Saturday, August 27, 2011

More of the Same!! :)

The only thing coming to my mind right now are the words: More of the same.
That basically sums up what is going on with me.
I had my latest round of doctor’s appointments at John’s Hopkins this past week. They did repeat tests on my pancreas.
The doctor called me yesterday and said, “Well, I have good news and bad news.”
The good news is that my tumor on my pancreas is NOT growing substantially right now and it’s NOT cancerous.
The bad news is that I have severe and worsening Chronic Pancreatitis that will not go away. He thinks that eventually I will have to have a total pancreatectomy which is a removal of my pancreas. They are going to retest me in December and see where things stand.
For the past month, I had been doing a little better and eating a little. I mean, I was severely nauseous and very sick all of the time with anything I ate, but I was able to tolerate a little. But the doctors now have told me in all seriousness and candor that in order to get better and prepare in case I need to have my pancreas out that I can no longer eat ANYTHING at all. His exact words were, “These are the cards you’ve been dealt, and you have to deal with them, Ami.”
That is hard to hear.
Having a chronic illness is so hard because as he said, there is not any easy fix. They can’t just go in and fix me right now. They don’t want to do a surgery right now because I am on steroid medication, and my healing process would be compromised because of that. I need to be off of the steroids, I need to lose some weight and I need to be off all food except for tube feedings. Then they would consider the surgery. It is a MAJOR, life altering surgery. Living without a pancreas is rare and complicated. It’s not something I want to have done if I can avoid it. But the pancreatitis is worsening in severity, and unless the Lord performs a miracle, It’s something that eventually will have to happen.
The doctor said it’s really going to depend on how tolerable the pain and stuff is for me. It is quite painful.
I hate not eating. It’s hard. It’s miserable. But it’s what has to be done.
Please pray for me. I know that God is in all of this. I know that He is there and is going to bring me through all of it. I just know it. I know that He is my strength and I’m going to make it through!!! We don’t know what we are going to do about the pain pump. It’s something that I’ll face with Kevin eventually. We just need prayers.
In a nutshell, I just wanted to quick update everyone. I will write longer later. I just wanted you to know that, thankfully I don’t have pancreatic cancer. It’s all benign, but the pancreatitis is really bad and getting worse, and eventually I’m going to have to have my pancreas removed. They are going to test me around Christmas time and see where things stand. It’s up to the Lord to heal me and get me better. And I know He will!! I have to believe!!

Monday, August 1, 2011

Update: Pain Pump Pulled

Well, I wanted to write an update because some people might not know what is going on with me.
Right now I am laying on a mattress in my living room here in Texas. It's so hot. I am in the living room on a mattress because I have to lay flat for 72 hours due to a spinal fluid leak and severe spinal headache.
I had the trial pain pump put in. It was placed in my spine, and things seemed to be fine. That was Wednesday. On Friday, I saw the doctors and they adjusted my medication, and I was really excited because for the first time in years, I really felt like I had minimal pain. It was exciting because I was getting relief. They wanted me to keep the trial pump in for a few more days.
Well, I woke up on Saturday morning, and I had the worst headache of my life. I had tingling down my right side, and I was miserable. Something having to do with the catheter in my back where the medication was being delivered got messed up and was hitting a nerve, and the doctor said that I had a spinal fluid leak which is causing my headache. This happened even though they did a procedure to prevent this. It still happened, but I will be okay.
So thankfully, my father in law took me this morning to Dallas and they pulled out the pain pump trial. The doctor told me I need to lay flat for 72 hours. If my headache doesn't get better, then I have to go back to get another blood patch, which will hopefully stop any spinal fluid leak. I'm hoping that I DON'T have to do that!
So I am fine, just laying flat. I can check my computer for a few minutes at a time. Please pray that I don't have to have another procedure done to fix this and that it will go away on its own.
Thanks everyone. I will update you all on how I'm doing. If I don't respond to your posts right now, it's just cause I can't get comfortable and I can't spend too much time on the computer at once. I am still positive that the pain pump is going to work because I did get relief. This will not happen with the real pump because it will be a permanent device implanted in me. I am doing fine, thanks to God and a great family.
Trust in the Lord with ALL thy heart and lean not unto thine own understanding. In ALL thy Ways ACKNOWLEDGE HIM and HE will DIRECT thy paths!!!!! Prov.3:5-6