I went in for my Sandostatin LAR shot on Tuesday. I had a nurse I'd never seen before so I was a little nervous about the shot. She was excellent! Didn't hurt at all. Hurt like hell after--it is hard to explain. It's like you have a big ball of ground glass in your but cheek and it makes your entire leg hurt and not want to work. Mainly walking up stairs is very difficult. It's like you can't lift your leg up. That lasts about two days and then it's just a little sore at the injection site. This nurse actually gave me the shot a little more to the side of my cheek than they have before. It seems each nurse gives it in a slightly different place. Maybe they have their "sweet" favorite spot or something. I was hoping to get the same nurse as the last time. She was so nice and told me that Novartis was coming in the next day to give them a class on giving the injections. Novarits is the maker of Sandostatin LAR. I wanted an "update" on whether they learned anything new! She was there though and said "Hi, you look so nice"... I had on a skirt, which I rarely wear. I'm a pants kind of girl.
I did ask for my pancreastatin results. They couldn't find it at first so after I got my shot, I waited for a few minutes while she tracked it down. At first she told me 111 and I said, no, that is my CgA level... hahaha. Good news though! It is down to 306, which is less than 1/2 of what it was! Normal is <150 so while still high, it is coming down. Of course, some docs totally discount this test if its not done by ISI. ISI is a specialty lab in California that has created special tests for carcinoid cancer. The pancreastatin is very particular to how it is done. My next labs will be drawn at the cancer clinic and sent to ISI. My oncologist was surprised that they were sent through ARUP. It'll mean throwing these first two out the window, but that is ok. I'm still wondering if I shouldn't be having my Serotonin level checked again. I may ask to have that added on when I go in next month. Time is going by so fast....
I still have my moments of despair... I read about all these other patients that have had all kinds of liver surgery and treatments and just wonder why? Why was I not offered ANY treatments at diagnosis? So frustrating to think that my insurance company is dictating my future survival! I try not to think about it too much or it drives me nuts. I know we have a plan and I'm hoping to stick to it. I worry that if my next scan shows no growth, then they will say--you are stable, why do anything???? I read that if you can get 90% of the liver tumors out, your 10 year survival chances are over 80%. That is why I want them out!
On a brighter note, I am going over to the church tomorrow night to help clean. I'm on the cleaning committee. Then Saturday night we are having the family Thanksgiving dinner because no one is going to be around on Thanksgiving Day. We're all heading different places (well, mainly it's my sisters kids who are scattering). My sister Sue, that I live with, and I are going to drive down to St. George to my other sisters house for the entire weekend. We are not going to cook a thanksgiving dinner though. Too much work just for the 4 of us. We'll go out to eat!
I am so Thankful for my family, my friends, my new Zebra friends and that I'm as healthy as I am!
I wish everyone a safe and loving Thanksgiving!
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