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.


Evelyn Chua said...

We are praying for you!

Karen Crozier said...

We are praying for you!

Nana Pam said...

Cindy, I think about you constantly. Therefore, I'm praying for you,Scott and all of your family. I love you girl!!z