Update from Jan

I figured it's time for another update now that I am beginning to feel like I'm among the living again. I am past the radiation which was a not-so-good experience but I like to say that I hope I'm still radiant:).

On Friday, May 9, I went down to McKay Dee Hospital with my parents and had to go to the Nuclear lab. It is an interesting place. When you enter the nuclear lab it is dark and cold. You walk down a hallway and into an area where the reception desk has all the lights off except those coming from their computers and the rooms with big machines are all dimly lit. It is also quite cold in there. I don't know why this is. It took about an hour because I had to give blood and then they took us to meet with the chief radiologist who went over what the purpose of the radiation is, how it works, and what precautions I would need to take. Actually taking the radiation only took about two minutes. I went back to the 'Hot Lab' (that's what the door said next to a nuclear sign). The guy (Bill) had a silver box with a lot of packaging around a white jar with my name on it. He opened the jar with a metal barrier between him and it. And then opened another two lids before he actually got to the small vial of radiation. He told me that it is packaged so carefully because the University of Utah delivers it there for each specific patient and if they got in an accident they wouldn't want it to be spilled. He squirted some water into the vial and put a straw in it. I could only touch the straw and I drank everything out which really only amounted to a sip. Then he put more water in two more times and I sipped it out. So it really only totaled three sips and it just tasted like the water. Then we just immediately left. I sat in the back of our van. I couldn't eat or drink for 4hours.

They explained that for the first 24 hours being around other people would be like me giving them an x-ray. After the first 24 hours are over, 80-90% of the radiation would be out of me and keep diminishing. After 3-4 days it would not affect other people at all. During those 3-4 days I could be around people for short amounts of time if I stayed about 6 feet away, but I could not be around children at all. After 8 days it is no longer in my system at all. I holed up in my parents bedroom and they would just bring things to the door for the first day. On Sunday I came out for a few minutes and just sat away from them while we gave my mom a Mother's Day gift.

The worst part about the isolation is I got really sick and I was totally miserable. I was nauseous and threw up most of what I ate through Sunday. (I now have a very strong aversion to some certain foods that I will not be even thinking about for awhile.) I was supposed to be drinking a lot to help move the radiation out of my system but I probably kept down only a few swallows of water. On Saturday I was cold and sleeping with socks and slippers on my feet, gloves on my hands, and a whole pile of blankets. By Monday, I seriously had the thought that I wondered if this is what your body feels like if it's shutting down to die. I think the sickness was more from having such a high TSH level and not being on the medicine to make up for not having my thyroid than from the radiation but I don't know for sure. The reason the doctor had said he wanted me to have the radiation so fast and scheduled for Friday is because he said by Monday I wouldn't be able to function, which was true apparently.

I was finally able to start my medicine (Synthroid) on Sunday. I tried to keep it down as long as I could but threw up 30 minutes after taking it. I have now been on the medicine for a little over a week and I think it's beginning to make a difference. I don't feel like I'm dying or have a constant headache and I'm sleeping a little better at night. That's been frustrating that I have been so tired but I haven't been able to sleep well. The doctor said that's just part of the whole deal.

I am experiencing another frustrating and annoying side effect of the radiation which is that everything I eat has absolutely no taste. I read that the radiation can affect your taste buds and change the acidity of your saliva. I talked to the doctor's assistant today and she assured me it shouldn't be permanent but that I just have to give it time to return. It's annoying because I have finally felt like eating again this week and yet nothing tastes like it should. I am also experiencing more pain in my neck again (which had begun to get better from the surgery) but they had told me that the radiation would probably cause that because that is where it should be absorbed and it could cause irritation and swelling.

I had to go back down this past Friday and have a post-op appointment with the surgeon. He thought things looked good from the surgery. I am really impressed with how well my scar looks. I think he did a good job. We have been told a couple of times that one reason my TSH level soared so high is because I had a very clean surgery which means that they were able to get out what they needed to. He said I needed to give the medicine longer to build up and then I would notice a difference and start to feel better. He said my neck was still tender and swollen and I might develop lumps around the scar area but they would come and go.

After the appointment with him we had to wait a couple of hours for my appointment for a full body scan that they do a week after the radiation. I hadn't been able to eat or drink since midnight for the scan and before that I had to drink a bottle labeled, 'The Sparkling Laxative' the night before so I was tired and a bit sick so I was glad to find a couch in the hospital that I curled up on and rested and read until then.

The body scan was back in the nuclear lab. I had to lay on a long narrow table while a big x-ray type machine sat about 4 inches above my face and neck area for about ten minutes, then two inches away for another ten minutes. I'm glad I'm not super claustrophobic. I just have to close my eyes and pretend it's not there. Then it moved slowly down my body for about 30 minutes. It took about an hour but I did get a blanket on me (thought it was still cold) and my arms were dead from laying so still for so long. I got the call yesterday that the scan looked good. It showed them that the radiation had stayed in the neck area and had no distant spread. Which I guess means that it didn't show that the thryoid cancer stuff had spread to any other areas of my body so that was good news.

One other thing I forgot to mention before is that I found out at my appointment with the endocrinologist when he went over everything that I have a gene called something like Hashimoto gene that is genetic and predisposes me to endocrine disorders, which thyroid cancer is one of them. He said my family would need to be aware and based on her medical history it most likely came from my mother. So my siblings all have a 50/50 chance of having it and my children will each have a 50/50 chance of having it. I guess it just means you have a more likely chance of having endocrine diseases and problems like Type 1 diabetes, B12 deficiency, and about 20 other things the doctor said we could look up.

Well, the plan for now is that I just keep taking the synthroid medicine and let it build up in my system and I should slowly start to feel more like myself and gain back my energy. The first week of July I will go for my next blood tests to see what my levels are at and then I will go back to the endocrinologist on July 3 to check in with how things look. I am looking forward to getting my life back on track and doing more normal things. I was out walking about three-four miles at least four or five times a week and now I feel like I can barely walk in the hospital without being exhausted so I am looking forward to building that stamina back up. I am ready to be able to join the real world again. You always think it would be so nice to just stay home and do nothing but it does wear on you after awhile and you miss being around people. Thanks again to everyone who helped out with that by e-mailing, texting, calling, sending cards, and visiting. It has meant the world to me and made me not feel so cut off from everyone.

Thanks for all the love and concern,

Janalee