Mystery...

No, not misery... A mystery illness!  I've gotten sick a couple of times over the past two weeks.  The first time was after lunch, at work.  I ate a lean cuisine frozen dinner and started to feel really nauseous after and then threw-up.  I hate throwing up!  It's the worst... I didn't go home that day because I felt a lot better after puking. Then another day, I got to work (felt fine getting ready), and started to feel nauseous again!  Threw up.  Went home.  I was planning on coming back but I slept until 3!  Felt OK after getting up but not 100%.  Again yesterday only this time it was much, much, worse.  I was driving in to work and started to feel shaky and hot.  I turned my air on.  I got here early, before anyone else (as usual) and went in the bathroom and threw-up!  Came back to my desk and felt OK for about 45 minutes.  This went on all day.  I threw-up 9 times!  I don't remember ever throwing-up that much!  Ever!  I should have gone home but I had my appointment at the cancer clinic for my Sandostatin shot at 4:30.  I just told myself I'd stay because I'm so much closer to the clinic from work than home.  Plus I wasn't sure if I went home I'd make it back out!

I didn't have a fever.  I found that out at the clinic when I went to get my shot. They always weigh me, pulse, temp., O2.  The nurse didn't act concerned at all. She said well, maybe you are allergic to work!  Probably some truth to that!  I did message my OBGYN to check with her whether or not it could be the progesterone she put me on.  One of the side-effects is nausea and vomiting.  She said it was doubtful to be the progesterone as it comes and goes.  If it was the drug, it would be constant.  I agree.  I didn't really think it was the drug.  Wish it would work though.  I am still having hot flashes about 20 times a day/night.  I don't really sweat much with them though.  I don't think it's "flushing" (a Carcinoid Syndrome symptom) but I'm not 100% sure.  I do look a little "pink" when I'm having one but it's hard to tell with my olive skin.  My OB was actually concerned about it being carcinoid crisis or bringing on carcinoid crisis.  She asked about my blood pressure and pulse.  I have blood pressure monitor here at work (it is a co-workers) so I checked it.  It was all A-OK.  Was higher at the clinic but that could be nerves.  Although I didn't feel nervous.

So, the mystery will continue.  I don't think it was anything I ate as I had no stomach cramping or diarrhea.  I hope it doesn't continue to happen but I guess we'll wait and see.  I feel drained today and I have a really bad headache.  I ate about half of a yogurt and a few saltines but it made me start to feel a bit yucky so I didn't eat anymore.  I'm trying to drink water.  I would sip water yesterday in between throwing-up sessions and it was about all that came up.  I never ate a thing.  It's a great weight-loss program though.  I had weighed me that morning (I don't like to be surprised at my check-in at the clinic) and when they weighed me at the clinic I was down about 1.5 lbs but this morning, I'm down 4 lbs.  4 lbs. in one day.  All water I'm sure.  I'm really trying to drink it.  Not my favorite.  Water.  Unless I am outside and it's hot.

Otherwise, I am feeling OK.  I've been really tired and I still have some discomfort in my rib area and incision area.  I've been using Mederma on my scars and my newest scar it looking a bit better although it's very red.  Sometimes it is hyper-sensitive and my clothes touching it hurt.  I'm not sure if this is from the Mederma or the nerves starting to regenerate or what.  I'm still completely numb below the incision.  I have feeling above it.  Weird.

I have blood tests in two weeks and a CT Scan the week after that.  Then apt. with my Oncologist.  I am pretty confident that I'll have no growth of remaining liver tumors and I'm hoping the areas of "fluid" in my liver will have resolved.  I'll keep you posted!  

Cancerversary!

Today is my one year Cancerversary!

One year ago today I heard those 3 little words that no one wants or expects to hear "you have cancer!"  The phone call that changed my life forever... it's been a crazy year with a lot of tests, scans, and research.  When the doctor called me and told me that he was wrong, and in fact it was cancer which had spread to my liver, I thought that I would be dead by now!  He told me it was Carcinoid but I don't remember much else of that conversation.

Now one year later and I've had 5 CT Scans, 1 Octreoscan and two major surgeries.  A busy year indeed.  I'm hoping for 20 more cancerversaries!

My next scan is scheduled for July 18th with blood work the week before and then my appointment with my oncologist.  I'm hoping for no growth in my liver tumors and no "new" tumors.  If that's the case, I think I'll finally be able to go to the twice yearly scans and follow-ups with my oncologist.  Of course, I will continue with the Sandostatin LAR shots for as long as it continues to work.

Here's to the next 20 years!

All these great ideas...

I have all these great blog post ideas at night while I'm lying in bed trying to go to sleep.  I write the entire post (and they are pretty good) and then come morning, I can't remember half of what I "wrote"!

It has been quiet.  I knew it would be.  I have follow-up tests in July.  Blood work, CT Scan and then Dr.'s appointment.  I still occasionally have some discomfort in my rib/liver area when I take a deep breath or yawn.  It's much better.  I am going to get my mammogram this month.  It was due in March but I wanted to wait until my incision had healed well before I went in and had everything smashed!  Just trying to keep on top of everything.  I did go back to my OBGYN this week for some other issues that have been bothering me.  She put me on a prescription and I'm hoping that it helps.  She did a quick ultrasound to see how my liver looked (she read the scan and report about the possible seroma or abscess).  It looks good--she saw one spot that might still be a pocket of fluid .  She did say it's not a very good picture and the scan will be much better.  It was fun to see though.  She pointed out my aorta and some other stuff.  I've seen my scan but they mostly concentrate on my liver.  I'm hoping my small tumors have remained the same and that there are no new ones.  Dr. W. has said that the increased blood flow from surgery can cause them to grow (tumors feed off blood so it makes sense).   

Insurance.  Got the news.  My plan as it is now (free to me) is going to cost $73 a month, which is not really bad but it's $73 I don't have!  I can change plans but there isn't anything "better" that doesn't cost a lot more!  I've decided to stay with what I have.  I would hate to have to switch doctors now.

I'm trying to lease Abbie and not sell her but I've had no calls.  My trainer/instructor said she had a girl emailing her all weekend while she was on vacation and she'd tell me about it when she got back.  She's back but I haven't talked to her yet.  I'm hoping something works out there and that I don't have to sell her but I will if someone comes along and wants to buy her (and meet my criteria for a good, loving home for my baby).

No vacation plans this year.  I haven't got any vacation or sick time left.

I'll keep you posted on all the nitty gritty....

Thanks!

Memorial Day...

I hope everyone has a safe Memorial Day.  I'm off to Southern Utah to see my sister Ricki.  Her daughter, my niece is going to be there with her brood (4 of her own and 1 step-son). Also my nephew and his wife with their son and new baby girl (I hope they are there).  I'm excited to see them (but not for the 4 1/2 hour drive).  We are going to go boating.  I'm taking my dog, Sookie.  I don't know how she'll handle the lake--this will be her first!  She's a timid little thing so we shall see!

I'm feeling good.  I've had some low-blood sugar issues but I've had those for years.  The shot I get every month, Sandostatin, is also known to cause high/low blood sugar.  Even full blown diabetes.  I also have been getting extreme nausea along with the shakes and sweats but I don't know what that is.  I think I may have picked up a bug.  I hope not.

My side hurts now and then but it continues to get better and better.  When it flares up, it feels like I've pulled the muscles around my ribs on my right side.  I think it's weird.

Update on Abbie.  I've decided to try and lease her instead of flat out sell her.  Mainly because she is my "rock" and keeps me sane and I love her!  I don't want to see her go to someone else.  There is a young lady (17 or 18) at the barn who may lease her.  This will probably be a half lease so I'll still be able to ride her.  We will just split the expenses.  I know this girl shows so that would be a great experience for Abbie.  I did show her once last year, just before my diagnosis.  We won or first class!  It was fun but it's not the end-all of riding.  I used to show a lot when I first started out.  I showed in the Hunter division, which is over fences.  We did really well or I fell off!  I'll try to find my pictures and post a few.

These are me and Abbie.

Isn't she pretty?

I have not forgotten what Memorial Day is all about.  I do hope we can all remember what this day means.  I have many relatives I want to remember --especially my Mom and Dad.  Both who have died from cancer.   Cancer really does suck!  

The beginning of the end... to me.

I told my horse trainer to sell my horse today.  I've been thinking about it a lot lately and just can't justify the money I am spending to keep her when I owe so much money to others, including family.  It kills me.  It makes me sad, depressed, unsettled. despondent.  Not saying she will actually sell.  I also said I would lease her so who knows.  There is a girl in the barn who might be interested in a half lease.  The problem with that is you don't know when they will STOP leasing.  Even with a contract that gives 30 days notice--you just don't know and horse people are not reliable!  Just sayin...

I have NOT had a horse in over 20 years.  It's been about 25 to be honest.  I don't know how I feel about this.  I never thought I would be horse-less.

This is me and Abbie a couple of years ago.  Just goofing around.

Abbie running around at Vista--probably last year (2012).

All is quiet...

I think it's going to be a quiet few months.  I do still have some rib pain.  It comes and goes in intensity but is always there.  I'm hoping it eventually goes away but I'm feeling doubtful.  I'm trying to stay positive.

I did get a bit of good news today!  I guess they did a CgA blood test (tumor marker) along with my CBC and LFT (liver function test) at my last apt.  It was NORMAL!  My first since diagnosis.  It was 4 with the range being 0-5.  It was 12 last time and before that a different lab did it so the "values" are totally different.  My next blood draw will be in July and we'll do a pancreastatin test, which is a better tumor marker test than the CgA.  However, a few of my LFT numbers were a bit off.  One is below normal and one is above.  It looks like a few have been steadily climbing.  I will ask my oncologist after my next tests come back.  I know one high/low test doesn't mean much--it is the trend that's important.  I would expect my liver tests to be a little "off" what with my surgery and all!

I'm joining a new gym!  It's only a couple of blocks from my house so no excuses... I want to try yoga.. I've heard its really good for adhesion's and with two major abdominal surgeries in under a year, I'm worried about having problems down the road.  I know some people are more prone to "fibrosis" than others and I hope I'm not one of them.  I think working out again will help my "mental" state as well.  Yes, riding my horse is also good mental therapy!  My sister went and checked it out yesterday and said they have some really cool "state-of-the-art" machines.

I forgot to mention that today it has been 12 weeks since my surgery!  The magic 12 week number where you are supposed to feel better!  I am getting there....

Doctor appointment, costs of treatment and insurance!

I had my appointment with my oncologist yesterday.

This was also my 11th Sandostatin shot.  Charge to date is $187,000 (plus some change).  This is what they charge the insurance company.  The insurance pays about $4,400 per shot so they've paid $48,400 for just my Sandostatin.  I'll have to add everything up one of these days to see what they've paid so far.  We switched to our new plan last July--right after I was diagnosed (in June). I paid my deductible in July and then I had to pay it again if January because our plan year is January through December.  $3,000 both times.

I don't know how they get away with that.  Now I am looking at changing my plan and lowering my deductible but I will start paying for it in July and it won't go into affect until January.  I just don't get it.  Makes me feel like this:

My visit with my Oncologist went well.  It started out with him standing in the doorway saying; "Sharon, I didn't know what to expect... I didn't know how you would look?  You look good!"  I told him I felt pretty good.  We talked about the pain I had and continue to have (not as bad as it was but it is still there). He feels that it may still be an abscess and he said that sometimes antibiotics will help but then in a month or more, it may flare up again.  We will wait and see...  I will try not to fall of Abbie.  I haven't for many years but you just never know.  I'm afraid that kind of trauma may break open any abscess that is there.  I didn't ask about that--it is just something I wonder about (and worry about).  It will not keep me from riding. I'm going to have a lesson on Thursday so we'll see how it really feels!

He also said that if I progress, he will probably not recommend another surgery but sir-spheres, which is liver targeted radioactive beads.  I hope that will be years down the road and when I said I hoped this surgery was worth it, he said he felt it really was!  I hope so. 

He wants me to have another scan in 3 months to make sure my tumors are stable and check on the possible abscesses, in my liver, of course!  I'll have blood work as well.  It'll be interesting to see if my CgA and Pancreastatin have gone down since my bigger tumors have been removed! I'll see him the end of July after my scan and blood work.    

I've had 5 CT scans in less than a year!  I think that's is a lot of radiation. I wish I would have asked about doing a MRI instead of a CT Scan.    

I'd like to say more about Sandostatin.  It's not just really expensive anti-diarrhea medication (it also stops flushing in those patients who have it--I do not).  It has also been shown to decrease tumor growth in some patients.  Hopefully with my decreased tumor load, it will keep mine from growing and prevent any new ones from popping up either in my liver or elsewhere.