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!