Long time no blog...

I haven't posted any updates in a while so let's see what's going on....

First I had my three month post op check up with my surgeon and of course it takes much longer to drive up there. Other than the keloid I have on one end of my scar, over all good report. She said I could massage the keloid out if I put some effort into it and discharged me from her services. Which is good news for me since that is one less trip I have to make up there. 

Second I had my TSH and T4 checked again just a couple of days ago and I am still very hyperthyroid with my TSH dropping to .021. I haven't heard from my endo yet, although I doubt he will adjust my synthroid any. Now I wish I got awesome symptoms of hyperthyroidism like weight loss. Instead I'm still fat with palpitations and I get extremely tired, which my endo says this has nothing to do with my TSH, so I don't know of it could possibly be a side effect of my RAI? Who the hell knows anymore. I've come to the conclusion that either way I'm I'm going to try to combat the fatigue holistically with diet and exercise. Wish me luck.

Time for a change.

So a lot has been going on since the last time I have posted. I got denied my FMLA, which I'm totally over that because I've landed a new job in the doctors office that I had interviewed with way back in March, just a week after my TT. They orginally gave the position to someone else and I thought well its because I have cancer, they see me as too big of a risk to have as an employee. Fast forward a few months later I get a phone call that they are expanding their office and relocating it and asked if I would still be interested in a job, and after everything that has been going on with the hospital of course I am still interested! Thank you, and because of Obamacare I cannot be denied insurance coverage for a pre existing condition. After everything has all been said and done my husbands insurance has been billed two hundred thousand dollars. They weren't lying when they said thyroid cancer was one of the most expensive cancers to have. Holy shit. After all the follow ups and tests for the rest of this year I'm sure we will be pushing the quarter million mark.

Speaking of tests I just had my TSH checked last week and it was 0.026 and I am freaking tired all the time. My doctor does not want to adjust my generic synthroid until the 6 month mark in September when I get my thyroglobulin checked and then if all looks good he will back off my meds. I'm currently on 150mcg a day so maybe I can combat the fatigue with some diet and exercise until then, I need to lose some weight anyways.

On Wednesday I head back up to Pittsburgh to see my surgeon for my 3 month follow up and I must say I think my scar is looking pretty good. It's never really bothered me anyways but it's healing nicely. I think just on the ends I might have to put some vitamin e oil or something on it to lighten it up, but other than that the healing process has been fairly easy and I don't know if it has just been out of sheer politeness, but other than my children I have not had one single person ask me about my scar.

One other thing, I want to post a picture of my thyroid cancer awareness paracord bracelet my friend made for me. I think it's pretty awesome and I hope you do too!

Well I haven't posted on here in a while. Mainly because I've been pretty busy diving right back into work. 

Trying to put everything behind me that had happened the past couple of months. Cancer is constantly on my mind. I can't seem to stop thinking about it, even though I am done with everything besides follow ups now, I always think about it. Everything seems to remind me of it. I don't know if I'm suffering some sort of PTSD. 

Finally after nearly 3 weeks I hear from the hospital about my FMLA and..... they have denied me! What the f*ck is that shit! They told me I still didn't have enough hours in. Are you kidding me? I worked all the hours they told me I needed an then some. It just kills me how this place treats their sick employees. I have cancer and you can't give me a fucking FMLA!? Don't expect me to go out on a limb for you, expect me to look for a new job, which is exactly what in doing. Take that job and shove it!

Rant over. 

Another day, another scan...

So here we are again. I got out of isolation yesterday. YAY! I was so glad to be among the social again, one of the first things I did was go to Walmart. I surprised my children by picking them up from daycare, and they were very surprised. My youngest nearly torn down a baby gate to get to me.
Moving on to today, which is the real reason for this post. I had my post treatment body scan today. My husband said "why are you getting another scan if you just had one?", and at first I didn't understand either but then they explained that with the higher dose of RAI in my body the scan would be more sensitive and if there was anything in my body it was likely to be picked up on this scan. This time I once again emptied my bladder, but unlike last time, this time they made me drink a glass of water then I got on the table. This nuclear med machine looked slightly different which made me curious as to whether this test would be any different from the last, so naturally I asked questions. The tech told me this particular test would take about 20 minutes and my doctor should have the results by the end of the day and it would be up to his discretion as to when he would contact me with those results..... Well it didn't happen like that at all. This test took 35 to 40 minutes. I hate these scans. You have to lay completely still, and even though you are all strapped down your body still has the urge to move. I swear my arms and legs went numb and I felt just a head and a torso on the table. Finally when my scan was done we were escorted to a patient consult room and waited for almost fifteen minutes before anyone came in to talk to us, and that was after my husband over heard the techs talking about me doing another scan. All of this sent me into an anxiety attack, to be frank the thought of it sends me into an anxiety attack right now. I knew right then and there they found something new.
So finally someone came in and vaguely explained that they spotted something on the scan but they are not sure what it is soft tissue, a lymph node maybe, but they would like me to do another scan and before they left I asked them where was this new finding and they said the chest. I immediately burst into tears after the tech left. This is not what I wanted to hear today, I just wanted to get a scan and be on my merry way. The last thing I wanted to hear was about my cancer metastasizing. Shortly thereafter the radiologist comes in after scrolling threw the images and said there was some uptake in the mediastinal area and they were not sure if it was my thymus or a lymph node or what, but the good news is, no cancer in my bones or lungs! There's gotta be a silver lining somewhere right? The radiologist suggest with the permission from my endocrinologist I have what is a spect cat scan done. It is a nuclear med cat scan that will pick up the RAI and will pin point the exact location of this uptake. I already have the RAI in my system so lets do it. I just have to wait fourty-five minutes for the machine to be free and to hopefully get an order from my doctor for the test. Make a long story short we get the order like fifteen minutes before the machine is free, ironically it's the same machine I had my earlier test on. No wonder it looked different! It is also a cat scan. So this test the nuclear med camera slowly circled around me stopping every couple of inches to take pictures, focusing on my chest. This took all of thirty minutes. Then I was put directly into the cat scan which took another fifteen minutes. Then we sit in the hallway and wait for the results of the test. For some reason it took a long time to load the images of the ct scan but once those were loaded the radiologist came out and talked to us almost immediately. The spread of cancer was located in my thymus, which he said was not uncommon in younger patients, and good news it wasn't a lymph node so no surgery. Since I already had the RAI, I am already being treated for it so now it's just monitoring me to make sure my thyroglobulin goes down and hopefully stays down. Blood work every four weeks for a year. Of course yearly scans. I'm done with Pittsburgh for a month, when I go back up for my 3 month follow up with my surgeon, then it's not back until September for a neck ultrasound, that is unless my doctor would like to follow me more closely for some reason. I've learned to expect the unexpected. So this day has completely drained me. On that note good night!

My second full day of isolation is winding down, only four more to go! Yesterday morning I woke up with a sore neck from the RAI killing the tissues in my neck, then in the evening I began to battle diarrhea which has lasted throughout today and is also related to the RAI treatment. The highlight of my day yesterday of course was being able to return to a regular diet for my evening meal. It consisted of takeout, I just made sure to order enough to get me through most of today.
Today I've been battling stomach issues all day. Also I have been very fatigued. I did sleep in and also took a couple hour nap. Other than that I've been very bored sitting down here. I miss my children terribly. I missed my oldest spring concert today. While my husband took the kids to Joey's concert I did manage to get outside and do some gardening for about an hour. It was just nice to be out in the sunshine. Now I'm back in my little isolation bunker for the night. I did just get my lab results from Wednesday and my thyroglobulin has gone up from 2 last month to 5.5 this month so my cancer was growing back and it just reiterates that RAI was the only option for me.
So this is just a little off topic but I wanted to share this anyways, my husband just called me to tell me that on his way home from Joey's concert he rescued a baby duck and then released it over at the pond in our neighborhood country club. Before releasing it, my four year old Audrey named the duck Cancer Ducky in honor of her mom since mommy has cancer. I wish I could be at home to give my daughter a hug and tell her everything will be okay, but I still have four more days....

RIA

Yesterday was my Body scan and RIA treatment. We had to be there bright and early at 8am which means getting up a little after 5 to get myself, my husband, and my kids ready in time. Now I had packed my bags the night before since I would not be returning home as I would immediately go into isolation as soon as I left the hospital. First thing is first drop my kids off at daycare and tell them goodbye for the last time for a week :*( then its the drive to Pittsburgh to hopefully not get stuck it traffic. I really want to get this day over with.
Driving to Pittsburgh traffic wasn't too bad just going into the tunnel once again, but we were at least on time. I checked into the radiology department and was called back almost immediately. Once again I took the mile walk back to the nuclear med department. I was asked to empty my bladder before the scan and then hop up on the table I was able to leave all of my clothes, shoes, and jewelry on, I just had to take my glasses off. I had a pillow under my shoulders to keep my neck in a certain position, which actually wasn't so bad, then there was this foam cup that my knees went into and a strap that went around my feet, and to top it all off, a body wrap to make sure I stayed nice and still. So the tech told me this scan would take approximately 45 minutes. The first 10 to 15 minutes focused solely on the area where my thyroid used to be the "thyroid bed" as the medical professionals refer to it, then the rest of the scan was on my whole body starting with my head, and it went slowly down towards my feet, and when I say slowly, I mean s-l-o-w-l-y. Now at one point in time when it got to about my pelvis the machine had to stop and adjust and I started to have an anxiety attack on the table because in my mind the reason it was doing this because it was focusing in on a cancerous spot. God I couldn't wait to get off that table, I couldn't breathe, it was awful. As soon as the test was over I was unstrapped and tried to sit up but I was so disoriented it took me a couple of minutes before I could get up. Then when I was ready we were escorted to a patient consult room while the radiologist talked with my endocrinologist about my results then they would decide how big of a dose of RIA to give me. While I was waiting I was to read and sign my consent for treatment for my RIA and sign the understanding of contamination. They have done a very good job of educating me up there so I had no problem signing them.
We waited at least 15 minutes before someone came in, which of course gets me all worked up thinking did they find anything on my scan. The radiologist and a resident came in and he tells me that I had 3 areas of uptake on the scan in the thyroid bed, but no where else. Well thats good news. I expected to hear they would find something in my neck, but I'm glad there is nothing anywhere else. So because I had uptake and because of my age, and because we don't want my cancer coming back my doctors have decided to give me the highest dose of RIA. The radiologist said the doses run from 50-150 and I'm going to get the 150 dose. I'm ready for this. Lets be aggressive, this cancer has been aggressive and we are going to kick its ass! Before I get my treatment I have to go back over to my doctors office to get bloodwork. They want to do another pregnancy test, even though I just had one 2 days before and a thyroglobulin and who knows what else. I'm still waiting to see the results of those labs. All I know is I'm not pregnant. So now it's a super long walk from one hospital to another, Presbyterian to Falk then back to Presbyterian. Now my RIA is coming from an outside pharmacy so we have some time to kill, so now what?
We went outside and walked around I watched my husband eat normal food since I'm still on the low iodine diet. I could really go for some Popeyes Chicken! So after watching him feast we walked back to the Presbyterian hospital, now for anyone who has never been there let me paint the picture for you. The entrance is tucked away in a little side street, even though its the main hospital in this network of hospitals. You walk in a revolving door and will go up and escalator. Once you get to the top it's like you've enter a plush hotel, not a hospital. There's a full service bank, a Starbucks, the biggest gift shop I've ever seen. So we sat in the "lounge " in these cozy chairs waiting on my next appointment time for my treatment. Down below are pictures of the Starbucks, and lounge I took.
Then at 11:30 I check back into radiology, was whisked back down the long hall to nuclear med to another patient consult room to meet with a woman from radiation safety to make sure we had our plan down before going home and she went over cross contamination and all that good stuff. Then it was time. I was called back into the lab where my pill was, asked to sign another form, and then they made me put on latex gloves. Now no one in the lab was dressed up like astronauts or anything. The woman who was handling the pill put on latex gloves also. It was it a glass vile in a lead container over in a window box, something that made me think of where Homer Simpson works. I took the pill, took my gloves off at the wrist and handed them to the tech and that was it. I was on my way home, no stops immediately home though. I had to ride in the passenger side of the back seat which I took zofran before my treatment so I was ok with the carsickness. My husband dropped me off down at my father-in-laws and that's where I have been ever since. Trying to think of it as a little retreat. Counting down the hours until I can have a regular diet again! Ahh food and boredom. You'll hear from me soon.

Prepping for the body scan..

Two days down, one to go. Yesterday we got stuck in traffic on the way to the hospital, which made us almost a half an hour late, but my day consisted of stat labs. Mostly waiting on a pregnancy test, which came back negative before I could get my first thyrogen injection. Even though these labs were stat, the turn around time for the pregnancy test was almost an hour and a half. So we waited in the doctors office and I got caught up on the latest news over the marathon bomber. Finally after getting my injection I was free to go. Now I had to get this shot in the butt, and it hurt! I feel like I did some major gluteal workouts!
Today I didn't have to be there until 11 but there was still congestion coming into the tunnels. At least this time we left 2 hours early. I got my shot then I had to wait 2 hours and head over to the nuclear med department. They called me back and I walked what seemed like a mile, into the Pittsburgh children's wing. The radiology tech walked my husband and I into a consultation room and vaguely went over what was going to happen the next day. Today I was only going to take a tracer dose of RIA, go home let it circulate through my body and come back the next day for the scan. Now since this was only a tracer dose I was not a danger to anyone so I could still mingle among the public. The tech brought this little blue pill in a clear tube with a biohazard sticker on it and a glass of water for me to wash it down it with and the words "bombs away" pun intended I'm sure. The pill was stuck in this container, so I gave it a gentle tap and the pill came out and fell on the floor! Son of a bitch! The tech picked the pill up off the floor and handed back to me to take. I'm thinking in my head, shit I really don't want to take this damn thing after it just fell on the floor, but I bet they had to order it from an outside pharmacy. I looked at the tech and said to her "I sure hope housekeeping does a good job!" And I took it, and they sent me home. Now they told me that my therapeutic dose might make me sick, but they didn't say anything about the tracer dose, and it made me very sick to my stomach. I had to rush home to get my prescription of zofran and take a nap so I'm a little anxious about the therapeutic dose. Here's to hoping for good results on the scan!