RAI and Isolation - where to stay & other Qs

[corduroy1975]

So I'm having RAI in May for multi-focal papillary cancer.  Apparently the pathology showed 5 tumours in total.  Some cells looked to be of an aggressive cancer type (can't remember the word) and some cells appeared to be Hurtle.  I don't understand what that means.  Oncologist is starting with a RAI dose of 50.  He said I'm required to be isolated from my house for 7 days as I have a 14 month old baby.  He indicated the hospital doesn't have any beds for RAI patients.  My parents are hesitant to have me stay with them while they are there as they only have one bathroom.  My husband is hesitant to have them move into our house (but would if push came to shove) as they are in-laws.  I'm a little surprised about the lack of bed space at the hospital.  Following the first treatment, I'll have a WBS 6 months after and if more treatment is needed, dose would be 100.  If additional doses are needed from there, they would be increased.  I'm not required to stop the synthroid as I'll be taking Thryogen.  But if more than one dose is needed, Dr. said I can't use the Thryogen again (not sure why).  I'm currently on a dose of 125 mg of Synthroid.  TSH levels were just at 4.85 so dose was increased from 100 mg.  I really don't get all this stuff.  I have fairly severe panic disorder and am frightened about the RAI and isolation (i.e. being away from baby and hubby).  I would love to stay in a hotel, but we can't afford a week.  Any thoughts and/or advice.

thanks  

[Liz94]

Can you have the baby go and stay with your parents and have your husband move into another bedroom at your house?  I pondered the whole hotel scenario when I had my RAI but at the end of the day it's just not practical. How would you get meals, etc.  I ended up staying at home in my room and had my husband move into the guest room. I had my own restroom and nobody was allowed in while I was isolated. I kept it very clean and at the end of it all I scoured everything in the room and bathroom. And I put plastic on everything I could manage like the remote controls and such.  I know it's a lot to ask of your parents to keep a baby for 7 days but your husband could help with that if he's able.  And when they say "isolation" I've found out that many doctors have different definitions of what that means.  I had 50mCi of RAI like you are going to have and my isolation was only 3 days. I was told I could also move about my house as long as I wasn't sweating or urinating on things!  I bought a box of gloves to wear whenever I left the room just to be safe. I hope everything works out for you. It'll be okay, you'll get through it and be feeling better in no time.

[AR-10]

Your best option may be to have your husband and baby move in with your folks for a week.

The hospital doesn't want you. They don't want a contaminted bed, and they don't want their staff cleaning a contaminated bathroom.

The suggestion of off-hospital housing may be worth persuing. Our hospital has apartments for student doctors and such. Maybe they could provide an apartment, and bill it to your insurance.

If you were VERY careful, you could stay with your parents as long as they have a guest bedroom and you wipe the toilet seat off with a wet wipe after you use it.

The radiation is supposed to be water soluble and just "washes off". So they say...

[AR-10]

Whatever you do, do NOT stay at a hotel.

[pep88]

Reading your post made me cry.  I just remembered the frightening feelings I had right before all of it.  The cancer, the surgery, the RAI.   My RAI was in Nov '07 for papillary cancer.  I stayed in the hospital because we have a 5 year old child, our insurance did cover it (even though we had to fight for it and the "coverage" was minimal at best at that point...)   I was so afraid of exposing our daughter even though we have a sufficient sized home to deal with all of that, if we'd felt we wanted to attempt it.  We heatedly debated a hotel room, but I was adament because of the radiation exposure to people who wouldn't even know they were being exposed.  

The stress of what you are going though is unimaginable, and yet I know it and feel it now as I write this.  I cried because I know of that strain on you, of what you're putting yourself and your family through.  It's so hard to ask of people, when all you want to do is be well/healthy/normal and not be in this (?) positition/condition/cancerous state.

Utahmomma has great advice.  And I have relyed on her many times for a bounty of information!  But she almost sounds like my husband.  If I say it's too cold, he turns on the heat full blast and puts thirty blankets over me.  That will make you warm.  If I say I'm sad, he tells me half a dozen ways how I can be happier.  I'm still sad (aIthough I'll laugh at him for being so nieve as to tell me how to be happy...)  

If you tell me your too cold, I'll tell you about how I can feel it too, and I can't believe that it's that cold and we should go and build a fire together and talk more about it over a glass of wine, maybe dinner....  That's what I wish I could do for you...  What can I say, I'm a woman and I'm post cancer, and I'm emotional...  But I wanted you to know that you're not the only one.  And that there is great "therapy" in this site.  I guess I am living proof.

Please keep us informed.  If you need anything, PLEASE let "us" know.  By now, you're guessing correctly, I'm not the "technical" one.  Just the go-to, pep talk, she may kinda understand me, been there girl.

[utahmomma]

Call your insurance company and explain the situation.  Stress that there are no options and that you have a toddler.  Encourage them to either contact the hospital and demand a room (which they won't 'cause it's so expensive) or help offset your *medically necessary* temporary housing (which they might).  Hey, worth a shot.

If that fails, call and talk to the patient advocate at the hospital and explain the same situation.  See if they have any off-site housing (some here do for long-term family members) or if there is a hotel they could provide or at least assist you with.