Twas Several Nights Before Christmas...

Here we are almost on the eve of Christmas 2013 surrounded by snow and the spirit of the Holidays.  All seems to have a glow of good cheer  and brilliant possibility for the new year.  All except for me...

It's not that I'm not feeling the Holidays at all.  I am.  But not in a visceral way.  I don't seem to be feeling much in a visceral way these days.  A wall seems to have been hit and I'm trying to figure out what to do now.

Many of you commented over the past years what a good attitude I had.  So positive, so optimistic, so ridiculously good humored.  As if it's time to resume normalcy, I have lost much of that naivete and I'm trying to get it back.  I can only liken what I'm feeling these days to what PTSD must feel like.  You go full bore during the stressful time handling everything like a champ because you have to.  There is a common foe to fight and not to fully commit to doing so would be akin to giving up.  And I don't give up.

But what happens when the problem doesn't go away, but it's kind of...on hold.  Nothing much to do but monitor, watch manically for any indication of a problem, pee in a jug every now and then, and just hang out in a perpetual state of uncertainty.  Accompanied with a low level of constant medication induced nausea.  It's just the way life is.  The new normal has arrived.

But I am a problem solver.  I do, not wait.  I am all about action not inaction.  But there is nothing I can do to change anything.  I do not control my destiny in this particular part of my life and for a person who believes to the quick of her very being that the only thing we actually have in this life is control of his/her destiny, it is not computing.  All of a sudden I find myself devoid of that naivete, that optimism, that energy to laugh about things.  Like all of the energy I expended over the past 4 years has finally emptied my tank.  That's how I feel.  Empty.  Which brings the next question:  How to I recharge?  I don't know how to relax.  I've never known how to do it.  And now that's what I have to do to to get back my life.  Ironic.  Terribly ironic.

So that's what I'm doing.  Trying to relax, recharge, realign my attitude.  And not feel guilty about it.  So far I've had a mix of results.  A couple of panic attacks, but a couple of really great days too.  I figure as long as I can keep that ratio at about 50/50 I'm staying afloat.  Eventually I assume the ratio will tip in my favor.  Until then I'll just keep learning how to be still.  How to have fun.  How to relax.  How to feel happy and care free again.

Of course, on the unemotional side, I do have to pee in a jug and have blood drawn every other week now based on having to add in another medication to bring down my cortisol level which had  decided to creep up again.  And a trip to NIH in February is on the horizon which will include a visit to a brand new scan up and approved to test when I get there!  Woo-hoo!  Back to Guinna pig status.  I can understand that.  I can live with that.  But maybe this will be the time that the tumor will be found and I can stop taking all these meds and get back to my regular life.  Or maybe my new normal life.  I don't know. 

Until then I'm trying to relax.  Am I the only one who doesn't  know how to do that?  Probably.  But I will soldier on.  Wish me luck and good humor.  I'm in need these days.

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.