Tag Archives: Weird Things

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…..

 

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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.

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Case of the Missing Cookies

Case of the missing cookies

The other night, I had just gotten PA out of the shower & I was in her room looking for clothes. While I was going through her drawers I found a surprise in the bottom corner of her drawer

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A mystery was solved from a few nights previous.

The missing cookies

It all started few days before I found the “surprise” was on Sunday. It was PA’s sister’s 18th birthday (yes, I feel old).  On Monday one of her friends brought a bag full of cookies to school for her. She shared a bunch with her friends and brought the rest home. After dinner she offered two cookies to PA, and she promptly ate them. As the evening went on the bag of cookies was left on the counter unattended. We did not think twice about it.

The next morning we got up and when my older daughter went to put the cookies in her lunch they were gone. We could not figure out where the cookies went. When we went to bed there were 5 cookies in the bag. I know we did not eat them, and as far as we knew PA had only had the two cookies. My older daughter went to bed before us, so I know she didn’t eat them.

Now back to the drawer. That is where I found pieces of many cookies sitting in the bottom corner of her drawer.

This is not the first time we have had this problem with her stashing food. She has done it with soy sausage, cheese, pretzels you name it. However it has been about a year since she had done it.

I did go back in her room the next day after she went to school and found what I feared.

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Found an old ham & cheese sandwich from Subway.


Also in her closet:
IMG-20130302-00017I found pretzels in the big teapot that holds her tea set.Now I am thinking I need to go through her room again. We have been lucky to this point, she has not gone back and eaten anything that has made her sick. I need to figure out why she does this.I have read a few places on line and most say it is because kids were deprived of food. This is totally not the case. I am having a hard time finding anything more on this subject. She is not overly OCD either. I am really kind of baffled on this one.If anyone has any ideas or experience or insight feel free to share.  Thank you.

Bugs revisited…..

So I have written in the past about PA’s fear of flies & ants (well bugs in general). This is not a “Yikes a spider” type of thing but an out right screaming tantrum refusing to step into the room with the bug wakes up with nightmares type of fear.

I made the mistake last summer to take PA horse back ridding in hopes it would help her core strength & balance issues. Well it backfired on me. What is the one thing you cannot get away from around horses? You guessed it Fly’s & Ants. After that disaster of an outing it took her 2 weeks before she would sleep the 4 continuous hours a night before waking.

Now back to the present. We are very carful about the bug issue around here & it’s not easy because for some reason we moved to a place where the flies are HUGE and abundant. My husband is always on the look out for flies & actually carries a flyswatter around the house with him. One of these days I will make him a holster for the thing **laughing**.

So over the past few months we have not had a bug incident & no real mention of them (thank heavens). That is until very early this morning (4am to be exact). I woke up to her screaming at the top of her lungs that there were ants in her bed & just sobbing about how they were crawling all over her. It took my husband & I a long time to get her to calm down & had to move to the front room before she would calm down. Even then she was still acting like she had ants crawling on her. Needless to say she did not get back to sleep & thank heaven to my Shann (her 16 year old sister) for taking over for us after she got home from seminary (early morning bible study). My husband & I were able to get another hour or so before we actually had to get up & get going.

The rest of the morning was traumatic & she was whiny & defiant. I felt bad for sending her to school that way, but we needed a break. Now she is home & obviously tired. I still have no idea what brought this on. The only thing I can think of is that she has been picking at a hangnail she got & she is interpreting the sensation of that like she has ants crawling on her. We often have to cover up sores on her or she will pick obsessively at them until they are covered & out of sight. However she will take Band-Aids off & will not keep them on. Then she keeps picking at her sores. It really is a no win situation.

So I am left wondering how long she will not be able to sleep & how long she will keep having nightmares. I actually had thought she might be hallucinating this morning, cause she was wide awake & still was picking at her skin like she had ants crawling all over her. I am just not sure how to approach this. Even if we try to talk to her about it just makes her think about it more.

So frustrating sometimes when you just don’t know how to solve a problem like this with a small child let alone a special needs child.

The list of things I hate about my cancer…

Having the type of cancer I have is a lot like having an invisible disease. After having a few negative days I decided t write a blog post about the things I really hate about the cancer I have in hopes of getting it off my chest. So here are just a few things that that top my list .

When I go in for my chemo/shots people always look at me funny. See I don’t look like I have cancer. I look just like everyone else. I also don’t get the traditional chemotherapy either. I get painful shots in the ass with a huge needle that lump up & become hot & inflamed. Just like most people I still get sick after my chemo/shot. About the only difference as far as side effects is my hair will thin, but I won’t lose it all. Unlike most people I will be getting this type of chemo for the rest of my life.

Something else that irritates me is people who go in for chemo they usually get a sheet of paper with questions on how they are tolerating the treatment and the nurses talk with them about it and what might help them. Because mine is not traditional chemo I don’t get the questionnaire or the face time. I go in wait for 45 min in the waiting room get the shot & leave. I have many of the same side effects as those on traditional therapy. I still get the nausea, extreme fatigue & abdominal pain as those on traditional chemo. They just put me in a different category because the delivery of the medication is by shot rather then by infusion. I always come out feeling like I really don’t matter. Mine is rare & they don’t know much about it. So I am kind of ignored because of their lack of understanding of the disease.

I get my shots every 14 days. Of those 14 days, 8 days I usually have measurable side effects. I will only have about 3 days where I feel well enough to do more than I absolutely have to do to keep my family going.

Days I feel good enough to venture out I have to be carful. Carcinoid Syndrome is triggered by many normal every day things. Which makes leaving the house difficult. One of the big triggers is exertion (physical exercise) even a trip to the supper market to pick up a few things will wipe me out to the point where I am wheezing & have abdominal pain to the point of doubling over & I will be sick for a few days after. Other triggers for me are every day stress, air quality, temp. and food. Honestly everything triggers this disease as it is directly affects the endocrine system (thyroid, pituitary & adrenal glands as well as the pancreas, heart, lungs, liver & kidneys).

The fact that it is incurable I am not fond of either. Sure I will live longer than a few years, more like anywhere from 15-25 years (from onset of syndrome), but it will be slow, nasty & painful.

The biggest thing I really hate is when doctors and others say, “Well you look so good.” I understand they mean well and all, but I always want to say “Well I don’t feel all that great, but thank you?” I honestly believe the Dr. forgets I am sick sometimes as well as so many in my life. I think maybe because I really try not to complain much. I try to lead a relatively normal life or as normal a life as I can. Some days though I really want to just whine about how awful I feel. I would really like to lie in bed some days too, but with my youngest (PA) that is not a possibility ever. I don’t want people to feel sorry for me but I would like people to understand that I am not brushing them off when I call last minute & say I really don’t feel well.

I would love to leave the house every day and be the “FUN” mom. I want to take PA to the park. I want to be able to take my older daughter to the mall & just window shop. I use to be a very active person. We use to do so active things as a family like hiking and tae kwon do. I am also one also one of those weird people who enjoy doing housework. I would love to be able to just get up and clean my house with out having to wonder if I will end up in the ER because I did too much. Simple things like doing laundry or doing dishes are almost impossible most days. I often have to rely on my husband & older daughter to do them for me.

Honestly I would just like to have my life back…

The House, A Yellow Rose Bush & My Grandma

A little over two years ago my husband, daughters & I were living in a very small run down apartment in Silicon Valley. It was a very unhealthy place we named it the sick house. It was where we had so many bad things happen. I was diagnosed with a terminal cancer. My husband had his surgeries & my youngest was diagnosed with epilepsy, PDD-NOS, SPD & ADHD. For many years I thought we would never escape it. We had many chances but none panned out. I had all but given up until I got an email from someone whom we had discussed renting from the year before.

He had recently purchased a house & out of the blue he contacted us. He said he had bought it and thought we would be perfect for the house. I was interested and asked him to send me a picture. With in minutes I had a picture. The first thing I noticed was the yellow rose bush.

I know that seems a bit strange being it was the house I was interested in. However as soon as I saw the rose I was hooked. See I grew up very attached to my grandma & gampa. Off and on through out my child hood I spent much time with them. My grandma and I were very close and she loved yellow roses. She watched my older daughter before she was not able to any longer. Before ALS took her life from us.

Back before my husband and I were married, I lived with them. My husband did not like where I was living at the time so he moved me in with them the weekend after we met. I guess a 4x8ft dirt floor shed wasn’t the ideal place for me to live. Yes I lived in a shed, while my biological mom lived in a converted garage that I paid for.

So I was looking at this picture I was sent of this house and I heard a whisper in my ear “This is where you are suppose to be”. I honestly believe my grandma whispered this to me. My proof was the yellow rose. We really had not looked this far inland and I was not crazy about how hot it gets here, but this is where we were supposed to be. I told my husband this & he was a little hesitant but he trusted me. We made the decision after seeing it once. Was a long trip just to see the house 6 hours round trip from where we were living at the time. My husband fell in love with this house too.

Was just a matter of weeks and before we moved. I organized 2 garage sales to get the money we needed to move. My husband sold our second Rodeo. We moved on one of the hottest days that year. I had called ahead & arranged for some people from our new church to help us unload the truck. All in all it worked out pretty well..

Now when we moved PA was non-verbal & hardly walking. She was 2 and just 24lbs. After we moved she really started to thrive. We were able to get her into early intervention & some serious therapy. She started to gain weight and make some real strides. I honestly think the apartment was holding her back. After a few months of therapy she was running.

I still miss where we lived before. Well the area anyway. I loved the bay area & everything about it. After all we spent the first 16 years of our marriage there. I know we had to move and I am grateful for the opportunity we had to move to a nice house. This really has been a good move for our family even with all the hardships we have endured over the years we still have a darn good roof over our head **laughing**

Play Date for PA = Sleepless Night for Mom

Well the play date did not cause the sleepless night. Actually the thought of the play date is causing the sleepless night for me. See I LOVE the fact PA is having a play date & also that she has been talking about this for days. I think it is wonderful.

See PA does not always play well with others & frankly I do not know this lovely lady very well. I mean I know her she goes to my church & she is a wonderful mom to four beautiful children. Most people adore her & she is a very pleasant person. I actually like her & would love to get to know her better.

Then what the hell is my problem right? Well yes, see it’s complicated. Truthfully not so complicated. I talk all the time about how PA has a hard time with playing with kids. She doesn’t play with them. More like around them. She loves to be around kids, but has a hard time relating to them.

Until tonight I never thought of my own insecurities with other people.

As a kid my father was in the Army & we moved around a lot. I never learned to make friends. It never really interested me. The fact we moved a lot made it so much easier because it didn’t matter if I didn’t make any friends at one post, because well we were only going to move. It didn’t matter. I also had 3 sisters at the time so if I had to have a friend well I just awkwardly attached myself to one of theirs. I faked it much of the time just so I would look like I fit in.

Come on we all have things we struggle with. I have a really hard time relating to most people in person. On line I can be just like everyone else or I think I do a pretty good job anyway. As a kid I never fit in. I was always the one picked last for games. I was always just a little slower than most and was the kid who got beat up on the way to school every day. Yes, this really happened.

It was the longest time we had been at any one post was in Germany On the way to school every morning this kid from down the street would beat me up. Keep in mind I had 2 sisters I walked to school with every morning. One of who is 11 months younger than I. How did I get separated? Simple, I always lagged behind saw something shiny & inevitably would lose track of time. I was often late to school because of this.

One day this kid got a god shot in & knocked me out. People got worried, as I was later than normal. Someone found me in a little park that was on the way to school. MP’s were called & I ended up at home trying to explain what happened.

I am still unsure how this really went down, but without knowing months earlier accidently hit this kid over the head with my metal roller-skates. Well I may have known I did this, but honestly forgot to apologize. I was not the most tactful child. I really don’t remember much of the detail but I was made to apologize for hitting him over the head. I don’t remember if he apologized, but he must have.

As I grew up I was able to learn how to make friends, had relationships even got married and stayed married (I have a very patient husband who puts up with a lot). However even with the years behind me of having successful relationships (many more unsuccessful than not) I still lose sleep at the thought of getting to know someone new.

So tomorrow this lovely lady is coming over with her 4 wonderful children & here I sit tonight freaking out over the possibility of saying something completely inappropriate or doing something so awkward that this poor woman might never want to be in the same room with me again. I know this sounds completely unrealistic, but a genuine fear for me right at this moment. I know full well it will be fine & the worst thing that will happen is I will dominate the conversation and she might think twice about spending any length of time with me for a while.

Just goes to show in some areas we may not be so different from our children.