Remember me?

It seems like quite a while since I posted an entry here.  I couldn't come up with anything to say.  I know what you're saying right now - "Carol couldn't come up with anything to say?  That's a first."  Yes, yes it is.  But be that as it may, my mom always told me "if you can't say something good, don't say anything at all".  You do the math.

Christmas came and went without much fanfare here in the Davis-Nunes household.  Our parents spoiled both us and the granddogs and my friend Wendy sent a care package with goodies for us all.  I was feeling kind of funky though.  Kind of light headed and unsteady.  I took my blood pressure at lunch time and it was 87/58.  No wonder I was feeling loopy!  After a hearty Christmas meal, and perching on the sofa for the rest of the day, my blood pressure was back up by bed time. 

While this episode wasn't the most pleasant in the world, it was actually good news.  Cushings makes your blood pressure go up...way up.  And I've been on a daily handful of blood pressure medication for months trying to keep it in line.  Before I started taking Muffy, it was hovering around 145/95 even with all the medication I was taking.  It has since dropped to the 110/80 range since Muffy.  But it was getting even lower than that in the run up to Christmas culminating with the 87/58 reading.  This means Muffy is working!  Let's take a moment to appreciate that.  Working with my gaggle at the NIH, we have eliminated two of the blood pressure medications from my repertoire.  Now we watch and wait to see if my blood pressure stays around normal, or gets too high.  I'm ready to have to start taking one of the meds again, but so far, so good.

I hope all of you had a great holiday! 

Riddle me this Batman

What do you do when you don't want to get out of bed in the morning?  I don't mean hit the snooze button, pull the covers over your head, call in sick to work, not wanting to get out of bed.  I mean "I don't want to partake in life today" not wanting to get out of bed. 

Every morning I go through a conversation in my head as I lay in my warm bed snuggling with Erin and Alvin.  I don't want to get up and start a day that is going to be like yesterday and many days before.  I don't want to live another day with a body that isn't my own.  Muscles that are sore all the time.  Legs that don't do what I want and need them to do.  Taking a shower is an exhausting task.  Getting in and out of pants, and getting dressed in general, is so hard.  Just try getting in and out of the car with legs that are so weak you have to lift them up manually.  Walking is still hard as the nerve in my left leg recovers.  Blah, blah, blah.

And yet, I still get up.  I still shower.  I still dress.  I still drive and do my errands.  I still walk. And I hate it.  It hurts and it's hard.  I'd rather just stay in bed all day where nothing hurts and it doesn't make me so tired I feel nauseous.  I just keep thinking that maybe today my nightmare will be over.  Maybe today I'll feel normal.  Maybe today I won't have to find a reason to get out of bed.

As time goes by...

I love getting Christmas cards.  Even if it's the only time I hear from people, Christmas cards are the best.  I usually get a picture of the family, and if I'm really lucky, a letter with a synopsis of what everyone has done through the year.  Christmas cards allow me, from afar, to see what my friends and their kids look like and what they've been up to.  I eagerly open every card to see what is inside and feel a twinge of disappointment if there is no picture and no letter.  But I'm finding this year my reaction is a little different.

This year when I look at the smiling faces on the cards, and read about all the activities the senders are participating in, I'm not only excited and interested, but a little envious.  Even if the update is about coaching little league, PTA meetings, and work.  When I look back at 2010, I've got nothing but dealing with medical issues.  No gym, no triathlons, no vacations, no home improvement projects - none of the things I love to do.  Just an ever expanding nightmare of doctors, tests, scans and ultimately no end in sight.

I'd like to be one of those people you see on Oprah that explain how a horrific tragedy in their life turned out to be the most positive thing ever.  And I may get there, but not quite yet.  That doesn't mean I don't recognize how very fortunate I am.  I have insurance, awesome doctors in Kansas City and Bethesda, a husband who is the most awesome husband on the face of the planet, and friends and family that offer support and love without hesitation.  Yes, I am a very lucky girl, but my medical situation sucks big time.

Everyone has some cross they have to bear on any given day.  Cushings happens to be mine.  My number came up, and better me than someone else who wasn't as healthy as I was.  But I lost 2010 and I can't get it back.  So I will continue to live through the activities of others until my time returns.  I don't know when that will be, but that's what keeps life exciting.   

In a holding pattern...

After about 30 minutes of staring at a blank screen, I realize that I have nothing interesting to say today.  Not that what I say every other day is interesting, but you know what I mean... 

I'm still taking Muffy according to the study plan still without any negative effect on my system.  My withered leg muscles are getting a little bit stronger every day.  My blood pressure has come down alot, but not enough to start getting off all the medication I am on to control it.  I've lost a few pounds, but nothing you can notice if you look at me.  My energy level, while inconsistent, seems to be getting better.  So we know Muffy is working, but not as fast as I'd like, and without amazing results that would be good blog-fodder.  I'm just kind of hanging out until things start happening and my symptoms start improving more noticeably.

I had about a gallon of blood drawn yesterday for tests to make sure that Muffy isn't doing any damage.  Thankfully this happens every two weeks now rather than every morning at 6am at the NIH! I'm not anticipating anything bad being found, it will be interesting to compare these results to the results from two weeks ago.  Call me a dork (and many have) but that stuff is really interesting to me. 

So there you go.  You are now up to date with my Cushings status.  Keep those positive vibes coming!

Bah, Humbug!

I may have mentioned it here already (I can't be expected to remember everything I write, can I?) but I'm seriously thinking about taking a mulligan on Christmas this year.  I mean, we have our tree up and decorated, and our stockings are hung by the chimney with care, but I'm just not feeling it.  Even with every other commercial on TV shilling Christmas gift possibilities, the neighborhood  houses being adorned with wreaths, lights and six foot tall candy canes, and holiday cards arriving in the mail. 

If you ask me "what do you want for Christmas?", I can't come up with anything.  It's not that I don't want or need anything.  And I love getting presents as almost as much as I love giving them.  But everything seems a little silly and secondary in relation to getting my life and my body back.    All I really want is for my Cushings to go away, and I doubt that can fit on the Fat Man's sleigh. 

Maybe I'm just worn out.  Too tired to muster Christmas cheer.   I certainly didn't think I'd still be dealing with Cushings at this point in the year when I was diagnosed WAY back in April.  I never assumed that my life would be revolving around doctor appointments, medications and scans either.  But I am, and it does, even though I'd give almost anything for that not to be so.  It's hard to get around it no matter how much I love a good Christmas carol and cup of nog.

So this Christmas I will take a mulligan.  Well, maybe just a partial mulligan.  I won't skip Christmas completely - after all, I do have the tree and stockings up.  But don't be surprised if you see six foot tall candy canes in our yard next spring. 

Let them eat nachos!

I have often said in this blog as well as verbally to anyone who would listen, that all I wanted to do when I didn't have to watch my diet so closely was eat a plate of nachos bigger than my head.  Why nachos?  Because I love them in all their cheesy, beany, meaty, chippy glory.  Why a plate bigger than my head?  Because when you've been so good for so long anything less than overindulgence is just wrong.

Yesterday was the day that my strict diet was kicked to the curb and nachos were consumed! 

My friend Carrie and I decided to make an outing to eat nachos, and do a little shopping at our favorite JC Penney outlet.  Carrie and I are quite the pair.  She has endured surgery and just finished her last round of chemo in treatment of breast cancer.  For the two of us, energy and stamina is unpredictable at best, and appetite comes and goes.  Yesterday the stars lined up and the heavens shone on us, and we both felt good enough to go big!

I won't drone on about the pleasure I derived from our plate of nachos.  Sometimes when you anticipate something for so long, the real thing can fall short of expectation.  That was NOT the case here.  The nachos were eaten and enjoyed beyond measure.  I am including a picture of the best nachos ever below:

We also made a great effort at the JC Penney outlet.  I even picked through the racks in the really big girl (remember, I look like Shrek these days) department looking for a things that might fit me.  We hit most of the departments and ended up in catalog returns testing out the sofas.  OK, it was only one sofa, and we weren't so much testing as collapsed on it.  Our energy had run out.

It was a great, normal few hours for two girls who don't feel normal about very much in their lives right now.  And let us not forget that there was a plate of nachos bigger than my head.  And it was good.....

I'm a rakin' fool

I know it sounds weird, but I've always liked raking leaves.  Most people hate it, but I like it.  It makes your yard look nice and it's a great workout.  Unlike many of the chores in and around the house, there is a noticeable change for the better in the appearance of a yard after a good raking.  Since I've been home from the NIH, I haven't had the energy to go out and rake.  I stare out the window at the growing layer of dead leaves wanting to go out and rake up a bag or two.  Keith has managed to keep us from drowning in leaves, but he isn't as passionate about raking as I am.

Maybe the leaves this year mean more than in previous years.  This year I can't do the work in the yard that I want to.  That is much different from being able to do it and just not wanting to.  Maybe raking has become a symbol of the helplessness I feel because my body isn't the same one I used to have.  It doesn't look the same, feel the same, or act the same as it used to.  Or maybe I just like a neat yard...

Well, this afternoon I was a raking fool in the back yard!  I was having a good energy day, and decided to rake a little rather than just staring out at the leaves.  I made several big piles of leaves, and raked up a significant amount of doggie-doody as well.  I only made a small dent in the work that needs to be done, but while I was raking and bagging I felt normal.  A small bit of normal, but normal none the less.  And normal is good...

The little engine that barely could.

Keith is in our nation's capital for a conference.  It's only been a couple of days, and he comes back tomorrow.  In the big scheme of his business trips, this one is Shorty McShort.  In his absence I am charged with walking the pups.  This is nothing new, but my current physical condition makes those walks far more interesting.

The first little issue the three of us had was getting down the steps in front of our house.  The pups know that Mom isn't good at stairs right now - they go slow and stay behind me when we're on the inside stairs.  So I figured that mindset would apply to the outside steps as well.  These are dogs and I'm working out in my mind what they are thinking.  Perhaps I should have seen that as my first mistake.  After locking the front door we all made it to the first step and, while I was contemplating, balancing and focusing, Erin and Alvin had already made it to the bottom and were headed to the walk.  The problem was that they were attached to me via leash!  I yelled at them to sit before I got dragged down my own front steps and thankfully they remember that command and sat.  They did expect a biscuit for their trouble, but they'll get over that.  So I slowly got down the steps and we started up the sidewalk.

I'm already breathing hard at this point, but the dogs are going nice and slow.  For once I don't mind that they are stopping to sniff every tree, bush and leaf pile.  We get to the corner and cross the street.  I'm already sweating and have started to waddle from side to side a bit.  As we make our way up that block, I start to walk in a crooked line.  I looked like I had been drinking my breakfast...and not in a good way...

By the time we turned our final corner and headed (thankfully downhill) back to our house, I felt like I had run a marathon.  Erin and Alvin were pulling me along and I was glad they were.  All I wanted to do was get home and not keel over in a bush along the way.  I was still waddling, weaving, and sweating, but at this point I didn't care.  I just wanted to get home.  Going up the front steps was another slight ordeal.  Let's just say that Erin and Alvin will never qualify as sled dogs.

So what is the moral to my story?  I don't really know.  Maybe it's that the definition of "normal" changes depending on your circumstances.  Maybe it's that sometimes you have to start at the bottom and work your way up.  Or maybe it's that everyone should teach their dogs to carry them when necessary.  You all can decide.

Stairway to heaven...OK, just the second floor...

I am not one to shy away from a good workout.  I never would have thunk that a good workout now means getting up the stairs.  There is no longer any bounding in my climbing stairs.  No running, hopping, bouncing or speeding.  No hurtling, dashing, scurrying or zooming.  My legs are too weak from the Cushings and my left leg has a nerve controlling it that is learning how to work again.  So getting up the stairs is more of a hoisting process using the handrails (thank you Travis!).  I know the more I make the journey from the first floor to the second, or the second floor to the first (no hoisting, but much holding on and trying not to fall my way down) the better my recovery will be served.  But needing a nap after a few times up and down is nothing I ever expected.  Since I find it impossible to live solely on one floor (and seriously, how can you pick between the floor with the fridge and the one with the bed?) I will persevere.  Eventually there will be bounding instead of hoisting and I will not feel like climbing the stairs is a workout!

Just to update you, I am back on my Muffy as of yesterday.  The whole Adrenal Insufficiency scare was a false alarm.  All the tests show that my system is normal and stopping Muffy didn't make any difference in the way I was feeling.  So Muffy is agreeing with me and not causing any noticeable side effects.  I am taking antibiotics for the vicious, man-eating cold and I feel better already.  Hopefully I'll have more energy as the days go on.  After all, I gotta get up and down those stairs!

Two weeks and counting

The vicious, man-eating common cold is finally in retreat.  I'm still blowing my nose and coughing up phlegm, but not nearly as much as I was.  This is great news for me since obviously I have no patience for a runny nose and head full of phlegm.  Bad news for sales of Kleenex however...

Today marks two weeks being on Muffy. The study protocol requires certain blood tests and other things be done every two weeks.  In order to prevent me from having to go back to NIH every two weeks, they worked out what they need with my Endocrinologist here.  This is awesome for me since I'm all of 5 minutes from his office.  Not that I don't love my Gaggle at NIH, but let's face it - anyone who needs to travel at this time of year has to armour up before they leave the house.  And let's just say my armour retired when I did.  In addition to seeing my Dr. here every two weeks, I also am in communication with my Dr.'s in Bethesda via phone and e-mail.  All the attention and none of the hovering.  I love it.

Unfortunately we have hit our first speed bump in the Muffy parking lot.  I have not been feeling very well in a variety of ways not attributable to the vicious, man-eating common cold.  I could chalk up everything to some reason or other, and nothing really matched up with side effects I was supposed to be looking out for.  But I let the Gaggle know anyway.  I might be experiencing something called Adrenal Insufficiency (AI) where there are not enough adrenal hormones.  As I mentioned before, Muffy doesn't reduce my cortisol levels, it just blocks what the adrenal gland is producing.  If I have AI, it means that Muffy is blocking too much.  The fix will be a reduction in dose.  We should know tomorrow if AI is the culprit.  If the culprit isn't AI, then we have to fall back and regroup. 

Lesson for today: regulating the body's chemistry is not an exact science.  There is some trial and error that happens along the way because the body is such an amazingly complex piece of machinery.  I'm thinking we'll just work through this little hiccup and get me feeling more human in very short order. 

Riddle me this Batman...

How is it that I can endure weeks of blood draws, scans, injections, pills, IV's and being radioactive feeling relatively good, but the common cold makes me want to curl up in a heap and surrender!  I woke up on Thanksgiving morning with the sniffles and a scratchy throat.  By the time the day was over I knew I was a goner.  Friday and Saturday I didn't venture far from a horizontal position either on the sofa or in bed.  There was much nose blowing, coughing, sneezing and general moaning about how this is the worst cold ever known to man.  Thankfully this morning found me feeling much better as the dreaded man-killing cold begins to move out of my system...

So far it seems that Muffy is still coexisting well with my system.  I don't notice any reduction in my Cushings symptoms, except that my blood pressure is back in the 120/80 range.  This is good news because even though I'm taking about a million different blood pressure medications for Cushings related hypertension, before Muffy I was still hovering in the 150/100 range.  Whether this change is Muffy related or not, I'll take it.

I'm still watching out for side effects that could be problematic.  Muffy works by blocking the action of cortisol in my system.  I am still producing too much cortisol, but my body now doesn't pay attention to all of  it.  The biggest problem with this is there is a possibility that the cortisol may be blocked too much and I go into something called Adrenal Insufficiency.  And that's bad.  But, in what I am sure is a concerted effort  by the Cushings Gods to drive me insane, the symptoms of Adrenal Insufficiency (AI) are tiredness, weakness, stomach ache, low blood pressure and joint aches.  So I'm supposed to be able to draw the distinction between AI and the need to take hydrocortisone STAT, and the way I have felt most of the time for months.  If anything can make me paranoid and a hypochondriac, this will!

Feeling Thankful

I love Thanksgiving.  I have always felt a warm spot in my heart for a holiday that is built around a calorie-laden meal, falling asleep in front of the television, and getting along with members of your family that, on any other day, drive you  absolutely insane.  But this year, the meal was secondary for me.  Even with pie.  This year I feel so lucky to have such wonderful blessings in my life.  Yeah, I've got some crappy things too.  But here are just a few things that I feel thankful for...

My fabulous husband - The best husband EVER!  No more need be said.
Erin and Alvin - Puppies with issues that make our family complete.
Doctors who care - Sadly not everyone has that luxury.
Friends who care - They keep me going when I need a lift.  They make me smile when I need to laugh.
Good Literature - It transports me to other places when I need to get away from this one.
Hot Air Popcorn - A big bowl of yummy.
Good Running shoes - I'm looking forward to putting them to use again soon.
Sugar Free Vanilla creamer - It makes my coffee taste like cake.
My Heated Mattress Pad - Creates a little cocoon of warm heaven.
Roses - Any variety, anywhere.  Beauty on a stem.
NPR - Makes me think about things I wouldn't otherwise have thought of.
Hope - You can never have too much, and you can have as much as you want.

I hope all of you gave thanks yesterday for the blessings in your life.  Even the tiny little things that bring a smile to your face.  Life is too short not to acknowledge the things that keep us going.  The things that make us happy.  The things that keep our glasses half full.  And pie...

Normal is as normal does...

Ah, to be home.  The most fabulous and wonderful place ever.  The place with my stuff, my food, my trash.  My oatmeal tastes 100% better in my bowl.  Mine, mine, mine.  All mine!  Home...

Needless to say I made it back to Kansas City yesterday pretty much without a hitch.  A mechanical problem with the plane delayed our departure from Baltimore, but other than that it was smooth sailing...I mean flying.  I was greeted with lots of puppy kisses when I got home which made me even happier.  Today I'm nesting and organizing - basically reveling in being home.

I brought a bag full of Muffy home with me as I continue to participate in the study.  Aside from the initial problems with my potassium and sodium, Muffy seems to be sitting well with my system.  I'll be having a blood draw on Friday to make sure nothing is going wrong, and of course many follow up tests and documentation to do, but so far so good.  I even feel like I have more energy.  That could be totally a placebo effect but I don't care.  I'll take it!

To top off the giant helping of normal today, I'm going to Target.  You don't get much more normal than that!  Life is good!

Home Sweet Home

I am going  home tomorrow!  How awesome is that?  My body seems to be tolerating the Muffy medication well so far, and my gaggle here has spoken with my endocrinologist in Kansas City regarding the testing that needs to be done for the study I am in.  There is no barrier for me making a break for it!

They take such good care of me here at the NIH Clinical Center.  But being here is mentally and physically exhausting, and frankly I need a break.  I need to sleep in my own bed, snuggle with my dogs and my husband, drink my coffee the way I like it and live in my routine.  The  fact that there won't be a phlebotomist knocking on my door at 5:30am every day to take vials of my blood is just icing on the going home cake.  Not to mention this is a holiday week and being home for Thanksgiving would do anyone a world of good.  mmmmmm.......pie......

There are some very specific requirements in the study protocol for tests and other things.  Right now it looks like most of it can be done by my Dr. in Kansas City.  That will be great if it happens.  It means I won't have to return here until mid-January if everything goes well.

Tomorrow at this time I should be home.  Know that I will be the happiest Cushie on the face of the planet! 

Ambulatin' and Hydradin' (NOT!)

Saturdays and Sundays are very quiet here at the NIH Clinical Center.  VERY quiet.  I was going to say "dead quiet" but that might be in bad taste considering where I am.  They try to get patients in on Sundays and out on Thursdays, so by the time the weekend rolls around, there are very few patients, only enough Nurses to tend to the patients that are left, and rotating on-call Doctors.  Remember, this is first and foremost a research facility and secondarily a hospital.  My Gaggle is off on the weekends.  Memo to med students: go thee into research!

I decided to focus on back surgery rehab this weekend.  Oh yeah, remember that little incident?  It was the surgery I had at the beginning of October? The one to fix the herniated disk I didn't know I had?  The disk that was impinging the nerve doing damaging it and leaving my left hip in excruciating pain, my leg weak, and my foot flopping, tingly, and no longer under my control?  I haven't really had the chance or the energy to focus on that and today was as good a day as any to start.

Needless to say I woke up this morning feeling relatively good.  And it was a beautiful fall day here in Bethesda that just begged me to get outside.  So after the usual morning rituals of vitals, medications and blood draws, I hit the road.  OK, more accurately, I walked slowly and deliberately using as close to a normal gait as I have had in a long time.  However you label it, I walked outside around the campus for 45 minutes working up quite a sweat in the process.  After lunch and a sufficient rest period, I hit the road again.  I stayed inside this time though.  I did laps around the atrium slowly.  This is hard stuff! 

The good news is that it feels like the nerve controlling my left leg is slowly coming back.  It's going to take alot more work on my part, but I feel like if I put the effort in, I'll get some good results.  So if you see a very slow, tiara wearing, Fabulous Pink Cane using walker in your neighborhood, just know you are in the presence of a recovering Princess!

On the Cushings front, my potassium and sodium levels are back in the normal range.  Sadly I'm still on very restricted fluid intake (thus hydratin' NOT!), but hopefully I'll be released from that when my Gaggle returns on Monday.  Funny how much better I feel when they get things like potassium and sodium levels where they are supposed to be.  Who knew those things were so important?

Where oh where has my potassium gone?

One of the possible side effects of taking Muffy is a drop in potassium.  Yesterday mine fell through the floor.  I don't know why that's a really big deal, but it is.  Bottom line is that from about midnight to 5 this morning I was either taking, waiting for, or being tested after IV bags of potassium.  Unfortunately potassium isn't a pleasant thing to have dripping into you and brings more than a little burning and stinging with it.  Enough to keep even seasoned sleepers like me awake and uncomfortable.  The good news is that by morning that level was stabilized and I can take pills to keep it where it needs to be.

My sodium level has also dropped today which is not quite so easy to manipulate.  So I'm on restricted fluids right now to see if my body can straighten that out. For a water drinker like me, this is really a test of wills.  I've been thirsty all day...maybe it's psychosomatic...

The scans I had this week did not turn up any tumor.  The news is disappointing, but not a surprise.  We will keep looking at probably 6 month intervals theory being to give the tumor time to grow and show up on scans. 

I'm continuing to take Muffy the study medication and aside from the potassium and sodium issues it seems to be setting with my body pretty well.  Now we just have to wait to see if it is having the desired results on my cortisol level.  Hopefully we'll know more about that early next week and I'll be on the road to recovery.  If all your appendages haven't cramped up yet, keep them crossed for that!

Can you see my aura?

Today I was radioactively awesome all day.  Up, down, back and forth the Fabulous Pink Cane and I went to the neuclear medicine wing.  Of course the downside, aside from the whole radioactive thing, was that I couldn't eat all day.  Nothing makes a Cushings girl crankier than when you don't feed her.  Especially when you load her up with chemicals.  So immediately upon leaving my last scan I hoofed it to the nearest snack counter in the lobby for contraband munchies.  A girl's gotta do what a girl's gotta do...

It looks like Muffy has kicked in and my blood pressure is coming down markedly.  This is really good news and a much needed little plus to the situation.  However, I won't find out what effect Muffy has had on my cortisol level until I meet with my Doctors tomorrow.  Muffy needs to bring my cortisol level down into normal range, and while I'm not sure if it happens this fast or not, that's the goal.  The Doctors didn't really have any question about whether the study drug would work, it's just whether it will work enough and whether my body will tolerate it.  So far so good on the tolerating part.  It's the work enough part that the jury is still out on.  Keep all those appendages crossed!

Tomorrow when I meet with my Doctors I will also have the results from this week's scans.  There is always hope that the rogue tumor will be found on one of them.  Hope does spring eternal as they say.  If that's the case we make yet another sharp turn on the Cushings superhighway and get rid of the little bugger.  If not, we make a plan based on the blood work, medication, and study protocol.  In any case, I should know before the weekend what's going on.  And when I know, you all will know.

Go forth and be fabulous!

A teaching moment...

I thought I'd take the opportunity to enlighten you on some of the knowledge I've gained during my stays here at the NIH Clinical Center:

• When someone tells you "it'll just be a little prick", get ready to peel yourself off the ceiling
• Peeing in a jug gets old after 4 days
• There is no time of the day or night that is off limits to get blood drawn
• Your poop matters
• When stuck in a scanning machine with your arms over your head for 45 minutes, your shoulders start to hurt...and your hands, elbows and biceps go numb
• When stuck in a scanning machine with your arms over your head for 45 minutes and you have to pee, tough luck
• When injected with radioactive goo, you will set off personal radioactive detectors
• The number of times a medical professional tells you to relax is inversely related to the amount you actually can relax
• No matter how bad you feel, someone always feels worse

Today I started the study medication that will hopefully succeed in bringing down my cortisol level into the normal range.  Keep your fingers crossed it works without inflicting side effects that are more detrimental than the Cushings itself.  In the meantime, I'm still getting scanned, drained of my blood and peeing in a jug at all hours of the day and sometimes night.  Neither the fun nor the hope ever ends...

test 1,2...test 1,2...is this thing on???

Today found me falling back into the routine of blood draws, pee collection, scans and drinking funky stuff then seeing what it does.  Woo hoo!  Part of what we're doing is getting the required baseline data together for the "Muffy" (Mifepristone) medication study.  Those items need to be completed before I start taking the medication on Wednesday morning.  I also have a couple of more scans to have done now that we're back looking for an ectopic tumor.  So I am just busy busy busy!

I did get a bit of good news today.  It seems my body's ability to deal with metabolizing sugar is holding firm.  It's not getting worse.  That is great news.  I don't know why that is, but I'll take it.  Given that there are symptoms of my Cushings that have gotten worse since my last visit here, I am very happy.  Maybe that means my diet lock down has helped?  Who knows?  But I'm not taking a chance on that plate of nachos bigger than my head quite yet. 

One of the more interesting (to me if no one else...) baseline tests I did today for the drug study was a standard cognitive test that they give to all the participants.  Not anything complicated.  Just some memory, logic, and common knowledge questions.  Cushings can markedly effect your ability to concentrate and think clearly.   While I got all the questions right, it did take much more concentration than it should have.  It does prove, yet again, how much worse off I could be right now.  I could be going through this while having trouble thinking too!  I mean real trouble!  That would definitely be bad...

Tomorrow is more tests, more peeing in a jug, more blood being taken, more scans.  That should keep me busy until we start on "Muffy" medication to try to get my cortisol levels down on Wednesday.  It's an exciting week!!!

What's up next for the Princess?

OK, so we know that no tumor was found during my Pituitary surgery.  The Surgeons are expecting pathology results tomorrow, but are not hopeful that anything is going to be found.  My Cortisol levels are not coming down at all.  That in and of itself is puzzling to the Neuro team just because any shock to the Pituitary should have an effect on what it puts out, and mine, after being chopped up and left with 30% of what it started with, is still putting out like a house on fire.  At least we know my pituitary is healthy!  You may be asking "just where does that leave our Princess?" and after meeting with my Gaggle of Doctors on Friday,  I can partially answer that question...with caveats...and variables...and contingencies...

We have kicked the Cushie-mobile into reverse, backed up the pituitary off ramp, and merged back onto the ectopic tumor highway.  The NIH detectives have returned to looking for a rogue tumor somewhere in my body that is sending signals to my adrenal glands to produce cortisol full speed 24/7. I have several more muy radioactive-o scans to complete during my (extended) stay here that may still turn up the little bugger.  These are scans I didn't have during my September visit because we decided that the probability was higher that the tumor was in my pituitary.  The Doctors don't want me exposed to alot of extra radiation if I don't need to be.  So keep your fingers crossed that we will actually find the source of my Cushings in one of these scans.  Based on my track record up to this point however, while I am cautiously optimistic, I just can't really cross that threshold into hopeful.  

Where does that leave me in the meantime?  Medication.  Medication to control my cortisol level.  More specifically to bring it down.  My Endocrinologist in Kansas City prescribed the most common and well-tolerated medication for cortisol control way back in June, but as we have seen so many times before, I didn't react quite the same way to it as most other people did.  I had quite a bad reaction to it actually that involved my liver function and we pretty much can scratch it off the list of viable drug options for me.  That leaves two options that are currently on the market - one that is so toxic my team of Doctors does not even want to try it, and one that odds are will be ineffective on my condition based on how high my cortisol levels are.  Does anyone else feel that we've just gone down that one way street that ends with a brick wall in a car that has no reverse gear?  But this is the NIH, and I am in the care of the best Cushings team anywhere. It seems they have one pharmaceutical card left to play.  There is a study out of France on a drug called Mifepristone (Keith and I are calling it "Muffy" for short) that looks promising in the control of Cortisol production in ectopic Cushings patients.  We're going to try this medication hoping that it will get my system back in order while we continue to look for the root source of the Cushings.  If everything goes according to plan, I'll start taking that on Wednesday.

And there you have it.  Re-cross those fingers and toes and keep sending those positive vibes.  This week is going to be busy and hopefully will yield some good results.  I will, as always, keep you posted with breaking developments and nuggets of humor along the way!

Are you smarter than a 5th grader??

The answer for Keith and I is apparently not...

We decided to play a new board game last night here in the day room of the Neuro unit.  They stock quite the variety of fun games and activities with which visitors can occupy themselves.  Wednesday night we played Scrabble, one of Keith and my favorites.  We usually play without controversy, and always without keeping score (Does that make it Socialist Scrabble?  Discuss amongst yourselves...).  Last night we decided to put our expansive California public elementary school education to the test and play a game that involved identifying states on a US map and, if you really want a challenge, identifying the capital of the state.  Needless to say we made sure the day room was empty before we began so that there would be no witnesses to the humiliation we were anticipating.

We opened up the board that was just a map of the United States with each state labeled with a random number 1-50.  There was a spinner whose arrow would point to 1-50, a cheat sheet with which state corresponds to each 1-50 number and its Capital, and dice for moving your marker around the perimeter of the board.  And away we went.

Almost from the first spin of the arrow we were in trouble - and we were just trying to identify the location of the states!  We didn't undertake the naming of the states AND capitals until our next game!  We learned immediately that the northeastern seaboard is a problem.  Too many states, too small an area and no symmetry.  Who designed that nightmare anyway?  I do believe that every state up there was identified as New York on one spin or another.  Pretty soon every state in the Union was deemed New York on first glance before any serious attempt was made to identify it.  The southern gulf states would have been a  mystery had they not been covered in oil sludge and by the news media within the past 6 months.  I am convinced that I was never taught the mid west states in elementary school due to a California bias and conspiracy probably stemming from language hidden deep in the Farm Bill.  Western states, while few and spacious, could only be named if entered or exited during some memorable (and not always in a good way) car vacation taken during childhood.  And did anyone else notice that as soon as they moved the back seats of the car farther away than dad's arm length from the front, they had to start putting in DVD players, cup holders and electric shock equipped seats?  Again, discuss amongst yourselves...

I did the best I could to drag state location knowledge from my grey matter and didn't even play the "but I just had brain surgery" card.  I got states like Arkansas (thanks to Carter and Jen), South Dakota, Alabama, Oklahoma and a few others much to my surprise.  And there were some that I just knew.  Of course I also blankly stared at New Mexico completely mystified as I did with Massachusetts, New Hampshire (yes, as a matter of fact we did live up there for a time...), Delaware, and Montana.  Keith beat me around the board on which state was which, although he got mired in the northeastern seaboard at one point and almost didn't get out.  That was about the time that every state became New York and we were laughing so hard we were crying.  Milk coming out of the nose laughing.  Disrupt the whole Neuro ward laughing.  Stress relieving laughing. 

I did much better when we moved on to identifying not only the state but the capital.  I could remember most of the state locations from the first game (technically is that cheating or having a good memory??) and somehow I have retained some of Mr. Schaeffer's 6th grade drilling of state capitals.  "No, Billingsly is the actress that played the Beaver's mother, not the capital of Montana."  "Yes, Arkansas does have a capital."  "I swear, Pierre IS the capital of South Dakota." 

Bottom line here is that we needed a good laugh and we got it.  Keith and I may not be able to identify where we are on a map, especially if we're anywhere on the northeastern seaboard whether we've lived there or not.  But we proved for the millionth time during  our 17 year marriage that we can laugh our asses off in the face of anything.  Adversity, stress, peeing in a jug, no matter what it is.  Laughter makes it all bearable.  That and a good map...

I just had brain surgery...

...what was your name again??  Ha, ha...just a little brain surgery humor!

First of all, let's take a minute to ponder this little fact.  On Monday afternoon (not even at the ass-crack of dawn) I had brain surgery.  On Wednesday morning I was in the shower washing my hair and not hooked up to any drugs or catheters.  Amazing?  Yes, I think so too.  Tuesday was a bit ugly, but not as bad as Keith, I, or the Doctors expected.  In fact most of the people who saw me Tuesday said I looked great.  Boy do they have a warped sense of "great", but I digress...

The pituitary surgery went great.  They took out 70% of the gland.  Did anyone out there know that you only need 20% of your pituitary?  I didn't either.  So they left me 10% more than I need!  Awesome!  The slightly bad news is that no tumor was found.  That doesn't mean it isn't there and will be found when they dissect and study the tissue they took out.  But that will take weeks.  So for now, the next step is to monitor my cortisol levels starting tomorrow and see if they come down on their own over the next week or so.  If they do, that means that the tumor causing my Cushings was in the pituitary tissue that was removed.  If my cortisol levels stay high, then we know that the problem did not originate in my pituitary and we have to continue to look for it somewhere else and start with medication. 

I appreciate the fact that most of you have never had pituitary brain surgery before,so I'll include a short description of the procedure.  Squeamish readers please skip the next paragraph....

The neuro surgeons made an incision between my upper lip and my front teeth so a)I have no visible scar and 2)no hair shaved on my head.  From there they went up through my nose, broke a couple of small bones at the back and into my brain to the pituitary.  The surgeons, one of whom invented this procedure, took out the portion of the pituitary that has the best odds of housing the tumor.  They played the odds game after doing some micro-slicing to see if they could find something.  After taking out what they needed to, they filled my nose with packing, sewed up the gum line under my lip, unscrewed my head from the holder, and sent me off to ICU where I spent a thoroughly unpleasant night.  A little pain medication, a few tears, and some great ICU nurses got me through Monday night.  Tuesday morning they unpacked my nose (NOT fun) and deemed me able to be packed off to the neuro unit where I will reside probably until Saturday.  Tuesday afternoon was pretty much just getting adjusted to the new surroundings and being monitored by the Neuro Doctors and Nurses.  I was back on solid food (amazing!), but my mouth was pretty sore, so it was soft solid food on Tuesday.  But this morning I tried pancakes, and chewing them went fine.  So today there was a sandwich for lunch!  Granted it had to be deconstructed a bit to get into my still sore mouth, but it was still a sandwich!  Did I mention this is Wednesday and I had brain surgery on Monday? 

So I'm hanging out in the Neuro ward here at the NIH Clinical Center, peeing in jugs, getting blood drawn, hoping that my cortisol level is falling as I write this.  You all hope for it too and maybe I can catch a break!  And of course, I will keep you posted of the events along the way!

Surgery is complete

Carol's surgery is complete and she is stable, which is exactly as it should be. The surgery went very well. There were a number of contingencies and back up plans at the start and none came into play during the operation. That is very good news

Unfortunately, the bad news is there was no tumor. That doesn't mean the pituitary gland is not the source of Carol's Cushing's, but there was nothing out of the ordinary. So the doctors took a part of the pituitary (you only need 20% for normal function) and sent it to pathology for examination.

So, once again, we wait. We should know more Wednesday or Thursday.

I will update everyone when I know more and in the mean time, please keep those good thoughts coming.

And away we go

Just to keep everyone up to date. At 1:30 pm EST Carol went into surgery. It may take anywhere between 2.5 and 5 hours so we have a bit of a wait ahead of us. I will try to keep everyone posted when I know more.

Carol was slated to go second today so that is why we the surgery is happening in the afternoon.

Keep thinking good  thoughts.

Keith

Latest update

Still waiting ...

It's go time!

Junior cadet blogger reporting for duty!

This is Keith. While Carol is away the next few days I will be filling in here at the Cush life. Check back later. As I know more I will be sure to update the masses.

What are we doing right now? Sitting... waiting ...and waiting.

There once was a Cushie from Denver...

Oh, come on.  Don't tell me you've already heard this one!

There is another Cushie down the hall from me here at the NIH Clinical Center and I had the pleasure of meeting her yesterday.  I had seen her on Friday, but Christie is lean, in shape - very outdoorsy looking - and very energetic.  It didn't even occur to me she might have Cushings too seeing as outwardly she is the exact opposite of what I am  right now.  But she does. 

Christie's Cushings has come back after dealing with it here 3 years ago.  Her cortisol levels are as high as mine, but she isn't seeing symptoms yet.  They found the problem early since she gets tested periodically based on having a history of Cushings.  The source of her Cushings was an ectopic tumor in her lung behind her heart that was removed along with a portion of her lung and lymph nodes.  But as can happen, they think the little bugger may have grown back and the gaggle of NIH Cushings Doctors are hot on it's trail.

We compared crazy symptoms and reactions to medications, and best of all for me, she showed me her before and after pictures.  Before the Cushings went away, and after it went away that is.  I must say, I never would have recognized the person standing in front of me as the one in the picture with Cuishings.  Just like no one here recognized me as the person in my pictures before Cushings.  Now I have proof that someone inflated like a blow-fish, walked around like Shrek, but went back to their normal self as soon as their cortisol levels went back to normal.  Not overnight, but it does happen.

Woo-hoo!  As God is my witness, I shall be able to wear a ball cap again and a necklace again! 

Has anyone seen my patience??

Because I think I lost it somewhere between Kansas City and Maryland...

I had a lovely blog post in mind for this morning when I went to bed last night about how lucky I am to be receiving the level of care and professionalism that is being given to me here at the NIH Clinical Center.  After a long Friday of tests and talking with Dr's, Nurses, Techs and medical staff of all sorts, I am even more thankful to be here if that is possible.  But, knowing me, sometimes I wake up on a different side of the bed and this morning it was the impatient one...

Every now and again I get overwhelmed by the desire for this whole nightmare to be over.  And I mean overwhelmed.  I want to get back to my life, my body, my activities, my happiness - all the things I worked so hard to cultivate and nurture in my life. The last year and a half has been dominated by medical issues, pain and limitation and quite frankly I'm tired of it.  Yes, you heard me.  I'm tired of it.  I'm human, so there it is. 

Monday's surgery is the light at the end of the tunnel.  No matter if they find the little bugger in my pituitary that is causing the Cushings or not, I will be on the road, some road, to recovery.  If they don't come up with a tumor, we opt for a medication based solution.  If a tumor is found, they get rid of it and we start getting my system back to normal from there.  Either way, I'm on the road to somewhere as opposed to where I've been for most of 2010 - in the breakdown lane on the medical highway to nowhere.  Funny thing about a light at the end of a tunnel though.  It makes you want to pick up the pace to get there quicker.  Sprint to the finish if you will.  And yet the clock knows nothing of sprinting and pace.  It knows only the same click of seconds, minutes and hours, and no amount of wishing makes it go any faster.

So this weekend is all about patience and not watching the clock.  I want Monday to get here NOW, but that just ain't gonna happen.  So I will amuse myself as much as I can, read, walk, nap, and bide my time as it passes.  But truth be told, I'm tired of being patient, I'm tired of waiting, and I'm tired of being tired.  In case you thought I was handling my Cushings like a Saintly figure, rest assured I have my moments.  Rest assured I am human.  Rest assured I am still the Princess that you all know!

It's deja vu all over again

And not just because Jerry Brown got elected Governor in California...What ever happened to Linda Rondstat anyway??...

Here I am back at the NIH Clinical Center in Bethesda MD and it's like I never left.  I've already been poked and prodded this morning, had blood taken and peed in a cup.  My day could be called complete already just based on those activities.  But wait, there's more!  I have something called a "pre-anesthesia clinic" this morning, and a couple of PET scans this afternoon.  Boy, the fun never ends here.  I tell you what!

Getting here yesterday was uneventful but exhausting.  Even with the Fabulous Pink Cane walking is taxing on the old legs, and couple that with long periods of sitting and my poor muscles didn't know which way was up.  It was nice to fall into bed last night, even if it was a hospital bed, and even if it didn't contain two pups to snuggle with.  But today I feel good and ready to get this party started. 

Pituitary surgery is Monday so start thinking good "they're going to find something in there" thoughts now.  The sooner we find something the sooner I can put Cushing's behind me and get back to my "normal" life!!  And my plate of nachos...

Can I get a flock???

We've all heard that counting sheep helps you fall asleep.  I've never understood why.  Why sheep?  Why not robots?  Or ants?  Or puppies?  Why sheep?  I need to know because they aren't working for me.  Although, truth be told, the robots aren't doing any better...

I haven't had a decent nights sleep in I don't know how long.  I may have mentioned it here before, but Cortisol production in a "normal" body goes down at night so you can sleep.  If you have a body like mine in which Cortisol production never goes down, it's a struggle to get it to sleep all the way through the night.  And this is a problem.

I love my sleepy-by time.  Love, love, love.  I would have put it in my "Favorite Things" post, but couldn't get the pups to take a decent picture of me sleeping.  It's a lack of thumbs thing.  Anyhoo, my sleepy-by time has really taken a hit and I'm starting to get a little pissy.  Let's face it - you would too if you're staring at the ceiling every night between 1am and 4am wondering whether to crack open the book on the bedside table, or just give falling back to sleep a go because maybe this time it'll work.  Admittedly, sometimes it does.  What wonder!  What Ecstasy!  But more often than not it's the book or solving all the world's problems in the wee small hours of the morning.   FYI, you'll be getting the memo on Israeli/Palestinian peace in a future blog...

Bottom line is that among all the symptoms of Cushing's I'm looking forward to shedding when this saga is over, insomnia is among those at the top of the list!  I may just go into hibernation for a few weeks.  Take to my bed as it were...with a plate of nachos bigger than my head and ice cream...lots of ice cream...  

Don't blame global warming for hell freezing over!

Rather give the Giants credit because they WON THE WORLD SERIES!!  Take an umbrella with you today wherever you go - flying pigs are predicted.

For those of you who do not follow Bay Area baseball, or Major League Baseball at all for that matter, the San Francisco Giants took the World Series last night by besting the Texas Rangers in Arlington TX 3-1 in game 5. Since moving to SF from NY in 1958, the Giants have not won the series and in this house, the victory was sweet...and loud.  The pups retreated to upstairs as my adorable husband screamed like a little girl when the final Ranger out brought a close to the game and the series.

I must admit, I didn't follow the Giants with anything more than a cursory interest for most of this season.  Their propensity for snatching losses out of the jaws of victories is legendary and quite frankly a little frustrating if you are trying to be more than a fair weather home town fan.  I also didn't recognize any of the names of the players.  Little did I know that this rag-tag (can you really be rag-tag when earning more money in a season than most average people do in a lifetime?) group of baseball players was just the underdog I should hitch my cart to for inspiration.

The media says that the team is made up of "a rare mix of veteran rejects and budding stars".  How awesome is that?  That's exactly who I want to bask in the glow of victory.  The players who others wrote off, and those who people have, as of yet, not much confidence.  Either way, internal strength and unwillingness to accept the limitations imposed by others helped this team get to the pinnacle of baseball this year.  That and  a  little luck.  

I may not be vying for the title of Best Team in Baseball (I'd like to though...Brian Sabean, call me!) but it's good to know that old guys who were written off, and young guys who are a little unconventional can pull it together to defeat a viable opponent,  I'm not saying which group I identify myself with more, but suffice it to say, I'm taking a page from their playbook.

Happy mulligan to me...

mul-li-gan (noun): a free shot sometimes given a golfer when the previous shot was poorly played

Technically today may be my 46th birthday, but you'll understand if this year I have decided to take the proverbial mulligan and put off the celebration until my Cushing's condition has, at least, been mitigated.  I love my  yearly "Carol Palooza" as much if not more so than the next Princess.  I mean, what could be more suited to Royalty than a designated day that revolves solely around her birth?  But this year I'm tired, I don't fit into any clothes, my hair is a little patchy, I'm avoiding sugar, carbs and fat, and I'm still walking with the Fabulous Pink Cane.  I just don't feel like breaking out the Palooza today.  But I will soon...and then, be afraid - be very afraid!

On this, the dawn of my 47th year, I find I have no philosophic adages to impart, no sage advice to give.  I've got nothing else but what we all already know in the backs of our minds:

• Live life to your fullest capacity every day
• A pity party is OK every now and again as long as you get back up in the saddle of the horse that threw you
• Ice cream is good
• Never give up
• Accommodate your weaknesses
• When in doubt, put on a tiara
• Appreciate everything in your life as the gift it is
• Take time to really see what is around you
• Life is a freakin' strange ride

So, in honor of my mulligan, eat, drink and be merry.  Have some Halloween candy, sing "happy mulligan to you", smile, and don't forget to stop and appreciate.

GO GIANTS!

Normal? Seriously?

If it's one thing I don't feel these days it's normal.  Normal in a human sense, normal in a feel healthy sense and definitely normal in a Princess Carol sense.  There is no normal in Carol-ville.  But yesterday came close.

I woke up to yet another day of no pain from the nerve in my left hip/leg (that made it 3 in a row for those of you keeping track), and a pretty good energy level.  So I did my usual morning chores and tasks - laundry, clean up the kitchen, balance the checkbook, filing and shredding in the office, etc. - and decided to blow the doors off in the afternoon by undertaking a bigger project.  I have learned to lay out my days like this through experience.  The things I feel I have to get done must be tackled in the morning because my after lunch energy levels are unpredictable at best.  You can have the most detailed to do list in the world but if you can't lift your head off the sofa it doesn't really do any good!  Afternoons are wild cards but yesterday I figured I had a good shot and having the energy to do something a bit bigger than usual.

I cleared out and organized part of the basement!!  What?  You thought I was going to say "I built a new addition on the house" or something?  Not yesterday, maybe tomorrow.  Anyhow, there were several boxes and bins of things that haven't been touched since we moved in 5 years ago and that means, in the Princess world, that we probably don't need what's in them.  I was on a mission.  I won't bore you with the spidery, dirty (and not in a good way) details, but at a slow pace a garbage bag was filled, a donate-to-charity pile was created, bins were emptied, empty boxes were put in the recycling and space was made!  I didn't have to do any heavy lifting (still restricted due to that nutty back surgery of 3 weeks ago), and not too much walking either.  But I did get to organize and clean out which a) I LOVE and 2) makes me feel normal.

The even better part of this story is that I still felt good after the basement project.  Again, good is relative.  But no pain in my hip/leg, and no complete and utter limp-as-a-rag-doll exhaustion!  Winner!  However, in the spirit of full disclosure, I was in bed by 7:00. Oh come on!  Like I never did that before the Cushings!!!

So yesterday was a great day.  And today feels good so far.  Whether I'll feel normal remains to be seen, but a little taste of normal from yesterday can carry me for a while.  And I just have to make it to Thursday when I get on a plane for Maryland...unless something changes...again...  

Fall into fall

I love the fall.  It's my favorite season of them all.  The weather is perfect.  Not too hot, not too cold.  Not to humid, not too dry.  Not too much rain, no snow and ice.  Lots of sun, but no burns.  Awesome.  Some may deride the falling leaves as a personal affront perpetrated by the trees to fill weekends with raking rather than playing golf or watching football on the TV machine.  I do not share this view.  Raking is productive exercise!  If you rake, you don't have to go to the gym.  And your yard looks fabulous too!  What could be better than that? 

And the fashion choices.  Out come the turtlenecks and light jackets.  You don't have to bundle up like Nanook of the North just so that body parts don't freeze and fall off on the walk from the parking lot into the grocery store.  Pull on a sweater and a pair of jeans and you're good to go.  Love that! 

Even the food changes in the fall, and we know I'm all about the food.  I've got my Crock Pot loaded up with Red Beans and Rice as we speak!  Comfort food reigns during the fall months and Lordy Lordy I can use all the comfort I can get these days.  We don't feel the need to order a salad when we're out, Pinot is subbed for Chardonnay, and roasted root vegetables accompany lovely cuts of red meat and the boneless skinless chicken breast go the way of the salad made with spring greens for the time. 

I am very much going to enjoy today as the wind blows the leaves from our neighbor's trees into our yard.  While my red beans and rice bubbles away and fills the house with fabulous cajun comfort food smells, I'll get my chores done and maybe a few errands too.  I hope you enjoy the day as well!

GO GIANTS!

Hitch 'em up, move 'em out...

I realized this morning that it has been a few posts since I have mentioned my back.  Sometimes it amazes me that having an operation on my back, for a condition I didn't know I had that was creating a major physical problem requiring me to walk with a cane, scheduled within 2 days of flying back from the NIH, with a Neurosurgeon I hadn't met until less than 24 hours prior to surgery, isn't the biggest medical thing I'm dealing with this month!  Is this Universe crazy or what?

So here's the update.  I can feel the hitch in my giddy up becoming a thing of the past.  That feeling is based in part on the physical progress I'm making, and part on the mental aspects of just having my herniated disc fixed and the effected nerve starting to regenerate and learn how to function normally again. 

The physical progress I'm making with my hitch requires concentration on every step I take.  I  use the Fabulous Pink Cane instead of favoring my left leg even if I'm not having an "angry nerve day".  Those days come every few, especially if I've been doing alot of walking (relatively speaking).  It doesn't help that due to Cushing's induced muscle atrophy, my legs are so weak, they are slow to pick up the slack and re-learn how to hold me up correctly.  But as soon as the Cushing's is nipped I can return to the gym and rectify that problem.  Hopefully by then I will have taught my left leg how to walk correctly without thinking about it and my motion will just keep getting better and better. 

Mentally, finally getting something fixed and feeling better for it has been a HUGE positive for me.  I had gone for so long just feeling lousy.  Yes, we were ruling things out, and that is progress with the Cushing's.  And yet I was getting no closer to feeling any better - in fact, I was feeling worse as the days passed.  My left hip and leg were giving me alot of pain that I thought was part and parcel with all the other Cushing caused medical wheels that were falling off my cart.  It weighs  on you.  Pain makes you a little crazy.  And not being able to solve it makes you a little insane.  Now we solved something.  And despite the days that my left leg nerve revolts, I feel better.  There is a light at the end of the tunnel and I just have to get through it.  No matter how long that tunnel is, it's likely I will not emerge on the other side with a hitch in my giddy up!

GO GIANTS!  

I scream, you scream, we all scream...

...for Ice Cream!

Do you know how long it's been since I have had ice cream?  Longer than it's been since I've had a good (or bad for that matter) glass of chardonnay.  And that officially is way too long!  Why is it I don't just go to my local HyVee, plunk down my dinero, purchase a box of wine and gallon of frozen fabulousness and sit with my stemware and spoon until both are drained down to the cardboard?  Aside from the intestinal implications, there is a huge reason - control.

If we go back a few weeks, you'll remember that in one of my posts I mentioned that technically, according to one of the tests I had at the NIH, I am now a diabetic.  Cushing's effects the body's ability to breakdown sugars and the possibility of developing permanent diabetes is very real.  The trick is not to tax the body too much until the Cushing's is under control so that everything goes back to normal.  Luckily I read this very early on in this saga, and have been watching my diet.   The American Diabetes Association website is great for giving tips about things to eat/not eat, what things break down into sugar in your system faster than others (this is great for choosing which fruits and veggies to eat), and even recipes.  And since I actually like brussels sprouts, broccoli, bulgur wheat, brown rice, and other healthy stuff, and I have a  pretty good rudimentary knowledge of nutrition, it hasn't been too hard to stick to a diabetic diet better than, I suspect, most diabetics. 

But back to my point about control.  There isn't much about my Cushing's situation I can control these days.  My body is doing what it wants regardless of how much I will it to do otherwise and this is not a good situation for a classic obsessive/compulsive like myself!  I can control what I put in my mouth though, so I have latched onto that like a shark on a surfer.  So when you read that I am once again dreaming about a plate of nachos bigger than my head, know it is borne out of deprivation, but deprivation necessary on several levels - my body and my OCD brain's need to control. 

How does this relate to ice cream?  I let myself have some yesterday and it was GOOD!  A dear girlfriend who was exposed to my Wednesday meltdown surrounding the rescheduling of the surgery brought me my favorite ice cream and a very special (and very worthy of the Princess I am!) bowl out of which to eat it.  And I did.  And did I mention that it was good??  So the moral of this story (and perhaps yet another life lesson??) is even a control freak needs to relax and let a little joy in a fabulous Princess bowl into their lives every now and again!  So, my dear Readers, go forth and indulge in a little bit of your favorite thing this weekend in honor of the Princess.  And if you can do it while wearing a tiara, all the better!!

The Royal Bowl

Two weeks notice

Flexibility is a virtue, or so I hear.  The Universe is trying to teach me about virtues like this (read "the ones I don't have") and I gotta tell you, I'm on life-lesson overload!

Yesterday afternoon I received a call while I was throwing dog hair covered clothes into my bag for the today's trip back to Bethesda.  The call was from the Nurse of the pituitary surgeons who were scheduled to perform my exploratory surgery on Monday.  Hetty was telling me we have to reschedule the surgery for Monday 11/8/2010.  At least that's what I thought she said because all of a sudden things started getting a little fuzzy and if I wasn't already sitting on the floor of my office I would have ended up there.  I was already checked in for my flight (bless Southwest Airlines), Jason our trusty house/pup sitter needed to be cancelled/rescheduled, Keith needed to reschedule airline tix and a week off work, and most importantly, I was counting on finally getting an answer, whatever that answer is, and now I have to wait another 2 weeks.  Can't focus...room spinning...A voice in the distance saying "Carol, are you still there?"...

OK, back to reality.  The big hoo-ha NIH/UVA pituitary surgeon Dr. Oldfield has a conflict and needs to reschedule.  I know these things happen, and they happen to me enough that it shouldn't be surprising anymore.  So I am officially rescheduled to have surgery on November 8th.  I'll return to the NIH Clinical Center on November 4th.  At least that's the plan right now.  Lest you think there is no glass-half-full aspect to this, the new flights I booked are direct, at better times, and $2.50 cheaper than the ones I was going to take.  Winner!!

Yes, I'm disappointed that we are not getting this show on the road today.  Yes, the prospect of living on a diabetic diet for yet another 2 weeks makes me want to throw myself in front of an oncoming pastry cart.  Yes, I am desperate to get back to the life I had 1 1/2 years ago before Cushings symptoms started showing up and before I had and recovered from hip replacement surgery.  But it's two weeks not an eternity, and disappointment won't kill me.  So here I am in holding mode, but still a lucky Princess.  A Princess who is learning the virtue of flexibility...

GO GIANTS!! 

 

Winner!!!

I just got a Fed-X from the Neurosurgery team at the NIH with another "Consent to Participate in a Clinical Research Study".  I am racking these thing up like chips in a huge poker pot!  Basically I'm on board with giving anyone at the NIH permission to learn anything from anything they do to/for/with me during my Cushing's journey.  I am such an anomaly at this point that if no one learns anything it will be a monumental bummer!  Like I've been saying, it's a good thing that my ever burgeoning gaggle of medical professionals like a good challenge otherwise I'd be up a stinky creek!

I'm leaving for Bethesda on Thursday.  I'll have a bunch of pre-op tests done on Friday and pituitary surgery is scheduled at 8am on Monday morning.  Saturday I'm going to try to get out on the Metro and pick something in Washington DC to visit, but truth be told, my energy level has been in the crapper these days and I don't know if I'm going to make it.  But the Fabulous Pink Cane and I will do our best and you, my loyal readers, will be the first to know my sightseeing destination...or lack thereof. 

I have to keep this post short because the Giants just came on the TV and I must watch my hometown boys as they face the Phillies.  GO GIANTS!!

No photos, please!

A few have asked if the couple of pics I have of me on the blog are current.  Indeed they are not.  Not at all.  There hasn't been a picture of me taken since last December when, in the preliminary throes of Cushing's symptom development (although I didn't know it at the time), I succumbed under protest to the annual picture being taken for the Holiday card.  Actually, in the name of full disclosure, the photographer at the NIH in Bethesda did a whole photo shoot with me to document my condition and accompany my medical records in the Cushing's research study of which I'm a part.  But needless to say, those pictures will NOT be used in this year's Holiday missive.  Although I suppose it's as close as I'll get in my life to a Playboy pictorial...oh, sorry...those of you who drink may commence now to get that vision out of your mind...

In my mind, I currently look like a cross between Jabba-the-Hut and Shrek.  Not green, not drooly, but definitely in the body shape and form department.  My adorable husband disagrees with this analogy, and yet it's my blog and I'll say what I want to!  Anyhoo, one of the things Cushing's brings with it is fat build up in the torso, upper body and face, and distention of the stomach that makes me look like I swallowed the basketball instead of taking an 8-foot jumper with it.  As if that wasn't enough to send me running from any camera lens (plus mirrors, windows, and shiny reflective objects...) my hair has fallen out several times.  And not in a good way.  It comes out in patches all over my head.  And just when it starts growing back, another wave of random balding rolls in.  Send hair growth vibes because at this moment we are on a growth upswing and nothing much to speak of is falling out!  Yee-ha!

I do not consider myself a vain person.  I certainly have never gotten by on my looks.  But when you look in the mirror and you see someone staring back at you that you don't recognize, it hits you hard.  I am surprised at how it has effected me.  The biggest thing I am looking forward to when we get my Cushing's under control is my face and body going back to my own face and body!  Who knew when we started this whole thing that would even rate on the priority list at all?  I certainly didn't.  Then you all will be bombarded with pictures.  I don't know when that will be, but it will be.  So if this year's holiday card includes a picture of a random stranger, or of the pups and Keith without me, chalk it up to my vanity...that and no one needs a holiday card from Jabba or Shrek this year!

GO GIANTS!

A stitch in time saves nine.

What the heck does that even mean?  I suppose, now that I think about it, the implication is if you nip something in the bud, it saves a whole bunch of necessary and probably more painful nips later.  I think I need to work on getting to the stitch in time...nipping in the bud as it were.  I believe my current medical situation (pick a malady, any malady) illustrates beyond the shadow of any doubt, that nipping and stitching are not my forte.  Yet another life lesson to absorb from all this...

I got the stitches in my back out yesterday.  Did I mention how much I LOVE the neurosurgeon who performed this miraculous little bit of scalping/lasering/whatever-he-did?  I only had about 5 stitches in the small of my back, right in the center.  A far cry from last summer's 30 staples in my heine I must say.  The incision healed very quickly and I haven't had much of a reminder that I even had stitches back there except for the need to change the dressing on it so that my clothes didn't irritate the area.  Dr. Lovick did remind me that I could still pull the incision apart if I lifted too much, or was careless in my activity, but other than that, he sent me off sans stitches and with a clean bill of back health.

Since this little piece of life changing surgery, my left leg and foot are like different appendages.  Not even close to back to normal, but SO much improved I can hardly believe it.  I can flex my foot up further than I could before, and while I don't have total control over it, I have more than I did and it's getting a bit better every day.  The tingling in the foot is lessening every day, and the pain in my hip only rears it's ugly (very ugly) head to tell me I've walked a little too far and I need to take it easy.  My gait is coming back slowly, but I'm diligently working on making every step I take count in that respect.  It'll be a learned thing, and I don't want to learn it wrong.  I'm banishing that hitch in my giddy up!  Keith is patiently walking at my pace with the pups around the block at lunch which is sadly quite the workout for me.  Soon I'll be able to progress to maybe a block and a half without him to monitor my safety!  We all have to have goals!  And at about that time, it'll be next Thursday and I'll be on my way back to MD to try to find the bee-bee in the pea we call my pituitary gland.

This will be an October I'll never forget...although in some ways I'd like to...

So there you go.  My back, so far, is a huge victory.  I was due for one, and I got it - chalk up one for the Princess! 

Raindrops on roses and whiskers on kittens...

Part of what is keeping me cheerful and, quite frankly, going during some days is surrounding myself in things that make me happy.  These things are not huge things, nor are they valuable things, but they make me smile.  Sometimes that's the best medicine there is.

Because I know you are all interested...or are at least a captive audience right now...here are a few of my favorite things:

Sorry I couldn't include a picture of a plate of nachos bigger than my head, but that will come my friends, that will come.

Take a moment to recognize the little things in your life that make you smile.  Because that's really what life is - a bunch of little things all strung together to make a big thing.  Think of how much better life is if those little things include stuffed cows and sugar free vanilla pudding!

What is the overdraft fee on an energy checking account?

Because I bounced a bunch of checks yesterday. 

In Bethesda I talked such a good game about pacing myself, how it's ok to rest, and learning to set my activity expectations at a more realistic level for my current condition.  It all went to heck in a hand basket when I got home.  Yesterday I finally got the message loud and clear.  I am an utter and complete failure at pacing myself.  Is anyone out there but me SHOCKED??  Yeah, I didn't think so...

In my defense, I never realized that baking muffins (sugar free of course) would be so exhausting.  Or doing and folding laundry.  Or walking around the block.  Or balancing the checkbook.  Or taking out the recyclables.  Or trying to do all that plus in one day...with no nap...It still just doesn't occur to me that doing low activity things will wipe me out and I need to take breaks during the day so that I don't end up flat on my back comatose and feeling like I got hit by a bus. 

I suppose something can be said for not expecting oneself to have limitations, but a case could also be made that not doing so is delusional.  I need to find a happy medium.  I have never been a happy medium person, so this is new territory for me.  Today my priority is exploration of that new territory.  I'm going to concentrate on it.  And tomorrow and the next day I will concentrate on it.  I will have to concentrate on not overdrawing my energy checking account until it comes naturally.  Will it ever come naturally?  Who knows.  I may fall into bad habits again when this Cushing's ordeal is over purely because I can.  But I have to believe that a lesson is indeed learned here somewhere and it may be the most valuable one of all. 

Dude, where's my Asia?

Back in the day when, at least in the California public school system, we all believed that hunkering down under a 600 lb. solid steel desk would protect a person from nuclear annihilation, the lore of Columbus Day was pretty much cut and dried.  Christopher Columbus was a great visionary who, in the name of scientific exploration, set out to discover the New World and became a navigational hero in the process.  I could swear I cross checked and validated this view, as I usually did when I was in elementary school, with an episode of Schoolhouse Rock but I cannot find any SR reference to Columbus Day on line.  Does anyone else smell a conspiracy here?

After doing a bit of reading this morning in preparation for a fitting Columbus Day tribute blog post, I realize that Christopher Columbus was no more or less a flawed bumbler just like the rest of us on this round or flat(whichever you choose to go with) earth.  Curiously that gives me pause and confidence all at the same time.
He thought he discovered China and Japan, even though it was Haiti and Cuba.  Sr. Columbus collected specimens of men, gold, herbs, and animals to bring back to the King and Queen to claim in the name of Spain to expand it's wealth and influence.  Oh, and they wanted to convert everyone encountered in the exploration to Christianity by whatever means necessary.  I don't remember that being part of the deal that I learned in Mrs. LaRue's class...

Anyhoo, the guy had the balls to set off in a new direction from Spain, explore uncharted waters (literally), lead 3 ships worth of sailors that were getting a bit cranky by the time they found anything, and believe that his way of life was the way all people in all lands should live.  Oh, were I to have that kind of confidence.  Of course, Christopher Columbus was totally wrong about where he was, and America was already "discovered" by the Vikings, but who is going to argue those points when a day off school is at stake?

I give Christopher Columbus props for trying.  For getting out there and giving it a go.  Too many of us just let life and opportunity go by without taking it by the tail and shaking it for all it's worth, or getting dragged behind it for a distance.  Either way, you can't say you didn't try.  And if you call Cuba Japan, or Haiti China, in the process it's a small price to pay for living life to the fullest and not letting it live you. 

  

And we're walking...

Yesterday's big outing was a walk around the block with my Sweetie.  And it was one of the best walks ever!  The weather is on the perfect side of bearable here in KC right now and our neighbors were out working in their yards making our cute little hamlet of a block even cuter and hamletier.

The priority of the Fabulous Pink Cane and I is getting my gait relatively hitch free, so we all walked slowly and with purpose.  I tried not to think about the fact that I am physically challenged by walking around the block.  This too shall pass, and there are bigger fish to fry right now...and I seem to love fish these days...

I still marvel at the reduction in pain in my hip after my back surgery a little over a week ago.  It's like a miracle.  Now the real work starts so that I can take advantage of the benefits.  Just give me a project to work on and I'm good.  Waiting and uncertainty not so much.  Thus is the way my life divides these days though and I can't waste my energy on fighting it.  I just have to dive in and do what I can.

We will be making another pilgrimage around the block today and I am looking forward to it.  Again, trying not to think about how physically challenging it is, but instead focusing on the benefits.  Me without a hitch in my giddy up.  Who'd ever think that was possible?  I see the promised land and I'm on my way!!  One step with the Fabulous Pink Cane and my Sweetie at a time!

GO GIANTS!!

  

Life is like a box of nuts and chews...

There are days when I fail to find any humor in my situation, and yesterday was one of those days.  That doesn't mean that I don't recognize every day how fabulous my life is.  But sometimes even I need to have a little pity party.

Somewhere in between the 3X daily monitoring of blood pressure, taking of a handful of daily medication, watching my ankles swell over my shoes, trying to walk without a requisite hitch in my giddy up, sticking to a diabetic friendly diet, sticking to a low salt/low fat diet, walking for exercise, resting for, well, because I have to, trying to get my atrophied legs to get me up the stairs in the house, looking in the mirror and seeing a face and body that isn't my own, and giving myself blood thinner medication injections into my belly, I got a little cranky. 

My mama always said that life isn't fair, and I believe it.  I've always believed it which is probably why I don't get too hung up on "why me?".  But sometimes trying so hard to do all the right things in a bad situation gets a little overwhelming.  Especially when the bad situation drags on and on for an indeterminable period of time.  So yesterday I had  a pity party all to myself.  There was wallowing.  There was also dime store tiara wearing, stuffed cow hugging, and doggie snuggling with sloppy kisses.  And today, I'm back Baby!  The Princess has recharged her batteries and it's back to all good!

Bottom line here is, in my opinion, a good wallow in one's own puddle of self-pity isn't a bad thing every once in a while.  There is something to be said for just getting out the negative feelings.  But you have to get back on the horse, look for and appreciate the positive things in life, and gravitate to the things that bring strength and happiness.  Even if all you can muster is a tiara and a stuffed cow!

Go forth and appreciate.  Hug a friend.  Notice the brightness of the world around you.  Smile for no reason.  Or with good reason.  And be happy.    

And we're walking....

When you've had a hitch in your giddy up for as long as I have, how long does it take to re-learn how to walk without it?  After last Friday's back surgery, that is the million (Billion?  A million doesn't go as far as it used to...) dollar question these days. 

My gait is a conglomeration of accommodations.  Trying to mitigate pain and weakness has left me with something looking like a drunk, off balance, hobbler when I walk.  Some, at this point, may say "seems like what you look like when you're walking is the least of your problems".  They would be right, but this is me.  I can't fix much, can't control much when it comes to my medical condition these days.  But darn-it-all-to-heck, I can try to walk like I was sober!  And in case anyone was indeed wondering, I have been stone sober for way, way, WAY too long!  But I digress...

So my post-back surgery project is to walk slowly, and relearn symmetry.  The Fabulous Pink Cane is very much in use to keep me balanced and as little a hazard to myself and others as possible.  Cushing's induced muscle atrophy in my legs makes this project a little harder, but I will be even again!  As God is my witness, I will be even again!

I will be walking alot between now and when I go back to Bethesda for Pituitary Surgery.  Hopefully I'll be able to do it in a relatively straight line by the time I leave on the 21st.  Maybe you'll see a video here on the blog.  I hear I can include that...I just need to find a 6 year old to show me how!

The Bat Man Cometh

Those of you who have ever owned a house know that just when you need nothing to go wrong with it is exactly when a wing will fall off, a room will spontaneously combust, or the heat will run cold or the a/c will run hot.  Am I right or am I right? 

While I was at the NIH Clinical Center in Bethesda, Keith was forced onto the battlefield in the house against a fierce foe.  The evil home invader was a steroid induced BOUS (Bat of Unusual Size) that did much damage psychologically to my Wesley (Keith, for those of you who have not seen The Princess Bride), but thankfully none to the house itself.  It was bigger than a Clydesdale with a sour disposition and an ugly reputation.  It taunted Keith, flying just out of range of his swinging tennis racket.  Of course, I don't want to think what would have happened if he had actually made contact...Anyhoo, the BOUS disappeared into some crack or crevice of our old girl not to be seen again.  But the Josh, the Bat Man, was called.

There were several places and ways the BOUS could have gotten in, and we gladly paid Josh to deal with them so that a tennis racket would never again be swung against a living, breathing organism in this house.  Due to the rain that was pummeling KC while I was away, the bat plug of the chimney had to wait.  Lucky for us as it turns out...

So Josh, the Bat Man, and his trustee minion Kato (the trustee minion is always named Kato, isn't he?) came yesterday to finish the bat job, but we also had something new for them - a stench of death and decomposition emanating from somewhere in the basement.  Keith couldn't find the source of the smell, and quite frankly, bbq tongs, safety glasses and gardening gloves seemed inappropriate protection given the level of the stench.  So we added the challenge of finding and mitigating the source of the smell to Josh's task list.  He and Kato seemed to relish the opportunity.  Based on the smell, Josh was thinking possum or raccoon.  But as I looked at Kato, I stared into the eyes of someone who knew his future included a crawl space, a mask, and later in the evening, a large alcohol based beverage.  I struggled with the urge to offer him the bbq tongs, but felt that perhaps he would not find the humor in it.

Long possum short, Kato found the decomposing varmint wrapped in a pile of old insulation in the crawl space, while Josh, the Bat Man, was up on the roof performing the balance of the chimney work to prevent future bat entry.  It definitely pays to be the boss in this case.  They found what seemed to be the entry point for the possum superhighway and proceeded to formulate a plan to plug several trouble spots.  They'll be back at the end of the week to finish the job.  Keep your fingers crossed that nothing else comes in and dies by then.  I don't think we (nor Kato) could handle it!

Needless to say, I missed my nap yesterday afternoon.  A situation I fully intend to rectify this afternoon.  And yes, the stench is gone.  Winner!



   

Big trip to Target yesterday!

Wow, what a great time I had!  Don't get me wrong - I totally exhausted myself.  But my cart and I made it around every inch of that store.  I felt like I was on my way to getting back to doing what I usually do.  And there are times when a person needs to experience that feeling.  I can't say it enough.  You never really appreciate what is "normal" until there isn't much of it...

I filled my cart with soap, jersey pants, air fresheners, and miscellaneous items on my list.  I puttered up and down just about every aisle with a smile on my face.  The staff was starting to turn the store for fall, and loading up the new merchandise on the shelves and racks.  A new beginning.  Hopefully a new beginning for all of us.

As if that wasn't enough, then I went to the grocery store.  Not quite the same zen experience, but still a "normal" one.  Needless to say, there was a long nap taken yesterday afternoon!

My advise to you all after such a morning of adventure?  Appreciate and smile at the little things in your life.  And don't let your kids pick the shape of pasta you're going to buy at the grocery store - it can only lead to bad things!

I can't back out now!

I admit it.  I've been keeping something from you all, my faithful readers.  I said on Friday that it was a big day and that I would be filling you in this weekend.  So here it goes...

One of the things I have mentioned that I was dealing with is a left foot flop that was leading me to use my Fabulous Pink Cane in order not to trip and fall.  It was becoming more pronounced, as well as my entire left leg becoming much weaker than my right.  Preliminary testing while I was in Bethesda led to the conclusion that the situation was not Cushing's related.  Overall muscle atrophy is definitely a symptom of Cushing's, but the specific things that were going on in my left leg were not explained by that condition.  Neurologists were called in, tests were performed.  Low and behold, yet another medical malady was discovered.

I have been walking around with a herniated disc in my back that has done damage to the nerve controlling my left leg.  You may insert "duh, you idiot" here.  Be that as it may, it resulted in the excruciating pain in my left hip, radiating pain down the back of my leg, and eventually the inability to control my left foot.  The neurologists all agreed I needed to get the disc fixed as soon as possible in order to give the damaged nerve the best chance of regenerating.  But none of them would venture a guess on whether or not I would ever get full function back in the nerve.  Yeah, no pressure...

The neurosurgeon who will be performing my pituitary surgery on October 25th agreed with the diagnosis on my back, and also agreed that I needed to get it fixed as soon as possible.  He gave me the date of October 11th.  If I could have surgery done on or before October 11th, I'd be fine for him to operate on the 25th.  And so the race began.

My FABULOUS primary care physician, Dr. Anna Giocondo, came through for me yet again.  She made a call to a neurosurgeon who met with me on Thursday (yes, I flew home from Bethesda on Wednesday in case you were unclear on the timeline...) and I was in surgery at 7am on Friday morning.  After a night in St. Luke's hospital, I was home Saturday (yesterday) and here we are on Sunday.  Talk about moving at the speed of light.  But I cannot say enough about the motivating aspect of people in the know telling you that you need to take care of something or risk permanent damage that no amount of grit and determination will fix.  It kind of lights a fire under any ass if you know what I mean.

The good news is that I already feel better.  No real pain to speak of remains in my left hip, and I can already feel a slight improvement in the control of my left foot.  Of course I do feel like I had surgery on my back.  God bless oxycodone.  But I'm getting around quite well and in my glass half full world, it can only get better from here.  So chalk this one up as a victory.  It wasn't necessarily fun getting to this point, but now that I'm here, it's all good!