Should Have Seen It...

Down to 20mg-12.5mg-12.5mg and it still sucks. Nausea is my friend, but I can still eat and drink. Mostly going on at night time. Sleeping well, but thinking is still a big problem. The fog has not lifted. Lots of pain still. I would take this over any day with Cushing's. I can control most of this...and someday it will all be better. Read more!

Cutting the steroids still. I am down to 25-15-15mg. I am taking them 7-8am, 1-2pm, and 5-7pm. I am sore and sucking on some pain meds. I have some nausea with it as well. I am still sleeping pretty well. I cooked dinner tonight and you would have thought I ran 5 miles. It wore me out.

Kind of thought I would be feeling worse than I am. I mean, I feel bad. It just isn't as bad as I felt prior to surgery. I am surprised. I am glad and I am hopeful. Things sure feel different these days. My sodium, electrolytes and potassium are all at good levels. The medicine to control it is working.

The brain fog is still rampant. I can manage to think through it though. I could before, but it might be a bit better. It is a very hard thing to do. Complex thought processes are my bread and butter in the job I worked at. They are holding my job for me, but I am not sure I will be 100% when I do go back. The doctors told us months ago they thought there were some permanent damage in the thinking process. I guess time will tell.

I can still write so I have hope I will be back into work. If I have to I will learn to adapt in my thought processes and how I do my job. Life is about change. I was sick for many years. Surely some things will never be the same. It doesn't mean I won't figure out a way around them though. I have hope.

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Love is always bestowed as a gift...
freely, willingly, and without expectation...
We don't love to be loved; we love to love.

That about says it all about my wife. She stuck with me. Loved me through the rage, the not working, and the times I couldn't love myself let alone anyone else. I have learned more from her example of love at its purest than she will ever know. Read more!

I am now down to 30mg 20mg and 15mg cortef. Cortef is what I use to replace the hormones my now missing adrenal glands used to produce to much of. The normal dose varies for each person, but I need to get down to around 25-35mg a day total. Maybe a bit more or a bit less. We won't know till I get down to that level. My body will let me know the dose it needs.

We went to see the endo to get our lesson and manual on Adrenal Insufficiency Thursday. Learned why eating high potassium diet was bad and stuff like that. The doctor took an hour to explain how all the medicine worked in the body. We had read we needed to eat high potassium and probably take salt pills/eat lots of salt. It was not the smartest advice we had read. The doctor said eat a normal diet with maybe a bit more salt. Adding salt in warmer weather is needed, but we arent exactly having a heat wave around these parts yet. Still winter here.

We were worried about electrolytes but not so much after our training with her. She told us the warning signs to look out for and when we should call her. I have a standing order for blood tests for everything, but they won't be needed for the most part. Reading some support message boards you think all that stuff is going to be bad, but it really isn't the case. Seems like most people do fine with it. You really have to be careful with taking advice on support sites at times. It really helps to work with your doctors. I think it is wonderful to be knowledgable, but I think you can get astray from facts sometimes. Like the doctor told us, most people who are doing well after a bla or with Addison's aren't writing on message boards or blogs. They are out living. I plan to be out with them, and write about the experience. Maybe it will help someone else.

It was the first time we have sat down with a doctor to really get to learn how everything is working/going to work. You really get stuck in crisis mode at some point with Cushing's when it goes on so long or gets to a certain point. You start living that way with everything it seems. We kind of just expected to be in crisis mode after the BLA. It isn't working out that way.

Thursday was probably the first day in years that I really felt like there is life after Cushing's. I am able to get out and mingle with people I haven't seen in years at church. Being among people is doing wonders for me. I hid so long because of the Cushing's. It was one of the first things I noticed after surgery. I didn't care anymore, groups of people didn't bother me.

I still have a long road to haul, but it is getting better. I feel like crap, but it is very much different than before the BLA. It is more manageable. I can l do things to make it better. With the Cushing's there were times nothing helped. I had gotten so much worse from November 2008. I have little doubts that the BLA happened in time to prevent some more series bodily damage or worse.

So now, it's just weaning and fighting the pain and such. I am still on a pretty high dose so the fun times are still to come. I think we have the right doctors in place. We are aware of what emergencies might happen. More importantly, we are aware on how to head them off, and if needed, how to treat them to make sure we can buy time till I get to a hospital. That may not ever happen in my lifetime, chances are good it won't if we stay ahead on the medicine. We are ready if it does.
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I never really ever thought I would get sick like I was. It is hard to explain how you feel when you are sick all the time. One thing I can say, the pain and roughness becomes normal. You get used to all but the worse parts. It becomes just part of the day. Just something to get through till you feel better. Something for a pill to fix, if it can.

Oh, I always wondered what it would be like when I was healthy. What would cancer be like? Does it hurt? Would I have the strength to fight it off and win? Would I have strength if it looked like I was going to lose? I am sure most people entertain those thoughts, especially if and when they have family members fighting these types of diseases.

I never thought I would actually get something like this, let alone a rare disease like Cushing's Disease. It is like nothing I ever imagined. You think, that if you get sick, you go to the doctor, they diagnose you and you get better, or at least get treatment and eventually get better. Not so with Cushing's and I imagine not so with a lot of rare diseases.

It would take years to diagnose and I would lose a lot of who I was. I would face the loss of my ability to be mobile, my ability to think, to make love to my wife, my military career, and I would end up lost in my own mind. Cushing's causes high cortisol and it plays hell on the body and mind. It would end up destroying my bones, my teeth, my muscles and cause mental illness like symptoms. I have a hard time talking about that. I will save it for another day. The rawness of it still burns.

Once I had the diagnosis of Cushing's Disease (2006), it would take almost 18 months to get to the first surgery. Having a diagnosis really meant they just "thought" it was Cushing's, it would take literally dozens of more tests to "confirm" it in their minds. By October, 2007 I was fully diagnosed and had the first surgery to attempt a cure. The doctors at MD Anderson performed brain surgery to remove a pituitary tumor, the cause of my Cushing's Disease. It failed. I had a brief remission but it came back.

By June, 2008 I was on ketoconazole. Ketoconazole is used for the treatment of fungal infections. In larger doses, it is a chemo drug used to treat cancer and Cushing's. I used this until December 2008 in the hopes the body would mend some before the next surgery. It was not without its own problems, but I have to admit it did work to a degree.

On January 30th, 2009 I had a Bilateral Adrenalectomy or BLA. This is the removal of both adrenal glands. It stops the brain tumor from being able to send signals to the adrenal to overproduce cortisol. Cortisol is a natural steroid produced by the adrenal glands. Cushing's is the overproduction of Cortisol. I will take pills to replace what my body no longer can produce. Without the pills, the body would go into shock and quite quickly you would have a fatal response because of the adrenal insufficiency event. Not to fear, I have plenty of pills!

So I have come full circle. I have been tested, diagnosed, treated and cured of Cushing's Disease. Addison's Disease now replaces the old because of the BLA. While I have come full circle, we know that Cushing's Disease took years to damage body and mind. It will take many months to several years to undo what was damaged. Somethings will not go back to normal. No one can say what that is. Every patient is different.

I don't wonder what it would be like to have something like cancer anymore. One disease was enough. It is a disease like no other. One where you have to fight the doctors to get a diagnosis. One you have to fight the disease not to give up and let it win. One where the chance of a surgical cure is low unless they remove your adrenal glands. One where you are likely to trade one disease for another to get a cure. It is like no other alright. I fought Cushing's Disease for over 7 years. On January 30th, my family won the war. We have finally beat Cushing's. Now to heal body and mind...
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Soon, I would start to wake up more and I would begin focusing on my first goal, getting out of the hospital. To do that, I knew they would subject me to tortures I didn't want to do...like eating

I'm not really sure why they want you to eat solid food before you can go home. I'm sure they have their reasons and I ate a bit of what they gave me. The sore throat from surgery made it hard to swallow.

Soon, they were happy. I was up and walking. The pain was generally under control. I couldn't walk more than a few feet without going out of breath, but that just seemed to be a function of hacking into my belly than anything else. The torturers that were the nurses and doctors were happy now. I could go home.

I was happy to be out, till I learned one thing. Hotel room beds may be comfortable to most people, but they don't have rails and they sit to dam low. The pain that was so absent in the hospital was a product of a personal pain pump and a bed with rails that raised and lowered.

It would take two days and two very sleepless nights to start getting more comfortable. I just kept walking and sleeping when I could. Soon, the couple steps got longer before I was winded. I could walk further and bend a little more. The days dragged on.

We went to see the surgeon for follow up 5 days after surgery. He seemed surprised I was getting along so well. I guess I was surprised too. I had holes all over my sides and back, 11 to be exact. Some small and one very large one. They were all sore to some extent.

The surgeon gave us the go ahead to go home that Friday. We jumped on it. I went back to the place we were staying, Kathy's House. I ended up resting as much as I could. I knew I needed it and the trip home was going to be rough. Six and a half hours doesn't seem like much, but it is when it hurts. The good thing is, I ended up sleeping most of the way home and we made it without incident. It felt good to be home. I wasn't sure how the bed was going to be...
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A quick shot of goofey juice, a kiss for my lovely wife and it was lights out. All I remember is starting that last prayer...now I lay me down to sleep. Then, nothing...

I don't really remember waking up, at least not in the sense that I remember once defining point of "being awake" from the surgery. Most of the time when I have surgery, I remember. Be it pain, someone telling me to breathe deep, etc. This time, I stayed foggy for a long time. There were no sharp moments of terrible pain. There were no nurses yelling for me to breath. It was quite peaceful, the bits I remember. It was quite frankly, not a lot of pain for the surgery it was.

I am sure the staff moved with the same grace they had shown in pre-op. I will never fully remember them. I will always be thankful. I just won't remember who to be thankful for.

It strikes me as odd that every surgery and it's "In and Out" period of coming back to consciousness seems different. I know, I pay attention to waking up. I have this irrational fear of being put to sleep for surgery. I don't like surgery, I don't like anything about it. This one was different. It wasn't elective. It wasn't for something minor. This was for everything. This surgery is my only real shot at a cure. If it fails, I stand an almost impossible chance of winning the battle with Cushing's. This one was for all the money.

I have a lot of bits and pieces for memory that first evening after I woke up. It is mixed with shadows. I knew I had made it through surgery and that was enough. Soon, I would start to wake up more and I would begin focusing on my first goal, getting out of the hospital. To do that, I knew they would subject me to tortures I didn't want to do...like eating.

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It was a nice hospital, as far as hospitals go. Elmbrook Memorial is a small Catholic hospital in Brookfield, Wisconsin. The one common theme is everyone is nice. Everyone seems to care and no one is afraid to take your hand and hold it if they think you need it. Being the chicken I am about having surgery, I must have needed it a lot.

There was a lot of privacy to each step in the pre surgery move through the system here. Private rooms with real doors were top on the list. A good place to hide your face when you start those pre surgery prayer marathons. They all seem to end with "Lord, just see me safe through to the other side." I think in all my prayers, I forgot to ask for a cure. I covered the basics. Like "let me wake up" and "no complications" but I forgot to ask for that cure! Real smart move.

Soon the doctor's were filing in and out. The one common thing is they grabbed my hand and told me how they were going to keep me safe for my kids. I guess my prayers were being answered pretty fast that day. No real talk of cures, guess we will just expect that those are a given. A quick shot of goofey juice, a kiss for my lovely wife and it was lights out. All I remember is starting that last prayer...now I lay me down to sleep. Then, nothing...
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