Tag Archives: Cancer

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

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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…..

 

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. th18L5ZWLY

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.IMG_20151006_023605 IMG_20151006_023204

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

 

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…

Undulations (Bumps in the road) Heart Problems

It has been 2 weeks now since I was in the hospital and since I saw the surgeon and was told she could not do anything for me until doctors decided what they wanted to do about the tumors in my pancreas and kidneys. I went for a follow up with my regular doctor. Was really hoping it to be uneventful. It was anything but that. He ended up doing an EKG. Nothing new for me because well they always run them. I have just gotten use to them doing them. As it turns out, that is not normal. Really?? You mean to tell me not everyone gets EKG’s done on him or her more than once a year or just when he or she are having problems?

Anyway, my doctor had the nurse do the EKG. Then comes back in the room  and tells me that he is afraid I will have a heart attack… Excuse me! I have fabulous blood pressure (in fact it is very low, thank you very much); I have low cholesterol levels and low triglycerides. I have none of the risk factors for heart disease (except that I have cancer). Then he tells me it is a matter of my heart doesn’t get enough oxygen (or part of it).

So now I wait for him to get back to me about more testing and about seeing the cardiologist again. I acted surprised, but reality I’m not. Carcinoid heart disease is very real and just another part of this cancer I am battling. It is just a part I did not think I was going to have to deal with just yet. However it has yet to be determined if this is what it is or not. So until it is I will wait to make any assumptions on what I think this might be.

cropped-picture-to-sum-up-the-week.jpgAs of right now it is another bump in the road and I am sure I will find out soon (or at least I hope).

Tumors, more tumors and a hernia Oh my…..

It has been since the beginning of December that I have posted anything new. Since then so much has happened in my life (not all good). Christmas came and went with much of the time all of us sick. Was somewhat uneventful and humble really. We did not have much in the way of extras, but we had enough to make it nice.

I had been doing well with the diet I was given by my GI doctor. However after Thanksgiving I started to have difficulty with food once again. I found myself relying on strong pain medicines daily just to get myself through the holidays. I did tell my GI doctor, and he determined I was suffering from an intestinal infection. I got antibiotics and sort of got over it. I also got a power port put in my chest back in Dec. IMG_20150113_161128 IMG_20150120_160022

I was sick for about a month then I started losing weight very quickly. I think I lost about 15 pounds in less than 2 weeks. After that I started not being able to keep any food down and a few other symptoms (a little to graphic to mention). I ended up in the ER and after spending 14 hours in the ER they said I had a kidney infection, put me on antibiotics and sent me home.

I went back to my doctor 2 days later and he said there was no way I had a kidney infection and I had no business fending for myself out of the hospital. He had me stay put and made a few calls. I ended up back in the hospital (the cardiac unit) that afternoon and was there for 5 days. This was the monitor I was hooked up to so they could monitor my heart. IMG_20150219_145058

Turns out I have several tumors in my kidney along with the ones in my pancreas and now an incisional hernia. I now have to fight my insurance once again, because they do not want to do anything for me. They sent me home with some pretty major seriously regulated pain medications (one of which is a patch). They are trying to make me comfortable I guess. Last time it took me 6 months to get them to pay for one visit to Stanford. I wonder how long it will take me to get them to do anything for me this time. I wish I could just pay to go to Stanford myself, but we are having a hard enough time just putting food on the table and paying everyday bills. Thinks have been really hard for a couple years now, but the past few months and for the foreseeable future it is going to be even more so challenging.

I go back to the doctor on Monday to see if they are going to do anything for me.

Fingers Crossed

We did get to go on an outing as a family (minus Shann because she is up at BYU Idaho). We went up to Daffodil Hill. Here is a picture we had taken. IMGP3227

 

Did you know? Carcinoid/NETs Cancer FACTS

  •  Over 90% of all Carcinoid/NETs patients are incorrectly diagnosed & treated for the wrong disease.
  • From initial onset of symptoms the average time to proper diagnosis exceeds five years. Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why it is so difficult to properly diagnose it early.
  • More than 11,000 new cases of Carcinoid/NETs are diagnosed each year, which now means that NETs cancers are twice as common as pancreatic cancer.
  • It is considered a rare disease, and most physicians are often unaware of current diagnostic & treatment options. 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 a common rather than an exotic cause for disease. This isn’t ignorance as much as it is a lack of experience and exposure.
  • Many physicians still believe that carcinoid tumors are benign, slow growing and do not metastasize. Fact is when most are diagnosed their cancer has spread to distant parts of their body, and they are in fact stage 4 and incurable at that point….
  • Irritable Bowel Syndrome (IBS) and Crohns disease are two most common misdiagnosed conditions for patients with carcinoid
  • Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitations, weakness, Heart valve lesions, cramping, telangiectasia, cyanosis, arthritis, pellagra, skin rash, heartburn and weight changes are the most prevalent carcinoid/NETs symptom’s
  • At least 110,000 people are living with carcinoid/NETs in the United States. I could not even venture a guess as to how many in the world.
  • Carcinoid/NETs Cancer is referred to as “The Good Looking Cancer” by the medical profession.

Most who suffer with this don’t look like what most think of when you say cancer patient. Traditional cancer therapies don’t work on this type of cancer. Most of us will not loose our hair (some do). Most of us look just like everyone else. Some of us will loose weight, some will gain and there will even be some who stay the same. You know that saying, you can’t judge a book by its cover. Same thing you can’t say a person is well or just by looking at them. We refer to ourselves as zebras, because of the rare nature of our disease and the saying that doctors are taught in medical school I mentioned earlier. “If you hear hoof beats, think horses, not zebras.” We are a heard of zebras. We may blend in, but we also stand out in our own unique way.21906stripesmakeusunique