How to survive post-RAI (radioactive iodine treatment) era

To be honest, I don't remember when exactly I had the RAI. 2010..? 2011? No, maybe it was in 2012.

Memories fade and I don't remember every single detail. I do remember some though: feeling sick to my stomach, taking three showers, because I felt I had to scrub the iodine out of my body. I drank a lot of water. I remember the plastic zip-lock bag, where my iPhone, the only link to the outside world, was sealed in.
I remember the nursing staff leaving my food tray outside the room and I didn't know it was waiting for me there. Needless to say, I was pissed off with that.

Now, years later, I've suffered from tooth decay and cavities, which I've never had before the RAI. I've looked after my teeth very very well all my life, visited the dentist, dental hygienist etc.  To my horror the dentist in Dubai last year discovered a cavity, the first ever and I'm close to 40 years! I wasn't supposed to have cavities or any sort of dental issues.
I'm convinced it was the RAI that changed something in my saliva... or did some other kind of damage.

I don't know what else it did to my body, but the teeth: please look after them. Make sure you do it even better than before and visit your dentist and the dental hygienist. Ask about dental hygiene before and after the RAI. Even better, keep a notebook with you and write your RAI doctors' and nurses instructions there in a language you understand.
I don't remember anyone mentioning dental issues, but if they did, it's long forgotten.

Eat well, sleep well, even after years from RAI.

Try to attend the follow-up appointments, so you are not left in the dark.
I made a decision not to have more scans, endocrine appointments, oncology appointments etc. My primary care doctor monitors the thyroid function tests and we are okay with that... but I am planning to ask for an appointment for endocrine follow-up next time I see my GP. Years pass by and even my conscious decisions and opinions change.

By the way, if you think counseling would help you post-RAI, please please get a referral. It has helped me tremendously. So many emotions surface just after RAI and it's so helpful to talk things through with someone.

Thyroid cancer revisited

List of unwelcome people, life events that suck and general needless stuff is endless. Cancer tops the list and will always have its safe Top 10 spot. Year ago I was undergoing series of tests (yes, those that have no end in sight) and was preparing two thyroid whole body scans and the radioactive iodine treatment. Year older and wiser now I can say it was "not that bad". Not nearly as bad as when compared to leukemia treatment. Not as bad as having long term illness that has no good prognosis, ever. 
But yes, of course it sucks. People around me had to watch me turning into a monster: all my favorite foods were on "banned" list, and lack of Synthroid just made me look like .. well, a monster. Puffy face cookie monster. Not horror movie kind of monster. Good thing was that it was gradual, not an overnight change. I did not really see- or want to see- anything being wrong. Mornings were hard, as if I had eaten junk food and been binge drinking and had not recovered from hangover. There is nothing make-up can't fix, so I thought, and since thyroid hormone was on a very low level in my blood, I was happy. Felt quite normal (tired normal) and drove to work.
It's only when I got there, I literally wanted to lie down on the floor and not get up at all. It was cold all the time, so I thought. When my menstrual period came (I so wish it had not!), I did not know whether the bleeding would ever stop. I did not even want to get up and walk for the fear that I would just bleed and bleed. No one warns you about these things- if someone did, or if I read it in somewhere, that information was long gone at the time when I needed it. So, in case it happens to you ladies, you know now.
Forewarned is forearmed. Don't worry if you forget, just go home and rest. Well, after the RAI, my period disappeared for four months. Fabulous. For the first time in years my hemoglobin was somewhere above 12.

Comparative study moment: which is worse; being off Synthroid or having to stick to low-iodine diet? Easy one! 
If I was off my meds, but could still eat whatever I fancied...
If I was on my meds, but had to become low-iodine kitchen guru...
Both have their ups and downs. I'd go for the 2nd option.
Where is the third option- meds, diet and THYROGEN? 

I've really not read many positive experiences being on Synthroid. Low iodine diet works for some ( I guess it's either that or starve). I don't spend much time in kitchen, but asked people their thoughts about low-iodine cooking. Completely eliminating salt was useful when my face started getting puffy (that is when I realized it was happening. Colleagues said later that no amount of make-up, cucumber face-masks and others could cover the damage). There were days, more toward the end, when I felt like one wrong word could start a war if I don't get the taste of that particular food I want. The truth is one bite would not have been enough. Yes, I remember having spaghetti and garlic bread once (twice...? but since underactive thyroid gland causes memory lapses..), and ate them without any guilt feelings. Nearly licked the plate so I could get all the sauce.

Year later I don't know if any research has been done about low-iodine diet- is it really the key to the success of RAI? Despite of my spaghetti dinner, RAI in my case was successful. Thyrogen still isn't available everywhere, and I would be so reluctant to have any scans done now without Thyrogen.

In hindsight it all sounds so easy. Should have done this, that etc. One thing is for sure: without support from family and friends it is much harder so do your best and don't push them away.

Today is a good day. I have not thought about cancer at all. I've not stood in front of the mirror examining the scar in my neck, because it is barely visible. I haven't talked about cancer, because it's not part of me and I've conquered one of my biggest fears.
Isn't that what they say: "Cancer, you chose the wrong bitch!"

Rest in Peace

Two people died, just few days between them. Thousands of miles between them.
One was a bubbly happy young lady, whose blog I have been following for quite some time now. She put up a real fight against cancer, but unfortunately this is how it ended. She is no longer in pain, and is surely watching over us now. Her blog was a great inspiration to me, uplifting, cool, funny, everything! Despite of cancer, she still made every day count. Rest in peace Michelle. You are very much missed.

Another person was someone I knew a lot better, having been working with him for 3 years. Him not being there is a great unmeasurable loss, and grief and sadness can't be described. He was a good man, dying in the midst of doing something he felt passionate about. There is still certain amount of disbelief and many many questions, which will probably be left unanswered forever.
I was lucky and blessed I got to know him. He is.. was a person with big heart, compassion, sense of humor, approachable, always smiling. If he was not smiling, he just needed a word of encouragement  and he was ok again.
It is a great loss. He is very much missed, and there are days when I just can't believe he is gone. Rest in peace IS.

RAI

I'm so incredibly tired, physically, mentally. 2012 has been challenging. My father died in summer. My grandma died later in the fall. My horse died 1 week and 1 day ago.

Cancer relapsed and I am going for RAI on Monday. I don't handle being isolated very well, but perhaps this is my chance to learn.

Not everything in 2012 has been bad. I have made good friends with K, fellow cancer patient, one of the bravest people I have ever known. I have made lots of progress on the new- not so new anymore- horse and that is very rewarding. I started new job in spring, and have enjoyed it tremendously.

I had a great vacation in Wyoming in August, one of those experiences I always wanted and needed.
I also had an awesome visit at MD Anderson cancer Center- can you really say it is awesome? As soon as I stepped into the hospital, it was as if it was not a hospital at all. I remember the kindness of people, staff, patients. I remember the aquarium and delicious yummy Sara Lee red velvet cupcakes.
I had great time in Herrmann Park. 

I don't know what next week brings along... but it is one step at a time. I'll be sure to update the blog and report all about what RAI really does to you. Another survival guide!