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PART 3: Trying to relax, up in the capsule. "Send me up a drink," jokes Major Tom.  The count goes on.  4...3...2...1 (RAI 131)

Feb 17, 2010 - 5 comments
Tags:

RAI 131 radioactive iodine

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RAI131

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follucar variant papilary car

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Thyroid Cancer

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total thyroidectomy



~~~FEB. 10TH LAST PART~~~
It's now been two hours since I had my little taste of radioactive nom noms. And nothing. I have no gallbladder and the worlds most sensitive GI tract. I just finished five grueling days of my GI tract not holding anything ...lets say ...in...and I eat some drippings from a waste pan in Fermi and I'm fine?!

My body is so weird.

So yeah, nothing RAI 131 is nothing to me. No anti-nausea pills needed. My jaw is a little sore. Throat too. Overall no real complaints. Small headache.

I press the call button after 1.5 hours to try to schedule a lunch date for my 2 hour mark and nothing. No response.

Lucky for me my nurse Lee is very sweet, she leaves me a nice turkey sandwich and some fruit without me asking. She is nice, she's not repulsed by me, (using my best hunchback of Hunchback of Notre-Dame voice) I shall call her...Frieeeeeeeend.

After she leaves for the night I press the call button, nothing...zero response. I wait over 45 minutes before I begin rewiring the room. Unplugging, removing and ....yes...moving items to get a response. It doesn't take long.
*STATIC over the intercom* how can we help you? *STATIC*

My reply: Tell me when I can have my Lexy (my pet name for my generic Synthyroid, kind of like Sméagol 's pet name for the Ring. He called the Ring his "precious".)

*STATIC* Maybe tomorrow, we'll ask the doctor. Keep in mind you have to be off it for 2 weeks mam.  *STATIC*

My reply...I was on CYTOMEL, and I have been off it for 18 days....give me a time when I can start to get better.

  *STATIC* We'll let you know  *STATIC*

Silence

Jerks!!!

I become Sméagol in Lord of the Rings...I want my PRECIOUS! My Lexy. I want to stop my eyes from bulging, to tolerate the day light, to feel human again. I want my Precious!

That night I hold it together, I pace, I find creative ways to bathe, I watch Bones a lot. My husband and my mom call and talk me through it, they stick with me even when they can tell I'm loosing it. I cry just thinking of how hard things are for them. I have it easy. When they are not around, I talk to my Sméagol self, rambling on Precious and how good it will be when I have it again.

For now my routine is every 15 minutes suck and spit on sours (no swallow, spit only)
Drink 1 small cup of water
Pace myself, to min. 1 gallon of water a day to get my levels down fast
I want out
badly...my Precious awaits me....

Enter the new nurse...she tells me just pretend you are in the satellite circling earth...great now the song "Major Tom" is playing in my head 24/7 with the mad rants of Sméagol .

The next couple days are a blur, I drink a lot of water- 1 gallon from 1pm to 1am the first day and all night long.
On the 10th at about 1pm my MR rating was 30+ from a distance of < 15 feet.

~~~~~~~On the FEB. 11th ~~~~~~~~`
At 9:30am I was at 4.4 @ 6 feet.
At 6pm I was at 3.1 MR at about the same distance.

I was told no Precious for you...I cried...I longed for my precious...I longed for day light, fresh air and the ability to walk upright. I wanted Hypo hell to end. I wanted the meds I was promised. I am at 19 days no medication.

I cry that night, I have no defenses left. My TSH is so high, I cannot function. I miss my daughter so badly it hurts. I miss my granddaughter so much I cannot breath even while laying down. I miss my babies, my husband. I am feeling sad. I miss my bestest friends Chris and Kimmy. I miss my other besties Tom and Beth. I am grieving for the family times I am going to miss. See I just got here, the boys don't know me, they are getting into their teens, which means they don't want to get to know me. Soon it's Isiah's birthday, then Noah's. They are getting to the age of I don't want a family party. I missed out. We all did.

Soon a new baby is coming and I already love it enough to stay away. Far away. She's going to be 5.5 lbs I think. She's beautiful. I know it.

My sons birthday is on hold. He was such a tough guy, letting me have his room, skipping his party because we can't afford it and I am too sick. My little man is growing up.

I pray my son in law is keeping my girls so busy and full of love, that they have no clue nana's sick.

It hits me too, I mourn because my dad doesn't love me. I am again, without a father to lean on.

I sleep a lot. My poor husband and mother listen to my ramblings and tears. They have no clue how much I love them for walking me through Insane Lane and back.

Precious will wipe this away, heal me...if they would only let me have it. I must drink more water- min every 30 minutes. So swollen. Must keep drinking. Oh nice, prune juice. As it turns out...RAI causes me NOT to go to the potty ...EVER!!! Doc said get under 1.8 @ 3 feet and I can have my Precious and go home.

Must keep drinking. My Gi Tract went from making frothy lattes at home nothing but lead. (Sorry got mushy for a bit but yeah IM BACK :P )


~~~~~~~~~FEB. 12TH 2010~~~~~~~~ Ground Control to Major Tom~~~~~~~
On the 12th at 10am I am a 1 @ 3 feet this means I can go home, but still no Precious. WHY?!?!?!!?!? OMG I hate them!

They stall until my mother in law, my friend, my savior comes with my prescription from home and finally...I get my Precious! One dose in the right direction.  

Now 7 days later....I write all of this.

And I am Back!!!

My Precious! (snickers)

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by Justi_has_a_booboo, Feb 17, 2010
Other things I forgot to mention:
No less than 5 times in three days did I ring for a nurse and had zero response for over 45min - 2 hours. I became an expert at rewiring their call button so it went off at times every 5 minutes and I would be like whaaaaaat? I did not touch a thing, I am just laying here....why do you keep asking me how can you help me when I did not call you?!

Yeah

Oh and you get
1 bucket for food waste
1 bucket for recycle materials
1 bag for dirty linens

after 3 days it smells horrid

Everything else should be dumped in the toilet and flushed

When the toilet clogged I was told sorry, I don't know what to tell you. No one will come in there. This was on my last day, just before my release...still no one would come in the room. I had to sit with the smell of waste in cans for days and the toilet for that day.

Also a plastic tray made it to my room on day three...I was scolded...I thought it was OK...I was told by head nurse ratchet that now that tray has to be quarantined in a special room for 6 months before it can be used again.

In the words of Dr. X....it's safe...why not go home?

Annnd overall I would say...something needs to be done. This is not safe and it is not humane.

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by utahmomma, Feb 17, 2010
Oh, your journal brings back so many memories.  

You crack me up - I remember wanting my preeeeeeeccccious too!  :-)  Love that you rewired the room - too funny!

I'm just glad that I wasn't confined to the hospital and that I had my own room and toilet all to myself (and I got to shower - na, na, na, na!)

Thanks for making me smile!  :-)

HUGS

Utah

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by Justi_has_a_booboo, Feb 17, 2010
omg you just nanner nanner'd me!!! LOL!!! HUGS BRAT!!!

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by Justi_has_a_booboo, Feb 21, 2010
This will most likely be my final post in this series :P Here is a simple time line (a friend requested this)
Today is the 21st.  
I got my RAI pill on Feb 10th 100 dose

Feb 10th 30 MR (could be measured through a wall into in the room next door)
Feb 11th AM 4.4 mr @ about 6 feet
Feb 11th PM 3.1 mr (I think) @ about 6 feet
Feb 12th AM 1.0 mr @ about 3 feet

Paper says these are the rules:
Visitors --> Max 1 hour min distance 3 feet for next 2 days
No movies, public restaurants or transportation for next 2 days
Sleep alone 7 days
Laundry in a bag for 7 days then can wash it
eat separate 7 days
no preparing anyone's food drink etc for 7 days
flush toilet 2-3 times for 7 days
Stay away from pets, children, pregnant people for next 7 days- zero contact
separate shower if possible for 7 days

I was given a radiation card to carry with me it expires in May 2010. It shows what radiation and grades I have received and types. It is for me to give to law enforcement so I am not suspected of building bobs or something dire and that I can pass through security check points.

Feb 12th PM stayed in a hotel- coated the room with plastic, wore gloves and took my first showers since being "dosed"
Feb 13th PM home in my plastic room, bathroom coated in plastic and all precautions taken to min, expose my family.

The first 4-5 days I stay mainly in my room.

When I do come out I wear new socks and latex free gloves.

Feb 19th full body scan- results immediate- no cancer spread- no need for a 2nd dose of RAI I am free!!!! BOOYAH!!!
He said he see's some RAI in my salivary glands, a shine in my liver and a tiny glimmer where my thyroid used to be. All stuff they expected to see...all normal and all mean I am doing well and I am cancer free.

Over the last week I have taken down some of the plastic and replaced it with disposable mats that are fluid or leak proof. The key is making sure your fluids don't get on anything that cannot be washed with nice amounts of water. I work to protect my bed by sleeping on an air mattress. My floors by covering them with disposable mats and wearing new socks daily. I toss them out (bought at the dollar store :P)

Today is Feb 21st. For the first 7 days after being released on the 12th. I tossed everything. I bought pants for 1.99 a pair and wore them, tossed them daily. Same with $1socks, undies, disposable paper sheets with plastic on the bottom. Everything was tossed the first 7 days. I bought disposable hospital hand towels and tossed them.

Feb 19th - 21st I have a couple days worth of clothes and my blankets to wash. I will wash them 3 times, then run the washer 3 times empty to be sure not to contaminate my families clothing etc...
I just started using cups from the house again. I started riding in the car a lot again the last few days. Hypo is starting to leave me, although my eye sight is still too bad for me to drive, I am improving every few days. :)

And that's what it's all about...improving the journey...it's all in a days work for survivors like us :)

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by Justi_has_a_booboo, Mar 11, 2010
here are some links I found helpful:

Research doctors and their rating from real patients who have thyroid cancer or medical issues.

http://www.thyroid-info.com/topdrs/california.htm

vitals.com


RAI from a doctors perspective. Also a blog about a husband getting his wife through the thyroidectomy and the RAI process. (He bought a Geiger counter to measure he radioactivity.)

http://www.katmcguire.com/2009/06/rai-treatment-is-tough-but-painless.html

http://www.usatoday.com/news/health/2007-11-18-thyroid-basch_N.htm



Low Iodine diet is a pain in the rear! hated it!

Thyca.org

Low Iodine foods- My husband is Mexican American and we love Mexican food and BBQ food on the grill...here are some recipes we used to get through the almost 3 weeks of nothing with iodine in it.

Remember to always use Kosher Salt with the symbol on it showing it has been certified Kosher.

Mrs. Dash- careful some have "chili powder and we are not certain if this contains sulfurs even though it says no salt.

Flour Tortillas
http://www.recipezaar.com/Flour-Tortillas-Diaz-101601

A Bunch of Nice 2009 Recipes for the Low Iodine Diet
http://www.facebook.com/editnote.php?draft&note_id=277158699353&id=1195782453

French Bread- He only used the bread machine to mix the dough for 15 minutes, the rest was all by hand
http://allrecipes.com/Recipe/French-Bread-2/Detail.aspx

Ciabatta Bread
http://allrecipes.com/Recipe/Ciabatta-Bread/Detail.aspx

Chunky Salsa-I add a pinch of sugar and juice a lime + Fresh Cilantro
http://cookeatshare.com/recipes/salsa-3363?ref=p_title

Fajita Seasoning
No Chili powder since we cannot tell if it has iodine in it, it does list "salt"
Ingredients- play with it until you get it to a taste you like. Add a little water and a bit of the mix, then taste. Use as a dry rub on meat and save 1/2 for cooking the veggies in.

    * 1 tablespoon cornstarch
    * 1 teaspoon salt
    * 1 teaspoon paprika
    * 1 teaspoon sugar
    * 1/2 teaspoon onion powder
    * 1/4 teaspoon garlic powder
    * 1/4 teaspoon cayenne pepper
    * 1/4 teaspoon cumin

Use the Spaghetti Sauce recipe but omit the black pepper or reduce to 1/2 tsp. Their recipe is too much black pepper on thyca.org cook book recipe.

The "Company Cake" is pretty good! I put honey on it to make it seem like a super treat. (thyca.org recipe in cookbook)

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