Ups and Downs

Things Are Going Well

2008-10-24T22:59:00.000-07:00

So medically I have been doing rather well! I have started to get my energy back now that I have been back on Synthroid for a few months. It is great. If it is not one thing it is another for me though. I was in a car accident last week but it was not that bad. I am having a rather interesting time though due to the memory issues that have followed. I find myself taking 3 showers a day, staring into space, and walking into room with no purpose. These are all things that I have been doing because I have been rather forgetful. I feel like I have the slightest glimpse of what it is like for some elderly people. But I am hoping this will only last for a short period of time. It has made it rather hard for me being midterms week. My grades are no longer perfect. But at least I am still alive and living for me!

No Radiation!

2008-09-04T15:24:00.001-07:00

Well I talked to the oncologist today and plans have changed. After speaking to Dr. Ain it is recommended that I do not do radiation. He believes that the risks of radiation treatments outweighs the benefits for now at least. I will be going into the doctors office every six months to have levels tested and as long as those levels come back normal I am in the clear.

This has been a back and forth journey about the radiation treatments but it is over for me. I am starting my synthroid tomorrow morning and am very glad to do so. I have been so tired and weak the past few days. I will still be blogging on here for everyone to see.

All Clear For Go... Almost

2008-09-02T12:55:00.000-07:00

I just spoke with the oncology office and I have an all clear on blood results. They are still waiting for the TGH antibodies level to come back though. But the TSH levels are at 99.8 as of Friday last week. This means that the no iodine diet has began in preparation for the I-131 treatment. My Radiation Oncologist is just waiting to hear back from the "Thyroid God," Dr.Ain, about the timing between the scan and treatment. Basically we want to make sure that everything is out from the scan and the cells are thirsty for iodine. This will allow for maximum results during treatment dosage which is 10x greater the dosage of I-131 then used in the scan. Let the fun times roll!!!!

Oncologist Meeting

2008-08-29T12:10:00.000-07:00

The meeting with the Radiation Oncologist was today. They took some blood to see where my TSH and TGH levels are at because they will determine when the radiation is done. It is looking like in 3 to 5 weeks from now the treatment will take place.

Before I went into the meet with the doctor I did look up many different studies and articles. I always do this because I like to have a good idea of what is going on before I even talk to the doctor. This time it made for some really interesting reactions from both the doctor and nurse. When given the low iodine diet sheet I picked out things that were incorrect and brought it to their attention. It has on the "foods not to eat" list canned veggies, canned fruit, canned anything. It also goes on to say you can consume soda if it is in a plastic or glass bottle. So I asked if there is some correlation between an aluminium can and iodine. The office was not to sure about that one but they did try to find the answer. They ended up giving me the name of a well know thyroid doctor who is in Kentucky (Very, very good source of info, look on the left for his link). I was rather amused and assured by that move. It showed me that the staff is not going to just make up answers. So I am glad to be working with them on my case.

Getting in to see the endocrinologist has been more of a hassle because they are so booked. My doctor called and talked to them and also my mother had friend who is a neurosurgeon call to give a referral. When I had first called I was told January was the earliest I could get in but due to the many doctors calling the office I now have an appointment for Sept. 17th.

Also all the doctors appointment are tiring but I do want anyone who is going through this to see that it doesn't have to control your life. I am still taking 14 credit hours of college classes this semester. I have talked to my professors so they know what is going and they have been very good in understanding my situation. The only reason to even tell them is because I will have to miss some classes when I am glowing from radiation!

So if you are going trough this too, don't be afraid to email me or post a comment. I would love to help answer any questions you may have about the process and I am always here to hear your concerns.

Pains

2008-08-25T11:11:00.000-07:00

Well I finally got somewhere with the doctors office. This is only after I was crying last night because I was in so much pain. I am not too sure why it is but for some reason because I am off the synthroid I am having muscle pains. It is not a cramp or strain but feels like kinda a mix of the two. It does not happen in just one area or another, it happens everywhere! Last night it was in my right chest and I could not move because it was so bad. Earlier in yesterday I was having them in my back thighs and bum. Today it is in my upper right arm. Today it is not as sharp of a pain it is dull and sticking around. I had it when I woke up and 8 hours later it is still there.

About the doctors office I finally talked to a nurse that calls back when she says she will. She even was so helpful that she called and got me into the Radiation Oncologist for this Friday! When I previously called I was told that I would not be able to get in until January! That was a joke! This nurse called and spoke to office and suddenly they had an appointment open. Thing are hopefully really going to get going and and over with soon!

Test Results

2008-08-21T14:28:00.000-07:00

My results came in on the biopsy on August 7th a day early. The cells were reactive lymph node cells that are benign. On August 16th I went for the first step with the I-131 scan. I got to the hospital at 6:45am and was taken into a room in the Nuclear Medicine department. There was a small metal jar on a table that I sat next to. I talk to the nurse who told me all the precaution about not getting too close to children and making sure that I use plastic eating utensils for the next few days. After her spiel she opened the jar (which was about half inch thick), took out another plastic tube, and dropped a pill in my hand which I then swallowed.

I went about my weekend as normal but avoided kids (including my adorable nephew Liam). on Monday morning I was back in the hospital for the first of two scans. I was so tired so I was half asleep during the scan which took a total of 45 minutes. I just layed on a table that slowly moved me as it scanned. When it was done scanning my head and neck I turned to look at the screen and see if there was anything there. There was. I saw three round balls glowing brighter then a lightening bug. Those glowing spots ment that not all of the thyroid cells were removed.
On day two of the scans showed the masses once again.

Now I am just waiting to speak with a Radiation Oncologist and an Endocrinologist.

Post Op

2008-08-12T14:19:00.000-07:00

Surgery was over and I had my follow up with the doctor. He did not want to do any follow up scans or tests. I started on my synthroid pills and they are amazing! I actually felt like I had more energy after surgery then before. A month later I still did have the enlarged lymph node in my neck which was concerning to me. I went to my primary care doctor and she ordered an ultrasound of the node to determine it's size. It came back measuring 2.6 x .9 x 1.1cm. This raised enough concern and I was sent back to an ENT surgeon.

This time I chose to go with a different doctor would was younger and would have an aggressive approach. I went in for my appointment and the doctor preformed a fine needle biopsy on the node along with ordering an I-131 scan.

Surgery

2008-06-22T12:16:00.000-07:00

The day after meeting with the surgeon at Rush I called and scheduled my surgery. I went into surgery on that Thursday night (7pm because the OR was backed up) and had a total thyroidectomy. The docotor was confident that he removed all the tissue and the final pathology report came back with a 0.5 mm section of papillary carcinoma (very small). I was told that I did not need to worry about anything and that I should start up on my hormone replacement right away.

For anyone that may be going through this, do not worry about the surgery. I was out of the hospital 12 hours after later and the pain was not bad. It just felt like a sore neck. And I did consistently feel that I didn't want to turn my neck too far to one side or the other in fear that i might rip open the stitches. But I never did. The worst part of surgery for me was feeling sick when I woke up from the anesthesia. But by morning I was feeling fine.

Doctors

2008-06-14T23:55:00.000-07:00

I went into Doctor #1's office and first had to wait 45 minutes to even see him. But he was the best in the area so I wanted to go to him. After I finally got into the exam room and he came in we talked about my options. It was very important for me to do my research before I had even meet with anyone because I do not like being in the dark.

We talked about the options but I had already made up my mind and I wanted surgery. I opted for a total thyroidectomy and dissection of my right anterior cervical lymph node because it was also enlarged. After talking to the surgeon for 15 or so minutes we agree on the surgery and he sent me to go schedule it. The nurse walked me over and asked me to wait again. When she came back she told me that the next availability for surgery was 6 weeks out. I reluctantly took the opening even though I thought I needed it done sooner.

This really bothered me the next day so I called back and wanted to talk to my surgeon about moving the surgery up. I was told that I needed to make another appointment and come in to talk to him. So I did just that and took the next available which was two weeks later. The more I thought about waiting the more I was getting anxious.

I started talking to a friend who is also a doctor and he referred me to Rush University Medical Center in Chicago. I called and got an appointment right away. I went and meet with another surgeon for a second opinion on the following Monday. He also agreed on the total thyroidectomy and said he would be happy to do the surgery for me. I talked to his nurse who showed me his surgery schedule and told me she could but me down if I wanted her to. I was unsure of what I wanted right then so I told her I would call back in the next few day.

Choking

2008-06-11T14:25:00.000-07:00

By the middle of June 2008 I had started to get this choking feeling. It felt like I was wearing a turtle neck that was too tight. And I would have this feeling all day long when I had nothing touching my neck. I finally went to the hospital where I had the ultrasound done and picked up a copy of the images. When I popped the disc in my computer I was shocked to see that no news did NOT mean good news.

There were three main areas of concern in my thyroid gland. There was one cystic mass on the right lobe, one smaller tumor on the right lobe, and one large tumor on the left lobe. I am not a doctor and I do not read ultrasounds but I did know that the characteristics of the masses were abnormal for benign tumors. It did not look good.

So I called and made and appointment with a Surgical ENT.

Goiter

2008-05-22T14:19:00.000-07:00

Back in March of 2008 I had a bad cold that just would not go away. I stopped into a Walgreens Clinic to get a script for and antibiotic because I was starting to think that it was a bacterial infection. The Nurse Practitioner there told me that I needed to have further testing done on my neck. She could feel large growths and she sent me to a doctors office where they could the testing. So from Walgreens I went straight to the doctors office where they told me I had a simple goiter and they ordered an ultrasound of the thyroid gland.

When the ultrasound was done I had the results sent to the doctors office. I never called to follow up because I just assumed no news was good news!

About me

2008-05-20T13:42:00.000-07:00

I am a small town girl that has had tons of life experiences both good and bad. I was born December 10, 1984 and am the youngest of four children. My two brothers are Matthew and Daniel and my sister's name is Sarah. When I was 16 I traveled to Sweden and studied there for 6 months. Actually I more or less partied there. I returned to the United States, finished out my Junior year of high school, and dropped out three days into my senior year. I spent years just living life parting. Then I decided that I wanted to see more. So I spent one year collecting airline miles traveling around the US (my favorite place is Cocoa Beach, FL). I had fun with friends and time spent thinking about where I wanted my life to go. Finally after talking with some amazing people I am on the path working towards Med School. I still am finishing up my Bachelors Degree and then I have to get accepted to Med School but I know I can do it if I really want to.