Stage of Cancer and Radiation Treatment

Today I learned more specifically the staging of the cancer and how radiation will progress in a couple weeks. I also had a nice conversation with my radiologist about cycling, too :). Anyway, this is what I learned today:

Stage of Cancer:

There are three categories they use to stage in thyroid cancer: (1) thyroid tumors, (2) lymph nodes and (3) metastasis (the spread of the cancer).

They were able to tell me the stage of (1) and (2), but since I only had scans and surgery on my neck, they don’t know how far it has spread to be able to mark a stage of metastasis.

(1) My tumors were papillary carcinoma–> Stage 2
(2) The expanse of the lymph nodes that were affected–> Stage 3
(3) Metastasis–> ?

Therefore, my condition is at least Stage 2 or 3, without the information of the metastasis. Because of this, my radiologist said that I will be receiving two-three times the dose of the average person receiving the same treatment.

Radiation and how it will work:

One function of the thyroid gland is to produce thyroid hormones that meet the body’s needs. In order to do this, the thyroid uses iodine. Essentially, fully functioning, the thyroid is the iodine center for the body. Now that I do not have a thyroid, the goal is to find all remaining thyroid tissue in my body that could have metastasized from the cancer. How? By killing any tissue containing iodine.

I will be doing “radioactive iodine ablation” treatment (RIA)–also called I-131 treatment. As many of you have read, I have been on a strict low-iodine diet for almost a week and will be until radiation. This is to starve my body of iodine so that the treatment is more successful and targets the potential cancerous tissue. I will be taking a pill of radioactive iodine, and the hope is to kill all remaining cancer.

What treatment looks like:

  • October 11: I will get my blood drawn to see if my levels are where they need to be to start treatment.
  • October 17: I will start the radiation. I will go to the hospital, they’ll give me a pill, and I’ll stay there for an hour or so to make sure I don’t have any serious reaction.
  • Then, I will be quarantined for 8 days. During this time I will be confined to a bedroom and bathroom that no one else can use. I have to use separate plates and utensils and wash them separate from other household items.
  • October 21: On the fifth day of being quarantined, I get to start my new thyroid medication and EAT NORMAL FOOD AGAIN! 😀

Follow up:

When I’m out of quarantine, I will get a full body scan to see what thyroid tissue activity is left in my body. Then, in six months, I will have another scan to see if I need a second treatment.

“The house of religious cards ‘that glory built’ collapses when we inevitably encounter unforeseen pain and suffering. When the economy tanks and you lose your job…When the waters rise and the levee breaks…[when you’re diagnosed with cancer]… Suddenly, the mask comes off, and the glory road reaches a dead end. We come to the end of ourselves, in other words, to our ruin, to our knees, to the place where if we are to find any help or comfort, it must come from somewhere outside of us. Much to our surprise, this is the precise place where the good news of the gospel–that God did for you what you couldn’t do for yourself–finally makes sense. It finally sounds good!”

Tullian Tchividjian, Glorious Ruin.

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