Time to Organize the Holiday Socks

Happy holidays blog friends! No matter where you are or what you celebrate this month, I hope you were able to enjoy some love and laughter with your family and friends.

Speaking of exciting celebrations, this was a pretty fantastic holiday gift...

http://www.sarahkayhoffman.com/2012/12/21/why-lydia-buschenfeldt-is-gutsy-never-giving-up/

In any event, following a lovely needle-filled week at the Mayo Clinic, I opted out of a second week of medical mania in favor of a lovely holiday spent with family. The semi-unfortunate part of that decision is that I do need to return to balmy Minnesota in January...but the ability to spend this holiday week with my family and friends has been just the pick-me-up that I needed. Let's be honest, I just didn't want to miss out on the holiday feast. Shockingly, not one relative asked to share my egg whites and sweet potato Christmas dinner...can you believe it?!

I had planned on writing a blog post today full of results and plans moving forward...but we aren't there yet, and that's ok. The most recent trip to Mayo was only a week, but was likely the busiest trip yet. Most days I arrived at the Clinic around 7:00 and left around 5:00, and nearly every hour was spent in appointments and tests. Exhausting? Absolutely, but also satisfying to know that my time there was well-spent and efficient. When I return in January, I will see neurology, allergy and internal medicine again, along with neuro-opthamology (Didn't know this existed? Fear not...you aren't alone).

In addition to the obvious remnants of the darling super-virus, my doctors are working on some theories about what else may be going on in my body that is halting the healing process (ya know, other than the obvious daily green juice and frozen yogurt dance party). There are theories of Graves' Ophthalmopathy, Myasthenia Gravis, Mast-Cell Disease and other such fantastic holiday gifts, but I will hold off on explanations(boring you to tears?) until things are confirmed/denied.

I think the GI nurses are most anxious about my upcoming return visit with neurology. When I showed up for my feeding tube change wearing only a hospital gown and fabulous candy corn socks, they all of a sudden started speaking to me like I was 2 and asking me questions about the date and what holiday was coming soon.

What? You don't celebrate the amazingness of candy corn 365 days a year? Weird.

Just your typical week in Minnesota...

Well friends, I’ve been here in my “home away from home” since Sunday night and you can all rest assured that I am up to my usual shenanigans.

Ya know, 5 appointments have turned into 12 and a blizzard showed up last night.

Typical.

Following an hour-long appointment with my internist and 2 rounds of blood work on Monday, I enjoyed a lovely little anesthesia-induced nap on Tuesday during my feeding tube change…which turned out to be fortuitous rest for Wednesday’s marathon.

I was supposed to just meet with the neurologist yesterday, but during the appointment he scheduled me for 3 additional appointments and 1 additional test. These all magically appeared on my schedule as occurring on December 24^th and January 4^th. Funny, because my tail feathers plan on being firmly planted on my outgoing jet this Saturday.

The Mayo Clinic has this fabulous system of being a “checker.” It’s basically the same thing as flying standby in an airport. You show up, beg your sob story, waggle your very best puppy dog eyes…and hope for the best. You stare into your tiny pink pager, willing it via telepathic communication to start buzzing and reveal that someone has mercifully canceled his/her appointment (or that the cookies you slid across the desk really did the trick…shhhh).

Yesterday, I managed to get into 2 appointments and 1 procedure that are supposed to be for next week. Score!

I met with the neurologist, swallowing specialist and speech pathologist, did a repeat swallowing study (they really need to invent barium holiday cookies) and got more blood drawn. Just another day on the red carpet?

I could bore you to tears with all of the minute details, but the outcome of all of the appointments was pretty much the same. Everyone sees what I am talking about in terms of decline of fine-motor control, speech distortion, inability to project my voice, sing or swallow solid food, and so on…but no one can figure out why.

To be honest, I really wasn’t at all surprised. The power of an out-of-control virus is an unknown entity and there may be many more unexplained symptoms in my future. My goal of this trip to Mayo is to figure out how to navigate moving forward. How do I know when to call the doctor or when to just know that the “viral carnage” has found a new location? I’m not interested in taking fistfuls of pills every day and strongly believe in the body’s ability to heal…I’m just looking for some guidance on how to facilitate that process. Besides the obvious increase in frozen yogurt consumption, because clearly that is the necessary elixir of life. Duh.

Side note: The frozen yogurt shop here has mint for the holidays. Best. Discovery. Ever.

My neurologist wants to run a few more tests over the next few days (and hopefully not  on January 4^th) and assuming those all come back negative, we will move forward. Today I will hang out in a tiny tube (MRI) for a few hours and fingers/toes/all body parts crossed, I will meet with the neuro-ophthalmologist before I leave on Saturday as well. Perhaps I need to start baking…who can resist warm cookies?

Fear not though, the excitement is not over. Tomorrow morning, I will meet with my immunologist…who gets the lucky job of figuring out why I still break out in hives and sneeze a minimum of 300 times daily.

Obvious answer? Forget more cowbell, we need more fro yo. 

Learning to take the plunge

I get asked a lot about my “safe” foods. In the world of food allergies and digestive disorders, safe foods are a very common topic. In short, these are the foods that people can safely eat without having to worry about allergic reactions and/or digestive distress. Many people smartly waltz around with a nice list of safe foods tucked away in their wallets and they casually hand the list over when ordering food at a restaurant. However, for me personally, the term “safe foods” just makes me laugh.

It makes me laugh because I have a grand total of two “safe foods.”

Egg Whites

Rice Chex

Bust out the Michelin Stars baby, because those make one heck of a gastronomic paradise. 

Eat your heart out Bon Appetit.

So obviously rice chex and egg whites are not the only two things I eat, but they are the only two things that I can absolutely 100% guarantee will not cause any unwanted symptoms. So does that mean that every other food on earth causes symptoms? Sometimes yes, but often no. It means that I’m never quite sure what reaction I will get from any other food and I have to be prepared for anything and everything.

Which is, ya know, fantastic for trying to plan anything.

It is no secret that I have been known to list “using organizational supplies” as a hobby and I’m not ashamed to admit that I actually enjoy organizing the files on my flash drive (ok…maybe I’m a little ashamed…). I have lists for my lists and keep my highlighters in color order in their pack. In short, I like structure and I like organization.

Side note – You could blame my parents for my intense proclivity towards post-it notes and highlighters. Growing up we had a weekly “calendar night,” which occurred every Sunday night, despite the giant protests from my brother and me. Don’t show up to the table without your planner, you will be sent away.

Hmm…the apple did indeed fall from a tree I suppose.

So what do you do when you only have two “safe foods” and you are the type of person who highlights your daily schedule with 4 different colors?

The answer is plain, friends. You get over it.

You take a deep breath and you take a risk. Over and over again.

I may never really know why my body reacts the way it does, nor may I ever truly understand exactly what happened with that virus back in 2010, but that’s ok.

It really is.

As humans, we like to categorize everything in our lives as good or bad, safe or unsafe, okay or not okay, but I am learning that pushing each and every facet of my life into a compartment doesn’t work for me. In fact, I find it exhausting. Life is going to be life regardless of whether I label it as good or bad. In fact, what happens if I look at every new challenge as "perfect?"

I’m not saying this is an easy task. It is hard work and I need to remind myself constantly (cue: gold star post-it, duh). Yes, I spend a giant portion of my time dealing with symptoms that I wouldn’t necessarily place on my Amazon wish list, but I’m alive, I am loved and I have a whole heck of a lot to place on my gratitude list.

Forget walking around on eggshells with the "safe foods," let’s break out the boots and head for the bubble wrap.

Home for the holidays...?

Forget nutrition, I think it is time that I run for mayor.

Or get a Minnesota driver's license.

Or have a building named after me!

Or maybe a frozen yogurt flavor?? Oooooo yes.

You see, by the end of this year, I will have spent at least one third of 2012 in Minnesota. That makes me a resident, right?

Yes. Minnesota. My home away from home.

So one would think, based on the last two years, that there is not a single organ/system in my body that has not been studied, tested, poked and prodded. In fact, so many of them have been tested, re-tested and re-re-tested that you would think it all evened out in the end.

Nope.

Wrong.

A few weeks ago, during one of my speech appointments, my wonderful SLP gave me "the look."

Ya know, the "I reeeeeeally hate to ask this, but we need to run just ooooone more test. I promise this is the last one" look.

You'd think I'd know by now that when "the look" comes out, I should run swiftly in the other direction. In fact, forget run, I should go for a full out sprint. Insanity is, after all, doing the same thing over and over again and expecting different results.

Needless to say, I am not Einstein.

My SLP explained that all of the swallowing studies that I had already done showed still images of my esophagus, but they really didn't provide enough information for her and my doctors. What they really needed was a video.

Or they just really wanted a video of a giant chewing skeleton to project on the side of their haunted houses for Halloween. Also possible.

A few days later, I headed to the hospital for another swallowing study, this time with a video. By now, I certainly have the drill down pat - swallow the fizzy tablets, bloat up like a walrus, swallow a disgusting amount of barium products while standing on an X ray table and "enjoy" albino insides for the rest of the week. As instructed, I brought some props - rice chex, bread and crackers, and the radiologist dipped them all in barium so they could watch me swallow.

Side note: When the radiologist promises you barium marshmallow fluff for your study, it is neither made of marshmallow, nor is it fluffy. In fact, it comes out of a toothpaste tube and in no way bears any resemblance to my elementary school fluffer-nutter sandwiches. Now you know.

After the test, I asked the hospital SLP and radiologist if they had any thoughts and they invited me to stand with them while they reviewed the video. I know, I know, there are serious perks to celebrity status!

SLP: "So when did you have a stroke?"

"Um...I haven't had a stroke."

SLP: "Oh...are you at risk for a stroke?"

"Not that I know of?"

SLP: "Ok so you must have had a brain tumor. When was that?"

"Um...no...?"

Right. So apparently my dysphasia (difficulty swallowing) is being caused by a neurological malfunction and was definitely not caused by my thyroid surgery. The vocal chord paralysis and dysphasia are now definitively two separate issues. And as crazy as this is to believe, none of the umpteen-million doctors I have seen have thought about my noggin and even crazier, in the umpteen-zillion-million tests I have had, none have included an MRI of my brain.

I looked left. I looked right. Come on, I'm being Punk'd right?

No Ashton Kutcher.

Personally, I think my doctors at Mayo have caught wind of my tendency to bake a ridiculous number of tasty treats during the month of December, and they want in on the action. I mean, who can blame them? I know I can't make reasonable decisions with images of oatmeal scotchies, chocolate crinkles and gingerbread men dancing through my mind. Can you?

So the week before Christmas, I will be heading out to Rochester to deliver cookies, greet my fan club, sample new flavors of frozen yogurt...oh and hang out with neurology and get a new feeding tube.

Wait, those aren't some of your holiday traditions?

Weird.

Accepting a New Identity

I don’t think it is a big secret that a lot has changed in my life over the last two years. As this journey has progressed, there have been tremendous gains and life lessons that I feel incredibly blessed to have learned at a young age-lessons that have grounded me and shed light on what is important in a way that no other life experience can. But there have been tremendous losses too, and as much as it is difficult for me to acknowledge loss, I am learning that it is a necessary part of moving forward.

I don’t want to tell you that I have completely lost my identity, because that would imply that the core of what defines me as a person has changed. I have, however, lost some essential elements of what I believe helped to shape my identity in the first place. Two years ago I could have told you that I was, among other things, a teacher, a runner and a singer. Today I am none of those things, and even just putting those words in print takes a deep breath (and perhaps a piece or two of pumpkin bread…).

I think one of the things that makes these losses cut so deep, is that none of them came with any sense of closure. All of a sudden, I couldn’t run anymore and just as suddenly, a 1% chance of vocal chord paralysis became a harsh reality. When I walked out of school a week before Thanksgiving last year, I really and truly believed that I would be back in a few days. I had written detailed plans for the substitute, explained to the students that I was having a little procedure on my stomach and I told them that I would be back on Monday. It has been nearly a year, and many Mondays have passed without my return.

Hindsight can be such a jerk. Yes, if I think about it now and analyze where I was a year ago, I can easily see that I was functioning purely on adrenaline, in a body that was dehydrated and malnourished well beyond the realm where any surgery would be easy. It doesn’t take rocket science to see how cutting a hole in my stomach and jamming two feet of plastic into my intestines would jar things up a bit. Thank you, Captain Obvious.

But to be honest, at the time Captain Obvious was nowhere to be found. When you are in that body, trying to live your normal life and juggle your doctors appointments while thinking about the needs of 28 fourth graders…things that seem so obvious now just don’t cross your mind. Nearly a year later, it still pains me to know that I unknowingly lied to my students. I never, in a million years, thought I would be here, writing this blog nearly a year later, as a person who has been labeled as disabled and hasn't been in a classroom since 2011.

So yes. There have been losses and I am still, as my father says, “peeling the onion." But, I have also made giant improvements in the last year. I am, without a doubt, infinitely healthier in mind, body and spirit. I am learning to adjust to my new normal and not think of my life as being paused, but instead as taking a new path. This path has not been the yellow brick road that leads me to the wizard (I do however spend a good amount of time in sparkly shoes). It is a path that has taken many twists and turns and one that has ultimately led me to the heartbreaking conclusion that it may be time to move on in my career.

I feel a bit like a broken puzzle piece, one that after years of over-use and a little adversity, no longer fits properly back into the completed puzzle. The puzzle piece looks like it should fit right in from far away, but when push comes to shove, it just doesn’t snap into place. I have attacked every new obstacle in my path with the mindset that if I can overcome it, I can return to teaching. But that race of hurdles becomes more and more difficult when you realize that you aren't the same puzzle piece that you were two years ago.

I’m not ready to say that I’m not a teacher and I haven’t given up hope that things may suddenly return just as swiftly as they left. However, right now there are three big obstacles and an entire score of sub-obstacles standing in my way of being the teacher I want to be. Even if you momentarily ignore the fact that I have zero immune system or that I still get at least a third of my calories from a tube, I still get an FUO (that’s fever of unknown origin…not flying unidentified object) at least 4 days a week, I can’t talk for more than an hour at a time and most days I...er...let's just say I spend more time in the bathroom than I spend out of it. These three things alone are not exactly conducive to providing a quality education and no one knows how long they may stick around.

So moral of this extraordinarily long-winded blog post is to tell you that today I went back to school-not as a teacher, but as a student. I’m starting a year-long program through SUNY’s Institute for Integrative Nutrition to become a certified health counselor. I will be certified through the AADP (American Association of Drugless Practitioners) to counsel children and adults in any aspect of health and wellness, but I’d like to eventually focus on people who have had life-changing diagnoses, surgeries and/or allergies. I still have the piece of paper from the day I was diagnosed with gastroparesis that told me to eat only chicken broth, ensure, carnation instant breakfast and mashed potatoes. Yep, that's it. I mean, slap my face on a Wheaties box, because clearly that diet would make me the picture of health…

I managed to pull myself out of that deep level of malnutrition and failing health, but it was the hardest thing I have ever done. If I have the opportunity to pay it forward and make that transition to health and happiness easier for someone else, then I simply can’t pass it up. I think, to truly heal, I need to allow all that I have learned throughout this journey to shine through the losses.

It is quite an odd juxtaposition, to say the least.

I am thrilled to start this new journey into the world of nutrition and my heart flutters to think about the possibility of feeling useful and needed again. At the same time, I am absolutely, positively heartbroken to consider the possibility of leaving behind a career that I deeply love and desperately miss.

But, for now, I'm taking a deep breath and stepping over the mountain of what-ifs and maybes.

For now, my sparkly shoes and I are drinking our green veggie juice and plunging headfirst down a new path, with open eyes and a full heart, ready to see what lies ahead.

Keeping the Medical World in Business

My friends, my apologies! I know that you must be anxiously chomping at the bit since I left you hanging with my last post. Likely you are experiencing some serious symptoms of SCA, skin-chunk-anxiety that is. You may be tossing and turning, you may be biting your fingernails but most likely you are pounding massive amounts of candy corn. It's ok, it happens.

So my chunk of skin and I made it safely across town to the pathology lab at the hospital. Upon arrival, I went to registration, as instructed.

"Hi, can you please direct me towards pathology?"
[Insert snarky tone] "Ma'am, why do YOU need to go to pathology, it's not for patients."
"I understand, but I have a skin sample to drop off."
"Well just where is this skin sample then?"
[Reach into purse, calmly hold up bio hazard bag containing chunk of skin]
...
No words were spoken. Just a finger pointed to the left.

Once my skin was dropped off, I had to wait two weeks for results. You'd think this must have been a really long and stressful time of twiddling my waiting fingers. However, I take my role as "primary contributor to the medical world" very seriously, and I managed to squeeze 11 other appointments in between skin chunk biopsy and skin chunk results. I know, I know...shoe-in for patient of the year!

One of my many appointments was my first meeting with the speech language pathologist to work on my vocal chords. The SLP was wonderful and obviously very knowledgeable. She spent most of the hour hearing me make an assortment of ridiculous noises and asking me how things felt-don't worry, the track will be for sale on itunes shortly, search under "mostly hairless strangled animal." Turns out I wasn't giving my intuition and years of voice lessons enough credit when I awkwardly laughed and said, "I'm sure it isn't the case, but I just really feel like I'm being strangled all the time."

"No you are correct, you are being strangled."

Uh. Um. Right?

So post thyroidectomy, my nerves had a quarter-life crisis and decided to do something rash. Instead of buying a fire engine red convertible, my nerves decided to step it up a notch and attach themselves to different muscles. They fire when they should...but instead of speaking, singing, swallowing solid foods or projecting my voice, I strangle myself.

Eat your heart out "America's Got Talent."

In other news, a few days ago I received the results of my skin biopsy, stating that I had Fifths Disease.

Right. The &*%$#$ virus that caused this whole blog in the first place. The virus that lives no longer than 6 weeks at the most. The virus that I had almost 2 years ago. The virus that you can only get once. Right. Glad that's all cleared up.

Needless to say, some follow-up blood work was done by my extraordinarily confused doctor and I'm awaiting results.

Now the possibility that I have seronegative syndrome has come up several times in the last few years, and as a result of my skin biopsy and some blood work, it came up again. Seronegative means that for some unknown reason your blood does not produce the antibodies that show up when tested for various autoimmune diseases. So basically, you will always test negative, even if you have a disease that needs to be treated. Ya know, just to make sure you are really paying attention. That blood, a rebel without a cause!

The latest theory is that I have mastocytosis. It goes without saying that mastocytosis is an orphan disease, meaning it affects fewer than 200,000 people world wide. So ya know, that part fits.

Mastocytosis is a condition where you have too many mast cells in your body. Mast cells help your immune system defend your organs from disease by releasing chemicals, such as histamines, to alert you to a problem. As all dutiful followers of Claritin/Zyrtec/Allegra know, anti-histamines prevent you from having allergic reactions. Therefore when you have too many mast cells, you have a ridiculous amount of histamine in your body and you react adversely to everything.

And when I say everything, I do mean everything. The steri-strip used to close my skin biopsy site? Yea, had to dig that sucker out when my skin swelled up and over the strip overnight. The needle site used to take my blood? I could audition for "Attack of the Giant Mosquito." Oh and Mederma, when you labeled your scar therapy as "hypoallergenic," you clearly hadn't met me.

You get the idea.

So I've started a 3 week trial of medicine that suppresses the mast cells in my body and if I do, in fact, have mastocytosis, the medicine will help to decrease the symptoms. Luckily, "hurry up and wait" is my specialty.

Just to keep me on my toes, the medicine has to be taken 30 minutes before meals, and has to be at least an hour apart from thyroid and reflux medicine, which have to be 4 hours from each other and taken on an empty stomach. Always a good sign when the pharmacist pauses, makes a grimace and starts biting her nail when you ask her about timing your medications. So, I take my thyroid medicine, wait an hour, take the mastocytosis medicine, wait a half hour, and then I can eat breakfast. Then I wait an hour or so and repeat the entire process before my next meal.

So, anyone up for lunch today?

Just give me about two hours, I'll be there.

Hanging out with my good pal Murphy

Let me cut it to you straight, I'm thinking of changing my name. To Murphy.

Perhaps Murph E. Slaw?

Has a nice ring to it, and is considerably easier to spell than my current surname.

Worth pondering.

If you haven't already picked up on this, I have a certain, well... proclivity shall we say, towards murphy's law situations. As I mentioned in my last post (yes, the one where I bored you all to tears with my musical resume), I've lost some function in my throat and vocal chords. Over the last week or so, I've gone through extensive testing to try and pinpoint where specifically the problem is located.

Last week, I started with vocal testing. In a nutshell, the doctor stuck a giant black tube with a camera down my nose and throat and then watched me make a fool out of myself...er...watched me read and sing. I thought it was bad enough when the doctor handed me a laminated passage and asked me to read it- first normally and then while attempting to project my voice. But then my doctor asked me to sing...and she wanted me to sing as loudly as possible, so she could record it. So, not only did I give the world's worst rendition of "Amazing Grace," but it is now recorded for all of time. After my studio recording session, I felt it necessary to explain to the doctor and technician that I normally can actually carry a tune. They both smiled politely...and then glanced at each other with that "Suuuuure" look. Stupendous. I'm just waiting for my youtube debut.

Fast forward a few days to my esophagram. The point of an esophagram is to see if there are any abnormal masses in your esophagus, to locate any unusual narrowing and to watch your muscles and nerves fire as you swallow. So you hang out in an xray machine, in hospital gown fashion of course, and swallow a ridiculous amount of barium while the radiologist snaps pictures. Just to spice it up, it took 2 full 8-ounce glasses of barium, 2 barium tablets, 3 barium dipped marshmallows and a half a cup of barium dipped rice chex before the radiologist was satisfied with the pictures. 

My stomach was thrilled, let me assure you.

So the verdict is that I have neuro-muscular damage of the upper esophagus. In non-doctor speak...I have nerve damage. There was literally a 1% chance of this happening from my thyroid surgery. Just call me Murphy.

The nerve damage prevents me from speaking for a long amount of time, projecting my voice, singing and swallowing solid food without difficulty. Next week I will start voice therapy, on the off chance it helps...my doctors aren't optimistic, but it is certainly worth a try. In a few months, I will have more invasive testing to be able to pinpoint the exact nerves that are damaged and in August (a year from surgery) I will have the option of looking into microlaryngeal surgery...which clearly also comes with its own set of risks and scars.

To be honest, it is way too much for me to process right now. So I'm coping the way I cope best.

I'm laughing. A lot.

I mean, COME ON!

I can see the headlines now: 

"Woman tries to start eating again and loses the ability to swallow"

"Teacher works hard to return from disability and loses the ability to talk"

"Former singer chosen for the role of Strangled Cat in upcoming Halloween Film"

Could it be? Finally my chance for an Oscar??

To further my absolutely stellar track record for the week, today I paid a visit to an allergist that my GI has been begging me to see. According to his website, he specializes in the "unique and bizarre."

Ha.

The poor nurse practitioner was sent in to meet with me first. She asked for my medical records, I handed her my 3-inch binder, and she decided to take a seat. After I spoke with her for awhile, she left to go speak with the doctor. We've all been in doctors' offices...the walls are rarely very thick and you can hear a lot...especially when the doctor has a deep, baritone voice. For the next ten minutes, I heard a muffled female voice, followed by...

-"Really?"

-"But what about...Oh"

-"She has already been tested for that? Are you sure"

-"No! That can't be right!"

You get the idea.

At one point, someone came bursting into the room, looked at me for 10 seconds, and then closed the door and walked out. No words spoken.

Yep. I'm real. I promise.

In fact, the doctor and nurse practitioner liked me so much that I get to go back tomorrow! Today I gave them 7 vials of my blood and tomorrow, they would like a chunk of my skin.

Yes. A chunk of my skin.

Since I'm still breaking out in a daily rash, despite the complete removal of all things yellow dye, the doctor would like to biopsy one of my hives. But, ya know, since this is pretty unusual, they don't have the equipment to get results in the office...so I will need to transfer my sample to the lab after my appointment.

Roughly translated, I will drive across Fairfax with a chunk of my skin in a lunchbox. Normal.

In other news, the doctor suggested that I try and get a hive in an unusual spot tonight, because the biopsy will leave a scar.

Now if only I could locate my copy of "Getting Hives for Dummies"...

My Heart will be Blessed with the Sound of Music... and I'll Sing Once More?

So, I like to sing.

Actually, I’ve probably been singing longer than I’ve been talking. True story. Just ask my brother, who had the extreme good fortune of sitting next to me in the rear-facing seat of the Oldsmobile station wagon as I belted out Wee Sing America. My goodness, those goober peas were certainly delicious.

Cassette tape sing-alongs and shower arias aside, I have been involved with an organized choir since I was in the fourth grade, where I proudly wore my bright, red felt vest as an extremely devoted member of the Penn Wynne Singers. So devoted was I that during one of our concerts, a girl in the back row tossed her cookies…and I kept singing, albeit while holding my nose. I’m surprised Carnegie Hall didn’t call me for a booking right then and there.

In fact, now that I think about it, a gigantic portion of my life thus far, has been spent in song.

I started taking music classes when I was 3 and knew most of the basics of reading music by the time I was 5. I started playing the piano in 2^nd grade, the viola in 4th and when I got to middle school, I added the hand bell choir to my instrumental repertoire. Throughout all of those years, I was singing: at church, at school, at camp, in the shower…in my brother’s ears…always singing.

Following my choral debut in the Penn Wynne Singers, I sang in the 6^th grade chorus and was giddily promoted to the advanced choir for 7^th and 8^th grade. When I entered high school, I was a soprano in the bizarrely named “Green Eggs and Jam” and later sang with the all-female a cappella group, Madrigals. In college, I joined my brother in the co-ed a cappella group, Symfonics, which I later directed. I’ve been singing in (and sometimes directing) the senior choir at camp since the age of 12. I am now a proud soprano in the Vienna Choral Society and I delight in returning to my church choir at home in Philadelphia for the holidays.

I think I can also go out on a limb here and title my ipod as the most random collection of every different genre of music known to man. I rock out to Aerosmith, study to Vivaldi, groove to the Beatles, passionately sing along to Disney, twang to Carrie Underwood and delight in a fabulous rendition of Panis Angelicus.

But, I digress.

The point of this post is not to impress you or alternately bore you to tears with my musical resume. Make no mistake, musically-speaking I am nothing special. But what is special is the fact that I have been given the true gift of spending most of my life in song.

I am somewhat ashamed to admit that up until now, I took this gift for granted.

You see, following my thyroid surgery, I unexpectedly lost the ability to speak for long periods of time, project my voice, easily swallow solid foods… and sing. 

Last week, a terrifyingly long black tube was snaked down my nose and into my throat to reveal that my right vocal chord is somewhat delayed and doesn’t quite move as it should. My doctor, however, is not convinced the delay is the cause of my problems and has, of course, scheduled me for a round of what always proves to be, extra special testing. This week I will do an hour of vocal chord testing and next week I will go in for an esophagram to try and locate any abnormal narrowing in my esophagus.

Fear not, my doctor assures me that the problem is not being caused by any abnormal growths or tumors…which is excellent, seeing as I hadn’t even pondered that as an option. Always nice to simultaneously add and subtract possible causes of vocal chord paralysis…

It could be that my body just needs more time to heal. There was only a 1% chance of vocal chord paralysis from the surgery and that may be a percentage that even I can work with. I’ve had two major surgeries in close proximity on my neck within 6 months. I think I can go ahead and make the case that spending over a year with a less-than-stellar nutritional status, probably didn’t help anything and I’ve undergone anesthesia 11 times in the last year…which is generally left off of the top ten healthiest lifestyle habits.

So the case could certainly be made that my body just needs more time.

But, it is still pretty weird. I open my mouth, expecting to hear the same sound that has come out of if for 29 years, but it doesn’t come. In fact, I’m not sure what is more startling-the fact that I can’t sing, or the fact that my attempt to sing strongly resembles a strangled cat.

Just in time for the Halloween haunted house? A spook-tacular singing sensation?

Perhaps I need to look into the side effects of candy corn deprivation...

Not coal tar! Anything but coal tar!

I like to think that I have a decent amount of self-control. I rarely over-indulge, I place a lot of value in my nutrition and I avoid excessive sources of sugar. 

I’d like to tell you that there are no exceptions.

However.

I can’t.

You see, there is in fact, one giant exception.

Now I know what you are thinking-must be something fancy and indulgent. Something expensive, difficult to find and saved only for very important special occasions.

Ya know, filet mignon, truffle oil, champagne or maybe even godiva chocolate truffles!

Nope.

It’s candy corn.

But not just any candy corn. It HAS to be Brach’s candy corn and in the interest of full disclosure, I prefer the autumn mix. Yes, even the giant pumpkin explosions of pure sugar.

I wait all year for candy corn season. Even though holiday food is often out in the stores months before the designated holiday, I make myself wait. I spend late August and September salivating in anticipation for October. On the first glorious day of October, I sprint to the closest source of candy corn and buy the biggest bag I can find. I spend the month enjoying each delicious bite of soft, sugary honey and on the final day of the month I finish whatever remains of my candy corn stash. On November 1^st, all candy corn must be out of the house (read: in my stomach) and I restart the year-long countdown for next October.

Any and all self-control that I have goes out the window when it comes to candy corn.

It is my kryptonite.

But friends, I have devastating news.

I know this may come as a shock to you, but candy corn is not an all-natural product.

I know, I know, take a moment to compose yourself, because I’m about to rock your world even more.

[deep breath]

Candy corn has artificial coloring.

Can you believe it???

More specifically, candy corn has yellow dye #6. 

Yes, the one that I’m now allergic to, along with yellow #10.

There may or may not have been some serious throat lumpage and major eye-tearing at the grocery store this weekend. [Hangs head in shame]

Don't think I haven't done extensive research on candy corn alternatives, post devastating discovery. I've investigated vegan candy corn (no gelatin, still yellow dye). I've combed through the Brach's website and considered the Easter version, complete with pink, purple and spring green candy corn (Negative. Still yellow 6 with the addition of blue 1).

In fact, in the last week I’ve gotten a true education on yellow dyes and how they are in EVERYTHING. Ok, maybe not everything, but pretty darn close. I’ve also learned that yellow dye is actually coal tar. Yep, coal tar. You’d think this would deter me from continuing to crave candy corn.

Nope. Still want it. Mmmmm coal tar?

Yellow dye was also discovered in my shampoo, conditioner, Tylenol, toothpaste, vitamins, medications, crackers, gummy bears(shocker), chicken broth, canned butternut squash, hand soap, lotion, yadda yadda yadda. It's also a very good thing that I don't wear a lot of makeup and now I finally understand why wearing lipstick makes me want to scratch my face off.

And just in case I was thinking I may be able to someday reintroduce bread crumbs, cake mix, icing, cake decorations, jimmies, snack chips, certain breads and cheeses, soups, marinades, ice cream, marmalade, custard, lemon curd, food coloring, etc. I can think again. 

So yes, I am aware that a body as hypersensitive as mine could probably benefit from going cold turkey on all artificial additives. Let's be honest, most of the things I eat now are either raw or very minimally processed, which is something I'm proud of and strongly believe in for healing and overall health. So yes, there is a part of me that is very much okay with having a reason to completely eliminate  any and all processed products, both of the food and health care variety.

But like a bear to honey, I need my candy corn. 

So my friends, I have an assignment for you. I need you to eat some candy corn and vicariously through you, I will enjoy each bite of sugary honey goodness. Yes, this means even the pumpkins.

I'll even give you permission to start before October 1st!

Come on, be a pal!

After all, it's only coal tar.

Benching cancer

Break out the almond milk! Unscrew the baby food jars! Juice the spinach! 

I am cancer free!

But wait, why are we celebrating? I thought she already knew she was cancer free?

Fear not, you aren't losing it.

After my thyroidectomy, the surgeon told me about the cancer and indicated that he had removed all traces in my thyroid. It wasn't until I returned home and had my one-week post surgery appointment with my endocrinologist that he gently explained that I wasn't entirely off the hook. Thyroid cancer affects the thyroid, parathyroids and lymph nodes, so I had really only eliminated one of the options. In addition, I was also told that the best surgeon can only remove 98% of your thyroid and all it takes is one cell to keep the cancer going.

Oh.

Thyroid hormones have an extremely long half life, which, in a nutshell, means that they stay in your body for a long time. Due to this lengthy half life, I had to wait a month post-surgery before we could do any tests to see if I was still carrying cancer of any form. If we did the test too close to surgery, it would definitely still detect cancer being present, even if it was no longer there. Unlike many other forms of cancer, thyroid cancer can be detected by elevated levels of thyroglobulin, which is carried in your blood. This blood test was done a week ago and my doctor just received the results. Somehow I still have hair and fingernails?

I had (past tense! Woohoo!) papillary carcinoma of the thyroid, which is one of four types of thyroid cancer. Obviously cancer in any shape or form is not ideal, but if you have to pick one, I recommend "selecting" this slow growing and very treatable type.

The only downsides to papillary carcinoma (besides the obvious terrifying weirdness that you are growing something that could kill you) are that it tends to come back and if untreated it tends to go to the lungs and bones. So my endocrinologist and I will be on hyper alert for...well...the rest of my life. Weird. Even now, my thyroglobulin levels are not zero (which is obviously ideal)  but they aren't high enough to warrant radiation and seeing how my body takes FOREVER to accomplish anything, I may just need more time for the numbers to go down.

The numbers may also still be elevated because, as it turns out, I am allergic to the dyes used by pharmaceutical companies that distribute thyroid medicine. I was, therefore, likely not absorbing much synthetic thyroid hormone initially because I was allergic to the pills. Oops. To quote my endocrinologist, "Allergies to these dyes are very rare, so it makes sense for you." Touche dude, just add Yellow 6 and Yellow 10 to the list.

So there you have it, officially out of the starting line-up. Take a seat cancer, you've been benched.

Case in point

Sometimes, after receiving disappointing news, it's nice to have life show you why something happened. It can be reassuring to know that despite the fact that you are crushed, the correct choice was made. Ya know, a friendly pat on the shoulder from life that says, "Sorry you were bummed, but this is why that happened."

Well. It appears that I may have wished just a smidgeon too hard for that friendly pat. Instead of a friendly pat, I received more of a giant smack that said, "um, hello? THIS is why you are not working."

Yes friends, mere hours after being denied a return to work, I landed myself in the hospital.

Now I know what you are thinking- overdose of frozen yogurt, no question.

But my friends, you are wrong. I landed myself in the hospital because my feeding tube (ya know, the one that was a whopping 14 days old) fell out.

I mean, I can't say as I blame it, I probably wouldn't want to be responsible for continually giving my stomach something it hates. That being said, I would have appreciated just a little more perseverance.

Little moment of feeding tube education- when a tube falls out, you should PANIC. Ok, maybe not panic persay, but you need to hightail yourself to the nearest hospital ASAP. That hole closes within an hour and the surgery to get a new stoma is one that I would love to avoid for the rest of my existence. It is with this knowledge of painful surgery and only with this knowledge of painful surgery that I grit my teeth and jammed the thing back in. I'm going to go ahead and assume that you understand that I would not rate that feeling as fantastic...

Luckily, I had just seen my GI on Tuesday and we had decided on our emergency plan if the tube fell out a few days before the 3 month change. (Ya know, few days, few months...what's the difference?!) My doctor called the hospital, booked me a procedure time, I used half a roll of tape ensuring that the tube wouldn't fall out, called a friend for a ride and set off for the hospital.

I should have picked up on the fact that it was going to be an exceptionally special day, when I was "offered" an IV for a procedure that needs no sedation. Or if I missed that moment, I really should have picked up on the specialness when I (yes, me, ya know, the patient) taught the doctor how to insert the new tube and why you use saline, and not air, to inflate the new balloon (it needs saline to weigh it down). But no, instead of running away at top speed like I should have done, I followed directions like a good little patient.

Bad move, reaaaaally bad move.

My doctor decided that he wanted to send me to radiology to ensure the tube was in place. Sounds reasonable enough, right? Well then he added that he also wanted to make sure there wasn't anything in my stomach that had caused the balloon on the first tube to explode and to look for balloon fragments in my stomach.

Oh. Right. I mean, I knew swallowing that pile of thumbtacks must have been a bad idea...?

Mind you, at this point, it has been a good 18 hours since I've eaten or drank anything and my blood pressure is heading south a little bit too early for the winter. I have learned never to leave home for the hospital without some quality reading material. I reach into my bag for my magazine to distract myself from the cotton mouth and fact that I can't necessarily see straight and what do I pull out? Genius that I am, I packed Cooking Light. Fabulous.

After about 4 hours of waiting for radiology, the nurses notice that they can't actually see a single vein anywhere on my body and they decide to take matters into their own hands (nurses = awesome). They corral 2 doctors with a break between procedures, sequester an open room, bribe a tech and wheel me in with 3 syringes full of dye. Allow me to share the highlights reel...

Me: "Oh excuse me sir, but you can't just put a syringe in my port, you need to attach the tube. Oh, you don't know how? Ok, I'll do it."

Doctor #1:"Ma'am, can you lie on your side? We can't find your stomach."

Doctor #2: "Oh that's it! Isn't it?"
Me: "No, that's my colon."
Doctor #3 (called in to track down my "lost" stomach): "Oh, she's right."

Needless to say, I had about 3 syringes worth of dye hanging out in my system, but my stomach was still considered MIA and I had to wait for radiology.

5 and a half hours after I arrived (and 1 issue of Cooking Light and 3 Law and Orders later) I was called to radiology. My nurse dropped me off, told the tech "you have to attach a little tube to the port, she'll show you how to do it" and wished me luck. The radiologist looked at the screen for approximately 5 seconds, told me the balloon was in place, there was nothing extraneous in my stomach and that I was free to go. Stupendous.

At this point, it has been about 23 hours since I've had food or water. After being driven home by a wonderful friend, I finally ingested some real, honest to goodness calories. Only after I had some calories and came back to reality did I notice that apparently I had deemed it more important to run the dishwasher and organize the top shelf of the pantry before I ate.

Hey, at least my kitchen is clean.

Honorable Mention

On Monday, my husband and all my teacher friends will drag themselves out of bed at a rather un-summer-like hour, blearily put on their semi-professional pre-student-arrival clothes and head back to school. They will sit through long, arduous, tuckus-numbing meetings. They will laminate until they can laminate no more, and then they will collapse to the carpet to cut out the giant mound of glossy posters. They will make to-do lists for their to-do lists and undoubtedly, at one point in the week, they will cry their anxious and exhausted sorrows into a glass of wine/cold beer/giant bowl of ice cream. Their paper cuts will have paper cuts and they will think there is no possible way that they will be ever be ready for the students to arrive on the following Tuesday. Oddly enough, it always gets done. No matter what, they are always ready.

I thought I was ready and I thought I would be there, but I won't.

As miserable as the previous paragraph sounds, I wanted every part of it, but I came up short. My doctors cleared me to return for 2 half days a week, but it was denied by the county. To be honest, I completely agree with them. I adamantly refuse to let my obstacles negatively impact my students and having the main teacher at school for significantly less than the substitute just isn't conducive to good and consistent teaching. So I understand the decision and deep down I know my body really isn't ready, but I can't fight the disappointment.

I feel a little bit like I've been handed an honorable mention ribbon. Ya know, one of those light blue participation ribbons that basically says "Hey, you worked really hard and did a great job...but it just wasn't quite good enough to make the cut. Better luck next time!"

So yes, I came up short in this race. I didn't make the team.

Today I let myself be sad. I let myself be disappointed. As hard as I tried, I couldn't shake the feelings of failure.

In case you weren't sure, it is, in fact, very possible to convince yourself that nearly any romantic break-up song on the radio is actually written about a teacher who worked really hard, but didn't get cleared to return to work. Ya know, just in case you were curious. Oh and it works better if you are simultaneously drowning your sorrows in a bowl of frozen yogurt. Just sayin'.

When I look at myself in the mirror, at first glance I see the scars. The surgeries. The PICC lines. The IV attempts gone wrong and of course, the tubes. I could look at these scars and remember pain or the lonely nights in the hospital or the long, agonizing months of uncertainty.

But I've decided to embrace them. My scars tell a story and, mark my words, it will be a story of survival. Today a scar was added that you can't see, a deep imprint on my pride and yes, I am ashamed to admit that today I wallowed.

Every great athlete has an off race, moments of doubt and uncertainty and most importantly, every great athlete has moments of failure. Perhaps it is those painful and frustrating moments that fuel the desire to work even harder, to shape who they are and what they want to accomplish. Today I let myself be sad, but now it's time to move on.

After all, no one ever made the podium by wallowing.

Moment of silence for the black backpack...!

Ladies and gentlemen, big news.

I am no longer donning the little black backpack and I will no longer get escorted out of Target for my overly sensitive pump alarm. Alert the paparazzi, fashion trends are about to change.

Did I get rid of the feeding tube????

No.

Puhlease, you'd read about THAT kind of news in the Post.

I did, however, get an upgrade.

Instead of a transgastric jejunostomy tube, I now have a low profile gastric tube.

In other words, instead of having a frontal tail, I now look like an inflatable beach ball.

Totally. Normal.

In an effort to force the nervous system in my stomach into submission, my medical team decided to do as much as we can to mimic "normal eating." So instead of carrying around a backpack full of formula that feeds me continuously throughout the day (wait, you don't do that?), I now have scheduled "snacks" that I syringe into my little port a few times a day. These "snacks" go directly into my stomach, whereas my old tube bypassed the stomach and went to the intestine.

The idea is that eventually my stomach will accept the feedings and then someday grow to expect them...at which point I will begin gradually replacing the "snacks" with actual food. Always the one to look for the checklist and/or timeline, I was told "about a year or so" which is both a painfully long and overwhelmingly short amount of time all at the same moment.

Pro? No backpack, no pump and no frontal tail. Duh.

Con? You think my stomach doesn't want food? Try a few inches of plastic and processed, pre-digested formula that came from a can...doesn't go so well.

So, as you can see, it's a work in verrrryyyyy sloooowwww progress.

I am working on 2 teaspoons right now kind of slow progress.

Time to bust out the patient pants.

In other news, it has been exactly one week since the formal eviction of my thyroid and I'm told that everything is moving along swimmingly.

Ya know, the "a doctor cut out the decision maker in your body so it has absolutely no clue what is going on and is doing its absolute best to make educated guesses about the rate and efficiency of most processes in your body" kind of swimmingly. Again, totally. normal.

I am able to move my neck a bit more every day and although it feels like someone is strangling me when I swallow, I'm told that will go away in a few months. My ninja scar is healing nicely into the shape of a smile, which I find rather fitting, seeing as I am big fan of a smile and all.

In a few weeks I will have some additional tests done to see if there is still cancer present in my body. If it comes back negative, then I will just have to repeat the test every couple of months and, along with my doctor, be extremely vigilant about checking for any unusual lumps or bumps.

Obviously if the test comes back positive, then I will have to do treatment, most likely only radiation.

Fingers very much crossed.

I am also happy to report that this is the first time in almost 2 years that I don't have any scheduled surgeries looming on the horizon. My new tube will just involve a lengthy office visit every three months and, more importantly, no anesthesia. Even if my doctor does find more cancer in my body, it likely would not involve surgery and (please don't let this jinx it) all other organs seem to be working efficiently enough for the time being. Whew.

It's a bizarrely liberating feeling and I honestly can't remember the last time that I didn't have to make a disclaimer of "I just had surgery" before engaging in a normal task or trying a new activity. It has been a long time since I have been able to just get up and go and even the fleeting idea of a time with no post-surgical restrictions makes me want to jump up and run a marathon, or bike across the country or something equally as crazy, ya know, jump in a lake or something!

But...let's not get ahead of ourselves.

After all, I just had surgery.