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!

  

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.  

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!

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.

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

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."

Here is the link to that interview http://www.inspire.com/John2/journal/the-inspire-q-and-a-inspire-talks-with-lindsey-miller/

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

https://www.youtube.com/watch?v=Qa8X56fKzYQ

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!