Wednesday, January 21, 2009

MRI report is back!

This is going to sound weird to people who just don't understand all about this disease. I got the radiologist's report back on my latest MRI. In short, they don't see any tumor. That doesn't mean I don't have Cushing's, it means they don't see any more tumor THERE to be taken out.

The nature of the beast is like this. You can have different types of tumors. There are ones they call ooey gooey tumors, that are similar to snot, and just kind of run everywhere. There are well formed tumors (mine was) but they are not always easy to get either. If one cell gets left behind, it begins to grow again. Some of these tumors have tentacles on them. They are very tiny, and not easily seen. My surgeon took extra tissue around the tumor, and thought he got all of it, but they can't see those tentacles, or how far they might go within the gland.

I was hoping they would not see any tumor regrowth. That would have meant that my endocrinologist would have wanted me to go back for another pituitary surgery. If they didn't get it all the first time, who's to say they will get it the second time? The second time around you have more chance for what is called a CSF leak. It's cerebral spinal fluid. No thanks! Since they are going in and just hacking away at the pituitary, hoping to get any tentacles they missed, you end up with hormone losses. That's a mess in my opinion. At this point, most of my hormones are fine, and I want to keep it that way. I don't want to balance every one of my hormones for the rest of my life!

So, since they don't see anything to go after, this means I can have a bilateral adrenalectomy, also called a BLA for short. With the BLA, they take out both of your adrenals. That cuts the feedback loop and stops the excess cortisol that is causing Cushing's. There are "complications" associated with this surgery as well, but they are more favorable to me. If you still have tumor on/in the pituitary, and you have a BLA, there is a chance that the tumor can start growing rapidly. If it does, then you have to either have another pituitary surgery to debulk the tumor, or have something like the gamma knife radiation. You can also develope Nelson's Syndrome. With that, your skin gets dark when your ACTH levels go high. Sometimes you just look tan. Other times, you look dirty and splotchy. Personally, I feel so bad, I don't care if I look like a spotted leopard! I just want to feel good again. Everyone has different feelings about our options and what is best for us. We are all different. This is what I think is best for me.

Once you have a BLA, that means without adrenals, you have NO
cortisol. Everyone has to have cortisol to live. It's not an option to not take it. If you don't take it, you WILL die! You can't take it whenever you feel like it, you can't run out of it and pick it up when you get around to it. That means, you are one pill away from death at all times. That is drastic, but it still sounds better to me than to go through another pituitary surgery, end up with a CSF leak, lose a lot or all of my hormone function, and still not be cured (this happens a LOT)! So, I'd rather just skip to the BLA. I've lost too much of my life to this already. I don't want to spend more years of failed surgery, testing again, another surgery, etc. I just want to be done with it, and this is the best way to do that.

So, where does that leave me right now, at this moment? Well, I am testing again, and when I get some good highs, I can move on. My doctor made it sound like I won't have to do a lot of testing. He really wanted to get the MRI report. He would like to see some more highs (I think), but the ones I already had were high enough that he agreed that I still have Cushing's. I hope I don't have to test and test forever to get super high highs again. I've already went downhill so fast, it's not funny! I was feeling decent at the beginning of Dec. By the end, I was starting to feel pretty bad. When the new year hit, I hit rock bottom again! I feel like I'm back at square one. Everything that I'd seen progress on, is back to the same ole, same ole! Not good!

Thursday, January 15, 2009

I rode a scooter!

I haven't updated my blog for a while, because there really isn't anything new going on. The most recent development is that I've given in and rode one of the scooters at Wal-Mart. I've looked at them many times. I'd stand there and eyeball them, wondering when I'd have to ride one. I'd feel like I had enough energy to make it through the store, only to find myself in an aisle, wanting to cry and lay on the floor, from pure exhaustion and weakness.

Last night, I went to the grocery store. We have had some major snow here. We didn't have church because of the weather, and I REALLY needed groceries, so I went out to get some. I got the Kroger sale items, and headed to Wal-Mart. Once inside the store, and not far from the front, I knew I was going down fast. I didn't know how I was going to make it, as I was needing to go through the whole grocery section. I told Ciera that I wished I had a cart to ride. She suggested I get a scooter. I didn't want to do it. I said, "No, I don't know if they even have any up there." Well duh! It's late at night, there's a major snow storm going on, and there were MAYBE 10 people in the whole store shopping. She said she would go get one for me and bring it back. I didn't want her to do that, so I walked up there, and asked the man how to use it. That was embarassing! I felt awful. I know people look at me and don't think I'm sick, because I don't LOOK like I'm sick. What I feel inside is something totally different than what people see on the outside. I felt like collapsing, so I broke down, swallowed my pride, and rode a scooter.

I'd put off riding the scooter for a long time. Actually, I was about to ride them, and then I got my GH replacement, and that helped me tremendously. But, when the cortisol goes high, or other things are out of balance, it doesn't feel like I have any GH in me. I am very weak! After surgery, I was doing so good, and didn't need it. I didn't even consider it, except maybe the first time or two out at the store, right after surgery. But, even then, I made it ok just walking.

It feels like defeat to give in and ride a scooter. I feel like I'm always trying to stay a step ahead of this disease. I don't want to let it win. Riding the scooters made me feel like the disease won. I know it hasn't, but I'd hoped I'd never be this bad again before getting back to surgery. Once I started going downhill, it went fast! Everyone tells me that your highs are higher, and your lows are lower. I think it's true. Once the New Year hit, I went into a low! At first, I didn't know what was happening, because I never felt that bad in a low before. I'd felt like I had high sypmtoms during our winter Campmeeting. I couldn't test because we were gone. Once I got home, I tested, but I'd missed the high. I was going lower on the tests. Then, it hit my bones and muscles. I can't even describe that kind of pain. Just imagine having a very bad flu, and that's about what I felt like. I didn't feel sick to my stomach, but I had joint and muscle pain.

Now, I am starting to feel better, pain wise, and I feel like I'm coming up out of that low cycle. I'm waiting for the next high to hit, and hoping I will get some really high numbers so I can get back on a surgery table somewhere. It's pretty bad when you WANT to have surgery. I just want to feel better! I felt sooo good after surgery. It just didn't last long enough. I'd hoped I wouldn't get this bad before being rediagnosed, and getting another surgery. Wishful thinking, I guess.

Thursday, January 1, 2009

It's 2009!

I sure am glad 2008 is over! I'm hoping 2009 will be a better year! I had another MRI on Wed. morning, the 31st. It was my last big bang on that good ole ins. card for 2008! Now we get to start all over for 2009. Yay! Not!

So, I am going to try to get a copy of the radiologists report, tomorrow. I hope they don't see any tumor regrowth. I'd rather move on to a BLA. I also need to get results to a lot of tests that I've done. If I can catch some really good highs soon, it will help move me on faster. I just want to be done with this, and feel better. I think someone gave me a free lifetime membership though.