An End

For anyone who still may read the posts Danica shared over the years I am broken hearted in telling you my best friend, my love, my wife has lost her battle and passed on yesterday. I will be writing a nice piece in the next few days to share… Good-Bye Babe……….

Ever since I found out about the new lung tumors earlier this year. My mind has been full of coherent and non-coherent stuff. I have trouble staying in the moment and I have also had a hard time with crying fits. Mark and I knew this day was coming when they would find more tumors and they would have to biopsy and remove said tumors. I go between thoughts about my youngest daughter growing up and the major amount of help my husband will nee to navigate the waters of puberty.
I just did not think it would coincide with my oldest daughter becoming pregnant and all the emotions that go along with that.
As well as my youngest coming into woman hood and dealing with some of the things we are getting to deal with that. Like squishy bras and such. The hardest thing is I still have to bathe her and help her dress. She has no clue what is in store for her. All she knows is one day she will bleed and she will think she is dying. Then she will become impossible to deal with. A teenager with the emotional age of a 5 year old girl. In some ways I wish there was a magic pill that would just stunt her growth a little until she catches up (like never). These are what my dreams are made of right now. Mainly that I am around and can navigate the waters for her father. Heaven help him.

I know my best frine and daughter will be there for her if I am not, but this still will be tricky without mom.

I wave tried so hard several times to put together letters to both my girls in terms they will understand. Shannon is a real grown up and you woud think it would be easy. Well let me tell you it is not. It usually starts out goof enough and ends in a blurey mess with me crying. So this time I think I will make this opend ended. I will start our with pictures.

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.

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.

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

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.

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.

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

 

 

 

 

 

 

 

 

 

 

 

 

 

The feeding tube weirdness continues

A couple months ago I had to have a feeding tube put in, because my body was not processing food the way it should. I was loosing weight and very sick just from eating and drinking simple foods. All a result of the cancer I have.

Now not every Neuroendocrine (Carcinoid) patient has the same journey because we all are as different as zebras with their stripes. The first procedure did not go smooth at all from the start. Just when they were trying to put in the tube the first one busted and I had to have a second procedure to have it replaced. Then when they were introducing formulas the tube did something they almost never do (I guess a one in 100,000 chance) it curled back up into my stomach, and I was throwing everything back up. They had to secure it in my lower intestines. After a few days they sent me home.

Now things were progressing fairly well. I was able to do it at home on my own. Of course I was still having difficulties keeping weight on and was loosing weight. Not too fast so at least my regular Dr. was not to concerned at this time. I was getting to a more normal weight and I sure did not mind either.  This continued for a month or so and I think I lost another 20 pounds or so.

Then my tube stopped working it clogged over night. I woke up one morning to a puddle of formula next to me. I called my GI doctor and went back in to the hospital to have the tube replaced. Ended up it was knotted.

This is a picture we got from the doctor. It is from the inside of the knotted tube. Pretty wild.

Now this was something my doctor had never seen. I ended up staying several days as I had become very ill and dehydrated very quickly. When you depend on everything coming from a feeding tube you wear for 18 hours a day. When something goes wrong with it sometimes it takes a few days before you realize there is a problem. By that point you can become very sick very fast.

Like I said the doctors had not seen this before so another 1 in 1,000,000 chances I guess. This stay was a nightmare though. I had some really awful dr.s. In fact I had one close to my last day tell me he did not know why I was on a feeding tube or why I was getting so much pain medicine. He told me that evening that he cut me off. I spent that night in so much pain and did not see a nurse until the next morning. I then found out the doctor did not stop my meds at all. For this I am filing a formal complaint along with two others. So I really can not go into much detail. That however gives you a little detail into how bad that stay was.

That same stay our little blue car finally up and died. catastrophic engine failure. So now we are renting a car we really can not afford till we can get out van back on the road. It has been sitting at a friend’s house for 20 months on a non op because it was so expensive to drive around. Also because the fees and smog were so pricey now.

So I came out of the hospital on Wed. 2 days ago. I went to hook up to the pump to do my first feeding and sometime during the night the pump turned off and the tube clogged yet again.

Yes, I know this is getting old. So I called my GI again. Because of what happened the last stay I was going to wait till I heard from him. So I waited. He got back to me and said he could have me come in Friday. The day of our churches trunk -or-treat. This is PA’s Halloween as we do not go door to door with her because of her autism it is too over whelming. I asked if there was any way he could do the replacement and I could be home in time for the party? He was reluctant given my history, but figured out a way.

I went in early afternoon and had the procedure done with no sedation. Yes you heard me right.. NO sedation…. It was not fun and yes I did pass out once or twice, but I was home in time for the party. When we got home it was a mad dash to get ready. I got the back pack ready went to hook up the feeding tube so I could take it with me and I could not get it to work. OMGOSH!!! This was truly a nightmare.

So this is now my fourth tube and not even hours old and it not working. We got to the party and I spent the first 20 minutes on the phone trying to get ahold of my doctor again. Realizing he was gone for the weekend. So now we were planning on making another trip back to hospital after the party.(PA as a ghost princess.)

When we got home I decided to try one more time to get the tube to work. Just maybe it needed a little time? I tried a little coke because funny enough when you have a clogged feeding tube they try flushing it with coke to get it un clogged. It worked. I have spent most of the night keeping an eye on it, because I am a little afraid of it deciding to not work again. Also though because there is so much stress right now with the wedding so close now, the car that has now died and trying to get the van on the road. I am beyond stressed that I can not sleep.

Which really sucks. If ever we could use a miracle it’s now…..

 

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.

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.

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

 

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.

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.

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. 4^th. 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…

CRAZY SUMMER: unplanned surgery and a wedding (UPDATED)

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.

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.