Category Archives: Uncategorized

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……….

Advertisements
Aside

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 … Continue reading

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

Image

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

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

WP_20151026_16_14_33_Pro [224851]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.IMG_20151030_185126 [232925](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…..

 

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.

IMGP6660

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.