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!