Can I just say that I love you guys? The last few days have been a rush; I’m drowning in the swirls of bright words and glowing warmth that you’ve sent. There’s not enough gratitude for the tribe of people I do life with. My community, my church, they come along and continue to carry me even when I don’t expect it. They number across the globe and yet, I love them as deeply as if we’d spoken yesterday. God’s design is good, y’all. We need each other. Thank you for putting power in the words you lift to Heaven for us. Thank you for taking a minute to ask how I’m doing and then actually listening as I respond. Thank you for dropping in and calling and texting. I could gush for years and it wouldn’t be enough. You matter. You so desperately matter.
Speaking of caring and carrying, while you’ve been asking me how I’m doing, I’ve been attempting to explain as best and as succinctly as I can. I want to answer your questions more thoroughly, for you to know what I’m expecting/experiencing over the next few weeks. That explanation is sometimes too long and uncomfortable for the limited time we have face-to-face, so instead, I’m throwing it out to all of the internet. . .
You should know that what you’ll read below is based on my own experience. I’m not suggesting that all who are treated for thyroid cancer (or have thyroid issues) will agree/share in these feelings/symptoms/issues. This is merely my attempt to put a ton of information in one place. My hope is that this serves as a reminder and will clarify some things that may have been misunderstood before.
So here’s the scoop:
I’ve been withdrawing from my synthetic thyroid medicine for 17 days now, with four left to go. On Monday, we’ll draw blood to check my hormone levels; essentially, my body needs to be starved for TSH so my stray thyroid cells soak up the radioactive iodine. (Since iodine is key in producing thyroid hormones, they drink it in, radiation and all. The goal of treatment is that all thyroid cells cease to exist.) Assuming my levels check out, I’ll take the pill just before lunch on Tuesday. After this, Mitch and I will drive home. I will sit in the back seat so he gets as little radiation exposure from me as possible.
Q: Will you be confined/isolated when you get home?
A: Yes, to an extent. I get to come home from the hospital, but I will have to keep my distance from people for several days and be cautious around children/pregnant women for longer. Even Mitchell has to sleep in a different room, use a different bathroom, etc. This is to protect others from exposure to my radiation.
Q: Do you need anything? What can I do to help?
A: Keep calling. Keep texting. Write a letter, send a card, or stop by; I won’t be able to hug you, but I can chat with you from at least six feet away. If your gift is in the culinary arts, we’ll be your guinea pigs for that new recipe you want to try! My confinement limits me from preparing meals for others for a few days. While Mitchell is perfectly capable of feeding himself, we never turn away a lovingly prepared dish. And we have plenty of freezer space. 🙂
Q: How will you feel?
A: This, of course, is a bit trickier to answer because there’s no way to tell for sure. However, I can offer a very long list of what I’ve experienced in the past and what I’m anticipating this time.
Warning: this is where things get personal. . .
[*Stars indicate those that have, in fact, become an issue to some extent as of the date of this posting.]
- *Brain fog – I get spacey. My thoughts won’t connect and I confuse easily, my memory fails, my words won’t come (sometimes causing a stutter), and I can’t focus.
- *Headaches – Varying in location, intensity, and persistence. Just stupid.
- *Eye strain – One of the first symptoms to show and the most steady; my eyes strain, they burn and ache and get tired faster than they should
- *Throat strain – My throat feels stressed and my voice will glitch, crack and squeak. I’ll feel like I need to clear my throat (If on Sunday, you stood next to me at First and heard my squeaky singing, I apologize.)
- Hair – Becomes brittle and thin. Plenty will fall out and my scalp will be tender.
- *Skin – Dry, dull, and “thin” much like winter skin, but not easily fixed with a good lotion. Also, breakouts. Thirteen-year-old kid style . . . after a pizza and Mountain Dew binge.
- *Muscles and Joints – Achy and stiff all over, but the muscles in my neck and shoulders (I’ll often realize my jaw is clenched and have to make a conscious effort to “loosen up”) and the joints in my hips hurt the most.
- *Breathing – I don’t know if it’s caused by a muscle weakness issue or if the thyroid regrowth/scar tissue flare continues to slightly block my windpipe, but I often find myself needing to stop and take deep breaths, as if I’m not breathing deeply enough already
- *GI Tract – Nausea will come and go, most of it minor. Digestion continuously slows which, besides making eating tricky, leads to other unpleasantness (just imagine all that can occur along the digestive tract, from top to *cough* bottom).
- Nails – brittle, weak, dry, with weird vertical ridges. My cuticles aren’t happy either.
- *Hot/Cold tolerance – Fluctuate from one extreme to the next; I can’t regulate my own temperature
- *Disorientation/dizziness/unbalance – sporadic and more specifically in the mornings after waking up, it takes a long time for me to feel like I’m on Earth
- Depression – heavy. Like, super go-hide-in-my-closet and curl-up-in-the-floor kind. With no explanation other than my hormones are way off. This often occurs toward the end and around treatment – when I ‘m most out of whack and confined.
- Weight gain – Even though I’m not eating because of slow digestion, my body blows up. When thyroid hormone disappears, so does my metabolism. So, that’s fun.
- *Energy level – Nearly non-existent at times; I’ll be sluggish
- *Insomnia – Even though I’ll feel tired and will want to sleep a lot more, most of it isn’t successful. i.e. – No continuous, deep sleep & no feeling rested. And really weird dreams. Really weird.
- Strength level – Wanes. Lifting my arms will be annoying.
- Immune System – Struggles; I will often feel myself “wearing down”
[**Disclaimer: While these things aren’t enjoyable, I’ve been pleasantly surprised at the lack of intensity this time. I’ve felt unusually better than what I anticipated. Maybe stocking up with oils and supplements made a big difference. Maybe the mild winter weather is helping how I feel. Your prayers are definitely making an impact. Perhaps it’s the combination of all three.]
Now, on top of all that, are the side effects of RAI therapy which will come next week after I’m treated on Tuesday. This list is much shorter, but I’ve found that, for me, this is what happens:
- Taste buds – gone and/or funny, metallic tastes
- Dry mouth – Ick. Biotene is my friend.
- Skin – Crawls, turns extra sensitive as the particles leave my body
- Digestion – wonky; cravings one minute, nausea the next – fairly consistent low-grade nausea for the first few days with sporadic spikes in intensity
- Gut – it will be as if I can feel the radiation moving through my innards, my bladder and kidneys get tender. I’ll be drinking lots and lots and lots of water and green tea.
[For more (official) information on Radioactive Iodine treatment, you can click on these links from Barnes-Jewish Hospital, the American Cancer Society, and ThyCa: Thyroid Cancer Survivors’ Association, Inc. Even though it’s not where I’m being treated, Memorial Sloan Kettering Cancer Center also has a great page explaining RAI I-131 therapy.]
Q: What happens after this?
A: Good question. I don’t know. This is the last time I can be treated with radioactive iodine (I-131); after the third time, my doctors tell me there’s no added benefit to re-treating this way. (I’ve read, too, after the third treatment, my risk for other cancers (particularly leukemia) increases. It makes sense to me, but I have’t asked my docs specifically.) My prayer is that this round does it. If not, the only answer I’ve gotten thus far is “We’ll have to wait and see. Check your lab work, that sort of thing.” For now, we proceed with treatment, focus on recovery, pray, and wait.
Whew. If you read through all that, bravo. You’re clearly very concerned about me, interested in ThyCa treatment, or really, really bored. If you’re curious about anything else, please ask. Leave a comment or shoot me a message. I’m glad to tell you what I know.
Now, exhale and step away from all this thyroid-cancer-treatment-side-effect talk and consider this mind-boggling story you’re a part of. To me, this chapter feels full of adventure, like playing hopscotch in a minefield – an exhilarating game among tall grasses and wildflowers, but with the ever-present fear of real injury. I can look up, though, and see sunset on the ridge. It is stunning. As we continue this intricate skipping game, I’m glad to have you by my side.
Grab my hand and hold on. #RadiateJoie