Monday, January 12, 2009

My "glow in the dark" process (RAI Therapy)

Many of you have gotten on to me for not telling you about my appointment last Friday. I will be blogging every now and then as an elaboration of emails or just blogging because I feel like I need to. I'm going to need some sort of outlet during my RAI therapy process. Now, on to my appointment details...

Any time you see anything about radiation or radioactivity in a hospital, it's red, so I decided to be festive and post in red. How appropriate!

Let's back up a little bit in case you're just hopping on the train. Last Fall, I went to the doctor because I found a knot in my neck. OK, I had poison ivy which got me in there. If you know me, you know that I NEVER go to the doctor. I MAY go once a year for bronchitis or a sinus infection or something. Well, that changed last Fall. I have had fourteen (I'm pretty sure) appointments since September. I'll elaborate more one day, but for now, I'll jump to the part where I found out it was my thyroid and I needed surgery. I had surgery and had the right side of my thyroid removed. When I woke up, the doctor told me that it was a little bigger than they thought. It was the size of a baseball! No wonder I could feel it! I had been told that they would biopsy it right then and there and that if it showed any signs of cancer, they'd take out the left side in the same surgery. The doctor said by its consistency that it looked benign. I went back the next week for my post. op appointment to find out that it was not benign. I had Follicular Thyroid Carcinoma. The doctor told me, "Surgery went well. It went so well that we're going to do it again." Huh? I SO was not expecting that! So, the next Monday I had the left side of my thyroid surgically removed. Surgery 1 to surgery 2 was 10 days apart. So, on to my appointment last Friday, January 9.

I walked in and there was NO one in the office. YAY! The appointment before was a tiny room and there were twenty-three people in there! Some people were standing it was so crowded. Ick! So, I do my paperwork and they sent me back. It was a blessing. The nurse said she was going to check my vitals. I told her as she put the blood pressure cuff on my arm, "It's probably going to be a little high". She said, "Oh. Do you have high blood pressure?" I said, "No, but I'm really stressed and I'm exhausted right now." She said, "Oh. What's going on?" I said, "Well, my dad's in ICU." Tears started streaming down my face. She asked question after question about Dad. She was so inquisitive. She cared. I was a person and not a patient at that moment. I didn't boo-hoo uncontrollably or anything, but of course I apologized for getting emotional. She brought me the box of tissues and I dried my tears. She was incredibly nice to me. She then proceeded to ask one million, four hundred and seventy-five thousand medical history questions, most of which were "no". She said, "Great! You're going to be easy! You're young and so healthy!" I know, I know. Despite my obesity, I'm one healthy chick! (Thank you, Jesus!!!) She did congratulate me. I've lost about 40 pounds in a little over a year. She said, "Wow! It's terribly difficult to lose ANY weight when your thyroid is out of whack, so that's... that's excellent! You must have been working hard!" It's nice to know why I've worked my butt of at times and not seen as much weight loss as I thought I should! She then told me about my Radioactive Iodine (RAI) therapy.

I will be off of my medication two weeks prior to the procedure. She said I would feel terrible. I'd be irritable and sluggish for those two weeks. I'll be on a low iodine diet (which is not necessarily low sodium, confusing) for those two weeks and during my hospitalization. I stressed to her that I wanted to miss as little school as possible and asked if I could postpone it to the summer. She said medically, yes, I could.

The doctor came in and was incredible. I really like him! He was VERY thorough in anything he said. It was like sitting through RAI therapy 101! He first said, "You know, people hear the word 'cancer' and they think, 'Oh my gosh! Cancer! Red flag!' but that's not really the case with thyroid cancer." I told him I never felt like I was a "cancer patient". Them referring to me as a "cancer patient" is very uncomfortable. He said, "If I had to choose for my sister to have some kind of disease, it would probably be thyroid cancer, even as opposed to diabetes or high blood pressure because it's so treatable." Yay! Is it wrong to say, "Yay for thyroid cancer!"???!!! I mean, it could be SO MUCH WORSE!!! It isn't necessarily curable, but very treatable. He then said that the good thing about getting this done with is that after the RAI therapy, I'm done with it! I'll have to regulate my meds, but I'll be done. He said that there's a 98 to 99% chance that I will NEVER have to deal with it again. WOOHOO!!! Praise God!

The thyroid produces hormones. I will be on a thyroid supplement for the rest of my life (I knew this prior to surgery). I saw a good example while I was flipping channels the other day that the thyroid is like our thermostat. It'd be nice to be able to tell it what to do like we can in our homes, but it's impossible to do so with a non-functional thyroid, or now in my case, no thyroid. The thyroid is pretty much the only thing in our bodies that absorb iodine.

The doctor said that having this procedure done is just the process of thyroid surgery when the thyroid has been labeled "cancerous". He said that it's not because the doctor didn't go a good job, but that it's really hard to get all of the thyroid because it's attached to other things unlike other organs that just kinda hang around. (That's my terminology, not his). :) Back to the absorption... during the two weeks that I'm off of my medication and on a low iodine diet any thyroid cells that I have left will be craving iodine like mad. I will take a pill (you can do that, have it injected, or drink it. This doc does the pill), then the RAI will go through my entire body. Any thyroid cells left will absorb it thinking it's iodine, but alas! It's radioactive iodine!!! Gotcha! It will zap any cells that are left.

The nurse had asked when I wanted to have it done. She said she understood that I'd probably want to postpone it with Dad being in the shape he was in and not knowing what was going to happen with him. She mentioned maybe Spring Break. That's when I mentioned the summer. When the doctor came in, he introduced himself and said, "Why don't we do this thing Spring Break? You really want to get this over with and get it behind you. I understand you're having some family issues and want to push it further, but you REALLY want to get this behind you." I said ok. He told me several times how poorly I'll feel while I'm off of my meds. I'll feel worse that I've probably felt at any given time in my whole entire life. I guess I'm glad he told me over and over so that I know to expect it. He said I'll feel tired and ache. I'll feel nasty and maybe sickly. Bummer!

So, I go on Monday, April 20th, the first day of Spring Break for the RAI therapy. I was told in December when I went to the appointment that I didn't have to go to (another story for another time) that I'd be hospitalized (in isolation) for 48-72 hours. I was freaking out about that a little bit because I'm very claustrophobic!!! So, the doc tells me, "You'll be hospitalized for 4 or 5 days, maybe more." I said, "Excuse me just a minute while I go get a Q-tip and thoroughly clean my ears." OK, either that or I sat and nodded in disbelief. He said I MIGHT get to go home after day 3, but he generally likes to keep his patients for 4 days. It totally depends on the patient. He said the therapy is really easy, it's just annoying because I'll feel so badly.

I'll go in the room (which will be saran-wrapped), put on a gown, then swallow the pill. I will have a saran-wrapped phone and will have a TV in the room. Anything I take in there besides my clothes will stay in there because it, too, will become radioactive. People jokingly asked, "When do you get to glow in the dark?" or "When do you get to shoot sparks." HAHA, people! FUNNY! :) It really is and I'm terribly glad this is something I can joke around about!!!!!!!!! Anything that I touch will become radioactive, hence the walls being saran-wrapped as well. He said, "One good thing is that you know you'll have your own room!" Ha. Again, very funny. ;) He said he wants to get the RAI out of me as soon as it can be let out. He said, "So, we're gonna have you drink a lot so you'll pee a lot." OK. Can you tell this doc was young? I've never heard a doctor refer to it as "pee". It's either "urinate" or "go" or "relieve yourself". Ha! So, I'll pee a lot. He said, "That's easy." He said, "We're going to make you take two showers a day because of any RAI that may be on your body that you've sweat... that's easy... we also want to get your saliva glands working and get that RAI out of your mouth, so we're gonna have you eat lots of sour candy.... that's easy. So every 15 - 20 minute, you'll pop a Lemon Head or something... that's easy." So, the therapy part is going to be simple. He said, "After your therapy, that'll be it. You'll have a check-up ever so often to regulate your thyroid medicine, but that'll be it. You'll be finished." YAY! He then said, "Now, I'm not saying that you'll be happy-go-lucky the day you walk out of here. You're still going to feel very poorly for the next couple of weeks, so we're looking at a little over a month of you just feeling rotten... feeling worse than you've ever felt before." Dang.

But you know what? I'll take knowing that I'm going to feel terrible for a few weeks over having to go through rounds of radiation or chemo-therapy ANYYYY day!!! I am blessed!!! As much as I hate my hair, I get to keep it! Feel rotten for a few weeks knowing we've beat this mess, or feel rotten for who knows how long wondering when my next chemo-therapy treatment will be and IF it will work. I think I'll agree to the route God picked for me. There are so many alternatives that are so much more negative than "take a pill, drink lots so you'll pee, take two showers, and eat sour candy". I'll take it!

I addressed the claustrophobic issue. He said I probably would get cabin feverish and stir-crazy and that if I do, let the nurses know and they'll give me a tranquilizer. HA! You better believe I will though! If I'm at home for a DAY and don't go anywhere, I HAVE to get out of the house the next day or I'll just die. There have been several situations that I have had panic attacks due to claustrophobia. Thinking about being in a ROOM for 2 days makes me freak out and makes me feel a little panicky right now, much less 4 days!!! The doctor said that he has kept some patients several more than 5 days. No way, Jose! You'll just have to move out of my way or become radioactive yourself! Wait. I CERTAINLY don't want one of those funny white coats. I'll comply.

I worry that while I'm off of my medication that I'm going to do something or say something I regret. I'm really worried about that. I have not felt like my happy self since my first surgery which was October 24th (Happy Birthday, Melody!) and long for the day that my medication is regulated. I'm on a different medication than I will be on after my RAI therapy to prepare me for the therapy. I'm sure that has something to do with the way I've been feeling. Physically I feel great now. It's mentally that I'm not myself. I'm trying really hard. I was given some really good advice today and that's to not worry about that day and the days in April/May when I'm off of my medication and feeling terrible, but to live one day at a time. I CAN'T keep worrying about how I'll feel and what I'll do or say to hurt someone. I am going to need encouragement during that time, but I'm telling you now that if I say something or do something to hurt you in any way, I'm sorry. Maybe I'll just go on a talking sabbatical then. HA! My poor students. They'll have to put up with grumpy Miss Morgan. Bless their hearts. But, today is today and tomorrow is tomorrow and I'm going to be just fine.

Please pray for me!

If you have any advice, I'm willing to take it... I am not a reader. I can't take anything out with me that I take into my room during my hospital stay. Any suggestions? This is strange... I have been getting tons of magazines. I don't know where they're coming from, but they're addressed to me, so they're not someone else's. There's somewhere around $5 on my account each month, but I don't understand. Maybe it's part of this thing I subscribed to last summer, but I thought for $5 a month, I'll keep it for now. I haven't looked at a single magazine. Yep, they'll be going with me to the hospital. I picked up a paperback Bible of Dad's last night in his room and asked if he REALLY paid $2.99 for it. He did! At Wal-Mart! I'll be getting one of those, too. Besides that, if you can think of something I can do that can stay, please let me know. Both the nurse and the doctor said something like, "Don't bring anything in with you that you'll cry because you had to leave it behind." Nothing will go with me except for my clothes which will be in the closet the entire time.

If you have been getting my emails, you know that I was totally frustrated about this therapy being pushed even further back. Chances are, if I had NOT seen the "wrong" doctor, I'd be hospitalized right now, or last week. I would have had to been admitted into a different area of the hospital knowing what was going on with Dad and being isolated. God knows what He's doing and that's a beautiful picture of His timing being perfect. IIII want it done when IIII want it done. God says "wait". I say, "Grrr", then I say, "OK, God. I see now."

I'll elaborate a little more later on some things I talked about and I'll make my blog prettier, but for now I'm exhausted. I need a good night's sleep. Thanks for reading. Until next time, happy trails to you!

OH! One more thing... I totally understand now why I apologize for things so often when other people don't think it's necessary. Dad got up for the first time since Wednesday last night (Sunday). The nurses had to get a portable oxygen tank and a walker and walk with him because he was so weak. We walked down the hall a little bit and he was doing really well. He stumbled a little bit and decided it was best he go back to the room. As he was going back in the room, he said, "I'm just sorry y'all have to put up with me" talking to the nurses! It's their JOB to put up with him! It's what they do! Our wonderful pastor had gotten on to me for apologizing for something that I guess I shouldn't have apologized for a few days ago. It's instilled in me. I get it (and LOTS of other things) from my wonderful dad! :)

So, now you know more than you ever wanted to know about your thyroid and about my RAI therapy. Sorry. WAIT! I am, but I'm not. Hehehe!

More next time!

1 comment:

  1. Hey Carrie! Welcome to the blogging world :) I was going to suggest reading, lol, but then you said you didn't read. Do you like puzzles? They make those variety puzzles/games books in paperback. (I always do those on the plane)