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.

A Fortuitous Surgery

Well friends, I have a brand spanking new 4 inch scar across my neck to add to my ninja appeal, but it turns out I didn't need to make up a story to go with the scar.

Remember my little surprise tumor who showed up a few weeks ago and caused all sorts of panic? Well, that tumor was benign...but as it turns out, it had a friend who wasn't.

On the bright side, finding out you had cancer after it has been cut out works out rather well.

My surgeon is very confident that he got all traces of cancer along with my thyroid, so barring any surprises, my battle with cancer started and finished on the same day. Not too shabby.

Admittedly, I'm feeling rather rough, but I know that will get better with each passing day and I am incredibly grateful for the gift I have been given. I'll have repeat feeding tube surgery tomorrow and something tells me that I'll start to feel better once I have a working tube. Ya know, because I'm told that nutrients are kinda vital to overall health. Just a hunch.

I couldn't be more thankful for all of your thoughts, prayers and good wishes.

I am one lucky ninja.