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.
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.
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…
Posted in Carcinoid Syndrome/Cancer:, Living with cancer
Tagged Cancer, Carcinoid Syndrome, doctor visits, Family, Feeding tube, G-Tube/J-Tube, Hard times, health, humor, NETs Cancer, Neuroendocrin Cancer, Solutions
This will be a very short update as things are very hectic right now. Summer is going very fast and Patty cakes has been going bonkers. I have tried to keep school stuff going, but with wedding planning my normal cancer stuff (pain and being sick most of the time) and trying to keep the apartment from becoming a disaster zone. Things are a bit crazy.
OH YA!!! My Shannon is getting married in November. I forgot to mention that LOL… To a very nice young man named David. We have not met him yet as she met him up at BYU Idaho. They will be here end of July just in time for Patty-cakes birthday.
Anyway, besides having to throw a wedding with almost no money, I found out this week my poor husband needs another major back surgery. We are not sure as of yet what all this is going to entail.
We go see the surgeon next week. I think my husband is trying to move the appointment back a week so we can get a sitter. I do know this. It will be his third back surgery. His lower back is fused at L5 S1&S2.
**UPDATE 8/21/15** My husband did see the surgeon and he will be having hardware put in at the place where his back was fused the first time 15 or so years ago. As it turns out the fusion never took. They have to go back in and redo it. This will be 14-16 weeks recovery with 5 days in the hospital. This is going to require a bit of planning being I am on a feeding tube and my older daughter will be married and back up at school by then.
I still want to try to get our little blue car sold and to be able to buy a newer car that was higher up off the ground. We can’t afford to do it. The reason we need a different car is he has trouble getting in and out of our little blue 2000 Toyota Corolla. It is so close to the ground he won’t be able to drive it after the surgery. I am no longer able to drive at all so it’s not like I can drive us around. We are going to need a lot of help.
Right now I am putting this up on my blog for now. If you want to help you can donate to my PayPal account by using the donate button on the right hand side. I may later on do a go fund me or something like that. I am still not sure how all this is going to happen yet. His surgery is going to be in January sometime, we just have not set a date yet. We are waiting until after the wedding for now.
Please share this. I don’t like having to do this, but sometimes you have to swallow your pride and just ask.
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.
Posted in Carcinoid Syndrome/Cancer:, Living with cancer, My Ramblings:, My reality, Uncategorized
Tagged carcinoid cancer, Communication, Faith, Family, healing, Helping others, LDS, Love, Neuroendocrin Cancer, no remission
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.
As of right now it is another bump in the road and I am sure I will find out soon (or at least I hope).
Posted in Carcinoid Syndrome/Cancer:, Living with cancer, My reality
Tagged Cancer, Carcinoid Heart Disease, cardiologists, doctor visits, EKG, EKG's, Hard times, Heart problems, Just me, NETs Cancer
It has been since the beginning of December that I have posted anything new. Since then so much has happened in my life (not all good). Christmas came and went with much of the time all of us sick. Was somewhat uneventful and humble really. We did not have much in the way of extras, but we had enough to make it nice.
I had been doing well with the diet I was given by my GI doctor. However after Thanksgiving I started to have difficulty with food once again. I found myself relying on strong pain medicines daily just to get myself through the holidays. I did tell my GI doctor, and he determined I was suffering from an intestinal infection. I got antibiotics and sort of got over it. I also got a power port put in my chest back in Dec.
I was sick for about a month then I started losing weight very quickly. I think I lost about 15 pounds in less than 2 weeks. After that I started not being able to keep any food down and a few other symptoms (a little to graphic to mention). I ended up in the ER and after spending 14 hours in the ER they said I had a kidney infection, put me on antibiotics and sent me home.
I went back to my doctor 2 days later and he said there was no way I had a kidney infection and I had no business fending for myself out of the hospital. He had me stay put and made a few calls. I ended up back in the hospital (the cardiac unit) that afternoon and was there for 5 days. This was the monitor I was hooked up to so they could monitor my heart.
Turns out I have several tumors in my kidney along with the ones in my pancreas and now an incisional hernia. I now have to fight my insurance once again, because they do not want to do anything for me. They sent me home with some pretty major seriously regulated pain medications (one of which is a patch). They are trying to make me comfortable I guess. Last time it took me 6 months to get them to pay for one visit to Stanford. I wonder how long it will take me to get them to do anything for me this time. I wish I could just pay to go to Stanford myself, but we are having a hard enough time just putting food on the table and paying everyday bills. Thinks have been really hard for a couple years now, but the past few months and for the foreseeable future it is going to be even more so challenging.
I go back to the doctor on Monday to see if they are going to do anything for me.
We did get to go on an outing as a family (minus Shann because she is up at BYU Idaho). We went up to Daffodil Hill. Here is a picture we had taken.
Posted in Carcinoid Syndrome/Cancer:, Living with cancer, My reality, Uncategorized
Tagged Cancer, doctor visits, Good times, Hard times, insurance issues, Kidney tumor, Neuroendocrin Cancer, Pancreatic tumors, power port
About 3 years ago I started to accumulate a bunch of vintage costume jewelry, charms and stuff to make various types of jewelry. My intentions back when I started collecting all this were a bit different. I ended up storing it all away after my cancer advanced and I got really sick again.
My oldest daughter was cruising Pinterest one day and came across a picture of a brooch that looked just like one I had gotten for 5 dollars, when I was 14 at a craft fair. It was selling for a lot more than that on Esty and I was really surprised. I was very cheaply made and did not look that good either. That got me thinking that I could do much better and could use the money to help with medical expenses.
I puled out what I had stored away, then invested in some old pocket watches and watch movements that no longer worked. I started to put together some unique brooches. The first 3 or so I took pictures then just went around showing people to see what people thought. I wanted to get an idea of people reactions. Mainly to see if people would even want to buy them, and I got some great reactions.
I am hoping this will help me take care of medical expenses. I am having to spend more time in the hospital and my therapies and medications are so pricey. I can no longer work a traditional job, but this is something I can do with no overhead. Besides I love to do it and I can even do it when I am sick. With the holidays coming up I think these would make great gifts. No piece is the same and I do custom and also can design for men or women. Just ask. I would love your business. I do take Paypal..
UPDATE: I have a Etsy store set up now. Here is the link https://www.etsy.com/shop/StuffAndSteampunk?ref=hdr_shop_menu
Please check it out and help me pay off my medical bills and be able to help with expenses.
- 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.