Time for a Checkup

This week was another round of labs and doctor visits for me, which also meant another round of bruises left behind from the needles. I seriously bruise like a peach! I'm okay with these little remnants of my time in the lab though, because I know how important the results are to my health. Yesterday was my meeting with Dr. Thomas. The first thing we discussed was my TSH, which determines whether or not my current dosage of my thyroid medication is working properly.  Because I was diagnosed as Stage I with a lower risk of recurrence, my results this time around of 0.4 was a great number. Patients who are not free of disease or who have a higher chance of the cancer returning usually need to be suppressed to a lower level than that.  He is also hesitant to try and suppress my levels any more because of the heart palpitations I have been having. So, I'll keep on truckin' at 100 mcg!

Another very important test that they did was on my thyroglobulin (try saying that 3 times fast), otherwise known as the tumor marker. The results on this one help us to see if there might be any cancer trying to return. Ideally, the thyroglobulin levels should be as low as possible (close to zero) because I should have no cancerous cells left. This time around, mine was less than 0.1, or barely detectable. As my doctor monitors me over time, those levels should remain constant. If there is an increase, that is a signal that the cancer is recurring.  

While my physical health has been pretty great lately, I have noticed some new patterns in my moods and in the way I handle stress.  I have noticed an increase in feelings of anxiety and my emotions have been on a bit of a roller coaster lately. I talked with Dr. Thomas about these symptoms to try and get to the bottom of what is going on. There are a few things that might be happening. One possibility is my medication still trying to regulate all of the hormones and balance everything out. Another is just more stress than usual combined with the fact that it's winter. Or, it could be that (even though I may not voice it out loud) there is still a fear in the back of my mind about my cancer and the potential of it returning. He said that this last one is fairly common within the first year or two of a diagnosis too. All of this is really good to know because I was starting to feel a little crazy.

What I'm learning through this process is that, for the most part, I just go about my daily life and don't give cancer a second thought. Everything is normal. I feel generally healthy and happy. Life goes on. And then there are weeks like this one that lead up to those lab results. Weeks when I let the fear and worry about my health get the best of my emotions and I just can't deal with it all. If you're around me during those days and I start to act unlike my normal self, would you do me a favor? Just smile and tell me everything is going to be fine.

A Fading Scar and a Blossoming Friendship

There have been lots of things about the past week that have been difficult.  One of the hardest is being separated from my kids.  At this point, it is safe for me to be in contact with other adults (hooray!)...but still not children (boooooooo!) since their little thyroids are so active in helping them grow.  Any radiation they might receive from my treatment could be damaging to their growth.  I returned home yesterday since I am able to sleep in my own bed now, which is great because I can actually SEE my kids (from a safe distance, of course).  But, it has actually been much more emotional for me than I thought it would be.  I can't hug them yet, or kiss their little cheeks, or pick them up when they fall, or snuggle with them on the couch.  It's just so hard. I can't wait until I'm able to do all of those things later this week!!

One piece of good news is that I had my final visit with my surgeon yesterday and he thinks my scar is healing nicely.  I think so, too.

I still have numbness from the top of my scar to my chin, which will hopefully return to normal within the next year.  But, if not...there's really not much anyone can do about it at this point anyway.  I guess that's a small price to pay compared to having a tumor. 

One thing that makes me super cool right now is that I get to carry around this card...

You know...In case I get pulled over for emitting radiation!!  Don't be jealous.

While this week has obviously had its share of hurdles, there has been one bright, sunny spot. I have made a couple of new friends who are fellow travelers on this long, strange thyca trip. I am so truly thankful to be able to connect with other women who can identify with exactly what I'm going through right now.  One friend, I met in person on Saturday since both of us were "glowing" with radioactivity.  Her name is Lindsay, and although we forgot to take a selfie after our relaxing walk together, we decided that if people ask about our scars whenever we're together, we are going to share the story of our nasty gang fight.  Our Bitmojis speak for themselves.

I have also connected via text message with another girl named Laura.  The three of us are planning to meet for breakfast this Saturday, so I am very excited about that and can't wait to meet Laura in person, too!  

I'm Radioactive!

This has been a very important week in my treatment.  This part of the process is called Radioactive Iodine (or RAI) Ablation.  This treatment is specific to thyroid cancer patients because of the thyroid's unique ability to absorb iodine.  Basically, the idea is for the radioactive iodine to seek out and destroy any remaining thyroid cells left in my body, which should ablate those nasty cancer cells too.  I got my dosage of RAI yesterday, so I have spent the past 24 hours or so picturing this happening inside my body:



Extreme?  Perhaps.  But I've had a lot of time on my hands to think about this stuff in the past few days.  Here's a timeline of my week:

Monday:

I was admitted to the hospital for my first Thyrogen injection.  Yep.  They admitted me (bracelet and all) to give me a shot in my hip.  The purpose of this injection is to enhance the uptake of the RAI without having to take me off my daily thyroid medication.  I am SO thankful I was able to take this route because I definitely want to avoid being taken off my Levothyroxine.  I was at the hospital for approximately an hour on this day, which seems like a long time just to get a shot.  But they had to go through the whole list of questions they ask when you're admitted to the hospital, plus I had to wait there for at least 20 minutes after my shot to make sure I wouldn't have any reactions to the Thyrogen.  Overall, it was no big deal at all.  

Tuesday:
Back to the hospital for Thyrogen injection numero dos.  This time, I walked right in and right back out.  I was feeling the effects of the injection though.  They made me extremely tired, and I also experienced headaches and some nausea.  In the grand scheme of things, I'd much rather have that feeling for a day or two than several weeks of fatigue.  

Wednesday:
D-Day.  Time to head back to the hospital and get all sorts of radioactive.  The morning started with a trip to the lab to test my TSH (thyroid stimulating hormone) levels to see if the Thyrogen injections did their job. The goal was to elevate my TSH levels as much as possible to help stimulate any remaining thyroid tissue to take up the radioactive iodine.  The normal TSH range is 0.358 - 3.740 uIU/ml (whatever that stands for), and mine was 155.  So, I'd say I was pretty elevated!!  Pair that with my low-iodine diet, and those little cells should be HUNGRY for that iodine.  I feel ya, little cells.  I am, too.  No, seriously...I'm having dreams about cheeseburgers and milkshakes.

After the lab fun, it was up to the 2nd floor to Nuclear Medicine.  Sounds scary, huh?  I always feel like there should be some deep, spooky voice bellowing that out from the dark of night. Maybe with a sinister "muah-ha-ha-ha-ha" afterwards.  So, off I went to the magical...er...depressing waiting room in Nuclear Medicine, or Nuke Med as my new pals at the hospital call it.  I figure I can use that lingo now, too since I'm pretty much a regular there these days.  This was the darkest, quietest, loneliest place on Earth where I spent about an hour, although it felt like I might die of loneliness and starvation there.  Did I mention that I had to fast for this?  So, there's that.  Here's my view as I sat there (sing it with me, now) -  Allllllll byyyyyyyyyyy myyyyyseeeeeeeeeeeellllllf.

All of that alone time did give me a chance to peruse the paperwork the Nuke Med doctor had asked me to sign during our very brief and very awkward consultation just a few minutes before. Here is the list of my Dos and Don'ts I will be following for about the next week or so. I'm learning that it seems to be a different list of instructions for each patient and each doctor, but I will be playing it safe and following my rules, and maybe even taking extra precautions for a while.

I was scheduled to get my RAI dose at 10:00, but I wasn't able to take it until the lab results came back.  I guess the main thing they needed to confirm was that I wasn't pregnant.  Makes sense - We don't need no radioactive babies roaming around.  At around 11:00, the nurse called me back and said, "Congratulations! You're not pregnant and you get to ingest this radioactive substance into your body!!"  Or something like that.  

She took me to a room that had one of these signs on the door, which was a little unnerving: 

The room was more like a closet, really.  And the rest, my friends, is pretty anticlimactic.  She opened up a container that looked like this...

...and took out a little plastic tube containing the 100 mCi pill I would need to swallow.  She handed me a bottle of water as well as the plastic tube and down the hatch it went!  Then she told me to head on out and follow the instructions the doctor gave me.  And that was it.

I felt weird walking near other non-radioactive people in the hospital. I felt kind of like I was in a game of Frogger.  People would walk toward me and I would step to the side to avoid any direct contact.  I felt like I should be wearing a radioactive sign around my neck to warn people to stay away! It also took a while to find an elevator that wasn't absolutely packed with people.

After I safely exited the hospital, I got in my car and drove myself to my home-away-from-home for the next several days.  My mom and dad's house!  Waiting for me when I arrived were some yummy low-iodine snacks, a beautiful vase of flowers, a coloring book for when I need something different to do, and a warm Snuggie to snuggle up in.  

I can't say that I feel any different after getting my RAI.  I felt a lot of warmth coming from my stomach area for a little bit yesterday, but nothing dramatic is happening.  I just hope that the RAI is doing its job and that this part can be behind me.  Here's a glimpse at what I've been up to so far in the past 24 hours:

Warm snuggie time

Beautiful flowers

Halfway through this book

A Chef Mary low-iodine specialty

Sometimes it's just fun to color!

  

My Diet...Through Poetry

Today marks Day 7 of 8,429 of my low-iodine diet.  Okay, that's an exaggeration.  But it sure seems like it will never end.  I have spent the past week trying to make it seem like a fun adventure, but the truth is that I'm having a really hard time getting through it.  In fact, I have found myself feeling downright grumpy at several points this week.  I miss simple things, like butter and cheese. And it takes every ounce of willpower I have not to sneak bites from that yellow bag of Lays potato chips in the pantry.  I actually LICKED up a tiny bit of pizza sauce that fell off the pizza cutter onto the counter top last night.  It's getting real around here, people. 

The rational part of me is trying my best to stay positive about it because I know this is what's best for my health. So in an effort to keep things upbeat, I have decided to express my feelings about this diet through a series of silly poems.  Enjoy :)

Your Pizza (a haiku)
Longingly I stare
At your pizza topped with cheese
Your plate, it haunts me

What's for Dinner? (a tanka)
I can't have that dish
Far too much dairy and salt
Shall we grill some meat?
Only 6 ounces allowed
With a random piece of fruit 

My Mom (a limerick)
There once was a woman from town
Who didn't want her daughter to frown
She baked up some bread 
So her girl would be fed
Could we please give this lady a crown?

My Mom...Take 2 (another limerick)
There once was a woman named Mary
Whose daughter was banned from all dairy
In a bag she did fill
Some lavosh made with dill
Now this diet seems not quite so scary

Well, wasn't that fun?  No, but seriously.  My family has been so super supportive during all of this, which has made it not as terrible as it could be.  Here is a picture of all the yummy iodine-free things my mom cooked up for me last week (those limericks speak the truth).  It is a huge reminder that I am loved and not alone on this journey.

Recipe Suggestions???

Today I got my RAI treatment scheduled, so beginning Monday, I will be on a low-iodine diet for 2 weeks.  My endo gave me a list of foods I can and can't have during this diet...but I want to do what I can to avoid eating nothing but bananas and rice cakes for 2 weeks.  

I thought I'd see if anyone out there has access to some EASY, but tasty low-iodine recipes or meal ideas that I can add to my menu before I go shopping this weekend.  If you can help, great!  If not, I guess I should look on the bright side - bananas and rice cakes will be a great way to shed a few extra lbs!

Rays of Sunshine

For the past week, I have been kind of laying low.  I have spent a lot of time reading, grading, and binge watching Season 3 of Parenthood.  Oh, that reminds me - I need to add Kleenex to the grocery list this week (I mean, seriously...how do the Bravermans make me cry. Every. Single. Episode.)  It was just the perfect amount of relaxation and "me" time I needed to help heal myself body, mind, and soul. 

I can happily say that, with the exception of a couple of days, I have been feeling better and better every day.  One of the things I was worried about with losing my thyroid was feeling tired and lacking energy because that combo is no bueno when it comes to teaching 5th graders.  I have been super vigilant about how and when I take my medicine each day, so I'm hopeful that the doctor has chosen the correct dosage for me right off the bat.  

Today was the first day since surgery that I really crawled out from my hidey-hole and interacted with other human beings.  And it felt awesome!  I spent the morning with my teaching partner and our amazing students to view their animal habitat projects at the zoo.  It was so good to see them and hug them.  It made me super excited to get back into the classroom next week.  

Then, this afternoon, we decided that we couldn't let the gorgeous fall weather slip away from us, so we took the kids to the park and soaked up every drop of sunshine we could.  It refreshed my spirit and helped me to feel normal again.  It made me realize that, even when life seems gloomy, there are rays of sunshine that I have to focus on.  It's not always going to be easy, and I know I will lose my focus at times, but those rays will always be there.  Here are my rays.

Scars or scarves?

There it is.  There's no way around it.  Thyroid cancer leaves a lasting scar.  A scar that is in a very noticeable place.  As you can tell from the picture, mine is obviously a lot more noticeable right now because it is still healing, but I would be lying if I said I wasn't a little worried about what people will think when they see it.  I know that sounds incredibly shallow, but I have to keep things real here. It's a journey...right?

I especially thought about my scar today because I was scheduled to have my picture taken with the owner of Andy B's, a local bowling alley/entertainment center where we had my son's birthday party over the weekend.  They wanted to take a picture of me for their Facebook page...because I WON A TV!!!  Yep.  Sure did.  But, that's a story for another time. 

Anywho, I fretted about what I should wear for this picture because I wasn't sure if I wanted my visible scar to be seen by thousands of people on Andy B's Facebook page. I could cover it up with a scarf or try and dig up an old turtleneck from the closet archives...or I could just wear what I wanted and not give a hoot.  I opted to give zero hoots, and I've decided that's the attitude I'm going to strive to have during all of this.  

I found the following quote today that really inspired me:

I think I'm going to print it out and tape it to my mirror so I can see it as I'm getting ready everyday. 

Sure, I'm going to wear scarves from time to time because scarves are a great finishing accessory and they're awesome.  But if you see me wearing a scarf, just know that it's not because I'm trying to hide anything.  I'm going to also wear my scar as my latest accessory because it tells a story and it's my own personal reminder about my inner strength.  

Partial...er...Total Thyroidectomy

Surgery day was...weird.  And looooooooooooooooooong. I was told to check in at 8:30, so naturally, I was there at 8:15. I also hadn't had anything to eat or drink since 6:00 the night before. Then as luck would have it, they weren't ready to take me back to surgery until around 2:00, so I got to spend most of my day in what I called the surgery "holding cell" longing for a double cheeseburger, tots, and a milkshake from Sonic. I was hangry, people. HANGRY.  

Keep in mind, my only two previous hospital experiences were on the 5th floor maternity wing where everything was so quiet and calm...and private. There was definitely nothing private about this part of the hospital.  Loud talkers in the waiting room, people scarfing down their McDonald's IN FRONT OF other hangry people who hadn't eaten in hours, hearing Betty's entire medical history on the other side of the curtain.  It prompted me to take this selfie at about half-past-crazy:

When the surgeon finally came back to talk to me about the plan for the day, I was ready to get it all over with. He talked about the plan to only remove the right side of my thyroid, which I was prepared for. What I was NOT prepared for was for him to say that he would only be taking the right side since I had a hot nodule. SAY WHAT?!?!?! All this time I've been thinking I have this cold nodule that is more likely to be cancerous, and now the surgeon is telling me I have a hot nodule?  He could clearly see the confusion on our faces, so he pulled up the report and read it aloud: "You have a nodule on the right thyroid gland which is producing excess hormones."  So, yep.  That sounds like a hot nodule to me! I have no idea where the confusion about the type of nodule came from - If I was told incorrectly, or if I heard it wrong, or if it was just too much information for me to process at first and I was just making up my own stories.  Whatever the reason, this was the best case scenario because it is extremely rare for a hot nodule to be cancerous. Hooray! 

I was wheeled back and prepped for surgery...and took a good 2-3 hour nap.

When I woke up, they took me to my semi-private room where I would be staying the night (my roomie affectionately called it our suite at the Hilton). Curtis was there to meet me and fill me in on what the surgeon had told him.  During surgery, the doctor removed the right half as we had discussed. After removing it, it was sent to pathology to be examined further. Because the doctor was so confident that there were no malignancies in my nodule, especially with it being hot, he was preparing to stitch me back up and get me ready for recovery.  It was at that time that the lab called back with the surprising results that they had found cancer. The folks in pathology were even so surprised that they got a 2nd opinion on it to make sure. So, the doctor went back in to remove the rest of my thyroid. 

I am so, SO thankful that they found the cancer right away while I was still there in that operating room. I am thankful for the surgeon, the nurses, and those beautiful people in the lab who caught it immediately so that I could get it taken care of right then and there.

My Name is Alysia. I Have Cancer.

My name is Alysia.  I am a 35 year old wife, teacher, and mother of two young children. My life took a dramatic turn last Friday when I was officially diagnosed with Papillary Thyroid Carcinoma.  Carcinoma...CANCER.  

I still haven't fully come to terms with the fact that I have this diagnosis.  I have been wandering through the last several days in a bit of a fog. It doesn't seem real.  It's certainly not fair.  I keep telling myself and everyone around me that it's almost over and that as soon as this incision on my neck fades into a barely noticeable scar, all of this will be behind me.  But the more I think about it, the more I realize that my life is going to be completely different from now on.  

My surgery last Friday left me without a thyroid, and the Radioactive Iodine treatment (RAI) that I will undergo in a few weeks will kill all of the remaining thyroid cells left in my body.  I don't know how much you know about your thyroid, but as it turns out, it's kind of an important part of your body.  Admittedly, I knew nothing about it before I found out there were problems with mine.  Allow me to educate you.

Your thyroid is a butterfly shaped gland that sits at the front of your neck.  It produces a hormone called thyroxine (T4) that helps your body maintain a healthy metabolism, as well as regulating your weight and body temperature.  Without your thyroid, your body goes into a state of hypothyroidism because you are no longer producing the T4 hormone.  This can cause fatigue, weight gain, depression, and memory problems.  

Because I no longer have a thyroid, I will rely on a medication called Levothyroxine to help my body regulate all of those functions.  I will take this medicine every day.  For the rest of my life.  It might take a while for us to find the perfect dosage for my body, but right now I'm on a middle-of-the-road amount.  I am hopeful that this dosage will be close to what my body needs so I won't have to experience the dramatic highs and lows I know some people have had to endure when going through this.  Did I mention that I'm a teacher and a mom?  I don't have time to feel sick. 

I have a post-op appointment scheduled with my surgeon this Friday.  At that time, I should have the full pathology report and will hopefully have even more specifics about my cancer. I realize that in everything I have read and from what all of the doctors have told me that the type of cancer I have is very treatable...even curable, which is excellent news.  And while I am definitely going to make the best out of the situation I am in and I will continue to look for positives, I also know that even though there's a great chance I will be able to get rid of all of the cancer in my body, I will still be living with a lifelong, chronic illness. This illness has already kept me from doing my job as a mom this week, and I know there will be more days ahead of me when I won't be able to be there for my kids as much as I would like. I'm going to continue to fight to make sure that those bad days are kept to a minimum so I can live the most normal life possible for the two best things that ever happened to me.