Tag Archives: NETs Cancer

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

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The day I broke down in the Dr. office

 

I was at the doctor a week or so ago, after being in the ER for the third time in less than 3 weeks. My regular GP really is powerless to help me with my cancer symptoms and some of the problems that go along with it. He tells me he wishes he could help me more, but it is above his pay grade.

We have a pretty good relationship and kid around quite a bit. After all there is very little he can do for me and I know it is frustrating to him as well as myself. When we were done he asked me how I was really holding up. As per my usual I blurted out “I’m fine, I get up every morning like every other mom. I take care of my special needs child as well as my husband and older daughter (whom is getting married next month). I have a lot on my plate to say the lease.” Then I started to cry.

His response was to tell me not everyone could do what I can and carry it off day after day,and how strong I am (I don’t agree really as I am just doing what any mom would do. In my mind).  I don’t have a choice. I can’t  not get out of bed. If I let one day slip I slide fast…. Down that dark road many of us know all too well. Except I know myself, I get stuck in that dark place and it eats me alive. th18L5ZWLY

I do my best to put a smile on my face and face each morning the best I can. Some days I am better than others, some days I spend on the verge of tears every second, like my life will fall apart around me at any moment. Some days I do spend in tears most of the day. I can tell you it is really hard to hide tears all day. Of course Mark sees through it and he does his best to bring me out of it.

I know most people with terminal illnesses will go through depression, anxiety and all the other fun bits that goes along with it. I have to say the past few months have been extra hard. With my daughter getting married and the fact we have had little to no help from the groom’s family or our own families. All due to different circumstances (so legit some totally bogus).

In top of everything else I now am getting billed for the formula that I was told was covered. Of course if my doctor had told me I would have to come up with a way to pay $250.00 dollars month for the next 8-10 months then I may not have done it and I might not be here today. The tube feeding is the only thing keeping me alive right now.IMG_20151006_023605 IMG_20151006_023204

I am petitioning my insurance company under special circumstances (however I am also dealing with a third-party vender. I also have to explain to their billing that I cannot pay.)  Would they please wait the 8-12 weeks it will take to get this worked out with my insurance company? Right now I am a month behind. I am praying they will be patient and wait. If not well I don’t know if I can continue the tube feeding.

If you can help , please do, just hit that little donate button on the right hand side. It does not have to be a lot of money.. I am more than appreciative. I wish I could say I could pay you back, but I know as of right now there would be no way. All the money donated goes towards medical supplies, travel to appointments and medical bills.

From the bottom of my heart I am pleading for help. If you can’t, well then you can’t. However you can pass it along to the next person who just might be able to. I am not greedy and do not expect all my bills to magically go away  over night. I just need a little help right now to get over this little bump in our road.

 I still appreciate you reading this and passing it on.

Thank you

dani

 

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…

Undulations (Bumps in the road) Heart Problems

It has been 2 weeks now since I was in the hospital and since I saw the surgeon and was told she could not do anything for me until doctors decided what they wanted to do about the tumors in my pancreas and kidneys. I went for a follow up with my regular doctor. Was really hoping it to be uneventful. It was anything but that. He ended up doing an EKG. Nothing new for me because well they always run them. I have just gotten use to them doing them. As it turns out, that is not normal. Really?? You mean to tell me not everyone gets EKG’s done on him or her more than once a year or just when he or she are having problems?

Anyway, my doctor had the nurse do the EKG. Then comes back in the room  and tells me that he is afraid I will have a heart attack… Excuse me! I have fabulous blood pressure (in fact it is very low, thank you very much); I have low cholesterol levels and low triglycerides. I have none of the risk factors for heart disease (except that I have cancer). Then he tells me it is a matter of my heart doesn’t get enough oxygen (or part of it).

So now I wait for him to get back to me about more testing and about seeing the cardiologist again. I acted surprised, but reality I’m not. Carcinoid heart disease is very real and just another part of this cancer I am battling. It is just a part I did not think I was going to have to deal with just yet. However it has yet to be determined if this is what it is or not. So until it is I will wait to make any assumptions on what I think this might be.

cropped-picture-to-sum-up-the-week.jpgAs of right now it is another bump in the road and I am sure I will find out soon (or at least I hope).

Did you know? Carcinoid/NETs Cancer FACTS

  •  Over 90% of all Carcinoid/NETs patients are incorrectly diagnosed & treated for the wrong disease.
  • From initial onset of symptoms the average time to proper diagnosis exceeds five years. Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why it is so difficult to properly diagnose it early.
  • More than 11,000 new cases of Carcinoid/NETs are diagnosed each year, which now means that NETs cancers are twice as common as pancreatic cancer.
  • It is considered a rare disease, and most physicians are often unaware of current diagnostic & treatment options. 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 a common rather than an exotic cause for disease. This isn’t ignorance as much as it is a lack of experience and exposure.
  • Many physicians still believe that carcinoid tumors are benign, slow growing and do not metastasize. Fact is when most are diagnosed their cancer has spread to distant parts of their body, and they are in fact stage 4 and incurable at that point….
  • Irritable Bowel Syndrome (IBS) and Crohns disease are two most common misdiagnosed conditions for patients with carcinoid
  • Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitations, weakness, Heart valve lesions, cramping, telangiectasia, cyanosis, arthritis, pellagra, skin rash, heartburn and weight changes are the most prevalent carcinoid/NETs symptom’s
  • At least 110,000 people are living with carcinoid/NETs in the United States. I could not even venture a guess as to how many in the world.
  • Carcinoid/NETs Cancer is referred to as “The Good Looking Cancer” by the medical profession.

Most who suffer with this don’t look like what most think of when you say cancer patient. Traditional cancer therapies don’t work on this type of cancer. Most of us will not loose our hair (some do). Most of us look just like everyone else. Some of us will loose weight, some will gain and there will even be some who stay the same. You know that saying, you can’t judge a book by its cover. Same thing you can’t say a person is well or just by looking at them. We refer to ourselves as zebras, because of the rare nature of our disease and the saying that doctors are taught in medical school I mentioned earlier. “If you hear hoof beats, think horses, not zebras.” We are a heard of zebras. We may blend in, but we also stand out in our own unique way.21906stripesmakeusunique

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.