RAI - Day 3, hour 5

At 3pm I was still in debate as to if I should wait until tomorrow morning to take my first dose of Levoxyl since it says to take it on an empty stomach preferably first thing in the morning. But, then again the Levoxyl is what will keep my TSH level down enough to put any cancer cells to sleep. What is more important to me, starting to maintain that level where the cancer will sleep or waiting to take it as directed? I chose to start it today.

Happy to say that my first meal post low-iodine diet was SUSHI! Judy, as promised, brought some over for me around 4pm. I had a California roll and a Rainbow roll. It was a lot, so I had to pace myself as I have gotten sick eating too much sushi too fast in the past (Todai sashimi bday disaster in 2004). It was enough sushi for a late lunch and dinner! Was thinking maybe I'd do Chick-fil-A for dinner since I was having sushi for lunch, but that won't be necessary now.

As I took my first couple of bites of sushi, I started to wonder if the soy sauce was going to affect the absorption of Levoxyl in my body, but what was I going to do, not eat perfectly good sushi, that I have been craving for over two weeks now?!? No way! My energy level is a little better than it was this morning, so I guess the Levoxyl is working. Will see how things go tomorrow as I will start the day correctly with Levoxyl before breakfast. What I'm not too happy about is that I have to take it religiously at the same time every single day. Right now I am waking up between 7am and 8am, but when I go back to work, I'll be getting up around 6am. That means no sleeping in on the weekends. Or, perhaps I could just get up at the usual time on the weekends so I can take the Levoxyl, then go back to sleep. I guess I'll have to figure this one out over the next couple of weeks so that everything flows like clock work when I return to work.

My stomach is still feeling a little upset, but not enough for me to have to hurl again, I don't think. So far RAI Day 3 is going pretty well!

RAI - Day 2, hour 23:37

Well, I think I just threw up the cashews, so I should be Ok to take the Levoxyl at 3pm. And, a brand new Chick-fil-A just opened at the mall, so maybe that's where I should go for my lunch, provided my stomach feels up to it in an hour.

RAI - Day 2, hour 23

Just counting down the minutes now until I can eat anything I want (and start Levoxyl, for the rest of my life). My stomach is still feeling unsettled.

I woke up this morning with a little more soreness on the left side of my neck and just feeling tired. How many weekend mornings in the past have I woken up feeling too tired to do anything? Many. I guess all those weekends I must have been very hypothyroid because just like all those weekends past, I just lay there, staring at the ceiling in my bedroom thinking about whether or not I should get up or just go back to sleep. Sure this morning there were a couple of World Cup games to watch, but I just didn't feel like getting up. Hopefully the Levoxyl will fix it so I never have any more weekends (or weekday mornings) like this again.

Not sure what I want to eat first. Should I go to In-n-Out and get a combo? Do I just want McDonald's french fries? If I go anywhere it has to be drive-thru so I'm not standing next to anyone for too long. I'm so hungry, but I don't want to eat anything my mom would cook, oddly enough. Well, I have a few minutes to think about it. Well, maybe a little more than I thought because I'm supposed to take the Levoxyl on an empty stomach, but I just had some cashews, and then I'm not supposed to eat for 30 minutes to an hour after. Arrrrrgh!!!!!

RAI - Day 2, hour 4

My throat, especially the left side, is starting to feel sore, like I'm coming down with a cold. I was sucking on sour Jolly Ranchers until I accidentally swallowed one, whole. I may give them another go later this evening, or perhaps try a fresh lemon. Rubbing my neck seems to help, temporarily. Earlier this afternoon the area around my scar was red, but I'm not rubbing that area, so not sure what is going on there.

Food. I was tired of eating at 11am this morning, so I was bound to get sick of something today. I've been eating basmati rice with stir fried veggies and portobella mushrooms for lunch and dinner since Sunday night, so I think I'm finally sick of it because the smell of said concoction is starting to make me nauseous. My mom made it for my lunch, but I didn't take a few bites until around 3pm, so it's been sitting there, covered with another paper plate, but the smell was just getting to me. I don't supposed three hours of sucking on Jolly Ranchers helped either. She gave me a ziplock baggie to put it in. I feel bad wasting food, but I think I would've puked if I didn't put it away. I have to keep all my trash, even food waste, in my room until I'm out of isolation, so I couldn't just ask for it to be taken away. So I'm having a fruit plate for dinner - mango, honey dew, strawberries, and raspberries. Only 20 more hours of this crappy low-iodine diet. Judy said she'd bring me some sushi tomorrow. What a treat that would be! Uh-oh...my stomach is starting to feel a little upset now, so that could be bad news for me.

Water intake. I think I've been doing pretty good with the water. I'm supposed to pee at least once an hour to help move the radiation out of my body. Was a little bummed that my pee wasn't glowing bright green yesterday - it would have been a good indicator of how much radiation was coming out of me each time I used the toilet. I guess the glowing radiation stuff is part of Hollywood's portrayal of radioactive substances. Oh well.

Energy level. Tired. Not exhausted, just tired. I've taken a couple of naps today, updated my blog, watched some videos from Kristin's blog, did my laundry, and did a little reading. One of my co-workers, Lottie, sent me a book to read. That was very thoughtful of her. It's called "The Shack". I started to read it, and I like it so far. Sleep sounds good right now.....

RAI - Day 1, hour 20

I've been feeling a little pain along the left side of my jaw/neck area and a weird taste coming from the left side of my mouth every now and then, so I wonder, could my left salivary gland be drying up from the radiation? I didn't start drinking water until 11pm because I fell a sleep. When I got up, I didn't want to drink too much water because I didn't want to be getting up every hour to pee when I should be sleeping, and Frankie might think I could take him out, which I can't do.

At the ThyCa meeting, some of them had mentioned rubbing the area to help relieve the pain and to possibly help move things along in the salivary glands that were blocked up. So, I've been drinking more water since I got up this morning, and rubbing both sides of my neck (don't need both sides to get blocked and dry up!).

Otherwise, I'm still feeling a little tired right now. I'll do my laundry when my parents leave for my dad's Coumadin class this afternoon. Not allowed out of my room right now since the physical therapist is here working with my dad.

RAI therapy dosage

After my Radiologist explained everything to me, I signed a few forms, then was taken to a tiny room down the hall, where the I-131 pills are kept. He confirmed the dosage amount, 148.6 mCi. I had to put on latex gloves, so no residual iodine would be left on my hands. I took a sip of water to help dissolve the pills, then I was given two dark aquamarine colored pills to swallow. Not the most perfectly shaped pills, but they were a pretty color. My gloves were removed, and I was taken around the corner (less people to expose) so they could confirm, with a hand monitor, that the pills had traveled to my stomach.

I was taken back to the first room to sign a few more papers. She asked if I had any other questions. This is when I realized I should have been taking notes when he was going over the water/hydration v. lemon or hard candy issue because I couldn't remember which I was supposed to do and when, so I needed clarification.

Other than that, I go back on Tuesday, July 6 for my first whole body scan (WBS) which will take two hours, then again on July 12 for my second WBS, which she said would take a little less time.

So far I am feeling Ok. I was tired right after I took the dosage, but that's probably due to me being severely hypothyroid and not sleeping more than 4 hours last night (who could possibly sleep well the night before RAI?!?). I didn't throw up my food, another good sign. And, I'm not yet going stir crazy in my 10x10 cell. All good news!

RAI, here I come

Driving to my RAI appt was the first time I've cried about my situation in a few weeks. Started when I gave hugs to my parents and gave Frankie a pat on the head on my way out the door. Three miles away from my house I was crying and driving, which seems to be just as dangerous as texting while driving as I almost plowed into a semi truck while trying to wipe the tears from my eyes. I know, this is just part of my thyroid cancer treatment, but it doesn't make it easier knowing I will pretty much be in isolation for a least week. The Radiologist will be giving me additional info, such as how much longer I may have to stay on the low-iodine diet and other restrictions I may have to follow while in isolation. Wow - I was just told that my dosage is at 1:30pm, not 12pm. Well, they told me not to eat after 8am, so I assumed my dosage was at 12pm. Will see what happens. 

Was able to run a few errands on the way home. As I drove down the street, got a call from Radiology. She said my pregnancy test came back negative (of course), so she was going to go ahead and make my dosage pill for 150 mCi. Then she went over the precautions I need to take to prevent exposure to others, to write down any additional questions I have for the Radiologist, then told me to be back at the hospital at 1:4pm for my therapy dosage.

I had to wait a few minutes for the Radiologist to arrive. It was cold in that room. He explained why I am having the procedure, and told me a few new things about HCC and the therapy that I didn't know:

1. Sometimes HCC doesn't produce Thyroglobulin, the tumor marker

2. If a good thyroid cell is next to a thyroid cancer cell, the radiation kills the cancer cell because it is next to the good cell that was killed by the isotope. I can't remember the exact term he used, but that is the theory. It's not a guarantee, but it usually happens that way.

3. If I get pregnant within the year after RAI, I have a higher chance of miscarriage, but if a baby is carried to full term, the radiation will not have a negative affect on the baby

4. I may start menopause a year earlier.

5. The radiation will stay in my body for a few more months, so I can set off alarms at the airport and boarder crossings. I have to carry a card with me with my therapy info so the authorities can call to confirm why I set off the radiation alarms.

6. Any tears I shed during my treatment will be radioactive. As such, the tear ducts may be affected and close up. If later I notice that my tears run over my lower lids instead of the inner corner of my eye, my opthamalogist can dilate my tear ducts to re-open them.

7. I may experience pain in my cheeks and jaw area (salivary glands affected), or in my neck. In any of these cases, I have to contact my  ENDO.

8. I will have a little higher risk of developing leukemia from RAI

9. It takes 90 minutes for the radiation to be absorbed in my body 

As for the precautions for reducing external exposure to others, his info seemed even less restrictive than everything I've read online and in books:

1. Put all my bed linens and under garments in a bag and wash at the end of the week (not every day)

2. Not necessary to throw out my toothbrush after isolation

3. Ok to throw out my disposable utensils/plates/cups with the trash next week

4. Didn't mention anything about having to shower each day or launder my clothes and bed linens each day

5. I cannot share the same toilet with anyone for a week. Shower and sink are Ok, not necessary to rinse after each use, but the toilet is most important because the primary way the radiation is excreted from my body is through my urine. So, the more I pee, the faster it will leave my body. And of course, flush twice each time.

6. Driving - Ok to drive myself. I should wipe the steering wheel with a moist wipe after so I don't leave any residual radiation on it.

He did stress that under no circumstances am I to prepare food for anyone (or pets, I assume). I asked if I could attend a 4th of July picnic and parade, which is over 48 hours after my therapy dose. He said I could attend, but not to spend more than 5 mins with each person; if it is longer, then stay at least three feet away from that person, and make sure I am drinking a lot of water (porta-potties are Ok to use). Pet exposure - he said the dogs would be fine due to their ages (12 and 13), but the cat would probably be better off being boarded. I think just to be safe I'm going to have the dogs boarded next weekend anyway when my parents are out of town - better to be safe than sorry.

Other instructions:

1. Do not eat or drink anything for two hours after the dosage - best way to make sure I don't vomit. If I do vomit within 12 hours after the dosage, call the Radiology dept so they can come to my house to clean it up.

2. After four hours, start drinking a lot of fluids; I should be peeing at least once an hour, and it should be clear or have very little color to it.

3. After 24 hours start sucking on lemons or hard candies to activate the salivary glands. Fresh lemons is best, just make sure I rinse with water since lemon juice is highly acidic. These two (#2 and #3) are the fuzzy ones for me. I thought this was the instruction, but the tech said she thought it didn't make sense, and it was the other way around (lemons after 4 hours, water after 24hrs). My Radiologist was already gone, so a different one had to clarify. 

That's about it. It's getting close to 5pm, when I can eat and drink something. I haven't eaten since 7:58am, so I'm ready for food. My Radiologist was good at explaining things, but I am glad he took the time to do so and to answer my questions as well. I felt more at ease about the therapy as he talked to me about it. And thank goodness his external exposure guidelines are not as bad as what everyone else was telling me. I will still shower daily, launder my lines, clothes etc. each day, and rinse the tub and sink after I use them, just to be on the safe side. Last thing I need to do is unknowingly expose either one of my parents or our pets. So glad I'm not stuck at home for 4th of July, but I think I still have an excuse to show up, get food, then go home - I'd rather not have to use a porta-pottie. I may even swing by the froyo place to get my own frozen yogurt, to go!