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5 Year Thyroidectomy Anniversary!

In celebration of my five year thyroidectomy anniversary, I am captaining a Relay for Life team. If you have found this site helpful, please consider making a small donation towards my fundraiser, which raises money for the American Cancer Society.

What a wild ride it has been. I’d say overall my quality of life is amazing.
Here is a recap from start to present of my thyroidectomy journey:

  • First 6 months after surgery – I have almost no memory of this time. It was like living in a hazy dream. Tired all the time. Tired and hazy.
  • Next year – very difficult to explain but essentially I felt like I had to ‘re-learn’ my body. Not in a ‘bad’ way but… things are different.
  • My short term memory feels severely impacted and I started using an iPad at work to help log notes – this has totally helped!
  • One year anniversary of the thyroidectomy, I completed a triathlon. I felt like a champion.
  • Year Two I learned that a low carb/high fat diet now works best for me to lose weight.
  • I also realize that not only is my short term memory junk, but facial recognition has devolved. I have a difficult time telling humans apart.
  • Year Three and Four I realize that I tire easily – endocrinologist confirms my levels are fine. I’ll chalk this up to age (I am in my late 30s) and lack of thyroid
  • Year Four – three different doctors tell me not to go on Birth Control because it will conflict with my thyroid medications. I do not listen to them. I should have listened to them. What a mistake. Ugh.
  • Year Five – just found out that my form of thyroid cancer was downgraded and is no longer a ‘cancer’! Follicular Papillary malignant mass does not spread outside the tumor and does not require radioactive iodine. I feel happy and justified that I didn’t go the radioactive iodine route.

2016

2016

October 2011

October 2011

Yes, I even put my surgery on my calendar, way back then.

Yes, I even put my surgery on my calendar, way back then.

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Life of the Thyroid-less, A Rambling

I had brunch with an ex-employee that I hadn’t seen in several years. While trying to downplay my thycan, my partner was like ‘honey, it hasn’t exactly been nothing!”.

So it’s been about 1.5 years since my thyroidectomy.
Quick recap: Had complete thyroidectomy due to cancerous tumor. Did NOT do radioactive iodine and the surgery went smoothly/easily. Even managed to lose 20lbs a year after by changing my eating habits.

What HAS been an issue for me are mood swings, especially around ‘that time of the month’. My period is a nightmare. It wasn’t like this at all before the thyroidectomy.

I went back on cytomel a few days ago and am hoping it helps stabilize things. My endo also is having me change the type of birth control I’m on and says I should use brand name, not generic, just to rule out any additional issues.

Late last year after I lost the weight, my body went wacky and I saw a Thyroid doctor who reduced my meds and took me off cytomel. This actually had a very adverse reaction and I became not only lethargic but had horrible short term memory loss. I couldn’t remember what I told people or what was told to me, which considering I am a program manager for a living (a job that entails lots of talking to lots of people), became very problematic.

Tip: Get a small laptop or iPad to take notes and document everything. This saved me at my job, I logged EVERY THING.

My endo upped my prescription and the brain fog lifted and I became human again. But even with a higher dosage I was still so sad, which made no sense considering my life is pretty fly.

So now back on cytomel (which is a T3 fast acting thyroid hormone) and feeling positive.

I know this is a fairly boring post but I get a lot of people reaching out to me about thyroid cancer. The biggest thing, honestly, is you have to pay attention to your body and emotional being. In some ways, you almost have to re-learn yourself and what certain physical or emotional signals really mean and stay on top of your medical care.

You can’t just get that original prescription and hold steady to that for years. Get your thyroid levels tested minimum once a year, more so if you are tired, gaining weight, lethargic, depressed, cloudy minded, or anything that doesn’t “make sense”. DO NOT let it ‘creep up’ into your life and then just ‘deal with it’. Go to the doctor, get it sorted out. Life is too short to live an inferior life when something as easy as an dosage change can brighten your life!!!

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Invisible Thyroid is Invisible

Invisible Thyroid

I’m not gonna lie – it’s been a rough week for me.

After losing weight and having my body go askew, I’m still dealing with the repercussions. The doctor had me go down to 100mcg of synthroid about a week ago.

This week, I am a ZOMBIE.

ZOMBIE!

I can barely move, I don’t want to see anyone, I want to hide my face in my hands. It feels like I am withdrawing (which I guess I am, coming down from 114mcg of synthroid).

ZOMBIE!!

Yes, I have made it into work and with grueling effort, made it through most each work day. I then go home and throw myself into bed, neglecting the cats. Don’t worry, they still get fed.

Mom doesn't give me enough attention so I'm going to snuggle this dishrag

Mom doesn’t give me enough attention so I’m going to snuggle this dishrag

I feel like such a whiner. I feel like I should be “stronger than this”. I mean, I’m healthy! I’m FINE! Why can I barely MOVE?

After a year of being so ‘on target’ with my thyroid meds, I am very disheartened for that state of steadiness to have unraveled. I had signed up for the Mulholland Challenge century but haven’t even begun training. The thought of even standing up right now causes waves of ‘noooooo’ to echo through out my body.

The apartment is a mess. I finally mustered up enough energy to bathe today (ew, body crust), and might work from home tomorrow, as I don’t see any meetings on my calendar that require me to be there in person.

So disappointed. I feel like my body is no longer ‘in my control’. Does that make sense?

The GOOD news is, is that although I am glum and exhausted, I am not depressed. I really attribute the drastic change in mental outlook to low carb eatin‘. So although I’m having a rough week, I know it could be SO much worse if I was still eating like I used to.

Although I totally pigged out on some comforting beef & butternut squash stew tonight.

Well, waiting to hear back on what the doctors say. I am working with two and honestly, ready to get a THIRD opinion as well.

I know I’m not the first person to lose her thyroid and then go through all of this. Would love to hear from others on how you got your thyroid and body ‘back on track’. Please let me know about the light at the end of this tunnel!

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Papillary Thyroid Cancer: A Year Later

Over a year ago, I was diagnosed with Papillary Thyroid Cancer. Looking back at my blog posts from that time, I can confirm that getting my slender neck back was the only “Pro” of having thyroid cancer.

I’m coming up on the one year anniversary of my thyroidectomy.

The past year has been interesting. Some thyroid related stuff, for anyone researching what life is like after a thyroidectomy:

  • Be very cautious of changing your thyroid meds, even in the slightest. I was destroying 25mcg of cytomel via my pill splitter, so the doctor had me switch from 12.5 mcg of cytomel to 15mcg (3 x 5mcg pills) a day. Well, I was thinking ‘YEAH! More cytomel = more energy and maybe weight loss!’. Oh ho. Oh no. no no. Instead, apparently I had an “paradoxical reaction” (doctor’s quote) and became extremely sloggy and tired and sad. #pill-splitter-fail
  • Tired. So Tired. But am I tired because of the thyroidectomy? Am I tired because of depression? I have no idea. It’s so confusing.
  • Depression. Am I depressed due to situational stuff going on in my life? Am I depressed because I always had depression? Is it because of med dosage? No idea.
  • Voice change. My voice HAS changed. Very slightly but it has a weird gravelly sound to it. I was filmed for a work-related interview and my voice sounded TERRIBLE. I CRINGED. Listen, if you dare. I’m only in it for a little bit, heavily edited out, probably because of my tragic voice. I used to do a lot of public speaking, too, so I need to start working on getting my voice back to sounding decent.
  • The scar. The scar is pretty faded and you have to look for it to see it. Sometimes it still really hurts, like a throbbing pain in the front of my neck. The pain definitely goes away after the first few months but pops up every now and again. No idea what triggers it. The doctor said that it can take up to a year for the pain to go away, because your body is filling in the gap with scar tissue/etc.

OK SO I don’t really have any ANSWERS. Just vague questions. Life is a bit adrift, but that is more of a big picture thing. No good way to conclude this so….. have a great weekend! πŸ™‚

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Post Thyroidectomy

I’ve been healing from having my thyroid removed. Sorry for all my normal readers, but I wanted to post about the thyroidectomy experience and post healing process. Mostly because I haven’t been able to find any that are NOT insane horror stories and were all non-normal scenarios. So hopefully someone who has thyroid cancer (or has to have their thyroid removed) will do a Google search and read my experience and help them feel better.

3 weeks after the cut. Note weird neck line above the cut - that was not there before - I think it's cuz there is a chunk of body missing on the inside, resulting in excess skin.

1. The worst part of the whole experience is waking up in the holding room after the surgery. You might find it hard to breathe – DO NOT PANIC. Take slow, deep breaths. It will be uncomfortable, but you should really focus on trying to breathe.

2. The hospital sucks. They will take your blood once at night and again in the morning to check your calcium levels. If they went up a bit overnight, they will probably set you free. I was able to leave by 8 AM the next day.

3. People will try talking to you. Your vocal chords are temporarily damaged and you can probably croak at them but it will suck. Text them on your mobile device and tell them to stop trying to make you talk. Texting is your friend for the first few days after the surgery.

4. You’ll be able to walk around, etc. In fact, two days after the surgery, you will start your new medication and you might feel AMAAAAAAAZIIING!! You will feel like you can run, bike, go hog wild. Don’t do it! It’s your body hyped up on hormones, since the old thyroid hormones take over a week to go away, so you are doubled up. The thyroid controls your energy levels, so of course with too many thyroid hormones coursing through you, you will feel amaazing!! wooo! superwoman! yaeahhhh!!

5. This will end. You will crash. Sleep is your friend.

6. You might feel great after two weeks and decide to go back to work. DO NOT DO THIS. You will get tired really easily and by that 1 PM meeting, feel like you got hit by bricks. Take THREE WEEKS OFF. I made this mistake and suffered heavily.

7. It takes about three weeks for the neck swelling to go down. My scar looks like a red line drawn on my neck, but that all depends on your skin type, etc. I smear Vitamin E on it every day and wear my hair back so it doesn’t stick to my neck. Classy.

8. It’s been about three weeks and I have most of my voice back. It’s hard to talk loud and I can’t hit the high ranges. Expect to NOT sing in your car for about a month.

Overall, I feel great CONSIDERING that only three weeks ago I had my neck slit open and my thyroid and surrounding lymph nodes cut out of me. I’m still a little tired, but overall pleased.

Please share your story about your positive post thyroidectomy story!

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Dead fish, vampires and one week post thyroidectomy

So a week ago from today, I went to the hospital to get my thyroid removed. Recap: I had Papillary Thyroid Cancer. The cure? More cowbell. No wait. Remove thyroid. 1 week post thyroidectomy!

Little known fact since this a blog about biking – I also specialize in saltwater aquaria, with a focus on invertebrates (coral, clams, etc). So I see a fishtank in the waiting room and wander over and am greeted with a horrifying sight.

This clownfish's days of laughing are over.

A dead clownfish, floating in the tank. The superstitious side of me, albeit small, starts to panic that this is a premonition of how the surgery will go.

So I flee the tank and wander around some more and see the following stuck to a door:

Well, hell. Depending on your chosen genre of vampire literature, I’d rather have a vampire sexily suck my blood then a goddamn needle jammed in my arm. It’s been a week and I still look like a domestic violence victim on my arms.

Finally I’m prepped for surgery, they put me under, I wake up and have a panic attack that I’m dying, and end up in a room. I won’t go into detail of the next 24 hours, which just really sucked, but I’m alive and I think I am well. We find out fully on Thursday, but the surgeon said it went really well.

Below is my ‘victory’ picture taken in the hospital after the surgery. I can’t believe I really thought my neck was getting ‘fat’ on one side (which was the tumor). I have my pretty slender neck back, and am doing really well.

w00t. πŸ™‚

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Cancer Patient to Cancer Survivor???

Wow, October is already upon us!

I had an amazing weekend mountain biking and hiking up in Oregon. I’ll have a separate post about that. Talk about an adventure, in many ways!

Today I am a .. cancer patient?
Tomorrow I’ll be a … cancer… survivor? Whuut?

Still strange to think about. Not scared about getting gutted, just concerned about the recovery period.

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Livin’ the Good Life & Nervous about Thyroid Cancer

So for the final weekend of having a thyroid gland, I decided to be a big roller and take my sister and I on a biking/hiking/kayaking trip at the McKenzie River Trail. Check it out – Rated #1 for having the best bike trails in America!!

We’ll take lots of pics – I’m super excited. I love Oregon, love biking, love trees and lakes… oh and my sister, I guess I love her, too, so we’re gonna have some fun!

I’m debating if I should draw a frowny face over the tumor on my neck. It’s sad because it’s going away. hahah To be honest, though, the closer we get to my surgery, the more nervous I am getting. I’m sitting here, my stomach is twisting into a knot. I know there is nothing to be afraid of but… I’m afraid??

Oh well. So I look forward to a final weekend of fun before I go into a few weeks of boring recovery.

Anyone ever biked up in that part of Oregon?

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The Pros of Having Cancer

So after disclosing that I have Teh Cancerz, people kept saying I could pull “the cancer card”. So while visiting my dad the other day, we had the following conversation:

Me: Daaad. I have cancer. Will you buy me a new bike??
Dad: Sure. What do bikes cost these days? A few hundred dollars?
Me: Uhhh the bike I want is around twelve grand…
Dad: WHAT? NO WAY.
Me: But I have caaaaancer
Dad: No. Go buy me a car.

What a fail!! So I got to thinking, what are the PROS of having thyroid cancer?

  • Post Op: Weight Loss– Unknown. Weight lost after surgery will most likely come back
  • Post Op: Cool Scar– Nope – scar will be barely noticeable and will probably just look like another neck wrinkle
  • Thyroid: Weight Loss– Nope – as I will be taking meds to simulate current thyroid levels, which are OK, no weight loss should ensue
  • Thyroid: No Depression– Nope – same as above. Nothing should change there, either
  • Radioactive Iodine: Special Powers– I very likely will NOT have go to on RadioIodine, but even if I do, you don’t get any cool special powers! No spidey sense. No X-ray vision. Psh
  • RadioIodine: Cool Glow – Nope, no cool glow either
  • RadioIodine: Isolation– Yup, can’t be around humans or even my pets. Wait, this isn’t a pro. It’s a partial pro, if I don’t LIKE the humans, but my cats can’t sleep on my bed with me?? Although being radioactive DOES sound kinda cool…
  • Sympathetic pity– Nope, since it’s such a curable cancer, I am not getting much in the sympathy department
  • Dates – No, in fact, dating life has dramatically decreased from zero to negative zero. Also, I DID try to use the ‘wanna palpate my tumor’ line on a date recently and was met with an emphatic NO. So yeah. Not a good pick up line.
  • Thinner neck – OK, I think this is the first PRO I have come across. Ironically, I was wondering if my neck was getting fat earlier this year. Well, YAY. My neck ISN’T getting fat! It’s just a tumor! asdlfkj oh morbid humor, how I love thee!

Anyways, my friend suggested I come up with a list of “Pros of Beating Cancer”, which surely will have more.. pros…? So far there seems to be very little difference of not having cancer, having cancer, then beating cancer, except the loss of my thyroid gland and a lot of money.

Oh wait, I forgot another pro about having cancer – it’s a fun topic to make jokes about!

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I Have Cancer? Whaaat?

Biopsy? Or bad date with vampire??


Interesting timeline of events:
1. Go to ENT because my septum is messed up. ENT pokes at my neck and makes me go get an ultrasound for my thyroid

2. Ultrasound results in ‘go get a biopsy’

3. Bilateral biopsy occurs. It’s really cool to watch the ultrasound monitor and see needles shoved into my neck repeatedly. Seriously! Well, cool until the anesthesia wore off. Owwww Yoga hurt that week!

4. I get a call last Monday from my ENT. I apparently have “Papillary Thyroid Cancer”. Huh? Whut? I have cancer? Whut?

So I do a bunch of research; it’s the “good one to get”. /rolls eyes
But really – I’ll be fine. They will remove my entire thyroid and I just go on replacement meds. No chemo, most likely no radiation. I barely have to miss more than a week or two of work.

I go to an oncologist for a second opinion. Yup, thyroid has to go. I’m Stage 2 (out of 4, so I’m fine). Tumor (TUMOR!?) is 2.4cm. I just thought my neck was lumpy. Now I keep poking my /tumor/ . It’s kinda cool.

This week I meet with a surgeon that specializes in the thyroid removals (apparently a bad removal can mean damaged vocal cords… so I can sound like a woman that has smoked for fifty years… ooo and become a famous blues singer!) and an endoncrinologist.

Honestly, the hardest part was telling my family. Just saying the word ‘cancer’ really freaks people out. There goes my dating life for the next few months. I want a rebrand of the name, since it’s a cancer with like, a 99% success rate. “Oh I have a minor issue called PTC… It’s all good.”

I’m more worried about life without a thyroid. It’s kind of an important gland. πŸ˜› But it’ll be OK. Just gotta keep riding, walking, being active. Unlike this weekend, where I grubbed around the apartment in pajamas with my Kindle.

The wise ass part of me wants to tell my niece and nephew I got cancer from eating McDonald’s. The thought cracks me up. I have a bad feeling this is just the beginning of a long litany of cancer jokes. Cuz.. you know.. now I HAVE cancer, I can make fun of it, right? hahahahah!!!

Know anyone who has had their thyroid removed? I wish the scar was cooler. “A guy tried to slit my throat; all I got was this scar, all he got was A GRAVE!”

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