Just when you thought it was safe...

2013 was a coast year for my Cushing's.  The Metyrapone that I get from the NIH has been keeping my cortisol levels down and I take hydrocortisone daily to replace what the metyrapone is blocking.  I pee in a jug every 6 weeks or so and basically go about my daily life like nothing with my body is jacked up.  Until now.  I just couldn't quite close out the year!  And I was so close!  As Maxwell Smart used to say, "missed it by that much..."

My cortisol levels have been creeping up the past few blood/urine tests I've had but nothing that anyone was worried about.  I was still in the low end of normal and even though technically being on Metyrapone means my cortisol levels should be non-existent, no one was too worried.  Until now.  I seem to have made it to the high end of normal which means that a) taking in a full dose of hydrocortisone daily in addition to making my own puts me way over the recommended daily allowance of cortisol, and 2) the tumor that is creating all this havoc is overpowering the medication.  Think of it as an old western...the black hats are winning the shootout...

In response to this change of events, my fabulous team of doctors have decided to add in another medication in an attempt to regain control over my naturally generated cortisol level.  Seeing that I am at the maximum daily dose of Metyrapone, and there aren't any other drugs left for me to try, it's our best (and close to only) bet.  I've started taking a drug called Ketokonazole in a low dose once a day and will pee in a jug (good times!) and have blood tests every week to see if it's working.

Those long time followers of this blog may find Ketokonazole a familiar name.  It was one of the first drugs I was on way back in the early days of fighting Cushings that had a rather bad result on my liver when I was ramped up to a high dose after lower doses failed to budge my cortisol levels.  The doctors will keep that in mind as we watch what happens, and Keith and I will be a little more cognizant of whether or not my eyeballs are turning yellow.  Live and learn...

It's kind of a bummer being back on the weekly jug peeing schedule.  I thought those days were over as I happily was getting used to being stable and only having to do it every 6 weeks or so.  But I also don't want my liver to crap out, and to see symptoms of the Cushings to start appearing again.  My hair is finally grown back for heaven's sake!  How many times do I have to endure it falling out!  So I clear a space in the fridge for my jug, and set up a recurring blood draw on my calendar.  There is not much else to do or whine about.  I was scheduled to go back to the NIH for my annual radioactive scan parade in February anyway, so the timing of this all actually couldn't be better. No matter what happens, by the time we see what my body is doing on the new drug, it'll be time for me to fly off to Bethesda.  Assuming nothing catastrophic happens between now and then my team back there will have lots of data to look at.  It's fun to be a lab rat, huh?

So for right now I'm still going along as normal.  Working, exercising, stripping paint in our house (some things never change!) will keep me busy and my mind off of wondering what will happen and my perpetually upset stomach.  The good news is that it looks like I'm back in the blog business again!  The bad news is that it looks like I'm back in the blog business again!!

Catch up is not a condiment...

So I come back from the NIH with my usual renewed dedication to looking on the lucky side of life. To appreciate what I have and discount that which means nothing in the big scheme of life.  But how do you do that when everything around you screams to be cleaned up, organized, attended to, put on the to-do list, scratched off the to-do list, shopped for, greeted, thanked, tossed out, laundered, fluffed, folded, run or stopped.  How do you stop to smell the roses when that little voice in your head is yelling at you to fertilize, re-pot, trim, and deliver them to a sick friend in need instead?  Bottom line is that I've spent my time since my return from Bethesda endlessly trying to catch up on things that I didn't do while I was gone and that I probably don't need to do now that I'm back.  And yet, I persist...

I understand that it is much easier to let life sweep you along rather than fight the current for the things you think are important.  That's why we say we're too busy to exercise, or too tired to cook, or too old to sky dive.  You have to really make an effort to create the life you want and it's hard.  But I need to get back to reality here.  Life is short.  The good days that include happiness and joy are usually squashed in between those in which we are getting crapped on my some Universal irony that will only be fully understood and found amusing by us on our deathbed.  In the meantime, if the washing machine doesn't get it's monthly cleaning, the dog is late on his/her heartworm medication and the car windows are too dirty to see very well out of, so be it.  The world isn't going to end.  If you run out of hand soap at the kitchen sink, dish liquid will do.  And there is no crime to picking jeans up off the closet floor and wearing them to work...as long as they pass the smell test that is...

I look for your support by joining me in this endeavor.  Throw off the chains of convention and lighten up.  Disregard what you think the neighbors will say.  Stifle that voice in your head.  Laugh out loud at an inappropriate moment.  Wear slippers to the grocery store.  Most of all realize that the world won't end if you enjoy the moment instead of dissecting and sucking the life out of it.  Take it from me and appreciate how lucky you are every day and never, ever forget it.

I'll have a glass half empty...and make it a double...

So what does one do when one gets ejected from the NIH a week early and feels like an epic failure because the tiny little tumor residing somewhere in one's body refuses to come out and wave for the camera?  One wallows.  One wallows big and hard.  And then one gets back to life...

I'm not big on self pity.  Not that I don't feel like it sometimes.  But it really gets us no where.  It makes nothing better, solves no problems and likely makes us feel even worse about things than we were feeling before falling into a pit of darkness.  It's not only unproductive but detrimental for those of us who truly believe that a positive attitude largely contributes to the overall health of the human body.  And yet I have no problem with allowing for a short wallow period when life craps on you in such a pile that a bulldozer couldn't move the refuse.  The key is knowing that wallowing doesn't help in the big picture even though it is a great way to get out the feelings of frustration and disappointment that can be overwhelming every now and again.

My wallows are usually confined to a designated day that has been pre-announced and planned for.  Not a lot of planning is involved, but supplies must be laid in.  Pudding and cookies usually, but for tougher situations nachos and/or pizza may be required.  My chosen method of wallowing involves food, napping and snuggling with the pups.  But others may go a different way.  I've heard tell of crafty wallowers that immerse themselves in projects, cooking wallowers that create baked goods or new foreign dishes that their mate is "forced" to consume, and shopping wallowers that loose themselves in racks of hanging comfort.  Whichever way you choose to wallow, I'm all for it.  No excuses, no explanation.  Just a time to do what you like and what makes you feel good.  Something that you appreciate as a diversion while realizing it for what it is - a diversion from thinking about the really poopy situation you are finding yourself in.

I usually confine my wallows to a day.  After that, I pull my adult panties back up and get on with life.  Even though it has lots of warts and ugliness, it's my life.  The only one I'm allotted and the one I have the power to dictate.  I choose to remember that I am a lucky girl.  I choose to remember that lots of people are dealing with situations that are so much worse than mine.  I choose to remember that if I get mired down in negativity not only will life suck, but I will have given control of the only thing I have in this world over to circumstance.  And I will not do that.  If I need to consume pudding every now and again to maintain, so be it.

Wallow day was last Saturday.  Pudding was consumed....

To glow or not to glow...

What do you do when the best scanning technology coupled with the most toxic radioactive dyes cannot find a tumor?  You go home, of course...

I'm home from NIH a week early with mixed feelings.  I am of course glad to be home with our babies and sleeping in my own bed.  No one, especially a rut oriented control freak like me, likes being away from all things routine and familiar.  And living in a hospital for 2 weeks is never any fun no matter what condition you're in.  So yes, I'm very happy to be home.  But to receive that luxury means that I have to accept the flip side - we didn't find any hint of a tumor.

This is where there is disappointment.  But even that is mixed as well.  I didn't want to let myself believe that we would find my Cushing's tumor this trip.  I didn't want to get my hopes up.  But emotion sneaks in no matter how much the brain tells it to stay away and I'm disappointed that we didn't end this ordeal.  I'm frustrated that I have to keep going on every day taking medication and living in a body that is held together by chemistry and bailing wire.  I'm frustrated that Cushing's for me is an unending saga with no end in sight.  I plan, I figure, I foresee.  I do not "roll with it".  I am not one of those people.  I never have been and I am destined never to be despite the life lessons I am receiving right now. 

I'm also disappointed and frustrated that I'm disappointed and frustrated.  For someone with a chronic, rare and pretty catastrophic condition, I have the best doctors, access to an experimental medication that is working without destroying any of my other bodily functions, and a support system that keeps me going no matter what.  My life is very good.  And a trip to NIH reminds me just how good because I'm surrounded by people who are in very bad shape.  People who are dying or whose bodies are shutting down while I am bee-bopping from scan to scan, injection to injection.  I want to automatically feel lucky and blessed without having to think about it.  But I am human.  A fabulous, Princess-like human and it doesn't work that way. 

I must admit that a part of me is happy with the way the chips fell this time.  I didn't want to have yet another surgery.  I'm not ready to embark on another recovery process right now.  I'm finally feeling good after the surprise hip re-replacement of last summer and I don't want to have someone digging around my innards removing a microscopic tumor and spoiling it.  But in wanting that, I am dooming myself to continuing on the path I'm on - unknown.  In saving myself months of recovery, I'm giving myself months of medication, blood tests and longing for the body I used to have.

But now that I'm home, it's time to fall back in my routine and not think of another trip to NIH for a year.  I'll wallow for a day or so, then get back to the business of living remembering all those people who aren't as lucky as I am. 

It's like deja vu all over again...

Here I am back at the NIH one year after my last stay.  For the most part everything is the same.  Some of the faces have changed, some of the department locations have changed (construction everywhere in the scanning departments.  I have already walked into two walls where doorways used to be.), some of the procedures have changed.  But the routine is the same.  Medication, blood draws, fast/no fast, inject, scan, rescan, rescan again, eat, sleep, start the whole thing over again.  If I'm lucky I can squeeze in workout, a walk outside, go to patient library and maybe watch tv (they have cable here - a luxury we no longer have at home!).  Whatever it takes to not get bored out of my mind in between visits into the "tube".

You'd think that a visit here at the NIH would remind me just how sick I am; something I can easily forget these days.  Sure I have alarms of every kind going off every six hours plus at 3:30pm to take medications, but that's just become a part of the day.  I feel pretty good most of the time.  I am able to work again, I go to the gym, I eat what I want and basically don't have to worry about much of anything...except where my next dose of medication comes from (thank you NIH!).  Next to the other people who are patients here I feel and look healthy as a horse!  An uber fabulous horse, but giddyup none the less.  A stay here at the NIH instead of reminding me that Cushing's rules my life and I'm not the healthy person I look like on the outside, makes me feel a little guilty that I have it so good.  And really, don't we all need that perspective?

I have said it before and I'll say it yet again.  I am very lucky.  I have support and resources that most people don't have.  I also have a disease that most people don't have, but that's a whole other blog post.  For now, I appreciate what I do have.  Later comes later.

Stuff

I think we all have a love/hate relationship with stuff.  Our Laissez Faire, "whoever dies with the most stuff wins", "greed is good", inner Ivan Boeski's drive us to accumulate even though our Real Simple, "you can't take it with you", "less is more", inner Amish tells us to purge.  I am famous (or maybe infamous...) for yelling at the TV while watching my favorite HGTV and Hoarding shows "you don't need more storage!  You need less CRAP!"  So when I found myself in the storage aisle in WalMart looking for additional plastic storage tubs to put stuff in our basement, I had to take a serious look in the mirror and remind myself that maybe I don't need additional places to put my stuff, I need less stuff.  Let the purging begin!

How do I find myself with 6 extra bed pillows?  And more importantly, how did I forget I had them?  I found the mysteriously multiplying pillows in the tubs in the basement when I decided to see if I could free up some space in the bins I already had rather than buying new ones.  How many extra pillows does one household need?  Apparently not 6.  And viola, an empty bin was created.  But the bed-stuff safari had begun and I couldn't stop there.  I pulled out a binkie for a twin bed.  I haven't had a twin bed since college.  Sheets for a double bed.  I haven't had a double bed since before I was married...IN 1993!  Miscellaneous pillow cases were also in there, but I'll give myself those since I had all the pillows which, of course, needed cases.  So in one afternoon I created storage, saved money, and made a huge pile to go to charity.  Well played if I do say so myself.

But this stuff obsession we all have, while lessened during the ongoing economic downturn, still drives us all to forget what's important.  Every purchase and/or acquisition is a choice.  An item or expenditure chosen to be more important than something else.  And for what?  What does all the stuff get us except more stuff and less space in our minds, closets and basements?  What does it add to our lives?  It's probably easier to ask "what does it take away from our lives?"  It takes away the need to deal with an issue that is bugging us.  It takes away the ease of a simple clutter free life.  It takes away the focus we could be making on things that matter more.  And it requires dusting.  And seriously, who wants to dust?

I guess my point here is that life isn't about stuff.  Where to put it and how to clean it.  Life is about the little things that happen around us every day.  Nothing you can accumulate takes the place of the joy in seeing a beautiful sunset.  Or cheering on the accomplishment of another.  Or smiling at a stranger and seeing them smile back.  WalMart doesn't sell that stuff.  Being a valuable and happy human being comes from within, not from the points on your credit card.  Or from the number of bed pillows you accumulate.

Spring has sprung...

Spring is here in all it's glory.  The Easter bunny has come and gone leaving foil wrapped chocolate happiness in his wake.  Flowers are blooming, the grass is green, people are working in their yards and there is a sense of excitement and renewal in the air.  I love the spring.

I thought I might feel different about spring this year given we had no winter to speak of.  We haven't had our heat turned on in months now (US natural gas surplus?  You're welcome...).  But it must just be a calendar driven thing.  The feeling that everything is new again comes each year whether we expect it or not.  Or maybe it has something to do with the sound of lawn mowers and weed whackers in the neighborhood.  Renewal must be mowed...

I'm feeling ready to make a mad dash into spring.  I've gotten caught up since 2012 started on things I've let slide over the past couple of years, and am having relatively good results in my efforts to make changes in my life based on what Cushing's has taught me.  I'm working at easing up on myself.  Seeing the good in every day and not falling back into life patterns that do not include appreciating the things I have.  Drama doesn't interest me the way it used to.  I was never into reality shows, but they are even more ridiculous to me than they were before...and I didn't think that was possible.  Life is too short for drama.  It doesn't matter.  It doesn't bring anything to any one's life and on no one's deathbed will they utter the words "I wish I'd had more drama".  Our goal should be to make each day the best day ever and to change the things that keep that from happening.

We all have the choice of how to react to things.  We have the choice of what to say and how to feel.  Yes, how to feel.  You do not have to accept the initial response you have.  We can talk ourselves down and bring reason in.  It may take a while, but it's possible.  I've had to do it alot over the past couple of years, and it's making it easier to deal with things now.  It's hard to get my knickers in a knot over a line at the post office when I've had to be OK with a medical condition I never expected and that has no foreseeable end.  Perhaps it's what I needed to adjust my type A tendencies.  The Universe is funny that way.

So go forth and adjust your thinking in the name of Spring.  Contemplate life while mowing the grass.  Snip some flowers to enjoy inside instead of just walking by them every day.  Smile for no reason.  And live life as drama free as possible.  Do it for me!