Tag Archives: health

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

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…

A Renewed Hope, Just in Time for Christmas

In my last post I left off that….I had just received the letter from my insurance stating they had denied my appeal for the third time. At the same time I got a letter stating that they had to send it out to a third party company that Medicare contracts to for a final decision on the matter.

I was sure it would be denied once again. I had researched this company and they had an 85% rate of siding with the insurance companies. It really did not look good. Not even a week passed (two days before Thanksgiving) and I got a phone call from a lady and it took a couple of minutes before it actually registered in my brain what she was telling me. She felt it was critical I know right away that they had decided in my favor to send me to Stanford.

Like I said it took me a few minutes before it registered in my brain. This was a HUGE win for me. This is what I have been fighting for the past 7 years.

Now begins the process of getting my records there. The past several weeks I have been working with people at Stanford to figure out who will be the best person to see.

I have filled out paperwork to have all my records from all of the facilities I have been seen at, sent to Stanford. This process alone will take my insurance a couple of weeks. I have been seen at both Northern California facilities and Southern California facilities. I was seen at a total of 6 different facilities total. At least they put everything on disk now. If they did paper records still it would be upwards of 4,000 pages or more not including images & films.

I will be following up this next week to see if they have started to get records and to see when I might be able to schedule my first appointment. As of right now I think my insurance thinks they can get away with just once consultation, but I know Stanford is going to want their own labs and maybe even their own scans. I may have to go back and fight my insurance to give me more visits and such. Not sure how that works, but seeing I have come this far I should be able to do this.

I think our biggest hurdles now will be the logistics in getting to and from Stanford. Then add care for our daughter while we make the trips. The drive there and back is 3 hours each way (with no traffic) and with my oldest daughter leaving for college in 2 weeks we are going to need to get a sitter. This is just going to take some serious planning and we are going to have to add extra expenses into our already stretched budget.

Even with the extra expenses, which will be very rough on us as well as the logistics of it all.  This is a huge deal for me. I will finally get the care and treatments that I have been otherwise denied up until now. I will finally get to see doctors who know about Neuroendocrine/Carcinoid Cancer (NETs Cancer). This will not mean a cure for me, as there still is not one at this time. However what it does mean is I will have a higher quality of life and possibly a few more years with my family. That means more than anything right now.

Now I can enjoy Christmas with my family, then send my lovely daughter off to BYU Idaho to school. Thank you for sharing the ups and downs. Hope your family has a wonderful holiday & Merry Christmas…

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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.

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We finally landed……

Much has happened since I blogged last. We did finally land and got moved into a new apartment. Of course we had to spend 3 weeks down in southern CA waiting for the apartment to be ready.

 

We were able to make a trip to Disneyland (a very generous graduation gift to my older daughter, from a very dear friend). Was an awesome trip. PA was in heaven and LOVED all the rides. Her favorite was Star Tours & Space Mountain surprisingly enough. We were able to spend some much-needed family time together. My husband did make me sit in a wheel chair to get around though. I was not feeling well.

 

Turned out a few days after that I went back into the hospital. I could not eat and was in horrible pain. I ended up having a tumor taken out of my bile duct & had several stints put in. Apparently my bile duct was completely blocked with scar tissue and the tumor. Then the next week I recovered before we finally were supposes to come home.

 

The morning we were supposed to leave my husband went down the stairs (was 2am and dark) and slipped down the bottom 3 or 4 steps. Instead of leaving we got to take another trip to the ER. Only this time was to see if he broke his elbow. Turned out was not broken but badly sprained. He also hurt his back again and is going in this next week for an MRI to see what damage he might have done to his back. He had 2 back surgeries a little over 10 years ago.

 

We were able to make the trip back the next day. Of course it was raining, but with the help of my in laws and my older daughters boyfriend & his brother we were able to get it done.

 

It has been a rough month. All of us have had to make adjustments living in a smaller place. Poor PA has had it the worst. She is still not sleeping and is really making life hard some days for me. I am hopeful she will settle down soon.

 

Now a month later, we are a little more settled. This next week I will get PA registered at her new school. I also have more testing in nuclear medicine coming up (an octriotide scan). Then I also have appointments with specialists. I also have another surgery the last week of Aug. It will be a busy month. I hope to update a little bit more often.

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.