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PART 1: My adventures with RAI 131(20 days of hypo hell)

Feb 16, 2010 - 3 comments
Tags:

RAI 131 radioactive iodine

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Hypothyroidism

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papillary

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TSH symptoms

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Sarcasm- The Anti Drug

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Depression



BEGINNING: Feb. 16th ~~Today I am 7 days post RAI...I will go backwards and take you back to day 1 of my RAI 131 adventure.

Well today was the first day I felt like writing. My room made of plastic, tape and disposable items has been wearing on me.

I opened my eyes this morning, all snuggled in, enjoying the hiss of my air mattress, and the crunching of my disposable paper blankets, plastic covered pillow sticking to my ear, as I tried to raise my sumo body to a standing position…I am so damn swollen. Face, hands, feet, legs…I try not to let my family see me for the first hour I am awake, it’s so scary LOL!

Hypohell…oh yeah fun stuff! Today I did not care, for today…I had this feeling of glee, somewhat like a child at Christmas!

More like Jim Carey, as the fat, ugly, bloated, hairy, green, child Grinch LOL!!

Today, I was tearing down all the protective plastic in my room day!

I felt happy at first, and then somewhere, anger came along. I hadn't thought I was angry, but I guess it was in there. Being severely hypothyroid at inhuman, and inhumane levels can do that to a person. My glee turned to stupid tape, stupid plastic, stupid doctors, stupid me...I was an angry fat grinch tearing at my plastic and tape !!!

HAHA!!! What a sad bloated sight I must have been.....Luckily I had the door closed *wink*

I finally finished tearing it all down, and had two huge bags of my husband, and mother-in-laws hard work trapped inside of two massive garbage bags. They worked very hard to make a nice room safe room for me to live in. I felt a little bad for enjoying tearing their hard work down so much. The shower after was so nice. Aghhhh shower of three curtains, kind of like Get Smarts Cone of Silence, but with water.

LOL I love the classics! Sorry young people, you will have to google that  :)  

Now the floor has simple papers on them, disposable, but more campy than the clear plastic I just tore off the floor. Less clinical, more home, less medical looking, more relaxed, less fearful looking. You get me?  Or should I be more redundant?  :P

Hats off to you Utahmomma, for knowing how to play this silly game, and surviving it so many times. God bless you honey.

OK so here it is…my story and adventures with RAI all rights reserved, don’t make a movie, or a book, or a side note without consulting with me because Linda Carter is so playing me, and Johnny Depp is my husband!

I had my RAI 131 100 Mci dose 7 days ago. My experience was nothing like I thought it would be. I am a bit of a control freak. I thought I had planned for everything. I thought I had done my research. I thought I was clever, well prepared mentally, emotionally, and physically for this process. I had even planned on which of the super powers I would like to gain from my "glowing" toxic adventure of eating such radioactive isotopes from a nuclear reactor.

Well, the laughs on me, I was very wrong. I was not ready, and I did not get a super power in the way I thought I would. *SIGH*

OK so bear in mind I LOVE my surgeon, his staff, his entire hospital. LOVE THEM! So when they referred me to my nuclear med doctor, I didn't hesitate to make the 2 hour drive for all of my appointments, and my treatment.

I will not make that mistake again...


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TIP #1: JUST because the doc you love likes person, or Doctor X....it does not mean you will like them too.

Here are the Cliff notes:
• My nuclear doc said 10-14 days tops off my meds, to get my TSH above 30
• Feb 8th test TSH greater than 30
• Feb 9th go in to get RAI 131 pill

I was told by the nuclear medicine doctors the following misinformation:

• Stay 1 or 2 days, let us take care of you, monitor you and get you through it so you can go home assured your family is safe. It will be like a vacation, we will take care of you with the best view on the 11th floor!
• Most people have no clue they are hypothyroid, you will most likely will not even notice the first week, and the 2nd week be a little down, mild cramps in your muscles maybe some fatigue. Just nap,and rest, then when ready come to us, you can collapse, and we will take care of you from there.
* MOST people go right home, it's safe... but since you have to drive so far, and you have small children... we'll keep you here for a couple days with the best view on the 11th floor!
*Don't bring anything with you, no glasses, no computer, nothing you don't mind leaving behind. Just as a precaution we don't allow items in, or out of the rooms.
*after 24 hours you can go back on your medication
*once your levels are safe you can go home

Other things I was told, but still feel are incorrect:

*Just to be super cautious no kissing babies or pregnant people for 7 days after release
*Just follow the Thyca guidelines and you'll be fine
*after you go home just keep your clothing separate, food, utensils etc...
*2 days after you go home, go to the movies, fly on a long flight, etc...
*there is a small increased risk of leukemia and bladder cancer but usually that's after your 3rd or 4th dose...

Wait...what did he say...?!?!?!?!?!

I asked, and he said, "Oh yeah usually you need 3-4 of these until we have it where we can monitor you properly."

Try not to cry, try not to worry...Uhhhmmm...okkkkkkkkkkkkkkk..........I'll think on that. One day at a time right?



Riiighhhhhht… sounds easy, too easy.
I should have known better...

So nice, best room...great view....they'll take care of me, I can collapse...omg...this will be like a mini-vacation with room service AND I will get super powers!!

Now I hate taking any medication, so for me to have a Total thyroidectomy, and be on a lifetime of Lexy (generic Synthyroid) is a huge thing for me. I always find a natural way to settle things if I can, RAI scared me…really scared me.


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See Tip #2…don’t get distracted by the RAI…the HYPO portion …the TSH Overdose, gets missed. Pay attention to both!

Ask…no no… demand Thyrogen if you are like me…I am defined by stage 1 pap/foc variant cancer, 2cm or smaller,  no spread…don’t ask…DEMAND it! That is my opinion. Avoid hypo hell at all costs if possible.

They even have a shot to make you drool so you don't wreck your salivary glands! I did not know this.

/PISSED OFF!!

See currently there is a huge debate among our doctors, some feel patients like myself should never do RAI, others feel 30 MCI is enough…with THYROGEN shots, and no hypo hell for 10-14 days.

My doctor made me go 20 days no meds, TSH guessed at well over 180-200+
…after this Friday he will no longer be MY doctor

So I got a lot of requests for my mad ramblings, and crazy ability to be random, but still make sense to those who are attending RAI University.

AMEN Sister Utah sing it love! AMEN!

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Read on if you want to hear more…you’ve been warned LOL
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PART 1: My adventures with RAI 131: ENTER Admissions center hospital FEB. 10TH, 2010

IF you read above you see what I expected and what I was told. What I planned for in this whole eating a small nibble of a nuclear power plant dining experience.

By the time I got to the hospital, I was having a difficult time processing air. period. My hands, legs and face kept going numb if I spoke too long or walked too long. Walking and talking was a possible reason for hyperventilating and passing out. My eyes were dilated and having a hard slow time adjusting to the changes in sunlight. I came prepared to leave nothing behind in the hospital. I was told come, collapse we will take care of you and when its safe we will send you home to your babies and husband.

I get there, I am told go to the basement. I go to the basement, the doctor there precedes to tell me there is no record of my consult in the system and asks me stupid questions like Mrs. Justi what kind of cancer did you have, where was it and when was it? ARE YOU EFING KIDDING ME? i'm suckin for air like I am a gold fish out of water and you want to play lets ask 20 stupid questions that I know the answers are in the computer?? Am I panting all over him?! yes. yes I am.

HULK Angry!

I refused to answer his questions. In between gaspy, raspy puffs of suckin in air in a very defiant manner I refused. Of course I prolly looked like some stoned gold fish or perhaps a puffer fish? I dunno... I am just sure I didn't come off as sassy, and pissed as I had wanted to! Me sitting there eyes swollen to little slits, slumped to the side, saying obscene things in between deep breaths. Pretty. I know.

He eventually decided to try one more time to look me up in his "system" and found some information. He then asked with his back to me, "Why are you staying here? Why not go home like the others do? It's safe you know?"

Grrrrrrrrrrrrrrrrrrrrrrrrrrrr HULK ANNOYED

(yes I am using my freedom of expression to give the Hulk better adjectives, and adverbs for emotions, just not more pronouns)

I explained I have a 2 hour drive home, and the rules say not to drive more than 1 hour in the car with someone on the first day. I also have pets, and small children who like having a functioning thyroid. Annnnnd my husband is a 9 year survivor of Hodgkin's, and we prefer not to expose him to any radiation of any kind after what he has been through.

Suddenly, I was more interesting than his computer. He...this doctor with a very Russian name...we will call him....Dr. X! What an ******* he is, yes Dr. X will be his name.

Dr. X spins around to begin schooling me on the impact of a 100Mci dose. On how if I went home and my dog licked my hand the most she would absorb is 12MCI which might leave her fat...YES he said, "...FAT and needing to be on thyroid medication for the rest of her life."

Did I mention Dr. X was an *******?

HULK Want to SMACK!!

I explained to him... yes, that may be true of the immediate effects, BUT what might the impact be in say 20-30 years....oh wait...Labradors don't live 20-30 years, but husbands, and children do. They do not want to be exposed.

Dr. X said, "...there is little evidence to support that anything would happen to your children." He went on to say, "..your boys are 8 and 10 years old, which means they would most likely be 40 by the time there was a development."

Wow what a relief...they can know what kind of cancer they will get by 40! Jeepers he's an *******!

Dr. X should not debate with Hulky Puffer Fish!!

Dr. X wasting my air, and remaining brain power!

HULK want to ...GRRRR!  

I pulled my shirt collar down, exposing my rather large, but good looking scar from my total thyroidectomy (TT). I said, "My children don't need to be 39 like me, and have one of these... and be talking to someone like you in 20-30 years. I'm not leaving."

Dr. X then rolled his eyes and said, "Well you need to go into the hallway waiting room, admissions takes a long time and you will need to wait out there."

I said, "I was told come at 9am and we would be in a room, to collapse and that's it. I'm going to faint if you keep me in a chair, I cannot breath right, I cannot feel my hands or toes."

He explained, "...the admissions process is long and go into the hallway because I have paperwork to do."

WTF? what? He has other paperwork that needs to be done?!

Oh no he did not just tell me paperwork, other work was more important that addressing a patient concern!!

Screw HULK!!  LEMME AT HIM!!

Oh wait...I can barely walk, and breathing in a chore.
WHERE IS MY FISH BOWL?!!?! Where is my bed to collapse in?!

I simply told him give me the name of who I go to every 10 minutes...he interrupted me...explaining to go sit...it was a long process...

WTF!!

I cut him off and said, "...Give me a damn name, or it is you...YOU!!! I come to every 10 minutes."

He looked terrified. I was glad. Dr. X is such an *******! He quickly spat out Thelma, and Taylor's names, my next two contacts.  

I was told to be in the hospital on the 9th. Then I got a call, the room could not be ready until the 10th. grrr OK I stuck it out an extra day of hypo-hell...

OK so on the 10th, the room will be ready. Come on the 10th, check in at 9am... and we will take care of you.

Now I am told MY doctor is working at a different hospital today. Dr. X has paperwork to do, so I am being checked in by my surgeons surgical resident. I need to wait until he's out of surgery, before I can be admitted. And we are not sure when that will be. F@#$#@$%!!!

Breathe puffer fish!!!!

Wait...what...but this is nuclear medicine...and then why would a surgical resident...omg is that Jesus I see coming in those pretty lights?

So far it is 10 am and I have been suckin for air in the waiting room lobby in the freezing subzero basement. My very kind, patient husband has been keeping me warm, and trying to keep me from going full zombie Hulk. He tames me, and brings out my Inner Bruce Banner.

Finally, the ladies Thelma or Taylor, not sure who is who...come to get me BUT they are shocked I cannot walk the needed distance to make it to the 11th floor from the basement. They see me having trouble breathing and ask, "Oh my did you go to the ER?! Let's check her."

Grrrrrrrrrrrrrrrrrrrrr

Uhm no, I spoke to my Doctor who is MIA today. He told me on the phone oh good it's working, your TSH should be so good now there is no way to screw this up! Just come and collapse here...we will take care of you. Don't worry. Oh and if you cannot make it upstairs in our house for shower, just go European and skip it. Yeah NO...I showered.

That was 5 days ago. My TSH is at well over 125 because two days ago it was at 90+. HYPO-HELL

Bright lights, lack of air, and ringing in my ears. Wow. Hypo is not fun.

Poor fishes sucking for air when out of water.

I'm still waiting on that wheel chair...to get to the 11th floor...the room with a view and collapse...it's 11am. or close to it.

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OK well hit FF (fast forward) ...

OK ...PRESS STOP OR PLAY!

It is now almost 12pm. I am finally on the 11th floor, I have collapsed in a bed, but I am told it is not my bed. I am being looked over by the head nurse and her girls. There was two or three of them working me over, quickly. I feel rushed, as if I was going to miss a flight.

I picture her with a cherry blossom in her hair, showing me the instructions on how to fly her airlines. This should be good, first class all the way. I shall commence collapsing now, my room, my view :)

I am being told the following:

Head Nurse:
Once you are in your room, and have had your liquid dose of RAI

Me:
Wait...what liquid...I was told its a pill!! Oh nos...not liquid!?!

Head Nurse:
No one will check your vitals
No one will come in for you
Please do not move about if dizzy
No one will assist you if you fall

Me:
BUT REMEMBER ...IT'S SAFE ....Do i at least get a clapper?

Head Nurse:
Nothing goes in that doesn't stay in the room
Nothing comes out
No one is allowed in
You are not allowed out
You cannot open the door

Me:
Someone write this down...I think i'm feeling sick....

Head Nurse:
Do not remove the plastic off anything
Do flush the toilet 2-3 times after each use
There is now shower...

Me:
WHAaaaaaaaaaaaaaaaaaaaat!? No shower?! Waiittttt noooooo no no nono...SHOWER?!

Head Nurse:
Yes mam, the risk of contamination is too great, you must not shower...there is no shower in this room.

AGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGH!!!!!!!

I picked up my head from the pillow, stared her in the eyes and said" I will stick my dirty *** in your SINK!"

My husband said, "The head nurse was a pro, she never flinched."

She just simply thought it though and replied."...well the sinks are low enough for you to do that,"

She negotiated with me to use a squirt bottle, and unlimited towels.

I never got the squirt bottle.

I did wash my dirty radioactive booty in their sink.

What happened to collapse and we take care of you?
What happened to its so safe just go home, and hang out with your family?
What happened to my F-ing shower, my room with a view, my being care for, and looked after?
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NEXT UP: My room and my pill are ready...it's almost 1pm.

Comments
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by utahmomma, Feb 16, 2010
Oh sweetie, welcome to the post-grad program at RAI University.  Yeah, the RAI isn't the bad part - it's the hypoHELL!   People just don't understand how horrible it really is.  The stupid diet, the depression, the mind (and body) numbing fatigue, brain fog, wanting to scream from body aches . . . add on to that the realization that you are about to be subjected to inhuman levels of radiation because you have *cancer* and it's a bad combo.

I'm glad that your funny bone is healing well.  It took me about 4 weeks after going back on my meds until my TSH was low enough for me to feel human.  Sounds like you are well on your way.

HUGS to you my glow-in-the-dark friend!

Now we don't want you to come back to RAI U ever, ever again.  Okay?!?!  :-)

HUGS and love ya!

Utah

Avatar_n_tn
by hypohelltwice, Jan 04, 2011
What a nightmare.  I just finished a year of this crap.  My endo is an ***, nobody really understands.  My cancer recurred so I have done this twice now.  Lord help us!  

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by mylady0908, May 04, 2011
I really feel sorry for your.  I started going hypo since yesterday and my treatment will be on the 17th of May.  I wish I can have the  thyrogen injection but unfortunately it's not available until June. My doctor decided that we go ahead of the RAI treatment than waiting for it to come as the back order was way back in April. I'm so scared to hell about going hypo not to mention the day I will drink the 131 pill.  I just pray to God that all of us who are going through this stage in our life find comfort in Him and that we get healed and not to have any kind of disease in our lifetime and our loved ones be spared of any form of sickness. Did you suck on hard candy after you drunk the RAI? There are conflicting info on the web saying not to suck on lemon candy 24hours after drinking the pill as it will damage the salivary glands.  Any information about this will greatly help me.  Thank you for sharing your story. I'll keep you and all of those like us in my prayers.
Take care and God bless.


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