Tuesday, December 23, 2014

Merry Christmas!

I've been trying to write  blog post for the past week but never seem to have the time or energy (or enthusiasm) to do it.  It's not that I don't want to, I just don't feel like getting on a computer at the end of the day after work.  I'm actually typing this today while at work!  Bad...

I wanted to wish everyone a very Merry Christmas!

I have a blood draw in early January to check my CgA and pancreastatin.  It's been six months. Depending on those results, we'll decide whether to do a scan or not.  I don't expect my levels to have changed, or if they have, not by much.  I have no symptoms to speak of.  My one concern is that we know these tumors don't usually spew out their hormones that show up in these tests until it's in your liver (usually, depending on the primary tumor site--lung & ovarian tumors are a few of the exceptions) but what if I have tumors outside my liver?  Do we just not worry about those?  I think not but that's the feeling I get (sometimes) from my oncologist.  He did say once that anything else that shows up is going to be so small so what would you do about it?  Cut it out!

These are just the thoughts that stumble go through my mind.  I meet with him in February.

This isn't turning out to be a very positive Christmas post...

I had a moment.  I wanted to add this fantastic post on CURE magazine by one of my favorite bloggers, Tori Tomalia.  A young mother of 3 with Stage IV lung cancer.

http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer


It's the best "recipe" ever!  Thanks Tori!

Blessings all!

Tuesday, November 18, 2014

NET Cancer Day

NET Cancer Day was November 10th.  I'm a bit late in posting anything about it and feel somewhat remiss...

We had some great news coverage on Nov. 10th!  All due to the hard work of a fellow carcinoid cancer patient (or 3).

A year or so ago, we learned that Coach Dave Rose of the BYU (Brigham Young University) men's basketball team was diagnosed with pancreatic neuroendocrine cancer.  One of our support group members knows him and said he would talk to him and see if he could help us get our Governor to declare Nov. 10th as NET Cancer Day in Utah.

Through his efforts and the efforts of another member of our support group, Governor Gary Herbert signed the declaration for Nov. 10th to be recognized as NET Cancer Day in Utah.  We were very excited as last year, he didn't sign the declaration.  Sometimes it takes someone "famous" to call attention to a "cause".  Below is the link to the interview with Coach Rose.  They also interviewed Merlynn, our group leader.  Merlynn and his wife Laurie, know the reporter who came and did the interview.  It's a start on the road to getting more recognition and awareness out there.

Coach Dave Rose has P-NET

On a personal note, I haven't blogged much because there just isn't much to say... this blog was always about my "cancer" journey and not my personal day-to-day life, although I know that they are definitely intertwined in every way.

I don't have any blood work scheduled until January. I meet with my oncologist in February and depending on my tumor markers, I won't have a scan.  I am not sure how I feel about this.  It'll be one year in Feb. since I've had a CT scan.  My oncologist feels that it is better to wait if my markers remain the same (normal).  It'll be better to compare scans done further apart to see if there is progression.  Meaning, it'll be easier to see if there is any progression or not.  I get where he's coming from but I'd also like the peace of mind that a scan showing stable disease brings.  I also want to know if things are progressing in any way.  I know he is mainly concerned with my liver tumors.  I also want to make sure nothing else "pops" up outside the liver.  My lymphnode involvement was pretty heavy according to my original pathology report.  This means the cancer could spread just about anywhere.

A fellow NET cancer patient, who I only know through Facebook, has just been diagnosed with 11 tumors in her brain.  This can and does happen.  I hear many patients say that their oncologist tell them that this type of cancer doesn't spread to the brain.  This is just not true.  I asked her if it was found on a routine scan or if she was having symptoms.  She said she just didn't feel like "herself" and since it was time for her routine scans, she asked for a more extensive scan and this was how the tumors were found.  She is getting radiation to the 3 bigger tumors and the rest are quite small so they will watch those.  I hope the radiation works and kills those tumors.

I've been feeling pretty good.  Fatigue comes and goes.  Some discomfort around my scar from my liver surgery and some cramping/pain in my abdomen.  I also started having hot flashes--I think that's what they are.  It could be flushing but I don't turn red.  I don't really sweat much -- just a little around my hair line and hot flashes are usually "wet" whereas carcinoid flushing is "dry".  I figured if they stopped after my Sandostatin shot then it may be flushing but they didn't.  I had my shot last week and they've continued at the same frequency so I'm pretty sure that they are hot flashes and not carcinoid flushing.  Both suck.

Thursday, September 25, 2014

Mammo, Mammo, Mammogram!

I was a couple of month overdue for my yearly mammogram.  Guys, you may want to stop here. 

So... I've had four "lumpectomies" over the years.  The first one when I was 19!  It was a lipoma (fatty tumor).  Looked like chicken fat and felt like gristle (yes, my surgeon asked me if I wanted to see it and touch it--so of course I did)!  I don't even remember how old I was for number 2.  Maybe my early 20's.  I felt a lump.  Went to my doctor/surgeon.  He said "let's take it out".  I had not had a mammogram ever--yet.  This one wasn't even a tumor at all.  Just a knot of fibrous tissue.  I have extremely fibrous tissue.  Third one... I don't even remember what it was.  Then at 40, I started the FUN yearly mammogram program.  Always, always, they say my breasts are extremely dense and could prevent the detection of a lesion, etc., etc.  So then I had a lump that came on suddenly and was hot and red and hurt like hell.  I was married then.  It just happened that my yearly gyn appointment was in a few days.  My nurse practitioner thought it was either an infection or a cyst.  She sent me in for my first ever diagnostic mammogram.  What fun they are!  They just squish them more and take more pictures.  I then had an ultrasound (since my tissue is so dense--duh).  They confirmed a cyst.  It was already getting smaller and feeling better so when the radiologist asked me if I wanted him to drain it, I was like, um, that's ok!

I think the next year I had another diagnostic mammogram due to my history and it was ok.  Next couple years I just had regular screening mammo's.  I did skip about 3 years after my divorce.  Opps.  Bad me.  On my next mammogram, the tech saw a very tiny suspicious spot and they called me back for the diagnostic mammo.  I wish they would just skip them and go straight to the ultrasound!  Argh.  This "tiny" spot was not normal and they wanted me to have a "wire-assisted biopsy".  Won't ever do that again!  Basically, they do a really intense mammo--numb your boob and insert a HUGE needle that sticks a wire into the spot that needs to be biopsied.  It's too small to see with the naked eye!  I had this done and the pathology report said it was just some abnormal cells--not even the type that can become cancer.  Relief.  However, since that biopsy in 2009, I've had incredible pain in that breast a week or so before my period.  It hurts to even just brush something against my boob!  I've mentioned it to all my doctors and they've never known why. 

A couple weeks ago I had the usual pain.  Even a bit worse then normal.  I was poking around and that's when I thought I felt a lump but I wasn't sure.  I'm pretty lumpy all the time but especially before my period.  I was "exploring" a bit more and found another lump (almost on my nipple) that I had no doubt about.  Fast forward--called and scheduled a mammogram and when I told them I had a lump, they said I'd need a diagnostic.  yeah!  I knew that would happen.  Again, why not just go straight to the ultrasound?  Well, it's because insurance won't pay!  Mammogram showed nothing.  No lumps.  Nada, Zero.  Just extremely dense fibrous tissue (it looks like white spiderwebs on the ultrasound).  The ultrasound tech said she could feel the one lump (the one I wasn't even sure was a lump) but nothing showed on the screen.  She could feel it when the ultrasound wand moved over it.  Weird.  I showed her where the other little pea-sized lump was and she couldn't see anything there either.  The radiologist came in and ran the wand over me and he could also feel the other bigger lump but nada showed.  He said it was most likely just another mass of tissue but that I should watch it.  He did finally find the other smaller, harder lump.  He pushed the wand a lot harder than the tech did.  He said it was a cyst.  Again, watch it. 

Now aren't you glad you checked in today?  No really, I'm not 100% convinced that neither of these are anything to worry about.  I am keeping a close watch feel on them! 

My point here is just that I don't understand why I have to go through the mammogram process when every single one I have say's the same thing.  Too fibrous to see anything! 

Of course, I am also relieved that they didn't find anything suspicious. 

Why the whole history?  I just wanted you to know where I was coming from and why I didn't freak out when I felt something.  My mom also had several lumpectomies over the years.  I'm so much like her it's scary! 

Saturday, September 20, 2014

A time for reflection.

I said goodbye to my dear cousin Dave today.  He passed away last Monday.  54 yrs old.  He and his brother were like my brothers.  He was my sisters age and his brother Steve was my age.  We grew up together.  Our Fathers were brothers.  Our families spent so much time together when we were kids.  Camping, vacations, Holidays-- especially Thanksgiving.  One year it would be at our house and the next it was at theirs.  I loved their dad so much.  I always wished he was my dad (grass is always greener on the other side).

Dave had many demons throughout his life.  He was a skilled and gifted baseball and football player. My uncle, his dad, sadly took his own life due to the incredible amount of pain he was in from Rhumatoid Arthritis.  Dave was the one who found him and I think it really affected him not so good ways.  I'm not going to get into details because it's not my story to tell but he had many challenges throughout the rest of his life.  He did have four beautiful boys and another who was a son of his ex-wifes that he more or less raised.  I learned new things about Dave today.  How much he was loved and how kind and caring he was to everyone.  There was no judgement in Dave.

I had no idea how much pain he was in.  He had bone-on-bone hips.  Both.  He needed surgery years ago.  Everyone talked about how much he feared this surgery.  Something I don't understand but know that we all have our fears and it's not my place to judge others.  Of course, I feel bad that I didn't know how hard a time he was having.  I wish I 'd reached out to him.  He still lived in his mothers house.  I wasn't sure he was still there.  He was living without power or water.  The bank had taken the house back shortly after his mother died (four years ago), and Dave was still there.  I'm so glad he wasn't alone at the end.  He died from pain.  Literally.  Breaks my heart.

I wanted to write this post to talk about something one of the speakers spoke about.  He said that this life is just the beginning (hey, even if you are not religious, this is a good thing to believe).  This life is just a short blip.  We're here for just a moment.  We will be together again with our loved ones.  I sure hope this is true.

Rest in peace Dave Larsen.  You will be missed.  Until we meet again.

Wednesday, August 20, 2014

Onc Appointment

I had my "visit" with my oncologist yesterday.  My very own Dr. W.  (not the esteemed Dr. Woltering, a Carcinoid Specialist).  I do really like my oncologist.  He definitely is not an alarmist.  We had a good visit.  Since all my labs are normal (he was very pleased), we discussed the scan-or-not-to-scan.  His reasoning behind waiting is that when you have a lot of scans closer together, the radiologist will compare the new scan to the last scan and may not notice much difference but if you wait a year (or more) then any growth will be easily noted (I guess we just hope it's not a lot of growth).  I'm not really one to argue with a doctor so since I am feeling well, with minimal to no side-effects, then I am just going to wait another six months.  We will re-do labs and take it from there.  If I have any increase in symptoms, then I'm to call him.  Of course, I'll be in every 4 weeks for my butt dart (Sandostatin shot).  On that note, I had a nurse I have never seen before give me my shot an she was awesome!  She did it super, super slow (I know that can increase the chance of the needle clogging but it didn't) and I didn't feel it at all!  I have very little discomfort.  No leg pain.  Yeah!

Friday, August 8, 2014

Normal is...normal!

It took me 20 minutes to get logged into my blog.  Loooonnnnnnngggg story.  I almost gave up.  Sometimes I feel like "why bother".  Not that many people read my blog--not that I blame them.  I don't have much to say and not much is going on in my cancer-land.  Then I remember those few who have reached out to me and said "thank you--your blog has help me!"  Ah, that is music to my ears and why I started a blog in the first place!  I don't talk much about my day-to-day life because this isn't what this blog is about and is not the purpose of it.  I wanted an easy way to update family and friends on my medical condition and to help other suffering with this or any type of cancer.

So, getting back to my post title, Normal...is normal!  All my bio-markers (or tumor markers) came back NORMAL!  Awesome news right?  Well then why do I feel so unsettled?  I guess because deep down inside I really need that scan, that peek inside, to tell me everything is OK.  I am still on the fence about asking for a scan. I want one but I also think that everything is fine.  Maybe better than fine.  Maybe my little tumors decided to vacate the property (of my liver) and disa-fucking-peer!  That would be funtastic!


This is what I've decided (for the moment anyway):

  1. I am not going to worry about it.  I will see what my oncologist says.  
  2. I will voice my concerns (hey, nothing growing in the liver but what about elsewhere? Even though I know what his answer will be--which is "whatever is there is small so what are you going to do about it?)...
  3. If I wait, how much longer do we wait?  6 months?  3?  4? 5?
That's about it.  No major issues really.  Oh, my heart palpitations have been going crazy the last week or so--until today.  Today they have not bothered me at all.  Weird.  I don't know what they are related too.  If they continue, I will mention it to my oncologist.  He said if they came back he would send me to a cardiologist.

I've found a new GP.  I have an appointment next week.  I just need my thyroid meds refilled and I forgot to have my OBGYN check it before my insurance changed.  I HATE going to a new doctor just for that but I saw another doctor in this practice years and years ago--he's no longer there (I was sad cause when I found his name on my insurance I was very happy).  I really liked this doc.  This was about ten years ago. I remember his nurse was in with me before the doctor came in and when she saw that both my parents had colon cancer, she told me I MUST go get a colonoscopy NOW.  I wonder if I had, would they have found my cancer then while it was still small and hadn't spread?  Could I have been CURED?  I will never know.... and it doesn't really matter now anyway.  

So, this new doc.  I am going to ask him for my complete thyroid panel, Hydroxy 25 Vit. D test and I will talk to him about my heart palps but my guess is once he see's that I have carcinoid, he won't want to deal with anything outside the normal stuff. Maybe my blood pressure too--it's a little higher than it was pre-cancer.  Used to be low and now I'm definitely in the pre-hypertension to hypertension range. I also need to go have my yearly mammogram.  I'm about a month past due.  I dont' have anyone to send the results to so I decided to wait.  I will get this new doc to order it for me.  I'm not sure with my new insurance where I can go.  I hope I can go to the same place but its doubtful--they don't play well with outside insurance.  I just don't know how they compare them if they don't have them, you know?  I'm not worried about it.  I'd skip it this year but I'm so lumpy I don't think I'd know if I had a "new" lump to be concerned about.  

My results of the Neurokinin A test was..... 20!  Remember, less than 50 is the desirable range!!!  My Pancreastatin was also in the normal range!  It was a little above normal last time so it's come down even more!  This is such good news all around!  

Thanks for reading!

  

Monday, July 28, 2014

A quick update

I haven't posted anything in a while because there isn't much to tell you about.  I did get some blood work done last week and so far, all is good.  CBC and blood chemistry.  Liver function tests included in the blood chemistry and those are all normal!  I haven't seen the CgA (tumor marker) results yet but it should be available this week sometime.  My Pancreastatin and (for the first time) Neurokinin A was sent to ISI in California so those take 3 weeks to come back.  I probably won't know those results until I meet with Dr. Whisenant on the 19th.  I might be able to get the results through LabCorp. but I'm very frustrated with their website right now.  I've tried to log-in all morning but it wont' take my password and when I reset it, it resets my Microsoft password. Weird.  Frustrating.  I give up!

I did get my appeal approved for the last CgA test I had done through my old insurance.  Talk about stupid. They paid $22 of the $236 charge, which is the "allowed" and "contracted" amount.  I owe nothing.  So, if no insurance, a simple blood test costs over $200!  Crazy.  At least with BCBS, I don't have to worry about pre-authorization for blood tests!  Duh.

I am still not sure about NOT having a 6 month scan.  Dr. Whisenant said he didn't think I needed one unless by tumor markers increased but that it was up to me.  I know I probably don't need one but I'd still like to know what is going on. I know it won't make any difference treatment-wise unless I had a lot of progression or new tumors (very unlikely) and we should see that in the tumor marker blood tests first.  I have read other patients stories about having normal blood tests and seeing tumor progression anyway so I still worry.  I guess I will talk to the doc about it when I see him.  It's my life after all (and my money too)!

If you are curious about Neurokinin A (NKA), it is more of a prognostic blood marker test.  I found this in a study paper:

Turner has shown in a retrospective study using a clinical
database comprising 117 midgut carcinoid patients that NKA
is an excellent prognostic indicator. In the patients who
presented with NKA > 50 ng/l (45 pmol/l) survival at 5 years
was 18%, whereas in the group who presented with NKA
levels lower than this threshold the survival at 5 years was
70% 


I think the prognosis is a bit better than listed above.  As much as 84% at 5 years for the <50 group.  I wanted this test run a long time ago but didn't push for it.  I didn't have to push at all. I just asked him (Dr.) to do it and he did.  It'll be interesting to see what my results are.  Although I don't put much stock in just numbers and statistics.  We are all so different.  Every patients disease seems to take a different clinical course.  Its one of the reasons it's so hard to treat.  








Wednesday, June 18, 2014

2nd "Cancerversary"!

Well, today its been two years since I heard the life-altering news, "you have cancer"!  Wow.  What a ride...


I wasn't even going to post anything more about it. I'm just feeling "blah".  Not really into it nor do I feel like it's a time to celebrate.  I'll never be "cancer-free" again.  I don't know how long I have.  Hopefully years before progression necessitates any intervention.  I've been stable since my liver surgery in Feb. 2013.  16 months.  That is GREAT!  (See, I'm trying to be positive.)

So many have died recently.  One young man, 6 months after diagnosis.  Another 5 years. Another 8 1/2.  Lindsey 3 years.  You just don't know how long you've got.  No one does but we're standing in the middle of the road waiting for that bus to hit.  All I hope for is better treatment options by the time I need something!

Here's to another 2 years with the good quality of life that I have right now!  Here's a "toast" to all those making this journey with me!


Wednesday, June 11, 2014

Almost Two Years!

Approaching my two year "Cancerversary"...

I can't believe its almost been two years since I was diagnosed with NET cancer (neuroendocrine carcinoma)! My thoughts have been going back to that time and it's funny interesting how everything is "before" diagnosis or "after."  Before surgery #1 or after.  Between Surgery #1 and #2...  you get my drift?

During a very long drive home from my sisters in Southern Utah (fighting the wind all the way), I was thinking about that day, the day after my colonoscopy, when I was walking out of the CT scan room and when ignorance really was "bliss".  I wonder what the technician was thinking?  Was he feeling sorry for me?  I know he saw all the tumors in my liver!  Was he thinking "oh, she's a dead woman walking?"  I probably would have though it had I known then.  I'm sure that most people, with that many tumors, don't have a very good prognosis.  I haven't been back to that particular hospital since that first scan or I would ask him.  He was very nice.  An old "hippie" looking guy (probably not that old).  I remember his kindness, his easy "banter" when he took me back to the room and got me all set- up.  I don't remember being nervous or even worried.  I'd had a CT scan before so I remembered the "wet" feeling when they inject the contrast.  I'd sat in the waiting room for about two hours drinking the iodine contrast and had to pee so bad (I couldn't remember if I was supposed to go), and when he asked if I need to use the restroom before we got started I was like, YES!!!

I just went back and read my very first blog post, which describes that first CT Scan. Made me laugh (a little).  Who knew where I'd be almost two years later... hear I am, still, and grateful to be alive and doing so well.  (I'd still like to know what he was thinking as he walked me out.)

So I'm trying hard to rediscover my "bliss". Maybe not the ignorance part--I'd rather be informed of what is going on but I need some "bliss" to come back in my life.  I keep saying I'm going to start exercising again and I really think it's time to get off the couch and just start doing it!  Yes I am tired, I have no energy but perhaps if I can just get started with something I will feel better!



It'll be two years since "the call that changed my life" on June 18th.  Two years since my first surgery on July 2nd and 16 months since liver surgery on June 21st.  Back in January I stated that my "goal" for 2014 was NO surgery for the year!  So far, so good.




Friday, June 6, 2014

Nurse reveals the top 5 regrets people make on their deathbed -



Karenstan.net recently posted an article (written by a nurse!) that’s resonating with readers everywhere…and especially with me!  I feel I'm one of the lucky ones who have been given some time to find what is most important to me. I think everyone should read this and really think about what is important (to them) in life and what would you regret?  These blew me away!  

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realize that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Manydeveloped illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way,you win.

4. I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again. When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness

- See more at: http://www.karenstan.net/2013/11/11/nurse-reveals-top-5-regrets-people-make-deathbed/#sthash.qhWPOj9s.dpuf

Tuesday, May 27, 2014

We lost Lindsey...

On Sunday I was at brunch with a friend. I checked my Facebook while waiting for our food and saw a post by another Carcinoid/NET patient that said Lindsey Miller of iamaliver.wordpress.com had passed away!  I was stunned.  Literally stunned. I couldn't write anything until today. I was so sad.  Sad for her and her family and friends.  She died one and one half day after having a "commitment" ceremony with the love of her life, Jeff, while in the hospital.  Lindsey hadn't blogged much lately. I was hoping it was because she was finding her new "normal".  Enjoying her new apartment and soft new comforter (from her blog post Jan.27, 2014).

I had followed Lindsey's blog (link on the right) since I saw her YouTube video of her proposing a date with the actor, Joseph Gordon-Levitt after seeing the movie 50/50.  Lindsey was only 28 years old! She was diagnosed in 2010 at the young, young, age of 25.

When asked by Inspire why she called herself a "liver" and her blog "i am a liver", this is what she said.

"The most common word terms that are used to describe people who have or have had cancer are “patient” or “survivor.” You don’t hear as often of people having chronic cancer--at least, I don’t. I am both a patient and a survivor, but I don’t want to call myself a patient forever because that sounds exhausting. And I don’t necessary feel comfortable with the term “survivor” either. I have been through chemo and surgery, and while I’ve survived through them, there’s no end in sight, so I don’t attach the same meaning to saying that I’m a survivor. So I prefer to say I’m a “liver,” as I’m just living my life with disease."


I, for one, will miss Lindsey.  Rest in Peace Lindsey Miller.  Below is the link to her video on YouTube.

Friday, May 9, 2014

So tired...

I don't know what is going on... I know that most cancer patients deal with fatigue--mainly from chemo and radiation treatment (which I do not get nor have I gotten), but I have been so very tired these past two weeks.  It's almost as bad as when I was on Metropolol for my heart palps (which I quit taking do to the level of fatigue I was experiencing)!  Its almost as bad but I don't feel like my head is in a fish bowl.  Just super fatigued.  It's just a feeling of total exhaustion!

I don't have any scheduled blood draws until July.  I think that if I don't feel any better, I'll call my oncologist's office before my next Sandostatin shot and see if they will check my blood when I come in.  I don't know what else to do. I did tell the nurse at my last visit, how tired I was.  She always asks but doesn't DO anything about it or try too!  I sometimes feel that us "NOIDS" are not taken that seriously.  Someone stated that we're just a "speck" on their calendar!

I am "between" doctors for anything else since my COBRA insurance ran out and my new insurance kicked in but I haven't found a new GP yet.  I'm not going to try and get into someone new for just fatigue (except I did forget about my thyroid and will run out of pills in two more months--sigh).

I do worry that this is my "cancer" growing.  I've read on other blogs that that was the first sign of recurrence or progression--extreme fatigue!  I don't have any other symptoms though.  No new ones anyway!

Wednesday, April 23, 2014

Compassionate Allowance Info.

If you are diagnosed with Carcinoid Cancer with distant metastases or are inoperable/unresectable or recurrent, you can file for disability.  This site will list the conditions allowed under the CAL (compassionate allowances).

http://www.socialsecurity.gov/compassionateallowances/

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.
I found my carcinoid cancer listed under the Small Intestinal Cancer.

Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent

http://www.ssa.gov/compassionateallowances/conditions.htm

From another blogger:

"I keep copies of all my medical records and took the entire packet to the social security office. This is not required and social security will request all your records. However, I have found that things go much quicker when I do this. I also found the Social Security website very user friendly and the application not very difficult to complete".

I have not filed for disability.  Sometimes I wish I had when I was first diagnosed.  However, I am well enough to continue working and I plan to for as long as I can.  I know that one day I will probably have to file for disability so I try to keep up with the latest info. on how to get it approved quickly.  No one wants to wait months and months to get approved!  I also don't think there is any reason to hire an attorney to do it for you UNLESS you are denied and need to file an appeal!

Just trying to spread the word.  If anyone knows of any other helpful ideas to file and be approved quickly, let me know!  Also, if you know I am mistaken on any of the above, please let me know that too!  I don't want to be giving false information.

Thursday, April 17, 2014

Checking in.



Another fellow blogger posted this quote from Atticus about courage:

"knowing you're licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do."

It brings up some serious questions and emotions. My sister was telling me about a co-workers brother-in-law who was diagnosed with stage IV colon cancer and flew to MD Anderson in Houston for some pretty intensive treatment. She was like, why bother? He's going to die anyway. Why put yourself through that? Well, my response to that was (and is) "you don't know what you would do until you are faced with certain death". It really made me pause and wonder... what length will I go to when things get bad? What am I willing to put my body through? Right now, I'd say ANYTHING I have to. I probably won't win but I'm going to do whatever I can to beat this cancer down for as long as I can. Of course, with my cancer, things are not as dire as with most stage IV cancers. Carcinoid/NET Cancer is usually slow growing but it is often diagnosed so late that things can move quickly. Walking with Jane, an excellent website, is one example. Jane died four months after being diagnosed. She had symptoms for 30 years! Sometimes, Carcinoid/NET Cancer is very aggressive and moves quickly. So many different variables that it's hard to explain to people. When they ask me how I am, I say "stable". No growth. Good blood work. I don't think, even then, that they really "get it". Not unless you are a fellow cancer survivor or caregiver.

I do know that I don't want to become a burden to my family. I don't have kids, I don't have a husband. All I have are my two sisters. I don't think it's really fair to expect them to take care of me in my final years/months/days. I don't know where this path is going to lead me. Of course, I could get hit by that proverbial bus next week. Any of us could. I don't live day-to-day. I don't live in-the moment. I try but I just can't. I dream. I hope and pray for good things to come my way. I think that ten years from now there will be better treatments. More successful treatments. I don't pray for a cure. I don't think that will happen anytime soon. I do know that better treatment options for many types of cancer are coming.

On another note, I have a major decision I need to make about my health insurance. I'm now thinking that maybe I should switch to a different carrier. It would require me to see a different oncologist and a different cancer center. An excellent center that does a lot of research and clinical trails, however, they don't have anything specifically for carcinoid/net cancer. There just aren't that many of us. This is the problem. Raising funds for a rare cancer when the more well-known insidious cancers such as breast and colon get more money. Of course, when thousands die each year it creates more awareness than the rare cancers which claim a couple hundred or thousand each year. I've seen one mention of 33 Carcinoid/NET cancer patients die each day. A little over 12,000 a year. Sounds like a lot to me but when you put it with breast or colon, it is a much smaller number. Another under-funded cancer is lung. It's one of the biggest killers and doesn't get the funds because of the stigma associated with it. I'm a huge proponent for lung cancer research. No one deserves cancer--not even if you smoke or smoked. My mom had lung cancer. She smoked but had quit years and years before her diagnosis. She had surgery and treatment. She was a survivor (of the lung cancer but died from metastatic gastrointestinal cancer). Too many are not (survivor's). Too many young people are diagnosed with lung cancer that have never smoked or were casual smokers (again, not that it matters).  So if you wonder why I post about lung cancer, this is why!

I think I have decided to switch my insurance to my employer.  It'll be weird being covered by my own employer but I know the claims processors rarely look at the name.. we're just a number!  I still think they might notice when a $17,000 claim comes in!  Yikes.  Oh well.  They can't discriminate, right?  Hahaha.  I already know how that works.  Sigh.



Monday, March 31, 2014

A quickie!

I've been trying to get here to give a quick update for a week!  This is not about cancer... well, not really.

I always think of good post topics when I'm laying in bed trying to go to sleep--then I can't remember them in much detail the next day.

I just started my third week at my new job.  3rd week!  Crazy how time goes by so fast (too fast).  Last week was very stressful/busy.  I'm working on budget stuff and it took two full days and I'm still not done. Numbers aren't my forte.

I've been feeling pretty good physically.  Some big "D" but I think it was mostly from stress.  I think I mentioned that my doc gave me some short-acting octreotide in case I need it. I haven't tried it yet.  The nurse told me how to give myself a shot but she didn't actually do it.  I'm a little hesitant but know its really not a big deal.

I go in tomorrow for my shot.  I'm working the "early" shift so I get off at 4.  I go in around 4:30 for my shots so this way I won't have to tell them (ever) that I have to go get a shot every 28 days!  I'm hoping to stay healthy enough to go a couple of years (at least) without telling my work anything.  Of course, I'm working for a Health Plan so it seems a little weird to have such a major disease and be working basically for an insurance company.  Right now, I've picked their alternate plan (BCBS) and not their own because I would have to change oncologists and the cancer clinic that I go too.  My current one is much, much closer.  If I'd known I would be getting off early, I could have switched and I still can since open enrollment is in May.  It is half the cost (to me) for their plan than the BCBS plan.

On a very sad note, a fellow blogger, Stage IV, Jessica Rice, passed away.  She was 33. She had lung cancer.  Just too, too young to die!

Thursday, March 13, 2014

I'm Baaaaaaaaaack!

I deleted my blog last week or so because I was worried about prospective employers searching my name and finding my blog.  I'm mean seriously, who would hire a cancer patient knowingly?  Well, some might but not many.  If you are a cancer patient that was hired by a company that knew you had cancer, please let me know who your employer is (or was)!

I've put her back up since I have been offered a position with a very large company!  The pay is more than I was making (yeah) but I may have to switch up some doctors.  Insurance is one of the Cancer Patients more important benefits.  This new company has two options and one would make my cancer care center change along with oncologist and everything.  It would be inconvenient for me to travel to this other cancer center and not miss a lot of work time just to get my Sandostatin shot every 28 days.  Their other option, I believe, would allow me to keep the same oncologist and center.  I checked the insurance website and it brought up my oncologist but when I called the oncologists office, they weren't sure if they took it. I've got to be 100% sure because this option will cost me about double per month what the other coverage would.  My OBGYN doesn't participate in either plan :(.  Sad.

My first day is Monday for new hire orientation.  It's going to be a long day.  I've been off work for 6 weeks now.  Sleeping 10-11 hours a night has been great!  I'm not fatigued at all.  I wonder why?  I'm going to try to go to bed early and get up early to prepare myself for the change.

On another note, when I went in for my shot last week, the Patient Advocate called me into her office to tell me about a new patient co-pay plan that Novartis is offering us Sando users that have commercial insurance to help with their deductible and out-of-pocket expenses.  It requires you to sign-up and then you only pay $25 for the shot and no out-of-pocket expense!  My $3,000 out-of-pocket expense has all gone towards my shots!  Also, it will be retroactive back to January 1st!  I'm not sure exactly how much they are going to pay but anything will help!  If you are on Sandostatin and have commercial insurance (through an employer or are self-insured--no Medicaid or Medicare), talk to your Patient Advocate at your cancer center or hospital and get signed up for it!  We all pay different amounts for our Sando so I think this is a great program that Novartis is starting.


Sunday, March 2, 2014

Mabel is still here!

Scan results are in... I am still stable-Mabel!   I was not impressed with the written report.  It was very short. Sometimes they are much more detailed and this one was definitely not.  It said tumors seemed to remain the same.  No new dominant lesions.  Everything else was "normal".  I do still have a "cyst" on my right ovary.  It is a little bit bigger.  The last scan report said it was in the "right adnexa" which is the area of the ovaries and fallopian tubes but it did not say it was on the ovary. This report says ovary.  So who knows?  Maybe it is different.  But a cyst is just a cyst.  I'm not concerned.

I see my oncologist on Tuesday.  I'm expecting a short and sweet visit and then my Sando shot.  I have been having a lot of diarrhea the past week or so.  I don't know if it is stress related or my Sandostatin wearing off.  I've not had a problem with that happening before but I know it does loose effectiveness over time.

I've had several interviews.  That is major stress.  I have another one tomorrow and then one on Tuesday morning.  Keep your fingers crossed.  The one on Tuesday is a second interview and probably the one I'd really like to get.

Take care!

Wednesday, February 12, 2014

I wasn't going to say anything but...

I wrote a post when this happened but decided not to publish it for legal reasons.  Here is a re-written post:

I got laid-off from my job on January 31st.  I was surprised they actually did this to me but they have covered their asses and I don't see any recourse but to lay down and die cry.  I will be ok for this month and I do have insurance for a few more months (unless I get another job or pick-up COBRA).  I'm still waiting for my COBRA paperwork so I don't know how much that will cost me. 

Wow, I don't even know what to say about how I feel.  I feel like they are putting a nail (or two) in my coffin.  The last thing I need is more STRESS in my life right now!  I feel strongly that stress is not good for cancer patients and I know it's not good for Carcinoid Cancer patients as it leads to high bp, rapid heart rate, flushing, diarrhea---all those lovely carcinoid syndrome symptoms.  I think cancer feeds off stress (and not sugar as some believe-I may do an entire post on that soon).  I am looking for a job.  I had one interview already and I think it went well.  It would be a good job, with insurance starting from day one.  I haven't heard anything back yet but they said it might be a couple of weeks.  I also met with a placement agency and they thought they had a couple of positions that might be a good fit.

What do you tell a new employer about needing time off for a CT Scan and/or doctors appointments?  I know you don't legally have to tell them anything before you are hired and not much after.  Part of me just wants to sit this month out and really look for a job next month after my scan on the 27th and Dr.'s appointment on the 4th.  Then I wouldn't really have to worry about it except for my monthly shot. Or do I tell them when I'm hired that "Hey, by the way, I have fuckin cancer!  Still want me? 

I just really didn't need this right now!  Argh....

I have had some really down moments (OK, days) but I'm trying.  I do not believe that everything happens for a reason.  That is bullshit (to me).  Things just happen.  Period.  In my interview, the girl asked me if I thought I was a "lucky" person.  I almost laughed about that one.  Really?  I should have been honest and said yup, I'm so lucky I got cancer!  I really don't believe in luck.  I think we make our own "luck" if that is what you want to call it.  I guess she was trying to get a feel for my attitude.  I'm pretty good at hiding my real attitude, which isn't always that positive.  There, I said it.  I am not a positive person.  People tell me I am so positive and strong and blah, blah, blah, but I am not.

I am very anxious about things (money mostly).  Hey, I just met my $3,000 out-of-pocket and now if I get a new job with new insurance it'll start all over again (and may be even more $$$)!  Yippee!  I owe taxes that if I don't pay off at least one year -- they will put a tax lien on my credit.  Found that one out today.  It's not a lot of money and I'm going to pay it but I really could have used that money for bills, etc.  It just never ends.  Sometimes I feel "why bother"?   

Tuesday, January 28, 2014

One month and counting down...

One month until my CT scan!  Seems weird to be counting down to a scan!  I am somewhat regretting my decision to wait 7 months between scans instead of the usual 6 months!  I've said before that this is the longest I've gone between scans since my diagnosis.  Most have been no more than 4 months apart. That was, in part, due to liver surgery and the issue I had after.   See my post from 4/5/2013.

My scan is scheduled for the end of Feb. with my Oncologist appointment the following week.  I have always seen my reports before my doctor (except for my very first scan--I didn't know I could get the written report online).  I've never really felt Scanxiety before but I am feeling it now.  Even though I tell myself that nothing will have changed, this is a slow-growing cancer, I still have that anxiety of all the "what if".  What if they've grown?  What if there are new tumors in my liver? What if they've taken over my liver? What if they are now popping up everywhere?  I know that this is very unlikely.  I will genuinely be surprised if I am not still dancing with Stable Mable!  Even with that said, I am still going to worry.

I will be getting my blood work done next week so if anything is truly amiss, it should show up there.  I don't have to wait long for most of my test results.  Only that damn pancreastatin that takes 3 weeks to get back! That is why I'm getting it so early.  I want the results to be back before I see my doc!

Now I'm throwing another wrench into the "plan".  There is a clinical trial at NIH (National Institute of Health) in Bethesda, MD for the Gallaim 68 Dotatate Pet/CT Scan.  I am not sure that getting the Gallium scan right now would be that helpful (unless there is new stuff going on) but you go back every year for five years for a follow-up scan and this could be VERY helpful.  The Gallium scan is so much better at "seeing" NET tumors than either CT, MRI, or Octreotide Scans are.  It is not approved by the FDA yet so most patients end up paying the costs themselves to get this scan (anywhere from $4,000-$6,000.  This trial is free!  The only thing I would have to pay for is my first flight out and back.  Returning flights are reimbursed. I can stay in-patient and not pay for room or board.

Clinical Trial at NIH

If I'm accepted into the trial, depending on when they would want me there, I will have to have an octreotide scan, CT scan and then the Gallium scan (unless my last octreotide and CT scan is within six weeks and it's been 20 months since my O-scan and you know how long since my CT scan).  That would be a lot of scans and radiation in a very short amount of time.  I think you stay for 3 or 4 days.

I'm gathering my info. to send in to see if they will accept me.  I am not sure I would be able to participate though since I have no money to pay for the initial flight out and back. It's looking like between $500-$1,000 for a round trip ticket. Argh.  I just figure I'll worry about that hurdle after I get accepted.  I don't know if I should talk to my doc about it.  I'm sure he'd be 100% for it since it would save the insurance co. money on my next scan!  I could skip my Feb. scan if they wanted me out there before that -- they will send him all results.  I just honestly don't know what to do.  I would be going alone and that just sounds crappy.  I mean, I wouldn't want to make someone sit around for four days being bored to death while I'm getting scanned. I am the only one who can stay in the hospital.  You can't have anyone stay with you.  It just sounds so lonely though.  Of course, my ex lives nearby so I could always ask him if he wanted to come and see me.  Show me the sites. You can leave the hospital.  You don't have to stay 24 hours a day.

The only thing I don't have is my surgery notes.  I think I can get them from my oncologist.  I know they have EVERYTHING in my file...  I'm going to ask when I go in for my blood draw and shot.  I'll keep you posted.



Wednesday, January 8, 2014

Vitamin D Toxicity--Question for the Doctor?

I was going to call this post title "Update that really isn't" but then decided to just stick with an interesting question that I had come up today.

I went in yesterday for my butt dart  Sandostatin shot.  This is #19 (but who;s counting, right)?  I had to wait a while for them to call my insurance and get it approved!  I guess they have to do this every year.  At first I was a tad bit miffed.  I thought, why can't they do this BEFORE I come in?  Of course, the main reason would be that  they don't have my chart in front of them until I get there and did I really care if I had to wait a few extra minutes?  Well, NO, I didn't.  I was waiting for the front desk girl to get my scan scheduled anyway so I really was in no hurry.  I had no doubt it would be approved as this is pretty much the only STANDARD OF CARE for Carcinoid Cancer.  The nurse came by and said, we got the OK so I'll mix it up now.  It shouldn't be more than five minutes.  Hmmm.  Isn't is supposed to sit for 15 minutes no matter what???  She came back and got me about five minutes later.  When I was following her back she told me that she had learned a new "trick" on getting it to mix up better/faster.  She said if she breaks up the powder before adding the liquid it mixes more quickly.  OK then.  Guess we'll see.  It was actually a pretty painless shot and I'm not even very sore today.   Maybe it was her new mixing technique or maybe it is just luck.

Other than my blood pressure being high, everything else was ok.  They only weigh me, take my blood pressure and check O2 levels when I go in for my shots.  No blood work is done.

I did ask the nurse to ask Dr. W. about my 3 month tumor marker tests since he did not give me orders for them at our last appointment.  She said that they didn't need any orders.  They could just do whatever I normally have done the next time I come in for my shot.  Hmm. Cool.  The only problem is I am supposed to FAST for one of the blood tests and I usually go in for my shots late in the day.  That was easy to remedy. I rescheduled my shot for 8:30am and they will draw my blood at that time.  I had to run back and ask sweet Evelyn, the MA (medical assistant), to make sure she had a z-tube for me.  She said she'd have to order one (she came and got my chart while I was still waiting for my shot so I know she did follow through).  My biggest concern is that when I get there, they will not know what blood test to do!  I know i can tell them but I'm guessing they would actually need orders from the doctor.  We will see (that seems to be a theme running in today's post).

Getting back to the title of my post today, Vitamin D and possible toxicity?  I read an article today on Livestrong titled 9 Ways to Help Avoid Vitamin D Deficiency:  http://www.livestrong.com/slideshow/1009221-15-ways-vitamin-d-winter/?utm_source=newsletter&utm_medium=email&utm_campaign=0108#slide=10

I have read that Carcinoid patients are often Vit. D deficient.  I believe the causes are from Sandostatin, which can cause malabsorbsion, and from the intestinal surgery and cancer itself.  I've been taking a Vitamin D3 supplement since after my first surgery back in July 2012.  What caught my attention was the slide #10 about supplements.

While vitamin D consumed through food isn't known to cause toxicity, going overboard on supplemental vitamin D can lead to serious complications, such as heart, arterial and kidney problems.

This gave me pause because for the last year my creatinine clearance has steadily declined.  I did ask my oncologist if I should be concerned as he had never mentioned it.  He seemed surprised that is was below normal and thought it would be higher.  He explained how they determine that number (which is an estimate) and said he wasn't worried about it.  I thought I had mentioned this in an earlier post but I couldn't find it so perhaps I didn't.  If I did, sorry for the repeat!  When I read the article and the part about too much vitamin D causing possible kidney problems it made me wonder...  could I be taking too much?  The only way to find out is by a blood test called 25-hydroxy vitamin D test.  I think I am going to request this test.  I have my yearly appointment with my OBGYN tomorrow and she should have me get a thyroid test so I might as well do this one too.  I'm pretty sure she'll be on board with it.  I may ask for the serotonin to be done again too (she did my last one--my oncologist does not test this).

A week ago I got bucked off my horse.  I have not come off a horse in at least 6 years (I can't even remember the last time).  She has never bucked with me like she did this day.  I pretty much decided to bail off because I felt it was only going to get worse.  Luckily, no one else was in the arena and the dirt is fairly deep (but not so soft).  I landed on my right hip and back.  I wasn't hurt (except for my pride) and nothing was broken!  I did end up with a very sore mid-back and hip.  It has been getting better except I am now sore to the touch around my ribs in my back.  I think I probably bruised them.  I'm just glad I didn't break anything and that I didn't hurt my neck!  In fact, it hasn't hurt at all, which is pretty amazing considering how bad it is (degenerative disk disease).