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.