Public Service Announcement: RAI

Ok, call me the RAI Nazi, or whatever you will, but I feel very strongly about this and am deeply saddened (and mad many times) to read that people often don't take the necessary RAI precautions. When I say people, I mean both doctors and patients.

Before I come off as doctor bashing, it is important to note that both of my parents are MD's.
Okay if you don't know my "story", here's the quick version. (Bear with me, it's hard for me to not be long winded, but i'll try). Thyroid cancer, two tumors (both over 4cm), one Papillary, one Follicular variant. Had a TT, and large dose of RAI (154mci). Accidental pregnancy and sweet baby girl delayed my second scan. So, instead of doing the scan 6 months after my first one, it was instead 13 months later (time to have baby and breastfeed for about 2 1/2 months). This is where I am now. I had my RAI tracer dose (less than 5mci) on Wednesday. Today is Saturday and I am STILL in isolation.

Which leads me to my frustration about precautions.

 

Okay so with my first large dose, I was in isolation for a FULL two weeks and when I did go home I had another couple of days of limited contact. I tried to maintain 2'-3' away from my kids, slept by myself, and didn't hold them for more than 15 minutes at a time. Now, to some that may sound craaaazy, but nope. It wasn't. I know this because I went to the Nuclear Medicine department several times and had them geiger me. My levels were not safe until I went home (and the limited contact was necessary still per their recommendations). You can't dispute the numbers. I personally don't feel that it is "safe" until my body is emitting background numbers (about .02) up close. These numbers confuse me b/c they change (the decimal) depending on how sensitive they set the geiger. I'll give you my example of this later in this post.

Now, could some people who had the same dose as I did go home sooner and be fine? Absolutely! As you know (or will find out), our bodies get rid of the radiaiton in a variety of ways. It comes out in your pores, your sweat, your pee, tears, and yes, even your poo. It sloughs off on your skin as well as being disappated into the air. The half-life of radioactive Iodine is 8 days. So, if you didn't get rid of it at all in the aforementioned ways, and you had a dose of 100mci, you would be down to 50mci in 8 days, 25mci in 16 days, and so on. Luckily though, we DO get rid of it in other ways though! lol! You can help this process along by drinking lots of water and getting that through your system and showering frequently, etc.

Also, some people just naturally seem to hold on to it longer than others. I drank like a horse and my body still held on to it. It seems to be happening the same way this time. So, here is my example of my numbers this time around. My dose was 4.5mci, I believe. I took it on a Wednesday. My scan was 48 hours later. After the scan, I had her geiger me.

• At about 4' i was at background (0.02)
• one foot closer it doubled (.04)
• then at about 6" or so, I was 10x background (.2)
• and right up next to me was even more (.3ish)

What does that mean to me? That at 48 hours, it was NOT safe for me to be closer than 3' to adults for an extended amount of time, much less my children. It would not be ok for me to go home and hold my baby (4 months old) to feed her a bottle, to give my son (not yet 2 years old) his daily breathing treatment, or snuggle up to my 3 1/2 year old in bed at night (she still sleeps with us).

What really chaps my hide is that the doctor's office said I would be FINE to return home 24 hours after my dose, "because it is so small". Really? How am I fine to return home when I can't get my scan until 48  hours later and in order for this scan to "work" your body has to be emitting enough radiation for the machine to pick it up. In my book, if my body is emitting enough radiation from that, then I sure as heck don't want to be  holding my babies!! When I told my doctor's office that I have very young children, they said "oh, 48 hours would be better then.". Ok, thanks. However, if I told them that I am on day 4 of not being with them they would think I've lost my marbles and am being excessive. Call me what you will, but to me I am being safe. When it comes to my family and my children, I prefer for them to not be exposed to any unncessary radiation. It's just not something I care to do. The wonderful lady in the Nuclear Medicine department was very helpful and agreed with the precations I've taken this time (and last). I tend to go with her recommendations over my doctor's anyways since this is HER job, day in and day out.

Originally, I had planned on going home this evening (Saturday, after 72 hours), but after having my levels tested yesterday and watching the needle jump up and knowing my numbers, it just isn't safe yet. I could go home late this evening probably, but still would need to maintain the 2' rule and sleep alone. Well, I'm not good at keeping my kids at bay and let's face it, they miss their mommy and all three of them are snugglers. So are my dogs. Keeping 3 babies and 2 dogs off of me just wouldn't happen. I'm sure I could easily keep the husband away though, lol. He has been a rock star and has been caring for the kids solely since his mom left after taking care of them for the first day and a half. He's pooped and is ready for me to come home. I think he struggles with this b/c he doesn't fully understand it. I actually think most people don't truly "get it" unless they experience it first hand- as in being the patient.

I wish our bodies emitted a green light or something when the levels were too high and that when it went away, it meant we were safe again. It's very hard not being able to see this radiation.
It terrifies me to think about how many people are out there and haven't taken proper precautions either because they were given bad advice, or ignored good advice. Is it inconvenient to make the arrangements? Yes! Is it a hardship on yourself? Yep! Is it hard on others in your family? You betcha! Is it the end of the world? Absolutely not!

YOU are the one in control of what you chose to do. Again, call me crazy if you want to for being so passionate about this, but I just feel compelled to educate others as best I can- by relating my personal experience.

I'm sure I've forgotten something, but this definitely goes over the main points I wanted to express. Please feel free to comment if you have any questions or comments. You can call me crazy and it won't ruffle my feathers. I've been called much worse!

Easily distracted

I suffer from a *touch* of the ADD. This is flaring up right now. Badly. I feel like a kid who is easily distracted.

Friends like Addison and Jenny are not helping this matter. I'm trying to work on a very educational and beneficial blog post and they keep making my phone ding. The dinging doesn't help my focus issues at all. So, off goes the volume and on goes the focus hat. I really should get a hat I can put on to focus... Hmmmm.....

Edited to add: Turning the volume off only makes the ding change to a vibrating sound. Still quite distracting actually....

Oh yeah, that cancer thing.

With the pregnancy and birth of Bailey, my cancer treatment was sort of put on the back burner. I was closely monitored by my Endocrinologist throughout the pregnancy, getting labs every 6 weeks and making adjustments to my meds as often. He told me all along that he would give me 3 months to breastfeed, but that was it and then we needed to get back to my treatment. The usual protocol for thyroid cancer and treatment is that you first have your thyroid removed, then you do the RAI (radioactive iodine) treatment. This ablation dose is based on many factors and there's a formula for it, but basically they go based on the size of the tumors, the amount of cancer, the type of cancer, and your body weight is also factored in, I think. My dose was 154mci. Two days after you go in for a body scan (I talk about all of this in my previous cancer posts). Typically you will go back 6 months later for another scan and another dose of RAI. This time around though, you take a much smaller dose, just enough to show up on the body scan. For instance my dose this time was less than 5mci. I am writing this post as I am in isolation again and have some free time on my hands!

Basically the timeline of events you can expect for your first scan/ treatment after your inital one is this: (Disclaimer: This is, of course, based on my personal experience. As we all know, all doctors are different and I've found recommendations can vary GREATLY from doc to doc.... which I find to be quite annoying actually).

1. Office visit to talk about the upcoming treatment and what to expect as well as dates for when to get a pregnancy test (if you are of child bearing age), stop meds (Synthroid), start  meds (Cytomel, if you doctor does this, not all do), when to get your Thyrogen injections (If it is available and if your doc does this. At the time of this post there is a world-wide shortage and I was unable to get these. Therefore I had to go through withdrawl... which is God awful). When to get your TSH tested, when to stop Cytomel, start the LID, get a neck ultrasound, get RAI tracer dose, go into isolation (and for how long to exercise precautions), stop LID, get a body scan, have your thyroglobulin tested, start Cytomel again, schedule a follow-up appointment to go over all testing results, and finally when to re-start your Synthroid and get on the road to feeling HUMAN again!

2. If you are of child-bearing age, you will have to get a blood pregnancy test to be sure you are not pregnant. I will call this blood draw #1. Brooke insisted she go with me for this so that she could hold my hand so it wouldn't hurt! LOVE her! Daddy took the other two kids and Brooke indeed held my hand, averted her eyes, and told me it didn't hurt. Hard as she tried to emit the positive, painless vibes, this actually hurt like hell! The lady must have gone through my vein because it burned like fire for several hours and even into the next day. Awful.

3. About 6 weeks before you are scheduled for the RAI tracer dose, you will go off of your thyroid replacement meds. I was on Synthroid. Lucky me got to stop these on Thanksgiving... thus beginning my journey through Hypo Hell.

4. The day after stopping my Synthroid, I was told to start taking Cytomel. Synthroid is a T4 medication and Cytomel is a T3. I really am NOT at all versed in all of this business, so the quick and dirty is that in theory when they take away your T4 (Synthroid), but add in T3 (Cytomel), it *should* help you feel less crappy. Some people seem to really notice a difference and love being on it. To be honest, I didn't feel like it did anything, but really can't be sure. I have to take care of myself and three children under age four as well as a house and husband the best I can, so that in and of itself is just plain exhausting! :) Most nights the baby sleeps in 3-4 hour chunks so I'm not sure what feeling rested really is anymore, lol. You will typically take Cytomel for 4 weeks while your TSH is increasing. From what I've been told, this wears off quickly so you are told to take half of a pill 2x a day. This may be the smallest pill I've ever taken, so half of it is minute. Oh and apparently this can cause difficulty sleeping as I quickly found out, so instead of my original times, I was doing 9am/9pm, I changed it to 7am/2pm-ish.

5. You will continue on this 2x a day Cytomel routine and then in 4 weeks stop taking meds all together. This is when you will begin your Low Iodine Diet, or LID for two weeks. I  will be doing a separate post all about this diet, so stay tuned for that. You have done this before, when you did you RAI ablation dose. For me this was just over a year ago, so I had forgotten how difficult it was... sort of. I knew it sucked. The further I got in to it, the more I remembered. And, just like last time, by the end of it, I was OVER it and pretty much survived on low iodine banana oatmeal cookies alone. Both times, I dragged my heels and moaned and complained about how terrible it would be. Then, I sucked it up, faced the facts that I HAD to do it, I had no choice in the matter, and I tackled it in true Tracy fashion. I made a list, found some good foods and recipes and stocked up. I was over-zealous at first and made lots of different things. Heck, the thought, "this isn't so bad, it's very healthy, I can do this long term" even crossed my mind. Then that thought left and has not returned. I will try to eat and be more healthy, but not nearly as limited as this diet is. A girl needs her cheese and coffee creamer, yo.

For my readers who have not gone through this, here is the rundown of what to avoid:

 

By now, you are going to be feeling really crappy and really hypo. I suggest making a shirt with the image below. Especially for our poor spouses. Bless their hearts.

To review the hypo symptoms:

This also helps understand the T3/T4 thing:


"Going Hypo"

Our bodies require thyroid hormone (T4); a hormone taken in synthetic form (by a daily pill) once the thyroid has been removed. The body also requires T3 which it converts from T4. Without thyroid hormone, the body produces an increasing amount of thyroid stimulating hormone (TSH). An elevated TSH of at least 30 mIU/L is needed for the RAI treatment to be effective. To achieve this rise in TSH, patients may be instructed to stop taking their thyroid hormone replacement pills.
Becoming hypothyroid by hormone withdrawal, involves stopping levothyroxine (T4; the drug’s brand names in Canada are Synthroid and Eltroxin) for approximately 4-6 weeks prior to RAI treatment. During the time that levothyroxine is not taken, Cytomel (T3) may be prescribed. Cytomel is a fast-acting (and fast dissipating) form of thyroid hormone used to minimize the symptoms of hypothyroidism during hormone withdrawal. Cytomel is stopped approximately 2 weeks prior to RAI treatment.
‘Going hypo’ is a gradual process with symptoms increasing slowly over the six week period. The longer the patient is off of thyroid hormone, especially during the last two weeks prior to RAI treatment when no thyroid hormone is taken, the more likely the patient will experience symptoms of hypothyroidism.
Some Symptoms Associated with Hypothyroidism:
*Tiredness, loss of energy, weakness
*Trouble sleeping, nightmares or excess sleep
*Puffiness especially in the face and bloating
*Loss of ability to concentrate, memory loss, absentmindedness
*Weight gain
*Anxiety, panic attacks, irritability, mood swings
*Depression
*Dry eyes, skin and hair; hair loss
*Change in menstrual cycle
*Joint pains and stiffness, muscle cramps
*Intolerance to cold
*Constipation
*Tingling or numbness in fingers or toes
*Itchiness
*Ringing in ears
*Slight changes in eyesight

6. After nearly two weeks on this diet, you will go get a neck ultrasound. They will use the results of this ultrasound, your throglobulin levels (should be 0 since we have no thyroid- if they are elevated it would signal a problem), and the body scan to figure out if everything is gone or if there is something they need to look into further.

 (^ actual machine and bed used for my u/s)

(^ not me)

Then you will have your TSH tested and hope, beg, pray that your TSH is high enough to go ahead with the RAI dose. I've had two endo's. My first one wanted it to be at least 40. This one wanted at least 60. Mine was 58.1 when I had it drawn on a Friday, but my RAI was scheduled for the following Wednesday, so 5 days later, and was well over 60 by then! Whew! (FYI- it is important to know your body while going through this. Some people take a while for their TSH levels to increase, and others will spike quickly. Mine have always gone up quickly. Knowing this, and knowing that we were QUICKLY approaching the end of the year, and the end of our good insurance plan, I pushed to have mine checked a week early. If it was high enough I would be able to move all of this up a week, thus keeping it in this calendar year. So, I started my LID a week early (after only 3 weeks on the Cytomel), and was on it for two weeks before testing my TSH. Worst case scenario in my book was that it wouldn't be high enough, I would have to wait another week (and do the diet another week), and be pushed into a new year and new (crappy) insurance plan. Thank GOD, my plan worked (I did this the first time around as well, by the way). This is blood draw #2.

My little circus accompanied me for these labs, but this was a new experience for all of us.. since the double stroller was NOT in the back of the van! Imagine my shock, horror, and exasperation and making that little discovery in the parking lot! So I, in all of my fatigued and hypo glory, toted the three little ones up the hill, through the parking garage, up the elevator and to the lab. Then back to the car. They did GREAT and we had minimal dancing on tables in the waiting room.

 Brooke was showing off her TWO stickers! They got two for being so good! :)

 
*insert Christmas weekend here* I REALLY wish someone would have gotten this for me for Christmas:

7. If you are able to do Thyrogen injections, you would get these now. You would also not have to do the above withdrawal from your Synthroid (LUCKY!!!). You would go on two consecutive days for Thyrogen injection #1 and then Thyrogen injection #2. But, there is a world-wide shortage of this drug, so I had to go through the full withdrawal. I was scheduled for RAI on a Wednesday, so I would have gone in on Monday and Tuesday for these injections.

8. Okay, at this point you are off of your Synthroid (you would stop this when you do Thyrogen if you get to do that), and you are still on your LID. Now you go in for your RAI dose. For me this was on a Wednesday. You go in, they go over the precautions, you pop the pill (capsule), and leave. You don't pass Go, you don't collect $200, you don't stop and get a drink on the way home. You go straight to the place you have pre-arranged to sit out your isolation. My tangent on this post-RAI isolation to follow...

Down the hatch!

And then you become: 

I REALLY needed to make myself a shirt to wear. I SO would have worn this under my sweatshirt and then taken it off exposing this shirt underneath. That would have been rad. Why are my after-thoughts so much cooler than my real-time ones? Dammit. Ohh how great would it have been to tear off a t-shirt Hulk Hogan style exposing this beneath!?! Gah! Oh well!

Head straight for your safe place. 

These are my isolation digs:

Could be worse, huh?! I'm serving my time at my parents in their guest suite again. It's such a treat, really. The last time I did this, I was here for two full weeks so I packed up my sewing machine and got a lot of sewing therapy. This time I only brought my clothes, some LID snacks, and my laptop. I thought I was only going to be here for 48 hours....
Begin rant: Dear Doctors: Please get your stuff together and talk with the Nuclear Medicine people (Radiation Oncologists & techs) before telling your patients the post RAI precautions. Thankyouverymuch. I was told by the Endo's office that I only needed to be away for 24 hours and that I would be fine after that. Mind you, you don't go for your body scan 24 hours later, you go for it closer to 48 hours later. To do this scan you must be emitting radiation and emitting enough that the machine can pick it up without touching you. So, you tell me how it is ok for me to hold my sweet babies when I am emitting enough radiation that a machine can pick it up. When I said that I have little babies they said that 48 hours would be better. Ok. So, I had planned to go for my body scan and thyroglobulin labs and then was going to go home and take over my mommy duties and Corey was going to return to work for the afternoon. Well, when I went for my RAI dose, the Nuke med person (a wonderfully nice lady, by the way), I was told that she wouldn't recommend being closer than three feet to others, especially children, until Saturday evening at least. And even then, didn't recommend sleeping near or with them. Luckily I can stay  here as long as I need to, so it wasn't really an issue. Corey had to take the whole day off and again, luckily, his boss is understanding. Corey's mom has been a Godsend and came down to keep the kids the first two days. They LOVED having their Nana come stay with them! Now, some people may disagree with me and just go with what their endo says (24 hours), but I am siding with the Nuke Med people here who do this for a living. I'd also rather be overly cautious than not. Radiation freaks me out and isn't something to be taken lightly, in my opinion. End rant.

I took a shower to wash off some of my radioactivity. It was nice not having one or two little people banging on the door screaming, "Mommy! Mommy! Mommy!!" Or trying to crawl under the bathroom door while I get dressed!

(That ^^ is an actual hand of one of my children!)

Since I took a significantly smaller dose of RAI, I didn't expect to have any side effects. Well, I was wrong. I felt fine right afterwards, just like last time. I ate a LID lunch prepared by my wonderful mom. I could seriously get used to having someone prepare all of my meals!!

But, late in the afternoon, I started feeling overwhelmed with exhaustion. Then the nausea hit. I ended up popping a Phenergan and taking a nap at 4:15pm.

 

I skipped dinner and woke up in the middle of the night feeling nauseous again, so I took another Phenergan and slept until 10am. When I woke up I felt a lot better and ate my first non Low Iodine meal of bacon, eggs, toast, and coffee! 24 hours after your RAI dose, you can stop the LID (at least for most doctors).

Had some cookies that I saved from Christmas as a snack (did not eat all of them.... yet!).

And had an awesome grilled cheese for lunch!

Mmmmm! Cheese!!

9. 48 hours after your RAI dose, you will go back to the hospital for a full body scan. (This is what I will do tomorrow morning). I will have her check my level of radiation while I am there as well.

From what I remember last time, this is a long time of laying, and waiting for the machine to move slooooowwwllllyyyy down starting at your head and then going down to your chest. Then they do your  neck for another 10 minutes, I believe. 

10. Then I will go to the lab for a thyroglobulin blood test. This will be blood draw #3.

11. After my scan and thyroglobulin test, I am allowed to start on my Cytomel again, but not my Synthroid. This is different from last time. Last time I started on my Synthroid at this time as well, but this time they want me to wait until after my follow up appointment.

12. The final step in this process, God willing, is a follow up appointment with your doctor to go over all test results. . That way, if something comes back as abnormal and they need to do another RAI treatment your body will already be ready. I may die if that happens though, so be forewarned.

13. If all is well, you will be able to re-start your Synthroid and hopefully be on your way out of this hypo hell.... in 4-6 weeks!

I leave you with one final thought:

God Bless You

Okay, this is funny. I grew up Catholic.

 Well that isn't funny in and of itself, the story I'm going to tell you is. So, I went to Catholic School through 6th grade (the city I lived in at that time didn't have a private Catholic school past 6th grade). Wore the uniforms, went to church every Sunday, kneeled. A. lot.

Went to confession. Was an alter server. Puked in front of the ENTIRE congregation one time as an alter server when we were temporarily having services on a stage in a college auditorium while our church was being renovated. I haven't fully recovered from that embarrassment and have fully developed a phobia of throwing up as a result of that travesty (I'm serious, I'm convinced).

Had communion every Sunday and sipped wine out of the same goblet as the other 2320183 people at church. Forget sanitizer, apparently wiping the rim of a goblet with a white napkin is sufficient germ removal. Went through confirmation and was confirmed. Heck, I even ended up graduating from a Catholic Jesuit university, Marquette.

I don't suppose I was a good Catholic though. To this day I don't really "know" the bible. I am always amazed by the people who can open a bible when given a verse or a chapter and they know where it is, or at least know if it's in the front or the back of the bible. And people who can quote bible verses and such. Cool, but I was never that kid.

 I also feel like I don't know how to pray really. I talk to Him in my head and say prayers and stuff, but seriously (you can laugh, it's ok), I don't know how people stand up and do that. I'm learning though, I think. Catholics do a lot of reciting prayers and to me you sort of lose the meaning that way. This was always our dinner prayer:

So, whenever I'm around someone or with someone and someone prays differently, it always seems awkward to me. Not in a bad way, and not as much as it used to.

Okay, so that is basically my Catholic background. I was Catholic because my parents were. Not a bad thing, but honestly, once I was out of the house, I sort of stopped going to church. I felt like I had done my duty and deserved a break. It's not like I stopped believing in God or anything, I just didn't make going to church a priority. In college I went on occasion, but definitely not on a regular basis.

Fast forward to the present. My husband and I talked about things, I actually think he brought it up first, once we had our first child. We wanted to go back to church and have our kiddos grow up in a church. He isn't Catholic, and I guess I technically am/was, but I didn't feel like I was anymore. Not getting in to why, I just didn't feel connected to it. So, we went to a bible church. Holy cow. What a difference! I loved the music, and enjoyed the sermons. It was good stuff and I sort of liked it. It was a HUGE place and we really liked the preacher, but he ended up moving on to a different place and my husband wasn't as fond of his replacement. So, we moved on to a smaller church. We also liked this one and loved the music. The pastor is young and energetic, and funny. It's good stuff. We went regularly for a while, then would take off some time after the next baby came. And then the next baby. We just recently started back.

Some things that I'm still not used to:
1. The big screens, electric guitars, drum sets, keyboards, and feeling like you are in a concert. Quite a difference from the music at a Catholic service. But, I love it.

 

2. People singing and praying with their hands in the air. This was new to me and sometimes I feel bad that I'm not moved to want to raise my hands in the air and wave them around like I just don't care. It feels weird to me. I think about how I'm supposed to hold them and would they look weird being up there in the air. Is there a time when you are supposed to do this? Do you use your right, your left, or both? I keep my hands down, usually rested on the seat back in front of me. It's safer that way. This leads me to the next one...

3. The Amen lady.  We didn't have those at my churches growing up. There is one particular lady who goes. to. town. with this. She is full of Amen's, yeses, that's rights, uh-huhs and Praise God's. (I don't think those words need the apostrophe, but they look weird without it.. but they look weird with them too, oh well you know what I'm trying to say).

4. Baptizing adults. In the Catholic church you are baptized as a baby and water is poured on your had. As an adolescent you are confirmed and this is when you make your choice to be a Catholic (although I don't think it is really your choice, it's just what you do). It is strange to me to have adults do this. I haven't seen an adult baptism actually, just some pictures. I should go to one though as I've heard they are very neat to experience.

5. Being saved. This one hangs me up. As a Catholic, I felt like I had a spot in heaven, so to speak. But, now it seems like I have to be saved. Now, I'm not looking for any advice or criticism on this, I'm just in a quandry with it and trying to figure it out. I feel like I'm going to heaven (most days anyway), but it seems like I'm supposed to be saved before I can go.... Towards the end of every service, the pastor has everyone bow their heads and he says a prayer and asks people who want to have eternal life say the prayer with him (in their head). Then he asks people to keep their head bowed and asks the people who asked Jesus into their heart to look up at him and wave at him. He says, "Bless you" and keeps track of how many people have been saved. When he's done he has everyone look up and tells the congregation how many new brothers and sisters in Christ we have. It is pretty neat b/c there's always at least one and sometimes up to 10! So, I'm a nosy person by nature. I always peek. Like last Sunday there were several people who were raising their hands, three of them in the row in front of us. Towards the end of it, he kept asking and being sure he had counted everyone, sort of like an auctioneer at the end of closing on the highest bid (he was up to 8, I think). I was scratching my left eye with my pointer finger and looked up slightly b/c I thought he was done and was about to tell everyone to look up and give us the final count. Well we made eye contact and he added another one to his count!

He also said, "Bless you sister", so he definitely saw a girl that he added to his count. Now, was that girl me, or was it someone behind me?! I thought it was someone behind me.. maybe.. until when I was walking out of church with the infant carrier in my hand. He gave me a fist bump (remember, I said he was younger and cool), and said, "Bless you". Yikes.
So, now I think...

Except I didn't really mean to do that. And I'm still not 100% convinced he counted ME, it could have been someone else. Not sure how to find out and not sure if I need to bring an extra change of clothes to the next baptism service so I can be baptized since that is the next step!