Myonical Bionical

Sooo…. We had a bit of a scare here recently… 

Miss Maddie-Me has been hitting all her milestones just peachy but about a week and a half ago I noticed she would do something odd.  At random moments her arms would stiffen and shoot out into the air or her whole body would stiffen and jerk back.  It just wasn’t “normal” looking behavior and had us concerned enough to try to catch it on video to show to our doctor.  We had our doctor and another doctor look at it and while there was a range of possible diagnoses, the one that kept coming up was “infantile spasms.” 

If you aren’t familiar with the term “infantile spasms,” you might be shocked at just how serious this seemingly innocuous sounding problem really is.  We took to Google and were subsequently terrified at what we might possibly be facing.

Our next step was to get an EEG for Little Miss so we waited for the call from scheduling.  Meanwhile, it was the weekend, and Maddie had an episode that lasted far longer than before and seemed to be having many more than her “usual.”  We made the decision to drive to our nearest children’s hospital ER that had pediatric neurology services.

We arrived to the busy ER about 2.5 hours away and were in a room and seeing the doctor within 30 minutes. Again, we were told we needed an EEG and they could perform one and have a neurologist see us the next morning… so that’s how Miss Maddie’s first hospital stay was written in the books.

Our EEG was in the morning – it was a traumatic experience for all involved - and we nervously awaited the results.  The neurologist came to see us and the first thing he said was “Her EEG was completely NORMAL.”  I think our first words were “Thank GOD!”  Or at least that’s what I said in my head… He went on to then say he wasn’t exactly sure what we are dealing with but that he is pretty sure it wasn’t in the epilepsy family.  Of course since Mads didn’t have any spasms during the procedure its hard to tell exactly what happens but the “hypsarrythmia” in “infantile spasms” would have shown up if she had that.  Our differential diagnoses currently are: Benign Myoclonus of Early Infancy or Sterotypies.  We think the myoclonus description sounds exactly like what she does. 

So what’s the plan of action?  We have to log any events she has and possibly capture more video and return to the neurologist in May.  Depending on how things are at that point, we might have a 24 hour video EEG ordered. If we notice any regression in her developmental milestones or progression in the severity of her episodes we have to call much sooner.

We would appreciate all your thoughts and prayers as we work to figure out exactly what is going on with our precious little girl!

Time Goes So Slowly…

…when you are waiting to find out if you have cancer again.

I’m anxiously awaiting the biopsy of “Jo” and the days seem agonizingly long. As of today there are 18 more days of waiting until the biopsy and who knows how long after that to hear results.  We *might* know something preliminary that same day – I really hope so.

So in the meantime, my imagination is left to run wild with all the things it could be. Based on my latest thyroid tumor marker labs, a recurrence of that is not likely to be the culprit. That leaves things like an infection, cyst, lipoma, and of course a second primary cancer as possibilities. 

While cancer is probably the lowest possibility on the list, its hard to ignore. Since I’ve had cancer once, I have about a 20% higher chance than the rest of the population of getting a second type.  If you look at studies on my specific type of cancer & its treatment, you find that I have a 30-40% chance of getting a second primary cancer at some point.

To get my mind off things for a while, I’m heading to Michigan to see my new nephew so I know at least the next 6 days will fly by!  Then its back to work in St. Louis for 8 days and then home to Tennessee for Easter weekend before B-Day.

Are There Two of Me?

Cloning.  It’s never been something that I have agreed with…

Until now.

I need a clone. Please, please, pretty please with a cherry on top?

Actually I need more than 1… heck, I even need more than 2!

I need one to be at work for me in TX… one to be in TN to clean the house and buy groceries, another in TN to hang with the fiancé… one in MI to hang with family, another in MI to meet up with friends, another in MI to be a wedding coordinator… so that would be… 6 clones?

And that would leave me… lucky number 7… free to be selfish and just tend to myself. 

All I would need is a day or two where I didn’t have to worry about pleasing anyone or doing anything that I didn’t want to do.  And maybe I would finally have time to do the little things like… oh, I don’t know… get my hair cut or my eyebrows waxed?

Sigh… even a few hours like that sound so heavenly at the moment.

So my New Year’s resolution?  Be a mad scientist and create clone selves that last just 24hrs or so.  Anyone want to fund me?

Well It’s Official…

I have resigned from my management position here effective July 22nd.

There are many reasons behind this decision some of which I am not prepared to discuss just yet.  Some of which I might never discuss on le bloggy blog.

I am not certain where I am going or what I am going to do just yet.  That is such an odd feeling.  I’ve always known where I was going before I went.

Don’t get me wrong, I have ideas floating around… this girl has no shortage of those puppies… but so many of them are in the long range category. I just have to start doing the little things to get the momentum going.  And above all I need to follow my heart and live my dreams.  Life is too short not to.

Stay tuned dear readers… its about to get interesting around here!

Believe with all of your heart that you will do what you were made to do.
-Orison Swett Marden

I’ve Got A Feelin

“June 12th, 2009 – …My doctor was nearly certain - in fact said he would be "very surprised"- if my full pathology came back as anything but benign. 

We were both a little shocked when I went in to have my stitches out a week ago Friday and found that "Bob" had been sent to the Mayo Clinic for a second look. He said he would call me as soon as the reports from Mayo came back...

So that is basically how exactly 2 months after my 30th birthday, I got the phone call telling me I have cancer”

Today marks 2 years since I heard the words “You have cancer…” over that phone line.  It’s a day I will never forget...  A day that changed my life forever.

It seems like a lifetime ago but at the same time I know I’m not at that magical 5 years = cancer free mark yet.  It is probably why I have been dragging my feet to find a new endocrinologist and have my testing done.  I know I need to do that.  I know.  But I’m scared that there will be news I don’t want to hear.  That and Endos are notoriously prima donna like so meeting yet another one isn’t exactly high on my list.  I will make that appointment. I promise.

So how am I celebrating 2 years of survivorship?  I don’t know yet.  I’m thinking of sleeping in, reading a good book, watching a new movie, and heading down to get a Peanut Butter Dream to stick 2 tiny little birthday candles in. 

I’ll light those 2 little candles.  And while blowing them out I will make a little wish for all the dreams I’m holding in my heart.

Because as I said one year ago today…

“Today is a day to celebrate every moment, to appreciate the little things, to stop and smell the roses, to live life to the fullest, to shout it from the rooftops! 

I am here, I am healthy, I am loved, and I have a very long life in front of me.

For today, I am pushing all of that away and am remembering that today is worth celebrating because life is worth celebrating!  Life in all its ups and downs is simply a gift every single day. 

Today Every day is my most precious gift”

How We Gonna Pay Last Year’s Rent?

Ok I know I’m in nowhere near the predicament that the characters in RENT are facing, {eviction} but this whole renting debacle has this song running through my head.

So in an attempt to clear up some of yesterday’s drama, I did a little digging today.

Today it all started with a phone message response from the management company stating that my apartment had been re-rented on April 10th. 

{Insert confusion here}

The persons in office at my old complex had stated it was re-rented right away as in January or February.  Big difference in the refund coming my way between those two timeframes. So my next step was to call the apartment complex directly and get the exact date that my exact unit had been re-rented. 

The story?  Well someone had put a deposit down on my apartment fairly quickly after my move out… and then at last minute pulled out of the deal. {jerk} So my apartment had been “on hold” for this person who then decided they didn’t want it and the complex then had to try to find another renter. {double jerk}  They finally did find another renter who moved in on April 10th not in January or February. {dangit}

I’m still a little peeved at the management company for not informing me of this little fact because I’ve been paying $$ when I should be getting $$.  And I will still be writing a strongly worded letter if the situation is not resolved very quickly.  But for now, I am just very happy that my obligations have been fulfilled and its one less monthly debt to concern me.  And let’s face it, there are many other things I would rather spend that $710 on!

Caught Red Handed

Not sure if it has been mentioned on le blog or not to date but when I moved from MI to TN I had to break my rental agreement.  Said rental agreement stated I had to pay through the end of my lease term or until my apartment was re-rented, whichever came first.

Guess who has been paying the tidy sum of $710 every month since I moved out in addition to my current rental fees?  Moi.

Guess who’s apartment was re-rented “right away – in January or February” {quote from the apartment complex office staff} but who has been paying the $710 every month because the management company did not inform her of the re-rental? Moi.

Ladies and gentlemen of the jury, guess who is owed some big time buckaroonies back in le bank account.  MOI!

I am too tired tonight to compose a lovely “I dislike you very much” mail this evening but you can bet your bippy the aforementioned management company will be getting a piece of my mind tomorrow!

Only Hope

There's a song that's inside of my soul
It's the one that I've tried to write over and over again
I'm awake in the infinite cold
But You sing to me over and over and over again

So I lay my head back down
And I lift my hands
and pray to be only Yours
I pray to be only Yours
I know now you're my only hope

Sing to me the song of the stars
Of Your galaxy dancing and laughing
and laughing again
When it feels like my dreams are so far
Sing to me of the plans that You have for me over again

So I lay my head back down
And I lift my hands and pray
To be only yours
I pray to be only yours
I know now you're my only hope

I give You my destiny
I'm giving You all of me
I want Your symphony
Singing in all that I am
At the top of my lungs I'm giving it back

So I lay my head back down
And I lift my hands and pray
To be only yours
I pray to be only yours
I pray to be only yours
I know now you're my only hope

written by Switchfoot
sung by Mandy Moore in A Walk to Remember

What Are You Waiting For?

It's in my nature that I lack a bit of patience. I don't think that is too big a secret from those who know me best? It is, however, something that I think I'm good at internalizing to a good degree.  It causes sleepless nights, knots in my stomach, and many, many overly melodramatic thoughts in my brain.  I'm super good at playing through the possible outcomes in my head.

I think the one thing that brings the most anxiety is a factor beyond my control... the other person.

Nearly all waiting situations involve a second party do they not? Waiting for your doctors appointment, waiting for a coworkers call, waiting on your friend to reply to your email... you realize very quickly that you can influence but can't control the outcome.

So you wait... and wait... and wait!  And maybe one day soon you will get the answer.

Tell Me This

How is it possible that there are NO local phone numbers available through Google Voice OR Verizon for the Johnson City area?!  They give you “local options” that include places like Kingsport, Elizabethton, Limestone… but how do I know which one isn’t going to be long distance?

The whole point of me changing phone numbers is so I can have a LOCAL number that my staff can call if they need to reach me.  So if I can’t get a number that won’t charge long distance back to my cost center, I might as well stick with my Michigan number right?

UGH!

As far as I can deduce by using the phone book and internet searches, Limestone seems to be truly “Local” where Elizabethton and Kingsport are in question.  Can anyone confirm this?

Out for a Bout

As the boxes are stacking up, so is my anxiety. I will be checking out of the blogosphere for a while to finish up the packing and to spend my last moments with family over the holiday. Plus, my laptop is just another item that needs to be packed! 

So to all of you I say…

Merry Christmas!

And Then He Said Stop

This week went into major fast forward mode starting on Tuesday.  My mind has been racing, my body has been racing.  There is so much to do, so many things to take care of, wrap up or begin.  The list is growing by the moment and certain things are just too much to think about right now and give me total anxiety.  One thing is: I don’t know where I’m going to live yet.  But things are moving in a direction so that I know I will have someplace to live.  I just hate the not knowing thing right now!  Another thing is when am I going to find time to pack in this busy holiday season?  It has to be done, so it will be… I just need to start!

But the main thing giving me anxiety is health related.  I need to find new doctors which doesn’t just mean a PCP or OBGYN or dentist… for me that also means a new Rheumatologist and Endocrinologist and possibly a new Surgeon. It means telling every little detail of the past 2 years all over again.  What if I forget an important piece?  Can I keep my current Endo & Rheumy with my new insurance?  Can I schedule the appointments when I will be able to make the trek home?  And at the last Endo appointment they said at the next appointment [coming up in Feb] we need to schedule my 1 year follow-up scans.  Which means I have to go on the LID again… and go hypo again… this time 700 miles away.  Or will my new insurance pay for Thyrogen?  Will there be any Thyrogen available?  Should I try to get into a new Endo down there to start them out with a bang or should I try to get in with my current Endo before I leave… but then I still wouldn’t have time to schedule the LID, going hypo and my scans… 

It’s just too much to think about right now on top of everything else.  I have too many other things that absolutely have to get done in the next 30 days.  And please, spare me the lectures on the importance of the 1 year scan – I Know – but I also know my TG levels have been undetectable which is a really good signal that my cancer is still gone.

So in the midst of all this too much to do anxiety, I decided to start packing this morning. As I ate my IKEA cinnamon roll, [I managed to squeeze in a trip yesterday to buy me some lovely new curtains for the yet to be named living space] I started to feel that familiar tightening on the left side of my face.  My jaw started feeling stiff, the place where my jawbone curves up below my ear started swelling. [similar to this]  Seriously?!

In the midst of the do I/don’t I in relation to Sjogren’s Syndrome, it sure seems like my symptoms fit the bill.  Symptoms are aggravated by stress and in the last 2 weeks my skin has gotten so dry that it cracks, my hair has been falling out in massive amounts, my hands have hurt so much I could barely  make a fist and well… now my face is blowing up again.

So I’m taking it as a sign that today, I need to just stop.  Meditation, movies, cleaning, writing, scrapbooking… I don’t know what exactly I will do yet but I need to clam my body and mind.  I’m starting with blogging and lots of fluids to jump start my parotid back into action. Hopefully the facial disfigurement is short lived.

BIG News!

I have big… biG… bIG… BIG… HUGE  news to share with you!

I will not be putting up a Christmas Tree this year.

Come on!  Do you think I would have been teasing you for WEEKS just to tell you that?!  But… it is a part of the puzzle… a clue if you will.  Here is another clue…Taken earlier this year and posted earlier by yours truly HERE.  Any guesses on the super big announcement yet? 

How about this hint?

If you guessed that I’m moving, you would be only half-right.  One last really obvious hint:

If you guessed that I’m moving to Tennessee to take a new job…. you are obviously a genius because that is exactly right!

Yes folks you heard that right – I’m moving to Johnson City, Tennessee and starting a new job! [and let’s face it, I’m fixin’ to acquire a southern accent right quick] 

Tennessee… the birthplace of country music, Dollywood, Jack Daniel’s, and the Great Smokey Mountains.  Tennessee… a mere 699.91 miles from home and family.  Tennessee… a whole new adventure waiting for me!

There is so much going through my mind at the moment and a whole heck of a lot of checklists and spreadsheets started.  I start my new job January 3rd. Right after New Year’s.  That means between now and then I have to find a new place to live, find some movers, pack up my life, say goodbye to all my friends and family and… let’s not forget the holidays and the craziness they bring anyway! 

I’m starting to panic that I won’t have time to do it all.  At the same time I am SO excited about starting this new journey!  I’ve been wanting to tell everyone for weeks now – I’ve been interviewing since August – but I hope you can forgive the hinting and understand why I have to keep it under wraps for a while. 

I am officially done with my current job as of December 17th so if any of you are around the week of Christmas, let’s make some plans for lunch, dinner, a movie… whatever!  For now, I plan on leaving the mitten the week of New Year’s and arriving with enough time to get unpacked before the holiday.

Sooo I have to know… was the wait worth the big reveal?

The Doctors Say…

There are no side effects to taking this radioactive pill into my body… apparently they have never taken it themselves. 

I took my scan dose of radiation this morning and they had to give it to me in 4 pills!  They explained they had to give me the pediatric dose pills because they have had trouble getting the adult doses.  They used to get this from Canada but their nuke plant has been down for the last 6mos so they now have to get it from a plant in South Africa… I’m thinking is this stuff that dangerous that we don’t even make it on US soil!?  Apparently, yes.

So I took my pills like a trooper and I swear, even if the pills have no affect on normal people they completely enhance the effects of hypothyroidism.  Since taking them, I've been nauseous, feel extremely weak, fatigued and headachy, and absolutely cannot get warm. 

My hands, nose, and feet are literally like ice cubes and everything else is covered with 2-3 layers of clothing as well as 2 blankets!  I know I need to try to eat something solid but I barely got down a small bottle of organic fruit smoothie (yay for getting 3.75 servings of fruit/veg!) and frankly, being on the LID leaves little appetizing options that don’t take long to prep.  Right now my best options are air popped popcorn with no butter and a small amount of non-iodized salt or organic unsalted brown rice cakes with natural, unsalted peanut butter and banana slices.  Yummy. I’m thinking I should go with the rice cakes because the PB would give me some protein and the ‘nana would get me to almost 5 fruit/veg servings for the day.

Anyway, trying to muster up the strength to make some food and pack for my isolation location.  I’ve pretty much slept all day and will most likely eat and then sleep again for a while so maybe I can pack during the commercials of Glee, Mercy, Toddlers & Tiaras… and whatever other shows I'm DVR-ing tonight ;o)

A Little Sleep Please?

The past couple days have been pretty bad for me… I find that I'm not feeling very cheery at all and am welcoming the cloudy skies (hoping for some storms soon!) because they match my mood perfectly. 

I am in a state of extreme fatigue, as most of you have probably gathered, but have been finding it increasingly hard to sleep. 

This is what my nights are like: finally fall asleep between midnight and 1am, wake up between 3-4am and stay awake for about an hour or so, fall asleep again between 4-5am, wake up between 7-8am and then I give up on trying to go back to sleep.  I know I'm not getting enough sleep, sometimes I am able to take a nap during the day which helps some but is still only an hour or so at a time.  Well after a few days of sleeping like this, then I seem to crash and can do nothing but sleep.  Its getting ridiculous!

At some point I thought I had read something about insomnia being linked to a hypothyroid state but of course now can’t find it… I do have references that state when you are hypothyroid you are unable to reach “stage 4” sleep, the deepest, most restful level of sleep which only contributes to the fatigue.  Could explain why I haven’t dreamt in years except on rare occasions?

I’ve also been in pain pretty much constantly for the past couple days.  I try to ignore it all day but last night it was too much so I took some motrin and just curled up into a ball.  This morning is pretty much the same as last night.  I feel like I have arthritis or something and feel like jumping out of my skin. Its superfun.

I can’t wait until this is all over!

Gettin’ Dosed!

The surgeon’s office called this morning to tell me that my TSH was 35.67 and that my Nuclear Med stuff has all been scheduled! I will be getting my tracer (scan) dose of RAI on Tuesday and have my WBS, Consult, & Ablation dose RAI on Wednesday! Stop the bus – WHAT?! I’m not ready!!!

Everything I had heard said that it was hard to get into Nuc Med so expect at least a week lead time – guess that isn’t so at SH! Needless to say, I still have to figure out where I'm going to go for isolation, I haven’t been on the LID, and I have a wedding out-of-town to go to this weekend so I feel like there is no time to prepare or start cleansing my body of iodine! I have to believe that this is His timing and not mine… and that everything is going according to His plan…

So here is the timeline:

• Tuesday 22nd 6:45am (about 1/2hr-1hr) – head to the hospital, get my tracer dose of RAI, go home.
• Wednesday 23rd 6:45am (ALL DAY) – head to the hospital, WBS at 7am (2hrs), consult with Nuclear Medicine Dr. to discuss scan results and RAI dosing at 1pm, sometime in the afternoon receive my ablation dose of RAI.
• Wednesday 23rd – Tuesday 29th – ISOLATION
• Wednesday 30th (??) – Post-Ablation WBS – this one hasn’t been scheduled yet.

After this is all done, I can start back on the thyroid hormone meds and start bringing myself out of this extreme hypothyroid state (expecting TSH in the 60-80’s by RAI time). I expect for this to take about a week before I feel normal-ish again.

So I'm currently a bit stressed. Being gone this weekend for the wedding is making things a bit more stressful too. I have a lot to do & prep before Tuesday but I'm sure that everything will work out.

At least my hair will stop falling out sooner, right? Its been getting pretty thin so I was starting to worry!