A Renewed Hope, Just in Time for Christmas

In my last post I left off that….I had just received the letter from my insurance stating they had denied my appeal for the third time. At the same time I got a letter stating that they had to send it out to a third party company that Medicare contracts to for a final decision on the matter.

I was sure it would be denied once again. I had researched this company and they had an 85% rate of siding with the insurance companies. It really did not look good. Not even a week passed (two days before Thanksgiving) and I got a phone call from a lady and it took a couple of minutes before it actually registered in my brain what she was telling me. She felt it was critical I know right away that they had decided in my favor to send me to Stanford.

Like I said it took me a few minutes before it registered in my brain. This was a HUGE win for me. This is what I have been fighting for the past 7 years.

Now begins the process of getting my records there. The past several weeks I have been working with people at Stanford to figure out who will be the best person to see.

I have filled out paperwork to have all my records from all of the facilities I have been seen at, sent to Stanford. This process alone will take my insurance a couple of weeks. I have been seen at both Northern California facilities and Southern California facilities. I was seen at a total of 6 different facilities total. At least they put everything on disk now. If they did paper records still it would be upwards of 4,000 pages or more not including images & films.

I will be following up this next week to see if they have started to get records and to see when I might be able to schedule my first appointment. As of right now I think my insurance thinks they can get away with just once consultation, but I know Stanford is going to want their own labs and maybe even their own scans. I may have to go back and fight my insurance to give me more visits and such. Not sure how that works, but seeing I have come this far I should be able to do this.

I think our biggest hurdles now will be the logistics in getting to and from Stanford. Then add care for our daughter while we make the trips. The drive there and back is 3 hours each way (with no traffic) and with my oldest daughter leaving for college in 2 weeks we are going to need to get a sitter. This is just going to take some serious planning and we are going to have to add extra expenses into our already stretched budget.

Even with the extra expenses, which will be very rough on us as well as the logistics of it all.  This is a huge deal for me. I will finally get the care and treatments that I have been otherwise denied up until now. I will finally get to see doctors who know about Neuroendocrine/Carcinoid Cancer (NETs Cancer). This will not mean a cure for me, as there still is not one at this time. However what it does mean is I will have a higher quality of life and possibly a few more years with my family. That means more than anything right now.

Now I can enjoy Christmas with my family, then send my lovely daughter off to BYU Idaho to school. Thank you for sharing the ups and downs. Hope your family has a wonderful holiday & Merry Christmas…

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When Doctors and Insurance Comp. Take Away Your Cancer Treatments

When Doctors and Insurance Comp. Take Away Your Cancer Treatments…

As I sit here writing this I am left to wonder what am I going to do. About a month ago I went to see another oncologist in hopes of getting a fresh outlook on my care and maybe a chance to convince him I need to see a specialist. Well that went very badly and I documented it in my previous post  Giving up is NOT an Option Feel free to go back and read it to catch up.

Anyway, since that went to badly I filed a complaint with my insurance in hopes of being able to talk to them and show them information as to why I need to be seen by a specialist. See this is not just a want at this point. My insurance does not have doctors with the knowledge or the testing capabilities I needed to properly see what is going on with me.

  • Where did it happen?
  • What was my complaint about?
  • How I do I want it solved?

Well that was harmless enough. Except it only gives you 4,000 characters in each field for each question. I did my best to put all the facts thinking maybe I could fill in the rest with someone later.

WOW was I wrong!!

I got a phone call back a day later from Cynthia. She informed me that she was submitting my complaint to one of their doctors, and he would decide by the following day if I needed to be seen by a specialist. I asked her if I could speak with this “doctor” because there was a lot of information he would need to be able to make that determination. After all, this is a rare cancer and unless you are familiar with my case there is no way he can make an informed decision in less than 24 hours. She told me I could not speak with him or get his name.

At this point my life is in the hands of someone who has never seen me before, and has no prior knowledge of my case. I am seriously wondering how this is even possible…. I can tell you it is not. I got a phone call back late the next morning from the same lady. She tells me that this doctor has denied my request sighting that the insurance company has everything I need and can take care of all of my needs.

In the back of my mind I already knew this was going to happen. I have been denied before. Last time they told me it would not make any difference in my out come so they did not see a need.

I asked this lady what my next step was because I did not agree with this doctor. She told me she could resubmit it to another doctor and get back to me by weekends end.

My husband was the one who took the call. This time was from Eddie. My husband told him I was not available. Eddie proceeded to tell my husband all about the decision. Mind you he did not verify whom he was talking to or if he had my approval to get this information from him. He gave my husband details about my case that were quite sensitive. What this guy did was a breach of HIPPA laws and my husband called him on it. We will be addressing this matter as well.

Anyway, I was turned down a third time now. I am going to have to get a lawyer and go through arbitration at this point. This is not the worst part though.

I called the oncology scheduler to get my next two sandostatin injections set up and was told she could not do this. There was a note from the on call oncologist that said I had to wait until my oncologist came back to discus if I will be getting them at all.  I get these injections every 14 days and have for 4 years now. My oncologist will not return until after the 19th.  This will be several days after I am due for my next injection.

My oncologist has threatened to take way the only medication that keeps my carcinoid syndrome symptoms from making me too sick. However he has never actually done it.  I am terrified that if I cannot get the injections I will be sick and maybe even in hospital by the holidays.

I am not happy about this. The thought of it is honestly making me ill. I don’t know what is going to happen next. I really don’t want to do this. I don’t need the stress or anxiety of a legal battle. I especially don’t want a battle with a huge insurance company.

Giving Up is NOT an Option

I had an appointment the other day with a new oncologist. This is my 6th oncologist in 7 years. I am trying to find an oncologist who will listen to me. Someone who will or can explain their reasoning behind certain decisions. I want an oncologist who will work with all of my other doctors as a team.  I do not think this is too much to ask, and this is one cancer that is best approached by a team of specialists, sharing information and knowledge and conferring with one another.

My current oncologist knocks down suggestions made by my other doctors and gives no real reason. He has become very complacent and has stopped listening to me altogether.  When he thinks I am stable, he wants to pull therapy saying it is no longer needed. Then I find myself having to fight a physician to keep the standard of treatment and maintenance therapy in place for myself. The therapy (my twice a month Sandostatin injections) is the one thing that keeps me able to live a somewhat normal life about 60% of the time. It is the only reason I can leave the house. This random, misguided elimination of my treatment regimen has happened twice now and I don’t feel I should have to fight for something that is standard treatment.

I was hopeful when I left the house yesterday morning. I should have known it was going to be a train wreck when we hit horrendous traffic before we even got to the freeway. I called the clinic and let them know I was going to be late. They said no problem. Deep down I felt I should have canceled, but I did not listen to my inner voice. I found out later my husband also felt the same way, but he didn’t want to say anything. I don’t blame him really. I probably would not have listened.

We got there about fifteen minutes late, got checked in, and everything seemed to be fine. Then the doctor walked in and both my husband and I felt at that point it was not going to be good. The doctor had me go through seven years of what I have been through, which I was not really prepared to do.  Is it too much to ask to have a prospective new specialist physician to have read my charts, events, medical history, and followed my critical blood tests and care prior to a first appointment? I pulled it off as best I could and of course I left out a few items which might have helped.  Thinking back now, these overlooked event just would not have made any difference in the outcome of this appointment.

 When he entered the room, he seemed like he had better things to do. He even stepped out of the room to take a call and was gone for almost 10 minutes. When he did return I had to go over information which I had already covered. After that he then proceeded to tell me that he looked over my records and that there was no possible way I could be suffering with carcinoid syndrome. He said he had no doubt I had been suffering with something, but it wasn’t carcinoid related.

I was floored. This guy had no clue what he was talking about. At that point I felt it was in my best interest to wrap it up and leave. He then said something to me that just made my blood boil. He asked me if he arranged for me to get Sandostatin injections every 14 day would that make me happy? The implication was that he wouldn’t be following on this and that I would not be followed in oncology any longer.

This just kept getting better! Did he really just imply I was a drug seeker, requesting a medication that has no addictive properties whatsoever? A drug that in reality would have NO effect on a normal person unless they had the illness and in need of suppression of those related symptoms? I almost had no words. I wanted to come unglued at that point and tell him what I really thought of him. I was so hurt and angry.

I did not give him an answer and just listened to him as he continued to tell me things about carcinoid cancer that have either been disproven or that have been out of date now for past 20 years. I began to wonder if this guy was living under a rock.

I have been treated for this cancer/syndrome now for seven years. It is very well documented. I have had several instances of what they call carcinoid crisis during surgeries and procedures. How can they wipe out seven years of my medical history because two doctors have decided that there is no possible way I could have carcinoid syndrome. I don’t understand it.

I would have fought harder in that appointment but this doctor had his mind made up from the moment he walked in the room. There was nothing I could say to change it.

Now I get to do damage control. I need to see what my next step will be. I am afraid my next step will have to be arbitration with the insurance company. That can take 12-18 months and I have to get a lawyer.  At this point I am not even sure if I will be able to continue to get the Sandostatin that brings relief from the debilitating symptoms associated with carcinoid cancer.

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Helping People Understand NET’s Awareness Day

11.10.2010

NET’s Awareness Day (Neuroendocrine/ Carcinoid Cancer) is coming up November 10th.  I thought would do a post on symptoms of Carcinoid syndrome (caused by NET cancer/Carcinoid tumors). Along with that how it is so often miss-diagnosed as IBS or Crohn’s disease.

Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why they fail to catch it early. However as time goes on and traditional cures for IBS & Crohn’s fail to work. The patient gets even more ill and the doctor has a choice. He/she can continue to search for the real cause or as in most cases they just continue to treat as IBS and or Crhon’s.

Many people go for 5 years or more (in my case it was 6 years) before being properly diagnosed. Most are stage 4 by the time they are diagnosed, and by that time it has spread to distant regions. There is no cure for Neuroendocrine/Carcinoid Cancer by the time it has spread. The reason most are stage 4 and it is caught so late is because doctors don’t look outside the box. They don’t want to think maybe it could be something else more rare.

The reason most doctors do not bother to look into more rare causes for symptoms is one thing they hear over and over in med school.

“If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for common rather than exotic causes for disease.

Most of the time people are finally diagnosed when they have Carcinoid Syndrome (after it has spread). The syndrome symptoms can actually be very alarming and scary.

Carcinoid Syndrome Symptoms:

  • Flushing
  • Diarrhea
  • Heart valve lesions
  • Cramping
  • Telangiectasia
  • Peripheral edema
  • Wheezing
  • Cyanosis
  • Arthritis
  • Pellagra

I was going to explain all the symptoms, but there are sites out there that would do a much better job at it. There are so many websites out there now dedicated to helping people with Carcinoid cancer (just wish there were more doctors). When I was first diagnosed there was very little information out there.

The website I am using for this is CarcinoidLink. It is set up specifically to help people understand Carcinoid syndrome and how to manage it. Also it has downloadable pages for people to track symptoms so they can take them in to show their doctor. Helps them know how the therapies are working or not working.

The biggest reason I wanted to use it for this post is because it is easy to find information and easy to understand. Here is the link.

Carcinoid Link:

http://www.carcinoid.com/patient/understanding/carcinoid-syndrome-symptoms.jsp

Please…..

Check it out and feel free to ask questions. Email me if you like. The more understanding and awareness we get out there about this the more doctors will educate themselves. They will have to take it more seriously. With education they will be able to recognize it and maybe treat it in people before it becomes stage 4.

Neuroendocrine/Carcinoid Cancer is a horrible disease to live with. Right now here in the US we only have a handful of specialists and very few therapies to help us. If this were Europe we would have so many more options. They have therapies and procedures to prolong life that have been used for 10 years or more, that here in the US are just now in clinical trials.

I know so many who have paid to go over seas for treatment because of the limited options here. Most would not be alive today if they did not go. The therapy I am referring to is called PRRT (Peptide receptor radionuclide therapand) requires 3 trips to Europe. Each trip costs 10,000 US dollars. Most that I know have done fundraisers to go (some have used their own money if they had it). However this is not an option for most.

Over the past 2 years I have seen so many (10 or so) die from this. Some I knew some I just knew of. Being this is a rare disease you kind of seek out others who have it. It is like our own community and when one of us Zebras (as we call ourselves) dies it really affects the rest of us.

We do our best and live life to the fullest. Our ribbon is zebra striped (as you can see above) for the zebra. Last year I made this graphic and it is true. Our stripes do make us unique. We are a proud few and we are survivors.

I made this graphic last year and it is true. Our stripes do make us unique.

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We finally landed……

Much has happened since I blogged last. We did finally land and got moved into a new apartment. Of course we had to spend 3 weeks down in southern CA waiting for the apartment to be ready.

 

We were able to make a trip to Disneyland (a very generous graduation gift to my older daughter, from a very dear friend). Was an awesome trip. PA was in heaven and LOVED all the rides. Her favorite was Star Tours & Space Mountain surprisingly enough. We were able to spend some much-needed family time together. My husband did make me sit in a wheel chair to get around though. I was not feeling well.

 

Turned out a few days after that I went back into the hospital. I could not eat and was in horrible pain. I ended up having a tumor taken out of my bile duct & had several stints put in. Apparently my bile duct was completely blocked with scar tissue and the tumor. Then the next week I recovered before we finally were supposes to come home.

 

The morning we were supposed to leave my husband went down the stairs (was 2am and dark) and slipped down the bottom 3 or 4 steps. Instead of leaving we got to take another trip to the ER. Only this time was to see if he broke his elbow. Turned out was not broken but badly sprained. He also hurt his back again and is going in this next week for an MRI to see what damage he might have done to his back. He had 2 back surgeries a little over 10 years ago.

 

We were able to make the trip back the next day. Of course it was raining, but with the help of my in laws and my older daughters boyfriend & his brother we were able to get it done.

 

It has been a rough month. All of us have had to make adjustments living in a smaller place. Poor PA has had it the worst. She is still not sleeping and is really making life hard some days for me. I am hopeful she will settle down soon.

 

Now a month later, we are a little more settled. This next week I will get PA registered at her new school. I also have more testing in nuclear medicine coming up (an octriotide scan). Then I also have appointments with specialists. I also have another surgery the last week of Aug. It will be a busy month. I hope to update a little bit more often.

Uncertainty of Moving

Feel like we have been in a state of disarray for months. We have been organizing, getting rid of stuff and packing for what seems like forever. Here it is May we are still in a house we cannot afford & we still do not have a new place lined up. Honestly I am not sure if we can pull this off, but I am hoping we have enough tucked away. Was hoping to have a bit more saved up, but with having to spend more time in this house it took some of our moving money just to stay afloat. Now that our plans have changed and we are making a bigger move than we had originally thought our needs have also changed. I am not sure if we have enough money to make this work.

We are now focused on Southern CA, as we feel this is the best choice for our family. I know my medical care will be better down there and my chances at seeing a specialist is a lot higher than it is in Northern CA. Patty will have a chance at better education programs and medical care as well. This is going to be a huge undertaking not only physically but financially as well.

This next week Mark will be headed down to Southern CA to try and find us a new place to live. In just about three weeks we will finish putting everything into a storage locker, we will pack up the van & head down there. Of course before we go there will be a graduation & both girls will finish school for the year.

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Case of the Missing Cookies

Case of the missing cookies

The other night, I had just gotten PA out of the shower & I was in her room looking for clothes. While I was going through her drawers I found a surprise in the bottom corner of her drawer

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A mystery was solved from a few nights previous.

The missing cookies

It all started few days before I found the “surprise” was on Sunday. It was PA’s sister’s 18th birthday (yes, I feel old).  On Monday one of her friends brought a bag full of cookies to school for her. She shared a bunch with her friends and brought the rest home. After dinner she offered two cookies to PA, and she promptly ate them. As the evening went on the bag of cookies was left on the counter unattended. We did not think twice about it.

The next morning we got up and when my older daughter went to put the cookies in her lunch they were gone. We could not figure out where the cookies went. When we went to bed there were 5 cookies in the bag. I know we did not eat them, and as far as we knew PA had only had the two cookies. My older daughter went to bed before us, so I know she didn’t eat them.

Now back to the drawer. That is where I found pieces of many cookies sitting in the bottom corner of her drawer.

This is not the first time we have had this problem with her stashing food. She has done it with soy sausage, cheese, pretzels you name it. However it has been about a year since she had done it.

I did go back in her room the next day after she went to school and found what I feared.

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Found an old ham & cheese sandwich from Subway.


Also in her closet:
IMG-20130302-00017I found pretzels in the big teapot that holds her tea set.Now I am thinking I need to go through her room again. We have been lucky to this point, she has not gone back and eaten anything that has made her sick. I need to figure out why she does this.I have read a few places on line and most say it is because kids were deprived of food. This is totally not the case. I am having a hard time finding anything more on this subject. She is not overly OCD either. I am really kind of baffled on this one.If anyone has any ideas or experience or insight feel free to share.  Thank you.