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.

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!

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!