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February 24, 2017

The RAI Diaries: 12 days of radioactivity and brain flatulence

She began the conversation with, “I have concerns…”

Nothing good ever follows that preface; there’s never been a phone call conveying the message “I have concerns your parenting skills are causing your children to become well-adjusted members of society” or “I have concerns you won’t be able to use the inheritance money.”

The last time a doctor called me at home, the conversation started with “I have concerns about your biopsy” and was followed by words such as thyroid cancer and papillary carcinoma. That was 20 months ago.

This time, my doctor was concerned about thyroglobulin, a protein that showed up in my blood during my last blood test.

I’m not a biochemist, but here’s a simple explanation of why this became an “Oh crap” moment: Thyroglobulin is used as a cancer marker because only thyroid cells can make it.

Twenty months of blood tests showed a nice fat ZERO for thyroglobulin, but then it suddenly skyrocketed to triple digits. Subsequent blood tests showed it doubling every two weeks.

It was time to go nuclear on the malignant punks.

How thyroid cancer is treated

Let’s get some boring background information out of the way first before we hit my play-by-play diary.

Thyroid cancer is generally treated with surgical removal of the thyroid gland. Since the body needs thyroid hormones for metabolism and pretty much every other bodily function, cancer veterans must take artificial thyroid hormone for the rest of their lives. The hormones provide a two-fold purpose: first, they keep the rest of the body functioning and second, they prevent the brain from releasing signals that more thyroid hormone is needed in the body. If the brain releases the signal, any remaining thyroid cells start growing.

Radioactive iodine is used along with thyroidectomy and hormones if cancer cells are discovered in lymph nodes or other parts of the body. It’s also used when rogue cells decide to make a comeback and proclaim, “I’m back, sucka!” Unlike other cancers that are treated with external radiation, thyroid cancer patients must swallow the radioactive iodine via a capsule and spend five days in isolation so that others are not exposed.

 

Dear Diary: My nuclear days and glowing nights with RAI

The road to radioactive iodine treatment begins with a two-three week diet that culls out all that is wonderful in the world such as eggs, dairy products, most salts, seafood and chocolate. The low iodine diet is designed to strip the body of the mineral so that the rogue cells will absorb the radiated iodine. (Thyroid cells, both healthy and cancerous, are the only cells in the body that suck up iodine.)

Roughly a week before swallowing the radiation, some patients begin taking a drug called Salagen, which protects the salivary glands, and lithium, with makes them experience out-of-body experiences and brutal nausea. (Actually, lithium is supposed to help the iodine get absorbed. I ended up absorbing the contents of an IV because I heaved up the lithium and everything else that was in my stomach. ) If insurance covers it, patients also receive two injections of Thyrogen, a drug that triggers the brain to release the “We need more hormone” signal. It also makes the body experience intense hypothyroidism symptoms such as fatigue, brain fog, slowed reflexes and more. If Thyrogen is not covered, patients must stop taking their thyroid hormones for roughly four to six brutal weeks to ramp up the hypothyroidism.

radioactive iodine
Day 1: Good things come in lead containers. (Image credit: Flickr, Steven DePolo)
Day 1: Whatever you do, don’t touch this with your bare hands.

I received the big dose of iodine this morning – – 104.6 millicuries. It was a bit disconcerting to have the nurse rush out of the room after handing me a lead container and saying, “Whatever you do, don’t touch this you’re your hands.” But swallowing it is totally OK.

It is now time to rest at home for the next five days in the Fortress of Solitude.

The isolation in the Fortress of Solitude protects mere mortals from the radioactive sweat, tears and other toxic fluids I might diabolically – or accidentally release from various biological openings.

On Day 6, I shall emerge for the Fortress with my new superpowers of mind control and the ability to fold fitted sheets.

I shall also emerge with dead bodies of all papillary carcinoma cells that dared to challenge me.

My doctors didn’t give me much “what to expect” or “what to do information”, but I got great tips from other thyroid cancer veterans.

• My mattress is covered by two plastic table cloths so I don’t contaminate the whole thing with radioactive sweat, drool or projectile stomach contents. Everything else can be washed.

• I plan to pitch the pillows when this over. I already admitted to being a drooler.

• I have rubber gloves I can wear while I use my computer; it’s much easier than wrapping the keyboard in plastic wrap. I’ll also wear gloves while using the remote control and my cell phone.

• My hubby purchased disposable plates, cups and utensils for my meals.

• We set up baby gates in front of my room so the dogs don’t sneak in. Hubby put a small table just inside the gate so he can leave my meals on it.

• I have a box of trash bags. All of my trash will be nuclear, so it needs to be double-bagged to protect others. I’ll also have to hold on to it for a little while so the radioactivity can die down. All of my laundry must also be double-bagged, and I’m the only one who can touch it. I’ll have to run each load through the wash cycle a few times.

Day 2: Mark Zuckerburg and Pappadeaux’s work for Satan.

My little dog didn’t do well not sleeping with me. Charlotte has been by my side ever since she was a puppy – curled up next to me when I sleep, sitting in my lap when I sit, and trailing my heels when I walk.  She sat outside the Fortress’s gate all night long and cried. I cried, too.

When I “officially” woke up, I got hit with a very sore throat and swollen neck. My voice is a little weak, and the mirror reveals I’ve developed a chipmunk face over the last few hours. The nausea is also back, but thankfully, I’m just queasy and not heaving.

Ugh, I feel awful. And full of brain flatulence.  I keep repeating myself in conversations with the family, and I’ve already lost my cell phone four times.

I really don’t want to eat, but I’ve been sucking on lemon wedges and sour candy to protect my salivary glands. My doctor started me on Salagen earlier this week. The drug essentially tells your glands “Go Crazy!”  so you end up producing a lot of saliva. I’m very happy I put the plastic table cloths on my bed.

Apparently, I was feeling a little masochistic because I started watching old episodes of “Top Chef,” which REALLY ticked me off because I’m still on the low iodine diet and the judges were whining about someone’s cream sauce. Oh dear God, it’s a cream sauce! Do you know how lucky you are! I haven’t had dairy for six weeks, and you’re complaining about lumps?

Recognizing the folly of watching a cooking show, I checked my social media accounts. That didn’t work so well either; I keep seeing ads for Pappadeaux’s  Seafood Kitchen. The folks from Nothing Bundt Cares are also in on it.

How does Mark Zuckerberg know?

Kanye West
Day 3: Kanye West, when he wasn’t burning my eyeballs (Image: Twitter)
Day 3: Kanye West burned my eyes.

This isolation thing is getting old, but thankfully, I have the attention span of a squirrel so I really can’t dwell on it.

I had planned to spend my time reading books and watching Netflix, but I can’t focus on anything. My friend, Marie, who is a cancer caregiving veteran, encouraged me to be brainless with her delivery of a People magazine and a note that read:

“I can’t imagine you every buying one of these completely mindless, useless and ridiculous magazines. Enjoy!”

Oh, I shall. I shall indeed.

But first I need a nap.

Three hours later, I’m reading about Kanye West and my eyes begin to burn. Dang, this is why I never buy People magazine. I later realize it wasn’t the Kanye story that hurt my eyes, although it did hurt my hope in humanity. My eyeballs and tear ducts hurt because they got fried by the radiation.

 

Day 4: It’s like sucking on a handful of pennies.

Officially done with the low iodine diet! My husband thought I’d want something from the former forbidden food list for breakfast – something like scrambled eggs and bacon smothered in melted cheese and chocolate.

No, the only thing I wanted was cereal. With milk.

Thankfully, I can still taste things. Other thyroid cancer patients told me everything tasted metallic after radiation. One described it as “the taste you get after sucking on a handful of pennies.” That’s a mental image I can’t shake.

I haven’t had much of an appetite, but, to be fair, my entire digestive system is running a bit slow thanks to the side effects of hypothyroidism. Nonetheless, you need a happy colon after radiation. EVERY bodily fluid and secretion has radiation in it, and the sooner you get it out of your body, the better off you’ll be. It’s time to chug down some Colon-Blow and hope for the best.

 

Day 5: Estrogen can kick the snot out of cancer cells.

It’s my last day of isolation, and it’s also the roughest day I’ve had so far. Physically, I feel OK, but I’m an emotional wreck. My son got sick at school, so my husband had to bring him home. I started crying because so desperately wanted to hug my little boy, pet his head and take care of him.

This is Mommy Hell.

I am watching my baby suffer, and I cannot do anything to help him. Yes, his dad is taking good care of him, but my mama instincts aren’t making this easy. I picture all my mama hormones surging through my body and kicking the snot out of every cell and radioactive particle they encounter – just because they’re incredibly ticked off.

 

My dog Charlotte
Day 6: There was wagging, wailing and wetting the floor. This is Charlotte, during a dog shaming moment.
Day 6: The first thing I did when I got out of isolation was…

Sweet freedom! I am officially done with isolation.

The first thing I did this morning was go upstairs to my sleeping son’s room, kissed his head, and hugged him while he slept.

Charlotte lost her mind when I returned downstairs. There was wailing, wagging and wetting the floor – from her, not me.

I had to decontaminate my bedroom and bathroom before anyone else could go inside, which involved deep cleaning the sink, shower, floor and toilet. It also involved washing every sheet, pillow and blanket with hot water and bleach. Five loads of laundry later, the Fortress of Solitude was ready for mortals again.

 

Day 7:  I shouldn’t be driving.

I drove myself to the grocery store to pick up a few things and quickly realized, “I shouldn’t be driving.” Oh, crap. I forgot that I was still experiencing hypothyroidism and my thinking skills and reflexes are still a bit foggy. I had made a list of eight things I needed to pick up, and in my stupor, got only four of the items – plus a bonsai tree.

Someone needs to take my car keys and debit card until this is all over.

 

Eyelash mite
Day 8: The scanner can decapitate eyelash mites. Don’t get too cocky; you have them, too. (Image source: Wikipedia)
Day 8: Decapitating the eyelash mites at a Ke$ha concert.

The doctors want to see if the cells swallowed up the iodine, so it’s time for me to hop back in the scanner.

I did my best to watch the monitor during my first scan, and sure enough, my neck sparkled like mounds of glitter at Ke$ha concert. I’m looking forward to watching the light show again, this time with dance beats providing the soundtrack in my head.

I lie down on the scanner bed, and the tech covers me with a warm blanket. The actual scanner is roughly ¼ inch from my face, close enough to decapitate these creepy little mites that live in my eyelashes. (You’ve got them, too.) I wait for the scanner to pass from my head so I can sneak a look at the monitor, but I wake up an hour later.

I can now tell people I passed out at a Ke$ha concert.

 

Day 9: The rule of threes plays out at home.

You know that old saying about bad things happening in threes? Well, it played out in our family this week. First, I became a radioactive, hormone-starved zombie. Then my elderly mother-in-law was admitted to the hospital. Third, my husband’s cousin passed away due to brain cancer.

Hubby left this morning for her funeral in Georgia. His sister dropped everything to take care of their mom.

I slept most of the day, my kids are fending for themselves, and the guilt is killing me.

 

Glowstick
Day 10; Perhaps it wasn’t a good idea to pour the glow stick contents into the toilet. (Image: Flickr, Tim Dorr)
Day 10: I probably shouldn’t have done that with the glow stick.

Hubby came home this afternoon.

I broke a glow stick and spilled the contents in the toilet bowl; I figured we needed a little levity.

 

Day 11: How to reach your healthcare deductible in four weeks

A new family record! We’ve already surpassed our healthcare deductible for the year.  It’s pretty easy to do with three physicians, Thyrogen injections, two nuclear scans, custom-made radioactive capsules and five rounds of extensive blood tests.

I have to go back to work; there needs to be cash backing up all the checks I’m about to write.

I still can’t drive, so I made arrangements to work from home for the rest of the week.

I lasted three hours and then fell asleep for most of the afternoon.

That went well.

 

Squirrel caution
Day 12: No one warned me that I’d have the attention span of a squirrel after RAI. (Image credit: Flickr, Andry Belenko)
Day 12: I ask my oncologist about squirrel brain.

Back to my oncologist’s office to discuss the last scan and future plans.

My cancer cells acted like a tres leches cake, but rather than soaking up creamy goodness, they soaked up the radioactive iodine. (Note to self: Get tres leches cake. The oncologist says that’s a good sign, but it will take a few months to know if the treatment worked. The radiation doesn’t instantly kill the cells, but it should prevent them from reproducing.

Apparently I’m not thinking clearly yet, because I ask him when I will be free of squirrel brain and brain farts.

My exact words.

He tells me most people feel somewhat normal a week or so after RAI, but it can take a month or two for some folks to ditch the fatigue and brain fog. The dry eyes and sore throat may take a little longer. I’m a bit skeptical; it took almost 18 months for me to feel normal after my initial thyroidectomy.

Nonetheless, my time as an oncology patient is over for now. He transfers me back to my endocrinologist who will reset my Synthroid doses and regularly test my blood to see if the cancer markers decrease over time. If they do, the radiation worked.

Now I wait.

For more information about thyroid cancer, please check out www.thyca.org. 

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3 Comments on The RAI Diaries: 12 days of radioactivity and brain flatulence

  1. Thank you for sharing this. July 29 will be my one year anniversary from having my thyroid removed. I also had papillary carcinoma. I also did the thyrogen injections and the RAI capsules. My son was one, so I had 11 days of isolation from him. It was tough. I will go back in October for major scans and important visits. I enjoyed your writing.

    • Thank you for sharing your story, Michelle. The hardest part of the RAI is being quarantined away from family; I can’t imagine how tough it was not being able to touch your baby. 🙁 I wish you the best on your October scans; mine come up in September.

  2. Thanks for allowing others to see that being sick does involve humor and pain at the same time. You create a light for others to follow and have the strength and hope.

    La Duni has great Tres Leches cake – if you can drive lunch and cake is on me!

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