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!

I wasn't going to say anything but...

I wrote a post when this happened but decided not to publish it for legal reasons.  Here is a re-written post:

I got laid-off from my job on January 31st.  I was surprised they actually did this to me but they have covered their asses and I don't see any recourse but to lay down and die cry.  I will be ok for this month and I do have insurance for a few more months (unless I get another job or pick-up COBRA).  I'm still waiting for my COBRA paperwork so I don't know how much that will cost me. 

Wow, I don't even know what to say about how I feel.  I feel like they are putting a nail (or two) in my coffin.  The last thing I need is more STRESS in my life right now!  I feel strongly that stress is not good for cancer patients and I know it's not good for Carcinoid Cancer patients as it leads to high bp, rapid heart rate, flushing, diarrhea---all those lovely carcinoid syndrome symptoms.  I think cancer feeds off stress (and not sugar as some believe-I may do an entire post on that soon).  I am looking for a job.  I had one interview already and I think it went well.  It would be a good job, with insurance starting from day one.  I haven't heard anything back yet but they said it might be a couple of weeks.  I also met with a placement agency and they thought they had a couple of positions that might be a good fit.

What do you tell a new employer about needing time off for a CT Scan and/or doctors appointments?  I know you don't legally have to tell them anything before you are hired and not much after.  Part of me just wants to sit this month out and really look for a job next month after my scan on the 27th and Dr.'s appointment on the 4th.  Then I wouldn't really have to worry about it except for my monthly shot. Or do I tell them when I'm hired that "Hey, by the way, I have fuckin cancer!  Still want me? 

I just really didn't need this right now!  Argh....

I have had some really down moments (OK, days) but I'm trying.  I do not believe that everything happens for a reason.  That is bullshit (to me).  Things just happen.  Period.  In my interview, the girl asked me if I thought I was a "lucky" person.  I almost laughed about that one.  Really?  I should have been honest and said yup, I'm so lucky I got cancer!  I really don't believe in luck.  I think we make our own "luck" if that is what you want to call it.  I guess she was trying to get a feel for my attitude.  I'm pretty good at hiding my real attitude, which isn't always that positive.  There, I said it.  I am not a positive person.  People tell me I am so positive and strong and blah, blah, blah, but I am not.

I am very anxious about things (money mostly).  Hey, I just met my $3,000 out-of-pocket and now if I get a new job with new insurance it'll start all over again (and may be even more $$$)!  Yippee!  I owe taxes that if I don't pay off at least one year -- they will put a tax lien on my credit.  Found that one out today.  It's not a lot of money and I'm going to pay it but I really could have used that money for bills, etc.  It just never ends.  Sometimes I feel "why bother"?   

One month and counting down...

One month until my CT scan!  Seems weird to be counting down to a scan!  I am somewhat regretting my decision to wait 7 months between scans instead of the usual 6 months!  I've said before that this is the longest I've gone between scans since my diagnosis.  Most have been no more than 4 months apart. That was, in part, due to liver surgery and the issue I had after.   See my post from 4/5/2013.

My scan is scheduled for the end of Feb. with my Oncologist appointment the following week.  I have always seen my reports before my doctor (except for my very first scan--I didn't know I could get the written report online).  I've never really felt Scanxiety before but I am feeling it now.  Even though I tell myself that nothing will have changed, this is a slow-growing cancer, I still have that anxiety of all the "what if".  What if they've grown?  What if there are new tumors in my liver? What if they've taken over my liver? What if they are now popping up everywhere?  I know that this is very unlikely.  I will genuinely be surprised if I am not still dancing with Stable Mable!  Even with that said, I am still going to worry.

I will be getting my blood work done next week so if anything is truly amiss, it should show up there.  I don't have to wait long for most of my test results.  Only that damn pancreastatin that takes 3 weeks to get back! That is why I'm getting it so early.  I want the results to be back before I see my doc!

Now I'm throwing another wrench into the "plan".  There is a clinical trial at NIH (National Institute of Health) in Bethesda, MD for the Gallaim 68 Dotatate Pet/CT Scan.  I am not sure that getting the Gallium scan right now would be that helpful (unless there is new stuff going on) but you go back every year for five years for a follow-up scan and this could be VERY helpful.  The Gallium scan is so much better at "seeing" NET tumors than either CT, MRI, or Octreotide Scans are.  It is not approved by the FDA yet so most patients end up paying the costs themselves to get this scan (anywhere from $4,000-$6,000.  This trial is free!  The only thing I would have to pay for is my first flight out and back.  Returning flights are reimbursed. I can stay in-patient and not pay for room or board.

Clinical Trial at NIH

If I'm accepted into the trial, depending on when they would want me there, I will have to have an octreotide scan, CT scan and then the Gallium scan (unless my last octreotide and CT scan is within six weeks and it's been 20 months since my O-scan and you know how long since my CT scan).  That would be a lot of scans and radiation in a very short amount of time.  I think you stay for 3 or 4 days.

I'm gathering my info. to send in to see if they will accept me.  I am not sure I would be able to participate though since I have no money to pay for the initial flight out and back. It's looking like between $500-$1,000 for a round trip ticket. Argh.  I just figure I'll worry about that hurdle after I get accepted.  I don't know if I should talk to my doc about it.  I'm sure he'd be 100% for it since it would save the insurance co. money on my next scan!  I could skip my Feb. scan if they wanted me out there before that -- they will send him all results.  I just honestly don't know what to do.  I would be going alone and that just sounds crappy.  I mean, I wouldn't want to make someone sit around for four days being bored to death while I'm getting scanned. I am the only one who can stay in the hospital.  You can't have anyone stay with you.  It just sounds so lonely though.  Of course, my ex lives nearby so I could always ask him if he wanted to come and see me.  Show me the sites. You can leave the hospital.  You don't have to stay 24 hours a day.

The only thing I don't have is my surgery notes.  I think I can get them from my oncologist.  I know they have EVERYTHING in my file...  I'm going to ask when I go in for my blood draw and shot.  I'll keep you posted.

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).

Happy Birthday to Me!

Today is my birthday and I'll cry if I want too!  No, really, I am feeling much better this week than I was before Christmas.  The "blues" are lifting.  I think the Holidays are hard for many of us!

I want to say that I am truly grateful to be here for my 51st birthday!  18 months ago, when I heard that I had cancer and it had already spread to my liver, I honestly thought I was a goner!  My Mom found out her cancer had metastasized to her liver and she was gone in 3 weeks.  It was not Carcinoid but colon (small intestine) cancer.  Of course, I went home and "googled" carcinoid and read that 74% of patients live five years (or something like that).  I can't really remember.  I now know that the odds are good that I will be here 10 years from now--I hope so.  I no longer "dread" growing old.  I embrace it!  I'm debating letting my hair go gray but it's long (for me) right now and starts looking terrible when I don't color it.  I wish there was a way to "highlight" it with gray.  I do have a stripe right in the front... might be an interesting look.

I do wish my family would all get along.  We do mostly but there have been a few changes in our family dynamics that have caused less get-together's and family dinners are now a challenge (they don't happen). Kids (nieces and nephews) are moving out-of-state, growing apart and well, just growing up!  I'm trying to look at it all as an opportunity for VACATIONS!  Looks like two of them will be living in California and hey, who doesn't love trips to Cali?  I do!

I plan on going to see my sister down South more.  I'm going to just pack up the dog and drive down on the weekends when I can. After all, she does have a pool!  Woot, woot!

Cancer-wise, nothing to report.  I still won't have my next scan until February.  I've debated moving it up to January as that will be six months but I don't think waiting another month will make a difference.  I'm hoping for stability and/or no major growth!  I know I've talked about this in an earlier post so won't go into it more here.  I have been having some lower back pain, which is most likely a side-effect of Sandostatin.  I know it is very normal to feel every ache and pain is cancer when you have cancer.  Oy!

I've made a few new friends through this blog and Facebook, Carcinoid patients who are newly diagnosed or facing new treatments and surgeries.  It is one of the "good" things of cancer--making new friends.  We have also lost several this past year, which is sad (and hard and scary).

2014 is just around the corner!  I'm hoping that it will be a good year for all!