Humpty Dumpty and the Great Train Wreck

How am I going to do this? How am I going to go back to work and school? I wonder how I'm going to drive, for heaven's sake. I get so tired - really it's like to most fatigue I've ever felt at one time. My arms and legs feel like lead weight, but rubbery. I sometimes feel like it's just getting worse, rather than better. I wonder when I'll start seeing evidence of change - when I'll start really feeling better, instead of worse.

If I am going to start school and return to work in a few weeks, something has to change. I have to start feeling better somehow. I can't possibly be productive in my current state! I'm like a train wreck with all of my pieces scattered all over the track. The whole purpose of a train is to move on the track, transporting things from place to place. If it's broken, it can't be productive - like me. I feel like I couldn't fulfill my purpose right now because I'm broken. I'm scattered all over my own track.

I need to be put back together again. So far, not even the king's horses or men have been able to do this. I hope modern medicine has a chance.

Reading Up

I have tried to learn as much as possible about my illnesses, all of the tests and procedures, and surgeries. I have a great desire to understand what is happening to me, what to expect, and what the possibilities are. My motto "Be Your Own Super Hero - Out To Save Your Own Life" means that we should all seek to understand and be in charge of what happens to us. No. We may not be able to control our ailments themselves, but we can control how we address and respond to them. Choosing health facilities and physicians has a great deal to do with experience, knowledge, ability, and availability.

More than anything, knowing and understanding what to expect can help us prepare for what is coming. That can be comforting in a way, even if it's scary at the same time.

I decided to look up some information on the side effects of steroid therapy for post-surgery induced Cushing's Syndrome. There are 36 side effects I can look forward to - although I know I may not get them all. But when you look at the many symptoms of Cushing's Syndrome and think there is no way one person can get all of them - make way for me, I tend to break most of the rules and expectations. Better be prepared just in case I guess.

I'm not going to lie - this is like some kind of hell.

My doctor didn't lie when he explained what it will be feeling like as I taper off the steroids. He said I would feel crappy. I won't lie to you - he was right.

If I hadn't known how I was supposed to feel during this time, I might had requested to be taken to the doctor. It's like going downhill or backwards in recovery. Every joint hurts. My stomach basically empties soon after every meal. I am tired a lot and feel like I just want to sleep.

I'm not going to lie - this sucks the big one. I was going to try to wean myself from the Lortab, but I'm kind of wondering now if that's the best idea. I wonder how much more painful my joints will be without it?

So, the truth of the matter is that this is the way it is - no matter how much it sucks - so I have to just deal with it. Either way, it still sucks.

Feeling it.

My back aches. My appetite has decreased. I'm losing weight. My skin is clearer. I waxed my facial hair, so we'll see if there are any changes there in the next few weeks. My blood pressure is nice and low (normal) and my blood sugar is much better. I feel cruddy some times and other times feel like I have a lot of energy.

I love to cook and did a lot of that today. The kitchen is really my space in the house. Luckily, I can mess it up all I want and my husband will clean it up. He's one of the beneficiaries of my labors in there, so is perfectly happy to do it. I made spritz cookies with my daugther, apple cheddar muffins with my mom, and I made dinner for all of us to celebrate Christmas Eve. After all of my time in the kitchen, I was so pooped and my back hurt so much, I kind of thought I might have overdone it.

My mom leaves on Saturday to go back to California. Knowing what I know about how I will eventually feel (crappier) and based on what I feel like now, I am worried that I won't be able to do what she's been doing for me. Somehow I have to balance everything so I can manage to do the regular things at home - mostly kitchen stuff.

I'm also worried about staying occupied with things so I don't dwell on feeling crappy or on my situation. My mother being here has been a great distraction from all of that. Halle will still be home from school all next week, but she will most likely want to play with friends. Obviously. I can't drive yet and most of my friends have to work all day, so loneliness is looking like a big possibility. While I love watching Food Network, Giada, Guy, and Tyler can only hang with me in 30 minute increments and they don't really interact or anything... :)

The week after that, my last week of leave, Halle will be in school. I'm hoping to be off of the pain medication by then so I can drive her to school. Also, it will help me tremendously if I can get out - even to go down to Craig's work each day to have lunch with him or something. I can't just sit around at home. By then, I will hopefully be used to feeling crappy and won't sit around feeling that way. I would much rather be out and about feeling crappy if I can.

Tomorrow is Christmas. Actually, it is in 10 minutes here. I know the greatest gift I and my family have received this year is the knowledge that my Cushing's is gone and that I am on my way to recovery now from that and cancer. Not only do I feel the pain and changes happening to my body, I also feel the thoughts and prayers of my friends and family. So many people have been pulling for me, thinking of me, and keeping me in their prayers. I have never felt so much compassion and love in all of my life. It is such a good feeling and one that I know has truly helped me through all of this. Nothing can match the power of good feelings to uplift a soul.

Cushing's Free!

I went to my endocrinologist this morning and he was very happy. He said I had made his Christmas holiday. My cortisol level is 1.3 on dexamethasone (steroid), which means that my cortisol level is totally normal!

We are going to start tapering the dexamethasone from 2 mg per day to 1.5 mg per day. My doctor told me this is when I will start seeing the changes occur. He also said this is when I will start feel crappy. How? Well, apparently I'll feel about 30 years older with aches and creaks in all of my joints and be really tired toward the evening, needing to go to bed earlier than normal. Of course, this won't last forever, so it will be worth it!

I asked about the radiation therapy. My doctor said the oncologist and the radiology oncologists are still debating on whether or not I need the combined radiation/chemo therapies or just radiation therapy. Either way, they don't want to do anything until I'm six weeks post surgery. That means I'm looking at no earlier than the end of January for therapy to start. Radiation therapy will wear me out and make me look sunburned - so that will mean I am apt to be even more tired between the combination of radiation AND tapering off the steroids.

I am nervous about all of this but I know it will be for the best and everything will turn out alright in the end. Right now I am Cushing's free (naturally ocurring, anyway - the steroids induce Cushing's symptoms). I am thrilled. Now I just need to get rid of the cancer and I'll be all set!

No pro sports for me...

My hormones are changing rapidly and are all over the place - like a roller coaster. My endocrinologist prescribed steroids for me and I take them twice a day. I can tell when I am needing the next dose. I'm starting to feel the changes happen - I have lost about 17 pounds within the last 11 days. My energy level goes up and down throughout the day. My chest hurts sometimes - but I am trying to wean myself of the Lortab pain medication. I am sometimes very emotional, and sometimes ultra relaxed. The emotional side is different than it was before the surgery - not so intense, but at the same time, still unpredictable.

I'm going to the endocrinologist tomorrow - I should find out about radiation therapy and the suggestions about how I will address the changes my body is undertaking right now. Cushing's syndrome has so many symptoms, I am trying to follow all of them and see if I can tell which are changing and which are not yet.

The steroids are working well right now I think with keeping me stable hormonally. Of course, this completely makes me ineligible to participate in pro sports. I'll have to stick with just being a fan...

Getting my groove on

I am getting my groove on. I have conquered 2009 with all of its surprises, roller coasters, and frustrations. I have been stuck with a needle more times than I can even begin to count. I have paid more in co-pays than in my whole life combined. I have spent more time away from home than ever before. I have done more research on the Internet. I have seen more doctors. I have had procedures and surgeries I had never even heard of before. I have also met more people in this one year than in any other year before.

What have I learned? I've learned that nothing can stop by - slow me down? Maybe. But I have done it so far - I'm still going. I don't know what it is that makes me like this - strong. I feel very strong. I feel like nothing can get me - that I am somehow invincible to many things.

I have done well in school during all of this and still am on schedule to graduate this May. I am ready to start my last semester. I am ready to go back to work. I am ready to take on radiation therapy.

Of that list I have below, I have been able to accomplish a few of those things already.

Just getting my groove on.