Tag Archives: humor

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. 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.IMG_20150815_170139IMG_20150815_170031

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.IMG_20150814_094116

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…

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A healthier lifestyle

Several months ago I went back in for some routine tests & to figure out why I had been so sick. Since I was diagnosed with neuroendocrine cancer almost 7 years ago now I have had issues with food and absorption of food. I have had to cut out many foods I love because they trigger what is called carcinoid syndrome (CS). I have adapted my diet over the years and I do on occasion cheat. I will have a piece of chocolate every 6 months or so. I had started to not be able to keep food in me and I started dropping weight. By it’s self is not a bad thing, but not 20 pounds in less than two weeks.

I went in to see my doctor and after I got the test results back and he was a little more than concerned. Needless to say he was about to turn my world up side down. He said there was not much more they could do to treat the cancer, but he said we could try some diet changes that might help the health of my liver & other organs. According to tests my liver was not doing well (the type of cancer I have attacks the liver). He told me he wanted me to completely change the way I was eating to see if it would have any effect on how I felt & if it would make any difference on the liver tests. He told me to eliminate all gluten, GMO’s, additives & preservatives & go completely organic. I just looked at him like he was crazy. For me it seems almost (I stress the almost part) impossible not just because of cost, but my gosh I do not see how I can eat out. I am all for eating good healthy food that is good for your body and all but come on… I do still like to eat a hamburger at say Red Robin every once in a while. Or go to Denny’s for a family dinner. On this new diet I fear I will never see the inside of a restaurant again.

He went on to explain all the reasons he thought this would be good for me and well he made some really good points. I am not sold on all of it, but figured I would try to implement parts of it to see if it would make a difference in how I felt. I asked him if he had to pick a part of the new diet he felt would be critical for me to do what would it be? He said at the very least to go gluten free and cut out as many preservatives and additives as I can.

I figured I could handle that. It has proven to be more difficult than I thought. Gluten as you know is in just about everything and you really have to real labels on everything. Over the past two months I have done pretty well. I have done quite a bite of reading on cooking & baking gluten free. I have tried a few recipes & altered a few (just because I can not leave well enough alone). I am still figuring out what I can and cannot eat. I still have quite a few restrictions on food just because of the carcinoid syndrome. Add those to this new diet and well it would seem to many people that I am very limited. I guess I am in so many ways, but I am learning to put variety into my diet where I can.

Now I am not perfect by any means and I do have a huge obstacle I am still trying to overcome. That one obstacle for me is Diet Coke. I know it is probably one of the worst drinks a person can drink. I know this already and I do not need to be reminded thank you. I have cut way back. I am limiting myself to one can a day and we are not buying the name brand. That way I am not as tempted. I actually don’t like this off brand diet pop and I think the only reason I am still drinking it is so I do not have the cold turkey effects of the caffeine. Thinking by next week I can be off the pop completely (I really do not like this stuff LOL).

After two months on this diet I have honestly not cheated. I have had 2 times where I have had something I thought was gluten free and turned out it was not. I do know that when I had the gluten I knew it and actually became ill from it. Which prompted me to go back and check the ingredients to make sure & yes there was gluten in what I had eaten. I have not been tested as of yet (thinking maybe I should) but I have noticed I have not had as many food related issues. I also have dropped about 20 pounds and kept it off. Of course I have a more to go in that department but it is a start.

I think I am convinced enough to continue with the gluten free diet. I have seen some positive changes, nothing earth shattering but convincing enough to keep going. I do like the idea of getting as healthy as I can get. I know it is not going to cure my cancer, but I would like to have a good quality of life.

I’m bored & was accused of hovering

I’m bored & my husband has accused me of hovering. I asked him what I should do and he told me to write a blog post about being bored. So here goes and for the record he cannot come back and say anything because he told me to do this.

I’ll admit it I don’t entertain myself well & after I have been sick for a few days I need to get out to do something. I already picked up the living room & have dinner in the oven and to set the record straight I did try to entertain myself. I went on to Facebook no one really was on line so I could not chat with anyone. Unless you play games (which I do not) then Facebook becomes boring after about 5 minutes. I went onto Pinterest too & well nothing was peaking my interest there either. I trolled Twitter for a bit & you guessed it. It did not really pull me in either. I also thought about some of the unfinished projects I have, but soon realized I needed something for just about everything so I was back to not being able to go anywhere. Besides sometimes I just want to be entertained. Is that so bad?

See everyone in my household all have something they go & do during the day. My husband has school so he gets out most days to study at our local Starbucks and has school every Wednesday night. My 17 year old has High school and also has church activities every Tuesday night. Even my 4 year old has school most days. Even if it is just 4 hours a day even she gets out of the house.

The only time I get to get out is when I can con someone to take me.

Unfortunately I cannot just get out of the house on my own. See I am not able to drive any longer because of health and vision problems.  I have to depend on others for rides. Usually when I am bored & want to get out to do something, I just hover around my husband & he usually gives in. Right now I can’t think of anything to do that doesn’t cost money & somewhere I don’t have to walk too much. Being it is getting ready to storm outside he doesn’t want me out in it. I feel like a little kid stuck indoors watching the world go by.

Of course there is always housework **sigh**

The Shopping Cart

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.

A Day with PA in Pictures and A Few Words

I thought I would do something a little bit different. This is a typical day with PA. Not everything we do together, she does lots with her dad and sister. We try to do things to help with her various developmental needs. We do things a little different from many families with special needs kids, but this works for us right now.
I just thought you would like to see a day with PA my way….In pictures..Enjoy 🙂

This is what I see when I can focus my eyes in the morning.

Then I go check to see what PA has put on her “doll” the Buda.

Before I even wake PA up I need my one vice my Diet Coke.

Mornings are never good for PA so I skipped the getting ready part & went directly for “Ready For School”

On our way out to wait for the bus we walk through the garden to see if there is anything we need to pick.

This starts my time. I usually have lots to do and almost NO time to do it. I am a frazzled mom. I start lots of projects and almost never complete them. I also do try to do housework during this time. Some days I even get to go out and do errands.

Then PA gets home & it is snack time. She has a very narrow range of foods she will eat and this is about it.

We do crafts. Play dough is her favorite. We also do painting and coloring.

We also work on self-help skills. PA is just now getting to where she will put on socks and shoes. She thought her dads black dress socks would go with her Sunday shoes. Backwards no less. I had to take a picture because it was number 1 an accomplishment for her and number 2 is was so darn cute!

This is what we call “going shopping”. This is how PA will get her food. We have had to make it fun for her and interesting. I picked up this shopping cart last year when we were having issues getting her to eat and it has done the trick. We still have many days a week where she will not eat, but she is doing better.

It’s play time till bed.

Story time before bed.

Then while she gets her story we also do her medicine. We also do this in the morning too. Also includes her nebulizer treatments morning and night as well.

Before bed we also set our clothes out and get her backpack “packpack” as she calls it.

PA Sleeps for a few hours then she is up again. She gets up 2-3 times a night to have her drink, because she won’t eat the right or enough food in one day.

This makes for long days for me. I don’t sleep well and have not since she was born.