Just Me :o)
Wife of 20 yrs & mom to 2 girls. My older daughter is 19 and is ADHD, my youngest is 7 Autistic, ADHD, moderate Hypotonia, SPD & food issues. Myself, I am fighting Neuroendocrine Cancer an incurable disease. Life in our house is never boring. On twitter I am @min_svart_ros
Please do not feel you have to donate, but would be appreciated,. Anything donated goes to Medical/Transportation Thank you
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- Help, My Little girl has NET'S cancer | Medical Expenses - YouCaring youcaring.com/medical-fundra… 7 hours ago
- I May Have Cancer But My Life Looks Pretty Normal tjhirst.com/pondering/i-ma… 13 hours ago
- Marketing NETs--Draft Plan--part 13 walkingwithjane.org/2014/10/29/mar… via @HarryProudfoot 1 day ago
- Marketing NETs: We need a plan--Part 12 walkingwithjane.org/2014/10/28/mar… via @HarryProudfoot 2 days ago
- @stangoldberg Thank you I will take a look. 2 days ago
About 3 years ago I started to accumulate a bunch of vintage costume jewelry, charms and stuff to make various types of jewelry. My intentions back when I started collecting all this were a bit different. I ended up storing it all away after my cancer advanced and I got really sick again.
My oldest daughter was cruising Pinterest one day and came across a picture of a brooch that looked just like one I had gotten for 5 dollars, when I was 14 at a craft fair. It was selling for a lot more than that on Esty and I was really surprised. I was very cheaply made and did not look that good either. That got me thinking that I could do much better and could use the money to help with medical expenses.
I puled out what I had stored away, then invested in some old pocket watches and watch movements that no longer worked. I started to put together some unique brooches. The first 3 or so I took pictures then just went around showing people to see what people thought. I wanted to get an idea of people reactions. Mainly to see if people would even want to buy them, and I got some great reactions.
I am hoping this will help me take care of medical expenses. I am having to spend more time in the hospital and my therapies and medications are so pricey. I can no longer work a traditional job, but this is something I can do with no overhead. Besides I love to do it and I can even do it when I am sick. With the holidays coming up I think these would make great gifts. No piece is the same and I do custom and also can design for men or women. Just ask. I would love your business. I do take Paypal..
I have a Facebook page. If you are interested you can contact me here, on twitter or on my Facebook page. Just a side note: The brooch in the upper left is already sold.
- 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.
A few weeks ago, I wrote about my experience with the gallium scan at Stanford and the procedure I had done. What I did not write about were the results and what it means for my future.
They were not able to use any samples from the biopsies taken from my pancreas. Apparently that is common because the needle they had to use is so small and the area was so hard to get to. There were just not enough cells in the sample. They will have to try again in 6 months to a year to be able to biopsy again. The main reason I have to wait so long to have the procedure again is my Dr. is afraid I am not strong enough at this point. The pros do not out weigh the cons. He feels I would end up in hospital for several weeks after and my health would decline.
What they did find was I do have several small tumors (too small to biopsy at this time) as well as moderate chronic pancreatitis. Now I get to drastically alter my diet for both issues. If I don’t alter my diet I will end up very sick and not able to eat at all. I would then be hospitalized and be put back on TPN or be tube fed. Changing my diet should mean less time in the hospital. I still have and will have lots of pain when I eat and I do have to take pain medicine, but as long as I stick to the diet I am much better.
The diet I have to follow is not fun and I no longer get to eat out. I had to cut out all dairy, sugar, gluten, soy, and nuts of any kind or in any form. Had to cut out as much fat as I can (no fried food) no red meat, pork, chicken & most turkey. I can have some fish, but no shellfish because I am allergic. I can’t have tropical fruit, citrus, tomatoes, avocados and anything in the cabbage family. Also have to be carful with beans and all vegies have to be cooked well. I can have a few eggs here and there. I also have to be carful with potatoes (no skin on them) and minimize how much white rice I have (brown is preferable).
Seems pretty restrictive huh LOL… Well it is, but I am learning to work with it. When I explain to people how I eat just to simplify it I say that I eat a vegan, GF diet with no nuts. It is more complicated than that, but people seem to be able to grasp and accept that a little better.
The other thing my GI specialist told me no more over the counter pain medicine. He said it will aggravate my condition and he wants to know exactly what I am taking at all times. He went as far as to put in my chart allergies to ibuprofen and Tylenol products. Just so no other Dr. would order them for me if I were hospitalized.
He also put me back on octreotide injections to help control the Carcinoid Syndrome symptoms. This has helped greatly. It has made it so I am able to get back to doing some of the things I use to. Things like cleaning house and playing with my youngest daughter. It has made it so I am not as sick all the time.
I am grateful for this even if it s just a few days out of the week. I am not as well as I have been in the past. He explained to me that this is chronic and progressive. It is something I just have to accept. I should enjoy the good days and rest on the bad days. I should not dwell on how awful this disease is and how it is robbing my health and me of time.
So my focus now is one getting stronger and make every day count. We do struggle with bills and trying to make ends meet. That’s the other thing being terminal and in and out of hospital is expensive and well bills pile up. Pretty sure we will not be taking a vacation anytime soon or ever. I had wanted to be able to see my mom and her family again, but don’t think that’s going to happen. At least we have social media LOL…
Things have been so crazy since the first of the year and I feel really bad about not updating my blog. However after you read this you may understand. It really has been crazy. The first week of the year I sent my oldest daughter to BYU Idaho for school. This was very hard for us as she was my help. Also she was PA’s big sister and best friend. This left a huge hole in our life. The first couple months very hard for all of us, but we made it.
After that, I finally got to see a specialist on Jan. 30th at Stanford University Hospital. After looking at all my scans and reading over my extensive medical history, he concluded I do have Carcinoid Syndrome and he felt they needed to find the tumor/s. I was told he was going to try to get me into a new clinical trial they had there at Stanford, which is the Gallium 68 scan.
The Gallium 68 is the newest in diagnostics for NETs cancer. It can detect tumors that are too small for MRI, CT or even Octreotide scans. He said he would call me in a few days to tell me if I qualified. I got that call the next and I got the scan on March 5th. This diagnosis is what I needed to get my own doctors to start treatment again.
The scan was easy. It was done in a PET scanner. Only took about 45 minutes for the actual scan. I did have to wait quite a long time after getting the injection with the isotope. Which made me so very nauseas. A little odd because most do not have any side effects from the isotope its self. After the scan I was free to go. The isotope has no lasting radiation or half-life at all. You can see more information about this trial in the link. http://clinicaltrials.gov/show/NCT01980732
I got the results a week later. There was uptake seen in the head of my pancreas. That is how they see tumors on these scans. I then waited for the tumor board at Stanford to meet and decide what should be done next. They decided I needed an Endoscopic Ultrasound of the pancreas with biopsies taken. I would have this done by my doctors in a few weeks.
Shortly after that the manager of out apartment complex told us they were letting us out of our lease. We had to move at our earliest convenience. We had only been there 10 months. That apartment had turned into a nightmare. We are actually now in process of bringing charges against them for discrimination and breaking fair housing laws.
We did find a new place and it is a very nice. So much better than the last place. We finally got moved in and settled. I did spend much of the time sick while we were moving and getting settled. We are all happier here. PA is so very happy in her new room. She is looking forward to her birthday next week and for her sissy to get home at the end of the month.
I was very sick during the whole move and shortly after I did finally have the EUS (endoscopic ultrasound) that Stanford wanted me to get. After the procedure I get very sick again lost 25 pound in less than 2 weeks and ended up in the hospital for a week. I have been recovering since. I will write a follow up post about the results of the procedure and what it means to my treatment and my life.
Things have just been so crazy. The good part of moving is our new place is AMAZING! We love it here. PA LOVES it here. She, not once slept through the night in the last place. Here she has slept through the night from the first night.
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…