That. Just. Happened.

I thought it would be a fun exercise to write out all of the appointments I've had since this whole thing started, now that I can start to look back and reflect on everything.  For someone who is about to go through this, maybe it'll give you an example timeline of what to expect.

Here you go, my remembrance of 2015 (so far).  Every single line, except for the one that says "via phone," represents an appointment at a doctor's office or hospital:

01/07/15: Initial Primary Care Physician (PCP) visit, received diagnosis of thyroid nodules
01/08/15: Ultrasound of thyroid nodules, received diagnosis of "suspicious for thyroid cancer," referred to surgeon
01/12/15: Ear, Nose & Throat (ENT) surgeon consultation, referred to radiologist for ultrasound-guided Fine Needle Aspiration Biopsy (FNAB)
01/21/15: Radiologist performed FNAB
01/27/15: Received biopsy result of "benign," via phone
02/05/15: ENT surgeon consultation, instructions to repeat ultrasound in 3 months
04/17/15: Repeat ultrasound of thyroid nodules
04/28/15: ENT surgeon consultation, thyroid nodules diagnosed as showing "minor growth," referred to radiologist for second FNAB
05/14/15: Radiologist performs second FNAB
05/21/15: ENT surgeon consultation, received biopsy result of "Papillary Thyroid Carcinoma"
05/29/15: Endocrinologist (Endo) #1 consultation
06/01/15: ENT surgeon #2, second opinion
06/03/15: ENT surgeon, pre-operative consultation
06/03/15: Endo #2 consultation
06/04/15: Endo #3 consultation (ended up choosing this one)
06/08/15: PCP pre-operative physical exam and blood draw
06/18/15: Total Thyroidectomy
06/23/15: ENT surgeon, first post-operative exam
06/29/15: Endo, post-operative exam and blood draw, received Stage 1 diagnosis
07/01/15: ENT surgeon, second post-operative exam and bandage removal
07/02/15: Nuclear Medicine, consultation
07/14/15: Endo, blood draw to check hormone levels
07/21/15: ENT surgeon, third post-operative exam
07/29/15: Endo, first Thyrogen injection
07/30/15: Endo, second Thyrogen injection
07/31/15: Pre-treatment blood draw
07/31/15: Nuclear Medicine, received 52.1 mCi of Radioactive Iodine I-131 (RAI)
08/04/15: Post-treatment blood draw
08/05/15: Nuclear Medicine, Whole Body Scan (WBS)
08/10/15: Received WBS result of no metastasis

I'm not even upset.  I'm actually impressed.

I thought the list would be long...but not that long.

Granted, it's a little bit longer because I decided to "audition" 3 different endocrinologists, and get a second opinion with another ENT, even though I was already very happy with my primary ENT surgeon.  And the fact that I got an initial false negative diagnosis also lengthens things a bit.  But yeah, that is a glimpse as to how my 2015 has been so far.  I hope yours has had less doctors' appointments! :)

-W

All Clear

It's been a while since I've posted.  It's because I've been waiting for the results of my whole body scan.  I'll get to that in a second, but first I'll try to catch up on what's been going on.

On Tuesday, I had my post-RAI blood draw, and then on Wednesday, I had my big Whole Body Scan (WBS).  I got to UCLA Santa Monica at around 7:30am, and waited a bit before getting in.

The whole scan took 35 minutes.  I just lied there, trying not to fall asleep, as the machine did its thing.  The scanner pretty much came within about an inch of my face.  I don't tend to get claustrophobic, but it definitely took a few minutes to get used to it.

"I'm not touching you!  I'm not touching you!"

The scanner spent about 10 minutes at the positive you see above, and then it slowly, millimeter by millimeter, started moving down toward my toes, with robotic whizzing and whirring sounds going on the whole time.  I could hear the nurses moving around while the scanner was going, and could see them in the corner of my eye sometimes, but I wasn't allowed to move, so I just had to sit there in awkward silence.

It finished up, the nurse shook my hand, and I went home.  That was it.  They didn't share the results with me, even though I had heard that some people get the results immediately.  Oh well, no one was expecting any surprises, so I thought nothing of it and went on with my life.

On Thursday morning, my quarantine was lifted!  While I had been eating meals with my parents, I had been limiting my total time with them each day to about an hour, for their safety.  But Thursday morning was the end of it all.  I went to see Ant-Man with my mom, which was fun.  The next day I took her to see Mission Impossible: Rogue Nation, which was pretty solid.

I heard Tom Cruise filmed this stunt without any wires.

I spent the weekend with family, celebrating my cousin's birthday.  One of my cousins even gave me this pin:

Mini Thyroid!

It was from a company named I Heart Guts, which makes cute little merchandise based on body organs.  It's pretty hilarious, I highly recommend it (iheartguts.com)!

I returned to work yesterday (Monday), getting caught up on the work that I missed.  However, the biggest news came in the afternoon, when I got a message from my endocrinologist:

"The result was as expected - residual tissue in the thyroid bed which always remains after surgery, and no distant metastases."

Woohoo!  But wait, what does it all mean?  Well, allow me to explain.

The whole body scan works to detect where any remaining radioactive iodine is in the body after taking the RAI.  It produces an image, showing the location of any remaining radioactive iodine.

The one place you would expect to see light up would be the "thyroid bed," which is the location of where the thyroid used to sit.  This is because it is impossible for a surgeon to remove 100% of all thyroid tissue.  It would be too difficult to do so without compromising the other structures in the neck (vocal chord nerves, parathyroid glands, muscle, etc.).  Therefore, the RAI goes straight to any remaining tissue there and works over several months to kill off what is left.

Other places that can light up during this scan are areas of the digestive tract, the salivary glands, and the bladder.  The digestive tract takes a hit (although hopefully minimal) since this is where the RAI pill first went when you take the dose.  The salivary glands are also obviously affected, since I've mentioned before that they can take up some of the RAI.  The bladder is also expected to show some traces, since as I've mentioned in previous posts, almost all of the excess RAI that is not taken up by thyroid cells is excreted through urine.

A clean RAI scan could look something like this:

Note: Sample from internet, NOT my scan.

What you're hoping not to see from these scans is metastasis to other organs.  The most common locations for metastasis are lymph nodes, lungs, and bones.

Sample scan shows lymph nodes and lungs "lighting up," which is no bueno.

However, while you don't want metastasis, it's not necessarily the worst thing in the world in many cases.  This is where the whole "thyroid cancer is the most forgiving" phrase can be a good thing.

If thyroid cancer metastasizes to a distance location, like the lungs for example, it does NOT become lung cancer; it is simply metastatic thyroid cancer in the lungs.  They are cancerous thyroid cells that moved into the lungs, and the treatment would still be radioactive iodine.  And if the lungs light up during the scan, then it means that the RAI found the thyroid cells, and are now actively working to kill them.

Obviously, metastasis is scary, and there are exceptions when the RAI isn't able to attack them, but for most people, the RAI is sufficient.  Maybe a second dose is needed down the line, but had my lungs or other distant organs shown signs of metastasis, the treatment plan would have been to wait 6 months for the RAI to do its job, and then re-scan.

However, I got the ALL CLEAR!  

Thanks, Captain Solo.

To be honest, the news is almost a bit anti-climactic.  As arduous and challenging as this journey has been so far, I guess I thought getting this message would make me break out into song and dance.

J. C. V. D.

But I guess I just feel more...content?  Relieved?  Not sure what the word is.

Perhaps it's because thyroid cancer is one of the peskiest cancers around, with an overall recurrence rate between 20-30%.  However, statistics that I've seen online for Stage 1 has a recurrence rate more like 2-5%, so I'm probably in the clear.  So maybe I'm trying to prepare myself for the long haul?

I guess I've started to reflect on everything that's happened to me, all of the ups and downs, all of the support that I've gotten from family, friends, co-workers, and even strangers.  Maybe this is the proverbial shock that comes after experiencing something crazy, and everything will start to hit me later on.  In any case, I believe a celebration is in order.

I'm sorry, Charlie Murphy.

Going forward, I'll have blood tests and ultrasounds to monitor everything and make sure that it doesn't come back.  For the first year, the tests will be every 3 months.  I think the standard is about 5 years of monitoring before a doctor is willing to say the word "cured."  

I'll write more about blood tests and what to look for in results down the road.  But for now, "remission "is the word, I guess.  

-W

I can't wait for Paul Blart 3: Rogue Nation.

Shower, Pee, & Sour Candy

The end of my most radioactive period approaches.  So, seems like a good time to check in with an update.

CAUTION: DO NOT APPROACH!

There are essentially two phases to the period after taking the RAI dose.  The length of time can vary depending on the dosage rate, but my plan of attack is specifically for the 50 mCi that I received.

Immediately after coming home, there are things that need to be done for the first 24-48 hours, according to most literature.  I decided to carry these things on until Sunday night, which would put me more at 72 hours.  They include:

- Constant drinking of water

While the point of RAI is for the iodine to latch on to all thyroid tissue, it goes without saying that not all of it will be needed.  In fact, a majority of it won't be needed.  So, what does the body do with all of that excess RAI?  It excretes it through the kidneys, of course.  Therefore, the first thing you've got to do after taking the dose is pound water.  And pee it out.  ASAP.

Of all the excess radioactivity that is expelled out of the body, urine is the one that harbors the most radioactivity, by far.  Therefore, keeping the body hydrated so it can pee out the radioactivity is key.  As soon as you gotta go, then go.  No use keeping all that radioactivity swimming around in your bladder, which is a risky play to say the least.  And you need to keep any of that urine from splashing around.  For guys, that means peeing sitting down.

It's too bad, I really enjoy using the bottom right method.

Having your own bathroom that you don't share with someone else is key during the post-RAI isolation, which I luckily have at my parents house.

- Suck on sour candies

After urine, saliva is the next place that radioactivity can collect, putting the salivary glands at an elevated risk.  Therefore, the best thing you can do is to keep the glands producing saliva, and continuously pumping the saliva out.  If not, besides the obvious risk of radioactivity sitting idly in your salivary glands, you risk salivary gland swelling/tenderness, salivary gland stones/blockages, etc.  So, I purchased some sugar-free lemon candies from the Dollar Tree, as well as some Ice Breakers Sours (important to avoid Red Dye #3, as I am still on the LID), also sugar-free.  Figured if I was going to be tearing up my mouth with sour candies, might as well not be bombarding my body with sugar too.

Sadly, I could not find these at the supermarket.

My doctor advised me to start eating sour candies 2 hours after the RAI (I wasn't allowed to eat anything until 2 hours after the RAI, so that made sense), and to do it every few hours after that for the next 48 hours.  While most doctors recommend this, there have been a few studies showing that the use of sour candies should be delayed, not starting until 24 hours after the RAI, since they found it actually increased radioactive uptake into the salivary glands.  Here is a link to one such study: http://jnm.snmjournals.org/content/46/12/2119.full.pdf.  However, according to the research that I did, there is no conclusive evidence either way, so generally the consensus is to do it right away.  And that's what I did.

I've started to get a bit of tenderness/swelling under the left side of my tongue, but other than that, I think I've been OK on the salivary gland front so far.

- Shower...a lot

The next place radioactivity can be expelled is through sweat and body oils.  It is because of this that my doctor recommended washing my clothes for the first few days separately, and then sequestering them for 2 weeks to allow all of the radioactivity to die off.  Instead, I just wore old worn out clothes with the intent of throwing them away.

But, because of the trace radioactivity from sweat/oil, it is recommended that you shower at least 2x a day.  So I did that, and felt fresh and clean.  Although, with California in a draught, I felt a bit wasteful.

The struggle is real.

In addition, I have been eating off of paper plates with plastic utensils, and throwing them away afterward.  I figured that was safer than spreading radioactivity all up on my parents' kitchen sink.

- Isolation

That's my soundtrack for the next week.  While I've been talking about radioactivity as some kind of residue that exists in bodily fluids, there is also the simple danger of proximity.  For the weekend, I've had to keep at least 3 feet away from everybody, other than quick, fleeting moments.  So, while I've kept my bedroom door open to speak with my parents occasionally, I have definitely not been hanging out with them.

Starting tomorrow morning, I can be spend about an hour with people as long as they are at least 6 feet away from me, with Thursday morning being the official lifting of all proximity restrictions.  Except for when pregnant women or children are involved.  Literature varies as far as the safety time for that, but I'm going to go with the most that I've seen for my dosage level, which is 14 days.

So, it's been a weekend of web surfing, reading, eating and drinking water by myself in the room I grew up in.  I thought it'd be a nice reset, a chance to just take it easy.  But I'm getting kind of stir crazy, to be honest.

However, in addition to all the milestones that I am going to reach this week above, there is a big restriction that ends tonight.  Starting tomorrow morning, I am no longer on the low iodine diet!  Woohoo!

You said it, big guy.

That's pretty much it, my gameplan for the week.  All restrictions (other than staying away from children and pregnant women) lift starting Thursday morning.  Until then, it's just more hanging out by myself.

Next big thing is my post-RAI full body scan on Wednesday morning.  It's actually potentially the last big thing.  By scanning my body to see where the radioactive iodine has collected, that's where you can pretty accurately check if the cancer had metastasized anywhere else, like the lymph nodes, lungs, bone, etc.  While all pathology and indications so far has concluded that such spread hasn't occurred, this will provide final conclusiveness.  I'm pretty calm about it, since like I said, all the signs look pretty good, but I'll probably be nervous that morning.  

Wish me luck!

-W