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

Pushing Through Recovery and Seeking a Meaningful Story.

Two and a half weeks have past since my full thyroidectomy and lymph node removal surgery, and I am reluctant to admit that it has become difficult. The first couple weeks I was pushing through the pain of the surgery and the little inconveniences of recovery, but the process of healing in that regard was relatively simple for me to push through mentally. It was surgery after all, it made sense that pain would come, and it made sense that I would be down for the count for a week or so with all of the antibiotics and anesthesia in my system.

Now, however, since my wound is healing very nicely, and I’m gaining more mobility in my neck, I desperately desire to be able to go about life normally, but my body will not allow it. I feel very tired all day and while I can go out for a chunk of time–even the majority of the day or the majority of an evening–I cannot make it through a full day of walking around or even talking without getting exhausted. I really do not want this to be a woe-is-me blog, so please bare with my transparency and honesty.

It is definitely a mental battle. I have never been forced to rest for this long. I am used to being able to get up early, exercise, accomplish an extensive “to-do” list each day and feel pretty energized even at the end of the day. Deferring law school a year because of being diagnosed with cancer four days before starting was difficult, but not as difficult as dealing with the frequent thoughts I have these days:

“What are you doing with your life now?”
“Why are you just sitting there?”
“Why are you wasting time?”
“How are you helping others by laying on a couch?”

I have committed myself to a daily devotional each morning and have learned that if I read immediately when I wake up, I can read what I planned to before my nausea and exhaustion settles in. It has certainly helped start my day off on the right foot and kept my spirits high. I look forward to being able to read more throughout the day and growing more in knowledge and understanding. For now, it is hit or miss each day if I will be feeling well enough to read and comprehend. It’ll come though, I know that.

I want to make a difference in this world, and it is hard for me to be confined to my apartment for much of the day. I want to go out and talk to people. I want to love strangers, seek justice for the oppressed and pursue opportunities that place me in optimal position to impact people for good.

Right now, I need to seek more silence and prayer. There is nothing else I can do at this point, and I am finding peace in that. From living in California, working four jobs while going to school full-time and being part of a world-class percussion group to—-> moving to Chicago, being diagnosed with thyroid cancer, having no school and work only two nights a week for a couple hours…I do not think it is an accident that I’m being forced to slow down. It is time to truly evaluate what I want the rest of my life to look like when I complete radiation and get back to full health in the next few months.

I am so thankful that my favorite author, Donald Miller, just released a new book called “Storyline: Finding Your Subplot in God’s Story.” It looks like it is going to be an excellent resource for planning a life that has a meaningful story. I hope that while I’m quarantined for radiation treatment, I can spend time working my way through this book. I meet with my endocrinologist on Monday to talk about the treatment.

In everything though, I continue to be reminded of how blessed I am and how beautiful the people in my life are. Thank you for your encouragement and steadfast love through this journey. While I like to pretend I can do this all on my own, I am willing to admit that I am wrong. I would not be where I am today without all of your love and support. If you have made it through the end of this post, you are one of those people, and I just have to say from the bottom of my heart–Thank you.

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” Ps. 73:26

Two Weeks Post-Surgery.

Tomorrow marks two weeks post-surgery. While the time has past relatively slowly, it is actually pretty hard to believe it’s already been two weeks. Each day there have been small victories in recovery. From removing the dressing, removing the stitches, removing to tape, to being able to lay on my back again, to sleeping in a bed, to being able to shower, to being able to run errands without wanting to fall asleep, to returning to teaching high school percussion.

I’ve been really trying to learn how to rest, which is something I’m not used to. I am so used to being borderline unhealthfully busy and now I am forced to take not just a breather…but to stop. I am also used to exercising daily. Yesterday I “ran” for the first time since surgery (12 days after surgery), and while I was only doing a light jog, my heart rate was between 170-180 bpm the whole time. When I finished, I realized just how much my body still needs to recoup. Don’t worry, I’m not going to try that again for a while…I realize now that there can be severe ramifications to that.

My heart rate is still very elevated from what it normally is. I’ve begun to wear my heart monitor when I’m sitting down, to get an idea of my resting pulse right now. I’m used to my resting pulse being around 60 bpm, because of how active I am. Now, it’s not uncommon for my resting pulse to be around 85 and as soon as I walk from one place to the next, it jumps up to 110-120 at least. I have really been trying to learn how to be physically still. It’s so hard. However, today my resting pulse has been in the upper 70’s, so hopefully in a couple days, I’ll feel safer about running or riding my bike!

This week I starting teaching high school percussion again and it was SO wonderful being back in that element. I truly hope I can inspire these kids and give back to them all that has been given to me over the years.

I meet with my ENT again next Friday for follow up and then meet with my endocrinologist the following Monday to talk about radiation treatment. I’ll be starting radiation in the next few weeks. I’m SO glad my favorite author, Donald Miller just released a new book, so I have good material for the days I’m quarantined for radiation :)!

Thank you ALL for your amazing encouragement and support! I am doing very well, and I am excited to see where this unexpected season of life takes me. I am comforted by Christ daily, and the changing seasons in Chicago–pumpkin spice and crisp air, can’t wait for the leaves to start changing!

Fact of the day: “Thyroid cancer will set a new record in 2012, with 56,460 people newly diagnosed in the United States and more than 200,000 worldwide. Unlike many cancers, thyroid cancer is increasing in incidence, and it’s the fastest increasing cancer in both men and women.” (article)

 

Photos from my recovery:

 

Day 4, second day out of the hospital

Day 4, First time going for a short walk in public. Threw on the scarf as to not scare children 😉

Day 5, Mom helping me wash my hair when I wasn’t allowed to get the incision wet.

Day 6, last day of stitches

Day 7, stitches out, tape on, waiting to get blood drawn to see where my calcium levels are.

Day 7, Came home to my apartment for a night and was overwhelmed by love of my roommate and packages in the mail. As a Colts fan, it was pretty bittersweet to receive a new Peyton jersey in orange 🙂

Day 8, driving for the first time since surgery. FIRST DAY that I did not feel nauseous since surgery!

Day 9, first time heading out to meet a friend to hang out–to watch kickoff Sunday football!!

Day 10, Stitches AND tape off. Complete healing commences. You can see fluid still sitting in the center where my thyroid used to be. Still waiting for that and the swelling to go down.

Day 10, I decided it was pretty cool that I now have two “smiles” 😉

Day 11, I can really see that this is healing beautifully now!

Day 12, Redness is really minimal now!

Day 13, It’s still healing very nicely, though I’m starting to get some serious stiffness in the back of my neck from the lack of use of the front muscles of my neck.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Road to Recovery

Last Friday, I had a total thyroidectomy and lymph node removal, which confirmed a solid presence of papillary carcinoma–the most common type of thyroid cancer–in my neck. They removed several cancerous lymph nodes and my thyroid in a 4-hour surgery. I am so thankful we got it taken care of now, because there was a cancerous node that had spread to just above my collar bone, and I am glad it does not seem to have spread any further down!

Day 1-My brother took this picture of me, just a little while after I woke up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The first day was particularly rough, it was nearly impossible to swallow, and I was extremely nauseous from the anesthesia. I have a hard time not being able to take care of myself, and it was frustrating having to depend on people to help me to the bathroom and to get out of the hospital bed. It’s definitely a lesson in progress!

Day 2-My cousin Melissa and I.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I was released from the hospital the second day, because my calcium levels were more predictable. This is HUGE! I could’ve have been there another full day, but not this chica! 🙂 I have been recouping at my grandparents’ house, with the help of my parents (Who flew in from California for this whole process–BLESSED). It’s humbling having to depend on my parents and grandparents to wash my hair, lay me down and re-bandage. I haven’t been able to sleep laying down yet, because of the amount of junk still stuck in my throat and the weight of my bandage on my neck–when they lay me down, I start choking and have trouble breathing. I’ve been getting very good at sleeping in the recliner though!

I think the craziest thing for me right now is looking at the pill regimen I have now that I have no thyroid. Some of it will go away after a little bit, but it’s so cool to me that someone out there figured out that even though I don’t have a thyroid, if I take one of each of these, twice a day, I’ll be fine. Crazy! I didn’t think I’d be on a daily pill-dosage at 22-years-old, but hey, I’m alive and doing well 🙂

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
I was able to see my battle wound for the first time today–I’m taking ideas for stories that I can tell about how this happened! (Leave a comment with a creative story I can tell ;). I get my stitches out Friday, meet with the endocrinologist in three weeks to figure out my medications, have radiation in a month (which I get quarantined for several days), and then a follow up CT scan six months later to see if everything is clear. The process is moving along, and I’m going to be just fine. Thank you for your thoughts and prayers!

Day 3-Battle Wound