Tag Archives: more rambling

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

Link

Helping People Understand NET’s Awareness Day

11.10.2010

NET’s Awareness Day (Neuroendocrine/ Carcinoid Cancer) is coming up November 10th.  I thought would do a post on symptoms of Carcinoid syndrome (caused by NET cancer/Carcinoid tumors). Along with that how it is so often miss-diagnosed as IBS or Crohn’s disease.

Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why they fail to catch it early. However as time goes on and traditional cures for IBS & Crohn’s fail to work. The patient gets even more ill and the doctor has a choice. He/she can continue to search for the real cause or as in most cases they just continue to treat as IBS and or Crhon’s.

Many people go for 5 years or more (in my case it was 6 years) before being properly diagnosed. Most are stage 4 by the time they are diagnosed, and by that time it has spread to distant regions. There is no cure for Neuroendocrine/Carcinoid Cancer by the time it has spread. The reason most are stage 4 and it is caught so late is because doctors don’t look outside the box. They don’t want to think maybe it could be something else more rare.

The reason most doctors do not bother to look into more rare causes for symptoms is one thing they hear over and over in med school.

“If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for common rather than exotic causes for disease.

Most of the time people are finally diagnosed when they have Carcinoid Syndrome (after it has spread). The syndrome symptoms can actually be very alarming and scary.

Carcinoid Syndrome Symptoms:

  • Flushing
  • Diarrhea
  • Heart valve lesions
  • Cramping
  • Telangiectasia
  • Peripheral edema
  • Wheezing
  • Cyanosis
  • Arthritis
  • Pellagra

I was going to explain all the symptoms, but there are sites out there that would do a much better job at it. There are so many websites out there now dedicated to helping people with Carcinoid cancer (just wish there were more doctors). When I was first diagnosed there was very little information out there.

The website I am using for this is CarcinoidLink. It is set up specifically to help people understand Carcinoid syndrome and how to manage it. Also it has downloadable pages for people to track symptoms so they can take them in to show their doctor. Helps them know how the therapies are working or not working.

The biggest reason I wanted to use it for this post is because it is easy to find information and easy to understand. Here is the link.

Carcinoid Link:

http://www.carcinoid.com/patient/understanding/carcinoid-syndrome-symptoms.jsp

Please…..

Check it out and feel free to ask questions. Email me if you like. The more understanding and awareness we get out there about this the more doctors will educate themselves. They will have to take it more seriously. With education they will be able to recognize it and maybe treat it in people before it becomes stage 4.

Neuroendocrine/Carcinoid Cancer is a horrible disease to live with. Right now here in the US we only have a handful of specialists and very few therapies to help us. If this were Europe we would have so many more options. They have therapies and procedures to prolong life that have been used for 10 years or more, that here in the US are just now in clinical trials.

I know so many who have paid to go over seas for treatment because of the limited options here. Most would not be alive today if they did not go. The therapy I am referring to is called PRRT (Peptide receptor radionuclide therapand) requires 3 trips to Europe. Each trip costs 10,000 US dollars. Most that I know have done fundraisers to go (some have used their own money if they had it). However this is not an option for most.

Over the past 2 years I have seen so many (10 or so) die from this. Some I knew some I just knew of. Being this is a rare disease you kind of seek out others who have it. It is like our own community and when one of us Zebras (as we call ourselves) dies it really affects the rest of us.

We do our best and live life to the fullest. Our ribbon is zebra striped (as you can see above) for the zebra. Last year I made this graphic and it is true. Our stripes do make us unique. We are a proud few and we are survivors.

I made this graphic last year and it is true. Our stripes do make us unique.

21906stripesmakeusunique

No, I did not fall off the face of the earth.

Most of my friends and family know what has been happening since about September of last year. However those of you who may not know me so well I apologize if I just fell off the face of the earth. I have been having some major health struggles. I have been in and out of the hospital and had multiple surgeries.

I went into the hospital n October 26th of last year with simple stones in my bile duct. I say simple because for most people this would be taken care of with a simple ERCP surgery and then a day later you would be sent home. Well this being me it did not go so well. I ended up having 2 failed ERCP surgeries at one hospital over the course of a week. Then they transferred me to another hospital for a specialized ERCP with ultrasound. This was the beginning of a slew of mistakes and fumbles on the hospitals side.

After I got to the third ERCP surgery they noticed some fluid that had leaked out from my intestine and I was in a lot of pain. Normally doctors would monitor this situation for 24-36 hours before going in and doing more surgery just to see what might happen. After all it was not a huge amount of fluid that we were talking about. About 1:00am on Oct 30th a surgeon walks into my room after my poor husband who at this point had had maybe 4 hours sleep in a week had gone home to sleep. Says to me he is taking me into emergency surgery. I freaked out as he tells me if he does not go in now I will die.

I called my husband (he had just fallen asleep) told him what the doctor said and told him he had to come back NOW. He then in turn called my mom whom I had not been speaking to for a while (mostly over stupid stuff, but that it another story). My husband gets to the hospital just as they are wheeling me into surgery so he has no chance to talk to the surgeon to tell him he does not approve. I was so drugged I was in no way able to make any decisions.

I guess my mom showed up a little bit later sure she had made it too late and I was already gone (passed away). On the way to the hospital she had an overwhelming feeling she had lost me. As it turns out I did code on the table, but I came out of it. This happens in every surgery my blood pressure drops to nothing & my heart will stop (because of the carcinoid syndrome). Of course it is a little more complicated than that but that is the gist of it. I did come out of it ok. They ended up having to open me up from sternum to just below my belly button. I use the term “had to” loosely because as it turns out it was not needed.

I was in ICU for 36 hours then put into my own room. I think I was sent home a week later with a fever mind you. Over the weekend at home I get very ill again & less than 3 days later was back in the hospital with a 10.8cm abscess. I spent the next week again in the hospital and then sent home a week later with 2 drains this time to drain the infection from the abscess. This was just in time for Thanksgiving. We spent Thanksgiving at my sister’s house and had a wonderful time.

I think it was a week after than when I started to have problems yet again. This time food was not staying down was loosing more weight (I had already lost 30 pounds the previous 2 months). Found out they had damaged my pancreas & duodenum during surgery to the point where my new surgeon was skeptical if I would be able to function with out yet another surgery. Problem being this time was I was not strong enough to survive another surgery at that time. So my only option was for them to put in what is called a PICC line (like an IV only directly into an artery next to the heart) and gives me what is called TPN (IV nutrition). In other words I could have nothing by mouth except sips of water & medicine.

That was 6 weeks ago…. I am still on TPN with nothing by mouth because my body has not healed. Right now I am in a holding pattern. I watch my family eat meals, which really sucks. I want to eat. Everything smells wonderful looks wonderful yet it is all hands off. My surgeon and doctors are still unsure how well I will do if they go in and do the surgery that is going to need to be done. Let alone survive it. The after effects of this surgery are kind of scary as well. It is a very involved major surgery. They are not even sure which surgery I will need. I do know I will be in the hospital for a minimum of 14 days.

I have to say my husband has been a saint in all of this. I have not been able to do anything in several months. He has had to not only take care of the house and PA, but he has had to play nurse for me. I have to say he is darn good at it all. He has the preparation of the TPN and the changing of the tubing and everything down to a science. He is so good he flushes the ports for me with the saline and is so gentle and loving about it all. I am very lucky to have someone who is willing to do so much and make sure I am taken care of.

I wish I could say this was all over now and everything would be fine. However right now we are smack dab in the middle of it all. With so much still up in the air and the fact the doctors can not make up their minds I am having a hard time keeping it all together. I can honestly say this is one of the hardest things I have ever been through.

I am still around & fighting.

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer

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.

The Tell-Tale Hair

My husband and I were on our way to my Sandostatin injection (the injection I get every 14 days for my Neuroendocrine cancer) at the hospital when we started talking about my hair & the fact I had been growing it out. I told him how much better I liked my hair long, but that it was so much work that it takes twice as much time & energy to do something with it.  However, I have kept it short for the past 6 years or so purely for the wash & go factor. He posed a question to me that I had never really thought about. He asked me if I wished, at times, that the chemo would make my hair fall out. Hmm….

I have never really thought about it but in a lot of ways, yes, I do. To be clear, I am grateful that I am lucky enough to have kept my hair & that I “Look healthy”.  I say it like that because it really is a double-edged sword. The types of cancer drug I get don’t cause you to lose your hair, or if it does happen it is very rare. When I go into the oncologist’s office I don’t get the same treatment as some other people who are being treated for cancer because I don’t look like I am, so therefore it must not be that bad.

Typically cancer patients would get a form they filled out to rate their symptoms they have with their treatment, such as how tired they are, if they have nausea, or vomiting, and other side effects. I don’t get this form to fill out, even though I have many of the the same side effects as traditional chemotherapy patients, minus the hair loss.  The exclusion me feel as though my cancer doesn’t count and that my side effects are less important than everyone else’s.

The double edge sword is that sometimes people don’t get it. They see me for how I look on the outside and they have a hard time understanding I have cancer. That even though I look good on the outside it doesn’t mean I feel good.  I don’t want people to feel sorry for me, but just once I don’t want my illness to be questioned: “You look so good… You can’t be that sick.”

So yes some days I do wish my hair would fall out.

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**

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.