Mable is still my friend!

I saw my oncologist last week.  No changes in my liver tumors!  Still friends with miss Mable.  I had two interesting things on my scan though. The First was a sub-acute right rib fracture of the eight rib. Now I know where that pain was coming from!  I know when I did it too but not why it fractured.  I bent over to move bucket of water and something "popped" in my ribs.  It hurt like hell and still does. I thought that perhaps I popped a muscle.  My oncologist didn't even mention it.  I saw it when I asked to read the report.  Then I asked him.  It was the very first comment.  I think he only reads the conclusion at the end...  When I did say something, then he asked me if I fell.  I was like "no".  He said it didn't have bearing on my cancer so???

The other interesting (funny) thing of note was a "new globular soft tissue density in the left buttock subcutaneous tissues.  Hahaha.  It could be a Sando shot that didn't go deep enough into the muscle (what a waste of money).  If it get bigger (it's 1.6 cm) then we will know if it is or not.  I did mention my heart palpitations.  He said nothing about the EKG I had.  He seemed clueless unconcerned about that even though carcinoid can cause them.  It really makes me miss my old oncologist.  I'm debating on whether or not to switch centers so I can go back to him.

Not my ribs!  8th rib is the one I fractured!

The next day I had an appointment with my GP (she's an internist) for a prescription refill (I hate having to go into the doctor just to get a refill but some meds require a yearly visit I guess).  I told her about the heart palps, the rib fracture and she was concerned. She was going to pull up my old Holter monitor results and echo cardiogram from 2012.  She wanted me to do the Holter monitor but when I told her I had and how big a pain it was she said she'd "see".  She also said fracturing my rib that way is NOT normal.  Wants me to have a DEXA scan to check my bone density.  I'm getting that on Wednesday.  Hope my bones are ok.

Oh, forgot.  When I got my Sandostatin shot, the needle clogged.  Not once, but twice!  She has to stick me 3 times!!!  I've never, ever had a needle clog.

All-in-all, good news.  Me and Mable will hang out for as long as we can!

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.

NET Cancer Day is November 10th!

and I get my butt dart!  I mean, my Sandostatin shot.  On NET Cancer Day.  Yeah.  It isn't really a butt dart anymore.  With the new formula, it is a little less painful although I have had more pain after the shot than I was having before.  I don't really think it is the formula though.  I think it is just how it is.  Sometimes it hurts and sometimes it doesn't.

Sorry I have not posted.  I've had "technical" difficulties and have not been able to access this blog.  I'm not sure how I got in tonight.  I just kept trying and it finally popped up.  Weird.

Soooo,  with NET Cancer Day approaching.  I do want to give a shout-out to raising awareness for NET/Carcinoid Cancer.  I really want to start being more or an advocate for us Zebras and help raise awareness of this rare cancer.  I am going to try and do much better with the blogging...

Please check out the Carcinoid Cancer Foundation www.carcinoid.org and if you are on Facebook, they have a zebra striped background that you can overlay onto your profile picture.  It is very cool. I did mine.

I wanted to add that one of my concerns about being "open" about advocating for NET cancer is that my work does not know about my diagnosis.  There are a few people who do but not my boss or the directors that I support.  I also work for an insurance company so it can be a little awkward.  I figured I wouldn't ever say anything until I had to get additional treatment.  I may "come out" but I haven't decided when.

My next scheduled blood work isn't until the first part of January. I have a scan scheduled for the end of January and then meet with my new oncologist the first week in February.

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!

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.