Wednesday, November 28, 2012

Zebra's Everywhere...

I see more and more Zebra attire, knick-knacks, socks, boots, purses, etc.  I don't know if it is suddenly popular or if I notice it more since it is the Mascot for Carcinoid Cancer.  I posted a pic of these nails on Facebook and got some interesting responses from some of my fellow "noids"...
I hadn't really thought much about it but I guess some don't like being reminded that they have cancer.  I can understand their feelings.  I don't think about it that way. I feel it is a good way to get the awareness out there about NET/Carcinoid Cancer.  We are such a society of visual cues, I think it is a good thing.  Just sayin...

I probably would never wear nails like these because I am a more subdued type of person.  I'm not flashy, I don't often wear bright colors. I don't like drawing attention to myself.  I do think these nails are fabulous though!!!  I would try them only I'd do the tips black instead of hot pink!

So when you see ZEBRA's... think of us.  Donate.  Help with funding research for Neuroendocrine Cancer (NET).


Heart to Heart

I had some issues last week with my blood pressure.  It as just one day. I felt really weird--I know that's not really a "medical" description but it's the best I can give.  I had a feeling that it was my blood pressure.  I decided to run up to the pharmacy by work because they have one of those blood pressure machines you stick your arm in.  My BP was really high!  I don't know how accurate those machines are... it was 176 / 101 the first time and 152/ 127 the second time I took it.  Waaaaaay high...  I didn't know what to do.  I thought about calling my doctor but it was right before Thanksgiving and I decided to wait and see how I felt the next day.

One of my co-workers said he had a blood pressure monitor and would bring it in for me to use.  He's so great!  This is one of those that go on your wrist.  Since that day, it's been pretty good.  However, I have been having heart palpitations ever since that day.  Just like the ones I had before starting the Sandostatin LAR shots.  A little bit worse than before if I'm honest.  It is usually only when I eat.  Which is strange.  I decided to call my doctor yesterday and see what they said.  They decided to have me go in and get fitted for a heart monitor. I think it's only for 24 hours.  I'm going in this morning to get it.  Might be interesting.  My friend Elle, works at the Heart and Lung Clinic that I'm going to so I sent her a text letting her know I'd be there today if she had time to come say "hi".  She said she would so I'm looking forward to seeing her and catching her up on everything.  We don't talk much but she's such a sweet person and I really love her.  We are trail-riding buddies.

I'll try and get a picture of me all "monitored up" if I can get one that doesn't show too much!

I'm back from getting all "wired" up!  Not a big deal.  Lots of tape though.  It is going to be driving me nuts by the end of the 24 hours...  It is a very small unit.  Smaller than my cell phone!  The wires are long and multiple so they are a little hard to hide.  Will try and get a picture....

Thursday, November 15, 2012

How Time Flies-Thanksgiving

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!

Saturday, November 10, 2012

Mexico Pictures/NET Cancer Day...





Today is World NET Cancer Day.  The goal is to help raise awareness for our often mis-diagnosed cancer.  Came home from Mexico to 74 degrees for two days and then yesterday, it snowed!  It snowed about a foot last night and today!   I took Sookie for a walk and she got so full of snowballs I had to throw her in the tub!  Now she's all clean and soft but not sure how to keep her from getting snowballs. 

Date night tonight so I have to run... We're going to go see Flight with Denzel Washington.  I didn't want to see it before flying across the country and over water!

Thursday, November 8, 2012

I'm Baaaaaaaaaack and NET Cancer Day is Here!

Mexico was great.  Didn't do a lot , mostly just laid around in the sun and relaxed, which is what i needed the most.  I felt pretty good most of the time.  I had some bloating and constipation issues but I get that when I travel a lot anyway.  I tried not to eat too much for this reason.  I did eat plenty and drank a few "Miami Vice's" to boot!  Not sure how but I lost a pound.  I felt like I gained weight but it was probably just water.

I know I shouldn't worry about my weight.  I should eat whatever I want and not worry about it.  The truth is, I still care.  I like being "thin".  I'm 112 lbs and 5' 5".  That's not too thin but I know I don't need to lose anymore weight!

This Saturday is NET (Carcinoid) Cancer Day around the world!  NET stands for neuroendocrine tumor.   We don't get a month yet, only a day and it has been fought for across the USA State-by-State to be officially recognized.  Utah is not one of those states recognizing it as of yet. I hope to be more pro-active in the next year and get a support group started and help raise awareness of NET Cancer.  That will be another post.

Regarding NET Cancer Day:  I've learned that not a lot of cancer organizations lend support for NET cancer research.  Most research is privately funded.  We need to help raise awareness of this cancer to increase research funds and patient support!  If you are interested in learning more, go to http://netcancerday.org/

So on Saturday, wear your zebra print or something black and white to help show your support of NET Cancer!

Bless you all-- I will post some pictures from Mexico when I get them downloaded!