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Tuesday, April 30, 2013

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!

Friday, April 26, 2013

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....

Thursday, April 25, 2013

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.





Tuesday, April 23, 2013

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!

Sunday, April 21, 2013

My last day

Today is my last day of work. Hopefully I have all of my hours in for my FMLA and HR does not find some sneaky way to screw me out of it. I am also 5 days into this low iodine diet, and frankly I am not fairing well on it. I am sure there are people out there who do wonderful on it, I however am not one. I guess under the right, less stressful circumstances I could be. I started out making 3 quarts of homemade low iodine spaghetti sauce which I use on my gluten free spaghetti or cook with a piece of chicken and I did make a very tasty salad dressing consisting of balsamic vinegar, honey, and fresh squeezed orange juice. Simple yet it worked. Other than that I have survived on unsalted nuts, some fruit, and a veggie here and there. Sadly I've been averaging only about 700 to 800 calories a day. Between working all the time and the stress I just haven't ate. I know this isn't good for a body in healing, but hopefully I will rest this coming week when I'm in isolation since I have nothing else to do.
So I have to be up in Pittsburgh tomorrow morning, first for labs, a pregnancy test then my first thyrogen injection. Tuesday it's back up to Pittsburgh for another thyrogen injection then my full body scan. Sigh, I only hope I can ingest my contrast for it and not have to be injected. Then back up to Pittsburgh on Wednesday for more lab work and my treatment. Thursday I can resume a normal diet. I am exhausted just thinking about all of that! I hope my body scan doesn't show anything since my initial cancer was so advanced and I can't wait to just rest. I will miss my children during this time, I will try to post each day up in Pittsburgh, usually they are all day events. Hopefully the weather will be nice enough for me to enjoy the outside while I'm up there. Wish me luck!

Saturday, April 13, 2013

T minus 3 days until I start my low iodine diet. So since I have a day off (which is a rarity anymore) I'm going to venture out to the grocery store, 3 kids in tow. Joy oh joy.
I think I have focused more on what my last meal is going to be pre diet, more that what I am going to be eating on this diet. Something salty, maybe loaded in cheese as I think I will miss that the most. Oh glorious gooey cheese.
Finally last night I did look up the low iodine cookbook on thyca's website. It is seriously 123 pages long! I just don't know if I am feeling frisky enough to actually make these recipes. It's not that I don't like to cook but with working my a** off trying to get this FMLA that I'm not fully confident I will get I just don't have the time to cook these fully involved recipes. Secondly I have to factor in my gluten intolerance which then limits my diet even further :/ and I feel like I have to cook a separate meal for my family.
Despite all of this, I did manage to make a small pitiful shopping list, mostly of snack foods. I mean I don't want to eat mashed potatoes made with water. Blah!
I figure I have two options, I can either starve or, I can eat as much food as I can for these next couple of days and then hibernate kind of like a bear and just live off of my fat, I mean I have enough, waking only to go to work and to travel to doctors appointments. I imagine I will be very happy on the scale at the end of this diet. Wish me me luck in my shopping adventures!

Friday, April 5, 2013

I actually have a day off which means I'm trying to catch up on cleaning, for some reason my family seems to think this task needs to fall solely upon me. Since my surgery I no longer have sleep apnea so I have the energy to do so I don't mind, too much. I am a little tired from working all the time trying to get all of my hours in for FMLA and being on the go constantly, so that's starting to ware me down.
It's eleven days and counting until I start my low iodine diet, and from what I understand I pretty much can't have anything. No dairy, chocolate, soy, seafood, or anything made with seafood. I can have fruit and veggies excluding beans and potato skins up to five ounces of lean meats a day and in my case gluten free grains, and unsalted nuts. I have to do this for nine days. This should be a nice little weight loss diet lol. I'm already planning my last meal. Being from a small town I have already tried to find substitutions for things such as milk and butter to make those nine days just a little more tolerable, but everything either has salt, which I don't know if its iodized or not or it has some seaweed extract. So I guess I'm just going to have to tough it out :/
I was scrolling through the thyroid cancer support group on fb this morning and stopped to read about Roger Ebert, I knew he has passed away but did not realize it was from thyroid cancer. He was diagnosed and had a tumor removed back in 2002 it had came back and spread to his salivary glands I do believe. Although the article did not state what type he had. Even though thyroid cancer has a wonderful prognosis it does take lives, and his journey is not my journey and it might not be your journey, but I think people tend to forget sometimes. When I was first diagnosed it was by an ENT doctor he said that with treatment I could be "cured" and I'm finding out its more like a chronic condition than anything and so many say to me "oh you have the good kind of cancer" we'll that's a very uneducated statement I know it's meant well. I'm being told by my doctor that I might have cancer in my lungs or bones, really the good kind? So I just sit and wait for my body scan on the 23rd of this month. Now I work the next four days... But I'm still alive!

Tuesday, April 2, 2013

FMLwhat??

So I feel like at least temporarily this blog is becoming more about me fighting to get an FMLA and less about my cancer. Once again HR is jerking me around. They are now telling that I am still 127 hours short of my FMLA. Back in January I was told I only need like 121 hours, and I had worked all of those and then some. Unfortunately this was only verbally that I was told. This time I have emails that I am printing out and saving. Unfortunately if I work every day that I am scheduled up until I have to leave for treatment I'm still going to be 24 hours short. I've resorted to asking my fellow coworkers if they would be willing to let me work some of their days so I can have all of my hours in. They are more than gracious to help me out :) Trying to fit these in between doctors appointments and such is a bit challenging but I'm just putting the iron woman game face on, trying to work 6 days this week alone. I really think HR is trying to kill me, and to think they don't even pay for my health insurance! And I'm really not asking to get paid while I'm gone, I just want to know I can seek much needed medical treatment and not have to worry about job security. It seems like such an oxymoron considering my employer. If you don't hear from me for a while its because I'm working my ass off...