It's Glow Time!

The elevator at Virtua Hospital's Health and Wellness building has the most depressing way of announcing its descent. "Going doooown," the robotic lady moans, and you can't help but feel that she'd be better assisted on her journey with a Xanax or two. 

Fortunately, Nuclear Medicine is located on the the second floor and the ride in either direction is brief, leaving you little time to worry about the mental well-being of your transport.

And, on this past Wednesday, my concern for that sci-fi tin gal ranked even lower.  Becoming my own radioactive laboratory experiment, however, raced to the top. 

We arrived to the Radiology Imaging department at 1 pm and checked in.  Within minutes, we were ushered to the back. Steve, our friendly radiologist, took us to the scanning room and explained the upcoming full body scan procedures:  I'd lay on a flat board, neck hyper-entended, legs bent over an oddly-placed pillow, while the scanner took picture after picture of my neck and body to view where all of the I-123 radiation from the day before had landed.  This would help determine the correct dosage of I-131 I'd need that day for treatment. Cool.  The process would take about 45 minutes. Still cool.  And - "Arms at your side, please...Now hold still!" - they would be wrapping me up like a little mummy and taping the sheet closed. Erm.

Thank God for my iPod and Colin Hay.

Meanwhile, Matt amused himself by taking pictures...

After the scan, I was brought to another room for a thyroid uptake test to measure the amount and location of the radioactive iodine in my neck.

That machine only involved holding still for a minute while it worked its gamma magic:

This is what 60 seconds of fun looks like!

After that, Steve told us we had about an hour's wait while he ordered the I-131.  He suggested taking a short walk and returning in half an hour to go over my instructions.  I suggested making a break for it.  Matt sided with Steve, so we ventured down to the parking lot to enjoy a non-nuclear, sunny bench for a bit.

Preparing to glow...

Inside of Nuclear Medicine, you'll find maze of hallways and doorways and rooms with crazy, yellow radioactive symbols. If you continue through the labyrinth, you'll notice the signs getting yellower, the warnings larger, and the doorways more prohibitive.  Follow that last hallway allllllll the way back to a deceptively sunshiney window and hang a right.  There, in a small, rather ordinary room with a firm, rather large hazard warning hung by the door, on this previous Wednesday afternoon around 2:30 pm, you would have found me.  There I sat, Matt by my side, as the tech explained all of the precautions I'd legally be required to take once I ingested the I-131 pill. As she went over the precautions, I calmly nodded my consent.  And then I definitively signed my consent on their papers, because the law and the hospital like to know that you really, really mean it.

Steve dropped in to tell me how much I-131 he ordered:  59.8 millicuries.  He explained that the amount was rather low because I still had a decent amount of thyroid tissue hanging out in my neck and a higher dosage might damage the surrounding tissues and organs.  Ookay. He also said that, depending on how well this round went, there was a good probability I would have to repeat the process in six months...but, there'd be no way of knowing until the first RAI was complete. Oof.  On the positive side, my initial scan did not reveal any metastasis. Yay!

And then we waited.

After another half an hour, two men with a handtruck passed by my door.   One wore a hospital security uniform and carried a clipboard. One wore khakis and a polo shirt and pushed the truck.  On the truck was a black box emblazoned with more yellow hazard signs than even my door. Yikes.   

"You don't suppose that's the pizza I ordered?"  I whispered to Matt, but he didn't think so.

The tech led the guard and truckpusher  in through a locked door across the hall and closed it behind them.

And then we waited some more.

Still not nuclear!

Time passed.  We continued to wait.

Not glowing!

Even more time passed.

Just me, two cups, and a Geiger Counter!

Eventually, Steve stopped by to let us know that the Radiology Oncologist, a necessary component to delivering the medication, was still stuck in his 3 pm consult, but he'd be there real soon.  Ooookay.

And, eventually, he was!

We saw them walk by.  Heard them unlock the door across the hall.  Listened as heavy sounding things thudded against other heavier sounding things.

"Release the Kraken!" I hissed at Matt, but, instead, they returned with a silver cylinder about eight inches tall.  It was covered in even more warnings of terror and danger.

Steve had me put on some blue, plastic gloves, to help prevent me from accidentally touching the pill.  I chose not to remind Steve that I'd soon be swallowing it.  If the gloves made him feel better, well, whatev.

He reviewed the procedure with me again. "I'll dump the pill in the empty cup.  You prime the well with the cup of water.  Then the pill. Then the water.  See?  Chaser. Pill. Chaser.  Got it?"

This was like no bar game I'd ever played.

Steve unscrewed the top to the metal canister and tipped the capsule into my plastic cup.  It was blue and white and innocuous-looking.  It could have been a simple vitamin or a headache remedy.

Except it wasn't.  It was 59.8 miC of radioactive iodine, which I would be swallowing in concentrated effort to send it on a mission of thorough cancer-eradicating/ass-kicking.

Bottoms up!

I chugged it down in a way that would've made a frat boy proud.  Steve used the geiger counter to measure the radiation filling my belly and then led us back through the maze to the the front.

"See you next Friday!" he called, from a safe distance.

Matt and I walked to the parking lot, not touching.  I slid in to the backseat, as far away from him as possible.  43 miles to home with a tummy full of radiation.  Mindful of the expectation that I spend no more than an hour in the car with another person, he set off.

Matt, happy not to be seated any closer to me.

We drove homeward, catching the opening chords of rush hour, but, fortunately, missing the melody.  While Matt deftly avoided traffic jams, I sat in the backseat and tried to think cancer-kicking thoughts.  And then I tried to ignore the fantastically terrible, burning taste that was spreading through my mouth. It was like hot metal sweat socks. Yuck.  I sipped my water and focused on the knowledge that, while radiation is not delicious, it is life-saving and extremely helpful.  And I'll take a mouth full of tinny, smouldering, locker room gear any day if it means victory over cancer.

Tastes like winning!

Day 16 and a smidge: Almost glow time...

It's Wednesday!

::trumpets and fanfare::

I don't think I slept more than four hours last night, if you gather all of the little bursts of slumber and toss them together into a sleeping bag.


Yesterday was an adventure in last minute prepping as we set up my personal containment unit (aka the upstairs).   This will be my home away from home within my home for at least the next eight days. Matt's limbering up in preparation of a week's worth of couch riding.  Trail mix has been bagged, LID Peanut Butter Oatmeal Chocolate Cookies have been no-baked,  Dual Mad Libs have been purchased, walkie talkies have been batteried, and the kids have been briefed on the appropriate use of Skype while at Daddy's.  We are as ready as we can be.  I hope.


I received my second shot of Thyrogen at the Endocrinologist yesterday and was relieved to experience, once again, not a single side effect, aside from a sore butt. Whew!

At Virtua Nuclear Medicine later Tuesday afternoon, I received my test dose, a small, gray capsule of I-123.  This non-damaging radiation dose is used to allow for the thyroid uptake and full body scan I will have today, Wednesday.  Once the doctor has a clearer picture of how much thyroid tissue and/or cancer is present, he will be able to determine the correct dose of the knock-your-cancer-socks-off I-131.  He'll place an order for the pills and, an hour or two later, I'll be saying a prayer, swallowing those bad boys, and getting the heck out of the hospital before I endanger the masses.  Wheeeeee!
 

Meanwhile, I'm off to snuggle my babies for just a little longer...

Day 15: Cheeky!

"Do you have a preference which side?" the Endocrinologist asked me, needle poised above my exposed skin.

"Umm...they're both equally plump. You pick!"

 And that, ladies and gents, is how I got my first injection of Thyrogen.  

Amazingly, so far (12 hours later), no weirdly terrible side effects.  Wahoo! Prior to my appointment, I made the mistake of googling the possible reactions to the shots.  As I was walking towards the front door of the office, I worriedly tried to explain my dilemma to Matt: how could I recognize the side effects when they were happening if they were already happening now before I'd even seen a needle?  I mean, as nervous as I was, I was already experiencing nausea, headache, dizziness, rapid heart rate, and muscle aches.  Also, clearly, I was 100% batty.  Since that last one wasn't going to be on the FDA's interaction list, I took several deep breaths and focused on taking the elevator up three floors. Matt, to his constant credit, continued to reassure me that "we've got this."

 There's something very powerful in those three words. "We've got this."  Even during those times when I'm positive that I don't, it's unbelievably comforting to know that we do.


Later, we stocked up on some things that'd be necessary for the rest of the week: more pillows, a different toothpaste, walkie talkies, salt-free pretzels, lemon drops.  My time to glow is almost upon us...


Tomorrow offers another shot of Thyrogen (maybe in the other cheek, for variety!) and then a visit to Virtua's Nuclear Medicine for the pre-treatment dose of radiation. How's that for a big, busy Tuesday?!

Days 13 - 14: It's the weekend. Eat this! It's good.

I love food.

Love.

LOVE.

There are few things as wonderful as sinking into my seat at the dinner table, eyes and elbows honored to be seated in front of a hearty, delicious meal, steam rising off of the dish, getting drunk on the aroma and pleasure before I even take the first bite.  Add people I adore and some thick, crusty bread, a curl or two of soft, creamy butter...and you have some of my most favorite experiences.

Or give me a good book and some just-released-from-the-oven spiced cookies, a mug of tea to warm my hands around, and a sunny, snowy afternoon, and you have another.

Or let me have some electrically-infused music (think the smoothest of jazz played by an ice cold horn section on a sweltering summer night) while noshing on something crispy and salty and fresh while I swill something equally as cool as the vibe around in my glass, ice cubes tinkling, heart and heat thumpin', belly full and oh so mellow.

Aaahhh...

Obviously, then, tossing a Low Iodine Diet into the equation kind of messes with my mangi mo jo.  The Low Iodine Diet, followed for the last one to two weeks before RAI treatment is pretty restrictive.  It involves avoiding food with iodine, dairy, soy, chocolate, seafood, sea salt,  certain food colorings, and specific food additives.  Additionally, they advise little to no leafy greens, limited grain servings, no potato skins, and no more than five ounces of (no additive!) meat per day.    Also, no eating out, as they say you can't trust a restaurant to prepare things the required ways.

You would not believe how much of our regular food stuffs have other irregular food stuffs in them.  Even meat in the grocery store has been injected with other things that are not permitted.  Craziness.

Thankfully, mini marshmallows somehow pass the LID test. 


This means, then, some creative shopping and some even more creative cooking is necessary.

Hey from Trader Joe's! LID-approved PB!

There's ants on my log! And they're yummy!

Breakfast for dinner involved some interesting recipe changes...

Despite some initial hesitation, I managed to frankenstein these (dairy-free, soy-free, yolk-free, iodine-free):  "Low-Iodiney-Still-Deliciouslike-Appley-Cinnamony-Pancakes!" 

2 c flour
1 tsp white sugar
3 tsp baking powder
1/2 tsp baking soda
sprinkle of kosher salt
1-2 tbs cinnamon
1/4 c brown sugar
1 3/4 c applesauce
3 tbs olive oil
4-6 tbs water
5 tbs + 1 tsp egg whites
2 tsp vanilla extract

Combine dry ingredients (except brown sugar) in bowl. Mix.
In separate bowl, whisk egg whites. Add brown sugar. Whisk again.
Add applesauce, oil, water, and vanilla extract. Mix.

Add dry ingredients. Mix together (adding more water by the tbs as necessary).
Fire up your griddle and MAKE SOME FLAPJACKS! :)

I worried how thick they were, but...

Fluffy, golden deliciousness!

And, even though they look kinda awful, these egg whites with fresh Jersey tomato, sauteed onions, basil, garlic, and oregano were so good!

Okay, maybe not as good as what the rest of the crew had! :/

Yesterday, we visited my mother's shop, Candle Corner, at the Amish Market in Vineland.  On the lower level of the marketplace, there's a variety of fresh food shops, including a produce stand and a butcher.  Fantastic!  Fresh, additive-free meat! In addition to some super nice sweet potatoes and corn on the cob, we picked up the plumpest, juiciest-looking boneless pork chops ever.  I prepared an Orange-Garlic marinade and let those bad boys lounge around in it for awhile. 

See how fabulous?! And it smelled incredible, too!

In the end, we wound up with this:

I am saddened that you can not taste through the screen...It was that good!

Today, since it's Lily's 4th birthday, I'll be making the requested mac and cheese and fried chicken for the brood.  There's really no substituting for that, so don't expect anything nearly as tantalizing next. There may, however, be some baked apples soon...

Day 12: Members Only! Where's my jacket?

Friday morning had me sweatin' with the oldies at the Cardiologist's office.  I completed my stress test on a fast-moving treadmill, jogging my way to a clean bill of heart health. Yay!  While there, the tech regaled me with stories of her struggles with Hashimoto's. 

Then, in preparation for the RAI upcoming on Wednesday, I stopped  by Quest and had some blood drawn. The phlebotomist, looking at my lab order and my neck, started quizzing me about my thyroid.   Turns out, she's struggling with hypothyroidism.  

It seems my scar is now an all access pass into a previously silent Thyroid Disorder Club.  Its members are numerous and varied.  I've run into women of all ages, sizes, colors, and lifestyles who, upon seeing the three-and-half-inch slash at the top of my collarbone immediately touch their own necks (scar or not), smile, and spill stories of their journeys with problematic thyroids.  I've heard tales of hypo, hyper, Hashi's, nodules, ablations, Synthroid, endocrinologists, TSH, surgeries, radiation, and cancer. And I've been imparted words of encouragement, hope, laughter, wisdom, and, yes, frustration.   I didn't ask to join this club (and lord knows, neither did they), but it definitely is nice to feel welcomed.


This membership has not come cheaply, however. After my morning appointments, I went to pick the kiddos up at daycare.  Lily, my youngest, upon seeing the bandage across the inner crease of my arm, sighed loudly and said, "Mommy, bloodwork again?"

I hear ya, Lil, and I couldn't agree more.  The sheer amount of medical attention I've had over these past four months is enough to make both my little family and me quite dizzy -and with much lighter piggy banks! I have now officially reached my "maximum annual out of pocket expense" with my health insurance, a feat I'm not sure I should be impressed or appalled at.  But this part of my battle with thyroid cancer is (hopefully) coming to a victorious close soon and, if it takes a couple more bandaids and a few more copays to get me through, I can deal with that.

Days 8 - 11? I've lost count...

What time is it?

Monday to Thursday of this week have had my head and stomach and heart spinning.  Since the doctor has put me on Synthroid, my energy level has started to return.  It's been lovely not to be completely exhausted after walking up the stairs.  The flip side of that, however, is that I will soon be receiving those two pesky injections of Thyrogen.  This terrifies me like nothing else. Those of you who know me well know how little I like unnecessary medical intervention.  This has naught to do with being tough and everything to do with being a big baby in regards to medicine.  I gave birth to two out of three of my children with no epidurals, no drugs, nothing but two Tylenol and some deep breathing.  I've had five surgeries, all only aided by more over-the-counter tabs of Tylenol.  Partial credit is attributed to what my surgeon called "an unusual and exceptional tolerance of pain;" most of it is due to my bigbabyitis.  My list of allergies is long and daunting and I'd rather not discover new ones to add to the queue.

So, I've spent some of this week down and mopey and a bit in meditation and prayer and more in anxious hopefulness and a large chunk arguing with insurance companies and the rest taking care of a seven year old boy with a stomach virus (No worries! He's recovered nicely.)

Because of the Thyrogen, which I am to receive Monday and Tuesday (assuming they straighten the shipping out TODAY), my RAI is now scheduled for Wednesday- two whole days early.  And, that, my friends, I am actually psyched for!

In a more delicious update, Matt and I have been testing out Low Iodine recipes, since that diet regimen still has to be followed.  We've discovered at least one winner, Oven Baked Sweet Potato Fries.  Zomg. Thyroid or no,  make these today!  And I've created a trail mix to help quell my chocolate-deprived sweet tooth: a crunchy, sweet blend of raisins, salt-free mini pretzels, unsalted peanuts, and mini marshmallows. Yum!

Also noteworthy (by not as great as snacking!), the cardiologist gave me a clean bill of heart-health today. Woot!  He's ordered a stress test for tomorrow morning to "calm down any nerves [my] Endocrinologist may have," but he doesn't foresee my ticker needing furthering tinkering.

Day 7: Pick a Card(iologist)...

The longer I've been sans thyroid hormones, the more I've been having these irritating (and slightly scary) episodes of chest pains and palpitations and dizziness. I've been chalking it up to the whole low blood pressure/low heart rate aspect of being hypo and have basically been brushing it aside, assuming I was just attempting too much physical activity.  Today, however, I was on the phone and got a bit agitated about the conversation.  Instant chest pain.  It was so persistent and unexpected  that it actually made me a smidge frightened.  I rested for a few minutes to see if it would subside (It did.) and then realized that maybe this might be worth mentioning to my doctor.

Fortunately, my Endocrinologist answers his own after-hours phone line, even on a Sunday.  After discussing my symptoms as well as reviewing the effects of the anaphalaxis in the hospital (I had strained my heart muscle which dumped enzymes in my bloodstream indicative of depleting my heart of oxygen), my Endo felt that, perhaps, my ticker was not dealing with this hypothyroidism as well as he'd like.  He called in a precription for Synthroid to get the hormones back in my body and told me I'd need to visit a Cardiologist.  However, now that I'm on Synthroid, another method has to found in order to raise my TSH (Thyroid Stimulating Hormone) level enough to still be able to complete the RAI treatment. (This hormone, as mentioned before, is the one that needs to be high in order to make the cells "hungry" for the radioactive iodine.)

As an alternative to the natural deprivation of simply going without the thyroid hormone for three weeks, an injectible form of TSH is available.  Delivered by two shots on the two days preceding pre-scan uptake, Thyrogen takes the place of the body's own TSH and effectively makes the cells just as ravenous for the iodine.   It's superhard to get approved by insurance however, and otherwise costs $2000...so, here's hoping!  The Endo says he'll work on that part, in hopeful anticipation of keeping me on target for the full RAI dose on 7/26.

Suffice it to say, I'm feeling a tad defeated right now.  Praying for these last two weeks to fly by on schedule with no further complications.

Day 6: Take 2!

We dropped the kiddos off at their dad's,  hit the dollar store for movie snacks, and headed Drive-In-ward.  Somewhere along the way, my new friend Extreme Exhaustion and his buddy Totally Off Balance hitched a ride.  Sigh.  Matt, seeing me fade from the passenger seat, asked me if I was sure I'd be all right.  Game face.  Sure.  Five minutes after that, he asked again, and I conceded defeat.

What a lovely night to...turn around and drive home!

Rather than waste a date, we decided to create a movie theater at home!

 

 

We built a cozy fort...

Popped some chocolate chip cookie dough in the oven...

Set up the concession booth...

Piled that fresh baked goodness on a plate...

And snuggled in for a show!

The movie was pretty good, but the company was AMAZING...and the traffic after the show couldn't be beat! ;)

Day 6: Meet me at the snack bar!

Matthew told me to get all my bloggin' today out of the way before we hit the movies for a date night.

Yep, that's right. Movie date. Complete with popcorn, Sno-Caps, AND the general public. 

We're going to the Drive-In!  Movies where I'm free to adjust the heat to my liking, stretch out to shake the electricity from my fingers and toes, and fall asleep with no fear of my snoring waking my fellow theater-goers. Wahoo!

With everything so health/cancer/hypo-focused lately, I've been feeling less and less like a regular person.  It's been my experience that acting sick actually makes you sicker and, yes, I do tend to err on the "Wheee! Look what I can do!" side even when I'm supposed to be in bed, but, I absolutely still need activities that leave me feeling only two-shades from normal.  And, I need Matt to occasionally be able to feel like things aren't so very far from regular life either.  So I'm taking the night off from thyroid cancer and heading out (slowly, carefully...) with my love.

Plus, how neat does a Drive-In sound?!

Meanwhile, I've spent a lovely, lazy Saturday couching it up as much as possible and playing board games with the kiddos and Matt when I wasn't sleeping in preparation (I hope) for staying awake and okay(ish) for this evening's double feature.

Dibs on the Reeses Pieces!

Day 5: Super SloMo

Recently, I've been told how brave and courageous I've been about this whole cancer experience.  While some days, the image of myself in a kickass cape and/or sleek, sexy superhero suit (hey, it's my imagination, I can erase the reality of any unnecessary jiggle if I want to!) helps to propel me forward to my cancer-free goal, it has very little to do with bravery.   When someone with a microscope and intimate knowledge of your insides tells you you have a disease that can and will kill you - ZAP!- if left untreated, but - CRASH!- he has the magic bullet to fix it - POW! -  if you'll just do these things, well then, by God, you do those things. -BOOOOOOM!-  If the alternative to undergoing two surgeries, countless crazy medical tests, uncomfortable recoveries, becoming extremely, painfully hypo, and ultimately turning myself into a miniature nuclear reactor is death...then choosing to be examined, sliced, prodded, taken apart, sewn back together, prodded some more and becoming tired, puffy, grumpy, tired, forgetful, tired, cold, tingling, and glowin' green is an easy one.

This is the same "bravery" we all employ to get through our days, our struggles, our private journeys. To toss some Ian MacLaren atcha: "Be kind. Everyone you meet is carrying a heavy burden."  This could not be more true. We do what we need to do to carry our load and, if we're lucky, find that kindness in those around us. 

Do I sometimes, in those quiet, frustrating hours, get sad about everything I'm enduring? Absolutely.  But either Merriam or Webster defined endurance as "permanence, duration" and "the ability to withstand." (I refuse to link you to the dictionary.)  The source of my perseverance, my insistence on permanance, of my continued duration is not bravery.  It is, undoubtedly, love and stubbornness.  Love of my family, my life, my future, and the futures of those surrounding me.  Love of my friends and my God and my crazy adventures I have had and have yet to have.  And stubbornness?  This is, perhaps, the strongest of any trait you could ever attribute to me.  I'm a sucker for causes and ideas and, once my heels are dug in, you'll need a backhoe and a good pulley system to get them out of the earth. I'm all "Hell No, We Won't Go!"...unless we're dealing with this cancer.

This cancer can get the eff out.

That stubbornness is, unfortunately, the reason why I continue to try to do what I know my body does not want to do.  This morning, for example, I woke up feeling mostly good.  The weather was cool and the storm was still being held back by a gathering of stern-looking rainclouds who appeared determined to enjoy the sunrise before getting to work.  I took the opportunity to take as leisurely-as-I-could-manage walk around the neighborhood.  When I returned, I pushed myself a tad farther, following bunnies around the yard for some fluffy-tailed photo ops.  I had been kneeling down to take a couple of garden shots and, pic completed, stood up. Not super fast, not bouncing up, not springing forth. Normally. Like a normal person.

I am no longer a normal person.

My body is certain of this. My brain sometimes forgets.

Immediately, my brain screamed "WHAT ARE YOU DOOOOING?!" while my body, having no way of effectively bringing blood quickly up to my cranium, starting turning the world black.

See? Hardly worth passing out for.

Again, forgotten functions of the thyroid.  Sigh.  Without thyroid hormones,  blood pressure and heart rate are significantly lower.  Until my rise from rabbit photoging, everything was nice and steady and slow.  My head, however, refuses to accept that new pace as my actual state.  As my conscious brain was truckin' along to its normal, spirited "We Will Rock You," my heart was gently groovin' to "Moon River."  This was not a good dance party mashup.


I lowered myself to the front step and put my head between my knees as my heart flopped around uncomfortably like a washed up fish.  Since lying spread eagle on the porch would probably alarm the neighbors, I waited until the ringing in my ears stopped and my heart regained a normal rhythm to wobbly follow the brick wall into the house and ease myself onto the couch. 

See what I mean?  Stubbornness.

I spent the rest of the day trying to reconcile myself with the reality of my body.  My heart is slower, I do feel weak,  I can't do anything as quickly, and my fingers and toes go all electric and tingly all day long.  I know I need to handle myself a little more carefully in the upcoming days and weeks.

And that's okay.  I've got endurance and love and stubbornness and, on the days when that doesn't seem like quite enough, I maybemightmaybe can eek out a little bravery, too.

Day 4: Good day, sunshine?

I decided to clean out the hall closet today.  I came up with a wonderful organizational plan, where all of the bulky winter coats would be moved to my son's seldom used closet, the gift wrapping materials would be flattened and stored tidily inside one basket, and the excess out-of-season purses and bags would be effectively re-homed in my bedroom storage cubby. What domesticated bliss!

I thought about all of this from the couch. While lying down.  Not moving.  Never even touched that closet's doorknob.

I have redefined what fatigued means.  Yowza.

The mid-afternoon brought a back twist of the vice, releasing enough of the exhaustion to motivate me up and out.  I moseyed to the bench in the front yard to bask in the sunshine of a perfectly gorgeous summer day. Aaaah!  It was nice just to be able to sit outside, toes caressing the grass, to listen to the cicadas and relax.  ::happysigh::

Crazy how much perspective you get on good.


The sunshine prompted me to give my brain a bit of airing out as well.

Fair warning: if you abhor poetry, skip the rest of this entry and I'll see you tomorrow... ;)




Take Your Medicine.

Dose me with new air

Salve me with green grass

Poultice me tight with heavy waves of hazy heat

Wrap me firmly in golden sunlight

And set me by that crooked tree with roots

Beneath my bones to mend.

Roll me to the vegetable garden

To chomp tomato ripe straight from vine

And give me the sticky dram of juicy sweetness

unmeasured by full pulpy seeds.

And I’ll watch the centipedes

Scale, victorious, the bean poles

Foot by foot, on their pursuit of the sky.

So catch me a firefly and then feed me

dusk-hued honeysuckle

From that bush that overflows

the garden gate.

Place that elixir of long summers

On the tip of my tongue

Then tuck me by the berry bush

Bathed softly by pale yellow moon.

And I’ll dream as the stars

From bright perch up above

Keep watch of the ward down below.

Day 3: It's time for the Regulator!

Last night, Matt caught me sitting quietly with two fingers pressed to my jugular.

"What are you doing? Are you taking your pulse?"

"Uh huh. Shhhhh."

"What's it doing?"

"The usual. Shhh! I'm just...checking up on it. My body isn't able to control a lot of the things it used to be able to control when I had a functioning thyroid.  I feel bad for it. I feel like it maybe needs a hand. Without my thyroid, it's unregulated"

"Uh huh. So you're...regulating it?"

I paused and thought for a moment.

"I guess not. I'm more like...cheering it on.  Offering it some positive encouragement!"

And yet he loves me.


Since one of the things the thyroid does is regulate the heart,  not having a thyroid means a slower, less consistent heart rate. And since I'm now (unnecessarily) mentally cardiologically-focused thanks to the anaphylaxis in the hospital, this means a slightly more cautious me.

Trying to regulate one's own heartrate from the outside while "going hypo" is a lot like trying to control your  teenager's behavior via nanny-cam while you're away on a business trip. If you see your living room suddenly flooded with noisy 16 year olds, what are going to do?  Call home and yell? The most you can do is hope that they keep their feet off the sofa and don't eat all of your food.

Or, y'know, you could turn off the screen and go have a drink in the hotel bar.

Without the Big Daddy Thyroid at home, cellular metabolism, heart contractions, and nerve function are all impacted. (You can read a little more on how busy the thyroid is here.)  The longer he's out of town, the worse the kids behave.

I'm currently saying a long-distance prayer that I raised 'em right.



This is the third day I've been operating without any hormone and, as with the previous two, I have had long, lovely stretches of feeling mostly me.  However, I put Lily down for her nap this afternoon, and 20 minutes later, was hit by the strangest, most awful fatigue I've ever experienced.

Those who know me well know I don't do tired. I loathe tired. Tired is, most definitely, one of my least favorite  feelings. Ever.  I'm either 100% awake and together or I'm rapidly progressing from rigid crankiness to immediate sleep.  If physical factors prevent me from sleeping (Let's say I'm working or driving or parenting my foolish children who don't yet realize the danger of not letting Mommy sleep),  I'll rally and second-wind it from deep within a slumber reservoir. There is no inbetween. I can't do tired.

Today, however, the reservoir ran dry.  Someone had yanked the stopper out of my bathtub and all of my energy was ferociously sucked down the drainpipe.  As the last of that vivacious viscosity flowed away,  I resigned myself to the couch.  I could not do anything else if I tried.

Blech.

The focus:  how great it feels when the energy returns and I'm not all washed-up. Those moments are many right now.  Let's see what Thursday holds.

I'll bring the rubber ducky; you grab the soap!

Days 1 and 2: Can I get some ear muffs?

Day 1:

Monday marked my first day off of the Cytomel.  On the whole, I felt pretty...normal.

It was, sadly, my first day out of work, and I opted to keep the kids home from daycare and enjoy the time with them while I still have the energy to referee toothpaste fights and emcee mini dance parties. 

Do you know the way your body feels when you're just getting a head cold?  That was the sensation all day long (minus the post nasal drip!); a vague feeling of maybe-not-well/sort-of-worn-down. 

In the afternoon, I took the kiddos to the supermarket.  Remember where I mentioned I have cold urticaria? Um. Yeh.  Multiply that by three or four now.  A 20 minute visit through the grocery store resulted in a hive-covered me.  My ears were red icicles.  My arms were itchy and swollen.  All I wanted was to buy my lunch meat and toilet paper and go home to my couch and warm afghan.


Thyroid Cancer Canada says this about the process of foregoing meds in preparation for RAI:

"‘Going hypo’ is a gradual process with symptoms (if any) increasing slowly over the six week period. The longer the patient is off of thyroid hormone, especially during the last two weeks prior to RAI treatment when no thyroid hormone is taken, the more likely the patient will experience symptoms of hypothyroidism.
Some Symptoms Associated with Hypothyroidism:

• Tiredness, loss of energy, weakness
• Trouble sleeping, nightmares or excess sleep
• Puffiness especially in the face and bloating
• Loss of ability to concentrate, memory loss, absentmindedness
• Weight gain
• Anxiety, panic attacks, irritability, mood swings
• Depression
• Dry eyes, skin and hair; hair loss
• Change in menstrual cycle
• Joint pains and stiffness, muscle cramps
• Intolerance to cold
• Constipation and/or nausea
• Tingling or numbness in fingers or toes
• Itchiness
• Ringing in ears
• Slight changes in eyesight   "

Check me off for the cold intolerance!





Day 2: 

It's 81 degrees in the house.  I am wearing a long-sleeve cardigan and drinking hot coffee.  My ears and nose fully believe we're enjoying Siberia. Outside. In the winter. Nude. 



There's this crazy crackhead I see sometimes walking along the main drag near the highway.  She always wears the same thing, regardless of the weather: fuzzy sweatpants and a thick hoodie zipped up tight, hood pulled forward over her eyes and cuffs yanked down over her hands.  It could be 115 degrees and she's rocking this look.

I feel we may be able to trade fashion tips shortly.


Is identifying with crackheads a listed side effect?




...

 

No more flying, crazy butterfly!

We checked into the hospital, Matt and I, at the gorgeous hour of six am,  beating both the sun and the front desk volunteer there that day. 

The clerk at registration took all of my information and confirmed that I knew what I was there for.  Then she asked if I'd ever been there before.  "32 years ago, I was born here," I replied, feeling slightly off-balance.

Hours later, I woke up in recovery,  more okay than I'd expected.  My neck hurt and was a little swollen, but the pain was not severe enough for me to request anything but two Tylenol.  The incision was covered by a small, 3 " long, white, bandage.  Dr. Shah assured me he'd been able to locate and preserve my parathyroids and, thus, I would not need any calcium supplementation. Great news!

The next morning, looking like this,

Cheerful, a bit swollen, and in good spirits!

 I went home. 

(Want more information on a thyroid lobectomy?  Some WebMd basics )




Recovering was not terrible at all. 

See? A few days after that and feeling pretty awesome.

 I felt so excellent, in fact, that by the following Thursday, I donned my best hat (have to protect the incision from the sun!) and attended one of oldest and dearest friend's med school graduation.

That Friday, feeling pretty good, I drove myself to Dr. Shah's office for my post-operative followup. Matt offered to use more vacation time to come to the appointment with me, but I declined.  I was simply going in to have the bandage removed and discuss future need for thyroid testing.  I also wanted to ask him about some swelling under my chin.  Routine stuff that didn't need a partner who'd been burning through vaca days on my behalf.

I arrived at the ENT office and checked in at the desk.  "That's strange," the receptionist remarked.  "I don't see your pathology report here. Let me call over for it."  I was sent back to the exam room to wait for the doctor, excited at the prospect of getting the bandage off.

Dr. Shah opened the door and my chart at the same moment.

Have you ever watched another person reacting to unknown difficult news,  been distinctly outside of someone else's emotions and watched,  not knowing what they know, but simply seeing how the struggle preys upon the face?  In the span of seven seconds, I had a window into someone else's distress, watched the weird flinch and twist of unwelcome surprise and the swift slam of suppression as he struggled to regain professional doctor composure. I watched this and knew immediately that these emotions held intimate knowledge of me and mine and, in that instant, I knew also what the pathology read.

 "How are you?" he asked, but he didn't look me in the eyes or wait for an answer.

"Well, this is not at all what I expected," he said, waving his arm, my medical file flapping like an injured bird.
 
"You have thyroid cancer."

 Those words burned in an unspeakable way and I closed my eyes for the briefest of moments.  He explained that, despite the fine needle biopsy results, cancer had been lurking in the nodule, that it was almost 5 centimeters when he freed it from my body. ("It was this big!" he showed me holding up fingers, and I couldn't help but think "halfway to the pushing phase!" But this was not a joyful birthing.)  He said that the larger a nodule is, the more of a chance for a false-negative fine needle aspiration biopsy result, that, at that size, the chances of it actually being cancer had still been 15-20 %.

The pathology report identified the cancer as follicular variant of papillary carcinoma. 

He told me that I had "the good cancer" and I half-laughed, even as a cavalry of tears lined up behind my eyelids.  He went on to explain the treatment of thyroid cancer, of how Radioactive Iodine treatments serve as "cancer-seeking missiles" to irradiate any remaining or even metastasized cancer cells.  The nerd in me, that side that forever marvels at how plants grow and buildings are built, stirred from deep under the blanket of unmoving, unallowed sadness.  The idea behind the treatment is, quite frankly, fantastic and, even in moments of terror, I can't help but think, as my 5th grade science fair self, "Coooool!"

The doctor checked the swelling under my chin and pronounced it a swollen salivary gland.  Antibiotics and time, he felt, should take care of that.

He removed the bandage quickly to reveal what had to be the most perfectly straight, barely visible incision scar ever. Holding up a mirror to it he said, "Well, you can see, it looks great.  Sorry."  I laughed and couldn't help but thank him for the great millinery job that he'd soon have to be destroying.

Can you even see the scar?  This is the day the bandage came off. How unfortunately perfect, eh?

The doctor suggested a second surgery to remove the other half that Thursday, saying he planned to reenter through the original incision.  He also referred me to an Endocrinologist for pursuing the RAI treatment.

Knowing that he'd hit me with much at once, he graciously offered to call me later to answer any questions  we may have.


I can not adequately express how much it hurt to have to phone Matt at work to tell him the news. He met me in a Dunkin Donuts parking lot nearby to make sure I was all right. I was as all right as someone whose just been told she has cancer can be. 


Explaining it to these three was even more difficult:

The best kids ever.

Luckily, I have the most awesome kids on Earth (I may be a smidge biased...) and they handled it like champs.  Their main concern was the upcoming two week period of no snuggles. 


The day before my second surgery, we met with the Endocrinologist and went over the timeline for radiation treatment.  Basically, I was looking at starting the process six weeks after my total thyroidectomy.  I'd take 25 mg of Cytomel daily until then. Then, I'd take nothing and deplete my body of all thyroid hormone and, a week later, switch to a low iodine diet.  The process is designed to make the remaining thyroid and cancer cells "hungry" for iodine, a necessary tool for them to function.  Once ravenous, a capsule of radioactive iodine is swallowed.  Since the only place in the body that uses iodine is the thyroid, the radiation heads straight to those cells and destroys the cancer.  Exciting, right?  The process has some unhappy effects on the rest of your body, though, making those three weeks long and arduous.  Okay.  I put on my brave face and forged ahead.

The second surgery went just as smoothly as the first, and I woke up with even less pain and swelling than with the first go round.   Unfortunately, later that evening, I developed a sudden, severe allergy to the IV antibiotic, a drug I'd had many, many times before.  I spent the night in the ICU with Matt by my side.  This, by the way, is not a fun place to be in the hospital.  Avoid needing this ward!  While the care was great, life-saving measures are never enjoyable.  Unlike the rest of the hospital, however, the cable tv was free! Wahoo!

 The next morning, after a visit from the cardiologist, pulmonologist, ENT specialist, and surgical resident, and now on a prescription for steroids and Cytomel,  I was given the okay to leave.  Wheeee!

Puffy but free!  On the way home from my total thyroidectomy completion.

The follow up with my ENT surgeon revealed that the left lobe had had cancer as well. Oh my. On the bright side, both wings of that butterfly are now gone. I have no thyroid left. Hopefully, all that stands between me and being cancer-free is my RAI treatment.  From April 22nd until now, my somewhat silly, very comfy life has gotten all topsy turvy.  I'm more than grateful for the support and love of my family and friends, and, in particular, Matt, who has been my strength by my side, fighting and praying and laughing and crying along with me.  I'd like to think we're in the last leg of this thing, that we're going to kick butt and get back to enjoying the average, everyday things...soon.

"Second" scar! 

Now?  Now I cut off the thyroid meds in preparation for a cancer-kickin' dose of radioactive iodine.  Things could get interesting...

Journey to Gurney

I woke up on the morning of April 23rd with unnaturally rosy cheeks and feeling vaguely unwell.  The night before, we'd taken the kids to a Phillies game -their first!- to celebrate my son's 7th birthday.  It had been ridiculously cold up there in semi-cheap seats and I'd broken out in my customary cold-weather hives. Totally normal for me; I have cold urticaria, a skin disorder that makes me itchy when I'm chilled. What wasn't normal: I was still all hived-up in the am.  I stared at myself in the mirror and considered my situation.  For the past two months, I'd been feeling sluggish and worn-down.  I'd come from work at around 9 pm, snuggle the kiddos, tuck everybody into bed, and fall asleep sitting up on the couch before 10 pm, mid-conversation with Matt, my wonderful, understandably exasperated boyfriend.  I was sleeping for nine hours and getting up exhausted.  As someone who typically bounces awake after six hours, this was more than disturbing.  Things that usually refreshed me- brisk walks around my neighborhood, for example- were leaving me winded and fatigued.  For quite some time, I'd been chalking it up to energy drain from the long, strange work hours I'd been keeping.  My job is awesome, but those particular months had been more than a little stressful.  And my typical 10 hour day had been morphing into12 hour shifts with hour commutes on either end.  Add three busy kids at home and it was no wonder I was tired.  Right?  However, long days and spending time with my babies had never made me feel like this before.  I was exhausted and, now, itchy. 

I dreaded calling the doctor that day.  "Hi, I'm itchy and tired.  Can I make an appointment?"  How crazy would that sound?

Then call me crazy. Something felt wrong. I made the appointment.

Sitting on the exam table, explaining to my slightly incredulous-looking doctor how I was exhausted and had been "too hive-y" was not the most confident moment of my life.  My primary doctor is also my children's doc, and he knows how I balance a nine, seven, and three year old with a more than full-time job.

"Any other symptoms? Besides the hives and tiredness?"

"There's been a strange metallic taste in my mouth."

"You probably have a sinus infection. And cold urticaria, but you know that. And you're tired.  But let's check you out."

"I don't feel like I have a sinus infection."

"Okay."

Pretty sure he was just humoring me at this point.

He did his doctoring thing and I did my sitting there feeling slightly silly thing. Then he got to my neck. Took a step back, tilted his head. Felt my neck again.

"Okay," he said.  "I don't want you to freak out..."

"WHAT?"  (Seriously, why would a doctor ever start a sentence that way?!)

"...but I want you to get an ultrasound of your thyroid.  The right side is a little enlarged.  Don't look like that.  It's probably fine, but I want you to get it checked out anyway."

(Don't look like what?  I can only assume I adopted a mask of equal parts fear and and confusion.)

"Meanwhile," he continued, "we'll get some bloodwork and I'll give you a prescription for an antibiotic.  For your sinus infection."

He sent me straight to the Imaging Center, where a very nice, very chatty tech slathered my neck with warmed ultrasound goo.  She waved her magic wand, pressing firmly into the base of my neck,  taking picture after picture of the butterfly-shaped gland nestled there. As she focused on her computer screen, she became strangely, uncomfortably silent.

"Everything...okay?" I asked.

"Just taking measurements."

Ooookay.  Staring at the screen, the wavy rainbow lines and bumpy blobs meant nothing to me.

Ten minutes later and none the wiser, I was out the door. 

I went home and got drunk on google.  Everything I read was encouraging; the stats were in my favor for the possibility of a simple benign nodule. The size would determine the treatment and I should not stress. I SHOULD NOT STRESS.


When the doctor called to tell me that I had a 3 cm nodule on the right thyroid lobe and  I'd need a fine needle aspiration,  I was, perhaps, stressing a little.  He explained that a fine needle aspiration is very much what it sounds like: a very long, very fine needle is inserted into your thyroid and cells and fluid are extracted for sampling.  (You can read a little more info on that here .)  I scheduled one where he suggested, at a regional hospital.  The earliest appointment they had was nearly a month away. Okay! I mean, if they'll let you wait four weeks, you can't be that bad off, right?   A call from the lab increased my security: all of my bloodwork was normal, indicating a normal functioning thyroid. 


That weekend, I found myself in the Kennedy Emergency Room, hoping for answers to my sudden difficulty in swallowing and increasing choking sensation.  The barely-perceptible lump on my neck had now become quite noticeably larger, large enough to where even Matt, my other, more practical, half was now concerned.

That there's a goiter!

The ER doc checked me over and explained to us that he didn't think it was my thyroid swelling like that; he believed it to be a swollen lymph node.

 "Any recent illnesses? Infections?"

"Well, my doctor says I have a sinus infection, but I don't really think-"

"That's probably it, but I want to send you for a CT scan, just in case."

When the results came back, his diagnosis was different.  "That most definitely IS your thyroid," he said.  He went on to explain that he felt it was also a case of thyroiditis, or inflammation of the thyroid, caused by either a virus or, perhaps, all of the recent handling (doctor, ultrasound, etc.) of the past few days.  He said the CT scan showed two nodules and it'd be smart to move my biopsy up to an earlier date.

The next morning, my doctor arranged a visit the day after with an ENT specialist who would perform the biopsy in his office. 

Matt and I  met with Dr. Shah, an ENT specialist and surgeon, to review the films and talk about what was going on.  Dr. Shah explained that, despite the fact that 90-95% of all thyroid nodules are benign, because of the size of the larger or the two, I'd need surgery.  He said that, assuming the biopsy came back benign, the plan was to remove the right lobe, but leave me with a fully functioning left-side that should effectively do the work of two.

Because I have a long list of allergies, I elected to have him do the biopsy without any numbing agent.  Sitting in his exam chair, I tipped my head back and focused on breathing slowly and not moving. The needles were like sleepy bee stings, sharp and lingering.  I was grateful to not be able to see what he was doing.  Matt was not so fortunate. 

Afterwards, we stopped for ice cream and drowned our trauma in chocolate peanut butter bliss.

At my follow up appointment a week later, we waited anxiously for the biopsy results.  No dice.  The lab had not returned them.  Dr. Shah discussed the thyroid lobectomy and explained what I could expect.  Surgery never sounds great, but, the alternative -letting the growth continue to enlarge and press upon my windpipe- was a less appealing option.  He was kind enough to ensure me it wasn't cutting off my air supply, but suggested we do the surgery soon.  To be sure my voicebox was not being comprised, he performed a quick fiberoptic laryngoscopy. (More info on that procedure  here .  Again, this was one of those medical tests I was happy to not be able to see; Matt was not so lucky.)  I left the office a bit reassured, and, a few hours later, got the phone call from Dr. Shah.

"The pathology says its consistent with being benign."  Woot!


We celebrated by planting a garden and drinking Riesling by the mason jar. Here's to the future!

Matt and Jon-Jon plant some flowering shrubs!

 

...and I enjoy the finer things!

Up next: a simple surgery?