Scanxiety...

Google Scanxiety and you will actually get a definition: Anxiety suffered while waiting for the results of an important medical scan.

My definition: Anxiety suffered while waiting to get the scan!

I met with my oncologist yesterday and while everything seems fine, he did say that I should have a scan now rather than wait. I was a little surprised because at our last visit he said I could wait as long as my tumor markers remained "normal." This time he said he wouldn't want me to go longer than a year, which it has been as of Monday.

I am actually relieved to be getting a scan. Even though my markers and other blood work are good, I still want to "see" what is going on, if anything. Better to know that I am still stable than to wonder if I am. I don't trust tumor markers to show everything. However, even with the relief, there is anxiety. You just never know. He also told me I could get it within the next couple of weeks, like no hurry. Then he told the nurse to schedule it "now." NOW? Did he feel something when he palpated my abdomen and just didn't want to say anything? Then I remembered that we discussed getting the scan before he examined me. I'm sure he just told her to go ahead and schedule it now, not meaning urgent but to get it done since I may have had to wait a couple of weeks to get in. Well... that ain't the case. I go in Monday morning at, gulp, 7am! I'm not too thrilled about that but at least I'll be done early and can get to work. This is at a different hospital than I've had my other scans. This is at the hospital where I had my mammogram. Its a nice place and I'm sure it will be fine.

Keep your fingers crossed for good results!

Also, today is World Cancer Day.

Normal is...normal!

It took me 20 minutes to get logged into my blog.  Loooonnnnnnngggg story.  I almost gave up.  Sometimes I feel like "why bother".  Not that many people read my blog--not that I blame them.  I don't have much to say and not much is going on in my cancer-land.  Then I remember those few who have reached out to me and said "thank you--your blog has help me!"  Ah, that is music to my ears and why I started a blog in the first place!  I don't talk much about my day-to-day life because this isn't what this blog is about and is not the purpose of it.  I wanted an easy way to update family and friends on my medical condition and to help other suffering with this or any type of cancer.

So, getting back to my post title, Normal...is normal!  All my bio-markers (or tumor markers) came back NORMAL!  Awesome news right?  Well then why do I feel so unsettled?  I guess because deep down inside I really need that scan, that peek inside, to tell me everything is OK.  I am still on the fence about asking for a scan. I want one but I also think that everything is fine.  Maybe better than fine.  Maybe my little tumors decided to vacate the property (of my liver) and disa-fucking-peer!  That would be funtastic!

This is what I've decided (for the moment anyway):

1. I am not going to worry about it.  I will see what my oncologist says.  
2. I will voice my concerns (hey, nothing growing in the liver but what about elsewhere? Even though I know what his answer will be--which is "whatever is there is small so what are you going to do about it?)...
3. If I wait, how much longer do we wait?  6 months?  3?  4? 5?

That's about it.  No major issues really.  Oh, my heart palpitations have been going crazy the last week or so--until today.  Today they have not bothered me at all.  Weird.  I don't know what they are related too.  If they continue, I will mention it to my oncologist.  He said if they came back he would send me to a cardiologist.

I've found a new GP.  I have an appointment next week.  I just need my thyroid meds refilled and I forgot to have my OBGYN check it before my insurance changed.  I HATE going to a new doctor just for that but I saw another doctor in this practice years and years ago--he's no longer there (I was sad cause when I found his name on my insurance I was very happy).  I really liked this doc.  This was about ten years ago. I remember his nurse was in with me before the doctor came in and when she saw that both my parents had colon cancer, she told me I MUST go get a colonoscopy NOW.  I wonder if I had, would they have found my cancer then while it was still small and hadn't spread?  Could I have been CURED?  I will never know.... and it doesn't really matter now anyway.  

So, this new doc.  I am going to ask him for my complete thyroid panel, Hydroxy 25 Vit. D test and I will talk to him about my heart palps but my guess is once he see's that I have carcinoid, he won't want to deal with anything outside the normal stuff. Maybe my blood pressure too--it's a little higher than it was pre-cancer.  Used to be low and now I'm definitely in the pre-hypertension to hypertension range. I also need to go have my yearly mammogram.  I'm about a month past due.  I dont' have anyone to send the results to so I decided to wait.  I will get this new doc to order it for me.  I'm not sure with my new insurance where I can go.  I hope I can go to the same place but its doubtful--they don't play well with outside insurance.  I just don't know how they compare them if they don't have them, you know?  I'm not worried about it.  I'd skip it this year but I'm so lumpy I don't think I'd know if I had a "new" lump to be concerned about.  

My results of the Neurokinin A test was..... 20!  Remember, less than 50 is the desirable range!!!  My Pancreastatin was also in the normal range!  It was a little above normal last time so it's come down even more!  This is such good news all around!  

Thanks for reading!

  

A quick update

I haven't posted anything in a while because there isn't much to tell you about.  I did get some blood work done last week and so far, all is good.  CBC and blood chemistry.  Liver function tests included in the blood chemistry and those are all normal!  I haven't seen the CgA (tumor marker) results yet but it should be available this week sometime.  My Pancreastatin and (for the first time) Neurokinin A was sent to ISI in California so those take 3 weeks to come back.  I probably won't know those results until I meet with Dr. Whisenant on the 19th.  I might be able to get the results through LabCorp. but I'm very frustrated with their website right now.  I've tried to log-in all morning but it wont' take my password and when I reset it, it resets my Microsoft password. Weird.  Frustrating.  I give up!

I did get my appeal approved for the last CgA test I had done through my old insurance.  Talk about stupid. They paid $22 of the $236 charge, which is the "allowed" and "contracted" amount.  I owe nothing.  So, if no insurance, a simple blood test costs over $200!  Crazy.  At least with BCBS, I don't have to worry about pre-authorization for blood tests!  Duh.

I am still not sure about NOT having a 6 month scan.  Dr. Whisenant said he didn't think I needed one unless by tumor markers increased but that it was up to me.  I know I probably don't need one but I'd still like to know what is going on. I know it won't make any difference treatment-wise unless I had a lot of progression or new tumors (very unlikely) and we should see that in the tumor marker blood tests first.  I have read other patients stories about having normal blood tests and seeing tumor progression anyway so I still worry.  I guess I will talk to the doc about it when I see him.  It's my life after all (and my money too)!

If you are curious about Neurokinin A (NKA), it is more of a prognostic blood marker test.  I found this in a study paper:

Turner has shown in a retrospective study using a clinical
database comprising 117 midgut carcinoid patients that NKA
is an excellent prognostic indicator. In the patients who
presented with NKA > 50 ng/l (45 pmol/l) survival at 5 years
was 18%, whereas in the group who presented with NKA
levels lower than this threshold the survival at 5 years was
70% 

I think the prognosis is a bit better than listed above.  As much as 84% at 5 years for the <50 group.  I wanted this test run a long time ago but didn't push for it.  I didn't have to push at all. I just asked him (Dr.) to do it and he did.  It'll be interesting to see what my results are.  Although I don't put much stock in just numbers and statistics.  We are all so different.  Every patients disease seems to take a different clinical course.  Its one of the reasons it's so hard to treat.  

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

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!

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!

NET Cancer Day is November 10th

I was diagnosed with a Neuroendocrine Tumor (NET)/Carcinoid Cancer in June of 2012. I had never heard of this type of cancer before.

Most cancer organizations do not lend support for research or awareness of this particular cancer.  So, those 
of us who are being diagnosed are trying to raise awareness.

NOVEMBER 10th is NET Cancer Day to raise awareness of neuroendocrine cancers around the world. 

What you may not know is this:  This cancer usually goes undetected or misdiagnosed for years, because assumptions are made.  Doctors are taught that when you hear hoofbeats, think horses not Zebras.  The hoofbeats that are heard in our cases ARE zebras, not horses. In other words, we are not the obvious.

There is no cure.  Only rarely can a tumor can be cut out and all is good.  Most of us are diagnosed at the Stage IV level when it has already metastasized to our livers and other organs. In some cases, radiation and chemotherapy are not usually an option. I am grateful that this is usually a relatively slow-growing cancer.

KNOWLEDGE is power. I ask that you make it your mission to learn. Go to the NET cancer/Zebra/Carcinoid pages and learn more. Talk to others about their stories/experiences. LEARN more and more and more.

Please make the zebra ribbon as recognizable as the other ribbons. It starts with you committing to tell someone else’s story…and keep telling it.

It is so important to raise awareness with others.  And please support those you know, and show love to the people in your life…cancer or no cancer.

http://netcancerday.org

Gifts

My niece made these Zebra themed pens for me:

I have one more I'll need to add the the "collection".  I really want to learn how to make them so I can make some for our support group.  The next meeting is mid-November so I better hurry up!

I go in Monday for my post procedure follow-up appointment with my OBGYN.  I'm sure it'll be a "quickie".  All is pretty good.  I'm only dealing with hot flashes now.  I do have some mild pain/discomfort in my lower right side, where on my last scan they noted a 1.2 cm lobulated growth in the right adnexa.  I Dr. Googled the adnexa and that is simply the area where your ovaries and fallopian tubes are.  Hmmm...  It is "enhancing".  Which I believe means it is taking up the contrast material ingested/injected for the scan.  I will ask her.  I think she had said we would follow-up with an ultrasound in January when I saw her next but that was before my procedure...  Maybe she'll order an ultrasound.  I'm not sure if I want to push for one or just wait until my next scan and see what it says.  I guess I can ask her.  I'm pretty sure it is nothing to worry about.  Probably another cyst.  I did have some intense pain last Sunday while riding my horse, Abbie.  It was very sharp.  It quit after I got off.  I thought perhaps it was a cyst and had burst!  However, I am still having that same mild burning/pain feeling in that general area.  I hate sounding like a hypochondriac but cancer does that to you I guess.  You worry that those aches and pains are cancer....  I know it is probably not but I still worry.

I'm still dealing with fatigue but not the "brain fog" that I had.  I'm usually really tired in the mornings and afternoons/evening.  I try to rest when I get home from work.  

It is a dreary, rainy, cold day here today.  48 degrees!  Brrr.  I hope it warms back up as I'm not ready for winter!

Hope all is well with you and yours!

Mom..

I was reading a blog the other day and it made me realize I've never talked about my Mom and her last days. This blog will be about that time in my life and about her...

I'm not going to start at the beginning but at the beginning of the end.

My mom had lung cancer (surgery and chemo) and then had some stomach pain so she had a colonoscopy, which found a tumor in her small intestines (same place as mine).  It was cancer--I am not sure what they called it.  Probably adenocarcinoma.  She did not have Carcinoid, like me.  She didn't want more chemotherapy.  We didn't push her.  In hind-site, of course, we wish we had!

A few months later she had a pain in her side and after a CT Scan the doctor told her that her liver was full of tumors to numerous to count.  She went in for a biopsy but her blood was too thin for them to do it.  They tried different drugs to help her blood count come up but to no avail.

Her doctor told her there was nothing they could do. She said she'd do anything they wanted her to do. They said they would call hospice.  (This was 11 years ago.  I'm not sure if there would be any options now as bad as it looked.)

I had just arrived at my work parking garage when I got a call from my dad.  This was not quite 3 weeks after her last appointment with her doctor.  My dad never called!  He said my mom wouldn't get out of bed.  He didn't know what was wrong.  I could hear the distress in his voice.  I got back in my car and headed to my parents house about 30 minutes away.  I think this was a Friday.

When I got there, my mom was still in bed.  I asked her what was wrong, was she in pain?  She said she just didn't want to get up.  There was no point.  I laid down on the bed next to her and we talked for a bit.  She said she didn't want to die.  She wasn't ready.  I told her I didn't want her to die either--

I did finally get her up and to the bathroom.  I'm not a very big person and neither was my mom but we barely made it!  I also got her to go downstairs to her chair.  I made some calls to my sister and her doctor (about hospice and why we hadn't heard from them).  I don't remember exactly but I do know I got a call from hospice and they were sending a nurse right over.

The nurse arrived and talked with my mom for a while.  Her main concern was pain management.  She also asked if we wanted a hospital type bed for her so she didn't have to try and go up and down the stairs.  They had one delivered that day!  My mom did not want to die in the hospital.  She wanted to be home.

My pretty mom!

Speaking with the nurse I explained my concern that she (mom) wasn't eating anything.  The nurse (I can't remember her name but she was very kind and compassionate).  She told me not to worry about it because at this point we would just be feeding the tumors.  I was also worried about her drifting off when answering questions.  Mom would start to answer or ask a question and then just sort of drift off in mid-sentence.  She (nurse) explained that when the body is shutting down, all the oxygen goes to trying to keep it alive and the brain gets less and less oxygen.

That afternoon my other sister came down and a few other people dropped by.  One of my mom's good friends, Lyla, brought her a strawberry frozen yogurt and she did eat a few bites.  My husband also had come down so it was a bit busy and noisy with people in and out.  One of the last things I remember my mom saying, in a whisper, to Lyla, her friend, was that she wished everyone would go home!

We did ask everyone to leave after that.  I figured she wanted some peace and quiet.  My sister went to get her pain meds filled and she seemed more comfortable after we got everything on board.  The nurse had told me to call her at anytime if I had questions or problems and that she'd be by the next day.  My sister went home that night and was going to come back in the morning.  I was going to go into work on Monday and get my FMLA paperwork filled out so I could take some time off to help care for my mom.  We were planning on taking turns between the three of us.  My other sister was coming up from her home about 3 hours away the following day.  Another friend of my moms who was legally blind was making arrangements for her daughter to bring her down so she could say her "goodbye".  

I think my mom was just done.  She was never one to want anyone fussing over her!  She was not responding to me much that evening.  She moaned a lot off and on so I gave her more pain meds when she seemed to need them.  I slept on the couch.  She passed in the night.  I knew as soon as I woke up that she was gone.  It was three weeks from the time the doctors told us there was nothing they could do.  When I called the hospice nurse, she was shocked.  She thought she would last a week or even two.  

This post came about due to a question one of my fellow "noids" asked on a support group site.  He wanted to know if anyone knew of any stats on what we die from (liver, tumor growth, heart problems)?  It made me think of my mom.  This post was very emotional for me to write.  I think I know how I'll die.  Most likely from liver failure.  

I do have some regrets.  I wished I'd stayed awake and been by mom's side when she passed.  At least I was there and she wasn't alone...

Quick Update on Surgery

I can't believe I've been home for almost a week!  It'll be a week tomorrow.  My surgery was not quite as we planned.  Instead of taking my entire right lobe, he cut out the biggest tumors. He did take a few sections from the left lobe that had the biggest tumors and then did RFA on a few.  I was actually pleased with this news.  It has made my recovery much easier and should give me those extra years we were hoping for.

I did on have any drains when I woke up. No NG tube.  I really didn't feel too bad.  They did take me to ICU for one night to keep a close eye on me.  A few days later I asked Dr. Kim if he had any trouble with my blood pressure or "stats" during surgery and he said I was "steady eddie".

When I arrived in pre-op it went a little crazy as I was the last patient they took back (not my fault--I was on time along with 30 other people) and they were ready for me!  I had two anesthesiologists, 3 of Dr. Kim's Fellows, two or three nurses, all doing stuff to me.  IV's, blood, EKG.  I did ask the anesthesiologist if he used "octreotide" during surgery and he said, yes, we will.  I felt much better about things after being assured of that.  I had 3 IV's one in each wrist, one in my elbow and then they put a jugular line in during surgery.

I'll post more details tomorrow.  Just wanted to give a quick update.

Surgery vs. Y-90 Sir Spheres

I need to update you on what Dr. B. the liver surgeon, told me!  I met with him last month.  He felt that the left lobe of my liver was enough to "support" me--keep my alive while my liver regenerates.  I do have 3 tumors in the left lobe but he could do radio frequency ablation (RFA) on them.  It is a small probe that uses heat to "cook" the tumor(s).  Whew, sounds like a MAJOR surgery and I know it has risks... my biggest problem is that my insurance won't pay him, not even out-of-network.

I did have my blood work done and a CT Scan last week.  Blood work is good.  My liver function is still 100%.  My Chromogranin A (CgA) went down from 249 to 111.  CgA is a tumor marker and can go up with tumor growth.  We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.

Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver.  Not a lot, a few millimeters.  I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months!  I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.

I met with my oncologist this past Tuesday.  I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap!  I shouldn't have been...  he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery.  He knows, however, that my insurance won't pay for him to do the surgery.  He said we had a few options.  He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it.  There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist.  I would love to go see him but don't really want to have surgery out-of-state.  I know a lot of us "noids" have too though so I would do it if it came down to it.  My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later.  Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin.  It's sort of like angioplasty.  They usually do it in three steps.  First, they map you.  They insert the wire and a dye which shows them how your liver is wired!  Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure.  The second step is actually inserting the radioacive beads to 1/2 of your liver.  Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half.  I know of several fellow patients who have had this done.  Some have tumor shrinkage and even tumor necrosis (death).  It can also just stabilize them from growing.

The plan:  I am going to wait until after my next scan to do anything.  We decided to see what my tumors do over the next four months.  I'm not 100% sure this is the best plan.  Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing.  Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want).  There is, of course, no guarantee that a new insurance company will approve anything!

I do feel better knowing we have a "plan".  My Oncologist seemed very positive and was impressed with how much I knew.  We talked about specialists and clinical trials, PRRT, Ga-68 scan, other treatments, etc. He was like, "wow" you know so much!  It is definitely true that you have to be your own "advocate" with this cancer.  So many, many doctors don't know anything about Carcinoid.  I think the word is spreading and we have to keep on getting it out there!  I still feel very lucky that all my doctors have known about Carcinoid and how to treat it.  From the Gastroenterologist who did my colonoscopy, my surgeon and my Oncologist, they all know a lot about it.

I will try to post more often.  I always have a brain-cramp when I try to remember how to get to the right account!  Stay well, be happy and live life to the fullest!