LID (an acronym for the dreaded Low Iodine Diet)

Today is the first day of the Low Iodine Diet that I need to be on in order to make my cells hungry for iodine. And why would they want to be hungry for iodine, you ask? Because on August 5th a nuclear medicine tech will take me into a little room and give me small dose of a radioactive isotope. And this will be taken up by any thyroid cells floating around my body. This will be my 5th scan of this type. It's always a guaranteed week of fun with all the hospital visits, butt shots (thyrogen), radiation, waiting and the not being able to calm my feelings of panic with some therapeutic chocolate.

It's early in the day, but I already feel sad about the LID. Breakfast today was a banana. I love bananas. I love them in banana splits. I love them in banana bread. I really love them in milkshakes. But this banana was plain and quite unaccompanied by my usual morning chocolate coffee complete with milk and sugar. You see I could still have the coffee, but without the milk. Yuck.

Happily this morning I stumbled across the DearThyroid blog where thyroid patients send in their "thyrants" or little notes to their thyroid. It definitely made me chuckle on an otherwise difficult morning. I have a message for my thyroid today and it's simple....

Dear Thyroid,

I hate you.

-Megan

Free at last!

I am officially on winter break now. The funny thing is that instead of relieved I feel like I should be doing some homework. Oh my. Is it crazy that I can complain about stressful it is to juggle everything and then when I get a break I miss school right away? I guess that's just me.

Couple of photos from my last day on campus for the semester. I wanted to take more but it was SO cold this morning.

Test Results

My doctor called me this morning to give me my test result from Friday. There was no thyroglobulin detected in my blood, so this means my cancer is still in remission. My TSH (thyroid stimulating hormone) was 73 and should be .05 and this is due to being off my drugs last week and getting the injections of thyrogen. It should take about 8 weeks for my TSH to go back to .05 and unfortunately during that time I will have the hypothyroid symptoms, most notably extreme fatigue. It sucks because I will be sitting down trying to read my homework or in class and just fall asleep. In the past I have been pretty bummed knowing that I will go through that, but after having several months of being at the correct TSH and feeling great, I am not as worried about it. I know it's temporary and I know that I can feel good. But a heads up, if you are talking to me while I'm hypothyroid and I suddenly start snoring, its not you...it's too much thyroid hormone in my blood.

Cross-posted to Myspace, etc, so sorry if you see this more than once.

Day 2 of Hypo Hell

I received my 2nd shot of thyrogen today. I didn't have the horrible anxiety that I experienced yesterday thankfully. The injection hurt a lot more though which I think I remember being the case before. I gave myself permission to miss class today because of sore fanny and the start of the hypo symptoms being a little overwhelming. While I don't like having the hypo symptoms, it's good to know that this drug I had is working. This drug that by the way, cost as much as if Josh and I went to Mexico for a week and stayed at an all-inclusive resort. But anyway....

So I figure that not everyone knows what I am referring to by "hypo". According to the thyroid cancer survivor's organization, this is what you can expect when you stop taking your replacement drugs and go hypo:

Hypothyroidism Symptoms Following Temporary Withdrawal from Thyroid Hormone

* Weakness, lethargy, cold intolerance, paleness, dry skin, coarse hair, and constipation can occur with hypothyroidism. Other symptoms may include delayed reflexes (such as the knee jerk when the knee is hit with a reflex hammer), brittle nails, increased blood pressure, and a slow heart rate.
* 'Some patients will feel relatively well except for tiredness. Some patients will feel extremely fatigued. However, older patients have greater hypothyroid manifestations, and some patients will have a difficult time performing daily tasks.Thus, as a precaution, all patients who are hypothyroid should avoid making important decisions and driving or operating heavy machinery for one to two weeks before and after the [radioiodine] scan or [radioiodine] treatment
* in many patients few symptoms occur in the time required to prepare for a radioactive scan or treatment or during the weeks afterward restarting thyroid hormone.
* However, patients experience a wide spectrum of symptoms during their period of temporary hypothyroidism. A few patients feel the same as before. The great majority feel considerably slowed down, both physically and mentally. Some describe it as feeling mildly sedated. They can converse and do household chores, but their reaction times are slower. They are also more prone to errors when doing tasks involving attention to details. A few patients feel more severe symptoms from among those described above.
* The time of recovery from the symptoms of hypothyroidism also varies from weeks to months, and this at least in part depends on how long it takes to appropriately adjust the dose of thyroid hormone


I would like to add to these:
* a headache that never wants to go away.
* staring at my hand
* staring at the wall
* not making sense when talking
* walking into a room and forgetting why I'm there
* feeling too tired to eat or just wanting to sit & eat nonstop. Can't win with the eating!

The Good Cancer

I'm told that I have "the good cancer". I hate hearing that because no cancer is good. No one wants to be a cancer patient. But really I suppose it is the good cancer. It has a very high cure rate. The treatment typically doesn't involve chemo. It's even a slow growing cancer. I have two other survivor friends who endured far more in one day of their treatment than I have dealt with in the nearly 3 years since my diagnosis. I am alive. I am in remission. I am growing healthier and healthier. So what do I really have to be upset about? Rationally I know that this week is just something I have to do. I have to go through these tests every 6 months. It's just something I have to do...maintenance in my life. Sort of like changing your oil or your furnace filter. It's just a fact. I have no reason to expect that this will be anything but routine maintenance.

But yet, I was filled with anxiety this morning. Not over getting a shot in the butt. Not over worrying about pain or needles. Not anxiety over the rushing around that I have to do this week to accommodate all these trips to the hospital. I was anxious about cancer. All I had to do is hear the words "nuclear medicine" and my immediate reaction was a panic attack. My legs felt like jelly, I was dizzy and my heart was racing but somehow I was able to follow the nurse into the room to get my injection. I didn't really even feel it because at that point the room was spinning. I had to sit down so I didn't pass out. I had to let myself cry.

You see, it's not just about the test. It's the fact that having cancer has really made it hard for me to see the big picture realistically anymore. It's the worry over what the long term effects of all these tests and radiation and "nuclear medicine" will have on me. It's the worry that the results won't be "undetectable". It's the memories of having my neck sliced open twice. It's the memories of radiation isolation. Of being away from my kids. Of being alone. Of not being in control of what was happening to me. It's hard not to feel freaked out that they put something in my body that made me have to be quarantined for 2 weeks.

Luckily I was able to talk myself down. I was able to call my husband who is always steady and calming. This week will suck, but it's just maintenance. Next week, I know my doctor will call me and tell me that cancer cells were "undetectable" and we'll celebrate. And I won't have to deal with this for the next 6 months or hopefully even a year.

But I am wondering...when will this anxiety stop? It is after all, "the good cancer"...what's there to worry about?

Currently reading :  Gods in Alabama  By Joshilyn Jackson

Ultrasound results

Just got my neck ultrasound results and they are good. No tumors in there. My lymph nodes are still larger than they should be, but there is no change from my ultrasound 6 months ago.

Next week I'll be getting my shots, being super hypothyroid and having my blood test for the cancer marker, thyroglobulin. I am sure the thyroglobulin will come back as undetectable. I'm not worried. What worries me is how I'll survive they hypothyroid symptoms while juggling school and my mommy duties. Luckily I know I can get a doctor's note for school if it gets to be too much.

So probably 2 weeks from now I'll have those results. I'll keep you all posted. And please disregard my zombie like behavior next week. I can't help it. My TSH will probably be about 150 times what it should be and that will really mess with me.

Currently reading : Frauds, Myths, and Mysteries: Science and Pseudoscience in Archaeology By Kenneth L. Feder

It's that time again...

Monday I started the process of going through my remission testing. It's sort of a long process because I have to have a few tests and wait for the results. Yesterday I had an ultrasound of my neck to check my thyroid bed (nothing is in there after all) and my lymph nodes. I have had a few suspicious lymph nodes in the past but my last ultrasound showed that they had shrunk in size and seemed to be getting back to normal. So hopefully these results will show that they are now back to their normal size. After this test, I will have to have shots that will make my TSH spike and then another blood test to check for Thyroglobulin. Any presence of Thyroglobulin would indicate there are thyroid cancer cells in my body. I do not forsee that test showing anything and neither does my doctor.

All that being said, it's still a rough time for me. Being hypothyroid makes me feel very tired among other things. Emotionally it's stressful for Josh and I as we wait to get all the results. Not because we anticipate a problem, but because the unknown is scary. Also let's face it, who enjoys paying for these tests? So why am I sharing this? So you all know if I'm not "myself" or Josh is not "himself" as we go through this. So you know that if I say I'm tired, I'm not exaggerating.

And I'll keep you all posted with the results as I get them.

Friday update

It's been a busy week around our household. Last night I went to my close friend (and fellow cancer survivor) Amanda's bachelorette party which was fun. I am feeling my age though and couldn't stay out long. Knowing that you have to get up with the kids makes it harder to stay out late partying it up. Amanda is getting married this afternoon. I know she is a little bummed that it's thunderstorming all day, but I remember hearing that it is good luck to have rain on your wedding day. From experience, I know couples (including us) who had some rain on their big day and are really happily married. So it must be true!
Me and the bride on her last night as a single woman!


I got my lab results yesterday from my latest blood test. Good news/not-so-good news. The good news is that my TSH is right for the 2nd time since I started this whole cancer misadventure. What the heck is TSH you ask? It stand for thyroid stimulating hormone. Since I have cancer, this number is very important to me. My TSH has to be under .05 to keep these thyroid hormones suppressed. In theory, if I have any thyroid cells lingering in my body (and my doctor cannot definitively tell me there are none in there), a high TSH could stimulate the cancer to come back and grow. My TSH number is also important because it is a gauge on how I am feeling. If the number is too high, I feel like a zombie. If it is too low I am also tired, but experience other icky side effects. The bad news is that I'm still not feeling very good. I don't have a lot of energy. There is one other part of my thyroid panel called Free T4 that is running towards the higher end of the "normal" spectrum so I will be researching if that may be to blame and talking to my doctor. Otherwise, I guess I'll just have to give up my partying night owl ways. Ha ha. If you know me, you know that I am such a homebody!

More test results

Today I got my blood test results.
Thyroglobulin is undetectable. Cancer free!
My TSH needs a little tweaking again, but I'm quite used to that. I haven't stayed on the same dose for more than 3 months since I started this thyroid adventure.

I really don't feel like a cancer patient. Well maybe I do a little still. But I feel like a normal person who is like 90% healthy with just a little naggy cancer issue. This is an improvement from feeling like my life was ruled by cancer. I don't feel like I'm in some crazy in between place waiting to get a clean bill of health anymore. Cancer...you are my bitch!

W00T!!!!!

Test results

Good news: my thyroglobulin test came back as "undectected" which means there are presumably no thyroid cells running around in my body.
Not-so-good news: my doctor is still worried about my strangely large (and continuing to grow) lymph nodes. She has decided I needed a biopsy. So next week I am going to have a big f*@$ needle in my neck to check it all out.

I'm trying to look at this as good news, but I can't help but be scared of what they might find. I didn't sleep at all last night and I'm super tired and stressed out today so that makes it hard to be rational.

It's hard to be supermom when you feel poopy or are worried about something so huge. But I'm plugging on. Daughter loves school and I'm finally okay with her going. It was sooo hard for me the first few days. I love picking her up because she is so excited to see me. Son seems to also like school and is trying much harder this year to get those grades he is capable of. I'm proud of them both.

I love my classes. They are both quite challenging and homework heavy, but I'm excited about learning new things.