My two sisters (one older, one younger) have been obsessed with Nancy Drew books since they started reading them when they were young girls. I read a few, too, but for one reason or another, they never caught on with me the way they did with my sisters. In the original Carolyn Keene series of Nancy Drew books, Nancy’s love interest was always Ned Nickerson.
NED means No Evidence of Disease, and that’s what we thycans want to hear after our battery of one-year follow-up tests. But there was no NED for me 14 months after my surgery and
diagnosis. First, let me describe what the testing is like, and what the doctors are looking for that would indicate NED (or ED).
The process of doing the follow-up testing
Describe it, going hypo
Off Synthroid
Day 5: Dream about filling a purse with milk and carrying it around all day
Day 8: Tired and wired at the same time
Day 10: Dizzy, tired, shaky
Day 11: TSH only at 4
Day 18: Go skiing with family; feel great. TSH is probably in the 30 range.
Day 25: TSH at 60.27. Feel fantastic. Energy level fine.
Day 26: Gut-wrenching diarrhea day before scan dose. God-induced bowel prep? God tells me you have diarrhea for a reason
Day 29: my last day off Synthroid
Back on Synthroid
Day 1: Very tired. Hard to keep arms raised over head for more than a few seconds. Weak and shaky.
Day 2: Need 2-hour nap in afternoon. Night of Day 2, I cannot sleep—eyes racing around head, heart palpitations, I think from the ½ Cytomel I took. Not taking that again.
Day 3: Migraine. Shot of Imitrex. All better. Feel very good and happy rest of day.
Day 4: Feel good but a little tired. Nap in afternoon.
Day 5: Feel VERY good. Tons of energy. Work in snack bar at Brendan’s baseball game with Jack. Very good mood—talking to lots of people. I’m friendlier than usual.
Day 6: Migraine. Shot of Imitrex. All better. Fine rest of day. Tons of energy around dinnertime. Making dinner, Swiffering, have lots of physical energy.
Day 7: Feel good.
LID diet
I can breathe through both nostrils for the first time in years. No dairy the reason? Or God?
Saturday, April 5, 2008
Sunday, March 30, 2008
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.
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.
Wednesday, March 19, 2008
What I thought the radioactive iodine treatment would be like
What I thought the radioactive iodine treatment would be like
March 19, 2008
Hello, friends and family!
Some of you have been asking for details on my
upcoming radioactive iodine treatment. Others of you
have not, but I'm sending you this in case you crave a
short education on this particular field of nuclear
medicine. (Who doesn't pine for such a thing? After
all, it makes for great bedtime reading if you want
weird, Silkwood/Three Mile Island/Chernobyl-influenced
dreams.)
First of all, I'm scheduled to check into Irvine
Regional Hospital on Monday, March 24 (the day after
Easter), at 8:30 am. Sometime around 10:30 am, after
I'm out of my normal, cute clothes and dressed in 2
delightfully chic hospital gowns (don't want anyone
getting a glimpse of me olde cheeks, if you know what
I mean), the nuclear medicine radiologists will send
me into a hospital room in the nuclear medicine wing
of the hospital, where a pill-bottle-sized tungsten
cylinder will be waiting for me.
Inside the cylinder will be a capsule filled with 150
millicuries (mCi) of radioactive iodine (RAI). I will
"pour" the pill into the tungsten cylinder cap, and
then swallow the capsule with a glass of water, being
sure not to let the capsule touch my hands or get
lodged in my mouth between my teeth and gums. (This is
what I've been told, anyway.) I shouldn't feel too
weird or have a negative reaction, but of course, all
bets are off when you're swallowing radioactive
*anything.* For months afterwards, you can have a
metallic taste in your mouth, have a dulled sense of
taste, have salivary gland issues...etc...all of which
I am prepared for and I will do everything in my power
to prevent...Baking soda rinses, lemon drops, Biotene
toothpaste...
[Incidentally, I owe thanks for most of my education
on this disease NOT TO MY DOCTORS but to
www.thyca.org. Check it out if you're interested.]
I'll stay in the hospital for one or two nights while
the nurses watch me glow (hardy har har) and basically
avoid me. If they have to talk to me, they will stand
behind a lead shield to protect themselves from my
highly radioactive state. Obviously, I don't get to
have visitors. They will periodically use a Geiger
counter (I kid you not--they use a Geiger counter) to
"read" my radioactivity levels, and when I am emitting
(not sure if this is the right word) 30 mCi of
radioactive iodine or less, they will discharge me
from the hospital. My mom is going to give me a ride
home from the hospital; she is the most logical choice
for a chauffeur because she has a thyroid that no
longer functions at all, due to her own complicated
thyroid history, so any exposure to me, even in this
30-mCi state, is completely safe for her. Exposure to
radioactive iodine only harms the thyroid because
thyroid cells are the only cells in our bodies that
want/need/can use iodine.
I will spend approximately 6 days in total isolation
(this includes hospital time and time here at home)
while Pommy and Jack go on a 3-day trip to Indian
Wells and then stay at my parents' house for 2 nights.
(Our dog, Taco, will spend the entire time at my
parents' house.) Pommy, Jack and Taco will rejoin me
at home Sunday night, March 30, after I have cleaned
all areas of the house I spent time in during their
absence. Although I will still have to take a few
precautions around the house for the next several
days, it will be safe for us to be together again, and
every day that passes thereafter will result in a
progressively lower level of radioactive iodine in my
body. (Estimates for this dose say the level of
radioactive iodine 10 days after administration is
about 0.0002 mCi for me.)
Radioactive iodine kills remaining thyroid tissue that
even the most complete thyroidectomy can't get rid of.
(They have to leave some thyroid tissue around your 4
parathyroids because they're so delicate.)
Administering RAI is a standard practice whenever
there is a finding of malignancy in one or both lobes
of the thyroid. In my case, there was only malignancy
in the right lobe of my thyroid, but they take the
entire thing out if there's multifocal malignancy (more than one focus of cancer), because in the
long run, testing and tracking and screening for any
recurrences is much easier if there is NO thyroid
tissue left anywhere in the body.
I'll have annual or 6-month whole-body scans and
blood tests to check for any signs of recurrence, and
eventually, they'll probably stop doing the whole-body
scans and just rely on blood tests.
I'm sure this is more than you all wanted to know, but
there it is, all laid out for you--like I said before,
in case you're into this kind of thing. I have to
admit, I find it all a bit fascinating. That they let
people out of the hospital emitting 30 mCi of
radioactive iodine is a shock to me, but I'm one of
the "lucky" ones. The protocol at Irvine Regional
Hospital is to keep patients until they are down to 30
mCi; some hospitals administer RAI on an outpatient
basis and send people home right after the 150 mCi (or
200 mCi or whatever their exact dose was). This leaves the
responsibility of protecting the general public in the hands of
the individual patient, and as you all know, not
everybody really cares or educates themselves about
the danger they may pose to others. Sorry--I'm getting
a tad political.
Anyhoo, that's the scoop. I'm sure I'll be writing
about the experience as it really happens (not just
how I'm picturing it now, based on what I've been told
and read), and I'll send my treatise your way if you
want me to when the time comes. I keep thinking maybe
I'll write the great American novel that week with
everybody out of the house, but maybe I'll just nap a
lot!
Thank you all for your prayers and support. I know God
is taking care of me, and there have been many
positive changes in my life as a direct result of the
diagnosis, so I truly believe that He meant for me to
discover this now, and that His plan for me is totally
awesome and way better than anything I could possibly
dream up.
Love to you all and Happy Easter!
Lynn
March 19, 2008
Hello, friends and family!
Some of you have been asking for details on my
upcoming radioactive iodine treatment. Others of you
have not, but I'm sending you this in case you crave a
short education on this particular field of nuclear
medicine. (Who doesn't pine for such a thing? After
all, it makes for great bedtime reading if you want
weird, Silkwood/Three Mile Island/Chernobyl-influenced
dreams.)
First of all, I'm scheduled to check into Irvine
Regional Hospital on Monday, March 24 (the day after
Easter), at 8:30 am. Sometime around 10:30 am, after
I'm out of my normal, cute clothes and dressed in 2
delightfully chic hospital gowns (don't want anyone
getting a glimpse of me olde cheeks, if you know what
I mean), the nuclear medicine radiologists will send
me into a hospital room in the nuclear medicine wing
of the hospital, where a pill-bottle-sized tungsten
cylinder will be waiting for me.
Inside the cylinder will be a capsule filled with 150
millicuries (mCi) of radioactive iodine (RAI). I will
"pour" the pill into the tungsten cylinder cap, and
then swallow the capsule with a glass of water, being
sure not to let the capsule touch my hands or get
lodged in my mouth between my teeth and gums. (This is
what I've been told, anyway.) I shouldn't feel too
weird or have a negative reaction, but of course, all
bets are off when you're swallowing radioactive
*anything.* For months afterwards, you can have a
metallic taste in your mouth, have a dulled sense of
taste, have salivary gland issues...etc...all of which
I am prepared for and I will do everything in my power
to prevent...Baking soda rinses, lemon drops, Biotene
toothpaste...
[Incidentally, I owe thanks for most of my education
on this disease NOT TO MY DOCTORS but to
www.thyca.org. Check it out if you're interested.]
I'll stay in the hospital for one or two nights while
the nurses watch me glow (hardy har har) and basically
avoid me. If they have to talk to me, they will stand
behind a lead shield to protect themselves from my
highly radioactive state. Obviously, I don't get to
have visitors. They will periodically use a Geiger
counter (I kid you not--they use a Geiger counter) to
"read" my radioactivity levels, and when I am emitting
(not sure if this is the right word) 30 mCi of
radioactive iodine or less, they will discharge me
from the hospital. My mom is going to give me a ride
home from the hospital; she is the most logical choice
for a chauffeur because she has a thyroid that no
longer functions at all, due to her own complicated
thyroid history, so any exposure to me, even in this
30-mCi state, is completely safe for her. Exposure to
radioactive iodine only harms the thyroid because
thyroid cells are the only cells in our bodies that
want/need/can use iodine.
I will spend approximately 6 days in total isolation
(this includes hospital time and time here at home)
while Pommy and Jack go on a 3-day trip to Indian
Wells and then stay at my parents' house for 2 nights.
(Our dog, Taco, will spend the entire time at my
parents' house.) Pommy, Jack and Taco will rejoin me
at home Sunday night, March 30, after I have cleaned
all areas of the house I spent time in during their
absence. Although I will still have to take a few
precautions around the house for the next several
days, it will be safe for us to be together again, and
every day that passes thereafter will result in a
progressively lower level of radioactive iodine in my
body. (Estimates for this dose say the level of
radioactive iodine 10 days after administration is
about 0.0002 mCi for me.)
Radioactive iodine kills remaining thyroid tissue that
even the most complete thyroidectomy can't get rid of.
(They have to leave some thyroid tissue around your 4
parathyroids because they're so delicate.)
Administering RAI is a standard practice whenever
there is a finding of malignancy in one or both lobes
of the thyroid. In my case, there was only malignancy
in the right lobe of my thyroid, but they take the
entire thing out if there's multifocal malignancy (more than one focus of cancer), because in the
long run, testing and tracking and screening for any
recurrences is much easier if there is NO thyroid
tissue left anywhere in the body.
I'll have annual or 6-month whole-body scans and
blood tests to check for any signs of recurrence, and
eventually, they'll probably stop doing the whole-body
scans and just rely on blood tests.
I'm sure this is more than you all wanted to know, but
there it is, all laid out for you--like I said before,
in case you're into this kind of thing. I have to
admit, I find it all a bit fascinating. That they let
people out of the hospital emitting 30 mCi of
radioactive iodine is a shock to me, but I'm one of
the "lucky" ones. The protocol at Irvine Regional
Hospital is to keep patients until they are down to 30
mCi; some hospitals administer RAI on an outpatient
basis and send people home right after the 150 mCi (or
200 mCi or whatever their exact dose was). This leaves the
responsibility of protecting the general public in the hands of
the individual patient, and as you all know, not
everybody really cares or educates themselves about
the danger they may pose to others. Sorry--I'm getting
a tad political.
Anyhoo, that's the scoop. I'm sure I'll be writing
about the experience as it really happens (not just
how I'm picturing it now, based on what I've been told
and read), and I'll send my treatise your way if you
want me to when the time comes. I keep thinking maybe
I'll write the great American novel that week with
everybody out of the house, but maybe I'll just nap a
lot!
Thank you all for your prayers and support. I know God
is taking care of me, and there have been many
positive changes in my life as a direct result of the
diagnosis, so I truly believe that He meant for me to
discover this now, and that His plan for me is totally
awesome and way better than anything I could possibly
dream up.
Love to you all and Happy Easter!
Lynn
Saturday, March 1, 2008
How I Discovered I Had Thyroid Cancer
Sometime in 2005 or 2006, I noticed a small bump in the middle of the front of my neck. It was kind of like a small Adam’s apple, except that I wasn’t a dude, so it couldn’t have been an Adam’s apple. It went up and down when I swallowed, it didn’t hurt at all, and I didn’t think anything of it. I assumed it had always been there. I was wrong.
I love making people laugh, and I’ll try any material—especially self-deprecating stunts—to get a giggle. (It’s not very “pretty,” but I am quite well-known for making a pig nose at the dinner table just to see if I can make somebody or other burst out laughing.) About the bump on my neck, I remember joking to my two sisters--one older, one younger—that I had an Adam’s apple and that I was turning into a dude. I don’t really remember if it made them laugh, but I certainly thought it was funny. I still do.
In November of 2007, I went to see an otolaryngologist (an ENT—ear, nose, throat—doctor) for some long-annoying sinus problems that I was finally so sick of that I asked my primary care physician for a referral to a specialist, hoping to get to the bottom of it. I was sitting on the examination table when the ENT came into the room, and before he asked me anything about my sinus problems, he examined my throat and neck area. He felt the bump on my neck and asked me a bunch of questions about it—had it always been there (I told him I thought so), did it hurt, had I noticed it getting bigger or changing in consistency, etc. He said he thought it might be a “thyroglossal duct cyst” and recommended having an ultrasound to get a better look.
The doctor and I also discussed my sinus problems, and he ordered a sinus CT. My problems were (and still are) primarily on the left side of my face near my cheekbone (my left maxillary sinus, I’ve come to learn). Leaving his office with an order for a sinus CT and an order for a neck ultrasound, which I had not been expecting, I scheduled the appointment for the neck ultrasound as soon as I could get in and put the sinus CT on the back burner.
Of course, when I got home that day, I Googled “thyroglossal duct cyst” and read for a couple hours. I wasn’t worried; I just wanted to know what the possibilities were. I have this bad habit (or is it a good habit? I don’t know) of trying to figure out all possible scenarios so that whatever happens, I will not be surprised or taken aback by the sequence of events as it unfolds. I like to try to picture all the different outcomes of any set of circumstances; this is, of course, impossible, and a person could drive themselves batty trying to prepare for anything that might happen. But the habit did lend itself to a cute self-made label—“mental flowchartist”—which I was pretty proud of for a while and threw into conversations whenever I could. I’m such a show-off.
I don’t even remember what I read about thyroglossal duct cysts, although I just noticed that I still have some of the pages I read that night bookmarked on my Internet toolbar. The list of “thyroglossal duct cyst” bookmarks in my browser toolbar falls right in between bookmarks for “Crayon stains on clothing” and “Jump-o-Rama.” Which is nice. This somehow seems relevant and possibly proves that I was carrying on a very normal life at the time. I was trying to do three things at the time: remove pesky Crayon stains from my son Jack’s clothing, research what was possibly wrong with my neck, and find a (reasonably priced but not so cheap it’s got dried barf on it) bounce house for Jack’s 7th birthday party, which was coming up on January 14, 2008. This is the life of a stay-at-home mom, a life I love.
Whatever I read about thyroglossal duct cysts, I remember reporting for my neck ultrasound on a Thursday morning without any worries. The technician did her thing, didn’t say much of anything during the ultrasound, and told me the radiologist would look at the images and send a report to my doctor in a few days. This is a statement I’ve heard many times since then.
I got a message on my answering machine the next day (on a Friday afternoon) from the manager of the department where I’d had the ultrasound done, and she said not to worry but that they needed some more pictures of my neck and could I come back in? She also said that this time the radiologist himself would be present for the ultrasound and possibly even perform part of the exam to make sure he got a clear picture of my neck. When I got this message, I started to worry. I knew something was up.
I made another appointment, and this time I was tense as the radiologist did the scan. He kept saying things like “You have beautiful anatomy” (presumably to be reasssuring), but I also keenly heard the other things he and the head of the ultrasond department were saying to each other…words like “calcification” and phrases like “Is that it?” and “Is that one on the isthmus?” It was during this ultrasound that I knew with certainty that I had cancer or some other serious condition. Two or three times the radiologist said, “I’m sorry this is taking so long. It’s just that you have such beautiful anatomy,” and if I hadn’t been nervous about what he was seeing in my neck, I would have thought that was a creepy thing to say. I told him, “I don’t need to be anywhere; take as long as you need to.” As I turned my head to the far left so he could position the wand to get a closer view of the right side of my neck, the first hot tear of this kind rolled over the top of my cheekbone into my left ear.
I had an appointment with the ENT to discuss the results a few days later. I asked my husband to come with me to this appointment, because I had a feeling it would be a biggie.
biopsy
inconclusive
surgery
Diagnosis
Cancer
RAI
Life after all that…
I love making people laugh, and I’ll try any material—especially self-deprecating stunts—to get a giggle. (It’s not very “pretty,” but I am quite well-known for making a pig nose at the dinner table just to see if I can make somebody or other burst out laughing.) About the bump on my neck, I remember joking to my two sisters--one older, one younger—that I had an Adam’s apple and that I was turning into a dude. I don’t really remember if it made them laugh, but I certainly thought it was funny. I still do.
In November of 2007, I went to see an otolaryngologist (an ENT—ear, nose, throat—doctor) for some long-annoying sinus problems that I was finally so sick of that I asked my primary care physician for a referral to a specialist, hoping to get to the bottom of it. I was sitting on the examination table when the ENT came into the room, and before he asked me anything about my sinus problems, he examined my throat and neck area. He felt the bump on my neck and asked me a bunch of questions about it—had it always been there (I told him I thought so), did it hurt, had I noticed it getting bigger or changing in consistency, etc. He said he thought it might be a “thyroglossal duct cyst” and recommended having an ultrasound to get a better look.
The doctor and I also discussed my sinus problems, and he ordered a sinus CT. My problems were (and still are) primarily on the left side of my face near my cheekbone (my left maxillary sinus, I’ve come to learn). Leaving his office with an order for a sinus CT and an order for a neck ultrasound, which I had not been expecting, I scheduled the appointment for the neck ultrasound as soon as I could get in and put the sinus CT on the back burner.
Of course, when I got home that day, I Googled “thyroglossal duct cyst” and read for a couple hours. I wasn’t worried; I just wanted to know what the possibilities were. I have this bad habit (or is it a good habit? I don’t know) of trying to figure out all possible scenarios so that whatever happens, I will not be surprised or taken aback by the sequence of events as it unfolds. I like to try to picture all the different outcomes of any set of circumstances; this is, of course, impossible, and a person could drive themselves batty trying to prepare for anything that might happen. But the habit did lend itself to a cute self-made label—“mental flowchartist”—which I was pretty proud of for a while and threw into conversations whenever I could. I’m such a show-off.
I don’t even remember what I read about thyroglossal duct cysts, although I just noticed that I still have some of the pages I read that night bookmarked on my Internet toolbar. The list of “thyroglossal duct cyst” bookmarks in my browser toolbar falls right in between bookmarks for “Crayon stains on clothing” and “Jump-o-Rama.” Which is nice. This somehow seems relevant and possibly proves that I was carrying on a very normal life at the time. I was trying to do three things at the time: remove pesky Crayon stains from my son Jack’s clothing, research what was possibly wrong with my neck, and find a (reasonably priced but not so cheap it’s got dried barf on it) bounce house for Jack’s 7th birthday party, which was coming up on January 14, 2008. This is the life of a stay-at-home mom, a life I love.
Whatever I read about thyroglossal duct cysts, I remember reporting for my neck ultrasound on a Thursday morning without any worries. The technician did her thing, didn’t say much of anything during the ultrasound, and told me the radiologist would look at the images and send a report to my doctor in a few days. This is a statement I’ve heard many times since then.
I got a message on my answering machine the next day (on a Friday afternoon) from the manager of the department where I’d had the ultrasound done, and she said not to worry but that they needed some more pictures of my neck and could I come back in? She also said that this time the radiologist himself would be present for the ultrasound and possibly even perform part of the exam to make sure he got a clear picture of my neck. When I got this message, I started to worry. I knew something was up.
I made another appointment, and this time I was tense as the radiologist did the scan. He kept saying things like “You have beautiful anatomy” (presumably to be reasssuring), but I also keenly heard the other things he and the head of the ultrasond department were saying to each other…words like “calcification” and phrases like “Is that it?” and “Is that one on the isthmus?” It was during this ultrasound that I knew with certainty that I had cancer or some other serious condition. Two or three times the radiologist said, “I’m sorry this is taking so long. It’s just that you have such beautiful anatomy,” and if I hadn’t been nervous about what he was seeing in my neck, I would have thought that was a creepy thing to say. I told him, “I don’t need to be anywhere; take as long as you need to.” As I turned my head to the far left so he could position the wand to get a closer view of the right side of my neck, the first hot tear of this kind rolled over the top of my cheekbone into my left ear.
I had an appointment with the ENT to discuss the results a few days later. I asked my husband to come with me to this appointment, because I had a feeling it would be a biggie.
biopsy
inconclusive
surgery
Diagnosis
Cancer
RAI
Life after all that…
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