Wednesday, July 6, 2011

"Well, i won't back down, no, i won't back down. You can stand me up at the gates of Hell, but i won't back down. No, i'll stand my ground, won't be pushed around. and i'll keep this world from dragging me down, gonna stand my ground, and i won't back down. well i know what's right, i got just one life. in a world that keeps on pushing me around, but i'll stand my ground. AND I WON'T BACK DOWN! " Won't back down, by Tom Petty

one thing i have learned from having cancer, is that you have to stand up for yourself. i just will not be forced to do something that i am not comfortable with, or do not feel good about. i have been going around and around with  my new( soon to be ex) doctor from duke concerning the tracer dose that i have to take before i have my full body scan. the doctor uses I-123 liquid, and not the traditional I-131 capsules. i have had the I-131 treatment dose, as well as a tracer dose in the past  and did fine with this. when she mentioned that i would be taking the liquid I-123 i did some research. i found out  that it contains sulfite preservatives. i have anaphylactic shock reactions to sulfite preservatives. so i asked her to please change to the I-123 or I-131 capsule instead. sounds simple, right? even though i explained to her that i have been dealing with this allergy for the past seven years, and offered to give her the name of my allergist if she needed further confirmation, she would not change the order!!

this would sort of be like if someone had a peanut allergy- and we all know how bad those are- and someone offered to give them " just a little bit of peanuts". no one knows at what percentage sulfites will cause someone who is sensitive to have a reaction. manufacturers are not required to list these preservatives( there are six chemical names) unless they exceed ten parts per million. concentrations of less than this have triggered reactions in sensitive people.

o.k., i guess i could just take my epinephrine injection and my atarax tablets with me and take the liquid I-123  anyway, but i am not. anaphylactic reactions are just horrible! and when you have one, you never know if it will be your last, if you know what i mean.

i have thought this over ( and over again) and have decided to go to the semi-local hospital for the scan. it is where i got my "chemo" treatment dose of the I-131 and my scan the first time. i like the radiologist( remember the wizard from one of my previous blogs? he caught the mistake in my I-131 dose. he is on my good guy list forever now). i also like the small nature of the hospital, and the fact that i can drive myself to and from  the several visits that i have to make for injections, tracer dose of the I-131 CAPSULE, scan, and blood work. it takes all week. my good old endo from raleigh has been kind enough to agree to fax in the orders to this hospital for me. i had not stopped seeing her, thank goodness, and have an ultrasound already scheduled for september.the only part that i regret really, is the accuracy of the blood work. duke sends theirs off to the mayo clinic, and the results are, as i found out, much more accurate. i guess i will just deal with this the best way that i can. there is also a little" hoping for the best"  in there, as well.

this has been a hard decision for me, really. but i know it is the best one. i was o.k. with the 4 weeks on the LID diet, although i am not sad that it will now just be two weeks. and FYI, Noreen Gilletz, author of the Low Iodine Diet cookbook, says that there is absolutely no reason to be on the diet for more than 2 weeks. i was willing to compromise on this point, but not on the sulfite issue. i am looking out for myself, and will not agree to do something that i know is going to harm me. as tom succinctly puts it, "well, i know what's right, i got just one life". please do not let anyone try to push you around on a health care issue! as with any good doctor patient relationship, there has to be some compromise and two way discussion. i want a confident doctor, of course, but not one who is unwilling to listen to my concerns and adjust their treatment.

i am waiting on conformation of the scan date. hopefully, it will begin on august 1st. this is a short work week for me, and would not involve as much coverage while i am off to see the wizard, yet again. i have been a little depressed about all of this lately, i will admit. i am feeling better now- now that i feel like i have some control over   what is going to happen to me. that and the fact that i wore my new pink belly scarf to zumba tonight- it matched my pink tee-shirt, and i tried my best to shake the coins off. amazing what a little salsa can do for your spirits!


  1. I think you're absolutely doing the right thing. Taking the liquid I-123 could have disastrous results. I don't even understand why this doctor would risk it. She's not the one suffering with the results if you went forward with it. You are. I'm glad you found someone who would listen and give you the type of scan dose that you can have without worry of anaphylactic shock. Best of luck Bea.


  2. you are right,karen. not that i wish anything bad to happen to anyone, but if she had ever had an anaphylactic reaction, she would be more understanding i think. thanks, as always, for your comments!