Stupid Diet Continued

This is the 4th time I've been on the low iodine diet.  It continues to get easier everytime as I find things throughout the year to add to my list of acceptable foods.  So, I'm sharing those additions today!

1. Wheat bread seems to be acceptable, even if it has a little salt.  With turkey and a crunchy veggie, not bad
2. Cream of Wheat with real maple syrup
3. Great Harvest Cinnamon Chip or Honey Wheat bread. I can't live without it!
4. Soy Free margarine at Whole Foods by Earth Balance. Melt it and mix with honey for honey butter, awesome on the cinnamon chip bread!
5.  Pasta sauce is probably fine out of the jar, but I did find a new one at Whole Foods called "monte bene" garlic marinara made with "kosher salt".
6. Trader Joes Druid Circle cookies
7. Unsalted Tortilla chips from Whole Foods with homemade salsa.
8. Vanilla Hemp milk from Trader Joes, blended with frozen fruit
9. Newman's Own unsalted popcorn (melt soy free margarine and add salt)
10. Banana with unsalted peanut butter and granola
11. Wine, pepsi, tea, flavored water
12. Starburst and jelly beans
Somehow I've managed to turn a diet that could be so healthy (fruits/veggies) into a carbfest! But it makes me happy :)

Bringing Sexy Out of the Thyloset



I started my blog "stupid thyroid cancer" in order to remind myself of what I've been through, how I got through it, and share 'what worked for me'.  I am excited to be a part of the dearthyroid community and share about my experience through the blog tour!
• What kind of thyroid cancer were you diagnosed with? How many years have you been a survivor?

In July of 2007 I went to the doctor because I was tired. I expected her to tell me that was normal because I had a 1 year old son and worked full time. I'm so lucky that she didn't. She had my thyroid checked, which led to an ultrasound, which led to a biopsy, which ultimately led to me finding out on my birthday that I needed surgery because they weren't sure if the tumor was cancer or not.
On November 5, I had my first surgery and two days later, found out it was follicular thyroid cancer. I had total thyroidectomy on November 12.  I have been a survivor for almost 3 years now.  I also had hashimoto's and because my thyroid was so inflammed, I lost all parathyroid gland function and now live with hypoparathyroid, which gives me chronic low blood calcium.  It's almost been 3 years and I'm getting ready for my yearly checkup and tests.

• September is thyroid cancer awareness month. What does that mean to you? Why do you think awareness is important? How do you spread awareness?


Throughout the year I tell my friends and family not to forget about their own health and to make sure they go to the doctor for a full checkup. We can't forget to take care of ourselves in our busy lives!  It's so easy to check your neck for lumps. I had no idea, but my throat felt tight throughout pregnancy and after, and talking sometimes hurt, both signs that something is wrong.  This disease can happen to anyone at any age, and I think that's the tricky thing about it for young women.

• Many thyroid cancer patients have been told, “If you have to get cancer, thyroid cancer is the one to get.” What do you think of that statement? When you’re told this, how do you respond?

I have been told so many times that "If you have to get cancer, thyroid cancer is the one to get."  Doctors, friends, family have all made this statement.  When you are going through this horrible thing, nothing makes light of it, nothing!  It is so easy to say that, to try to make someone feel better, and I'm sure their intentions are good, but I just remember thinking to myself "That's BS!".  At the same time, I would actually repeat it to make someone worry less!  I was kidding myself, I was scared, I was exhausted, I was sad, but nobody knew because I was "lucky".  Lucky?  I would not wish this upon anybody!

• Dear Thyroid is constantly working to dispel the myth that thyroid cancer is the good cancer or the easy cancer. What other myth would you like to dispel regarding thyroid cancer?

One myth I want to dispel is how easy it is to recover from thyroid cancer surgery. 
Most think you take a little pill the rest of your life, and your fine.
For me, not so much. My parathyroids are all dead now, so my body completely shut down. I spent a week in the hospital and have been back to the ER calcium IV's. If I get the flu, I expect to end up in the ER to replenish my calcium.  Not to mention my 'badge of honor'.

Balancing medication has been the most difficult thing about it. I give blood every 3 months to ensure I'm okay.  That's not normal! I take up to 8 pills a day to be normal. 
Synthroid: for thyroid hormone
Calcitriol: for calcium absorbtion
Microzide: so I don't get kidney stones from all the calcium
Calcium: 1800 mg/day=3 huge pills
Ambian: cause I can't fall asleep anymore
Celexa: to cope

• What one thing would you tell the world about thyroid cancer?
Cancer sucks, no matter if you have to get chemo, radioactive iodine, surgery, whatever! There is no good cancer!  Reach out and spend quality time with your friends, talk openly about it, it helps.

• What advice would you give to a newly diagnosed thyroid cancer patient?

Don't question your gut feelings, call your doctor if you don't feel well. Also, get some counseling, this is a traumatic event in your life, and you need help coping.  Also, don't believe everything you read, it will freak you out!

• Do you have a funny thyroid cancer-related story you are willing to share?

A few months after my surgery I got the Radioactive Iodine (RAI) treatment. I went to the Nuclear Medicine Lab to receive my dose.
They took me into a room and the physician assistant walked in with a pill box in a steel cup on a tray. She had gloves and a mask on. She told me to take the cup and without touching them, swallow the pills. She then walked all the way to the other corner of the room.  "I'm just going to stand over here" 
I'm thinking, you are standing way over there and I'm swallowing this???  Wow, this cannot be good for you.  Over the next three or four nights, my pillow turned yellow. Gross!!!


About Dear Thyroid:
Dear Thyroid is a thyroid support community and literary brand. Our goal is to connect patients with each other, to create awareness for thyroid diseases and cancers, and to give all thyroid patients a voice. We come together as a united front to invoke change on behalf of thyroid patients worldwide. Thyroid patients are invited to submit letters to their thyroids, thyroid rants and raves, and other literary creations. Help us to create awareness for thyroid diseases and cancers by wearing your disease on your sleeve and by requesting one of our free awareness bands. Visit DearThyroid.org to learn more!

Stupid Medication

As we all know, the stupid medication is one of the most difficult things to figure out after surgery and is an ongoing struggle! 
At the hospital-
You'll probably have to take calcium after you have your thyroid is removed. This is because the parathyroid glands shut down from the trauma.  Hopefully your fuction comes back soon, so you don't have to swallow any more horse pills!  Unfortunately for me, I lost all parathyroid function for good. More to come on that in my blog named : Stupid Hypoparathyroid Disorder

You'll have to take synthroid or some sort of synthetic thyroid hormone.  You will also take blood tests regularly to ensure you are getting the correct dose because if it is a little off, you could experience hypo or hyperparathyroid systems and those are not fun!  Tired, Sleeplessness, Brain Drain, Dry Skin, Depression are just a few. 

Now, if all you have to take is Synthroid, consider yourself lucky!
I have to take care of my Hypoparathyroid disorder with even more meds!
Calcitriol- A Vitamin D Supplement in it's processed form, to help your body absorb calcium
Hydrochlorothiazide- To help your kidney's flush out any excess calcium, so that you don't get painful Kidney stones!
Calcium - Lots and Lots of calcium, taken at least 4 hours after your thyroid hormone pill. 
I've tried a few forms: Tums, Caltrate, Calcium without V-D, calcium with V-D.
My favorite? Nature Made Liquid Softgels by a landslide! I'm telling you, they go down easy and they have 600mg per pill + some added V-D, which you need even if you are taking Calcitriol.

All of this medication is crazy!  But, it keeps you alive and healthy.

So, how do we deal? You have to be your own advocate people! 
Sometimes I just feel crappy, so, I call my doctor and request a blood test.
Do I like blood tests? Hell no!  But I sure feel better when my meds are right.

Stupid Thyroid Cancer Resources

There are many great resources to get you or your family through this time. I've linked many of the sites I use regularly to find out correct information, local events, and fundraising opportunities.

Low Iodine Cookbook
A Must-Have as you prepare your body for the RAI treatment and/or Checkup.
Here is a blurb about the diet for your friends and family:

The purpose of a low-iodine diet is to deplete the body of its stores of iodine, to help incrase the effectiveness of the radioactive iodine scan or treatment. The premise is that when the radioactive iodine is administered, the thyroid cells will "suck" up the iodine, because the body has been so depleted. Preparing for RAI Treatment

Thyca: Thyroid Cancer Survivor Association
A great resource for educating, meeting others affected by this disease, and learning about Clinical Trials.
Another thyroid cancer survivor and myself will be starting a Support Group in the Portland area soon! More to come!

Livestrong
The Livestrong Foundation, started by Lance Armstrong after surviving testicular cancer, and going on to win several Tour de France races.  They have numerous resources, volunteer and donation opportunities.  They provide a journal to cancer patients trying to balance their medications, doctors and treatments as well as inspirational stories to keep you going.
American Cancer Society
Forget chat rooms, if you want to find out more information about thyroid cancer, use this site as well as the others posted here. You will get factual information about your or your friends/family's disease.  Chat rooms created panic for me, but now I've learned that people in there are operating on a "worst case scenario".  Not good for a newbie!

I'm Too Young For This Cancer Foundation
I love this site.  Get involved with other young adult cancer survivors with the "Stupid Cancer" campaign.  Join your local chapter and get invited to Happy Hour, bowling, or help organize an event to meet other people in your community affect by this disease.

Light Of Life Foundation
Want to get involved? This foundation is dedicated to thyroid cancer awareness.  You may have seen their ads to "check your neck" in some of your favorite women's magazines.
Young Adult Cancer Statistics

WIP

Stupid Hypo

I haven’t had to go Hypo since my first RAI treatment. It was hell. I did take cytomel during my 2 weeks off synthroid, but little did I know if was like taking a shot of espresso every time I popped a pill! No wonder I still couldn’t sleep. I didn’t experience too much of a ‘down’ due to the cytomel. But I felt so out of it and crazy. Between that and the diet, I lost it a few times.


A year later, when Dr. Wolf told me I would be able to take thyrogen injections and stay on my meds, I cried tears of joy! I was so upset/happy/relieved, I couldn’t hold it in. Most of the time I don’t think my doctors understand what I’m going through in dealing with this disease, but at that moment, my face said it all.

I’ve now had thyrogen injections two years in a row. I am able to do the RAI testing with little interruption to my life besides the “stupid diet”.

I cannot imagine not having health insurance and being diagnosed with Thyroid Cancer. These shots alone cost $2,000, not to mention having to get RAI and a whole body scan.

Young adults are the most underinsured group in the US, and cancer is killing us. Can you imagine not being able to afford to get the care you desperately need?

The Stupid Diet

What is the Low Iodine “Stupid Diet”

Well, for us lucky enough to prep our bodies for Radioactive Iodine Treatment (RAI), we have to get ready by starving our bodies/thyroid cells of iodine for 2 whole weeks. By doing so, when you take the radioactive iodine pill, your body is ready and willing to accept it. The next day, we go to the nuclear therapy lab and get a whole body scan. If there are any thyroid cells, they will ‘light up’ due to the radioactive iodine. This first dose in not dangerous, nor require seclusion due to being ‘radioactive’. But if you are positive for thyroid activity, you will continue the diet and return to take a higher dose, requiring seclusion.

Why seclusion? Well if you have a healthy thyroid, it can be damaged by radioactive activity, so stay away!

Here are some tips I like to make the Low-Iodine diet bearable. Let’s admit, it sucks. Especially if you hate to cook, like me! I eat out numerous times a week, so this diet sure puts a damper on my culinary enjoyment.

A few things that get me through the day.

Oatmeal with brown sugar and strawberries.

Licorice and Jelly Bellys.

Mike’s Hard Lemonade

Great Harvest Cinnamon Raisin bread, toasted with margarine

Fruit smoothies. Frozen fruit (costco) with egg white protein or Hemp Milk, banana

Pasta with Low Sodium sauce (Whole Foods) and ground beef

Grilled Steak and Sweet Potatoe with brown sugar or roasted potatoes (sprinkled with non-iodized salt, pepper, and olive oil.

Grilled Sweet Corn

I have somehow found a way to actually gain weight during the Low Iodine diet. Must be all the carbs I have discovered, that make me oh so happy.

If you do love to cook, don't forget to download the Low Iodine cookbook from thyca.org!

Stupid Thyroid Cancer

This is my new blog. If you have or had thyroid cancer, I hope I can offer tips and support through my own experiences.  As a survivor of thyroid cancer, I found through my experience there is very little information that didn't freak me out or make me feel like I was gonna die.  So, as a 33 year old, follicular thyroid cancer survivor of 2.5 years, here is a positive spin on my stupid thyroid cancer!

What happened?
My son Ronan turned 1 year old in June of '07. Now, I love my son, but that year was so hard and is a complete blur.  I have exhausted, depressed, a mess.
I worked full time and had a 1 year old active boy. I could barely get my self out of bed every day.  Normal? Sure! Until I went to my favorite doctor, Dr. Kara Kassay, cried my eyes out and she told me "something is wrong, this is not normal!" Thank you god for Dr. Kassay, she saved me.

Instead of telling me "you have a one year old and work full time, of course you're tired. Take more vitamins.", She said we'd do some tests. She asked me if my neck had swelled up, if I thought it looked normal. I had no idea.  Hello ultrasound and blood tests!

Blood tests showed I was hypothyroid, no wonder I was tired! This causes sleeplessness, general fatique, weight gain, depression, dry skin as well as other symptoms.  I got started on Synthroid right away. 
Then I had the ultrasound at St. Vincent. I had a lump and needed a biopsy.

Scheduled biopsy, ugh, not fun.

Basically they numb you up, take a needle and jam it into the lump a few times.

Waited and waited for results, finally the doctor called on my birthday right before my birthday massage!

"It's a type of lump we need to remove right away. We can't tell if it's cancer or not, so let's get it out." Enter panic. Great.  I start doing hundreds of web searches, trying to research something I know nothing about. Causing massive fear and confusion. Note to self, call doctor instead of searching the web. The people in these chat rooms are much worse off than I am!

Now it's Nov. 5 2007, and I'm going into surgery. They removed the lump in the center of my thyroid. Basically there is a 3% chance it's cancer. Two days later I get the call "it's follicular thyroid cancer, you need to have your entire thyroid removed on Monday". Enter panic again. Brain overwhelmed by fear, depression, cancer??  I'm only 31!  I have a baby, husband, family.
Enter loving friends and family.  There was a strong outpouring of love and support, while I continued to assure everyone that I was fine. But inside I was a mess. I was far from okay. I have never felt so scared and I didn't show anyone just how fearful I was.  Why did I feel like I had to reassure everyone I would be okay?  I became the supporter rather than the supported.  Didn't want people to worry.

Went back into surgery to remove whole thyroid and felt like I had been run over by a car afterwards.

I was in the hospital for 5 days. Fought low calcium levels, stomach pain and nausea for 4 weeks, maybe longer?

Turns out I had hashimoto's auto immune disorder and my thyroid was totally inflammed. My parathyroid glands, responsible for calcium metabolism, were removed as well because the thyroid had engulfed them.

Went through hell trying to figure out why I felt so gross, nauseaus, sick, tired, and couldn't sleep. Every day was an experiment.

Taking supplemental calcium was making me sick, so take Magnesium, try Tums, take sleeping pills, take melatonin, take this, take that. How do people manage so much medication and supplements?!

Finally confirmed I needed the parathyroid meds and felt better within a few days. This took a month to figure out! What the?

6 months later I felt good. Not yet fantastic or even close to myself, but good, functioning.