I’ve knocked around how to talk about this radiation therapy thing for a while. It needs to be done. I have people telling me how ‘brave’ they think I am, and I think maybe some folks are under the impression that I’ve soldiered through some long, drawn out, painful, sickness inducing ordeal, and that just isn’t the case, folks.
I popped a pill. That’s all.
There was some preparation ahead of time, to be sure, but I didn’t have the same type of radiation used for more aggressive or prevalent cancer. I didn’t have to don one of those mesh masks and lie on a table while radiation was burned into my body. I had no chemotherapy.
I just popped a pill.
A radioactive iodine pill.
I-131 isotope, to be precise. This radioactive isotope is designed, in my case, to attach itself to, and kill, any thyroid cells remaining in my body after thyroid surgery to remove the gland. Any cells left behind could be cancerous, or could become cancerous. Best they be gone, as a precaution.
There are four types of thyroid cancer. As I’ve said before, the one I have – Papillary Thyroid Cancer – is the least likely to be aggressive and spread, the easiest to treat and cure, and the radiation oncologist told me it’s more of a nuisance than anything else.
Oh yeah. It’s been that alright. Beginning with The Diet.
The Diet is the First Circle of Hell.
The radiation oncologist told me about The Diet.
It had to be followed for two weeks prior to taking the pill. It is a low iodine diet. NOT to be confused with low sodium, though you have to avoid processed foods containing salt, because you don’t know if the salt used was iodized… so you have to pass. You have to lower your iodine intake as much as possible and let your body deplete itself of iodine, because thyroid cells absorb and process iodine. They needed to be eager to absorb the radioactive iodine that would kill them.
Read labels sometime. Even MILK has salt in it. Even FAKE MILK in the health food stores has salt in it. Sea salt, at that. A no no.
Even if it didn’t, dairy was a no no anyway. Iodine is in the solution used to clean components of automatic milking machines, and gets in the milk used for drinking and creating other dairy products.
Anything with a high iodine content was a definite no no.
No seafood.
Seaweed is high in iodine content, so I couldn’t have that. So what, you say?
Did you know seaweed is in a LOT of grocery items? It’s disguised on the label as an ingredient called ‘carrageenan’.
I couldn’t even have my fru fru creamer in my coffee because even though there’s no dairy in non-dairy creamer – there is carrageenan. Go ahead. Read the label of your coffeemate in the fridge. I’ll wait.
See?
The doc gave me a list of foods that were okay – that looked like it could fit on a 3 x 5 index card – and told me if it wasn’t on the list – don’t eat it.
That pretty much left me with this:
and this: (with no milk, mind you!)
I’m a foodie. Cancer wasn’t killing me. The Diet was killing me.
I went into the doc’s office for some paperwork, and the desk clerk asked me how I was. I told her I was fine but The Diet sucks a major one.
She laughed and said “Yeah, it’s not real fun, is it?”
Another guy at the counter says to me “Vodka has no iodine content. Just sayin’.”
Ha! Someone else with my sense of humor! Just drink myself silly for two weeks till I can eat regular food again!
I had fun with it – but I had my moments too.
My first visit to the radiation oncologist’s office gave me pause.
Just the word ‘oncologist’ began to hit me. Cancer doctor. I had this? Cancer? Me?
I walked in and saw an office full of patients in various phases of cancer treatment. Some were younger than I was, but emaciated down to nothing, cancer and the treatment to fight it having whittled them away to skin and bones. Skin that had that pallor about it that cancer patients get. Women in turbans, bald underneath. Some so weakened they were using walkers.
Brochures in racks with titles such as “When It’s Time For Hospice Care”.
Unnerving place, this.
Was this my future, I wondered? I looked, and pretty much felt, healthy right then… but would I soon look and feel like some of these other people? Would I be sitting there at some point with a calm, serene, accepting expression on my face, knowing my time in this office was nearing an end, and not because I was well?
Once I took the pill, I’d have to stay isolated away from people for a week. I’d have to work from home. In order to do that, because HR departments are the epitome of anal, I needed a letter from the doc stating it was okay for me to work from home… which it would be. Barring any violent reactions to the radiation, I’d be perfectly healthy enough to work from home. I just couldn’t expose other people to my irradiated body.
I asked the doc’s office to fax me a letter I could give to HR stating her okay with me working.
It came. I opened, I read:
“blah, blah, blah, diagnosis: carcinoma of the thyroid, blah, blah, blah…”
No… wait. I don’t HAVE cancer. I HAD cancer cells in my thyroid and it was now gone! No thyroid = no cancer!
Moments like that… unnerved me a bit. I shrugged them off as best I could.
The most frustrating part of the two weeks on The Diet, however, was finding out on my own, instead of being pointed there by one of my docs, that there is a wonderful website dedicated to people who have thyroid cancer like me, and have gone through the same treatment plan I’ve gone through – and they’ve written a low iodine diet cookbook. It’s on the website. In printable PDF form. And there’s real food in it.
Real. Live. Food.
Amen and amen.
If, God forbid, you or anyone you know ever needs this treatment, and enters this First Circle of Hell called The Diet, please, for the love of all that is holy, point them here:
I’m a WordPress dummy. Every time I try to make a clickable link on one of my blogs, it doesn’t work like it’s supposed to. Sorry. Copy and paste. You can do it. I know you remember how.
Now you know all about The Diet. Not a lot of fun, but I could have things so much worse.
Next time, I’ll tell you about stage two of the treatment – The Shots
The Second Circle of Hell.
The fun just keeps on comin’ folks!
Flirting With Cancer 
Oct 30, 2010 @ 21:33:50
so what kind and stage of cancer do you have that that put you on the low idodine diet? I have ablasion 3 or 4 times and never had to go on a diet and I had stage 3 pappulary how do you spell that? Cancer I’m an 8 year survivor- nuclear scans freak me out….
Oct 30, 2010 @ 21:41:48
I sometimes wonder how different a person I might be today if there was this ‘electronic journaling’ available 31 years ago for me. I did actually write — with real pencil or pen for a while… I did it to vent, but there was no one to vent to… known or unknown. Through the years since then, and with this Internet thingy, like with our blog, and many others that are out there, it seems that this relatively new electronic sharing has actually become part of the therapy, part of the cure, part of the healing, part of the whole recovery process.
Keep writing, Julee, and we’ll keep reading. đ
Nov 06, 2010 @ 21:19:36
Kim – I had no clue! Congrats! đ
Tom – I’ve thought of you and your struggles often since I was diagnosed and taken strength and courage from the stories you’ve told. You might have never known it but you were paying it all forward đ
Nov 17, 2010 @ 07:28:28
I so appreciate your page…and if I may ask, how old are you? The reason I ask is that there seems to be very few people I know that are near my age and have this condition/disease. I had no symtoms. I had a complete physical and everything was normal. The nodules were incidently found when I had a CT scan a year ago after a breast core-biopsy which turned out to be benign. I so thank and praise the good Lord for his blessings for it was such another nervous time for me and my family. I continue to have faith in Him each and every day.
I too, recently had a total thyroidectomy (11/01/10) because of papillary carcinoma (< 1 cm.) on the left isthmus. I am still waiting to hear from my surgeon regarding my pathology results, but he did say that there was another very tiny lesion also on the left lobe. The protocol then was to remove the right lobe as well. (By the way, It wasn't until a total of 5 fine needle aspirations were performed out of a total of 11 nodules present in both lobes, to find the papillary cancer in one of the tiniest nodules tested. My endocrinologists told me that the Lord was watching over me, so that it could be treated early!)
Spent 9 days in the hospital, for I was experiencing low calcium symptoms such as muscle spasms, numbness, and tingling, all at once. Calcium count was about 5 and at the time of discharge, it was at 6.9. I honestly felt like I was dying through my whole stay, until the calcium was finally under control. I am a 54 year old woman, have 4 grown children, and 4 grandchildren. Have a loving and supportive husband…but I am so nervous about the next step, and that is that I may have to take the radioactive iodine pill to what my doctors claim will be the "cure" to this disease.
My fear is that in some rare cases, there's a risk in getting "leukemia" from this RAI treatment. There is also the risk of salivary gland disorders/problems because of RAI. I also read that most of the leukemia cases involve thryoid cancer patients older than age 45 because the bone marrow takes longer to recover from the radioiodine at that age and older. That is my concern.
I am a fairly healthy person, although I have led a sedentary lifestyle over the past 2 years because of this disease. I do however plan to continue to eat a healthy diet as needed and to start a regular exercise regimen and active lifestyle in order to keep cancer-free as well as possible.
I now take calcium supplements and levothyroxine to make me feel better, and although I feel fine now with the exception of occasional anxiousness, I am wondering if I should just hold off on the RAI treatment and and take a chance on living out whatever years I have left, instead of taking a chance to get completely cured of thyroid cancer at the risk of getting leukemia…which might mean a shorten life span. I am praying to God on this…so that I make the right decision.
My surgeon also mentioned that one of the lesions, he found was so close to the trachea. He is urging me to get the RAI treatment and not think twice about it. I will be seeing him again next week to get my pathology reports and then start working with my Endo and Internist.
I appreciate anyone's similar story, and input. Does anyone have any similar experience?
Nov 17, 2010 @ 19:58:35
Hi Bevanne, glad you like the blog, and thanks for dropping in and commenting – hope to see you around often!
First of all, to answer your initial question – I turned 53 last Friday, so I was operated on, diagnosed after the fact, and given RAI at age 52. My thyroid was removed in May, my surgeon saw cancer cells, confirmed a week later by pathology.
I didn’t have any problems with my surgery or hospital stay. I was pretty lucky. I spent a day in ICU, another day in a regular room, then I was allowed to come home. I didn’t even take much pain meds. They kept giving me way too much in the hospital. I’ve got a high tolerance for pain and a low tolerance for drugs, so I spent most of my stay trying to sleep/walk off the effects of morphine I didn’t need or want – but had a hard time refusing because I couldn’t talk for a while and make my wishes known. LOL.
I am assuming, since you had calcium level problems, that your parathyroid glands were taken as well. I was lucky. My surgeon was able to save all mine. I have some residual things that I don’t know yet if I’ll ever be rid of – but I’m rid of that pesky thyroid that caused me so much trouble for so many years, so I’m happy.
I had RAI therapy in August. It wasn’t a lot of fun – especially the two weeks or so prior. I did have just a tad bit of a queasy stomach for the first couple of days after taking the pill, but other than that, and the expected swelling and soreness of my salivary glands (suck lemon drops and massage them to make the RAI move on through them and get to the leftover thyroid cells!) I did okay with it.
I’m having some salivary gland problems that I’ve just noticed in the past week, but I have an appointment with my ‘regular’ doctor in the morning, so I intend to ask him about it.
I’m having some other symptoms that I need to ask him about as well – but I am not sure if they’re related to my thyroid problems – I have another health issue or two I’ve had to address in the past year or so.
I’m not, by any means, a cancer ‘veteran’, knowledgeable because I’ve been here done this for a long time – so I’m just learning a lot of things myself.
The leukemia connection was news to me – so I googled it. I have an endo I’m seriously thinking of replacing. He behaves as if I am on a need to know basis and he decides what I need to know. I’m not real keen on that. I like to know all the angles.
I’m not real concerned about leukemia. It’s a rare possibility and I refuse to live my life in fear. I’ve just as much chance, I imagine, of getting hit by a truck walking across the street. Life holds no guarantees for anyone, cancer or no. I consider myself a survivor. So should you! đ
Jan 06, 2011 @ 00:46:34
Hi Julee! Thanks for the reply. It was so comforting. It’s been 2 months since my Thyroidectomy and have opted to get another medical opinion about my treatment. My surgery pathology report revealed two micro lesions. One was .03 cm and was deep in the left thyroid, the other was .06, also on the left lobe, and was right along the margin near the trachea. It is for this reason that my surgeon and endo want me to get the RAI, a 100 millicuries dosage, and then get a body scan 10 days post. My internist would like me to change my diet to Vegan, detox, then prepare my body before I do the RAI…just to make sure my body will be raring and ready for the treatment and recover from it quickly, hopefully without side effects. My next question is, is 100 millicuries a standard dose for “remnants”? Is that a high dose? It seems it is the same dosage for everyone with cases like mine, based on the form I was given.
Thank you for the kind words of support and confidence. I feel comforted to know that your cure experience and success with this disease gives hope to me and others who get nervous and afraid about the journey and pray that we all too, will be cancer survivors just like you.