Resources...

I was recently contact by Novartis to see if I was interested in communicating more with them on being a patient advocate and identifying what (we) patients need.  I will keep you updated as to what happens with this new exciting opportunity!

I received an email from them last week with some resources they (Novartis) has developed to help educate patients about NET. I wanted to share this with you.

The first is NET Alliance

The second is Carcinoid.com, it even has a "symptom assessor", which I think is fabulous!

Check out these two great resources for NET cancer patients and their caregivers.

A quick update on me:  I'm still doing well, however, the last few weeks I've been very nauseated.  It comes and goes but has been a companion of sorts everyday.  I have no idea whats up.  I do have an appointment with my GP this week so I'll ask her about it.  Other than than that, I'm really well.

Take care.

Melissa Mathison, Creator of E.T., dies of Neuroendocrine Cancer!

I just received an email that the writer of E.T., Melissa Mathison, died of NET cancer.  The article doesn't say much about her diagnosis so it was a little disappointing to me.  She had an incredible career, which included an Oscar nomination for E.T.  She also wrote The Black Stallion, one of my favorite movies!

If you are interested, here is a link to the article.

Melissa Mathison dies at 65

Scan results--sort of...

I called my cancer clinic Wednesday to see if they had my scan results. I got a call back a couple of hours later. The twat  twit that returned my call wasn't even the nurse! I think it was one of the front desk girls. While I appreciated the prompt return call, I was taken aback by her inability to tell me much. I am frustrated because she said they didn't compare this scan to my last scan because it was done at a different hospital (did I change insurance?) duh… OK, why couldn't they get my scan when they had NO problem comparing my past mammograms from said hospital? I had my last diagnostic mammo at this same hospital that I had my recent scan. I had my past mammo’s at the hospital I had my last scan (a year ago). It makes no sense to me. Probably not to you now either!

So, getting to the results. it sounds like I actually had “lesions” in my liver disappear! Great news so why am I not happy? This twat twit asked me if a millimeter was bigger than a centimeter! Pre-cancer I wouldn't have known either. I asked her how big are these remaining “lesions?” The only one she commented on was 9 mm, which is pretty small. Last scan they were 1.2 cm or smaller. I had around 10 but even my oncologist said we couldn't be sure what they were. Hmmm, I've had a surgeons hands on/in my liver cutting out what he could, ablating some and leaving the rest so I think we know what they are! Anyhoo, she did say she would put the report on my oncologists desk as he wasn't in the office. OK. I seriously doubt I will hear from him, which is fine. I’m good. I’ll get the report one of these days on MyChart. She did mention that I have a fibroid. Argh. I had one removed a year and a half ago (or so) when I went it for a uterine ablation due to continued/heavy bleeding. It hadn't shown up on my scan nor did it show on ultrasound but my OBGYN said it was about the size of my uterus and most likely causing the bleeding. After removing the fibroid, she tried to do the ablation but couldn't because my uterus was done! It said, “nope, no more hands or machines in there.” It did stop my bleeding so I was ok with that. The twat twit told me I should follow-up with my OBGYN. She said it was near in or on my right ovary. Can a fibroid grow on your ovaries? I thought they were just in your uterus. Guess I’ll Dr Google that one. I’m sad I can’t go back to the OBGYN who did my last procedure (due to job and insurance changing).  She was awesome and I really liked her. I felt more compassion and concern from her than I do from any of my other doctors! I haven’t found another one yet. I’ll just wait and see what the report really says.

A long story for what is basically good news! I’m still not happy.

Now it is Friday. I haven't heard from my oncologist and the report it still not in MyChart. I think I will call the hospital today and ask to get a copy of my scan and the report!

An update:  

A quick update on my scan results. Since I am an impatient patient person, I called the hospital and asked if I could get a copy of my scan and the report. They told me it wouldn't be available until Monday so I canned my cancer clinic and asked them if I could swing by and pick up a copy of the written report. It's closer anyway. I just wasn't feeling very confident after talking to the twat twit from their office regarding said results.

Doesn't sound like any of my "lesions" have disappeared! I still have "multiple, small lesions through all lobes of the liver." They measured 3 of them (she made it sound like I only had 3 and didn't give me the correct measurements either). My last scan said they were all 1.2 centimeters or smaller. The biggest now measure 1.4 x 1.6 centimeters, which is not much growth. The other two mentioned are just shy of a centimeter. Nothing to be worried about with Carcinoid like mine, which is slow growing. I do feel better since reading the results "with my own eyes."

I hope everyone has a lovely 3 day weekend (if you are in the States).

Scanxiety...

Google Scanxiety and you will actually get a definition: Anxiety suffered while waiting for the results of an important medical scan.

My definition: Anxiety suffered while waiting to get the scan!

I met with my oncologist yesterday and while everything seems fine, he did say that I should have a scan now rather than wait. I was a little surprised because at our last visit he said I could wait as long as my tumor markers remained "normal." This time he said he wouldn't want me to go longer than a year, which it has been as of Monday.

I am actually relieved to be getting a scan. Even though my markers and other blood work are good, I still want to "see" what is going on, if anything. Better to know that I am still stable than to wonder if I am. I don't trust tumor markers to show everything. However, even with the relief, there is anxiety. You just never know. He also told me I could get it within the next couple of weeks, like no hurry. Then he told the nurse to schedule it "now." NOW? Did he feel something when he palpated my abdomen and just didn't want to say anything? Then I remembered that we discussed getting the scan before he examined me. I'm sure he just told her to go ahead and schedule it now, not meaning urgent but to get it done since I may have had to wait a couple of weeks to get in. Well... that ain't the case. I go in Monday morning at, gulp, 7am! I'm not too thrilled about that but at least I'll be done early and can get to work. This is at a different hospital than I've had my other scans. This is at the hospital where I had my mammogram. Its a nice place and I'm sure it will be fine.

Keep your fingers crossed for good results!

Also, today is World Cancer Day.

Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients

I received this information in another post from a fellow blogger: Cancer....an unexpected journey

Please, click on the link and sign the petition. Change.org

I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect.  I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...

If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed.  You can even email them!
To find your Senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Find your Representative:

http://www.house.gov/representatives/find/

Email President Obama/the White House:

http://www.whitehouse.gov/contact/submit-questions-and-comments

This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.

Speaking of blood tests...

I had my 6 month  tests.  Everything is normal.  My CgA is the same but my pancreastatin has gone up.  It's now at the very top of normal.  (0-135 is the range and mine is 135).  That's a small increase but I'm sure nothing to worry about.

I meet with my oncologist tomorrow.  I have to find out if they really are on my employee's health plan now.  If so, I will switch.  It'll save me some money-I think.  Not much but a little.

Happy New Year!

Happy 2015!

I had one goal for 2014.  I'm not calling it a "resolution" because I had little control over it.  My goal? No major surgery!  Yup.  I made it.  Nothing major in 2014.  Only one minor procedure completely unrelated to cancer.  I'm not sure if I should set any goals for 2015.  I could keep with the same theme and probably be safe.

A few personal milestones in 2014.

• I was laid-off from my job of 3 years after a cancer diagnosis and two surgeries.  This was after my boss told me they would do whatever necessary to support me.  Right.  Lay me off me and take my insurance away unless you sign this "release" that states you won't sue us! Blackmail?  You bet!  Stress?  Nah.  No stress there.
• I got a job after 2 months.  It's a great job.  I like it a lot.  I actually work for an insurance company now.  Ironic?  I think so.  Oh, I also make more money than I did before (but my insurance costs me more and I had to switch around some doctors but not my oncologist).
• Remained stable according to my blood work (last scan was in February, 2014 a few days after I was laid-off my job).  I have not had a scan since. 
• Attended my first Dressage show with my horse Abbie.  We got a second place.  It was a really small show but I was proud of how well she handle the "show" atmosphere.  It was her second show ever.  

Up in 2015: What's next?

• Bloodwork scheduled for next week.  I'm not expecting any changes.  I still feel good with no carcinoid syndrome symptoms.  I do have a lot of headaches but this could be from the Sandostatin or it may be my sinus's.  I'm calling a doctor tomorrow.
• Schedule a scan before July 1st since that's when my insurance deductible kicks in again.  since I've met my deductible, I'd like to get it before I have to reach it again.  I have not (for the first time since diagnosis) met my maximum out-of-pocket.
• Switch insurance to my employee health plan.  My oncologists clinic is now part of our network.  I have no reason not to switch.  I'm very, very excited as this will save me some $$$.
• I'd really like to go to another couple of Dressage shows.  I'm not sure if I can afford it but I'm going to try.
• Go on a sister's trip.  Its been too long!  Even if we keep it domestic.  

Check out the TOP TEN Highlights of the Year for Carcinoid-Neuroendocrine Cancer
from The Carcinoid Foundation website:  https://carcinoid.wordpress.com/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/

1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors
4) Immunotherapy for NETs
5) Global NET Patient Survey (yes, I took part in this)
6) NET Conferences
7) NET Cancer Day
8) ONCLive Features Series on pancreatic Neuroendocrine Tumors
9) Warner Advocacy Award
10) NETs in the News and on Television (link to the BYU men's basketball coach here in Utah w/PNET.


Here's to a safe and healthy 2015!

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!

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!

  

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!

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.

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.

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.

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!

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).

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

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).