Short Update

Sorry - I really haven't been able to write a thing earlier than today.

Scott is still sick but improving.

There was no cancer in my biopsy but also nothing to help my other health problems. I did OK post op for a couple of days then took a downturn. I finally came home yesterday and feel a touch better, but have a new problem that I am going to have to deal with soon.

We are resting and able to get ourselves food - at least food we can eat - which is very limited right now.

Thanks to all who were concerned and I am very sorry that I wasn't able to let you know sooner.

Tomorrow is the Day

At this time tomorrow, I will be getting ready to go to surgery. I am not as nervous as I thought I would be.

Scott has been in the hospital since August 3rd with a bad Crohn's disease flare-up. We thought he was going to end up with surgery but he made it. His small bowel was blocked from all the swelling. He is finally on a regular diet, and they are discontinuing his TPN (total parenteral nutrition) today. He had nothing by mouth for over a week. He may be discharged in time for my admission.

I was afraid Scott would have surgery and I wouldn't be able to care for him. He is determined to get well to care for me. We may disagree a lot but there are very few relationships as close as ours.

Bentley has finally given me a name. We tried to get him to say names we wanted but he just couldn't say them. Yesterday he started calling me Mammae (mam mae). It is wonderful for him to finally be saying "my name".

 

Sorry the video is sideways. I don't know how to flip it.

Finally scheduled

Dr. Lee said he now has no idea what we are looking at as far as the tumors go. If all three of the blood tests had came back positive we would have known they were carcinoid tumors, but two of the tests were normal. Only the Chromogratin A test was positive. On the paper work he wrote suspicious for metastatic liver cancer, or hepatocellular cancer or neuroendocrine tumors.

Dr. Lee said he did not feel that he could get everything out any way but taking the whole right lobe of my liver. The tumors are both near major vessels and it would be very hard to stop bleeding if he cut one. He was also afraid he would not get clear margins if he tried to just take the tumors.

If my fatty liver is too bad, he won't be able to do the surgery. He will just close me back up. My liver has to be fairly healthy for me to tolerate part of it being removed. Because of diabetes, high blood pressure and obesity I developed the fatty liver.

The surgery will take 5 - 6 hours. I will be in ICU for at least one day. I will be in the hospital for 2 weeks. I will have an arterial line in my arm and a central line in my neck.. I will be given steroids before and during my surgery, and also a drug to help prevent problems if it is neuroendocrine tumors. They secrete a substance that causes anaphylaxis. (This is what we are hoping for the tumors to be so that I will not have anaphylaxis anymore.)

I will lose a lot of weight. I wouldn't recommend this as a way to lose weight, but that is OK. Dr. Lee says that I will be malnourished because I won't have an appetite and my liver will pull all the nutrients from my body to heal itself. I will have to have phosphorus IV because the bone marrow pulls it from my body to make new liver cells.

I have waited so long to get this scheduled that it is a relief even though this is the hardest surgery option we talked about. I chose to go ahead and have the whole lobe removed because Dr. Lee said that the tumors are in areas that are impossible to biopsy with needles and are not really accessible with a laproscope. He also said with liver frozen section biopsies, they are only 20-30% accurate. He has had patients that the frozen sections were said to be benign and then when the pathology report came back in 3 - 4 days, it was cancer. He also has had them say it was a cancerous tumor and then come back benign. That was too much of a margin of error to suit me. I don't want to go through having the biopsy and then having to go back in to surgery in a few days. .

Dr. Lee gave Scott paper work to be with me for 4 weeks. He is out of leave time, so human resources will be asking ASU employees to donate time for me once again. I am always amazed at how generous people have been. It is scary to think I will need him for 4 weeks. I only had someone with me 24/7 for 2 weeks when I broke my leg.

People always ask what they can do for us. Our friend Bart has already volunteered to do the yard work while I am in the hospital. Casey usually keeps Carmen, but if she can't we will need a dog sitter. Carmen can't stay alone and just have someone feed her anymore - she is a little old woman now and gets very upset when she is left alone. We can use help cleaning. I will need foods that will tempt me to eat after surgery that are very nutritious. I always prefer cake over steak, but will need to eat something that will help my body heal. I may need someone to check in on me after Scott goes back to work.

My insurance has to approve this surgery. I have had terrible experiences trying to get things approved, but hopefully I won't have to jump through hoops to have this surgery.

I am waiting for my breakdown. Every time I get bad news I handle it very well for hours to days, but then breakdown and have a pity party festival. If I call someone crying later, you know why. I think I look at this as a nurse, but then it dawns on me that I am the patient. This is happening to me. I know this is routine stuff to Dr. Lee. He does this everyday and it is just as routine as washing dishes. I trust him completely.

My surgery is scheduled for August 15th. I have 16 days to get everything I want to do before surgery done.

As far as prayers go, pray for my family and I to have strength to get through this and accept whatever the diagnosis is. Pray for all of our needs to be met. I don't believe in asking for this to be benign or a certain type of tumor. It is what it is supposed to be. I will do what I have to do.

Octreotide Scan denied

Dr. Lee called my insurance company himself and they still won't pay for my scan. They told him after the biopsy was back they would pay if it is carcinoid tumors.

If I do get a pathology report saying I have carcinoid tumors, I will have to have another surgery. This is going to cost the insurance company more money and put my body through more trauma.

I do understand them denying the scan. Because all three tests were not positive, they want to wait and see. Unless you know me, you don't know how sick I am.

If this isn't carcinoid tumors, the surgery won't cure my anaphylaxis. There is about .oo1% chance that they are hydatid cysts. If the tumors turn out to be something other than these two, they are an additional problem.

I will take one day at a time. I desperately want this surgery to cure everything. I really don't know how much more my body can stand.

Gossip

I really hate gossip. Even well meant comments are gossip. I really hate it when you ask people not to tell things and they do anyway and say "She doesn't want people to know," If you say that you have told, and if that person tells it to a couple of people, eventually everyone knows about it. The "gossip" everyone is talking about is me. I didn't want people running around saying that I have cancer, which is exactly what they are doing. We don't know 100% what I have.

Enough ranting!

In April my doctor ordered a liver ultrasound because of tenderness and enlargement. The ultrasound showed 2 spots in my liver. It was possible that these were hydatid cysts, which is a parasite which causes anaphylaxis.

A CT scan was ordered, and then an MRI. The first MRI was done without contrast, so I had to go back for another with contrast. I have two masses in the right lobe of my liver. They are not hydatid cysts or regular cysts. Several radiologists and surgeons have reviewed my films. The tumors didn't grow much between the CT and MRI. The docs say that the tumors have to come out. We can't wait and see what happens. (It seems like we are doing that anyway.)

Multiple tumor maker tests were done and my Chromogratin A came back 5 times normal. This test is for carcinoid tumors.

The doctors think I have carcinoid tumors in my liver, but of course, nothing is certain until a pathologist looks at them after they are removed. Carcinoid tumors never start in the liver; they metastasize (spread) from elsewhere in the body.

I am trying to get an Octreotide scan approved by my insurance. This is a head to toe scan looking for the primary tumor. I will be given Octrotide with a radioactive isotope which will bind to the outer lining of a carcinoid tumor.  The scan was to have started on Monday. The insurance wanted two additional lab tests done. I had those done on Thursday morning, but the results of one of the tests is still not back. They have sent my case to the medical director of the insurance company to try to get approval without the test results.

The importance of this scan is to find the primary tumor. If they can find it, it will need to be removed to prevent a recurrence. My hepatic surgeon wants to avoid me having more than one surgery due to my other health issues, so we are delaying the liver surgery hoping that we can get all of the tumors out in one surgery.

The masses cannot be biopsied by needle because one would require going through my lung, and the other cannot be reached by a needle. A needle biopsy can also spread abnormal cells when the needle is pulled out through healthy tissue.

The silver lining is that carcinoid tumors in the liver cause anaphylaxis in some people. If this is what I have, and it is removed, I hopefully won't have anaphylaxis anymore. This disease is called carcinoid syndrome.

Obviously, I am very anxious to get this done. The ultrasound was April 29th, and I am still trying to get this issue resolved. Patience is not my virtue.

Best case scenario with the surgery is that it will be done laproscopically. There will be 3 or 4 small incisions for the scope and instruments,  and one incision big enough for my surgeons hand. He will try to get the tumors out this way. If this goes well I will be in the hospital for a couple of days. He will not know for sure this will work until he is in there.

Worst case scenario is that I will have to have an incision down the middle of my abdomen. The surgeon says sometimes it is better for the patient to just remove half of the liver. There is less blood loss than trying to carve tumors out sometimes.

The risks for me are the wounds not healing, and the possibility of having a carcinoid crisis or anaphylaxis during surgery. Even though I am much stronger than a year ago, I am still not even close to healthy. I continue to have anaphylaxis on average once a week. Diabetes, high blood pressure and obesity make it harder for the incisions to heal.

I asked what I should be doing to prepare my body for the surgery, and Dr. Lee said eat. He said I may become malnourished after surgery because my liver will pull all of my nutrients trying to heal itself. Eating is not a problem for me as long as I have my multiple tummy meds on board.

Either way I will have a rough couple of weeks, but it will be well worth the pain to get rid of the tumors.

Since lots of people already know, feel free to tell the world. I am at peace with whatever it is. If you pray, ask that my scan be done as soon as possible. Until it is done the surgeon does not know the best approach to take with the surgery.
I will update the blog when I have new information so that you know what is really going on.

The grand babies are doing well. The newest is already giving Casey a belly. He is due February 7th. Bentley is doing home school preschool. He learns more and more. I am amazed every time I see him, Evan is doing well,

Daddy is feeding Bentley watermelon. Bentley hates it. He said yuck!

Evan is sleepy.

 

This is little _________________________ Harris. I am calling him Rasheed. We don't know the sex of the baby yet, but we are all saying he.

 



Cards

Here are some cards I have been making. Some are for certain people, and some are just stocking up while I can.

 For Bentley - his birthday is Sunday.

 Love purple and butterflies.

 Love this hot air balloon with bears in the basket.

 A one layer card using white ink. This was fun!

 For Kristen and Evan. I made this using Cricut Craft Room to weld shapes to make a shaped card. The face is a Peachy Keen stamp.

 I watercolor painted the flower. I had never done grown up water color and it is fun. I am also learning to paint free hand with them.

A Cricut chicken.

 More watercolor.

 Cricut and Stickles.

 Cricut cut Thank You.

I am pushing to do more, knowing that a crash is coming. It always does. That isn't being negative; it is being real.

Catching Up

Wow - Lots has happened since my last post.

Scott was in the hospital for a week for an abscess in his colon. He is fine now.

We had to have new sewer lines put in - all the way from the house to the street. Everything is back to normal minus grass in the front.

I am having more good days than bad. I have been able to do a little crafting and have pretty much been keeping the dishes done for Scott. I have came so far!

I am in bird watching heaven. My cardinals have stayed for the summer. I think they may have a nest in the forsythia out front. I hope to have some good pictures soon.

I have finished 20 books for the year. 32 more to meet my goal.

I will post some pictures of my crafts soon.

The Flu...

...has struck at our house. Scott is terribly sick. His doctor called in Tamiflu for him, and also a prescription for me in case I get it. Scott is miserable. He shakes so badly when he has chills and isn't able to keep down solid food.

Book 11 was Lord John and the Hellfire Club. I am not enjoying the Lord John novels as much as the Outlander series. I am almost finished with book 12, Lord John and the Private Matter. The Lord John books have a bit of humor in them.

House troubles

For almost 2 weeks we have been dealing with clogged sewer issues. At first we thought it was a regular clog, but after Scott and his friend Bart worked 16 hours trying to unclog it we decided it was something worse.

It turns out we have to have new sewer lines all the way to the street. No one was able to find where our current sewer lines connected to the city sewer lines, so we had to have a new tap. The city charged $1200 for the privilege of reconnecting to the sewer, even though we already had been using the sewer system. I will not get on my soap box, but I am appalled that current customers have to pay the same as someone getting a tap for a new structure.

We have been held up by our plumber being tied up on another job, and now the weather. As soon as everything works again we are going to be doing laundry round the clock for days, or at least as much as we can physically do. I plan on sitting in the shower under the hot water until it runs out.

I finished book 11.

 

This is the 3rd in the Outlander series by Diana Gabaldon. It is just as good as the first two. On Diana's blog, she says it doesn't start or end where you think it will, and that is very true. I listened to this rather than reading the paper book.

 

Based on the order listed on Diana's blog, I will be starting the Lord John series next. I want to read her books chronologically, and the Lord John series actually starts in the middle of Voyager.

 

We had a wonderful Easter; lots of good food and family.

 



Vile Disease

I hate this disease. I'm tired of my skin burning like fire with an itch that is almost like pain. Tired of swelling and nausea. Tired of my airway closing so that I cannot breathe. Tired of the drugs I must take to keep this beast at bay.

I'm tired of feeling bad for the doctor's who cannot cure me. Tired of the giving money to hospitals and doctors and mostly, the pharmacy.

I'm tired of not being able to sleep or not being able to wake up - never just normal.

I am tired of the weight I have gained since this beast came to live in my body. Tired of the belly. Tired of the double chin.

I'm tired of living with a fear that if I go outside my home I may be exposed to something that will cause the beast to raise it's head. Tired of being afraid for anyone outside my family to come in my house.
Mostly, I'm tired of not being able to work - not even take care of my house.

 I'm tired of it all.

So I escape. I take trips in my mind because my body won't allow me to go in life. I am just home from Scotland because I have been reading (listening to)...

 

 

Dragonfly in Amber. I really cannot convey how good this book is. It is a 40+ hour listen and you don't want to miss a minute. It is superb - really.

 

My latest history obsession is the Borgias. We watched season one of Borgia on Netflix. When we watch something historical I like to read some of the history to see how much of the show is true. The Borgia family is more interesting than the Tudors.

 



 Speaking of the Tudors...

 

 

 

 

I just read the Anne Boleyn Collection. This is a very informative piece documenting why the common conception of Anne Boleyn is wrong. There is research showing that Anne did not commit adultery and therefore her execution was purely a set up by Henry VIII and Thomas Cromwell. This is interesting for any English history fans, but if you aren't into Tudor history, skip it. You would be bored.

 

 





 

Last Saturday, Bentley took his first fire engine ride. We met my brother, Mike, at the fire department. Bentley was interested in the fire engine, but when Mike turned on the lights he wasn't very impressed. After his ride, he wanted to stay in the engine. He kept trying to get Mike and Daddy to put him back in there and would point at the driver's seat wanting to ride. He makes me smile. 

 



"Last of the Summer Wine: Home Comfort" & Sad Thoughts

I got to read Peggy Poe Stern's latest book on my Kindle. I have become addicted to that little e-reader. I find it hard to read paper books now. The Kindle lets me adjust the text size to my liking. With my eyesight not being what it was, this is a real advantage.

 

I enjoyed the book. It wasn't my favorite of Peggy's novels, but was still a good read.

 

We are covered in snow here on our little hill in Mountain City. We have had flurries all day but no real accumulation.

 

My latest immunology appointment was not my best. Dr. Kazmier had been to an immunology conference and had spoke to the "experts" about my case. It seems there is only one drug left to try, and it has serious side effects. We are trying stopping a large percentage of my medications. It is one last thing to try before I have to think about trying the bad drug.

 

I have had a really bad day. I had to use my Epipen for airway swelling. This one has wiped me out more than they had been. I think maybe the medications were helping with that. It will take a few days for the medications to fully be out of my system. It is a bit scary, but if I don't try this we will never know if it might be a drug interaction causing my problems to continue.

 

I know that I was not on all these medications when the problems started, and I was only on Benadryl at night when I had to go in the hospital the second time for anaphylaxis. I am humoring Dr. Kazmier because he just really does not want to start me on this last drug. I think we are both afraid it won't work, and also afraid that if it does the side effects will be devastating. He is really worried that it may push me into complete renal failure and require me to be on dialysis. It is really not a good thing either way.

 

As is usual for me, when I am faced with these big changes, it affects my mood. I really feel like I am a hopeless case. I know there are people who have been living with IA for years; one since the 70s. They know how I feel, but it is impossible for anyone else to completely understand. My friend Evelyn, who lives in Malaysia, suffers much more than I do. She just passed her 4 year IA birthday. Below is a link to her blog post on her "birthday". She expresses how this disease feels so well.

 

http://therighttobealive.blogspot.com/2013/03/4-years.html

 

Sad Birthday Evelyn. Wishing you a good night's sleep.

 

Invisible

Invisible is a song from Steve Earle's new album, The Low Highway, that will be available in April. I really like the video linked below.

http://www.cmt.com/videos/steve-earle/883098/invisible.jhtml#artist=400128

Scott and I have been Steve Earle fans since before we met. We drove to Knoxville and back in the snow to see him in concert years ago. Many of his songs are about current issues in society. His views aren't for everyone, but my Liberal friends would probably like him. He is famous here for his song Copperhead Road that mentions the Johnson County Sheriff's Department.

 

 

The Kitchen House was awesome. It is about an Irish indentured servant and the slaves she adopted as her family. It is a really incredible book that I recommend for everyone. I am anxious to see what Casey thinks(www.heelstohighchairs.com).

 

I purposely don't give many details about the books I read because I really hate it when someone spoils a book for me. I don't even read the jacket before I read the book if it has been recommended to me. I really like a surprise. I don't try to solve a mystery either. I just enjoy the story.

 

Everything is pretty much the same here. Spring allergies are in full force already. Tree pollen is not my friend.

 

 

 



Old Barns of Ashe: Along Came a Stranger by Peggy Poe Stern

Casey bought this book for Kindle and loaned it to me. Yes, this is legal because Peggy allows her books to be loaned. As I was reading I kept telling Casey it seems like I have read this before. It turns out that I had - this isn't Peggy's newest novel. It is a great story and was well worth a second read. If you like Bridges of Madison County, you will like this book.

 

Bentley spent some alone time with me today. Casey went to have her hair done so Bentley stayed with me. We had a great time watching birds, checking out the trucks that went up the street and just playing outside. He wants for me to carry him and I am just not strong enough. His 28 pounds feels like a ton to me. I gave him special treats that he doesn't get at home like Kool-Aid and bologna. His Mawmaw (his great grandmother) brought him home made cookies and apples.

 

Bentley wanted for me to go with him in the car and cried when I couldn't. It breaks my heart to see him leave.

 

I am having some well earned rest with my feet up. Casey text earlier to say Bentley was making salad dressing. That boy is a cook.

 



Outlander by Diana Gabaldon

This is book 6 of my 52 books in 52 weeks. I listened to this book from Audible. It was an excellent book - 5 star. The book is set in the Scottish Highlands and in England. There is a bit of time travel, but not enough sci-fi to turn me off. This book was almost 40 hours of audio, but you will want to listen every second you can. It was hard to turn it off when Scott wanted to talk. LOL

My next audio book will be The Kitchen House by Kathleen Grissom. Casey is going to read the print version. Mama listened to it and liked it, and a friend of Casey's gave her a copy. Join us and let us know what you think. Casey is at www.heelstohighchairs.com. I will also try to read a print book in between the audio books. There is something about actual reading that cannot be replaced.

Peggy Poe Stern has a new book out. It is available for Kindle now and in print next week. Her books are those that you just cannot put down. I have read everything she has published.

I have been working some on Bentley's scrapbook, knitting a sweater for myself out of my hand spun alpaca fleece, knitting a blanket for Kristen's baby, painting some huck towels for us, and reading/listening to books. The days are still very long here alone.

I have been feeling fairly well. I've been having a bit of trouble with my foot. but I have had issues off and on for years. If I stay fairly immobile I am feeling great. If I am pushing myself, I get chest pain and dizziness - nothing new. I am grateful for a little break in feeling like the Grim Reaper was waiting in the room.

We got a food processor with some of our tax refund. We have been having fun using it to slice, shred, mix, and knead. We have cut vegetables for soup. kneaded bread dough, shredded cheese, and chopped and mixed meatball ingredients. When I say we, it is mostly Scott. :)

I'm looking forward to Bentley staying with me while his mom is at the hairdresser this week. I am hoping for good weather so that he can play outside. He gets really excited when he sees the squirrels in the trees.

Officially...

I have sleep apnea like my Mama. Unfortunately they can't get me in to set up my machine for a month. I am hopeful that this will be the miracle that they say it will. It is supposed to make a dramatic difference in the way I feel.

I had an interesting early morning visitor. I got up around 4:30 and heard my bird feeder rattle. I looked out and thought a cat was trying to get into it. I pecked on the window and a raccoon was looking in at me. I took several pictures with my phone and it didn't scare it away. It must be really hungry. I wish Bentley had been here to see it.

Update

I had my CT scan on Tuesday. Since I haven't had a phone call, I imagine that there were no blood clots.

My sleep study was last night. I think they should schedule me for can't sleep studies. It was at least 2AM before I went to sleep. I can never sleep the first night in a new surrounding. The tech said my oxygen saturation started dropping at time to wake me so she let me sleep for a while longer so that she could be sure the doctor could see it. She said I would hear something by the end of next week.

Book 5 was Indecent Proposal. I know - trash again. We enjoyed the movie because it really caused us to think about what we would do for a million dollars. The movie was based on the book, but was different. I was fascinated that the husband was Israeli and the rich man was Arab in the book. I think the book was much better than the movie.

I am still listening to Outlander. Louann was right - I love it. She had been trying to get me to listen to it for years. I am not half way through and already looking forward to the next book.

For TV, we have been watching Sanford and Son. Last night I had cable at the sleep lab so I had a Food Network fix. I miss cable sometimes, but after a day or so watching I find there is "nothing on".

Book 4

I became fascinated with the Oregon Trail when Casey was young. We played the computer game, Oregon Trail. Oregon County was written by a person who did his thesis on the Oregon Trail.

I really enjoyed the book. There is a list of the actual settlers who made the first migration to Oregon. It was an educational and entertaining.

It was finally cold enough for Bentley to wear his snowman hat. I made it in 2010. He is such a cutie.

 

I have two tests coming up next week to search for a cause of my pulmonary hypertension. Hopefully they will find something they can treat. 





 

Pulmonary Hypertension

At the cardiologist's office today, I learned that I have mild pulmonary hypertension and right sided heart enlargement. The most common cause is sleep apnea. I was tested for it 2 years ago and the test was negative.

I am scheduled with a pulmonologist very soon. Hopefully my sleep study was wrong.

Use your search engine if you want to know more about pulmonary hypertension.

52 Books in 52 Weeks

Casey and I are doing the 52 books in 52 weeks challenge. We are to read 52 books this year. I imagine we will surpass this goal.

I read Josiah for President as my first book of the year. I found it very entertaining and had some very valid political points. The Amish do not hold public office, but I do agree if we could go back to simpler times we would all benefit from it.


My second book was a piece of filth called Big Girls Do It Better. I'm not sure what I thought this book would be about, but I got quite the surprise.

I have been watching Upstairs, Downstairs from BBC filmed in the early 1970s. I am enjoying this series and it has aroused my interest in World War I.

Scott and I have been watching Deadly Women in the evenings. It is hard to believe such evil can exist in our world. This is not a series for those who cannot stand to think about the wrongful deaths of innocent children.

I am knitting a sweater from some alpaca fiber that took me over a year to spin. I used my electric spinner for it since even treadling my wheel can cause my heart to race. I am spinning a bit of Blue Face Leicester that my friend Louann dyed and gave to me. It is beautiful pinks and purples. I have been spinning it for several months, just a few minutes here and there.

Nothing changes much with my illness other than I get sick from viruses much easier than I ever did before. A trip out leaves me with symptoms for several days. I still go into anaphylaxis quite frequently.

The hardest thing for me continues to be accepting that I can no longer go to work. I miss it very much. I also miss driving, and being able to go where ever I want, when ever I want, and being able to do anything I want. Sick days leave me physically and emotionally drained. On days that I feel a bit better I tend to overdo, which leads to my being down for several days. I am so much better than a year ago, but still so very sick.