Tag Archives: Family

11 Months now On TPN. Not doing so well.

It has now been 11 months since I started back on TPN. After a string of really bad bacterial infections they started to use my port for everything. Well I guess the port did not keep out the infection or it was never cleared to begin with.

About two weeks ago I got super sick again. I would have going to the ER the night before, but in all honesty I did not know how bad off I was. By the time my home health care nurse and her supervisor got to our apartment, I was not coherent and my fever was over 105. I was hallucinating and just not in good shape. My heart rate was erratic at best and I was floating in and out of consciousness. The nurse told my hubby it would be a huge risk for him to try to take me on his own. So they called 911 and asked for a special ambulance with cardiac equipment.img_20150807_105514

I am guessing it took them hours to bring down my fever and to get me stable enough to move me to a monitored room. One step down from ICU. After a few days I was moved to a regular floor and they put in a new PICC like for the TPN They wanted to take the port out right then, but my blood numbers were still not where they should so they were going to wait till end of weekend.

Then I found out they were going to do lung biopsy day after I got home the port removal next day. I kind of told them to go to hell. I was still/am still recovering from this horrid blood infection. I am sure my Dr.s are not happy with me, but I have good reason. The dr who was going to do the biopsy is not even board certified. That to me made NO sense. With my history with procedures and things going sideways fast. Just not a good idea.

I will see my regular dr today in hopes he can get me someone with the credentials to take the port out.

I have about 1/2 a dozen or so tumors in my lungs that need to be taken out. I am not happy about the fact that Kaiser is going to be doing it. I am scared, last time was just one tumor and the surgery went sideways at the end. This time we are dealing with so many more. It just scars the crap out of me.

So I should do a bit more of an update on the family front. PA started having seizures again. So she is back on medication. We are having to home school her and this is NO walk in the park. Shann was easier to home school by far that PA is. Oh My Heck this child is worse than her sister ever was.img_20150619_173119

We have tried it now for several months now and we need to go back to regular school. She just is not doing well and is so hard on me. I am spending so much more time in bed I just can not keep up. Then the house work. I keep falling so far behind I use to keep a very clean house. Now on a good day I can hardly just keep it picked up, let alone clean.

OH!!! The best news of all!! My oldest daughter Shannon and her Husband David are expecting. Due date is July. I am excited for then, but I am not sure if I am ready to be an Oma img_037988

Update… Now Carcinoid heart disease to deal with on top of it all

I have been on this feeding tube now for a month. I was doing so well up till last week when I was hospitalized again. I went in for an infection in the area around the feeding tube. When I got there my heart was racing over 150 beats per minute and chest pain. Then my trip for an injection of antibiotic turned into me being admitted because of heart problems that they now had to figure out. I was admitted to the tele monitored floor where they tried to get my heart rate down for 3 days.

They ran all sorts of tests, CTs, ultrasound of my legs to look for clots and echo, EKG’s and other tests. So I was there for three days and they are now making me use forearm crutches because of my stability or lack there of. I tire easily and get winded very quickly.

Turns out this is because of what they found on the echocardiogram. I have thickening of the hear wall and hardening of the valves. As well as some back flow of blood into other chambers of the heart that are not suppose to be there. In short this is Carcinoid heart disease. This happens in 50% of people who have carcinoid syndrome. To be honest I was hoping I was going to be able to dodge that part of all of this. As always I get to be the rare of the rare.  At least I am consistent LOL….

Since I have gotten out again, I have ordered all my records from my insurance. When I get them I am going to start calling around and seeing if I can get a specialist to look at my case. Then if I can, I have to come up with the money to see said specialist. This is getting really serious now. The years I thought I had have turned into maybe 2 without treatment if I am lucky. I do know my insurance has no plans of treating this because they think it is not anything to worry about. Mostly because they don’t understand carcinoid.IMG_20150907_212544

This puts me in a bad spot right now because I am still trying to throw my daughters wedding and keeping my youngest happy. While running a household (with the help of my loving husband). My husband is in school and also taking tax prep classes at the same time. So after the first of the year he can work tax season. Then sometime March or April he is going to have back surgery. This is all going to be crazy expensive and I am still selling jewelry and collecting donations. I am hoping somehow to be able to go see a carcinoid specialist sooner rather than later. We really could use all the help we can get.

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My New Life with a Feeding Tube

I have been suffering with Neuroendocrine (Carcinoid/ NETs) Cancer for the past 9 years. This is no secret. I have been blogging for several years about it as well. However for the past 3 years I have also have developed chronic pancreatitis from the treatment/ medication I use to control symptoms of the syndrome. As a result my digestive system does not deal well with food much anymore. The past 6 months has been a struggle just keep food down and even keeping liquids in me has been near impossible.

I started to lose weight and have spent many weekends in the ER getting fluids and nutrition via IV. My GI specialist has been trying to talk me into getting a G-tube (feeding tube) put in my abdomen for several months now, but I was very reluctant. For some reason having a tube in my stomach and being tied to an IV pole most of the day did not thrill me much. As a matter a fact it sounded like prison to me. A kind of hell if you will. I already am a prisoner to this cancer.

After months of fighting persistent nausea, throwing everything I ate up. Or being tied to the bathroom because the diarrhea was so bad I could not leave. I finally sent a note to my GI doctor asking how soon we could do this. Keep in mind this was Aug. 3 a Monday night. He emailed me at 9pm that very night, saying he was going to call me in the morning to give me a time to be at the hospital on Tuesday morning Aug. 4th. I was admitted Tuesday midday and had the procedure in the evening.

He put in a G-tube Tuesday night, then on Wednesday he went back in and put in a J-tube. I was pretty bad off by this time and they really had to work hard to stabilize me. I was dangerously dehydrated and malnourished. They gave me bags and bags every day of antibiotics, phosphorus, potassium and other things along with trying to figure out how to keep me from throwing up all the formula they were trying to pump into me. On Friday night they had to take me back in because the placement of the J-tube and somehow made its way back up into my stomach (a rare complication). They sutured it back in place and started over with the feedings.IMG_20150815_170139IMG_20150815_170031

I finally started to improve and was making good progress. Was about that time I found out I was not going to be able to do what is called bullous feeds (where you can do a day’s feeding in an hour or two). I have to do it over the course of 18 hours. That leaves me a total of 6 hours a day where I am not hooked up to my “little friend” (the IV pole) as I call it. This was not the deal I signed up for and I was not happy about this. However my GI doctor explained to me that because of how bad off I was and that I am not the normal person who does this. For me this was a last resort. I had no other options. I could have done the whole PICC line and TPN thing again, but my risk of infection and even death is much higher.

After thinking about all of this I guess it is not so bad. I can get what I need to get done in 6 hours without being tied to the pole. I ended up spending a total of 9 days in the hospital and was able to be home to see PA start her first day of third grade. That was priceless and PA was so happy to have her mommy home finally. She has such a hard time.IMG_20150814_094116

Another thing I have been able to do since being home is going with my older daughter to try on and buy her wedding dress. What an amazing thing to do. She is getting married in November and I will still have the feeding tube. I hope I will still be doing ok and not in hospital. MY cancer at this point is advancing fast and my doctors honestly don’t know how to treat it. I really need to go see a specialist, but with the wedding coming then my husband needing back surgery in Jan. I need to try to wait until after all of that. I’m hoping I can stay stable till then.

 

Life is not perfect with this. In fact it really kinda sucks, but it is keeping me alive right now and for that I am so very grateful…

My views on Faith, Church and my Cancer

There is so much that goes along with having Carcinoid syndrome/cancer. The frustrating thing is the fact that not any two people with this have the same symptoms, or have the triggers for symptoms. With most cancers there are set symptoms and usually it follows a path and the treatment also is set, however, not with Neuroendocrine/Carcinoid cancer. We have a few drugs that help with symptoms and a few treatments that help some, but not others. Sometimes tumors can be taken out and other times they can debunk tumor loads, still others whom they can’t do anything. One thing most of will never see or hear, once our cancer has spread is a cure or the phrase “You are in remission”.

I get asked all the time if I am in remission and when I explain to them I will never go into remission or be cured I usually get one of two reactions. I get the ones who try to tell me if I have enough faith I will be cured. Then there are the others who just don’t believe it and either take great pity on me, (which I hate) or they bombard me with questions. I really do not mind the questions because they are interested and want to understand. I will usually stop and answer questions and I have gotten rather good at striking up conversations with complete strangers. I find it empowering to be able to educate people. Too bad I can’t get some of my doctors to spend a little time learning more.

To address the ones who like to tell me I need more faith. I try to explain to them my beliefs in which yes, some people are cured by faith and prayer. I know in my heart that there is nothing wrong with my level of faith. I know we are being tested in this life and this is my life and this is how I am being tested. I am not one that will be cured and there was a devotional/talk done by an Elder David A Bednar in our church (The Church Of Jesus Christ of Latter Day Saints, Yes I am LDS/Mormon) Those Facing Adversity to “Shrink Not” in which a question was posed to a young man who had been battling cancer. “Do you have the faith Not to be healed”? Here is the link in case you want to read it. https://www.lds.org/broadcasts/article/ces-devotionals/2013/01/that-we-might-not-shrink-d-c-19-18?lang=eng It was life changing for me to read this. See I had struggled with the whole faith thing for a long time. I was angry. I thought there must me something wrong with me, with my faith or my belief. I had so many tell me I needed more faith. Even the leaders in one of our old wards said that to me on a regular basis, which is why we moved. I started to pull away and question if I was doing the right things with my life. After much reflection and after moving to a wonderful ward I figured out it wasn’t myself or my faith that was the problem at all, but it was the faith of others. More that fact that they did not know or want to know about my cancer. They also did not understand me.

I have rarely discuss my religion on my blog, because most of my readers are here to read more about Carcinoid cancer or Autism, however I felt I needed too in this case. If it were not for my church and my faith I don’t know if I could have made it this far. My faith is what gets me through the day. My knowledge of the gospel and the continuing learning process I am going through helps me every day. I wake up every morning and my goal is to be the best mom, wife, friend that I can be. I try to help as many people as I can. I just try to live my life the best I can with the knowledge I have to offer. No one really knows how much time they have left here on this earth. I do know I will have less time than most, but I am ok with that. I do worry about my family, but I know they will be ok in time.

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Results, reflections and what it all means

A few weeks ago, I wrote about my experience with the gallium scan at Stanford and the procedure I had done. What I did not write about were the results and what it means for my future.

They were not able to use any samples from the biopsies taken from my pancreas. Apparently that is common because the needle they had to use is so small and the area was so hard to get to. There were just not enough cells in the sample. They will have to try again in 6 months to a year to be able to biopsy again. The main reason I have to wait so long to have the procedure again is my Dr. is afraid I am not strong enough at this point. The pros do not out weigh the cons. He feels I would end up in hospital for several weeks after and my health would decline.

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What they did find was I do have several small tumors (too small to biopsy at this time) as well as moderate chronic pancreatitis. Now I get to drastically alter my diet for both issues. If I don’t alter my diet I will end up very sick and not able to eat at all. I would then be hospitalized and be put back on TPN or be tube fed. Changing my diet should mean less time in the hospital. I still have and will have lots of pain when I eat and I do have to take pain medicine, but as long as I stick to the diet I am much better.

The diet I have to follow is not fun and I no longer get to eat out. I had to cut out all dairy, sugar, gluten, soy, and nuts of any kind or in any form. Had to cut out as much fat as I can (no fried food) no red meat, pork, chicken & most turkey. I can have some fish, but no shellfish because I am allergic. I can’t have tropical fruit, citrus, tomatoes, avocados and anything in the cabbage family. Also have to be carful with beans and all vegies have to be cooked well. I can have a few eggs here and there. I also have to be carful with potatoes (no skin on them) and minimize how much white rice I have (brown is preferable).

Seems pretty restrictive huh LOL… Well it is, but I am learning to work with it. When I explain to people how I eat just to simplify it I say that I eat a vegan, GF diet with no nuts. It is more complicated than that, but people seem to be able to grasp and accept that a little better.

The other thing my GI specialist told me no more over the counter pain medicine. He said it will aggravate my condition and he wants to know exactly what I am taking at all times. He went as far as to put in my chart allergies to ibuprofen and Tylenol products. Just so no other Dr. would order them for me if I were hospitalized.

He also put me back on octreotide injections to help control the Carcinoid Syndrome symptoms. This has helped greatly. It has made it so I am able to get back to doing some of the things I use to. Things like cleaning house and playing with my youngest daughter. It has made it so I am not as sick all the time.

I am grateful for this even if it s just a few days out of the week. I am not as well as I have been in the past. He explained to me that this is chronic and progressive. It is something I just have to accept. I should enjoy the good days and rest on the bad days. I should not dwell on how awful this disease is and how it is robbing my health and me of time.

So my focus now is one getting stronger and make every day count. We do struggle with bills and trying to make ends meet. That’s the other thing being terminal and in and out of hospital is expensive and well bills pile up. Pretty sure we will not be taking a vacation anytime soon or ever. I had wanted to be able to see my mom and her family again, but don’t think that’s going to happen. At least we have social media LOL…

Long overdue update with confirmed diagnosis

Things have been so crazy since the first of the year and I feel really bad about not updating my blog. However after you read this you may understand. It really has been crazy. The first week of the year I sent my oldest daughter to BYU Idaho for school. This was very hard for us as she was my help. Also she was PA’s big sister and best friend. This left a huge hole in our life. The first couple months very hard for all of us, but we made it.

After that, I finally got to see a specialist on Jan. 30th at Stanford University Hospital. After looking at all my scans and reading over my extensive medical history, he concluded I do have Carcinoid Syndrome and he felt they needed to find the tumor/s. I was told he was going to try to get me into a new clinical trial they had there at Stanford, which is the Gallium 68 scan.

The Gallium 68 is the newest in diagnostics for NETs cancer. It can detect tumors that are too small for MRI, CT or even Octreotide scans. He said he would call me in a few days to tell me if I qualified. I got that call the next and I got the scan on March 5th. This diagnosis is what I needed to get my own doctors to start treatment again.

The scan was easy. It was done in a PET scanner. Only took about 45 minutes for the actual scan. I did have to wait quite a long time after getting the injection with the isotope. Which made me so very nauseas. A little odd because most do not have any side effects from the isotope its self. After the scan I was free to go. The isotope has no lasting radiation or half-life at all. You can see more information about this trial in the link. http://clinicaltrials.gov/show/NCT01980732

I got the results a week later. There was uptake seen in the head of my pancreas. That is how they see tumors on these scans. I then waited for the tumor board at Stanford to meet and decide what should be done next. They decided I needed an Endoscopic Ultrasound of the pancreas with biopsies taken. I would have this done by my doctors in a few weeks.

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Shortly after that the manager of out apartment complex told us they were letting us out of our lease. We had to move at our earliest convenience. We had only been there 10 months. That apartment had turned into a nightmare. We are actually now in process of bringing charges against them for discrimination and breaking fair housing laws.

We did find a new place and it is a very nice. So much better than the last place. We finally got moved in and settled. I did spend much of the time sick while we were moving and getting settled. We are all happier here. PA is so very happy in her new room. She is looking forward to her birthday next week and for her sissy to get home at the end of the month.

I was very sick during the whole move and shortly after I did finally have the EUS (endoscopic ultrasound) that Stanford wanted me to get. After the procedure I get very sick again lost 25 pound in less than 2 weeks and ended up in the hospital for a week. I have been recovering since. I will write a follow up post about the results of the procedure and what it means to my treatment and my life.

Things have just been so crazy. The good part of moving is our new place is AMAZING! We love it here. PA LOVES it here. She, not once slept through the night in the last place. Here she has slept through the night from the first night.

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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