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

NET Cancer Day is November 10th

I was diagnosed with a Neuroendocrine Tumor (NET)/Carcinoid Cancer in June of 2012. I had never heard of this type of cancer before.

Most cancer organizations do not lend support for research or awareness of this particular cancer.  So, those 
of us who are being diagnosed are trying to raise awareness.

NOVEMBER 10th is NET Cancer Day to raise awareness of neuroendocrine cancers around the world. 

What you may not know is this:  This cancer usually goes undetected or misdiagnosed for years, because assumptions are made.  Doctors are taught that when you hear hoofbeats, think horses not Zebras.  The hoofbeats that are heard in our cases ARE zebras, not horses. In other words, we are not the obvious.

There is no cure.  Only rarely can a tumor can be cut out and all is good.  Most of us are diagnosed at the Stage IV level when it has already metastasized to our livers and other organs. In some cases, radiation and chemotherapy are not usually an option. I am grateful that this is usually a relatively slow-growing cancer.

KNOWLEDGE is power. I ask that you make it your mission to learn. Go to the NET cancer/Zebra/Carcinoid pages and learn more. Talk to others about their stories/experiences. LEARN more and more and more.

Please make the zebra ribbon as recognizable as the other ribbons. It starts with you committing to tell someone else’s story…and keep telling it.

It is so important to raise awareness with others.  And please support those you know, and show love to the people in your life…cancer or no cancer.

http://netcancerday.org

Name change/blood tests

I don't know if this matters but I changed the name of my blog to: mylifewithcarcinoidcancer.blogspot.com  

I didn't like just having my name up there...  

I had blood work done last Friday.  The cancer clinic actually had my Z-tube for the Pancreastatin test so they did it right there and will send that one out. The only thing I don't like about them doing it is I don't get my results as quickly.  When the hospital lab does it, the results are online usually within a day (for the regular blood work like my liver function tests, CBC, etc.).   When the clinic does it, it may NOT get posted to my personal health record (online with them) for days and days.  I know the tumor marker tests take longer (CgA about a week and Pancreastatin about two weeks), but really, can't you get my other test results up there a little sooner?

I am curious what my WBC (white blood count) and Granulocytes are this time.  WBC was high and granulocytes was low.  My doc did not say anything about it at the time.  If they are still high/low when I see him in November, I'm going to ask...  

Here's wishing/hoping for my markers to remain low!  I'm not sure when I'll get my next scan.  Probably January or February.  This will be the longest I've gone between scans since my diagnosis in June 2012 (my first blog post).  

  

Top 10

Top Ten Reasons to Live:

1. My dog.  Who will take care of Sookie when I'm gone?  Even if I live another ten years, she would be 14.  She might still be alive (and old).  My sister has promised to care for her (if anything should happen to me) I hope that she will (if needed).
2. My horse. Abbie is 14.  Ten years = 24.  Not impossible by any means.  My first horse, Everclear, lived to be 29.   I may be at a cross-roads with Abbie anyway.  I might have to move out of my sisters. The only way to do this would be to sell her (Abbie, not my sister--although that is tempting and for another post).
3. My family ( I know I have to say this one and it probably should be first but they can take care of themselves--they don't need me).  This would be my sisters and extended family.  Nieces, nephews (none will miss me much--maybe a few thoughts now and then).  I have no children.  No one to carry-on my genes which may be a good thing).  Sometimes I really do regret no having kids and at other times I am grateful! 
4. Hmmm.  Maybe this is my Top Three Reasons to Live list.  

OK.  I'm not really trying to think of reasons to live... I LIKE living.  I'm a liver... living.  It's a GOOD thing.  I thought I better clarify that in case someone thinks I'm not WANTING to hang around.  I do.  I want to become a vampire and live FOREVER...  :)  

A very drugged Abbie

Sookie in her new winter sweater

Sister's trip w/o me!

I thought I better post something even though I have no medical news to report... except I did go in for my Sandostatin shot yesterday.  It was uneventful--just how I like them (and with a $17,000 price tag, I better like them)!

Our yearly sisters trip was this week.  My sisters went without me!  They are enjoying the sun and sand of Mazatlan, Mexico.  I was sort of bummed about not going but I just don't have any vacation time at work due to my liver surgery back in Feb.  I also didn't have the money for the flight.  My oldest sis, whom I live with, has a time-share there so I only had to come up with $$ for the flight and food, etc.  Oh well, maybe next year (but I'm never going to have extra cash hanging around).

I tweaked my back on Sunday.  I have NO idea what I could have done to it.  I actually thought perhaps I slept too long... 11 hours Saturday night!  It was the latest I've slept-in for a long, long time and I felt great!  The best I've felt in years.  I went and rode Abbie and cleaned her stall but didn't twist or do anything that would have hurt my back (that I felt).  After I got home and relaxed on the couch (watched TV) I tried to stand up and just about couldn't!  It feels more like my hip but is on the lower left side so I don't know if that is considered your back or hip?  The major problem is I can't sleep!  It hurts every time I move and I sleep on my side (either) or my back.  I think I roll from side to side or back to side a lot during the night and every time I try to roll-over it hurts so bad!  Last night I caved in and took a tramadol--my go-to pain pill.  It did nothing so I got up around midnight and took an over-the-counter sleep med.  That didn't help either!  I am so tired today but I think my back pain is actually getting a little better this afternoon!  Yeah!  Of course since I don't remember actually hurting my back, my thoughts turn to cancer.  Is it cancer?  Has it spread to my bones?  Oh no!  I try so hard not to think along those lines but I know it is normal to think this way.  I decided that if it doesn't get better, I will just wait until my appointment with my Oncologist next month and talk to him, however, I'm pretty sure it'll be 100% better before then.  Whew.

The weather has gotten very Fall-ish the last couple of weeks.  Even downright Winter-ish.  It was a whopping 32 degrees this morning when I left for work.  It's warmed up to a nice 50 this afternoon.  Geez, I wish Fall would hang around a while longer!

I'm going in next week for my blood draw.  It takes at least two full weeks for the pancreastatin test to come back (maybe even three) and I want to make sure it's back before my appointment with my Onc.  Last time my WBC (white blood count) was a little high and so was my granulocytes.  I'm curious to see what they are now.  He (Onc.) didn't say anything about it so?

That's my quick update.  Sister gets back Friday night.  It's been a nice break for us.  Living together can be challenging at times!

Gifts

My niece made these Zebra themed pens for me:

I have one more I'll need to add the the "collection".  I really want to learn how to make them so I can make some for our support group.  The next meeting is mid-November so I better hurry up!

I go in Monday for my post procedure follow-up appointment with my OBGYN.  I'm sure it'll be a "quickie".  All is pretty good.  I'm only dealing with hot flashes now.  I do have some mild pain/discomfort in my lower right side, where on my last scan they noted a 1.2 cm lobulated growth in the right adnexa.  I Dr. Googled the adnexa and that is simply the area where your ovaries and fallopian tubes are.  Hmmm...  It is "enhancing".  Which I believe means it is taking up the contrast material ingested/injected for the scan.  I will ask her.  I think she had said we would follow-up with an ultrasound in January when I saw her next but that was before my procedure...  Maybe she'll order an ultrasound.  I'm not sure if I want to push for one or just wait until my next scan and see what it says.  I guess I can ask her.  I'm pretty sure it is nothing to worry about.  Probably another cyst.  I did have some intense pain last Sunday while riding my horse, Abbie.  It was very sharp.  It quit after I got off.  I thought perhaps it was a cyst and had burst!  However, I am still having that same mild burning/pain feeling in that general area.  I hate sounding like a hypochondriac but cancer does that to you I guess.  You worry that those aches and pains are cancer....  I know it is probably not but I still worry.

I'm still dealing with fatigue but not the "brain fog" that I had.  I'm usually really tired in the mornings and afternoons/evening.  I try to rest when I get home from work.  

It is a dreary, rainy, cold day here today.  48 degrees!  Brrr.  I hope it warms back up as I'm not ready for winter!

Hope all is well with you and yours!

Parting ways..

Metropolol 

And I have parted ways!  I felt like it was causing my extreme fatigue and since the need to take it wasn't medically necessary, why continue?  I was taking it for the heart palpitations I was experiencing since just before my diagnosis.  They were very annoying and that is why I decided to try the drug.  Hey, it worked. My palps stopped.  I've taken it for just about 9 months.  

I felt like my brain wasn't getting any oxygen.  My heart rate was very low (usually low 50's or less) so how could my brain be getting the O2 it needed?  I did not stop taking it before asking my oncologist.  I asked the nurse when I went in for my last Sandostatin shot and he came out to talk to me.  I think he was a little concerned when I told him just how tired I was.  I don't think he thinks it's the metoprolol, as I was on the lowest dose but since stopping two week ago, I am feeling much better! I am still tired but I don't feel like my brain isn't able to function.   

I think they (the palpitations) were caused by the Carcinoid tumors in my liver producing high serotonin levels (part of Carcinoid Syndrome) and since most of my bigger tumors have been removed (surgically) and my labs have come down, then I probably don't have a lot of circulating serotonin in my blood. Hopefully, they will not return (and this will confirm my suspicion--it will also give me a "heads-up" if they come back down the road).  I have blood work due the end of this month so I'm going to ask them to add a serotonin blood test as well (just to see where I'm at now).  

I am going in to see my OBGYN in two weeks for my follow-up to my failed ablation.  I think the fibroid she found and removed was causing my bleeding issue as I am no longer bleeding.  Woot, woot.  I am so glad.  I hope it never returns.  I really didn't want to have to have a hysterectomy so I am happy!

My blood test results will determine "next steps" as in when my next scan will be.  If my tumor markers remain unchanged then we'll wait until Jan/Feb or ever later.  I'm sure if they are climbing, I'll get one sooner.  I don't expect any changes.  I'm hoping to continue to feel better and gain more energy so that I can finally start working out again.  I think it would really help me mentally.

Thanks for listening!  I'll post an update after my next round of labs!

Mesothelioma Awareness!

I received an email from the Community Outreach Director of the Mesothelioma Cancer Alliance asking if I would help bring awareness to their cause.  September 26th is Mesothelioma Awareness Day!  Below is a link to "8 Things You Should Know About Mesothelioma".  I did not know most of these.

Please help raise awareness!  I edited this so that you can click on the link below to go to this link!

http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm

Mom..

I was reading a blog the other day and it made me realize I've never talked about my Mom and her last days. This blog will be about that time in my life and about her...

I'm not going to start at the beginning but at the beginning of the end.

My mom had lung cancer (surgery and chemo) and then had some stomach pain so she had a colonoscopy, which found a tumor in her small intestines (same place as mine).  It was cancer--I am not sure what they called it.  Probably adenocarcinoma.  She did not have Carcinoid, like me.  She didn't want more chemotherapy.  We didn't push her.  In hind-site, of course, we wish we had!

A few months later she had a pain in her side and after a CT Scan the doctor told her that her liver was full of tumors to numerous to count.  She went in for a biopsy but her blood was too thin for them to do it.  They tried different drugs to help her blood count come up but to no avail.

Her doctor told her there was nothing they could do. She said she'd do anything they wanted her to do. They said they would call hospice.  (This was 11 years ago.  I'm not sure if there would be any options now as bad as it looked.)

I had just arrived at my work parking garage when I got a call from my dad.  This was not quite 3 weeks after her last appointment with her doctor.  My dad never called!  He said my mom wouldn't get out of bed.  He didn't know what was wrong.  I could hear the distress in his voice.  I got back in my car and headed to my parents house about 30 minutes away.  I think this was a Friday.

When I got there, my mom was still in bed.  I asked her what was wrong, was she in pain?  She said she just didn't want to get up.  There was no point.  I laid down on the bed next to her and we talked for a bit.  She said she didn't want to die.  She wasn't ready.  I told her I didn't want her to die either--

I did finally get her up and to the bathroom.  I'm not a very big person and neither was my mom but we barely made it!  I also got her to go downstairs to her chair.  I made some calls to my sister and her doctor (about hospice and why we hadn't heard from them).  I don't remember exactly but I do know I got a call from hospice and they were sending a nurse right over.

The nurse arrived and talked with my mom for a while.  Her main concern was pain management.  She also asked if we wanted a hospital type bed for her so she didn't have to try and go up and down the stairs.  They had one delivered that day!  My mom did not want to die in the hospital.  She wanted to be home.

My pretty mom!

Speaking with the nurse I explained my concern that she (mom) wasn't eating anything.  The nurse (I can't remember her name but she was very kind and compassionate).  She told me not to worry about it because at this point we would just be feeding the tumors.  I was also worried about her drifting off when answering questions.  Mom would start to answer or ask a question and then just sort of drift off in mid-sentence.  She (nurse) explained that when the body is shutting down, all the oxygen goes to trying to keep it alive and the brain gets less and less oxygen.

That afternoon my other sister came down and a few other people dropped by.  One of my mom's good friends, Lyla, brought her a strawberry frozen yogurt and she did eat a few bites.  My husband also had come down so it was a bit busy and noisy with people in and out.  One of the last things I remember my mom saying, in a whisper, to Lyla, her friend, was that she wished everyone would go home!

We did ask everyone to leave after that.  I figured she wanted some peace and quiet.  My sister went to get her pain meds filled and she seemed more comfortable after we got everything on board.  The nurse had told me to call her at anytime if I had questions or problems and that she'd be by the next day.  My sister went home that night and was going to come back in the morning.  I was going to go into work on Monday and get my FMLA paperwork filled out so I could take some time off to help care for my mom.  We were planning on taking turns between the three of us.  My other sister was coming up from her home about 3 hours away the following day.  Another friend of my moms who was legally blind was making arrangements for her daughter to bring her down so she could say her "goodbye".  

I think my mom was just done.  She was never one to want anyone fussing over her!  She was not responding to me much that evening.  She moaned a lot off and on so I gave her more pain meds when she seemed to need them.  I slept on the couch.  She passed in the night.  I knew as soon as I woke up that she was gone.  It was three weeks from the time the doctors told us there was nothing they could do.  When I called the hospice nurse, she was shocked.  She thought she would last a week or even two.  

This post came about due to a question one of my fellow "noids" asked on a support group site.  He wanted to know if anyone knew of any stats on what we die from (liver, tumor growth, heart problems)?  It made me think of my mom.  This post was very emotional for me to write.  I think I know how I'll die.  Most likely from liver failure.  

I do have some regrets.  I wished I'd stayed awake and been by mom's side when she passed.  At least I was there and she wasn't alone...

Mixed emotions...

I went with my friend for his final radiation treatment for prostate cancer.  He had 45 treatments and is now done!  He got to "ring the bell".

I was left with mixed emotions.  While I am very happy for him--his treatment has ended-- it made me sad to realize I'll never get to "ring the bell".  I'll never be "finished" with treatment.  Not that I have much in terms of treatment for my cancer.  A shot every four weeks.  Surgery.  Down the road I know there will be more. Perhaps liver directed therapy if my tumors start to grow or the number increases.  My treatment will not end.  Not until I do.  There is no cure.  There is little chance of remission.  No NED (no evidence of disease).  Not unless there is a miracle and my cancer disappears!  Hey, people say it happens.

I do hope his cancer never comes back.  I'm not sure of his risk of recurrence but I think it's pretty high.  He had a pretty aggressive cancer.  I asked him if it felt weird to be on his own now.  No more daily appointments.  No more feeling like you're really doing something to kill the cancer.  I get it.  When I went from lots of appointments, surgery, tests, etc. to basically a shot, it was like being cut-off.  Set adrift.  I felt somewhat lost.  I'm sure he does now too.  I told him I understood.  It is normal.  I read a lot of cancer patients blogs.  It isn't the first time I've heard about that feeling when treatment ends.

I'm okay with my treatment for now.  I feel good about my decision to go ahead with the liver surgery.  Even knowing it wasn't a cure and that it would still leave me with several tumors.  I believe it bought me time.  Hopefully a lot of time!  I am still very, very, tired.  Maybe not quite as tired as I was while taking the progesterone but pretty freakin exhausted.  The jury is still out on whether or not the removal of my uterine fibroid will stop my bleeding.  I'm still spotting but it is getting lighter.  That reminds me, I need to call and make my post-op appointment with my doc.  Better get to it!

Cheers!

Good Quote & Blog

This is an excellent quote I just pulled from another blog http://www.livinglegendary.org/
It is not the her quote but I just thought it pretty much sums it up.  I too dislike the "fight" and "lost his/her fight with cancer", etc., etc.

Cancer is not a battle that we win or lose. It is not our fault or a sign of weakness. We are not responsible for our cancer outcomes. The crapshoot of cancer and recurrence can NOT be controlled. Celebrate yourself for each time you, despite all the trauma of cancer, treatment, and the mindfuck of “survivorship”, choose to love, live, lust, laugh… We are not a success story based on our cancer progression or not. We succeed when we are courageous enough to keep walking forward even with missing parts, severe pain, addled brains, and broken hearts.–Dr. Erica Bernstein

Sadly, Jen Smith, the writer of the blog "Living Legendary" and the book "Learning to Live Legendary" just entered hospice.  She has stage IV breast cancer and leaves behind a 6 year old son.  Jen is 36.  I've ordered her book and can't wait to receive it.  You can order it through Amazon or go to her website above.

I wish I had come upon her blog earlier.  It is so hard to start reading when you know the ending but that is almost always the case with a stage IV cancer diagnosis.  I want to "live legendary" and make each day count.

50/50

My procedure was 50% successful!  I guess I could also say it was 50% unsuccessful but I'm trying to be positive.  One positive is that i came through it without any evidence of carcinoid crisis.

I did have a fibroid tumor, which on the pathology report say's "submucosal leiomyoma", a rarer type of fibroid (5%) that grows into the inner cavity of the uterus and can cause... irregular bleeding!  It may be the reason I was bleeding all along.  Now, why did she seem surprised I had a fibroid when it said I did on my cat scan done in April?  Well, it didn't mention it on my scan I had in July.  I need to go back and read that report. However, after she removed the fibroid, she could not get the ablation device to deploy.  I'm not sure exactly how it deploys but I guess my uterus was done with her and said "hell no, you're not doing anything else to me today"!  She tried two devices (both worked outside the uterus) and neither would deploy in me. this is why I say my procedure was 50% successful!

On another good note, the pathology all came back with NO signs of cancer!  I was a little worried.  You just never know.

I have a follow-up appointment in 6 weeks.  She did say that if this doesn't stop my bleeding, I have two choices.

1. Live with it (not a very good choice).
2. Hysterectomy.

Not sure how I feel about another surgery.  I guess it would depend on how she would do it and how much work I'd have to miss.  It's actually more the "how much work would I miss", than the surgery issue.  I just have NO sick or vacation time to take this year.  I would definitely have to wait until next year to do anything.  I'm just going to have to wait and see...

I hope everyone had a great Labor Day weekend!

The "F" word. No, not that one...

Not that word.... the Fatigue word!  I am so, so, so tired!  I hear a lot about chemo induced fatigue.  I can't imagine what that is like because this is bad.  I'm on 3 meds that all list fatigue as a side-effect.  I really think it's the progesterone but I'm not sure...

My OB had me double up on my progesterone (to stop or reduce my bleeding) until I have the uterine ablation and I think it is causing me extreme fatigue.  I am so very tired.  I can barley function or keep my eyes open!  I debated cutting back to the "normal" dose but I'm trying to tough-it out. I'm not sure it's worth it.  I'll give it another day or two and then drop my dose back down.  I've had the bleeding so long now it won't matter for two more weeks.  I'd rather feel better than feel like I'm living in a fish bowl.

I'm still having a pain in my lower right side.  I think it's the cyst(?) they mentioned on my last scan. Sometimes it feels like a burning pain and at others it just throbs.  I'm going to tell my doc when I go in for my pre-op on Friday (next).  Maybe she can take a quick look via ultrasound.  I'm sure it's nothing but once you are diagnosed with CANCER, it makes you worry about everything.  Cancer patients do have a higher chance of getting a second cancer than those without cancer.  It just is what it is....

OK... I wrote the above a week ago.  I am still very, very tired!  I continued to take the double dose of progesterone until today.  I went to refill it yesterday and the pharmacy said my insurance wouldn't let me until next week.  The day of my procedure.  I won't need it after that! ARGH.... they told me I would have to have my doc call in the dosage change.  I sent her a message about it but haven't heard back.  I only have 3 pills left so I'm taking two today and one in the morning (I've been taking two in the a.m. and two in the p.m).  My pre-op appointment is tomorrow so I will ask her what she wants me to do.  I'm curious to know if she thinks its the progesterone making me tired.  I can't remember when my fatigue started. Before or after I doubled-up?  I hope its the medication and not something else because I want to feel better!  I just hope this ablation works.  Wednesday is the day.  The hospital called today to get me registered and fill out my "Health History".  Hey, I'm not having surgery, it's just a "procedure"...  I guess it doesn't matter.  I still don't know if they are going to use "conscious sedation" or general.  I'm sure it's propopherol--just like when I had my colonoscopy.  I am nervous about it.  I don't know why.  Here I've had two major surgeries and I wasn't that nervous but here I'm going for a same-day procedure and I'm worried about it.  I'm worried about possible complications.  I think I will feel better after I get all the details tomorrow.

Tomorrow is the day!  Ablation city... :)

I found this today:

It is a Zebra made out of Lego's!  Its at the Houston Zoo.  So cute!

My appointment with my doctor last Friday was mainly to just sign the release forms.  She told me that she'll scrape my uterus and sent that to pathology.  Just to be sure that there isn't anything else going on (more cancer).  I sure hope it isn't.  Then she will ablate the lining with a laser!  I still don't know if it will be general anesthesia or not.   It is up to the anesthesiologist.

I still don't know what time I have to be there.  They are supposed to call me anytime now.  She has two other procedures and wants to do mine last so that we're sure to have the octreotide on hand.  Her other procedures shouldn't take long.  I'm hoping it'll be before noon though!  It is hard to not have anything to drink for that long.  Not eating doesn't bother me but no coffee?  Sad...

On the "fatigue" front, I am still really tired but I think it's a bit better. No progesterone now for 4 days.  Not sure how long it take to get out of your system.  Not long I think.

I will let you know how it goes....

Mother Teresa's Humility List

I saw this on another blog "The Silver Pen" and wanted to share it with you.  Thank you Hollye for sharing this with your readers.  The Silver Pen is a fantastic blog if you are interested.  Hollye shares her breast cancer journey and SO MUCH MORE!

I hope that you are as inspired by Mother Teresa’s Humility List as I am!

1. Speak as little as possible about yourself.
2. Keep busy with your own affairs and not those of others.
3. Avoid curiosity (though I don’t think that she is referring to learning, here)
4. Do not interfere in the affairs of others.
5. Accept small irritations with good humor.
6. Do not dwell on the faults of others.
7. Accept censures even if unmerited.
8. Give in to the will of others.
9. Accept insults and injuries.
10. Accept contempt, being forgotten and disregarded.
11. Be courteous and delicate even when provoked by someone.
12. Do not seek to be admired and loved.
13. Do not protect yourself behind your own dignity.
14. Give in, in discussions, even when you are right.
15. Choose always the more difficult task.

I need to work on these!  

Not much...

Not much to report.  I guess that is a good thing.  I did get my pancreastatin back.  It was 119 so less than half of what it was!  I'm not sure what the normal range is.  It doesn't say and I haven't been back to the clinic to ask.  I think it is <100.  We will watch this one as it can be a more sensitive marker to show tumor progression.

Warning:  Girlie talk....
I have the uterine ablation scheduled for the end-of-the-month!  Yeah!  Still bleeding and I'm so sick of it.  I have to go in for a pre-op appointment the Friday before so I'll find out more then--like how exactly she will do it.  I know there are different techniques such as using a laser to burn the lining off or hot liquid to literally "boil" the lining of the uterus.  I'm glad I'm going to be "out" for it!  I don't know if it will be general anesthesia (doubtful) or conscious sedation (most likely).  All I care about it that I won't feel anything or remember anything (hopefully).  Of course, with Carcinoid Cancer there is always a risk of Carcinoid Crisis--this is where your blood pressure and/or temperature can plummet or go sky high and cause cardiac arrest.  This is why I have to have this procedure done in the OR.  Usually, it is an "in-office" procedure.  Octreotide can be given before, during and after procedures to help prevent Carcinoid Crisis but I don't know if I've ever needed it or gotten it during either of my surgeries (I know they had it on hand).  I know that I never had any issues during my liver surgery because I asked.  I'm not sure about my first surgery, the right-hemicolectomy. I doubt I had any problems.  Now that my tumor burden is very low, I would be surprised if I had any problems with the procedure but you never know.  My OBGYN is so on-top of everything, I'm sure she will take precautions (and I'm going to ask).  It would be my luck to have issues for a simple procedure but not major surgery!

Everything else is going OK. I've been very, very, very tired.  I'm not sure why. I am not (or at least I wasn't) anemic.  I guess I could be getting there.  I sleep pretty good.  This morning I felt like I was drugged.  I didn't even think I should be driving.  Luckily, it only takes me about 10 minutes to get to work.  I felt better by about 10am.  I just want to go home and lay down.  I don't usually nap but I think I might try tonight.  I just don't want to screw up my night-time sleep, you know?  I have no idea if this fatigue is related to the cancer or medication.  I think it's probably medication.  I take 3 drugs and they all list fatigue as a possible side-affect.  At least after my ablation I should be able to stop taking the progesterone.  I don't care if the hot flashes come back.  I can deal with those (I think).

I'll keep you posted on the procedure.  I don't, at this time, even know what time it is scheduled for!  I hope not too early!  I am not a morning person.  Of course, I don't want it to be too late in the day as I won't be able to eat or drink anything.  I'm hoping and praying for good results.  My only other option would be a hysterectomy and I really don't want another major surgery!    

Drifting...

I am officially now in the "watch and wait" club.  I feel like I am a piece of driftwood....

The ocean tides have brought you in.
A stranger in a world of sand. Each grain unique among man.
The miles you may have traveled. The wonders you may have seen.
Stuck among the land. To wait, to watch, to wonder...
Will time erase you?
Will time return you to the sea?
Or steal you forever from me?

************************************

Drifting is also: A driving technique where the driver intentionally or unintentionally oversteers, causing loss of traction in the rear wheels or all tires, while maintaining control from entry to exit of a corner. A car is drifting when the rear slip angle is greater than the front slip angle, to such an extent that often the front wheels are pointing in the opposite direction to the turn (e.g. car is turning left, wheels are pointed right or vice versa).



I first saw it in the movie "Fast and Furious 2 or it might have been "3". It looks pretty fun but I would never dare try it!

I wrote the above little "ditty" before my appointment with my Oncologist yesterday. I thought that I would feel more "adrift". That's not really what happened or how I now feel....

My appointment went well, I never know what to expect.  Last April he said that if my scan was good, he probably wouldn't need to see me but every six months. I wasn't sure how I felt about that but obviously, I felt like he was setting me adrift!  I feel better when I am actively seeking treatment.  Looking for a surgeon that would resect my liver tumors took about 6 months.  I was doing something. I was in motion.  Not "waiting".  Now I am waiting.  Waiting for that other shoe to drop.  I am trying not to think that way.  I want to move on.  Move forward...  an object in motion stays in motion.  Motion is a good thing--motion is life!  

We looked at my scan together trying to figure out how many tumors I really have. My scan reports have always said "over 20".  My liver resection took care of the biggest--about 7 tumors.  The new scan just say's "multiple".  There does look to be many but some are so small ( a few millimeters) that he's not sure if they are tumors or something else.  My biggest is now 1.2 centimeters, which is pretty small.  The good news, of course, is that they are not growing! I am considered "stable". Stable is good in Cancer-land. Not as good as "in remission" or "NED" (no evidence of disease) but I know that I will never be NED! 

He mentioned they are starting a clinical trial for one of the new VEG-F(?) class of drugs.  I didn't get the details.  He said they do like to see "progressive" disease and since I am stable, I don't feel like it would be worth it.  Why take the chance on bad, life altering side-effects when I could go years with stable disease?  I asked how long they would be doing it and he said probably a couple of years so it is something I can do down the road if I become "progressive".  I told him I am not opposed to doing a clinical trial though.  I also told him, again, about the PRRT trials starting up around the country.  This is something I probably could have gotten into had I not had surgery.  I even gave him the print-out from clinicaltrials.org website for him to keep.  He said he had a couple of patients who were really interested in doing it.  If you would like to read more about PRRT, a great website is: www.prrtinfo.org.

I did ask him about having MRI's instead of CAT Scans and he explained the difference in the results, time, etc. I think I'm sticking with CAT Scans for now.

My pancreastatin test is not back yet but I am expecting that it will be half again what it was last time. This is my third pancreastatin test (a more sensitive tumor marker test thant he CgA). The first one was over 600, second 300 so if it follows the trend of my CgA, it will be about 150. I think <100 is the normal range. We decided to keep doing my tumor markers every 3 months so I will meet with him again after that, however, that would be October and he is on-call that week so not in the office. (How nice that they don't have to come in when they are on-call.) My next appointment with him will be in November, which is fine with me! My scan should be in January but he said if my "markers" are good then I could push it back if I want. I'll wait and see but for now, I don't mind waiting. All-in-all it was a good appointment and I left feeling very positive.  My shot went well.  I had a "newbie".  I think it was her 1st Sando shot but she had supervision.  It hardly hurt so I told her she did a great job!  I'm a little sore today but just the usual tight feeling in my hip and leg.  

So I am a bit ADRIFT...  adrift in the sea of cancer.  I'm feeling good though.  Now we wait, we watch, we stay vigilant.

House MD

One of my favorite shows was House.  I'm sad it was cancelled.  I had heard that they had "touched" on Carcinoid Cancer on several episodes.  I found this list on another blog and thought I would share it here.


Season 1 Episode 3 "Occam's Razor" (Chase hypothesizes patient has a carcinoid)
Season 1 Episode 5 "Damned if You Do" (Cameron hypothesizes patient has a carcinoid)
Season 1 Episode 14 "Control" (Wilson does a CT scan to rule out carcinoid)
Season 5 Episode 10 "Let Them Eat Cake" (Kutner hypothesizes patient has a carcinoid)
Season 5 Episode 18 "Here Kitty" - (Final diagnosis - by House of course - is carcinoid tumor of the appendix)

I'm going to be doing some old episode watching soon.  http://www.usanetwork.com/house

3 days before my colonoscopy that found my cancer, I watched another show.  It was about a doctor who was in a coma but his "spirit or soul" walked around the hospital helping other patients get diagnosed and saved.  One of these patients was a young boy about 8 to 10.  He kept having "attacks" that would eventually cause him to pass out and his heart would stop.  It was diagnosed as Carcinoid Tumor.  Of course, they did a quick surgery and declared him "cured".  I cannot remember the name of the show.  It was just so strange that less than a week later, I would be diagnosed with the same thing!  Perhaps it was a "pretense" of things to come.  If i can find the name of the show, I will post it.  

CT Scan...

I had my follow-up CT Scan this morning.  The report was online by the time I got to work!  FAST...

My blood work came back as well.  Everything looked OK to me.  CgA is still within normal range but since it was a different lab the "range" is slightly different on all these tests so I can't graph them!  Rats... They'll do the CBC and Liver Function tests again when I go see my oncologist next week.  Maybe I'll make them do the CgA over again as well (that is one of the tumor marker tests).  My pancreastatin is not back yet but I'm pretty sure it will be lower than the last one, which I can't find so I don't know what it was.  Another rats!

So... CT scan results show that my areas of fluid(?) in my liver are mostly gone!  1 area is still there but much smaller.  They did not include measurements this time.  No new tumors in my liver, which is fab!  remaining "nodules" are still multiple and scattered throughout but have remained unchanged since the reference scan (did not say which scan they referenced).

Some interesting new findings although I think mostly unrelated to my cancer are that (this may be TMI for some so stop reading here--my comments are in blue)...

The endometrium appears irregular and mildly
heterogeneous (I Dr. Googled this and heterogeneous just means "mixed" or "different"). There is tiny fluid in the cervical canal (no idea what this could be?) . The left ovary is normal (yeah for normal). There is a lobulated 2.1 cm low density structure in the right adnexal region with marginal
enhancement (probably a cyst -- the Adnexal region is the "ovaries and fallopian tubes" (again per Dr. Google). There is small fluid in the right adnexa and right posterior pelvis (ruptured cysts? I have been having some pain in that area. I thought it was from my surgery but Dr. Google said it was most likely from ruptured cysts).

FINAL IMPRESSION:

1. Stable to slightly smaller multifocal liver metastases (yeah!).
2. Superior wall thickening the proximal transverse colon near
the inferior margin of the liver. This could represent
metastatic involvement (not yeah!) given the proximity to the previously
resected liver lesions. Reactive thickening related to previous
surgery could also be the cause of this finding (most likely but I am wondering if I should go in for that follow-up colonoscopy--will ask my Doc--again).
3. Involuting right ovarian follicle (Dr. Googled that and it means a collapsed follicle, which is what the egg is in but I'm probably not ovulating so it is common for the follicle to collapse).
4. Mild irregular appearance of the endometrium and small fluid in the cervical canal. Consider
pelvic ultrasound for further evaluation (hmmm, probably why I am still bleeding. Not uncommon and is why my OBGYN put me on Progerstone--just hasn't stopped the bleeding but will give it more time).
5. Mild diffuse urinary bladder wall thickening without focal mucosal lesion (????  Have no idea on this one).

I did message my OBGYN and told her I had my CT Scan and to look at the report if she had time.  Haven't heard back from her yet.  If I had done my Dr. Google beforehand, I probably would not have messaged her and just waited until after my appt. with Oncologist next week.  I'm pretty sure she will say that there is nothing to worry about yet and to come see her in another month or so and then maybe do a follow-up ultrasound or something.  You never know though.  They may want to do that ultrasound.  I just dont' want to have a colonoscopy when I am bleeding cause that is just gross!

On a totally different thought... I have 1/2 leased my mare Abbie to a very nice lady! Abbie seems to love her and she rides really well (I havent' seen her ride but my trainer said she is very soft and light in her hands, which is good).  This will help me a little bit financially and now I can get my window in my car replaced as it has cracked all the way down now.  On the drivers side directly between my eyes!  

I will post next week after I meet with my Oncologist.  My guess is that he will want to follow-up with me in 6 months now!  Woot, woot.  Not sure he will have any concerns about the rest of the report.  I think the fluid and all that is probably due to cysts, which are pretty normal and my OBGYN is keeping an eye on the continued bleeding issues which hopefully the progesterone will stop in a few more weeks.  It's been 7 weeks and she said to give it 6-8 weeks to work.  I don't think it's going to work.  May be looking at a D&C or Uterine Ablation but we were hoping to avoid the OR again!  Part of me just say's take it all out but I really, really don't want another surgery!  That would suck but not having periods/bleeding would be a huge bonus!  I would probably want to keep at least one ovary so I don't go into instant menopause.  Oh, the progesteron has helped with my hot flashes. I'm not having many at all now.  They were daily and now it is just occasionally!  One of the GT (good things) to come from taking it.    I am, however, having some pretty bad headaches and I'm very, very tired.  Both side-affects of progesterone.  

Take care and I will post next week after my appt.  

Frustration

Oh the frustrations of having a "rare" cancer!  I went in this morning for my scheduled appointment to have my blood drawn for my 3 month checkup.  Two weeks ago I reminded the nurse that they had to order the special Z-tube for one of my tests.  It is very sensitive and I've been advised by many that only one lab does it right (ISI in California).  ISI will send them the tubes free.  They can also get the tubes from Lab Corp.  I've had the test done at the hospital lab before and they knew what it was.

So, I get there and guess what?  No Z-tube.  I waited and waited and the medical assistant finally came out and told me she didn't know where the "special" tube was and she was looking for it.  I told her I had reminded the nurse two weeks ago to get it.  Anyway, long story short.  They called the hospital lab and they did have one.  They sent me down to the outpatient lab where I had to register, wait again, wait some more and finally got the stupid blood work done!  THE big problem is that this means the test won't be sent to ISI.  It will most likely go through Lab Corp to ARUP and then on to Cambridge LABS who apparently don't do it right.  In other words, a HUGE waste of money and time!  ARGH.  I was gone for 2 1/2 hours for a five minute blood draw.

I can't wait to see what goes wrong next week at my CT Scan appointment.  Hopefully nothing since I've been there many times now and I think they know me!  Hahaha.  I tried to be "nice" while I was explaining to the medical assistant and their boss, why the test needed to be sent to ISI.  They just looked at me like I was from another planet.

This happened this morning starting at 8:30 am.  It is now 4:50 pm and I am still mad!  I can't let it go...  I think I'm having a bit of "carcinoid rage".  I even had palpitations and felt like I couldn't breath.  However, I must say I was nice to all the medical staff.  They knew I was frustrated but it really wasn't their fault.  It was the nurses fault and my Doctors fault for not educating his staff!  I'm going to have to talk to him about it when I see him next.

I'm feeling a lot better already.  I just had to vent.  I'll let you know how the test come out.

One year ago...

One year ago today I was "prepping" for my BIG surgery; the first surgery after my diagnosis of metastatic neuroendocrine cancer (Carcinoid).  This was a right-hemicolectomy.  The surgeon was planning on a laporascopic surgery (successful).  They go in and take out part of your small intestines.  I remember feeling a bit nervous, as would be expected.  My biggest fear was that they would have to do a colostomy.  I was told by the gastroenterologist that I wouldn't need one but my surgeon said that you just never know for sure until you get in there.  The prep is not fun.  This time, however, I did not have to use the Movi-prep but just take some ducolax pills and drink a two-week supply of miralax over a few hours.  Much less nasty tasting than the Movi-prep.  It seems like a lifetime ago.  My only regret is that I wish I had the knowledge that I have now.  I would have asked more questions about doing it laporascopically vs. open.  I know now that the "open" allows them to "run the bowel, and look for metastases or second primaries, etc.  It's much harder to do it when the surgery is laporascopic.  To this day, I don't know how much he looked around in there.  I know that if there is anything else (and my chances of local recurrence are high), it will be slow-growing so not really urgent.  In fact, I asked my oncologist if I needed to have a colonoscopy again (recommended by gastro doc) and he said "no".   Anything they find will be so small we wouldn't do anything about it yet.  I'm not sure how I really feel about that attitude.  If it's small, it can be removed during the colonoscopy, right?  Also, I still worry about regular colon cancer since both my parents had it and so did my mom's brother.  I know with all my CT scans, it'll show up if something is big enough.  I think.

The surgery went fine.  They took out about a foot of small intestine, my illeol cecal valve, appendix and biopsied a couple of the liver tumors.  A total of 10 tumors out of my small intestines, my appendix was completely occluded by tumor and 11 or 13 lymph notes were all cancer too.  Sounds terrifying and to read my pathology report it is.  It's about 3 pages long!  I'm so very grateful this is a fairly slow-growing cancer.  It is not always.  Sometimes it is very aggressive.  Sometimes it changes from being slow to fast growing.  Crazy disease.

I am grateful for time.  The time I've had this past year to understand my disease better.  Time to enjoy life.  Feeling pretty good most of the time.  It's all about time, isn't it?  How much time do we have?  What to do with our time?  What time is it?

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!