confiscate all Sharpies). Hollywood just doesn't show MRIs the right way, or at least none of the MRIs I have had. Everytime, I have to have my head held securely in a frame, which is why I ask for a washcloth to be placed over my eyes to cut down the chance that I will get claustrophobic even before they move me into scanning position. I never see the frame holding someone down on TV shows. Maybe I need to ask more questions as a patient?!

At the annual head/neck visit, I got the news that the scan was clear of any new disease, and conversation drifted around to when the last time I had a chest X-ray. (ACC generally comes back as lung mets, with liver and bone mets distance chances after that.). It has been a few years, since the last time I had the X-ray they had me do a CT to look closer at a suspicious something which turned out to be nothing that needed treatment. I said I really didn't want to get a chest X-ray, and then let the doctor talk me into it (note to self - DON"T DO THAT AGAIN, follow your gut). The next day I was at work, and had a voice mail from the case manager nurse asking me to call back. Hmmm. Called her while at work (note to self-DON"T DO THAT AGAIN, go someplace private. You have a cell phone now, for Pete's sake). A phrase in the conversation stands out in my memory - "they found a shadow". Sucking air, I said, 'they have found something before - is this the same something they investigated before?" She said they seemed to think it was new. Think of all four-letter words-most of them were going through my head as I stood in my office in that grand library where I work. CT was called for, ASAP. Ok, I can do it Friday afternoon (this was Wednesday). I texted dear husband that nurse had called with not so good news (he can't get phone calls during the day), and miracles of miracles he appeared in my office with a much-needed hug. Tears of anger and dissapointment had appeared - I have been really hoping that lung mets don't show up for about 5 more years. (ACC is a different critter - you can live a long time with lung mets, unless they block a breathing hole, so having them show up isn't the total end of the world, but remember that I don't even like ticks, so additional tumors that start slowing me down will be most unwelcome.) I still had a lot of day left to serve at work, so I tried to shake off-swallow any feelings of 'poor me' and get back to promoting our great services and resources to the very health professionals and students that have or will save my life (remember, I am living my advice from an earlier post: seriously, Cheeky Librarian, hold it together).
Harder to call my mom later in the day to say 'they found a shadow and I have a CT scheduled'. As a retired med-surg nurse, she gets the double-whammy of news like that, first with it being her child, then knowing what might be around the corner. She is the one that schools me in waiting for actual news before freaking out, though I think we were both just saying words that we didn't believe.

Did the second scan (third, if you count the X-ray), and thank the sky above that the case manager called me that afternoon to say initial reports looked like there was no evident disease, but final word would be after the Tumor Board met Monday. Tumor Boards are cool - many professionals look at a case and weigh in on it, so there is less of a chance of one doctor missing something that needs to be taken care of (good blogger description here and from a med center blog here). Didn't matter, and still doesn't matter if they call for surgical treatment for my ACC if it mets to the lungs - there isn't much if any evidence that surgery or any type of interventional radiology works to stem the tide of slow-growing tumors. I have been pretty emphatic on that point - mets outside of the head area probably won't be on my list of things to treat, other than changing lifestyle (as in, 'going to live on the beach'). The only reason I go back for annual head/neck checkups is so they can make sure that nothing is growing back in either of the sites-my cheek or my temporal area. Please consider me a conservative patient - I won't be coming and saying "do anything" - I have seen what 'anything' looks like, and don't want to sign up, thanks. (My cancer, I get to handle it my way. I will fight for you to handle yours your way, honest.)

Number one son, number one daughter, and Lucky the Dog

Final word was - Tumor Board agreed that no treatment needed at this time, and I struggled to get back to caring about regular life again. Moved faster on cleaning out crap in the house - didn't and still don't want my family to have to go through boxes of 'why did she save this?' if I shuffle off this mortal coil faster than I thought I would be doing. Work - going fantastically, and plenty of it. Family - wonderful, looking forward to the upcoming winter when we are once again locked inside together for months on end. All of the drama surrounding ACC is pretty much over before it began, but I am very glad the doctor already said no MRI is called for next year. I am sitting out future scan dances for a while - the heart and stomach just can't take it.