Category Archives: My reality

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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No, I did not fall off the face of the earth. Yes so much has happened.

I have not posted in a very long time. After losing a very good friend because of a mixup left me very distraught. At the time I had been through two major surgeries and made the mistake of going on line and opening my big mouth and saying some hurtful things I never thought would ever come out of my mouth. See I am not that kind of person. I always try to keep everything positive and this was anything but positive. I think I was just as hurt by the out come by the situation than the person that I said the horrible things too. I just wish I could have made good with this friend and gotten that friendship back. I still grieve for the loss.

This will be a long catchup. After my two surgeries in November I had lost so much weight that my Dr. finally put me on TPN (Total parenteral nutrition) via IV. I have been on it now almost 10 months. Last time was only 8 months. Right now they are talking permanent.

My husband had not one but two back surgeries at the beginning of this year. The first one they used stitches to close him up. Then he was having an awful reaction to something. They went in to take a look and realized he was allergic to the liquid the stitches were kept in so they had kept them in. They had to go back in and wash it all out and cut out the skin and such that was damaged then sewed him back up.IMG_20160212_142456

After a month he started to notice his jaw was swelling and painful. Turned out they nicked a gland and he developed an abscess. They had to surgically go in and remove it. So he had a really tough several months. It did make it easier that his folks stayed with up for a little over a month. They did everything for us. Was so nice that they took over care of out daughter and kept the house clean and we were able to take care of our selves.

Now that was not the end for me. I had been in and out of the hospital from May to end of Aug. At that time they replaced my P.I.C.C. line and somehow a really bad bacterial worked its way into my body. I was in and out of hospital for 3 months. A couple weeks  ago I went in and was really sick. So sick I had early organ failure. I was in the hospital for almost two weeks on heavy anti-biotics. When I went home I was on IV anti-antibiotics for an additional 2 weeks. That was a serious infection.IMG_20150316_162154

While I was in hospital I add a CT and they found several what looked like aggressive tumors in my upper right lung and admin. I had a P.E.T. scan this week and it was confirmed I had several tumors.

At this point I am unsure of what they are going to do. All I know is I am going to be getting second and third opinions.

There is so much up in the air right now. I am just getting information then when I have the reasonable amount of information I will make the right choices.

I think, that’s all for now. I am having a hard time keeping my eyes open. So look for an update. Later.

Thanks for staying with me

 

 

 

 

 

 

 

 

 

 

 

 

 

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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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).

Tumors, more tumors and a hernia Oh my…..

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. IMG_20150113_161128 IMG_20150120_160022

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. IMG_20150219_145058

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.

Fingers Crossed

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. IMGP3227

 

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.