5 Weeks Post Op

Well, it's 5 weeks after surgery. I got a call from my doc on Friday when I sent them an email about my last ween. The last ween I did, the morning after I was not functional at all. Mrs. Zebra and her father nearly dragged me to the living room to take my meds and eat. I honestly woke up an hour later, not knowing how I got there, in a great deal of pain. I sent my nurse practitioner an email about it.

My doc called and I explained it wasn't getting any better over the weens and that the NP kept pushing me. He told me I messed up a ween (not bad, just mis read it) and to go back one week. So I ended up actually going back 2 because I messed up on one. But Friday, I'm scheduled to ween again. Almost the same one: no evening dose. 

I think I still might have a small CSF leak, but it comes and goes. It didn't help either that I was battling an upper respratory infection. This whole this is still a huge struggle. I know almost for certain my pit is not awake yet. No libido at all, and I think my Growth Hormone is low. I won't get that checked until September. I just hope AFLAC pays soon so we can get plane tickets.

My taste isn't 100% back, but much better. Smell too, sometimes I wish my smell was still gone! My lengthy visits to the rest room are not fun at all! Try being so constipated that you have to push hard CAREFULLY, then right after the plug is loosed, having the runs so bad, a Bantha would run from the smell. Sorry. Just a fact of life for me now. And so weak still. And people stil want me to do this and that. And in 110° heat! No way! I can't wait to explore life after cushing's. 
Mrs. Zebra is scared though. Mostly, because she is afraid we won't be able to have kids now. I just tell her that we will cross that bridge when it come and if worst comes to worst, there are so many kids out there that need moms and dads. God may have some picked out for us. It's hard dealing with my own hormonal and emotional issues, but to have to deal with both of ours is harder. Then again, she has had to do the same. Neither one of us stands straght up, we lean on each other. And it if it were not for her, and all of you readers, I could not have made it this far. Now, its nap time!

The Weary Zebra

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3 weeks post op

Im sorry I have not posted in a while. I have been so tired and sick lately I just have not had the energy. 

Mrs. Zebra and Dad-in-Law really pushed me the first few weeks to get out and do more and well intended as they were, I think I way over did it. I ended up in the hospital last week for a CSF (Cerebrospinal Fluid ) leak. I started dripping in a restaurant and that evening I was being transported from UT Southwestern ER to their Neuro ICU. Thats where I met the real reason I went to Swedish and Dr Ludlum/Mayberg instead of here. Once they found out I traveled to Seattle for my surgery, the docs became hostile and wanted to change up all my meds, and got really mad when I asked them to talk to the doctors whom care for me currently! I couldn't get the drip to reproduce but my drainage got worse. All the while, I am weening off my hydrocortisone which is the only thing standing between me and another trip to the ER. In fact, every morning between 2am and my 8am dose, I get to experience Adrenal Insufficiency. They dont worry because Im sleeping and its for a short time. And using this, its supposed to jump start my pituitary and so far it hasn't worked. 

So, friends, family, etc. I really cant go anywhere anymore. I had brain surgery. I look fine, but in the past week, I had a CSF leak and started bleeding internally again. I did way too much. Im sorry. I dont mean to disappoint you guys but my daily workout has been going to the bathroom in time to make it. If I have to, Ill start wearing bandages around my head. But feel free to come over and visit. Lord knows Im up for that! The apt is clean and you can move around it! And we do need some help with stuff. And just to come over and hang would be cool. But Mrs. Zebra canceled her old plans for my birthday this week and so far the plan is just for you guys to come over and hang out. She will have more details tonight. Thanks for understanding. If it helps, pretend I have cancer! 

I ween again tomorrow. The last one was scary, this one is even scarier. Keep me in your thoughts. For now, Im off for a nap. Doc appointment wore me out. Thanks Mike! You really came through!

The (very) Weary Zebra

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Post Op Day 9

The last nine days have been like nothing I have ever been through in my life.

I must first apologize for being so late on my update. I have been relying on Mrs. Zebra to update friends and family but she has been exhausted the last few days as have I. Spending more than 20 minutes looking at a computer monitor makes me physically ill. This is problematic since my only link to the outside world is social networks like Facebook, Twitter, and the Cushing's Support site.

On Tuesday, July 13th, 2010 my life changed forever. At least I believe that it did. I had 70% of my pituitary gland taken out to ensure the remaining 30% was tumor free. The surgeon, Dr. Marc Mayberg, believes beyond a shadow of a doubt, that he took all of the tumor out. The part that worries me, and to a smaller extent the doctors, is that my cortisol numbers DID drop below 2.0, but did not stay there. I have not had my levels checked since I was discharged that Friday, but it feels like I did crash and stay low since then. Let me tell you, the surgery is touted to be a simple one from a neurosurgeon's standpoint but is nothing short of hell. I woke up to crushing pain from my head, and the Diabetes Insipidus was already flushing my body of liquids. Every part of my body was heavy and ached. Every sound was like an ice pick into my skull as was every beam of light. Blood freely flowed from my nose as did Cerebrospinal Fluid. Thankfully the two CSF leaks I had quickly healed themselves. Then came more blood. During surgery, blood drained into my stomach. It came back up. Mrs. Zebra said walking into my room was like walking into a horror film. I was screaming for help because I had to use the restroom and I was bleed everywhere. All of this masked the pain from my abdomen for days, where they took fat to plug my pitutary cavity. This surgery is something that, unless completely necessary, I do not ever want to go through again. It was as if all the years of suffering were boiled down and injected into my head at once.

This is but about 1/3 of what came up. They dumped the other two before Mrs. Zebra took this.

The light and sound sensitivity were present right up through my discharge, but one other side effect that was not explained to me still lingers. I can not smell or taste anything but sweet and sour. Spice is an acid so its effects are felt, as well as the effects of salt, but nothing else. This makes every meal very depressing. 

Each and every morning is hard to get up, worse than my "crashes" before and now that I have started steeping down on my medicine I shiver under my covers from being cold. For the first time in my life, the air conditioning at night is too cold for me. I am not complaining, mind you, just amazed. Between my lows in the morning, my aches and pains all day, and my cold at night, at least for the moment I think my Cushing's is finally behind me. 

I take steroids to help me function through the day. Dr. Ludlum gives high doses of Cortef to start, 30mg three times a day. Enough to give me back my Cushing's if stayed on too long. So he instructs to ween by 10mg every 4 to 7 days. I started my first ween Tuesday, day 7 after surgery and 4 days after I started surgery, so I did. I felt it for sure that night. I slept much better than I ever have. Last night, the only thing that woke me up was the nausea that ripped through my body. Not enough to make me throw up, but close. Each day I am vigilant in looking for signs if Adrenal Insufficiency. What worries me is that I truly dont know what A.I. is like because I dont know if I truly every felt it. What is A.I. and what is nausea from drainage from the never ending head cold I have now?

Besides the drainage, and the nausea, the fatigue is more than I could have anticipated. Even on the high doses of steroids, just getting up to use the restroom that is 25ft MAX away from my spot on the couch is enough to make me feel weak and tired. Milk jugs, water pitchers, even my Macbook Pro are way to heavy to carry further than a few feet. This makes dealing with every day events hard. Especially the fact that my Diabetes Insipidus is just barely under control. 

My days since arriving back home have consisted of resting and letting Mrs. Zebra's Father help with cooking, cleaning, and the like. He has been a huge help and when he leaves he will be missed more than he realizes. He is giving both myself and Mrs. Zebra a much needed break. For now, I focus on healing and fixing the vast sums of medical bills that come in. $100K just for testing is a bit much, but it is getting take care of. Mrs. Zebra is next. Hopefully she can either get on the new state insurance plan paid for by the new federal law or we will have to do something drastic. She is showing more and more symptoms of this dreaded disease every day. It is a horrible disease, and an almost as equally horrible ordeal for remission. I wish this only on those who refute it's existence or refuse to understand what living this way is like. It is nothing to wish for. My net time is about up for now. Time for a nap.

The Weary Zebra

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D-Day, Zero Hour

Well, the day is finally here. The day I will start my new life. I do not know a life without Cushing's so its a bit intimidating. But I know it is for the best. Im so hungry, and I have sinus drainage so my stomach is not good this morning. I didn't sleep well, tossing and turning, but I did sleep. I woke up sore, but to a smiling round face wishing me a good morning! Im excited and very positive, even with the good/bad news from yesterday. 

I got to see my MRI yesterday and it looks like it is larger than the scan original said. It is 3.5mm thick. But it looks like 6-7mm long, nearly half of my 13.5mm Pituitary. And it is close to my artery. Its GOOD that he can see it, but that large and that close to the artery, well he has his work cut out for him. I dont know when my next blog will be, so keep up with the Caring Bride site for Mrs. Zebra's updates. I love you all. Time to shower and get ready...

"And I think it’s gonna be a long long time

Till touch down brings me round again to find
I’m not the man they think I am at home
Oh no no no I’m a rocket man
Rocket man burning out his fuse up here alone"

The Weary Zebra

See and download the full gallery on posterous

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Testing and Loneliness

Well, yesterday I completed the first part of my tests while here. It I had what is called an Octreoscan. On Monday, I started laxatives and Tuesday I was injected with radioactive isotopes. Then Tuesday I had a full body scan. But my abdomen wasn't coming out good, so I was told to drink an entire bottle of Magnesium citrate. I usually have daily diarrhea because of the cortisol, or rather the lack there of, but when I come here it stops. SOOOO I went to down town and looks at kilts and over did it and that night I tried to down the entire 10 oz bottle. Last time I had to take this, I was trying to get into the Navy. I had to do it twice. I literally spent the night both times on the toilet. I couldn't get the entire bottle down this time, but the half I did get down did the job and then some. I couldn't eat meat still, and the ramen was not sitting well on the laxative all day. On top of that, I has crashed so EVERYTHING hurt. All my family was busy I guess, even Mr. Zebra didn't want to talk to me yesterday. For two days in fact. So I was felling very alone. Then during my 2nd scan, I had to hold my hands above my head for almost 2 hours. It was not a good day. I felt like I could sleep all day.
Today, was much better. A cushie from Ireland Skyped me and helped cheer me up early this morning while I was still up (2am local time). Had a cushie friend in the area come down and hang out with me. She was great (very high, like I was) and her daughter was a riot! Mrs. Zebra talked to her on the phone and wants to clone her! I took bunches of pictures and we both had a blast on the ferry! Thank you so much!
4 days left before surgery, and tomorrow Mrs. Zebra comes up from Texas! I miss her so much!

Oh, and the photo? Thats me. Im glowing. All the white specks are radioactive particles! Im super geek now! I can... well.. glow. Thats about it. And whine.

The Weary Zebra

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Fireworks

For the first time in my life, I had the opportunity to sit outside and watch the firework on Independence Day WITHOUT SWEATING!. Unfortunately, I was too pooped to make it down to the park. And it was raining off and on. So this is as close as I got. And I misjudged the distance of the fireworks when I snapped this picture because I thought this was a big as they were going to get. NOPE! But it was bitter sweet.
I got in to Seattle about 7:30 pm and missed the cafeteria here being open. So I had to either eat ramen or order out.

I ordered out. But NOTHING is open on the 4th around here except Pizza Hut. Oh well. So I ordered and decided, since it be about 2 hrs (yea, THAT busy) I would go try to find the fireworks. A nurse was opening up the 6th floor facing that way and we had about 3 couples join us. It was cool, all the sickos huddled around the window watching fireworks. The pasta got here early so I had to bolt, but it was still neat. I just really missed Mrs. Zebra. She is still in Texas, worried sick about me. I wish I could have shared it with her. It may be something we will do next year.

I couldn't sleep. Both lonely, and hot, It was hard to sleep. And teh battle between jet lag and cortisol was waged, and this time cortisol won. I didn't sleep until 2am local time (4am central) and I was up at 6:20am local time. But its nice outside. About 54°, and they are already warning of the heat wave this weekend: 84°! HA! Home away from home!

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Set In Stone

Yes, steal is a mineral and minerals are considered stones. My blog, I win.
I got the tag for my bracelet in about two weeks ago, but the bracelet I had wouldn't work so I had to order a new one. It came in yesterday. So I re-sized it (thanks Mom!) and put it together. I decided to start wearing it just to get used to it. I didn't want it bugging me while weaning. But as I put it together, the road ahead seems more solidified. It also seems long and arduous, but at least it is more clear than it was before. I have much more to go, but the crest looks to be neigh. IN 13 days, I will have my pituitary gland sliced, minced, prodded, poked at, sucked and snipped. I am ready. Lets DO EHT!

I just hope while up there, my marbles don't come out. I need those.

And Yes, my name is on my tag. Photoshop took care of that.

The Weary Zebra

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