I want to kind of speak out for other people who are going through similar things that I’m going through, (thyroid cancer/follow-up/scans/blahblahblah). I know one or 2, (and read about LOTS) of people who are going through this who don’t have the support system I do, and suffer from accusations of “gold-bricking” and such. NO BUENO!
Papillary thyroid cancer is supposed to be one of “the good cancers” because it’s so slow-growing that it’s more often than not caught early enough that it won’t kill you. But it CAN kill you if not dealt with eventually, so deal with it we must. And yes, the treatment for this cancer is “easy” compared to having to go through chemo: Surgically remove the thyroid, go through a one-time radio-active iodine treatment to kill off any residual thyroid tissue and cancer, spend a few days in isolation so as to not radiate loved ones, then a life-long regimen of thyroid hormone replacement pills… DONE! Right? We’re all done with this? Right?
Oh, so wrong. So very, very wrong.
First, consider the organ we are dealing with. Basically, the thyroid is your battery. The thyroid regulates lots of different functions throughout the body. The thyroid regulates metabolism, how we use calories/energy we get from food, it sends signals out that tell the body how to use proteins, it influences brain development, the rate and strength of the heartbeat, rate of oxygen the blood uses, and even the rate at which we breath… yep, the very breath we take! It also regulates sexual functions, speed of thought and ability to focus, body temperature, (a biggie) growth, and many other functions.
Here’s the bigger problem. The most common kind of thyroid cancer, (papillary thyroid cancer) can somehow linger on, and can potentially show up having metastasized just about anywhere in the body years down the road. Yup, even without a thyroid you can have thyroid cancer. And so once a papillary thyroid cancer patient, always a papillary thyroid cancer patient. We will have to be monitored for the rest of our lives. Usually that just means keeping an eye on the blood work, making sure the numbers line out the way they should. But if those numbers start getting out of whack, there may be a problem. Some lucky stiffs, (such as myself) have thyroglobulin antibodies present in their system that render all those other numbers unusable. The only way to know for certain that there is no cancer in there is to do a (low-potency) radioactive WBS, (whole body scan). And do you know what they do before a WBS? **THEY TAKE AWAY YOUR THYROID HORMONES!!!! FOR AT LEAST 6 WEEKS!!! Even if there is a smidge of suspicion that there might possibly be cancer they have to take away the hormones! It’s a bit complicated, so I’ll spare the details, but it has to be done. So… no thyroid hormones = no metabolism/energy = sluggishness, aches and pains, foggy-thinking, irrational reactions to cold/heat, extreme fatigue, low libido, weight gain, water-retention, hair-loss, on and on… If you’re already a migraine sufferer, get ready for more frequent and stronger migraines. Nightmares are common, as is depression. Of course, everyone is different and will experience different levels, combinations, and severity of these and other symptoms. But I’ve known cross-fit competitors who were way-layed by having to deal with this. For most people it’s. Not. Fun. According to one study I read about, the average loss of work time for people prepping for a WBS is 14 days.
(** there is an alternative, but it’s super expensive and most insurances don’t cover it. Also, no one knows the cause of thyroid cancer. It’s not preventable. No diet, no exercise, no “life-style” changes will lessen anyone’s chance of getting this cancer. It’s not super common, but it is one of the fastest rising cancers. It’s curable, has a high survival rate… and it still sucks. Hard. )
As for me… my ordeal, (this go-round) is almost over. I had my WBS yesterday, am back on meds as of today, and will see the doctor in a week to get the results of the scan. It will likely take a couple of weeks for me to start to feel something like ME again, but I’ve got a plan… Operation Rebuild Wendy has begun! I am incredibly blessed to have a husband, daughters, friends, family who don’t question what I’m going through. They can see it in my swollen face, my puffy eyes. James especially supportive, constantly trying to put his self in my shoes. And he is o! so patient! I’ll be radioactive for about a week, which means no sharing food, beverages, not even kissing. But he does everything in his power to make sure I know I am loved and supported.
The first couple of weeks off meds were ok. But after about 3 weeks I began to get dizzy, couldn’t focus, even my eye sight became blurry. And then the headaches began. I’ve never experienced such headaches. Even the migraine medications the ER gave me couldn’t get rid of the pain. I’d wake up with a headache in the morning that would increase through-out the day, tried various pain relievers, sleeping pills to deal with it and try to sleep through it. Then eventually, like hours later, it would become bearable. My endocrinologist said that hypothyroidism, (the condition resulting from not enough thyroid hormones) doesn’t usually cause headaches. But my research found that if you’re already prone to occasional migraines, hypothyroidism can trigger them, and make them worse. I finally figured out how to get a lasso around that problem, making the headaches less intense.
At the same time all that began, the fatigue started. And oh, my! I’ve never had such fatigue! Some days just taking a shower makes me so tired that I have to just crawl back into bed. Yesterday I attempted to chop a pound of strawberries and my arms felt like lead. Muscles cramp out of the blue. I’ve gained a lot of weight in a very short amount of time, tho I really don’t eat that much.
I’ve gone through days where my spirits were so low that I just felt useless. Ugly, fat and useless. But a dear friend reminded me that my super-power is in loving. “You love.” she said. Thank you Amy. You have no idea what that meant to me. Turned me around. Gave me light… no, showed me my own light! Made me feel “worthful” again.
And so I’m on the road to recovery, surrounded by people who are supportive, understanding, and love me even when I don’t love myself.
So if you know someone who is dealing with “a good cancer”, or even with the suspicion of it, hold them up. They need you.
My scan is done. Operation Rebuild Wendy has begun.
Now if there is actual cancer in there, that’s a whole ‘nother blog post.
Hello Butterfly! 
Hi Wendy. I’m so sorry to hear this. My wife went through this four years ago (which I wrote about here: https://fauxmat.wordpress.com/?s=thyroid). What I wanted to share is that post radioactive treatment and several WBS’s later, life has returned to normal for her. The hormone doses took a bit to perfect, but once set there really were no long-lasting side effects, apart from the daily ritual of pills. I know it’s scary. I know it sucks. And anyone who doubts what you’re experiencing isn’t worth your time! But ultimately it will get better. Wishing you all the best –Andrew
Hey Andrew- I’m just now seeing this! I don’t seem to get notified when I get comments, (but I think I’ve fixed that). Thank you so much for the comforting words. And yes, things have gotten better, (after 2 more RAIs). Finally beginning to find my energy again. Hope all is well with you all. And I’ll look for you in the music rooms!
WW