Part 2 of Isolation: Isolation and Leprosy

Sorry for the delay in finishing the story, but I needed to finish isolation... so my story was actually finished to be able to share it!

   I could be brief and say, "I came home on Friday."  But brief is not my style... right?  Here's the long complicated story.

   So, my husband was coming to the hospital to get me.  He was supposed to have an interview at work at 10am and a conference call at 12:30.  He planned to come get me at 12, after his interview, and take his call from the car.  On Thursday afternoon, when I was starting my treatment, as he was leaving the hospital, he was stopped by the head of the Radiation Safety Team.  This gentleman asked if he was going to be the one to pick me up on Friday and told him that I would be ready and done by 9am, 9:30 at the latest.  My husband told him that he would try to move around some of his things at work so that he could pick me up earlier than we had planned.  That same man then came into the room and told me the same thing.  I assured him that my husband was going to to do his best to be there early but that it wasn't guaranteed, and that I would let him know first thing in the morning.  Well, my husband moved things around but had a very tight schedule for picking me up.  He arrived at the hospital by 8:30am.  We then waited for the Radiation Safety Officer to come and release me to go home... we waited and waited.  At 9am, I called my nurse to ask if they could call for him because my husband was waiting and on a tight schedule.  It was hard for them to hear me on the intercom, since it was in a plastic bag, the nurse answered with, "there are special people for that..."  I know, that's why I asked for those special people to come to my room.  I then waited again.  Still no sign of him, so I called again at 9:30, we needed to leave right then for my husband to make his 11am interview (that he had moved from 10:00am).  I asked them to please contact the Radiation Safety Team so that I could be released.  I explained that my husband had been waiting for an hour to take me home because we had both been promised I would be released between 9 and 9:30, and that he had an interview to get to.  The nurse asked if my husband could go home and come back after I was released and I said, "No.  It takes him 1.5 hours to get here, he can't leave and come back and we need to leave right now for him to make his appointment."  She sounded sympathetic to our situation and I was hopeful we would see "movement" but no such luck.  By 10am, I got a call from my nurse who was just "checking in" and I again said that we hadn't seen anyone yet that morning and that my husband had now been at the hospital 2 hours.  She said, "Oh, I will call the Radiation Safety Team and see if they can send someone."  Um... what were you doing 1.5 hours ago when I asked you to do that very thing?  About the time I had been called, my husband stopped by their desk and asked if they had heard from that guy yet.  They called him while he was standing there.  Within about 15 minutes, the Radiation Safety Officer arrived to take my reading and said, "I didn't come sooner because you said your husband couldn't be here until later."  I reminded him that he told me we'd be done earlier and that I told him that my husband was going to move things around so we could leave earlier.  He sounded apologetic, but also was putting the blame back on us for saying that my husband couldn't be here that early.  No mention of being called by the nurses earlier... I don't think they even tried to contact him.  He took my reading and said he hadn't seen numbers that low in a long time (3 something, I was at 13 the afternoon before).  He said he would let my nurse know to start my discharge process and that I should change my clothes and get packed up, ready to go.  I changed quickly, expecting to leave quickly.  My husband contacted people trying to change things around, again... since it was now 10:30 and there was no way to get to where he needed to be by 11am.  By 11:45, I hadn't seen my nurse yet, so I called down to the desk to ask her if I was being discharged and reminded her that we were in a big hurry.  She said she was working on it.  She came down to my room at 10:55 and said that there was a problem and that the discharge orders from the doctor weren't in the computer and that they had called down for them to be entered again and were just waiting for that.  Just after 11, I got a call from a different person stating that she was my "Floor Case Manager" and that she had a few questions for me... she began asking me tons of quesitons, all of which I had answered during my admission process.  She ended with, "Is your husband coming to pick you up today?"  I told her that he had been there for 2.5 hours and that he was now very late for some work interviews and meetings that he had that day and that I had been cleared to leave 30 minutes prior and hadn't seen my nurse with the papers yet.  Just as I said that, my nurse showed up with the papers for me to sign, so I got off the phone with that lady and ran over to sign those papers.  We left the parking garage at 11:30, after my husband had been there for 3 hours waiting for me and had messed up his entire work day.  The whole thing was very stressful!  He had to drive me to his work.  I had to sit in the backseat of the van so that he and I were at the greatest distance apart possible for the long drive.  We got to his office and I waited in the car for about 45 minutes while did work stuff and wrapped up the majority of his work day.  He got in the car and asked what I felt like for lunch... I said, "I've been sitting here thinking that maybe Fuddruckers would be a good idea and that I could get a cheese burger and a milk shake there.  He replied, "Then it's a good thing I already called in an order for a bacon cheeseburger, fries, and chocolate milkshake."  It's crazy how well that guy knows me!!  We got the food and ate at a park, away from people and animals.  We then ran 2 quick errands while I stayed in the car.  We finally got home around 3pm.   I got out of the car and my 8 year old saw me and came running to give me a hug, I said, sharply, "Stop! Don't touch me."  She said, "Oh, I forgot" and ran and hugged my husband.  I then went right up to my room and got ready for being isolated from the family.
   My mom texted me from downstairs to tell me that my 10 year old had her school pictures to show me, I texted back and said that she could come up to show me.  I opened my door and had some tape across the floor of where they could sit to talk to me.  I sat back 6 ft. to protect her and we both sat down on the carpet.  She then burst into tears because she wasn't able to hug me.  I yelled for my mom, who came up and I said, "You need to hug her, she needs a hug!!"  It broke my heart!  The next few days made it clear that these restrictions were going to be very hard on everyone, even though they could talk to me.  They were hard days.  I was treated like a leper.  They were all afraid of me and I got yelled at if I came out of the room, even if I was wearing gloves, keeping my distance, and taking other precautions.  So, there you have it, being radioactive is basically the same as having leprosy.
   On Tuesday, I had my whole body scan.  Our 1 hour 15 minute drive into the hospital in DC ended up being a 3 hour drive into DC.  It was terrible, I wanted to cry.  I was 30 minutes late for my appointment and my stress level was out of control.  I got there and had my long scan: 30 minutes, followed by a 5 minute break, and then a 20 minute scan... followed by a 45 minute break.  I then had another 20 minute scan.  The doctor reviewed my scan with me and told me that everything looked good, the radioactive iodine was in all the right spots and looked like it was doing it's job.  She then told me that I met the minimum number of days for isolation and that as long as I still took some precautions, I could interact with adults and give my kids a quick hug.  She said I should wait another week before I interacted with pregnant women and children under the age of 2, though, and not let my kids cuddle with me for too long.  I thanked her and we then left to go home.  With my new found freedom, we went to Costco, I have never been so excited to go to Costco!  That afternoon, I went up to the school, as the girls were getting dismissed and hugged them as they came out of the door to the school... there was never a sweeter hug than those first 2 with my little girls!  I hugged my boys as they walked in after getting home and they were visibly relieved to be able to come in contact with me again.
    Wednesday morning, my mom and I went to scripture study class, then to Costco, then Target, then out to lunch to celebrate my birthday (early) and then on to Giant.  By the time I got home, I was absolutely exhausted.  I sat down on my bed and felt my entire body collapse beneath me.  I guess I forgot that I was killing off tissue inside of my and that takes a toll on the body.
   This morning, I woke up to now being 41 years old.  Yep, today is my birthday.  It was crazy to reflect on the changes that had happened in my life in the last year, especially the journey that I have been on in the last 5 months.  I am officially done with restrictions with my immediate family household interactions... which really is a great birthday present.  Unfortunately, I had to say good-bye to my mom today.  She has been a great help while she was here and it was comforting knowing that she was here to take care of the family when I couldn't.  Overall, I feel good, I feel supported, and I feel blessed.  It has been quite the journey!

LID, RAI, The hospital and isolation...

I don't even remember where I left off.  It's been a crazy past few weeks.  3 weeks ago, I started my Low Iodine Diet (LID).  There are basic restrictions but it is far deeper than the basics.  Basics: No dairy, No egg yolks, No sea products, No soy proteins, No Iodized salt, no commercially baked breads.  Seems simple enough, but here is the issue, there are things to know.  Carageen(sp?) is a sea product used to thicken things, it's in a lot of food, whey is used to increase protein in a lot of foods, and it is a dairy product.  The reason for the bread is that there are dough conditioners that have iodine, if it doesn't have those, it might be okay... as long as there is no soy, dairy, eggs, or salt.  Salt is okay, as long as it isn't iodized, the only way to know this is to contact the company and ask.  The nice thing is that I found a Facebook group that helps you prepare for LID and RAI.  They also have a website that allows you to search for foods and see if they are safe.  They have contacted all of those companies to find out who uses iodized salt and who doesn't.  LID Life Community has been a huge blessing.
   Last week, I drove 1.5-2 hours (each way) to DC.  I did this 4 times last week and 3 times this week (one of them staying overnight this week, so I was IN DC for 4 days this week, too.  My husband came with me most of the time and I had a couple of friends that also joined me.  I had others offer to come with me at various times, as well.  I felt very supported.  Last week, I got blood work (3 days), 2 shots, a low dose radiation pill, and a 2.5 hour body scan.  This week, I got blood work (1 time), 2 shots, and my treatment strength dose of Radioactive Iodine (RAI) which required me to spend the night in an isolation room in the hospital.  It was all very crazy.  Every flat surface was covered with blue hospital paper sheets.  Every door knob and handle (sink, toilet) were covered with latex gloves, the remote and phone were both in plastic bags, and the light switches were covered with blue tape.  It was funny.  My meals were brought in and put on a table near the door and then I would go get them after they shut the door.  I was given 4 towels, 4 washcloths, and 5 hospital gowns.  I was to put on a hospital gown and stash all of my other clothes in the closet and not touch it again until I got dressed to leave.  I was then instructed to shower at least 3 times while I was there, if not 4.  I was also instructed to suck on sour candies as much as possible after the first 2 hours.  There is some debate out there as to whether or not this is helpful or harmful.  My doctors believe it to be helpful (obviously) and so I did it... sort of.  I brought a mild sour candy and did not do it constantly.  This was to keep me salivating at a normal amount, but not excessively.  I felt like this was a good compromise.  I was also instructed to drink and drink and drink.  I did this.  I was as diligent as I could have been with this... but still didn't drink nearly as much as they wanted me to, but since the goal was to flush my system and I was using the restroom every 30-60 minutes, I think I was fine.  I had over a gallon of liquids.
   Taking the pill:  First, my nurse brought me an anti-nausea pill.  Then she left and I had to sign forms stating that I knew what I was doing.  There were 3 people who came in to my room before taking the pill and to watch the administration of the pill... the Nuclear Medicine doctor, the head of the radiation safety team, and they guy that came to give me the pill - he was some kind of specialty pharmacist or something, but he told me that he dealt with the radiation and radioactive substances all day.  He brought in a cart with a metal box.  The pill was in that box.  After all of the forms were signed, I was given the pill in a small portion cup.  I took it and the guy left, my doctor left, and the radiation safety specialist told me to lay back and that he was going to be just outside the door.  About 15 minutes later he came in and gave me a reading with the Gieger Counter and then he had me stand up and move towards the door.  He gave me the end of a tape measure (covered with a latex glove, for safety) and then he walked back 3 feet.  He took a reading there... 13 something.  I then stood at the door talking to an Endocrinologist for about 3 minutes or so, we stayed about 4 feet apart.  I then closed my door and didn't hear from anyone for about 2 hours when my dinner came.
   I had a fairly uneventful night, as far as my body goes.  No nausea, no diarrhea (which I was told was very common), and really nothing else.  I did start to smell a weird chemical smell as the radiation started to settle in my nasal cavity.  I had to pee a lot... a lot... which was good.  I couldn't sleep very well, but I was tired and fell asleep about 7:30 and woke up about 9.  At 9:30, I flushed my toilet and it never stopped flushing.  It was a loud, powerful, industrial toilet, so having it run nonstop for the next 30 minutes was quite an issue.  It was spitting water out the back pipes, so my whole bathroom floor became soaked.  When it first happened. I called my nurse and she couldn't hear what I was saying very well with the plastic over the microphone.  I kept repeating, "My toilet is going crazy.  It's my toilet!  It's going crazy!"  When she came into my room and saw what was happening, she said, "O-M-G!  I have never seen anything like that!  Oh, boy, who do we even call to fix it?"  She came back about 5 minutes later and said, "I've called maintenance."  At 10pm, the water tapered off and it just stopped running.  At 10:10, I got up enough courage to go in and flush and see if it did it again.  It flushed for an extended time, but did stop, like a normal flush.  At 10:15, 2 guys showed up from the radiation safety team.  They went in to assess the situation and determined that the glove that was on the handle had gotten lodged between the flusher and the toilet and was, essentially, holding the handle down.  I am not entirely certain that was the case, because I did jiggle the handle and there was no change.  However, once they removed the glove, the toilet was fine.  They then pulled up all of the protective floor coverings and put down new ones.  It was an adventure, for sure.  They left at 11, I took my shower and I finally fell asleep again at about 12.  I then woke up at 1, 2, 3:15, 4, 5, and 6.  Every time I woke up, I drank something, ate one candy, and went to the bathroom.  I was pretty tired in the morning, but was glad that I had slept some.  I'm going to stop this post here and continue with going home in the next one.