Happy Birthday to Me!

Today is my birthday and I'll cry if I want too!  No, really, I am feeling much better this week than I was before Christmas.  The "blues" are lifting.  I think the Holidays are hard for many of us!

I want to say that I am truly grateful to be here for my 51st birthday!  18 months ago, when I heard that I had cancer and it had already spread to my liver, I honestly thought I was a goner!  My Mom found out her cancer had metastasized to her liver and she was gone in 3 weeks.  It was not Carcinoid but colon (small intestine) cancer.  Of course, I went home and "googled" carcinoid and read that 74% of patients live five years (or something like that).  I can't really remember.  I now know that the odds are good that I will be here 10 years from now--I hope so.  I no longer "dread" growing old.  I embrace it!  I'm debating letting my hair go gray but it's long (for me) right now and starts looking terrible when I don't color it.  I wish there was a way to "highlight" it with gray.  I do have a stripe right in the front... might be an interesting look.

I do wish my family would all get along.  We do mostly but there have been a few changes in our family dynamics that have caused less get-together's and family dinners are now a challenge (they don't happen). Kids (nieces and nephews) are moving out-of-state, growing apart and well, just growing up!  I'm trying to look at it all as an opportunity for VACATIONS!  Looks like two of them will be living in California and hey, who doesn't love trips to Cali?  I do!

I plan on going to see my sister down South more.  I'm going to just pack up the dog and drive down on the weekends when I can. After all, she does have a pool!  Woot, woot!

Cancer-wise, nothing to report.  I still won't have my next scan until February.  I've debated moving it up to January as that will be six months but I don't think waiting another month will make a difference.  I'm hoping for stability and/or no major growth!  I know I've talked about this in an earlier post so won't go into it more here.  I have been having some lower back pain, which is most likely a side-effect of Sandostatin.  I know it is very normal to feel every ache and pain is cancer when you have cancer.  Oy!

I've made a few new friends through this blog and Facebook, Carcinoid patients who are newly diagnosed or facing new treatments and surgeries.  It is one of the "good" things of cancer--making new friends.  We have also lost several this past year, which is sad (and hard and scary).

2014 is just around the corner!  I'm hoping that it will be a good year for all!

Merry Christmas, Happy Holidays...

Merry Christmas everyone!  I am not feeling the spirit of Christmas this year.  I think am depressed.  I wasn't going to post anything about it but I do want to wish everyone a very Merry Christmas or whatever you celebrate (and I mean that with the utmost respect).  

I have been under a lot of stress the past few months.  Not with health issues but work and home stuff-- it just sucks.  I feel like I am going under....  I am not going to go into detail here but I am going to see my doctor the second week of January so if I'm still feeling this way I will talk to her about it and see about taking something for it.

Minor inconveniences...

I had to cancel my appointment for acupuncture at the Cancer Wellness House on Tuesday. We had our first big snow of the season and the roads were terrible! It's about a 20 minute drive normally (actually a 30 minute drive--more later) and with the roads being so bad I thought it might take me an hour. I just couldn't risk it. My tires are bald. I have no idea how I'm going to pay for new ones. I hope I make it through this winter without killing myself or someone else (God forbid).

I did, however, go today for my Jin-Shin Jyutsu. See my earlier post for what that is exactly. It took me 32 minutes to get there. I'm not sure I'll be able to go back since I can't take two hour lunches. I'll admit that it took me less time to get back. I think I went the wrong way. I'd love to try it again. 

It was different in a good way. I laid on a massage table and she covered me with a blanket. It was quite warm, which was nice as it was 7 degrees this morning! She had nice "spa" music playing. She then put her hands on different spots of my body with very light pressure. Say a hip and a toe. The most "weird" sensation I got was when she had run her hands under the bottom sheet and under by butt. It felt like flutters. Her hands/fingers weren't moving so I know it was me feeling "something". Call it energy. I thought it was funny that I felt it mostly in my butt! I wonder if it's because of the Sandostatin shots I get every 4 weeks? I also felt it a bit in my right arm at times. Almost like a spasm but it wasn't. When she put her hands under my neck it variated from feeling good to being painful. I have such a FUBAR'd neck that I wasn't suprised it hurt! I should have told her but I didn't. I didn't want her to stop!  It did last almost a full hour.  

My biggest problem right now is stress.  I've had some very stressful days at work.  I was super stressed out this morning--what with being busy and then knowing I'd be gone for so long.  It felt good while it lasted but as soon as I got back to work I was stressed out again!  I hope to be able to go back.  I still want to try acupuncture.

Everything else is going good.  I do have this weird sensation.  I guess for a couple of weeks now.  It feels like bubbles moving around my lower right side.  It is not gas!  Not the same sensation at all.  I've never been pregnant so I can't really say but I think it's more like feeling a baby move than gas.  NO, I'm not preggers!  I just don't know what it could be (some weird spasm?).  Just call me bubbles...  :)  

I hope everyone had a terrific Thanksgiving.  I did but I don't think Sookie, my dog, enjoyed all the travel. She's not a very good car dog.  She sa on my lap the entire four hour drive there and back!  I thought for sure she'd sleep coming home because she was so tired but no, no such luck!  I came home on Saturday because Sookie has to go to the Vet on Sunday to get her eye checked (she had an eye infection) and get her vaccinations.  She was not too happy about that but the infection had cleared up and the shots were necessary. 

Take care,

Sharon

Cancer Wellness House - Jin-Shin Jyutsu

I'm so excited!  Through another blog, I learned about Cancer Wellness House in Salt Lake City, Utah.  This is an organization that provides different types of resources for cancer patients and caregivers.  They have support groups, Mind & Body Wellness Programs (acupuncture, reiki, massage therapy, meditation, etc.)  I went online and filled out their Wellness Assessment and the social worker called me today to schedule me for acupuncture and the Jin-Shin-Jyutsu, which I had never heard of!  To learn more about the Cancer Wellness House in Utah go here:
http://www.cancer-wellness.org/Home_Page.php

To learn more about Jin-Shin Jyutsu, go here:
http://www.huffingtonpost.com/2012/06/29/jin-shin-jyutsu-cancer-pain-nausea-touch-therapy_n_1638340.html?

I have been dealing with the stress of having Stage IV cancer and at times, feel quite overwhelmed.  I'm not one to ask for help.  I did see a flyer on the wall at my cancer clinic.  It said to "ask your health provider" if you are feeling depressed, overwhelmed, etc.  I don't know why, but I feel hesitant to ask my oncologist about it.  I was thrilled to learn of this program at Cancer Wellness House.  The best thing is it is free!  I'm hoping that if I can, I can volunteer for some of their events to help "pay back" any of the services I utilize.

I'm also hoping to be able to participate in their "Survivors at the Summit" event, which is a hike (or tram ride) up to Hidden Peak at Snowbird Ski Resort. Last year it was in August. I don't think they've scheduled next years yet.  If you want to learn more, click here:
http://www.cancer-wellness.org/Survivors_at_the_Summit_L3F.html

Survivors at the Summit symbolizes the challenges individuals experience when faced with cancer, pays tribute to their courage and determination, and honors the memory of those who have passed. 

I want to wish everyone a Happy Thanksgiving!

Colonoscopy Results....

Everything is fine!  It looked great.  That's what Dr. D. said.  I don't have to go back for 3 years!  Woot, woot!

The prep went better too.  I had some abdominal pain and wanted to throw-up but that is just from the delicious nasty MoviPrep.  I don't know why everything has to be lemon-lime flavored!  Every one of my contrast drinks I've had to take for my scans has been lemon-lime.  It makes me want to throw-up!  I think the hardest thing for me is drinking enough extra fluid to help clean you out.  You feel so full and bloated its hard to drink, drink, drink.  I really did though.  Lots of juice, sprite and a little chicken broth.

I'm recovered and feeling fine now.  Things are just watch and wait.  It's hard to not DO anything but only time will tell.  I'm going to try and start exercising. I know I keep saying that but I really mean it!

Take care!

Oncologist's Appointment...

I had my appointment with my Oncologist on Tuesday.  Nothing new to report--blood work is good!  My CgA is again in the normal range at 4 (ref. 0-5).  Yippee!  My pancreastatin was finally sent to ISI (Interscience Institute) (http://www.interscienceinstitute.com/) and took almost 3 weeks to come back.  It is 166 with a range of 0-135.  It's hard to say if it changed any since my previous tests were sent to a different lab with a different range but it's about the same % over the "normal" range.

ISI is the leader in neuroendocrine tumors (NET's) Biomarker Testing!

My next appointment will be in March so I'm going to have a scan the end of February.  This is the longest I've gone between scans!  It does "freak me out" a bit but I know with my good labs, things are quiet for now (on the tumor front).

We (Onc and I) did discuss clinical trials and he explained more how they work and how new drugs/tests get approved by the FDA.  That came up because of the NETTER 1 trials (PPRT) that have finally started here in the USA.  This isn't a drug but a radioactive isotope.  I sure hope that if I need this treatment down the road, it will be approved here.  I'm think it will take at least 10 years!

I am feeling pretty good.  I still get pretty tired by the end of the work-day but honestly, I can't say if I'm more tired now than I was before my diagnosis.

My next procedure is this coming Monday.  I'm going in for my colonoscopy!  I'm not looking forward to the prep.  I'm hoping this time it is a bit easier on my system since I don't have a bunch of tumors in there blocking everything from moving through!  When I "prepped" the first time (June, 2012), I had a lot of pain and nausea.  I'm hoping for an easier go round this trip!  My only concern is that on my last scan, it showed "wall thickening" near the surgical site that could represent metastatic disease or could be reactive thickening due to the surgery itself. I'm definitely hoping for the later!

I will follow-up after my procedure on Monday.  Can't wait to see my cute gasteroenterologist again on Monday!

Take care...

 

Letter to Veteran's!

On this Veteran's Day, I would like to say "thank you" to all Veterans and their families.  Those who have served and those who are currently serving.  The sacrifices you have made and are currently making for our freedom and safety is appreciated and not forgotten.

I love this country and am proud to be an American!

Thank you,

Sharon Larsen