Tuesday, July 30, 2013

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.

Friday, July 26, 2013

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.

Wednesday, July 24, 2013


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.