Today's post is for everyone like me. Those facing the unknown, looking for someone to tell them what to expect. The doctors can tell you, but you want to hear from someone who's gone through it. How was it, really?
Well, it wasn't all that bad, really. I'll try to walk you through from beginning of my low-iodine diet to back home after in-hospital isolation time.
The diet, for anyone who doesn't know, is formulated to starve your body of iodine. This means no salt, unless it's iodine free. No dairy, no seafood, no prepared or canned foods (no way to know what type of salt they use). No going out to eat, no eggs (which means no noodles), no soy, very little meat and worst of all (for me) no creole seasoning! I baked my own bread to make sure it was iodine free. Other than that, I mainly ate stir-fry. There are actually a LOT of things you can have, if you know how to cook them. And I highly recommend that you go to Thyca.org and download the free pdf low-iodine cookbook they have there. I did stir-fry because it was easy for me and I liked it. I seasoned with Mrs. Dash (I had about 4 flavors I would rotate around), and it was just fine. I started my diet on October 13th. This was also the day I stopped taking my thyroid medicine. At first, I didn't notice much change in my body or behavior. As time went on, though, I began getting tired easier. Not weak, really, just worn out. My patience with the kids dropped. I was more easily irritated. Not as cheerful when Brad came home. My habit is to stay up a little while after everyone has gone to bed...it's the only time of the day when I run no risk of anyone wanting anything from me. But after 3 weeks of following this routine, I was the first in bed. I didn't even care how late the kids stayed up. If they stayed up late, that meant they would sleep in late, and that was fine with me! I wasn't miserable, by any means. My body was a little achy. I didn't cheat. We needed a TSH number of at least 30 for the treatment to be effective, and I was terrified that I would overlook something that I wasn't supposed to have and not hit my number. Even though there were plenty of times when I watched others eat...often eating food that I had prepared...and known that it must have tasted so much better than what I had...still there was no REAL temptation. All I had to do was think of my doctor shaking his head sadly and saying, "I'm sorry, Mrs. Swander, but your numbers aren't quite what we need. We'll have to delay your treatment. Let's try another week on the diet and then we'll do another blood draw." This scene instantly banished any hunger for whatever food was nearby.
On November 1st, I had my blood drawn. I was so nervous about my numbers that my mom went with me. It was an anti-climactic event, since the results didn't come until Friday. Someone riding there and back with me really helped me not stress out about it, though. It was also great to have time with just my mom...we don't get that often, and it was nice. It funny how special times like that can be, even when nothing particularly important gets discussed. The next afternoon the call came. Remember, we're looking for a number of 30 or higher. The nurse cheerfully announced that my numbers were great, the doctor was thrilled and we were on for treatment on Monday. I asked what my THS level actually was. It was 62! I was so excited. So happy that I hadn't taken "just one bite" somewhere along the way. That one bite probably wouldn't have kept me from treatment, but it's a slippery slope, and cancer is nothing to mess around with, just for a few seconds of enjoyment. She said, "You didn't cheat." "No, I didn't!" I proudly replied. She immediately asked how I was feeling. I said, "Well, I just woke up from a nap." She wasn't surprised. But again, other than the sudden drops in energy, I was doing great. The high of knowing I had done well over the past 3 weeks carried me through the weekend. My husband was so proud of me. It was so worth it all!
Monday morning we headed back. I had a full escort. My mom, my dad, my sister, my brother, my sister-in-law and their youngest boy all rode up to see me to the hospital. We had to stop at my doctor's office to sign a consent form that had expired since I signed it back in July. Then around the corner to the hospital where there was a bit of waiting and a lot of registration forms to sign before being wheeled like an invalid up to what must have been the furthest corner of the hospital.
My whole room was insulated against radiation. It became more personal as I looked around; it was insulated against me. The floor was covered with some sort of thin padding (which I was thankful for, because it was much warmer for bare feet than the cold laminated tiles in most rooms). The wheeled try beside my bed was wrapped in plastic, as were the TVs and the toilet. Here you can see a bit of the floor, plus how well they covered this oh-so-essential part of my room.
I had to empty my suitcase into the closet and take the laptop and nook out of their cases. All these cloth/leather coverings would easily absorb radiation, so they couldn't stay with me. I changed into an outfit I got at goodwill and packed my regular clothes and all the other things I couldn't keep with me (including my purse) back into the suitcase. My family couldn't stay too much longer, but before they left, we were able to pray together.
After everyone left, I had nothing to do but wait for them to come in with the RAI pills. I flipped through channels and set up the gadgets I'd brought to keep me entertained. Found the best plug in spots for the laptop and nook, checked out where my mom had put my stash of hard candy (needed to keep the saliva glands working so the iodine didn't gather and make my neck swell up) and made sure I knew where all the notes people had sent with me were. I'll post more on those later...they were very possibly the best part of it all. The nurse gave me 2 little tablets that I had to let dissolve under my tongue to prevent the nausea that RAI sometimes causes.
After a little while, my doctor and the radiologist came in. They had a small, silver insulated canister with them. They went over my instructions one more time: Drink lots of water, wear gloves when handling things like the laptop or my phone, suck on candy (especially tart candy, like lemon drops...I also had lemon wedges in the room, which I squeezed into my water. This seemed to work very well, as I was killing two birds with one stone), take extra showers. After we had discussed everything we could think might be a question or concern, the canister came open. Tongs pulled out 2 innocent-looking pills, each a bit larger than a tylenol. They put them in my gloved hand and I popped them both in my mouth. Down they went, along with a 12 oz bottle of water. The men smiled and left.
The silence was the worst. All of you moms know that even though we often crave a bit of quiet, absolute silence usually means bad news. :-D With 4 or more kids always around my house, my "some thing's not right" radar goes nuts when there's no noise at all. The TV came back on, but it was just because I needed something in the background. It stayed on almost the whole time I was there. I had left my contacts at home, knowing I would have to throw them away if I took them, so everything I watched was a bit blurry.
Then I remembered the care package that Virginia had packed for me. I had fun pulling out the crazy things she had stuffed into a colorful bag, and reading her reasons for each item. Thank you, Lord, for a friend who gave me a reason to laugh when the emptiness of my room made me want to cry. Then I read the first of the daily encouragement cards she had added. Then came the notes from people on facebook and a couple text messages and phone calls. By that time, an hour had passed and the radiologist was back with his little box to measure my radiation output. He told me that I was emitting 50 times the amount of radiation deemed safe for the public. I am so glad I had that hour of pick-me-up before he came in. Instead of making me fearful over any possible side effects, I was encouraged that the treatment was, indeed, moving through my entire body and would attack any remaining cancer. He took 3 measurements at 3 different distances from me, reminded me to drink lots of water, and left.
The nurses would call before bringing in a meal tray to see if there was anything else I needed so that they could come in as few times as possible in a shift. They were very nice, and took care of everything I needed, but they didn't stay longer than they had to. They would wear a plastic covering that they would throw away before they stepped out of my room. There were 3 trash cans, which housekeeping did not empty as they would in a normal room. All of my meals were served with disposable everything...they even came in on a styrofoam tray. After I was done eating, everything went into the trash.I had bottled water and cokes in my room before I was given the pills, and the nurse would bring a large cup of ice with each meal. As I finished each 12 oz bottle of water, I would mark it on the nurse's marker board, since they were supposed to keep track of my fluids. I also had to mark each time I used the well-protected toilet. I took 2 showers each day. One just after dinner and one mid-morning. My doctor said this is something he recently started recommending for RAI treatments, as it makes a significant difference in flushing the radiation from the body. They told me my goal should be about 4 hours of fluids per hour. I wanted to make sure I got home on Thursday, so I was bound and determined to do at least that much. My average ended up being 6.5 oz/hour, including the hours I was asleep. I'm not bragging about how much I was able to drink, I just want anyone who might be about to go through this to know that it really does make a difference. Fluids are the only thing that will make this process go more quickly.
By the time I was measured on Tuesday, quite a bit of the radiation had been flushed from me already. They started talking about me going home on Wednesday, which I had not dared to hope for. I was so encouraged that it was easy to keep drinking! Also, the RAI seemed to have made my mouth a bit dry, so I was happy to have all of that water. Tuesday night was the election, and I went to sleep disappointed and with a headache. Wednesday, everything caught up to me. The lack of sleep from nervous energy Sunday night, the emotional drain from a video chat and phone calls with my kids (my precious 3 year old brought me to tears both when he was so excited to hear from me and when he was brokenhearted that I had to say goodbye), frustration over the presidential election results, all of this on top of the reduced energy from my diet (which I was still on) and lack of thyroid medication. I had a headache. I slept almost all morning and had little appetite. I managed to keep up on the fluids, though. I didn't want to add one more reason to be unhappy. Finally it was time for another reading and I passed with flying colors! Suddenly everything was bearable...I was going home! With my wonderful husband on his way to pick me up, I started packing. I tossed out any paper that I had touched with my bare hands, I threw away the rest of the candy and the toothbrush and toothpaste I had been using. I flipped through the channels until I found something lighthearted that matched my mood, and watched bits of it as I paced the floor waiting for my ride.
When Brad got there, he brought the suitcase that my parents had left with, with everything still inside. He was not allowed in the room, but the nurse brought it to me. I quickly pulled out the clothes I had worn to the hospital and changed. I tossed out my goodwill clothes and packed the laptop and other electronics into the suitcase. Brushed out my hair, put on a smile and went to meet the one person I had missed most of all. This awesome man was ready with a big hug and a celebration plan. We went to Longhorn steakhouse for a dinner like I hadn't had in ages. I had a loaded baked potato, a salad smothered in ranch dressing, strawberry lemon aid and more steak than I could find room for. What was left (about half of both steak and potato) came home with me for lunch the next day. I will say, after a month of bland food, I did pay for that meal a bit the next day. But, oh, it was worth it! Sitting with my husband, knowing the treatment was done, feeling for the first time that the end of this ordeal really was in sight. It was as much reason to celebrate as the birth of our children.
Arriving home was incredible. Hugs (several times around) and "Mama, we missed you!" and I love yous and promises of back rubs and foot rubs and help cooking and all the things my beautiful children know are special to me. Until you are gone, you never know how important coming home is.
I started back on my thyroid medicine the next morning. All the excitement had worn me out, and I was so thankful that Tosha stayed around to help even after I was home. I got up with Brad as usual, but ended up going back to bed before the morning was over and slept for almost 4 hours. It will take a little bit of time for my energy levels to go all the way back up, but I feel better each day. Today is Saturday, (3 doses of meds now) and I'm doing well. That little pill will be part of my daily routine for the rest of my life. Amazing how something so small makes such a difference. Again, I praise the Lord, that He has allowed men the knowledge that gives me this supplement.
So that was my radiation experience. I will go in for a full-body scan in a couple weeks, and we'll find out how it worked. I was blessed to not have any sickness during treatment, and more blessed to be surrounded by love, prayers and support through the entire ordeal. If anyone has questions, please ask! I will answer honestly and as accurately as I can. The unknown can be scary. I hope my post today is able to reassure someone who is walking this path behind me.