Timeline of Treatment, September-April

It has been 3.5 weeks since surgery, and yesterday I met with my endocrinologist to get a timeline of what my treatment is going to look like. While he was not able to give me more information about the treatment itself, he did give me a timeline for the next several months.  I thought the next step was going to be another CT scan, before heading straight into radiation, but he said the cancer was extensive so a scan is pointless–we’re just diving right in on the process. Here is my timeline for the next several months:

Now until after radiation: Adhere to a low-iodine diet

Food to avoid:

  • Iodized salt and sea salt and any foods containing iodized salt or sea salt.
  • Seafood and sea products
  • Foods or products that contain these sea-based additives: carrageenan, agar-agar, algin, alginate, nori
  • Dairy products (milk, cheese, cream, yogurt, butter, ice cream, powdered dairy creamers, whey, casein, other dairy products).
  • Egg yolks or whole eggs or foods containing whole eggs. Egg whites are ok.
  • Commercial bakery products. Avoid bread products that contain iodine/iodate dough conditioners.
  • Red Dye #3. However, Red Dye #40 is OK. We suggest that you avoid red, orange, or brown processed food, pills, and capsules.
  • Most Chocolate (for its milk content). Cocoa powder and some dark chocolates are permitted.
  • Some Molasses.
  • Soybeans and most soy products (soy sauce, soy milk, tofu).
  • Some beans besides soybeans.The National Institutes of Health diet says to avoid these beans: red kidney beans, lima beans, navy beans, pinto beans and cowpeas.
  • Rhubarb and potato skins. The inside of the potato is fine.
  • Iodine-Containing Vitamins and Food Supplements.

Foods to limit:

  • Fresh meats. Up to 5 ounces per day of fresh meats such as chicken, beef, pork, lamb and veal
  • Grains, cereals. Up to 4 servings per day
  • Rices.

September 28: Stop taking thyroid medication

This will likely be the start of the hardest part of the process. I have been taking replacement thyroid medication since I had my thyroidectomy and feel pretty exhausted in any event. Taking no thyroid medication will essentially leave me without a metabolism. I will struggle with being even more tired than I am now–all day. I will be completely off of any thyroid medication until after radiation (~3 weeks).

I am allowed to exercise during this time (of course this was my first question to the doctor, hoping this will give me a fake sense of metabolism and jump-start my days 🙂 ). However, my doctor was frank with me and said that he is certain I will not want to–even though physically it is not harmful. He doesn’t know me too well 😉 Challenge accepted.

October 4: Meet with my radiologist

I will meet with yet another doctor–my radiologist–to learn more specifically what radiation will look like. The treatment I will be doing is called radioactive iodine ablation (RIA). I will take a pill and the goal is to kill all of the remaining cancer cells in my body.

I know having the RAI treatment will make me radioactive, and I know that I have to be quarantined for a certain amount of time, depending on the dose. I know I have to avoid children and pregnant women for a certain amount of time, as well. However, I have no clue just how long for anything, because they are hoping to do a high dosage of RAI because of the extent of the spread. We’ll see!

October 11: Get blood drawn

After being off of my thyroid medication for 13 days and on the low-iodine diet, I will get my blood drawn to see if my levels are where they should be to start RIA.

October 17: Begin RIA

Depending on my blood results, I will start RIA this day. I’m hoping being radioactive means I glow. How cool would that be?

October 21: Begin new thyroid medication

On the fifth day of RIA treatment, I will start a new thyroid medication that I will take once in the morning and begin to regulate. I will be on this medication the rest of my life. I have heard stories from people who have had difficulty regulating this medication, so I’m hoping for an unusually fast regulation period. This will be when I begin to feel closer to “normal” again!

November 26: Meet with my endocrinologist sometime this week

Six weeks after starting my medication, I will meet with my endocrinologist to see exactly how the medication is affecting me and to make adjustments accordingly. After this meeting

December: Meet with my ENT

I get to meet with my favorite doctor again! He was my surgeon and ENT through this whole process and he wants to check on the healing of my neck again.

April: CT scan

I thought that all of this would be done by the end of the year, but because of its extent, my endocrinologist seems to think that a second round of RIA is a definite possibility. Six months after the first treatment, I will get a CT scan done again, and if there is anything remaining, I will start the process of no medication/low-iodine diet again and start a second round of RIA.

In any event, I’m doing well. I’m blessed by those around me who continually fill me with joy. Your cards, Facebook messages, tweets, texts and phone calls mean the world to me. While I never really know how to express thanks enough, please know that I deeply appreciate every act of kindness from each of you.

The song below is a song that has been a favorite for a long time. I want to encourage you that God is making beautiful things out of us. He is taking this situation I’m in and turning it into something remarkable. I’ve already begun to see the picture he’s painting, and it’s the beginning of something beautiful. I pray this song brings you a little hope today.

“Beautiful Things” – Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new

2 thoughts on “Timeline of Treatment, September-April

  1. CutthroatDiva says:

    I wish you the best on your RAI! I had my surgery a few days before you but am still waiting to hear back on when the RAI is.

    I had spread to level VI lymphs so just waiting on dosing.

    Best to you! Hugs!

  2. Sarah Myers says:

    Hey, beautiful. Great song. I also enjoy how the video behind the play button is a still of the artists with their mouths wide wide open in the middle of praise. I’ve been thinking about you a lot lately and I always kinda picture you like that. 😉 Like no matter what else is happening in your life, you’re always in the middle of praise and won’t be interrupted. It’s amazing, and thank you for sharing. God knows you’re a multitasker, might as well do cancer too, right? ❤

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