Post Therapy Scan Results

Well before I talk about how horrible isolation was to be away from my family, I feel like I need to talk about the results of my scans following my RAI. 

My Momma drove me to DC last Tuesday (3/10) which was day 7 of isolation. Upon arriving in the Nuclear Medicine office I have to say I was in pretty good spirits – I knew this was the day that they were going to release me from isolation and when I got home I could hug my babies. I had quite a few health issues going on (that will be covered in my Isolation blog so stay tuned) but nothing could hold me back. Don’t get me wrong, I was nervous, so nervous – but this was the beginning of the end. I thought that today I could write on my calendar that I was on my road to remission. 

My appointment was at 9:30am and I honestly wasn’t sure how long I was going to be there. I thought it was going to be one or maybe two quick scans. Nope – two full hours of scans. Much like one of my full days of scans prior to RAI. Except this time I knew what expect and I was much more restless this time around. The first time I knew I wasn’t getting results that would mean anything or change anything, this time it would – at least in my mind. There was no dozing off in the machine for the 20 or 40 min scan, that’s for sure. 

Finally, I was released! I came back up front to my Momma and looked defeated haha. I was exhausted and hungry and ready to hear the results! About 10 minutes later the same Technician came back and told me she needed me to come back for one more scan. I immediately looked at my Momma with fear in my eyes. That was NOT good. They took me in a room I’d never been in, to do a scan I’d never done before. She told me “We saw uptake in your breast….” and that’s all I heard. She asked some other things and I shook my head to things that I have no clue what she asked. I fought tears as she disappeared from the room to get something. She was gone for 10 minutes. I had to do this scan for 45 minutes – it was horrible. My arms were pinned above my head and these 3 huge instruments circled around me as I laid flat. It was scary and I wanted to be done. Finally I was able to go out to my Momma and just cried and told her what they said. Within minutes they came out to get us to discuss the results. 

Normally when they have brought us in the back to discuss results, we are taken to the doctors area where we can see the scans while we talk. But this time we walked right past that door and around the back to a conference room. This is definitely not good. 

We sat down and in came in the Nuclear Medicine Doctor. She sat down and explain that originally thought that my Cancer metastasized in my breasts but after the scan they actually see that it’s spread to both my lungs. Because the type of scans only pick up the radiation in a “2D” way there is no way to determine how bad it truly is but they are recommending that I get a CT with contrast to determine if it’s microscopic or nodules. 

At this point I lost it….so did my Momma…..

With a CT, if it’s microscopic – they might have to do another threatment of RAI in 6 months. If it’s nodules, surgery might be needed and in some cases even part of the lungs (which would require therapy to learn to breathe with less). All of this VERY is doable, but VERY scary. 

I just had my CT today at Washington Hospital as they always seem to take great care of me and they are one of the top Thyroid Cancer facilities in the Nation. I know they will continue to stay on top of things. I have a follow up appointment on Thursday with my Endocrinologist. As most everyone knows by now, it takes a few days or sometimes weeks to fully digest this information before I can put it out there for the world to know so please bare with me. Thank you all for your overwhelming love and support for our family! 

Although we don’t know a lot of information right now, the one thing we do know is that everything is going to be ok. Might not be tomorrow or next month. But it will be ok. Thank you for your thoughts and prayers. ­čśŐ

Radioactive Iodine – Week 3 (Part 2)

Just last Tuesday night my Momma got into town and my anxiety was beginning to spike. It was the night before I went in for my full dose of Radioactive Iodine and last night with my family before being put in isolation. I wanted to soak up this moment but knew I needed to keep the kiddos in their routine for everyone sanity. We had a fun family night with the Wii Mario Party 8 – love that game!! We even let them stay up until 8:30pm on a school night, which everyone knows that Mommy does NOT do because I just didn’t want to kiss them goodnight. Eventually the fun times ended for the kids but not so much for us, the adults (or older children if you will) took the opportunity to start a new game and played with just the four of us!! It was so much fun and brought back memories! I surely didn’t want the night to end early because I knew of all nights, I wouldn’t be able to sleep, so we were easily able to persuade my Mom to stay up a while to drink a few and talk and hang out. I think we all went to bed between the hours of midnight and 1am – whew it made for a rough wake up call Wednesday morning!!

I tossed and turned much of the night, kept staring at the alarm clock between the hours of 3:30pm and 6:00am so finally when my alarm went off at 6am – I decided to get up and take a shower before my kiddos got up. By the time I got downstairs, my Mom already started to get the kids fed. I pulled out my binder the hospital sent me prior to starting all my appointments – yes I have a 1/2 inch binder from the Nuclear Medicine Dept. It has so much information in it that you seriously can’t read it all at one time (but I have twice) – but I still had to pull it out and read the RAI treatment day one more time. I started to pull all my jewelry off (because of course I forgot that I had to do that – and made me sad that I had to take my wedding band and engagement ring off). I did keep my “Noone fights alone” Thyroid Cancer wrist band on because I knew I could replace it if they kept it in the hospital. I wasn’t sure if I would need it for strength while I was there. I also needed to make sure I packed baggy for both my cell phone and iPad. I made copies of the couple of pages I thought were important pages of information I needed with me in the hospital.

What to pack (and I packed everything in one of those $1 reusable grocery bags):

  • I packed┬ámy medication┬áloosely in individual baggies for two days (in case I stayed an extra day – as instructed).
  • My MIL bought me two large bags of sour lemon candies and I only brought one bag with me just in case they only let me bring one back with me.
  • Gatorade or lemonade or tea or another favorite drink aside from water. Trust me – you’ll want something other than water. I brought 2 gallons of Gatorade.
  • Magazines or other reading materials that you are willing to part with. My MIL had been saving them for a while for me and these were lifesavers.
  • iPad/Phone/Chargers (as long as your hospital will allow) – Washington Hospital allowed it as long as they stayed in a baggie so please be sure to ask before you bring. Honestly I read more than anything because I kept falling asleep during my shows and it was very frustrating.
  • You will need two forms of ID (your license and a debit card) in order to sign the paperwork so they are able to give you the radiation. And of course your insurance card – don’t forget that! I kept those three cards in a baggy and kept with my things.

I was thankful to have gotten most of everything packed and ready┬áthe day┬ábefore and was even able to take the kiddos to school/daycare with my Momma. Once back at the house I attempted to get a banana down (if only I’d known how long I’d have to wait until another meal I would’ve tried a little harder lol). Said my goodbyes to my Momma then Spencer and I were on our way to DC by 8:30am. Once we got to the hospital, we got to the admittance area and literally got checked in right away as there was no one else there for in-patient. Spencer felt so silly carrying the 2 gallons of Gatorade but as soon as we walked in, the lady flagged us down and told us we were in the right area. After waiting another 45 minutes, we finally got called saying that my room was ready.

Once we got up to the room, I think that’s when reality really hit me. Every square inch of the room was covered with something. The floors were covered and taped together with blue absorbent pads ┬á(the ones you under you after you have a baby). The door knob to the bathroom and hot/cold to faucet were covered with surgical gloves. The TV remote was in a special baggie. I wasn’t allowed to touch the light switches so that meant I had to sleep with the lights on. The window shelf was lined will mini pitchers of water and ice. The nurse came in took my blood pressure and my temperature. She let me get things situated in the room and get changed in a gown before coming back in. At that point I put my clean clothes (that I just wore for a total of 3 hours) in a gallon size baggie that I secured in a closet on the opposite side of the room (closest to the door) and I was not allowed to open that closet once I took the RAI.

Eventually Hutch, the Radiation Safety Technician, whom my husband would describe as Bob Sapp┬áphysically because he was a big dude – he was like 6’4″, muscular, scrubs that were way too small for as built as was, he had a huge bicycle chain for a wallet chain but the minute that he started talking to you – he was seriously the sweetest and funniest man ever! He explained the whole process and what to expect throughout the night. I wasn’t allowed to eat anything until at least 2 hours after I was given my RAI. I would need to take a shower, urinate, and suck on lemon candies every 2 hours. The purpose of the lemon candies are that they actually keep the salivary glands working – otherwise the radiation will continue to settle in the glands and they will become blocked and extremely swollen. He also said that if I got sick and vomited during the time that I was in there that I would need to let the nurse know because they would need to test my levels to see if I would need to take more. With that being said, I would be given Zofran prior to the RAI but if I did feel sick I should head straight for the bathroom. This became a very big joke for my Hubby because this very large man trying to say in a very lighthearted way, and in VERY different words but basically not to trust a fart. Hutch tried to emphasize this because he would be the one that would have to clean up any messes and obviously wanted to avoid that at all costs. This was very amusing to my Hubby and he decided to pass along the message to my best friend and SIL and implied that I may have had a problem…thank God they know his sense of humor!!

Anyways….we waited a good 2 hours for the Zofran to get up to the room and then another 20 minutes before the RAI. My dose was supposed to be 275 mci but as long as it’s within the 10% when it’s measured. So my final dose was actually 265.5 mci. The Nuclear Medicine doctor came in explained the risks once again, I signed more paperwork then I said my goodbyes to Spencer to 3:15pm. Then they placed 3 doses of RAI into tiny cups and I had to swallow each of them with the little water in one cup. Shortly after the nurses emptied the room and Hutch came back in a couple minutes later ┬áto get my radiation levels. At three feet my levels were at 49 millirems/hour, after that – I was alone. They shut the door, put the radiation sign in front of my door and I had to wait 2 hours before I could eat – it had been since 8am since my banana…yes I was hungry now…..

I started off with watching Grey’s Anatomy – I had been watching it on Netflix from Season the last couple months but still had a few seasons to go. But I just couldn’t focus or get comfortable. I think I got up and out of the bed at least 3 or 4 times in that first 1 1/2 hours. Just to walk around and look out the window or stretch my legs. I turned on the news for a little bit which was just dumb, we were expecting 6-10 inches of snow starting the next morning so that’s all they could talk about. And all I could think about was making sure my Hubby could get here safely to pick me up the next day. Or that my kiddos would no doubt have a snow day and I wouldn’t be able to take the sledding which was one of my favorite things for me to do as a family. So I quickly tried to make myself lay down and take a nap…I think we all know that didn’t happen but wishful thinking. Starting at 4:30pm I was able to starting drinking and sucking on candies, which I swear only made me more hungry! Eventually 5:30pm came slowly enough and I was allowed to eat!!! YAY! I called the nurse and she said she was going to be down in about 10 minutes. Unfortunately, 6pm came and went and still no food. I called again and she forgot. She did feel horrible but come on lady….I was hungry! Then I saw the food. Haha I forgot I was still on my diet and it was hospital food – yeah this was horrible. I barely ate but at least I ate something!

I continued to follow my routine of chug gatorade, eat sour candies, go to the bathroom, shower, watch Grey’s Anatomy, fall asleep, wake up, read magazine, repeat! I originally told many people to call or text or FaceTime as much as possible but honestly I was so tired and busy doing what I needed to do or just didn’t feel up to talking much like I would have thought. I know one of the best things I was able to do was Skype home – seeing the kiddos, my Hubby, and my Momma!

It was definitely a hard night with my alarm going off every 2 hours and I honestly thought it would take more discipline but I guess when you say this is what is going to get rid of your cancer then you just don’t it without question. Once daylight hit, I was ready to go, and so was Hutch – he had the Nurse call first thing in the morning and got me ready to be released. When he came by to check my radiation levels they were down to a 10, which is awesome!! They have to be under 14 before they can release you. The nurse came down and went over all the discharge paperwork and I was free!!! I was able to change into my normal clothes and got to sit downstairs until my Hubby arrived.

Of course, because it’s the week of the year for the DC metro area so it’s taking my Hubby a while to get to the hospital. I decided to sit in the one seat furthest away from anyone from a lady in the in-patient admissions area. She saw my Gatorade and asked if I was there for RAI – long story short it ended up being someone from my FB Thyroid Cancer Support Group. What a small world that we ended up both being there in the same room as she was waiting to be checked in as I was checked out. We ended up talking for an hour.

Once my Hubby got there that started what what no doubt one of the hardest 7 days of my life….isolation. And that will be a blog for another day!

Depression during RAI

Needed to take a quick detour from my Part 1/Part 2 blog to fill you in on a matter that I feel is something that is important and is something that just about anyone might go through in these circumstances.

Depression. The word seems so silly when we are only talking about 7 days worth of isolation. I know I’ve said before that many people have mentioned before that I should look at this as a mini vacation from any responsibilities or kid duties. But to me, and I don’t want to speak to everyone, but I feel like as a Mom – this is way harder than the recovery for my surgery because I could hug my babies and spend time with my family.

The first day home in isolation wasn’t so bad because I saw everyone briefly, hear stories from my kiddos, and I slept horribly in the hospital so I came home and caught up on my sleep. The second day was a little harder because the kiddos had another snow day and they were all wound up downstairs playing with my Hubby, my Mom, and my brother. By the 3rd day, I started to try to straighten my room up and took two showers, even took a bubble bath – tried to listen to my book on tape that I’ve been dying to listen to that I’m never able to because the kids are so loud in the van. But I was so distracted…thinking that my Mom is finally in town and I can’t sit downstairs with her and my kiddos keep popping their head in the room just to say “I love you!” when all I want to do is pull them in the bed and snuggle with them. I want nothing more than to have my Hubby sleep in the same bed again and give me a hug and kiss and say everything is going to be ok. And even though I find it quite amusing when my little brother jumps away from me, screaming “RADIATION!!” every time I come downstairs to fill up my water bottle, I would love to sit down with the adults once the kids are asleep and actually watch a movie.

I know this all seems pretty petty but the last few days seem to drag on forever when you are trapped in a room with nothing to do but watch TV or movies when you constantly fall asleep. Or attempt to read a book when you can’t seem to concentrate. And then we get to the diet – I can FINALLY eat normal food again. I’m not sure if my stomach is still upset from the RAI or if its from trying to eat normal food 2 days in a row but ever since I haven’t been able to eat. So throw in an upset stomach in the mix and all you want to do is sleep. I think I slept a total of 18 hours yesterday. I know my body is actually drained for all the work it’s trying to do – I mean, come on…it is trying to kill cancer. That is pretty hardcore stuff! But I wanted to do nothing but sleep or cry or stare out the window. I know all of which are signs of depression. And I wanted to do nothing about it. My phone went off a few times when I was sleeping and I didn’t pick up the phone to call any of those people back. This makes me even more sad because I am not this person.

I heard my kiddos climbing in bed at night but they decided to come be silly and show off outside my door to make Mommy smile first. Then they heard Daddy yell up the stairs “Y’all better be in bed by the time I get upstairs!!!” Haha I’ve never seen them run so fast to bed as they both yelled “I love you” and blew kisses to me. After about 10 minutes I was upset with my Hubby because I wanted nothing more than to go in and tuck them in myself. On any normal night this would not have upset me like this but I went downstairs and asked why it was taking him so long to tuck them in. He looked at me shocked as I had tears running down my face. I went back up and got in my bed so after he said goodnight to the kids he knew how upset I was and came to talk to me. I cried myself to sleep. I knew there was nothing he did wrong – it was all a part of the process.

I wanted to write this post because I wanted people who are going through RAI to know that it’s ok to feel this way and that it will get better. I slept horribly last night but I decided I wasn’t going to spend the entire day in the bed. I got up and took a shower and wrote this post. I’m going to attempt to eat breakfast then I’m going to see if someone will take the kiddos to the playground down the street so I can get outside and watch them have fun. (Before anyone freaks out – I will make sure to keep my distance from anyone to ensure I will not expose anyone). I might still feel bad this afternoon when I have to come back to my “dungeon” but that’s ok. I only have a couple more days of this before I can *fingers cross* have all this behind me.

Radioactive Iodine Therapy (RAI) – Weeks 1 and 2

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I felt that I was finally emotionally ready for another post. I know that its been a good couple weeks since a post event though that was not my original intention. I wanted to post every couple of days to let everyone know what every step of the process was and everything that went into my therapy, especially for someone that was about to go through it themselves but I found that I couldn’t handle it, emotionally, mentally, and physically. The last 2 1/2 weeks have been draining, as I’ve spent most of th´╗┐e time driving back and forth from Bealeton, VA to Washington, DC for my daily appointments. This is “only” a 48 mile hike much more goes into it than it may seem. 

On most days I was in the Nuclear Medicine office for about an hour but there were about 3 days a week that I had additional scans that needed to be done. Just about every day for 2 weeks I had to have a Whole Body Scan and blood work to determine how quickly my body was metabolizing the small tracer dose of the radioactive iodine (given to me on 2/18). Each of my arms were completely bruised from getting bloodwork each day but you do what you gotta do! I was put in isolation at home for 48 hours where I could not be more than 3 feet away from someone and could not be around someone for more than an hour. My kiddos stayed with family during this time and even missed a little school (thankfully only one day due to some snow days). There were other days that I was there for 3 1/2 hours where I went from one scan to the next for anywhere from 20 minutes to 40 minutes per scan. I am somewhat claustrophobic so my anxiety was through the roof on these days as the scanners came just an inch from my nose and I had to fast on these days so I was always very dizzy, tired, yet had a hard time getting through it with a major headaches from not eating. Needless to say, by the time I got home, after another 2 1/2 hour drive home, I was beat and wanted to do nothing but sleep.
 

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I didn’t have to drive into DC by myself because my amazing SIL offered to drive me into DC to each of my appointments. I seriously don’t know what I would’ve been able to do without her because I was in the process of transitioning to new anxiety meds. Without her, it would take, at least, 4+ hours ONE WAY to get to each of my appointments without the use of the HOV lane, not to mention, I would not be able to cope with the traffic at this point with my anxiety or the loneliness of driving that distance or depressing sitting in the Nuclear Medicine office. Let me tell you, I was the youngest one there and probably one of the few patients that still had their hair. This also meant that with every snow day we had to adjust our schedules to make sure each of our school aged kiddos were taken care of and our younger kids were with my MIL, or our neighbors. Let me just tell you, this took a lot of planning because this just happens to be the most snowy time of the year for the DC Metro area – go figure right?!?! For Fauquier County alone we received 6 snow days, 2 two-hour delays and 1 early dismissal due to snow….yes this was all within a 2 1/2 week time period. And I am currently writing this on another snow day…..on MARCH 6th! 

Back to my driving issues/anxiety….most people didn’t know that I was driving to McLean once (sometimes twice) a week to train the person that would be covering my work during my leave of absence. I am lucky enough to have the ability to work from home most days. My anxiety was so out of control during the beginning of February that I was having 4-5 anxiety attacks per week and the anxiety medication I was put on was actually making me fall asleep at all hours of the day. My Hubby has been working night shift for over a year was working extra hard at home to make sure the kids were being taking care of before leaving the house so that if I did fall asleep, everything would be ok. I also had many family, friends, and neighbors calling constantly to check on me and ready at any moment to take my call if I was driving and/or needed help to stay awake to make it to my destination. Well after making another trip to McLean for work, I ended up falling asleep at the wheel and rear-ended someone. Thank God the man in front of me was OK, my kids weren’t with me, my van was fine and and SUV in front had minor damage to the bumper. But of course this put me into another anxiety attack as I couldn’t find my insurance card (we just renewed so I guess I didn’t put the new cards in the van) but the guy was SUPER nice and let me email him my information when I got home. As soon as I drove off another anxiety attack came on, I pulled over and my MIL calmed me down. Once I finally got home, I immediately called my doctor and we went through a few days of changes before we finally decided to change meds all together. I told this part in detail because we all know our bodies, I should NOT have let the excessive sleepiness go on for 4 straight days and let this happen. The doctors have let me know that might be part of my new norm but it might just be that I need to find my “triggers” and ways to calm myself down. I have sense been changed to a new anxiety medicine and LOVE it! It’s been 3 weeks on it and 1 1/2 weeks since my last anxiety attack! Even with all this craziness going on in my life – I’d say it’s definitely working! Especially when my last anxiety attack was when we had to drive home in the sleet/snow! 

I plan on finishing part two of the story in the next couple of days but I felt up to putting a few words down today so I took advantage when I could. I did want to take a moment and say thank you to everyone to that has been there to help, support, love and listen when we needed it most!