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?

Hello from the edge of hypo!

I  was going to start this yesterday, but, well, I was tired.

...


I'm two days away from subjecting myself to three weeks of medically necessary extreme hypothyroidism and a low iodine diet to prepare my body for radiation treatment in hopes of destroying the remaining thyroid cancer left behind after surgical total thyroid removal and all I can think about is how much during those upcoming three weeks I'm going to miss ice cream.

Oof. Ice cream is good.

But not having cancer is better. Right?

For the past three months, I've been waging a war on an enemy I previously knew next to nothing about.  I mean, thyroid cancer? How often do you hear someone talk about that?  It wasn't until after I wound up on an exam table, peering at weird blobs on a fuzzy screen and contemplating why the ultrasound tech had suddenly gone silent that I even considered what having a healthy thyroid means to a body.

Turns out, it's pretty important.

Many exams, a trip to the ER, one CT scan, a fine needle aspiration, much blood work, multiple doctors, and two surgeries later, and my battle is still ongoing. I'm still learning and discovering and, most importantly, fighting.  I like to think I'm in the homestretch, headed towards renewed health, but I hear this leg of the journey can be the most trying. Ahead of me looms three weeks of hypothyroidism and radioactive iodine and body scans. I'm more than a little terrified.   I'm taking deep breaths and advancing anyway.


At the urgings of my sisters who seemed both enthralled and horrified by the descriptions of the "going hypo" period of Radioactive Iodine (RAI) treatment, I've started this blog.  Expect a bit of info, a lot of personal musings, and, quite likely, a few episodes of just head-to-keyboard.  I'll show up, though, so there's that. 

And, I have these wonderful people to keep me grounded and focused:

The love of my life!  The Capn! Matt.

My babies! Abigail, Jonathan, & Lily

And cupcakes! Cupcakes keep me focused. ;)

Currently, only two very small, white pills of Cytomel stand between me and the next step towards kicking cancer butt.

In the meantime, allow me to catch you up...