Phew! Where have I been? Let's see... my primary activities over the last few days, in rough order, have been 1) sleeping, 2) watching tv and movies, 3) talking on the phone. Gasp! I've regressed to adolescence!!! Heh. Seriously, though, fighting battles to the death can really tire a girl out, you know.
Under normal circumstances, eating would have gotten its own 1/3, but alas, I cannot taste food (much or the same). It's awful, I know. Go ahead and take a moment to weep uncontrollably on my behalf - I'll wait. That's better, right? Not that it matters too terribly much, though, because my tummy has been upset anyway. It's "almost certainly" temporary - a side effect of the radioactive iodine. Better be! The RAI concentrates in the salivary glands and they get pretty fried, as does the digestive tract, I'd imagine. Although they told me, you won't have any problems! It's great! Like it's some little magic pill. Except that IT'S POISON! ahem. Minor detail.
Truly, in hospital, I felt pretty much nothing. I was bloated beyond belief and my face puffed up, and I was tired, but otherwise... nothing. I did feel a strange sense of having been poisoned though. Not sick, just a sense that my insides were, in fact, cooking. The whole experience was so surreal and strange. But I'm getting ahead of myself.....
I'll start with the scan.
Adam and I showed up at the hospital at 10:00 for the appointment and they took me right back. I brought my iPod shuffle, so I got situated on the machine and they told me I couldn't move for 35 minutes. This large flat panel camera came down about 1/2 inch from my nose and stayed there for 15 minutes or so, then inched sllloooowwwlllyy down the rest of my body. No big deal. When I got up I could see the picture on the computer, with a really bright spot in my throat. That made me a little nervous. Then off to a different machine that took a close up of my head, neck and chest - 20 minutes. My neck was starting to hurt from laying with a pillow under my shoulders, but otherwise the whole thing was nothing. This time, the computer showed three big blotches in my neck. I started to get more anxious about the results at that point. I had two more scans to go. They did a 20 minute pinhole view of my throat, and a 20 minute picture on the first machine with two of the flat-screen cameras literally squashing my arms/shoulders together to get the sides of my neck/head. That was it. At that point it was nearly 2:00 in the afternoon! Poor Adam...
The doctor called us back to their little computer command center and put me on the phone with my endocrinologist. He broke the news to me that they wanted to go ahead and admit me for 100 mci dose of RAI. That's a small dose in thyroid cancer terms, but 3x as much as they were originally thinking. I was upset, but I tried to just let it roll off my back. I kind of began to suspect that when I saw the three blotches on the one picture.
Hey, the fun never stops in Cancerland! Always a new surprise waiting around the bend! And honestly, from the moment of my diagnosis up until I saw my endocrinologist two weeks post-surgery and found out he wanted to do an outpatient dose, I was planning for hospitalization anyway, so I guess it didn't come as too much of a shock. I wouldn't have felt like a full-fledged member of the Thyroid Cancer gang if I'd missed out on the isolation in hospital experience! (Behold my positive attitude! See how I talk myself into things!)
There were five areas of uptake in my neck and one, oddly, in my face. The doctor said that the chances of it being an actual metastasis in my bone was very, very unlikely. (Great.) He thought it was probably just - ahem - snot that took up the tracer dose. Back in my neck, there was one big, bright area and four little ones. Probably all left over NORMAL thyroid cells. BUT... with only a small dose of RAI, that big bright spot would probably absorb all of it and leave nothing for the four other spots or the one in my face, and they had to be sure and nuke those in case there was any cancer cells floating around in there. Even one little cancerous cell will eventually turn into a tumor. Fry 'em all, I say!
Ok, so let's get this party started. (What follows is really long!)
Getting ready for hospitalization.
Unlike some people, I had not been planning to go into the hospital, so we had to scramble around getting things together after we left the appointment. We had instructions for what to expect and I wanted to get things to bring in with me. It was all stuff I knew about already mostly, since I'd been preparing for it from the diagnosis. Adam and I were supposed to check in at 10:00 and after all the processing, etc., they would probably dose me at about 1:30. Adam could stay with me until that point, then I would need to be isolated - no visitors, no leaving the room.
Once I got to the room, I would need to change and put away everything I wanted to bring with me when I left. Anything I wore/used while in hospital had to be abandoned there because it would be contaminated. I asked about my glasses and they said those would be ok, we could just wipe them off before leaving. I also asked if I could have my cell phone in a ziploc, expecting him to say no, but he said that was ok too. I was to stay on the LID. I would need to drink plenty of fluids, and suck on candy every 30 minutes or so to make me salivate (since the RAI concentrates in the salivary glands, you want to keep it moving and not let the radioactivity just build up there). I was also supposed to take FOUR showers through the day/night!! I asked if I could bring old clothes to wear and a styrofoam cooler of food/drinks. That was fine too.
Here's what I brought with me:
1) Styrofoam cooler. I froze 6 bottles of water to keep the food cold, and packed chicken, lots of fruit (apples, apricots, blueberries, prunes), hard boiled eggs, a salad in a disposable tupperware, a bag of walnuts, and a bunch of cut up veggies (zucchini, yellow squash, baby carrots, tomatoes).
2) Water. I didn't want to worry about having to wait for someone to bring me water if I got thirsty. I brought 6 additional .5 ltr bottles of water in with me. They had stocked the room with about 8 large cups of ice water already too.
3) Old sweats. I found an old pair of warm pj pants, which were essential because they told me they didn't have any pants for me once I got there. I wore the hospital gowns over them, which was good because they gave me a big stack of them and I could change it every time I showered. I wore two at a time - one tying in back, one in front. I was really cold while hypo, and the temp had dropped too, so I was really glad I had pants! Adam donated an old sweatshirt from college that looked like it was already radioactive - it was BRIGHT Big Bird yellow! I also brought several old pairs of socks and underwear.
4) Sugar free candy. Jolly ranchers. The candy made me sick, probably partly because I'm sensitive to fake sugar, but also because I had to eat two an hour (yuuuuck). I also brought a ziploc baggie of baking soda for warm water rinses for the salivaries, but I didn't end up using it because my salivary glands didn't bother me at all in the hospital. Not till I got home. They got sore and swollen on Friday, and yesterday my mouth dried up and I lost my sense of taste. Today they are feeling much better, although the dry mouth/taste issue is persisting.
5) Travel size toiletries. Cheap toothbrush, toothpaste, Dove super moisturizing body wash, and super hydrating conditioner & shampoo. Also two travel size bottles of lotion. I knew my skin/hair was going to be done after 4 showers. I also had to wash my hands three times every time I used the toilet.
6) Magazines. I can't focus my attention longer than a commercial right now, so books are out of the question. Magazines are perfect and I brought in a pile.
7) Tylenol and Tylenol PM, even though they said they'd give me Tylenol if I needed it. Again, didn't want to wait on a nurse if I needed it!
Getting settled in at the hospital.
We got to the room and I changed and unpacked and we waited. Everything was covered in plastic or plastic backed padding - the floor, the bed, the pillows, the door handles, the light switches - everything. There was a huge stack of towels, washclothes, gowns, some toiletries, and the water waiting for me. I put my cell phone in the ziploc bag. The nurse came to check me in, then the nuclear safety tech came to explain everything to me and go over the precautions for after I left.
While I was in the hospital, the radiation was at its highest, so I had to flush three times, wash my hands three times, and take four showers. Once I left the hospital, I had to stay more than 3 feet away from people if we were going to spend more than an hour at a time together, for a few days. No sharing spit or any other bodily fluids for a week after - especially the saliva has particularly high levels of radiation. Avoid children and pregnant women. (No problem). Flush/wash twice for a few days. All body fluids - tissues, etc, in the loo NOT in the bin!
Getting my Superpowers!
The nuclear medicine doctor and his two techs, plus two nuclear safety techs came back about 1:30 and explained everything again. I signed on the line and everyone left while I gave Adam one last hug & kiss goodbye :( . The two nuclear med techs wheeled in this metal lock box. One of them pulled out a lead pill container and from that a glass vial, with tongs. He dumped the pill in a little paper cup and they literally bolted from the room before I had a chance to even swallow it!
A couple minutes later, the nuclear safety techs came back and walked in the room and right up to me. I asked if they weren't scared cause the other guys ran away! They said, "We know the real deal." Although they were getting some radiation exposure right next to me, as long as it was only for a minute or two, or if they were more than 3 feet away, the level wasn't dangerous. They measured me with a Geiger counter - 102.9 mci. I had to be at 14 to leave the hospital. They would come back at 8:30 the next morning to measure again and hopefully I could go home then.
I had to wait 2 hours to eat or drink anything. I hadn't eaten since breakfast so I was pretty hungry and the waiting was hard! At 4, the nurse called and said I could eat and did I want my tray? I said I just wanted some utensils and some hot water for tea. She met me at the door to hand off what turned out to be a cup of spoons and a tiny dixie cup of hot water. Um... ok.
I refueled, popped a candy, and took my first shower. Read, watched tv, drank water. Ate candy. She called back at 5:30 wanting to know if I wanted my dinner tray. I wasn't even hungry anyway, but I planned on eating my own food so I said no.
The night nurse came back at 8:00 to try to give me the dinner tray I didn't really want, but she said "just try it" and there were some fresh strawberries so I took it. Let me tell you, it was a darn good thing I brought my own food because the only thing they brought me that I could have eaten on the LID (including at breakfast) was fruit. The other items were cottage cheese, milk and a little bowl of soup I have no idea how they prepared. The bad part is no food can leave the room after I take it, so I spent some time flushing cottage cheese and soup down the toilet. Then I ate the food I brought with me for dinner, more candy, and took my second shower.
By that point, I was starting to swell up and my face looked puffy. I didn't want to shower again! I got into bed and put a pillow over my head at 10:30 or so, and managed somehow to fall asleep for a couple hours. I had to pee at 12:30, which is a pain because of the whole flush/wash thing. I managed to fall asleep again somehow, but the nurse was back at 2:30 to wake me up to drink water, shower and eat more candy (barf!). Eating candy and showering in the middle of the night SUCKS.
The next morning...
I slept again till about 5:30, when I normally get up, and then just lay there wondering if I should wake up or what. Finally I decided surely they would bring me a coffee from the nurse's station, so I got up. They laughed in my face (well over the phone) - no coffee, breakfast not till 7:30. I got irritated because I found it very hard to believe there wasn't coffee cooking somewhere nearby for people who stay up ALL NIGHT.
At 6:30 I decided to eat my breakfast and as soon as I finished, the nurse came in the room. She just walked right in and grabbed my arm and started taking my blood pressure! I was shocked! I said, "you know I'm radioactive, right?" She just laughed and said, "Yeah, have you seen the outside of your door?! Your levels have dropped off a lot by now." I asked her for tea and she said she'd bring some. She didn't bring it till almost 8:00. I asked for breakfast/coffee at 7:30 and they didn't bring that to me till almost 9:00.
The whole coffee thing really had me fuming - I couldn't believe I didn't get fed and couldn't get a coffee until 9:00!!! In fact, it was the nuclear safety guy who finally brought me my tray after he measured my radioactivity!! If I hadn't had my own food and was just sitting there starving, I think I would have lost it - I was already over-emotional from hyponess and the whole isolation experience!
Free to go!
The nuclear safety tech had called at 7:30 and said to get a shower and they would be there in an hour. I showered AGAIN and ate some more candy (did I mention how barfy this was???) They were right on time - 8:30. Measured me with the Geiger counter - I was at 6.4. From 100 the day before. So it falls really fast out of your system. He told me I could leave and went over all the precautions with me again.
Adam called at 9:00 and I said, "please come get me NOW and bring me some DAMN COFFEE! Please." He was there by 9:30, coffee in hand - bless his heart - and went off to argue with the nurse. Of course there was some mix-up with my discharge paperwork (of course). My endocrinologist called and told me instructions AGAIN and said I could leave! Thank GOD!
I changed back into the clothes I arrived in, gathered my cell phone and we left. It was strange walking out of the hospital - all those unknowing people! I tried to stay as far away from anyone I passed as possible. I sat in the back seat on the opposite side of Adam and he drove me home. I've never been so happy to come home in my LIFE. I had prepared my apt - set aside the pillows and blankets from the couch that couldn't be washed in the machine, pulled up the bath mats and made a little sitting area on the opposite corner of the living room for Adam. He stayed with me about an hour and then went off to get himself ready to work the weekend day shift.
Home but not home free.
I started feeling poorly at that point. I was really tired, and my salivary glands started to hurt. I just took a nap, then lay on the couch until bedtime. Yesterday I felt pretty much the same, but my mouth went dry and I couldn't taste the same as before. I was getting worried and just wanted it all to be over with, but it felt like things were getting worse!!
This morning I started my thyroid hormone again, and I really feel better already. My salivary glands feel better already, and my tummy too.
I go back in on Tuesday for another whole body scan, then I won't have to worry about it again for a year!!
I am SOOO glad that is behind me now and I can concentrate on getting back to NORMAL!!