Changing of the Guard

I met with my current oncologist for possibly the last time last week.  He's moving to another center and will be there by next spring (taking some time off apparently).  I have had mixed feelings about him leaving me (not really me but the practice).  I feel somewhat abandoned!  He's the only oncologist I've seen since being diagnosed three years ago.  He sees most of the carcinoid patients in Utah and is very knowledgeable about it.  He's been easy to talk to, supportive, and I don't usually wait very long to see him.  At our last visit, he did tell me that he would be more than happy to see me at his new place, which it Huntsman Cancer Institute.  Recently designated as a Center of Excellence (and it really is). Why wouldn't I want to go there?

The main reason I don't want to go to Huntsman is convenience.  I know that is not a very good reason but with my current work location, I am minutes away from my current cancer clinic.  I can go in after work to get my shot.  I rarely have to leave work early or take time off to go in.  If I were to move my care to Huntsman, I may not have to leave early to go get my shot but the drive home afterwards could be brutal.  It's right by the main Hospital and campus of the University of Utah so you get a lot of traffic after 5pm  One day, I was at the hospital for a work meeting, which ended at 5pm.  It took me TWO hours to get home!  Also, no one at works knows about my cancer (there are a couple of people but not my supervisor) so I don't want to start taking a lot of time off.

What my oncologist and I decided was to wait and see.  Where have we all heard that before!  I told him I'd try another oncologist and see how it went.  I'm going to see the onc. who the president of our support group sees.  I've heard he's good but he gets waaaaaaaaay behind in seeing patients because he spends so much time with each (which can be a good thing).  My first appointment will be in February at 11:30am.  I think I'll take the entire day off just in case!

We also discussed my next scan.  I was surprised to hear him (my onc) say that he is now leaning more towards MRI's for the liver than CT Scans.  WHAT?  Now you say that?  I believe it was last year when I asked about an MRI over CTs.  He said, oh well it's much harder to read an MRI and since you've had CTs, it would be like comparing apples to oranges.  Well yes but they are better for imaging the liver!  One of the things I've always liked about him is that he's willing to let me decide. I decided to go with a CT scan for now.  Since I'll be seeing a new oncologist, we'll have something to compare.  I am getting a triple phase CT.  usually, I just get normal ones (whatever that may be).  I'm planning on asking for MRIs going forward.

If I decide to go to Huntsman, I'll go in August.  He'll have had time to settle in a bit.  I've also said that if I have progression, I would go up there anyway.  They are a research facility and would have more possible clinical trials that I could try to get into.

My blood work was all good!  I don't think my pancreastatin is back yet.  My CgA was 4 (0-5 range). Last time it was 3 so up a point but that is not a big deal.  Normal is normal.

Almost Two Years!

Approaching my two year "Cancerversary"...

I can't believe its almost been two years since I was diagnosed with NET cancer (neuroendocrine carcinoma)! My thoughts have been going back to that time and it's funny interesting how everything is "before" diagnosis or "after."  Before surgery #1 or after.  Between Surgery #1 and #2...  you get my drift?

During a very long drive home from my sisters in Southern Utah (fighting the wind all the way), I was thinking about that day, the day after my colonoscopy, when I was walking out of the CT scan room and when ignorance really was "bliss".  I wonder what the technician was thinking?  Was he feeling sorry for me?  I know he saw all the tumors in my liver!  Was he thinking "oh, she's a dead woman walking?"  I probably would have though it had I known then.  I'm sure that most people, with that many tumors, don't have a very good prognosis.  I haven't been back to that particular hospital since that first scan or I would ask him.  He was very nice.  An old "hippie" looking guy (probably not that old).  I remember his kindness, his easy "banter" when he took me back to the room and got me all set- up.  I don't remember being nervous or even worried.  I'd had a CT scan before so I remembered the "wet" feeling when they inject the contrast.  I'd sat in the waiting room for about two hours drinking the iodine contrast and had to pee so bad (I couldn't remember if I was supposed to go), and when he asked if I need to use the restroom before we got started I was like, YES!!!

I just went back and read my very first blog post, which describes that first CT Scan. Made me laugh (a little).  Who knew where I'd be almost two years later... hear I am, still, and grateful to be alive and doing so well.  (I'd still like to know what he was thinking as he walked me out.)

So I'm trying hard to rediscover my "bliss". Maybe not the ignorance part--I'd rather be informed of what is going on but I need some "bliss" to come back in my life.  I keep saying I'm going to start exercising again and I really think it's time to get off the couch and just start doing it!  Yes I am tired, I have no energy but perhaps if I can just get started with something I will feel better!

It'll be two years since "the call that changed my life" on June 18th.  Two years since my first surgery on July 2nd and 16 months since liver surgery on June 21st.  Back in January I stated that my "goal" for 2014 was NO surgery for the year!  So far, so good.