my nickname around the house, thanks to my brother-in-law
So, I had this plan that I was going to be keeping a live journal of sorts for the Radioactive Iodine. Then I realized just how boring it was. In a nutshell, here's how my last 4 days have been.
"I Wake up" I say that in quotes because even though my eyes are open, it take a couple of hours for me to actually wake up. Literally.
Eat a piece of candy I have to keep my salivary glands stimulated so as not to damage them with the radiation. Your salivary glands use iodine also. Eat a piece of candy Eat a piece of candy
I eat foodNothing much more to say about that.
Eat a piece of candy Eat a piece of candy
I watch tv/movie or play video games. I would read a book, but that would involve physical movement. Im still so hypo I dont even want to turn pages. Nor do I want to be mentally taxed by reading a book. Daytime tv is mindless enough.
Eat a piece of candy Eat a piece of candy Eat a piece of candy
Eat a piece of candy Eat a piece of candy Eat a piece of candy Eat a piece of candy
I eat food again.
brush my teeth.
consider throwing up from all the candy
I try to convince myself that im sleepy enough to actually sleep.Since im so tired from being so hypo its quite hard for me to actually fall asleep. That and the fact that I have enough sugar coursing through me to kill a diabetic with just my breath. For instance, its 2am now and I want to sleep...but its not happening right now.
So, if you are seven years old thats an awesome schedule. I however, am not seven years old. (My wife says I act like im 15) There is also lots of water and lots of time spent in the bathroom, but you dont need to hear about that. The good part is that I have had very few side effects and the ones I have had have been minimal. I didnt have much throat pain or any other localized pains really. They tell you that you could have throat pain because the radiation is killing off your thyroid but since mine was removed completely, all I have now is an empty space that I use as storage for chewy beef snacks. I was hoping to have some pains around my collar bone areas since my doc said I might still have some infected lymphnodes in that area but I dont think it hurt there. I had a bit of a head ache on day one, but not much more than that. The hardest part about all of this has been trying to avoid my wife. Literally. I have to stay atleast 6 feet away from her until about day 5. There is good news however....
Today was is my last day on the LID diet and come kick off (im a rabid LSU football fan) i will drowning myself in a bowl of piping hot queso and chips. I also get to go back on my hormone tomorrow which is arguably the more exciting part. im not sure what my TSH number (in a nutshell its a gauge for how hypothyridic one is) is anymore, the lady at the radiology place said she had never seen a number so high in her 15 years. (it was high enough that the scale either broke or the scale stopped counting. im not sure which.) Im so ready to have energy again.
Thats about it. I just wanted to write something short for a change to let everyone know whats been up. I sound like a broken record when i say this, but thank you. To all of my friends and family and anyone else who has said an encouraging word to me, it means the world to me to think that your thinking of me. It really is overwhelming to me.
Until next time, just let your SOOOUULLLLL GLOOOWWWW yall.
Some of my friends with more discerning palettes than I, have made the suggestion that I use this LID diet as an opportunity to travel down culinary roads that were previously unknown to me. That I should finally end the feud between my sense of taste and the produce aisle. I told them i would think about it. And I did.
For about a second.
Then I put on my best Rex Kwon Do pants and roundhouse kicked that notion in the face!!
Starla would have been proud of me.
Anyway, I really did consider eating more veggies and if I ever have to repeat this whole process, I might actually go through with it. However, there are a couple of things that stand in my way. The first is the fact that I don't really like many of them, the second is that I don't know the first thing about preparing them. Also, I promised an LID junk food blog.
As a fat guy, you know i loves me some junk food. It has been said that I have yet to meet a partially hydrogenated processed food stuff that I didn't like. If you have been reading this blog though, you already know that the LID will not suffer such fare as it tends to be crammed to the brim with potentially iodized salt/sea salt or soy and dairy and pretty much everything else I'm not allowed to eat. If you are a newly diagnosed Thyca patient, then chances are you will have to do this diet at some point. Don't freak out though, seriously, you're above that. Instead, I'm gonna show you some stuff that I have found that has made my life over the last 19 days a little easier.
After what seemed like my 27th pound of trail mix, I decided that the the "salty, crunchy" button in my brain wasn't being pushed. Like any good junkfoodie, my first instinct went to potato chips. Since I was already in full on LID mode, I decided that I was going to have to make them on my own. It made sense (to my increasingly hypo brain) and the core ingredients are LID safe, so why not? Well...it didn't work out like I hoped. Long story short, I only succeeded in making flat round french fries and narrowly avoiding 3rd degree burns after my pot of hot oil boiled over. The end result was still deep fried potatoes (or sweet potatoes in this case) and they were tasty but didn't keep well.
Later that week, after one of my many blood tests, I found myself walking around Sprouts. For those of you who don't have a Sprouts, it's kind of like Whole Foods, only the people watching isn't nearly as good and I feel like I can shop there without being a self-conscious tool bag. I didn't think I would ever find a pre-processed potato chip that was LID safe, but as luck would have it I did find these:
Overall, they aren't too bad. A little bland maybe, but doable. It occurred to me that I could apply my own iodine free salt later on and that would perk them up a bit. It wasn't until much later that I realized I could season the chips however I wanted. My current favorite is salt and chipotle pepper powder. I may never buy normal potato chips again. I am Bob Ross and these chips are my own crunchy little blank flavor canvases.
Screw the trees, I'm making happy little chips!
There are going to be times that you want to switch it up though, and if you live anywhere south of the mason-dixon line and west of the mississippi river, tortilla chips are arguably the more important chip. They are indeed, the ultimate vehicle for the topping of your choice. For whatever reason though, I had it in my head that tortilla chips are a flour product, (wrong) so I was delighted to find out that they are in fact, made of corn. After scouring the chip aisle I found these:
I should mention that this particular brand of chips is very local to me here. They are produced about 15 miles away from where I live and I don't know how widely distributed they are. However, should you be able to buy these chips, you should do it. I bought two big bags for around 5 bucks. Seriously, only jerks who hate money and use it to set fire to orphans wouldn't buy these.
As much as I like these particular chips, it annoys me that I cant bathe them in my favorite chip dressing, queso. (that's cheese dip for you folks in places that get snow) I'm sure some of you are asking why I don't just season them like the chips above or pair them with a freshly made salt free salsa or something like that. I would respond by saying that my brain is mostly mush and just the simple act of existing is tiring at times to me now. To remedy this situation my wife and I emptied about half a bag onto a baking sheet, juiced a lemon lime all over them and then dashed them with kosher salt. Bake them until things start to get brown and crispy on the edges, and you have an awesome little snack. My point here is these chips are legal to eat on the LID right out of the bag. I find that after a quick toasting I dont really need anything else, but if you are on the LID (and also if you aren't) feel free to top them however you want.
So good I forgot to snap a pic until they were almost all eaten
Happy that I had the stuff to meet my chip quota, I made my way to the front of the store and stumbled upon a snack-ish food that i had not really ever considered, sesame sticks. They look like something you might put on or in an asian style salad or something like that, or as my friend put it, "looks like a bag of turds." (Yup, those are my friends.) I turned my attention to the labels and found an unsalted variety that fit my prerequisites and was cheap enough to take a gamble on. As it turns out they were pretty good, though they give me heart burn if I'm not careful with them. Again I took License to ill season these to my tastes, that being No Salt Tony Chachere's. I snapped a pic of the sesame label for you:
These little things really are quite decent (if you like turd shaped sesame) and I plan on trying out the flavored versions as a football gameday food this fall. A pound of this stuff goes a really long way, and at $4.00 per lb its hard to beat.
So at this point you are probably saying, "Wow Nick, thats awesome that you have spent so much time on a food that provides so many empty calories! But, I'm bored with chips. What other kinds of junkfood alternatives have you wasted invested time and money in?"
Im glad you asked.
Again, if you have to be on the LID it can be quite easy to read the "what not to eat" part of the diet and get hung up on it. I know i did for awhile but thats because "going hypo" makes you a tad bit, um, testy. (Read: assholish) When I decided to read the "allowed foods" part I discovered that on can have diet colas! Which is good because I live smack dab in the middle of Dr. Pepper country and I do enjoy one from time to time. Be mindful of colas or dark sodas (or "pop" for you yanks)because even though you can have them, the diet prefers you to have ones without caramel coloring in them. You can also have candy (as long as there is no Red Dye #3 in it) such as gummy bears or marshmallows. So if you are a candy person, have fun with that.
I have to admit to being a bit bummed out when I read that I was not supposed to have chocolate, but my homie and fellow Thyca superstar Radioactive Girl dropped a little tip on me. She said that if I could find a substance called "pareve" that I could indeed have chocolate. Being the uneducated gentile that I am, I admit that i thought that pareve or parev (both seem to be acceptable spellings) was a kosher chocolate of some kind. This is not necessarily true. Pareve seems to be a label for a certain class of kosher foods. They contain neither meat nor dairy. It was with no small amount of excitment that I found this on the kosher part of the shelf at my local mega grocery store.
After eating one of these delectable little cookies, I imagined that a Kit Kat and one of those really cheap sugar wafer cookies (the kind that you probably only had at your grandmas house) had a sordid love affair that was both passionate and yet doomed to fail. It would never work between the two confections. On was a fairly major celebrity, the other spent its time attracting ants in the bargain bin of the local drug store. I have to think both parents were a little dismayed when they discovered they were having a child. In the end they decided to turn the kid loose to fend for itself and what we ended up with is what happens when we let children name themselves. A really sweet kid with a really stupid name.
Never let a child name itself
So there you have it. Those are some of the things that I have been eating to help keep my stomach sane while the rest of my brain and body go on walkabout. There have been a whole list of other foods that i have enjoyed and I'll be sure to share all of that with you once I see the light at the end of this particular tunnel.
speaking of, by the time you read this i should know whether all this worked, or was for naught. I had my blood test to measure my TSH level today and i should know by tomorrow if I am all set for my RAI treatment. Ill be sure to keep everyone updated on that. Thanks again for reading and supporting me. I greatly appreciate all the comments Iv'e been getting on here and in person when I see people.
It's at this point I want to say thanks again to Radioactive girl for her support and advice. If you are a Thyca patient/survivor or even if you aren't, you owe it to yourselves to become familiar with her story. You can read her blog HERE.
By the way, in case you missed it at the top, this is what Roshambo means.
Your move LID.
[EDITORS NOTE: feel free to click the text links that are embedded in the text. The are meant to help explain something I feel might need clarification. They are not ads.]
If your response to watching the Tin Man perform horrific surgery on Santa Claus, while Billy Mays tries to sell him a magic lamp, is to see how long you can balance a book on your head...perhaps you need to seek another line of work.
I'm 12 days into the LID diet while im typing this, and unfortunately there may be no end in sight. As the title implies, I screwed up. I have been taking a medication called Liothyronine which is a thyroid hormone. As far as i know, its different from the hormone that I will take regularly (Synthroid) once i get past the RAI. (In case you are just joining us, RAI=Radioactive Iodine.) Im pretty sure my doc told me that the Liothyronine is much faster acting, and to be used as a way to alleviate some of the symptoms that i would have after going off my main hormone. That should mean it gets in and out of my system faster right? That's how i understood it anyway, i could be wrong about it. Geeze, hows that for an opening paragraph? Im sure it was both compelling AND rich, right? Ugh.
Are you still with me?
Good. Anyway, my stupid rookie cancer patient mistake came when I discovered that I was supposed to stop taking it when I started my diet and as I said at the beginning, I'm 12 days into it. I don't know how far it will set me back but I feel like a total dweeb for screwing that up. I'm supposed to take a blood test later this week, so ill be able to see what the damage was.
What a total dweeb might look like.
As far as the diet goes, I'm getting better at it. As in I'm getting better at figuring out how to make up some fried goodies to eat. I'll expound on that more in a minute, but first I need to crack open my dome and let out some of the things that have been swirling around in there.
I want some of you to try to balance a book on your noggin' while you read this...
Look, I know that I should be taking the opportunity to broaden my culinary horizons by trying out new foods. Bravely sailing my grocery cart into the uncharted aisles of the produce section or some such nonsense, but let's get real for a moment. Let's all remember that I've gone through a relatively crappy couple of months. I'm sorry, but at this point, I don't really need or want to embrace another major change in my life. It probably sounds like I am whining and overreacting a little bit and that might prove to be true, but at this point these are the feelings I have. Rationally, I know that the diet is only temporary and that soon enough I'll be able to drown myself in delicious cheeseburgers, or slide down a smokey river of brisket and sausage and barbecue sauce if I want. However, it seems like one more stupid thing I have to and deal with, and frankly, I'm running out of patience and energy for this shit. (Pardon my français)
It's been hard enough coming to terms with my cancer and the effects it has had on my life in the past and how it will continue to effect me in the future. Making approximations of familiar foods keeps me happy. Making my house smell like fried potatoes is not only fun, but helps to keep that little Maslow button in my brain pushed. Once I put some distance between me and my surgery and recovery, ill try to get back into a regular diet and exercise. I feel like i have to because, I've recently read that my type of cancer recurs in 20%-30% of folks who get it once. That's terrifying to me. (Sigh) I currently have youth on my side even though the lease is running out on it. I still have time to rectify most of my lifestyle mistakes. It's hard though, to suddenly change gears in the middle of a life that is already on cruise control. In previous posts I've mentioned the Body For Life diet and i plan to return to it once I'm able. In fact, I'm kind of excited about it because I anticipate much better results once my hormone situation is back on track.
In a lot of ways I am still trying to wrap my noodle around my current situation. It has been both good and bad talking to other Thyca survivors/patients. It's been good because you finally realize that there actually other people who have been through what you are going through, people who can validate your feelings, both physical and emotional. If you are a newly diagnosed patient, or if you are a family member of one, please seek out as much help like this as possible. I know it sounds cliche, and it is, but other patients are your best resource as far as what to expect on your road ahead. Those of you who have helped me, and manage to read this, I want to say thanks to you. You have been great and I hope one day to pay forward the help and support and knowledge that you have given me.
On the other hand, it's been scary to talk to these people because I am seeing for the first time just how big a deal this thyroid cancer thing really is. Its like my job.
Er, that sounded bad. let me explain.
For those of you who don't know, I work at a local television station and I told some of the folks that I work with that it's like the first time you realize that hundreds of thousands of people see the work we do. That the shows we do actually manage to escape outside of the walls of our building. Every time I screw up, a boat load of people see it. If I stop to think about that, it can be paralyzing. That's the kind of thing I felt when I realized how widespread thyroid cancer is. It suddenly ceased being a local/nick problem and I felt simultaneously empowered with new and better information yet, had become much smaller, and in some ways much more powerless against such a beast. I can only imagine how other folks with worse cancers handle this. Its hard to imagine that you can beat such an animal when so many others have struggled so greatly with it.
Even Debbie Downer thinks I need to lighten up.
You know, after re-reading that last paragraph it seems like I might be a little defeated, but I'm trying to keep my head up. Despite the severity of my cancer, I still have a great prognosis. My doctors say that there is no reason that I shouldn't recover fully from this and and at this point, I have to trust them. I have to trust their remedies and solutions to my particular problems. I have to keep in mind that for as much that has gone wrong, there has been a lot that has gone right for me:
The surgery went fairly well. There were some complications and the recovery was hard but considering the complexity and sheer length of the surgery I say it was a win.
I still have all my structures and functions that run through my neck. I can shrug my shoulders and my face doesn't look like Sloth from "The Goonies. That means no nerve damage. Yay for not looking like Sloth.
I can still talk. This is a biggie, considering that my right vocal chord was encased in tumor. (i read the surgical notes the other day, and that's the word he used.) It has been a long time coming back, but I can say that I have seen great improvement in the last couple of days. I finally sound a little more like myself.
A large part of the cancer is gone. Hopefully. My doc says that he is going to hit me with a fairly heavy dose of RAI which will hopefully (again) kill of the rest of my thyroid tissue/cancer in my body. There's a lot of hope goin on here.
I have a great support system. This is arguably the best thing for a cancer patient to have, and I'm blessed. I have had the greatest support from friends and family. I get a little overwhelemed when i think about it too much. Once again, to to all of you I offer an extremely heart felt thanks. I know it seems like I do this at the end of every blog post, but I cant say it enough.
Wow, this post really got away from where I wanted to go....
Enough said.
Alrighty then, now that I got all that off my plate I feel better. I was planning on making this a post about the ways I've discovered to make and eat LID safe junkfood, but it turned into this. I'll post that next time.
There's nothing like a Sweet Cuppin' Cake™ in the morning...
You're welcome Annette.
That's right kids, I was told that i would be doing the LID diet for about 2 weeks, and we are at the theoretical half way point. Ive spent seven days on this thing and i know all of you are just chomping at the bit to know how it has been so far. right? RIGHT?
In an unsalted nutshell, its been ok. Mostly.
Before i talk about my diet impressions though i feel like i should impart some info to the folks who need/want it. Im sure that some of you are probably tired of hearing about what i can and cant eat so if you want to skip this next part, then keep on scrolling down.
Stop when you see the dog.
After reading some of my past posts, I realized that i have never really described the exact details about this diet. So, for those of you who have managed to find this post and have been newly diagnosed with Thyca (that's what the cool kids call it) or have to go on a LID diet for any other reason let me cut and paste for you;
From the Thyca cook book, page 9:
• This is a Low-Iodine Diet, NOT a No-Iodine Diet or an Iodine-Free Diet. The goal is under 50 mcg iodine per day. • The diet is for a short time period, usually for the 2 weeks (14 days) before a radioactive iodine scan or treatment. • Avoid foods high in iodine (over 20 mcg per serving). Eat any foods low in iodine (up to 5 mcg per serving). Limit the quantity of foods moderate in iodine (5 to 20 mcg per serving). • Read the ingredient lists on labels of packaged foods. Check with your physician about medications you’re taking.
At this point you're probably saying, "ok that's cool, i just need to avoid iodized salt right?" In response, i would cut and paste this:
Not Allowed— Avoid These Foods and Ingredients
• Iodized salt, sea salt, and any foods containing iodized salt and sea salt. • Seafood and sea products (fish, shellfish, seaweed, seaweed tablets, carrageenan, agar-agar, alginate, nori and other sea-based foods or ingredients). • Dairy products of any kind (milk, cheese, yogurt, butter, ice cream). • Egg yolks or whole eggs or foods containing whole eggs. • Bakery products containing iodine/iodate dough conditioners or high-iodine ingredients. Lowiodine homemade and commercial baked goods are fine. • Red Dye #3. (E127 in the United Kingdom) • Most Chocolate (due to milk content). Cocoa powder and some dark chocolates are allowed. • Some molasses (if sulfured, such as blackstrap molasses). Unsulfured molasses, which is more common, is okay. Sulfur is a term used on labels and does not relate to iodine. • Soybeans and soybean products such as tofu, TVP, soy milk, soy sauce. The NIH diet says to avoid some other beans: red kidney beans, lima beans, navy beans, pinto beans, and cowpeas. • On some diets, rhubarb and potato skins (inside of the potato is fine). • Iodine-containing vitamins and food supplements. • If you're taking a medication containing iodine, check with your physician.
I remember looking at that list and wondering what the hell i was going to eat for the next couple of weeks. Thyca.org was nice enough to provide that info as well.
Allowed Foods and Ingredients
• Fruits except rhubarb and maraschino cherries (with Red Dye #3 or E127 in the United Kingdom). • Vegetables: preferably raw or frozen without salt, except soybeans and (according to NIH diet) a few other beans. • Unsalted nuts and unsalted nut butters. • Whites of eggs. • Fresh meats up to 6 ounces a day. • Grain and cereal products up to 4 servings per day, provided they have no high-iodine ingredients. • Pasta, provided it has no high-iodine ingredients. • Sugar, jelly, jam, honey, maple syrup. • Black pepper, fresh or dried herbs and spices. • Oils. All vegetable oils, including soy oil. • Sodas (except with Red Dye #3 or E127 in the UK), cola, diet cola, non-instant coffee, non-instant tea, beer, wine, other alcoholic beverages, lemonade, fruit juices. • Read the ingredient list on all packaged foods.
So there you have it,all nicely cutted and pasted for you.(NOTE: yes i know i spelled it "cutted". It was on purpose. Leave me alone you grammar nazi.) That last line is really the best advice of all. Be very mindful of the labels, if you are in doubt, put it down and find something else. If you are like me, you are not going to want to do this diet for longer than you have to, so follow the guidelines closely.
Blog Dog says "YOU should stop scrolling here!"
At this point, i was planning to show you a bunch of pictures of the foods Ive been eating, but since I'm a jackass, i somehow managed to accidentally delete all the pictures on my phone last night. Which sucks because i had all these really cool pictures of brands and boxes and whatnot, but ill have to retake them, so look forward to that.
This picture space is intentionally left blank.
The diet itself has been fine for the most part. I haven't really had the urge to cheat on it, even though i cant drive past Burger King after work without wanting to punch his stupid plastic face in. I hate the way he tries to woo me into his dismally decorated restaurant with a flame broiled siren song that only my nose can hear. I dont even care for BK that much, but when that scent hits the Jeep, i think twice. Other than that though, I feel good. I'm eating foods that are healthy for me and surprisingly, I have found things that i like! Things that i may eat when im not on the diet. I'm very happy to say that i don't have to eat just rabbit pellets and cardboard. As it turns out there are some pretty good recipes in that Thyca.org cook book. The Pot Roast has been a revelation!
I have found some stuff that isn't on the list i supplied above, but if you look at the ingredients of various recipes and get a little creative with your foods, you can find some gems. i suggest you look into it if you are a picky eater like i am. Here's a few i found;
Coconut milk. Just try to go easy on it, unless you want to spend a lot of time in the bathroom.
Homemade Potato chips. if you cut and fry/bake your own chips and use some LID safe seasonings it makes for a tasty little treat.
PRO TIP: If you have just had a thyroidectomy or any other type of surgery on your throat, chances are your vocal chords are weak and screaming will not only be damaging but also quite useless since no one can hear you anyway. To avoid injury and embarrassment, try not to start a grease fire in your kitchen like i almost did. Keep an extinguisher, or big box of baking soda near by just in case.
Fried Chicken. Haven't tried it yet, but i think that i could use a LID safe chicken breast, matzo meal (crumbs) and egg whites and some olive oil(?) and pan fry the chicken. Just remember that you need to limit yourself to 6 ounces or less. I know that's not much, but at least its fried chicken.
Again, i will do a supplementary post with pics of the foods and brand name stuff that i have found so people can look for it in a store near them.
The crappy part about this whole diet thing is being "hypo." The longer i go without my thyroid hormone, the worse i will feel. "Hypo" is short for hypothyroidistic (i think) and its what we thyca folks use to describe the fatigued, craptastic feeling you get when you are on this diet. It wasnt too bad a couple of days ago, but its starting to get worse now. I am really starting to notice some symptoms that i haven't had in the past. I am much more forgetful than i usually am. There are many times where i have to really stop and think about what i am doing, lest i forget why i'm there. I have had to ask people several times to repeat themselves and honestly, its annoying. Ive got other symptoms too, fatigue being the most pronounced one. I feel sleepy all the time. Its like i wake up in the morning, but i don't. I usually wake up to take my meds and then i pretty much just sit there for an hour or more trying to decide if i'm gonna go back to sleep, or if im up and should try to do something. I find that if i make myself get up, and move around a little bit, that it makes the rest of the day not so bad. I have managed to avoid the depression that some people seem to get, though i noticed that i have much less patience for things than i should. I snap at people over stupid things. I think thats part of the mood swing symptom. If you are one of those people, i'm sorry.
Hopefully, everything will go well, and i can have my radiation as scheduled on September 1st, and by the 7th get back on my Synthroid. Maybe by my birthday on in late October ill be feeling better. Thats the hope anyway.
Wow, this turned out to be a lot longer than i expected so I think I'm gonna wrap this one up. I hope i helped some of you out there, and for those of you that made it, thanks for reading.
Also, ill try to stop starting my posts with song lyrics.
Not glowing, but still waxin' chumps like candles.
I'm gonna have to wait 'till the evening of September 1st to find out though. That's the new, tentative, date for my RAI treatment. (I say RAI, because Radioactive Iodine Treatment is too hard to say in battle.In the future when you see RAI, you will know what i mean.) In all honesty though, I'm really not looking forward to it because Ive read a few pretty terrible stories about some people's experiences with it. Some people get really sick and puke alot, some people seem to handle it OK. Some folks really like the diet because they lose weight, but some people like me, hate the diet because you can only eat rabbit pellets and cardboard. Non-iodized cardboard only, of course.Then again, some people see their spouse find companionship in the arms of another, and some people ponder if their cancer contributed to the suicide of a loved one. Not so much because of the treatment but the whole cancer thing.... So again, I'm not really sure what to expect, but I'm trying to prepare for the worst.
(note: those last two actually happened. I didn't make that up. Yay internet. -Sigh-)
(nother note: The treatment makes me so radioactive that i have to spend 3-5 days in isolation from all sentient beings. seriously. I cant be around other living creatures lest i contaminate them. thats kinda scary.)
So what is RAI? Ill tell you, but you should read the next part in your best Charlton Heston voice because I'm going to quote now from the thyroid cancer bible, Thyca.org.
"THOU SHALT READ IN MY VOICE, YOU DAMN DIRTY APES!"
From the Book of Radioactive Iodine Chapter1, Verses 1-3
...And lo, God spake unto the stricken and unclean. "Thyroid cancer patients with papillary or follicular thyroid cancer often receive a holy dose of radioactive iodine (RAI) about two months after their surgery in an attempt to smite (ablate) any remaining thyroid cells in their bodies." The people heard the news, and it was good. Then God sayeth unto them "In preparation for an RAI scan or RAI treatment, patients are usually asked to go on a wicked and depraved, low-iodine diet (LID). The diet is to prepare for the RAI." The people heard the news, but weren't so impressed anymore. God thus stammered and went on to spake "The stricken follows the diet when preparing for RAI either by temporarily stopping levothyroxine (withdrawal) or by receiving injections of Thyrogen (recombinant TSH) while continuing on levothyroxine." Upon hearing of their loathsome futures, those who understood what these largest of words meant, were tempted to tell Him to go to Hell, but then they remembered they were blessed! They recalled that their cancers weren't likely to slay them. Unlike those unfortunate souls with breast cancer or pancreatic cancer, or any other fast-moving aggressive cancer. He looked into the minds of the diseased and saw the momentary flash of annoyance and then acceptance in their eyes and spake unto them for the last time. "Blessed be thy purpose of a low-iodine diet! Rejoice, as it is to deplete the body of its stores of iodine and thereby, increase the effectiveness of the radioactive iodine scan or treatment. The premise is that when the radioactive iodine is administered, the thyroid cells will 'suck' up the iodine because the body has been so depleted." The words fell upon the ears of the people and they heard it and it was good. Ok, it wasn't really THAT good. It was really kind of a holy pain in the ass, but they would deal with it.
It says that. Really.
Since Ive had a lot of time on my hands recently, I've been reading about iodine and its role in the body. As it turns out, its a pretty important substance. I'm gonna quote now again, but this time its from an anti-cancer website anticancerinfo.co.uk:
"For over 100 years iodine has been known as the element necessary for thyroid production, but its other functions have largely been ignored. Iodine is found in each of the cells and adequate levels are necessary for proper immune system function. Iodine contains potent antibacterial, anti parasitic, antiviral and anticancer properties. It detoxifies the body of heavy metals and toxic halides such as bromine, fluoride and chlorine derivatives. It is suggested that iodine is important in the process of apoptosis, (natural cell death) and in destroying cells that represent a threat to the body, like cancer cells and cells infected with viruses. (Miller 2006)"
Seems like this stuff is pretty important doesn't it? The website goes on to describe how in the past 30 years, people in the U.S. have decreased their iodine intake. I know none of you are going to read the actual site, even though you should, so I'll paint a picture for you....
If America had Facebook in the 70's this totally would have been her profile pic.
She was super excited to put them on...only they didn't fit. Too many pot brownies and the growing prevalence of fast food in the previous decade had made her ass too fat. The Doctor said that one way to help her out was to get her to eat less salt. America wanted to look awesome in her new shiny pants so she obliged and did indeed eat less salt in the coming years.
Success right? Well, sort of. As a people,the U.S. managed to eat less salt and in doing so, we decreased our iodine intake by 50%. While less salt seems to have helped hearts, iodized salt was and still is our main source of iodine in our diets. We all seem to be getting enough of it to keep most thyroids happy, but according to the docs cited on this website, all of the other organs that need iodine probably aren't getting it. I know I'm getting a little off my original point here, but I thought I should drop a little bit of knowledge on the substance that will make my life miserable soon.
Seriously, if you have any interest in learning about iodine (other thyroid cancer patients, I'm looking at you here.) you should really click that link and read up.
All that being said though, it still seems like RAI is a pretty genius way to treat the cancer. Along the way, some friggin smart doctor(s) figured out that they could Trojan Horse the radiation into the iodine and it would kill off the thyroid cancer cells while leaving other tissues relatively unharmed. My surgeon said that they were trying to find other cancers that would be receptive to this kind of treatment. I hope they find some that are. For all my bitching about it, its still much easier on my body than the treatments for other cancers would be. I really do feel lucky that I don't have to go through repeated radiation treatments or have the kinds of chemo that other cancers require.
So, the next step for me is my diet. I'm not looking forward to it, but this did start off as a diet blog, so i guess its good that i finally have a diet to talk about.
As always I want to thank everyone again for their continued support and love. I am truly spoiled to know people such as all of you. You guys are the ones who are making it easy for me to keep my head up. So thank you again. I am realizing that other Thyroid Cancer folks are reading this, so to them i say thank you for the kind words and i hope that my little blog about my experiences about it help you out too.
I think that's about it for me for now. Thanks for your time.
Hey there, its me again. I know that most of you know what has been going on, but for those of you that don't, i ll let you know whats been up with me
In a word, Cancer.
That's whats been up with me.
Those of you who read the last blog i posted know that i had just discovered that i was suffering from some thyroid issues. As it turned out, it was a little more serious than that. Shortly after diagnosing me as being hypothyridic, the doctor decided to do an ultrasound of my thyroid to make sure that nothing was wrong with it. That led to them finding some suspicious areas and that led to a biopsy. I was told not to worry, that only about 4 percent of these things turn out to be cancerous and i remember thinking that 96% was pretty good odds. I should have played the lottery that day...
My cell phone rang at about 8:30am which is well before i am normally awake and i heard the voice of my good, but annoyingly indifferent doctor. He was saying something about biopsy results and papillary something and other big sounding words. I was still fairly bleary and only processing about 20% of what he said. At some point I'm pretty sure he paused, and i said "what" and that's when he dropped the cancer bomb on me. In hindsight i think it might have been a good thing that i was not fully awake when he told me because hearing that you have cancer at the age of 30 is kind of rough. Anyway, after he hung up i took a few moments to sort of consider what he had said to me. I then called my parents and called Becky and everybody was surprised and upset.
Like this. It landed like this.
Of course Becky rushed home from work to be with me and later Alden, my brother in law joined us. I sat there that morning with them and we talked about how all this might go down. Alden knew other folks who had gone through this type of thing before, so he was doing the best he could to let me know it wasn't the end of the world. As our little impromptu meeting ended i decided to call the doctor back and ask him to repeat the stuff he told me since i was now very much awake. I put the phone on speaker so everyone could hear it, and the smallest part of me hoped against hope that i had maybe misheard him earlier that morning. Nope, i still had cancer. I thanked Alden for coming over and crashed back down on the couch again. At this point, i admit that i was upset, but i was sort of ok. When i collected my thoughts a little bit i sat down to do some research on my disease.
PRO TIP: if you think you might have any kind of serious illness, what ever the hell you do, DO NOT look it up on the internet. Nothing good will come of it. In my case there are 4 different kinds of thyroid cancer, and one of them is absolutely horrible and almost always fatal. You can imagine where my mind went with that.
These guys are nothing but fear peddlers.
The next couple of weeks were emotionally up and down. If i thought about it too much i would start to freak out a little bit. All in all though i think i managed to keep a fairly positive outlook on the whole thing. Its not like i had a really aggressive cancer or anything. What i had was extremely treatable and chances were that i would recover and be just fine. Since I'm a lazy person, i was just dreading having to go through all the crap that i knew was going to happen. Like the surgery and the recovery, and the diet and the radioactive iodine treatments, endless blood tests.....blah blah blah.
I was right to dread it though....
Fast forward to July 13th when i actually had my surgery. I really don't remember much of it. I know that we got to the hospital early in the morning. So early in fact, that the damn doors to the surgery center weren't open and we had to walk around the entire hospital to get in. (Honestly, is it too much to think that if the surgery center schedules you to be there at 5am that maybe the doors to the surgery center be open at or before 7am?) Once we got checked in i remember that i really wasn't nervous or anything. Once my name was called we went in, and i changed into my surgical gown.
Side note: Is it only me or does it seem like hospital gowns are designed to be both physically and psychologically uncomfortable?
I got on the bed and stared into the stupidly bright lights and waited. Various nurses and doctors came by and it was pretty much the general pre-surgery dance. Ill tell you, it just never gets old verifying my name and birthday to every single person who opens the curtain. I know its for my safety and all but for the love of all that's holy there has to be a better way...anyway, before i knew it, it was lights out.
Those of you who contacted Becky on that day probably know more about my surgery than i do but what i do know, is that it took waaaay longer than they initially thought it would. The doc thought the surgery would be 4 hours or so, it ended up being a 10-11 hour surgery. The cancer was apparently much worse than anyone thought and it was wrapped around seemingly every structure in my neck. Oh, and at some point i think i had a lung collapse and things got a little scary. (I'm still not too sure what happened there, all i know is i ended up with a chest tube and a hole in my chest that is still healing.) All in all though, I have to thank god that i had such a good surgeon because he managed to save all of the important structures. He managed to avoid all the major nerves in my neck, and anatomically speaking, i still have both my vocal chords even though cancer had wrapped its way around one of them. When he was done, he had taken out my thyroid, a couple of parathyroid glands and a boatload of other cancerous tissues along with it. I guess the surgery went relatively well which is good since waking up from that surgery was a different story....
I honestly don't know how long it took me to wake up after surgery but i woke up in the intensive care unit, and i was not too happy to discover that A) i still had a breathing tube in me and B) i was restrained. I'm still not terribly sure why i was restrained, but i remember fighting it pretty hard. And everything hurt regardless of the fact that i was on a morphine drip. My shoulders hurt, my hips hurt, my neck hurt (imagine that) and the worst part was i couldn't say anything to anyone because of the breathing tube. It was a really long first night as i recall. I couldn't really sleep even though i was exhausted and on boatloads of painkillers. My biggest obstacle to sleep was this freaking alarm that went off when my oxygen level got too low (i think). I guess i wasn't breathing deep enough and that put me at risk for pneumonia or something. On some level i knew that that alarm was for my safety but the fact that it went off every time i started to drift off pissed me off. The nurse wasn't helping either when he told me that i would have to breath deeply for several hours before the breathing tube could be removed. So i breathed. Eventually the tube did come out and the restraints came off and i was able to get some sleep.
Ill be honest, i was pretty blurry there for a long time. My recollection of the time line may be off if you talk to Becky or my mother but this is how it played out to me.
The ICU is a very strange place to recover in. Chances are that you are on a lot of drugs and things that would otherwise be sort of normal are amplified and can be a little surreal and scary. There were a lot of strange sounds and alarms and other noises. I would occasionally hear other patients moan in pain or whatever and I remember thinking at one point that that's what a Medieval dungeon would have sounded like if it had electricity. Some poor guy that i never got to see, had the absolute most annoying monitoring system on him. Every time his body did something unusual or tried to kill him the machine would "play" various notes. That's the only way i can describe it. It would play a different little tune every time his body acted up. I remember telling my dad that it was terribly disrupting when i was trying to sleep and he reminded me that the poor guy was probably close to death. I felt bad, sort of.
When i closed my eyes i could actually sleep, which was good, but every time i moved i hurt. I remember the nurse coming in to roll me on my side to reduce the possibility of bed sores or something (I'm still a little unclear about it actually) and it was just horrible. I couldn't lift or support my head because i had three brand new incisions in my neck, if i put any pressure on my shoulders it was horrible. In fact i had a hard time justifying the pain in my shoulders to myself. Does that make sense? The neck pain and some of the other things i could justify and accept as pain i should be feeling based on the procedure i just had, but the fact that my shoulders felt like they had been torn off my body and then somehow reattached with burning nails was beyond me. The pain and weakness in my left shoulder was so great that i couldn't lift my hand off my body for the first several days. Even now, i still cant lift anything heaver than a gallon of milk with my left arm.
Things did sort of get better though. I got used to the hurty parts on me and I was finally able to hold semi coherent conversations with people who were in there. One thing that i do regret is that apparently i had a cute girl for a nurse and i was too drugged up to remember or appreciate that. Oh well. I was finally released to a private room sometime around noon a couple of days after my surgery. I think.
If you are still reading this i can go ahead and skip through the next part of my recovery. There were lots of naps, and morphine and golf. The British open was going on and frankly it was kind of nice to be able to watch that for hours on end and forget about the fresh holes in my neck. The last real bombshell came on the day that I was released.
I went in for surgery on Tuesday and was released to go home on Saturday but before we (the family and i) left to go, my surgeon came in to check up on me one last time. He told us that everything seemed to be healing up ok, and that i was lucky since i had probably had the cancer for as long as 15 years. I couldn't help but take that as confirmation that i really did have the fat, slow kid of cancer. You know, the pudgy kid in your 1st grade class who always had crumbs from his last meal on his shirt? The kid and who was also kind of irritable and didn't do anything very fast and whined a lot? And his name was probably something unfortunate like Percy, or Duncan or Seymour? Yeah, my cancer is like that. To be honest i am lucky that it is so un-aggressive and slow moving. But 15 years, that's crazy.
This is how i imagine my cancer. Man boobs and all.
So, that's whats been up with me. Ive been home for the last couple of weeks trying to heal up and things are starting to get back to normal. I still don't have a proper voice which is a huge concern for me as I'm sure you all know. Just the other day, the doc told me that either it would come back, or it wont. Thanks doc. While i am able to get up and get around more than i did just a week ago, i still don't have a lot of stamina, and i get tired very quickly if i have to do anything very physical. For instance, i put away the dishes out of the dishwasher and had to have a nap after that. But again, overall things are improving.
So whats gonna happen now? Well that's a good question. The next couple of weeks will be preparation for the radioactive iodine treatment which will hopefully kill off the remaining cancer in my body. So far i have had to come off of the synthetic hormone that i was on and in a couple of weeks i will have to go on an iodine free diet. Ill blog about that sometime soon because its kind of crazy. After i hit a TSH level of 30 (thyroid stimulation hormone) i will have to have a radioactive Iodine treatment which will render me bedridden for 3-5 more days after. The crazy part of that whole thing is that i will be so radioactive that i have to stay 6 feet away from living creatures for 3-5 days. I have to stay away from children and pets for a week. Hopefully that will kill off the remaining cancer that the surgeon didn't get and i can be pronounced cancer free sometime after that. I'm sure that after Becky reads this, she will correct it since she has been my schedule maker/keeper, but that's the general plan for me.
At this point, I need to take this time to thank everyone for being so incredibly supportive to me and my family through this time. Seriously you guys, the support and love has been overwhelming and i don't know if i will ever be able to fully say how much i really appreciate all of you, but i do. I don't use this word very often, but i truly feel blessed to be surrounded by so many folks willing to to go out of their way to help me out. So, thank you, thank you, thank you so much for everything. Someday ill figure out how to repay all the kindness you guys have shown me.
I think I'm gonna wrap it up since this is the 4th time I've written this thing and i want to get it posted before i change my mind and rewrite it all. Again, thanks to all of you for everything and please feel free to email or text or whatever if you have any questions about anything.
