For the first round of the iodine diet aka "The Ass Diet" I simply cut out a bunch of high sodium foods and started using kosher salt instead of regular salt. I really thought that these changes would be good enough and that my levels would be okay... Wrong! After urine test number two my levels were actually higher! The nurse said she wanted my to make sure I was on a strict low-iodine diet and to also keep a food journal so she and the nutritionist could review what I was eating. I was pretty bummed about this.
After this let down, I did a little more research about the low-iodine diet and it really isn't about sodium at all. I made the necessary changes and buckled down. It really was one of the most difficult things I've had to do. The diet is really strict. No dairy products AT ALL, no pre-packaged or processed foods (no cans or boxes!) no bread, no regular pasta! Well, there goes everything I eat! For the next four weeks this is what I ate...
Before I went to bed at night I would cook some egg whites with unsalted butter and diced green and red bell peppers. I couldn't eat store bought bread so I made my own. Normally I would make a loaf of regular white bread and also a loaf of cinnamon raisin bread for the week. I would take two slices of the regular white bread and toast them and put the egg white/pepper omelet thing on it. Every couple of days I would cook a bunch of chicken breasts on the George Foreman grill that had been marinating in no sodium ginger, teriyaki or lemon pepper marinade that I found at Publix. Those marinades were a God-send because before all I was using was no salt Greek seasoning. I would eat those for the next couple of days with sides of frozen vegetables with kosher salt, pepper and unsalted butter. I was allowed to have canned peaches or pears, sorbets or whole fruit frozen popsicles. Those were my after lunch or dinner treats. I can't tell you how much I missed chocolate!
There isn't much variety you can have on this diet. Every once in a while I would cook a hamburger patty with onion or I would make whole wheat pasta but the problem is that there isn't much you can put ON the pasta! I kept telling Robin that this diet was going to make me kill someone. Eating the same things over and over and over... ugh - not fun!
I did get inventive a couple of times and made my own French salad dressing using ketchup, vinegar, Splenda, onions and olive oil. It was actually quite tasty! It's amazing when you are at the grocery and realize that everything has sodium or iodine in it!! I even made my own peanut butter in the food processor!
I was determined to lower my iodine level so I was pretty strict on round two of the diet. My doctor suggested that I call my pharmacist and have them review my meds to see if any of them contained iodine. I did and the pharmacist said I was good to go. Two weeks into round two of the diet I was sitting at work getting ready to take my daily dose of pills and it dawned on me that the pharmacist didn't check my daily vitamin or the glucosamine and chondroitin supplements! I immediately went on Google and sure enough... both of them contained iodine. I was so mad! I started taking them at the suggestion of another doctor right around the time I started the Ass diet! No wonder my levels went up the second time I did the urine test!! All this time working so hard to be serious on the ass diet was for nothing! I emailed the nurse at my oncologists office and told her the news. She said to stop taking them and that I would have to be on the diet a bit longer.
Two weeks later I emailed the nurse again and told her that I needed to take the urine test again that weekend because #1 - this diet was making me insane and #2 - I just couldn't afford to buy all that special food anymore! I think she saw the urgency and the lunacy I was feeling and allowed me to do the urine test that weekend. I was so ready to end that damn diet.
I dropped off my urine at the lab that Monday morning and a couple of days later I received an email from her stating my levels were finally at an acceptable range! Yay!! She said she was busy scheduling my radiation appointments for the following week.
Soon after I received an email from the nurse with my schedule...
Monday: Thyrogen injection
Tuesday: Thyrogen injection
Wednesday: Appointment with Oncologist for questions, labs, thyroid uptake dose in Nuclear Medicine followed by a scan in Nuclear Medicine.
Thursday: I-131 dose
Thursday - Tuesday: Quarantine!
Wow. I was going to be a busy girl!!
I called the people at short term disability to inquire about re-opening my claim and was told that I can't re-open the same claim and that I would have to start a new one. Um, what? If I did that then I would have to be off work for 7 days before they pay any benefit to me. Well, I wasn't going to be off work for 7 days so how is that going to help me?? She explained that they can only hold a claim open for 30 days. I told her that the radiation was a part of the primary procedure and HAD TO BE DONE. She didn't care. I had to open a new claim, which I never did. It would have been useless to do so.
So, basically what all that means is that the time off work for doctors appointments and quarantine after the actual radiation dose was going to be unpaid. I was devastated. I went to HR the following morning to see if there were any loopholes and they said nope. You know, Robin and I have been struggling enough financially without this extra burden, but I had no choice. I had to take the time off without pay.
It will all work out... right? We'll see.
So, I go to all my appointments, get the injections in my butt (ouch!), get my scan, labs and chat with the doctor.
Thursday I went to get my dose of radiation... I was sitting with the doctor chatting and the radiology tech comes over with gloves on holding a little pill. She says "Don't take this personally, but as soon as you take this you need to leave!" I looked at the doctor and she said "You have about two hours before you become so radioactive that you can harm someone" Wow. I felt like I was going to have some special powers or something! I downed the pill and went home and reported to my area of quarantine - the master bedroom.
For the next day I stayed secluded in the bedroom. Robin brought me whatever I needed but I was so incredibly bored and lonely. I didn't have a television so I slept a lot and watched movies on the laptop. It was awful.
On Friday night Robin told me that I could come out of the room if I promised to stay on the couch and not touch anything... so that's where I stayed for the next day. The doctor said I could officially come out of the room on Saturday so we weren't breaking the rules too much. I couldn't officially be around people until Wednesday so I was off work from Thursday - Tuesday... all without pay :(
On Tuesday I had to take all the bed linens and wash them separately and then wipe down all the surfaces that I came into contact with. Before quarantine I took most of the stuff in the bedroom and put it in boxes so the wouldn't get contaminated. The less stuff in the room meant the the less stuff I had to clean! It was nice having a little break, but I was ready to get out of the house!! I really didn't have any side effects from the radiation, with the exception of a sore and tender throat, and one of the hardest things to deal with is that you feel perfectly fine but are trapped and can't go anywhere. I kept having to remind myself that I was toxic!
I went back to work on Wednesday and on Thursday I had a follow-up scan and another appointment with the oncologist. I did the scan first and when the doctor came in she said that she reviewed the results with the radiologist and could still see traces of radiation working on the area where my thyroid was (I always wonder how pills know where to go!) She said that the scan looked great and that I should be free and clear. I said "when you say free and clear, does that mean cancer free?" she said yes. Um, I'd like to get that in writing please. I suppose I should have been ecstatic, but it was kind of anti-climactic. She said I never had to see her again and to just follow up with my endocrinologist. Wow.
On the way home I drove up King Street and stopped at Cupcake to buy myself a "being cancer-free treat"! I also bought one for my friend Felicia at work (since we had just been talking about Cupcake) and also one for Robin.
I ate the one that looks like a boobie for Breast Cancer Awareness Month. Delicious!
I am so grateful that this whole ordeal is over and that I can move on with my life. What I had was just a small dose of what most of my family members have been through. I was fully a part of my Father's cancer ordeal and with the little bit that I went through I just can't image what thoughts, pain, complications that he (as well as other family members) dealt with, and are currently dealing with.
It seems as though for once, in a long, long time, I was lucky.
It seems as though for once, in a long, long time, I was lucky.