Welcome to the New Age

Before you begin reading, I offer you a soundtrack for this blog entry:



I actually really like that song, and Imagine Dragons in general.  The video itself though...very interesting.

So that's where you've been hiding, Lou Diamond Philipps.

Today is the day of my radioactive iodine treatment, almost exactly 6 weeks after my total thyroidectomy.  I've already taken the RAI and am coming to you live from my isolation room (aka my bedroom at my parents' house).  But first, I'll bring you back to a few days ago.

On Wednesday morning, my first day off of work, I woke up and headed to my endocrinologists office to receive my first of two Thyrogen injections.  In a small minority of patients, side effects can include headache and nausea.  While I was super worried that I might experience that, all I got was some arm muscle soreness, akin to a flu shot.

That's right, I said arm muscle soreness.  For some reason, despite online documentation saying that the injections were to occur in the buttocks, UCLA Endocrinology just injects into the arms.  Woohoo!  So I got my Wednesday shot in my right arm, and went home, packing and prepping for my isolation at home.  Emily came over and cooked me a ton of low iodine pasta, since I have to stay on the LID through Sunday night.

On Thursday morning, I set out to get my second shot.  I arrived at the office to see a fire drill taking place; I ended up getting the shot 30 minutes later than my appointment time.  Oh well.

An alarming site at the UCLA medical building, especially for a drill.

After that, I got a dental cleaning done (some online literature suggested getting a dental cleaning done before RAI, for reasons that will be evident later), and went to my parents house, had dinner, and rested up for my big date with destiny.

My appointment had somehow been moved to 10am (formerly 11am), and the only reason I even realized this was because UCLA left me a voicemail appointment reminder.  Yikes, good thing they called.  And prior to the appointment with nuclear medicine, I had to get my blood drawn at the walk-in UCLA lab.  So, I woke up around 5am and had breakfast around 5:30am.  Why so early?  The doctor had told me not to eat anything for about 4 hours before the appointment.

Finishing breakfast at 6am, I got ready and left.  I couldn't eat anything for about 4 hours before taking the RAI, hence the early start to my day.  After a quick detour to my apartment to pick up a few things I had forgotten, I got to the UCLA lab at around 8:30am.  I ended up waiting almost 45 minutes, but finally got my blood drawn and walked across the street to the main UCLA Santa Monica hospital, where the nuclear medicine department was located.

The initial blood draw was ordered by the nuclear medicine doctor to get a baseline measurement on two things: TSH and Thyroglobulin.  TSH, which I explained in my previous post, was at this point undoubtedly elevated due to the Thyrogen shots, so this test just acted as a double-check of that.  Thyroglobulin is something I haven't explained before, but it's pretty simple.

Thyroglobulin is an easily detectable protein that any active thyroid cells produce and release into the blood.  My reading a few weeks ago was 1.3, which is quite low, but after RAI, that number is expected to decrease even more, perhaps to an undetectable level.  Thyroglobulin serves as a very easy cancer marker to test for; if any thyroid cancer cells return, then they too (like healthy thyroid cells) will release thyroglobulin, so any significant spike in that number will indicate a recurrence.

I walked into the reception area for nuclear medicine about 40 minutes early, got checked in, and started to wait.  I guess they were ready for me, because by about 9:30am, they called me in.

From stories I've heard, the next steps would involve people in hazmat suits handing me a pill and running away from me while I swallow the pill.  I guess safety standards have relaxed in recent years, because two nurses met with me in the hallway of the nuclear medicine area, with the lead container already sitting on tray.  I had a seat, talked to Dr. Gupta about some last-minute safety questions that I had, signed a form, and then it was go time.

This is where I keep my medicine.  Excessive?

I swallowed the pill with a whole glass of water and left.  Seriously.  It was that anti-climactic.

I jumped into my car while chugging water and headed home.  Luckily, my sister had given me this nifty gift to store maximum water:

Say hello to my Bubba.

Seriously, the brand name is Bubba.  Why did I drink so much water?  I'll post more later this weekend about the joys of nuclear isolation, and the safety precautions I have to take to get all the unneeded radioactivity out of me ASAP.

Why couldn't the pill have come in this form???

Until then...

-W

LID Week 1 Post-Mortem, brought to you by Thyrogen

Well, I'm half-way through my LID, and things are going well!  While I do miss cheese and seafood and the like, I can't say that I've been suffering through this at all.  I haven't lost weight yet like I hoped I would, but hey, you can't win them all.

I've gotten by in large part due to Emily's cooking.  She studied up on the LID and made some great meals for us, like:

- Spaghetti with tomatoes and lentils
- Homemade hummus
- Whole roasted chicken with rice
- Chicken noodle soup
- Sweet and sour chicken wings

I also have a newly discovered love of oatmeal, which I've been having every morning at work with frozen berries, agave nectar, and coconut milk (free of sea salt or carrageenan).

And contrary to my belief, it's possible to have a social life while on the LID!  On Saturday, Emily and I went to Rosenthal Wine in Malibu to celebrate her cousin's birthday.  And then, after that, we went to the Hollywood Bowl for the Tchaikovsky Fireworks Spectacular, with conductor Gustavo Dudamel, the LA Philharmonic, and special guest the USC Trojan Marching band!  If you look closely at the photo below, you can see the marching band lined up around the front of the stage.

The fireworks rise to wake up those who fell asleep to the classic music.

So now, in week 2 of the LID, I have to start getting ready for the 50 mCi radioactive iodine dosage, which I'll be receiving on Friday, July 31st.  And fortunately, because it is the standard within the UCLA Health system (which my endocrinologist is a part of), I will be receiving Thyrogen injections in preparation for the dose.

What is Thyrogen?  Allow me to explain...

My blog is not sponsored, I swear.

For decades, the standard RAI (Radioactive Iodine) treatment went like this: for about 6 weeks prior to receiving the RAI dose, a person would have to completely stop taking their synthetic thyroid medication.  In some cases, people would be prescribed a different medication (Cytomel - T3), which would help soften the blow of withdrawing from the hormones, but even then, they'd have to fully withdraw for that right before the RAI.

As the weeks progressed, patients would experience the symptoms of hypothyroidism, which would get worse and worse over time.  The thyroid controls the body's metabolism.  Without its hormones, a person's metabolism basically shuts down.  The bottom line is that food no longer gets converted into energy; it just gets stored as fat.

The symptoms of hypothyroidism include: fatigue, increased sensitivity to cold, constipation, dry skin, unexplained weight gain, puffy face, hoarseness, muscle weakness, elevated blood cholesterol level, irregular menstrual periods, muscle aches, joint pain, thinning hair, slowed heart rate, and depression.

Jackie, please don't even try to fathom hypothyroidism.

But what was the point of all this suffering?  Did endocrinologists just like making thyroid cancer patients squirm?  

Well I can't speak for all endocrinologists, but I'm sure for most the answer is no.  The reason is simple(ish).  Withdrawing from thyroid hormones causes Thyroid Stimulating Hormone (TSH) levels in your blood to increase.

Wait, what is TSH you ask?  Well I'm about to get biological on yo' ass.

That sounded weird.  But I'm still going to do it.

It all starts with your pituitary gland, aka "The Master Gland," according to nerdy medical types.  The pituitary gland releases TSH within a sort of negative feedback loop.  If it can't detect enough thyroid hormone in the blood, then it releases TSH as a sort of call to action to all thyroid cells in the body, as a signal to take whatever iodine it has and convert it into thyroid hormone (T4).  TSH does nothing for the body in and of itself, other than "wake up" thyroid cells.

Because I've been taking levothyroxine this whole time, that means my pituitary gland has been tricked into thinking my non-existent thyroid is producing enough thyroid hormone to keep my body going.

So back to what started this whole conversation: why elevate TSH?  Well, when you take the radioactive iodine dose, you want any remaining thyroid cells in your body to take it in ASAP.  Having starved them of iodine for 2 weeks on the LID, having increased TSH in your blood is yet another (and the most important) thing that will signal to your thyroid cells that they need to start working overtime.

Following this logic, the best way to raise TSH in your blood is take the blindfold off your pituitary gland, make it realize that you are severely deficient in thyroid hormone, and therefore cause it to desperately release TSH into the blood.

Going hypothyroid, or going through "Hypo Hell," as many people call it, was the way to do this.  Until Thyrogen came out.

The sweet, sweet nectar (brought to you by the Genzyme Corporation)

Although it had been used in Europe for years prior, the US FDA approved Thyrogen for use domestically in late 2007.  Once it was in use, there were shortage problems as recently as 2011, but it now appears to be in adequate supply for mainstream use.  Thyrogen synthetically raises TSH to levels necessary prior to RAI treatment, meaning the patient does not have to withdraw from thyroid hormones.  HOLLAH!!!

Captain Jean-Luc Picard loves thyrotrpin alfa.

Thyrogen is administered through a series of injections on consecutive days.  On Day 1, you get your first injection.  On Day 2, you get your second injection.  And then on Day 3, you receive your RAI dosage.  All of this has to happen consecutively.  In the butt.  Yes, you heard me right; the injection occurs on your buttocks.

That's all I have to say about that.

You know what, if getting shot in the buttocks means I don't have to withdraw from my medication, then I'll take it!

That's more like it, Oprah.

So that's what I have to look forward to.  I'll be off of work again starting this Wednesday, the first day of Thyrogen injections.  That'll give me time to get ready for my week of isolation.  Since I have to continue the LID for 2 days after my RAI treatment, I have to make sure I go to my parents' house stocked with low-iodine food to last me through the weekend.  Plus, I just have to take care of stuff logistically, since I'll be locked away in my room for a week and away from real life.

Excelsior!

-W

The Low Iodine Diet, aka 16 Days of Hell

Ok, I'm being dramatic.  It probaly isn't "Hell."

After binging on seafood and meat this week, the day has come for me to start the Low Iodine Diet (LID).  A dark, dark day indeed.

In order to explain the Low Iodine Diet, I will start with a biology lesson.

Not what I meant, Sweet Brown.

The thyroid gland is pretty much the only gland in the body that makes use of iodine.  Iodine is the raw material for what thyroid tissue converts into thyroid hormones, which the body needs for purposes surrounding metabolism, among other things.  I'll probably discuss thyroid hormones specifically in another post down the road.

In any case, in preparation for my dose of radioactive iodine on July 31st, my doctors have asked me to begin the LID exactly two weeks before receiving the dose.  The rationalization behind this is simple: if you starve the remaining thyroid cells in your body of iodine, the one thing that they need to do their job, then the moment I take the radioactive iodine dosage, the thyroid cells will desperately cling on to the first sign of iodine that it can find.  Even if the iodine has radioactivity that is trojan-horsed inside of it.  Once those thyroid cells cling on to the radioactive iodine and try to break it down, the radioactivity will go to work and destroy the cell.

However, if I continue to consume iodine in the lead-up to the radioactive dosage, then it is possible that some of the radioactive iodine will pass over any thyroid cells that already have iodine in them.  And we don't want that, now do we?

Grumpy Cat doesn't like cancer.

Hence, you have the LID.

In all of my research leading up to this, the LID is pretty confusing.  First of all, there are many cases of doctors who don't believe in it and don't have their patients do it.  A few studies even seem to try to prove that it isn't effective (http://press.endocrine.org/doi/abs/10.1210/jc.2009-1624).  However, the rationale behind it is logical, and going on a 2-week diet seems like a small sacrifice to destroy cancer, so I won't even go there.

Then, there's the length of time.  My doctors have prescribed a 2-week LID, but other people have done 3 or more weeks.  I'm no doctor, so I'm going to stick to my orders and do 2 weeks.  Well actually, 2 weeks and 2 days.  They want me to stay on it 2 days after the radioactive dosage, just to give my thyroid cells more time to absorb.

Then, there is the diet itself.  There are tons of resources online devoted to the LID, but many of them seem to conflict with each other, which makes it hard to perform any research.  I've done my best to sort through the noise...while there are tons of intricacies to the LID, I'll do my best to spell out the major rules.  In the end, it is a LOW iodine diet, and not a NO iodine diet.  Little errors here or there won't necessarily hurt.  In fact, since there are doctors that don't even prescribe the LID and still have success stories under their belt, it's hard to even say if ANY errors will hurt.  But oh well, ahead I shall charge.

- No IODIZED salt

This is the biggest and baddest rule, but it's important to note the word IODIZED.  That's why I put it in caps.  Most kosher salt is not iodized, so it is fair game in the LID.  So is any salt specifically designated as non-iodized.  Many people mistake the LID for a low-sodium diet.  Not the case at all.  However, this is the rule that pretty much prevents me from eating out.  There's no way to know what kind of salt gets used in a restaurant, or in processed foods in general.  Therefore, all self-prepared foods from here to the end.

Interesting side note: most table salt is iodized in the US as a result of the observation of severe iodine deficiencies in the past.  There was a movement in the US in the 1920s to iodize salt as a result of a problem with goiters, which are enlarged thyroid glands due to iodine deficiency.  Ever since this was done, the incidence of goiters has been significantly reduced.

- All seafood, and anything from or derived from the sea (e.g. seaweed, sea salt)

Oh, this one hurts.  Anyone who knows me knows how much I love seafood.  On most days, I prefer it to any land-based proteins (I'm looking at you, beef).

All I see is iodine.

Iodine occurs naturally in the ocean/sea, so as a result, I cannot consume any of the creatures depicted in the picture above.

Seaweed-based ingredients can sneak into a lot of things, which makes the LID tricky.  For example, did you know that most almond milks contain an ingredient named carrageenan, which is derived from seaweed?  So no almond milk for me, which brings me to my next no-no...

- Dairy

That's right.  Milk, cheese, etc.  None of that.  I thought about replacing milk with almond milk, but it seems like all almond milks contain either carrageenan or sea salt.  Milk chocolate?  Get out of here.  My yogurt that I have every morning for breakfast?  Say goodbye.  Milk and cereal?  Hold the milk.  Butter?  You better believe it's not butter.  Anything and everything dairy goes out the window.  I have to act like I'm lactose intolerant.

- Egg yolks

Eggs contain iodine, almost entirely in the yolk.  Anyone who knows me also knows that I also love the living crap out of eggs.  This one sucks.  However, I'll get by with my good friend Costco.  Gotta avoid any foods with egg listed as an ingredient, too.

My new best friend.

- Soy

Yup, you heard me right.  The incognito building block of the typical American diet is out of the picture.  You always read about how soy gets used as fillers in various processed foods.  Well, I'm about to learn the hard way.  It's OK, I guess.  I've heard having excess soy isn't good for guys due to what it does to estrogen production.  I don't really want to have breasts anyway.

So how am I going to survive?  Well, luckily for me, in the past I've tended not to have a problem with eating repetitively, especially when trying to lose weight.  In addition, in a huge clutch move, Trader Joe's has asserted that any time salt is listed as an ingredient in its self-branded food, it is non-iodized salt, with the only exception being if they list "sea salt" specifically.  I used to really like TJ's, but I have a feeling I'm about to fall in love with them now.

So, the following meals are going to become staples to my diet.

- Oatmeal, with honey and fruit
- Egg white omelettes, with fresh veggies
- Whole wheat pasta, with marinara/pesto sauces from TJ's
- PB&J sandwiches (Low-sodium Ezekiel brand bread, unsalted almond butter, blackberry preserves)
- Unsalted Kettle chips (I may Kosher-salt them myself)
- TJ's unsalted corn tortilla chips, with TJ's hummus
- Unsalted nut mix from Costco
- Eating my own hands (I may Kosher-salt them myself)

That's that.  LID commences today.  Wish me luck.  Next time you see me, I may not have my hands anymore.

-W

For anyone interested in more information, here's some literature I found online about the LID that seems to be from a reputable source:

Thyroid Cancer Surviver's Association (ThyCa) LID Page:
http://www.thyca.org/pap-fol/lowiodinediet/
This site has a low-iodine cookbook with recipes, as well as LID guidelines.

National Institute of Health Clinical Center LID Guidelines:
http://www.cc.nih.gov/ccc/patient_education/pepubs/lo_io_diet.pdf
The NIH is a reputable source of info in my book.  This has LID guidelines, as well as a list of brands and foods that they have verified do not contain iodized salt.  This is dated 2012 though, but that's the latest version I could find, so hopefully this info isn't outdated.

The Low Iodine Diet Blog:
http://thelowiodinediet.blogspot.com/
A popular site that I've seen many people link to as a source of info.

Thyroid Cancer Canada (Thry'vors) Winter 2011 Newsletter
http://www.thyroidcancercanada.org/userfiles/files/Winter_2011_English_final_web.pdf
An interesting article where the investigate and compare the various LID rules out there, and try to debunk some as myths.  An interesting read, despite its Canadian-ness.  Keep in mind that a lot of the food manufacturing rules and regulations they discuss are Canada-specific.

Calm Before the Annoying Storm

It's been pretty quiet ever since I went public on Facebook with the blog, in terms of life events.  I've gotten tons of positive and supportive messages, which has been really nice.  Another side effect (which has been very nice and encouraging) is finding out about friends/family of people I know that have had PTC or other thyroid issues as well.  People are nice.

Adjusting to the new hormones has been OK.  Entering the fourth week after surgery, this is about the time you'd expect all of your natural thyroid hormone (from before the thyroid was removed) to fade away.  I went back to work on Monday, July 6th and started to feel a bit drowsy.  It was probably attributable to the fact that I was back at my desk job as an accountant, but it's also possible I might be slightly under on my thyroid medications.

In addition, I started to develop a problem with acid reflux.  I've never had a problem with this before, and is was resulting in chest pains, which were a bit scary for a thirty-year-old male like myself that had never had any heart/chest problems in the past.  An EKG test showed my heart was in good working order, so after a Prilosec prescription, things seem to start getting back to normal on that front.  I'm getting old.

I also started becoming aware of my own heartbeat when lying or sitting down.  Like I could feel and hear my own heartbeat more.  I suppose this qualifies as "palpitations," which can be a side-effect of an incorrect dosage level of thyroid hormone.  Or I could just be getting old.

I want to be just like Gran Torino Clint Eastwood when I grow up.

When a person's thyroid is removed, doctors have to make an estimate in terms of what dosage of synthetic thyroid hormone to give you.  Since it takes time for the body to adjust, you need to be on the same dosage level for about 4-6 weeks before you can draw blood, test the hormone levels, and adjust the prescription as necessary.  After contacting my endocrinologist, she asked me to come in this week to do an initial blood draw.  It's a little early, but she wants to start checking my blood to see if there are signs of a need for adjustment.

Thanks, Dr. Fry.

Other than that minor medical stuff, everything else has been good.  I spent much of the past weekend with Emily, having a nice brunch on the coast.

Catalina Island in the background.  Swordfish melt and lobster roll in the foreground.  Foreground wins.

Once Sunday hit, it was time for me to go grocery shopping.  But not just any kind of grocery shopping...I went went LOW IODINE grocery shopping.

I'll probably devote a whole entry to the Low Iodine Diet (LID) later on, most likely once I start it, but in summary, in anticipation of the radioactive iodine treatment I'll be receiving on July 31st, I have to spend two weeks on the LID.  The rationalization is this: if you starve the remaining thyroid cells in your body of iodine, then once you take the radioactive iodine it'll be more effective, and the chance that the remaining thyroid cells absorb it increases.

Stupid cells.  Stupid, gullible cells.

So, I went to Costco and Trader Joe's, buying various groceries that were low-iodine friendly.  Since it can be difficult to discern what processed foods or restaurant-prepared meals contain iodine, cooking for yourself becomes the norm on the LID...as does neurotically examining the nutrition and ingredients label on everything you buy.  As you can imagine, the LID can be pretty annoying.

I don't start the LID until Friday, July 17th, but I didn't really want to bother going to the grocery store this week.  Especially since I had BIG PLANS.   Before going on the LID, I decided it would be prudent to go on an HID.  HIGH Iodine Diet.  Hollah.

On Monday night, I will be going to the Boiling Crab with several of my friends.  Seafood is my favorite.  It is also strictly verboten on the LID.

F U, LID.

Then, this coming Wednesday, I will have my final (temporary) farewell to dining out with a visit to the friendly neighborhood meat factory, aka all you can eat Brazilian BBQ, aka Fogo de Chao.

When you play the Game of Meats, you win.  That's it.

Most people lose weight on the LID.  I figure all this eating will give me incentive to do that :)

Oh, also, the incision has healed quite nicely!  The incision is actually below my typical shirt collar, so it's not even visible unless I pull my collar down.

Graphic content ahead, viewer discretion is advised.

My second mouth.

-W

IPO

So after much debating, I've decided to go public with the blog.

I think one of my hopes is that someone who is going through the same thing will find it during a Google search, much like I found several other people's blogs during my whole ordeal.  I think my reaction to crises like this is to fill my head with as much knowledge and research as possible in an effort to calm my nerves.  So hopefully what I've written can be an anecdotal source of knowledge about PTC, and about what it's like to get treated for it and survive it...and to learn that it's not all that bad!

Also, I don't really feel like updating everyone through Facebook on the regular.  The sheer world-altering importance of my plight would only get lost amongst postings about Greek debt and how much Donald Trump hates Mexicans.

This suit looks wrinkled...it could use a little...IRONY.

But yeah, over the years I've grown to use Facebook less and less to post about my life.  So I figured, if any of my friends or family wanted to learn about how my life was going, they could just come to this blog, and those that don't care don't need to get spammed with information about how my neck scar looks, know what I mean?

In any case, this is the first post since I've made the blog public, so...welcome, I guess?  If you want to read about my whole journey so far, then just browse backward and read my previous posts!  

-W

To Iodine, or Not to Iodine

So, pathology had put me pretty square into the low-risk category.  With my largest tumor being exactly 1cm, most doctors would heavily consider not proceeding to the radioactive iodine phase.  However, my surgeon and my endocrinologist both considered me to be at a slightly higher risk due to my family history.  While no one in my direct line had thyroid cancer, my aunt (mom's sister) did.  In addition, there were 5 other instances on my mom's side, all linked to my grandmother, who had either thyroid cancer or thyroid removal due to goiter.

So, needless to say, I couldn't escape this guy:

Mr. DNA, where did you come from?

Genetics were not on my side.

I was definitely in a grey area in terms of whether or not to do the radioactive iodine (RAI) treatment.  So after doing my own research online, and taking the advice of my surgeon and endocrinologist into heavier consideration, I decided to proceed with a low dose of iodine.

I may need to back up and explain what this treatment is.  Basically, it goes like this.  The thyroid gland and thyroid tissue is the only tissue in the body that absorbs iodine, which is found in iodized salt and all seafood, among other things.  It uses this iodine to produce the hormone thyroxine, which is used to regulate your metabolism.  A surgeon can't possibly get 100% of all thyroid tissue out, as some needs to be left behind when it is attached to important structures/glands in the neck, to avoid damaging them.  In addition, there is no way the surgeon can get rid of any individual thyroid cells, whether cancerous or not, because he/she is not a magician.

Therefore, for decades, the standard treatment has been for the patient, once the thyroid gland is removed, to take a pill of iodine that has been laced with radioactivity (I-131).  Typically, the patient will do a low-iodine diet (LID) for 2 weeks prior to the dose, so that any thyroid cells that are still alive are starving for iodine.  Once the pill comes in, all thyroid cells take in this radioactive iodine, which then works over the next few months to kill that thyroid cell.  If the cell is cancerous, then good riddance.  If not, then oh well, there was no use for the remnant thyroid tissue anyway.

All the doctors I had spoken to had said that there wasn't necessarily any disadvantage to delaying the RAI to later down the road, but my intuition seemed to think that getting the iodine sooner would prevent any remaining cancer cells (if any) from growing and becoming stronger.  In addition, not having the RAI has one slight disadvantage for the years of testing and bloodwork that I was anticipating.

The easiest test to see if thyroid cells still remain is a blood test to test for Thyroglobulin (Tg).  If it increases or spikes, it means that thyroid cells are still around, and therefore there is the distinct likelihood that thyroid cancer has returned.  If you do RAI, then you expect this number to baseline at zero or near-zero.  If you don't, then you have to establish a baseline, and then any differences/spikes in the numbers are open to more interpretation.  At least, I think this is an accurate summary based on what the doctors have told me.

Therefore, additional peace of mind comes with doing the RAI, so that any changes in bloodwork in the future can be interpreted more easily.  In addition, due to more recent research, there has been a movement toward using smaller doses of RAI, since it has been found they can be as effective while exposing the patient to far less risk/side-effects.

On the flip side, research has shown that having RAI can cause a fraction of a percentage increase in the chance of developing a secondary cancer down the road, specifically salivary gland cancer and leukemia.  So, doing RAI isn't without its risks of course.  Swallowing radiation rarely comes risk-free.  Just ask this guy:

But weighing my options, I decided to proceed with the RAI.  I met with Dr. Pawan Gupta at UCLA Nuclear Medicine (real department name), and he spend almost an hour with me walking me through the pros and cons of the RAI.  At the end of our meeting, we made the appointment on the calendar.  July 31, 2015: the day that I become a superhero.

-W

Recovery...and Final Pathology

It's been a while since I've written...I haven't posted anything since recovery began!

Recovery went pretty well...I stayed at my parents house for a week and change after the surgery, during which I had many family and friends visit, which was nice.  My sister came down with the whole family, which was really nice too.  Between resting, US Women's World Cup games, the NBA Draft, and various other things at home, I didn't quite get as much done as I thought I would.  While I read through most of the graphic novels that I brought home to read through, I didn't really play any tablet games or watch anything on Netflix...that's a fail, I guess.

Over the course of the week, my neck and its range of motion improved, and I was able to drive for the first time exactly 1 week after my surgery.  I took my mom to see Jurassic World...it was pretty good!

The only thing missing from Jurassic World?  More Goldblum.

The recovery process was marked by a few doctor's visits:

1) First post-op with my surgeon

Dr. Sigari took a look at my neck and the bruising and felt things were progressing nicely.

2) First post-op with my endocrinologist

Dr. Winikoff drew some blood to make sure my calcium levels, as well as other things, were looking normal.  They were!  Too early to tell if my thyroxine hormone levels are correct though, as it takes several weeks for the levels to normalize after commencing thyroid hormones (Note: I am on generic Levothyroxine (Manufacturer: Mylan) of 125 mcg.)  But besides an extreme amount of hunger that only lasted the first few days after surgery, I've been feeling fairly normal, which is good (and I know is not always the case).

3) Second post-op with my surgeon

This was the big one, as the final pathology report was in.  It's official: T1a NX MX!  USA!  USA!

Wait, what does that mean?  Long story short, I had Stage I papillary thyroid cancer.  Here's what all those letters and numbers mean:

T1a: T signifies the size of the tumor.  Unless the biopsy was a false positive, there was no way I was scoring a T0.  T1a is the next size up, meaning the tumor was 1cm across (or smaller).  This is good!

Just FYI, here are the next steps up.  T1b means the tumor is between 1cm-2cm across.  T2 means the tumor is between 2cm-4cm.  T3 means the tumor is larger than 4cm, or it has just begun to grow into tissues outside the thyroid.  T4a means the cancer has grown extensively into surrounding organs/tissues (moderately advanced), while T4b means the same level of growth as T4a, as well as growth into the spine or nearby large blood vessels (very advanced).

NX: N1 signifies if the cancer has metastasized to the lymph nodes, something that doesn't necessarily cause a significant decrease in survival rate in cases of PTC, while N0 means no metastasis to lymph nodes  I received an X because Dr. Sigari didn't remove any lymph nodes during the surgery, as he inspected them and they did not appear abnormal.  In some higher-risk cases, a surgeon will remove these regardless of their appearance, but in my case, going after them came with an increased change of surgery complications, so my surgeon didn't do them.  However, by analyzing the vascularity of the tumor (meaning the proximity of blood vessels connecting the tumor to the "outside world", the pathology report assessed that there there was no vascularity present, which significantly decreased the chances of metastasis to the lymph nodes or other organs/tissues.

MX: M1 signifies if there has been distant metastasis to organs/tissues other than lymph nodes, while M0 means that there was no distant metastasis.  During the surgery, there was no clear metastasis to surrounding tissue, and because of the vascularity test that I mentioned above, the chances of this were also largely decreased.

So I had my staging...what else did the report mention?

"LEFT LOBE: Papillary thyroid carcinoma, classic type, 1cm..."

Right, no surprise there.  Classic type is good though.  There are variants (tall cell, Huerthle cell, insular, etc.) that you don't really want to see on your pathology report.

"...The tumor focally extends to within less than 1 mm from the posterior margin and to within 1mm from the anterior margin."

Whoa.

Me, as cancer whizzes past my face.

The tumor came LESS THAN 1MM away from leaving my thyroid gland.  Had it breached the edge of the thyroid, I probably would have been upgraded in terms of my risk category.  But, it didn't...by 1mm, AKA 0.1cm, AKA an extremely small margin.

My surgeon was very happy about this and said we took care of this at exactly the right time.  PHEW!

Ok, what else do you have for me, pathology?

"RIGHT LOBE: Papillary thyroid carcinoma, classic type, two foci, 3mm and 1.5mm."

Whaaaaaaaat?  Yup, cancer had shown up on the right side of my thyroid, too small for any ultrasound to detect.  According to Dr. Sigari, "multifocal" occurrence of PTC was very common, so this fact wasn't particularly alarming, especially since the two occurrences were so small.

Those micro-carcinomas did come within 2mm of breaching my thyroid gland though.  By sheer luck (or lack thereof), all 3 of my tumors happened to be extremely close to the edge of my thyroid.  Not necessarily bad in and of itself, but it probably meant that I wouldn't have been afforded the luxury of finding this years down the road, as many people tend to.

On a funny side note, the pathology report described my thyroid tissue as "red brown, firm and beefy."  That's right, I had a beefy thyroid.

You heard me, Khaleesi.

So that was it.  While a final scan after my radioactive iodine will give a more conclusive decision on if I had any metastasis, the results of the pathology report were overwhelmingly positive.  Good stuff!

Here's some photos of my progress during recovery:

2 days after surgery...note the minor redness above the tape, which turned into...

...this.  3 days after surgery.  Looks worse than it felt.

I also grew a "beard."  I never go longer than a week without shaving, so I figured this was a good opportunity to try it.  I went 2.5 weeks without shaving, and my "beard" was pretty pathetic.  Worst part is that I forgot to take a picture right before shaving.  I'll never be able to remember it now.

-W