Radioactive Iodine and Whole Body Scan (WBS) ... gee that was fun

Hello to all my fellow followers... today was a great day... It started with cereal... yup a plain ole regular bowl of cereal with milk, the cool delicious refreshing drink who i have missed so... but i am ahead of myself... lets go over the last week or so and see how truly difficult this process is.....

SEVERE HYPOTHYROIDISM AND LOW IODINE DIET

For me the worst things to highlight were:

• Having a "foggy mind"
• unless u experience it, its hard to say or explain.  The best I can do is to say you are watching the earth slowly pass you by.  You can watch and u know what is going on, but you are slow to react to it.  Its i suppose what dementia might feel like except for me it lasted anywhere from minutes to hours.  Sometimes it was only time that went on forever.  Other times, i felt like i was walking in a swimming pool chasing after someone in full freestyle swim.  It was hard in general, harder for someone like me used to a mind that thinks of 100 things all at once.  Used to be so in control ... 

• The Dizziness
• So no one really mentioned that- but i had SO  MUCH DIZZINESS.  At first it was only with standing.  Then with sitting or turning... Then dizzy when i ate or closed my eyes.  Or watched my husband moved too fast. It was like Parkinsons ( and i dont mean to offend anyone or who may know anyone with that terrible disease) but it was initiating ANY motion that was a challenge. To be 30 and struggle just to stand, or take more than 3 minutes before u can take one step.  To move so slowly yet ur mind might be clear as day is such a weird and awkward sensation. 
• Hunger
• I was so hungry for SO MUCH of the day, but I knew I had no metabolism.  I knew i needed very little energy.  and I knew some people could gain even up to 40 lbs bc of how this disease process.  So i choose to sleep rather than satiate my hunger.  Lets face it I cant eat much anyway I was feeling so sick and dizzy just lifting a fork was a hardship at times.  And I had many restrictions on what I could eat (until i discovered the beauty of kosher salt)
• Slowed Heart Rate
• Another interesting aspect of being hypothyroid.  Not everyone will experience this, however I lead an unhealthy lifestyle before this ever started.  My baseline heart rate was 90-low 100s just because of my poor health.  Now as you who have followed along have read, for the last 2 weeks or so my heart rate when laying down miserable is in the 60s.  My heart rate after climbing up the 6 steps to get to my apt after a doc appt was in 70s... and it took so very little exercise or effort to send me into a 4 hour nap... yet another interesting part of my condition.  

The Diet Tips to spread to anyone you might know...

• YOU CAN HAVE KOSHER SALT... it does NOT contain iodine- only pure NaCl 
• Really you can have ANY kosher prepared food- as it also will contain no Iodine
• You can have crystal light and koolaid in the water (its made with Red Dye #40 which is SAFE)
•  Using paprika with lime juice and oil does make for a tasty salad dressing
• Paprika is your best friend
• My fav dish: was to make pico de gallo (diced tomatoes, white onion, diced fresh jalapeno peppers with garlic and onion powder with lime juice and kosher salt all to taste, and fresh cilantro)... to add that mixture after it masurated in the fridge for a few hours to salad or fresh george forman grilled chicken...
• You can have CORN tortilla chips from Trader Joes - only place i found chips with 0 sodium
• if you are diabetic - dont make life miserable before it has to be go ahead and have pasta and rice it is hard to give up salt... its even worse to avoid sugar AND salt

The Whole Body Scan

Things I wished I knew:

• How the scan worked?? - sadly my home hospital scanner had the camera break right before my appointment so i was taken to a sister hospital and yes as an add on which i am eternally grateful for (as that avoided me being delayed with treatment for yet another week which i dont think i could have tolerated)....
• No one ever explained what was about to happen? this was important as without my glasses I cannot see the machine and it turns out the machine MAKES NO SOUND... there is no way to tell when it actually starts (hence when u have to remain still) or when it finished (to know when u are free to reposition yourself if you have to)
• The machine is silent u are placed on a rather narrow table and the camera is set on a timer, there is no sound, no call bell no mic and my test was administered by 4 separate people.  They hit a button and leave the room. The machine just sits and counts the radiation you emit over a 10 min peroid.  There is a quiet beep the machine makes when the timer goes off but i had no idea what that was or meant.  You will be scanned in 8 different places total, each spot was 10 minutes.  After the beep the technician comes in repositions the table and hits the timer again. This goes on and on til all 8 scans are complete.  After the first 5 scans (head, chest, abdomen, pelvis, femur) the camera is rotated 180 degrees to scan the posterior side (thank god you do not have to roll on ur tummy) and they then scan the pelvis, abdomen and head again)... THEN YOU ARE DONE... it takes (depending on the protocol) 1 hr -1.5 hrs total.  I asked for a radio to be turned on again the machine is QUIET makes NO SOUND but it can be terribly hard to sit still that long in silence. 
• I knew i was in place but no one told me that the timer had started (i cannot see it for myself as i didnt have my glasses on) and although terribly uncomfortable i held it in and stayed as still as i could ... i was freezing and in pain not bc of the machine but because of my weight and lying without any pillows under my legs there was tremendous pressure arching my back.
• They didnt realize my discomfort bc it was hard to hear me and i tried when the machine beeped to draw attention to me or my needs but due to severe hypothyroidism and my prior vocal cord issues even without the radio i am VERY hard to hear.  Also if i had known how the machine worked- i would have asked for pillows under my legs knowing that would have helped to begin with.  
• ASK FOR BLANKETS (being that hypo, even a little hypo) its VERY COLD... blankets WILL NOT affect the scan
• Ask for a break about half way through scans (to sit up and take pressure off your back) by the time i realized i could (tech number 4 finally asked me i was an hr into the scans) i was in so much back pain it was throbbing so bad!!  DONT WAIT ... 
• I DO NOT wish to talk ill of what happened- i was blessed that I had a ride over there, that they took me in as an add on for a rather lengthy scan that yes will take a TREMENDOUS amount of time in a VERY BUSY hospital FULL of nuke scans already in place.
• what worked against them and me was:
• I had 4 separate technicians administer the scan.  Of the four only one knew the protocol.  The protocol is easy to administer but with 4 different people it did take time for each one to figure out where the other left off... So the machine makes only a tiny beep at the end of 10 minutes and i do not expect them to RUSH right in after 10 min, however the scan took an extra 35-40 minutes overall (i was being scanned for a little over 2 hours when my hospital would have done it in one) because of wasted time due to missing the beeper, and also because they had to check and recheck the protocol cause 4 different people were doing the one scan.  easy to get distracted when u have so much else going on and i dont begrudge them that I have been there. 
• I wasnt set up properly to begin with.  In the rush I wasnt set up with blankets knowing i was very very hypo (that i did tell them before it started) and If someone explained the actual test then i could have asked for something under my legs to take the weight off my back and also for a proper break.  
• NEVER START A TEST BEFORE THE PATIENT TELLS YOU THEY ARE COMFORTABLE esp when u have to be still for 1 hr. 
• It would have been nice just to know how the scan works i had no idea when i could and couldnt move and at times i did feel forgotten.  Those are easy to fix but it took over an hr before someone told me how the machine worked

THE THERAPEUTIC RADIATION THERAPY

As this post is already pretty long i will not bore you with all the details but highlight good information to know and how lucky I truely am.

• The radiation pill is Iodine 131.  The dose is based on a calculation, as well as the whole body scan results.  The dose can be as small as 40mCi or on average between 70-100 mCi.  The Nuke medicine doctor will talk to you at length about precautions at home.  I was to be isolated for 2 days (sleep alone, eat with separate utensils, have sole use of a bathroom with shower and flush multiple times etc).  I was to stay low iodine diet for the first 24 hours (i wasnt to eat for 2 hours after the pill to maxmize absorption).  After 24 hours I can take my synthroid and cytomel
• A side note. ASK FOR CYTOMEL bridging... especially if you are unfortunate enough to be like me and very very hypothryoid... I FELT THE FOG LIFTED after the first dose
• cytomel is 4 times stronger than synthroid because it is T3 the active form of hormone... now i am not cured of hypo i will stake weeks to get back to normal... but it will take the fog and depression off your shoulders so you can begin to feel normal again... 

I was given 189 mCi of radioactive Iodine 131.  I was blessed.  My scan showed microscopic disease in the neck still.  THIS IS NORMAL.  The surgeon can ONLY remove what they see with the eye, and it is impossible to get rid of it all when my disease was so extensive.  So i was given very close to the maximum dose of 200mCi.  You take the pill then high tail it to the car and get home.  I personally napped cause by then i was so exhausted.  

DRINK LOTS OF WATER... not gallons thats not safe even for normal people... but i am so hypo that i can nap for 4 hrs at a time... DONT DO THAT... set an alarm and drink something every hour. And go to bed when its time.  DO NOT WAKE UP ON PURPOSE IN THE NIGHT... however if you do waken, even to roll over take a sip of water.  make sure overall you drink  at least 8 -10 glasses in a day.  The more u drink the more any residual iodine is excreted through the urine.  

I was lucky i felt only some vague tingling in my mouth, neck and lips.  Kinda like touching your tongue to a battery.  The more you drink the more you can ensure your salivary glands (and parotid gland) are intact.  Also helps wash off your taste buds.  I was LUCKY. I can still taste food just fine.  

Throughout the night i woke up several times with VERY VERY DRY mouth... but i had water right next to my bed and with a few sips that also improved.  I WAS LUCKY... 

I took my cytomel with synthroid today around 9am.  I felt like myself again.  I have NOT been foggy or sleepy today (although i took two short naps anyway)... I got up and down without dizziness.  And for the first time in weeks... i felt hope and grace.  Grace that i am done.  Grace that i zapped this cancer and my scan next thursday should confirm i am cured.  Grace that although i have suffered at times I am strong and my mind and body may have abandoned me at times I can endure... 

I also learned a lot about my body ... my health ... and food.  the wrong foods can cripple you.  They can put disease upon you that is misery itself.  it didnt help i was overweight to begin with.  It didnt help i am diabetic.  It didnt help i was so dependent on salt i forgot how food is supposed to taste to begin with.  I am young and to be so debilitated at times was so freightening.  To watch someone u love in pain because of ur illness because of your choices.... 

I loved tasting food again for the first time.  Getting creative with spices and yes even for me getting outside my normal comfort zone just to avoid the same meals in the same ways for day after day for over a month.  

This is long enough but i hope u can see how blessed you are... I know how blessed I am.  I have cancer.  I am a cancer survivor.  My cancer can be cured with two little pills.  That and a little surgery.  My pills can at worst ruin taste buds for a few days to a few weeks.  But i have my hair, and my ovaries.  I may not talk right but i talk.  I will also have kids one day (God willing).  I can work.  I can breathe.  How many can say that with cancer.  How many can be cured?  How many can take two pills, one dose, one overall treatment when its been there as long as mine (at least 6 + years) and still be cured.... 

I am blessed and I intend to use this to change my life.  It has changed my life.  It has opened my eyes to possibility.  And to how dangerous the food we eat can be.  The food did not give me cancer. But if i dont take care what toxins go inside my body... I am doomed to be trapped by the consequences when my body fails to handle the sugar, the salt, even the water or weight.  I was forced to be without comfort food.  To be without the luxury of emotional eating.  To make the choice to do what i needed to instead of what i wanted.  And i did.  And i m here.  I have been educated where salt hides.  Where sugar hides... truly seen how much SALT i eat in a day without ADDING a DROP to the food... 

I am born again.  Tomorrow is a new day.  Tomorrow I am off isolation.  Tomorrow is a day of change.  Do not wait til disease FORCES you to change, takes away your choices... 

Tomorrow i can start living a new life.... What will you do with tomorrow?

God Bless you all... and Be praised he saw me through this!