What the Radioactive Iodine Treatment Was Like

What the Radioactive Iodine Treatment Was Like

Monday
Approaching the automatic hospital doors on Monday morning, March 24, 2008, 7-year-old Jack, who was walking with Pommy and me, blurted out in an animated voice, “Super thyroid!” This prompted a discussion of a proposed superhero called Super Thyroid Girl (three days later, the concept for Super Thyroid Boy was suggested—quite fairly, I think—by my exhausted but witty friend, Diane). At the moment I am typing this (Friday, March 28, 2008, at 1:03 pm), I am feeling nauseous, alone, and tired of feeling nauseous and alone, so this vision of Jack trumpeting, “Super Thyroid!” is the best and funniest memory I have of my radioactive iodine (RAI) experience.

I was admitted to the hospital and said my goodbyes to Jack and Pommy in the lobby at about 9:30 am. Walking down the wide hallways on the way to Room 531, I asked the hospital volunteer, David, if I would be in a special nuclear wing of the hospital, or if I would be in a different kind of room from the other, nonradioactive patients. He said no. When I walked into Room 531 at about 10:30 am, I was struck by how painfully average the room was. Nothing was covered in plastic or foreboding-looking shields. Nothing seemed particularly sterile or special about the room or its contents. It was all so “normal,” I began to wonder if they were going to take me somewhere else to give me the dose of RAI and then return me to this place.

The volunteer left and said my nurse would be in shortly. Within a few minutes, a young man came into the room with a clipboard, introduced himself as my nurse (I don’t remember his name) and said he would be asking me a few questions. He sat down in a chair and wrote my answers on a form while I stood there, not wanting to sit on the bed yet—not wanting to commit to “sitting down and staying for a while.” He asked if I was pregnant. I said no, counting on it to be true. He also asked me a series of questions about whether I had been thinking about wanting to take my own life and whether I had thoughts of death. I said, horrified, “No!” and commented after that line of questioning was over that it was a very sad set of questions. He said it was routine, that it was part of the hospital’s standard Suicide Risk Assessment.

The question I most vividly remember him asking me is, “Tell me in your own words why you are here and the treatment you will be having.” They had asked me the same question before my surgery four weeks prior. It amused me then, and it amused me this time, too. I still wonder if I had said something like “knee surgery” or “hip replacement” if the nurse(s) would have thought it was funny or if they just would have tagged my chart with “Pt. is a smart-ass,” but I’ll never know because I’m way too much of a rule-follower and a conformist, so each time I answered in thorough, technical terms. (Pre-surgery, I had dutifully answered, “Right thyroid lobectomy with a possible total thyroidectomy due to two suspicious nodules on the right side of my thyroid and one suspicious, palpable nodule on my isthmus.” This time I answered, “I-131 radioactive iodine ablation to kill the rest of my thyroid due to a diagnosis of papillary carcinoma on February 21, 2008.” So boring. So technical. So true.)

Soon after this nurse left the room, another male nurse named Vladimir came in and spoke to me in a thick Russian accent. Man, was this guy hard to understand! I think he said that I was to get comfortable and that the nuclear medicine radiologist would be in soon with my dose of RAI. Vladimir brought me two hospital gowns, I requested a pair of pajama bottoms, and he brought those, and then he left the room. I took the opportunity to change from my regular clothes into two hospital gowns (one open in the back, one open in the front, which would provide me with what we 41-year-old soccer moms fondly refer to as “full coverage”). I put my clothes and my purse in a closet and said goodbye to them for a few days. I wouldn’t be needing them or wanting them again until I left the hospital; I didn’t want to unnecessarily contaminate them with my radioactive self during my stay in Room 531.

Some thyroid cancer patients undergoing inpatient RAI treatment (also called RAI ablation—ablation meaning “to destroy”) bring their own pajamas, robes, clothing, etc., to wear in the hospital and then throw them away when they’re discharged (or even take them home and launder them), but I personally didn’t want to bring in anything of my own, even for comfort purposes…except, of course, for the clothes I wore into the hospital, socks, underwear and a pair of blue slippers whose days were numbered anyway. I’m a Sweaty Betty when I’m not being treated for thyroid cancer, and I didn’t know if the pill would make me sweat more. Turns out it did. Anyway, I wanted to sweat in their gowns, not my pajamas or clothes. Along those lines, everything I brought into the room with me (shampoo, toothbrush, slippers, socks, underwear, a few low-iodine snacks--more on this later—I threw away before I left two days later.

Vladimir came back into the room with a current issue of USA Today and the only piece of protective “nuclear” equipment I saw during my stay. He wheeled in a horizontal lead shield measuring about two feet by four feet and set it up on the left side of my bed. Presumably, this was to protect the abdominal areas of nurses if they had to approach my bedside to tend to me. It couldn’t have protected much more than their abdomens—it was too short and too small. I found this odd because it wouldn’t have protected their thyroid areas…just much lower on their bodies. It didn’t matter much anyway because nobody really used it except for my day nurse on Tuesday. Vladimir didn’t even care that it was there. Every time he entered my room, he seemed totally unconcerned about exposure to RAI. All my other nurses steered clear of me as if I had the Plague. Then a very tall, large man and Sonny, the nuclear medicine tech I had met the week before, came in with a locked silver box in hand. Vladimir left, Sonny taped two signs on my hospital room door (one said “CAUTION—RADIOACTIVE MATERIALS,” and the other sign said “DO NOT CLEAN.” Then Sonny shut the door. It was the last time I saw the hospital hallway—and anything but the inside of my room—for 48 hours.

It began to feel tense in the room. Was it all me? All my apprehension? All my nervousness? I don’t think so. I think I sensed that Sonny and the tall man, who Sonny introduced as Dr. So-and-So, the Head Nuclear Radiologist, had a lot of paperwork and a certain protocol to follow. It all felt very official. They had me sign a form that said I consented to receiving 150 millicuries of I-131 (isotope 131) radioactive iodine as a treatment for thyroid cancer.

Then Sonny and the doctor unlocked the silver box. I almost screamed, I was so nervous. Sonny reached inside and took out a small solid tungsten pill bottle, wrapped in plastic and covered with a burgundy belt-type thing. He sat it on the table next to my hospital bed, where I was sitting. He poured me a cup of water. He broke the plastic seal on the bottle, took off the plastic, unscrewed the tungsten cap, and withdrew a small, white, barely-larger-than-a-Tylenol-sized capped cylindrical container. He popped the cap off and leaned over toward me as if to pour the pill into my hand.

Now would be a good time to apply the brakes a little. I had read all over the Internet, but specifically on www.thyca.org, not to let anyone put a treatment dose of radioactive iodine into your hand. There are many stories of pills opening up in people’s hands and their hands being “hot,” both literally and in the nuclear sense, for weeks—even months. I had also read not to let anyone pour the pill from the bottle into my mouth because it’s important that it doesn’t get lodged between your gums and your teeth—another opportunity for months of pain and suffering. So when Sonny leaned over toward me and intimated that he was going to pour the pill into my hand, I said, “I was told not to put the pill directly in my hand.” He said, “Oh no, it’s OK if it touches your hand. It won’t hurt you,” and I said, “No, I’d really rather not. Can you pour it from the bottle into the pill cap for me?” So he did, and he handed me the shallow pill cap. The pill cap was exactly the same diameter as the clear-coated dark gray pill, so when I tried to pour the pill into my mouth, it got stuck in the cap and wouldn’t fall onto my tongue. I stayed composed, although I don’t know how, and I turned the pill cap right-side-up again and tried to turn it upside down over my tongue one more time. This time it came out, landed on my tongue, and I took a drink of water and swallowed it.

And then…nothing. It was approximately 11:45 am Monday morning when I swallowed the pill.

For a few hours, I waited to feel different. To feel nauseous, to feel weird, to feel sleepy, to feel sick or weird or ANYTHING.

Incidentally, whenever food was delivered to my room during my stay, the person delivering it would knock on the closed door, open the door slightly, shout “Food’s here” or something similar, and then the door would shut, they’d re-open it and set a disposable tray on the edge of a small table just inside the door and beyond a curtain that separated my bed from view of the door. So I never once saw anyone who brought me food. Then they’d flee. I would walk over to the table and take the tray back to my bed, and when I was done with it, I’d dump it in a big blue lidded trash can by the door.

They brought me lunch at 1 pm, and I couldn’t eat anything on the tray because the chicken breast covered in spaghetti sauce, mashed potatoes, vegetables in a gelatinous thin white sauce, and some kind of pudding concoction were all foods that are not allowed on my low-iodine diet. I asked Vladimir if he could bring me a piece of fruit, and I reminded him of my low-iodine diet and showed him the packet of iodized salt (!!!) that was on my food tray. He returned with a transparent to-go container of cottage cheese surrounded by sliced watermelon, cantaloupe, and honeydew. I graciously thanked him and after he left the room, I took a napkin and wiped the cottage cheese off the fruit and ate it, throwing away the cottage cheese. That was my lunch.

At around 3 pm, I started to feel something. Or at least I thought/think I did. I felt like I was a little bit electric. It’s hard to describe because it was something I’ve never felt, but it was a very vague sensation that I was sort of electrically charged. Sort of metallic. Sort of conducive or magnetic. This feeling lingered for a day or so.

It may sound silly, but my number-one fear going into the hospital for this treatment was that I would barf it up before it had a chance to work on killing my remaining thyroid cells. Some thyca patients get nauseous after their treatment dose, and I was worried I’d be one of them. Thankfully, I wasn’t. I had read stories online about patients barfing up their doses and then there’s a big production because who wants to clean up radioactive vomit? And it’s just a mess and all that. I worried I’d barf, be covered in my own nuclear upchuck and nobody would want to help me for fear of exposing themselves and then that I might cry and be covered in radioactive tears, too. Anyway, that was one more thing I needn’t have worried about. I did not barf up my dose or cry.

Dinner Monday night was more crap I couldn’t eat, and since I had brought my own LID (low-iodine diet) snacks, I ate some Trader Joe’s no-salt frosted shredded mini wheats, a few dried prunes and some freeze-dried apple slices with a Diet Coke I also brought from home. Nothing tasted very good because your taste buds can get dull after RAI, and mine were a little dull. I was dying for some protein. I was fantasizing about steaks and chicken breasts cooked with noniodized salt, pepper and garlic powder. I was starving, my stomach was grumbling, but I didn’t want to both anybody for anything else. At 8 pm, I broke down and called my husband and asked him if, the next morning, he could bring me a steak I had cooked on Saturday and put in the refrigerator, and he said he and Jack would bring it by in the morning before they left town for Indian Wells. I told him of all the low-iodine foods I had in the house, and he collected them all, including the steak, and put the bag of food in the fridge for me. I was so grateful.

Monday night, my hospital stay began to feel a little like “Survivor.” I would have gladly eaten a rat for protein if I’d been able to catch one, but even rats didn’t want to be in Room 531 after my dose of RAI. I was starting to lose it—and all because of such a silly thing as hunger. Although Vladimir had been very kind and had gotten closer to me than he should have every time he was in my room (a couple times he even sat at the foot of my bed even though I had told him he was getting too close), I had had a very hard time understanding him, and every time I had asked him about the alternative food he could get for me, he had said, “You can eat iodine. It will not hurt you.” At 7:30 pm, the night nurse, Michelle, took over. She was a black woman who poked her head in the door, introduced herself as Michelle, and I never saw her again. I felt like I had the plague.

That night at 9 pm, I noticed a white board near the hospital room door. It listed an extension to call if your stay was less than satisfactory, so I called the extension. I nicely inquired about the food, and told them of my low-iodine diet, and they were like “Isn’t someone calling you and asking you what you want?” They weren’t. So they asked what I wanted for breakfast, and I said scrambled egg whites cooked in oil, not butter, and some fresh, whole fruit—an apple or a banana—not a fruit cup. Also hot tea. Then I called Pommy and told him I had figured out how to work the food system and that he didn’t need to drop off my LID food at the hospital for me the next day. I was feeling guilty, and I didn’t want Pommy and Jack to make a trip to the hospital if they didn’t absolutely have to.

That night I woke up several times covered in sweat. I was both hot and cold at the same time. Not quite like a fever, but my temperature was definitely out of whack. I was grossed out by the fact that my sweat was radioactive and looked forward to showering on Tuesday morning.

Tuesday
I took a shower right when I woke up at 7 am. Around 9:30 am, they brought me approximately two undercooked scrambled egg whites, a cold buttered bagel, an apple, a banana, and some hot tea. Glory! I ate the wet egg whites and the banana and drank the tea. I saved the apple for later. As soon as I finished the eggs and banana (I think it took me less than a minute to eat them; I was ravenous, and I was a little nauseous from being hungry), I called the kitchen and ordered the same thing for lunch, but I asked for five scrambled egg whites well done, no bagel, and some more fruit. They were nice about it.

The nurses’ shifts were something like 7 am to 7:30 pm and 7 pm to 7:30 am. My day nurse Tuesday was also named Lynn, and she was my favorite nurse during my stay at the hospital. Maybe it’s because she shared my name. Maybe it’s because she did things to make me feel not like a leper. Maybe it’s because she took the time to check my temperature and my blood pressure twice that day. Maybe it’s because she brought me two Tylenol capsules twice because I told her my shoulders were aching from the way I’d slept the night before. She took the time to talk to me a little bit and was sweet when she approached me and I told her to be careful because nobody else had stood that close to me since I was dosed the day before.

Wednesday
Hospital discharge. Mom’s car sitting there waiting for me. Freedom. Running, with arms up in the air, victorious. Singing “thyroid in a bottle” out the window on way out of Irvine. Feeling of freedom but weird to be OUT.

As soon as I get home, start researching post-ablation WBS again, collect info, call Grossman’s ofc, my PCP (left urgent message)

Grossman finally calls me. Finally OKs post-ablation WBS.

I've resorted to harassing my endo on this point three days in a row (knowing time is of the essence), and after I enumerated 4 convincing bullet points to him, he finally sort of shouted at me over the phone this afternoon, "Well, I don't think you need it, but I'll order it from your HMO just to humor you" and then semi-shouted "Bye!" and hung up. This is the kind of man/doctor he is. Now I'm waiting for approval by my insurance co, Aetna, keeping my fingers crossed that the approval comes post-haste, because it typically takes several days to schedule it once I have the approval, and they will not schedule it without the insurance co's approval. Ah... The 8-day window of opportunity closes on Tuesday. I know Dr. Kenneth Ain (www.thyroidcancerdoctor.com), a respected thyroid cancer expert and author of The Complete Thyroid Book, recommends doing the scan 48 hours after the ablative dose, but that is obviously an impossibility. If I had known this endo would blow this part of my treatment so badly, I would have switched endos before my RAI, but I was so stressed and hypo then, I didn't want the extra hassle.

Thursday
Worked on jewelry trees all day—the best day of the week. Energy good, loved the project. Busy. But dropped the ball following up with Grossman’s staff. Should have called them first thing and made sure they were on top of getting the WBS authorized asap.

Tracy brings me a Peanut Butter Twix, Milky Way, and two Self magazines. So nice.

Friday
First thing, because both songs have been on my mind, purchase Foreigner’s “Juke Box Hero” and Christina Aguilera’s “Genie in a Bottle” on iTunes. Play “Genie in a Bottle” on repeat for about an hour, making up new lyrics to make it “Thyroid in a Bottle (Ode to Synthroid).”

So far, it goes a little something like this:

If you want some energy
Baby, there's a small co-pay
I'm your thyroid in a bottle
Gotta take me the right way

If you wanna fight hypo
I can make your wish come true
Gonna make a big impression
Might even make you go poo

I’m your thyroid in a bottle, baby
Gotta take me the right way, honey.
I’m your thyroid in a bottle, baby
Come, come, come on and let me out.

That's all I have for now, but it just might be enough to keep me smiling til Saturday, when I get to take my very first Synthroid ever.

Spent most of the morning on phone with Grossman’s office (Sharon) getting my WBS authorized by my insurance, then spent the afternoon on the phone with Irvine Reg. Hosp. trying to get the WBS scheduled for asap. Must call Monday morning 8 am to schedule it for asap. Tracy brings me Jalapenos burrito for lunch and gets me a few groceries I needed.

Saturday
Leslie brings by purple tulips, strawberries, raspberries, a Star Magazine, People mag, and one other mag.

Tracy visits. It’s nice. She has been my only visitor this week, except for Pommy, who came by for an hour yesterday afternoon to do a load of laundry and reconnect with the homestead. I was sick of talking about my cancer, so after we exhausted that topic, we talked a lot about Fawz’s situation and how to help him out of his depression, etc. I felt that I was able to witness to her a little bit, we spoke of God a lot, she talked about praying a lot, she is open to prayer and asked me to pray for her and Fawz.

Sunday
I had a terrible night last night, and for the first time since this whole thing was revealed, I really felt like I had cancer. For the first time I really felt SICK, if you known what I mean. Yesterday afternoon my sister Tracy came over and we sat in the garage about 8 feet away from each other and talked for 2 hours from about 3-5 pm. It was nice. It was the longest I'd been around someone since being home, and for that reason, it was wonderful.

But after she left, I had the sensation that I was getting a headache on the right side of my head, and some pain in the right side of my neck/where it meets the shoulder, so I took 2 Advil LiquiGels. I was also aware of feeling mildly nauseous. The nausea increased quickly, and pretty soon I was so nauseous I didn't know what to do. I'd had a late lunch (2:30ish, of leftover pizza, salad and ranch dressing--perhaps too much of all three). Maybe this was why I got sick?

I tried everything I'd read works for post-RAI nausea--ginger tea, ...OK, did I try anything else? Maybe not. I'm having trouble remembering last night. Anyway, I was so nauseous and my head was throbbing, but I doubted it was a typical migraine because the headache was on the right side of my head, not the left, and my migraines are 100% of the time on the left side of my head. So I didn't think an Imitrex injection would help, as I didn't think it was a migraine. I laid down on the bed at about 5:30 pm and dozed off and on until about 8, when I forced myself to get out of bed (I'd been laundering all the sheets and blankets that day, and when I'd laid down, I'd just haphazardly covered up with the mess of clean covers that were sitting on the bed waiting to be put back on) .

I got up around 8, stumbled to the bathroom, took an Excedrin since the Advil hadn't helped, called Pommy back (he'd called while I'd been dozing) and told him how I felt. It sucks when you feel so terrible and you know nobody can really help you since you're a walking bug zapper. Plus, on top of that, I felt bad for telling Pommy how bad I felt because I didn't want to worry him, and I knew he'd be worried and feel powerless. I made the covers on the bed sort of organized, doubled everything up (double blanket, double comforter, plus two extra afghans, bundled up, and propped up the pillows so I could sleep sitting up. My head felt a little better when I wasn't laying flat. I made it through the night by dozing from 8:30-2 am, watching a TiVO'ed Saturday Night Live (the girl from Juno was the host) and then falling back to sleep. I was still nauseous and couldn't fathom eating anything. But I did chew gum. My mouth tasted awful despite brushing my teeth with my new Biotene toothpaste (good for post-RAI because it's for dry mouth, and RAI can fuck up your salivary glands).

I woke up at 6, took my Synthroid, laid in bed a few more minutes and then got up, with most of the worst of the headache gone. I slowly started cleaning the house. I took it slow. I knew Pommy and Jack wanted to come back asap, and I was determined to get the cleaning part done while I felt halfway decent. I was done cleaning by 9 am, called Pommy, and he and Jack came home at about 10:30. Jack gave me a reluctant hug. He knows I'm not totally "safe" yet. Pommy must have told him, and I'm glad he prepared him. They are so ecstatic to be home. I'm so glad they are back where they belong. Jack told me all about a trip they took to Boomer's yesterday, describing it as "my best time at Boomer's ever."

I started to get the headache back pretty good around 11 am, so I propped myself up in bed and slept for an hour. Woke up, still had the headache and it had moved entirely to the left side of my head, so I gave myself an Imitrex injection and immediately started feeling a lot better, head-wise. I was hungry but less nausea, so Pommy made me Campbell's Chicken Noodle Soup and I ate a few Ritz crackers with it, and I haven't been too nauseous since then. It's 3 pm -ish now. I'm exhausted. Lifting my arms is a chore. I can tell my comeback is gonna take some time. I wonder what my TSH was Saturday morning before I took my very first Synthroid ever. It had been 58.9 some 11 days earlier. Who knows how high it got before Saturday at 6 am, when I started taking the replacement that, with any luck, will soon bring it back down to 0.10 (for thyroid cancer patients, they call this "having your TSH suppressed") and keep it there forever, except when I get whole-body scans yearly for follow-up.

All of this is a lot to read, I know. I just wanted to document it. I don't know why. It makes me feel better to purge it out. It's cathartic.

Monday, Day 7 after RAI
My taste buds are totally non-functional. I can’t taste the previously Heavenly flavor of melted butter or cream cheese on a bagel.

Leslie picked up Jack from school for me and dropped him off here at about 3 pm. I sat at my computer while he did 4 out of 10 pages of his weekly homework. He was a good boy—didn’t give me any sass about taking a shower or any of the other things he was in the habit of arguing with me about before the RAI. He asked me a couple times if he could get me anything and asked, “How do you feel?” He is such a sweet child.

I spoke with Brendan on the phone. He is fascinated that I can’t taste anything.

At the end of the day, I am in a good mood. I feel fairly relaxed, appreciate Jack and Pommy (even their loud antics getting Taco all riled up and barking shrilly). Pommy has been helping me so much. He grocery shopped on Sunday, got a bunch of easy-to-prepare dinner items (oven stuff), went to Toys R Us and bought two birthday presents for the two birthday parties Jack will be attending in the next 7 days, and has been doing dishes, made me lunch and dinner Sunday and has been a rock for me. He’s been sleeping on the couch and setting up shop (clothes, weights, etc.) in Brendan’s room.

Tuesday, Day 8 after RAI
I feel like I’ve turned a corner. I slept through the night last night for the first time since the RAI pill. I am in a good mood. I have a little energy. I took Taco for a 1-mile (approx.) walk this morning. I might take a short nap this afternoon before I pick up Jack at school, but I might not. I also just got on a ladder and wiped down the kids’ bathroom ceiling with bleach. It had been getting traces of mold on it from so much shower steam. I’m proud of myself. Although I have to admit that while I was squeezing out the rag and breathing bleach fumes, I had to wonder if I was giving myself a new cancer. I sort of mean this as a joke, but I’m sort of serious, too. One wonders how much of what one deliberately does might encourage or even cause cancer. Never used to wonder this, but now things are different.

No more nausea.